Hello, I'm new here ... and to the terminology/process of multiple myeloma. Please excuse my lack of knowledge as we are still learning and trying to wrap our heads around all the issues/treatments/options.
My mom, 62, was diagnosed a year ago with multiple myeloma saying it was aggressive and showing 'knicks' in the bone. After the nephrologist found elevated protein in her urine, he sent her to the oncologist and he started her on what they called a 'chemo pill'? This was a shot that she received once a week.
After almost a year of this they tested and said it was showing 35% improvement? She then started getting really sick - low blood pressure, consistent diarrhea, blood transfusions (colonoscopy shows leaking veins), fluid overload then after fluid pills has to receive fluid (viscious cycle).
They decided to start her on a two day a week intravenous treatment - fluid, steriods, chemo, fluid. They did this on a Tuesday and Wednesday. All doctors say her kidneys/heart/lungs - all major organs are great.
Then her oxygen dropped that Thursday to 60 so they admitted her to hospital. Since the last round of new chemo, they said she had fluid overload causing congestive heart failure and pneumonia in her lungs. Went back to oncologist the next Tuesday and they told her the treatments were too hard on her because she wasn't doing well with all the fluid and they couldn't do them without fluid ... so they would have to stop them - then proceeded to tell her that they were having hospice come to their house and she had about 6 months to live.
We are shocked! She is extremely weak from all they symptoms lately but this is an extremely active and healthy grandmother who kept her grandkids and traveled and loved working outdoors ... didn't even have a family doctor because she never had to go to the doctor.
When they first spoke with her they mentioned starting with chemo then the possibility of bone marrow transplant if they needed to go that route. Now he just stopped everything and said there was nothing he could do and she was too old/weak to try the transplant - didn't give it as an option.
We just can't believe all of this is happening too fast and even though we don't want to cling to false hope we are trying to decide the next step(s)
Do we try to get a second opinion from another oncologist? Visit a cancer center?
Any thoughts and advise would be greatly appreciated!
Thank you!
Forums
Re: Treatment stopped due to fluid overload - what to do?
Very sorry to hear about this situation.
YES, seek a second opinion with an oncologist that specializes specifically in multiple myeloma. If you let folks on this forum know what city you are in, folks on this site can make some recommendations of docs/facilities to seek out.
YES, seek a second opinion with an oncologist that specializes specifically in multiple myeloma. If you let folks on this forum know what city you are in, folks on this site can make some recommendations of docs/facilities to seek out.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Treatment stopped due to fluid overload - what to do?
Thank you! We are in the southwest Virginia / Northwest North Carolina area.
Re: Treatment stopped due to fluid overload - what to do?
In Maryland, John Hopkins and the National Cancer Center at the NIH are places to consider
In Virginia itself, see the Virginia facilities in these listings (you can also find contact info for the above places in these links):
https://myelomabeacon.org/resources/treatment-centers/
If your mom is up to it, I wouldn't personally let a little extra travel time influence your decision on where to go.
Note I don't live on the east coast, but seasoned patients that live in that area will likely be chiming in as well.
In Virginia itself, see the Virginia facilities in these listings (you can also find contact info for the above places in these links):
https://myelomabeacon.org/resources/treatment-centers/
If your mom is up to it, I wouldn't personally let a little extra travel time influence your decision on where to go.
Note I don't live on the east coast, but seasoned patients that live in that area will likely be chiming in as well.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Treatment stopped due to fluid overload - what to do?
I agree with second opinion. Perhaps Wake Forest in Winston Salem would be close enough? Or a little further would be University of North Carolina or Duke. All would be good options.
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Dr. Jason Valent - Name: Jason Valent, M.D.
Beacon Medical Advisor
Re: Treatment stopped due to fluid overload - what to do?
There is a new...and pretty incredible treatment facility in Charlotte that is being run by Dr. Usmani formerly #2 guy at Little Rock ... and only 37 years old. It is part of the Levine Cancer Institute and the facility has had money beyond imagination thrown at it. They are now doing their first stem cell transplants and Dr. Usmani has already got the facility involved with about 10 clinical trials.
I go to Duke and I have mad respect for what Dr, G and Scott have accomplished, but Levine Cancer Institute is going to be one of the best anywhere ,,,, and is on the road to that right now!
I did ask Dr. Usmani if he was tied to the Little Rock method and he said he was not. He believes each case is different and each case brings different challenges, and he will suggest treatment tailored to the individual!
I go to Duke and I have mad respect for what Dr, G and Scott have accomplished, but Levine Cancer Institute is going to be one of the best anywhere ,,,, and is on the road to that right now!
I did ask Dr. Usmani if he was tied to the Little Rock method and he said he was not. He believes each case is different and each case brings different challenges, and he will suggest treatment tailored to the individual!
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bluemountain
Re: Treatment stopped due to fluid overload - what to do?
Dr. Usmani would be a great option as well.
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Dr. Jason Valent - Name: Jason Valent, M.D.
Beacon Medical Advisor
Re: Treatment stopped due to fluid overload - what to do?
Thank you for your help!
We are so new to all of this and have been trying to read up on everything we can find to help understand the symptoms and treatments. I just can't believe that she is so weak, not eating or drinking water, and in pain! We want so much to help her and to have hope that we can prolong her life as much as possible with the right steps.
We are going to try to see a specialist next week. I just fear so much that they will say the same thing because of her incredibly weak state and it will cause all of us to completely lose hope. It seems the doctors we've seen so far (nephologist/oncologist, etc) don't see it as serious to offer any other help/advice ... and we take it that with hospice being called that they just don't want us to know that there is absolutely nothing else we can do!
As much as we want her to get better, we also want to know honestly what is really going on.
We are so new to all of this and have been trying to read up on everything we can find to help understand the symptoms and treatments. I just can't believe that she is so weak, not eating or drinking water, and in pain! We want so much to help her and to have hope that we can prolong her life as much as possible with the right steps.
We are going to try to see a specialist next week. I just fear so much that they will say the same thing because of her incredibly weak state and it will cause all of us to completely lose hope. It seems the doctors we've seen so far (nephologist/oncologist, etc) don't see it as serious to offer any other help/advice ... and we take it that with hospice being called that they just don't want us to know that there is absolutely nothing else we can do!
As much as we want her to get better, we also want to know honestly what is really going on.
Re: Treatment stopped due to fluid overload - what to do?
Another thing to watch out for is amyloidosis. That sometimes goes along with multiple myeloma and is just as bad if not worse. I have both and it makes me VERY sensitive to fluids. I had to watch my salt intake like crazy. My breathing would get so bad from extra fluid around my heart I thought I was gonna die. But once they figured it out and I watched the fluid and salt it got so much better. The chemo then started working and made things better as well.
You definitely need to see a myeloma specialist and they will be aware of all these things. They can figure these things out and get your mom back on track.
You definitely need to see a myeloma specialist and they will be aware of all these things. They can figure these things out and get your mom back on track.
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RayGunter - Name: Ray Gunter
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Sept 2011
- Age at diagnosis: 38
Re: Treatment stopped due to fluid overload - what to do?
I feel that in this setting it is a very good idea to seek a second opinion from a myeloma specialist.
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Dr. Ken Shain - Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor
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