Treatment

[starlifter]

Just asking a little help , my doctor wants me to start treatment next month my platelets are 84 hgb 10.8 wbc 270.72 , rbc 3.32 symptoms only a slightly swollen which I dont feel, I have had CLL for 4 years watch and wait and feel good , I do a lot of juicing but with Covid around I feel I could wait a little longer any thoughts

[lankisterguy Volunteer]

Hi Starlifter,

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You may want to read this Pinned Post - healthunlocked.com/cllsuppo...

If you are in the USA, you can get a free 2nd opinion from a CLL expert-

cllsociety.org/cll-society-...

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They will request your medical records from your doctor and one of the CLL expert "rock stars" will arrange a video consult with you in your home. That will provide the best possible and credible input to discus with your current doctor.

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Len

[AussieNeil Administrator]

Hi Starlifter and welcome to our community!

I see that you have just joined us, so probably haven't had the time to find the many useful posts that can help you, with the choice ones in our Pinned Post section here: healthunlocked.com/cllsuppo... These two posts are the most appropriate to your current circumstances; deciding the time for treatment and important vaccinations to have beforehand:

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

It's particularly important to get up to date with pneumonia and COVID-19 vaccinations while they are most likely to work, reducing your risk of becoming seriously ill when treatment suppresses your immune system.

I've suggested to plenty of people over the years to seek a second opinion when treatment has been suggested by their specialist and it doesn't fit with the internationally accepted management guidelines (iWCLL). In your case, given your platelets are below 100, and your haemoglobin is approaching the treatment trigger of 10, it's the recent trend and the experience of your specialist that are relevant. It's not how we feel before treatment that should guide our decision, but consideration of what will happen in the first period of starting treatment, when our bone marrow is both struggling to make blood cells due to CLL infiltration while it is being initially suppressed by treatment. It takes a while for treatment to clear out our bone marrow and for it to recover sufficiently to overcome the treatment bone marrow suppression. So we need some buffers in our haemoglobin and platelet counts to avoid the need for transfusions to counter the risk to our organs of low haemoglobin and the risk of bleeds from low platelets.

I had a very similar haemoglobin and red blood cell counts to yours before starting treatment (10.9 and 3.4 respectively) and yet I needed two red blood cell transfusions. My platelets fell to a low of 29. I should have started treatment a month or so earlier, but my treatment commencement was delayed due to factors outside of my control.

By the way, you've posted with the default unlocked setting, which means your post can help others facing this decision find our community. If you would prefer your post to be private to this community, this post explains how to edit your post accordingly:

healthunlocked.com/cllsuppo...

Neil

[starlifter in reply to AussieNeil]

Thanks a lot for the response and I have a better understanding of my situation my platelets have fluctuated last month 112 and now 84 I am 66 and in excellent health if it werent for the cll. Again thanks.

[GMa27]

Are u seeing a specialist?Always good to get second opinion. I felt fabulous after 12 years on W&W but I had scan & BMB to help determine it was time for treatment. I got 2 seconds.

Covid should not delay your decision.

Juicing doesn't take the place of treatment. 🙏💕

[starlifter in reply to GMa27]

Yes I am seeing a specialist , thanks for the info , with a 17 p deletion I am supposed to start treatment next month but cant get Covid vaccine because the treatment would destroy the antibodies anyway.

[MsLockYourPosts Passed Volunteer]

Definitely ask about the timing of starting treatment relative to getting your COVID shots. I'm all for second opinions. Neil has given a very good explanation of why treatment could make sense now. Have you had a recent FISH test? You would want that in place before discussing which treatments would be most appropriate.

[HopeME]

Hi Starlifter

You have given us little information to help you formulate questions to ask your doctor. The first piece of information that would be helpful is are you being seen by a CLL Specialist? What country are located in? What type of treatment is your doctor recommending? I’m all for second opinions and if you read my background you will see a second opinion would have greatly helped me. That being said, I can tell you from experience that waiting too long to start treatment can be harrowing. I waited too long for a myriad of reasons and my hemoglobin plummeted and it was frightening and painful and I was relatively young and in good shape.

Don’t be lulled into a sense of false security that you can wait indefinitely to begin. CLL typically gives us time to weigh options but when it begins to progress it can progress rapidly. I needed a blood transfusion before I began treatment and several more to get me through treatment and in retrospect I realize I was in serious trouble for a while. I still have a voicemail on my phone from a nurse who called me after my hemoglobin turned up after bottoming at 4.3. She was so excited and happy to tell me my counts were improving. It was almost as if she was telling me I hit the lottery and in some ways that is exactly what happend.

Best

Mark

[Okeefish]

It’s a difficult decision in your case? I’m 82 years old and had been Watch and Wait for 20 years without treatment! My Dr watched Platelets, Absolute Lymphocytes, and symptoms? His decision was made after my fatigue level and IGg levels bottomed out! My Platelets were in 60 range and a bone marrow indicated about 70 percent cancer cells. 13Q Deleted and no mutated, with WBC approaching 90k. I have been on IGg Infusions monthly for 3 years because of very frequent infections! My IGg yesterday was 463 before my infusion and I was hospitalized two weeks ago with pneumonia! I’m trying to point out some factors you may put in your decision equation? My fatigue and pain level were bad last September and he got me into the AstraZeneca Assure Clinical Trial of Acalbrutinib for never treated CLL patients! Outside of some drug side effects, I feel much more alive than I have for years! These new Targeted Pills are fantastic! My WBC yesterday was 20,2 and Platelets were 139, so remission seems possible? Hope this gives a little help to you, and I pray that you start treatment at the best time for you! If I can be of help, feel free to ask! 🙏🙏🙏🙏🙏

[BaseballGardener]

I can share personal experience from my mom, who was diagnosed in 2017, and started taking acalarubrutinib in February, 2020. Her profile was similar to yours, and she also said at the time that she felt fine. What concerns me about your hematology measurements are that both the platelet and rbc counts are low, and your wbc may be doubling in less than 6 months. I totally agree with your doctor's recommendation. You should start a cancer therapy as soon as possible. In hindsight, I even think many doctor's are doing W&W too long. As soon as the platelet counts drift low, it may be a good time to start therapy. In my mom's case, her wbc was reduced 90% in 10 months, and her rbc, Hg, and platelet counts have increased to more normal levels. The real laggard to start to increase was platelets; please exercise caution to avoid any accidents that cause bleeding. Best Wishes - You Will Do Fine! Take charge, can get yourself better!

[Phil4-13]

You state you feel good. That’s good. I had an experience with hepatitis C some years back. I was diagnosed at age 50, and refused the offered treatment for 16 years, because it was only a 30% cure chance and I felt great. No health problems, just that shocking diagnosis. At the 16 year mark, my doctor notified me of a new treatment, Harvoni, with a 98% chance of cure. I agreed. To my surprise, two weeks into the two month treatment I realised that I had been living in a “fog”. It was like a curtain lifted off my brain. I now really felt good. It’s with that memory I travel this CLL journey. My doctor knows from his experience the potential danger as he studies my blood profile. I feel good now, he has mentioned I am getting close to needing treatment and I remember how much better than good I felt after accepting Harvoni. Get a 2nd opinion if you doubt treatment is needed. Talk to your doctor in depth of your reasons to delay. But, don’t push it off simply because you are feeling good. This forum is a fantastic questions and answers from experience archive. Sandra😊

[Big_Dee]

Hello starlifter

Don't start treatment too soon as it may reduce time to relapses, don't wait too long as it can be a long hard road back. Blessings, I understand it is tough decision.