CLL and Coronavirus Vaccine - symptoms

Hello,
I wish I had known about you 5 years ago!
My husband was diagnosed with CLL and is in remission. He had his Covid vaccination on Friday and by the evening he was already feeling rotten.
His symptoms have been:
Body aches, tight stomach, feeling cold, and headaches. His appetite hasn’t been the best either. Has anyone else had other symptoms that led to the requirement for medical attention? And what food helped whilst feeling unwell?
Thanks in advance :slightly_smiling_face:

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Hi @Tia . It sounds dreadful. I haven’t had any side effects from my vaccine but I should suggest going to his medical team for advice. I hope it all subsides soon. Let us know how it goes.

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Hi @Tia and @Franko, I also have CLL and I had my Pfizer vaccine on Friday and no side effects. I suggest as @Franko, says for him to check it out with his medical team, I know typically it is the weekend, or if he thinks then 111 is in order.
When I feel rotten it’s hot tinned custard with ice cream for me !!!

I am due to have my vaccine on February 10th. I asked my oncologist questions and here is his response. Thought this may be helpful.

Bradley A. Switzer, MD Date received:01/29/2021 06:23 PM

RE: NON-URGENT MEDICAL QUESTION

Message body:

Sorry for the delay, it is been a crazy couple of weeks and I am catching up on messages.

I like Z Dogg MD! He traditionally tries to offer a very fair and balanced presentation in his videos.

Yes, there is a risk of major complication somewhere around 1:50,000 for the COVID-19 vaccine.

The literature is still evolving for these vaccines. The original trials actually excluded cancer patients since they did not want to confound side effects from the cancer/treatment with side effects that could be from the vaccine.

The American Society of clinical oncology (ASCO) recommendations are for every cancer patient to be considered for this vaccine. Currently, there is no robust literature in patients with CLL but the consensus recommendations are to offer it anyway. The risk of major complication to catching Covid for someone over the age of 50 with an underlying malignancy (even when it does not require treatment such as CLL) is roughly 1:5. The risk of complication of the vaccine is 1:50,000 and several orders of magnitude smaller than the risk of complications to Covid itself. This is the justification for these recommendations until we are able to have clear data which is currently being collected.

In my humble opinion, I do not believe that this vaccine will have any significant increased risk in cancer patients compared to the general population. My suspicion is that since cancer patients often have a decreased immune system due to their cancer and/or chemotherapy it may not be as effective as a noncancer patients. For example, the Moderna and Pfizer vaccine have somewhere between 94 to 95% antibody production rate in the general population. It would not surprise me if in cancer patients this is somewhere around 75%. 75% efficacy is still better than 0%.

I hope this helps explain my thoughts for this. Our practice as well as the Dana-Farber Cancer Institute is to offer this vaccine to all of our cancer patients unless ultimately we find a certain subsection has a higher risk than others.

Respectfully

Dr. Switzer

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Thank you for your support and useful info from the Doc! It’s nice to hear a relevant opinion. My husband had the Astra-Zeneca vaccine, I wonder what the real immunity level is for vulnerable people?

Today is day 4 since the vaccine and I’m pleased to say my husband is feeling a lot better.
There are slight body aches and a tight stomach in symptoms left to manage. His arm feels very sore and unfortunately the children keep catching it. I hope this helps others in case they feel unwell after having their vaccine.

Thanks again :hugs:

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Hi @Tia, I am glad your husband is feeling a lot better and isn’t it typical that the children keep catching his sore arm.
Please keep us updated and how are you doing in the middle there?

I have Peripheral Neuropathy and in CLL remission for one year. Still feel unwell/tired for two weeks after the Pfizer vaccine. Also my balance and cooridination is affected. Concerned, as according to ZOE, side effects after the second jab are worse than first. Talked to my GP about taking second jab who said it was up to me . Fortunately appetite is not affected.

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Hi @Catcher, did your doctor say if anything can help your side effects?
I am extremely glad that your appetite is not affected though, you need to keep your strength up!!

Not much comment from my GP. Should have said I’m 85 so my GP sees my side-effects as age related and not something he can do anything about.

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You are just a mere youngster !!

When you ask about the real immunity for people with cancer, I would say, along with others, some immunity is better than no immunity. Our country, USA, is interesting. I live in Massachusetts and our governor has taken lots of precautions to keep us protected. You still have some people who do not want to comply to the mask mandate. In other parts of the country, including Florida, people are walking around without masks and not socially distancing. It really is a disservice to those like ourselves who have compromised immune systems. The vaccines are helpful, and we all have to try and do the best that we can to keep ourselves safe and get through this. I’m still working and doing telehealth with my clients. Some are upset that I will not see them in person. I have learned to put myself first and hope the rest of our CLL community are able to do the same. Sending a hug to all of you overseas!

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Hi @KMH sending you a hug back and I agree with what you say, yes, stay safe.

Resources in USA:

https://www.lls.org/webcasts
Blood Cancer Education Resources through the “Leukemia & Lymphoma Society”. I get their mailings. I did listen to one of their webcasts.

https://tongrenstation.com
These people helped me in the start of my journey in 2010 with CLL. I would describe them as energy workers. This may be of interest to some people.

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https://tongrenstation.com/location/leicester-england/

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I have Low Grade B cell Lymphoma, I am 70 & been diagnosed since 2017, have had Immunotherapy. I had my vaccine Astra Zeneca on Tues, by the evening every joint ached a lot, no pain at sight of jab but where I have a rotator cuff injury flared up. Next day bladder & groin ached ( I do have a mild hernia) & day after glands up one side & slight headache, but it seem to attack all my weak spots. But I was ok to carry on apart from spending the first day in bed.

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Good Morning @lubylu, the side effects you experienced seems so unpleasant and uncomfortable. Did you contact your GP or treatment team for any advice around what may help control your side effects so you wouldn’t be in so much pain and discomfort? How are feeling today?

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Hi @lubylu a great big welcome to our forum I am glad you have found it. Your side effects do sound nasty and my re-occurring shingles always goes for my weakest spots.
Perhaps if your symptoms persist this might be worth checking out with your medical team.
We are here to support each other and if you would like to talk to someone you can contact the wonderful Blood Cancer UK Support Services Team on 0808 2080 888 10am-7pm Monday-Friday and 10am to 1pm Saturday and Sunday or via email at support@bloodcancer.org.uk.
I look forward to hearing more from you.

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@lubylu Hi and I’m sorry you’re suffering these symptoms, upon reflection I notice that my husband also noticed his weak spots were more sensitive in the days after the vaccination. He felt like that for about 3 days then they eased off.

I hope the same has happened for you and you’ve started to feel better, otherwise I’d be tempted to get I touch with your medical team for guidance.

Take care

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Hi my name is Bob I’m glad your husband is feeling better I have my vaccinations few days ago go and the next day I did have tightness in my stomach but then I drank some ginger tea and it did seem to eat it so so maybe that would help god bless you thanks

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