The oncologist wants me to do "maintenance Rituxan" in a couple of months but I am reading literature that would indicate questionable help from doing maintenance treatments and some possible harm.
But it's controversial and I am trying to figure out what to say to the doctor. Do I want to go against his advice? "There isn't a study yet which shows a survival benefit." Re-treatment is just as good upon recurrence. Does it impact negatively upon subsequent therapies? There is some evidence to show it does.
"This tells us that it is fine to manage patients with follicular
lymphoma with more or less rituximab, in a "rituximab on-demand," as
opposed to a "rituximab automatically" maintenance strategy." (http://www.medscape.com/viewarticle/756077)
Perhaps it's time for a second opinion!
Here's a good video summarizing the recent research:
http://www.youtube.com/watch?v=EFU7bVSZDxA with Dr. Brad Kahl about patients like me with no symptoms. My notes from video:
Re-treatment was the preferred strategy: less toxicity, equal quality of life. 16 doses vs 4 doses with 1/4 the treatment. But results are very close. It just comes down to trade-offs. Patients have different coping styles. Patients can be comfortable with "watch and wait" and others are never comfortable with that strategy. Concern with Rituxan exposure will deplete immunoglobulin levels and make them more prone to infection. With maintenance immunoglobulin levels keep up even with prolonged exposure, up to 7 years. Creating Rituxan resistance with prolonged exposure? No evidence of that.
Sunday, December 22, 2013
I found a prognosticator online and this is what it said, if I put in the correct information.
Prognosis depends on the sum of 5 factors: number of Nodal areas, LDH, Age, Stage, and Hemoglobin level. Hence, the mnemonic NoLASH may be useful to remember the factors.
If the score is 0 to 1, the patient is considered "low risk" according to the FLIPI. Overall survival at 10 years is estimated to be 70%. If the score is 2, the patient is considered "intermediate risk" according to the FLIPI. Overall survival at 10 years is estimated to be 50%. If the score is ≥ 3, the patient is considered "high risk" according to the FLIPI. Overall survival at 10 years is estimated to be 35%.
Prognosis in Follicular Lymphoma Using the Follicular Lymphoma International Prognostic Index (FLIPI)
This patient is considered intermediate risk according to the FLIPI. Overall survival at 10 years is estimated to be 50%.About this calculator
The Follicular Lymphoma International Prognostic Index (FLIPI) is the result of a large international cooperative effort in which clinical data was collected from 4167 patients with FL diagnosed between 1985 and 1992. From this database, a prognostic index with five adverse factors was derived and validated. The index is able to separate 3 risk groups of approximately eqaul size with clear differentiation of long-term prognosis.Prognosis depends on the sum of 5 factors: number of Nodal areas, LDH, Age, Stage, and Hemoglobin level. Hence, the mnemonic NoLASH may be useful to remember the factors.
If the score is 0 to 1, the patient is considered "low risk" according to the FLIPI. Overall survival at 10 years is estimated to be 70%. If the score is 2, the patient is considered "intermediate risk" according to the FLIPI. Overall survival at 10 years is estimated to be 50%. If the score is ≥ 3, the patient is considered "high risk" according to the FLIPI. Overall survival at 10 years is estimated to be 35%.
Tuesday, August 13, 2013
Getting hooked up
I have been going to the center for Vitamin C infusions for 3 weeks now. I hoped it would only take an hour but it's more like an hour and 45 minutes--even with a phone call ahead to try and get the pharmacy there to get the infusion ready for me. It's no fun getting poked (since I don't have a port) and the vitamin is cold which causes my arm to hurt. So they give me a heating pad but that causes the tape holding down the needle to stick to my skin and hurt like the devil to take off. One thing always causes another thing, right? But once it's done it's an hour to relax. I drifted off, listening to my book on my mp3 player, until someone's phone woke me up.
I am supposed to keep getting Vitamin C until the next scan which I think is in 6 months. That's a lot of time to spend there, hooked up, so to speak! Others are there getting the same thing. The study they are doing that proves that this treatment helps keep the lymphoma from worsening is coming out soon.
I am supposed to keep getting Vitamin C until the next scan which I think is in 6 months. That's a lot of time to spend there, hooked up, so to speak! Others are there getting the same thing. The study they are doing that proves that this treatment helps keep the lymphoma from worsening is coming out soon.
Thursday, July 25, 2013
Explanation of the good news
I had my visit today with Dr. Reilly, the naturopath, and Dr. Chen, the oncologist. It all looks very good but they both want me to get weekly infusions of Vitamin C. That's okay with me but it will get expensive since the insurance industry does not recognize anything to do with the word "vitamin". So it will get expensive.
But the good--should I say great--news was shown in the report from the PET scan from Via Radiology in medical-ese such as:
Head and neck: There is evidence of complete and morphologic and metabolic response with resolution of any pathologic FDG (fluorodeoxyglucose) uptake* in the head and neck (i.e., nothing glowed).
Chest: No significant lymphadenopathy is detected.
Abdomen and pelvis: All of the previously present hypermetabolic lympho nodes have resolved..."
Muscoskeletal: No pathologic FDG uptake is identified.
For an added bonus, my spleen has diminished slightly in size, from 13.4 cm to 12.2 cm. I didn't even know it was enlarged!
*On a PET scan, "uptake" refers to uptake of the radioactive tracer. In layman's terms, a PET scan works something like this: a sugar molecule with a radioactive tracer attached is injected into the bloodstream. Active cells (including cancer cells) utilize sugar more than surrounding less active cells. These active cells take up the sugar and the tracer at a faster rate and glow more brightly on the scan. The intensity at which these cells "glow" on the scan is referred to as the uptake. A SUV is a standard uptake value. The higher the number, the more tracer was taken up.
It is important to note that just because "uptake" is seen on a scan does not mean there is cancer. Various things such as thymic rebound, infection, inflammation, brown fat, etc. can also cause uptake to be seen on a PET scan. The PET scan simply measures metabolic activity. What that metabolic activity means requires a good radiologist to read the scan and often a biopsy to confirm the presence of disease versus inflammation or one of the other possibilities I mentioned.
from Mozartsmom on http://forums.lymphoma.com/showthread.php?t=46313
But the good--should I say great--news was shown in the report from the PET scan from Via Radiology in medical-ese such as:
Head and neck: There is evidence of complete and morphologic and metabolic response with resolution of any pathologic FDG (fluorodeoxyglucose) uptake* in the head and neck (i.e., nothing glowed).
Chest: No significant lymphadenopathy is detected.
Abdomen and pelvis: All of the previously present hypermetabolic lympho nodes have resolved..."
Muscoskeletal: No pathologic FDG uptake is identified.
For an added bonus, my spleen has diminished slightly in size, from 13.4 cm to 12.2 cm. I didn't even know it was enlarged!
*On a PET scan, "uptake" refers to uptake of the radioactive tracer. In layman's terms, a PET scan works something like this: a sugar molecule with a radioactive tracer attached is injected into the bloodstream. Active cells (including cancer cells) utilize sugar more than surrounding less active cells. These active cells take up the sugar and the tracer at a faster rate and glow more brightly on the scan. The intensity at which these cells "glow" on the scan is referred to as the uptake. A SUV is a standard uptake value. The higher the number, the more tracer was taken up.
It is important to note that just because "uptake" is seen on a scan does not mean there is cancer. Various things such as thymic rebound, infection, inflammation, brown fat, etc. can also cause uptake to be seen on a PET scan. The PET scan simply measures metabolic activity. What that metabolic activity means requires a good radiologist to read the scan and often a biopsy to confirm the presence of disease versus inflammation or one of the other possibilities I mentioned.
from Mozartsmom on http://forums.lymphoma.com/showthread.php?t=46313
 |
| A 74 year old man with lymphoma |
Monday, July 22, 2013
My News
FANTASTIC news! The doctor called me the day after the PET scan and even he was excited! He is usually so dry and scientific, not emotional. He said, "All the cancer activities have almost all disappeared!"
I had a wonderful weekend, felt lighter and healthy. Thank you, Dr. Chen, for calling me right away and before my trip to Vancouver!
I go in Thursday to talk to him about what happens next.
I had a wonderful weekend, felt lighter and healthy. Thank you, Dr. Chen, for calling me right away and before my trip to Vancouver!
I go in Thursday to talk to him about what happens next.
Thursday, July 11, 2013
Sixth treatment a breeze
I had my last of 6 treatments yesterday and it was easy. No pain except for the doctor digging his fingers into my armpit! He said he couldn't feel the big lymph node that he has felt before. That sounds good but I won't know for sure for 2 more weeks. The PET scan is scheduled for Thursday. Then I will meet with the oncologist the Thursday after that.
Even if everything looks good--if the tumors have decreased in size or (fingers crossed) disappeared, the naturopath still may want me to come in for Vitamin C infusions. I just learned that yesterday and it surprised me. But if it helps...
It's kind of sad but I feel so lucky to have insurance to pay for all this. What if you don't...?
This is my nurse Sue, aka SueBee, as she is always busy as a bee.
Even if everything looks good--if the tumors have decreased in size or (fingers crossed) disappeared, the naturopath still may want me to come in for Vitamin C infusions. I just learned that yesterday and it surprised me. But if it helps...
It's kind of sad but I feel so lucky to have insurance to pay for all this. What if you don't...?
This is my nurse Sue, aka SueBee, as she is always busy as a bee.
Monday, July 8, 2013
Treanda
Oh, boy, I hope I don't have to get Treanda. The minor side effects might include:
- mild nausea, vomiting, diarrhea, constipation, or upset stomach;
- swelling in your hands or feet;
- headache, dizziness, drowsiness;
- loss of appetite, weight loss; or
- mild skin rash.
Wednesday, July 3, 2013
blood tests
The Center gives me the results of my latest blood tests each week before the end of my visit. Today I didn't have a single mark in the "FLAG" column which means ALL of my blood results come in normal. Hooray, I LOVE being normal, always have, since my family was so far from normal or average!
The things that were flagged on my visit May 15th were many but that was a much more extensive test, mostly about my very high cholesterol. More recently, on 6/20, my BUN /Creatinine Ratio was flagged as being too high. It went from 29 to 18. Hey, I don't know what it is but I assume the improvement is from the Leukine. Hmm, but it was 15 on 12/29/2009. (Okay, I just looked it up and found out it has to do with kidney function and dehydration. I remember a librarian friend saying she'd like to outlaw webMD which is where I read it!)
The more I learn the less I understand...
And then there's the big ugly bruise on my left foot and little toe that I don't remember the cause of. Is that a symptom of nHL? It is, indeed:
Easy bruising or bleeding (from low blood platelet counts)
The things that were flagged on my visit May 15th were many but that was a much more extensive test, mostly about my very high cholesterol. More recently, on 6/20, my BUN /Creatinine Ratio was flagged as being too high. It went from 29 to 18. Hey, I don't know what it is but I assume the improvement is from the Leukine. Hmm, but it was 15 on 12/29/2009. (Okay, I just looked it up and found out it has to do with kidney function and dehydration. I remember a librarian friend saying she'd like to outlaw webMD which is where I read it!)
The more I learn the less I understand...
And then there's the big ugly bruise on my left foot and little toe that I don't remember the cause of. Is that a symptom of nHL? It is, indeed:
Easy bruising or bleeding (from low blood platelet counts)
"It's not chemo, it's monoclonal antibodies"
It's all getting very routine which is comforting, mostly. Today the infusion went well except for a little pain when Connor put the needle in (we discussed ports, cousin Verandah, but they are not having trouble with my veins and I only have one more infusion planned) and some stabbing pain with the Benadryl.
People are so used to chemo being the only option. They look at me and say I look fine, clearly used to the horrors of chemo side effects. I feel I have to at least tell them that I am NOT doing chemo but we need to see how the PET scan comes out--i may need to do Treanda but I'm hoping not. I am clinging to something the naturopath said, that he would be "shocked" if the lymphoma/tumors have not disappeared after 6 treatments with Rituxan (plus Vitamin C and Leukine). Is that really what he said, Steve? And then you have to wonder, how often is he shocked?
People are so used to chemo being the only option. They look at me and say I look fine, clearly used to the horrors of chemo side effects. I feel I have to at least tell them that I am NOT doing chemo but we need to see how the PET scan comes out--i may need to do Treanda but I'm hoping not. I am clinging to something the naturopath said, that he would be "shocked" if the lymphoma/tumors have not disappeared after 6 treatments with Rituxan (plus Vitamin C and Leukine). Is that really what he said, Steve? And then you have to wonder, how often is he shocked?
Wednesday, June 26, 2013
Pink for the decision against DOMA
Settling into the routine, at least for the remaining treatments (#4,5,6). I may even be able to learn how to inject myself in the subcutaneous fat, not in the muscle, which has been giving me a small rash, very itchy.
I have Connor for my nurse again this week. He's a big man who can easily get away with wearing a bright pink uniform (boys used to wear pink and girls blue a hundred years ago-even as late as 1918 it was stated in a government publication that pink was best for boys and blue, being a dainty color, best for girls). Nurses don't wear pastel colors anymore? We can hear him talking about going to the Fremont Solstice Parade to another patient. We can hear everything so I am listening to Pandora except when I want to hear the young handsome doctor (perhaps) with the Eastern European accent.
So I have two more infusions, numbers 5 & 6, and then I get another PET scan to see if there has been progress. If not, I will have two more sessions of Rituxan and maybe get that other drug which is more like chemo in that there are side effects. My only complaint now is the red itchy spots on my tummy from the injections.
I have Connor for my nurse again this week. He's a big man who can easily get away with wearing a bright pink uniform (boys used to wear pink and girls blue a hundred years ago-even as late as 1918 it was stated in a government publication that pink was best for boys and blue, being a dainty color, best for girls). Nurses don't wear pastel colors anymore? We can hear him talking about going to the Fremont Solstice Parade to another patient. We can hear everything so I am listening to Pandora except when I want to hear the young handsome doctor (perhaps) with the Eastern European accent.
Thursday, June 20, 2013
It was probably the lettuce
I'm settling into a routine with the third treatment and that's nice. Even comforting. It helped that the weather today was blustery and cool so I wasn't sitting there longing to be outside on my day off. But I had no side effects today. It appears that last week both Steve and I got food poisoning from lunch after treatment. Ha, so it wasn't the Leukine, it was the lettuce!
The routine: ouch goes the needle in my hand or wrist, in goes the Vitamin C, pop two Tylenol and in goes the Benadryl (I didn't even feel drunk from it this time), where is the Rituxan? There it is, saline first, then the monoclonal antibodies, and now I can watch the monitor to see approximately how much longer I have to sit. Today I was alarmed to see the tube turn red after the Vitamin C and the walk down the hall to see Dr Chen: I "bled out" when the bag ended and there was nothing coming in so gravity dictated that something go out. It wouldn't be a problem unless an hour passed and it hardened. You medical people probably understand it a lot better than me but a little saline solution and again it was clear. Except to me.
And two needles of Leukine to take home with me. I can't say I don't have anything planned for my Friday and Saturday nights!
The routine: ouch goes the needle in my hand or wrist, in goes the Vitamin C, pop two Tylenol and in goes the Benadryl (I didn't even feel drunk from it this time), where is the Rituxan? There it is, saline first, then the monoclonal antibodies, and now I can watch the monitor to see approximately how much longer I have to sit. Today I was alarmed to see the tube turn red after the Vitamin C and the walk down the hall to see Dr Chen: I "bled out" when the bag ended and there was nothing coming in so gravity dictated that something go out. It wouldn't be a problem unless an hour passed and it hardened. You medical people probably understand it a lot better than me but a little saline solution and again it was clear. Except to me.
And two needles of Leukine to take home with me. I can't say I don't have anything planned for my Friday and Saturday nights!
Thursday, June 13, 2013
I'm doing so much better this time around: no side effects so far and I am an hour into the Rituxan. The Vitamin C has been given and I had some minor hand aches where they put the IV.
Maybe I won't even get the chills tonight. I dare to hope. (later: no chills but I did have a bout of stomach ache and diarrhea, which I thought was from the Leukine, but seems to have been food poisoning since both Steve and I felt sick after our late lunch)
I will be giving myself shots of Leukine for the next 3 days, as my insurance pays for "injection benefits".
Dr. Chen felt both of my armpits and could still feel the enlarged node in the left one. He said we might do Treanda along with the Rituxan if the node doesn't go away or become less prominent. But Treanda usually has more side effects than Rituxan.
I see the traffic on 405 is stopped and I would almost rather be here, relaxing in my LaZ-boy lounger, than out there.
Maybe I won't even get the chills tonight. I dare to hope. (later: no chills but I did have a bout of stomach ache and diarrhea, which I thought was from the Leukine, but seems to have been food poisoning since both Steve and I felt sick after our late lunch)
I will be giving myself shots of Leukine for the next 3 days, as my insurance pays for "injection benefits".
Dr. Chen felt both of my armpits and could still feel the enlarged node in the left one. He said we might do Treanda along with the Rituxan if the node doesn't go away or become less prominent. But Treanda usually has more side effects than Rituxan.
I see the traffic on 405 is stopped and I would almost rather be here, relaxing in my LaZ-boy lounger, than out there.
Friday, June 7, 2013
Life causes side effects
Looks like I had all of the typical side effects except for the headache. They told me that the side effects are expected to diminish as you continue the treatment. Is that like when I got my legs waxed in South America and they said it would hurt less the next time (and it didn't)? But next time they will be giving me Vitamin C intravenously (takes an hour) and will that hurt or cause side effects? And the Benadryl (a whopping 25 mg, equivalent to taking 25 pills-note: we got this wrong. It was just the same as taking a normal dose but because it goes in the veins, it effects you more than being mixed with gastric juices) caused arm pain and a feeling of drunkenness (admittedly, not unpleasant). Does anything NOT cause side effects?
Rituxan IV Side Effects
Headache, fever, chills, nausea, heartburn, flushing, weakness, or dizziness may occur. If any of these effects persist or worsen, contact your doctor or pharmacist promptly.
Thursday, June 6, 2013
so far, so so
About 1 hour into the first treatment I started feeling pretty sick: sore throat, sore eyes and most of all, a bad stomach ache or acid reflux. So they stopped the Rituxan and gave me some Tums and after a half hour I felt better and was able to eat the Mongolian beef that Steve had gone out to buy for us. Now they have increased the amount they large giving me, from a cautious 25 ml per hour to 125 per hour. Halfway through!
Wednesday, June 5, 2013
If you're wondering what Leukine is...
Rituxan® plus Leukine® Promising for Low-grade Lymphomas
NHL is characterized by the excessive accumulation of atypical (cancerous) lymphocytes. These lymphocytes can crowd the lymph system and suppress the formation and function of other immune and blood cells. (wow, I don't think I've yet read such a clear and simple definition of NHL) NHL is categorized by the type of lymphocyte it involves and by the rate at which the cancer grows. Follicular lymphoma comprises 30% of all NHL diagnoses and is considered a low-grade or indolent lymphoma, which means that it is a slow-growing form of lymphoma.
Rituxan is a targeted therapy that binds to specific components of B-lymphocytes, the most common cancerous cells in NHL. The binding of Rituxan to the B-lymphocytes ultimately causes the destruction of the cancer cells. Rituxan is a commonly used agent in the treatment of various forms of NHL. Researchers continue to evaluate ways to improve anticancer responses to Rituxan.
Leukine is a growth factor, or cytokine, which is an agent that can stimulate the immune system to help fight or prevent infection or disease. It is commonly used among patients with leukemia who are undergoing stem cell transplantation. Leukine is also thought to have properties that improve Rituxan’s cancer-killing effects by stimulating the immune system. Side effects associated with Leukine are generally mild to moderate.
Researchers from France recently conducted a clinical trial to further evaluate Rituxan plus Leukine in the treatment of low-grade lymphomas. This trial included 46 patients, 39 of whom had follicular NHL. Forty patients had received prior therapy and experienced a relapse of their cancer.
http://cancerconnect.com/
NHL is characterized by the excessive accumulation of atypical (cancerous) lymphocytes. These lymphocytes can crowd the lymph system and suppress the formation and function of other immune and blood cells. (wow, I don't think I've yet read such a clear and simple definition of NHL) NHL is categorized by the type of lymphocyte it involves and by the rate at which the cancer grows. Follicular lymphoma comprises 30% of all NHL diagnoses and is considered a low-grade or indolent lymphoma, which means that it is a slow-growing form of lymphoma.
Rituxan is a targeted therapy that binds to specific components of B-lymphocytes, the most common cancerous cells in NHL. The binding of Rituxan to the B-lymphocytes ultimately causes the destruction of the cancer cells. Rituxan is a commonly used agent in the treatment of various forms of NHL. Researchers continue to evaluate ways to improve anticancer responses to Rituxan.
Leukine is a growth factor, or cytokine, which is an agent that can stimulate the immune system to help fight or prevent infection or disease. It is commonly used among patients with leukemia who are undergoing stem cell transplantation. Leukine is also thought to have properties that improve Rituxan’s cancer-killing effects by stimulating the immune system. Side effects associated with Leukine are generally mild to moderate.
Researchers from France recently conducted a clinical trial to further evaluate Rituxan plus Leukine in the treatment of low-grade lymphomas. This trial included 46 patients, 39 of whom had follicular NHL. Forty patients had received prior therapy and experienced a relapse of their cancer.
- Anticancer responses occurred in 70% of patients with relapsed NHL with in 45% demonstrating a complete disappearance of detectable cancer.
- 100% of the six patients who had not received prior therapies experienced anticancer responses.
- The median progression-free survival for patients who had relapsed NHL was nearly 17 months.
http://cancerconnect.com/
Sunday, June 2, 2013
It's not chemo, but...
I will get the first treatment of Rituxan on Thursday. The first treatment (of 6-8) will take about 5 hours because they titrate the medicine to make sure the patient doesn't have allergic responses or other side effects. In the I.V. will also be Vitamin C (I think he said 25 mg.) that they find helps the Rituxan. They will also be giving me "leukine" to help with possible lowering of my WBC which is already low.
I get to pick a curtained off lounge chair or one in a big sunny room where patients do jigsaw puzzles on the table in the middle. I can use their WIFI to access the web. Right now I am watching "Scott & Bailey" about the two female detectives (BBC) and I'm starting season 2 so that is something to look forward to. Perhaps music would be more relaxing though!
I will be getting weekly treatments but they will only take an hour or two after the first week when they know how my body reacts to the medicine.
I feel lucky that Rituxan is now available since it hasn't been on the market for that long. Only three years to wait for Lybrido to go on the market (Viagra for women)!
"Rituxan is one of those drugs that has definitely proven its worth over time. Used in combination with other chemo drugs [and often times alone], it has increased the period of progression free survival (PFS), and the overall survival (OS) for those suffering from leukemia or lymphoma.
But despite being a wonder drug, and not really considered chemotherapy per se, that doesn’t mean it isn’t without its side effects and complications."
http://livingwithmcl.com/2011/03/08/rituxan-its-not-chemo-but/
I get to pick a curtained off lounge chair or one in a big sunny room where patients do jigsaw puzzles on the table in the middle. I can use their WIFI to access the web. Right now I am watching "Scott & Bailey" about the two female detectives (BBC) and I'm starting season 2 so that is something to look forward to. Perhaps music would be more relaxing though!
I will be getting weekly treatments but they will only take an hour or two after the first week when they know how my body reacts to the medicine.
I feel lucky that Rituxan is now available since it hasn't been on the market for that long. Only three years to wait for Lybrido to go on the market (Viagra for women)!
"Rituxan is one of those drugs that has definitely proven its worth over time. Used in combination with other chemo drugs [and often times alone], it has increased the period of progression free survival (PFS), and the overall survival (OS) for those suffering from leukemia or lymphoma.
But despite being a wonder drug, and not really considered chemotherapy per se, that doesn’t mean it isn’t without its side effects and complications."
http://livingwithmcl.com/2011/03/08/rituxan-its-not-chemo-but/
Thursday, May 30, 2013
Big Bugaboo of Sugar
Sugar feeds cancer? Or it doesn't. Even if you manage to avoid sugar (fruit counts), cancer cells will feed on something else. You'd have to starve yourself to starve cancer and then you'd suffer anyway.
But what is the truth?Is there such a thing?
http://www.philly.com/philly/blogs/patient1/Patient-1-Eating-to-live-longer.html
I touched on the “cancer diet” in a previous post, but for posterity and those too busy to go read about vegetables, it breaks down like this – with the help of a nutritionist friend, I am on a pretty strict diet that features raw (and some cooked) veggies, limited fruit, some fish, lots of beans, a little egg, some nuts, and oh yea, more veggies. Gone from the pantry – animal meat, all dairy (giving up yogurt was tough), almost all processed foods, and sugar. Not just refined sugar, but really anything that spikes your blood sugar – hence the limited fruits. Her words to me were: “sugar feeds cancer.”
I had a visit with my naturopath at Seattle Cancer Treatment and Wellness Center and I will indeed not be eating sugar. Or even dairy, once I get through the yogurt I just bought. He wants me to challenge dairy: stop dairy for at least two weeks and then eat a lot of it. Gladly! The Primal diet includes a lot of meat but I don't know that much about it yet. So much to read!
 |
| http://curecancer73-don.blogspot.com/2012/12/cancer-feeds-on-sugar-acidic-cells-get.html |
http://www.philly.com/philly/blogs/patient1/Patient-1-Eating-to-live-longer.html
I touched on the “cancer diet” in a previous post, but for posterity and those too busy to go read about vegetables, it breaks down like this – with the help of a nutritionist friend, I am on a pretty strict diet that features raw (and some cooked) veggies, limited fruit, some fish, lots of beans, a little egg, some nuts, and oh yea, more veggies. Gone from the pantry – animal meat, all dairy (giving up yogurt was tough), almost all processed foods, and sugar. Not just refined sugar, but really anything that spikes your blood sugar – hence the limited fruits. Her words to me were: “sugar feeds cancer.”
I had a visit with my naturopath at Seattle Cancer Treatment and Wellness Center and I will indeed not be eating sugar. Or even dairy, once I get through the yogurt I just bought. He wants me to challenge dairy: stop dairy for at least two weeks and then eat a lot of it. Gladly! The Primal diet includes a lot of meat but I don't know that much about it yet. So much to read!
Thursday, May 23, 2013
Is Non-Hodgkin's Lymphoma famous enough?
Understandably, the general public is not aware of
lymphoma and many do not know what it is. Those who
know, will believe it is something that happens to someone else. I know that I did not give it a
moment's thought until 1996. ~ Karl Schwartz
http://www.nytimes.com/2013/05/19/opinion/sunday/disease-and-the-public-eye.html?pagewanted=all&_r=0
Disease and the Public Eye, NYT, 5/19/13
"I’ve spent a lot of time since my diagnosis wondering how we learn about certain diseases, and why some become part of the public conversation while others (like dystonia) do not. It’s odd to find yourself envying people who have diseases that get more attention than yours. But I can’t help it."
http://www.nytimes.com/2013/05/19/opinion/sunday/disease-and-the-public-eye.html?pagewanted=all&_r=0
Disease and the Public Eye, NYT, 5/19/13
"I’ve spent a lot of time since my diagnosis wondering how we learn about certain diseases, and why some become part of the public conversation while others (like dystonia) do not. It’s odd to find yourself envying people who have diseases that get more attention than yours. But I can’t help it."
Monday, May 20, 2013
Eat More Carbs
Low Carb Diet linked to non-Hodgkin's Lymphoma? I found an article almost ten years ago saying that a low carb diet might be linked to the rise of lymphoma. How can that be?
March 9, 2004 -- What's causing America's huge surge in blood cancer? It might be our diet. It's called non-Hodgkin's lymphoma. It's a killer collection of different white-blood-cell cancers. And it's a mystery why it's been increasing so quickly in the U.S. and other parts of the world.
Now there's a clue. It comes from a study of 601 Connecticut women with non-Hodgkin's lymphoma. Tongzhang Zheng, ScD, head of the division of environmental health sciences at the Yale School of Public Health in New Haven, Conn., collected detailed dietary information from these women and from 717 similar women without cancer.
"What we found is if a person has a higher intake of animal protein, they will have a higher risk of non-Hodgkin's lymphoma," Zheng tells Web. "And people who have a higher intake of saturated fat have an increased risk. On the other hand, if you have higher-than-average intake of dietary fiber -- particularly if you frequently eat vegetables and fruits with a high fiber content -- you have a reduced risk of non-Hodgkin's lymphoma."
The findings appear in the March 1 issue of the American Journal of Epidemiology.
Earlier studies hinted at the same thing. Now, Zheng says, it seems clear that a major factor in the mysterious rise of non-Hodgkin's lymphoma is a diet high in meat, saturated fats, dairy products, and eggs and low in fiber, fruits, and vegetables.
Unbalanced Diet, Unhealthy Body
In the U.S., three kinds of cancer have skyrocketed in recent decades. One is lung cancer, mainly caused by smoking. Another is skin cancer, caused by too much sun. The third is non-Hodgkin's lymphoma. But nobody knows why it's on the rise, says Nancy Mueller [pronounced MULL-er], ScD, associate director of population sciences at Harvard's Dana-Farber Cancer Center.
"Non-Hodgkin's lymphoma is a basket of related diseases," Mueller tells WebMD. "It probably has a set of causal factors that may be related to one another, but not in a simple way. We can't really explain it -- this is a really hard nut to crack. But what is happening to the American is associated with a number of malignancies such as breast, kidney, and colon cancer. Higher body weight is a common theme."
http://forum.lowcarber.org/archive/index.php/t-171868.html
There are some hilarious rebuttals, including how the loss of the ozone layer is caused by low carb diets. Seems just as likely to the writer of the comment.
March 9, 2004 -- What's causing America's huge surge in blood cancer? It might be our diet. It's called non-Hodgkin's lymphoma. It's a killer collection of different white-blood-cell cancers. And it's a mystery why it's been increasing so quickly in the U.S. and other parts of the world.
Now there's a clue. It comes from a study of 601 Connecticut women with non-Hodgkin's lymphoma. Tongzhang Zheng, ScD, head of the division of environmental health sciences at the Yale School of Public Health in New Haven, Conn., collected detailed dietary information from these women and from 717 similar women without cancer.
"What we found is if a person has a higher intake of animal protein, they will have a higher risk of non-Hodgkin's lymphoma," Zheng tells Web. "And people who have a higher intake of saturated fat have an increased risk. On the other hand, if you have higher-than-average intake of dietary fiber -- particularly if you frequently eat vegetables and fruits with a high fiber content -- you have a reduced risk of non-Hodgkin's lymphoma."
The findings appear in the March 1 issue of the American Journal of Epidemiology.
Earlier studies hinted at the same thing. Now, Zheng says, it seems clear that a major factor in the mysterious rise of non-Hodgkin's lymphoma is a diet high in meat, saturated fats, dairy products, and eggs and low in fiber, fruits, and vegetables.
Unbalanced Diet, Unhealthy Body
In the U.S., three kinds of cancer have skyrocketed in recent decades. One is lung cancer, mainly caused by smoking. Another is skin cancer, caused by too much sun. The third is non-Hodgkin's lymphoma. But nobody knows why it's on the rise, says Nancy Mueller [pronounced MULL-er], ScD, associate director of population sciences at Harvard's Dana-Farber Cancer Center.
"Non-Hodgkin's lymphoma is a basket of related diseases," Mueller tells WebMD. "It probably has a set of causal factors that may be related to one another, but not in a simple way. We can't really explain it -- this is a really hard nut to crack. But what is happening to the American is associated with a number of malignancies such as breast, kidney, and colon cancer. Higher body weight is a common theme."
http://forum.lowcarber.org/archive/index.php/t-171868.html
There are some hilarious rebuttals, including how the loss of the ozone layer is caused by low carb diets. Seems just as likely to the writer of the comment.
Wednesday, May 15, 2013
How does rituximab work?
How does rituximab work? No one knows for sure (much like the IUD)!
This is from Ben Townsend's blog or so I'm guessing:
Rituximab (also known as Rituxan) is emerging as the frontline treatment of Follicular Lymphoma. I have attempted to understand this drug and how it works. It is called a Monoclonal Antibody (thus the “-mab” of Rituximab). Somehow it attaches itself to a cancer cell and causes that cell to be destroyed. The testing at present is attempting to show that the “watchful waiting” until the Lymphoma grows may be a thing of the past. Clinical trials are showing that starting off with Rituximab every two months for a few years keeps the Cancer at bay for approximately 7 to 8 years, much longer than any other treatment has done in the past. This is known as treating the Lymphoma “asymptomatic” (before any symptoms show up). The side effects of Rituximab are much less that Chemotherapy. However, sometimes Rituximab is used in conjunction with Chemotherapy. My Oncologist, the brilliant Dr. Kosinski, told me that adding the Chemotherapy causes the Rituximab to have a 90% effect on the Cancer cells, while the Rituximab alone offers a 60% effect.
Still, it is not known exactly how the Rituximab causes the destruction (a process called “Lysis”) of the Cancer cell. It may cause the cell to be destroyed one of three ways or more.
The following pictures shows the portion of the cell that has the CD 20 Protein on it.
This is from Ben Townsend's blog or so I'm guessing:
Rituximab (also known as Rituxan) is emerging as the frontline treatment of Follicular Lymphoma. I have attempted to understand this drug and how it works. It is called a Monoclonal Antibody (thus the “-mab” of Rituximab). Somehow it attaches itself to a cancer cell and causes that cell to be destroyed. The testing at present is attempting to show that the “watchful waiting” until the Lymphoma grows may be a thing of the past. Clinical trials are showing that starting off with Rituximab every two months for a few years keeps the Cancer at bay for approximately 7 to 8 years, much longer than any other treatment has done in the past. This is known as treating the Lymphoma “asymptomatic” (before any symptoms show up). The side effects of Rituximab are much less that Chemotherapy. However, sometimes Rituximab is used in conjunction with Chemotherapy. My Oncologist, the brilliant Dr. Kosinski, told me that adding the Chemotherapy causes the Rituximab to have a 90% effect on the Cancer cells, while the Rituximab alone offers a 60% effect.
Still, it is not known exactly how the Rituximab causes the destruction (a process called “Lysis”) of the Cancer cell. It may cause the cell to be destroyed one of three ways or more.
- The first way is Apoptosis, which causes the Cancer cell to induce it’s own death (kind of like suicide).
- The second way is called Antibody-dependent Cell-mediated Cytotoxicity (ADCC), where the NK (Natural Killer) cells send a signal to the target cell, causing it to die.
- Third, a Complement-dependent Cytoxicity (CDC) which is where holes are punched into the Cancer cell, causing that cell’s death. Also, Rituximab sends a signal to the Cancer cell to stop dividing. All we really do know is that the Rituximab attaches itself to a strand that comes out of the Cancer cell known as the “CD20 Protein.” This long strand loops out of the cell and then back into the cell.
The following pictures shows the portion of the cell that has the CD 20 Protein on it.
What we do know is that this stuff is expensive: Rituxan is costly. It costs about $10,000.00 a treatment, which is simply getting an IV bag of saline with about 750 milligrams of Rituxan in it. 750 mg is equal to about 25 ounces. The normal Rituxan treatment is one IV every two months for two years, or 12 treatments.
Causation
This is the first explanation of a possible cause of non-Hodgkin's lymphoma that makes sense to me:
"If you have celiac disease, you also likely have a higher-than-normal risk of developing non-Hodgkin lymphoma. If you have non-celiac gluten sensitivity, at least one study has shown that you, too, may have a higher risk of non-Hodgkin lymphoma. However, the evidence is far less clear for those with gluten sensitivity.
It's not clear exactly how many people with celiac disease will develop non-Hodgkin lymphoma over their lifetimes. One study — which looked at the incidence of lymphoma and similar disorders at the Columbia University Celiac Disease Center — found 40 cases of non-Hodgkin lymphoma out of 1,285 celiac patients seen at the center between 1981 and 2010, for a rate of 3.1 percent."*
A gluten free diet does not even help people with "refractory celiac disease"! That's news to me.
So although I haven't ever been diagnosed with celiac, I do seem to have gluten sensitivity. But isn't driving through smog choked Elizabeth, N.J. (on the way to see grandma) more lethal than years of eating gluten?
*http://celiacdisease.about.com/od/commoncomplicationsofcd/a/Celiac-Disease-Lymphoma.htm
"If you have celiac disease, you also likely have a higher-than-normal risk of developing non-Hodgkin lymphoma. If you have non-celiac gluten sensitivity, at least one study has shown that you, too, may have a higher risk of non-Hodgkin lymphoma. However, the evidence is far less clear for those with gluten sensitivity.
It's not clear exactly how many people with celiac disease will develop non-Hodgkin lymphoma over their lifetimes. One study — which looked at the incidence of lymphoma and similar disorders at the Columbia University Celiac Disease Center — found 40 cases of non-Hodgkin lymphoma out of 1,285 celiac patients seen at the center between 1981 and 2010, for a rate of 3.1 percent."*
A gluten free diet does not even help people with "refractory celiac disease"! That's news to me.
So although I haven't ever been diagnosed with celiac, I do seem to have gluten sensitivity. But isn't driving through smog choked Elizabeth, N.J. (on the way to see grandma) more lethal than years of eating gluten?
*http://celiacdisease.about.com/od/commoncomplicationsofcd/a/Celiac-Disease-Lymphoma.htm
Tuesday, May 14, 2013
Treatment after all
The second oncologist I saw just today at the Seattle Cancer Treatment and Wellness Center wants me to get 6-8 weeks of the drug rituximub (gotta learn to spell it!). So that was a shock. I am getting more blood tests and then will decide. Look up the possible side effects of this "miracle" drug and it's scary. At least it doesn't include hair loss!
Basically he disagreed that it was all indolent. Dr Chen thinks some of it may be more aggressive and we can head off a worse outcome.
For today I am starting taking reishi (mushroom) capsules as recommended by the naturopath and will fast tomorrow for a lipids blood test.
Sunday, May 12, 2013
Glad I'm part time: more time to see medical people
I'm going to see another oncologist on Tuesday and a naturopath. They work together. That sounds smart though I will be curious what form that takes.
How many doctors can one person see? No, it's not a tongue twister like How much Wood Can a Woodchuck chuck, etc.
It amazes me that my insurance will cover me almost completely for a diagnosis like this but will not pay for orthotics or a TMJ night guard.
As far as alternative medicine, I don't think I can eat blue cheese at night like Robert Miller suggests. It is not good for people who tend to get GERD (me) and the kind I got about choked me. Pick and choose, wait and see...
How many doctors can one person see? No, it's not a tongue twister like How much Wood Can a Woodchuck chuck, etc.
It amazes me that my insurance will cover me almost completely for a diagnosis like this but will not pay for orthotics or a TMJ night guard.
As far as alternative medicine, I don't think I can eat blue cheese at night like Robert Miller suggests. It is not good for people who tend to get GERD (me) and the kind I got about choked me. Pick and choose, wait and see...
Friday, May 3, 2013
Results of PET scan
So the results of the PET scan were relatively benign: some small lymph nodes, only slightly enlarged, in my neck and chest, only 1.5 cm instead of one cm.
It is a relief, yes. But the technologist at the radiology clinic said don't be alarmed if you have to come back in right away, it doesn't necessarily mean anything bad. What? She was unbearably cheerful! Why did she say "thank you" every time she left the room?
And the oncologist wants to see me back in four months. That seems so soon. If I've had this for ten years, why do another scan in such a short time?
He also was predictably dismissive of Miller and naturopathy, So I am determined to do as much as I can of the recommendations of Miller--walnuts, berries, Vitamin D, etc. because I do believe it is the right path. And healthier is always better. It's only common sense!
It is a relief, yes. But the technologist at the radiology clinic said don't be alarmed if you have to come back in right away, it doesn't necessarily mean anything bad. What? She was unbearably cheerful! Why did she say "thank you" every time she left the room?
And the oncologist wants to see me back in four months. That seems so soon. If I've had this for ten years, why do another scan in such a short time?
He also was predictably dismissive of Miller and naturopathy, So I am determined to do as much as I can of the recommendations of Miller--walnuts, berries, Vitamin D, etc. because I do believe it is the right path. And healthier is always better. It's only common sense!
Tuesday, April 30, 2013
It's like spelling mistakes
From Robert Miller's latest newsletter from Lymphoma Survival.com (to subscribers only):
"The purpose of gene profiling is to establish clues as to who is at the
greatest risk for a particular type of cancer based on identification of
"spelling mistakes" contained in a person's DNA."
Ironic that this cancer--or all cancers?--is due to what they call a spelling mistake! Me,
the grammar/spelling fascist that I am, the former 8th grade spelling champion!
PET scan
A positron emission tomography (PET) scan is an imaging test that
uses a radioactive substance called a tracer to look for disease in the
body. A PET scan shows how organs and tissues are working. This is different than magnetic resonance imaging (MRI) and computed tomography (CT), which show the structure of and blood flow to and from organ.
The dental school visit in the morning was definitely worse than the PET scan in the afternoon! I hate that dental dam and then they couldn't even finish the filling!
I was worried about lying there for an hour so I took the Valium ahead of time but it really wasn't a problem. I didn't sleep well the night before so I just fell asleep, at least for the hour that you are in a recliner in a darkened room while the sugar water is drawn to tumors. (A good argument for not eating sugar: don't feed any cancer that might be growing, however slowly) Being in the machine with my arms over my head was not great so I kept my eyes closed. They said each section took 3 minutes so that was only 24 minutes. For the 7 foot man it took a lot longer!
So until I learn the results in a couple of days, I'm trying not to worry. I am feeling good, the sun is out, whatever will be, will be (I love that song, Que Sera, Sera)!
The dental school visit in the morning was definitely worse than the PET scan in the afternoon! I hate that dental dam and then they couldn't even finish the filling!
I was worried about lying there for an hour so I took the Valium ahead of time but it really wasn't a problem. I didn't sleep well the night before so I just fell asleep, at least for the hour that you are in a recliner in a darkened room while the sugar water is drawn to tumors. (A good argument for not eating sugar: don't feed any cancer that might be growing, however slowly) Being in the machine with my arms over my head was not great so I kept my eyes closed. They said each section took 3 minutes so that was only 24 minutes. For the 7 foot man it took a lot longer!
So until I learn the results in a couple of days, I'm trying not to worry. I am feeling good, the sun is out, whatever will be, will be (I love that song, Que Sera, Sera)!
Sunday, April 7, 2013
Losing it
Is it something that will not bother me for years, just as I may have already had it for ten years? Do I regard it as a ticking time bomb or just as an incentive to get healthier?
I've lost 6 or 7 pounds in the last 6 weeks which took a lot of hard work and is quite a bit harder because of the plantar fasciitis. I think if I succeed in following Robert Miller's recommendations or the diet in the Abascal Way I will easily (is there such a thing for a middle-aged woman?) lose 7 more. That has to be good for someone with this diagnosis (I still prefer to say it that way then to use the L word).
Thursday, April 4, 2013
To tell or not to tell
Who to tell? You can't tell everyone in your life--that takes too much emotional energy. It takes energy just dealing with a friend's reaction. Of course they mean well and at times they are horrified, though I wish I could tell them JFGI and then we can talk.
Do you tell people in your yoga class (very small class, and regulars)? No. Do you tell friends you haven't talked to for months?
Maybe you don't really need to tell anyone who doesn't already know, at least not until--IF--you get symptoms. Then they might need to know why you don't look well.
Or is that what a blog is for, really? Just go read my blog and then we can talk. Better than Wikipedia!
Do you tell people in your yoga class (very small class, and regulars)? No. Do you tell friends you haven't talked to for months?
Maybe you don't really need to tell anyone who doesn't already know, at least not until--IF--you get symptoms. Then they might need to know why you don't look well.
Or is that what a blog is for, really? Just go read my blog and then we can talk. Better than Wikipedia!
Tuesday, April 2, 2013
Prognosis is a tricky thing
If you take a quick look at non-Hodgkin's lymphoma and its prognosis, you can get pretty alarmed.
According to the American Cancer Society, the overall 5-year relative survival rate for patients with non-Hodgkin’s lymphoma is 63% and the 10-year relative survival rate is 51%.
My form, called follicular lymphoma that is low grade or indolent, has better prospects. So you may have to put up with me a lot longer!
In general, the average survival rate for follicular lymphoma is 7 - 10 years, depending on other risk factors. New drug treatments, particularly monoclonal antibodies, have significantly improved survival rates. According to a recent study, 91% of patients with follicular lymphoma now survive the first 4 years after diagnosis, compared with 69% of patients treated in the past with older types of drugs.
So I have a better prognosis than most because we caught it early, it is slow-growing (I may have already had it for ten years, see blog about 2003), and there are no symptoms, no known spreading to other organs. Robert Miller and many others have lived with it for over 20 years. That's what I intend to do.
This is a good summary:
http://health.nytimes.com/health/guides/disease/non-hodgkins-lymphoma/prognosis.html
FYI:
Do you know there are 80 kinds of lymphoma? Yowee! Wikipedia: The 2008 World Health Organization "lists over 80 different forms of lymphomas in four broad groups."
According to the American Cancer Society, the overall 5-year relative survival rate for patients with non-Hodgkin’s lymphoma is 63% and the 10-year relative survival rate is 51%.
My form, called follicular lymphoma that is low grade or indolent, has better prospects. So you may have to put up with me a lot longer!
In general, the average survival rate for follicular lymphoma is 7 - 10 years, depending on other risk factors. New drug treatments, particularly monoclonal antibodies, have significantly improved survival rates. According to a recent study, 91% of patients with follicular lymphoma now survive the first 4 years after diagnosis, compared with 69% of patients treated in the past with older types of drugs.
So I have a better prognosis than most because we caught it early, it is slow-growing (I may have already had it for ten years, see blog about 2003), and there are no symptoms, no known spreading to other organs. Robert Miller and many others have lived with it for over 20 years. That's what I intend to do.
This is a good summary:
http://health.nytimes.com/health/guides/disease/non-hodgkins-lymphoma/prognosis.html
FYI:
Do you know there are 80 kinds of lymphoma? Yowee! Wikipedia: The 2008 World Health Organization "lists over 80 different forms of lymphomas in four broad groups."
Monday, April 1, 2013
Lymphatic system
Lymphatic comes from the Latin word lymphaticus, meaning "connected to water."
Who ever thinks of the effect of stress on their lymphatic system? For that matter, who ever thinks of their lymphatic system at all? That their lymph nodes form a "system"?
I've looked at a few YouTube videos. Some of them are too technical, some too brief, some are about handing over your life to God after the diagnosis. I am more likely to hand my life over to a naturopath.
Who ever thinks of the effect of stress on their lymphatic system? For that matter, who ever thinks of their lymphatic system at all? That their lymph nodes form a "system"?
Robert Miller of Lymphoma Survival.com talks about stress:
The organ that gets “engaged” to do the work of maintaining balance in the
body is the lymphatic system. If everything in life is in balance (wishful
thinking), there is generally adequate capacity in the system to get the job
done without over-taxing the immune system. BUT, when ANY of the factors
(masses) mentioned above become “abnormal”…either too much or too
little…the lymphatic system is over-stressed, day in and day out.
From Wikipedia:
The lymphatic system has multiple interrelated functions:
- It is responsible for the removal of interstitial fluid from tissues
- It absorbs and transports fatty acids and fats as chyle from the digestive system
- It transports white blood cells to and from the lymph nodes into the bones
- The lymph transports antigen-presenting cells (APCs), such as dendritic cells, to the lymph nodes where an immune response is stimulated.
I've looked at a few YouTube videos. Some of them are too technical, some too brief, some are about handing over your life to God after the diagnosis. I am more likely to hand my life over to a naturopath.
Friday, March 29, 2013
Mystery of my past health
I got a very interesting copy of 2003 test results which had the lymphoma word in it. I remember the awful cramps I used to get fairly regularly in the middle of the night that lasted for an hour. I have no idea if it was related or what happened to them. There are so many mysteries. This is what I wrote in my end of the year summary:
· I had 3 ultrasounds and 3 CT scans (one during a visit to the Harborview Hospital ER after a night of severe abdominal pains, probably caused by a kidney stone) for “enlarged abdominal lymph nodes”. Verdict: I don’t have lymphoma. So what is causing the enlarged nodes? Nobody knows yet.
So did the doctors just give up on finding out or did they feel they had done their job by eliminating lymphoma...and then were they wrong? Will I ever know? I want my oncologist (still feels strange to say "my") to hazard a guess. But if it had been lymphoma would that mean I've had it for at least 10 years and it truly is "indolent" which is what we already know about it.
Getting HealthyER
After reading most of a very long article, I went to a health food store and spent a lot of money buying what the author and survivor of lymphoma recommended. Red palm oil but I'm not sure what to do with it. I didn't get the Kelp capsules--can I just eat those seaweed snacks Trader Joe's makes instead? They are pretty tasty!
There are the unpronounceables: Resveratrol? Astaxanthin? but only from non-farmed salmon! It gets very complicated, getting healthy (healthier). I have to educate myself, apparently.
There are the unpronounceables: Resveratrol? Astaxanthin? but only from non-farmed salmon! It gets very complicated, getting healthy (healthier). I have to educate myself, apparently.
Wednesday, March 27, 2013
Stages of grief
FOLLICULAR LYMPHOMA: Median survival is around 10
years, but the range is wide, from less than one year, to more than 20 years. Some patients may never need treatment. The overall survival rate at 5 years is 72-77%.
years, but the range is wide, from less than one year, to more than 20 years. Some patients may never need treatment. The overall survival rate at 5 years is 72-77%.
It's only been a week, not even, since my diagnosis (and coincidentally since I got my new Google Nexus 4 phone) and it still seems unreal. Not as in, how can this be happening to me, but more like, maybe they made a mistake. Okay, those old five Kübler-Ross stages of grief, denial, etc. I'm definitely at denial:
Denial — "I feel fine."; "This can't be happening, not to me."
Denial is usually only a temporary defense for the individual. This feeling is generally replaced with heightened awareness of possessions and individuals that will be left behind after death. Denial can be conscious or unconscious refusal to accept facts, information, or the reality of the situation. Denial is a defense mechanism and some people can become locked in this stage.
Denial is usually only a temporary defense for the individual. This feeling is generally replaced with heightened awareness of possessions and individuals that will be left behind after death. Denial can be conscious or unconscious refusal to accept facts, information, or the reality of the situation. Denial is a defense mechanism and some people can become locked in this stage.
And then my woo woo friend C will tell me that Louise Hay says it means I'm missing the joy of life or something like that. And I say, grrrr, well, gimme some, then! but why give me cancer.
I'm in good company, I know...as people are wont to remind me. And it does rather amaze me, how many people have cancer.
And still no word from my father or younger brother since my email telling them my news.
Perhaps I'm rather fatalistic, though you know I'll try my damnedest to keep healthy.
Alternative therapy
It's been only 6 days and I have already had so many suggestions for treatment. I have 3 naturopaths to consult with. I have a suggestion of a kind of qigong (is a practice of aligning breath, movement, and awareness for exercise, healing, and meditation). I have the number of a friend's niece who has had this disease. I have many articles from Lymphoma Survival website, getting into obscure topics such as epigenetics (the study of changes in gene expression or cellular phenotype, caused by mechanisms other than changes in the underlying DNA sequence – hence the name epi- (Greek: επί- over, above, outer) -genetics, some of which are heritable) that require patience and perseverance to understand.
So how to sort through it all? I guess I have to go with what I instinctively feel is right for me. Easy to say but how else to proceed? I like the article that says doing nothing, the "wait and watch" the oncologist talked about, is "benign neglect".
So how to sort through it all? I guess I have to go with what I instinctively feel is right for me. Easy to say but how else to proceed? I like the article that says doing nothing, the "wait and watch" the oncologist talked about, is "benign neglect".
Tuesday, March 26, 2013
How I found out
2012
Ultrasound was in September
This year has been the tough time:
1/16 blood work (slightly low WBC)
1/18 consult with a urologist because I had a routine ultrasound for fibroids and I complained about a hardness above the waist; they found cysts in my kidneys so they were worried about AMLs (angiomyolipomas) which can in rare cases present a risk for tuberous sclerosis (Tuberous sclerosis or tuberous sclerosis complex (TSC) is a rare multi-system genetic disease that causes non-malignant tumors to grow in the brain and on other vital organs such as the kidneys, heart, eyes, lungs, and skin). Somewhere in that month they sent me to the U of WA Center for Genetic Disorders, Dr Sybert, who examined me naked along with 2 other women in a black light for skin abnormalities. Great fun it wasn't but not scary since I seemed at so little risk.
1/31 CT scan
3/19 2nd abdominal CT scan which again showed enlarged lymph nodes so they did a needle biopsy and I had nausea from the fentanyl so it was a very long day.
PET scan is scheduled for end of April. This will determine if I have stage 3 (above the diaphragm as well as below the diaphragm). Stage 4, bone marrow involvement, will not be determined now.
Ultrasound was in September
This year has been the tough time:
1/16 blood work (slightly low WBC)
1/18 consult with a urologist because I had a routine ultrasound for fibroids and I complained about a hardness above the waist; they found cysts in my kidneys so they were worried about AMLs (angiomyolipomas) which can in rare cases present a risk for tuberous sclerosis (Tuberous sclerosis or tuberous sclerosis complex (TSC) is a rare multi-system genetic disease that causes non-malignant tumors to grow in the brain and on other vital organs such as the kidneys, heart, eyes, lungs, and skin). Somewhere in that month they sent me to the U of WA Center for Genetic Disorders, Dr Sybert, who examined me naked along with 2 other women in a black light for skin abnormalities. Great fun it wasn't but not scary since I seemed at so little risk.
1/31 CT scan
3/19 2nd abdominal CT scan which again showed enlarged lymph nodes so they did a needle biopsy and I had nausea from the fentanyl so it was a very long day.
PET scan is scheduled for end of April. This will determine if I have stage 3 (above the diaphragm as well as below the diaphragm). Stage 4, bone marrow involvement, will not be determined now.
Diagnosis
Non-Hodgkin's Lymphoma
Staging: B-cell neoplasms: follicular lymphoma, Type: nodular lymphoma, Nodal or lymphatic site, paraaortic adenopathy 2.5 cm
(1 in.), mesenteric adenopathy, Extranodal or extralymphatic site: none, Symptoms: none, Transformation: no.
A diagnosis. What a difference a diagnosis (day--Dinah Washington song, "24 little hours") makes! One day you are healthy with an ominous feeling in the back of your mind and the next day you are sick, or in my case, potentially sick.
But what if I didn't know? Would it be better? easier? Yes, now I can be proactive which conventional medicine tells us doesn't help but maybe doesn't hurt.
So it's amazing how different my friends and family react. "So what does that mean?" asked a coworker. Now that's honest and to the point. The friend who wrote a short poem about rainbows and tears streaming down her face was a bit too much. I don't need histrionics but yes, she means well and probably doesn't know much about NHL before she reacted. I'm not going to die in 4 months like my mother (pancreatic cancer), I feel like saying, but don't. Or at least I don't think I am...
So now I have this label and what do I do with it? Feel sorry for myself? blame every ache and pain on it? Join this and that virtual community to get "support"?
From Illness as Metaphor by Susan Sontag: Cancer has now become the predominant disease metaphor in our culture. Cancer is considered a disease of repression, or inhibited passion. The cancer sufferer characteristically suppresses emotion, which after many years emerges from the unconscious self as malignant growth.
And then there are the close friends who admire me. For real? What is the alternative, weeping and moaning? Poor me! Yes, I do feel some of that but maybe it all seems too unreal right now for any weeping violins. Or at least not until I'm sick, IF I ever get sick. It's not inevitable with NHL! Oh, more acronyms, glorious!
Though there is something about the attention that part of me likes, as cavalier as I can be about the diagnosis. What's that about? I guess it's obvious enough, we all need attention, even if it's suspect.
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