Hi Maya
I am Croatian and my mom has been diagnosed with myeloma 2 months ago. She has been taking therapy in Merkur hospital. Let me know if you need any info. Currently she is on the third cycle of induction therapy and in September probably SCT will follow.
To everyone here: these two months I read everything on the site and would wish you all the best.
Forums
-
Lavanda - Name: Lavanda
- Who do you know with myeloma?: Mom
- When were you/they diagnosed?: 2015
- Age at diagnosis: 53
Re: Is multiple myeloma really that bad?
Hi Maya,
I'm so sorry to hear of your husband's health issues. My dad was diagnosed 15 years ago with smoldering myeloma, meaning that it was there but didn't require treatment at that time. In 2007, he started treatment and lived nearly 8 more years.
A couple things I learned from my dad is to always remain positive and optimistic. Dad was able to continue to do most of the things he loved doing right up til the last year of his life. He continued gardening, fishing, etc. He was also open to experimental treatments, but unfortunately he was too far into the disease to be chosen to participate. I've also heard of stem cell transplants etc., another option he didn't qualify for.
With all that said, I encourage you to ask a lot of questions and seek all options possible, no matter his diagnosis.
When the treatments were no longer effective, he stopped treatment and went under hospice care. They were fabulous and allowed him to stay comfortable in his own home for the next 7 weeks, until he left us on May 12th.
I will say that I believe there has been a lot of research and technology since he was diagnosed in 2000, and believe that research and advancement will continue. I think it's great that you found this forum for both knowledge and support. My prayers go out to you and your family.
Karen
I'm so sorry to hear of your husband's health issues. My dad was diagnosed 15 years ago with smoldering myeloma, meaning that it was there but didn't require treatment at that time. In 2007, he started treatment and lived nearly 8 more years.
A couple things I learned from my dad is to always remain positive and optimistic. Dad was able to continue to do most of the things he loved doing right up til the last year of his life. He continued gardening, fishing, etc. He was also open to experimental treatments, but unfortunately he was too far into the disease to be chosen to participate. I've also heard of stem cell transplants etc., another option he didn't qualify for.
With all that said, I encourage you to ask a lot of questions and seek all options possible, no matter his diagnosis.
When the treatments were no longer effective, he stopped treatment and went under hospice care. They were fabulous and allowed him to stay comfortable in his own home for the next 7 weeks, until he left us on May 12th.
I will say that I believe there has been a lot of research and technology since he was diagnosed in 2000, and believe that research and advancement will continue. I think it's great that you found this forum for both knowledge and support. My prayers go out to you and your family.
Karen
Re: Is multiple myeloma really that bad?
Hi Maya.
First, let me echo everyone else in telling you I'm sorry that your husband has myeloma. I want to assure you that life does go on after a myeloma diagnosis. As has been noted by others, myeloma is very individual, depending on genetics and a host of other factors, so all we can do is tell you our experiences. I was diagnosed 6 years ago and was pretty sick by the time I was diagnosed. I am fortunate that I have a job that can be done by telework and an employer that allows it. I worked through my initial treatment and through my stem cell transplant, with the exception of a few weeks when I was sick from the associated chemotherapy drugs. I am still working and living my life, including traveling both for work and for vacations.
There are some adjustments. I get fatigue from the drugs, so I have adjusted my schedule. For example, no more night meetings. There are other side effects, such as constipation, so Miralax is my friend.
What I'm saying is that having myeloma is not the end of the world. It is manageable.
Good luck and please keep us informed. We are all here for you and your husband.
Dana A
First, let me echo everyone else in telling you I'm sorry that your husband has myeloma. I want to assure you that life does go on after a myeloma diagnosis. As has been noted by others, myeloma is very individual, depending on genetics and a host of other factors, so all we can do is tell you our experiences. I was diagnosed 6 years ago and was pretty sick by the time I was diagnosed. I am fortunate that I have a job that can be done by telework and an employer that allows it. I worked through my initial treatment and through my stem cell transplant, with the exception of a few weeks when I was sick from the associated chemotherapy drugs. I am still working and living my life, including traveling both for work and for vacations.
There are some adjustments. I get fatigue from the drugs, so I have adjusted my schedule. For example, no more night meetings. There are other side effects, such as constipation, so Miralax is my friend.
What I'm saying is that having myeloma is not the end of the world. It is manageable.
Good luck and please keep us informed. We are all here for you and your husband.
Dana A
-
darnold - Name: Dana Arnold
- Who do you know with myeloma?: self
- When were you/they diagnosed?: May 2009
- Age at diagnosis: 52
Re: Is multiple myeloma really that bad?
Hi guys,
First of all, thank you all for your kind words.
Quick update: I haven't even realized it's been a month from my last post. Soon after my last post, my husband's treatment started. Doctor decided to go with cyclophosphpamide, thalidomide, and dexamethasone (CTD) protocol and, for now, everything looks as good as it can be. He's dealing with some side effects, which most of people here experienced, but it's bearable. We have different, psychological, problems tho - he 'feels' more sick than he really is, and he developed a 'lovely' phobia of blood clots, and I'm having a hard time dealing with all these changes in his head and our not so positive surrounding (ok, the second one might be me overreacting, because I'm overprotective person). Is there a topic where I can whine about it? Any advice on how to get him back into right and positive mindset?
First of all, thank you all for your kind words.
Quick update: I haven't even realized it's been a month from my last post. Soon after my last post, my husband's treatment started. Doctor decided to go with cyclophosphpamide, thalidomide, and dexamethasone (CTD) protocol and, for now, everything looks as good as it can be. He's dealing with some side effects, which most of people here experienced, but it's bearable. We have different, psychological, problems tho - he 'feels' more sick than he really is, and he developed a 'lovely' phobia of blood clots, and I'm having a hard time dealing with all these changes in his head and our not so positive surrounding (ok, the second one might be me overreacting, because I'm overprotective person). Is there a topic where I can whine about it? Any advice on how to get him back into right and positive mindset?
-
Maya - Who do you know with myeloma?: husband
- When were you/they diagnosed?: August 2015
- Age at diagnosis: 59
Re: Is multiple myeloma really that bad?
Hi Maya,
Do you and your husband stay in Croatia for the treatment, or are they going to continue the same treatment in Slovenia?
Do you and your husband stay in Croatia for the treatment, or are they going to continue the same treatment in Slovenia?
-
Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Is multiple myeloma really that bad?
Sorry, LM, I somehow missed your post. We're traveling to therapy every week, but doc said only a few more visits and after that it'll be only pills at home and monthly Zometa.
-
Maya - Who do you know with myeloma?: husband
- When were you/they diagnosed?: August 2015
- Age at diagnosis: 59
Re: Is multiple myeloma really that bad?
How is your husband taking the treatment and which combination of medicine are they using?
-
Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Is multiple myeloma really that bad?
Cytoxan + thalidomide + dexamethasone (CTD) once a week in hospital and one thalidomide pill at home every day.
-
Maya - Who do you know with myeloma?: husband
- When were you/they diagnosed?: August 2015
- Age at diagnosis: 59
Re: Is multiple myeloma really that bad?
The CTD regimen seems to be fairly popular in Europe.
-
Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
29 posts
• Page 3 of 3 • 1, 2, 3