1. < Blood Cancers & Disorders

Should Waldentrom's Patients Get Flu Shots?

Posted by mike02041950 @mike02041950, Sep 1, 2023

I had a bone marrow biopsy back in February and was diagnosed with Waldenstrom's. I'm still learning about my cancer and wonder if I should get a flu shot this year. Also, should I get the Covid booster that will be out this fall?

Since WM produces bogus white blood cells that crowd out the good white blood cells that provide immunity, will the shots cause my immune system to produce IgM at an increased rate? Will the shots only speed up the proliferation of IgM rather than build up my immune system?

Thanks in advance.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Mentor
Lori, Volunteer Mentor | @loribmt | Sep 4, 2023
In reply to @mike02041950 "Hello 1oldsoul and thanks for the response. You asked about the determining factor from my biopsy..." + (show)
@mike02041950

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.

Jump to this post

Hi Mike, Contacting Mayo Clinic is easy. Here’s a link to get you started. It will take you to the Mayo Home page where you can follow the cues to request an appointment.

http://mayocl.in/1mtmR63

Mayo Clinic specializes in difficult cases. Their collaborative approach to medicine means that you, with your WM, would not be limited to a hematologist. If you have lung concerns there would be a lung specialist added to your team, etc.. I had a bone marrow transplant and had a fabulous team. But a few complications with my health had 2 neurologists, an allergist, ophthalmologist and liver specialists added to my team. No chest thumping between them! They all worked together to find solutions to restore me to full function. I’m 4 years out and feeling like nothing ever happened. So I may be a little biased but I owe my life to the amazing medical teams at Mayo-Rochester.

So I encourage you to follow through with a request for an appointment. You’ll have the option of choosing Rochester, Jacksonville or Phoenix. Do you live close to any of those cities?

REPLY
mike02041950 | @mike02041950 | Sep 4, 2023

Thanks for the link Lori. Rochester is closest even if it's over 400 miles away. Great opportunity to use all those points I've been accumulating for travel on my credit card. By chance, can you recommend accommodations in Rochester? I won't have a car if I fly, so I need to be close to the hospital.

REPLY
1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Sep 4, 2023
In reply to @mike02041950 "Thanks for the link Lori. Rochester is closest even if it's over 400 miles away. Great..." + (show)
@mike02041950

Thanks for the link Lori. Rochester is closest even if it's over 400 miles away. Great opportunity to use all those points I've been accumulating for travel on my credit card. By chance, can you recommend accommodations in Rochester? I won't have a car if I fly, so I need to be close to the hospital.

Jump to this post

Hi Mike. Rochester is my home away from home…many months living there for my bone marrow transplant and lots of followups. Most everything you need is within walking distance to Mayo…it’s in the center of the city with quite a few hotels, stores and restaurants connected by the Subway, which is an underground tunnel system. It’s excellent!

Here are some links to accommodations from many of our members… (you can reverse the order from Oldest to Newest with the little oval under the opening paragraph in the lower right corner so you get to the most current comments).

Lodging for Mayo Clinic, Rochester
https://connect.mayoclinic.org/discussion/lodging-for-mayo-clinic-rochester-mn/
~~~~

Rochester Mayo Clinic Concierge Services
— https://www.mayoclinic.org/patient-visitor-guide/minnesota/becoming-a-patient/concierge-travel-services

Map of downtown Rochester Accomodations:
— http://318commons.com/main/wp-content/uploads/2015/03/Dowtown-subway-and-skyway-map.pdf

These will get you started. Don’t hesitate to ask if you have any more questions! To make sure I see your comment please tag me with @loribmt so I get a notification. ☺️

Good luck with your appointment request. You don’t need a referral but I’ve heard it can be helpful. Let me know what you find out, ok?

REPLY
1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Sep 5, 2023
In reply to @loribmt "Hi Mike. Rochester is my home away from home…many months living there for my bone marrow..." + (show)
@loribmt

Hi Mike. Rochester is my home away from home…many months living there for my bone marrow transplant and lots of followups. Most everything you need is within walking distance to Mayo…it’s in the center of the city with quite a few hotels, stores and restaurants connected by the Subway, which is an underground tunnel system. It’s excellent!

Here are some links to accommodations from many of our members… (you can reverse the order from Oldest to Newest with the little oval under the opening paragraph in the lower right corner so you get to the most current comments).

Lodging for Mayo Clinic, Rochester
https://connect.mayoclinic.org/discussion/lodging-for-mayo-clinic-rochester-mn/
~~~~

Rochester Mayo Clinic Concierge Services
— https://www.mayoclinic.org/patient-visitor-guide/minnesota/becoming-a-patient/concierge-travel-services

Map of downtown Rochester Accomodations:
— http://318commons.com/main/wp-content/uploads/2015/03/Dowtown-subway-and-skyway-map.pdf

These will get you started. Don’t hesitate to ask if you have any more questions! To make sure I see your comment please tag me with @loribmt so I get a notification. ☺️

Good luck with your appointment request. You don’t need a referral but I’ve heard it can be helpful. Let me know what you find out, ok?

Jump to this post

@mike02041950, Here’s another link that might be of interest to you. It’s a a current discussion for lodging in Rochester.

https://connect.mayoclinic.org/discussion/closest-best-hotel-for-one-night-stay/
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