Treatment choices and work or not to work

Hello again.

When I returned to the hospital again on Monday the doctors are now urging me to begin treatment fairly soon. My WBC doubled from 68 in April 2016 to 118 in October and then 206 a few weeks ago. I don't remember my other blood numbers but no other concerns were mentioned. She said if we leave it another 6 months and it doubles again there could be serious consequences. I am 52, pretty fit and apart from swollen lymph nodes my health is fine no B symptoms at all. She has booked another CT scan and bone marrow biopsy then told me to think about two possible treatment options before I return in two weeks to discuss things further.

The two options they have given me are FCR and a trial which is Rituximub with Ibrutinib. I would be grateful for any thoughts or information on which one would be better for me.

The other thing that is worrying me is whether I am going to be able to work. I am lucky in some ways as I am self employed just a couple of days a week at the moment so will probably be able to work around my treatment. As I work in schools I get school holidays which means I could go the first round of treatment without working. The problem about schools is the doctor has advised me not to work with young children because of the risk of infection. I cannot afford to not work at all as I have a family to support but obviously health will have to come first. As I am a therapist I only work 1 to 1 with a 3 or 4 kids a day and I have my own room. I am wondering if I am really careful about cleanliness and not working with any poorly kids if I will be able to do it. I have kids of my own so am just as likely to catch bugs off them?

One more thing. Neil you said I should get a second opinion re treatment. How do I do this? will I go to another hospital via my GP. My current Hematology ward is MRI Manchester.

Thanks again everyone. Any input has always been helpful on here. Once I have had my first round of Chemo i'll hopefully be in a position to give advice to someone else in my position.

Ian

19 Replies

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  • Have you had a FISH test or an IGHV mutation test? Those tests are really vital to determining the type of treatment.

  • rcknow

    This patient is in the U.K. and direct IGHV is not done outside a trial and FISH would be performed later just prior to treatment in all likelyhood.

    Please understand treatment approaches can vary by country...

    CD38 and Zap70 are well established surrogate markers, that have been used for 15 years to indicate IGHV mutation.

    Telling someone something is vital, when it may not be available in their situation, is stressful.

    ~chris

  • I apologize for that. I didn't know that testing options varied by country. Having been through this myself in the past few months, I certainly didn't want to stress anyone out.

  • They have mentioned more tests prior to treatment so maybe?! Thanks!

  • Sounds like you are joining the FLAIR trial (IR vs FCR), but if so, I don't understand how you get to chose which trial arm you will enter. As rcknow noted, you need to know your FISH test results in order to know which is the better choice for you. IGHV testing is probably not available to you.

    With regard to gaining a second opinion, I hope those more familiar with centres of excellence in the UK can recommend possible centres near you that could provide you with that, plus give you feedback on how good the CLL patient care is at MRI Manchester. With doubling times roughly every 6 months, you won't be able to avoid treatment for too much longer unless the CLL stabilises.

    I admire anyone with CLL that continues to work in education, particularly with young children and where there's limited opportunity to avoid contact. There are a few techniques you may be able to use to reduce your risk however, such as:

    1) Keep your distance - ideally 2 metres or more

    2) Educate the kids about how illnesses are spread and encourage them to wash their hands

    3) Look at where any air-conditioning vents are in your room. Try and place your desk under an outlet, so the outflow of air is blowing any sneezes/coughs away from you. You can determine if a vent is taking air out of the room or letting it in by:

    a) seeing which way a thin strip of paper stuck to a ruler (say) is moving

    b) looking for a cleaner vent. Dust builds up on vents where the air is leaving the room. Having your desk under one of those vents will result in any airborne bugs being dragged closer to your desk, so you don't want to be sitting under a vent like that.

    Please keep us informed of your progress,

    Neil

  • Thanks Neil. They have mentioned further testing as well as CT and bone marrow biopsy. Maybe that will shed more light on things. Thanks

  • I'm currently participating in the flair trial, I was fortunate enough to get on the Ibrutinib/ Rituximab arm, there isn't currently a choice between either current arm its done purely on randomisation through a computer.

    The haematologist your under will have your fish results with your IGHV, it is currently done here prior to any treatment but they will be reluctant to give you a copy or any results. I finished my last Rituximab infusion in April and I'm currently just taking the Ibrutinib with a follow up CT scan and bone marrow biopsy in July, results are very good and aside a few minor side effects I'd definitely recommend it over FCR, I'm not sure I could give you any good advice in terms of your job as I've done everything possible to avoid catching anything during treatment, I would however suggest applying for the ibrutinib/Rituximab arm due to less toxicity and further possible damage to your immune system, from my own research FCR is the weapon of choice with some favourable markers in the illness due to long remissions or a possible cure.the flair trial is shortly going to be expanded into four arms with the possible discontinuation of the ibrutinib/Rituximab further down the line, there going to be using Ibrutinib as a single agent and also soon going to adding a new and very promising drug along with ibrutinib Venetoclax.

  • Glad to hear your treatment had gone well! They did mention that another arm for the FLAIR trial was going to be available from next week so I will have more choice. Thanks!!

  • Eebie,

    I wish you luck in your decision. As Chris said, you have to take into account your choices trial vs non-trial with your health system. I am in the US and have great insurance. I was able to get ibrutinib approved first line (I am not 17p). My decision was FCR vs Ibrutinib detailed here: healthunlocked.com/cllsuppo...

    My primary Hematologist wanted me to go with FCR and save Ibrutinib till relapse. I am IGHV unmutated. I was willing to pay out of pocket for the test (never got a bill). I went to a CLL specialist and he was ok with both choices, but had the Ibrutinib+Venetoclax trial opening up. I went with the I+V trial, which I am on and doing well.... so far. The almost 6 year data on first line use of Ibrutinib is pretty remarkable (although a small group). I would guess it will be better with Rituxan added.

    In the end you need to base your decision on what is best for you and your family with the available treatments. I wanted to hold off on any chemo drugs as long as possible. I am 45, so like you have long road ahead.

  • Everything goes better with Rituxan... powerful Hamsters union... 🤣

  • That sounds like the 60's commercial slogan ....."THINGS GO BETTER WITH COKE!!" "Everything goes better with Rituxan!"

  • Hi! I felt pretty well when I started my treatment lady year although I did have HUGE lymph nodes and a very low hb. My doc said it was good to go into it well ...

    As far as work us concerned, it's going to be hard to tell . I am a teacher ... primary. . It will depend on how your immune system recovers after each chemo .. After my week of feeling rubbish after chemo, I felt great but my neutrophyll count was always poor so I was advised to not work ... discuss with your consultant . Here for you. Take care . Beth x

  • Thank you Beth ☺️

  • Get a referral to Dr Bloor at the Christie.

  • Ibrutinib is a great drug, and won't make you chemo-sick. FCR works almost immediately.

  • I have just started ibrutinib 4 weeks in and as far as work goes into only stayed off the first 3 days and have worked ever since and the early side effects stiff joints and bone pain have all but gone although I found getting up and going to work now matter how stiff I felt made me feel better the trail they are offering you is a new one but I believe it's good I'm sure you will still be able to work although there will be days when you can't best of luck and look forward to the future

  • Thank you!! Ian

  • If you can get on the imbruvica Rituximad I would highly recommend it over FCR. I am on imbruvica and it worked great without many side effects.

    Since you are young in my opinion it's better to use a targeted therapy like Imbruvica thus not to impair your bone marrow or open you up to future secondary cancers like MDS.

    Since it is a clinical trial you may not have the option. Many people use FCR and have a good long-term results.

    If you are 17 P deleted or have P 53 issues they should not use FCR. It is really bad in thise situations

  • Hi! I recommend the FCR. Even though when you read about it, it sounds very toxic and chance of lethal side effects especially during 1st infusion, these risks are very small, many 1% chance of happening. I am 65 and not fit, but my 1st round went very well. Had some nausea a few days and it wasnt bad. Good thing about FCR is that its 6 months and you are done...maybe for 15 years! I wish you the best in whatever you choose.

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