CR and Mantle Cell Lymphoma?

[timc]

In Sept 2021, I was diagnosed with mantle cell lymphoma (MCL - confirmed by the FISH test method). The prognosis is generally and statistically grim but possibly twice as good as commonly reported:

https://en.wikipedia.org/wiki/Mantle_cell_lymphoma#Prognosis

https://www.medicinenet.com/mantle_cell_lymphoma_mcl/article.htm#what_is_the_prognosis_and_survival_rate_of_mantle_cell_lymphoma
[At 50 and otherwise good health, I'm in the 'under 65' category - generaly ok for most procedures.]

For the record, the doctors are optimistic or at least not pessimistic. It's the web that's scary.

Rushing tests as fast as possible (blood, x-ray, biopsy, PET scan, bone marrow biopsy, CAT scan), I was able to start chemotherapy in October (I had little interest in treatment delays or 'watchful waiting' - thankfully the oncology team moved quickly). The PET scan put me in Stage 3 or 4 (due to tumorous lymph nodes in all quadrants of the body and neck). It was detected in my bone marrow which might imply Stage 4 (?). However, that is not - as told to me - unsurprising. Also, the literature does report staging to not always be critical.

Staging matters less because the crux of the biscuit is "relapsed or refractory (R/R) disease" when the MCL comes back:

https://lymphomahub.com/medical-information/treatment-landscape-for-mantle-cell-lymphoma-an-update

So far, I do NOT have the TP53 mutation and my Ki67 is 10-20% (both of those are good news). Presently, I'm in the second 28-day cycle (of 6 cycles) in 'Arm B' of this study:

https://www.clinicaltrials.gov/ct2/show/NCT04115631?term=ea4181&draw=2&rank=1

***

This has more than rekindled my interest in CR. I've been tracking calories and weight for about 90 days with mostly good success. The first round of chemo did knock out some short-term healthy eating habits which I have started to reclaim (and improve my calorie tracking as that got too lax).

While I haven't yet found much to suggest that CR is curative, it has the potential to

- improve odds of successful treatment (if 20% better odds ... I'll take that)
- avoid secondary cancers
- help appetite and avoid/prevent nausea

My 2nd cycle, I've used zero anti-nausea meds, haven't been sick and appetite is nearly normal - too good actually. Generally, exercise and restricted eating makes me feel better.

Before my diagnosis, I was ~190 lbs (BMI 28.1 at 5'9"). Briefly, I dipped to 169 lbs (BMI 25) when 6 lbs and my swollen lymph nodes disappeared over two days (there is also a yo-yo weight effect from intravenous steroids given prior to chemo as that causes temporary fluid retention). Right now, I'm at 177 lbs and prefer to be under BMI 25 and then move slowly towards BMI ~22.5.

Due to some back pain and too much inactivity (no soccer, exercise), I began strength training about 5 weeks ago. Nothing exhaustive and mostly anaerobic, but it does add a variable to tracking weight and calories.

***

How did it all come about? My barber noticed a cyst on my neck - must have been a swollen lymph node. Seeking the home remedy route, I put some castor oil on it. After two nights of that, I came down with Bell's Palsy which brought me to the ER with stroke concerns. After about 10 minutes with an ER doc, they let me leave with prescriptions and instructions to followup with a primary.

I was free of the Bell's Palsy within 4-5 days which is fast. Nonetheless, I got a new primary and went to a regular doctor for the first time in 6 years. This doctor noticed the swollen lymph nodes all over my body. These were painless though I should have noticed the ones proximate to my armpits (axilla?). I have been free of most 'B symptoms' (no fever, night sweats, unexplained weight loss). 'Fatigue' is too ambiguous for me to know conclusively.

[Dean Pomerleau]

Tim, 

Sorry to hear about your MCL diagnosis. Thanks for sharing your situation with us. It sounds like you being quite proactive and are doing all you can in terms of understanding the disease and possible treatments. You are fortunate to be part of that promising clinical trials. Best wishes for a full recovery!

--Dean 

[Saul]

Good luck Tim,

We're all rooting for you.

  -- Saul

[Sibiriak]

Tim,  your calm fighting spirit is really admirable.  I have a strong feeling you're going to beat this.

Regarding CR and cancer,  there was some recent discussion on that topic here:    What would you do if you get cancer?

[timc]

Hi All,

Thanks for the kind thoughts. In the other thread, Sibiriak set it best about looking for an adjunct to other therapies. The dietary focus given is what foods to avoid (raw/undercooked meats, fish or eggs, soft cheeses, a few foods like grapefruit that can interfere with my specific meds) and some tips to maintain weight (if appetite is an issue).

[Ron Put]

Wish you the best in the new year, Tim.