Pat’s Place: Decision Made - I’m Going To Transplant Again
I’m fond of saying, “I still have a number of myeloma therapy options, but none of them are good.” The last part is a reflection of investigational work I’ve done speaking with a number of myeloma experts I know.
For two months, I’ve promised to share which direction my lovely wife, Pattie, and I have decided to go in terms of my next treatment. After six months of pros and cons lists, conversations with readers, family, friends, and other myeloma survivors, we’ve made a decision. We were emboldened after shifting through piles of therapy and clinical trial options. In the end, the decision was easy.
I plan to undergo a second, modified autologous stem cell transplant.
Here is a bit of background information: Despite a dropping M-spike (now a barely detectible 0.1 g/dL), I have been experiencing more bone pain than usual lately. That’s disappointing, because the doublet of Pomalyst (pomalidomide, Imnovid) and dex had surprisingly put a lid on the pain I was enduring late last fall.
My former myeloma specialist had argued that I had become a nonsecretor, which means that my M-spike was fading and no longer an indicator of how my myeloma was progressing. My new specialist at the Mayo Clinic here in Florida agreed.
So what’s a guy to do? Since I’m still feeling pretty good, I decided to fly up to the University of Iowa for a second opinion from an experienced myeloma specialist who might look at my case differently.
He put me through rigorous testing, including a PET scan, that proved my myeloma was still active, despite my encouraging M-spike.
I’m holding the results in my hand now. It’s clear that Pomalyst and dex had smothered active lesions found in my last PET scan seven months ago. But now new ones were back – several next to the older ones, one new one in my left femur, and an extramedullary (outside the bone marrow) plasmacytoma in the lymph nodes behind my groin.
The specialist in Iowa reviewed all of the test results and recommended I undergo a modified autologous stem cell transplant, using a combination of thalidomide (Thalomid), Velcade (bortezomib), and dexamethasone (Decadron) before, during, and after the transplant. I would then start a beefed up maintenance regimen one month after my cells were infused.
There was one unexpected wrinkle, though: He wanted me to try and harvest stem cells, even though I still have between 4 and 5 million on ice at the Mayo Clinic in Rochester, Minnesota.
“Pat, we’ll switch your therapy to Kyprolis, Cytoxan, and dexamethasone for three months. Dropping Pomalyst will make it easier to harvest cells later.”
“But doctor, Pomalyst is what’s working!” I protested. “But it isn’t working,” he responded adamantly. “Your lesions are getting worse, which proves that Pomalyst is no longer effective.”
Hard to argue with that!
I also had some genetic testing done. So what did the results show?
“Those results aren’t back yet,” said the specialist quietly. “But I don’t think it matters. Your biopsy results only showed 1 percent plasma cells; they couldn’t collect enough to run a full genetic panel.”
Considering I have had both sides of my hips radiated, I wasn’t surprised. He suggested I get a biopsy in my sternum after I got home. That sounded fun!
I left Iowa more confused than ever. Most everyone, including various other myeloma experts I had spoken with, had advised me not to transplant.
I wrangled an unscheduled meeting with my myeloma specialist at home the week after returning from Iowa. I explained how I was intrigued by the modified transplant option, but I didn’t want to be that far from home.
My doctor surprised me. I expected him to argue for the incremental approach (my words; I believe the word doctors use is sequential), tweaking different drug combinations to help keep me alive. Instead, he jumped on the transplant suggestion, recommending I do it! “Go get the transplant, then come back here, and we’ll implement the consolidation and maintenance therapy recommendations.”
“But doctor, can’t you do the modified transplant here?” I asked. “I’ll lean on my insurance company and try to get Mayo approved as a transplant center for me.”
“No, Pat,” he answered. “Outside of a clinical trial, we can’t deviate here from high-dose melphalan only.” Really? That was disappointing.
My medical oncologist also thought it might be a good idea to pursue the modified transplant option. However, both doctors agreed it was “long shot.” My doctor at Mayo even went as far as to give it between a 20 to 30 percent chance of success.
Pretty low! My head was spinning. Now I was really confused.
Still, I now had four myeloma and transplant specialists telling me, “No! Don’t transplant.” My first transplant failed. Why would another work now?
Because we’d approach it differently, adding additional drugs before, during, and after infusion of high-dose melphalan (Alkeran), and later my own stem cells – over ten million of them (!), if my Iowa doctor has his way.
Why couldn’t I let the transplant option go?
Honestly, because both of my local doctors implied I might not be around for much more than a year. My doctor at the Mayo Clinic faced it head on. He reminded me that, even if a new drug (or drug combination) works, it won’t work for long. “You know the stats,” he said, quietly.
On the pro transplant side, I have spoken with a number of patients who love the Iowa myeloma specialist so much, they followed him from his previous treatment center to Iowa. Both the myeloma specialist in Iowa and my medical oncologist feel the second transplant is a long shot, but they are willing to give it a try.
I don’t want to transplant. I don’t want to spend what could be three months of the last, best year of my life making myself sick. Pattie and I had previously decided that I would go see a new myeloma specialist who specializes in the sequential treatment approach. I’d try Kyprolis (carfilzomib), Cytoxan (cyclophosphamide), Doxil (doxorubicin liposomal), thalidomide – anything to help keep me alive long enough for new immunotherapies, like elotuzumab and daratumumab, to get approved. Ixazomib, SAR65084, and ARRY-520 shouldn’t be far behind.
Yet it haunted me. My latest consult with an experienced doctor at the University of Florida caused me to pause. He was very concerned about my new extramedullary plasmacytoma. He recommended an even more aggressive course of action; another doctor that wasn’t optimistic about my future.
Out of the blue, the specialist in Iowa called me last week while Pattie and I were walking, and it changed everything. I remembered why I liked him enough to fly up in the first place. He reassured me that the transplant and other therapy he planned would resolve all of my active myeloma lesions. He added that almost 50 patients had previously taken the same treatment approach and were all still alive. “Ninety percent chance of success!” He said. He couldn’t tell me how long the transplant would work, but at least I’d be on aggressive maintenance and have the myeloma back on its heels.
In the end, Pattie thought it was a good idea. We discussed ways she could work and take care of our dog, cats, house, and pool at the same time. We’d have someone come to help – easy to do when you live across the street from the beach!
We made a new, final decision: I would fly up to Iowa for six weeks, harvest stem cells, and do the second transplant.
In the end, the choice was easy because it would shut down my active myeloma, thereby giving me a wider window to try a number of new myeloma therapies over the next couple of years. Two years never sounded so good!
Feel good and keep smiling!
Pat Killingsworth is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of all his 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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It sounds like you made a good decision. It would be an easy decision for me. If 4 well known, so called "myeloma thought leaders" were in agreement not to do a certain therapy, that is definitely the one I would do!
I will be rooting for the Badgers tonight.
Pat, what convinced you to select Mayo over Moffitt after going to Moffitt for so long? I'm beginning to wonder if it's time for me to make a change. I don't like feeling like my plan of care is on "auto-pilot."
Pat, as I mentioned in your last post, I live in Iowa, one hour from Iowa City, and have had the double stem cell transplant at U of I hospital. If you need any help navigating the city or advice on places to stay or anything, let me know! I'm still on maintenance therapy, 2nd year after the transplant. One thing I would suggest that I did, plan your transplant (being inpatient) when your doctor is on his hospital rotation so he will see you every day while you are in the bone marrow unit. My doctor at Iowa is seeing me now every 3 months.
Best wishes for a successful outcome!
Pat,
Stay strong my friend. Your columns are so wonderful and shed light, and hope, for so many myeloma travelers along this unchosen journey. If it helps at all with offering hope, I am approaching my 20 year birthday for diagnosis and my 7th year birthday of transplant #3. I, too, am a nonsecretor. I will keep you both in my prayers as you travel this MM journey fighting the dragon.
Great column. I am impressed with the thoroughness you and your wife used in sorting through the easily overwhelming options, choices, opinions. And as always, thumbs up on your attitude.
How difficult this decision must have been for you and Pattie to make, and what a relief it must be to know your plan of action. Wishing you lots of good health and successful treatment. Hugs to Pattie too - y'all hang in there!
Pat,
What a hard decision you've had to make, but it seems to be the right one for you. Along with Deborah Haas above, my sister lives right in Iowa City 5-10 minutes from the hospital. If you or Pattie need anything while you are there, you can call on her. I'm sure that she would let Pattie stay at her house if Pattie flies up to visit during your time in Iowa.
My sister has a couple of friends who have had transplants with this doctor and are doing well.
All the best to you and Pattie with this latest twist in the road,
Nancy in phila
Wishing you all the best with the second transplant, Pat! It sounds difficult, but I know that many people have had two of those. Hope that the new immunotherapies would also be approved so that you could try those if you need to. You list four of them in this column, which is hopeful.
Tough choices, Pat. Sorry you have to face them.
Best wishes for a positive resolution.
Frank
Pat,
Thanks a lot for sharing your decision-making process with us through your columns. You've certainly done your homework diligently.
We'll be thinking about you and rooting hard for things to go well for you.
Mike
It'll be tough but worth it if it does the job!
We are all here for you and Pattie!!
Best to you!!!
Your energy to explore your options as you have done, in the face of all the difficulties presented to you, is inspirational. I really hope you get a great outcome and monoclonal antibodies await you when you need them.
Great article Pat. Thank you for illustrating your decision making process so thoroughly. You are blazing a trail for those of us behind you, and we appreciate you sharing it with us.
God Speed!
Aloha
Tom
Thank you for be so open and honest with us, Pat. I don't know what to say to you and Patty. Meditation helps me if my body goes to rough treatments, in a way that I try to take a distance from my physical self and just observe every inch of me fighting the mm. You and Patty form an amazing couple, please beat the odds.
Pat,
Tough choices, but you seem to be able to think through your options logically. I just had breakfast with an mmer of 22 plus years and four transplants. I think you know him. He is a testament to the success of conventional mm therapy. Go for it and good luck.
Household projects this morning. Pattie and I just finished walking Finnegan on the beach. Mid 70's, sunny, breakers lightly sliding up the hard sand. I just want to be normal; do normal things. Bet most of you can relate ...
That's the part I dread most about a transplant. Not the diarrhea, fatigue, and (hopefully not as bad as last time) nausea. It's that I'll be a full time patient for six or eight weeks.
I don't write about it much, but the spiritual side of it all shouldn't be discounted. After prayer and reflection, this just feels like the right thing to do. Beats flipping a coin!
Pat,
I consider you a trailblazer and am watching this all very closely. We all are likely going to face the same decisions at some point. I feel so grateful that you have taken the time to share your journey so we can all learn.
Thank You
Ron
Hi Pat,
I wish you well and a fast recovery.
Regards,
Mary Ann
I was wondering if you'd be eligible for any of the CAR T cell clinical trials?
Thanks for sharing your thought process that we may all have to go through at some point. Good luck to you and your wife.
Pat
Thank you! As others have mentioned, your process is so inspirational. Statistically, I will be confronted with the same decision some time within the next 12 months or so. My SCT 23 months ago was such an unpleasant ordeal that I had told my doctor and my wife that I would not consider another one.
The hallmark of an inspirational writer / thinker is that they cause others to reassess their mindset. You have clearly accomplished exactly that. From many of the comments, it does not appear that I am alone in that perspective.
Love and Aloha to you, Pattie, and Finnegan.
PS, you probably already know this, but just in case ... don't forget what a miracle lorazepam is against nausea. Nothing else I tried worked, especially 1/2 doses more often.
Lorazapam (Ativan) was the only thing that helped my nausea, too, Daniel! I know, I know; hate thought of another SCT. But sounds like yours worked almost two years? I will go through another gladly for one year at this point. Figure that's a year I wouldn't have otherwise. T cells? My issue is a low M-spike and practically normal free light chain ratio. No, best I can tell, I don't qualify for 9 out of 10 trials. I'm thinking in a year or two that's when I do the trial thing. Its going to be REALLY hard, but I think I'm up for it – at least I feel that way now...
Hi there Pat,
Yet again you continue to teach me as I watch how you and Patti guide us through your decision making process. I, too, will be there one day. Have just relapsed and am on CyBorD protocol every week for 5 months. It is manageable to date.
I wish you every possible good outcome from the transplant, Pat. When done, there may be more options for you coming down the pike. I am betting on 2 years remission, just because anything is possible.
All my best wishes many gentle hugs and your strong warrior mind. Our love and support to Patti through all this.
Happy Happy Easter to you both. May Sun, blooming trees and flowers and strength be yours.
AND YOU MAY FIND,
SPRING HAS LEFT,
WINTER BEHIND,
Your options seem very limited. For the doctors to recommend a second transplant after the first was unsuccessful is not very assuring. I had my transplant in 2009, and have been myeloma-free since. But I have gotten pneumonia four times and small pox of the eye four times. How many times can we survive pneumonia? I have been taking Revlimid, which has kept my WBC in the 3.7 range, except the last time I got pneumonia, where it went down to 1.7. That's cutting it close.
There are so many new drugs to use in our battle to survive this nasty bug, make sure your doctor runs through all of them before a transplant.
I have a strong premonition that you will do fine.
Best regards,
Jack
God bless you Pat. You lead where others fear to tread and your courage and positive attitude are an inspiration to all. You trailblaze the new therapies and give us hope and faith. I wish you the absolute best and a speedy engraftment and speedy recovery. Godspeed
Hello Pat, I love your column and your details, facts, and honesty. I am a strong believer in prayer. I will be praying for you as you go through this tough time.
I had my transplant three years ago, and I swore that I would not go through that again. But, like you, if the time comes that I, too, need a second SCT, I would like you choose to go through it again. All the best, you will get through this.
Thank you, Pat, for all your descriptive columns and especially this one. I had my first BMT last October and am now on Revlimid maintenance. M-spike only 0.1 g/dL (0.5 immediately before), but I have more bone pain than before the BMT process began. Until reading your column, I had no idea that the M spike might give a false read to one's health. Thanks for the education!
What a tough decision, thank you for sharing your decision making process. I hope you'll consider sharing information on how this process works for you.
My husband also sees an oncologist in Iowa City. But our doctor had referred him to Mayo for transplant because of his other health issues. And we found he was not eligible for transplant. I do wonder if we may have to revisit that somewhere down the road and would appreciate hearing of your experience. Hopefully you will do your transplant soon, while the weather is better here.
Best wishes to you on this new journey!
Thanks for the update Pat. I learn a lot from your coluns. Best wishes and I will be following you.
Wish you the best for your upcoming transplant, Mr. Killingsworth! Your positivity is exemplary for one and all! Thank you for sharing your stories. Please keep us updated always. We shall keep you in our prayers.
Is it possible your "new" type of myeloma has morphed into a type that is susceptible to melphalan? Maybe the other chemo killed all the myeloma cells with the exception of a few melphalan-sensitive cells, and those are now the ones causing you grief? Just a thought.
Why would you need more cells collected? 5-6 million is a lot of cells, if I remember correctly. Do they lose their strength if on ice too long?
I hope it's ok to say I'm excited for you. You have a well informed plan in place. It's not a Hail Mary by any means.
During my 2nd transplant, I couldn't hold down much for 2-3 days. I was on Ativan, something else, and a patch, but still not holding anything down. Being in San Francisco, I felt safe in asking for Marinol. They said "of course," as if all I had to do was ask. 30 minutes after taking it I felt like a new man. And, yes, it made me pretty high. I'm not one who thinks marijuana cures everything, but without a doubt it is one of the best anti-nausea agents available, as well as appetite stimulator and sleep aid. Those 3 issues are all high on the list for chemo patients.
Love your columns Pat and I think you're on the right path to a nice remission. Happy Easter to you!
Thank you for describing your well reasoned decision, and I wish you all the best. Your intuition, and your trust in your Iowa team, is the most important factor going for you at this point, IMO. Once the decision is made, make the best of it!
Jan
Encouraged to hear of your plan. I don't know if you read the article in March regarding secretory and non-secretory ("Survival Of Nonsecretory Multiple Myeloma Patients Improves Over Last Decade"), but I found this quote interesting:
Overall survival improved in both secretory and nonsecretory myeloma patients diagnosed between 2001 and 2012 compared to the earlier period. However, the improvement in survival was greater in patients with nonsecretory multiple myeloma. The median overall survival for nonsecretory patients diagnosed between 2001 and 2012 was 8.3 years compared to 5.4 years for secretory patients diagnosed in the same time period.
The researchers note that the improvement in survival in the later period occurred during the time when the newer, “novel” therapies for multiple myeloma began to see widespread use. It is not clear, however, why the introduction of these newer therapies had a greater impact on the survival of nonsecretory myeloma patients than secretory patients.
Since you maybe non-secretory now, here's hoping the increased survival time applies to you. Take care and keep the spiritual side nourished along with the physical side
So many encouraging comments! I reread them after returning home from seeing my medical oncologist. Starting a new therapy is always disconcerting. Hearing from so many of you helps a lot! There were a couple questions. First, I like the way you think, Stann! I'm hoping melphalan helps knock-out any extramedullary tumors lurking about. About stem cell collection. The plan is to infuse 10 million to help me recover more quickly--so he can start consolidation therapy more quickly. Sort of a "good news, bad news" type of thing! And yes, I did read about nonsecretory myeloma patients statistically doing better. Why not? I'll take any encouraging news at this point. Prayer? Heck yes! Keep 'em coming! I'll do the same for so many of you that share similar challenges to mine...
Hi Pat,
Not sure if you saw these papers. Basically high dose alkylators with stem cell rescue can reverse some of the damage never ending cycles of novel agents does to the bone marrow and allow for higher treatment levels again. That would be a benefit to doing another auto at this stage.
"Therapeutic options in heavily pretreated relapsed/refractory multiple myeloma patients are often very limited because of impaired bone marrow function. Bendamustine is effective in multiple myeloma and has a favourable toxicity profile. We hypothesized that dose-intensified bendamustine (180 mg/m2 , day 1 and 2) followed by autologous blood stem cell support (ASCS) would improve bone marrow function with low post-transplant toxicity in patients with severely impaired haematopoiesis. We analyzed 28 consecutive myeloma patients, with a median of three prior lines of therapy (range 2-7), who had relapsed from the last treatment with very limited bone marrow function and were therefore ineligible for conventional chemotherapy, novel agents or trial enrolment. Dose-intensified bendamustine with ASCS improved haematopoiesis as reflected by increased platelet counts (median 40/nl vs 94/nl, p = 0.0004) and white blood cell counts (3.0/nl vs 4.8/nl, p = 0.02) at day +100. The median time until engraftment of platelets (>50/nl) was 11 days (0-24 days) and of white cell counts (>1.0/nl) 0 days (0-24 days). At least, a minimal response was achieved in 36% of patients. The disease stabilization rate was 50% while the median progression-free survival rate was limited to 2.14 months. Most importantly, patients were once again eligible for alternative treatments including enrolment into clinical trials. We conclude that dose-intensified bendamustine followed by ASCS is safe and feasible for multiple myeloma patients with very limited bone marrow reserve."
Source: I Breitkreutz et al, ,"Dose-intensified bendamustine followed by autologous peripheral blood stem cell support in relapsed and refractory multiple myeloma with impaired bone marrow function," Hematological Oncology, March 2015 (link to abstract).
"Our analysis indicates that salvage ASCT at late relapse is feasible and associated with a 6 mos.’ additional PFS interval but also contributes to improved hematopoietic function. Pts. may thus tolerate further conventional lines of treatment what is suggested by an OS of 30 mos. In addition, ASCT offers a substantial treatment-free interval when compared to either “next generation” novel drug. In this series, unfavourable cytogenetics were associated with a trend for worse PFS but not OS outcomes, meanwhile being double refractory was linked with clearly inferior OS. Interestingly, median duration of storage of their autografts of 52 mos. (range, 1 – 154) did not impair engraftment after salvage transplant."
Source: S Streifler et al, "Third Autologous Salvage Transplant at Late Myeloma Relapse Is Associated with Favourable Overall Survival and Contributes to Improvement of Exhausted Bone Marrow Function," ASH 2014 annual meeting abstract 3988 (link to abstract)
Had two (tandem) ASCT procedures at Northwestern Hospital transplant unit 6 months apart with an outstanding myeloma specialist. Has me in CR. Severe nausea on the first one was terrible. Till they prescribed Haldol 0.5 mg. Total miracle drug for me on the nausea. Stopped it right away. Being a pharmacist, I had never heard of that off label use before and looked at them kind of strange when they suggested it. Asked for it right away on the second one with very little nausea. But, hey, it worked fantastic.
My mm specialist trained at Little Rock and he collected 28.6 million stem cells in 3 days from me. He will use the multiple ASCT's again if needed. He believes in hitting it again if need be, so I believe your approach will give you a real fighting chance. I told him to keep me alive as long as possible till these newer treatments can get approved. So far so good.
Keep battling Pat. Many of us are following your progress, and you are breaking new ground for others to follow and consider options for themselves down the road.
Pat and Pattie,
I've been following your journey for a long time. Among all your wonderful qualities, you've shown us that the most important component of facing this disease is to be our own advocate. Take an active role in your care, do the research, ask tough questions, get second and third opinions, insist on more tests and/or different therapies, get copies of your medical records, graph your results, and so on.
Please know that we are ALL in your corner, and our strength in numbers will give you comfort in the days and weeks ahead.
Hello, Pat!
Thinking of you and wishing you all the best always - 100%! Thank you for sharing your decision-making with everyone.
SB
Hi. you say your M-spike was minimal and you are a nonsecretor. Can you share your remaining blood tests - IGG, IGA, IGM and your kappa and lambda free chains?
Helpful, Mark. Yes, I am hoping that my second transplant mimics the first in the sense that my first hit what I call the "reset button." I believe doctors refer to it as re sensitization. In other words, some of the drugs that had stopped working before transplanting now work again. If I'm reading the report you passed along correctly, that's in part what they're referring to.
Sue and Sylvia, appreciate the kind words and glad I can help! Jim, the other values you list are all within normal ranges; free light chains a bit high but ratio much lower than I would need to qualify for most clinical trials.
Thanks for the update Pat - I know how hard some of those decisions you face can be. I hope the transplant gives you many more years to be able to walk along the beach with Pattie.
Thank you for sharing all this information. I also find especially interesting the clinical trial input on the repeated ASCT. I had wondered myself why we could not collect more cells from patients after an initial ASCT, and it's great to see someone with authority is thinking in the same way.
You will be in my prayers. I agree with you and your wife's decisions, and I would be following the same steps. After watching the PBS mini-series on Cancer, the Emperor of Maladies, I recall that many positive results have been obtained because one specialist had an out-of-the-box approach and refused to give up on it.
Your willingness to share your experiences is of great benefit to me, and you do have a wonderful style of presenting them. Thank you, thank you. And here's to the many more walks along the beach with Pattie
Good Luck and stay strong.
Doing yard work together today. Cool breeze off the ocean; can hear the breakers if you stop and listen. Doesn't get any better than this!
Hi Pat, When I posted my first comment, I wondered whether I should mention the circumstances of my mini allo. I didn't at that stage (obviously). but what can it hurt? Basically my myeloma was resistant to the chemo that was available at the time (2011). I couldn't have a 2nd auto because the melphalan apparently would kill me (my oncologist's words). I couldn't be put into any trials because I had had renal failure (courtesy of the melphalan).
When I had the allo (9 months after the auto). my myeloma was not stable (it appeared to be growing) and my paraprotein was ~4 x higher than any other allos they had performed. They treated me with a very reduced intensity chemo that essentially didn't kill my cells but made the marrow more receptive to the donor cells. I was a chimera for a couple of months, until they gave me a few more donor cells - my donor was B- blood type and I was A+, so for a little while I was B- and A+!. At the end of this month it will be 4 years since the allo.
Take care and enjoy the sea breeze.
WOW, Libby C , that is an amazing story of such a successful mini allo. I didn't realize they did allos like that. Thanks for sharing and continued remission. That should give Pat lots of hope that his will be successful too.
Best, Christina in northern California.
Glad you continue to do so well, Libby! And uplifting news, considering I may be accepted into a new allo trial up in New York...
Hi Pat,
Wow, your decision had to be so difficult to reach considering you couldn't reach a consensus among your consulting physicians. But, I think you will do just fine and I will keep you in my prayers.
What's going on with immunotherapy? Is the measles virus immunotherapy which had been done on three patients at the Mayo Clinic in clinical trial now? Is this something that could be looked into?
Regards,
Larry Gaito
Middletown, NY
Big decisions to make. But if made rationally, then our decisions are always right regardless of the result, because they are made on the basis of the best judgement on information available. And given the thought you have devoted to yours, I'm sure it's right. So just hoping the outcome it the best it can be. I suspect I'll have a second SCT someday, and I don't relish the prospect much, but it is our lot, as myeloma patients, to have to go through some fairly extreme treatment experiences. Strength to you.
Hi Pat,
My husband had multiple myeloma and was able to try elotuzumab through "Compassionate Use" even thought it had not been approved. Please ask your doctor about it. It took about 6 weeks to "jump through all the paperwork hoops" but we made it happen! I just wanted to tell you about this if you did not know. I enjoy your column and wish you all the best always. You take care Pat.
Thanks for reading ... and the support, Barbara, Alex and Larry. This is still all a work in progress. Looking into allogeneic clinical trial, too. On one hand its great to have options. But honestly, none are very good if you take a longer term view. Still...
About immunotherapies and compassionate use. Yes. My understanding is daratumumab will soon be available that way, too. Measles virus? From what I understand Mayo Clinic continues to have dosing issues; how much to give each patient. Seems to vary wildly. All are hopeful. Timing is everything! Just trying to keep myself strong and enjoy everyday. Maybe I'll get lucky! And if I don't? If drug options sputter and/or don't take hold for very long? I've still got some time! A lot more than docs told me eight years ago! None of it is easy, is it? An understatement? Hearing from all of you sure helps – I know many are facing difficult, near impossible decisions as well. Let's hang together all! Strength in numbers?
Pat, You remind us of the need to constantly advocate and stay informed. I was diagnosed three years ago and was scared and anxious. You've helped me by sharing your info and journey. Yes, we all can relate to just wanting to be "normal." Keep on fighting. Your decision sounds solid. Hopefully, it will knock the myeloma into oblivion and will certainly buy time for the newer treatments. Thinking and praying for you and Pattie. Hugs!!!
I'm reminded of when I was a child, standing on the edge of the swimming pool, nerving myself to attempt to dive head-first into the pool. Standing there, more than a bit frightened, the nervousness increasing as I hesitated.... did I really want to do this.... yes!
Do you remember your first dive? ... That euphoric feeling of the springing leap, the adrenalin rushing so fast and seemingly slowing time so that you seemed to almost hang in the air, then slicing through the water surface, the whizzing rush of the bubbles surrounding you, accompanying you down, the cool clear silence underwater, then the bliss of breaking the surface of the pool, the deep breaths in the air and feeling ecstatic?
I imagine you are feeling a bit like that child, contemplating the dive, Pat. Keep focussing on a brilliant, ecstatic outcome. We, your readers from around the world, want you back and writing lots more columns!
Thanks for the pep talk, Sue and Judith! Amazing imagery! Honestly, I'm still standing nervously at the pool's edge. Incredibly beautiful day today; I don't want to make myself sick! But I (and you, too) didn't want to get cancer. Thinking about it, stem cell transplants are like old fashioned chemo, like my wife underwent 12 or 13 years ago. Six cycles of debilitating chemo, spread out over six months. High dose chemo is our equivalent, I guess. Difference is, she could hold on to the hope she'd be cured; a lot easier to endure it all, don't you think. But we do what we have to do. BELLY FLOP!
Pat, saw the news about another auto. I'll be holding you in the Healing Lights (not those that get the deer caught ... LOL) and looking forward to hearing good news.
My SIL who was diagnosed in April 2008, is now very stable and off all (yes ALL) meds after two autos and the allo from 2012. There are combinations that are working for folks and I'm intending this one is doing it for you! (SIL was on a three-week on, one week off Revlimid-dex combo for nearly a year, which ended about 6 months ago. We are so pleased with Fred Hutch / SCCA's treatment plan that has brought him this far.)
Continue to see all your good cells proliferating and I am aligning with great success!
Sandy Banks
Two autos and an allo. Better work! That's a tough road. Inspiring for me. Sort of what I'm thinking. Go through this modified auto, use heavy duty maintenance to keep my myeloma under control for a year or two so I can catch my breath, then perhaps try an allo using modified T cells. Hopefully this will buy me some time. One thing I've learned from long lived survivors; most go through a lot to stay alive.
My best wishes for a quick and uneventful recovery. It takes great courage to sign up for a second transplant. I shall be thinking about you and sending good thoughts out into the universe – especially towards Iowa.
It does take great courage, Katie! I just heard again how doctors usually discourage salvage SCT. But mine has a plan ...
Thanks Pat, always interesting, good luck on the new journey! Wow Libby C sounds like you had a specialist happy to step out of the box a little. Who was your specialist if you don't mind me asking?
Progress toward fundraising goal
for all of 2020:
15%
For more information, see the Beacon's
"2020 Fundraising: Goals And Updates" page