Pat’s Place: For Me, “Watchful Waiting” Becomes “Hopeful Waiting”
I have written about the challenges and frustrations of “watchful waiting” here in the past.
I believe this is one of the most challenging aspects of living with multiple myeloma—sometimes all we can do is watch and wait for our myeloma to return.
But something exciting happened to me today, which has changed my whole attitude about this. I would like to share the details with you now.
During a follow-up appointment with my myeloma specialist, Dr. Melissa Alsina from Moffitt Cancer Center in Tampa, Florida, Dr. Alsina became concerned about what might be my early stages of Velcade (bortezomib)-induced peripheral neuropathy (PN).
My PN causes tingling in my hands and feet—like they are asleep—sometimes it’s worse than other times. Fortunately, my PN is not painful, although it is for many others. It’s pain and worsening of other symptoms that Dr. Alsina wants to avoid.
Normally when PN begins, oncologists simply cut back the number of Velcade treatments from two per week to one.
However, in my case, Dr. Alsina was hesitant to do that, since my monoclonal protein numbers—or M-spike—had not been dropping as quickly as she anticipated. Since I am scheduled to undergo a stem cell transplant at Moffitt in June, it was hoped the induction therapy combination of Revlimid (lenalidomide), Velcade, and dexamethasone (Decadron), which I had never tried before, would drop my numbers significantly in a matter of weeks.
So we faced a dilemma: Reduce my weekly treatment from two doses to one in hope my PN wouldn’t progress—or risk a painful increase in my PN by remaining aggressive and sticking with the double weekly dose.
Dr. Alsina’s solution was to recommend I switch to a brand new way of administering Velcade, subcutaneously (or subQ), instead of by IV push.
Dr. Alsina reaffirmed the results of studies I had read, which showed that subQ Velcade was less likely to cause serious PN than Velcade administered by IV.
“I didn’t even know subQ Velcade was available yet,” I remarked, surprised.
She replied, “We have been using it here for several weeks.”
Let me explain. The formula of the Velcade itself is the same, but it is reconstituted differently for subcutaneous injection vs. intravenous.
Millennium Pharmaceuticals—the makers of Velcade—filed for approval of this new method of administration for Velcade with the Food and Drug Administration (FDA) in late March. However, doctors are already using the product “off label,” meaning before the FDA has approved this administration method.
I suspected subQ Velcade wouldn’t be available at my smaller, local clinic, the Florida Cancer Institute. This was confirmed when I met with my medical oncologist, Dr. Malhotra, there on Tuesday.
“I believe we can get it.” Dr. Malhotra said. “But I have never used it before—it is too new. Dr. Alsina is a specialist. She is more cutting edge than we can be here. If she says it is a good idea, I will review the literature and speak with her about it.”
Sure enough, when I arrived for the first of my two weekly treatments the next day, Dr. Malhotra had issued the order and I received the first subQ Velcade shot given by Florida Cancer Institute.
Can you say guinea pig?
So what? Why is this such a big deal to me?
Sure, it means I will need to undergo fewer IVs, and that should save some time and discomfort. But that’s not it. There’s more.
Two years ago, I attended a briefing on experimental drugs Millennium had in the pipeline. SubQ Velcade was one of the listed “drugs of the future.”
But for me, the future is now! Since I have never been part of a clinical trial, this is the first time I have experienced an experimental multiple myeloma drug becoming a reality. Here I am—a short two years later—using Velcade in a new and safer way.
I never dreamed something like this could happen so quickly! To use a drug that only a short two years ago was in clinical trials leaves me feeling uplifted and hopeful.
Hopeful. Maybe we should change the phrase from “watchful waiting” to “hopeful waiting!” Velcade subQ is proof that new, experimental drugs are on the way—hopefully in time to help you and me live longer and better.
Feel good and keep smiling! Pat
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Thank you for your upbeat report on the new way to use Velcade - it may very well be a good way for me to go before too long. I am, apparently, not a candidate for stem cell replacement therapy, so I am glad they keep improving on the use of what is already a very effective drug.
Pat, a great article, as always. Your writings are a great resource of information and thought. In June, I will be having a SCT as well. I was diagnosed in Oct of '10 with stage 3 MM. I recently completed 6 cycles of RVD. I had a 2 month break in treatment for spinal fusion surgery to repair damage caused by the MM. I have been fortunate to have only the slightest touch of neuropathy from Velcade. Its encouraging new treatments are advancing to the real world. I'm 40 years of age and look forward to seeing more and more advances to treat this cancer.
Pat, great to know this form of treatment is starting to be used in the US. When the original article was written I was discussing it with my oncology nurse and she was wondering if there were any injection site reactions. If you know could you let us know. I did velcade,cytoxin,dex. therapy for 4 months and 6 weeks later I had my SCT. The PN from the velcade was minor, but about 2 months after the SCT I my arthritis and carpol tunnel(in my right hand) got alot worse. I don't let it keep me from doing things, like yard work, but I do take 800 mgs of motrim at night. I try to keep moving because sitting is just bad, it can stiffen you up. It is an uncommon side affect of the melphalan they give you at transplant. Pat and Denis don't be scared about the SCT. When I was 19 I had an extremely bad bout of infectous mono, for me the transplant wasn't much worse than that. The one thing you will find is its hard to concentrate and you will get bored out of your mind because of it. If you are ADHD like me you will know what I mean. I'm doing great, complete remission and driving everybody nuts around me because I feel so much better. Have a great day.
Lydia and Dennis-
I'm glad you both seem to be doing so well! It isn't easy, is it? Thanks so much for reading. Glad I can help, even a little- Pat
Deidre-
I do share a touch of ADHD... "When I was 19 I had an extremely bad bout of infectous mono, for me the transplant wasn’t much worse than that." Wow! I can't wait! Kidding aside, sounds like the results were worth it. I'm happy for you! Deidre, you aren't the first transplant recipient to mention difficulty concentrating... "Bring lots of DVD's" he told me. I'm ready. I understand it won't be easy. Thanks for caring! Pat
Very cool Pat! I've been hoping for the subQ version to be available for Dave as he sometimes has to skip his weekly velcade altogether if away on a business trip. It would be so nice if he could have it at least for those occasions.
Sounds like you and I are walking side-by-side, Pat. I am also on Velcade/Dex (just finishing my first 21-day cycle), and am definitely starting to feel reactions to the Velcade (numbness, heart rate, etc) I'd asked my Onco about subQ before the first go-round, and he indicated that this is not being done here yet (Ontario, Canada)
Perhaps I will re-ignite that conversation
Thanks for sharing that, Pat! I was aware of sub-cutaneous velcade being out there, but not that it's PN inducing effect could be mitigated by using it in that fashion. I'll be sure to pass this information along to your "lymphoma cousins" - patients on a discussion list devoted to folks with a rare form of lymphoma, Waldenstrom's Macroglobulinemia, which is related to MM. Velcade is one of our treatments of choice also. Thanks again! Hope the velcade and the transplant works wonders for you!
Lori and John-
It is more convenient. John, physicians in the U.S. are using it "off label." Not sure Canadian docs can do that in your system. But no reason you can't try, right? Pat
Pete-
Great! Spread the word to our "Waldenstrom's macroglobulinemia cousins." Thanks for the kind words- Pat
Pat and others,
In my studies to help my wife's PN symptoms I found that Transdermal Magnesium Chloride helps diabetics reverse PN. We gave it a try and successfully reversed her PN. A combination of spraying on Magnesium Chloride "Oil" and some evenings when there was time, foot soaks in strong Epsom Salts solution.
Her PN did cause pain as well as numbness, but she found the pain worth it to have sensation back in the front half of her feet. It is simple to apply and the foot massage was a relief to her as well.
Though we didn't apply it to her hands, the finger tingling she got went away as well.
Thought you and others might want to try this simple therapy (Mayo and Methodist docs saw no reason not to with her RD VD and VRD treatments). If it works it is worth it, if not, enjoy the foot messages and soaks!
To health,
Steve Jacobson
Good advice, Steve! Magnesium oil is expensive, but fellow patients have told me it usually helps some, if not a lot. I have tried it and it may help... I do take lots of oral magnesium. Doubles as a stool softener for guys like me who also take pain mads which tend to leave me constipated. As you say, definitely worth a try! But I'm not convinced it is a "cure." That said, I'm so glad it worked that well for your wife! Pat
Pat,
I very much appreciate your articles - they have inspired more than a few blogs on my own web page. I have not yet had to endure the anxiety of waiting for relapse, having only just been diagnosed with MM in Jan, but it is something I've thought about and recognize will become a fact of life once my initial treatment is completed. I believe you have the right idea with "hopeful waiting" though. My first doctor wanted to get me into a traditional two drug treatment, followed by a stem cell transplant, and did not offer a whole lot of hope. Fortunately, I consulted a second doctor and was fortunate to get into a clincal study for Carfilzomib. After two cycles, I have achieved a 92% response, with very few side effects. With treatments like this becoming available, there is truly hope - first for a sustained remission, and then for the next best thing to come along in the mean time.
Kevin-
I'm so glad you are doing better now, using carfilzomib! I will share your enthusiasm when I meet with Onyx officials in Chicago in a couple of weeks. You are right--there is hope! But we all need to keep our bodies as strong, and bone marrow as healthy as possible. I have lost several, older friends this past month. Both had their bone marrow give-out and they could no longer take any type of anti-myeloma meds. No meds and death came quickly. So exercise, eat well and take care of yourself. Good luck! Pat
Pat,
I just started on SQ Velcade as well. After her trip to ASH this December, my Mayo oncologist, Martha Lacy, encouraged me to try to get SQ velcade, since I have a grade 2 neuropathy, that has been grade 3 in the past all caused by Velcade. I get my treatment 600 miles from Mayo, at Rapid City Regional Hospital. In my case, I asked the oncology pharmacist about SQ Velcade, he became very interested, researched how it was formulated, and indicated he was willing to formulate it for SQ use. After I discussed it with my local oncologist, Mark Schroeder, he was willing to order it, and I believe I was one of the first myeloma patients in the country to receive this treatment. I have found it has not made my neuropathy progress, in fact I am tapering down on my Lyrica at the present. And the convenience of not having to wait for an iv to be started, drug administered, flushed, etc. has reduced my clinic time. Not sure when we'll think of home injection, though my wife, Dianne, is an RN, and would be very qualified to so so.
Pat, I have been reading your blog for the last year or so, and have gone back and read some of your previous blogs. I have had a six year course with my myeloma (diagnosed May 29, 2005), and have had multiple ups and downs. I was dismayed when you indicated you were in relapse and were heading for SCT (I just had my second SCT in November), and your posting about your wife's support system, or lack thereof, was very emotional for me. I had not shown Dianne your postings before, but we both read your blog, and the very emotional responses from your readers. We both found much to agree with and new thoughts, and we both cried. I don't believe you have posted about how you and your wife have dealt with the issue of her support system since then, but I hope she has found the support she needs. She's been a caregiver for you during your diagnoses and treatment up to now, but her role will be expanded as she helps you through your SCT and your recovery from it.
I debated at great length whether I should go through a second transplant (actually it required a course of VDT-PACE the month before the transplant, which was probably harder than the transplant) However, I decided to go through the treatments, and I tolerated them just fine. Now I am in complete remission, and I had the not really expected privilege of holding my first grandchild! I am so glad that Dr. Lacy convinced me to have this transplant. I hope you have as positive a result as I did.
I'm so glad you are doing well, Greg! I appreciated your kind thoughts and words. Pattie seems to be doing better since we learned my SCT would be delayed. The social worker at Moffitt sounds like she may be able to help. Comments like this help a lot, too! Pat
My soulmate was diagnosed in Feb 2011 MM(StageIII). She had her SCT in early April and today was advised that a second would be required in July. At the same time, she was told she has "residual myeloma". I have scoured all sources of info looking for a definition of "residual myeloma to no avail. If anyone can help provide a definition it would be much appreciated. Pat, Good Luck on your SCT and Thanks for the ongoing info and constant encouragement, you provide great relief to all on a regular basis as we move forward on our journey!
Hello Ted-
I'm so sorry your "soulmate" (and you!) are forced to go through all of this...
I'm not a doctor, but I believe the term "residual myeloma" means exactly what it says... That there is still some myeloma cells present. That doesn't necessarily mean she should get a second SCT right away... Have you gotten a second opinion? Good luck- Pat
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