Pat’s Place: Tick Tock, Flip Flop
The July 4th holiday is behind us. I spend it in Iowa City, harvesting stem cells for my upcoming autologous stem cell transplant.
To review, after my fourth relapse – and a number of short-lived therapy options that would only work for months, not years – I made the difficult decision to try a salvage auto transplant, but only because it was going to be modified, as I described in my April column. I had a failed transplant four years ago. The best I got out of it was some resensitization; drugs that had stopped working before the transplant started to work for me again.
Clinical trials are not really an option for me. Even though I still have a faint M-spike, I’ve officially become a nonsecretor; tough to get in trials that way. As I mentioned in my May column, I think trial administrators like patients that are easier to track.
I was able to harvest almost nine million stem cells in four days last week! I never expected to get so many from this tired, beat up body eight years post diagnosis. Neupogen (filgrastim) helped get the party started, but Mozobil (plerixafor) was the star. It really is an amazing drug.
I already had 6.5 million stem cells on ice, so I wondered why my doctor had me harvest one additional day. I figured he wanted some fresh ones in the bank.
It’s unusual, but my specialist wanted to infuse a whopping 10 million cells back after hitting me hard with two infusions of high-dose melphalan (Alkeran), ten ongoing days of thalidomide (Thalomid), four Velcade (bortezomib) infusions, and 20 mg of dexamethasone (Decadron) daily just to make it a party!
It’s tough to take – the effects after the first melphalan infusion and a couple of days of the others have started to kick in, along with a strange buzz you get when your white cell count is through the roof; a result of revving my bone marrow up for a week. A bunch of extra stem cells circulating around in my blood, looking for a home or to be “milked” probably didn’t help, either!
That’s the background.
I saw my specialist this past Monday. My white counts starting to settle down from my stem cell harvest, which had ended last Thursday. I was feeling a lot better. Physically and emotionally, I had prepared myself to start with what would be a difficult month.
I expected an “attaboy” and a quick review of the days to come.
But there was an unexpected twist. Instead, my doctor proposed I return in three months for a second, or tandem, transplant. He was disappointed that two powerful FDA-approved drugs I had received – Kyprolis (carfilzomib) and cyclophosphamide (Cytoxan), together with dexamethasone – as induction for the modified transplant hadn’t stopped several large, new lesions from forming.
To be fair, I should mention that a second bone marrow biopsy in four months, this time in my sternum, had found no myeloma cells. And when they harvested my cells, most if not all of the paltry 1 percent of the plasma cells they identified were normal; no cancer.
So to say my meds weren’t working may not be quite accurate; they stopped progression of several existing lesions, but couldn’t prevent several new ones from starting or two prominent ones from getting larger.
Sort of a mixed bag, wouldn’t you say?
But a tandem transplant? That really threw me for a loop! My doctor felt a second transplant would squelch most, if not all, of the remaining myeloma cells in my lesions.
The thing is: that’s what he said my single, modified stem cell transplant would do. Why the change?
My doctor felt based on the results from my short (too short?) 10-week induction therapy, maintenance might be much harder – and require more intensive therapy – if I didn’t return in three months to do a second transplant. Having harvested some bonus cells would allow him to perform back-to-back transplants.
I was taken completely by surprise. “And Pat,” he said, “We need your answer in two days so I know how many stem cells to give you,” adding “Of course, the decision is up to you.”
He hadn’t given me very much time to make that overwhelming decision: To return home and get on with my life, allowing my other specialist at the Mayo Clinic in Florida to take things from here? Or to come back to Iowa City this fall and get “nuked” again?
So many thoughts and concerns: the extra toxicity and travel; precious time spent away from my family. But he seemed so sure a second transplant would do the trick. And isn’t that what I came here for in the first place? To let an expert try and buy me a few extra years of precious life?
Apparently, if I agreed to a tandem transplant, he would only infuse five million cells now, saving the rest for after my second.
Two days? My sister, who was helping me this week as a caregiver, suggested waiting for 10 weeks, getting another scan, and reevaluating things. My wife Pattie agreed, although I could tell she was leaning toward sticking with the original plan.
I received dozens and dozens of comments and opinions about what to do from fellow patients and others in the myeloma community. I have some great questions to ask the doctor when I see him to try and make a decision later today (I am writing this column on Thursday, July 9).
My specialist is a brilliant physician, and he’s been doing tandem transplants for well over 20 years. Yet, had I known I would need to do tandem transplants, I would never have made the decision to come to Iowa.
I can tell from talking with other patients that I am an outlier here; most all seem to be doing tandem transplants. But I’ve seen the stats, and they aren’t good. Yes, tandem transplants may help some patients who only achieve a very good partial response after their first. But we don’t know if that will be me.
Tick tock, flip flop.
If I had to make the decision today, I’d stick with my original plan. One modified transplant. But if my specialist can answer my list of 10 or more questions to my satisfaction – and if I can convince him to wait and see what happens down the line – I would consider coming back.
If I’ve made a decision, I’ll share it with you next month. Or we may not know until September.
Tick tock, flip fop.
Until then, wish me luck! I’ll be sucking on ice to try and prevent those pesky mouth sores and eating anti-nausea meds like candy.
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 .
All the best to you Pat..God bless
I hope all goes well for you. Good luck to you and God bless.
Pat-
Such a difficult decision to have to make at this time. I won 't dare to give you any advice other than to say that I know you will make the best one for you.
My sister lives in Iowa City. She has been a good local resource for a few people who have come for, or are considering coming for , treatment of their myeloma. If you and/or Pattie would like a local contact, let me know. She lives about 10 minutes from the hospital. That goes for anyone else who comes to be with you.
Both of us went to Beloit College. She lived in Green Bay and then Madison for about 10 years. So, have some of Wisconsin in common with you.
Sending you, Pattie, and the rest of your family the courage to know what is best and for a successful outcome.
Nancy in Phila
Pat, Hang in there. Hoping that you don't need many anti-nausea meds and that you recover quickly. I'll be pulling for you.
Cannot even imagine my husband (and I) trying to make these difficult decisions, Pat. Whatever course you decide to take, the best of luck to you and your caregivers.
Pat,
You are in the place where living with myeloma is really starting to get hard. I admire how you have educated yourself well beyond most with this disease to help you make informed decisions. The stress of making these kind of decisions and second guessing them later is something I hope I can put far out into my future but I have the feeling that I may just be behind where you are at by a few years or less.
Your postings with the details of the complications you have encountering are very helpful and I appreciate them. They are helpful to me to understand what I might possibly expect in my future and how to address them. It was insightful to see that you have some lesions that seem to have responded well while at the same time others were unaffected and new ones had formed. Seems to back the idea that in time different distinct genetic variants of myeloma form that respond differently to what is thrown at them. It must be kind of frustrating to see good labs and some lesions responding giving hope but a few that are not casting doubt.
The complexity of having different myeloma closes that needed to be treated differently with drugs and/or radiation and then monitoring the responses to all this to assess what is working and not is where I feel the experience of a myeloma specialist really starts to add a lot of value.
Best wishes and keep us up to date on how you are doing.
Go with tandem. I had 2 SCTs in 2010 with my cells. Today is my birthday; 7/10/10 was my first. Also non- secretory, we have a lot in common. If you trust and believe in your MM doctor, do it. I am 66 and feeling awesome. You will come out fine. Do it, get tandem!
Hi Pat,
I'm very sorry to hear about the tough decisions you and your family have to make and the state of your myeloma at this point. Has your doctor considered an allogeneic transplant after autologous?
Whatever course you take best of luck.
Dear Pat, Not qualified to give any advice but want to let you know I am pulling for you and that your columns have have been a source of encouragement to me if I or a loved one should deal with progressive myeloma difficulties. In my thoughts and prayers. Marti
Pat, this is such a bombshell! It's difficult enough to face one transplant, let alone, two! I cannot imagine what you are going through. I don't feel qualified to offer any advice. I had one transplant last October, and it was a lot to contend with.
I follow your column and have nothing but the utmost respect for your service to the myeloma community. No one deserves good results more than you do! Wishing you strength in your decision. Keep in mind, they can't do the second transplant until you have recovered sufficiently from the first. Maybe your body will give you the answers you need.
Thanks for all of your kind wishes! I'm just finishing a 10 bag infusion of my own stem cells from Mayo Rochester when I first collected back in 2007. They're small bags; no Mozobil to help push 'em along. We've all wisely decided to play things by ear. We'll see how well this SCT works before considering a second. Counter-intuitively, my specialist here things I should come back for a second if this one works well, not if it doesn't; he feels if these new, troublesome clones respond well to melphalan than hit 'em had again. If not, skip it and move on to something else. As someone shared above, I've got to get through this one first! Ten weeks out we'll re-evaluate. So far, so good! Two lousy weeks,then should start feeling better...
Hi Pat - Passing on our best thoughts to you and your family. I must say how appreciative we are that you are willing to share your knowledge and experiences with us and the myeloma community. You never know what nugget of information or inspiration may prove invaluable to your readers. Many thanks, once again, for allowing us to be part of your journey.
You are amazing Pat. The fact that you are able to write down all these thoughts at this moment.
Over two years ago I didn't know how to keep myself alive after my transplant and where foods and liquids went, in our out. My kidneys failed, my longs had a hard time and I had a sincere Redman desease outbreak as response to the antibiotics. My husband was not the only who fought he was going to loose me.
Taking it day by day sounds like plan, to figure out what your body can handle. Wishing you all the good fortune and faith to overcome whatever will be on your mm-path. Bless you Pat.
Pat,
Being given only two days to process all that information and come to a conclusion on your path forward seems a bit much. No doubt well intended, but heavy uneeded dose of stress.
Feel confident with whichever path you choose and hang tough.
All the best Pat. I hope those non-responding lesions are put to rest.
Hi Pat, I read your latest column with great interest and have so many questions. I too failed an auto SCT in 2009. I still have stored cells but the feeling with my doctor was, if it didn't work the first time, then it wouldn't work by trying it again. We left the decision of a double off the table in hopes that maybe someday there would be a better induction treatment that would perhaps make a second transplant viable. In the meantime, I have been treated with every drug new and old developed for MM. I do not respond to any drug. Meaning, that while I am on the drug, yes my numbers decline somewhat and at least do not grow. However when I become refractory, or through additional health issues brought on by the chemo have to stop taking the drug, I zoom back up in counts. So I have never had a remission, nor any appreciable time off from treatment for the last 8 years.
Your column confused me ... If you had a failed SCT, why do they think it will work now? If you had melphalan (hi dose) with that first SCT, how can they harvest any cells from you now? I have always been told that the reason for only 4 cycles of Revlimid prior to collection is that the bone marrow becomes damaged and they need to collect why they still can. I was also told that, after hi dose melphalan that, again, harvest is not possible.
Also, after reading about your levels, faint M-spike, and no measurable malignant cells in your bone marrow, what drives the doctors to recommend a SCT?
Would love to hear your thoughts as I've lived with this disease for a long time. The best I've been able to accomplish is to get in front of the progression through treatment, but I have never been able to get off the treatment roller coaster. I know so many who get treatment and then remission that lasts for some long periods of time, depending on the person, relapse, and get treatment, and remission again and again. Not me. I did the SCT because I thought it was bringing out the Big Guns and that I would succeed like 97% of persons who receive a SCT and get a remission, but, to quote the doctor on the 100 day check up, "it's like I had never been treated, the SCT did absolutely nothing for me". So your case is very confusing to me and I would love to understand more.
Pat,
It always seems that around the corner there is yet another treatment or variation of a technique that could help. I think this is one of them.
All the Best to You!
Mike in NJ
Pat,
I'm wishing you the best. My thoughts and prayers are with you and your family. I hope we hear on your progress.
Best,
Mary
Hi Pat,
Sorry for this problem you are having, I would just like to mention that my stem cell transplant lasted 2 weeks. All other drugs failed me until I was given trial panobinostat (Farydak) and dex and Revlimid; my M-spike went to 0 now. I was IgA 5000, now in line. Maybe, Pat, you could try it, just a mention. I have had my myeloma and still don't understand anything about it, just I feel so much better with this drug. I am treated at Mt. Sinai hospital in NYC.
I wish nothing but the best to you. Praying with you and everyone in your corner. They can knock us down, Pat, but they can't knock us out. Hang tough.
Pat
'Had I known I would NEED to do tandem transplants, I would never have made the decision to come to Iowa.'
Insightful words. I'll chew on that for awhile.
Be strong
Best of luck with your SCT process Pat, and thank you so very much for sharing all your insight, decisions, treatment quandaries, medical recommendations, and MM treatment options. You are very BRAVE, and such a wealth of knowledge and information for all of trending similar roads and decisions. May your SCT chemo neutropenic crash be "gentle" on you, and your stem cell engraftment happen asap!
My God, Pat. You sure have been through a lot and much more yet to endure. I've been in contact with you since 2011 and I remember all the previous treatments you have endured. I wish I could help with your decision, but I do not know enough about tandems with your history. But I will keep you in my prayers. God will give you the answer. God Bless and remember, Luck is the residue of desire!!
JGH,
I'm curious, where are you getting treatment? Also, are you high risk? What did your FISH show? I am also wondering about Pat, if there is just faint M-spike, and no measurable malignant cells in your bone marrow, what drives the doctors to recommend a SCT?
Wow that's a curve ball. Tough call. I am recovering from a salvage ASCT. My 2nd ASCT, traditional melphalan 3 years after 1st ASCT. My disease was pretty much out of control. Biopsies were coming up 100% cancer. Good news – the ASCT it knocked it down and my tumors disappeared. Went from 4.3M to 1.3M.
Best of luck in your decision process. You may want to ask your doctors what are the implications for future ASCT? I am feeling like it's the only thing that seems to really knock the multiple myeloma down. With 2nd, the recovery is longer by weeks, and side effects were stronger than the 1st ASCT (May 2012). Not sure I could tolerate a 3rd. But I like the idea I have cells in the bank for a 3rd.
Best of luck Pat!! Wish I could be more helpful!!
Mike
A curve ball? More like a medicine ball (no pun intended). Reminds me of the game I used to play with my brothers, where one of would suddenly lob something (a ball, a rock, whatever) at one of them and shriek "Think fast!"
Thinking of you, Pat.
No questions, you need to focus on this working. I believe we are here for a reason. Your strength, hope, and willingness to share is gratefully received. Stay in the game for everyone, but most importantly for yourself and family!
Pat,
Thinking of you, for sure. Hoping this day is a more comfortable one for you as you recover from the SCT. "One day at a time."
Sylvia
As always, your responses have been overwhelmingly touching. Not a day goes by when I don't realize there are so many others like me, concerned, scared, wishing and hoping an unpredictable, highly toxic therapy might do so good; the ultimate leap of faith. Sounds like Mike has some encouraging news.
If you will indulge me, I would like to address some of JGH's questions. First, sorry conventional therapy hasn't been working well for you. That said, something must be working a bit or you wouldn't still be around. Here's the thing. My doctor has more than 20 years with the Total Therapy treatment regimen, which combines tandem transplants with intensive induction therapy. I NEVER would have undergone a high dose melphalan-only SCT. But he believes that incorporating Velcade and thalidomide (dex, too, of course) into the mix helps the melphalan work better and more deeply. I would have agreed to also undergo D-PACE (sometimes VDT-PACE) for induction; my doctor had concerns my body wouldn't have help up well to that, too.
I've become a nonsecretor. My M-spike is no longer a good indicator of how my myeloma is progressing. The concern is the large lesions I have in dangerous places. We thought this was worth a shot, even though several well known myeloma specialists didn't think it was a good idea.
Time will tell. Do a tandem? Most likely not. Apparently the time to try is if the first one works very well; sort of counter intuitive. I wish you the best of luck. My only advice: I'm not a doctor, and I don't know your case that well. But sounds to me like you should be exploring some out-of-the-box thinking. Find a doc that will try unusual three and four drug combinations. How about an odd combo like Revlimid and Pomalyst or thalidomide together? Doubling up on the dose of Kyprolis, combined with something you haven't tried yet. Panobinostat, maybe? Or nuke the sucker; D-PACE, tough induction, modified allo with intense consolidation and early maintenance. None is fun; I hate it all. Find a doctor that isn't afraid to experiment some; easier said than done! Best of luck to you, new friend; I share your pain ...
Pat,
Wow! What a suckerpunch to the gut, for sure! It's hard to have a game plan that you're mentally prepared for and then have to call an audible at the last minute. Take heart though! There isn't a better educated patient out there to make this decision. My husband and I are wishing you lots of good health in the weeks and months ahead.
To Pat and Alice. First Alice. I had my SCT at the Mayo Hospital in Scottsdale AZ back in 2009. I don't remember details about my FISH test. I believe there was nothing remarkable about the results. The only remarkable thing was that no treatment regimen or drug ever put me in a remission or gave me a reduction in M protein that lasted beyond the amount of time I was taking the drug. I went through all the drugs that were available at the time and after the transplant was told there was no treatment available and that I needed to hang on until some of the newer drugs were made available. I have since done 18 months of Kyprolis and nearly 12 months of Pomalyst.
Pat, thank you for the response. I have been reading your columns for the last few years and have learned from them and admired your strength. It is confusing deciding what treatment to try. After my SCT was deemed a failure, my Mayo doctor said that there was no point is trying a second "if the 1st didn't work, there was no likelihood a second would offer a different result." Over the ensuing years I have met many, many multiple myeloma patients and, as you know, no two cases are alike. No two persons numbers can be compared with any meaning. The disease seems to tailor itself to each individual.
I think that I am still here because I have a fantastic support system, especially my wife, who is my sole caregiver. I couldn't do it without her. I also think that, although the drugs don't give me a drastic response, they do slow down the progression. That's not to say I haven't had a few rough times. We all do. But, at this point, I have changed my treatment philosophy from trying the most aggressive paths with an eye towards getting a remission (like everyone else I know) to adopting a much milder form of treatment. (Chemo included) I am only expecting the milder form of treatment to just slow down the progression. If the numbers rise slowly or stay flat for a time, but maybe not reduce the cell counts, I am o.k. with that. I just want to enjoy and maximize my quality of life as long as possible. (Hmmm ... I think I've heard that advice from my caregiver for a number of years now.)
Pat, thank you for the advice on the mixing the drug regimens. I do have a doctor who is supportive of that type of thinking. I mean, since nothing else worked, then he and I feel we have nothing to lose. However, my mixing has only been with the new drugs. The reason for this is I am not clear on whether or not I can can go back to old drugs, such as Revlimid, Cytoxan, Velcade, etc. Because they didn't work, both the Mayo doctor and my treating oncologist said they couldn't prescribe these drugs again. I wonder if they are used in combination with newer drugs if that would change anything? Anyone have thoughts or comments?
Pat, hang in there, keep strong and keep writing, you are an inspiration to us all.
Pat, you are a very strong human being to to take the gamble you have taken. All of myeloma treatment is a gamble as no expert, however brilliant, can predict the outcome for any individual he/she treats for this relentless disease. We have statistics from trials, but statistics are not about individual responses and we as patients sometimes want to read into them things we want to read for ourselves. In your case, you knew the score, because you have gained a great deal of knowledge and understanding to decide how much of a risk you might take, to have the chance of an extended life. That is admirable and I hope you get through this with flying colours.
JGH, I am puzzled, have you only had two drug e.g. Velcade / steroid combinations, for your treatment regimens with the 'newer' drugs? When you say they did not work, actually something has kept you going for 8 years. So, although not in complete remission and so drug free, you are a longer-term survivor. As I have understood it, it is not always the case that when a myeloma-targeting drug stops working, it cannot be used again later in another combination. I suspect this is because if a new plasma clone has taken over, then a different drug may be needed to control the disease. I would be interested to know exactly what sequential treatment combinations you have had. I also think your decision to go for quality of life is important, as often quantity is what we seek, even if to achieve quantity we compromise significantly on quality.
All these decisions are personal and individual and there is no right or wrong approach, just as there is no internationally agreed treatment protocol for clinicians treating multiple myeloma. We rely on the decisions of individual doctors, sometimes in collaboration, and the drug companies who produce marketable drugs we need. It is all guesswork because each individual will respond differently to another because their body and the myeloma clones are different.
Hi Edna2, thanks for your support. I started treatment with Revlimid and Dex, then collected stem cells for a transplant. Since i didn't respond to Revlimid I was put on a double dose of CyborD (Velcade, Cytoxin and Dex) to get me more Transplant ready. While on the double dose of CyborD my numbers lowered, in the three week after I completed that cycle and was preparing for the Transplant my numbers increased to a slightly higher count than before I had the CyborD treatment. However the Doctor recommended we proceed the Bone Marrow Transplant anyway.
Just prior to the transplant I had Melphlan and Cytoxin, 100 days after the Transplant results showed that I had not responded to the transplant and at that point in time there were no additional MM drugs available to me. Believe me, I asked to go back on Revlimid or Velcade. However since these drugs didn't work for me, the Doctor said he could not prescribe them. He told me hang on as there were new drugs coming. So I had a break as there were no drugs available.
Since I hadn't taken Thalidomide I asked, but since I had done Rev the Thalidomide was out. When Kyprolis became available I began the twice weekly regimen along with Dex. I was on that regimen for a little over a year without any major success so we added Pomalyst to the mix. That combo gave me the best ever improvement (still no remission) but i achieved the biggest drop ever in my M spike and Light Chains. But after 18 months of the combo I had a setback by developing respiratory failure. I had to take a break from the chemo to recover. That reprieve lasted just 60 days when testing showed a relapse. Since I never had a remission lets just say my numbers spiked and I needed to go back on treatment.
This time I chose to use only the Pomalyst /Dex as the three drug combo that worked so well was too hard to tolerate. So as I said, I quit chasing the remission that I probably will never achieve and am focused on just seeing what Pomalyst and Dex will do. So far, as I suspected, it's not lowering my numbers but I'm holding steady and I feel so much better with the "gentler treatment". Looking forward, if the Pomalyst can't hold the MM in place I am excited to see the data on several of the newest drugs and I'm sure at some point they will figure in my life. While I say the drugs failed that maybe unfair because I guess you have to define what you expect the drugs to do. I know there is no cure for MM. But I think in the early days of our treatment, we all think that we will take that magic pill or infusion and the MM will disappear if only for a while.
I saw four MM specialists over this course of time and every one of them said prior to treatment that life would consist of a pattern of treatment followed by periods of remission in which I could live drug free and monitor the condition until it flared up again. That these cycles would repeat for an unknown period of time until eventually no treatment would help. So I followed their advice and treated hard. I just never got the reprieve. The only break I have had was the period of time after the transplant until Kyprolis was made available. So for me treatment has over the last several years been more or less a non stop thing. I'm not complaining because as you pointed out I'm still here and without these drugs I don't think I would be.
Thanks, Tabitha! It is hard ...
JGH, love your plan moving forward. A minimalist approach with the focus on using the lowest amount of drug and drug combinations, helping you hold on to a reasonable quality of life.
I don't have that luxury. These now large, very fast growing lesions (too many to radiate, at least for now) need to be controlled. Otherwise I would do the same.
Hi Pat,
I read your column because you just radiate hope. As a caregiver to my husband who had multiple myeloma, I can say that the word "roller coaster" does not come even close to what you are going through. I would not dream of giving you advice on your very personal decision, but I will say "go with your gut", no matter what that means. You were meant to come to Iowa for a reason, don't second guess it. No one walks in your shoes, this is your decision, there is not a right or wrong answer. I can imagine that you and your wife are scared and exhausted both mentally and physically. Patti will support you in your choice, that is what she wants to do. Whatever choice you make will be the right one if you follow your gut. You have already made so many decisions about this and they have been right for you. Don't think too much ahead (hard not to), just live your life joyously and peace will follow. Your bravery is remarkable, your wife is amazing and I so love your smile. You just keep putting one foot in front of the other in your own special way; you have so much more to teach. I send blessings and love your way, you take care now.
Dear Pat, good of you to touch base with us. I continue to hope and pray that your journey will be successful. So sorry that it is so hard. May it be worth every bit of suffering you are enduring. Best to you and wife. Marti
Thanks Barbara and Marti! Good advice about not dwelling on things in the future. All about balance, right?
Hey Pat,
Just thinking about you. Wishing you strength and hope, keep your spirit up. Just keep on keepin' on Pat, and your wife too. Sending prayers and love your way, no response necessary. I am sure you are tired but just wanted you and your family to know a lot of us out here have you in our thoughts and care. Blessings Pat, always.
Thanks, Barbara! I'm back home now, working to catch up and resting some, too. All good!
Hi Pat--
So glad to read that you are back home. You have been in my prayers and on my mind often these past weeks. Yor columns have been a huge inspiration to me since my husband was diagnosed in March of last year, already in stage three at that time. I think of your wife often also. I know how I agonize over the very real possibility of outliving my husband of nearly 48 years (and best friend for even longer!) As spouses, we also have the difficult balancing job of looking out for the myeloma patients health without being too "bossy" and undermining his independent nature. Please give your wife my best wishes and let her know there are those of us who understand and pray for her as we do for you.
My husband went through 14 rounds od RVD Iinduction therapy only to find out his heart disease made the stem cell transplant procedure too risky. Maintenance therapy with Velcade and dexamethasone did not control his disease so he is now on a combination of Kyprolis and dexamethasone, three weeks on and one week off. The oncologist said he will stay on this regimen until 8 cycles are completed. We don't know what will happen after that. But we know
God is in control and sees the end from the beginning. We are in His care, so who could ask for more than that?
May God bless you for blessing us with your columns, and may he bless your dear wife and partner in this journey as well!
So sorry to hear about your husband. If anyone understands, I do. I'm convinced this is harder for the caregiver. We'll get sicker and weak and inevitably just let go. But you and Pattie will be left picking up the pieces and trying to go on. Survival guilt and all that. But sounds like he has some options as do I. So hard (I'm bad at it) but one day at a time, right? I'm returning some of those prayers and hoping Kyprolis works. If it does, your doc will come up with some sort of creative maintenance. All good!
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