Anyone Else with Waldenstrom's and COPD?

Posted by mike02041950 @mike02041950, Aug 2, 2023

I was diagnosed in February with Waldenstrom's. Here's my blood work just before the bone marrow biopsy. My IgM count last month was 634.

CBC DATA:
Test name Result units Ref. range
WBC 5.57 K/cmm 3.6 - 11.2
RBC 4.25 M/ul 4.10 - 5.70
HGB 14.0 g/dL 13.1 - 16.8
HCT 41.1 % 38.2 - 48.4
MCV 96.7 fl 80.0 - 100.0
MCH 32.9 pg 27.0 - 34.0
MCHC 34.1 g/dL 33.0 - 36.0
RDW 12.6 % 11.8 - 15.1
PLATELET COUNT 151 K/cmm 150 - 400
MPV 9.6 fl 7.5 - 11.2

The VA has been monitoring my IgM proteins since 2018 and called it MGUS. I did not experience symptoms until 2022 when I lost 40 lbs over the year and experienced extreme fatigue, and increased shortness of breath during this time. They then did a biopsy and determined that I had Waldenstroms.

They are choosing not to treat the Waldenstroms at this time and attribute the weight loss, fatigue and shortness of breath to my COPD.

Anyone else with COPD & Waldenstroms? Are there any other tests they can do to determine if my symptoms are due to COPD? Or are they due to Waldenstroms?

Thanks

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marshanp | @marshanp | Aug 3, 2023

Seek eval from pulmonologist and/or WM specialist. I am established at Bings Center at Dana Farber.

mike02041950 | @mike02041950 | Aug 3, 2023

In reply to @marshanp "Seek eval from pulmonologist and/or WM specialist. I am established at Bings Center at Dana Farber." + (show)

Are you a WM specialist AND Pulmonolgist? If so, how can I find out more about you? Thanks.

marshanp | @marshanp | Aug 3, 2023

sorry for how my reponse reads. I am a patient at DF

badnewsforme | @badnewsforme | Aug 9, 2023

I have both and each problem can have similar side effects. I’m not a Dr this is my own opinion. If you have COPD i would recommend getting a CPAP machine and start using it. If you are suffering from sleep deprivation it plays hell on your health. Just as important (again my opinion) find a hematologist for a treatment work up. I’m a vet but choose to treat issues like Waldenstrom outside the VA (again just my choice).
Best of luck going forward.

mike02041950 | @mike02041950 | Aug 10, 2023

In reply to @badnewsforme "I have both and each problem can have similar side effects. I’m not a Dr this..." + (show)

Thanks for taking time to reply to my post badnewsforme. I agree that VA may not be up to speed on on something serious. It really is luck of the draw for VA providers and I doubt VA is focused on something as rare as WM. I'm told that a research hospital would be my best bet. Although I'm close to the Kansas University Medical Center, it appears that Mayo in Rochester would be my best bet. The VA oncologist I see says that VA will not pay for treatment at Mayo. Barring that, I wonder if it's possible for Mayo to manage my care through my local VA?

badnewsforme | @badnewsforme | Aug 10, 2023

Mike, I made the assumption you were on Medicare like I am. All treatments I received at Mayo were covered by Medicare but that doesn’t do you any good if you’re not.
I’m not positive but the VA does allow outside treatment if they don’t provide the service or they are overbooked. I would certainly look into it. I believe VA has patient advocates that might help you navigate the system. You are looking for a Waldenstrom specialist not just a medical oncologist.
Best of luck. Never give up keep on fighting.

mike02041950 | @mike02041950 | Aug 12, 2023

In reply to @badnewsforme "Mike, I made the assumption you were on Medicare like I am. All treatments I received..." + (show)

Thanks for the input. I do have Medicare along with the Aetna Direct I signed up for after my retirement from the federal government. Pretty good coverage. Neither my wife nor I have had a medical bill since my retirement in 2017.

I think I will contact the PA at my local VA to inquire further about VA footing the bill. While my VA oncologist seems to know something about Waldenstrom's, she is certainly not a WM expert or a hematologist/pulmo doc. A case might be made here.

As a former Marine, I will never give in and never, ever give up. Thanks.

drwill | @drwill | Aug 13, 2023

Hi Mike.

I went to MD Anderson and there I was diagnosed with WM. I received a treatment plan through Dr. Ye, and she recommended me to UT Dallas, a medical school, where I receive my treatments.

I’m not a veterinarian, so I can’t answer the question if the V will pay for the MD Anderson visits, but you can get your treatments somewhere else and Dr. Ye(MD Anderson can still be involved with making the decisions on your treatment protocol.

Just my 2 cents.
“There’s No Quit In Me”!

splashgirl1961 | @splashgirl1961 | Aug 13, 2023

In reply to @mike02041950 "Thanks for the input. I do have Medicare along with the Aetna Direct I signed up..." + (show)

Never give up here too! My life motto, NOT DONE YET… best of luck!

michaelah | @michaelah | Aug 14, 2023

Mike - my story is similar to yours. I was diagnosed with WM over a year ago. I lost about 20 lbs and couldn't work outside for long. My oncologist didn't think it was from WM so he had me get stress test with PET scan, CT scan of my lung, pulmonary test and more. Everything was good. My blood only showed a slight anemia - not enough to account for the tiredness - they say. My problem is that they didn't have a baseline blood test to say that (haven't had a blood test in many years). I have had about 12 Rituxan infusion - another tomorrow and I am much better now. I can mow the lawn, re-build my deck etc. My wife is really happy with that. So, I think it was my WM that caused it as my latest Bone marrow biopsy shows the WM about gone.