[jmp56]

Diagnosed after prostate surgery early this year

by jmp56 on Tue Aug 22, 2017 5:24 pm

Like many others, I was diagnosed with multiple myeloma without knowing what it was. In the fall of 2016, I was diagnosed with prostate cancer. In preparing for surgery, I had pre-op blood tests. They came back "a little out of the normal range", but not so bad as to postpone my Da Vinci robotic surgery scheduled for end of December. As I neared my surgery date, my lower ribs started hurting, and I notice that taking a hike was getting more difficult. Surgery went great and I was back home by Christmas Eve. After the new year, my rib pain became progressively worse to the point I could not sleep in a bed. I couldn't believe that I went through the surgery only to "pull my chest muscles."

I then started getting very fatigued, but once again I thought it was due to my lack of sleeping. Finally, I went to work on a Thursday, sat down at my desk, and literally just stared at the computer for one hour. I finally dragged myself up and drove home. Don't remember much else of the next couple of days, but ended up in the ER then ICU for 6 days. My kidneys were down to 5%, and through CT scans and blood / urine tests I was diagnosed with something called multiple myeloma. Another cancer, but this one could not just be fixed by an operation. I have IgA kappa, my IgA was at 4400 mg/dL.

I spent an additional 7 days in the hospital. Luckily my kidneys responded very well and I didn't need dialysis. I also started my initial treatment: Velcade, Revlimid, and dexamethasone (RVD), 28 day cycle (21 on, 7 off).

I responded very well to this treatment for four cycles, then I started getting peripheral neurop­athy to the point of dropping down to a quarter dose of Velcade. I also stopped taking the Revlimid in anticipation of getting a stem cell harvest / transplant.

In the beginning of May I developed pain in my upper right-side ribs. It was bone pain and very severe nerve pain that wrapped around from my spine to the middle of my chest. My oncologist thought it might be shingles even though I did not have a rash. After a heavy dose of Valtrex (valacyclovir), symptoms were not any better.

I was scheduled for a stem cell harvest on June 6th and was supposed to start the Neupogen injections the Friday before. I developed a 102 degree F temperature (38.9 C) and they delayed my stem cell harvest. Instead I was admitted back into the hospital for a PET scan and further blood tests. The PET revealed fractures in 13 of my 24 ribs, with a new "hot spot" under my arm. My IgA was back up to 1272, as were most of my other indicators.

My oncologist then came up with a different treatment plan starting with two four-day cycles of cisplatin, cyclophosphamide (Cytoxan), and etoposide (Vepesid) along with Kyprolis (car­filzo­mib) and dex. I currently just finished my first new 28-day cycle of Kyprolis, Revlimid, and dex. This cocktail takes a little longer to recover, but the neuropathy is not that strong.

I am scheduled for further testing next week (FISH, free light chain levels, etc) to see where my levels are now. Hopefully, I'll be able to get into a remission stage that will last longer than the two weeks I had after my Initial treatment. Currently we do not have plans for a stem cell transplant, but they did harvest my stem cells just in case they are needed.

It's been a very long 8 months with three different hospital stays, and not really feeling well for most of the time. Luckily I've been able to work and keep my insurance. I'm not sure what I'd do if I lost those. Trying to stay upbeat, but every time I have a new pain my first thought is "It's coming back".

[acventura]

Re: Diagnosed after prostate surgery early this year

by acventura on Sat Dec 02, 2017 10:33 am

Thank you for sharing your story. It is so helpful to understand the symptoms,progression of the disease, and to be able to peer into the type of treatments offered and their effectiveness. I am a caregiver for my mother, who has all the markers, including lesions, but no pain or medications so far, and she will want to keep it that way. There are a lot of unknowns with this disease, and each case appears to be unique. I hope your treatments are successful. Stay upbeat and thanks again for sharing your story.