Friday I left everyone hanging when I wrote: Monday I am going to explain how this seemingly mundane result–a 0.2 M-spike–may have been the most fateful news I have ever received as a soon to be six year multiple myeloma survivor. I know I said Monday. But I couldn’t resist yesterday’s fun and frivolous, self indulgent look at our fun St. Patrick’s Day. But now the barking dogs and bagpipes are only a fading memory. Time to get back to work!
Let me reproduce more copy from Friday’s post as a review to help get us started:
Even a small M-spike can be dangerous for me. After my first relapse, I began to experience bone involvement and damage at a low M-spike of 0.5. So even an upward creeping 0.2 number was concerning.
Since I had never used Velcade until my induction therapy prior to my auto stem cell transplant 20 months ago, I had asked Dr. Alsina before we started consolidation therapy, after my transplant, if we should experiment with Velcade and dex alone. After all, I had been using Revlimid for the better part of five years. But RVD (Revlimid, Velcade, dex) worked so well for me during consolidation she didn’t want to mess with it. And in her defense, it had worked much faster post transplant than it had before.
But following that report, she had decided it was time to stop cold-turkey. “Let’s drop the Revlimid.” Said my doctor of few words.
So Thursday’s appointment was key. After three months, could Velcade and dex alone do the trick?
YES! Results from last week’s PET scan remained stable, with the only questionable area my already damaged right hip. That single hot-spot could be written-off as layer upon layer of lesion-laced decay.
And my M-spike. A wonderfully stable 0.2. Weekly Velcade and 20 mg dex had done the trick and held the line. Better yet, my Kappa/Lambda quantitative free light chain ratio had dropped below the magic value of 1.0; now 0.93.
So what is the significance of all of this for me–and more importantly for you?
We all dread the lab work analysis we get from our doctors. Whether it’s monthly, every two or three months, we wouldn’t be human if we didn’t sit-down in that exam room with trepidation. We’ve all be there, right? “Am I still in CR?” “Am I still stable?” “Has the new therapy helped slow things down?”
Month in and month out. Always the same. Of course, if our myeloma is “gone” or stable it helps us feel a bit less apprehensive with time. But invariably, that sense of uncertainty or dread returns–and so does our myeloma.
I received good news from Dr. Alsina last Thursday. My myeloma had remained stable for three months. So what? What made this news so fateful for me?
It proved Velcade and dex alone are capable of keeping my myeloma at bay. I wasn’t in remission–that had only lasted a short ten weeks. But stable at a low 0.2 M-spike works for me!
More importantly for my long-term prognosis, this proved that my myeloma will respond to a proteasome inhibitor as well as an IMiD.
Let me back-up a sec. Like Thalomid (thalidomide) and the newly FDA approved drug, Pomalyst (pomalidomide), Revlimid is an IMiD; an acronym for immunomodulatory drugs. Revlimid worked for me–on and off–for five+ years. This makes it likely that I will respond to Thalomid and/or Pomalyst.
Now Velcade is working for me. Velcade is a proteasome inhibitor, a second class of anti-myeloma drugs. Newly FDA approved Kyprolis, and the experimental, intriguing new drug, MLN9708 are both also proteasome inhibitors.
What makes last Thursday’s news a game changer? Now that we know my myeloma is responding to Velcade and dex alone–like IMiDs–I am more likely to respond to Kyprolis and/or MLN9708, too.
With all the news circulating about new drugs, one stark fact remains clear: IMiDs, proteasome inhibitors and high dose melphalan (used just prior to a stem cell transplant) are (so far) the only three ways to achieve remission.
Depending which expert you ask, there are theoretically six or seven pathways doctors might use to attack myeloma. Researchers are feverishly pushing to establish additional therapy options that utilize new pathways with mixed results. If and when they are successful, they may be able to box myeloma in and achieve what I call a “chronic cure.”
More about all of this on Thursday. Tomorrow I’m going to run a promo about this month’s Myeloma Cure Panel broadcast. I can’t put it off, since we air live Wednesday night!
In the meantime, feel good and keep smiling! Pat
March 19th, 2013 at 12:47 pm
Pat…just a suggestion but given your pre-existing PN you might want to consider (if you haven’t already)having your Velcade injection just 1X/wk.
From what I’ve read and heard from MM specialists a once per week dosage is JUST AS EFFECTIVE as twice per week!
Best,
S.
March 19th, 2013 at 1:01 pm
Great suggestion, Steve! And yes, I have been getting sub-q injections once a week for four weeks, two weeks off. Rinse and repeat!
March 19th, 2013 at 3:20 pm
Great news, Pat. If you do not mind my asking, is there any discussion of you getting off the DEX for a while? I am always surprised that the Docs keep younger patients on steroids for such a long time. Maybe you could use Doxil or Cytoxan for a while in DEX’s place. They both pair well with Velcade. Doxil worked well for me for induction. With respect to your article a couple of days ago about Doxil, I think the myeloma Docs like to just use the latest and greatest “miracle” drugs. Doxil is a reformulated version of an old drug. They would not feel “cutting edge” if they prescribed it!
March 19th, 2013 at 5:10 pm
That’s a good suggestion, Mark. No, we haven’t discussed it. I think fact my remission ended so quickly–when I was off dex–that my fate may be sealed. Fortunately, I seem to get as much good as bad out of using dex. For example, helps a lot with my bone and joint pain for two or three days. I have more energy for a day or two. Sometimes I can’t sleep well but I’m never up all night. I might crash a bit but usually not so bad. And I’m “only” on 20 mg a week. So I’m OK with it. But I will discuss it with her next visit. Guess we both aren’t convinced plateau is going to last. If it starts to inch-up, try adding Cytoxan. Doxil still not available here. Hopefully story I ran about FDA and synthetic alternative is true and Moffitt can get it again soon. Thanks, bud!
March 19th, 2013 at 5:18 pm
Hi, Pat. For the first time in six years my kappa light chain was elevated, but everything else was negative. I have been having nagging lower back pain for a couple of weeks, so I went in for plain film x-rays today, and depending on the results of that, I’m to go for repeat lab in four weeks. My back is a mess, so back pain is not a surprise for me. That being said, Velcade and Dex put me back in remission in about seven months before, so I suspect, if this is a recurrence, my doctor will opt for that again, after radiation therapy, if the back pain is from the myeloma. My question is, with the injectable Velcade now, how is the Dex administered? I hare the Dex. It makes me crazy. I too, have pre-exhisting PN.
March 19th, 2013 at 5:35 pm
Lots of questions, Bonnie! But unlike a doctor that hates to speculate, let’s think about this together. Yes, most docs would try what works before first. Working backwards, I take dex orally. Lobby for 20 mg instead of 40 mg a week. Each little green pill is 4 mg. I take mine before bedtime on the days the shot is administered. Might be better to take it right before or after, who knows? I know people that take one or two pills a day if they are using Revlimid, too.
The back thing. You know, its only anecdotal, but seems to me most secondary plasmacytomas aren’t usually in the lower back. Not sure why. Maybe they do and no one I know has had it happen. But could be because it’s so messed up down there that there isn’t much marrow left to help get a lesion started. But it certainly could be the case. Just as likely its a coincidence, don’t you think?
Not sure X rays are the answer. May take MRI to know for sure. So aren’t you glad we cleared that up? HA! Still, I always feel better when I talk about it and hash-things-out. So comment or email anytime. Glad to help!
March 19th, 2013 at 6:11 pm
Thanks, Pat. You’ve helped a great deal. The lower back took such an onslaught of radiation in’98, when there were plasmycytomas popping up all over me (I surprised everyone and lived) that I don’t see how there can be much marrow left there. I do have osteoporosis, and other back issues and this isn’t my first rodeo with back pain. I hate MRIs, but I expect that will be in my near future, considering my doctor is thorough and leaves none of those proverbial stones unturned.
I will keep the 20 Mg. of Dex in mind, if it comes to that, but considering I’m a writer, I might slam through a novel in record time if I took the full 40 Mg. Wheee!
I seldom respond to your entries, but I do read them quite frequently. You’re doing a good service here, Pat. Much good health to you and thank you for all you do.
If I can ever be of assistance, let me know.
March 19th, 2013 at 11:36 pm
Your back sounds a lot like mine, Bonnie–a mess! I know what you mean about the dex. Actually, I get all the side effects at 20 mg without as much of a manic high. Still get some extra work done. But who knows what else its doing to our bodies…
March 21st, 2013 at 1:48 am
HI Pat,
How about a reduced dose of dex. Nothing wrong with 8 mg a week vs. 20mg
Just an idea.
March 21st, 2013 at 10:05 am
Hopefully our researching friends are studying just how low one can go and still receive the now proven synergistic benefit. But as far as I know, this (lower than 40 mg a week) number has yet to be established–an unfortunate reflection of how little emphasis is placed on a patient’s quality of life…
March 21st, 2013 at 3:45 pm
I visited with a lady who said she absolutely could not tolerate Dex, but got a response with Velcade without it but it took a long time. I don’t know how that would work in the general population.
I saw on a news program this morning, they are putting an A-team of experts together to try to find a cure for cancer. Now, that’s a novel idea! I hope they take into consideration patient safety and comfort, as you said, Pat, quality of life. But, hurray for the efforts.
March 21st, 2013 at 5:06 pm
All of the myeloma drugs work without dex, Bonnie. But adding dex can improve performance by as much as 40%, depending on the drug and study. Most don’t use dex for maintenance. This new A-team, the IMF’s Black Swan; why not? Trouble is, tough for these experts to think “outside the box.” They were born and raised inside the box! How about adding some Oriental medicine and holistic types into the mix. Wouldn’t hurt to toss-in a shaman, priest, rabbi, Buddhist elder and witch doctor, too!
March 28th, 2013 at 2:06 pm
Pat,
I am on Velcade once every 2 weeks and just convinced my oncolgist to reduce my Dex from 20 mg every 2 weeks to 12 mg every 2 weeks. I take the 3 little pills as I get my velcade shot. I am on a “maintenance” regime. My oncoligist indicated that long term maintenance with velcade does not carry the same risk of secondary cancers that prolonged use of revlimid does.
Ron
March 28th, 2013 at 7:14 pm
Makes sense to me, Ron! I like the fact you take the Revlimid right with the infusion. I had been waiting to take my 10 pills (now 5) right before bed because I slept better that night. But the more I thought about it, makes sense to take it together, since it may be/should be enhancing how well the Velcade works. So now I take it right a way when I get home. Have trouble getting to sleep, but it helps me overcome ache muscles and sluggishness I feel after Velcade injection…
March 31st, 2013 at 12:08 pm
I am very, very early in this disease. Getting Monthly Zometa Infusions. I am alone – my husband recently died. What can I expect? What will be the trigger to begin treatment? What Will I feel that lets me know it is time?
March 31st, 2013 at 11:52 pm
Sorry for your loss and recent diagnosis, Marty. How old are you–can I ask? One positive to focus-on: If you are otherwise healthy, someone’ who’s myeloma isn’t even active enough to be treated yet should be able to live a long time–easily a decade or more unless myeloma type is considered rare high risk. Email me specifics if you like and I will try to answer your questions: Pat@HelpWithCancer.org. Good luck and glad to help!
April 1st, 2013 at 10:18 am
Thanks for your offer to help. I am age 69 and in good health. Wish I had more specifics about my cancer, but I don’t even know what I should be looking at in labs. I plan to discuss this further with my Physician. I was in shock the first time we discussed management and natural course of the disease. Might hear better the second time!
April 1st, 2013 at 12:28 pm
Difficult to ask questions when you don’t even know what questions to ask! Check-in again when you feel like you have a better handle on things…