Newbie here, not sure if I belong

[LaurelD]

Hi everyone , I have clpd-nk, am I in the right community? If I am I have questions for all of you. I have had numerous blood draws starting with the discovery last December after my yearly physical. That sent me for the flow test which was sent to Mayo which gave this diagnosis. Then I went to the hematologist in may for lots of blood tests including another flow test which confirmed the original diagnosis. For reference I live in the USA, a suburb of Chicago. I have lost a fairly significant amount of weight and have fatigue and shortness of breath. Here’s my question for you, my hematologist wants me to have a bone marrow biopsy and aspiration done and I really don’t want to do that. Says she can’t give me an accurate diagnosis without it even though we have the flow test results. I am inclined not to have any treatments done as I’ve seen far to much cancer run thru my family and the terrible time they all had with not good results. What do you all think? Sorry if I’m in the wrong spot but my primary doctor back in January just said I had cll and that I should be very happy that this was the cancer I had gotten. Thanks everyone

[lankisterguy Volunteer]

Hi LaurelD,

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I must admit that although I was diagnosed with CLL 14 years ago and have been involved with this website for 9 years, I have learned lots about CLL (Chronic Lymphocytic Leukemia / Small Lymphocytic Lymphoma) and the much broader category of NHLs (Non Hodgkins Lymphoma). But until today, I have not been aware of your diagnosis- clpd-nk.

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ncbi.nlm.nih.gov/pmc/articl....

sciencedirect.com/topics/me...

The referenced articles class your cancer as a Leukemia, and since you are in the USA, you may find more help and support from the LLS.org lls.org/support-resources

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CLL is the most common of the NHLs, but still is a rare disease in the USA and the world (about 20,000 newly diagnosed patients each year in the USA - for comparison please see gis.cdc.gov/Cancer/USCS/#/A... ) and although it has Leukemia in its name, it has much more in common with Lymphomas and very few connections to Leukemias.

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So sadly I suggest that you may not find much information that is useful here, and the LLS.org may be a much better resource.

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Len

[AussieNeil Partner Administrator]

Hi Laurel,

One concern you have in common with many members in this community is undergoing a bone marrow biopsy. Having this done where the practitioner does them regularly can really make a difference. That would certainly be the case at Mayo, plus Mayo Clinic does have the expertise to determine what specific blood cancer you have. (I've had a couple of BMBs, but some here have had many more.) It's very important in cases where there is uncertainty of your diagnosis to get that resolved and a BMB at a center of excellence really is the best way to do that. You'll then be able to get the most accurate information on potential treatment outcomes to decide how/whether to proceed. Sorry, but this is my tenth year as an administrator of this CLL Support community and I don't recall mention of your tentative diagnosis either. If you do end up with a diagnosis of CLL, you've found a good place for support for what is an eminently treatable blood cancer. I hope that whatever you have is likewise.

I hope this helps.

Neil

[Skimom]

LaurelD,Welcome to our group! We are a very welcoming family from aroundtheworld. Everyone here has some variety of CLL. No questions are bad. Settle in. We can support you and hopefully help uplift you. Good luck with your testing. Diana

[mamabailey626]

Hi LaurelD, welcome to our community. I too am from the suburbs of Chicago and I firmly recommend you see a specialist for leukemia. My daughter is a special education teacher and was having her kids fundraise for LLS (she knew that eventually I would need a specialist for my CLL.) LLS suggested these 2 University hospitals and I’m urging you to call our local LLS or call either hospital. You can’t go wrong at a teaching hospital. Depending where you live in the suburbs, the two best hospital’s for leukemia are 1- University of Chicago and 2- Northwestern University. I live in the southwest suburbs and I am thoroughly impressed with the University of Chicago and absolutely love, love my doctor and her team.

I wish you all the best and stay strong my leukemia warrior friend. 🧡~Mary

[SofiaDeo]

Your disease isn't the same as ours, involving a different cell line (NK cells) while ours involves B-lymphocytes. So while we can't comment much, or give advice, on more detail-y aspects of your diagnosis, we *can* comment on bone marrow biopsies and dealing with problems related to a chronic blood disorder.

Get the bone marrow biopsy. Your doc really needs good data to see what's going on, and offer the best treatments. And re:previous family members and their trials with cancer treatments, within the past decade there has been an explosion in blood cancer medication options. 2 decades ago, for most all cancers, standard chemotherapy was most often used. As you are aware, these agents affect numerous cells other than the cancer ones; they are relatively non-specific. Nowadays, the new treatments target specific cancer pathways, and while I won't tell you there is zero potential for side effects, they generally are significantly decreased. Some people have very few, compared to "older" treatments where virtually everyone had nausea, vomiting, and other side effects. If you spend some time on reputable medical websites like LLS.org, or look at papers/publications from some of the ".gov" or ".org" websites, you are likely to get more accurate information.