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).

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.

Hi Dean, Hi mccoy So you were at (very near) a 50 MB quota. That was increased to 100 MB for all Members. And we can adjust that going forward or do other things when the limit is reached. It isn't a per-user setting but by groups. So Dean (Lifetime), Moderators, Admins, Supporting are each their own group and the individual users of those groups share many settings. *** Additionally, the 'per file' limit *ought* to be 20MB for all groups unless I missed one (they have a Banned group for example). That is what Dean circled above. The quota info might be listed elsewhere.

I have asked the threadstarter for more information and - very importantly - confirmation. Delete is not always an easy button to unpress. I think most people here would be agreeable to the deletion and removal (or changing) of personal information. That said, there is the issue here - and it comes up on other forums - of creating holes in the discussion and/or deleting entire threads (if the deleted account started it). GDPR (EU) and CCPA (California) can create reasonable expectations even if sites like this are not explicitly covered (not in the EU, not in California). Without doing too much technical exploration (test account and posts then testing the delete function or digging into the support forums or contacting support) a simple solution is to replace the user name with a template (UserReqDel20200217), removing any personal info accessible to admins (like email - typically that is it) and changing the password. Then any specific changes or removals can be requested (via email or some other side channel). Users can still edit most of their posts ... down to nothing.

Need a translator?: https://translate.google.com/

Hmmmm ...

Two possibilities: "The Chitchat Room is for open discussion." So that would be fine for all topics. You could also post in the Member's Only forum ("this Community forum is for issues of general interest"). If you need to register and are having difficulty with the confirmation email or otherwise, send me an email timc[a t]crsociety.org. You could drop me a PM here, but you need to be registered for that. WRT more forums, if threads are started so fast that they drop off the first page of the index in a day or so, then maybe more topical division is required, otherwise it could just be bothersome (IMO).

Clicking on the little envelope icon to the left of each post brings up "PM this Member". But this does require that the member has posted a message publicly.

The blogging feature might be the easiest way to start that. It is possible to attach files and insert images. If we had someone who wanted to start posting recipes, it would be trivial to setup.