Vaccinations in CLL-Instructions for "Beginners"

[Yalokin]

Why am I posting this post-because at my last appointment with the hematologist, he was so tired and I was so scared (he is the big boss hematologist at this hospital) that I forgot to ask him about the vaccines.

I "swallowed" my tongue.

Maybe I got a scary dementia (I think I invented a new disease).

Barely speaking, he told me that it would be appropriate to see you in 6 months (on his lips it was 6 years, and in his mind - it's best not to come again). People are happy in such a case, but I am not.

Well, these days I was going to ask, but these days I'm "tied" to the desk and the computer (which is obvious) and I found the following post:

cllsociety.org/2019/12/vacc...

I didn't have the nerve to dig through the entire 76 page database on vaccines and post it with apologies in advance if there is any duplication.

Even if it is, I think it will be useful to someone.

In our forum here: healthunlocked.com/cllsuppo...

[CLLerinOz Administrator]

I expect you won't be the only one here who has left an appointment without asking a question you meant to ask. I try to take a written list of questions to my appointments if I have important things I want to ask.

There is an excellent pinned post on the topic of vaccinations for those with CLL that you may also find helpful:

healthunlocked.com/cllsuppo...

[Yalokin in reply to CLLerinOz]

I had a list, but I swallowed my tongue. It's a bit complicated to explain the exact reasons specifically for me, but the fact is the fact. Thanks for the link.

[mrsjsmith]

Thank you for a very useful list. This is something I have been questioning my hospital about because information has been non existent.

Colette

[Yalokin in reply to mrsjsmith]

Me too. Also take a look at the post on our forum where there are some newer vaccines. I recommend you read it. It turns out that these vaccines are only available by prescription in our country, which will inevitably lead me to the doctor again...

[mrsjsmith in reply to Yalokin]

Just noticed that Polio is not on the list and recently it’s been discovered in the sewage water in London. I discussed vaccines in general with my GP yesterday and she suggested asking my CNS which boosters I needed.

Colette

[PaulaS Volunteer in reply to mrsjsmith]

Hi Colette, The oral polio vaccine is live so not good for us, but the injected sort is not live, so should be OK.

I haven't seen polio boosters recommended for CLL patients, but that's probably because there hasn't been a need for it. However, with polio being found in sewage water in London these days, this might change.

I'll be interested to know if anyone has heard any official medical advice on this.

Paula

[mrsjsmith in reply to PaulaS]

Paula,

I checked back on my records and I had inactiv polio vaccine in 2009. When I discussed on Tuesday with my GP she suggested I check with my CNS if any boosters for various vaccines given then were still needed. She admitted that boosters were not now routinely given and she has had to be advised on polio vaccines because it is new to her because of her age, but she understands it is now being given to young children and vulnerable could be added to the list.

Just something else to add to the list to be aware of.

Colette

[PaulaS Volunteer in reply to mrsjsmith]

Thanks Colette, that's good to know. I will add the possibility of Polio boosters to my Vaccinations post. healthunlocked.com/cllsuppo... Sadly many of us, like you, have found we need to be pro-active and take the initiative re getting the relevant vaccinations.

Haematologists rarely mention vaccinations - they leave it to GPs. GPs don't keep up with the needs of the immuno-compromised, they expect the haematologists to tell them. So it's up to us to be well-informed and up to date. Not easy sometimes...

Paula

[mrsjsmith in reply to PaulaS]

Agreed Paula we are stuck in catch 22 being expected to continually be our own advocates. But some hospitals are proactive. I just wish they all worked within the same guidelines.My GP did suggest checking with my CNS re polio vaccine so if I get a reply I will let you know.

Regards

Colette

[gardening-girl]

Yalokin, I had to laugh when I read "Barely speaking, he told me that it would be appropriate to see you in 6 months".

Just yesterday after sitting for 1.5 hours in the waiting room of the hospital, looking forward to a six month visit with my oncologist, one of his nurse practitioners came in the room, handed me my CBC and CMP results, and said "See you in 6 months."

Apparently, my oncologist had just returned from a two-week vacation and was overwhelmed with ‘high need’ patients. As pleased as I was with my stable boring test results, I would like to have seen him, and did have a couple of questions.

Oh well, maybe I also would have experienced scary dementia (SD), and not remembered to ask the questions. Maybe better not to know about the SD symptoms. 😇 At this point, all is well, I’ve been on ibrutinib for 7 years.

🤞

Thanks for the vaccine post.

gardening-girl

[Yalokin in reply to gardening-girl]

✌️

[Big_Dee in reply to gardening-girl]

Hello gardening-girl

I can certainly understand the doctors' issue, however one of the big problems with no face to face with doctor, is all those items like lymph nodes, leg swelling and breathing performance exams. I have always been on 3 months checkup schedule, which is good, 6 months or yearly would put me one foot into grave before anyone noticed. Blessings.

[Edalv in reply to Big_Dee]

Exactly, during my last appointment the nurse asked me, after going over my blood work, if I still wanted to see the doctor, to which I replied “of course I do” that’s the main purpose of the visit… I can read blood labs after 18 years of practice… 🙏

[patagozon]

I always check with my hem/onc before getting a vaccine that he hasn't okayed previously. He did okay getting the MMR vaccine and that was a few years after I was diagnosed with CLL.

[PaulaS Volunteer in reply to patagozon]

MMR is a live vaccine, Patagozon. cdc.gov/vaccines/vpd/mmr/hc... I'm very surprised your doctor okayed it for you.

Paula

[patagozon in reply to PaulaS]

That happened before I discovered Health Unlocked; otherwise, I would have asked him why it was okay to receive a live vaccine. I think at the time my WBC and ALC counts were still really low (35K to 45K range), so maybe that's why he thought it would be okay.

[PaulaS Volunteer in reply to patagozon]

Well the good thing is that you didn't have any bad effects and hopefully got some useful antibodies from it. 😀

[JoannG]

This is most helpful. Thank you for taking the time to post it.