Fatigue and SLL

[TLSAtlanta]

I posted this a question not too long ago and there were helpful responses but I can't find them. Brain fog I guess. I have SLL recently diagnosed, enlarged lymph nodes x1 year that went from neck to armpits to groin. generally 1 to 2.5 cm so not alarming in size. they aren't painful or really tender but I feel pressure and pulling that isn't comfortable. My labs are pretty normal, WBC 13.2; RBC 4.5; ALC 6.7 (more than 1/2 are B cells). Flow meets CLL criteria and FISH shows 2 abnormalities in 40+% of sample (Trisomy 12 and 13Q); not yet tested for mutation status. I have a lot of fatigue. Nearly every day now, varies in how much of the day it affects, and its progressive over the last year (ie from few times a month, to weekly, to multiple days in week to now almost every day). Nothing else is going on - no other health issues, not depressed or anxious or stressed. Doctors are reluctant to ascribe this to the SLL because bloods are not whacked. Since I am a 61 year old woman they imply its menopause or depression etc. Doesn't seem to me menopause fatigue would be progressive. It also doesn't seem very 'Occam's razor' to conclude that the persistent and progressive lymphadenopathy is consistent with the FLOW and FISH confirmed SLL Dx but the fatigue is due to something else. So has anyone else had this experience with progressive fatigue despite good blood levels? Thanks

[bennevisplace]

I think this must be the previous post you mean healthunlocked.com/cllsuppo...

[bennevisplace]

Another post you may be interested to read, concerning the presentation of SLL/CLL in the lymph nodes and how to quantify it: healthunlocked.com/cllsuppo...

[SofiaDeo]

I had severe fatigue with a regular blood CLL presentation and other than lymphocytes, labs started normal. I've had to tweak my Vit D and thyroid, but even with those optimal the fatigue was lessened but not eliminated. I wonder if you have a higher than normal amount of the documented "doctors ignore women's symptoms."

webmd.com/women/features/wo...

I personally do 2 things to combat this. #1, I "power dress" in my most expensive, CEO type clothing when I go to the docs. Not necessarily a skirted suit, but, blazer and dress pants. I now wear stretchy ones so they can easily feel my groin nodes without changing clothes, and on top I wear a short sleeve something, usually a knitted silk sweater with no underwire bra, just stretchy ones. So I don't have to put on a gown to be examined, and blood draws are easy, I just take off the jacket. There are a number of older but valid studies showing how women (as well as men) present themselves affects perception. Body language is also important, probably more important than the clothing. I am "at work" at the doctors office; I am a partner working together with my doc regarding the problem of my disease & treatment, it's not a "someone with authority/in charge is telling me me what to do" type interaction.

businessinsider.com/women-a...

psychologytoday.com/us/blog...

#2, I switch docs when I got one that was "patronizing" like this. Cancer related fatigue is real, and it's been documented in CLL. If you are otherwise satisfied with the docs, show them this link, you can find others when you search "CLL fatigue":

cllsociety.org/cll-sll-pati...

Don't let anyone dismiss your concerns if other causes like thyroid or anemia or whatnot have been ruled out. Are you seeing a CLL specialist? I find it hard to believe one of them would state that your fatigue could not be CLL related. If the workup for other causes of fatigue are ruled out, it likely is related to your SLL. Your nodes are changing, you can feel this, they are uncomfortable, so *something* SLL related is going on, it's active. Why on earth would anyone think that a newly diagnosed, active disease state could not be causing a new symptom?

[TLSAtlanta in reply to SofiaDeo]

Thanks for the lengthy and helpful response. Looking at your bio it seems you had a short TTFT. Was treatment started before bloods got more CLL-like or did you "progress" (such a weird use of the word) quickly? Putting it in best light I think the docs are unintentionally coming off as dismissive because they think if they acknowledge my symptoms are from SLL then I will push them for treatment before its warranted/recommended.

[SofiaDeo in reply to TLSAtlanta]

I have an unusual variant, and I have a medical background. My original hem-onc did a bone marrow biopsy early in, as well as a PET, largely because at first it was thought I had an acute leukemic process. I gave him carte blanche to do anything/everything. I don't always have the classic, small CLL lymphocytes. I have overly large, easier to confuse with Blast cell, ones. I am told by my CLL specialist, that some del17p also having a TP53 mutation variants, can exhibit this. As part of my early workup, I had a bone marrow biopsy. My marrow looked pure white, almost entirely infiltrated. I didn't wait the 3 consecutive months for repeat bloodwork and paid out of pocket for FISH and flow cytometry. So I got a firm diagnosis earlier than others might, since one of the requirements before many US insurances will pay for FISH/flow is 3 consecutive, no earlier than monthly, abnormal blood tests. I immediately began looking to treat; I figured my other cell lines would soon be affected with the rapidity of my CLL infiltration. Plus, exhibiting almost completely infiltrated marrow, qualified me to start. I never had any kind of W&W. I had been having a series of tooth infections, had several CBC/diff done in the preceding 8 months, and nothing went over 10-12K. So this sudden jump to 50K four months after a series of 10K-ish readings was cause for alarm. I also had pretty severe symptoms. I couldn't finish out a work day/be upright on my feet more than a few hours, I started making daily mistakes at work.....pharmacists can't make numerous errors and still keep their license/stay employed. It took me about 4 months to find a study and start it, and by that time my other cell lines were starting to drop. At the time of my diagnosis, the recommendation for my variant was a stem cell transplant. I didn't want to do that, or try some of the first of the monoclonal antibody infusions that were available.

With an SLL presentation, I think the "requirements to treat" can possibly be different than regular CLL. However, since SLL is even rarer than CLL, it likely will take a specialist, or a clinical study, to treat sooner. If you are wanting to consider an earlier treatment, the MAJIC study is recruiting, and unlike many other studies, they are *paying* for already approved drugs. The study is to see how modifying already approved protocols affects outcomes. Unfortunately there aren't any sites in Georgia listed.

clinicaltrials.gov/ct2/show...

If you are thinking of doing something in the near future, there *is* a study with 2 GA sites, including Marietta, comparing oral BTK agents upcoming. I assume you are near Atlanta, so that should be convenient. They aren't yet recruiting, but if you are interested, you can start the talks/see the paperwork. I don't know if this study is paying for the drugs or not, since pirtobrutinib was recently FDA approved for MCL. Clinical researchers are specialists in CLL/SLL, and will do a thorough, intense assessment to see if you qualify for treatment.

clinicaltrials.gov/ct2/show...

I personally looked everywhere in the country when I was first looking at treating, and even though I am in the Rocky Mountains went out to the East Coast. But at that time, I had very few options. If you join a local support group through the CLL Society (I think all meetings are Zoom, everywhere, right now) cllsociety.org/cll-society-... , people there will tell you who they use, what the practice is like, etc. etc.

[AussieNeil Administrator]

With SLL, why would blood counts be associated with fatigue? Members here with the CLL presentation know from what they've shared about their absolute lymphocyte counts and their fatigue, that there isn't any correlation between our lymphocyte counts and fatigue level and why should there be? CLL/SLL cells are dormant in the blood and active in the nodes, where they pour out the cytokine messenger proteins that disrupt our immune system and cause the fatigue symptoms. That's why some of us describe CLL/SLL related fatigue as if we are coming down with the flu. Certainly if we are anaemic (low haemoglobin), that can increase our fatigue, but if other common causes of fatigue are ruled out, then our CLL/SLL is the likely culprit and it's a recognised reason to start treatment if it's too debilitating.

The iwCLL guidelines include the following among the triggers for starting treatment in the section Indications for treatment

Primary treatment decisions

:

7. Disease-related symptoms as defined by any of the following:

:

Significant fatigue (ie, ECOG performance scale 2 or worse; cannot work or unable to perform usual activities).

ashpublications.org/blood/a...

Likewise, it's in the US NCCN Guidelines for CLL;

Guide 4

Reasons to start treatment

You have major symptoms of CLL

• Severe fatigue

nccn.org/patients/guideline...

Personally, I experienced worsening fatigue in the decade prior to my stage 4 diagnosis with an SLL presentation, some of which I consider was due to my body having to work harder to fight off infections, because my SLL severely impacted my immune system. Boosting my vitamin D level into the normal range helped and ironically I found that exercise - going for a walk, would lift my fatigue sufficiently so that I could concentrate better if my fatigue wasn't too overwhelming. Otherwise an afternoon and sometimes a morning sleep helped.

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Neil

[TLSAtlanta]

Thanks very helpful.

[Blue-bird_]

My partner is recovering from CLL and Lymphoma treatment. Have you tried a high dose b12/iron supplement? I wouldn't ignore the idea that your menopause is making your fatigue worse. Try the b12 and magnesium for a week and see how you feel. If there's no improvement, at least you can rule that approach out before going back to the doctor.

My partner's blood counts are below the normal ranges and he still feels an improvement from taking supplements.

[WittyApricot]

hello. Yes, I totally experienced severe debilitating fatigue for several years before I was diagnosed my fatigue was dismissed several times, and my increasing lymph nodes was dismissed several times. I started having enlarged in 2012, but my doctors at the time dismissed it and said they come and they go. Then I started having scans for other issues in pain and there was a trend from 2016 all the way up until I started treatment last August where they were enlarging I had all the symptoms of CLL lingering infections, night sweats, unexplained fevers, but the whole time my blood work looked fine with the exception of increasing white blood cells and lymphocytes, but not way out of control. When I was finally diagnosed in 2021, they recognized, I had SLL and CLL. It is likely that I have the SLL component much longer. My main issue was severe debilitating fatigue. My blood started to look a little bit more like CLL, but the decision to treat was because of my extreme fatigue. There were times I could sleep 36 hours straight because I could not function and was so tired.

I am on venetoclax now and while I have some yucky side effects, bits of energy that I never had. My hope is that the longer I’m on the treatment the more energy I will get.

and just because we’re women, I think doctors tend to dismiss our complaints of fatigue as they are something else. I was dismissed for years because my main complaint was fatigue for about eight years before I started having night sweats and fevers. I had lingering infections, but was told we all heal differently and if I am tired, I should nap. That was ridiculous when you are working. Luckily, I had my own business and could schedule around naps until I couldn’t work any longer,

Please keep advocating for yourself.

[TLSAtlanta in reply to WittyApricot]

Thanks for sharing. Sounds like a frustrating and awful experience. Doctors are taught to figure out each patients baseline when doing assessments but I think they just are not given enough time to actually do that and they default to these black and white markers.

[WittyApricot in reply to TLSAtlanta]

thank you and I totally agree with you.

[LuzyCLL]

I also have extreme fatigue. I can barely take care of myself. I had an adderall Rx, but no one here (since I moved to Washington) will prescribe it! It works pretty well for me, I am able to function and do things. Now all I can do is rest. I have tried more coffee and green tea extract, not working. I think a CLL patient with extreme fatigue deserves some adderall.