Good morning.
My 50-year-old dad has Stage 3a myeloma and was diagnosed in April of 2014. He had an autologous stem cell transplant in October of 2015, which they said was successful. He's been taking a Velcade shot in the stomach at every doctor appointment, but they want him to start on Revlimid because the Velcade is starting to not work.
So my first question is, why, if the stem cell transplant was successful, is his treatment already starting to not work? Is the cancer coming back already?
My second question is, why would his calcium levels be high the past two doctors visits? His doctor is pretty worried about it and is referring him to an endocrinologist. Could anyone tell me why he needs an endocrinologist?
I appreciate any help because I'm so lost right now and confused and worried. I read that the survival rate for his stage is only 29 months and he's already had it for almost 24 months (maybe longer because he had horrible rib and back pain for months before he was diagnosed). Thanks for any replies, I really appreciate it!
Forums
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concerneddaughter - Name: Amber
- Who do you know with myeloma?: My daddy
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 48
Re: Treatment not working, elevated calcium levels
Hi Concerned Daughter,
Just remember that statistics are just estimates, and no one should match themselves directly to a statistic!
Are you seeing a myeloma specialist? it sounds as if your father does have complications that need expert help. An endocrinologist could help with the excess calcium, which is probably being caused by the breakdown of bones. Excess calcium in the blood is dangerous and could cause other health problems too.
I think that the term 'successful' for a stem cell transplant could be taken in two ways. One is that the patient got through it successfully, and the other is that it helped to decrease the myeloma tumour burden. Often a patient is almost in remission before the transplant, and so the results may seem ambiguous. That is just my two cents though!
Good luck to you both!
Just remember that statistics are just estimates, and no one should match themselves directly to a statistic!
Are you seeing a myeloma specialist? it sounds as if your father does have complications that need expert help. An endocrinologist could help with the excess calcium, which is probably being caused by the breakdown of bones. Excess calcium in the blood is dangerous and could cause other health problems too.
I think that the term 'successful' for a stem cell transplant could be taken in two ways. One is that the patient got through it successfully, and the other is that it helped to decrease the myeloma tumour burden. Often a patient is almost in remission before the transplant, and so the results may seem ambiguous. That is just my two cents though!
Good luck to you both!
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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: Treatment not working, elevated calcium levels
In addition to the question Nancy S asked about your father seeing a myeloma specialist (not just a regular haematologist), is your father taking Aredia or Zometa for the bone issues which can accompany myeloma?
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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: Treatment not working, elevated calcium levels
Nancy, thank you for the reply. I don't think he's seeing a specialist, just a doctor. I know I shouldn't believe statistics because that can cause unnecessary worry, but I am only 21 and scared to lose my dad. I want him to be around to watch his grandchildren grow up (I'm currently pregnant with my second daughter).
As far as the high calcium, his doctor didn't understand why it was so high because his myeloma levels were good? I guess we won't know until he goes to the endocrinologist.
Good luck to you too and I'm so sorry you have to go through this horrible disease.
Little Monkey, I'm sorry to see your father is dealing with this horrible disease as well. He is not taking either of those that I know of. It doesn't make sense to me that his doctor doesn't have him on anything that would prevent his calcium from skyrocketing. Thanks for the reply!
As far as the high calcium, his doctor didn't understand why it was so high because his myeloma levels were good? I guess we won't know until he goes to the endocrinologist.
Good luck to you too and I'm so sorry you have to go through this horrible disease.
Little Monkey, I'm sorry to see your father is dealing with this horrible disease as well. He is not taking either of those that I know of. It doesn't make sense to me that his doctor doesn't have him on anything that would prevent his calcium from skyrocketing. Thanks for the reply!
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concerneddaughter - Name: Amber
- Who do you know with myeloma?: My daddy
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 48
Re: Treatment not working, elevated calcium levels
I think the stats you are reading are out of date anyways!
There are so many aspects to this disease, that seeing a myeloma specialist could give you the best possible treatments. If you share where you are geographically, folks on the Forum might have suggestions as to where a good treatment centre is too. Even if you get a 'second opinion', that might be helpful too.
Aspects to myeloma treatments can include genetic testing, access to clinical trials, deciding which drugs to give out of a wide variety, and much more! I think that is why myeloma treatments are getting better, but also more complicated, all of the time.
There are so many aspects to this disease, that seeing a myeloma specialist could give you the best possible treatments. If you share where you are geographically, folks on the Forum might have suggestions as to where a good treatment centre is too. Even if you get a 'second opinion', that might be helpful too.
Aspects to myeloma treatments can include genetic testing, access to clinical trials, deciding which drugs to give out of a wide variety, and much more! I think that is why myeloma treatments are getting better, but also more complicated, all of the time.
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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: Treatment not working, elevated calcium levels
I echo what others say about the importance of having a specialist on your team, but assuming that all of his other numbers are okay, the fact that your doctor wants him to see an endocrinologist could actually be a good thing! It means he doesn't think that the multiple myeloma is causing the high calcium levels. A tumor on the parathyroid gland could also be the cause of the high calcium levels.
Lyn
(who doesn't have multiple myeloma, but who has a bad bad thyroid and troubles with high blood calcium)
P.S. - If so, my understanding is that most of these tumors are not cancerous.
Lyn
(who doesn't have multiple myeloma, but who has a bad bad thyroid and troubles with high blood calcium)
P.S. - If so, my understanding is that most of these tumors are not cancerous.
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: Treatment not working, elevated calcium levels
Thanks for the replies, yall. I will tell him about seeking out a specialist, I just don't know if his insurance would cover it and he's broke enough as it is.
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concerneddaughter - Name: Amber
- Who do you know with myeloma?: My daddy
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 48
Re: Treatment not working, elevated calcium levels
What kind of doctor is managing his care now?
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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: Treatment not working, elevated calcium levels
Hematologist, I believe.
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concerneddaughter - Name: Amber
- Who do you know with myeloma?: My daddy
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 48
Re: Treatment not working, elevated calcium levels
Hi concerneddaughter,
Welcome to the forum. I can definitely understand your concern for your dad. I'm on the other side of the coin from you - I'm the dad, with a daughter just a few years older than you who is concerned about me.
You've gotten excellent advice from the folks who replied ahead of me, but I just have a thought or two to add.
Has your father recently had a PET scan or skeletal survey (X-rays of all long bones in his body) or full-body MRI? Those are the tests that an oncologist would order to determine whether the increase in calcium is due to the myeloma. Positive results (which actually are negative / bad for the patient - easy to get confused on that) from any of those tests would indicate that the myeloma is causing lytic lesions in your father's bones and leeching out calcium from the bones, which is going into his bloodstream. I expect that your father had tests like these earlier in his treatment, but now that the calcium level in his blood is increasing, I would think that at least one of these tests should be done again and compared to the previous results.
Second, many insurance plans cover large teaching hospitals where myeloma specialists tend to work, and many of these hospitals have special plans for patients who need financial help. So don't give up on getting a myeloma specialist involved, even if it's only as a second opinion who coordinates with your dad's other doctor. You can find a list of myeloma treatment facilities here.
Best wishes to your father and to you.
Mike
Welcome to the forum. I can definitely understand your concern for your dad. I'm on the other side of the coin from you - I'm the dad, with a daughter just a few years older than you who is concerned about me.
You've gotten excellent advice from the folks who replied ahead of me, but I just have a thought or two to add.
Has your father recently had a PET scan or skeletal survey (X-rays of all long bones in his body) or full-body MRI? Those are the tests that an oncologist would order to determine whether the increase in calcium is due to the myeloma. Positive results (which actually are negative / bad for the patient - easy to get confused on that) from any of those tests would indicate that the myeloma is causing lytic lesions in your father's bones and leeching out calcium from the bones, which is going into his bloodstream. I expect that your father had tests like these earlier in his treatment, but now that the calcium level in his blood is increasing, I would think that at least one of these tests should be done again and compared to the previous results.
Second, many insurance plans cover large teaching hospitals where myeloma specialists tend to work, and many of these hospitals have special plans for patients who need financial help. So don't give up on getting a myeloma specialist involved, even if it's only as a second opinion who coordinates with your dad's other doctor. You can find a list of myeloma treatment facilities here.
Best wishes to your father and to you.
Mike
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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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