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Re: Is multiple myeloma really that bad?
@Maya, what country are you in ?
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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?
We're in Slovenia, but treatment will be done in Croatia. After we researched all options we decided that's the best we can do.
We have a diagnosis now – IgA kappa multiple myeloma which is progressing very slowly and has affected nothing but bones. All doctors we talked to are very optimistic (at least I like to think they are and that they aren't saying nice and positive things just to say something), and his treatment will start next Friday.
I have to say, we both feel much better now than two weeks ago when we didn't know anything except he might be dead in a year. I mean, it's not the best diagnosis ever, but it's easier now when we know all the facts and most of the options – suddenly this doesn't sound like a death sentence but more like a rough trip.
There's one more thing I wanted to ask. We heard quite a lot of 'your life will never be normal again' and 'he'll never get to work again' things lately. I'm not worried about the work part, but that 'no normal life ever again' is confusing me? I assumed if therapy is successful, he'll be able to live normally not abandoning things he used to do before his diagnosis. Am I wrong?
We have a diagnosis now – IgA kappa multiple myeloma which is progressing very slowly and has affected nothing but bones. All doctors we talked to are very optimistic (at least I like to think they are and that they aren't saying nice and positive things just to say something), and his treatment will start next Friday.
I have to say, we both feel much better now than two weeks ago when we didn't know anything except he might be dead in a year. I mean, it's not the best diagnosis ever, but it's easier now when we know all the facts and most of the options – suddenly this doesn't sound like a death sentence but more like a rough trip.
There's one more thing I wanted to ask. We heard quite a lot of 'your life will never be normal again' and 'he'll never get to work again' things lately. I'm not worried about the work part, but that 'no normal life ever again' is confusing me? I assumed if therapy is successful, he'll be able to live normally not abandoning things he used to do before his diagnosis. Am I wrong?
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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?
My husband was diagnosed in April 2014. So much went wrong in treatment it's astounding. 5 fractured vertebrae, multiple rib fractures, and a fist-sized hole in the ilium caused by a tumor, which fractured during radiation treatment leaving him unable to walk for over 6 months.
Fast forward. This year we've been to NY, London, Scotland, Alaska, and are on our way to Dubrovnik in late September. My husband has been hiking, birdwatching, fly fishing. We have sex!!!
He's not back to where he was before cancer. He's 7 cm (2.75 inches) shorter, he still has some pain in the hip, and he has kyphosis in the spine. Cytoxan damaged his lungs, but that seems stable, and he's been able to build back remarkable amounts of cardio fitness and endurance. We go to the gym or to yoga nearly every day.
He doesn't feel he has enough balance / stability yet to go bicycling, and he won't ski or scuba dive anymore. Other than that, he can do all the things he wants to do but needs to manage his energy and be more cautious.
Life is NOT the same. But life is excellent.
Lisa
Fast forward. This year we've been to NY, London, Scotland, Alaska, and are on our way to Dubrovnik in late September. My husband has been hiking, birdwatching, fly fishing. We have sex!!!
He's not back to where he was before cancer. He's 7 cm (2.75 inches) shorter, he still has some pain in the hip, and he has kyphosis in the spine. Cytoxan damaged his lungs, but that seems stable, and he's been able to build back remarkable amounts of cardio fitness and endurance. We go to the gym or to yoga nearly every day.
He doesn't feel he has enough balance / stability yet to go bicycling, and he won't ski or scuba dive anymore. Other than that, he can do all the things he wants to do but needs to manage his energy and be more cautious.
Life is NOT the same. But life is excellent.
Lisa
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LisaE - Name: Lisa
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 67
Re: Is multiple myeloma really that bad?
Hello Maya
Your original question might have been 'is there life after a myeloma diagnosis', No cancer diagnosis is welcome, particularly a rare cancer where getting a dedicated specialist to treat the patient may be necessary, combned with the issue of getting an early enough diagnosis. The majority of myeloma patients present at late stage. That said life expectancy for myeloma patients has improved much over the last decade with more targeted.drug regimes and stem cell transplants and bone strengthening treatment. The outcome for any individual will be specifc to their situation one cannot generalise.
As to how life changes with myeloma. This will depend on the age, prior health and psychological make up of the person before the diagnosis and afterwards, as well as their support system and personal resources. Some people manage to continue to work, but I think this is not the majority. Most people diagnosed are not young, but many forum members do appear to be those that are younger and they will give you information on their experiences..No one can say how long anyone will live. People of all ages get ill / have accidents etc and can die from other causes, so best to focus on living as well as you can and in the present.
Some people may have a lot of bone lesions and damage but with drugs / treatment keeping the myeloma under control manage not to loose too much in terms of the life they had pre-myeloma.
Sometimes one has to get used to a 'new and changing me' as the body may change with treatment, one may be more prone to infections, which is common, so keeping away from children and people who have an infection can help. Starting off with a good immune system helps to prevent infection. One may find pain / fracture risk and tiredness limits the amount and type of of physical activity one can manage safely. But one can still remain independent in the main, just by adjusting ones expectations and pacing oneself.
If someone has been a very physically active person engaging in sports etc. this may still be possible but it should be discussed with your doctors and physiotherapist to ascertain the limits and risks for oneself individually.
As has been said by others no one is the same as another and I think a positive determined mental attitude helps towards leading as normal and good a life as possible, even with the changes to ones body and treatment affects. Living in the present is also helpful, no one can predict the future even if they do not have myeloma.
I hope your husband gets the best treatment to bring the disease under control and has a long remission from the induction and stem cell transplant.
Edna
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Your original question might have been 'is there life after a myeloma diagnosis', No cancer diagnosis is welcome, particularly a rare cancer where getting a dedicated specialist to treat the patient may be necessary, combned with the issue of getting an early enough diagnosis. The majority of myeloma patients present at late stage. That said life expectancy for myeloma patients has improved much over the last decade with more targeted.drug regimes and stem cell transplants and bone strengthening treatment. The outcome for any individual will be specifc to their situation one cannot generalise.
As to how life changes with myeloma. This will depend on the age, prior health and psychological make up of the person before the diagnosis and afterwards, as well as their support system and personal resources. Some people manage to continue to work, but I think this is not the majority. Most people diagnosed are not young, but many forum members do appear to be those that are younger and they will give you information on their experiences..No one can say how long anyone will live. People of all ages get ill / have accidents etc and can die from other causes, so best to focus on living as well as you can and in the present.
Some people may have a lot of bone lesions and damage but with drugs / treatment keeping the myeloma under control manage not to loose too much in terms of the life they had pre-myeloma.
Sometimes one has to get used to a 'new and changing me' as the body may change with treatment, one may be more prone to infections, which is common, so keeping away from children and people who have an infection can help. Starting off with a good immune system helps to prevent infection. One may find pain / fracture risk and tiredness limits the amount and type of of physical activity one can manage safely. But one can still remain independent in the main, just by adjusting ones expectations and pacing oneself.
If someone has been a very physically active person engaging in sports etc. this may still be possible but it should be discussed with your doctors and physiotherapist to ascertain the limits and risks for oneself individually.
As has been said by others no one is the same as another and I think a positive determined mental attitude helps towards leading as normal and good a life as possible, even with the changes to ones body and treatment affects. Living in the present is also helpful, no one can predict the future even if they do not have myeloma.
I hope your husband gets the best treatment to bring the disease under control and has a long remission from the induction and stem cell transplant.
Edna
.
Re: Is multiple myeloma really that bad?
Maya wrote:
Ya, Slovenia is a small country (my mom lived the in the 1960s for a year), I doubt the doctors there have experience with myeloma.
If you must leave Slovenia for medical treatment, does the Slovenian ministry of health pay for it?
We're in Slovenia, but treatment will be done in Croatia. After we researched all options we decided that's the best we can do.
Ya, Slovenia is a small country (my mom lived the in the 1960s for a year), I doubt the doctors there have experience with myeloma.
If you must leave Slovenia for medical treatment, does the Slovenian ministry of health pay for it?
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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?
@Lisa - Thank you so much for sharing your experience. I'm really glad for your husband and I hope I'll be able to write something similar to your post in a year.
@Edna - Thank you for your input. I am aware there is no general prognosis here and I'm not looking for that. I was just confused with all those 'you'll never be able to live your life again ' sayings, which are total opposite of what doctors said and what we feel. We're not so active kind of people, don't do extreme sports or something like that. Walking, small road trips, and fishing are things that are keeping us occupied (besides work), and when people started saying he won't be able to do any of that again even if he enters complete remission, well ... it didn't sound good. He even started considering not starting treatment as apparently he'll be in worse shape after than he is now.
@Little Monkey - Normal health insurance here is not covering such things, but since he's working in Croatian company, we managed to get everything except travel expenses covered. I don't know how good or bad our doctors are, or how much they know about this disease, but my husband didn't like their approach (i.e., their first response to his results was to send him to radiation even before all tests were done), and there was nothing to do except trying to find something better.
@Edna - Thank you for your input. I am aware there is no general prognosis here and I'm not looking for that. I was just confused with all those 'you'll never be able to live your life again ' sayings, which are total opposite of what doctors said and what we feel. We're not so active kind of people, don't do extreme sports or something like that. Walking, small road trips, and fishing are things that are keeping us occupied (besides work), and when people started saying he won't be able to do any of that again even if he enters complete remission, well ... it didn't sound good. He even started considering not starting treatment as apparently he'll be in worse shape after than he is now.
@Little Monkey - Normal health insurance here is not covering such things, but since he's working in Croatian company, we managed to get everything except travel expenses covered. I don't know how good or bad our doctors are, or how much they know about this disease, but my husband didn't like their approach (i.e., their first response to his results was to send him to radiation even before all tests were done), and there was nothing to do except trying to find something better.
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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?
Maya
My husband was diagnosed early in 2014. He had radiation that failed (plasmacytoma on rib).
Then after the rib fractured more then once from minimal movement, it was removed. He then had 6 months of chemo. He worked throughout and is still working, took one week off for surgery and worked from home for 2 weeks. He does wear out very quickly and has to be careful with the heat. He had 3 bone marrow biopsies during this time.
May treatments go well for your loved one.
My husband was diagnosed early in 2014. He had radiation that failed (plasmacytoma on rib).
Then after the rib fractured more then once from minimal movement, it was removed. He then had 6 months of chemo. He worked throughout and is still working, took one week off for surgery and worked from home for 2 weeks. He does wear out very quickly and has to be careful with the heat. He had 3 bone marrow biopsies during this time.
May treatments go well for your loved one.
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Jmiller - Name: Harleygirl
- Who do you know with myeloma?: My husband
- When were you/they diagnosed?: January 2014
- Age at diagnosis: 57
Re: Is multiple myeloma really that bad?
Maya,
I hope for the best you and your husband; many people, including those with multiple myeloma on this site, continue to live a relatively normal life, including fishing, walking, etc.
Where are they sending your husband, KBC in Zagreb ?
I hope for the best you and your husband; many people, including those with multiple myeloma on this site, continue to live a relatively normal life, including fishing, walking, etc.
Where are they sending your husband, KBC in Zagreb ?
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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?
@Jmiller - thank you for your words of encouragement. I can't express how much it means to me to.
@Little Monkey - yes, we were told that's our best chance.
@Little Monkey - yes, we were told that's our best chance.
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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?
Maya-
I worked for 5 more years after my diagnosis with myeloma. The only times that I took off for medical leave were for a fractured arm from the myeloma, my stem cell transplant and for knee replacement surgery. I retired when I reached full retirement age here in the US. It was sooner than I had planned to retire because I was having enough difficulty with fatigue and cognitive tasks that it seemed like a good time. I was a full time physical therapist.
The only times that I restricted my activities were following the above medical issues. Once I recovered from each of them I resumed my travels and other activities. The things that you and your husband enjoy doing sound like activities that he shouldn't have any problems continuing. As far as working, it depends on what his job entails and how he responds to his treatment. You do have to make allowances for some of the side effects, but once you know how you respond you can work around most of them. When I travel I know that I need to allow time to take rest breaks. Maybe sleep in for a morning and not get going until the afternoon. Or, not try to see everything I want to see in one day.
Would you husband's company cover consultation with a myeloma specialist in Italy. Dr. Palumbo, a well known myeloma specialist and researcher, is in Italy. I know that there are others who work with him, but I don't know who they are and I don't know what city he is in.
Don't despair. Give your husband's treatment some time to work and then see how things are.
LisaE -
I was in Dubrovnik a year ago May. I loved the city and the area and would love to go back there again. Be prepared to do stairs, stairs, stairs since the city is built into the side of a mountain that goes into the Adriatic. It reminded me a lot of California the way the mountains drop into the sea.Take a couple of boat excursions to the islands in the area. They are beautiful. If I get to go to Croatia again, I want to explore more of the country. Have a wonderful trip.
Nancy in Phila
I worked for 5 more years after my diagnosis with myeloma. The only times that I took off for medical leave were for a fractured arm from the myeloma, my stem cell transplant and for knee replacement surgery. I retired when I reached full retirement age here in the US. It was sooner than I had planned to retire because I was having enough difficulty with fatigue and cognitive tasks that it seemed like a good time. I was a full time physical therapist.
The only times that I restricted my activities were following the above medical issues. Once I recovered from each of them I resumed my travels and other activities. The things that you and your husband enjoy doing sound like activities that he shouldn't have any problems continuing. As far as working, it depends on what his job entails and how he responds to his treatment. You do have to make allowances for some of the side effects, but once you know how you respond you can work around most of them. When I travel I know that I need to allow time to take rest breaks. Maybe sleep in for a morning and not get going until the afternoon. Or, not try to see everything I want to see in one day.
Would you husband's company cover consultation with a myeloma specialist in Italy. Dr. Palumbo, a well known myeloma specialist and researcher, is in Italy. I know that there are others who work with him, but I don't know who they are and I don't know what city he is in.
Don't despair. Give your husband's treatment some time to work and then see how things are.
LisaE -
I was in Dubrovnik a year ago May. I loved the city and the area and would love to go back there again. Be prepared to do stairs, stairs, stairs since the city is built into the side of a mountain that goes into the Adriatic. It reminded me a lot of California the way the mountains drop into the sea.Take a couple of boat excursions to the islands in the area. They are beautiful. If I get to go to Croatia again, I want to explore more of the country. Have a wonderful trip.
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
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