Thursday afternoon I met with my myeloma specialist, Dr. Melissa Alsina. I have had a standing appointment with her every three months since before I went into remission–and quickly bounced-out ten weeks later–one year ago. But this visit was different. It was to be a fateful one; a turning point.
Due to significantly reduced cellularity (the ability of my bone marrow to produce healthy red cells, white cells and platelets), Dr. Alsina had recommended we finally–after almost six years–put Revlimid on the shelf and see if Velcade and dexamethasone alone could keep my myeloma stable.
To review, 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 this 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.
But there’s more. 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.
And what about my “Thank God for Velcade!” headline? Since I am experiencing far fewer side effects now that I’m off Revlimid, I feel like I have started to get my life back!
I would like to note that I feel my headline ethically requires me to remind my readers that I was formerly a Millennium (makers of Velcade) Patient Ambassador. Millennium payed my expenses when I traveled around the country to speak to myeloma support groups, even before I started using their drug. But traveling was difficult for me, and I am no longer physically able to be a part of the program. Pattie and I are still doing some “patient perspective” consulting work for Millennium from time to time.
And why not? I might as well recoup a small (very, very small!) amount of the money my insurance company and I are paying them each month. Just a touch of sweet myeloma patient pay-back!
Needless to say, Pattie was ecstatic about the news. We plan to celebrate by going on a fun St. Patrick’s day outing Sunday–a must when your wife’s maiden name is Doyle.
Feel good and keep smiling! Pat
March 15th, 2013 at 11:34 am
Pat
Congratulations !
Have a “green one ” for me.
John
March 15th, 2013 at 11:40 am
That’s great news Pat, and I hope you and Ms. Doyle have a wonderful time on Sunday. But don’t you just love the trial and error nature of our treatments? It seems that we are all our own experimental subjects.
March 15th, 2013 at 1:12 pm
Fantastic news, Pat! So glad to hear it!
I often wonder why Revlimid is the “go-to” drug for maintenance therapy, while Velcade is cast away. Sure, with Velcade you deal with PN(not so much with sub-q), but with Revlimid you deal with low WBC counts and potential DVT. I need to ask my doctors about this.
Anyway, keep up the great results! And Happy St Patty’s Day!
March 15th, 2013 at 2:06 pm
So great, Pat. I’m really happy for you.
Enjoy the green!
Danny
March 15th, 2013 at 2:28 pm
That is absolutely wonderful for both you and Pattie! What great and joyous news!
Cris Sullivan
March 15th, 2013 at 2:38 pm
Thanks Danny, Bob, Holt and John! Bob, I often wonder that, too, especially since Velcade is the only FDA approved therapy for newly diagnosed patients. But Medicare and most private providers pay for Revlimid. Of course, it may cost more because its oral–something the IMF is working hard to try and fix. Amazing I never even tried it until well into my relapse four and a half years ago! One could argue in this case the “incremental approach” is working. I was naive to Velcade and it is working for LUCKY ME!
March 15th, 2013 at 3:58 pm
Wow! Fantastic news Pat….I’m VERY HAPPY for you…what a grrrrreat feeling that must be?
From one Scot-Irishman…. to Pat & Pattie:
“May the road rise to meet you,
May the wind be always at your back.”
ERIN GO BRAGH!
March 15th, 2013 at 5:39 pm
Congratulations & Luck of the Irish to you & Patty! I am currently on Rev as maintenance & still deciding if I will continue with it for a year! Happy St. Patty’s Day!
March 15th, 2013 at 10:52 pm
That is good news indeed ! I follow your column every day from Australia and wonder if you could answer a question please? It seems that here ( and in UK? )para- protein, or M spike as you always call it, is measured in g/litre, and it looks as if your measurement is g/dl. Is that so? And if it is, does it mean our measure is 10 times yours? I find it hard to work this out, and it doesn’t seem logical that a different measure would be used either. Thanks in anticipation.
March 15th, 2013 at 11:18 pm
Thanks Steve, Carol and Chris! Very festive well wished indeed! Now to Chris’ question. I have run into this before. Like many Americans, I have a hard enough time figuring differences in our own measures from lab to lab and clinic to clinic. All seem to do it a bit differently. That’s a long way of saying I have no idea! Except to say, like many cancer markers, trends are what matter. So whatever the measure, up is bad and down is good, unless it is Lambda light chain, where a high number is better than a low number. Now everyone is confused. Maybe one of my more technical readers can answer your question. If no one steps-up here in the comment section I will put-it-out-there in a blog post and see if someone can’t help…
March 16th, 2013 at 12:14 am
pat, I am glad to hear that you have had good results with velcade, and that your labs are stable!! have a great St. Patrick’s
Day…
Chris, measurements in gm/Dil are ten times higher than measurements in gm/liter. look at the norms as given on your lab results. on my lab results a normal range is stated, and also results outside of this range Re labelled H for ‘high’ or L for ‘low’. you can’t always just divide American results by ten foe comparison since some countries use micro moles instead of grams as a measurement. hop that helps! (please excuse the typos from my IPad)
March 16th, 2013 at 12:22 am
Thanks for helping Chris, Nancy! How wonderfully unfortunate to be a part of an active myeloma community…
March 16th, 2013 at 12:31 am
Pat,
It’s great to hear your positive news. I was on revlimid and dex recently ( my onc cut the velcade in Jan.). I had a pulmonary embolism this past Mon. I’m on blood thinners and feeling better . I think the 25 mgs. of revlimid is definitely a culprit since I’ve never had heart or lung problems. I stopped the revlimid and will see Dr. Bahlis, my oncologist, on Wed. next week. I respect his opinion.
From my experience I urge anyone on revlimid to be very aware of heart palpitations and shortness of breath. I had the symptoms off and on the past few weeks but my heart rate was 180 when we hit emergency on Monday. Glad to hear that sub-q velcade could be an option.
My maiden name is Corrigan and we will be celebrating the wearing of the green also!
Sue Witcher
March 16th, 2013 at 12:34 am
Great news, Pat. You’ve had a rough road for a while, and it’s great to hear something positive for a change.
I see your Badgers beat Michigan last night, good news all around.
Take care, my friend.
March 16th, 2013 at 8:56 am
Great news! That is great that you are going to stay off the Revlimid for a while. Just a quick comment on Bob M’s question as to why Revlimid is the “go to” maintenance. I think it is the oral delivery system. Is there any way to take subQ Velcade at home? How often do patients on Revlimid maintenace have to go see their Doctor? If a patient was doing Velcade maintenance they would likely be going twice per month which I am guessing is more often than patients on Revlimid maintenance.
March 16th, 2013 at 12:17 pm
Thanks, Howard! Howard and his lovely wife, Teresa, resurrected a support group I visited in Spokane, Washington. Same group Patient Snapshot star,John Knighten, visits when he isn’t hanging around Seattle for transplant therapy. Anyway, Teresa attended Gonzaga. They have a remarkable basketball tradition for a small school buried in the foothills. Should be a number one seed in the NCAA basketball tourney that starts next week.
And I agree with Mark–fact Revlimid is oral probably makes it the go-to for newly diagnosed patients. But soon Millennium and Onyx will have oral proteasome inhibitors, too.
March 16th, 2013 at 12:22 pm
We have something in common, Sue! I also suffered a PE most likely caused by Revlimid. No fun, is it? My first symptom: a racing heart rate. Love Corrigan! We gave all of our rescued sled dogs Irish names; Murphy, Erin, Riley, Shannon… You get the idea. Ironically, the only rescue we have left is not a husky. His name is Finnegan. We call him our Island Dog. Corrigan would be a good, strong male name if and when we rescue another…
March 16th, 2013 at 2:01 pm
Good news for one of us is good news for all of us!!
Mark, I am on Revlimid maintenance. I see my oncologist every three months. Dx 2007 (like Pat) Dex and Thalidomide for induction, then SCT in Oct, 2007. I had a VGPR and am stable with a M-Spike of .5. I went into a big clinical study for Revlimid and was in the placebo arm. I have been on 10mg of Revlimid since January, 2010. I can’t handle a higher dose as it causes frequent running to the bathroom. Sometimes 10x per day. Also have neuropathy in my feet.
March 16th, 2013 at 3:32 pm
Pat, that is great news. I had a question about when you said you are susceptible to bone damage even if your M spike was at a somewhat low level of 0.5. How were you or your doctors able to make that determination? I ask because my done damage was pretty extensive at my diagnosis in 2010. Luckily, my Myeloma has been stable with an M spike around .2. But I don’t where that threshold would be for lesions to start if my numbers ever crept higher. I know many Myeloma patients who are stable with an M spike .5 or higher.
Thank you for your great posts.
Enjoy a great St. Patrick’s Day!
March 16th, 2013 at 4:33 pm
Great question, Denis! I relapsed and my M-spike was on-the-rise steadily at a rate of 0.1 or so a month. By months six a PET scan showed eight “hot spots,” including an almost inch wide new lesion in my right hip. I say new because I had another a bit farther up from before I was first diagnosed. We radiated the hip and I decided I couldn’t mess around like many survivors who live with M-spikes of 3.0 or even higher. So I had my transplant–didn’t work very well–and my M-spike actually went up from 0.1 at time of my admission to BMT unit to 0.5 at the three month mark. When it jumped to 0.6 two weeks later after a re-test, everyone started to panic. I have a myeloma friend with an M-spike approaching 6.0 and he is still asymptomatic and not being treated. Amazing how differently myeloma can affect us, isn’t it?
March 16th, 2013 at 5:41 pm
No question Pat, Myeloma has so many diverse aspects. There are many similar stories but each of us has to take a unique approach to deal with this cancer. In my local support group here in Central Massachusetts, many people talked about 1 specific problem area at diagnosis. My disease was diagnosed with a severely damaged vertebra that required fusion surgery soon after diagnosis. But I had lesions on my spine, rib cage, and clavicle at diagnosis. Scans still show lesions on my spine and the rib cage area but they have not gotten worse.
As long as I stay stable, I think will be ok. But it is something that will be in my mind the next time is see local doctor or my doctor at Dana Faber.
March 16th, 2013 at 8:41 pm
Yep. Always in the back of our minds–unless you go extended periods of time in CR. Maybe then some people can forget about it. I can’t, obviously, but I’m OK with that!
March 17th, 2013 at 8:16 am
Good news for you Pat, hope it stays effective. I am in a similar situation. Dr Alsina took me off Rev after two years because blood is not rebounding. Lots of transfusions but hemoglobin hangs at 8, platelets at 14, M spike at 1.0. Taking procrit, velcade and dex. Have an appt at Emory U in Atlanta next week for evaluation and 2nd opinion. Has anyone had any experience with the Emory group? I had not heard of them before.
March 17th, 2013 at 1:52 pm
I know a number of patients that have gone to Emory, Jeff. My take is it gets mixed reviews. Any second opinion from a reputable institution (which Emory certainly is) and a qualified hematology/oncology specialist is a great idea! Let us know how things turn-out.
March 22nd, 2013 at 3:03 pm
I’m glad to hear the news, Pat. I have been having lots of problems since I started on my Revlimid trial last year. I have been in the hospital way too many times. It seems that I get a sinus infection almost every month. I have acute bronchitis and even had pneumonia at one point. Last month, I landed in the hospital (local) for 6 days. I had an infection and my white blood cell count crashed and they had to give me a shot of Neupogen. Every time I have a major problem, they have to lower my dose. I am now down to the smallest dose possible (5mg). I had one month to see if I was going to be able to stay on the trial. If I get majorly sick or my white count crashes again, I am off the study. I go back to Moffitt on April 1. My doctor and coordinator will decide at that time. If I go off, I will have to be a sitting duck until I relapse and can go on another therapy. If I am able to stay on, I will do so until it seems like it is starting to cause me to get sick again.
March 22nd, 2013 at 4:29 pm
I’m so sorry, Barbara. I have the same problem on Revlimid, its just not as acute. Over a year or two, my ANC and white counts slowly drop. Yep, then I need neupogen shots, too. If you weren’t on a trial your doctor (who are you seeing at Moffitt? I’m sure you’ve told me–refresh my memory) would try two weeks on and two weeks off, probably at 10 mg doses. But once our immune system gets whacked-out, it takes a long time to get back and stable. So frustrating! Keep in touch and let us know how you’re doing, OK?