Anyone have chronic lymphocytic leukemia (CLL)?

You should be communicating with your oncologist about your night sweats, check out https://bloodcancerunited.org (the former CLL org) look under CLL they have a great PDF you can download which explains signs, drugs used to treat CLL. Also is your doctor also a hemologist ?CLL is a blood related cancer.@1retiredcboperator

@gliderguy Call the Hematology Department directly. If Scottsdale is at all like Rochester, they will get you into a CLL expert.

@gliderguy when I was first diagnosed I tried to get into see an Onco at Banner in Phoenix and they told me 6 MONTHS!!! I looked up my drs online w Blue Cross and found a great onco at Ironwood Cancer Center, 1 week…..don’t take that crap!!!!

@ppolockaz that's where I go - Ironwood. My wife happens to volunteer there - so we were able to get in quickly. I don't think my nerves would have lasted 6 months.

My Onco there ordered every test to determine where my CLL was at and I am satisfied w them. They respond when I leave messages within 24 hrs and usually the same day

Hello
My spouse was recently diagnosed with MDS. When I looked at his after office visit summary, it said MDS/CLLM. So now I am researching CLL I saw on the CLl society website that 3 tests are given --FISH, TP53 and IgVH. Should my husband ask to have these tests done?
The doctor is taking a wait and see approach. My husband is 80.

Hi @barbeeh51 I just wanted to make sure that you say my reply from several days ago. You’d mentioned your
…”husband of 80 was just diagnosed with MDA. He would not know that he had it if it were not for the low WBC and RBC numbers and low iron”. And that the doctors at this time are in a wait and see approach. Here was my reply. I think you’ll find it helpful:
https://connect.mayoclinic.org/comment/1592202/
Much can be learned from just the current labs your husband had run. He can certainly request the more detailed informative tests and even add a bone marrow biopsy. But his doctor, at this time, may not feel they are necessary. As Colleen mentioned there are different subtypes of MDS and CLL. Because some of these blood conditions may take years to progress, often there is just an active surveillance approach. (Wait and see). Treating preemptively, hasn’t been shown to be any more effective than waiting until necessary for some conditions. And treatments may come with their own set of side effects so doctors tend to wait until the risk vs reward balances.

Does that make sense?

@loribmt I'm not debating that his diagnosis is questionable, I'm sharing that the CLL was not mentioned at the office visit and no further action was suggested at that visit. I'm questioning now whether he should request going for further testing as I implied.

Hi @barbeeh51 Guess we got our wires crossed. 😉 I didn't, at all, sense that you were debating your husband's diagnosis was questionable. But what I hadn't caught was that your husband's doctor didn't mention the CLL along with the discussion of MDS (myelodyplastic syndromes). So I'm sure that came as a surprise to you both to see CLL on his medical information. I agree, the CLL probably should have at least been mentioned in the conversation with the doctor.

Though the CLL may not warrant further testing at this time. CLL tends to be a very slowly developing type of leukemia which often doesn't require treatment for years if caught in the early stage. You mentioned your husband is 80 and many people newly diagnosed with CLL can go 10 years or so without treatment. So the doctor may not have discussed it as a primary concern because the MDS is a higher priority. I guess what I'm trying to say is that the tests you're referring to would further confirm the CLL diagnosis along with the MDS. But because the doctor is already aware of this, it most likely wouldn't change the 'wait and see' surveillance mode. Your husband's followup blood work would keep the doctor apprised of both conditions.

I know this is a concern to you and your husband and understandable you'd like clarification. You can certainly call his oncologist's office to speak with the doctor or NP/PA to have your questions answered. I think that would go a long way for your peace of mind. Does your husband have any upcoming appointments where you both can discuss this with his doctor?

@loribmt Thanks so much for your kind reply and information on the CLL progression. I am being timid on asking to speak to the doctor. The next appointment is about 6 weeks away, with blood testing every month.
You have been helpful.
Barbara