Hello,
My name is Summer. My husband if 44 years old and was just told in December that he has multiple myeloma. He fell and broke his hip in October and it was fixed and he was released. His health continued to go down hill and he went back into the hospital the week of Christmas. They ran many test and then found out he has multiple myeloma. We have 4 children together and have been together for 17 years.
He is getting chemo. He is on his third round of chemo and one round left. He is sick all the time and vomiting. He was 200 pounds when this all started and is now 138 pounds. Is this normal? My children are 16,15,11 and 8 and I am so scared for what the future holds. My older kids are scared because of course their dad just doesn't look like himself.
Just looking for support and see what other patients are going through. THANK YOU for any insight any of you can give me.
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Summerx5 - Who do you know with myeloma?: my husband
- When were you/they diagnosed?: December 2013
- Age at diagnosis: 44
Re: Husband diagnosed with multiple myeloma in December
Hi Summer, I am sorry to hear about the struggles that your husband is having with myeloma. iF you could fill us in with more details as to what sort of chemotherapy he is getting, others might be able to give you feedback also.
When I was taking induction chemo with Velcade, I was given Kytril by IV before the infusion of Velcade. Kytril is a powerful anti-nauseant. It is so strong that it slows the whole digestive system down and I then needed to take natural laxatives (Senokot) to help with that. i was able to eat, although I preferred mild foods such as apple sauce and yogurt, or hot soups. I also took some of the packaged nutrient rich drinks such as Ensure. They are high in calories and nutrients. The medical people didn't want me to lose any weight at that time of having treatments.
Hope he starts to feel better soon and is able to put back on some weight too!
When I was taking induction chemo with Velcade, I was given Kytril by IV before the infusion of Velcade. Kytril is a powerful anti-nauseant. It is so strong that it slows the whole digestive system down and I then needed to take natural laxatives (Senokot) to help with that. i was able to eat, although I preferred mild foods such as apple sauce and yogurt, or hot soups. I also took some of the packaged nutrient rich drinks such as Ensure. They are high in calories and nutrients. The medical people didn't want me to lose any weight at that time of having treatments.
Hope he starts to feel better soon and is able to put back on some weight too!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Husband diagnosed with multiple myeloma in December
In October I filed for divorce and in early December I decided that wasn't what I wanted. The week of Christmas was when we found out he has cancer. Since the time I filed he was living with his parents and he still is and they will not let me see him. So I don't go to his doctor appointments or anything.
He has told me what he is on but I didn't write it down and I just can't remember. He has been on quite a few different medicines for the vomiting and some have helped but not for long. He has also been on quit a few different medicines for the pain. The one he is on now is in the form of a patch and has to be changed every 72 hours.
I feel like I am living a nightmare. The man i love is going through so much right now and I am unable to be there for him. He says he wants me there but can't deal with is parents right now it's too much stress.
I wish I could give you all more information but i just don't have it. All I know is what he tells me and tells me a lot but stupid me I didn't write it down. He does tell me that his numbers are going down and that when he goes in remission that they will then do a stem cell transplant. I know he has a long road ahead of him and I hope I will be there with him to go through it all.
He has told me what he is on but I didn't write it down and I just can't remember. He has been on quite a few different medicines for the vomiting and some have helped but not for long. He has also been on quit a few different medicines for the pain. The one he is on now is in the form of a patch and has to be changed every 72 hours.
I feel like I am living a nightmare. The man i love is going through so much right now and I am unable to be there for him. He says he wants me there but can't deal with is parents right now it's too much stress.
I wish I could give you all more information but i just don't have it. All I know is what he tells me and tells me a lot but stupid me I didn't write it down. He does tell me that his numbers are going down and that when he goes in remission that they will then do a stem cell transplant. I know he has a long road ahead of him and I hope I will be there with him to go through it all.
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Summerx5 - Who do you know with myeloma?: my husband
- When were you/they diagnosed?: December 2013
- Age at diagnosis: 44
Re: Husband diagnosed with multiple myeloma in December
Hi Summer, That is a really difficult situation to be in with your husband, but maybe when he is feeling better he will be more able to talk with you more too. I have talked to people who lost a lot of weight during their treatments, though. It happens quite often I think. Wishing you all the best and hope you and the children stay strong too!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Husband diagnosed with multiple myeloma in December
Thank you very much for replying. He does talk to me a lot about it I just didn't write it down and hopefully when he is stronger then he can talk to his parents. It is nice to know that other people have lost a lot of weight during this time as well.
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Summerx5 - Who do you know with myeloma?: my husband
- When were you/they diagnosed?: December 2013
- Age at diagnosis: 44
Re: Husband diagnosed with multiple myeloma in December
Life is strange...the only thing I can tell you is that when I fell ill the first thing that happened was rapid weight loss. And I was totally exhausted (hemoglobin 7.6). After just a few months I had regained strength and a bit of weight. The period around the transplant was tough, it is for most people. But if you see me now and do not know I have this disease, you would never in a million year guess I am ill.
So I hope the same will happen to your husband. It really took me just 3-4 months to go back to normal energy levels, and after the transplant a couple of months to hit the pool again for a nice relaxing swim. Nobody nows how long remission will last or how long he will survive, but at least you and your family can hope for the return of some normality at some point, and I hope that moment will come soon. A hug
So I hope the same will happen to your husband. It really took me just 3-4 months to go back to normal energy levels, and after the transplant a couple of months to hit the pool again for a nice relaxing swim. Nobody nows how long remission will last or how long he will survive, but at least you and your family can hope for the return of some normality at some point, and I hope that moment will come soon. A hug
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Annamaria - Name: Annamaria
- Who do you know with myeloma?: I am a patient
- When were you/they diagnosed?: April 2012
- Age at diagnosis: 58
Re: Husband diagnosed with multiple myeloma in December
I lost 50 lbs during my initial therapy with Velcade after I was diagnosed, your husband has lost more than that. Losing weight is not that uncommon but I believe the amount that your husband and I lost is more than normal. More typically initially people gain weight because they are taking dexamethasone which usually causes a big increase in appetite.
That was my case at first but then I stopped having any appetite and food lost most of its taste. I could go for a few days without feeling hungry at all and I would have to force myself to eat. Though all of this it seemed I was always able to at least get some Ensure down.
The loss of appetite and food losing taste was believed to be caused by nerve damage from Velcade. After the Velcade was stopped eventually my appetite eventually returned and I have regained most of that weight over the last two years and returned to biking and swimming. The best cycling shape I have ever been in was 6 months after my SCT.
It is a difficult spot to be in, it is important to try and keep good nutrition as the therapy is hard on the body. It is also tough psychologically to see oneself wasting away wondering if it is ever going to end. This is one of the toughest periods but if the treatments are working based on mine and others experiences a really good recovery and remission from all this is not a false hope, but as you will learn from reading the Beacon there can be a wide variation in the response to myeloma treatment.
That was my case at first but then I stopped having any appetite and food lost most of its taste. I could go for a few days without feeling hungry at all and I would have to force myself to eat. Though all of this it seemed I was always able to at least get some Ensure down.
The loss of appetite and food losing taste was believed to be caused by nerve damage from Velcade. After the Velcade was stopped eventually my appetite eventually returned and I have regained most of that weight over the last two years and returned to biking and swimming. The best cycling shape I have ever been in was 6 months after my SCT.
It is a difficult spot to be in, it is important to try and keep good nutrition as the therapy is hard on the body. It is also tough psychologically to see oneself wasting away wondering if it is ever going to end. This is one of the toughest periods but if the treatments are working based on mine and others experiences a really good recovery and remission from all this is not a false hope, but as you will learn from reading the Beacon there can be a wide variation in the response to myeloma treatment.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
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