Yesterday my doctor phoned to see how I was doing on my treatment .
I asked her about having both the pneumonia vaccinations and she said that she would only do them if my consultant agreed .I didn't tell her but when I asked my consultant it was a definite no no .
Where do I go from here ?
Any help would be much appreciated .
Brenda
Brenda, press your consultant as for why it is not for you. You can mention that it's a CDC recommendation. It's debatable how effective they are in us so if they say no, don't get to hung up on it but please share their response.
Jeff
Thank you Jeff .
I go again on the 19 October so will ask again .
My consultant is Italian so maybe they just don't believe in the vaccination in Italy .
I will poste what he says after I go .
Hope you are keeping well .
Brenda☺️
Brenda,
During W&W I asked my consultant at Moffitt Cancer Center and the leading specialist and he said no because I wasn't 65y/o.
My new specialist said go ahead but don't expect the normal immune response.
Maybe time change or doc change was the difference.
Jeff
I am 49 and on w&w (dx. In May) and I just saw my cll specialist at Dana Farber and he advised me to take both vaccines, the Prevnar 13 first followed by the pneumovax 8 weeks later.
Hope this helps.
The CDC has some recommendations, however outside the U.S. their influence diminishes ...
Print out this page and give it to your doctor...
cdc.gov/vaccines/vpd-vac/pn...
Thank Chris
I did take a print out to my consultant when I saw him last .I will give my GP one and see if I can push her .
Hope all is well on the Ibrufinib .
Brenda
Hi Brenda, I find it hard to understand why your consultant said the Pneumonia vaccs were a definite no no.
My GP (in Sheffield) first said they weren't appropriate for me, but when I printed out the CDC recommendations (from the link Chris gave), to show him, he took it more seriously and said he'd check it out. He phoned a few days later to say the 2 vaccs (Prevnar and Pneumovax) were now recommended for folk like me, and he arranged for me to have them (8 weeks apart). When I mentioned this to my consultant haematologist, he was pleased and said he wished all his leukaemia patients would have those two vaccs.
I hadn't yet had any treatments at that time, and I realise it might be different for you, being on Ibrutinib. But you need a proper explanation of why your doctor thinks those vaccs are a no no, when other CLL patients (in the UK) are being given them.
Best wishes,
Paula
Hi Brenda. I am kind of confused, are you on Imbruvica and thinking about having both the pneumonia vaccinations? If yes, I am also taking Imbruvica and I did receive my first Vacc a few months ago which made me feel terrible for a while. My GP told me it was a reaction to the Vacc. Both my GP and oncologists encouraged me to have the Vaccines but neither one was sure of the result. There are not enough information available for anyone to make the decision. In our case, It is a flip of a coin. I am planning to have the second Vaccine within a few months. Good luck.
Shazie
Shazie,
Could you please define "terrible "?
Thanks,
Jeff
Hi Jeff. I had body ache and I felt lozy for a week. It felt like I had a bad flu. My energy levels were at lowest level since my diagnosis. Hopefully the second Vaccine wouldn't be as bad. Again, both of my doctors want me to be vaccinated. My GP who is been treating immuno-compromised paitients like me for the past 25 years clearly explained that punemonia is very dangerous and could be deathly in my case. Lastly, he told me the new recommendations in U.S. Is one year apart from each other. Also, he wants me to have my flu shot at the end of October.
I had the Pnuemonia vac last year but not the Prevnar ,I also had the shingles vac earlier in the year before my cll was discovered .I mentioned this to my Dr and she said the Pnuemonia vac last a lifetime ,and asked if I had any reaction from the shingles vac .
I will definitely be asking my consultant again when I see him why he doesn't agree with the vac .
He was adamant that I didn't have it .
Thank you all for your replies
Brenda
Hi Brenda,
The day after I'd had the Prevnar vacc, my whole body felt a bit hot and aching. It wasn't too bad, and it only lasted a couple of days. When I had the Pneumovax 8 weeks later, I had no reaction at all. I wasn't on any medication or treatment at the time.
After reading about Shazie's bad experience, I thought I'd look online for adverse effects of Prevnar. It was a bit complicated and confusing, but the 2 links below were probably the most helpful. As with any vaccine/medication, some people will get some bad reactions, but not everyone and it's unpredictable.
Those links didn't mention people on Ibrutinib, but there seem to be a lot of factors that could complicate the situation. So, it's great that you're going to question your consultant further, about this. Maybe he has good reasons for refusing the vacc, but you need to be told what they are...
Best wishes
Paula
P.S. You say your GP told you that the Pneumonia vacc lasts a lifetime... However, I think the recommendations for Pneumovax (not Prevnar) is that it's given every 5 years for immuno-compromised people (like us). Having said that, the Pneumovax seems to be much less effective that Prevnar, so it's more important to get the Prevnar done (unless of course your consultant has good reasons not to do it in your case).
The naming of these Pneumonia vaccs can be confusing. Prevnar 13 is also called PCV13. It is a "13-valent pneumococcal conjugate vaccine"
Pneumovax 23 is also called PPSV23. It is a "23-valent pneumococcal polysaccharide vaccine" .
Bless you Paula for taking the time to look into this for me .
As I said I will ask when I go .
How are you ?
I hope all is going well with you .This is a strange disease ,I tick along quite nicely and then I get a day when I feel like S---.
Yesterday I had a dreadful day ached felt really tired nauseas pain down my right side .Today I'm back to normal ( what ever normal is )
The weather dosnt help in England either .I hate the grey skies .
Still today in the south it's sunny thank the Lord .
Take care and I hope you stay well .
Brenda
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