Shingles vaccine update

[t2aa]

2 months ago I had the first of the two Shingrix vaccines and had a pretty awful reaction. Horrible arm soreness, blisters in my throat, throat swelling, fatigue so bad I really did not want to move.

GP told me to go ahead and get the second shot. Hemeo doc said get the second shot. CLL specialist said DON’T get the second shot.

Pharmacy calls to tell me the second dose is waiting for me and since I am now feeling better than I have in several weeks, I decided to go for it. Fear of shingles is strong!

Well, I am happy to report that other than a sore arm and very slight fever, I am having no sever side effects! What a relief! I am glad I did it!!

[Justasheet1]

Took some courage. Congrats 🎉

Jeff

[Ironj]

Can you have your CLL specialist call your oncologist to talk about why the specialist said no to the second shot all your Dr should be on the same page. There leaving it up to you on who to listen to. Again I would say they should all talk and give you the final decision on what’s in your best interest.

[Justasheet1 in reply to Ironj]

You just described Utopia. Certainly has never happened to me. I’ve asked but these Docs are way too busy. I’m perfectly comfortable making the final decision Ironj.

Jeff

[LovecuresCLL in reply to Justasheet1]

I am early on 11qATM 12,000 absolute monoclonal lumps. Unmutated. A month into this nightmare. I already had shingles from hell? Do I still need the shot

[Justasheet1 in reply to LovecuresCLL]

I guess it’s up to you and the doctor you get your advice from. I’m 11q unmutated and got every NON LIVE vaccine under the sun early on but Shingrex didn’t appear until a year and a half ago.

My doc said it may or not work for you but it can’t hurt. As you know well, shingles is bad 💩.

Jeff

[LovecuresCLL in reply to Justasheet1]

Thanks Jeff. Seeing Dr Mato tomorrow. If you have anything you want to ask him. Let me know. Just write me privately. I owe you buddy. - John

[Ironj in reply to LovecuresCLL]

Dr Mato is also my Specialist as well is a great man so is Hanna.

[LovecuresCLL in reply to Ironj]

Okay

[LovecuresCLL in reply to Justasheet1]

Nurse at MSK said get the shot.

[lexie in reply to Ironj]

Ironj I completely agree with your take on this. It forced the patient to accept a consensus by non CLL specialists over the CLL specialist. Why have a CLL expert in the first place if others encourage the patient to not heed the advice of a doctor knowledgeable specifically with CLL, especially going forward with a CLL diagnosis?

[Justasheet1 in reply to lexie]

Lexie,

That’s the exact reason to have an expert. You don’t know what you don’t know. The other docs simply don’t know but maybe neither did the expert. It’s one big guessing game.

Jeff

[t2aa in reply to lexie]

To be honest, when the CLL specialist said don’t do it, my neck nodes were quite large and any further swelling would have been a problem. However, since then my nodes have reduced in size significantly due to a short course of Prednisone 10 days ago, so that danger was no longer as big of an issue right at the moment of decision.

Plus, many many people on here have had the experience that the second shot was less eventful than the first. Wit that info, and the knowledge of the high percentage of CLL folks that get Shingles without the vaccine, i felt the risk of not getting it was higher than having another bad reaction. And even if I did have another bad reaction, being laid out for five days was better than months of Shingles! So I made my decision.

It was my decision to make. Docs give advice based on what they see in front of them that day. As we all know CLL symptoms can change rather quickly sometimes, especially the size of nodes. I think if he had seen me last Thursday, he would have agreed with my decision.

All that said, the conflicting advice was tough.

My next decision is tougher- GP and Hemo doc say to stay on W&W, CLL specialist want to start treatment next month! This time I am going with the specialist!

[Justasheet1 in reply to t2aa]

That’s certainly a switch. Perhaps the specialist has a clinical trial opening?

[LovecuresCLL in reply to t2aa]

What’s the treatment consists of?

[t2aa in reply to LovecuresCLL]

He wants to go with Venetoclax

[Justasheet1 in reply to t2aa]

First treatment? It’s pretty new to treatment naive. I’m sure it’ll work great for you.

[delseyn]

Glad the Shingrix worked out for you. I've had both shots and very glad I got it done.

[cajunjeff]

I have had both shingrix shots. I had arm soreness with both shots, no big deal.

I think you made the right call in going forward. I can see why your doctors had different suggestions. Allergic reactions are hard to predict.

Everything for us is about risk analysis. You had to balance the risk of having another allergic reaction with the risk of possibly getting shingles somewhere down the road. Sounds like you made the right call.

[Panz]

I am so proud of you for pushing thru and completing the Shingrix series. I have had Shingles and they lasted for 3 years and I really just wanted to die and I am not a wimp!!! I had watched my Mom suffer with Shingles for years and I sad I would do everything in my power to do what it took to avoid them. I even was so very stupid and I went to the health department and got the live virus Shingles Shot and was very lucky I had no reaction at all.....then several years later I got the Shingles....not a picnic as they lasted for 3 years. So when the new Shingrix came out I went immediately and got the first shot and was very lucky to get on and yes, like you both my husband and myself both had severe reactions lasting about six days. However, I got the second on two months later and no reaction at all. However, my husband couldn’t get his second shot for six months as it was just not available. When he finally did get the second shot he didn’t have any reaction at all!

I finally got rid of the Shingles when I started getting IVIG every 4 weeks. Now, they are not sure but they are researching the possibility that because of my compromised immune system I may need to get the series every 5 years like I do both of the pneumonia.

I fully understand there are specialists that may not be recommending Shingrix at this time but after having CLL for 30+ years I am truly my own advocate and I just don’t agreed with them as far I was concerned. I fully understand your fear of Shingles.

As I said I am so very proud of you!!!

🙏😍💕☘️

[Hidden]

If you have CLL why are you having a live vaccine? This is not recommended, Is your GP aware? There is a new vaccine that is not live.

[michaeledward in reply to Hidden]

The new shingrex vaccine does not have a live virus.

[KL2018]

I had the same experience. Bizarre! One shot knocked me off my feet, and my arm HURT. The other one, not so bad. It’s a mystery!

[michaeledward]

Congratulations. Good to know you didn't have any significant reaction to the 2nd shot. I had the 1st shot a couple months ago and like everyone else, I had sever arm pain. Additionally though, I also had a bout of despondency. The reason I attribute the despondent feeling to the shot is that this was the only time in my life I felt this "down". The despondent feeling lasted about 10 days. Has any one else had this type of reaction to the shingrex vaccine? On the other hand, on the same day and in the other arm, I also got a hep B vaccine, so I guess this reaction could be attributed to the hep B shot. I'll be returning to NIH in July to get the 2nd shot of these two vaccines. I hope like others my reactions to the 2nd shot(s) are also less severe.

[PSP52]

I had a strong reaction to the first shot. Headache, joints ached and fever of 101. Went away in 2 days. I am ready for the second shot in August. I spoke to my internist who is working closely with my oncologist. My internist said that the reaction showed that my immune system was working. Hmm. I am also due for the second pneumonia vaccine. We should be getting as many non live vaccines that we can but there are sure a lot we have to be aware of.

[Bill1288]

I just had my second Shingrix vaccine yesterday. My CLL specialist recommended it. So far just have a slightly sore arm.

Bill1288