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CLL Support Association
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Feeling confused about starting treatment 😱

I have a really good cll specialist who thinks I should start treatment after he gets my BMB results and I have read on certain websites like NHS that I am getting symptoms but when I put a post on here yesterday it seemed there was no reason to start treatment , I am in no rush for treatment and didn’t ask for it but I do listen to my consultant . Can anyone tell me the symptoms they had when they started there first treatment ?

Thank you for reading this

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While it will interesting to hear of other's symptoms before they needed to start treatment, another excellent resource for you is this pinned post: healthunlocked.com/cllsuppo...

This post references the collective wisdom of CLL specialists around the world in published guidelines on when to treat. Your specialist should be able to relate his/her recommendation on why you should start treatment to the considerations covered in these guidelines. Keep in mind that CLL specialists get a good feel for how patients are likely to progress from the patterns they have observed in past cases, (It's part art, part science and with CLL expression so heterogeneous, a non CLL specific specialist is less likely to have built up that background). It may be that your specialist isn't able to exactly point to a specific treatment guideline, but their recommendation should broadly still relate to what's published. If you are not satisfied with your specialist's reasoning, then by all means seek a second opinion from an independent specialist, which your specialist should readily support you doing.

In your case, the feedback from yesterday's question was questioning whether your specialist had sufficiently eliminated other causes for your symptoms - given that addressing these would be preferable to starting treatment earlier than absolutely necessary. Importantly, your bone marrow biopsy results will enable your specialist to best determine to what extent your CLL is likely causing your symptoms, rather than other possible causes. The reasoning behind the Watch and Wait protocol with CLL is that it is best to delay treatment associated risks as long as practical, given all CLL treatments do come with side effects and can further lower our immunity.

Neil

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Thank you Neil, I will look at the link now

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Hi Crystal. CLL can present in wildly different ways in everyone because the disease is so variable. If people all posted their primary symptoms, you would think it is multiple diseases being discussed, not one. In my own case, I had developed extreme cytopenias (anemia and neutropenia) because I had almost no functional bone marrow left. And I had also become transfusion dependent. That's what required me to start treatment. But I never had elevated lymphocytes, and not much in the way of enlarged lymph nodes. For other people, extreme fatigue may be the thing that starts treatment. Or a dangerously enlarged spleen. Or other possibilities, as I believe Neil has posted with his link.

Then there is the matter of do you do what your doctor says without question (because many doctors will pull the trigger on treatment prematurely because they are not all that familiar with CLL)? Or do you merely take the doctor's advice into consideration while doing your own research (which will likely have to be quite extensive) and then make your own decision? I ALWAYS do the latter - make my own decisions, which may or may not coincide with what a doctor advises. But many people prefer to do the former - let a doctor decide.

Good luck to you!

kim

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Also, Crystal, just as a follow-up to my previous comment to you... Bone marrow biopsy is not required to start treatment. And I don't believe one should be performed if the only reason is to find out if you are 80% infiltrated or 95% infiltrated. Because it is an invasive procedure, and treatment will be the same regardless of your % infiltration. However, there may be some other reason for doing one,. In my case there was, so I approved it. So be sure you make your doctor explain to your satisfaction why a BMB is necessary at this time. Don't just accept the answer "so we can start you on treatment" - because that is not an answer. And make sure your doctor explains to your satisfaction exactly what the reason is for starting you on treatment at this time.

Best to you,

kim

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Are your platelets and/or hemaglobin low? That likely means your bone marrow is not functioning well. Platelets under 100? This is like a toothache that wont go away. When I started to get more fatigued I said why am I not beating this back and get my body more healthy at least for a while? Treatment is to help you.

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Hi, Crystal, my hubby was on w and w for 18yrs bloods were stable but he developed swollen ears as his ears remained swollen for some months his consultant decided to do a biopsy which came back as CLL.Hubby then had bm the results were 95% infiltrated he then started chemo that was 18 months ago and he is doing very well.

regards Jenny

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Hi Crystal. I am in a very similar position to you. Being considered to start treatment but symptoms, as far as I am aware) are only fatigue, anaemia, WBC 195. I have to admit that I am wondering if I could wait before taking the big, scary step into treatment. I have had the BMB and CT scan done which I was happy to have (knowledge is power) and will wait for my next appointment (28th Feb) to see what is recommended. This time I will have my questions ready.

Good luck

Netty

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I would like to suggest that you make a list of questions for your CLL specialist or hematologist so you are prepared for visit. It seems every time I get back from doctor visit, I have additional questions after doing research. May you be blessed.

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