Hi Kirsten,
I'm sorry to hear about your new normal. I appreciate your post as my father was recently diagnosed with multiple myeloma in July 2013. Since then he has spent 3 months in the hospital (complications from treatments) and is in constant pain. It looks like the myeloma has spread to soft tissue. Would you mind to tell me how your mother is? I can't find much info re extramedullary myeloma online.
Thanks
Forums
Re: Mom just diagnosed with extramedullary myeloma
Thank you also for your reply. It is very difficult for anyone to find information about extramedullary myeloma. Even on this wonderful site.
As I think I said earlier, we know for sure that my mom's liver, spleen, and lymph nodes are involved. There seem to be slight kidney issues as well. On the VERY positive side ... my mom just finished cycle 4 of Kyprolis/Dex. She is on a Revlimid break for awhile. Her numbers are looking great! The paraprotein marker last month was .7! That hasn't been that low since her initial response if .9 to Velcade as her induction therapy.
There might be a dose reduction/scheduling change for infusions coming though. She is having more side effects and so dosing might be a little much. We were terrified a few months ago when the multiple myeloma came roaring back, but since a few minor problems at the start, we are very grateful that this seems to be working! Every day she is with us and feels more like herself is truly a gift. We hope Kyprolis will continue to keep this nasty disease at bay.
I am sorry you are going through this too. Knowing all we can gives us some power and a measure of control.
As I think I said earlier, we know for sure that my mom's liver, spleen, and lymph nodes are involved. There seem to be slight kidney issues as well. On the VERY positive side ... my mom just finished cycle 4 of Kyprolis/Dex. She is on a Revlimid break for awhile. Her numbers are looking great! The paraprotein marker last month was .7! That hasn't been that low since her initial response if .9 to Velcade as her induction therapy.
There might be a dose reduction/scheduling change for infusions coming though. She is having more side effects and so dosing might be a little much. We were terrified a few months ago when the multiple myeloma came roaring back, but since a few minor problems at the start, we are very grateful that this seems to be working! Every day she is with us and feels more like herself is truly a gift. We hope Kyprolis will continue to keep this nasty disease at bay.
I am sorry you are going through this too. Knowing all we can gives us some power and a measure of control.
Re: Mom just diagnosed with extramedullary myeloma
Thanks for the recent postings about extramedullary myeloma, Kirsten and Smelly.
Just to be make sure everyone is aware of it, you can find all the Beacon's news and opinion articles related to extramedullary disease at the relevant topic (tag) page:
https://myelomabeacon.org/tag/extramedullary-disease/
There were also three presentations specifically about extramedullary disease at the recent American Society of Hematology meeting, which you can find listed at this link.
As you'll see in these articles and abstracts, extramedullary disease is generally a sign of an aggressive form of myeloma. It should not be taken lightly.
Best of luck to both of you and your families.
Just to be make sure everyone is aware of it, you can find all the Beacon's news and opinion articles related to extramedullary disease at the relevant topic (tag) page:
https://myelomabeacon.org/tag/extramedullary-disease/
There were also three presentations specifically about extramedullary disease at the recent American Society of Hematology meeting, which you can find listed at this link.
As you'll see in these articles and abstracts, extramedullary disease is generally a sign of an aggressive form of myeloma. It should not be taken lightly.
Best of luck to both of you and your families.
Re: Mom just diagnosed with extramedullary myeloma
Thank you Myeloma Staff. I have read and re-read all of the little information there is on extramedullary multiple myeloma, as I am sure Smelly has. Unfortunately there is very little, and what is available says generally the same thing.
Because our loved ones having been diagnosed in the small percentile of patients with this type of myeloma, we look to educators for help and advice. It is sometimes difficult to know where we stand when, like myself, I go to ALL appointments and infusions with my mom. She can only take so much in terms of what is happening to her and what this disease will do next. The anxiety level for her is incredibly high. Therefore it is difficult, with her there, to ask some of the tougher questions.
This is why we post on Myeloma Beacon. Not to be edited, and certainly not because we take this lightly. These are our cherished loved ones and we are advocates for them.
Because our loved ones having been diagnosed in the small percentile of patients with this type of myeloma, we look to educators for help and advice. It is sometimes difficult to know where we stand when, like myself, I go to ALL appointments and infusions with my mom. She can only take so much in terms of what is happening to her and what this disease will do next. The anxiety level for her is incredibly high. Therefore it is difficult, with her there, to ask some of the tougher questions.
This is why we post on Myeloma Beacon. Not to be edited, and certainly not because we take this lightly. These are our cherished loved ones and we are advocates for them.
Re: Mom just diagnosed with extramedullary myeloma
Hi!
I was diagnosed during my first relapse with 2 centers, including one extramedullary. It was supraclavicular right shoulder.
Went away with Velcade and dex + radiotherapy, though Velcade is better with bone lesions and boney nature of disease.
Try to find out if your multiple myeloma is more boney, and where it is located (if radio is possible - if well done its the best therapy), and maybe the extramedullary might be terminated by normal therapies.
But definitely watch the mutation and progression.
Chose well your doctor and the strategy.
Thinking about you. Good luck!
V
I was diagnosed during my first relapse with 2 centers, including one extramedullary. It was supraclavicular right shoulder.
Went away with Velcade and dex + radiotherapy, though Velcade is better with bone lesions and boney nature of disease.
Try to find out if your multiple myeloma is more boney, and where it is located (if radio is possible - if well done its the best therapy), and maybe the extramedullary might be terminated by normal therapies.
But definitely watch the mutation and progression.
Chose well your doctor and the strategy.
Thinking about you. Good luck!
V
-
Vivien de Gunzburg
Re: Mom just diagnosed with extramedullary myeloma
Good morning all. We found out yesterday afternoon that after a few weeks of increasing mid-back pain that has radiated toward the left front of the chest, CT scan to rule our pneumonia and blood clot that my mom looks like she is relapsing with serum paraprotein jumping from .7 for the last two months to 3.7 at the start of cycle 5 this month using Kyrprolis and Dex. She has been on a Rev break for the past two months due to increased neuropathy and severe diarrhea. We were going to be scheduled for a biopsy of the pleura to look at more pronounced nodules and thickening of the pleural lining, but her doc does not want to put her through that now and wants to do a PET scan instead.
It looks like she will be going back on Rev; as this combination of 3 has given the best response so far. My big concern is the shortening of response time. She relapsed the first time at just right at 6 months. This time the relapse if at the end of cycle 4.
To reiterate; her myeloma is extramedullary and has been since diagnosis a year ago. The biggest concentration has been in soft tissue including the lymph nodes, liver and spleen. The nodules and slight pleural effusion are about the same as the original contrast CT a year ago except the above mentioned thickening and more pronounced nodules.
Very concerned about what we will do now. I am confident that the 3 drugs will get the myeloma to calm back down, but if we are going by averages, then her response time until relapse is getting shorter and shorter. An this time she was also doing regular cycles of Kyprolis/Dex and was not on any break.
It looks like she will be going back on Rev; as this combination of 3 has given the best response so far. My big concern is the shortening of response time. She relapsed the first time at just right at 6 months. This time the relapse if at the end of cycle 4.
To reiterate; her myeloma is extramedullary and has been since diagnosis a year ago. The biggest concentration has been in soft tissue including the lymph nodes, liver and spleen. The nodules and slight pleural effusion are about the same as the original contrast CT a year ago except the above mentioned thickening and more pronounced nodules.
Very concerned about what we will do now. I am confident that the 3 drugs will get the myeloma to calm back down, but if we are going by averages, then her response time until relapse is getting shorter and shorter. An this time she was also doing regular cycles of Kyprolis/Dex and was not on any break.
Re: Mom just diagnosed with extramedullary myeloma
I am wondering if anyone has used the EPOCH regimen in dealing with the extramedullary part of their disease? My mom is hospitalized tonight to begin this tomorrow. She will be in for 4-5 days on continuous drip. Quite scary right now. She is so frail.
Re: Mom just diagnosed with extramedullary myeloma
Best of luck to your mother, Kirsten. We hope she responds well to the new treatment.
For those who have not heard about the EPOCH regimen, it's a five-drug combination regimen consisting of etoposide, prednisone, vincristine (Oncovin), cyclophosphamide (Cytoxan), and doxorubicin (hydroxydaunorubicin, Adriamycin).
For those who have not heard about the EPOCH regimen, it's a five-drug combination regimen consisting of etoposide, prednisone, vincristine (Oncovin), cyclophosphamide (Cytoxan), and doxorubicin (hydroxydaunorubicin, Adriamycin).
Re: Mom just diagnosed with extramedullary myeloma
Thank you Beacon Staff. A whole new treatment direction begins.
Re: Mom just diagnosed with extramedullary myeloma
Well not such good news this week. We are left with two options at this point. 1: EPOCH in abbreviated form (no vincristine, lower dose cytoxin) with Kyprolis added in and hope for maybe 6 months of what could be a "distressed quality of life" or...2: Let nature take its course and have maybe 2-3 months. So hard knowing the right course. My mom is not done fighting and we think she will try again the EPOCH. Anyone with advice? I am still looking for the magic pill.
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