My husband is the one with myeloma. He is currently in the hospital to have his auto stem cell transplant. We live in the UK.
I spend hours on this site and elsewhere on the Internet, looking for positive stories and how people are winning this battle.
I would really like to hear anyone's positive stories to help me through this tough time.
Suzi
Forums
Re: Give me some happy news
I guess "happy" is a relative thing for us all, but I can give you a quick look at what I've been through as an example of things going pretty well (or at least so far).
I was diagnosed in May of 2012, before I had noticed any overt symptoms (although my wife says I was a bit less energetic then usual). Did the typical four months or so of Revlimid / dex and then one course of Velcade, all of which knocked the disease down very nicely.
Went in for the auto-SCT in February of 2013. I have to say that it really wasn't too terrible. I had a bit of nausea, which was well controlled with Compazine (prochlorperazine) and Ativan (lorazepam), and I never had a mouth sore. I had mild diarrhea, but nothing too bad there, either.
The worst part of the whole thing was when they pumped me full of fluids to flush out residual melphalan and DMSO - I gained 20 pounds and puffed up like the Michelin Man! That only lasted a day or two, though, before I deflated back to my normal self.
Once my blood counts hit bottom, they recovered extremely quickly and I was out of the hospital after a total of 15 days. The nurses told me that that only a few others had been released that early and that it had never happened there before 2012.
By the time I left the hospital, my pillow was starting to look like some kind of dead animal from all of my fallen-out hair that covered it, so the first thing I did when I got home was have my daughter shave my head for me.
This turned out quite well! My hair was not exactly lustrous and flowing when I went into the hospital and the shaved-head look is fairly trendy these days.
I went ahead and stayed with that look, so I can thank the auto-SCT procedure for giving me the most fashionable haircut I've had in the last thirty years.
I was diagnosed in May of 2012, before I had noticed any overt symptoms (although my wife says I was a bit less energetic then usual). Did the typical four months or so of Revlimid / dex and then one course of Velcade, all of which knocked the disease down very nicely.
Went in for the auto-SCT in February of 2013. I have to say that it really wasn't too terrible. I had a bit of nausea, which was well controlled with Compazine (prochlorperazine) and Ativan (lorazepam), and I never had a mouth sore. I had mild diarrhea, but nothing too bad there, either.
The worst part of the whole thing was when they pumped me full of fluids to flush out residual melphalan and DMSO - I gained 20 pounds and puffed up like the Michelin Man! That only lasted a day or two, though, before I deflated back to my normal self.
Once my blood counts hit bottom, they recovered extremely quickly and I was out of the hospital after a total of 15 days. The nurses told me that that only a few others had been released that early and that it had never happened there before 2012.
By the time I left the hospital, my pillow was starting to look like some kind of dead animal from all of my fallen-out hair that covered it, so the first thing I did when I got home was have my daughter shave my head for me.
This turned out quite well! My hair was not exactly lustrous and flowing when I went into the hospital and the shaved-head look is fairly trendy these days.
I went ahead and stayed with that look, so I can thank the auto-SCT procedure for giving me the most fashionable haircut I've had in the last thirty years.
-
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: Give me some happy news
Hi Suzi,
I have never faced this from where you are standing - I am the patient. I've been through two stem cell transplants, and I'm not going to lie, it's a bit rough. However, I have read some posts where the patients have flown through the whole thing with few issues. I was not one of those people, although my experiences were not really all that bad. I'm just a big baby when I have a sick stomach. I'm kind of embarrassed to admit it, but, even though I'm usually a strong person, colds and sick stomachs have a way of making me whine like a little kid. Pretty sad, huh?
I do not have any close family to stay with me throughout the stem cell transplant and recovery, so my best friend took on the extremely important role of caregiver. I know it's just as hard on a caregiver as it is the patient -- probably harder in many ways. I know the whole thing was stressful for my caregiver, but she took a lot of walks to help her cope. And, she's one of those people who makes friends easily, so she got to know a lot of people during the twenty-something days we were there -- both times, and she stayed in contact with some of them long after we left.
I know that you are worried, and that's only natural. But, please, don't let fear define your day. I'm guessing that you are staying at the hospital during this time. Just look around you, Suzi. There are probably plenty of others who are going through the same things you are, feeling the same things. Talk to them, and I think you will forge new and strong friendships with others like yourselves, and you will be able to help each other through.
This forum, too, is a great place to be.
God bless you and your husband, Suzi. Keep us posted as to how things are going.
You are in my prayers,
Mary
I have never faced this from where you are standing - I am the patient. I've been through two stem cell transplants, and I'm not going to lie, it's a bit rough. However, I have read some posts where the patients have flown through the whole thing with few issues. I was not one of those people, although my experiences were not really all that bad. I'm just a big baby when I have a sick stomach. I'm kind of embarrassed to admit it, but, even though I'm usually a strong person, colds and sick stomachs have a way of making me whine like a little kid. Pretty sad, huh?
I do not have any close family to stay with me throughout the stem cell transplant and recovery, so my best friend took on the extremely important role of caregiver. I know it's just as hard on a caregiver as it is the patient -- probably harder in many ways. I know the whole thing was stressful for my caregiver, but she took a lot of walks to help her cope. And, she's one of those people who makes friends easily, so she got to know a lot of people during the twenty-something days we were there -- both times, and she stayed in contact with some of them long after we left.
I know that you are worried, and that's only natural. But, please, don't let fear define your day. I'm guessing that you are staying at the hospital during this time. Just look around you, Suzi. There are probably plenty of others who are going through the same things you are, feeling the same things. Talk to them, and I think you will forge new and strong friendships with others like yourselves, and you will be able to help each other through.
This forum, too, is a great place to be.
God bless you and your husband, Suzi. Keep us posted as to how things are going.
You are in my prayers,
Mary
-
inky100 - Name: Mary
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2005
- Age at diagnosis: 43
Re: Give me some happy news
Suzi,
Mike is right. I too have the best hair cut I've ever had. I had long hair for all of my 43 years before diagnosis, but I always wanted to try a short hair style. However, I was a very big 'chicken little'. Well ... the chemo definitely took care of that! I now have short hair, and, although I miss my long hair in the winter for obvious reasons, I don't think I'll ever let my hair grow out again.
Have a great day,
Mary
Mike is right. I too have the best hair cut I've ever had. I had long hair for all of my 43 years before diagnosis, but I always wanted to try a short hair style. However, I was a very big 'chicken little'. Well ... the chemo definitely took care of that! I now have short hair, and, although I miss my long hair in the winter for obvious reasons, I don't think I'll ever let my hair grow out again.
Have a great day,
Mary
-
inky100 - Name: Mary
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2005
- Age at diagnosis: 43
Re: Give me some happy news
Suzi-
I often think that the diagnosis of myeloma is hardest on the person who is the caregiver, you, because you have to stand on the sidelines and watch rather than being intimately involved in being treated, etc. Your husband is doing what is a positive thing for himself. Having the transplant can really knock down the myeloma so that life improves once he recovers. Recovery can be long after the transplant, but it doesn't have to be horrible.
I pretty much breezed through my transplant with only a couple of days of diarrhea, a couple of months of nausea that nothing helped, and many months of fatigue. But, I was out and about doing something every day after I was discharged from the hospital. I took advantage of the time off from work. My sister, who came to be my caregiver during the 6 weeks following the actual reinfusion of my stem cells, and I went out to eat, went shopping, went to the movies and visited friends. I had to be careful about when in the day I did these things to avoid crowds and only to do one a day because of fatigue, but it helped me to feel like I was getting back to normal.
I went almost 3 years without any treatment following my transplant. When I relapsed I went back on the same regimen as I had been on pre-transplant and responded really well quickly. 21 months after my relapse I am still doing well. In fact, this year I felt healthy enough that I spent 10 days in your UK, flew to Prague for a week and then to Dubrovnik for a week, and had a wonderful time in each place. So, what seems bleak right now should improve and you will have close to a normal life again.
Be sure to take some time for yourself while your husband is in the hospital. He is being well cared for there. Plan to get together with friends and do something that all of you really enjoy doing. Or, plan some way to really pamper yourself with a friend that you wouldn't normally do. Remember that you are important, too and you need to stay healthy.
All the best to you and your husband,
Nancy in Phila
I often think that the diagnosis of myeloma is hardest on the person who is the caregiver, you, because you have to stand on the sidelines and watch rather than being intimately involved in being treated, etc. Your husband is doing what is a positive thing for himself. Having the transplant can really knock down the myeloma so that life improves once he recovers. Recovery can be long after the transplant, but it doesn't have to be horrible.
I pretty much breezed through my transplant with only a couple of days of diarrhea, a couple of months of nausea that nothing helped, and many months of fatigue. But, I was out and about doing something every day after I was discharged from the hospital. I took advantage of the time off from work. My sister, who came to be my caregiver during the 6 weeks following the actual reinfusion of my stem cells, and I went out to eat, went shopping, went to the movies and visited friends. I had to be careful about when in the day I did these things to avoid crowds and only to do one a day because of fatigue, but it helped me to feel like I was getting back to normal.
I went almost 3 years without any treatment following my transplant. When I relapsed I went back on the same regimen as I had been on pre-transplant and responded really well quickly. 21 months after my relapse I am still doing well. In fact, this year I felt healthy enough that I spent 10 days in your UK, flew to Prague for a week and then to Dubrovnik for a week, and had a wonderful time in each place. So, what seems bleak right now should improve and you will have close to a normal life again.
Be sure to take some time for yourself while your husband is in the hospital. He is being well cared for there. Plan to get together with friends and do something that all of you really enjoy doing. Or, plan some way to really pamper yourself with a friend that you wouldn't normally do. Remember that you are important, too and you need to stay healthy.
All the best to you and your husband,
Nancy in Phila
-
NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Give me some happy news
Suzi,
My situation is similar to Mike's. I had very few issues with my SCT. I would say that the worst thing that happened was that my PICC line pulled out of position and had to be replaced. Not a huge deal. A bit of nausea that was controllable, and, like everyone else, diarrhea. My numbers came down the way they should and came right back up. Many people require a blood transfusion during the process, but the only thing that I needed was a bag of platelets.
That was last November so I'm approaching my 1 year anniversary when I will receive all of my childhood immunizations. Since that time I have been in complete remission. I just had an appointment with my nephrologist, since my one and only kidney was the biggest concern at the time of my diagnosis. My blood counts are all normal, there is no blood in my urine (there were microscopic traces at the time of my diagnosis), and there is no trace of protein in my urine. Overall, he was very pleased with the report. My next appointment with my oncologist is next month. Hopefully his report will be in the same vein.
My only real complaint is that the Revlimid that I take for maintenance tends to make me drowsy. Lately I have been counteracting that with caffeine (which I had given up for over a year), which has helped. I guess if that's my only issue, I can consider myself lucky.
I hope that your husband's SCT goes as well as mine. While it was "textbook" in it's character, unfortunately it isn't the norm. I also hope that he has the same results that I have thus far had.
Rick
My situation is similar to Mike's. I had very few issues with my SCT. I would say that the worst thing that happened was that my PICC line pulled out of position and had to be replaced. Not a huge deal. A bit of nausea that was controllable, and, like everyone else, diarrhea. My numbers came down the way they should and came right back up. Many people require a blood transfusion during the process, but the only thing that I needed was a bag of platelets.
That was last November so I'm approaching my 1 year anniversary when I will receive all of my childhood immunizations. Since that time I have been in complete remission. I just had an appointment with my nephrologist, since my one and only kidney was the biggest concern at the time of my diagnosis. My blood counts are all normal, there is no blood in my urine (there were microscopic traces at the time of my diagnosis), and there is no trace of protein in my urine. Overall, he was very pleased with the report. My next appointment with my oncologist is next month. Hopefully his report will be in the same vein.
My only real complaint is that the Revlimid that I take for maintenance tends to make me drowsy. Lately I have been counteracting that with caffeine (which I had given up for over a year), which has helped. I guess if that's my only issue, I can consider myself lucky.
I hope that your husband's SCT goes as well as mine. While it was "textbook" in it's character, unfortunately it isn't the norm. I also hope that he has the same results that I have thus far had.
Rick
-
Blackbird - Name: Rick Crow
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Feb, 2013
- Age at diagnosis: 53
Re: Give me some happy news
Thanks everyone for your kind words of support.
Lee is Day +6. He has not had too many problems -- slightly loose bowels, loss of appetite, and his temperature is a little on the high side, but they are giving him antibiotics to keep on top of any infection.
We live 40 minutes from the hospital, so I'm travelling in daily, which isn't too bad and as we have a 12 year old son and a 10 year daughter, I like to be back for bedtime.
In a moment of madness I signed up to walk a night marathon in aid of the great British charity Cancer Research. I'm doing it with some great friends. Not sure if that counts as making time for myself! So think of me walking around London on the 27th September.
Lee is only 56, so a similar age to most of you. He was diagnosed in February this year. He is a non secretory myeloma patient and his initial treatment was CyBorD (cylcophosphamide, Velcade, dex), to which he responded very well to. SCT is the next treatment here in the UK, so fingers crossed this gives him a deeper remission.
I have to say your posts brought tears to my eyes and, even as I type this post, I can feel them stinging my eyes again. But it is so good to know that there are people out there who know what it really is like and who are now out the other side and can see daylight again
Thanks,
Suzi x
Lee is Day +6. He has not had too many problems -- slightly loose bowels, loss of appetite, and his temperature is a little on the high side, but they are giving him antibiotics to keep on top of any infection.
We live 40 minutes from the hospital, so I'm travelling in daily, which isn't too bad and as we have a 12 year old son and a 10 year daughter, I like to be back for bedtime.
In a moment of madness I signed up to walk a night marathon in aid of the great British charity Cancer Research. I'm doing it with some great friends. Not sure if that counts as making time for myself! So think of me walking around London on the 27th September.
Lee is only 56, so a similar age to most of you. He was diagnosed in February this year. He is a non secretory myeloma patient and his initial treatment was CyBorD (cylcophosphamide, Velcade, dex), to which he responded very well to. SCT is the next treatment here in the UK, so fingers crossed this gives him a deeper remission.
I have to say your posts brought tears to my eyes and, even as I type this post, I can feel them stinging my eyes again. But it is so good to know that there are people out there who know what it really is like and who are now out the other side and can see daylight again
Thanks,
Suzi x
Re: Give me some happy news
Suzi,
My SCT story is a little different, but I want you to see there are differing versions of "happy" news, because no one told me this before my SCT and follow-up.
I am only ~145 days post transplant. I had little to no issues with the SCT (I threw up more before the SCT due to the Neupogen than I did after!). I did have loose bowels, but that is pretty much a given, as is the fatigue. I only had one platelet transfusion. All in all, I came through really well.
Unfortunately, my 30 day protein numbers were about the same as my pre-SCT numbers. My 60 day numbers, likewise, were about the same. My wife and I were quite depressed as you can imagine. At 90 days, however, my kappa ratio was down significantly (almost normal). While I still have an M-spike, several of my proteins were in the normal range for the first time since diagnosis.
So my advice is to just enjoy each day as much as possible. Also, don't take the first (or even second) blood test result as definitive. Results can continue to improve for several months after the SCT.
And for your information, I am back at work. My energy level is as good, or better, than it has been in a year. My hair has grown back thicker than it was before (of course, that includes ALL my hair - not necessarily a good thing!).
I do hope your husband sees complete remission after his SCT, but don't think that any non-100% response is the end of the road. There are lots more options out there if needed. And even a partial response can be a blessing!
Jay
My SCT story is a little different, but I want you to see there are differing versions of "happy" news, because no one told me this before my SCT and follow-up.
I am only ~145 days post transplant. I had little to no issues with the SCT (I threw up more before the SCT due to the Neupogen than I did after!). I did have loose bowels, but that is pretty much a given, as is the fatigue. I only had one platelet transfusion. All in all, I came through really well.
Unfortunately, my 30 day protein numbers were about the same as my pre-SCT numbers. My 60 day numbers, likewise, were about the same. My wife and I were quite depressed as you can imagine. At 90 days, however, my kappa ratio was down significantly (almost normal). While I still have an M-spike, several of my proteins were in the normal range for the first time since diagnosis.
So my advice is to just enjoy each day as much as possible. Also, don't take the first (or even second) blood test result as definitive. Results can continue to improve for several months after the SCT.
And for your information, I am back at work. My energy level is as good, or better, than it has been in a year. My hair has grown back thicker than it was before (of course, that includes ALL my hair - not necessarily a good thing!).
I do hope your husband sees complete remission after his SCT, but don't think that any non-100% response is the end of the road. There are lots more options out there if needed. And even a partial response can be a blessing!
Jay
-
jglopic - Name: Jay Lopiccolo
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 2013
- Age at diagnosis: 38
Re: Give me some happy news
Hi Suzi,
Welcome to the forum. We hope you and your husband find it helpful for a very long time to come.
In case you have not already seen the, there are a number of discussion threads here in the forum where members have posted updates during their stem cell transplants. You can find a list of all these discussion threads in this posting,
"Useful links to existing forum discussions"
See, in particular, the section of the posting at the bottom titled "Stem Cell Transplant Experiences of Beacon Forum Members".
Almost all of these threads are about transplants that were carried out in the U.S. One of them, however, was for a transplant done on an outpatient basis in Australia ("MattSchtick's Stem Cell Transplant"). Most of the updates in that tread are video updates.
Best of luck to your husband.
Welcome to the forum. We hope you and your husband find it helpful for a very long time to come.
In case you have not already seen the, there are a number of discussion threads here in the forum where members have posted updates during their stem cell transplants. You can find a list of all these discussion threads in this posting,
"Useful links to existing forum discussions"
See, in particular, the section of the posting at the bottom titled "Stem Cell Transplant Experiences of Beacon Forum Members".
Almost all of these threads are about transplants that were carried out in the U.S. One of them, however, was for a transplant done on an outpatient basis in Australia ("MattSchtick's Stem Cell Transplant"). Most of the updates in that tread are video updates.
Best of luck to your husband.
Re: Give me some happy news
One other thing to keep in mind, Suzi, is that there has never been a better time to have myeloma. (OK, that does sound pretty weird, but it's true.)
The lines of therapy available right now are far superior to what we had ten years ago, and there is much more on the near horizon. Furthermore, the level of research going into this disease is inspiring (even if it's not up to the level of research on some of the more common cancers).
It's sadly true that some of us will not be around to benefit from what's being worked on now. People die from this disease every day, and many others suffer terribly from its effects.
If you read up on what many oncologists are saying, though, it seems that there are significant advances coming soon. It's hard not to believe that the disease will become chronically manageable, if not curable, while many of us are still leading full lives.
Given that your husband has only recently been diagnosed and started treatment, there's good reason to believe that he will be one of those people.
The lines of therapy available right now are far superior to what we had ten years ago, and there is much more on the near horizon. Furthermore, the level of research going into this disease is inspiring (even if it's not up to the level of research on some of the more common cancers).
It's sadly true that some of us will not be around to benefit from what's being worked on now. People die from this disease every day, and many others suffer terribly from its effects.
If you read up on what many oncologists are saying, though, it seems that there are significant advances coming soon. It's hard not to believe that the disease will become chronically manageable, if not curable, while many of us are still leading full lives.
Given that your husband has only recently been diagnosed and started treatment, there's good reason to believe that he will be one of those people.
-
Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
11 posts
• Page 1 of 2 • 1, 2