Should Waldentrom's Patients Get Flu Shots?

As a long term myeloma patient, I’ve been told to always get all the vaccinations available, especially flu and Covid. After each transplant I was give all my childhood vaccines again.
I certainly don’t understand all the workings of our blood cells, but I have this idea that the clones are stupid, and don’t do the good job that our normal white cells do.

Thank you for asking. I have been wondering the same thing. I was diagnosed 1-1/2 years ago and feel good, but unexpectedly just started chemo due to a few lab numbers, including hemoglobin, dropping quickly. I hope to get the covid and flu shots in the fall, but will certainly check with my doctor. Any info is welcome.

Hello @mike02041950 @barbdk @lesliemont. Because WM is a type of blood cancer where your bone marrow produces too many abnormal white blood cells, that puts you in a higher risk for infections and diseases. The white blood cells are key figures in the immune system so when they’re defective that leaves you immunocompromised. The best defense is to go on the offense and grab those all important vaccinations such as the annual flu shot and the latest Covid booster vaccination (that one hasn’t been released yet and is due later this fall).

Here are a couple of articles which help explain why it’s a good idea and why our blood cancers put us at a higher risk.
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https://www.cancer.net/blog/2023-08/should-people-with-cancer-and-cancer-survivors-get-flu-vaccine
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A little information from the Mayo website on WM:
https://www.mayoclinic.org/diseases-conditions/waldenstrom-macroglobulinemia/symptoms-causes/syc-20359967

Of course, it’s always a good idea to check with your oncologists to see if they recommend the vaccine for your personal care. Each of us is different but all of my doctors are on board with the added protection the shots offer.
@mike02041950 you wondered if a flu shot would skew your blood numbers. That would be a good question for your doctor.

Have you all received vaccinations in the past?

Thank you. All good information. I will discuss with my oncologist and plan to get the shots.
Leslie Fox

Thanks Lori.

Yes, I have received two shots and the booster a couple of years ago, but my IgM levels were much lower at that time. They started monitoring my IgM levels in 2018 when they recorded levels in the 300 range. At the time, they were simply monitoring the slow proliferation and calling it MGUS. Last year in 2022 I began experiencing fatigue, weakness, shortness of breath and weight loss, so they did a bone marrow biopsy and determined that I have WM.

I have to wonder if the covid shots and flu shots I had during that time turned my MGUS into WM, or caused my IgM levels to be sped up. My last blood draw done back in July revealed that my IgM levels have increased to 647.

I know my levels are still low relative to so many others, but I have to wonder if the vaccines have contributed to the IgM proliferation in my case. Hence my question about skewing my blood numbers.

Hi Mike, I can appreciate your thoughts on whether the vaccinations had anything to do with the change IgM levels. However, if your numbers were elevating prior the vaccinations, basically the ball was already rolling on the changes with the plasma cell production. So it might be difficult to know if the shots had an impact and you may never know for sure. Either way, from my experience with blood conditions the end result would eventually have been the same with the proliferation. So correlation doesn’t imply causation.

A little information on M-protein
https://www.healthline.com/health/m-protein

We have a number of ongoing discussions in the forum with members who also have WM. If you haven’t already this discussion, Waldenström's Macroglobulinemia, would be a good place meet other members like @squidlee @catalinae @champ9810 @ejrquast and more who have WM.
https://connect.mayoclinic.org/discussion/waldenstrms-macroglobulinemia/
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The I.W.M.F. (International Waldenstrom’s Macroglobulinemia Foundation) would also be a great source of information for you with your newer diagnosis of WM.

Back to your flu shot…Influenza vaccinations, covid boosters, and any other vaccinations induce a protective memory immune response in the B Cells. Any vaccination that you get can trigger an immune response. That’s the goal because it then signals the body to make antibodies. So if you’re exposed to those viruses or bacteria, your immune system will have gotten a jumpstart in recognizing the invaders and can launch an attack sooner. It doesn’t guarantee a person won’t still get ill but generally the infection would be less severe. That’s why important for anyone with a blood cancer or blood condition to have a flu shot or Covid vaccination to help give the body a fighting chance by bolstering the immune system because we already have a weaker immune response to illness.

I think if your doctor gives you the go ahead that it’s something you should consider. The protection offered can be vital to continued good health.

Hi Mike, I have IGM MGUS (high IGM and low IGA and IGG) diagnosed in 2021. I am 69 years old and my IGM was also in the 300 range in 2021 and is now 543. Do you know what the determining factor was from the bone biopsy for the change in diagnosis to Waldenstrom’s? My hematologist told me that if my MGUS ever progressed it would most likely progress to Waldenstrom’s. I also began experiencing fatigue, weakness and shortness of breath this year and although my hematologist feels that a bone marrow biopsy is not necessary due to my IGM not being extremely high he said he would order one at my next visit if I wanted one. He thought my other lab work did not indicate a reason for my symptoms. Did you have other factors in your blood work indicating a possible anemia? If you are like most of us, developing chronic fatigue and weakness can be worrisome because it affects every aspect of our life. Has your doctor mentioned a treatment plan going forward? As to your question about vaccinations, I asked my hematologist about the Covid vaccine back in 2021 as I had not taken one and he stated that it would not be effective due to the high IGM and low IGA/IGG. I asked him if I were more at risk of becoming ill by being out in public than most people and he stated no. So I have opted not to take any vaccines although I am retired and not out in public very much except to go to the store or doctor appointments. I practice what my GP once told me- and that is to never touch my eyes, nose or mouth unless I have just washed my hands and that advice has served me well. If you would prefer to connect with me privately please let me know and I can provide my email address. Thank you and may God keep you under his protective wings.

Hello 1oldsoul and thanks for the response. You asked about the determining factor from my biopsy that changed my diagnosis. I have copied and pasted that factor from my Va medical records below.

"MYD88 p.L252P was identified.
This finding supports the diagnosis of lymphoplasmacytic lymphoma / Waldenstrom macroglobulinemia."

My blood work does not indicate anemia, but all of my relevant immune system metrics are borderline low. They are not recommending treatment of any kind at this time due to my severe COPD. According to the VA docs treatment may harm and even be fatal. They've been very unclear as to any future treatment and are waiting and watching.

I requested that VA pay for a second opinion at the Rochester Mayo clinic (I am a veteran), but my request was turned down. I don't think VA has experts who specialize in WM due to the relative rarity of WM even though they may treat it occasionally.

Your post indictes that we may be at the same stage for WM. If you choose to have a biopsy. It may be that yor doctor will recommend 'watch and wait' for you as well. My goal now is to find a doctor who has experience treating WM patients who also have COPD. I think I have a better chance by going to Mayo where they treat hundreds of patients every year. I just don't know how to go about contacting Mayo.

Once again, thanks for the reply, and please stay in touch.

Thank you for the informative reply, Lori.
As a WMer, I personally experienced an increase in my IgM after vaccines but they went back down later. I also experienced greatly increased PN after a couple of vaccines, which also eventually improved.

Hi, I have had Waldenstroms for 19 years and have always had flu shots. I was advised never to have a live virus shot of any kind. Best advice would be to ask your oncologist. Be well