My Dad was diagnosed with Multiple Myeloma in Jan. 2007 and at that time they didn't know if he would respond to treatment or not. At diagnosis we were told he had 2900mg of Myeloma protein in his body (how they figured this I don't know). He was unable to walk and was confined to a wheelchair and had extreme pain. He was placed on Revlimid and responded well going into a stable, partial remission with his protein being barely detectable for 2 and half years. He also regained his mobility and only used a cane when he walked. Jan. 2010 he began getting really sick again and was taken off of the Revlimid due to low blood counts. He had to be placed in the hospital in March 2010 and went into end stage renal failure and his bone marrow biopsy showed 70% myeloma cells. The doctors told me to let him die and not even try anymore treatment even though there were others that could be attempted because they expected him to die. After being moved out of ICU, where he spent two weeks, the oncologist decided to respect my Dad's wishes to continue treatment and gave him a dose of Velcade, which resulted in my dad developing pneumonia and becoming septic because he had strep throat, which they didn't check first even though he had symptoms. Now my Dad is home and is having to do dialysis 3 times a week. The oncologist keeps telling him that they are going to continue treatment, but when I spoke with them they told me that they thought he is too frail and won't be doing treatment. They also told me not to tell my Dad that they didn't know if he would ever be strong enough for the treatment.
So the long introduction that I gave was so I could pose the following question. I made an appointment for my Dad to see a multiple myeloma specialist at MD Anderson Lymphoma and Myeloma Center. Am I going to far in doing this? Should we just go with what my Dad's current oncologist says? It seems that everyone thinks I should just let him die, but that seems so cruel to me since he wants to do treatment if possible. I know that my Dad won't live forever, but having already lost my mom and only brother I feel that I should fight to keep him as long as he is willing to fight. Am I being completely unreasonable and naive?
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lhuffman528 - Name: Lindsey
- Who do you know with myeloma?: My dad
- When were you/they diagnosed?: Jan. 2007
- Age at diagnosis: 55
Re: Aggressive Myeloma
Hello Lindsey,
I am very sorry to hear about the problems your father has been having. I think it is great, though, that you are taking such a strong interest in his care.
I think most people here on the forum will agree that the person who should make the final decision about your father's treatment is your father. Even more importantly, he should make the decision based on all the relevant information. People shouldn't be keeping information from him.
Now, I'm saying all this assuming that your father still is able to think straight. Nothing you wrote, though, suggests that your father can't still make good decisions about his future.
So discuss the options with your father, and find out what HE wants to do. Letting him make the decision doesn't mean you can't tell him how you feel. But, if you were in your father's shoes, wouldn't you want to have all the information that's relevant, and wouldn't you want to be the person who decides what treatment you're going to get?
Good luck, Lindsey. I will be thinking about you and your father and hoping that all goes well.
Ricardo
I am very sorry to hear about the problems your father has been having. I think it is great, though, that you are taking such a strong interest in his care.
I think most people here on the forum will agree that the person who should make the final decision about your father's treatment is your father. Even more importantly, he should make the decision based on all the relevant information. People shouldn't be keeping information from him.
Now, I'm saying all this assuming that your father still is able to think straight. Nothing you wrote, though, suggests that your father can't still make good decisions about his future.
So discuss the options with your father, and find out what HE wants to do. Letting him make the decision doesn't mean you can't tell him how you feel. But, if you were in your father's shoes, wouldn't you want to have all the information that's relevant, and wouldn't you want to be the person who decides what treatment you're going to get?
Good luck, Lindsey. I will be thinking about you and your father and hoping that all goes well.
Ricardo
Re: Aggressive Myeloma
Yes my Dad is still able to think straight and says that he wants to continue treatment. At this point, I'm afraid that trying won't do any good. I'm afraid that I will take him down to MD Anderson and the multiple myeloma specialist will tell my dad exactly what the current oncologist has said. I just don't think my Dad is willing to accept the reality of this disease and that he is dying.
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lhuffman528 - Name: Lindsey
- Who do you know with myeloma?: My dad
- When were you/they diagnosed?: Jan. 2007
- Age at diagnosis: 55
Re: Aggressive Myeloma
Dear Lindsey,
Especially because your Dad wants to continue treatment, I think you should keep the appointment with the multiple myeloma specialist. It's very possible he'll know something the local oncologist does not.
The very best of luck to you and your Dad.
Especially because your Dad wants to continue treatment, I think you should keep the appointment with the multiple myeloma specialist. It's very possible he'll know something the local oncologist does not.
The very best of luck to you and your Dad.
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Linda
Re: Aggressive Myeloma
I understand your fears and concerns, Lindsey.
But Linda is right. It is entirely possible that the folks at MD Anderson will know of treatment options your local oncologist is not aware of.
More importantly, think about how you will feel if you don't go to MD Anderson, and your father passes away sooner rather than later. How will you feel knowing that there might have been a chance to help your father live longer, and you didn't pursue it because you were afraid of the possibility -- just the possibility -- of bad news.
Good luck, Lindsey! We are all pulling for you and your father!
But Linda is right. It is entirely possible that the folks at MD Anderson will know of treatment options your local oncologist is not aware of.
More importantly, think about how you will feel if you don't go to MD Anderson, and your father passes away sooner rather than later. How will you feel knowing that there might have been a chance to help your father live longer, and you didn't pursue it because you were afraid of the possibility -- just the possibility -- of bad news.
Good luck, Lindsey! We are all pulling for you and your father!
Re: Aggressive Myeloma
Thanks guys...it helps just to be able to air out my thoughts and get some feedback. We will be keeping the appointment with MD Anderson.
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lhuffman528 - Name: Lindsey
- Who do you know with myeloma?: My dad
- When were you/they diagnosed?: Jan. 2007
- Age at diagnosis: 55
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