My mother 73 yrs was diagnosed with multi myeloma about 3 weeks ago by Dr. Jogenpally at Thomas Hospital in Charleston, WV. I live near Columbus, Oh. and im moving her home with me in a couple days. She is in stage 3 not eating very much and has become very weak. This doctor has set up an appointment with Dr. Hofmeister at OSU on Feb. 17. She has a collapsed L3 vertbral and on heavy meds for pain. My concern is, is this appointment. to late for us due to her condition.
Please respond: Don
Forums
9 posts
• Page 1 of 1
Re: need advice
Definitely not too late.
It's amazing how bad I felt, especially early in the diagnosis. I couldn't help but think it was a one-way direction towards feeling worse until the end. They put me on some stuff which made it hard to get out of bed. But after a few weeks, it wasn't so bad. Then after a few months, I couldn't have been happier. I have had times since diagnosis that have been the happiest moments of my life--honestly. I'm not just saying that to artificially make you feel better about your mothers condition.
Now that they know the cause of her problems, they'll probably put her on some sort of chemo which might, (emphasis on might) make her feel badly for awhile. But after a few months I would almost guarantee that she'll look back and be happier than she is now.
I might be wrong, but I wouldn't pay much heed to the staging. I was between stage 2-3 2 1/2 years ago. I had a PET scan last week and they determined there is no more destructive activity concurring in my bones and I am close to complete remission and no pain anywhere. I'm out and about like everybody else and happy as a clam.
Good luck to you and your mother.
Stan
It's amazing how bad I felt, especially early in the diagnosis. I couldn't help but think it was a one-way direction towards feeling worse until the end. They put me on some stuff which made it hard to get out of bed. But after a few weeks, it wasn't so bad. Then after a few months, I couldn't have been happier. I have had times since diagnosis that have been the happiest moments of my life--honestly. I'm not just saying that to artificially make you feel better about your mothers condition.
Now that they know the cause of her problems, they'll probably put her on some sort of chemo which might, (emphasis on might) make her feel badly for awhile. But after a few months I would almost guarantee that she'll look back and be happier than she is now.
I might be wrong, but I wouldn't pay much heed to the staging. I was between stage 2-3 2 1/2 years ago. I had a PET scan last week and they determined there is no more destructive activity concurring in my bones and I am close to complete remission and no pain anywhere. I'm out and about like everybody else and happy as a clam.
Good luck to you and your mother.
Stan
-
Anonymous
Re: need advice
Not sure why my post ,above, came out as Anonymous. I'll see if this is the same.
Stan
Stan
-
Stann
Re: need advice
Stann,
WooHoooo!!! on the PET results. I am certain that was an awesome uplifting result to hear!
Did you celebrate?
WooHoooo!!! on the PET results. I am certain that was an awesome uplifting result to hear!
Did you celebrate?
-
suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: need advice
Hi Don, my 73 yr old mum was diagnosed last March. She also had a damaged vertebra and was put on some strong pain killers. Her doctors never really told us what stage she was at as they don't feel that it's a major concern. She underwent 2 cycles of chemo and although she responded well, her white blood cells were too low for her to continue with that line of therapy. She was put on thailidomide and has been responding marvelously since. Her back is no longer sore and she's extremely mobile and independent again. Her blood. Punt is improving and she'll be able to start chemo again next month which will hopefully bring her closer towards a full remission. Since mums diagnosis I've been reading up on myeloma and there is so much info out there for you. I would recommend attending a multiple myeloma support group if you have one available; we've taken our mother to some meetings and it's been great for her to meet fellow multiple myeloma suffers and hear of their survival stories. It gives her comfort in knowing that she's not the only person on the planet with this disease that was unheard of in our family's lives until recently. All the very very best to you and your mother, I'm sure all will be good soon, xxxx.
-
Nadia
Re: need advice
Hello Stan,
Not too late at all. My father was diagnosed at 77 years old, it was really bad at first (mainly because he had a compression spine fracture) - but once he got diagnosed and started treatment..... and then after the fracture healed itself..... he was on his way up. It took just a couple of months, but he made a complete turnaround, the multiple myeloma was "stable", and still is FOUR YEARS later. He is now 81 - and leads a very normal life. He was Stage III - with bone damage in his hip/pelvic area.
His treatment [chemo] has been a few things, but mostly (and steadily) -Velcade- for the past four years. He gets it once a week, for four weeks in a row, and then gets a three week rest period. Everyone is different. But i can tell you that aside from some chronic diarreah, he has had very little side effects and the Velcade has been a walk in the park. I imagine that's what they might give your mother, possibly combined with another treatment (pills) - such as Dexamethasone (steriod) and Thalidomide or Revlimid (chemo pill). If the thalidomide or Rev is too much for her, i know at the Huntsman Clinic in Utah, they often give the older folks oral Cytoxan (pill) instead..... combined with the Velcade & Dex. Just something to mention to her docs. One more thing, with this particular cancer, staging is really irrelevant.... so i wouldn't worry too much about that.... unless she has other complications.
The main thing is to get her pain under control first..... She probably needs to see on oncology-orthopedic. They might also start her on something called Aredia - not a chemo, but a bone strengthener. She would receive it in a drip like in IV, probably once a month. My father also got that for two years..... and it works. He had multiple lesions (holes in bones) and the Aredia worked wonders - and also, he had no side effects. But before they would start her on Aredia, they just need to make sure her kidney function is ok (but your doctor should know this already). It will probably take a little time before she feels better, but she will. If she responds to treatment, things should go well. Good luck!
Not too late at all. My father was diagnosed at 77 years old, it was really bad at first (mainly because he had a compression spine fracture) - but once he got diagnosed and started treatment..... and then after the fracture healed itself..... he was on his way up. It took just a couple of months, but he made a complete turnaround, the multiple myeloma was "stable", and still is FOUR YEARS later. He is now 81 - and leads a very normal life. He was Stage III - with bone damage in his hip/pelvic area.
His treatment [chemo] has been a few things, but mostly (and steadily) -Velcade- for the past four years. He gets it once a week, for four weeks in a row, and then gets a three week rest period. Everyone is different. But i can tell you that aside from some chronic diarreah, he has had very little side effects and the Velcade has been a walk in the park. I imagine that's what they might give your mother, possibly combined with another treatment (pills) - such as Dexamethasone (steriod) and Thalidomide or Revlimid (chemo pill). If the thalidomide or Rev is too much for her, i know at the Huntsman Clinic in Utah, they often give the older folks oral Cytoxan (pill) instead..... combined with the Velcade & Dex. Just something to mention to her docs. One more thing, with this particular cancer, staging is really irrelevant.... so i wouldn't worry too much about that.... unless she has other complications.
The main thing is to get her pain under control first..... She probably needs to see on oncology-orthopedic. They might also start her on something called Aredia - not a chemo, but a bone strengthener. She would receive it in a drip like in IV, probably once a month. My father also got that for two years..... and it works. He had multiple lesions (holes in bones) and the Aredia worked wonders - and also, he had no side effects. But before they would start her on Aredia, they just need to make sure her kidney function is ok (but your doctor should know this already). It will probably take a little time before she feels better, but she will. If she responds to treatment, things should go well. Good luck!
Re: need advice
Though I am a bit younger than your mom I was also diagnosed at stage 3. I am now in complete remission. I was treated at University of Arkansas for Medical Sciences Myeloma Institute for Research and Therapy. I personally know a fellow patient there (now 84) who had a stem cell transplant last year. I saw him just this weekend at the IMF Patient & Family Seminar in Florida and he is doing great. There is always hope and lots of great treatments out there. Find you myeloma expert and be sure to get a second opinion. Don't worry about insulting a local doctor... find a myeloma expert and get that second opinion!!!
-
Anonymous
Re: need advice
Dear Don,
Please don't be discouraged, and as others have suggested, try to get an appointment. with a Myeloma specialist. My husband was diagnosed at the age of 62 with stage III, and was in renal failure with multiple lesions. His calcium levels were through the roof, and he was extremely anemic. Once they got his calcium levels flushed out, and under control, his kidney function improved, and he had a port-a-cath implanted, and was set up for chemo. After 4 cycles of a 3 drug combination (my husband had Velcade/ Dexamethasone/ Doxil ) my husband was in near complete remission, and now after completing transplants, he has maintained complete remission for over a year. I would say that the treatments were initially very tough on him, but as the cancer load was knocked down, he felt better and better. Two pieces of advice that I would give you.....ask questions....and get to know what your mother's bloodwork looks like, each week....(ask them for printouts). And be proactive.....don't be afraid to ask for fluids, transfusions, or whatever else your Mom may need. Also....keep an eye on her blood pressure.....if it gets too low, she may be dehydrated, and need IV fluids.
Your mother is lucky she has you as a loving caregiver. We wish you luck, and our prayers are with you for better days ahead.
Debi
Please don't be discouraged, and as others have suggested, try to get an appointment. with a Myeloma specialist. My husband was diagnosed at the age of 62 with stage III, and was in renal failure with multiple lesions. His calcium levels were through the roof, and he was extremely anemic. Once they got his calcium levels flushed out, and under control, his kidney function improved, and he had a port-a-cath implanted, and was set up for chemo. After 4 cycles of a 3 drug combination (my husband had Velcade/ Dexamethasone/ Doxil ) my husband was in near complete remission, and now after completing transplants, he has maintained complete remission for over a year. I would say that the treatments were initially very tough on him, but as the cancer load was knocked down, he felt better and better. Two pieces of advice that I would give you.....ask questions....and get to know what your mother's bloodwork looks like, each week....(ask them for printouts). And be proactive.....don't be afraid to ask for fluids, transfusions, or whatever else your Mom may need. Also....keep an eye on her blood pressure.....if it gets too low, she may be dehydrated, and need IV fluids.
Your mother is lucky she has you as a loving caregiver. We wish you luck, and our prayers are with you for better days ahead.
Debi
-
Debi
Re: need advice
Go, go go for it. It's a HUGE shock at first, but, believe me, the treatments are worth it.
I was diagnosed, with a collapsed C7 vertebrae and in stage 3 at age 65. I'm almost 70 and in remission now. I was treated with Velcade, Revlimid and had a stem cell transplant. Every step was worth it.
Live is given to us in pieces. This is a new one for her and she can do it, with your help and Gods.
Julia Munson
I was diagnosed, with a collapsed C7 vertebrae and in stage 3 at age 65. I'm almost 70 and in remission now. I was treated with Velcade, Revlimid and had a stem cell transplant. Every step was worth it.
Live is given to us in pieces. This is a new one for her and she can do it, with your help and Gods.
Julia Munson
-
Jubyanne - Name: Julia Munson
- Who do you know with myeloma?: myself, son's mother-in-law
- When were you/they diagnosed?: Spring 2008
- Age at diagnosis: 65
9 posts
• Page 1 of 1