Mohr’s Myeloma Musings: Plant Your Feet And Stand Firm
Despite being a lifelong Boston Celtics fan, one of my favorite coaches is former Los Angeles Lakers coach Pat Riley.
I know that sounds traitorous to most Celtics fans, especially considering the fierceness of the teams’ rivalry in the early and mid 1980s: Bird versus Magic, Showtime versus Blue Collar, Kareem versus The Chief, McHale versus Worthy.
With all due respect to Lebron James, Kevin Durant, and the rest of the NBA today, those were the glory days of the NBA!
As a young coach during that time, I consumed everything Pat Riley wrote and said.
My favorite work of his was a book written in 1993, “The Winner Within.” The book outlines the stages that teams and organizations go through in order to reach excellence. It is also filled with “Riley’s Rules” – words of wisdom that he has accumulated over his playing and coaching career.
Riley claims the best piece of advice he ever received was from his father, who told him “Every now and then, somewhere, someplace, sometime, you are going to have to plant your feet, stand firm, and make a point about who you are and what you believe in. When that time comes, Pat, you simply have to do it.”
And while, in the big picture of life, our chosen path of treatment as myeloma patients doesn’t equal who we are or what we believe in, at some point in our battle with this disease, we do have to plant our feet and stand firm in terms of what path of treatment we will choose to pursue.
Ultimately, for most of us, that choice revolves around whether or not to have a stem cell transplant.
The Myeloma Beacon has certainly served its readers well in regards to this decision. Columnists, guest columnists, forums postings, and research articles have provided ample food for thought for anyone who has to decide whether to proceed, delay, or completely forego a stem cell transplant.
For me, an avid reader of all parts of the Myeloma Beacon, the information I have gained from this site has been invaluable. The wide range of opinions expressed has caused me to more closely examine what path I will pursue.
For me, the time has come to plant my feet and stand firm in what I choose to do.
I will proceed with the stem cell transplant in June, barring any unforeseen circumstances beyond my control that might occur between now and then.
What led me to this decision?
It certainly isn’t the research or literature. As best I can determine, they are all over the place. Therefore, as is typical with this disease, it very much revolves around individual circumstances, experiences, and philosophy and trust in medical treatment.
In my first column, I shared the fact that I was initially uncomfortable with the watch and wait approach, noting that it bothered me that myeloma cells were percolating in my body and we were doing nothing about it. I wanted to be aggressive, proactive. I wanted to “cut the head off of the snake”, so to speak. And while I grew to accept and even appreciate watching and waiting, no one will dispute the aggressiveness of a stem cell transplant, which is more in keeping with my outlook in taking on challenges.
A prime factor in my consideration was my age and health. Apart from the side effects of treatment that I am experiencing now, I am in excellent health. (I am happy to report, by the way, that the side effects have diminished considerably since my last column).
At age 58, I am at the younger end of the spectrum of those diagnosed with myeloma. While there appear to be diverse opinions on whether or when to have a stem cell transplant, all agree that it can be a physically and emotionally taxing procedure. I choose to undertake that procedure while in good health, because I don’t know what health issues I might face two, five, or ten years from now.
Coinciding with that is the age and health of my wife, who will be my primary caregiver during this procedure. It is my understanding that a caregiver will also be physically and emotionally challenged during this process. I am comforted in knowing that she will be providing care for me while in excellent health.
Relevant, as well, is the age of my children. They are 22 and 18 years old. Next month, my daughter graduates from college and my son from high school. They will be impacted far less by the stem cell transplant experience now than they would be in the future, when it is very possible they could be starting families of their own.
Health insurance has been an obvious factor in my decision. As I complete my 36th year working in education, retirement is very much a possibility for me in the near term. The fact that the out-of-pocket expenses will multiply sevenfold when I move from my employer-provided plan to the retirement system plan has been a factor I could not overlook.
The best advice I can share from my experiences in dealing with this disease is to leave no stone unturned when it comes to health insurance. I was totally unprepared (and shocked) at what I learned as I investigated this.
The uncertainty that surrounds health care in the future was also something I could not overlook.
As a school superintendent, I am directly involved in negotiating our health care policy and premiums with health insurance providers for our employees. After meeting with numerous health insurance representatives over the past six months, I am convinced that major changes in health care are on the way, especially for those of us whose monthly costs of treatments are often measured in the tens of thousands of dollars (or higher!).
It is said that the devil is in the details. I’ll take my chances on the devil I know – our current health care system – rather than one that has yet to be fully defined, may change at the political whim of an elected official, and most likely will be quite different five years from now.
I had the opportunity to talk with three individuals who have had a stem cell transplant. One was a close friend, another an acquaintance, and the third a complete stranger who my best friend arranged to meet with me. All three had successful results, and nothing in my conversations with them convinced me to delay or completely forego the stem cell transplant.
I have an inherent trust in my medical team. Where such trust comes from, I have no clue. It may be due to the fact that both of my parents were nurses. And as Mike Burns stated in a response to Paul Jakubowski’s excellent guest column, “I am not presumptuous enough to declare that, in several weeks [in my case months], I’ve learned more than my myeloma specialist has learned in X years of study and work.”
This disease, regardless of where we are in its progression, forces us to make life-altering decisions. As I indicated earlier in this column, the stem cell decision is one of biggest decisions we have to make. And, as many more enlightened columnists and readers than I have shared here at The Beacon, this disease is such an individual disease in terms of how we all react to treatment that we are all forced to base our decisions on our own individual experiences and circumstances, and not just on accepted protocols and regimens (as patients of other disease are often fortunate enough to be able to rely on).
I hope that, in some small way, those of you wrestling with the decision regarding a stem cell transplant have gained some food for thought through my sharing my decision making process with you.
Whatever you do, plant your feet and stand firm!
Steve Mohr is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of his previously published columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at
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The thing that hit me in your column was age. I am your age and do still consider myself young. Although we were told at diagnosis that myeloma is a disease of older men, our daughter at 32 was diagnosed. She has chosen to hit this disease with full force. I read more and more of young people getting myeloma. Someone who is 29, 17. People in there 30'sand 40's. Our daughter had a transplant 18 months ago. She is doing well on maintenance therapy and is in complete remission. Good luck with your transplant.
Steve,
Well written column. I was one that chose the path of avoiding a stem cell transplant. I was diagnosed when I was 56. I have been in some form of treatment over the 5+ years I have had this disease, but have been in a remissive state for the past 4+ years on a maintenance protocol. The main thing that I point to is that I have not missed any appreciable work other than taking some short days when my treatments occur. The side effects of treatment have been manageable, and I generally feel I have a good quality of life. I have also been very active physically, as you will note from my forum posts about biking.
The main reason I decided against the stem cell transplant is that I reached a CR with induction therapy, and my oncologist said that a stem cell transplant was not likely to appreciably improve the results. Furthermore, even with a stem cell transplant, he said I would likely be on a long term maintenance protocol, which is what I am on anyway. So, in essence, I think I am about in the same place I would have been had I had a stem cell transplant but avoided all of the risks, lost work time, and recovery complications that go along with the transplant.
Ron
Steve,
I was diagnosed at age 44. At the time, based on my readings on the Internet, I thought this was an exceptionally early age for myeloma, but over the last couple of years my own observations, seeing and hearing about others with myeloma at young ages, is inconsistent with what I have read about this disease. I would not be surprised if updated data comes out breaking down the age at diagnosis and shows a significant jump in younger people with myeloma, which leads to the question why?
Great advice on health insurance. Thankfully my out of pocket expenses have been minimal and of no concern, but I am in a HMO and do not have the choice of going to the best myeloma specialist in my area. My doctors are close to me, though, and all have easy access to my medical records, which has been very helpful. There have been a few times when I was hospitalized on short notice for a week or more, and it was good that all doctors and specialist who had been treating me were in the same building I was.
I have been getting what may be the standard therapy and, so far, it has been working great. If my myeloma starts becoming refractory to the available treatments, not having access to the best specialist will become an issue I will need to deal with.
Since I have been following the Beacon, it seems not long ago it was common to do a stem cell transplant (SCT) upfront and early, as this was shown to provide the best results in most people with myeloma. With the improvement in treating myeloma with the “novel” agents that have been developed, it seems more people are not doing SCT upfront and getting good results with just using the agents and postponing SCT till the indefinite future, like Ron has.
I went with doing the SCT upfront because, at the time, I thought it was the best path to take and I do not regret it. If a patient and their oncologist decide not to do SCT upfront, I do see this as being a very viable thing to do based on individual circumstances, and I suspect that this trend will increase in the future. If results from novel agents without SCT can be comparable to those with SCT, makes sense to me to delay not doing the SCT. As more people elect not to do a SCT upfront, we should get more data on outcomes. If someday myeloma can be treated and managed successfully without SCT, as appears to be starting to happen, I do not know who would be against that.
Keep us up to date on how things progress,
Eric
Good for you Mohr-man! Take that weight off your shoulders.
It is completely an individual choice -- thus no need, to explain, justify, or defend to anyone here.
Good luck with your treatment plan and we'll be right here on your "dial", when you come back.
But I still say ... Riley Sux. LOL!
Regards,
To be honest, it never crossed my mind not to have the stem cell transplant, which will be scheduled for July or August. I am 43 with a fractured T4 vertebra and a number of tumors / lesions in other vertebrae and ribs (some are also fractured), and have been off work since early March. I have had an initial regimen of palliative radiation and am now on my second round of chemo. Basically, I can't get back to work until the lesions are gone and the bone treated, with young children there is no choice, I need every chance of a long remission and a normal life for their sakes.
Congratulations on your choice and good luck for the future.
Terri, Ron, Eric and R,
Thanks for your comments!
Terri - I can't help but wonder if the increase in number of young people being diagnosed isn't due to better diagnosis techniques. I am glad your daughter responded well to the transplant.
Ron - Your points are well taken and just go to show how individualistic our response to treatment is. I am amazed to read of your biking activities. There is just no way I could undertake such physical activity based on how I feel on my current regimen, which is not a heavy treatment according to what I have read of what others are prescribed. Again, just goes to show how individualistic our responses are.
Eric - I have followed your comments closely on your experience with the stem the cell transplant as I have made my decision. Your comments on the future of stem cell transplants may very well prove to be prophetic.
R - I appreciate your supportive words! The only time I thought of Pat Riley in those terms is when he was whining about the Celtics rough play, poor officiating, and deplorable conditions of the Boston Garden.
Can't have too much information.
Here is some more ...
My wife had an autologous stem cell transplant 2 years ago. It was mostly very boring for both of us. One thing I would like to share is that, during your stay in the hospital, you will be given an anti-fungal drug. My wife was constantly nauseous because of it. It wasn't until after she was discharged and had stopped taking the drug that we found out that was what was causing her nausea. Unfortunately, we didn't find out until later that there are other anti-fungal agents that she could have taken that may have had no, or milder, side effects.
When you are given the melphalan, you must eat chopped ice for 3 hours to avoid the bad mouth sores that the melphalan can cause. The chopped ice will shrink and slow the metabolism of the epithelial cells in your mouth and throat, keeping them from absorbing the melphalan. The ice is much more pleasant than the sores. Hopefully a graphic description will be unnecessary, but I am sure you can look that up if you need to. I hope you have a good harvest!
Robert
Steve,
I was diagnosed in 2008 at age 58 with multiple plasmacytomas and had my ASCT in March 2010 without any great problems. I certainly remember how scared I was before the procedure, but as with many things, it wasn't as bad as my imagination said it would be. My best advice to people preparing for it is to get in the best physical shape you can beforehand.
I'm doing great for now and get no maintenance drugs except Zometa 3-4 times a year. I wish you and everyone preparing for a stem cell transplant the very best!
Chuck
I had ASCT at Mayo Rochester on February 11 this year. I am 61 years old and at "standard risk". I had little difficulty with the procedure, and was well cared for at Mayo (had two great caregivers, and the good fortune to live at Gift of Life Transplant house for the COLD five week period). I had no inpatient stay for symptom management during the time at Mayo, which is a bit unusual. I was back to work half time two weeks after returning home, and I am back full time now (college prof).
The most challenging part is day +5 to day +12 or so, when the immune system is at its lowest point. I was pretty lethargic those days. And it is difficult to eat when you don't really want to, although my appetite came back quickly when I got home! Overall, despite my very good response last fall to Revlimid-dexamethasone induction, I am glad I did the ASCT. Being "aggressive' up front was the right choice for me. I greatly respect those who decide otherwise. I think we all wish there was better / more science to inform our treatment decisions.
I go back to Mayo in early June for bone marrow biopsy. We'll see where we go from there. I think my doc may be inclined to watch and wait rather than to start maintenance, if my numbers are good. That makes me a bit nervous. But we'll cross that bridge when we come to it.
Best of luck, Steve. Thanks for the thoughtful column.
Steve, good choice. I went though it last year. My advice is listen to your body, and hit that call button if needed. I feel I was very lucky only having 4 bad days. I was in for a total of 17, my wife was my caregiver also, my crutch. I had mine last June. Feel great, saw my NP last month and she paid me a great compliment. Since I had no issues, she said that I was a boring patient. I thanked her for that and said I want to continue to be boring.
Good Luck ! Just remember - the nurses and staff are there to help and support you and your wife.
Steve,
You just wrote my whole myeloma story with this article. I, like you, have decided to attack this disease with everything I've got. I go in for my harvest in two weeks and attack, a week after a rest week, with an ASCT. I do not want to be dictated to by this disease without doing some dictating on my terms. Whether it makes any difference in the long term outlook, only time will tell. But we both seem to be on a similar journey. Good luck, don't second guess your decision, and always stay on the attack. Because this disease doesn't give us any mercy, none is extended either.
Randy, Jack, Richard, Chuck and Robert,
I appreciate your comments, insight, advice, and words of support -- especially the words of support. Hearing your experiences makes me feel confident in the decision I have made. Having said that, I greatly respect the decision of those who choose another route of treatment as our decisions are all based on personal experiences.
I had my 3 month check up today -- ironically, 2 years to the day from when I received "The Call" telling me I had cancer. All of the test results won't be back until early next week and most of my appointment was spent talking about the stem cell transplant. My wife and I were heartened by what we heard about the process and what we heard really reinforces what all of you have suggested. That is not to say there won't be some tough times, but, if what my doctor predicts comes true, being off any treatment for at least a year after the transplant, anything I go through in the short term will be worth it to experience that. Time will tell!
Jack - I too hope to be boring patient!
Hi Steve, I am sitting in my bed at Mass General Hospital unable to sleep. I am on day Minus Two of my stem cell transplant. I have read comments and suggestions about treatments and greatly appreciate what others are doing. I was told in August that I have multiple myeloma at age 67. I have had 8 cycles of RVD treatment and now the stem cell procedure. I have developed a moderate case of peripheral neuropathy. Can anyone give me some advice on how to handle it? This has been my only problem with MM. All the chemo has not bothered me much except a rash developed from the Revlimid, and that went away after the dose was lowered to 20 mg on a two week on and a week off cycle.
I, too, would like to be a boring patient.
Hi Steve,
Those Celtics-Lakers finals were the best basketball I have ever seen.
Great column. I have a list of articles and other resources I send to newly diagnosed patients that I may "meet" in cyberspace, and this one makes the list. The uncertainty of the future of healthcare is a real issue - someone could write multiple columns on that issue! All treatments have upsides and downsides, so it is important that a patient is "at peace" with the decisions they make. Hopefully the auto will provide you with a long term drug free remission.
Mark
Good Morning Steve P,
I too developed a moderate case of peripheral neuropathy that was intensifying in degree with each cycle. My doctor prescribed duloxetine [Cymbalta] (60mg daily) and, while it hasn't completely erased the condition, it has been effective in certainly making it tolerable. I have heard that exercise and being physically active can also ease the conditions. I will be starting an exercise regimen in preparation for my stem cell transplant as my doctor is adamant in his belief that being in the best physical shape one can greatly impact your experience with the transplant. I am interested to see how my newfound commitment to exercise impacts the peripheral neuropathy that I still experience.
I hope that things go well with your transplant!
Good luck, Steve, with your upcoming ASCT and all issues myeloma-related! Probably if you are not taking either Revlimid or Velcade in the near future (I think that RVD was you induction?), your PN [peripheral neuropathy] will diminish. Others have commented that swimming is a good therapy for neuropathy. I noticed that the neuropathy from Velcade was more long lasting than that from Revlimid. I can still feel a bit of neuropathy in my feet from the Velcade, but it is not in any way disabling or even painful.
We don't have the option of VRD induction in Canada on our public health care system, but I did have both of those drugs sequentially, before and after the ASCT. Since you mentioned that you might not be on a 'maintenance' therapy (i.e., assuming that the ASCT goes well!), I wonder if the current thinking is that taking both R AND V at once is the equivalent of taking them one at a time?
I don't envy the Americans having to negotiate their complicated system of insurances for health care. On the other hand, you do have more treatments available now to those who are able to obtain them, than we do yet.
Happy Easter to all!
Hi Steve P,
Sorry to hear about the peripheral neuropathy (PN) that you're experiencing.
There are a number of discussions in the Beacon's forum with tips related to dealing with PN. Here are a few that you may find useful:
Preventing peripheral neuropathy?
Peripheral neuropathy
Cold or hot water for peripheral neuropathy
Be sure to page through most of the postings in each discussion thread, as some of the more detailed postings -- including some from myeloma specialists -- occur later in the threads.
The Beacon also published a series of articles on peripheral neuropathy a few years ago that you may find useful:
Drug-Induced Peripheral Neuropathy In Multiple Myeloma Patients – Part 1: What Is It And Who Is At Risk?
Drug-Induced Peripheral Neuropathy In Multiple Myeloma Patients – Part 2: Treatment
Drug-Induced Peripheral Neuropathy In Multiple Myeloma Patients – Part 3: Prevention And Future Directions
Finally, if you really want to dig into the issue of peripheral neuropathy and myeloma, you can go to the Beacon's topic page for the subject:
Peripheral Neuropathy - Multiple Myeloma
or do a search from the main Beacon search box, or the forum search box, using the keywords "peripheral" or "neuropathy" (without the quotation marks).
Best of luck to you!
To anyone, I pass along what was passed to me ...
Velcade (induction) was the source of my Grade 2 peripheral neuropathy (2 years ago), even with subcutaneous injections and reduced doses.
Gabapentin (Neurontin), Cymbalta, and Elavil are the usual RX response to PN symptoms. All are "off-label" uses, by the way.
Gabapentin did nothing for me (upper limit is 2700 mg/day); haven't tried Cymbalta.
Low-dose Elavil (refreshingly cheap old drug) taken at bed time has really helped me -- especially when I need to get comfortable to sleep.
The cramps (due to Revlimid) and twitching go away pretty quickly. I take it every 3 days, when I need to.
OTC potassium supplements (low dose) and diet also help with cramping. 400 mgs of calcium daily. Plenty of vitamin D (400-600 micro units?).
Foot warmer (one pound of long grain rice in a sweat sock, heated for 2 minutes in the microwave) also helps with the feet/leg problems of PN --especially at bed time.
I've personally never tried brown rice in the sock -- too "healthy" for me? LOL!
Good luck.
Enjoyed your article Steve. It has helped me to come to grips with the fact I have to decide what next and embrace my decision. I start mobilization for my auto transplant this week. Deciding on the auto was easy, I must now now decide on whether to proceed with an allogeneic transplant next. I am high risk but afraid of the allogeneic. You pointed out factors everyone needs to consider and this has reminded me why I made some decisions I did, but have been letting fear try to derail me. Time to plant my feet and stand firm also.
Best of luck to you.
If you look at the Univesity of California at San Fancisco web site and search for myeloma and neuropathy you will find the following:
'there is a cocktail of medicines to try to prevent neuropathy, and we use alpha lipoic acid, L-Carnitine, vitamin B6. Other things people have tried are the fish oils or the cocoa butter rubs to the feet and acupuncture, and I think all of those actually work quite well in individual cases.'
I can personally vouch for Vitamin B6 and lipoic acid, as I used it during my year long treatment with Velcade infusions. It worked well with essentially no neuropathy. I continue using it today on my Revlimid regimen with the same success. We take a lot of pharmaceuticals in our myeloma battle, so some vitamins and neutraceuticals is a refreshing change for me, as those mentioned actually relieve some of the side effects of our treatments.
For those interested in the debate about early ASCT vs. holding off, here is a link in the forums. With expanded use of novel agents, the need for and whether or not SCT actually helps or just adds a level of unnecessary risk, has become a hot topic.
http://www.myelomabeacon.com/forum/looking-for-feedback-on-recommended-first-round-treatment-t1502.html
Ron
Steve,
I have a slight case of neuropathy, taking Cymbalta for it, exercising more (and yes that does help). I went thought the clinical trial, came out of my ASCT rested until September, then started my RVD treatment for 8 weeks.
I went back to your first article. You are having your ASCT done at the same hospital as I did. You will be in great hands. If you need anything and the nurses and pca's can't find it, ask for Joe. Joe is a pca and everything else. If your wife wants to spend the night and wants a roll away bed, ask Joe.
Also hopefully the food on demand is better. It started the week I checked in, fairly good the first 7 or 8 days, but the same menu, so it started to get old. Big factor: EAT! Something. For a few days, frosted mini wheats and crackers were the best thing in the world. And get out of bed try to walk every day outside if you can, or around the ward, nice courtyards around.
Wear your own clothes. That is a positive thing too. Gym shorts, sport shirts, and your favorite shoes. Don't wear hospital issues unless you have to.
Take some personal things with you. Pictures are good, games, notebook or IPad. TV is ok depending on what you like.
One other thing: You will get ice chips (aka snow cones) about 15 - 30 mins before chemo. Have to eat that for 6 hours. They do have favors too, if I remember correctly. Eat as many of the ice chips as you can. It will reduce the chance of mouth sores.
Thank you so much for sharing your experiences from your ASCT -- especially the little "nuggets" of advice on how to make the stay more comfortable. It is comforting to know that your experience there was a good one, but that is not surprising, as I have nothing but great things to say about the care I have received there as well. I hope things continue to go well for you in the future.
@Terri - I was diagnosed when I was 32, did Velcade and high-dose dex and cyclophsphamide as induction, and then a stem cell transplant about 6 months later. I was not in CR before my transplant, but a few months after, my numbers dropped to undetectable levels and have been there for almost 4 years now! I'm 36, back at work full time, and living a pretty normal life for a 36 year old
RE: PN - My feet had it bad. On the one hand, I could not feel things touching them (like the tests in the doctor office), but, on the other hand, walking on them felt like I was walking on glass shards. I took Lyrica [pregabalin] for a few months and it helped settle it down, and going forward I find I have to keep my feet warm all the time and or else the PN bothers me. So I wear moccasins in the house all the time, and have to wear socks in bed (even in summer lol)
Hey Steve,
Sounds like you've thoroughly weighed all the data relative to your condition and have made your decision. The fact you feel comfortable with it is a good thing too. It's a difficult decision when no one actually knows what is truly the best treatment for any given patient. Still, here we are ... all of us ... trying our best to navigate our respective healthcare systems and to support each other.
Also, regarding PN ... I too have bortezomib-induced peripheral neuropathy (BIPN) and have tried prescription drugs (the usual), accupuncture, massage and OTC supplements. Nothing has worked much except Lyrica, which I'm trying again to see how it works the second go-round, having stopped its use about 6 months ago. After two weeks at 75mg twice per day, it's helped just a little with the burning ... tingling and numbness is still there. I've been considering Cymbalta, as it's the only drug that has shown in a study to actually benefit BIPN patients. But, to tell the truth, I'm a bit leery of taking any SSRI type drug. How long have your been taking it? Any side effects? How much has it helped -- 50% reduction in pain?
I would add that there is also a Phase II or Phase III study at Mayo with a electrical device called "Scrambler Therapy" that looks promising. http://tinyurl.com/lhb9ob5.
Finally there are variouus chiropractors who make claims of dramtic improvement in PN with their proprietary methods -- if you want to risk it!
Best of luck to you!
Steve C.
Great article Steve! One look at all the comments here, and it's easy to see that your message resonates with many patients and their caregivers! I'm sending lots of positive thoughts your way and hopes for a complete response. As we say here in Texas, "Keep strong like bull"!
For those of you contemplating stem cell work, some chemical updates:
* * * *
(Reuters) - Spectrum Pharmaceuticals Inc said it expects to seek U.S. marketing approval for its blood cancer drug in the third quarter, after the treatment was shown to be safe and effective in a key mid-stage trial.
The company's shares rose up as much as 7 percent on Wednesday.
The injectable drug, Captisol-enabled melphalan, an improved form of common chemotherapy drug melphalan, is being tested in patients with multiple myeloma undergoing stem cell transplants.
Roth Capital Partners analyst Joseph Pantginis said he expects CE-Melphalan to receive full approval next year.
"CE-Melphalan would fit nicely with (Spectrum's) salesforce's current hematological bag," he said.
Steve, thanks for another excellent column! You've done your homework and have well thought out reasons for making the choice you did. I think that's one of the most important things for anyone facing the decision of whether to do an SCT or not - learn as much as you can beforehand so that you feel like you are making as educated of a decision as possible.
One myeloma specialist explained to me that we are in a transition phase in how myeloma is treated. As novel agents improve, we are moving from a period where SCT is the standard of care into a period where most patients will be treated with targeted therapies and SCTs are rarely used. While we are in this transmission period, which he predicts will last another decade or so, the decision about whether to do the SCT is one that most myeloma patients wil face. Your column here and Paul Jakubowski's column that you linked to should be required reading for all people facing the SCT decision, as the two columns are both well reasoned, but come to opposite conclusions on this question.
Glad my comment to Paul's column resonated with you. Although I'll never know anywhere near as much about multiple myeloma as my doctors do, it is still my responsibility to learn as much as I can so that I can ask intelligent questions, be a full participant in the decision-making process, and be comfortable with the decisions that WE make. And, while the decision to do an SCT or not is an important decision, the treatment decisions that we must make continue to come long after that one. Dealing with multiple myeloma is a marathon.
Best of luck to you in your SCT and to the other folks who have commented here about their upcoming SCTs.