Good morning all,
My dad (54 years old) was diagnosed with multiple myeloma last week after a week in the hospital due to acute renal failure. Before the New Year (2017), he was totally normal and active with no physical or health related complaints. He hurt his back at work in January and began to see a physical therapist and was being monitored by his regular doctor for this "injury". He also had an MRI on his back which was reviewed by a spinal surgeon who advised his spine was "totally normal for a man his age".
Early February he came down with flu like symptoms and a very powerful cough. He was seen by his PCP and told he had bronchitis. We treated the bronchitis and he began to feel better except for the back pain and nausea. Last Friday (Feb 17) he couldn't handle the back pain and stomach issues any longer, so I took him to his doctor and they did a CBC and sent him for a scan of his abdomen, suspecting an intestinal issue. 24 hours later, Saturday night, we got the call that he had to go to the emergency room (ER) ASAP due to acute renal failure. His creatinine was checked Feb 1st and it was normal and by February 17th it had risen to 5.7.
In the hospital they performed dozens of blood tests, a kidney biopsy, and a bone marrow biopsy. In the meantime he was placed on dialysis as his creatinine levels rose to 10. The nephrologist advised that there is no physical damage to his kidneys, it is just the cancerous M proteins in his blood causing the kidneys to fail. We were officially told Friday that he has stage III multiple myeloma and he begins treatment today of Velcade and Cytoxan.
Now, my question for all of you. I would like to know what questions I should be asking the doctors to understand his prognosis. They haven't been very forthcoming with information and I have done a lot of research on this cancer, but it is so complex I am not sure the right questions to ask. I basically want to know how bad has his cancer progressed and with that data, how likely is it that he can recover or stabilize. It is confusing to me that his kidneys were fine on Feb. 1st and completely failing Feb. 17th.
Any advice would be so helpful and much appreciated. Thankfully my family has never been effected directly from cancer so we are "new" to this and it is so overwhelming.
Christie
Forums
4 posts
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ChristieR - Name: Christie
- Who do you know with myeloma?: My dad
- When were you/they diagnosed?: February 2017
- Age at diagnosis: 54
Re: What affects a multiple myeloma patient's prognosis?
Christie, I'm sorry your dad has received this diagnosis and it took some time to find the real problem. That, unfortunately does not seem uncommon. It's great that you are there to support him and have reached out here for some assistance. You'll find this community is very knowledgeable and helpful.
I can't give you a lot of answers based on what you have said, but I think some general information that can be helpful and may reduce your stress a bit.
First, staging for multiple myeloma is not like other cancers. The fact they said "stage III" only indicates how involved the cancer is at the point of diagnosis. Since he was in kidney failure, that, with other issues, dictates the staging. Patients can still respond very well to treatment and have good survival, even if they are diagnosed with a later stage as your father was.
I don't have experience with the kidney failure, but it sounds like he has not damaged the kidneys so if they successfully reduce the proteins, his kidneys can recover.
When you see the doctors you will want more information from the biopsy. Was a FISH testing done? Does he have any abnormalities that would put him in a higher risk category? The answer to this question will help you understand his prognosis.
You will want to have your dad consult a myeloma specialist. He may see a general oncologist or hematologist, but this is a rare cancer and you want him treated by someone very familiar with the disease and the most recent treatments.
Good luck. It is scary and confusing, but there is a lot of hope and good science helping us all every day.
I can't give you a lot of answers based on what you have said, but I think some general information that can be helpful and may reduce your stress a bit.
First, staging for multiple myeloma is not like other cancers. The fact they said "stage III" only indicates how involved the cancer is at the point of diagnosis. Since he was in kidney failure, that, with other issues, dictates the staging. Patients can still respond very well to treatment and have good survival, even if they are diagnosed with a later stage as your father was.
I don't have experience with the kidney failure, but it sounds like he has not damaged the kidneys so if they successfully reduce the proteins, his kidneys can recover.
When you see the doctors you will want more information from the biopsy. Was a FISH testing done? Does he have any abnormalities that would put him in a higher risk category? The answer to this question will help you understand his prognosis.
You will want to have your dad consult a myeloma specialist. He may see a general oncologist or hematologist, but this is a rare cancer and you want him treated by someone very familiar with the disease and the most recent treatments.
Good luck. It is scary and confusing, but there is a lot of hope and good science helping us all every day.
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Mark Pouley - Name: Mark
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 53
Re: What affects a multiple myeloma patient's prognosis?
Christie,
Sorry to welcome you to this forum. Let me be the first, of many I'm sure, to recommend your father consult with a myeloma specialist.
Most specialist will use information gathered in the bone marrow analysis to create an initial treatment plan, and that may be were he is at now.
However, if your dad chooses, as I did, to participate in a clinical trial, be aware if he starts a treatment regimen right away, he might exclude himself from future attractive clinical trials. That's the beast of clinical trials as I understand it.
Generally, myeloma allows newly diagnosed patients a period of time (weeks to months) to research their best options. It appears your father's renal conditions might accelerate the time period usually available for new patients to research their options. Myeloma can permanently damage kidneys. I just wanted you to understand decisions made now may limit future options. I'm not implying that whatever treatment he starts with he has to stick with. He will be able to pursue most treatment options in the future, but maybe not in clinical trials.
The best prognosis for a myeloma patient is to be proactive and have an advocate, which he already has in you.
Sorry to welcome you to this forum. Let me be the first, of many I'm sure, to recommend your father consult with a myeloma specialist.
Most specialist will use information gathered in the bone marrow analysis to create an initial treatment plan, and that may be were he is at now.
However, if your dad chooses, as I did, to participate in a clinical trial, be aware if he starts a treatment regimen right away, he might exclude himself from future attractive clinical trials. That's the beast of clinical trials as I understand it.
Generally, myeloma allows newly diagnosed patients a period of time (weeks to months) to research their best options. It appears your father's renal conditions might accelerate the time period usually available for new patients to research their options. Myeloma can permanently damage kidneys. I just wanted you to understand decisions made now may limit future options. I'm not implying that whatever treatment he starts with he has to stick with. He will be able to pursue most treatment options in the future, but maybe not in clinical trials.
The best prognosis for a myeloma patient is to be proactive and have an advocate, which he already has in you.
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blueblood - Name: Craig
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 54
Re: What affects a multiple myeloma patient's prognosis?
I apologize for my lack of response from my initial post. It has been a crazy ride since my father's diagnosis. I did read these responses then and I thank you for your guidance. We did consult with a myeloma specialist and we also did a FISH test. I looked into some clinical trails but considering my dad's heavily impaired kidneys at the time, he was not eligible to do much. I am so grateful to say that after 6 weeks of dialysis his kidney function returned, fully functioning and NORMAL. He then transitioned to Revlimid, Kyprolis, and dexamethasone as his treatment regimen, and that really did the trick. His kappa free light chains went from 13,974 mg/L to (as of 2 weeks ago) 2 mg/L. It has been a true miracle to see that number decrease so drastically in a short period of time.
As of this week he is undergoing the initial steps to be admitted for his stem cell transplant in about 2 weeks, his harvesting starts Wednesday and his port placement is this afternoon. We are experiencing so many emotions, fear and anxiety unfortunately are taking precedence. But we are trying to remain positive. We made it this far through kidney failure, dialysis, pneumonia, relentless skin rashes, and kyphoplasty surgeries to relieve his compression fractures, this will just be another step in the right direction toward a healthy and happy life.
Thank you so much for your guidance then, I was so ill-informed on multiple myeloma and had no idea what we were getting into. I now have become more educated now and have a better idea of what we are up against.
I wish you the best of luck in your journeys and hope you are feeling as well as you deserve to.
Best,
Christie
As of this week he is undergoing the initial steps to be admitted for his stem cell transplant in about 2 weeks, his harvesting starts Wednesday and his port placement is this afternoon. We are experiencing so many emotions, fear and anxiety unfortunately are taking precedence. But we are trying to remain positive. We made it this far through kidney failure, dialysis, pneumonia, relentless skin rashes, and kyphoplasty surgeries to relieve his compression fractures, this will just be another step in the right direction toward a healthy and happy life.
Thank you so much for your guidance then, I was so ill-informed on multiple myeloma and had no idea what we were getting into. I now have become more educated now and have a better idea of what we are up against.
I wish you the best of luck in your journeys and hope you are feeling as well as you deserve to.
Best,
Christie
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ChristieR - Name: Christie
- Who do you know with myeloma?: My dad
- When were you/they diagnosed?: February 2017
- Age at diagnosis: 54
4 posts
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