cll and the moderna vaccine

[BART4]

Today I was supposed to be vaccinated with astrazeneca, but the doctor who conducted the pre-vaccination examination changed my vaccine to moderna, because he said that people with chronic lymphocytic leukemia should be vaccinated with moderna's product. Were any of you vaccinated with a moderna product? do you have any side effects? maybe some of you have had two doses of the modern vaccine. thank you for every answer Greetings from Poland

[WinJ3]

I had both moderna vaccines and had 0 side effects.

[Panz]

I had the two Moderna injections and no side effects with either one. I was told on the second injection I could expect a 50% chance of reaction but I had nothing. Now my husband had the same at the same time and place I did and he had no reaction to the first injection but did have 24 hours of reaction with the second injection and he has no health issues at all.

Happy Easter to you! Panz 🙏💕🙂☘️🐣🐰🐥💐

[Sheilachalfie in reply to Panz]

I had the Moderna vaccine with no issues. Since I was told the 2Nd shot could be different , I took Tylenol before and immediately after the 2Nd shot. Other than tiredness, I was absolutely fine!

[catnapcrew in reply to Sheilachalfie]

That’s a good tip 👍 think I’ll try that for 2nd shot as headache after first was a cracker

[Green790 in reply to catnapcrew]

We were told no pain reliever before shot and only after if you have symptoms.

[catnapcrew in reply to Green790]

Thanks for that. Will discuss at next months specialist appointment.

[DRM18]

I've gotten only the first Moderna dose so far; my arm hurt quite badly for around 48 hours; I also think my lymph nodes swelled up a bit for a couple days, sure felt like it at least (but didn't look like it), but that might have been paranoia lol ...

[Pacificview]

Well, first shot Moderna no reaction. 1 month later 2nd shot injected at 5:30pm woke up next morning with achey body like the flu, some chills and felt like i had a fever but did not. No other normal flu symptoms like stomach, cough and runny nose. Injection location swelled up quite a bit and was sore. That soreness even dropped down to my arm pit at day two. In total side effects lasted 3 days with full side effects. Then suddenly the 4th morning I awoke to symptoms dissapearing quite noticeably so.!

Dr. at Duke agreed its a good indicator of my body having a strong immune response....

Lots of good info out there for the durability of that vaccine.

Bkoffman is correct, "lack of a reaction does not mean lack of immunity "

[bkoffman CLL CURE Hero in reply to Pacificview]

Important to note lack of reaction does not mean lack of immunity.

[Panz in reply to bkoffman]

Thank you Brian, I had no reactions what so ever and had my antibodies tested last Thursday and am currently waiting for the results. It is what it is what ever it is as I live a very isolated and happy life! Happy Easter! 🐣🐰🐥

[naddude in reply to bkoffman]

Hi Brian: are you aware of any problems with the AZ vaccine regarding CLL patents and such as myself: on iBritinb for over 3 years with platlets ranging from 130-160 and all other numbers normal ranges? Thanks! Chag Sameach!

[bkoffman CLL CURE Hero in reply to naddude]

No data in COVID, but we have data on lack of response to Hepatitis B vaccine for those on ibrutinib on our website from a study by Dr. Pleyer. Studies are rolling out

[naddude in reply to bkoffman]

Hi. OK> But concerned about any dangers in obtaining the Astra Zenica vaccine in situations of CLL remission, ibrutinib with slightly lower platelets given that the dangerous blood clot reactions have occurred in people with low platelets?

[bkoffman CLL CURE Hero in reply to naddude]

I am more worried about COVID

[naddude in reply to bkoffman]

OK. Thank you. Just wondering about the science regarding platelets and clotting. sciencemag.org/news/2021/03...

[ironjohn in reply to bkoffman]

Hello Brian

Is it better to get the vaccine or the Antibody infusion ? I keep hearing the vaccine is about 25% effective against the virus. And in a lot of cases I hear the vaccine is showing no antibodies.

Thank you

John

[Mldeterm]

Husband had both and had no issues. Good luck!

[CoCoLuna11]

I’ve had my first Moderna vaccine. Had a pretty sore arm for a couple days. About a week and a half later started to itch at vaccine site and now 16 days later I have a pink ring surrounding injection site, doesn’t hurt or itch anymore. “Covid arm”, I guess. Not sure what round 2 will bring 😬

[Ginajetta in reply to CoCoLuna11]

I had similar reaction. Finally third week after first shot redness and pain gone.

[Whiterockbc]

I had both shots of Moderna. 1st shot I just had a sore arm. 2 nd shot I woke up the next morning with chills and later I had a very high fever. I went to bed and woke the next morning all better.

[MovingForward4423]

There is no data on CLL and the type of vaccine to use. I spoke to the UK leading expert and they are sharing data with the USA. The biggest concern for people with CLL is currently only 13% of vaccinated individuals have an antibody response. That is very low and very concerning. What they don't know is the T-Cell response. Birmingham University is currently running trials to gain further insight into Vaccines and individuals with blood cancers. They need more data to understand who is responding and why, and why a large percentage are not. cllsupport.org.uk/effective...

[mbear in reply to MovingForward4423]

I am in UK and signed up for Birmingham Study. Hopefully this will provide some answers to CLL community.

[Bks1 in reply to mbear]

Hi, glad you are on the Birmingham study. I sent them an email as advised on c.l.l.website quite some time ago and havent had a reply? Just wondered how you got on it.

[mbear in reply to Bks1]

Well like you I heard nothing for a few weeks but out of the blue a doctor phoned me. Went through a few questions and explained how bloods would be obtained. Awaiting consent forms which he said would be sent out. Then take it from there.

[Bks1 in reply to mbear]

Thankyou,that's helpful. Hope it goes well for you.

[mbear in reply to Bks1]

Thanks. Hopefully these studies will provide answers we're all looking for.

[MovingForward4423 in reply to Bks1]

I just emailed them. [e-mail]

[Bks1 in reply to MovingForward4423]

Great, yes same email address I used. Hope you get a response.

[Bks1 in reply to Bks1]

Have just had my phone appointment with the haematologist. I am on ibrutinib and in the fortunate position of normal bloods. We discussed the Astra Zeneca vaccine and he was of the opinion it would work pretty well on me as my immune system is not very compromised at present. Hope this is reassuring, it was to me!

[bkoffman CLL CURE Hero in reply to MovingForward4423]

I believe the 13% was the response seen after 1 dose of Pfizer in all blood cancer patients. Might be better after 2nd dose. Or not. Might be better with Moderna. Or not. Moderna is better in solid organ transplant patients who are also immunosuppressed, but it's different. More drugs suppressing immunity.

[ChristyAnne_UK]

I have CLL and had the Oxford Astra Zeneca jab. Why should CLLers have the Moderna vaccine in preference to others? Other than for political reasons?

[CguLLer in reply to ChristyAnne_UK]

I did wonder this and was waiting to see if Bart gave any more information as to why his Dr said this. I’ve not seen anything to say at this stage if one vaccine is better than another for those of us with CLL. That fact is no-one knows yet and it will be a while until the various studies currently underway may give an answer. As we know many of us, particularly in the UK, have had the Oxford/AZ one. I did wonder if this Dr incorrectly thought AZ was a live vaccine? Some others on here have said their Drs in other countries have made this error

[ChristyAnne_UK in reply to CguLLer]

Thank you for acknowledging me. I’m afraid my suspicions are that the reasons are not practical or scientific, but driven either by commercial considerations (Big Pharma), or national politics. That is just my opinion, though.

[Hidden]

That was a quack, not a doctor.

[Dahlia7]

I had 2 Moderna vaccinations and only a sore arm after each.

[newyork8]

1st Moderna: sore injection site 3 days. 2nd shot: light flu like symptoms for 2 days with onset at about 30 hours. Now Pfizer showing great efficacy which is same technology as Moderna...mrna. I believe the efficacy may be better than Astra. Why switch vaccines when the double dose of PFE or MRNA has amazing results? Whether a 3rd one makes sense is unclear but I would want at least 2 doses of the same one as that has been proven to be very effective and may work against UK and Brazil strains, etc. A few Pierogis wouldn't hurt either so please send some my way to Miami!

[nodramahere]

I have had CLL for 9 years. No treatment but on watch and wait.I've had both Moderna shots.

Just a sore arm and a few hours of chills with second injection.

But most importantly I followed up one month after second injection with the antibodies test. Results showed that the vaccine worked and I have antibodies against COVID-19. It's important if you are getting treatment to discuss with your doctor getting off treatment for a period of time before you take the vaccine. Good luck...

[catnapcrew in reply to nodramahere]

That’s awesome news! I’ve had first AZ shot. I’m on ibrutinib- specialist said keep taking it.

[Mogal]

Yes, I have been vaccinated with both doses of Moderna vaccine and had no side effects except for mildly sore arm at injection site. My husband also got the vaccine without any side effects.

[CLLCalifornia-USA]

Hi Bart,I had the Moderna vaccine in January and February with no side effects. Maybe a little more tired on day two. I took a long nap and I am not one who usually naps. I’m unmutated and Trisomy 12. I’m praying it works. Good luck. Sally

[skunkbay53]

We both got Moderna and the day after our second shot my husband who has CLL woke up with a 101.4 temp...I was fine till the afternoon then my temp went to 101. We both had a mild Headache and mild body aches. We really didnt feel sick so we just hung out watching Netflix. We were fine the next day

[ChattahoocheeBoy]

Hi....recently diagnosed with CLL and have had both Moderna injections with no known side effects during the 2 months following the vaccine.

[onu1tadi2]

Did he explain why?

[tahoegal]

Hi Bart. I recently had the first dose of Moderna and had a sore arm and flu like symptoms the next day. Felt good day two, then day three felt fatigue. Best wishes

[Placidlp]

I’m in USA. I had both Moderna with only very sore arm. I was able to participate in a study at UAB to see the effectiveness of the vaccine in people with CLL. Mine came back with positive results-I have good antibodies to Covid. Happy Dance!

[catnapcrew in reply to Placidlp]

Oh yeah for you 🥂

[Samm22]

I had both Moderna vaccines and very little side effects. Just got tested for antibody response and results came back positive.

[Dghb]

I’ve had both doses of the maderna! Fist shot didn’t bother me a bit, however the second shot mad me feel tired,achy,temp 102, and a headache for about 24 hours. When it left, it totally left. No other problems .... fear not... it wasn’t that bad!

[Feldman]

Samm22 good for you!! What test did you have to check for antibodies? I had both doses of moderna vaccines with no side effects and am curious if it worked for me. I’m on imbruvaca. I hope it works for you Bart 4 and for all of us with CLL. 🙏🏻🤞🏻

[Samm22 in reply to Feldman]

Specialist ordered SARS CoV Antibody IgG test which detects antibodies to COVID spike protein. There may be better tests out there that are more quantitative.

[Phil4-13]

Bart, after the first Moderna, I had a serious looking rash on my injection arm. Hot, hot and hard and sore to the touch, about 3” by 7” long. Treated with topical cortisone. After the 2nd, 18 hours after the 2nd, I had for 11 hours, great muscle and bone pain from the top of my head to the soles of my feet. Treated with rest and ibuprofen. My haematologist thinks my CLL may have impacted the 2nd shot reaction. I was fatigued and somewhat achy for another 2 weeks. My doctor did blood tests(2 months since my last) to confirm my CLL had not worsen. It hadn’t! Thank goodness! I will take another vaccine as directed and remind myself, side effects are possible and they do go away!Sandra😊

[Rpshe1]

I had Moderna vaccine no side effects from first shot other than sore arm. Second shot yesterday, today mild headache, enlarged lynph nodes under the chin, mild body aches & overall sluggish feeling. Hope to have the antibody test in a month or so.

[Pin57]

I was told by my CLL specialist to get the first type available in USA n that all 3 are “good”. ... Moderna Pfizer n J&J.

A J&J slot came up first, so I got that one-n-done shot. Hope I didn’t screw up n should have waited n taken Moderna? ... or Pfizer ?

No side affects for me from J&J besides a one day sore arm, but that’s normal with flu shots I’ve gotten before.

There’s talk of future booster vaccine shots for battling the variants, we shall see I guess.

From what I read n the replies here, seems to be not a whole lot of data on CLL n the current vaccines against covid.

[Newchallnge]

Hello, I got my 2nd moderna vax and had a slight fever, felt weak and chills the day after the jab and then all gone. I was happy that my body and immune system responded. injection site swollen and hurt both times. A few days of discomfort was well worth it for me.

[Korstiaan]

Thanks for raising this question, Bart. Very interesting to read all the replies. My first (Moderna) vaccination is planned next Sunday.

[sugar03]

I have had both moderna vaccines and the booster. No bad side effects, just a sore arm and some fatigue. I have fatigue anyway so it might not have been from the vaccine.