? RSV vaccine

[Islandjewel23]

Hi folks, I seem to remember a mention of the RSV shot not being great for CLL pts? Anyone have info or thoughts on this?

And another question: I got my latest Covid booster a few weeks ago. During the injection (by a pharmacist) I noted I didn’t feel the med going into my muscle, and looked down quickly enough to see that the needle was at an angle. I’m a retired nurse so am pretty versed about IM injections. I’ve been worried that maybe I didn’t get any med into the muscle. I had quite a large area of tissue irritation for a couple weeks after, but no muscle ache. Everything I could find said that if it didn’t make it into the muscle it wouldn’t metabolize the same and would probably be a wasted vax. I could probably fudge a bit to get a repeat, but are there any thoughts from y’all about whether this is advisable or not? I didn’t get great responses from the first 2 vax, (per an antibody test on a trial) so I want to get as much as I can from all of my subsequent shots! Thanks for any and all considerations (and please forgive any typos!) Julie

[Alex830]

My CLL specialist advised me to get the RSV shot. He told me they had a lot of patients last year who had serious issues because of RSV. He did say because I am in treatment I might not get a big response. Had it last week, tired and painful arm for 2 days, nothing serious.

[Bluemerlegirl]

I asked my doctor a few weeks ago about getting the RSV vaccine. He said absolutely yes. As far as your covid shot, I would explain it to my doctor and see what he thinks as far as having a repeat.

[HopeME]

My CLL specialist recommended I get the RSV vaccination although he suggested I wait until one year after my last Obinutuzumab infusion to get the best result.

[Tonybdog in reply to HopeME]

Same here

[AussieNeil Partner Administrator]

This recent CLL Society article on RSV vaccination cllsociety.org/2023/09/what... concludes; "It is not a bad idea for those with CLL / SLL to consider getting the RSV vaccine, especially given the number of high-risk adults who were hospitalized last winter with RSV. CLL Society recommends that you talk with your healthcare provider about the risks versus benefits for you personally and participate in shared decision making."

Neil

[DanBro1]

I got the RSV shot along with my flu shot a few weeks ago. No problems, I am waiting to get my new Covid shot, since I recently tested positive for Covid (with mild symptoms).

[Vlaminck in reply to DanBro1]

If you just tested positive, would think you are already "boosted" -- would wonder if new shot so soon would do anything.

[DanBro1]

I've been told to wait 3-6 months after you've had Covid...... Also, I don't know which Covid I was infected with.

[Pin57]

As far as a covid shot repeat, I did that back in early 2021 upon a very low antibodies result from my first Covid shot (J&J). I was in the LLS Study tested for antibodies from 2021 to Dec 2022. I had checked with my CLL and PCP doc if getting a new set of covid shots (2 Phizer shots) right after the generally “failed” J&J shot I had was a good idea. They agreed it carried low risk to redo the J&J Covid shot with a pair of Pfizers.

Remember back in March 2021 we were just starting to get Covid vaccinated and prior studies n stories in 2020 and early 2021 were grim regarding those with blood cancer getting covid resulted in an unusually very high % of deaths from contracting Covid. There was an European study back then, I still have that study article (it was posted here on HU back in 2021) and I’ll never forget the % death was about 30% of those that got Covid (and had blood cancer) had died from Covid per that European study … think study was done in Italy. Wow …. that way high percentage scared the heck out of me.

Having been dx with CLL in Sep 2020 (on W&W) but reading/hearing those type of stories and then getting my first covid vaccine shot (J&J) but had low antibodies result (100 U/ml), I was determined to try again after speaking with the head of LLS Study.

He said that was a low antibody count from the vaccine shot n that healthy folks typically get antibodies counts in the thousands from the Covid vaccine shot. He didn’t know what the antibodies counts meant regarding protection level.

So … given what I knew at the time and that I might be vulnerable to die much more likely from Covid than other folks, by having CLL, I went ahead and got reshot twice with Pfizer shots. It was against the then CDC guidelines to get a second shot but … looking back they didn’t know alot about Covid n vaccine shots effectiveness then. In fact, later on in Oct 2021 they finally noted that the J&J shot was not a good one and advised those that got it to get new shots from Phizer or Moderna. That was a 7 month gap (March-Oct 2021) for CDC to make that advisement. Could have died waiting on that news to get reshot.

Long story but to sum it up I was proactive to get reshot right away.

Luckily it worked for me to get reshot. My antibodies tested to the max level thereafter per Covid shot after shot (about six months apart) to Dec 2022. Just got my 7th covid shot a week ago and antibodies are back to max (> 25,000 U/ml). In an 11 month time span between shots, it had dipped to about 9,000 U/ml, a 65% (or more) waning % in antibodies…. But still a lot of antibodies left. Vaccine can and do work for some of us lucky ones on this forum. Many don’t generate much or any spike antibodies unfortunately .. but if I were you….

I’d suggest you get reshot (just my opinion n I’m no doc!) …. But…. First talk with your doc(s) regarding your situation and get their advice on a reshot and to evaluate the risks in doing so, or in not doing so.

Good luck

PS - Got the RSV shot same time as Covid shot on advisement by my docs. Had a one day reaction feeling puney, small fever, sore arms, etc. Feeling great now. Had high dose flu shot a week earlier (I’m 65). I believe in vaccinations bigtime … all of em that are recommended. There is a great pinned post here on HU about recommended vaccinations n IMO it is one of the all time greatest posts on this forum. A lifesaver.

[AussieNeil Partner Administrator in reply to Pin57]

Thanks for appreciating this, what we hope is indeed a life saving post, which several of our support team have worked diligently on over the years;VACCINATIONS FOR PEOPLE WITH CHRONIC LYMPHOCYTIC LEUKEMIA (CLL/SLL) healthunlocked.com/cllsuppo...

Neil

[Pin57 in reply to AussieNeil]

Thanks for posting the Vaccinations for CLLers link. It’s a great piece of work and the efforts that goes into that valuable post by the many admins/volunteers is highly appreciated by us on this forum.

[Drago1941]

I asked my oncologist in Canada a couple weeks ago about getting the RSV vaccine. I'm being successfully treated with Calquence. Her response was that there may not be a good chance at responding to the RSV vaccine or others as CLL patients are immunocompromised. Her recommendation is to take seriously all Covid-19 precautions such as wearing a mask, stay away from public gatherings and washing hands. Given the expense of the RSV vaccine, the oncologist thought it was not worth the expense. Taking precautions was a better option. Not sure about this, but this is what I was told and see that her recommendation contradicts what other specialists say. I'm confused.

[HopeME in reply to Drago1941]

What is the cost of the RSV vaccine in Canada?

Best,

Mark

[Drago1941 in reply to HopeME]

The cost would vary province to province. In my province it is CAN$300 out-of-pocket as it is not covered by health care.

[Islandjewel23]

Thanks all if you for your responses! And AussieNeil for reposting that great article. I am a firm believer in all vaccinations, so will schedule the RSV as soon as I can. And thanks y’all for the thoughts/info on redoing my Covid shot. At least it sounds like it wouldn’t be a BAD thing. I’ll talk to my onc doc about that. So it sounds like we are all doing the safe practices Re all infections. When I occasionally balk at a lifetime of this, it’s nice to know I’m not alone! Keep up the good work to stay healthy!!