So my oncologist was less concerned about RSV but my primary care physician was pretty insistent I should get an RSV vaccine.
US Center for Disease Control recommendations are for 75+ years or (60+ years and immunocompromise) to get this vaccine. So that unfortunately means that regular pharmacies won't administer this to me as I have not yet reached 60.
Anyone have experience wheedling the pharmacies into providing RSV vaccination? And/or oncologists definitively saying to skip it?
My CLL specialist told me I should definitely have it. But if I wanted to get it before age 60, my health insurance would not cover it, and I was told that this was true for all commercial health insurance. So I waited until I turned 60, and then I got it. I had no side effects that I can recall.
Debbie
I am 73, CLL Specialist said not to worry about it, my GP goes with what my specialist says on this kind of thing. BUT I do NOT have a history of bronchial issues, pneumonia etc. My respiratory infections tend to stay “upper”.
Your reply prompted me to write a post that puts advice about RSV vaccination for those with CLL into some context. It highlights the general advice alongside the need for advice from a CLL specialist that takes our individual circumstances into account.
healthunlocked.com/cllsuppo...
CLLerinOz
My CLL gave me hypogammaglobulinemia. I contracted RSV seven years ago, which turned into pneumonia and left me with lung damage - bronchiectasis. I now live with a chronic productive cough, which wakes me several times during the night and is awkward socially. I wish there'd been an RSV vaccine back then.
Depending on the doc's practice, they may vaccinate. I got my RSV billed & done by a nurse in the infusion room at my CLL Specialists. I go to a local University-affiliated healthcare facility to get Covid shots, which happens to be a freestanding building with physician exam rooms and treatment rooms, off the Main campus. I stay out of retail pharmacies, I have zero antibodies & not all the little closed off areas where they administer them are set up like a standard exam room. People in W&W, or who know they are making measurable antibodies, may not have the concerns I do, and a retail place is fine. But doctor offices are experienced at billing when we don't meet the standard guidelines the retail pharmacies must follow.
I paid the fee to have non funded RSV vaccination. Gives me peace of mind I've done my part in prevention for my future, and that peace of mind I've done what I can.. is worth it. 
Same. Paid A$300 or so for it. A friend of mine with CML was much sicker with RSV than when he had Covid.
I had RSV last Spring, followed by pneumonia. I have never been so sick. Vaccinations typically wipe me out for 5 days so I have yet to get the RSV vax. Bad decision on my part not to just take the time off and get it over with. Now they are checking my heart and lung functions. I couldn't tolerate Obinutuzumab, so next week I start Venetoclax. As soon as my specialist clears me to receive the vaccine I plan to get it. Maybe your CLL specialist could help you get it.
I’m not sure why, but when I asked the specialist a couple of times during two separate visits whether or not I should get the RSV vaccine, the answer was not being all that keen about getting it . I’m still leery about having another COVID vaccine with my fainting experiences upon rising in the morning.
Both my CLL doctor and my primary care doctor said to get the RSV shot. I’m in the US and 74. Got it about a year ago at the local grocery store pharmacy. No negative reactions.
I first saw the recommendation to get the RSV shot on the AARP site. My PCP said I didn’t need it. Several months later I received a usual AARP recommendation saying again to get the shot if I was immune compromised. He changed his mind and I simply signed up at my local Safeway, no issue. I was 73 at the time.
None of my doctors mention it. I stopped getting covid boosters in 2021. I had a very bad digestive reaction. I have no history of upper respiratory diseases. I am in remission 7 years. By 10th they will use the word cured. I get sick far less than my non CLLers. No more shots for me. I did get pneumonia shots 5 years ago & continue to get flu shots since my teen years. Doctors don't like to push shots since they could be liable if u have any major issue.
I turn 60 In October and will get the RSV vaccine then. I wasn't able to get it approved earlier through commercial insurance. My CLL specialist at Univ.of PA recommended it and tried to get it approved but was unable to. It is $300. I did a slew of vaccines in the fall- pneumonia, Covid, Dtap, flu- so I decided to wait until this fall for RSV. I'm doing very well on Calquence and I tolerate the vaccines well. I hope this information is helpful to you.
Thanks - my issue is more getting anyone to administer it when the CDC guideline says 60+ and I'm not 60 yet. We'll see if I can work around that.
go to a Walmart…they will give it to you. Just have your doctor send in a script. That’s where I received mine. And yes, u should take it. My daughter is a physician and she also advises to get it. She sees many really sick people with RSV and usually not vaccinated.
Thanks - this will help me navigate the US system. My primary care doc recommended it and I don't mind paying the non-insurance rate within reason... but the pharmacies tend to be pretty by-the-book on this and CVS at least won't even let you sign up for RSV unless you're 60.
You can just walk in at Walmart…
My GP is adamant that I get the vax, but she watched how ill I was when I contracted RSV 3 years ago. I was sick for 6 months and it was horrible coughing constantly and unable to catch my breath. The vax cost me $350 but I don’t care, I never want to feel that helpless again.
CVS won't let you sign up for it online but if you go in person they will ask you the questions and let you do it.
I agree, with the caveat that it's likely up to the pharmacist. Some won't step a tiny inch "outside the box", others look at the big picture & fiddle with things so they might get insurance to pay.
Especially if you are willing to pay cash, and not have to fight the insurance company. I was just looking at the CPT codes to check for loopholes/how to code outside the "recommendations", if there was an obscure one for "other". I couldn't find the number, but I don't pay to have full access to all CPT codes like billing offices do. Apparently there is some sort of "special circumstance:
"When RSV-mAb immunization is indicated by the high risk associated with RSV infection in certain children or in special circumstances (eg, following cardiac surgery with cardiopulmonary bypass), diagnosis codes supporting the indication for the administration may be reported in addition to Z29.11" (my emphasis in bold. The example is generally not the only indication of a "special circumstance").
publications.aap.org/coding...
I am reading the US cost is around $350 if insurance won't pay.
I am going to press this issue with my specialist; there is a MAB, not vaccine, that also exists for RSV but it's indicated forinfants/young kids. I know I have zero antibodies. I wonder if I can find a way to get the passive antibody approved, if I do I'll let you know.
By any chance, do you have Medicare Disability healthcare insurance? If so, a physicians office may be able to use the *Medicare* billing code to get it paid. Possibly a pharmacist, if you explain your insurance is a Medicare Disability & they need to use the Medicare billing code. I got my Medicare insurance before age 65, and docs have used the specific Medicare codes to get things paid, up until I turned whatever the age was, instead of the code used for standard insurance.
does it matter which RSV shot I get?
RSV now for close to two months
Covid19 vaccine and CLL 
Evusheld and booster timing
Vaccinations newly diagnosed cll stage A
