Greetings to all. Can't say that I'm glad to be on this forum but am happy it is here.
My 73 year old husband unexpectedly received this diagnosis on Tuesday. We are still in the gathering info stage, so I will not go into details at this time. To say the least, we are still in shock.
Following the doctor visit, he went and had a radiographic skeletal survey done as well as bloodwork and urinalysis. He will be having a bone marrow biopsy this coming Wednesday. His follow-up appointment is scheduled in three weeks, so we will obviously know more then. I believe he is probably is in the smoldering stage, but that remains to be seen.
He is a metastatic melanoma survivor (1985) and is currently under surveillance for prostate cancer, which was diagnosed last year. In addition, he has a longstanding tumor on his pancreas which is also being watched. Now this!
Will check back in when we know more. The oncologist is local, but we may head to Memorial Sloan Kettering for a 2nd opinion and even treatment. It is only 90 minutes away and he's been a patient there several times. They are the ones who saved his life from the melanoma.
Hope all are doing well in spite of this ugly disease. Both of us are retired radiologic technologists and have worked with patients with multiple myeloma. It was never pleasant. However, that was years ago, and I know treatments now make this situation more encouraging.
Bye for now.
Forums
-
Halches - Name: Carol S
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 7/15
- Age at diagnosis: 73
Re: Husband newly diagnosed
Hello Carol,
I am sorry to hear about your husband's diagnosis. Hopefully, it ends up being just smoldering myeloma, or perhaps even monoclonal gammopathy of undetermined significance (MGUS), which would be a rather benign diagnosis compared to what your husband (unfortunately) has experienced already.
If you have not already done so, you may want to read the diagnostic criteria section of the Wikipedia article on multiple myeloma.
The criteria described there are basically the ones that are used today for determining whether someone has (symptomatic) multiple myeloma, smoldering multiple myeloma, or MGUS. Just keep in mind that the diagnostic criteria were changed a bit last year; you can read about the changes in this article:
SV Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," The Myeloma Beacon, Oct 26, 2014
which also gives a link to the journal article where the new criteria are described in detail.
The key things you want to focus on are your husband's
I hope, however, that they come back with clear signs that whatever he has is relatively benign.
Sloan-Kettering, by the way, has some top-notch myeloma experts, so your husband would be in good hands there.
Cheers!
I am sorry to hear about your husband's diagnosis. Hopefully, it ends up being just smoldering myeloma, or perhaps even monoclonal gammopathy of undetermined significance (MGUS), which would be a rather benign diagnosis compared to what your husband (unfortunately) has experienced already.
If you have not already done so, you may want to read the diagnostic criteria section of the Wikipedia article on multiple myeloma.
The criteria described there are basically the ones that are used today for determining whether someone has (symptomatic) multiple myeloma, smoldering multiple myeloma, or MGUS. Just keep in mind that the diagnostic criteria were changed a bit last year; you can read about the changes in this article:
SV Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," The Myeloma Beacon, Oct 26, 2014
which also gives a link to the journal article where the new criteria are described in detail.
The key things you want to focus on are your husband's
- Serum protein electrophoresis (SPEP) - What is his monoclonal protein level, or "M-spike" -- if any?
- Serum immunofixation electrophoresis (IFE) - Is there a sign of a monoclonal protein?
- Serum free light chain (FLC) test results - Are any FLCs elevated, and is the ratio elevated?
- Skeletal survey results - Are there signs of lytic lesions?
- Bone marrow biopsy results - What percent of the cells are monoclonal plasma cells?
- Haemoglobin, creatinine, and calcium levels - Are there symptoms of the disease impacting red blood cell production, the kidney, or bones?
I hope, however, that they come back with clear signs that whatever he has is relatively benign.
Sloan-Kettering, by the way, has some top-notch myeloma experts, so your husband would be in good hands there.
Cheers!
Re: Husband newly diagnosed
How fast things change! Husband had blood work and bone marrow biopsy on Wednesday. And today he was admitted to the hospital. 89% disease in marrow. Multiple lytic lesions. Mild renal failure. Wow!
Sure does explain a lot of things going on with him recently. As they say, hindsight is 20/20.
After waiting to be admitted for 6 hours, he is now in a room and nurse is getting his IV fluids ready. Treatment is going to start tomorrow. He is expected to be in for several days.
I'm exhausted. Will be heading home soon to regroup.
Sure does explain a lot of things going on with him recently. As they say, hindsight is 20/20.
After waiting to be admitted for 6 hours, he is now in a room and nurse is getting his IV fluids ready. Treatment is going to start tomorrow. He is expected to be in for several days.
I'm exhausted. Will be heading home soon to regroup.
-
Halches - Name: Carol S
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 7/15
- Age at diagnosis: 73
Re: Husband newly diagnosed
Sorry to hear the news about your husband, Carol. It is good, however, that he'll be starting treatment soon.
Your husband's doctors almost certainly will treat him with Velcade and dexamethasone initially, given the mild renal failure you mentioned. Velcade generally is recommended for use in newly diagnosed patients with renal issues.
If his doctors also want to use Revlimid, they will need to keep in mind that its dose has to be adjusted for renal issues. Dosing information for Revlimid can be found in its official FDA-approved prescribing information:
http://www.accessdata.fda.gov/drugsatfda_docs/label/2015/021880s041lbl.pdf
Regardless of where you are right now, it's important that your husband start treatment soon to avoid further damage to his bones, kidneys, and other organs from the myeloma. At the same time, if you haven't already done so, I think it would be useful to make plans to see a myeloma specialist at a centre such as Sloan-Kettering.
The other thing I would recommend is to start a folder or binder with all your husband's test results so that you have them easily available in the future. My understanding is that, as a patient in the States, you have a right to all your test results, so make sure you get copies and keep them in the binder for future reference.
Since your husband had a bone marrow biopsy, it's probably the case that they ran tests on the biopsy sample to determine what kinds of chromosomal abnormalities, if any, were found in the myeloma cells found in the biopsy. The chromosomal abnormality information is VERY important; it is the main factor that affects a patient's "risk" status, which is a projection of how aggressive the patient's disease is likely to be. (High-risk signifies disease that's likely to be more aggressive; low-, or standard-risk, disease signifies disease that's likely to be less aggressive; and there's often an intermediate-risk category, as well.)
You will be bombarded with a lot of information in the coming days during the meetings you'll have with doctors and nurses. One thing you should consider doing is recording the conversations you have with the medical professionals, so you can listen again later to the conversations, make notes, and figure out follow-up questions you may have. When at all possible, make sure both of you are present during the discussions, so that both can help remember questions you may have. Jot down questions in advance of discussions, if you can.
Finally, don't hesitate to ask questions here about issues that come up. Use the forum search box and the site search box, and focus on one- or two-keyword searches (like "Velcade", "FISH", "risk", "FLC", etc.) If you're good with computers and the Internet, experiment with the forum's advanced search capability; it will allow you to do things like find all forum discussions that have either "FLC" or "light" or "chain" or "chains" in the discussion topic.
Good luck, and remember that multiple myeloma is now a very, very treatable disease. There's still no cure for most patients, but, in many cases, the disease can be kept under control for a very long time.
Your husband's doctors almost certainly will treat him with Velcade and dexamethasone initially, given the mild renal failure you mentioned. Velcade generally is recommended for use in newly diagnosed patients with renal issues.
If his doctors also want to use Revlimid, they will need to keep in mind that its dose has to be adjusted for renal issues. Dosing information for Revlimid can be found in its official FDA-approved prescribing information:
http://www.accessdata.fda.gov/drugsatfda_docs/label/2015/021880s041lbl.pdf
Regardless of where you are right now, it's important that your husband start treatment soon to avoid further damage to his bones, kidneys, and other organs from the myeloma. At the same time, if you haven't already done so, I think it would be useful to make plans to see a myeloma specialist at a centre such as Sloan-Kettering.
The other thing I would recommend is to start a folder or binder with all your husband's test results so that you have them easily available in the future. My understanding is that, as a patient in the States, you have a right to all your test results, so make sure you get copies and keep them in the binder for future reference.
Since your husband had a bone marrow biopsy, it's probably the case that they ran tests on the biopsy sample to determine what kinds of chromosomal abnormalities, if any, were found in the myeloma cells found in the biopsy. The chromosomal abnormality information is VERY important; it is the main factor that affects a patient's "risk" status, which is a projection of how aggressive the patient's disease is likely to be. (High-risk signifies disease that's likely to be more aggressive; low-, or standard-risk, disease signifies disease that's likely to be less aggressive; and there's often an intermediate-risk category, as well.)
You will be bombarded with a lot of information in the coming days during the meetings you'll have with doctors and nurses. One thing you should consider doing is recording the conversations you have with the medical professionals, so you can listen again later to the conversations, make notes, and figure out follow-up questions you may have. When at all possible, make sure both of you are present during the discussions, so that both can help remember questions you may have. Jot down questions in advance of discussions, if you can.
Finally, don't hesitate to ask questions here about issues that come up. Use the forum search box and the site search box, and focus on one- or two-keyword searches (like "Velcade", "FISH", "risk", "FLC", etc.) If you're good with computers and the Internet, experiment with the forum's advanced search capability; it will allow you to do things like find all forum discussions that have either "FLC" or "light" or "chain" or "chains" in the discussion topic.
Good luck, and remember that multiple myeloma is now a very, very treatable disease. There's still no cure for most patients, but, in many cases, the disease can be kept under control for a very long time.
Re: Husband newly diagnosed
Sorry to hear about your husband's situation; keep us up to date how any immediate treatment is working.
-
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: Husband newly diagnosed
I have been reading and researching in this forum for over a year, and I just want to say that you guys are awesome.
My best friend has multiple myeloma, that is why I am here. She is not. She is not the kind of person who wants to know all about things and would prefer to trust in her doctor. I, on the other hand, have to know everything! I trust no one until I have the knowledge I need to assess the information I am given. (My friend says I am a pain in the ass with all my questions.)
Thank you all so much for your wonderful caring empathy and knowledgeable responses. Sometimes I think there is someone out there who is reading my mind and sends one of you to answer my unspoken questions.
Soon I will be brave enough to introduce her story and meet you all. Her physical quality of life is very sad as she has not been capable of leaving her house except for chemo and bloodwork and oncology visits for at least 2 years due to pain and spinal instability from multiple compression fractures. She had her last of 8 rounds of chemo last Wednesday.
I do not know what is next.
My best friend has multiple myeloma, that is why I am here. She is not. She is not the kind of person who wants to know all about things and would prefer to trust in her doctor. I, on the other hand, have to know everything! I trust no one until I have the knowledge I need to assess the information I am given. (My friend says I am a pain in the ass with all my questions.)
Thank you all so much for your wonderful caring empathy and knowledgeable responses. Sometimes I think there is someone out there who is reading my mind and sends one of you to answer my unspoken questions.
Soon I will be brave enough to introduce her story and meet you all. Her physical quality of life is very sad as she has not been capable of leaving her house except for chemo and bloodwork and oncology visits for at least 2 years due to pain and spinal instability from multiple compression fractures. She had her last of 8 rounds of chemo last Wednesday.
I do not know what is next.
Re: Husband newly diagnosed
Hi Carol,
I am a patient at Memorial Sloan Kettering and I've been very pleased with the care I've gotten there over the past 2 1/2 years since I began my treatment.
Also, I want to follow up on what Ian said about getting your test results. Like many other places, MSK has a patient portal through which you can view many of your test results. I'm in a routine now where I get my blood drawn in the morning and some of the key results are in the portal in time for me to discuss them with my dr when I see him in the afternoon during my monthly visits. Very timely and convenient!
Best wishes to you and your husband. Please keep us posted on how things go.
Mike
I am a patient at Memorial Sloan Kettering and I've been very pleased with the care I've gotten there over the past 2 1/2 years since I began my treatment.
Also, I want to follow up on what Ian said about getting your test results. Like many other places, MSK has a patient portal through which you can view many of your test results. I'm in a routine now where I get my blood drawn in the morning and some of the key results are in the portal in time for me to discuss them with my dr when I see him in the afternoon during my monthly visits. Very timely and convenient!
Best wishes to you and your husband. Please keep us posted on how things go.
Mike
-
mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Husband newly diagnosed
Hi Patty Lou,
Thanks for posting to the Forum. I agree with you that this is a wonderful place to get information and to be part of a caring community of folks who are dealing with multiple myeloma in one way or another.
I'm sorry that your best friend has multiple myeloma and is not doing well. It's tough on everyone concerned - the patient, as well as the patient's friends and family. I think your friend is lucky to have you as a friend! The questions you ask are important, even if she thinks you are being a pain.
Because multiple myeloma is such a complex disease and because things are changing so quickly due to new research and new drugs, it is important to stay on top of these developments and ask questions. So I'm sure you are a help to her, even if she doesn't realize it.
Best wishes to your friend and to you.
Mike
Thanks for posting to the Forum. I agree with you that this is a wonderful place to get information and to be part of a caring community of folks who are dealing with multiple myeloma in one way or another.
I'm sorry that your best friend has multiple myeloma and is not doing well. It's tough on everyone concerned - the patient, as well as the patient's friends and family. I think your friend is lucky to have you as a friend! The questions you ask are important, even if she thinks you are being a pain.
Because multiple myeloma is such a complex disease and because things are changing so quickly due to new research and new drugs, it is important to stay on top of these developments and ask questions. So I'm sure you are a help to her, even if she doesn't realize it.
Best wishes to your friend and to you.
Mike
-
mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Husband newly diagnosed
Mike,
We are very familiar with MSK. My husband survived malignant melanoma Stage IV in '85 because of one of their trials. He was a walking miracle.
A couple of years ago he was there again for a mass in his pancreas. He had a biopsy done and it turned out to be a neuroendocrine tumor. Could live with it the way it is for many years. He also had his gallbladder taken out there shortly thereafter.
We have a tentative appointment at their Basking Ridge center with the multiple myeloma physician there mid August. However, our local multiple myeloma doc says it would be best to get this under control before heading to Sloan for the consult.
We are very familiar with MSK. My husband survived malignant melanoma Stage IV in '85 because of one of their trials. He was a walking miracle.
A couple of years ago he was there again for a mass in his pancreas. He had a biopsy done and it turned out to be a neuroendocrine tumor. Could live with it the way it is for many years. He also had his gallbladder taken out there shortly thereafter.
We have a tentative appointment at their Basking Ridge center with the multiple myeloma physician there mid August. However, our local multiple myeloma doc says it would be best to get this under control before heading to Sloan for the consult.
-
Halches - Name: Carol S
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 7/15
- Age at diagnosis: 73
Re: Husband newly diagnosed
Jim is not really well today at all. He is still in the hospital and this morning just after I got here he got up to go to the bathroom and when he came back to bed he started shaking, uncontrollably. This went on for a couple of hours. His pain level was a 9 at this time. About an hour after he was given some tramadol the shaking stopped. Horrible to him to experience and also for me to see without being able to do something for him.
Good news is the renal function is nearing normal and the calcium levels are going down too.
They were going to start Velcade and dex today, but I don't think that is going to happen.
Today's pain was in his lower back and he never has pain like this in that location. They are going to do an MRI later today to see what is going on. Right now he is not able to get out of bed. Just sitting up stirs up the pain. Could be he has a compression fracture.
He said to me this morning that he didn't know if all this treatment and discomfort was going to be worth it. He usually is pretty good patient so this is out of character for him.
We both are radiologic technologists, retired, and are very familiar with hospitals and disease. I've been a quick study on this multiple myeloma "curse," so at least I am able to understand how the disease and it's treatment works.
Well, tomorrow is another day and hopefully it will be a better one.
Good news is the renal function is nearing normal and the calcium levels are going down too.
They were going to start Velcade and dex today, but I don't think that is going to happen.
Today's pain was in his lower back and he never has pain like this in that location. They are going to do an MRI later today to see what is going on. Right now he is not able to get out of bed. Just sitting up stirs up the pain. Could be he has a compression fracture.
He said to me this morning that he didn't know if all this treatment and discomfort was going to be worth it. He usually is pretty good patient so this is out of character for him.
We both are radiologic technologists, retired, and are very familiar with hospitals and disease. I've been a quick study on this multiple myeloma "curse," so at least I am able to understand how the disease and it's treatment works.
Well, tomorrow is another day and hopefully it will be a better one.
-
Halches - Name: Carol S
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 7/15
- Age at diagnosis: 73
16 posts
• Page 1 of 2 • 1, 2
Return to Member Introductions / Personal Stories