I have a 35 year old son who has been diagnosed with stage 2 multiple myeloma in March. The problem my husband and I are dealing with is the fact that our son refuses treatment.
Does anyone have any suggestions? We are all so frustrated with his decision. We only want the best for our son.
Any suggestions would be greatly appreciated.
Forums
Re: Young son has multiple myeloma, is refusing treatment
We are sorry to hear of your situation, mehutch. We're sure you will get helpful advice from the members of the Beacon community.
Just so everyone knows, mehutch's posting originally was made in this forum thread:
"Considering only supportive treatment"
However, we felt that it would be better as a discussion thread of its own given the particular circumstances of the situation.
Just so everyone knows, mehutch's posting originally was made in this forum thread:
"Considering only supportive treatment"
However, we felt that it would be better as a discussion thread of its own given the particular circumstances of the situation.
Re: Young son has multiple myeloma, is refusing treatment
Hi I just finished finished my first stem cell transplant. I would imagine it is difficult for a young 35-year-old to first admit that they have a disease that can be so dangerous. The sooner the treatment the sooner they can arrest any damaging or debilitating effects from this disease.
But you know that. Maybe you can get his agreement that at the he needs to get educated as to the disease and the treatment options. During that time he will have the ability to assess his own position and become more familiar with the outcomes with treatment and without.
God bless you All I hope this helps
But you know that. Maybe you can get his agreement that at the he needs to get educated as to the disease and the treatment options. During that time he will have the ability to assess his own position and become more familiar with the outcomes with treatment and without.
God bless you All I hope this helps
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Rickcrocetti
Re: Young son has multiple myeloma, is refusing treatment
Without knowing the specific reasons for not wanting treatment, it might be difficult to offer any cogent advice, but at the core of it, I think the following is important. You need to reiterate for him that there is a reason to live, and the only way to live, and live well, is by getting treatment. Without treatment, or unsophisticated treatment, things do not bode well. You can just go back 10-15 years ago, and illustrate for him what the 3 year overall survival for multiple myeloma patients was. It was horrendous.
Contemporary medicine has done miracles for multiple myeloma patients and not taking advantage of those miracles is a disservice to oneself, and of course, to one's own peril. It may be helpful for him to also talk to other young patients. There are a few here. I was diagnosed at 37, stage III. This was 3 years ago. I practically live a second life since I was close to being dead at time of diagnosis (hemoglobin under 7 and various fractures).
Mark and a few others who regularly post here are in the same, or similar, boat. You can message me privately here in the forum and I can provide contact information for your son to reach me.
Good luck to you and your son.
Contemporary medicine has done miracles for multiple myeloma patients and not taking advantage of those miracles is a disservice to oneself, and of course, to one's own peril. It may be helpful for him to also talk to other young patients. There are a few here. I was diagnosed at 37, stage III. This was 3 years ago. I practically live a second life since I was close to being dead at time of diagnosis (hemoglobin under 7 and various fractures).
Mark and a few others who regularly post here are in the same, or similar, boat. You can message me privately here in the forum and I can provide contact information for your son to reach me.
Good luck to you and your son.
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ivanm - Name: Ivan Mitev
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August, 2011
- Age at diagnosis: 37
Re: Young son has multiple myeloma, is refusing treatment
I was diagnosed in the fall of 2009. I have had 2 stem cell transplants and have been in remission since June 2010! It was a challenging time, but in reflection, nothing else was a consideration. I was able to get leave from work, used the Family Medical Leave Act, and when I first disclosed my diagnosis, my co-workers all jumped in with help.
It is never easy to not be in control, but, with a full team of health care at UAMS in Little Rock, AR, I was able to manage my emotional, physical and psychological needs. UAMS is home to the Myeloma Institute for Research and Therapy. I was cared for with compassionate professionals.
I feel great, go back to AR twice a year, am doing yoga, strength training and cardio. I am back teaching. (I missed only 1/2 of a semester teaching.)
Get an evaluation at a top myeloma clinic where that is their entire focus. Many centers say they follow the AR protocol, but it is not the same! This disease is manageable and you can return to normal after the treatment.
Consider the stress of your diagnosis on your friends and family who feel helpless. I never got sick during the entire treatment process, yes, I did not always feel great,but you are stronger than you think. Do not be controlled by fear. Let your caregivers manage fear for you.
It is never easy to not be in control, but, with a full team of health care at UAMS in Little Rock, AR, I was able to manage my emotional, physical and psychological needs. UAMS is home to the Myeloma Institute for Research and Therapy. I was cared for with compassionate professionals.
I feel great, go back to AR twice a year, am doing yoga, strength training and cardio. I am back teaching. (I missed only 1/2 of a semester teaching.)
Get an evaluation at a top myeloma clinic where that is their entire focus. Many centers say they follow the AR protocol, but it is not the same! This disease is manageable and you can return to normal after the treatment.
Consider the stress of your diagnosis on your friends and family who feel helpless. I never got sick during the entire treatment process, yes, I did not always feel great,but you are stronger than you think. Do not be controlled by fear. Let your caregivers manage fear for you.
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Sdillin
Re: Young son has multiple myeloma, is refusing treatment
I know that you are in a very sticky situation since you love your son and would like to force the issue of starting treatment. But, as an adult he calls the shots for himself.
The best advice right now would be to encourage him to learn about the disease and the treatment options. If he wasn't diagnosed by a myeloma specialist, you could encourage him to see one for a second opinion. The myeloma specialists that I know spend quite a bit of time with their new patients explaining the disease, the particular person's individual disease, treatment options and likely outcomes.
You might also encourage him to go to a support group in your area to meet other people who are living with this disease. I know when I first became symptomatic that that was one of the most important things that I did for myself. Meeting people who were healthy and had been living with this disease for 20+ years was mind blowing.
The other thing to learn is that the treatment for myeloma is nothing like what everyone knows about cancer treatment. The drugs that we take, for the most part, are very different from the drugs used for solid tumors. They don't indiscriminately destroy any fast growing cell in the body which leads to all of the nausea, hair loss, weight loss, etc. The ones we take are targeted for specific biochemical processes in the body and are very well tolerated with minimal side effects that are more annoying than anything else. Most of us have been able to continue working throughout treatment unless we had multiple fractures from bone lesions that led to our diagnosis.
I was much older than your son when I was diagnosed, 60, but I had a full time job that was fairly physical. I worked all through my treatment except for 3 months when I had a broken arm and for 3 months when I had my stem cell transplant. Depending on the type of work that your son does, he might not miss any work at any time except if he does a transplant.
There is a man who posted a couple of years ago who was diagnosed with MGUS in his 30's. He put his life on hold because he was sure that he would progress to active myeloma in a short period of time. He stopped working, didn't go out on dates to maybe marry, pretty much stopped living. At the time he posted he had been living this non-life for several years and was angry with himself for being so stupid. It always struck me that he had missed out on what could have been a wonderful life.
I hope that your son won't find himself in the same place in the future. A diagnosis of multiple myeloma very rarely is a death sentence within a short period of time. We usually have many good years ahead of us and look forward to living every minute of those years as fully as we can.
I send you and your husband the best in encouraging your son to get beyond the diagnosis and look to living.
Nancy in Phila
The best advice right now would be to encourage him to learn about the disease and the treatment options. If he wasn't diagnosed by a myeloma specialist, you could encourage him to see one for a second opinion. The myeloma specialists that I know spend quite a bit of time with their new patients explaining the disease, the particular person's individual disease, treatment options and likely outcomes.
You might also encourage him to go to a support group in your area to meet other people who are living with this disease. I know when I first became symptomatic that that was one of the most important things that I did for myself. Meeting people who were healthy and had been living with this disease for 20+ years was mind blowing.
The other thing to learn is that the treatment for myeloma is nothing like what everyone knows about cancer treatment. The drugs that we take, for the most part, are very different from the drugs used for solid tumors. They don't indiscriminately destroy any fast growing cell in the body which leads to all of the nausea, hair loss, weight loss, etc. The ones we take are targeted for specific biochemical processes in the body and are very well tolerated with minimal side effects that are more annoying than anything else. Most of us have been able to continue working throughout treatment unless we had multiple fractures from bone lesions that led to our diagnosis.
I was much older than your son when I was diagnosed, 60, but I had a full time job that was fairly physical. I worked all through my treatment except for 3 months when I had a broken arm and for 3 months when I had my stem cell transplant. Depending on the type of work that your son does, he might not miss any work at any time except if he does a transplant.
There is a man who posted a couple of years ago who was diagnosed with MGUS in his 30's. He put his life on hold because he was sure that he would progress to active myeloma in a short period of time. He stopped working, didn't go out on dates to maybe marry, pretty much stopped living. At the time he posted he had been living this non-life for several years and was angry with himself for being so stupid. It always struck me that he had missed out on what could have been a wonderful life.
I hope that your son won't find himself in the same place in the future. A diagnosis of multiple myeloma very rarely is a death sentence within a short period of time. We usually have many good years ahead of us and look forward to living every minute of those years as fully as we can.
I send you and your husband the best in encouraging your son to get beyond the diagnosis and look to living.
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
Re: Young son has multiple myeloma, is refusing treatment
I'm hesitant to post a reply because I have difficulty relating to your son's frame of mind concerning his condition.
To me, once I was diagnosed, my only thought was, "ok, what do I have to do to kick this thing in the ass?" I have too much life yet to live to not want to do whatever I can to prolong it. I have to walk my daughter down the aisle when she finally finds the man that she wants to spend the rest of her life with. I have to hold my first grandchild, whenever that event happens to one of my two children. I have some sights to see with my beautiful wife after she retires in a year or two, not to mention myself finally retiring in about 7 years (yes, I plan to make it to retirement and beyond.).
To me, my choice of receiving treatment was obvious. I have no choice. I do so, or I miss out on all of the good and wonderful things that my future holds.
What good and wonderful things will your son miss out on by refusing treatment? Perhaps that is the question that he needs to ask himself.
To me, once I was diagnosed, my only thought was, "ok, what do I have to do to kick this thing in the ass?" I have too much life yet to live to not want to do whatever I can to prolong it. I have to walk my daughter down the aisle when she finally finds the man that she wants to spend the rest of her life with. I have to hold my first grandchild, whenever that event happens to one of my two children. I have some sights to see with my beautiful wife after she retires in a year or two, not to mention myself finally retiring in about 7 years (yes, I plan to make it to retirement and beyond.).
To me, my choice of receiving treatment was obvious. I have no choice. I do so, or I miss out on all of the good and wonderful things that my future holds.
What good and wonderful things will your son miss out on by refusing treatment? Perhaps that is the question that he needs to ask himself.
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Blackbird - Name: Rick Crow
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Feb, 2013
- Age at diagnosis: 53
Re: Young son has multiple myeloma, is refusing treatment
Like the others It is hard for me to comment without speculation. If his aversion is to "chemo", multiple myeloma isn't treated that way. My own treatment with Velcade put me in remission reasonably fast and consisted of 3 trips to the infusion center a week, a couple of sticks with a needle and a 1/2 hour of time. And it is easier and faster today. Had I not had kidney problems that I believe were over treated, it would have been a breeze.
He will not lose his hair, nausea isn't a common side affect, nor is weakness. Most go on with their lives with a minimum of interruption. I know this paints a pretty mild picture, but the disease is relentless, incurable, and eventually fatal. There is no reason to give into it when life can still be somewhat normal during the interim.
He will not lose his hair, nausea isn't a common side affect, nor is weakness. Most go on with their lives with a minimum of interruption. I know this paints a pretty mild picture, but the disease is relentless, incurable, and eventually fatal. There is no reason to give into it when life can still be somewhat normal during the interim.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: Young son has multiple myeloma, is refusing treatment
Hello Mehutch,
The diagnosis of multiple myeloma is devastating. The initial reaction is disbelief, perhaps even denial. This can't be happening. WHY did this happen? HOW did this happen? I can't deal with this. I don't want to deal with this. You feel alone and in a state of complete dispair.
I think it would be safe to say your son is angry right now. That anger is going to be expressed in many different ways. Refusing treatment is most likely one of them. He isn't ready to face this yet. As his parents who love him and want what is best for him, you wish you could just make these decisions for him. You know you can't and it's very frustrating for all concerned.
I think Nancy gave you some very useful advice by suggesting your son consider joining a support group. Speaking with others that are in the same situation he is finding himself in right now will help him to realize he is not alone. It will also benefit him greatly to see he can continue to be productive and live his life.
Your son needs to come to the realization he has something he needs to deal with. He has to decide he wants to confront it. Trying to force him will only add to his confusion & frustration (as well as your own ). He has a lot to absorb and process. Patience is key ... but ... it's easier said than done..
As his parents, listen to him, love him, be there for him, and support him. Even if he doesn't make the decisions you would like him to make, respect his choices. Above all, pray for him.
God bless you,
Kim
The diagnosis of multiple myeloma is devastating. The initial reaction is disbelief, perhaps even denial. This can't be happening. WHY did this happen? HOW did this happen? I can't deal with this. I don't want to deal with this. You feel alone and in a state of complete dispair.
I think it would be safe to say your son is angry right now. That anger is going to be expressed in many different ways. Refusing treatment is most likely one of them. He isn't ready to face this yet. As his parents who love him and want what is best for him, you wish you could just make these decisions for him. You know you can't and it's very frustrating for all concerned.
I think Nancy gave you some very useful advice by suggesting your son consider joining a support group. Speaking with others that are in the same situation he is finding himself in right now will help him to realize he is not alone. It will also benefit him greatly to see he can continue to be productive and live his life.
Your son needs to come to the realization he has something he needs to deal with. He has to decide he wants to confront it. Trying to force him will only add to his confusion & frustration (as well as your own ). He has a lot to absorb and process. Patience is key ... but ... it's easier said than done..
As his parents, listen to him, love him, be there for him, and support him. Even if he doesn't make the decisions you would like him to make, respect his choices. Above all, pray for him.
God bless you,
Kim
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Jerseygyrl - Name: Kim
- Who do you know with myeloma?: My Loved One
- When were you/they diagnosed?: February 2014
- Age at diagnosis: 58
Re: Young son has multiple myeloma, is refusing treatment
So sorry to hear about your son's diagnosis. I agree with jerseygyrl. Your son must be angry and perhaps in denial, a natural and normal response for anybody who gets diagnosed with myeloma.
I don't know that I have any suggestions, but I can really relate to what you are going through -- and I just wanted to share my experience with you so that you know you aren't alone.
My husband was diagnosed with myeloma at age 47 in the fall of 2012. For a year and half he refused treatment even though he had debilitating compression fractures and protein counts in his urine that were astronomical ("the highest we've seen in 30 years" according to our myeloma specialist).
What compounded it even further is that my husband is a hypochondriac and refused to do any reading or speak with others about myeloma. So the idea of a support group for him was out. I tried to get him to see a psychologist but he refused. (I believe this should be one of the first things suggested by medical doctors upon diagnosis!)
During that year and a half, I yelled, cried, begged and practically had a nervous breakdown pleading with him to get treated. In near kidney failure, he finally began treatment last month. His numbers are already turning around and, although we have a lot to address (severe bone disease), he is responding well.
To my surprise, my husband shared with me recently that, in looking back, he didn't have the emotional maturity at the time to accept the diagnosis (who would?). What I have learned is that people process things so differently depending on their core nature and they also process things according to their own time clock.
I don't know that I have any suggestions, but I can really relate to what you are going through -- and I just wanted to share my experience with you so that you know you aren't alone.
My husband was diagnosed with myeloma at age 47 in the fall of 2012. For a year and half he refused treatment even though he had debilitating compression fractures and protein counts in his urine that were astronomical ("the highest we've seen in 30 years" according to our myeloma specialist).
What compounded it even further is that my husband is a hypochondriac and refused to do any reading or speak with others about myeloma. So the idea of a support group for him was out. I tried to get him to see a psychologist but he refused. (I believe this should be one of the first things suggested by medical doctors upon diagnosis!)
During that year and a half, I yelled, cried, begged and practically had a nervous breakdown pleading with him to get treated. In near kidney failure, he finally began treatment last month. His numbers are already turning around and, although we have a lot to address (severe bone disease), he is responding well.
To my surprise, my husband shared with me recently that, in looking back, he didn't have the emotional maturity at the time to accept the diagnosis (who would?). What I have learned is that people process things so differently depending on their core nature and they also process things according to their own time clock.
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Jean Ruth Howard - Name: Jeannie
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: November 2012
- Age at diagnosis: 47
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