Hello
My mom was diagnosied with multiple myeloma in 2008. She had terrible back pain arise after a knee replacement surgery. Three back specialists looked at her but could not find anything. The last one was nice enough to recommend an oncologist. They discovered the multiple myeloma, tumors on the spine. She was 64 at the time. She went thru radiation to shrink the tumors, and was placed on a chemotherapy pill. In 209 she was in and out of the hospital (lung infections, kidney infections, partial hip replacement). Her oncologist has admittedly struggled with her treatment but she has stuck with him, He has repeatedly told here her her numbers are good and he feels the cancer is in remission. He removed her the chmo pill. I convinced her to seek a second opinion with the one guy in our state (2.5 hours away)who specializes in this type cancer. He did some tests and we found her numbers were elevated and he felt she should be back on the chemo pill right away and talked to her about other options if the pill was not effective. Local guy was offended and told my mom she was doing fine and was going to be better which is what my mom wants to hear. She is in and out of the hospital with lung infections, COPD flareups, ect. The last trip they said her red blood cells and plateletts were low, she received two units of red blood cells, but plateletts came up on their own even though she does not maintain a high level. I am just looking for some support/advice here, my gut feeling is that she is entering the last phase of this cancer and hope someone with experience in this can help me.
Kerry
Forums
Re: Introduction
I'm so sorry to hear about your mom. I won't comment on the medical aspects of your mom's situation and will leave that to more MM-experienced folks in the forum. However, I will say that I have little patience for doctors that are intolerant of second and third opinions and I instead seek out doctors that embrace other expert's opinions. I am working with three doctors right now and they all share information and respect one another's opinions when dealing with this most slippery disease.
Really hope that things workout for your mom and that you get some additional medical advice on this forum.
Really hope that things workout for your mom and that you get some additional medical advice on this forum.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Introduction
Hi Kerry,
I'm very sorry to hear about all that your mother has been through.
As you've already learned, myeloma is a relatively rare cancer, so most local oncologists see only a few cases a year. That doesn't mean that there aren't local oncologists who aren't very knowledgeable when it comes to myeloma. But the chances that you'll stumble on to one are not very good.
So you really should consider having your mother go to a larger cancer center that has at least one, if not more than one, multiple myeloma specialists. There is a directory of major U.S. cancer treatment centers here at this site at this link:
https://myelomabeacon.org/resources/treatment-centers/
Odds are that there are several not far from you.
If the treatment your mother was receiving was the first treatment she ever had, she most likely has plenty of other options, so this definitely is not the "end of the line."
If you are in the U.S., then the pill she was taking was probably Revlimid. That means she still could be treated with Velcade, or Kyprolis, as well as several other less common and even experimental drugs.
My recommendation would be to try to schedule an appointment for your mother at a cancer center with at least one or two myeloma specialists, and then see how it goes.
Good luck and please let us know how things go.
I'm very sorry to hear about all that your mother has been through.
As you've already learned, myeloma is a relatively rare cancer, so most local oncologists see only a few cases a year. That doesn't mean that there aren't local oncologists who aren't very knowledgeable when it comes to myeloma. But the chances that you'll stumble on to one are not very good.
So you really should consider having your mother go to a larger cancer center that has at least one, if not more than one, multiple myeloma specialists. There is a directory of major U.S. cancer treatment centers here at this site at this link:
https://myelomabeacon.org/resources/treatment-centers/
Odds are that there are several not far from you.
If the treatment your mother was receiving was the first treatment she ever had, she most likely has plenty of other options, so this definitely is not the "end of the line."
If you are in the U.S., then the pill she was taking was probably Revlimid. That means she still could be treated with Velcade, or Kyprolis, as well as several other less common and even experimental drugs.
My recommendation would be to try to schedule an appointment for your mother at a cancer center with at least one or two myeloma specialists, and then see how it goes.
Good luck and please let us know how things go.
-
TerryH
Re: Introduction
My mom lives in southern rural Virginia. The second opinion we sought was at one of the centers (UNC). Revlimid was the drug she was on. She has not been on anything in almost two years. I hope to convince her to consider a second opinion again, even though I have been trying without sucess for a year and a half.
-
Anonymous
Re: Introduction
Just an update, my mom has taken a turn for the worse. She has had pnuemonia/COPD issues and has been in the hospital 3 times in the last 4-5 weeks. When I arrived at her house last Firday afternoon she was not able to talk and had a high fever (102). We went to the emergency room and they felt it was a continuation of the pnuemonia (mercer based).
She has regressed since she has been in the hospital .She did not eat hardly anything today; is very constipated and having bad adominal pain. The doctor felt that she was improving a little bit yesterday and her blood counts were holding their own. Today blood counts were lower and she was given platlettes. Kidney function is not terrible but not great. Mom is laboring with her breathing.
I know she has a lot stacked against her but I am not ready to throw in the towel. She had restarted the Revlimid after the last release from the hospital but had to stop due to the reoccuring infection.
I am going ask the doctor tomorrow about the possibility of difiticulitius.If anyone else has any suggestions, please pass them along. Also if my emotions are clouding my judgement, please pass along your experiences.
She has regressed since she has been in the hospital .She did not eat hardly anything today; is very constipated and having bad adominal pain. The doctor felt that she was improving a little bit yesterday and her blood counts were holding their own. Today blood counts were lower and she was given platlettes. Kidney function is not terrible but not great. Mom is laboring with her breathing.
I know she has a lot stacked against her but I am not ready to throw in the towel. She had restarted the Revlimid after the last release from the hospital but had to stop due to the reoccuring infection.
I am going ask the doctor tomorrow about the possibility of difiticulitius.If anyone else has any suggestions, please pass them along. Also if my emotions are clouding my judgement, please pass along your experiences.
Re: Introduction
Hi Kerry. My Mom (73) has had a lot of very serious setbacks in the last 6 months also from the multiple myeloma. Low-dose Revlimid/dexamethasone stopped working (she couldn't tolerate higher doses). She decided to take a break from chemo for a few months (her decision, not oncologist's) even though numbers were increasing. In Oct 2012, the multiple myeloma went crazy, numbers went through the roof (we didn't know this though, as she didn't go back to onco for a month, which at that time was normal time frame). She lost 10 pounds (from 98 down to 88) in no time flat, literally a month, and lost all appetite, food tasted terrible, she started slurring words, flat out exhausted as in too tired to feed herself, care for the cats, drive, etc. Her back pain worsened and when the confusion set in finally I got her in to a doctor (I live 8 hours away) - her calcium was sky high and she was in kidney failure (creatinine was up to 5 and her calcium was 15 - serious stuff). She didn't have to go on dialysis. Hospitalized for a week to stabilize, they gave her high dose IV dex, major fluids and blood transfusions (causing overhydration and causing temporary congestive heart failure). Discharged, went back a week later with hospital acquired pneumonia and urinary tract infection (more confusion and high temp). Discharged after 3 days... then the true long haul began. SHe was very weak, highly deconditioned, and was now having to use a rolling walker, short of breath, no appetite, etc.
Onco started her immediately on weekly subcutaneous shot of Velcade/dex - 7 weeks of that and her multiple myeloma got even WORSE. Highest the numbers ever went, and onco was balancing waiting for Velcade to do its job by giving her IV fluids at home weekly (home health care) to keep the high calcium from causing serious problems or affecting her kidneys, and she had several blood transfusions.
Sharing these details so you can see just how serious things were and to share that at least in this case, things can turn around. After all this and her condition, I honestly never imagined she could get better and that surely she was in the last phases of multiple myeloma. But she was not!
When onco realized Velcade was doing nothing, he started her on melphalan and prednisone. THIS has done the trick with minimal (relatively) side effects. Please consider mentioning this to the onco. It is in general well tolerated in older people is what my Mom's onco told us. My Mom immediately after just one round started feeling better (actually the week of the pills, she felt better, coming out of the fog). One cycle is 4 days of pills then off for 3 weeks, then more testing of markers,etc. Onco has followed my Mom's blood tests weekly though, as she remains anemic. But the calcium came down to normal and even low with just one cycle of m&p - which means she felt better quickly.
She is now on round 3 - and already multiple myeloma markers are close to normal. She will have multiple myeloma markers tested next week to see. There is possibility she will be in remission with just 3 rounds of the melphalan and prednisone. Her onco has said she will stop drugs, no maintenance drugs, with close watch of multiple myeloma markers and other labs.
What I have learned is that so many people with multiple myeloma go through very similar phases - life threatening issues even, like pneumonia, kidney failure, etc., with sometimes long slow haul out of these to get back to strength and feeling better - but amazingly, they do. My Mom came to Virginia with us for a couple of months once she got strong enough. She is now bright eyed, not having to use walker, helping us with light chores, caring for her cats, fixing her own lunch, having a great appetite, crocheting and back on her Ipad and Facebook again. Yesterday, she even drove back from her doctor's appointment - she hasn't driven since last October when she had the acute worsening of the multiple myeloma.
So you have one doctor saying the multiple myeloma markers are okay and one who says they are not??
I don't want to give you false hope but at the same time do want to encourage you that sometimes these serious setbacks can be part of the multiple myeloma course (rollercoaster)?
From my standpoint (how I would proceed with my own mom) I would want to see current multiple myeloma markers (serum free light chains, IgG, beta 2 microglobulin, M protein) as well as total protein, calcium, hemoglobin, hematocrit, creatinine and BUN (for kidney function) and see where those are. Is she being given IV fluids? Are they being sure they dont' give her antibiotics/drugs that could further tax the kidneys? Or if they have to give potentially nephrotoxic antibiotics for the MRSA pneumonia, are they pushing fluids to help the kidneys? Is her fever down yet? Did they rule out a urinary tract infection that could be going on in addition (can be common)? I only ask that because sometimes UTIs are not obvious (can cause confusion, no appetite, fever,etc.) in older people. When my Mom had the pneumonia, I pushed to get a urinalysis - they were NOT going to test for it? Sure enough, she had a UTI. Basically they determined she had sepsis. They did blood and urine cultures - the blood culture was indeterminant but they treated her as if she had sepsis (infection of blood, urine, and the pneumonia). These things can really do a number on someone with multiple myeloma, as they are already prone to infections.
I hope this isn't TMI... but this is my experience and I hope it somehow helps you. Please feel free to PM me. Do keep us updated on your mom... hoping that there is improvement for her just around the corner. Take care...
Onco started her immediately on weekly subcutaneous shot of Velcade/dex - 7 weeks of that and her multiple myeloma got even WORSE. Highest the numbers ever went, and onco was balancing waiting for Velcade to do its job by giving her IV fluids at home weekly (home health care) to keep the high calcium from causing serious problems or affecting her kidneys, and she had several blood transfusions.
Sharing these details so you can see just how serious things were and to share that at least in this case, things can turn around. After all this and her condition, I honestly never imagined she could get better and that surely she was in the last phases of multiple myeloma. But she was not!
When onco realized Velcade was doing nothing, he started her on melphalan and prednisone. THIS has done the trick with minimal (relatively) side effects. Please consider mentioning this to the onco. It is in general well tolerated in older people is what my Mom's onco told us. My Mom immediately after just one round started feeling better (actually the week of the pills, she felt better, coming out of the fog). One cycle is 4 days of pills then off for 3 weeks, then more testing of markers,etc. Onco has followed my Mom's blood tests weekly though, as she remains anemic. But the calcium came down to normal and even low with just one cycle of m&p - which means she felt better quickly.
She is now on round 3 - and already multiple myeloma markers are close to normal. She will have multiple myeloma markers tested next week to see. There is possibility she will be in remission with just 3 rounds of the melphalan and prednisone. Her onco has said she will stop drugs, no maintenance drugs, with close watch of multiple myeloma markers and other labs.
What I have learned is that so many people with multiple myeloma go through very similar phases - life threatening issues even, like pneumonia, kidney failure, etc., with sometimes long slow haul out of these to get back to strength and feeling better - but amazingly, they do. My Mom came to Virginia with us for a couple of months once she got strong enough. She is now bright eyed, not having to use walker, helping us with light chores, caring for her cats, fixing her own lunch, having a great appetite, crocheting and back on her Ipad and Facebook again. Yesterday, she even drove back from her doctor's appointment - she hasn't driven since last October when she had the acute worsening of the multiple myeloma.
So you have one doctor saying the multiple myeloma markers are okay and one who says they are not??
I don't want to give you false hope but at the same time do want to encourage you that sometimes these serious setbacks can be part of the multiple myeloma course (rollercoaster)?
From my standpoint (how I would proceed with my own mom) I would want to see current multiple myeloma markers (serum free light chains, IgG, beta 2 microglobulin, M protein) as well as total protein, calcium, hemoglobin, hematocrit, creatinine and BUN (for kidney function) and see where those are. Is she being given IV fluids? Are they being sure they dont' give her antibiotics/drugs that could further tax the kidneys? Or if they have to give potentially nephrotoxic antibiotics for the MRSA pneumonia, are they pushing fluids to help the kidneys? Is her fever down yet? Did they rule out a urinary tract infection that could be going on in addition (can be common)? I only ask that because sometimes UTIs are not obvious (can cause confusion, no appetite, fever,etc.) in older people. When my Mom had the pneumonia, I pushed to get a urinalysis - they were NOT going to test for it? Sure enough, she had a UTI. Basically they determined she had sepsis. They did blood and urine cultures - the blood culture was indeterminant but they treated her as if she had sepsis (infection of blood, urine, and the pneumonia). These things can really do a number on someone with multiple myeloma, as they are already prone to infections.
I hope this isn't TMI... but this is my experience and I hope it somehow helps you. Please feel free to PM me. Do keep us updated on your mom... hoping that there is improvement for her just around the corner. Take care...
-
Twi - Name: Twi
- Who do you know with myeloma?: My wonderful Mom, Janet
- When were you/they diagnosed?: May 2010
- Age at diagnosis: 70
Re: Introduction
Thanks, Twi, for taking the time to share your mother's story with all of us. The information you provided will be useful to many of the Beacon's readers.
Re: Introduction
Thanks for the reply. Fever is down. Doctor says everything points to the pnuemonia getting better. That said, my mom is getting worse. She was laboring for her breath today and they put her on a CPAP. She was receiving breathing treatments prior to this. She has stopped eating and is only drinking water. Doctor has her on antibiotics and fluids. Doctor admitted he did not know what was going on and was doing a test for blood clots, a ct scan for abdominal pain, and starting an antibiotic for a possible fungal infection. he said it could be her gallbladder but I reminded him that was removed years ago. She did have a bowel movement today, she was severely constipated.
If CPCP does not work, life support is next to buy the doctors some time.
If CPCP does not work, life support is next to buy the doctors some time.
-
Reply
Re: Introduction
Too much information?? No way!! As a nurse and multiple myeloma patient myself you gave great information regarding what to look for and how what is assumed to be the cause of a problem is not always the case. Your mom has a wonderful advocate in you. I'm so pleased to hear that your mom is doing well and thank you for posting. I hope you'll keep us updated on her status and continue to share your insights. They are invaluable to those of us (and family members) going through similar situations. Don't forget to take care of yourself!!
-
Pam
Re: Introduction
update my mom had the breathing tube inserted today, bypap did not work. Again all signs point to her getting betting but phyiscally she is getting worse. Doctors do not have any clue right now.
-
reply
11 posts
• Page 1 of 2 • 1, 2
Return to Member Introductions / Personal Stories