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dhewittm
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| Joined: | Sun Nov 11th, 2007 |
| Location: | Alpharetta GA |
| Posts: | 1 |
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Posted: Thu Apr 10th, 2008 06:17 am |
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 Well my journey with Multiple Myeloma started a little over 4 yrs ago in October 2003 when I began having some sternum pain which I thought was attributable to my workout schedule. In Jan when the pain persisted and started spreading to the collarbone and rib area....I started having chest spasms that felt like a heart attack, if I were to imagine what one would feel like. After a friend insisted that I go to the ER and get checked out, they ran a few tests and a doctor came in and asked me if I knew I was at the point of renal failure. Of course, I said, what's that? They referred me to a nephrologist the next day. Upon visiting the nephrologist, he said I had 1 of 2 things...neither of which was good. I was admitted to the hospital, in great pain, and the physician's assistant came in and said they were going to do a bone-marrow biopsy. That was the most painful and greulling experience...I was terrified, and my awesome husband, almost passed out watching.
The next day they came to deliver the news - I had Stage III B Multiple Myeloma (Lambda Light Chain) with Renal Failure and multiple rib fractures. I would have to have dialysis 3 times per week and 14 radiation treatments to ease the pain. This just wasn't in my life story at age 39!!
After receivng the radition treatments in Atlanta where we lived and starting on Thalidomide and Dex, we were told to go to the transplant doctor in Atlanta to discuss a transplant. After discussing my case with the doctor, he was hesitant to do the transplant because they had never done a trasnplant on a renal patient before.
We were told about UAMS in Arkansas and their well known treatment for myeloma. We called and were able to get an appt in April 04. When we did our consult with Dr. Tricot in Arkansas he said the first things he wanted to do was to get me off of dialysis....which made my eyes light up, since dialysis made me feel worse than the chemo or other drugs. Dr Tricot said I needed to stay in Arkansas to start treatment right away...which consisted of collecting stem cells for a SCT in April 04 and then a second one in June 04. I achieved remission after the first transplant. I was able to come off of dialysis in Dec 2004. YEAH!!!! and have been off since then.
Following the second transplant I was put on a maintenance program consisting of THalidomide and Dex. I relapsed in May 06 and then participated in a drug trial starting in June 06, to which my body did not respond. This meant another SCT was in the future. I harvested more stem cells, then had a 3rd SCT in Oct 06. I achieved complete remission after this 3rd transplant and am on a maintenance of Revlmid, Dex, and Velcade. They continue to monitor my kidney function.
It has been 4 yrs now....I am feeling good most of the time....prone to alot of infections that are floating around, but try to be extra careful about avoiding contact with people or places where they are running around.
I am soooooo very grateful to Dr. Tricot, Annick and his staff for being so attentive and responsive when I have a question or need. I don't think there is any better care available out there..
Thanks so much Dr. Tricot!!! We consider you part of our family!
For those of you just starting on this journey...don't be too afraid...you are in good hands with Dr. Tricot....the best.
Each day is new...and each day is a gift....I try to embrace them and make the most memories I possibly can.
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AT
Member
| Joined: | Thu Nov 8th, 2007 |
| Location: | San Antonio |
| Posts: | 4 |
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Posted: Sat Apr 12th, 2008 01:05 pm |
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Congratulations DHEWITTM on the long duration of your 3rd SCT. Like you I had a tandem in Little Rock in 2002/03, but was offered a 3rd Auto-SCT in late 2004. This was the most difficult recovery, but I feel a lot of that was due to a 2nd collection just before the 3rd SCT. But no hospital stay, just lots of the little antibiotic infusers and rough intestinal issues.
I continued on VDT and then VDR, then Dr. Tricot added Lipitor and Celebrex (lowered M-spike 40%) in March 07. Had a sudden and unepexted replase in Nov 07. Dr. Tricot has taken me off Lipitor/Celebrex (which were added only as off-label benefits to MM). Now on lower VD (no Revlimid) but added ATRA and Cytoxan. It's been a delicate balance of keeping platelte/PRBC transfusions and the chemo orders in check. So far, things are improving w/ my IGA-Kappa MM and M-spike is back down to a trace!!
Thanks for sharing your story. I'll be back in SLC 2nd week May for my 4th visit to Huntsman, and I now agree that the Homewood Suites next to the train station is so far the best place and value. Also lots of great eating nearby. Although you do need a car to get around.
Live Strong! I'm joing the 6-year club next month.
AT
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jazzmom
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| Joined: | Wed Jul 9th, 2008 |
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| Posts: | 15 |
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Posted: Wed Jul 9th, 2008 10:30 pm |
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| When you initially had kidney failure, what stage kidney failure did they indicate? Do you remember your creatinine levels. How did your kidneys faire during treatment?
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