I met with my myeloma specialist, Dr. Melissa Alsina, at Moffitt Cancer Center in Tampa yesterday.
Great news! After completing my third, six week full dose RVD chemotherapy cycle, I learned that my monclonal protein reading (M-spike) has continued to edge downward.
Let me back-up and fill-in a few of the blanks for our new readers.
RVD (Revlimid,Velcade and dexamethasone) is considered by most myeloma docs to be the gold standard of myeloma therapy.
It can be used for induction (the initial treatment for newly diagnosed patients and/or before harvesting stem cells and/or proceeding to transplant–or for consolidation (post SCT) like we are doing for me now.
If you recall, my doctors were shocked when my M-spike was significantly higher after my transplant this summer than it was before.
I started with a clean bone marrow biopsy and a low, 0.2 M-spike. But three months following my SCT, my M-spike was up to 0.6.
This was serious, since my form of myeloma starts to attack my bones in the 0.5 range.
Since RVD had worked for me during consolidation, Dr. Alsina and my medical oncologist, Dr. Malhotra, settled on a series of six week RVD cycles to try and get things back under control.
Velcade once a week sub-q for four weeks, followed by two weeks off. Revlimid 25 mg for 21 days, with 7 days off. And 40 mg dexamethasone once each week.
This combo is hard on me, but it is working very well. As a matter of fact, it is working better now than it did before my transplant.
Dr. Alsina feels my transplant hit the “reset button,” allowing Revlimid to be more effective than it was after almost five years of continual therapy before my transplant.
And she may have a point. My M-spike has been dropping faster now than it did before. It has gone from 0.6 to 0.3 after the first six week cycle, then down to 0.2 and now 0.1.
That’s the good news. The not so good news–at least for the near-term–is that Dr. Alsina recommended an additional two or more RVD cycles.
That means more fatigue, low white counts (neutropenia) and revved-up peripheral neuropathy.
But that OK. Since 25 mg of Revlimid is especially hard on me, Dr. Alsina did give me the option of cutting the dose down to 15 mg.
My response: Heck no!
Inconvenient side-effects or not, we both agreed to hit this thing hard now–while we have it on the run.
We discussed possible maintenance strategies, too. But since I won’t see Dr. Alsina until after two more cycles (three months) are complete, we agreed to table our discussion until the end of April.
At that point, my guess is she may recommend an additional cycle or two before we move into maintenance mode.
The bottom line: It looks like I’m going to be around for awhile, gang!
I was starting to think about my survival in terms of months. I much prefer thinking in years! Between the remaining RVD cycles, maintenance and then an inevitable, hopefully slow return of my myeloma, we are probably talking about two or maybe three years before moving into some sort of salvage therapy.
Plenty of time for Onyx and Celgene to finish-up their carfilzomib and pomalidomide studies…
Yep. I’m going to have enough time to finish books number four, five and six.
And based on the success of Danny’s Diet and Multiple Myeloma series, our helpful tech volunteer, Robb, Pattie and I are already planning on upgrading our long running Help With Cancer.org site to feature more helpful info about nutrition and anti-cancer supplements.
Lots to do–and more time to do it. Life is good!
Feel good and keep smiling! Pat
February 7th, 2012 at 11:08 am
This is really great news! I am so glad things are improving.
Keep fighting.
Mike
February 7th, 2012 at 11:22 am
Very good news Pat. I hope you live to a ripe old age and don’t stop writing until this beast is cured.
February 7th, 2012 at 11:28 am
The reset button was one of the questions I asked at the IMF conference. I asked if an SCT can reset the patient so that Rev and Velcade will work after it had stopped working prior to the SCT. Dr. Bargoole’s answer was, “We don’t know”. Nothing definitive but still there is hope that that will occur.
February 7th, 2012 at 12:16 pm
Wonderful news, Pat, especially since my husband has been in a similar situation! And thank you for your continued hard work in getting good information out to those coping with MM!
February 7th, 2012 at 12:27 pm
So good to hear this Pat. Many of us count on you. Keep up the good work.
February 7th, 2012 at 1:26 pm
Great news. Your contract seems to have no termination date written in. Personally, I would have gone with the lower dose of Rev, but that is always an option if you have problems with it.
I’m off to Cedars today to begin my transplant journey. I feel very calm about it, thanks in large part to the preparation I garnered from communicating with you and, especially, reading your latest book. I’ll be keeping up my blog. Stay tuned. And to the extent possible, I’ll keep smiling while I’m barfing – it that is physically possible.
February 7th, 2012 at 3:35 pm
Excellent news! I like how you are thinking with respect to keeping up the full dose of Revlimid. The side effects from the drugs (which do suck) are usually temporary. You know how aggressive I was with my therapy, so while I hate the fact that all the therapies have side effects on us, those side effects are less damaging than what active Myeloma does to our bodies. Sounds like the newer therapies have less side effects so that indeed is something to look forward to.
February 7th, 2012 at 3:45 pm
Hey, great news Pat!! You are an inspiration to soooooooo many of us MMers.
But remember, pace yourself….and on occasion…. you’ll have to allow some of us to help you too!! It goes both ways friend!!
All the best, Steve
February 7th, 2012 at 4:00 pm
Wow! I run some errands and return to find so many kind thoughts…
Thanks, everyone! Richard, I like Dr. Barlogue’s answer. Unfortunate that there is so much myeloma “experts” don’t know. Seems wrong, that with all of the research dollars and studies that there are so many unanswered questions. Actually, it bothers me, to tell you the truth. What gives? Get this stuff figured out!
February 7th, 2012 at 4:02 pm
I just received the following email from a good friend who is transplanting soon…
Great news. Your contract seems to have no termination date written in. Personally, I would have gone with the lower dose of Rev, but that is always an option if you have problems with it.
I’m off to Cedars today to begin my transplant journey. I feel very calm about it, thanks in large part to the preparation I garnered from communicating with you and, especially, reading your latest book. I’ll be keeping up my blog. Stay tuned. And to the extent possible, I’ll keep smiling while I’m barfing – it that is physically possible. Ed
February 7th, 2012 at 5:00 pm
Pat,
What wonderful news! You and Patti definitely have a very good reason to ‘feel good and keep smiling’. So happy for you. Deborah
February 7th, 2012 at 5:02 pm
Great news. My Revlimid maintenance has stayed at 10 mg due to side effects. I want years not months so it always seems to be about choices. This is outstanding! Linda
February 7th, 2012 at 5:06 pm
Pat, great news!!! Glad to hear that the SCT did work for you after all. The reset button statement had a sweet sound to me because I have enough stem cells in storage for 7 more transplants. Hope I don’t need them. Best Regards/Gary
February 7th, 2012 at 5:09 pm
Thanks, Deborah! Linda, my gut tells me 10 mg is probably plenty. But I’m going to “suck it up” and stick with what’s working…
I wish the “re-set button thing” worked like that all of the time, Gary. But like everything myeloma, sometimes it seems to work that way–and sometimes it doesn’t. What a frustrating, hard to figure disease…
February 7th, 2012 at 5:09 pm
Great news Pat!!!!! It’s party time.
February 7th, 2012 at 5:32 pm
Great news, I am happy for you.
February 7th, 2012 at 5:49 pm
A party? Great idea! My 56th birthday is coming up this weekend. Maybe we should take some extra time and kick-back and celebrate. Thanks, Pat!
February 7th, 2012 at 5:58 pm
Pat,
I think sticking with the 25mg Revlimid is a good idea – keep knocking it down and hard!
Then when you feel the beast is locked up tight, you can reduce to a maintenance level if you want. And of course, if the side effects get too bad, you can always change you mind. Wow, Gary…7 transplants! i don’t even want to think about that!
February 7th, 2012 at 6:48 pm
I know! I don’t even want to think about a possible second SCT…
February 7th, 2012 at 7:51 pm
So happy for you, Pat! Have an extraordinary birthday celebration! You deserve it.
February 7th, 2012 at 8:56 pm
Thank you so much!
February 7th, 2012 at 10:45 pm
Pat, As echo’d by your supporters here, this is fantastic news! I am so happy for you, and I’m watching as a patient who is following a potentially similar path. I am on my second 8-cycle RVD course, after harvesting my stem cells in Sept. I am trying to postpone my ASCT and use it only for relapse/refractory conditions. My goal is to get my M-spike down as close to zero as possible, then transition into some sort of maintenance that Dr Anderson thinks suitable.
You are a true fighter and have an unbelievable spirit. It is a comfort to us all that you have great reason to be very optimistic!
Bob
February 8th, 2012 at 10:40 am
Nothing more for me to add as well but congrats and here’s hoping for a long and fruitful remission!
February 9th, 2012 at 2:17 pm
Yee Haww! Ride ‘em cowboy! It ain’t over, til it’s over! None of us have an expiration date stamped on our buts! Regarding Life, remember the lyrics “I love it, I love it, I want some more of it!”
February 9th, 2012 at 4:17 pm
Sounds like I should try some of the wine Dianne has been drinking… Never hurts to get a little crazy, right?
February 16th, 2012 at 10:01 am
Congrats, Pat!! You are an inspiration to many of us and have taken the time to include us in your journey too. ‘Nothing but blue skies from now on!’ Best wishes to you and Pattie.
February 16th, 2012 at 10:27 am
Thanks much, Nancy!
March 3rd, 2012 at 1:00 am
Pat such wonderful encouraging news. It looks like my Doctor has me on same medicine and chemo as you. Do you take vitamins and herbs to supplement your medication?
Thank you for blog. After years of fatigue was diagnosed with MM Jan. 9th of 2012.
Regards,
Fred L. Davis
March 3rd, 2012 at 1:18 am
Thanks, Fred! If you go back and follow Danny’s nutritional column you should get lots of good ideas. He also shares info about a heavy duty supplement plan I’m trying. Is your chemo working for you, too?