Recurrence statistics

Is it more likely after "double hit" lymphoma (DBLCL) to get follicular lymphoma or a repeat of DBLCL?

After successful treatment for Diffuse Large B-Cell Lymphoma (DLBCL), it is significantly more likely to have a relapse of the same DLBCL rather than develop follicular lymphoma. While DLBCL can arise from follicular lymphoma (transformation), the reverse is not typical, and relapse usually presents as the same aggressive histology. 

PubMed Central (PMC) (.gov)

Key Findings on DLBCL Recurrence:

Relapse Probability: Approximately 30% to 40% of patients with DLBCL will experience a relapse, generally within the first two years of finishing treatment.

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PET scan

 Yet another PET scan! I was hoping to go for two years in between but Dr Ujjani wanted to make sure the shortness of breath I have been experiencing is not due to lymphoma. 

The patient summary says: 

History of follicular lymphoma diagnosed in 2013, treated with rituximab with good response. In 2021, developed high-grade transformation (double-hit lymphoma) with bulky retroperitoneal and nodal disease, treated with R-CHOP followed by dose-adjusted R-EPOCH, achieving complete response.

Now I have to wait for the result on MyChart or the TeleHealth appointment. I'm not worried because I think it's due to weight gain...or a heart problem, more worrisome.  

There is a cardiologist visit in my future!

Insurance game

My MediGap (supplemental) plan, Regence, is increasing this year by 22%. Medicare is also increasing but not by as much. Thanks, MAGA lunatics!

It makes me think about quitting it. But if I get sick with lymphoma again, how much would it cost me, beyond the 80% Medicare would pay? 

I had no idea so I tried to look it up. So 20% of the probable maximum of $141,000 would be $28,000. I would save almost $3,000 by not paying for Regence. Health insurance in this country is such a guessing game! I guess I better stick with Regence. 

Studies on Dose-Adjusted R-EPOCH (DA-EPOCH) show costs often exceed $100,000 for the full treatment, which includes medications (rituximab, etoposide, prednisone, vincristine, cyclophosphamide, doxorubicin) and administration.

It would be more for in-hospital treatment,  perhaps $141,000. 

New scan

 My oncologist is very optimistic about my latest scan and was talking about changing the schedule so I would only get a scan every 2 years but there is a little spot on my liver which could be a cyst but we don't know.

So she wants to do an MRI soon and we scheduling it in 6 months and then I would have an in-person visit in January 2025.

 She can't say that I am in remission and she can't even say NED (no evidence of disease) but...it is important that I am feeling good and so there's no evidence of a need for treatment. She doesn't think the bright spot on my liver is lymphoma but it IS a little more conspicuous now than it was in previous scans; it's an "ill defined" spot.

NYT:, 2/13/24

the era of frequent imaging has given rise to the vexed problem of “scanxiety”. Patients live from scan to scan and it takes a superhuman effort to suspend worry.

https://www.theguardian.com/commentisfree/2024/feb/14/im-an-oncologist-this-is-what-king-charles-and-my-cancer-patients-have-in-common?CMP=Share_AndroidApp_Other

PFAs

With new research coming out about PFAs, I wonder if I could have gotten  lymphoma from drinking water.   A stronger connection is from military bases but I was certainly never on a military base. 

Then I have to wonder about my mother, too, and how she got pancreatic cancer. But how are we to ever know!

https://www.buzzfeednews.com/article/stephaniemlee/pfas-cancer-study

My yearly PET scan is coming up soon in January!

Good scan but I wish I was in NED

Dr Ujjani says "no need for treatment" (NNT?) rather than NED (No Evidence of Disease) and the word remission cannot be used. 

My next check up is in 6 months (in person!) and she said we can wait a year for next PET scan! Unless symptoms arise, of course. 

The few areas she was concerned with in my last scan (in June 2022) have gotten smaller but they are still there, still could be lymphoma but she can't tell; they are deep in the belly, under 2 cm and can't be biopsied.

https://www.healthline.com/health/cancer/ned-cancer

Another scan

I had another PET scan this past Monday, 6/13/22. I talked to the doctor today. 

All looks well. White blood cell count still a little low but throat brightness in last scan has diminished; the slightly large nodes of concern last time are smaller!

I can get the Covid vaccines again in July and my next PET scan can wait for 6 months instead of three. The doctor is having a baby so it will actually be January until my next PET scan.

She thinks I had a mild case of Covid19 not because of the Paxlovid but because of the Evusheld.

Covid positive

It finally happened! I have Covid19.  I am feeling quite well, probably thanks to being able to get Paxlovid, the antiviral medicine meant for the immuno-compromised and those over 65. I am pretty sure I got it from looking at a few houses with a Port Townsend realtor. 

It feels like a cold so nothing to be too concerned about. 

It is almost a disappointment after fearing and dreading catching it for so long!

Does this mean I have Covid antibodies that will remain for a while with no effects from chemo?

I guess I still have to be careful...

Throat okay

 It wasn't a fun appointment (is there such a thing for medical appointments?) because the nose scope was very uncomfortable, even after an anesthetic, like a very long Covid PCR test. Then he examined my throat and made me gag. 

But he concluded that there was nothing suspicious (like throat cancer)! Hooray! He said I "had bigger fish to fry." 

I hope not. At least not right now. 

Evusheld problems

Looks like Evusheld antibodies just aren't as good or comprehensive as the ones your body forms after the vaccine:

https://www.verywellhealth.com/astrazeneca-monoclonal-evushield-vs-vaccines-5214237

"an infusion of synthetic antibodies quickly disappears within days or weeks without teaching your immune system this lesson."

https://medshadow.org/evusheld-antibodies-to-prevent-covid/#

And the problem since the beginning, lack of supply, could get even worse!

https://www.news-medical.net/news/20220317/It-was-already-hard-to-find-Evusheld-a-covid-prevention-therapy-Now-ite28099s-even-harder.aspx