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Re: Mother has multiple myeloma - 6 weeks diagnosed and not
That's awesome. I hope that would be in my mom's near future (to be off dialysis). I wonder what parameters she would have to be in for them to say it's okay for her to go off dialysis. thank you
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veganmartin - Name: Kristen
- Who do you know with myeloma?: Mother
- When were you/they diagnosed?: September 2012
- Age at diagnosis: 67
Re: Mother has multiple myeloma - 6 weeks diagnosed and not
With regard to whether dialysis will be permanent, I experienced actue kideny failure (creatinine increased from 1.1 to 10 over a period of only two weeks), six years after my initial myeloma diagnosis, when my myeloma became more active again two years, after a stem cell transplant. I have spoken with several nephrologists at two different hositpals and at the dialysis center, as well as several oncologists. While no one will make any promises, or give me any odds, they all say that there is a chance that my kidneys will recover once the myeloma is under control again. They say it could take several months. To some extent, the likelihood of recover may depend on the type of damage experienced by the kidneys. This can be determined by a kidney biopsy.
I agree with the others questioning whether 67 is too old for a stem cell transplant and think they have been pushing the age to at least 70. Before making a final decision, or undertaking any therapy that would preclude a subsequent transplant, I would check with one of the major stem cell transplant centers. There are several around the country and you can find them on the internet.
Also, myeloma is not all that common and most oncologist do not have a lot of experience with it. While to might want to undergo routine care with a local oncologist for convenience, I'd suggest at least periodically seeing a myeloma specialist, who is up on the latest treatments, as a consulting physician.
I agree with the others questioning whether 67 is too old for a stem cell transplant and think they have been pushing the age to at least 70. Before making a final decision, or undertaking any therapy that would preclude a subsequent transplant, I would check with one of the major stem cell transplant centers. There are several around the country and you can find them on the internet.
Also, myeloma is not all that common and most oncologist do not have a lot of experience with it. While to might want to undergo routine care with a local oncologist for convenience, I'd suggest at least periodically seeing a myeloma specialist, who is up on the latest treatments, as a consulting physician.
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Albert
Re: Mother has multiple myeloma - 6 weeks diagnosed and not
Thank you so much for this info. This is great. Sounds pretty much like my mother - 6 weeks ago (now going on 7 weeks) diagnosed and now she's on dialysis. It would be something to be positive about that she may not have have to be on dialysis forever. I agree - I would like her to see a specialist and I honestly think that is very important. Thank you for reinforcing that! Is there a board on this forum to find a multiple myeloma specialist in/near my area? We are in Buffalo, NY.
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veganmartin - Name: Kristen
- Who do you know with myeloma?: Mother
- When were you/they diagnosed?: September 2012
- Age at diagnosis: 67
Re: Mother has multiple myeloma - 6 weeks diagnosed and not
Hi veganmartin,
The Myeloma Beacon has a Treatment Center Directory:
https://myelomabeacon.org/treatment-centers/
Roswell Park Cancer Center is located in Buffalo, NY.
http://www.roswellpark.org/cancer/myeloma
Best wishes to your mother!
The Myeloma Beacon has a Treatment Center Directory:
https://myelomabeacon.org/treatment-centers/
Roswell Park Cancer Center is located in Buffalo, NY.
http://www.roswellpark.org/cancer/myeloma
Best wishes to your mother!
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veganmartin - Name: Kristen
- Who do you know with myeloma?: Mother
- When were you/they diagnosed?: September 2012
- Age at diagnosis: 67
Re: Mother has multiple myeloma - 6 weeks diagnosed and not
Hi Veganmartin,
Sorry to hear about your mom.
I would highly recommend marinol. I'm not one that thinks marijuana cures many ills, but there can be no doubt that it helps with nausea.
I was on 3 regular anti nausea meds and still couldn't keep anything down for 4 days. I asked for and received marinol and within 45 minutes, I felt fine. And yes, it helped my mood too.
Sorry to hear about your mom.
I would highly recommend marinol. I'm not one that thinks marijuana cures many ills, but there can be no doubt that it helps with nausea.
I was on 3 regular anti nausea meds and still couldn't keep anything down for 4 days. I asked for and received marinol and within 45 minutes, I felt fine. And yes, it helped my mood too.
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stann
Re: Mother has multiple myeloma - 6 weeks diagnosed and not
stann wrote:
> Hi Veganmartin,
> Sorry to hear about your mom.
> I would highly recommend marinol. I'm not one that thinks marijuana cures
> many ills, but there can be no doubt that it helps with nausea.
> I was on 3 regular anti nausea meds and still couldn't keep anything down
> for 4 days. I asked for and received marinol and within 45 minutes, I
> felt fine. And yes, it helped my mood too.
I've got to agree with stann here. It helped me a great deal. Not only with the nausea but more with appetite. I took it for a few weeks after my transplant and it worked wonders for me!
> Hi Veganmartin,
> Sorry to hear about your mom.
> I would highly recommend marinol. I'm not one that thinks marijuana cures
> many ills, but there can be no doubt that it helps with nausea.
> I was on 3 regular anti nausea meds and still couldn't keep anything down
> for 4 days. I asked for and received marinol and within 45 minutes, I
> felt fine. And yes, it helped my mood too.
I've got to agree with stann here. It helped me a great deal. Not only with the nausea but more with appetite. I took it for a few weeks after my transplant and it worked wonders for me!
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Guitarnut - Name: Scott Hansgen
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Sept 2011
- Age at diagnosis: 47
Re: Mother has multiple myeloma - 6 weeks diagnosed and not
Thank you. Yes, she's been on Marinol now for exactly one week. She's now down 40 lbs in 8 weeks. She's completely giving up and is very depressed. Her oncologist and nephrologist ask her why she's not eating and all she says is that she is (she's not being truthful with them) or that she can't. I booked her sister (her best friend) a flight for tomorrow morning. She's flying in and staying with her and my father for as long as needed. We think that she is def clinically depressed, so having someone there all the time to help my father with the cooking and emotional support for my mother will help a great deal. She's so weak now that she can't do anything for herself. I booked an appointment w/ her primary for this week and have filled him in on her mental status. No one has addressed that yet and it's a big piece of the puzzle. It's heart breaking to see her spiral downward so fast.
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veganmartin - Name: Kristen
- Who do you know with myeloma?: Mother
- When were you/they diagnosed?: September 2012
- Age at diagnosis: 67
Re: Mother has multiple myeloma - 6 weeks diagnosed and not
I'm new here being diagnosed in Aug and currently going thru chemo before a SCT in January. Like your mother I fell into a very depressed mood right after diagnosis. I really spiraled down in a hurry eventually leading me to my first hospital stay as my physical condition deteriorated. It's a weird feeling when you get that low after being a positive person for your entire life. Nothing my wife or kids did seemed to help me out. My oncologist gave me anti depressants which I guess is commonly prescribed for cancer patients. I took them for a couple of months and it picked me up and got my head moving in the right direction. Once that happened my physical side started making huge improvements. I've still got the same cancer, the same diagnosis, the same struggles as I had months ago, but now my head is oriented in the right direction and progress is being made. I hope for the best for your mother and she is lucky to have such a great care giver as yourself. I'd have been dead a months ago had my wife not pursued a resolution just like you are doing with your mother. Jerry
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JBarnes - Name: Jerry Barnes
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Aug 17, 2012
- Age at diagnosis: 54
Re: Mother has multiple myeloma - 6 weeks diagnosed and not
I am a 70 year old male diagnosed with multiple myeloma In January 2012. I was quite advanced so my oncologist recommended we begin therapy immediately. Over the course of the next four months I had lost 50 pounds and had two surgeries one on each leg and hip. I know what it is not to eat and become nauseated at the sight of food. There are drugs that stimulate appetite. She needs to find what can work for her to stimulate her appetite. Is there anything that sounds good to her. I started with root beer floats. That sounded good to me so I forgot about what was most nourishing and ate root beer floats. My body needed to learn to accept food again, and it did. Your mom can't give up. She is fortunate to have you as a caregiver.
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Ed Garbarino
36 posts
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