Caregiver Of Spouse With Myeloma And Amyloidosis

Hello: I just got on board today to this site. I thought if I could help or meet others who are dealing with these diseases it would be good. My husband also has had heart failure since chemo. and has diabetes. He has taken oral chemo of dexamethasone and thalidomide. He is currently not producing new cells but suffers the damage from the diseases and his previous state of health and the side effects of the medications. I finally got a good heart to heart with one of our doctors at the clinic and she said my husband is on a downward curve. There will short ups, but we are going down. My husband is in denial and will not follow most of what the doctors ask now. Because of his emotional state, and temperment, I have re-evaluated my support system and I am getting emotional support. My faith with God carries me daily.

Dear Colleen,
I am sorry to hear you husband is having difficulties. I am 53 and was diagnosed with myeloma 3 yrs ago. After unsuccessful 12 months chemo treaments and unable to do stem cell transplant I was placed on Thalomid also. I was on it for 18 months and after it stopped working I tried the Velcade. My first treatment of it was this past month and it worked fantastic for me. I also have multiple sclerosis and other than the neuropathy onset with the Velcade I feel almost normal! I just hope it keeps on working. I am here if you need to talk. This is a terrible disease to live with and sometimes denial is a good thing. I was in denial for almost 2 years and I think that is what kept me going. I just went from day to day as if I was just going to be sick a short time and then I'd get better. I also didn't follow my doc's instructions to the letter. However, all three of my doctors (oncoligist, neurologist and family) worked with me and together with each other to meet my needs. I had them lower doses and change meds. I knew my body better than anyone and it worked for me. I think having an active participation in my treatment made me feel in control. Keep the faith. Darlene

Dear Colleen,
Glad to hear you are getting the support that you need. It is as important for you to take care of yourself. I am the one who is ill but I worry more about my mom healths than mine because I know the stress she is under trying to deal with my illness. She has finally caved in to my demands and started taking better care of herself. It has taken a load off me knowing that she is going to be ok. I'm not sure what you mean by your husband being in denial. When I first found out I had MM I was more in shock than denial. My worries were for my family than for me. I had to just go day by day. I was diagnosed a week after 911. My way of dealing with it was I felt I was luckier than the people that died in the towers. I had time to say my goodbyes. Then I realized that maybe this was a gift of time I was giving. Many people don't understand why I brush off my illness like it is nothing. Maybe they think I am in denial also. I'm not it is just my way of dealing with it. Take Care of yourself and may God Bless You Darlene

Thank you for your reply. I have not been posting lately. I have been involved with a caregivers support group that has been a godsend to me. My husband when diagnosed did not accept that he had a serious illness. He stayed in denial and then anger and depression. He went in and out of those for over a year and a half. I got support for myself that helped both of us. My husband also got involved in a phone support group sponsored by cancercare. He spoke with other people for over two months who various stages of multiple myeloma. That was the best medicine for him in recognizing what he had and what could be done.
My husband also takes meds for his depression and anger. His illness is in a state that is as close to a remission that there is. He only take thalomid now. We will evaluate his meds as time goes on. Because of his weight his options for treatment are limited, and so is his endurance. He has so far beat the odds, and is learning to live again and hopefully better.
Thanks,
Colleen L.

Dear Darlene:
My husband is doing better than the doctors expected. I expect it is due to the Great Physican above us in heaven.

My husband can no longer take the high dose steroids he was on for over a year as they would now kill him. He recovered from using the "dex" and now can walk and drive and cognitive skills are pretty normal. He does have side effects from the thalidomide but it has not progressed further. He has neuropathy in feet and hands and tremors, but that is it.
We are going to get some more heart tests done. He has problems there related to his amyloidosis. We are trying to keep his diabetes under control. He developed that five months into his oral chemo program. Building up his confidence, and his physical endurance is what we are working on. He is tired a lot. Of course he is morbidly over weight, so I remind him that it is weight that is our problem now not the diseases. He is a lot easier to work with that before. The medications for us have been worse than his symptoms so far.

I am involved in a support group called WellSpouse that have helped me a lot. I hope you and yours are well. My husband is only in stage one of the myeloma. The doctors have no magic bullet for the amyloidosis, they treat it with the same meds as they do the myeloma. Right now we are dealing with I.V. therapy for a case of osteromyelitis in my husband's lower left jaw. We are reviewing the meds.and need for further surgery. So, far it is responding well to the antibiotics.

Take care,
Colleen L.

Hi Colleen,

Have you seen any Amyloidosis specialists as well as MM? You might find that they will be able to help with the heart problems.

In the USA the main Amyloidosis treatment centres are Mayo, Rochester, and Boston. Memorial Sloan Kettering is a cancer center, with an amyloidosis specialist.

Ellen
Melbourne, Australia.
Wife of Jim who has Primary Amyloidosis caused by a Non Hodgkin's Lymphoma.

Hello: Thanks for the information. The Amyloidosis Network posts treatment options and those are the three places to go. My husband was not going to go anywhere till we spoke to man who heads Amyloidosis Network. So, my husband is stable and is on Thalidomide alone now. He is not a candidate for any transplant. So, if things change they will try the more traditional chemo way with one of the new drugs. We knew we had few options, but the top three are the only places to go first!
Colleen L.

Hi C... I read your messages with great interest. Mu husband was diagnosed with MM in June 2005 (advanced MM) , has been on chemo for the past 6 months (steroids and vincristine)and now will have a stem cell transplant within weeks..... but he has completely shut me out in terms of helping him with this next big step. I used to go with him to the Dr's appointments and with his chemo but now he is calling on his son ( from a previous marriage) to go with him. I know I must step back as it is his call but I worry about him coming home from his transplant and how he will be cared for in his recovery. Any tips for me? pls advise