My wife, 48 years old, was diagnosed with multiple myeloma on December 5, 2015.
That is all we have been told. The pathology came back late Friday after biopsy of a rib with multiple pathologic fractures. Her oncologist is off duty till tomorrow. She did have one radiation treatment on December 4, 2015, of the T9 vertebrae, which is 40 to 60 % gone.
My wife has been ill off and on for at least the last year. Just general, non-specific not feeling well.
We have a adult daughter who is a quad amputee since October of 2008, second to septic shock. My wife has been helping her with day-to-day life, that sometimes requires lifting and tugging.
On October 20th, 2015. I took her to the hospital ER due to unmanageable left mid-side pain. I attributed it to the lifting and was highly suspicious of a muscle strain that wasn't responding to anti inflammatory medications. The ER felt the same and prescribed a muscle relaxer as well as a narcotic for pain.
She did have some relief with the medications, though they did not abolish the pain. The pain moved to her back with a vengeance, a couple of emergency room visits as well as PCP visits to try to control the pain till we could get an MRI.
She had an MRI of her back three weeks ago and found lesions throughout her spine, multiple ribs, right pelvis, and right upper femur, as well as a mass on her thyroid, left breast, and left kidney with hypodensity of the kidney as well. Everything other than the T9 was picked up via CT with PO and IV contrast.
This past Monday, November 30, 2015, we had an appointment with a neurologist for the T9 vertebrae. He wanted to do a kyphoplasty and admitted her to the hospital for surgery the next morning.
Labs were drawn that night and come back with a potassium of 2.6, calcium of 12.2, creatinine of 2.2, with an overall decrease in renal function.
She had a steady drop in her hemoglobin and hemicort, she received two units of blood Wednesday, her labs have improved to normal. Except now her ammonia level is 53 up from 51 yesterday and with being treated with lactulose. She has had some of the other lab work out of normal, I just can't remember them.
She has been severely confused and belly breathing at times. I'm thinking it is second to the elavated ammonia and is a common symptom with that. She is now on oxygen at 2 LPM by nasal cannula. She gets moderately to severely short of breath on exertion. Also desats to 84 from 96 within 90 seconds of being off of her oxygen.
Sorry for the length of this message, I just want to provide as much information as I can.
I am outside of my element with this, I have little to no knowledge about the disease process of cancer. I have yet to be given any information from the oncologist as well.
So I'm going a little insane with the unknown.
From what I am seeing from a purely medical stand point, my wife is very sick. Mix that with the multiple myeloma, it makes me feel that she is well advanced in the multiple myeloma process.
I need and want to know about what we can expect, what kind of prognosis are we looking at?
We are realistic people and believe in Jesus, not so much unicorns and leprechauns at the end of the rainbow type people. If you do, that is fine, and we understand that sometimes people need to find hope and comfort where they can. We though believe in our Lord and believe miracles happen if it is in God's plan.
So with all of the above, can anyone please give me some idea of how advanced her multiple myeloma is and a possible prognosis?
I understand that every patient is different.
Thanks, Jeff
Forums
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wvmedic - Name: Jeff
- Who do you know with myeloma?: Wife
- When were you/they diagnosed?: 12/05/2015
- Age at diagnosis: 48
Re: Wife newly diagnosed - how advanced is her disease?
Jeff,
I don't have an answer for you. I urge you, however, not to get ahead of yourself. Easier said than done. Your wife is now receiving attention; that can only be a good thing. As with all of us, waiting is the hardest part.
All the best
Vicki
I don't have an answer for you. I urge you, however, not to get ahead of yourself. Easier said than done. Your wife is now receiving attention; that can only be a good thing. As with all of us, waiting is the hardest part.
All the best
Vicki
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vicstir - Name: Vic
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 39
Re: Wife newly diagnosed - how advanced is her disease?
I forgot to add that she hasn't been eating. In the last two in a half weeks, she has only ate one grilled cheese and about a fourth of a can of tomato soup.
Jeff
Jeff
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wvmedic - Name: Jeff
- Who do you know with myeloma?: Wife
- When were you/they diagnosed?: 12/05/2015
- Age at diagnosis: 48
Re: Wife newly diagnosed - how advanced is her disease?
Hi Jeff,
A few things jump out at me in your post.
She is hypercalcemic by multiple myeloma standards.
She has reduced renal function.
It sounds like there is a strong possibility that her skeletal issues are due to multiple myeloma.
You say she has reduced hemoglobin (so much so, that she has to receive blood). What exactly is her hemoglobin level?
It sounds like she meets most of the CRAB criteria associated with multiple myeloma (google on "CRAB criteria myeloma"). Meeting any one of the CRAB criteria, signifies symptomatic multiple myeloma.
So, it truly sounds like she may does indeed have symptomatic multiple myeloma, which requires multiple myeloma drug treatment ASAP (not just radiation therapy). The disease stage is not so important since most folks will respond quite well to multiple myeloma drug therapy, regardless of stage.
But absolutely the most important thing she can be doing is to be seen by a top multiple myeloma specialist (not just an oncologist/hematologist that may have some patients with multiple myeloma). If you let us know what city you are in, folks can recommend some top specialists and/or institutions.
A few things jump out at me in your post.
She is hypercalcemic by multiple myeloma standards.
She has reduced renal function.
It sounds like there is a strong possibility that her skeletal issues are due to multiple myeloma.
You say she has reduced hemoglobin (so much so, that she has to receive blood). What exactly is her hemoglobin level?
It sounds like she meets most of the CRAB criteria associated with multiple myeloma (google on "CRAB criteria myeloma"). Meeting any one of the CRAB criteria, signifies symptomatic multiple myeloma.
So, it truly sounds like she may does indeed have symptomatic multiple myeloma, which requires multiple myeloma drug treatment ASAP (not just radiation therapy). The disease stage is not so important since most folks will respond quite well to multiple myeloma drug therapy, regardless of stage.
But absolutely the most important thing she can be doing is to be seen by a top multiple myeloma specialist (not just an oncologist/hematologist that may have some patients with multiple myeloma). If you let us know what city you are in, folks can recommend some top specialists and/or institutions.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Wife newly diagnosed - how advanced is her disease?
Jeff, You should be aware that quite a few people who participate in this forum have described their own initial experiences as more than discouraging. They believed that they were in advanced stages of myeloma when first learning of their condition, practically at death's door. However, after receiving appropriate treatment they responded so well that they are now in complete remission. Do not despair, but seek immediate help from specialists who know what they are doing, just as Multibilly advises. Your wife is too young to give up. You should also try to do the impossible to make her eat. This is a time when she needs good nourishment. I wish you the best of luck. It is clearly a difficult time for you both.
Re: Wife newly diagnosed - how advanced is her disease?
Multibilly, her hemoglobin was 7.0 at transfusion. It is 8.2 today.
We are in Charleston, West Virginia.
Her mental status has improved considerably this afternoon. Her renal function is low, we should know a treatment plan tomorrow. I understand the medical side of the lab results for the most part. I have no idea how it plays in with the multiple myeloma as I have no real hands-on experience with cancer of any kind when it comes to treatment.
I appreciate your reply, I am extremely happy with her improvement in her mental status today. So much so that I now am very hopeful of a chance in my Wife being able to have a quality of life for a while at least. From just a general medical stand point, I was scared and felt her prognosis was very poor at best. Now not so much, I now have some hope.
Jeff
We are in Charleston, West Virginia.
Her mental status has improved considerably this afternoon. Her renal function is low, we should know a treatment plan tomorrow. I understand the medical side of the lab results for the most part. I have no idea how it plays in with the multiple myeloma as I have no real hands-on experience with cancer of any kind when it comes to treatment.
I appreciate your reply, I am extremely happy with her improvement in her mental status today. So much so that I now am very hopeful of a chance in my Wife being able to have a quality of life for a while at least. From just a general medical stand point, I was scared and felt her prognosis was very poor at best. Now not so much, I now have some hope.
Jeff
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wvmedic - Name: Jeff
- Who do you know with myeloma?: Wife
- When were you/they diagnosed?: 12/05/2015
- Age at diagnosis: 48
Re: Wife newly diagnosed - how advanced is her disease?
I am not sure if WV has any myeloma specialists, as it is fairly rural state; like Multibilly mentioned, a Multiple Myeloma specialist, at least for some direction on how to proceed, is a must.
Maybe someone knows better, but I would say UPMC in Pittsburgh or OSU Myeloma Clinic would be the closest to Charleston WV
Maybe someone knows better, but I would say UPMC in Pittsburgh or OSU Myeloma Clinic would be the closest to Charleston WV
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Wife newly diagnosed - how advanced is her disease?
That's a very low hemoglobin level. So, she is definitely anemic (the "A" in CRAB) by multiple myeloma standards.
This is a listing of institutions with multiple myeloma specialists throughout the USA. You may need to do a road trip to a neighboring state to find a top multiple myeloma specialist.
https://myelomabeacon.org/resources/treatment-centers/
Note that you can always consult with a specialist in a neighboring state and then have your local oncologist administer the treatment under the guidance of the specialist. It's not as if one needs to continually go out of state to get top care for multiple myeloma. The reason I am adamant about seeing a specialist is that there is a lot of nuance to treating multiple myeloma and most oncologists just aren't up on the cutting edge research that is being done with multiple myeloma.
While WVU in Morgantown doesn't have any multiple myeloma specialists that I know of, they are involved in some multiple myeloma trials. So, that might be your best bet for in-state consults in WV...although not ideal.
This is a listing of institutions with multiple myeloma specialists throughout the USA. You may need to do a road trip to a neighboring state to find a top multiple myeloma specialist.
https://myelomabeacon.org/resources/treatment-centers/
Note that you can always consult with a specialist in a neighboring state and then have your local oncologist administer the treatment under the guidance of the specialist. It's not as if one needs to continually go out of state to get top care for multiple myeloma. The reason I am adamant about seeing a specialist is that there is a lot of nuance to treating multiple myeloma and most oncologists just aren't up on the cutting edge research that is being done with multiple myeloma.
While WVU in Morgantown doesn't have any multiple myeloma specialists that I know of, they are involved in some multiple myeloma trials. So, that might be your best bet for in-state consults in WV...although not ideal.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Wife newly diagnosed - how advanced is her disease?
Little Monkey and Multibilly,
Thank you for the response, I will check the link.
Also, I will talk with the oncologist tomorrow. At least I hope to. I will see what his experience is with myeloma.
Thank you for the response, I will check the link.
Also, I will talk with the oncologist tomorrow. At least I hope to. I will see what his experience is with myeloma.
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wvmedic - Name: Jeff
- Who do you know with myeloma?: Wife
- When were you/they diagnosed?: 12/05/2015
- Age at diagnosis: 48
Re: Wife newly diagnosed - how advanced is her disease?
Jeff,
Not to belabor the point too much, but most oncologists / hematologists will say that they have experience with multiple myeloma. My current hematologist (who I use for routine testing and who I respect a lot) has dozens of myeloma patients, but he is not a myeloma specialist. A multiple myeloma specialist will be doing active research in the field of multiple myeloma, will have published papers on multiple myeloma, will routinely attend key conferences like ASH, will be involved in myeloma clinical trials, etc.
Not to belabor the point too much, but most oncologists / hematologists will say that they have experience with multiple myeloma. My current hematologist (who I use for routine testing and who I respect a lot) has dozens of myeloma patients, but he is not a myeloma specialist. A multiple myeloma specialist will be doing active research in the field of multiple myeloma, will have published papers on multiple myeloma, will routinely attend key conferences like ASH, will be involved in myeloma clinical trials, etc.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
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