He is 35. It has to come from him.
I'd think it best to ignore it and hope he comes to his senses on his own. Is that possible?
I'll bet after a few months he'll come around. But, in the meantime, don't be somebody that he wants to avoid.
Just my 2 cents.
Forums
Re: Young son has multiple myeloma, is refusing treatment
Dealing with a diagnosis of a cancer that most people have never heard of is devastating and extremely hard to accept. I would encourage you to go to a local support group and learn all you can about multiple myeloma. Having information at hand will make it easier to approach your son and suggest treatment.
Most important, make yourself his friend and best supporter. I was not able to move forward emotionally until I accepted the diagnosis. He is going thru a process and needs all the support and help he can get. God bless you both.
Most important, make yourself his friend and best supporter. I was not able to move forward emotionally until I accepted the diagnosis. He is going thru a process and needs all the support and help he can get. God bless you both.
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Dano - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan 2014
- Age at diagnosis: 65
Re: Young son has multiple myeloma, is refusing treatment
I sympathize with you and your son. Our daughter was diagnosed with multiple myeloma at the age of 32 in 2012. We had never heard of the disease and because she was young, myeloma was not suspected. So she was in Stage 3 by diagnosis.
She responded well to Velcade and had a stem cell transplant in August of 2012. It was 10 months of hard work, but she is in complete remission now.
The longer you wait to get treatment the more damage the myeloma can do. I think if our daughter had gotten diagnosed properly 6 months earlier she would not have some of the bone issues she does.
It is extremely difficult to be the parent of an adult diagnosed with an incurable disease. They are not the child you took care of and you cannot make them have treatment you think they should. There are not as many young people dealing with this disease, but this is a good place to find some of them. It would be good for your son to talk with them.
Our daughter's life is different now. She is single and I don't see marriage or children in her future. Life not turning out how you thought it would is part of the grieving process. But life still goes on and most of the time it is not that bad.
She responded well to Velcade and had a stem cell transplant in August of 2012. It was 10 months of hard work, but she is in complete remission now.
The longer you wait to get treatment the more damage the myeloma can do. I think if our daughter had gotten diagnosed properly 6 months earlier she would not have some of the bone issues she does.
It is extremely difficult to be the parent of an adult diagnosed with an incurable disease. They are not the child you took care of and you cannot make them have treatment you think they should. There are not as many young people dealing with this disease, but this is a good place to find some of them. It would be good for your son to talk with them.
Our daughter's life is different now. She is single and I don't see marriage or children in her future. Life not turning out how you thought it would is part of the grieving process. But life still goes on and most of the time it is not that bad.
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Terrij
Re: Young son has multiple myeloma, is refusing treatment
I am so sorry about your son. I know that his diagnosis is devastating for you, but please remember that it is much much worse for him.
Like many of the people who posted responses to your post, and many others who read the postings but didn't add anything, I had to learn to live with the fact that I had cancer. I was 52 when I was diagnosed, my only daughter was graduating from college, and the next phase of my life suddenly was going to be very different from what I had thought it would be.
After a few days of hospitalization to deal with hypercalcemia that caused me to miss my daughter's graduation, she and I got angry and for us, anger was not denial but determination that we were going to beat myeloma. Nearly a year later, with induction treatment and a stem cell transplant, I had gone from Stage 3 to complete remission. It's back now, but I'm once again determined to whip it right back into remission.
If he's ready to hear it, it can help your son to read the responses to your post.
Like many of the other posters, I learned to make changes in my life, but I was able to keep on working and maintain most of my activities. This has included travel to hike in national parks, time at the beach, and gardening, my big love. I just don't have the same energy for it that I used to, so I've learned to adjust my expectations of what I can accomplish.
I don't have magic words for you to tell your son. But I will tell you what not to do; these are things my mother did, and it has irreparably damaged our relationship:
1. This is about your son, not you. Don't tell everyone "oh poor me, my son has cancer." As irrational as he is behaving right now, it is his right as an adult to stick his head in the sand and wish that the myeloma goes away.
2. Do not tell your son about the latest myeloma treatment you learned from your friends. Unless they are currently in treatment for myeloma, they don't know what the current treatments are -- and they are very different than they were 10 years ago. My parents live in a retirement community, and I forbade them from telling me well-intentioned but out of date information. I have learned useful information from one of their friends who is currently in treatment, however.
3. Do not ask him why he isn't curled up in bed depressed. At least for me, that was a non-starter that wasn't going to treat the myeloma.
4. Do hold your arms open to hug him, if he needs it. Give him a safe place to grieve.
5. If he does decide to get treatment, ask him about it and really listen. I have explained my treatment protocol to my mother multiple times, both during the original treatment and this time around. It is beyond annoying.
6. More important, ask him if there is anything you can do to help him. If he says, no, don't take it personally. Just knowing that you are there for him is enough on most days.
7. If you have your own health issues, don't offer to be a bone marrow donor. You mean well, but he shouldn't need to explain to you that your history of cancer or other issues rules you out.
Like many of the people who posted responses to your post, and many others who read the postings but didn't add anything, I had to learn to live with the fact that I had cancer. I was 52 when I was diagnosed, my only daughter was graduating from college, and the next phase of my life suddenly was going to be very different from what I had thought it would be.
After a few days of hospitalization to deal with hypercalcemia that caused me to miss my daughter's graduation, she and I got angry and for us, anger was not denial but determination that we were going to beat myeloma. Nearly a year later, with induction treatment and a stem cell transplant, I had gone from Stage 3 to complete remission. It's back now, but I'm once again determined to whip it right back into remission.
If he's ready to hear it, it can help your son to read the responses to your post.
Like many of the other posters, I learned to make changes in my life, but I was able to keep on working and maintain most of my activities. This has included travel to hike in national parks, time at the beach, and gardening, my big love. I just don't have the same energy for it that I used to, so I've learned to adjust my expectations of what I can accomplish.
I don't have magic words for you to tell your son. But I will tell you what not to do; these are things my mother did, and it has irreparably damaged our relationship:
1. This is about your son, not you. Don't tell everyone "oh poor me, my son has cancer." As irrational as he is behaving right now, it is his right as an adult to stick his head in the sand and wish that the myeloma goes away.
2. Do not tell your son about the latest myeloma treatment you learned from your friends. Unless they are currently in treatment for myeloma, they don't know what the current treatments are -- and they are very different than they were 10 years ago. My parents live in a retirement community, and I forbade them from telling me well-intentioned but out of date information. I have learned useful information from one of their friends who is currently in treatment, however.
3. Do not ask him why he isn't curled up in bed depressed. At least for me, that was a non-starter that wasn't going to treat the myeloma.
4. Do hold your arms open to hug him, if he needs it. Give him a safe place to grieve.
5. If he does decide to get treatment, ask him about it and really listen. I have explained my treatment protocol to my mother multiple times, both during the original treatment and this time around. It is beyond annoying.
6. More important, ask him if there is anything you can do to help him. If he says, no, don't take it personally. Just knowing that you are there for him is enough on most days.
7. If you have your own health issues, don't offer to be a bone marrow donor. You mean well, but he shouldn't need to explain to you that your history of cancer or other issues rules you out.
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darnold - Name: Dana Arnold
- Who do you know with myeloma?: self
- When were you/they diagnosed?: May 2009
- Age at diagnosis: 52
Re: Young son has multiple myeloma, is refusing treatment
Hi mehutch,
Posting on the Myeloma Beacon - What a wonderful way of preparing yourself for helping your son when he eventually wants your help. Understanding this disease is one way you can help - you don't need to inform him about the disease; he will find out.
I know it must be very difficult for you, but there is obviously a reason he doesn't want to have treatment. That is his decision and it is something he will have to deal with. If I was 35 (I was 43) & googled a disease that I had never heard of, I wonder what would come up in the search. It could be quite depressing. There is a lot of outdated information on the web.
I know that it is not much comfort, but there are a lot of people who post on the Beacon that were diagnosed at a more advanced stage of the disease and they have achieved remission.
All the best,
Libby
Posting on the Myeloma Beacon - What a wonderful way of preparing yourself for helping your son when he eventually wants your help. Understanding this disease is one way you can help - you don't need to inform him about the disease; he will find out.
I know it must be very difficult for you, but there is obviously a reason he doesn't want to have treatment. That is his decision and it is something he will have to deal with. If I was 35 (I was 43) & googled a disease that I had never heard of, I wonder what would come up in the search. It could be quite depressing. There is a lot of outdated information on the web.
I know that it is not much comfort, but there are a lot of people who post on the Beacon that were diagnosed at a more advanced stage of the disease and they have achieved remission.
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: Young son has multiple myeloma, is refusing treatment
Hi mehutch,
This is a really tough situation. I guess the main thing I want to say is that a diagnosis of multiple myeloma is difficult to hear and process, but it is not a death sentence. You've heard from many other replies here; I just want to add my voice to theirs. And the current chemo treatments allow most of us to have decent quality of life. Things are not nearly as bad as an initial search of the web would lead one to believe. Hopefully your son will come to understand that and seek treatment.
darnold makes some really good points in the do's and don't list. But I need to quibble with one thing from darnold's reply. darnold said that the multiple myeloma diagnosis is much more devastating for your son than it is for you. I'm not sure about that. As a parent, there's nothing I can imagine that would be worse than something terrible happening to either of my children (now 25 and 22 years old). I'm really glad that it is me with multiple myeloma rather than one of them.
Good luck, mehutch!
This is a really tough situation. I guess the main thing I want to say is that a diagnosis of multiple myeloma is difficult to hear and process, but it is not a death sentence. You've heard from many other replies here; I just want to add my voice to theirs. And the current chemo treatments allow most of us to have decent quality of life. Things are not nearly as bad as an initial search of the web would lead one to believe. Hopefully your son will come to understand that and seek treatment.
darnold makes some really good points in the do's and don't list. But I need to quibble with one thing from darnold's reply. darnold said that the multiple myeloma diagnosis is much more devastating for your son than it is for you. I'm not sure about that. As a parent, there's nothing I can imagine that would be worse than something terrible happening to either of my children (now 25 and 22 years old). I'm really glad that it is me with multiple myeloma rather than one of them.
Good luck, mehutch!
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
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