There are a lot of obsticles in life that we are challenged with in marriage. I truly believed love, live and laugh would get you through ... and a lot of patience. Lol
We had no idea what multiple myeloma was and not even a thought that it would soon invade our home.
In the last couple of months, my husband incurred many health issues, in part, we aggressively and successively dealt with them one by one. Now this.
My husband was diagnosed with smoldering myeloma in October. What is this? A couple of days later the MRI's had shown he was now diagnosed with multiple myeloma.
Our first thought was, OK, let's be aggressive, deal with this health issue, and be on our way, since I had cancer a couple of years ago. We were aggressive and beat it.
Not that simple. Needless to say, I've been researching multiple myeloma since. The Internet is not full of positive information for this diagnosis, or I've been looking in the wrong places.
I have to say I was thrilled to find this website to assist me in learning what is happening in our current life.
My husband has been having weekly treatments involving shots and pills. After his weekly treatments, he has so much energy that I joke I have a new honey to-do list waiting for him Monday afternoons.
We are now at the end of our 2nd session and facing a new challenge. Do we go for the transplant? It sounds dangerous either way. To have or not to have ... What are your thoughts, knowledge, and expertise?
Did I mention we have a child in 6th grade? They are so inquisitive at this age. Wanting to know everything and be so grown up. It's such another issue dealing with this. We are as honest as possible, yet don't have enough information on the transplant yet to relay any information.
I thank you for letting me vent and get all this stress off my shoulders. I truly feel I have finally found the best resource through this website and look forward to nightly research.
I'm proud to say our love and faith has provided us strength to carry us happily through life so far. We are very blessed.
Please provide your experience and knowledge of transplants. We need to make a decision soon.
Forums
7 posts
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Re: Our family's newest challenge: multiple myeloma
Please allow me to express my sorrow at your husband's diagnosis. As a cancer survivor yourself, I'm sure you are an inspiration to him at this difficult time.
You asked about transplant experiences. I was diagnosed after quite a few doctors, over 3 continents, in March and April of 2014. I came back to the States, started a chemo regimen in June/July, and achieved "remission" in October 2014.
I was advised to undergo a stem cell transplant, and despite my reservations, and nagging instinct, went ahead with it in November/December 2014. I was 47 at the time, and am a mother of two, and I can honestly say it was the most challenging medical experience I've ever undergone. I am an engineer and naturally inquisitive, so I asked plenty of questions before the process began. I've been blessed with excellent doctors, and excellent care, but nothing they said prepared me for the side effects and the newness of this body.
I went back to work in April 2015. My disease mutated from secretory to nonsecretory, and my relapse was confirmed in August/September 2015 - 9 months post transplant. Having had to make the choice again, I would ask more questions, just like you're doing on this forum, and not have the procedure. It has affected my cognitive function (I was recently diagnosed with a mild neurocognitive disorder) and I am just starting to feel like myself again, even during this 2nd round of chemo.
If you do choose a stem cell transplant, I pray you and your husband's experience is a more positive one. Every patient is different, so don't be embarrassed to get a second or even third opinion.
I wish you and your family well. Take care.
You asked about transplant experiences. I was diagnosed after quite a few doctors, over 3 continents, in March and April of 2014. I came back to the States, started a chemo regimen in June/July, and achieved "remission" in October 2014.
I was advised to undergo a stem cell transplant, and despite my reservations, and nagging instinct, went ahead with it in November/December 2014. I was 47 at the time, and am a mother of two, and I can honestly say it was the most challenging medical experience I've ever undergone. I am an engineer and naturally inquisitive, so I asked plenty of questions before the process began. I've been blessed with excellent doctors, and excellent care, but nothing they said prepared me for the side effects and the newness of this body.
I went back to work in April 2015. My disease mutated from secretory to nonsecretory, and my relapse was confirmed in August/September 2015 - 9 months post transplant. Having had to make the choice again, I would ask more questions, just like you're doing on this forum, and not have the procedure. It has affected my cognitive function (I was recently diagnosed with a mild neurocognitive disorder) and I am just starting to feel like myself again, even during this 2nd round of chemo.
If you do choose a stem cell transplant, I pray you and your husband's experience is a more positive one. Every patient is different, so don't be embarrassed to get a second or even third opinion.
I wish you and your family well. Take care.
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JinMingDao - Name: Kim
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 46
Re: Our family's newest challenge: multiple myeloma
BobbyG,
As JinMingDao stated, everyone's stem cell transplant experience is different. As a counterpoint, let me share with you my positive experience(s) to-date ...
One year ago at age 56, I was diagnosed with multiple myeloma and immediately began Revlimid, Velcade, and dexamethasone (RVD) treatment, which continued for approximately 5 months ending in early June. Starting in July, I consulted with several specialists across the US and subsequently decided to move forward with an autologous stem cell transplant (ASCT) procedure ASAP at MD Anderson in Houston. In early October, I underwent an ASCT along with participation in a trial involving natural killer cells.
Other than a nagging case of sinusitis while in the hospital which kept me from getting virtually any sleep, my stay there was uneventful (although altogether excruciatingly boring). I was released after ~3 weeks and was able to return to work almost immediately in early November.
Other than taking a daily anti-viral and thrice weekly Bactrim tablet, my life has pretty much returned to normal - albeit my taste buds post-melphalan took until Thanksgiving to fully recover (most annoying side effect of procedure for me!). At the beginning of December, I resumed daily exercise and running which, I believe, has contributed greatly to my recovery.
Post-ASCT, the only physical problem I have been dealing with day-in / day-out is an aggravating case of total body itchiness. I have been told that this is not that unusual and I have been combating the symptoms with various skin lotions and an occasional dose of Benadryl before bedtime.
All-in-all, I couldn't have hoped for a less eventful procedure. I too have a 6th grader at home and being away from her for three weeks (in another state no less) was perhaps the hardest part of my entire ordeal. Thank goodness for Facetime!
Going forward, I hope to begin participating in yet another trial in the next month or so involving elotuzumab (Empliciti) and lenalidomide (Revlimid) as part of a post-ASCT maintenance regimen. I can only hope that this treatment will go as smoothly as what I have experienced with other treatments to-date.
Transplant or no, I wish you the best of luck with whatever course of treatment you decide to move forward with.
Take care.
As JinMingDao stated, everyone's stem cell transplant experience is different. As a counterpoint, let me share with you my positive experience(s) to-date ...
One year ago at age 56, I was diagnosed with multiple myeloma and immediately began Revlimid, Velcade, and dexamethasone (RVD) treatment, which continued for approximately 5 months ending in early June. Starting in July, I consulted with several specialists across the US and subsequently decided to move forward with an autologous stem cell transplant (ASCT) procedure ASAP at MD Anderson in Houston. In early October, I underwent an ASCT along with participation in a trial involving natural killer cells.
Other than a nagging case of sinusitis while in the hospital which kept me from getting virtually any sleep, my stay there was uneventful (although altogether excruciatingly boring). I was released after ~3 weeks and was able to return to work almost immediately in early November.
Other than taking a daily anti-viral and thrice weekly Bactrim tablet, my life has pretty much returned to normal - albeit my taste buds post-melphalan took until Thanksgiving to fully recover (most annoying side effect of procedure for me!). At the beginning of December, I resumed daily exercise and running which, I believe, has contributed greatly to my recovery.
Post-ASCT, the only physical problem I have been dealing with day-in / day-out is an aggravating case of total body itchiness. I have been told that this is not that unusual and I have been combating the symptoms with various skin lotions and an occasional dose of Benadryl before bedtime.
All-in-all, I couldn't have hoped for a less eventful procedure. I too have a 6th grader at home and being away from her for three weeks (in another state no less) was perhaps the hardest part of my entire ordeal. Thank goodness for Facetime!
Going forward, I hope to begin participating in yet another trial in the next month or so involving elotuzumab (Empliciti) and lenalidomide (Revlimid) as part of a post-ASCT maintenance regimen. I can only hope that this treatment will go as smoothly as what I have experienced with other treatments to-date.
Transplant or no, I wish you the best of luck with whatever course of treatment you decide to move forward with.
Take care.
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LCharlier - Name: Lloyd
- When were you/they diagnosed?: 01-16-2015
- Age at diagnosis: 55
Re: Our family's newest challenge: multiple myeloma
You will get so many stories about the good and the bad of an autologous stem cell transplant (ASCT)and whether it was worth it to do it. Do all of your research and ask lots of questions. Then it boils down to what feels right for your husband and your family. Once you make that decision, don't look back later.
I had an ASCT and am glad that I did it. My goals for doing the transplant was to hit the myeloma hard and hopefully be drug free for an extended period of time. I achieved both goals to my satisfaction. It took 7 months post transplant to reach a complete response of 0 M-spike. I also was drug free for 35 months. I did my transplant in January 2010 when maintenance treatment was just starting. I didn't do maintenance and got 35 months free of drugs. I relapsed in December 2012 and have been on Revlimid and dex since then, with good control of my myeloma.
I wish your husband a good response to his treatment regimen. Take your time in making your decision about whether to do the transplant. I did mine after 9 rounds of Revlimid and dex and had no problems with harvesting stem cells for the transplant.
Nancy in Phila
I had an ASCT and am glad that I did it. My goals for doing the transplant was to hit the myeloma hard and hopefully be drug free for an extended period of time. I achieved both goals to my satisfaction. It took 7 months post transplant to reach a complete response of 0 M-spike. I also was drug free for 35 months. I did my transplant in January 2010 when maintenance treatment was just starting. I didn't do maintenance and got 35 months free of drugs. I relapsed in December 2012 and have been on Revlimid and dex since then, with good control of my myeloma.
I wish your husband a good response to his treatment regimen. Take your time in making your decision about whether to do the transplant. I did mine after 9 rounds of Revlimid and dex and had no problems with harvesting stem cells for the transplant.
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Our family's newest challenge: multiple myeloma
Hello BobbyG,
Welcome to the Forum, although I am sorry to hear about your husband having multiple myeloma.
As you've seen from the replies to your question that have come in already, experiences vary greatly from patient to patient. That's true in general with multiple myeloma, and especially true with how people respond to stem cell transplants (SCTs). So there is no consensus among patients or among researchers or clinicians to your question at this time.
However, there has been much discussion about the question of whether or not to do an up-front (early in multiple myeloma treatment) SCT or not. For example, this link will take you to a list of threads dealing with SCTs. Included in those threads are several where patients (or caregivers) posted during their SCTs, giving detailed information about how things went day-to-day.
If you are a data-oriented person (like I am), there are some clinical trials in progress trying to determine whether an up-front SCT should still be considered as part of the standard of care in this age of targeted therapies. The initial results of one of those trials, in France, were recently published at the ASH 2015 conference; here is the abstract for that presentation. The results show an advantage in terms of progression free survival (PFS) time and in terms of the percentage of patients achieving complete response (CR) for those who underwent the transplant, but no difference in terms of overall survival (OS).
As Nancy said, you and your husband should take some time to educate yourselves before making the decision. If your husband is not already being treated by a myeloma specialist (someone who only, or primarily, treats myeloma patients and does research in the field), I'd advise seeking one out and having them at least review your husband's case. Folks here on the forum can help you find myeloma specialists, if you want that help.
Best wishes to you and your husband. Please keep us posted on your decision and your husband's progress.
Mike
Welcome to the Forum, although I am sorry to hear about your husband having multiple myeloma.
As you've seen from the replies to your question that have come in already, experiences vary greatly from patient to patient. That's true in general with multiple myeloma, and especially true with how people respond to stem cell transplants (SCTs). So there is no consensus among patients or among researchers or clinicians to your question at this time.
However, there has been much discussion about the question of whether or not to do an up-front (early in multiple myeloma treatment) SCT or not. For example, this link will take you to a list of threads dealing with SCTs. Included in those threads are several where patients (or caregivers) posted during their SCTs, giving detailed information about how things went day-to-day.
If you are a data-oriented person (like I am), there are some clinical trials in progress trying to determine whether an up-front SCT should still be considered as part of the standard of care in this age of targeted therapies. The initial results of one of those trials, in France, were recently published at the ASH 2015 conference; here is the abstract for that presentation. The results show an advantage in terms of progression free survival (PFS) time and in terms of the percentage of patients achieving complete response (CR) for those who underwent the transplant, but no difference in terms of overall survival (OS).
As Nancy said, you and your husband should take some time to educate yourselves before making the decision. If your husband is not already being treated by a myeloma specialist (someone who only, or primarily, treats myeloma patients and does research in the field), I'd advise seeking one out and having them at least review your husband's case. Folks here on the forum can help you find myeloma specialists, if you want that help.
Best wishes to you and your husband. Please keep us posted on your decision and your husband's progress.
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Our family's newest challenge: multiple myeloma
I thank all of you for your responses. It has taken me this long to respond because I just wasn't ready to truly accept this diagnosis. I want to thank all of you and let you know you are all in our prayers.
My husband is going to collect stem cells in a week and we are on edge.I don't see any other solution and pray this is the best possible treatment.
Honestly, prayer, love and strength will get us through this. Thank you again for all your assistance.
My husband is going to collect stem cells in a week and we are on edge.I don't see any other solution and pray this is the best possible treatment.
Honestly, prayer, love and strength will get us through this. Thank you again for all your assistance.
Re: Our family's newest challenge: multiple myeloma
BobbyG,
My husband was also diagnosed in early January last year at the age of 58 and has been taking induction chemo since with 2 more treatments to go. He will have a stem cell transplant the first of June.
Good luck to both our husbands. I plan on posting about his transplant saga as I can.
My husband was also diagnosed in early January last year at the age of 58 and has been taking induction chemo since with 2 more treatments to go. He will have a stem cell transplant the first of June.
Good luck to both our husbands. I plan on posting about his transplant saga as I can.
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
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