Hello everyone,
My mom, who's 72, was diagnosed with high-risk multiple myeloma in December 2015. She's been on two courses of therapy so far: a clinical trial that included Velcade, melphalan and cortisone (which stopped working after just a couple of months) and then a course with Revlimid and cortisone that lasted until mid-July. We're waiting for her to get on a new regimen, hopefully with immunotherapy and Pomalyst. My mom has deletion 17p and translocation 4:14, so her myeloma is aggressive.
She's been in relatively good health. When she was diagnosed, she had low hematocrit but that went up with the therapy. But this week she had a bacterial infection, which went away with antibiotics, and now has problems with hypercalcemia, which made her so groggy it was like she was drugged. She's in the hospital now getting treatment for the hypercalcemia and also getting a blood transfusion for low hematocrit and to monitor her blood-sugar levels. She has stabilized but I'm very worried about her.
We live in Athens, Greece, though we are American citizens (I'm a reporter with a US outlet in Athens). We have a good physician, a myeloma specialist, but because of the overwhelmed Greek health care system, we also have an overwhelmed physician.
I'm wondering what experiences you all may have had with hypercalcemia and with failing to respond to drug regimens.
Any advice would be welcome. I'm feeling quite lost and confused and am trying to consider where else I can take my mom for treatment. I'm hoping there are more options for her.
Yours,
Joanna Kakissis
Forums
Re: Hypercalcemia - what can be done about it?
Welcome to the forum.
Is your mom on a bone-building drug such as Aredia (pamidronate) or Zometa (zoledronic acid)? They are used to control hypercalcemia.
Is your mom on a bone-building drug such as Aredia (pamidronate) or Zometa (zoledronic acid)? They are used to control hypercalcemia.
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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: Hypercalcemia - what can be done about it?
She may need to first get the excess calcium flushed out of her blood. This was done for my husband before starting treatment. He was on IV drip for a whole weekend. The calcium in his blood was a critical 14.
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Anonymous
Re: Hypercalcemia - what can be done about it?
Hi Joanna,
I don't have any experience with hypercalcemia, but I wanted to make a couple of comments nevertheless.
First, I'm sorry to hear about your mom having multiple myeloma, and her recent issues. You've come to a good place for information.
Second, it's good that she is being treated by a myeloma specialist. As you may have read in other posts here, that's one of the very most important things since myeloma is such a complex disease.
Third, I've heard many of your reports on NPR over the past several years and have found them quite informative. My son is a radio reporter too, so I have a lot of respect for journalists working with that medium.
Best wishes to your mom and to you. Please keep us posted on how things go for your mom.
Mike
I don't have any experience with hypercalcemia, but I wanted to make a couple of comments nevertheless.
First, I'm sorry to hear about your mom having multiple myeloma, and her recent issues. You've come to a good place for information.
Second, it's good that she is being treated by a myeloma specialist. As you may have read in other posts here, that's one of the very most important things since myeloma is such a complex disease.
Third, I've heard many of your reports on NPR over the past several years and have found them quite informative. My son is a radio reporter too, so I have a lot of respect for journalists working with that medium.
Best wishes to your mom and to you. Please keep us posted on how things go for your mom.
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
Re: Hypercalcemia - what can be done about it?
Hi Joanna,
Sorry you are in need of this site, but welcome.
My husband is 51 and just completed his autologous stem cell transplant (ASCT) (in June) for myeloma diagnosed at the same time as your mother. He too has the 4:14 translocation but not the 17p deletion, but as many say on this site, everyone's myeloma is unique.
In general, you will hear that 4:14 is responsive to proteasome inhibitors and should be treated with triplet therapy if possible.
I'm not sure we could have managed this all ex-US and we have access to the Canadian health care system as my husband is from Quebec and a U.S. citizen (binational).
There are hoops to jump through in any healthcare system but we know this one.
Our doctor elected to bypass Velcade for Kyprolis as he felt that it was a better med for us (more active, lower neuropathy rate, and with the potential to boost dosage based on results from a trial started at the University of Chicago). The high-dose Kyprolis does have some risks for congestive heart failure and respiratory issues, but my husband's heart and lungs are fine. I believe Kyprolis is now approved in the EU.
We were on Kyprolis, Revlimid, and dexamethasone (KRD).
We couldn't have gotten Kyprolis as induction for new onset myeloma in most of the world. We could not have gotten Kyprolis with Revlimid as induction in Canada or (I believe) the EU, unless it was in a trial. In the U.S., your mother would have access to drugs - free from trials - that are more restricted in Europe, but it would uproot her life in a way that you'll need to evaluate. It might also be expensive depending on her Medicare eligibility and Medigap coverage. (My husband's insurance costs us ~$16,000 / year plus a $4500 deductible.)
These geographical issues may matter in cases, particularly resistant cases, such as your mom. You might want to get a video conference second opinion with a U.S. myeloma specialist to see if the approach here would be different.
I don't know where your U.S. home would be, but this site has a directory of multiple myeloma treatment centers. We love our providers at University of California - San Francsico (UCSF).
As for the hypercalcemia ... It usually responds to diuresis (IV hydration with Lasix [furosemide] if needed). She should be off meds that might aggravate it, such as hydrochlorothiazide (HCTZ) or chlorthalidone. Or lithium. She should be on a bisphosphonate.
Wishing you both well.
rick
Sorry you are in need of this site, but welcome.
My husband is 51 and just completed his autologous stem cell transplant (ASCT) (in June) for myeloma diagnosed at the same time as your mother. He too has the 4:14 translocation but not the 17p deletion, but as many say on this site, everyone's myeloma is unique.
In general, you will hear that 4:14 is responsive to proteasome inhibitors and should be treated with triplet therapy if possible.
I'm not sure we could have managed this all ex-US and we have access to the Canadian health care system as my husband is from Quebec and a U.S. citizen (binational).
There are hoops to jump through in any healthcare system but we know this one.
Our doctor elected to bypass Velcade for Kyprolis as he felt that it was a better med for us (more active, lower neuropathy rate, and with the potential to boost dosage based on results from a trial started at the University of Chicago). The high-dose Kyprolis does have some risks for congestive heart failure and respiratory issues, but my husband's heart and lungs are fine. I believe Kyprolis is now approved in the EU.
We were on Kyprolis, Revlimid, and dexamethasone (KRD).
We couldn't have gotten Kyprolis as induction for new onset myeloma in most of the world. We could not have gotten Kyprolis with Revlimid as induction in Canada or (I believe) the EU, unless it was in a trial. In the U.S., your mother would have access to drugs - free from trials - that are more restricted in Europe, but it would uproot her life in a way that you'll need to evaluate. It might also be expensive depending on her Medicare eligibility and Medigap coverage. (My husband's insurance costs us ~$16,000 / year plus a $4500 deductible.)
These geographical issues may matter in cases, particularly resistant cases, such as your mom. You might want to get a video conference second opinion with a U.S. myeloma specialist to see if the approach here would be different.
I don't know where your U.S. home would be, but this site has a directory of multiple myeloma treatment centers. We love our providers at University of California - San Francsico (UCSF).
As for the hypercalcemia ... It usually responds to diuresis (IV hydration with Lasix [furosemide] if needed). She should be off meds that might aggravate it, such as hydrochlorothiazide (HCTZ) or chlorthalidone. Or lithium. She should be on a bisphosphonate.
Wishing you both well.
rick
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rick - Name: rick
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: nov 2015
- Age at diagnosis: 50
Re: Hypercalcemia - what can be done about it?
Thanks to everyone for your help and replies. I really appreciate it. (And thanks to Mike B. for the kind words about my work. Very sweet of you.)
My mom's hypercalcemia is better now, but her blood-sugar levels are high due to cortisone and diuretic for water retention. Her creatinine levels are also high, though her kidneys are doing well so far. She's still in hospital until the doctors get all her levels to a normal rate.
Her doctor has started her on Pomalyst, dex and cortisone as a treatment. He's trying to get her in a clinical trial for Empliciti (elotuzumab). I hope it works. He was caught off guard when the Revlimid stopped working, though a U.S. myeloma specialist I consulted with said that Revlimid should be used together with Velcade in high-risk patients for a better, longer lasting result. (She was on Revlimid alone.)
Because my mom is 72, she's not eligible for a stem cell transplant, so we have to go with other therapies. I am checking out options in the US and Germany as well.
I've been so down these past few days because she seemed to be doing so well, despite the difficulty in treating her. This hypercalcemia came out so quickly. She was fine on Saturday and totally out of it on Sunday. So scary.
My mom's hypercalcemia is better now, but her blood-sugar levels are high due to cortisone and diuretic for water retention. Her creatinine levels are also high, though her kidneys are doing well so far. She's still in hospital until the doctors get all her levels to a normal rate.
Her doctor has started her on Pomalyst, dex and cortisone as a treatment. He's trying to get her in a clinical trial for Empliciti (elotuzumab). I hope it works. He was caught off guard when the Revlimid stopped working, though a U.S. myeloma specialist I consulted with said that Revlimid should be used together with Velcade in high-risk patients for a better, longer lasting result. (She was on Revlimid alone.)
Because my mom is 72, she's not eligible for a stem cell transplant, so we have to go with other therapies. I am checking out options in the US and Germany as well.
I've been so down these past few days because she seemed to be doing so well, despite the difficulty in treating her. This hypercalcemia came out so quickly. She was fine on Saturday and totally out of it on Sunday. So scary.
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joannakakissis - Name: Joanna Kakissis
- Who do you know with myeloma?: mom
- Age at diagnosis: 72
Re: Hypercalcemia - what can be done about it?
Thanks for the update about your mom, Joanna. I'm glad the hypercalcemia is better. I would expect that reducing the blood sugar level is doable in a fairly short time.
Good luck with getting her into the clinical trial you mentioned. That does sound like a good idea.
One thing - not to second guess your mom's doctor or anything like that, but I'm a little surprised to see that she is on dex and cortisone together. Both are corticosteroids, so it seems to me like they would both be doing similar functions. Normally dex is the preferred corticosteroid to pair with other anti-myeloma agents because it seems to have a synergistic effect with many of them, as well as direct anti-myeloma action itself.
Dealing with myeloma, as you know, can sure be a rough roller coaster ride. I hope the situation continues to improve for your mom. Please keep us posted.
Mike
Good luck with getting her into the clinical trial you mentioned. That does sound like a good idea.
One thing - not to second guess your mom's doctor or anything like that, but I'm a little surprised to see that she is on dex and cortisone together. Both are corticosteroids, so it seems to me like they would both be doing similar functions. Normally dex is the preferred corticosteroid to pair with other anti-myeloma agents because it seems to have a synergistic effect with many of them, as well as direct anti-myeloma action itself.
Dealing with myeloma, as you know, can sure be a rough roller coaster ride. I hope the situation continues to improve for your mom. Please keep us posted.
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
Re: Hypercalcemia - what can be done about it?
Mike:
From what I understand, she will be using dex in the new treatment. I'm getting a bit confused translating everything from Greek to English and back again. I'm sure she's not on two corticosteroid treatments at the same time. When she was on Revlimid, she was taking cortisone that was not dex.
She's out of the hospital now, but because she's high-risk, with terrible cytogenetics, her doctor says that he only expects treatments to work 3-4 months at a time, on average.
Yes, it's a rough roller coaster. My poor mom. She's exhausted. I was so hoping that we could keep this disease under control.
From what I understand, she will be using dex in the new treatment. I'm getting a bit confused translating everything from Greek to English and back again. I'm sure she's not on two corticosteroid treatments at the same time. When she was on Revlimid, she was taking cortisone that was not dex.
She's out of the hospital now, but because she's high-risk, with terrible cytogenetics, her doctor says that he only expects treatments to work 3-4 months at a time, on average.
Yes, it's a rough roller coaster. My poor mom. She's exhausted. I was so hoping that we could keep this disease under control.
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joannakakissis - Name: Joanna Kakissis
- Who do you know with myeloma?: mom
- Age at diagnosis: 72
Re: Hypercalcemia - what can be done about it?
Hi again Joanna.
Happy to hear your mom is out of the hospital and you are looking for the next treatment. Sorry that medication response to date has not been more robust and that your mom is tired and weakened.
i just want to say that there are still a lot of medications and trials.
I'm too new as a caregiver to discuss resistant cases or recurrence.
My husband, diagnosed at the same time as your mother and also 4:14, had his follow up post stem cell transplant bone marrow biopsy today, and is sleeping it off while I type. I know your mom's age precluded that, but I really hope that your doctors try triplet (3 drug) therapy and consider higher dose Kyprolis or Darzalex or Empliciti if her body permits, in addition to the Pomalyst / dex. Kyprolis and Darzalex appear to be the most potent anti-myeloma drugs we currently have.
Often people describe myeloma as a marathon, but I'm not sure that analogy works for the young or those with high risk cytogenetics. The marathoners often choose to save drugs for later and try to live with the disease - often quite successfully, I might add (we have a friend who has been on treatment for 14+ years in Chicago). But high risk cytogenetics or youth may warrant hitting this disease hard – or at least that was our choice. Treatment becomes a series of mid-distance races, hopefully with pauses and some time to relax.
Too early to say if our choice was a wise one unfortunately.
Again, hoping your mom responds to whatever is next.
rick
Happy to hear your mom is out of the hospital and you are looking for the next treatment. Sorry that medication response to date has not been more robust and that your mom is tired and weakened.
i just want to say that there are still a lot of medications and trials.
I'm too new as a caregiver to discuss resistant cases or recurrence.
My husband, diagnosed at the same time as your mother and also 4:14, had his follow up post stem cell transplant bone marrow biopsy today, and is sleeping it off while I type. I know your mom's age precluded that, but I really hope that your doctors try triplet (3 drug) therapy and consider higher dose Kyprolis or Darzalex or Empliciti if her body permits, in addition to the Pomalyst / dex. Kyprolis and Darzalex appear to be the most potent anti-myeloma drugs we currently have.
Often people describe myeloma as a marathon, but I'm not sure that analogy works for the young or those with high risk cytogenetics. The marathoners often choose to save drugs for later and try to live with the disease - often quite successfully, I might add (we have a friend who has been on treatment for 14+ years in Chicago). But high risk cytogenetics or youth may warrant hitting this disease hard – or at least that was our choice. Treatment becomes a series of mid-distance races, hopefully with pauses and some time to relax.
Too early to say if our choice was a wise one unfortunately.
Again, hoping your mom responds to whatever is next.
rick
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rick - Name: rick
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: nov 2015
- Age at diagnosis: 50
Re: Hypercalcemia - what can be done about it?
Thank you so much, Rick. I don't think she can tolerate a stem cell transplant, but I hope the available drugs can keep her alive as long as possible.
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joannakakissis - Name: Joanna Kakissis
- Who do you know with myeloma?: mom
- Age at diagnosis: 72
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