Vaccines

[cmh55]

I just had an appointment with Dr. John Byrd(one of the top cll gurus). He recommended the Pfizer or Moderna vaccines as soon as they are available. I was also advised to call immediately if diagnosed with COVID-19 as they would arrange antibody( Regeneron or Eli Lilly) infusions.

[GMa27]

Dr. Byrd is awesome. Good to have him be positive about the vaccine. My local hematologist said to wait a bit. I will let her know what he said. He was my second opinion.

He told me not to get Shringrix. Recently he told a patient it doesn't work on us (testing finished) but can get it if someone wanted. Has he discussed it recently with you? Thanx!

[bbreeland in reply to GMa27]

I'd like to know why Dr Byrd doesn't recommend Shingrix- I asked about this also. Seems if it isn't harmful to us it's worth getting as it might provide some benefit

[GMa27 in reply to bbreeland]

He said testing showed it doesn't work. Many have gotten side effects from it.... My doc also said not to bother. Especially during covid. If i get any reaction, I can't ignore and assume it's from shot- I would have to get covid test. I will look into the test results. Would like a copy of the findings.

[KatieBlue in reply to GMa27]

If anyone has more info about the shingrix studies/testing, please tag me or message me with it. Thanks!

[GMa27 in reply to KatieBlue]

Me too!

[flisle in reply to KatieBlue]

Hi there, I took the first dose of shingrix vac. in Oct. 2019 while I was on Ibrutinib (140mg daily)and blood work had been really good since 2018 on this dosage. In Nov. & Dec. began having intermittent joint pain and swelling. Didn't think anything of it because that can be a side effect of the IB. Took my second dose first week of Jan. 2020. 2 weeks later horrible pain and swelling in my joints. Hands, elbows, wrist, feet ankles knees even legs. not all at the same time but right side would be in my hands and leftside might be my feet. Very seldom same places on both sides. I could actually see it happening. I would feel heat and tightening and then pain. Nothing and I mean nothing helped. I was in Kansas City working (home is OK) and got caught in shutdown. spoke to My CLL doc in OKC and he cut me back on Ib to 1 everyother day. Still had pain. somedays it would subside but had pain on a reg. basis. finally He stopped my IB at the end of April but pain still there. When I got back to OKC went thru battery of various blood tests and sonograms and MRIs. Showed nothing, negative for RA. took steroids that gave me relief as long as I was on them. Began seeing a Funtional Medicine Dr. He started me on LDN (low dose naltrexone ) it worked. Began a reboot paleo diet. In the mean time a read an article don't remember where about side effects from Shingrix. Time line and everything became clear. I spoke to my CLL doctor about the Shingrix and he agreed it was not the IB because pain should have stopped so it had to be the Shingrix. One year later still have flare ups generally caused from something I ate. But with watching my diet and the LDN 4.5mg I stay regarly pain free. But am convinced it was the Shingrix vaccine, so long story short, I am telling anybody don't take it. sorry this is long but wanted you to see the whole picture before you make your decision. I wish I had heard Dr. Byrd's opinion first, I would not have taken it. Not a fan of vaccines

[KatieBlue in reply to flisle]

I took my first dose of shingrix last December. Was supposed to have the second one in Feb, but also developed a kidney stone and the only time I could see a specialist about that was the same time as the appt for the second dose.

Was going to defer until a follow up appt in May with primary care. Then covid.

I did try to see about curbside, but later started to have misgivings about the second dose.

I did have a mild case of shingles about 5 years ago and my NP at the time said it would be rare to get it again.

[KatieBlue in reply to flisle]

So sorry about your experience with the shingrix vaccine. Glad LDN was helpful to you. I tried it or CLL dx for chronic pain, chronic fatigue, etc... and was not able to gain any benefit from it.

Best to you / stay well.

[flisle in reply to KatieBlue]

Thank you so far so good. I have been off of IB now for 7mo. and I am maintaining normal bloodwork. My oncologist said if he had seen this bloodwork he would not have even been able to diagnose CLL. Actually I haven't had this normal bloodwork results in 7 yrs. So I am very grateful. I am still alive and we all know the saying what doesn't kill you makes you stronger. But I have all the empathy for people who suffer from RA and Shingles. My oncologist also said I could "wait and see" about the covid vaccine. I fully intend to do that.

[KatieBlue in reply to flisle]

I’m not in a particular rush for the vaccine, and more so the mRNA versions. But I rarely volunteered for beta testing, either.

More data will be helpful and we’ll know more as they are rolled out...

[ivy39 in reply to KatieBlue]

Me as well. Thanks.

[cmh55 in reply to GMa27]

We didn’t discuss shingrix this visit, but didn’t recommend it previously when I inquired.

[newyork8 in reply to GMa27]

Byrd said no Shingrix or your local? I believe we should all get the Shingrix. No side effect for me. Shingrix can be extremely painful. I believe your MD is giving bad advice.

[GMa27 in reply to newyork8]

Dr. Byrd. My local said she agrees it's not worth the risk. But if I insisted, she would be ok with it. Since testing showed it does not work, I will not get it. One less shot to worry about.

[newyork8 in reply to GMa27]

There is no risk.

[GMa27 in reply to newyork8]

What I mean is some have horrible reactions to it. My GP didn't even want me to have senior flu dose ( I am 65). He said reactions to shots have been devastating to some of his patients. So many different opinions....gets frustrating. If I chose a different expert- I would not have had my uneventful chemo and be in remission now. 🤷

[newyork8 in reply to GMa27]

I have dealt with 3 world class experts...they don't always agree. But the advice not to take flu or shingrix is very surprising to me. so I guess they don't recommend Covid vaccine either? Its all about risk benefit. you can die from flu, go blind from shingrix. most people dont get bad side effects. or a day or so of feeling weak or injection site pain. The question are the vaccines effective for those with an immune system disease.

[GMa27 in reply to newyork8]

Flu shot was definitely recommended...just not the high dose for me this year. I am 65 and this would have been my first senior dose. I have gotten the flu shot every year since 1971- I had the Hong Kong flu back then. I was a teacher so I definitely needed all the protection I could get. Fortunately only had the flu maybe 3 times. Once after CLL diagnosis.

[newyork8 in reply to GMa27]

I would think you would want the highest dose with a weaker immune system...very confusing but a dead vaccine cant hurt you right? At least that is what I thought. I go for the strongest.

[msbypass4cll]

Dr, Byrd out me on Valcyclovar(sp?) as a better and more effective alternative to Shringrix. I don't know if that proactive prescription is just for my case and my particular profile/risk factors.

[newyork8 in reply to msbypass4cll]

so you are taking valcyclovir every day?

[KatieBlue in reply to newyork8]

I’m on Ibrutinib and was told after signing all the paperwork for treatment, almost as a afterthought, that I would need to take acyclovir and famotodine (2x a day for each) for the entire time I’m on Ibrutinib.

[newyork8 in reply to KatieBlue]

Wow...never heard that.

[KrisBren01 in reply to KatieBlue]

Hi Katie, I’m on ibrutinib and have to take Acyclovir x2 and co-trimoxazole x1 aday. Been on ibrutinib almost 6 years and Acyclovir and co-trimoxazole for 2.5 years.

[GMa27 in reply to msbypass4cll]

I was on acyclovir only during chemo and for an additional month after. Both Dr. Byrd and my local along with Dr. Pinilla at Moffitt said it's used during treatment. Which in my case was chemo.

I am guessing if it was an alternative to the Shringrix- wouldn't we all be on it?

This only applies to when you are not on treatment- so for those on daily pulls- it might be recommended to take.

[newyork8 in reply to GMa27]

The valcyclovir is used when neutrophils / t cells low from treatment because the zoster virus can reassert itself at that time. Shingrix is DEAD so it can't hurt you. Other top CLL docs advise it..I'm surprised Byrd does not. I had shingles...it is far worse than CLL in terms of pain. Also I have ongoing numbness and pain years after. Some go blind.

[GMa27 in reply to newyork8]

Unfortunately dead virus shots can produce reactions. Have no clue why, but they do. I know many who get sick after their flu shot. Nothing too unbearable but still can be scary. My friend got ill after her pn shot. See posts from some CLLers who got Shingles right after their shot. It is so random. Especially during covid I would be afraid to get something new. I would not be able to assume it's from the shot- so I would have to be tested.

I know Shingles can be so harsh on some. 💕

[newyork8 in reply to GMa27]

Shot reactions are an immune response..good. The actual disease is the greater risk. You cannot get Shingles from Shingrix...it is a coincidence.

[flisle in reply to newyork8]

Oh yes it can. Caused me pain and swelling in my joints for over a year. began intermittently after first dose and increased on a daily basis after 2nd dose. See my rather lengthy reply to Katieblue

[newyork8 in reply to flisle]

Sorry to hear. Are you over it I hope? I've had 2 years of shooting pain and numbness from actual Shingles.

[flisle in reply to newyork8]

Still have flare ups. It was the worst I have ever experienced. If I am careful not to eat or drink any thing that is inflammatory the LDN works. I think maybe my reaction was as if I had shingles from having that described to me but it was Shingrix vaccine. Redness, swelling and burning pain in a certain area. Flu and pneumonia didn't seem to bother me. I also was very sensitive to the Ibrutinib only could take the lowest dose possible but still reached remission in one year. Have been off of Ib now for 7 months and so far so good.

[newyork8 in reply to flisle]

Thats great...so you were on 140mg a day of Ibr?

[flisle in reply to newyork8]

Yes from the beginning tried full dosage after 10 days ended up in emergency room with horrible itching rash that was 2016, waited started ib again Jan. 2017 at 1 cap every other day then increase to 1 cap daily. By Jan 2018 bloodwork was normal. Stayed on it with blood levels normal until I stopped in April 2020. Still normal so far so good. I am very grateful. I also have the depletion 17P. Go back this thursday for another blood check. I feel grate considering.

[newyork8 in reply to flisle]

I think dose is based on weight. At 200 lbs I need 280 mg at least.

[flisle in reply to newyork8]

That makes sense no wonder couldn't tolerate full dosage because in the beginning I weighed about 135 lbs which was heavy for my frame & now I am 115 to 120 lbs. Now I am just back on WW until I show relapse then we are considering Acalabrutinib and maybe Venetaclax (sp). How are you doing on the IB?

[newyork8 in reply to flisle]

Doing great...reached uMRD ..side effects went away in 6 mos. I am 3 yrs on it. 420 mg. 11qdel. Miracle drug

[flisle in reply to newyork8]

Congrats! Yes in spite of the side effects it is a miracle Drug, we deleted people didn't have really anything that worked prior to the BTK inhibitors.

[newyork8 in reply to flisle]

Also may help with Covid as a bonus!

[GMa27 in reply to flisle]

That's exactly why I am not getting Shringrix. So sorry that happened to you. 🙏💕

[flisle in reply to GMa27]

Thank you I am thru the worst part. I plan on waiting to see how the covid vac. goes and my oncologist is okay with that.

[KateSned]

Love Dr. Byrd! Several places have a limited supply of the antibody - if you develop symptoms and get a positive test quickly (5 days) you may qualify. That was shared with me this week by my doctor in Indy.

[misterbee]

Great information! Are you currently on any CLL medications or are you W&W. I'm on a trial and not sure what my oncologist will say (they don't want "unknown" side effects)

[HikerBiker]

I'm in Boston - my CLL specialist has me on acyclovir instead of getting the Shingrix vaccine - she said it is better protection.

[prichman]

Are we assuming a single recommendation all classes of CLL patient? My oncologist is an upper tier consult and a colleague of Byrd on many studies. Years ago she advised me against the old Shingles vaccine and later recommended Shingdrix when it came out. At that point I had also entered remission. She strongly recommends keeping up on the flu vaccine. I know this to be the standard for many, especially since flu outcomes are worse with CLL. Each of us has to make a risk/benefit assessment. The risk for not taking a recommended vaccine is by definition always worse.

[misterbee]

Are you currently on treatment - Ibrutinib?

[Justasheet1]

Dr. Byrd is awesome!

[greygirl]

I`m in treatment right now. I guess you aren`t so you can get the vaccine, right?