My husband was diagnosed one month before his 45th birthday. He will be 50 in April. When he was first diagnosed, his numbers were very high and he was started on a course of Revlimid/Dex. He had a complete response and after 17 months, he took a break. Three months later his proteins were on the rise and he wasn't feeling well. He started back on Revlimid/ Dex but did not respond. After several months we started looking into an autologous stem-cell transplant. He tried Velcade in conjunction with Revlimid to bring down the numbers prior to transplant, but had severe neuropathy almost immediately and discontinued the Velcade.
In July of 2011 he had an autologous stem-cell transplant. The tandem transplant followed in October of 2011. At the 6-month biopsy, he had had a complete response. At the 1-year biopsy, his numbers were on the rise. He had the transplants in another city so on a visit to his local oncologist we realized that in fact, the cancer is active again.
That was a month ago. We are struggling getting the approval for Revlimid. As of today, we've been going around and around for over 3 weeks. Meanwhile, he has a "massive" clot in his leg and new pain in his neck and shoulder. I'm not sure if the new pain is a pulled muscle or cancer related.
We have always been very positive people, my husband still works everyday, but lately I am finding it more difficult to stay positive. One of the oncologists likened Multiple Myeloma to a game of kick-the-can. I thought we had kicked our can pretty far down the road, but it seems to have rolled back towards us and seems much heavier and harder to kick right now.
I am hoping that there is someone out there with a similar story that would like to share experiences.
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Re: Worried Wife looking for support
Hi Beth,
My myeloma journey has been full of ups and downs as most of us have with this nasty disease. I never achieved CR with any of my treatments until I had an allogenic transplant in April 2011 (I posted my story/treatments in autograft vs allograft). Since May this year my paraprotein has not been detected so I am in remission - and very thankful to be there.
Dont give up hope. All the best.
Libby
My myeloma journey has been full of ups and downs as most of us have with this nasty disease. I never achieved CR with any of my treatments until I had an allogenic transplant in April 2011 (I posted my story/treatments in autograft vs allograft). Since May this year my paraprotein has not been detected so I am in remission - and very thankful to be there.
Dont give up hope. All the best.
Libby
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LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: Worried Wife looking for support
Libby,
Did you have an auto transplant first? I am so glad that you are in remission! How long was the recovery from your allo transplant?
Thanks for sharing, Beth
Did you have an auto transplant first? I am so glad that you are in remission! How long was the recovery from your allo transplant?
Thanks for sharing, Beth
Re: Worried Wife looking for support
Hi Beth,
I had an auto in june 2010 - essentially it didn't work. My paraprotein was reduced by 16% and 3 months after the auto the myeloma had started growing again. During the transplant I developed neutropenic enterocolitis which resulted in my heart having a hissy fit, a bit of renal failure and lung collapse. As a result of this another auto prior to an allo was out of the question. I had a mini allo as an outpatient at the Alfred Hospital, Melbourne, Australia, this involved minimal chemo and reduced intensity total body irradiation. I had to stay close to the hospital but was not hospitalised for the procedure. I was tired but it was the best treatment I have had so far. I do have graft vs host disease but I can live with it.
Stay positive,
Libby
I had an auto in june 2010 - essentially it didn't work. My paraprotein was reduced by 16% and 3 months after the auto the myeloma had started growing again. During the transplant I developed neutropenic enterocolitis which resulted in my heart having a hissy fit, a bit of renal failure and lung collapse. As a result of this another auto prior to an allo was out of the question. I had a mini allo as an outpatient at the Alfred Hospital, Melbourne, Australia, this involved minimal chemo and reduced intensity total body irradiation. I had to stay close to the hospital but was not hospitalised for the procedure. I was tired but it was the best treatment I have had so far. I do have graft vs host disease but I can live with it.
Stay positive,
Libby
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LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: Worried Wife looking for support
Hi this is my very first visit to this site...I was diagnosed with myeloma in 2009 at age 39.
I had a auto, stemcell transplant on Dec, 6th 2011. Everything was going perfectly fine until Nov.2012..After my bone marrow the results showed that my cells spiked really high...I was of coursed devastated as you could imagine that everything was fine with the last bone marrow 3 mths before.. I am now on Revlimid, Velcade and dexamethasone and I am praying to God that it works..My Dr's thinks that it will..
Dealing with this disease takes a lot from the patient, your husband needs your support all that you could ever imagine. I had to be the support line for my family because they were all torn apart upon hearing of the diagnosed..My husband was the hardest to deal with he took it so very hard..my two boys (23,17) only knew after I did the transplant and was out from the hospital I am yet to tell them it reoccured.. my (3) sisters,(2) brothers, nieces and nephews they too were broken hearten..Up to this day my mom does not know I have myeloma..
I know its a lot when nothing seems to working as you would like it to..but please find ways and means to be strong..keep fighting and stand strong with your husband..
There is nothing like prayers try hard keep praying everyday and keep your faith alive..
I know it really hard but nothing is impossible with God..
I will remember you in my prayer..
Just be strong..
I had a auto, stemcell transplant on Dec, 6th 2011. Everything was going perfectly fine until Nov.2012..After my bone marrow the results showed that my cells spiked really high...I was of coursed devastated as you could imagine that everything was fine with the last bone marrow 3 mths before.. I am now on Revlimid, Velcade and dexamethasone and I am praying to God that it works..My Dr's thinks that it will..
Dealing with this disease takes a lot from the patient, your husband needs your support all that you could ever imagine. I had to be the support line for my family because they were all torn apart upon hearing of the diagnosed..My husband was the hardest to deal with he took it so very hard..my two boys (23,17) only knew after I did the transplant and was out from the hospital I am yet to tell them it reoccured.. my (3) sisters,(2) brothers, nieces and nephews they too were broken hearten..Up to this day my mom does not know I have myeloma..
I know its a lot when nothing seems to working as you would like it to..but please find ways and means to be strong..keep fighting and stand strong with your husband..
There is nothing like prayers try hard keep praying everyday and keep your faith alive..
I know it really hard but nothing is impossible with God..
I will remember you in my prayer..
Just be strong..
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Jenny - Name: Jenny
- Who do you know with myeloma?: a friend
- When were you/they diagnosed?: I was diagnosed in 2009
- Age at diagnosis: 39
Re: Worried Wife looking for support
I have not had to fight multiple myeloma as long as you and your husband (I was diagnosed last Memorial day and had auto transplant in November.)
I can imagine how hard it is not to get discouraged and depressed after years of fighting this. I can tell you what my husband has done that is such a blessing to in case that helps encourage you.
1. Just be there as a friend. My husband and Jesus are the only ones there in the middle of the night when I am scared. You cannot imagine how comforting it is not to be alone- to have a warm body there.
2. Do not act scared- act confident but kind -My husbands strength and confidence are so reassuring. He lets me cry if I need to, but we do not talk about being afraid or doomsday scenarios.
3. He never makes me feel unattractive even though I am bald and now that I am 70 days from transplant I am just growing this weird whispy feathery gray hair. I wear a hat except when I sleep or take a bath or when I wear a wig - but he never acts different towards me. He still comes up behind me and hugs me or tells me I am beautiful.
4. His motto is that we live one day at a time. He says that he could get hit by a car tomorrow too.
5.One thing that helps me is to remember that no one lives forever. Even if we were 75 years old, I think it is hard to accept our mortality. The only thing that statement is supposed to do is keep you from feeling that this is the most awful thing in the world. It is hard but life is incredibly precious.
Keep being there and walking through it with him. You are doing more than you can imagine.
Love
C
I can imagine how hard it is not to get discouraged and depressed after years of fighting this. I can tell you what my husband has done that is such a blessing to in case that helps encourage you.
1. Just be there as a friend. My husband and Jesus are the only ones there in the middle of the night when I am scared. You cannot imagine how comforting it is not to be alone- to have a warm body there.
2. Do not act scared- act confident but kind -My husbands strength and confidence are so reassuring. He lets me cry if I need to, but we do not talk about being afraid or doomsday scenarios.
3. He never makes me feel unattractive even though I am bald and now that I am 70 days from transplant I am just growing this weird whispy feathery gray hair. I wear a hat except when I sleep or take a bath or when I wear a wig - but he never acts different towards me. He still comes up behind me and hugs me or tells me I am beautiful.
4. His motto is that we live one day at a time. He says that he could get hit by a car tomorrow too.
5.One thing that helps me is to remember that no one lives forever. Even if we were 75 years old, I think it is hard to accept our mortality. The only thing that statement is supposed to do is keep you from feeling that this is the most awful thing in the world. It is hard but life is incredibly precious.
Keep being there and walking through it with him. You are doing more than you can imagine.
Love
C
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antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
Re: Worried Wife looking for support
Thanks, Jenny and C, for the encouragement. I was definitely venting when I wrote that post. My husband and I always find something to be positive about and realize that there are many people in more difficult situations than us. I will continue to cope by managing his health care and battling the myeloma by his side.
Gratefully, Beth
Gratefully, Beth
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