watch & wait - long to treatment ?

Hello, I was dx in Jan this year and am still on W & W. My ALC in July was at 9.5, WBC.. 16 down from 19 at dx.... ANC..5.7 HGB...15...PLT .... 201 RBC .... 4.76 all seem to be stable for now. I want to stay healthy especially with my 3 kids still in school, lots of germs coming into my home. What immunizations should I be getting ? I know no live viruses! Also I do have to travel on a plane usually 6-7 times per year for work, I hate all the airplane germs :( I cant wear a mask, don't want the attn. should I be concerned ? Lastly, since I am 11qdel and unmutated my specialist DR Sharman in Oregon says when my time for treatment comes, he'd put me on Ibrutinib...from what I've read that sounds like the best choice, does that sound right ? I'm not quite sure if I'm a complex karyotype but I think so since I have 3-4 different chromosome abnormalities, not sure if that makes any difference. Any thoughts on how long I have before treatment is needed...? I have slightly swollen lymph's everywhere but nothing too doc thinks maybe 1-2 years, but who really knows. My blood work seems stable.

8 Replies

  • Hi Garrick66,

    There are several issues in your post, but I’ll just reply to the vaccinations bit…

    Chris (Cllcanada) posted about this recently, and gave a very useful list of vaccines that are permissable in CLL.

    This list covers a wide range of vaccs that are “permissible”. However, we probably don’t need ALL of them (unless we know we might be at risk.) Most CLL experts just recommend:

    1) Annual vaccs for flu

    2) Two pneumonia vaccs - first PCV 13 (also known as Prevnar 13), then at least 8 weeks later - PPSV23 (also called Pneumovax 23). The PCV13 (Prevnar) has only recently been put on the recommended list for CLL folk, but evidence shows that it is MUCH more effective than the PPSV23 (Pneumovax). Some doctors are still not aware of Prevnar and only give Pneumovax, so you need to make sure you get the Prevnar, and have it first.

    3) Haemophilus influenzae type B (HIb). This is different from the annual flu vacc, and is well worth getting, as HiB is a nasty bug that can also cause Pneumonia and meningitis.

    4) Consider boosters for tetanus/diptheria/pertussis (whooping cough), if it's been over 10 years since previous vaccs for these.

    5) Consider Meningococcol vaccs (There are different vaccs for different strains. I had vaccs for MenC and MenB, followed by boosters )

    6) Consider Hepatitis A and Hepatitis B

    There are some “considers” here, so it's always a good idea to check with your haematologist, in case there are reasons why you shouldn't have any of the vaccs listed.

    The following link is helpful. (Thanks to the folk here who first found it). Scroll down to the second chart and look at the line for “weakened immune system”. It's probably worth printing this chart out, to show your doctor if necessary.


  • Hi there. I too have 11q deletion and I didn't have treatment for 3 years. My wbc was 180 and lymph very large around neck armpit and groin. I had 4 rounds of FCR which lasted well for 2 years - ibrutinib wasn't available for first line treatment then and I'm now on trial for acp196 (acalabrutinib?) which seems to be working well 2 months in. I didn't have ivig until 2 months ago 5 years from diagnosis. Be sure you need it before you have it. I'm in London and I think treatment plans in usa are slightly different due to your insurance companies as well. I would also check what's happening on Europe before you agree to any treatment as usa seems to treat earlier. Feel free to ask any questions. Good luck!! Lisa

  • I have been getting the flu zone vaccine (higher octane) twice s year. Dr Terry Hamblin was the one who originally suggested, I believe, that it could be helpful to do two flu shots. I am wondering about the trivalent vs. the quadrivalent. Anyone have an opinion?

  • I have quads when available, twice a year in Canada for 10 years...mid October early February...


  • I was diagnosed in 2013 and have WBC numbers similar to yours. My hematologist told me at the time of diagnosis that it would be 8-10 years before I'd need treatment, most likely, and that many don't ever need treatment.

  • The sooner you get the vaccines, the better. Immune response decreases over time. It is impossible to predict when treatment will be needed but almost all folks with unmutated and 11q deletion need treatment sooner rather than later.

  • Thank you Dr. Koffman, et all.....I appreciate the advice. I will be making an appointment quickly with my GP to start the pin-pricking process. Dr. Koffman, I've enjoyed reading your blogs and your story is close to mine at least with our particular flavor of CLL.... I'm inspired by your tale and the courage you've shown on the winding path you've been on. IBR seems to have been a great tx for you....I am curious your thoughts on ACP-196 or even ABT-199 if you see those drugs or combinations as a frontline tx down the road. Do you see those drugs as reserves for if/when one might become resistant to IBR..? Sharman says he really likes the ACP-196, claims its like IBR but better! Thanks again, I'll be looking forward to your upcoming blogs especially from ASH in San Diego, should be some good stuff this year....I hope.

  • when getting vaccines, is it safe to get multiple shots at one time or is it better to space them out ?

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