Remission, 2020

 "NED stands for 'no evidence of disease.' People in my online support group said 'Dancing with NED' when a scan showed that the lymphoma was all gone." (https://lymphomanewstoday.com/2019/04/12/slow-growing-cancer/#:~:text=NED%20stands%20for%20%E2%80%9Cno%20evidence,the%20lymphoma%20was%20all%20gone.)

So I guess I am dancing with NED. In times of Covid19,  some dancing is better than no dancing!

I asked my oncologist, a young pretty Indian-American woman, if I have increased vulnerability to contracting Covid19 (who I saw on September 22nd).  I am not sure but I think she said a little. She didn't make me worry. But she does recommend I get another CT scan next year. It will have been 4 or 5 years since the last one. There are no problems, no enlarged lymph nodes, but an occasional scan is reasonable.  I am to report an increase in night sweats, lumps, etc.

I feel bad that I don't remember the specifics! 

Three years after diagnosis and treatment

Hooray, I got a CT scan this month, July 2016, 3 years later, and I am "still in remission". Dr Oliver Press is my new doctor (Seattle Cancer Care Alliance) and he wants me to get a check up every year but another CT scan can wait two years.
Meanwhile, a woman I know, a friend/acquaintance, chose Death with Dignity. I am glad we have that option in Washington state although I understand it's not that easy to get, especially in cases of dementia, etc.
Do your paperwork, is the lesson. Five Wishes, POLST, advanced directives. Yeah, it's unpleasant, but so important.

Getting another CT scan and drinking lovely berry barium swill. Had a Valium which turned out to be unnecessary.

Maintenance Rituxan vs as needed treatment

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. 

I found a prognosticator online and this is what it said, if I put in the correct information.

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%.

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.

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

A 74 year old man with lymphoma

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.

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.

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.

That doesn't sound like fun, does it?