Thanks for all your responses to my post 3 weeks ago. The blood test results on 10th December were confusing to say the least - WBC had increased from 81.6 to 123.5 since the previous tests at the end of November, while neutrophils, HB and platelets were all slightly improved.
My consultant was pushing me to start chemotherapy on 15th Dec, but I felt incredibly well (and still do), and held out the hope that perhaps the complementary therapies and supplements I’ve been having were doing the trick - after all, miracles do sometimes happen! Had all my bloods deteriorated, it would have been crystal clear that I should start treatment, but I just wasn’t sure.
Today I had more blood tests, and results were not at all good: WBC 140.9, neutrophils 1.4, lymphocytes 138.1, HB 99, and platelets right down to 50. The Macmillan nurse is arranging for me to start BR as soon as a space becomes available, but this may not be until mid-January. Meanwhile I'm having 3 vaccinations at my doctors surgery tomorrow morning: Influenza, Streptococcus pneumoniae, and Haemophilus influenza type B.
I’ve never had any of these vaccinations before, and don’t know why I need them now, as 4 years ago they weren’t even suggested prior to my FCR treatment. I’m feeling well right now (though I’m scared and depressed by today’s results) and my fear is that because my bloods are so poor now, having 3 vaccinations all at the same time will push my system over the edge and make me very ill.
Please could you share any suggestions, advice or personal experience of having these vaccinations - whether or not they have caused an adverse reaction, and what I might expect having them all together while my immune system is so compromised.
Thank you for your help,
Ruhi9
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Ruhi9
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Thanks for the additional detail in your repost. Who recommended you should have these vaccinations? I can see that they would be advantageous to have prior to treatment. They are non-live so you can't get infected from them, but you may feel unwell for a week or so.
Unfortunately you are now in the unenviable situation of needing to start treatment fairly soon due to your falling platelet levels, but will not gain benefit from the vaccinations if you don't give them time to work. I'm sorry that you find yourself in this situation, but this is the very reason I keep telling people with CLL to get their non-live vaccinations up to date... I suspect that because you've been previously treated with FCR and your ALC is climbing, that you are unlikely to get much benefit from the vaccinations in any case, but because there is little risk from these vaccinations and potentially some reward if they do give you improved immunity, I can see why they have been recommended.
Perhaps as a community, we need to consider putting this "When to vaccinate after chemotherapy" question to some CLL specialists for their opinion. As I understand it, after FCR, BR treatment, etc, you have very few B-Lymphocytes left, (the Fludarabine in FCR also knocks down you T-cells) so your body is going to struggle to create any antibodies. Sometime after treatment, your B and T-lymphocyte counts will gradually rebuild - hopefully without too many B-cell clones, and that would be the opportune time to have vaccinations.
Here's what Prof Terry Hamblin said abut this in September 2009:
The first thing to say is that CLL patients are very poor at responding to vaccines. If you have late disease and especially if you have been treated by a purine analog (Fludarabine, Cladribine or Pentastatin) or with Campath, it is very unlikely that you will respond to any vaccine."
He does offer us some hope in his comment made after a few replies "It is clearly more complex than my summary. I had one patient with recurrent herpes whose condition remitted on FCR. Both CLL and its treatment cause immunosuppression. Sometimes clearance of the CLL improves the immunodeficiency, notwithstanding the effect of FCR, but it is not predictable..."
It was Dr Deardon who recommended I have the vaccinations when I saw her at the beginning of November as a referral. She said she would hand me back to my consultant here in Bath because I didn’t qualify for any of the new drug trials.
My own consultant then wrote to my doctor asking her to arrange for the vaccinations. When I saw her 3 weeks ago, she wasn’t sure which ones she should be administering because the practice nurse would normally be responsible for these things. So I made another appointment the following week, but was under the weather at that time, so the third attempt to have the jabs was scheduled for tomorrow morning.
Still not sure what to do, as my treatment is imminent - as soon as a space is available. I obviously don’t want to cause unnecessary stress to my immune system if I can help it.
Ruhi9, I can now see how you got yourself into this difficult situation. Don't beat yourself up over it - from what Dr Hamblin said, the benefit to you is likely minimal but still worth doing if you can allow enough time before treatment. It's a pity that you don't have any experience of how you react to flu and pneumonia vaccinations post FCR treatment as that would make your decision easier.
Can you at least try and get Dr Deardon's response on this?
There might be an alternative, which would be IVIG infusion after treatment... in that way you will receive antibodies, cytokines etc. from 3000-5000 people...
The effect only lasts about 20 days, but it is something to discuss with your doctors...
Still the lack of B and T cells might precude this, until a few months, post treatment...
Obviously everybody is different - but I have been "flu jabbed" every year since I was diagnosed 2001
Last year July to Dec 2013 - I received B + R on Clinical Trial -- you might want to read my monthly posts during this treatment.
My Neutrophills fell to less than 1.0 so my consultant recommended 4 weekly IVIG treatment to boost my immune system until my Neutrophills climbed up. (Last check-up -- Dec 14 -- 5.0 +.)
Generally -- with other precautions of avoiding crowds and people with colds and flu -- MY flu jab has helped me avoid the worst...
IVIG treatment -- which has now been made quicker - certianly helped raise my immune system.
Obviously I don't know where you are -- but I think the Gilead Clinical Trial 115 -> B + R + CAL 101 (Idelasilib or Zydeleig.) is still recruiting and you get a 50% chance of NOT getting the Placebo. ((MAYBE ask you Oncologist if this Trial is an option for you.))
If there is anything more I can help with ........ just write to me!!!
You might ask about getting IVIG infusions during treatment. I started getting IVIG in 2003 because my immune system is so compromised and it was continued during the treatment I had then. I start Gazyva at the beginning of February, and the plan is to also continue the IVIG, just not at the same time.
I would just stress the importance of seeking advice from the doctor managing your condition. As mentioned above, we are all different. My doctor has endorsed me taking the pneumococcal jab and pentamadine, but is emphatic on my not having the flu jab at this stage of my recovery - even though it is not live.
Thanks for all your responses - they’ve really opened my eyes to the risks of getting pneumonia or prolonged chest infections with CLL and the importance of protecting ourselves.
Because my treatment was possibly imminent, I phoned the doctors surgery yesterday and cancelled my appointment for the three vaccinations. Two hours later the hospital rang and said the earliest they can start BR is January 12th, which is 19 days from today.
I followed your advice Neil and phoned the Royal Marsden Hospital this morning and spoke to one of Dr Deardon’s nurses and a haematology doctor who both said the vaccines need 14 days to kick in, therefore to get them done now if possible, and that if my treatment plan for BR is brought forward by a week, to decline and go with the start date of 12th January so that the vaccines are able to take effect.
Graham, I also asked them whether I should just go with one or two of the most essential jabs so as not to overload my system, and they said no, I should go with all three even though I am now stage 3 CLL and starting treatment soon. So I phoned my doctors surgery who were thankfully able to squeeze me in, and I’ve just returned from the dreaded visit. As I’ve never had any of these jabs before I’m crossing fingers that my body doesn’t go into sudden shock!!
I don’t know how I’d manage without your advice, help and support on this forum; my consultant and the nurses at the haematology unit here in Bath are all working under a lot of pressure, and I get the sense that they are exasperated and frustrated by my questions and uncertainty, so I end up feeling pushed in a corner and react by refusing treatment which I did last week when I refused to start BR on 15th December.
Anyway, I wish you all peace and blessings for Christmas, and a very healthy New Year!
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