My husband was scheduled to have an auto transplant three months ago, but they called it off at the last minute due to unexpected cytogenetics lab results. Basically the results threw a wrench in their attempt to decide if he has a secondary never-before-seen cancer of the myeloproliferative type, or if he has a never-before-seen manifestation of myeloma.
In the meantime his myeloma specialist has consulted a dozen other specialists, and they all agree that they haven't seen anything like what he has. But the myeloma is under control from the Darzalex regimen he took while we were waiting, and the other issue has not progressed, so they are going to proceed with an auto transplant. They are planning for tandem autologous stem cell transplants six months apart, but if his other condition becomes diagnosable as a myeloproliferative disorder, they will switch the second transplant to an allogeneic one.
We just left Mayo on Friday and found out that we have to turn around and move down there on the 22nd. Somehow they managed to schedule us such that we will spend Thanksgiving, Christmas, New Year's, my husband's birthday, and our son's birthday away from home. Good thing we're not too attached to traditional holiday celebrations!
I have found the posts about people's transplant journeys here incredibly helpful, and feel a sense of camaraderie knowing that various others on this forum are walking this path at the same time. I will try to post anything that might be helpful to others, although I am not sure that I will be able to update as often as some do because I will be juggling the responsibilities of being a 24/7 caregiver to both my husband and our seven year-old son.
Best of luck to everyone else undergoing this or caregiving for someone who is; I hope we all have success stories to share soon.
Forums
-
mplsterrapin - Name: Ari
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: Fall 2015
- Age at diagnosis: 54
Re: Finally heading to transplant
Best of luck - I hope this gives your husband many happy years of remission.
-
Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
Re: Finally heading to transplant
I wish your husband the best of luck with his stem cell transplant. I'm sure 2017 will be a more positive year for you both.
Regards,
Dean
Regards,
Dean
-
Dean UK - Name: Dean
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: April 2016
- Age at diagnosis: 41
Re: Finally heading to transplant
Well, it looks like my husband is going through with his autologous transplant for real this time. We came down to Mayo (in Minnesota) right before Thanksgiving, and they did all the pre-transplant testing and insurance paperwork, and after a little more follow-up testing, they gave the go-ahead for the procedure.
The nurse had told us that stem-cell collection would begin on December 5th, going off their standard timeline, but later we found out that because he has a unique case, the doctor is doing an off-protocol schedule.
So last Saturday he had a 4-hour infusion of Cytoxan (cyclophosphamide), and this week he is getting the Neupogen injections daily. On Sunday they will do the CD34 test. We hope his levels are high enough that he can start collection on Monday; otherwise they plan to use Mozobil (plerixafor) injections to further boost stem cell release. Then they said it will take 3-5 days to collect 9 million cells for the tandem transplant and extras just in case.
My biggest hope is, first of all of course, that this works against his myeloma, but also that it tames his neutrophila (overproliferation of white blood cells). If his neutrophilia is not controlled by this transplant, that will probably confirm the doctors' fear that he also has a myeloproliferative disorder, and the second transplant will be allogeneic rather than autologous.
Of course, we would prefer to hear that he has one cancer rather than two, and we would like to avoid the allogeneic because of the higher mortality rate and because we would have to move down here for another four months rather than two. I worry that it will be hard enough on our soon-to-be-eight-year-old to be drug along through all this for two autologous transplants, but I think it would be even harder on him for his dad to have an allogeneic and be hospitalized and be away from our support network for twice as long. But we'll do whatever we need to because of course the most important thing is trying to get him to remission no matter what it takes.
Glad to hear that transplants seem to be going well for others who are in the middle or have gone through one recently. I hope we can add to the good news!
Best of luck to everyone else on this journey.
The nurse had told us that stem-cell collection would begin on December 5th, going off their standard timeline, but later we found out that because he has a unique case, the doctor is doing an off-protocol schedule.
So last Saturday he had a 4-hour infusion of Cytoxan (cyclophosphamide), and this week he is getting the Neupogen injections daily. On Sunday they will do the CD34 test. We hope his levels are high enough that he can start collection on Monday; otherwise they plan to use Mozobil (plerixafor) injections to further boost stem cell release. Then they said it will take 3-5 days to collect 9 million cells for the tandem transplant and extras just in case.
My biggest hope is, first of all of course, that this works against his myeloma, but also that it tames his neutrophila (overproliferation of white blood cells). If his neutrophilia is not controlled by this transplant, that will probably confirm the doctors' fear that he also has a myeloproliferative disorder, and the second transplant will be allogeneic rather than autologous.
Of course, we would prefer to hear that he has one cancer rather than two, and we would like to avoid the allogeneic because of the higher mortality rate and because we would have to move down here for another four months rather than two. I worry that it will be hard enough on our soon-to-be-eight-year-old to be drug along through all this for two autologous transplants, but I think it would be even harder on him for his dad to have an allogeneic and be hospitalized and be away from our support network for twice as long. But we'll do whatever we need to because of course the most important thing is trying to get him to remission no matter what it takes.
Glad to hear that transplants seem to be going well for others who are in the middle or have gone through one recently. I hope we can add to the good news!
Best of luck to everyone else on this journey.
-
mplsterrapin - Name: Ari
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: Fall 2015
- Age at diagnosis: 54
Re: Finally heading to transplant
As a wife of a multiple myeloma patient and a cancer survivor myself I wish you and your family all the best.
-
dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
Re: Finally heading to transplant
An update: unfortunately my husband's body isn't cooperating with the timeline we had been aiming for. He took longer than expected to bottom out after the Cytoxan, and even after ten days of Neupogen had no stem cells in his blood stream.
They gave him Mozobil (plerixafor) and sent him to collection a few days after what we had been told would be the latest possible day to start collection. They've given him Mozobil each night prior to collection, but after three days in the apheresis center, he doesn't even have half of what he needs. He is producing some, though, so hopefully it won't be more than three or four more days of collection.
The important thing is that he feels ok and isn't suffering many side effects, although the Mozobil does affect his gut a bit. It's just a mental adjustment because we had thought that by Christmas he would likely be two weeks post-transplant and we'd only have a couple more weeks before going home, but at this point I think we'll be lucky if he even gets his transplant before Christmas.
As a mom I feel a little bad that our son can't have a Christmas tree or poinsettia in the hotel room and that he'll be spending Christmas at the hospital, but of course as a rational adult I know that we're trying to give him the gift of more time with his dad, which of course is more important than anything else.
They gave him Mozobil (plerixafor) and sent him to collection a few days after what we had been told would be the latest possible day to start collection. They've given him Mozobil each night prior to collection, but after three days in the apheresis center, he doesn't even have half of what he needs. He is producing some, though, so hopefully it won't be more than three or four more days of collection.
The important thing is that he feels ok and isn't suffering many side effects, although the Mozobil does affect his gut a bit. It's just a mental adjustment because we had thought that by Christmas he would likely be two weeks post-transplant and we'd only have a couple more weeks before going home, but at this point I think we'll be lucky if he even gets his transplant before Christmas.
As a mom I feel a little bad that our son can't have a Christmas tree or poinsettia in the hotel room and that he'll be spending Christmas at the hospital, but of course as a rational adult I know that we're trying to give him the gift of more time with his dad, which of course is more important than anything else.
-
mplsterrapin - Name: Ari
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: Fall 2015
- Age at diagnosis: 54
Re: Finally heading to transplant
Another update: we are finally, at long last, getting the transplant show on the road. We were informed at the last minute that they wanted to test my husband's stem cells to make sure they were viable, due to the unexplained white blood cell disorder. So that put us another two weeks behind the expected timeline. We came here 6 weeks ago to start what we thought would be a 6-8 week process, but he hasn't even had his transplant yet.
However, yesterday the stem cell viability test came back with good results, so today he had minor surgery to place his Hickman catheter, and then we went to the transplant unit for his melphalan infusion. Friday will be Day 0.
They gave him lots of prophylactic anti-nausea drugs, so he's feeling fine so far. He sucked on ice chips and popsicles, so we're hoping he avoids the mouth sores.
They tentatively scheduled his clearance-to-go-home appointment for January 31st (which could change if there are complications), so we are hoping everything goes smoothly with a minimum of side effects and nothing comes up to keep us here even longer. It will be nice to be done living in a hotel room with an energetic child and be back home to see our friends and family, even if it is only a month or so until we have to come back for the next transplant. Hopefully he can gather his strength and we can all recharge before doing it again, and I take much comfort in knowing all these delays can't occur a second time because now they have all the stem cells and know they're viable.
However, yesterday the stem cell viability test came back with good results, so today he had minor surgery to place his Hickman catheter, and then we went to the transplant unit for his melphalan infusion. Friday will be Day 0.
They gave him lots of prophylactic anti-nausea drugs, so he's feeling fine so far. He sucked on ice chips and popsicles, so we're hoping he avoids the mouth sores.
They tentatively scheduled his clearance-to-go-home appointment for January 31st (which could change if there are complications), so we are hoping everything goes smoothly with a minimum of side effects and nothing comes up to keep us here even longer. It will be nice to be done living in a hotel room with an energetic child and be back home to see our friends and family, even if it is only a month or so until we have to come back for the next transplant. Hopefully he can gather his strength and we can all recharge before doing it again, and I take much comfort in knowing all these delays can't occur a second time because now they have all the stem cells and know they're viable.
-
mplsterrapin - Name: Ari
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: Fall 2015
- Age at diagnosis: 54
Re: Finally heading to transplant
Thank you for the update and will be following your reports, hoping for smooth sailing without complications. Great news that you all are finally underway!
-
moonscape - Who do you know with myeloma?: me
- When were you/they diagnosed?: 11/2015
Re: Finally heading to transplant
I meant to post updates about my husband's autologous transplant along the way, but didn't quite find the time. In short, our opinion of the process is that it was not as bad as we feared.
My husband was very lucky in that he suffered very few reactions or side effects in comparison to what was possible, and I realize that not everyone is so fortunate. But, having cared for him during this process, I would definitely have one myself if there were a good chance it would save or extend my life, and he doesn't regret having tried it and would make the same decision again. Some people here have compared the worst days to having a hangover, and I don't have experience with that, but what it reminded me of was a difficult pregnancy (overwhelming nausea, fatigue, etc) or having a really bad flu. Something you look back at and think, "Wow, that was awful," but then you move on with your life. And really only 2-3 days were like that. I feel that the psychological/social aspects of moving away from home, not being able to work, worrying about finances, and having to be poked and prodded in the medical system every single day were, for him, actually more of a burden than the literal physical side effects. Again, this is not to discount the difficult time others have had (or to pretend it was a walk in the park), but only to add one more voice to the varied chorus of myeloma experiences.
That being said, I fear that we just spent ten weeks away from home chasing a result we aren't going to get. For those who didn't read the earlier posts, he has not only multiple myeloma (with multiple high-risk cytogenetics), but an inexplicable white blood cell disorder they have never seen before. After much investigation, his doctor at Mayo and the dozen colleagues he conferred with decided to recommend a tandem autologous transplant in the hopes that one of the possible explanations turned out to be correct, namely that the white blood cell disorder was connected to the myeloma. However, within a week of the transplant, it became clear that the WBCs were multiplying much too quickly. Now, on Day 23, he already has five times more than the highest possible amount that can be called normal, and the count is leaping up every single day.
Because he recovered and engrafted so well from his transplant, the transplant team actually said he could go home Day 18 or 19. However, at his exit appointment on Day 19, the transplant doctor was concerned enough about his persistent cough to say he needed to have a lung CT scan and stay one more day to meet with a pulmonologist before being cleared to leave. It was lucky that she did, and that the pulmonologist said he had to stay for a bronchoscopy later in the day. They said we could leave after the bronchoscopy and the pulling of his Hickman line, and they would call us if they needed to prescribe any additional antibiotics due to the bronchoscopy results.
Literally as we were driving away from the hospital toward the hotel to pack up and move back home, he suddenly started becoming very ill. This was not 15 minutes from the last moment we were in a room with a doctor and he was perfectly fine. When we got into the hotel, I realized he had a fever and was shaking hard with the chills, and had to turn around and take him back to the hospital. By the time we got to the bone marrow transplant unit, his vitals were so poor that they called the mobile ICU team to come stabilize him and determine if he needed to be in the ICU (thankfully he didn't). He had escaped being admitted through the entire transplant process, only to end up spending two nights in the hospital when we were supposed to be home! At first they thought he had an infection of some sort due to the suppressed immune system, and of course the cough added to those suspicions, but in the end, after running myriad tests, they could find no infection of any kind.
At least it got the attention of the hematology specialists, and they jumped in and got to work trying to figure out the WBC disorder, which they said probably caused the fever. We had previously been told that we had to wait until his primary hematologist was back in town and meet with him Tuesday to address that issue, but when you show up at the hospital in that state, they pay lots of attention to you in a hurry. They ran many more tests (in addition to all the ones they had done before transplant), but all of them have come up negative. There are a number of tests looking for genetic mutations sent to an outside laboratory that haven't come back yet, but hopefully when we meet with the doctor on Friday (they pushed the appointment back to try to get more test results first), he has an answer. They have thought for the last 18 months that it's some sort of myeloproliferative cancer, but it's not one of the types that has been classified before, so who knows what they will come up with.
I was primarily concerned about the WBCs, since they are what is aggressive right now, but I noticed in his online lab results today that they had ordered all sorts of myeloma-related blood tests, and that his albumin is low, his M-spike is unchanged from before transplant (although it was in a decent remission at 0.6, so still not bad), the size of his monoclonal proteins is unchanged from before transplant, and he has a high number of kappa free light chains. So all that kind of worries me that perhaps the transplant was not only completely ineffective against the WBC disorder, but also the myeloma. I know the official result isn't declared until Day 100, but it would have been nice to have a bit of encouragement, however temporary, that he went through all that for SOMETHING.
I'm rather worried they will recommend an allogeneic transplant, which they said would likely be a possibility if the auto didn't work. Of course it has a higher mortality rate, and also he does not have a good match either in the donor registry or his family, and the last time they checked there wasn't even a great match in cord blood. Furthermore, we are all emotionally exhausted from this ordeal, and while he may have done better than the average patient, he is still in a much weaker state than he was before the first transplant. Also, things are more complicated because have an eight year-old with us. He has dealt very well with being away from his home and friends and activities and having his life revolve around this medical treatment, but it made my heart sink when they said we would need to move back here for at least 3-4 months for an allo transplant. Also, I think I would feel more confident that it was worthwhile if it were just for the myeloma, because I know others have tried that and it worked well, but I don't want him to go through it as a guinea pig for something they aren't sure it will cure.
We've been living in uncertainty about this for almost two years, so I guess a little longer won't be the end of the world, and we are so very much looking forward to going home in a few days, even if it's only for a while. I think I will be happier to sleep in my own bed than I ever have been in my life. Sorry about the long saga--I guess I just crammed a month's worth of updates into one post. I have gotten so much out of reading other people's experiences during this journey that I thought I would share in case any of the information helps anyone else.
My husband was very lucky in that he suffered very few reactions or side effects in comparison to what was possible, and I realize that not everyone is so fortunate. But, having cared for him during this process, I would definitely have one myself if there were a good chance it would save or extend my life, and he doesn't regret having tried it and would make the same decision again. Some people here have compared the worst days to having a hangover, and I don't have experience with that, but what it reminded me of was a difficult pregnancy (overwhelming nausea, fatigue, etc) or having a really bad flu. Something you look back at and think, "Wow, that was awful," but then you move on with your life. And really only 2-3 days were like that. I feel that the psychological/social aspects of moving away from home, not being able to work, worrying about finances, and having to be poked and prodded in the medical system every single day were, for him, actually more of a burden than the literal physical side effects. Again, this is not to discount the difficult time others have had (or to pretend it was a walk in the park), but only to add one more voice to the varied chorus of myeloma experiences.
That being said, I fear that we just spent ten weeks away from home chasing a result we aren't going to get. For those who didn't read the earlier posts, he has not only multiple myeloma (with multiple high-risk cytogenetics), but an inexplicable white blood cell disorder they have never seen before. After much investigation, his doctor at Mayo and the dozen colleagues he conferred with decided to recommend a tandem autologous transplant in the hopes that one of the possible explanations turned out to be correct, namely that the white blood cell disorder was connected to the myeloma. However, within a week of the transplant, it became clear that the WBCs were multiplying much too quickly. Now, on Day 23, he already has five times more than the highest possible amount that can be called normal, and the count is leaping up every single day.
Because he recovered and engrafted so well from his transplant, the transplant team actually said he could go home Day 18 or 19. However, at his exit appointment on Day 19, the transplant doctor was concerned enough about his persistent cough to say he needed to have a lung CT scan and stay one more day to meet with a pulmonologist before being cleared to leave. It was lucky that she did, and that the pulmonologist said he had to stay for a bronchoscopy later in the day. They said we could leave after the bronchoscopy and the pulling of his Hickman line, and they would call us if they needed to prescribe any additional antibiotics due to the bronchoscopy results.
Literally as we were driving away from the hospital toward the hotel to pack up and move back home, he suddenly started becoming very ill. This was not 15 minutes from the last moment we were in a room with a doctor and he was perfectly fine. When we got into the hotel, I realized he had a fever and was shaking hard with the chills, and had to turn around and take him back to the hospital. By the time we got to the bone marrow transplant unit, his vitals were so poor that they called the mobile ICU team to come stabilize him and determine if he needed to be in the ICU (thankfully he didn't). He had escaped being admitted through the entire transplant process, only to end up spending two nights in the hospital when we were supposed to be home! At first they thought he had an infection of some sort due to the suppressed immune system, and of course the cough added to those suspicions, but in the end, after running myriad tests, they could find no infection of any kind.
At least it got the attention of the hematology specialists, and they jumped in and got to work trying to figure out the WBC disorder, which they said probably caused the fever. We had previously been told that we had to wait until his primary hematologist was back in town and meet with him Tuesday to address that issue, but when you show up at the hospital in that state, they pay lots of attention to you in a hurry. They ran many more tests (in addition to all the ones they had done before transplant), but all of them have come up negative. There are a number of tests looking for genetic mutations sent to an outside laboratory that haven't come back yet, but hopefully when we meet with the doctor on Friday (they pushed the appointment back to try to get more test results first), he has an answer. They have thought for the last 18 months that it's some sort of myeloproliferative cancer, but it's not one of the types that has been classified before, so who knows what they will come up with.
I was primarily concerned about the WBCs, since they are what is aggressive right now, but I noticed in his online lab results today that they had ordered all sorts of myeloma-related blood tests, and that his albumin is low, his M-spike is unchanged from before transplant (although it was in a decent remission at 0.6, so still not bad), the size of his monoclonal proteins is unchanged from before transplant, and he has a high number of kappa free light chains. So all that kind of worries me that perhaps the transplant was not only completely ineffective against the WBC disorder, but also the myeloma. I know the official result isn't declared until Day 100, but it would have been nice to have a bit of encouragement, however temporary, that he went through all that for SOMETHING.
I'm rather worried they will recommend an allogeneic transplant, which they said would likely be a possibility if the auto didn't work. Of course it has a higher mortality rate, and also he does not have a good match either in the donor registry or his family, and the last time they checked there wasn't even a great match in cord blood. Furthermore, we are all emotionally exhausted from this ordeal, and while he may have done better than the average patient, he is still in a much weaker state than he was before the first transplant. Also, things are more complicated because have an eight year-old with us. He has dealt very well with being away from his home and friends and activities and having his life revolve around this medical treatment, but it made my heart sink when they said we would need to move back here for at least 3-4 months for an allo transplant. Also, I think I would feel more confident that it was worthwhile if it were just for the myeloma, because I know others have tried that and it worked well, but I don't want him to go through it as a guinea pig for something they aren't sure it will cure.
We've been living in uncertainty about this for almost two years, so I guess a little longer won't be the end of the world, and we are so very much looking forward to going home in a few days, even if it's only for a while. I think I will be happier to sleep in my own bed than I ever have been in my life. Sorry about the long saga--I guess I just crammed a month's worth of updates into one post. I have gotten so much out of reading other people's experiences during this journey that I thought I would share in case any of the information helps anyone else.
-
mplsterrapin - Name: Ari
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: Fall 2015
- Age at diagnosis: 54
Re: Finally heading to transplant
I'm exhausted just reading what you and your husband went through, mplsterrapin. What an experience! Thank you for the update, and I hope your husband's doctors are able to pin down the cause of his white blood cell issue and come up with a solution.
I agree that it's probably too early to tell what sort of effect the transplant has had on your husband's myeloma. That said, what has been happening with his involved free light chain level, which I believe you said was his kappa free light chain. You said it was still high, but is it heading down? Are they monitoring his free light chain levels very regularly.
Wish you, your husband, and all of your family the best,
Terry
I agree that it's probably too early to tell what sort of effect the transplant has had on your husband's myeloma. That said, what has been happening with his involved free light chain level, which I believe you said was his kappa free light chain. You said it was still high, but is it heading down? Are they monitoring his free light chain levels very regularly.
Wish you, your husband, and all of your family the best,
Terry
13 posts
• Page 1 of 2 • 1, 2
Return to Treatments & Side Effects