Hello.
My dad has stage 3 multiple myeloma. His kidneys are at 5%, calcium in his blood over 15, anemic, hurts all over, doctor said it was at 75% of his marrow infected. My dad is really weak and cannot walk much.
Our doctors said untreatable and uncureable. No chemo or rad.
My father keeps asking how long does he have. It's the hardest thing I have gone through. I am a stage 4 male breast cancer fighter with 2 recurrences in 4 years, but still here and fighting hard. But this has taken the wind out of my sails.
I would like to hear if anyone has any ideas about my father's case.
Thanks so much,
Bryan Jackson
Forums
Re: Doctors say father's myeloma is untreatable
Hello Bryan,
I am very sorry to hear about your father. Was he just diagnosed with myeloma? I'm guessing he was if his doctors told you what stage the disease is at. Staging is done mainly at diagnosis.
If your father was just diagnosed, then there is a good chance he will respond to initial treatment. Your father's doctors are probably pessimistic about his chances given that his kidneys have sustained a lot of damage from the disease. They also may be discouraged by the fact that your father's bone marrow plasma cell percentage is as high as it is is.
However, I don't understand why they do not at least try and see if he will respond quickly enough to initial treatment. Yes, his kidneys have been damaged, but kidney function can recover a bit, sometimes even a lot, with treatment. Also, while his bone marrow plasma cell percentage is high, there have been others here in the forum with higher numbers at diagnosis, and they've responded well to treatment.
I'm not a doctor, but I would think that your father could probably be treated initially with dexamethasone, which might stabilize the disease a bit, and then Velcade, which is a myeloma treatment often used in patients with kidney problems.
If your father responds to that treatment and his kidney function begins to improve, his doctors might also consider adding another treatment, either cyclophosphamide (Cytoxan) or Revlimid. But the Velcade and dexamethasone combination could do quite a bit for your father by itself.
Please ask your father's doctors if they have considered at least trying to treat his disease with something like I've just outlined. Perhaps they have, and it just hasn't responded.
Finally, a very important question: What sort of doctors are responsible for making treatment decisions for your father? Are they general cancer doctors at a local hospital? Or are they specialists at a major cancer center?
If they are just general cancer doctors, and particularly if they are unwilling to treat your father at all, I would recommend seeking a second opinion at a major cancer center with myeloma specialists.
If you let us know where you are, we can make some recommendations for centers you might want to consider. You also can refer to the myeloma treatment center list here at the Beacon,
https://myelomabeacon.org/resources/treatment-centers/
The list is for the U.S. so, if you are somewhere outside the U.S., let us know where, and we will see if we can come up with some suggestions.
Even if your father's doctors are willing to try treating your father for a while, I would still still recommend that you get the ball rolling to seek a second opinion from a myeloma specialist at a cancer center. Myeloma is not a common cancer, and treating patients like your father requires a lot of experience -- experience that most general oncologists won't have.
Good luck, and please update us when you get a chance with information about how your father is doing and any additional questions you may have.
I am very sorry to hear about your father. Was he just diagnosed with myeloma? I'm guessing he was if his doctors told you what stage the disease is at. Staging is done mainly at diagnosis.
If your father was just diagnosed, then there is a good chance he will respond to initial treatment. Your father's doctors are probably pessimistic about his chances given that his kidneys have sustained a lot of damage from the disease. They also may be discouraged by the fact that your father's bone marrow plasma cell percentage is as high as it is is.
However, I don't understand why they do not at least try and see if he will respond quickly enough to initial treatment. Yes, his kidneys have been damaged, but kidney function can recover a bit, sometimes even a lot, with treatment. Also, while his bone marrow plasma cell percentage is high, there have been others here in the forum with higher numbers at diagnosis, and they've responded well to treatment.
I'm not a doctor, but I would think that your father could probably be treated initially with dexamethasone, which might stabilize the disease a bit, and then Velcade, which is a myeloma treatment often used in patients with kidney problems.
If your father responds to that treatment and his kidney function begins to improve, his doctors might also consider adding another treatment, either cyclophosphamide (Cytoxan) or Revlimid. But the Velcade and dexamethasone combination could do quite a bit for your father by itself.
Please ask your father's doctors if they have considered at least trying to treat his disease with something like I've just outlined. Perhaps they have, and it just hasn't responded.
Finally, a very important question: What sort of doctors are responsible for making treatment decisions for your father? Are they general cancer doctors at a local hospital? Or are they specialists at a major cancer center?
If they are just general cancer doctors, and particularly if they are unwilling to treat your father at all, I would recommend seeking a second opinion at a major cancer center with myeloma specialists.
If you let us know where you are, we can make some recommendations for centers you might want to consider. You also can refer to the myeloma treatment center list here at the Beacon,
https://myelomabeacon.org/resources/treatment-centers/
The list is for the U.S. so, if you are somewhere outside the U.S., let us know where, and we will see if we can come up with some suggestions.
Even if your father's doctors are willing to try treating your father for a while, I would still still recommend that you get the ball rolling to seek a second opinion from a myeloma specialist at a cancer center. Myeloma is not a common cancer, and treating patients like your father requires a lot of experience -- experience that most general oncologists won't have.
Good luck, and please update us when you get a chance with information about how your father is doing and any additional questions you may have.
Re: Doctors say father's myeloma is untreatable
Cheryl summed up my exact thoughts. Seek out a top multiple myeloma specialist. We're happy to help with recommendations on where to find these individuals.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Doctors say father's myeloma is untreatable
I was told also that he is missing main pairs of the chromosomes and that is making the cancer untreatable, and the fact my father seen what it did to me.
He is to be 79 on the 28 of this month and told the doctor that he wants to be comfortable for the remainder of his life. I want to fight -- it's the way I am -- and told my dad this, but he wants to go home. He is VERY close to God.
It's so hard for me to accept this decision, but it's not mine to make.
I am in Groves, Texas. Took dad to the Cancer Center of Southeast Texas. 1 of the places that has saved my life from metastatic male breast cancer for 4 years, and still kicking cancers, but ... my doctors are from M.D. Anderson in Houston Texas, which is one of the 3 in Texas off the list you provided.
I want to thank you for the responses and still looking for help if there is any hope.
Bryan
He is to be 79 on the 28 of this month and told the doctor that he wants to be comfortable for the remainder of his life. I want to fight -- it's the way I am -- and told my dad this, but he wants to go home. He is VERY close to God.
It's so hard for me to accept this decision, but it's not mine to make.
I am in Groves, Texas. Took dad to the Cancer Center of Southeast Texas. 1 of the places that has saved my life from metastatic male breast cancer for 4 years, and still kicking cancers, but ... my doctors are from M.D. Anderson in Houston Texas, which is one of the 3 in Texas off the list you provided.
I want to thank you for the responses and still looking for help if there is any hope.
Bryan
Re: Doctors say father's myeloma is untreatable
Bigbredbear,
First, I won't try to address the issue of what your Dad wishes to do at this point. In the end, that's his decision .... as you clearly point out.
However, many of us on this forum have "missing chromosomes" (deletions). It's the nature of the disease. Depending on the specific deletions that are in place, it can make it a bit more hard to treat the disease, but it by no means makes the disease "untreatable". But note that I'm not sure of all the factors that the doctors were considering when they made this statement.
In any case, I personally think it would be worth a 90 minute drive to visit the MD Anderson center in Houston (which has a top-notch multiple myeloma department), if only to get a second opinion.
First, I won't try to address the issue of what your Dad wishes to do at this point. In the end, that's his decision .... as you clearly point out.
However, many of us on this forum have "missing chromosomes" (deletions). It's the nature of the disease. Depending on the specific deletions that are in place, it can make it a bit more hard to treat the disease, but it by no means makes the disease "untreatable". But note that I'm not sure of all the factors that the doctors were considering when they made this statement.
In any case, I personally think it would be worth a 90 minute drive to visit the MD Anderson center in Houston (which has a top-notch multiple myeloma department), if only to get a second opinion.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Doctors say father's myeloma is untreatable
I'm sorry that your family is finding themselves in this situation. Its very difficult to come to grips with a diagnosis like this.
As the others have said, I would consider a second opinion, if your father is agreeable. The one thing your dad may not be understanding is that much of the treatment is not like the traditional chemo of years before.
With that said, working in long term care, I often see families having a harder time letting go than the patient themselves. You may be at the point where you have to look realistically at what the future could have in store for your father if he pursues treatment. If the choice to do treatment means just an endless round of doctor appointments and infusions that just keep him going, then it's time to look at quality of life.
At times we have patients who are just one blood transfusion from death. That's not so bad if they have quality of life in between, and those transfusions have a lasting effect. The time to consider hospice comes when the time between those transfusions becomes shorter and shorter.
So, those are the things you have to look at through your fathers eyes. In seeking a second opinion, it may be important to remember that you may find a doctor willing to do treatment, and you may talk your father into doing it. Then you just have to make sure in the end that it is worth putting him through it.
Wishing you all the best!
As the others have said, I would consider a second opinion, if your father is agreeable. The one thing your dad may not be understanding is that much of the treatment is not like the traditional chemo of years before.
With that said, working in long term care, I often see families having a harder time letting go than the patient themselves. You may be at the point where you have to look realistically at what the future could have in store for your father if he pursues treatment. If the choice to do treatment means just an endless round of doctor appointments and infusions that just keep him going, then it's time to look at quality of life.
At times we have patients who are just one blood transfusion from death. That's not so bad if they have quality of life in between, and those transfusions have a lasting effect. The time to consider hospice comes when the time between those transfusions becomes shorter and shorter.
So, those are the things you have to look at through your fathers eyes. In seeking a second opinion, it may be important to remember that you may find a doctor willing to do treatment, and you may talk your father into doing it. Then you just have to make sure in the end that it is worth putting him through it.
Wishing you all the best!
Re: Doctors say father's myeloma is untreatable
Hi Bryan, I think that the previous posters have all given excellent advice, and I would just like to add that even in 'palliative' care, the patient can be made to feel more comfortable. If he 'hurts all over', he may get some benefit from bisphosphonate (bone building) treatments (Aredia or Zometa), and I would think that he could at least try an 'induction' chemotherapy with a chemotherapy drug specific to treating myeloma, such as Velcade, Revlimid, or some combination of that.
I wouldn't give up on treatments until consulting with a haematological oncologist with a lot of experience in treating myeloma patients .
I wouldn't give up on treatments until consulting with a haematological oncologist with a lot of experience in treating myeloma patients .
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Doctors say father's myeloma is untreatable
My 2 cents. Some of the treatments available today have very little side effects for some of us.
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stann
Re: Doctors say father's myeloma is untreatable
We have now seen another oncologist, but the outcome is the same. The second oncologist has battled multiple myeloma many times, but he also said there is no hope for the reasons stated below.
My father's age 79, kidneys are shut down, blood calcium 15+, and the chromosomes 9 (CEP9) and 15 (CEP15) exhibited monosomy 13 (98%), trisomy 11 (98%) and IGH rearrangement (99%) in cells examined.
FISH analysis to detect a possible translocation of 4;14, 11;14 or 14;16 was preformed; the results were postive for non-typical 11;14 in 99% of cells. Red blood cells down to 18%, 82% bone marrow infected.
And my father does not wish to suffer anymore and wishes for a peaceful death.
What are you suppose to do? I want to fight. I am a stage 4 male breast cancer fighter with 3 reoccurances in 4 years and I am still kicking after 52 chemo treatments and 95 rounds of Rads. Mets to the bones and liver and diaphragm. I know all about fighting for your life more so then most.
I am still at a loss for words.
Thanks, Bryan
My father's age 79, kidneys are shut down, blood calcium 15+, and the chromosomes 9 (CEP9) and 15 (CEP15) exhibited monosomy 13 (98%), trisomy 11 (98%) and IGH rearrangement (99%) in cells examined.
FISH analysis to detect a possible translocation of 4;14, 11;14 or 14;16 was preformed; the results were postive for non-typical 11;14 in 99% of cells. Red blood cells down to 18%, 82% bone marrow infected.
And my father does not wish to suffer anymore and wishes for a peaceful death.
What are you suppose to do? I want to fight. I am a stage 4 male breast cancer fighter with 3 reoccurances in 4 years and I am still kicking after 52 chemo treatments and 95 rounds of Rads. Mets to the bones and liver and diaphragm. I know all about fighting for your life more so then most.
I am still at a loss for words.
Thanks, Bryan
Re: Doctors say father's myeloma is untreatable
Sorry you and your dad are going through this.
Not to make light of the situation, but I'd love to live until I was 79. I'd take 69. Hoping for 59 is more realistic for me.
Good luck to you guys.
Not to make light of the situation, but I'd love to live until I was 79. I'd take 69. Hoping for 59 is more realistic for me.
Good luck to you guys.
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stann
14 posts
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