A couple of days ago (Tuesday), the Lymphoma Research Foundation held a webinar on the Covid-19 vaccination and what it means for lymphoma patients. I wasn't able to listen in live, but I did listen to the recording of it. You can find it here.
And if you have questions about the vaccine, I hope you'll listen to the recording, which features two experts from Rutgers University, a epidemiologist and an oncologist. I'm going to go though some of the things I thought were important, but I want to emphasize this:
Whether you read what I say below, or listen to the recording, please remember: the best source for advice about any aspect of your cancer is your oncologist. Use the information from this webinar as a first step, not a last step. Use it to begin a conversation with your doctor, not as a substitute for that conversation. As one of the doctors in the webinar says, the information pertains to most cancer patients, but each of us has our own individual situation. Please keep that in mind.
The webinar opens up with information from Dr. Strom, the epidemiologist. He provides some basic information about Covid-19, and then gives some detail about what Rutgers has been doing related to Covid research, testing, and vaccine distribution. (He goes on for a little too long, in my opinion. If you want to move past the Rutgers information, skip ahead to about 14 minutes into the webinar.)
The second speaker is Dr. Evens, the oncologist. His focus is on how the Covid-19 vaccine might affect lymphoma patients. This is the information that most people really wanted to hear.
Dr. Evens begins by reminding us that the Covid virus is serious, and cancer patients in general are at higher risk for death and severe illness if they get Covid-19. To be clear -- that doesn't mean that they will get very sick, just that they (we) are at higher risk. That's based on statistics. Each of us would respond differently to testing positive for Covid.
I think we all know that, a full year into this pandemic, and I'm sure we've all been especially careful. It's important that we continue to be careful -- wearing masks, staying six feet (or two meters) away from others, and washing our hands often. Even if we do get the vaccine.
As for the vaccine, Dr. Evens gives some general guidance. This is a screen shot from the webinar, but I'll go through it all, too:
First, and most important: When you have the chance to get a Covid vaccine, get the vaccine. There doesn't seem to be any harm in getting the vaccine. It won't hurt you. Chances are very good it will help you. When you have the chance to get a Covid vaccine, then get the vaccine.
Even if you have been diagnosed with Covid, and you think that gives you some natural immunity, then get the vaccine. The vaccine will give you up to 50 times the antibodies that you would get from being diagnosed with Covid.
There are a few instances that need to be considered. Remember -- everyone's situation is different.
For example, patients who have a Stem Cell Transplant or have had CAR-T might do better to wait about 3 months after treatment has ended to get a vaccine. This is because treatments like these (and some very intensive chemo) mess with the immune system, and it can take 3 months to fully recover. The vaccine works by ramping up the immune system and training it to recognize the Covid virus. If the immune system isn't fully recovered from the treatment, the vaccine won't be effective. Once that 3 months is up, it's a good idea to get the Covid vaccine, according to Dr. Evers.
In the same way, Dr. Evers says, if a patient is going to begin treatment soon, it would be a good idea to get the vaccine before treatment, when the immune system is still strong and hasn't been weakened by the treatment.
If it's possible to delay treatment when you are considering getting a vaccine, that might be a good idea. Some of us can't delay -- the lymphoma is too aggressive. But others of us have an indolent, slow-growing lymphoma, one that might let us delay treatment. Same with maintenance treatments -- good for us, but not completely necessary. If it's possible, says Dr. Evens, delay a treatment until 2 weeks after you've gotten the final Covid vaccine (if the one you are getting requires two doses), so it is working to its full potential.
Some other important things to know:
- Seralogic tests -- the tests that show if the vaccine has given you a high level of antibodies after you have received it -- are not really reliable. If you have gotten the vaccine, and you are not dealing with one of the situations above, then you can assume you have a good level of antibodies.
- If you are in a clinical trial, get a vaccine anyway. The only exception might be a phase 1 trial, where safety of the new treatment hasn't been determined. But otherwise, get the vaccine.
- If you do get the vaccine, keep this in mind: about 16% of people who get the Pfizer or Moderna vaccine have swelling in their lymph nodes afterwards. This is a temporary immune system response, and the nodes should return to normal. So don't panic. But also know that you might not want to get a scan for 4-6 weeks, since it might show swollen nodes that aren't cancerous.
- The vaccine will probably not cause a sleeping lymphoma to wake up. (See above -- if your lymph nodes start to swell up, it's an immune response, not a lymphoma symptom.) On the other hand, there have been some reports of blood cancer patients whose cancer seems to get better after the vaccine. But those are still being investigated.
- The vaccine does not work differently for different lymphoma subtypes. In other words, it's effective whether you have Follicualr Lymphoma, DLBCL, or whatever.
- Is it safe for a cancer patient who has been vaccinated to visit with family? Yes, says Dr. Strom. You should follow the same guidelines as everyone else, and assume that the vaccine has worked well after 2 weeks. You can visit with other people who have also been vaccinated. You should stay away from sick people, and avoid crowds of people you don't know, since you don't know if they've been vaccinated. As long as you don't fit one of the situations above (like being actively treated with something that suppresses the immune system), there is no data that says the vaccine won't work effectively for you.
All that is good news, but let me emphasize two more things.
First, one important factor in all of this, according to Dr. Evers, is "patient wishes." If, after all of this, you're still not comfortable, then don't take the vaccine. But in my opinion (as a non-expert), there is no evidence that taking the vaccine will be harmful to you just because you are a cancer patient. You may have some other health issues to consider, but cancer isn't one of them. The vaccine should be as safe and effective for you as for anyone else. "Patient wishes" involves your post-vaccine life, too. If you are not comfortable being around others, even those that you know have been vaccinated, then stay away from them. You have to consider your own comfort. We're all going to have to deal with "getting back to normal" in our own way.
Second, I'll end the way I began -- these are general guidelines about how the Covid vaccine affects lymphoma patients. Each of us should talk to our oncologist about our situation. Use what you learn in the webinar to start that converation -- "I heard in a LRF webinar that people who are on maintenance should deal with the vaccine by doing X. Is that true?" If you trust your oncoogist about other things, trust her answer on this question, too.
One last thing: I have had my first dose of the vaccine. I've been lucky enough that I was eligible, and that they were available, where I live. I know that's not true for everyone, and I hope that, wherever you live, you'll be able to get one soon, if you haven't gotten one yet. I'm glad I did it, because everything I have read says the chances that it will hep me are far greater than the chances that it could hurt me in some way. This webinar just confirmed that.
I hope this all helps, and I hope you have that conversation with your oncologist, and that, when it's available and appropriate, you get the vaccine.
Stay well, everyone.
3 comments:
Thank you so much for this very informative post, Bob. Thank you for all you write. Not only helpful, but comforting. And, since I'm traveling from NY to LA this week, it was especially helpful and comforting to me! Very grateful to have you there.
LYMPHO BOB:
Your blog content has brought comfort to me. I had a tough week. My recent PET scan showed progression of follicular non hodgkin's lymphoma after 7 months off treatment: bendeca and rituximab. Since last Thursday I have been spending hours into the night reviewing survival statistics, which scare the living daylights out of me. Your blog on median survival rates shed light on reading these studies proper context-meaning we are individuals, not aggregate statistical numbers.
I am 65 years old and have been in at least partial remission but have relapsed after R-Chop for 4 months, and then bendeca and rituximab. Next Monday I will begin a monthly regimen of revlimid and gazyva. I feel like an 18 year old, active, even riding a motorcycle again. So I will try to stop ruminating about aggregate survival studies that may not pertain to me.
--Don Castle
Phoenix Arizona
Ho Frances and Don.
Sorry it's taken so long to respond.
Frances, I'm glad the information helped. I hope your trip to LA went well. I'm looking forward to traveling sometime soon (I hope).
Don, thanks for writing. I'm glad the survival statistics info helped. I try to stay away from numbers like that, because I end up having the same reaction to you -- they just upset me if I let my thoughts get away from me. Sorry to hear about the B-R not working for you, but I'm happy to hear you have a plan in place with the Revlimid and Gazyva. It sounds like a smart choice -- lots of success with Rev + Rituxan, so maybe switching to gazyva will hit things a little differently. And I'm glad you're feeling 18 again (I'm jealous). Keep enjoying the motorcycle, and don't let worries about what -might-be get in the way of doing what you love.
Sorry again about taking long to respond. Take care, everyone.
Bob
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