Not Tcell Leukemia but CLL

[Mom-mom-e]

I posted a month ago after I received a diagnosis of Tcell. My Mom died of compilations of CLL in 1994, so when my lymphocyte count began to slowly climb, I began to be followed. Three years ago when ALC was 13,000 I had negative Flow Cytometry, negative Tcell receptor beta rearrangement. I was asymptomatic, no palpable nodes. ALC continued to climb slowly but this year went up to 37,000. Tcell receptor beta rearrangement was positive. Flow cytometry was repeated in light of Tcell and now positive for Bcell! So I have CLL, p53( p17 deletion), IgHV unmutated. ( not the best, but much better than Tcell) . I am still asymptomatic, no palpable nodes. I have some fatigue,but I think more related to being 67. Only WBC abnormalities, no other cytopenias. So I am following this site, it has given me much current information and I love how supportive the members are to other members. Definitely not the club I wanted to join, but happy that it is here. Following up in November with CT . Blessings to all.

[lankisterguy Volunteer]

Hi Mom-mom-e,

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Welcome again, and as you said, 17p p53 UnMutated is not the best but far more treatable than many of the T-cell Lymphomas. So that is good news.

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The scheduled CT Scan without symptoms suggests that your doctor is not a CLL expert. You may want to use this time before November to get a free 2nd opinion from a CLL expert by following these instructions: cllsociety.org/cll-society-...

and this can be done without leaving your home.

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Len

[Mom-mom-e]

Actually, what he said, was maybe CT, depending on November findings.😬 As a patient, you tend to read into things to fit your own expectations.

[lankisterguy Volunteer in reply to Mom-mom-e]

Getting a CLL Expert opinion is still recommended. Just the tele visit will provide lots of knowledge for you. Well worth it!

Len

[Mom-mom-e in reply to lankisterguy]

I have connections to Hopkins, they have an expert there, will follow your advice!

[cajunjeff in reply to Mom-mom-e]

Establishing a relationship with a doctor at a major center like Hopkins who specializes in Cll is the very best thing you can do.

We are in the midst of a treatment revolution with Cll and the discovery of novel drugs that target Cll cells and better spare healthy cells. There are dozens of ongoing clinical trials testing these drugs in a variety of combinations and sequences. Having a doctor up to date with treatment options is so ver6 important.

The Cll treatment landscape changes rapidly such that the treatment you might take for 17p Cll today will not be the one someone takes next year. Cll is a heterogenous disease so we are seeing a lot more individualized treatment plans based on different genetic mutations with Cll.

So you are in a good place to gather information. A lot of data on Cll and 17p Cll is outdated. There are a lot more treatment options for 17p Cll now, and some very effective options. Welcome to the site.

[Mom-mom-e in reply to cajunjeff]

My current MD is seems very up to date, with new clinical trials, not at all in a hurry to treat.

But if I live close to Baltimore, it definitely worth a 2nd opinion at Hopkins. I retired to Delaware, but my physicians remain in Maryland, hard to beat the health care there.

[cajunjeff in reply to Mom-mom-e]

Yes I don’t mean to say you don’t have a great doctor already. You might. My first Cll doctor was a highly recommended young oncologist who very much impressed me. I had no idea there were even Cll specialists at the time.

He wanted to treat me right away with chemo. I told him I wanted to go get second opinion from md Anderson and he discouraged me from going there and said I should see his Cll specialist friend in New Orleans. His friend was a hematologist who said I should not treat now, and that when I do treat he suggested a different type of chemo. He was an impressive guy too.

So I went to see a specialist at MD Anderson to break the tie. He said I didn’t need to treat then and he eventually put me on ibrutinib, no chemo. While I think the doctor I saw in New Orleans knew more about Cll than my first doctor, in retrospect I don’t think he was a true Cll specialist in that he treated a variety of hematologic disorders.

You might already be in the hands of a Cll specialist, that’s great. And he might be super up to date. I thought the same of my first doctor because he seemed bright, I believe was genuinely interested in helping me with the best advice, and told he treated multiple Cll patients. I am glad I sought a second and third opinion. And I am glad I ended up in major cancer facility as opposed to my local oncology office.

That’s not to say there are not local oncology practices that do a wonderful job and that there are not general oncologists who do a great job with Cll. I do think in general people get the best treatment with doctors who treat Cll exclusively. Just my opinion, could be wrong.

[Mom-mom-e in reply to cajunjeff]

Agreed,. Any physician worth his/ her weight usually encourages a second opinion., if they are confident of their plan of care.

[cllady01 Former Volunteer in reply to Mom-mom-e]

So true, and the thing that makes the CLL Society's offer (for U.S. patients) a free online appointment for second opinion by a widely known and experienced Dr. , is that the "true" specialist Jeff has described, is not available everywhere, nor are all patients able to travel the miles some do to see such a Dr.

I define a specialist in CLL as one who has seen a lot of patients and has the knowledge and wherewithal to do the differentiation of blood cancers to find the diagnosis. I am biased I suppose because my CLL specialist is the director of research in a blood cancer facility--his research is in all blood cancers, and he has seen and does see many CLL patients, has ongoing trials.

I respect the hemocology/oncologists who know they don't know and are open to second opinions from more knowledgeable Drs. It is true, though, egos and economics do make some not so ready to refer/defer to those with more experience.

[devonrr]

Fatigue is a funny thing as we are often tired and not fatigued, especially as our Hgb numbers drop. Fatigue is more than tiredness, I personally think.

I get tired and so rest for a while and continue with activity. As you say it could be age or CLL.

But fatigue I’ve had twice and it over takes you so that you cannot stand from sitting. You feel awful and often sleep for many hours to recover. What brings it on? Who knows! A virus passing through, really over doing it?

I plan activities so that I sit and rest or spread the task over 2 days. Your body will tell you when it’s tired. I make mistakes when tired!

Just come back from volunteering in the community orchard and yes, after an hour of harvesting I sat down for 10 minutes before the next job.

I always keep a record of my hgb results not just lymphocytes.

Enjoy life and best wishes.

[Mom-mom-e]

Thanks, for your insights. I agree about fatigue. I think the same is with night sweats, being hot and “ sweaty” is not a drenching night sweat, my Mom suffered those.