[Chaz62]

HMPV infection - 6+ weeks to diagnosis (rant)

by Chaz62 on Sat Feb 15, 2014 12:02 pm

So, I just got the call from Moffitt that I have metapneumovirus, otherwise known as HMPV. I haven't done any research on this yet to find out how serious it is for us myeloma patients, but I will start ribavirin treatment for this today.

If anyone out there has any experience or insight into this chime in please.

Hopefully this will not interfere with my scheduled admission next week for DCEP chemo for my progressing multiple myeloma.

Here's my rant and the history of this.

In early December 2013 we began treating my progressing myeloma with Pomalyst. In late December I was experiencing severe shortness of breath, so severe that simple chores caused me to be out of breath and need to rest and catch my breath frequently and increasing fatigue. Compounded by some bone pain for lesions in my spine I was feeling pretty crappy.

At this point I was thinking ... my God, if this is what POM does, I don't know if I want to stay on it.

Without going in to a lot of detail, after several tests including MRI, CT scan, x-rays, labs - an ER visit to a different hospital for shortness of breath. Three days ago I began running a low grade fever and yesterday contacted my my oncology team to report this latest development. They did a nasal swab for a viral panel which came back positive for this virus!

While I know my oncology team has my best interests at heart, throughout this whole process there has never been a clear diagnosis but more of a rush to judgement my new symptoms were more related to my progressing disease, Pomalyst, and personal health factors.

I missed quite a bit of work due to fatigue, shortness of breath, doctors visits, etc.

"Well Chuck - it could be your cancer is more active, you have a bit of emphysema , you're a smoker (yes, I know and trying desperately to quit), add to that the Pomalyst, your low RBC and Hgb. All combined could be causing this. "

Never a clear diagnosis or treatment plan and while I personally did not feel that symptoms this severe were completely due to these conditions, who am I to argue with my docs?

Grin and bear it, move on and live with it was my mindset.

I guess this presents an interesting dilemma for our medical teams. (How and when do we explore causes of symptoms outside of myeloma-related?).

As I understand it this antiviral panel they did yesterday is quite expensive so it was done until I presented with worsening symptoms - ie fever - BUT - if it had been run earlier I would not have gone through such a miserable 6 weeks. Lets hope the ribavirin does it's job and I start feeling better soon.

So any thoughts on rush to judgment or this virus?

[Arkansas HMPV case]

Re: HMPV infection - 6+ weeks to diagnosis (rant)

by Arkansas HMPV case on Wed Jul 02, 2014 6:35 pm

I hope that the ribavirin was effective and that you survived the metapneumovirus infection.

My husband, a multiple myeloma patient who had almost achieved complete remission, was completing his final consolidation chemo in the Total Therapy 4 protocol at UAMS in Little Rock when he was diagnosed with metapneumovirus in late January, 2014. Pneumonia developed, hypoxia progressively worsened, and he was ultimately placed on a ventilator. Sadly, he could not survive the metapneumovirus onslaught to his lungs and passed away after 20 days hospitalization.

I did question why he was given the final Velcade dosage on day 11 of the treatment regimen, when he had already been diagnosed with the metapneumovirus and was already in the hospital for breathing support, but we were assured that it was okay. I realize now that, while the Velcade may not have changed the outcome, it certainly did not work in his favor, considering the metapneumovirus infection which was much more serious than I realized at the time.

To my knowledge, he was not given the antiviral, ribavirin, and I am not sure why not, as a wide spectrum of antibiotics were administered. Again, I hope that you recovered and are well on your way to putting your myeloma into remission.

[Nancy Shamanna]

Re: HMPV infection - 6+ weeks to diagnosis (rant)

by Nancy Shamanna on Wed Jul 02, 2014 8:54 pm

Dear Arkansas, I am so sorry to hear about how your husband passed away from a pneumonia infection. It sounds truly awful and very sad too, given that he was almost finished with his treatments. This is the sort of scenario that all of us myeloma patients are in fear of, actually.

I don't think that you are unique in this happening, but I hope that your fond memories of your life together help to sustain you in this time of loss. Thanks for sharing, and best wishes.