Pat’s Place: Stem Cell Transplant – Let’s Play Two
Last month I promised an update on how I responded to the salvage autologous stem cell transplant I underwent in July. The news is good!
Although some active myeloma remains in the occipital lesion at the base of my skull, and in both hips, all lesions have significantly improved. A half dozen other lesions are clear. And the extramedullary plasmacytoma that was growing in the lymph nodes in my groin? Gone!
I had a 0.2 g/dL M-spike going in and coming out of the transplant. But my specialist feels that’s of no significance because I now have two different kinds of multiple myeloma. The M-spike is a holdover of a former vanquished clone or clones; he now classifies it as a form of monoclonal gammopathy of undetermined significance (MGUS).
More good news: my bone marrow has responded marvelously. My blood counts are all in the normal range. They haven’t looked this good since well before my first, failed auto transplant back in 2011. This is important; my old, tired marrow was having trouble recovering following therapy.
All that remains as a danger to me is a drug-resistant clone locked in my bones. That’s what’s forming the random lesions. Unfortunately, this clone (or clones) doesn’t secrete enough protein for a SPEP test to measure, leaving me at the distinct disadvantage of being a nonsecretor. This makes it difficult to join most clinical trials. More ominously, it makes it difficult to tinker with different drug combinations, since the only way to measure progress – or the lack thereof – is by undergoing a PET scan.
Thus far my insurance company has been persuadable to cover the cost of those scans; my last scan was only two months removed from the one I had right before my transplant. But for how long? They denied the first request my doctor made this past time, relenting on appeal. But I can see the day coming where insurance will only allow one scan every three or four months.
My doctor was very pleased with the results of the first salvage transplant. The first transplant? Yep. He’d like me to come back and repeat the procedure next month. He promises – yes, promises – that the second transplant will snuff out any remaining active myeloma from my lesions. He doesn’t know for how long, but he gives it a 90 percent chance he can do it.
Considering he’s seen thousands of myeloma patients over the years, it’s hard to ignore his advice. My doctor did admit I have a most unusual form of myeloma; he’s only seen one or two other cases like mine in almost 30 years. But another transplant? Ouch! I’m still recovering from this one.
Patients who go to the University of Arkansas Medical Center (UAMS) are all too familiar with this process, known as tandem transplants. These back-to-back stem cell transplants, usually three to four months apart, are standard operating procedure for low- to moderate-risk patients there.
My doctor was a myeloma specialist at UAMS for over ten years, so I shouldn’t be surprised that he is recommending this approach.
So in my mind, the good news from the first transplant deserves an asterisk. But I talked it over with Pattie. Concerns over the lesion in my occipital lobe (if it grows any bigger, it could put pressure on my brain stem, slurring my speech or worse), the fact I’m running out of other drug options, and the difficulty monitoring my response to different drug combinations in real time moving forward makes another transplant our worst, best option.
I do have some advantages going in. No week of testing. Then no week-long stem cell harvest; that really wore me out. I know the drill and the lay of the land. Heck, I already know most of the staff. I’ll be an inpatient this time. No messing around with fancy automated chest ports like the one I had surgically implanted the first time, only to be removed when the lines became infected.
Nope. This time I’ll get a simple PICC line inserted into the inside of my arm. A 15-minute local is all it will take while a tech inserts it. And being an inpatient I won’t need a caregiver around the entire time. My sister, Joan, can drive over from Illinois a few times. Pattie will fly in when I’m ready to come home to help me get organized and safely back to Fernandina Beach on beautiful Amelia Island.
One thing I will change. I’m going to exercise non-stop. I lost five pounds of muscle mass due to inactivity the last time, and I’m already less than 150 pounds. So I’ll be working closely with the physical therapist, doing a lot of walking, squats, and arm exercises using dumbbells.
My biggest challenge: to not look ahead but rather enjoy every day leading up to my second transplant. To appreciate every day I’ve got, and not stress out anticipating the procedure, anxious to “just get it over with.”
Why? Because if it isn’t this unpleasant procedure, it will invariably be something else: a new drug combination fraught with unpleasant side effects; hard hitting VDT-PACE, requiring hospitalization and losing my hair, yet again; participating in a cutting edge clinical trial, or helping test another new, yet unproven anti-myeloma drug.
So, it won’t be easy, but I’m not looking at this like something to put behind me. After all, it’s three weeks away. And although I’m on light maintenance – 3 mg Pomalyst (pomalidomide), 21 days on and 7 off, along with dex, of course – I’m feeling pretty good. I think I’ll take my dog, Finnegan, and go for a long walk on the beach – still wearing my mask, of course. I’ll be away from home again soon enough.
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 .
Tandem stem cell transplant is what I had in 2010. It's extremely demanding physically and emotionally, but in my case it worked so far.
Good to hear you are able to exercise and keep moving. You want to be as strong as you can for what lies ahead.
My thoughts are with you and I feel your energy. Push yourself and stay positive.
My Fight is your Fight!
This is incredibly good news, Pat! I am so happy for you. You went through so much, but it sounds like it was all worth it.
It looks like your courage and determination, combined with your specialist's expertise, was an unbeatable combination.
It can't have been an easy decision to opt for the second transplant, but it appears you are making the right decision. It certainly is a well-informed and thought out one. And your doctor's confidence in being able to make this one an effective knock out punch for that remaining clone sure would make me go ahead, given his successful track record in managing your treatment so far.
I have a feeling you will be successful. You are an inspiration to me and, I venture to say, to everyone fighting multiple myeloma. I hope you feel good about that.
I will continue to pray for you.
Wishing you all the best,
Rob
Good luck with the second transplant, I had one and it was hard enough.
Pat,
The exercise and walks will help you get stronger. Lots of good thoughts going to you and your wife Patti. Thanks, as always, for sharing what's going on with your multiple myeloma fight. Best to you each day.
I think Rob has put into words what I would say to you at this point. You are courageous and resilient and it appears that both you, and your wife, have chosen the best option for you. Enjoy the days before the 2nd transplant; you need that time to bolster up your emotional health. You will once again take one day at a time with a big dose of patience and hope.
I wish you the best and that comes with prayers for a successful outcome!
I appreciate all of your kind words; it means a lot! One twist to my decision: this is salvage (late stage) therapy, not a stem cell transplant shortly after diagnosis or maybe after an early relapse. There is less consensus among myeloma specialists about whether trying something like this is a good idea. Most think, "No." But Pattie and I feel its my best, most aggressive shot. I'm ready!
Great to hear you responded so well to the transplant! The 2nd one will be harder, unfortunately. Down the road, don't discount the possibility of antibodies! They work well. That is the only myeloma "treatment" my husband is on and it is keeping his M-spike at 0.7 for a year now. There are 2 antibodies being reviewed for possible approval around May of 2016. I am hoping you won't need to be on anything harsh for at least that long, and can utilize one of them. They always pair them with Revlimid and dex (sometimes Velcade), but my husband had to stop taking both of those and the antibody continued to work on its own.
Keep up the good fight! And keep wearing the mask!
Excellent news!
I had a tandem done in 2005, as part of a clinical trial I was in. I rolled through the physical side of it; it was the psychological ramifications that I found much more daunting. Based on what I read by you and your attitude, it should be smooth sailing. Here's to a good second one.
Best wishes Pat! We are cheering for you from Calgary. I am sure that you are in good hands, medically, and have a good attitude too, which will surely help you.
Pat - congratulations on your successful response to the stem cell transplant in July. Your experience has been very valuable to us as my husband is at D+34 from his autologous stem cell transplant. Also, I find several similarities between your disease and his. For example, he also experienced extramedullary disease but in his stomach and two plasmacytomas on his spine. As far as we know, the gastric involvement was knocked out with the induction chemotherapy and the plasmacytomas were eliminated with a month of radiation. But like you, he has lytic lesions throughout his major bones. We hope to get the results of the UPEP and SPEP and bone marrow biopsy this week.
There are several things you mentioned that I would like to explore. You may have posted them before, but what are your chromosomal abnormalities? Like you, the doctors at MD Anderson said they had not seen my husband's before. He has 46,XY,t (1;4), 12q-, 18q- [8] /46,XY[2].
Because of all these factors, extramedullary disease and chromosomal abnormalities, my husband's multiple myeloma is also considered "aggressive." His stem cell specialist suggested that he might get an allogeneic stem cell transplant when he relapses. We will be watching your progress with great interest even though your tandem transplant will be an autologous stem cell transplant.
We wish you the best on your upcommg procedure and will look forward to your updates.
Good news about the antibody therapy working for your husband, Monica. Yes, that's the plan. Buy some extra time using "nuclear option," and go to other therapies I could try now, then.
Thanks, April! Glad your tandem went so well.
And Nancy, I'm going to hold on to the image of my friends in Canada rooting for me!
Patty - Allos can be so fraught with complications. Maybe consider doing a modified auto next time like I did, where other chemo is added to standard melphalan. Safer. Maybe you don't get hope for the brass ring of a decade or more myeloma free, but most figure that's only a one out of five thing. Complicating things, my understanding is allos tend to work best when done early.
My cytogenetics? I know I'm a 11;14, but last 4 BMBs they've tried didn't find any myeloma cells to test! Clear, clean marrow. Go figure ...
Pat,
You are an inspiration. I have been following your progress for about a year. You have given hope & education to a lot of us. I wish & pray for the very best outcome for you. Thank you for sharing with us all. God Bless.
Pat,
You gave us some great advice after your last column (meds to try for my husband's severe nausea with chemo). He too is now resistant to all novel therapies. 5 weeks ago he underwent D-PACE (no V or T because he has already failed them). He spent 6 days as an in-patient at Mayo, and 3 weeks being followed every day or two for 3 weeks after (just like after transplant). He PRE-medicated with anti-emetics and it did the trick! He never vomited, and never developed any infection or fever. He finds out tomorrow when they are doing the next round (in the next week or two). After that, they hope to get him in a Daratumumab expanded access trial. I just wanted to let you know, should you need D-PACE in the future, his round went well and was WAY better tolerated than his auto transplant!
Thanks for the kind words, Dottie. So glad I can help. And Marianna, even happier your husband responded so well to D-PACE--and that his nausea improved! I'm already planning my preventative strategy as the next trip to my transplant center approaches. Few things worse than being nauseous for an extended period of time, right?
So happy for you Mr. Killingsworth! Great news about the first transplant. I wish and pray the second one turns out equally good, actually even better. You have lots of prayers going your way. May God bless you!
How can I lose with God on my side, Upasana? Thank you!
Pat,
Very happy news for you. I am glad for your very positive news. Keep fighting.
Sondra
Thank you for sharing your story. I hope you continue to get good news. I was diagnosed on June 29th. I have stage 1, with 10% plasma cells. My future looks good presently. My recent PET scan revealed that the cancer in my pelvic area, liver, kidney and spine is gone. There is only cancer showing in my rib cage. I had radiation in July and began chemo on July 27th. I see my hematologist on October 21 to discuss stem cell harvesting and stem cell transplant. I am happy I found this site. I look forward to following every one's journey.
Yes! Thanks, Sondra!
Following your story closely Pat. Thank you for all the details. Best wishes for a continued positive response.
Pat - thanks for the reply and the tip. We will keep it in mind.
If the second SCT does what my doctor and I expect it to, this could be an example of a safer (but still highly toxic) way to aggressively attack myeloma after it's become drug resistant. I appreciate the support!
Pat,
You continue to be on my mind. I am sending good thoughts and wishes your way from New York. May the second transplant go well.
Olga
Sorry about the Yankees loss. Thanks for thinking of me, Olga!
Pat, thank you for continuing to share your myeloma journey with us at the Beacon. I find your myeloma expert's thinking and comments to be quite interesting. I am also encouraged by the results of your first salvage stem cell transplant. The plan set forth by your myeloma specialist is probably put together based on the experience of several myeloma doctors. It does offer the best path to a positive outcome for you.
And you are so right to work on your physical condition and some mental preparations before your next step. My biggest regret is the loss of my previous level of strength and fitness. I was encouraged by my transplant team to bring photographs depicting where I wanted to be following the transplant and to mentally see myself there and doing the things I wanted to following the transplant.
The use of the antibody treatment following the transplant process is also a logical step. The results I have seen offer a lot of hope for the future. I see many of the myeloma patients receiving a long term treatment option with less side effects. It may not be a cure, but it offers a viable control of myeloma not available in the past.
I will keep watching your progress and your reports. I will keep you and Patti in my prayers. By the grace of God, may you continue to improve. Your presence here has improved the lives of many others!
Marcia
Thanks for the kind words, Marcia – and for taking the time to comment. Good tip about using positive images to help remember why we're letting our doctors torture us like this! Hope it works out for you. Me, too!