Hi,
I'm from the UK aged 41 and thought I would join, as I've found this site to be a great help to me after reading other people's story's, info, etc.
I hope it's ok to share my story as its all been a shock to me, my wife, and my two daughters.
Sorry if I type this for too long, as this is all new to me at present.
Two months ago I was rushed into hospital due to my kidneys failing after a blood test at my local GP. After over a week of tests in hospital, I was informed I had multiple myeloma. My doctors would not give me dates regarding how long to live, etc., when I asked. They all made us feel very positive and cracked on straight away with the chemo.
Touch wood got the ok on my kidneys, had MRI on my bones, which seem to be ok. Doctors told me they think I've had multiple myeloma for about 3 years already. I can't believe I was planning life, felt well up to a month before, and didn't have a clue. My new GP told me there was a blood test I had back in 2014 which should of been picked up but wasn't.
I was in hospital for some time as I got a bad rash, side effect from a tablet which they are still not 100% certain which one it was, but all has been ok since and I am back home. Then I made the big mistake looking up Google and since then I've been knocked back with what I have read. Since reading it all, I need to get myself mentally back on track. It's not been easy, but I'm getting there slowly.
Since my return home my levels have been improving on the chemo and I think before Christmas I will be having my stem cell transplant. If it happens near Christmas, it won't be a great time, specially with having young kids. But if I'm told to have it before Christmas, then it has to be done.
I still do keep thinking, only some weeks back I was working, driving my London black taxi, planning life with my girls, and I keep thinking, wow, how life has changed, These thoughts I need to change. Reading up on this site has been a great help to us, and I hope later I can do the same for others.
Forums
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Dean UK - Name: Dean
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: April 2016
- Age at diagnosis: 41
Re: Newly diagnosed after kidneys were failing
Hi Dean:
What is your M-spike? For sure, a LOT to digest at the beginning, but over time with a bit of effort on your part, you will be the "expert" on this site. Sorry you had occasion to be here, but I hope it helps.
What is your M-spike? For sure, a LOT to digest at the beginning, but over time with a bit of effort on your part, you will be the "expert" on this site. Sorry you had occasion to be here, but I hope it helps.
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JPC - Name: JPC
Re: Newly diagnosed after kidneys were failing
Hello Dean,
I'm sorry about your multiple myeloma diagnosis.
Do not Google too much, as the information you will find is not very up to date. Recent drugs discoveries in the multiple myeloma world have been very encouraging. The life expectancies for some multiple myeloma patients are equal to or even greater than the average life expectancies of people without the disease. Some doctors are treating multiple myeloma as a chronic disease, much like diabetes. It's still incurable, unfortunately, but it's very treatable. You're young, and you may be a candidate for so-called allogeneic transplant and many other promising treatments.
For the time being, you should follow your doctor. Make sure that he/she is a myeloma specialist, not just a general hematologist / oncologist. Then, try to understand your disease, what are your risk stratifications, what are your plasma cells involvement rates, what are your drug combinations, etc. Do learn the potential side effects, as they will tell you what to expect. When you know the side effects, you will be able to face it better.
You can live normally with multiple myeloma, though some adjustments need to be made. Your kidney will be better after you start your multiple myeloma treatments. Heck, my Dad and I are in the construction industry, and 4 months after diagnosis, Dad is back on site! You can definitely play with the girls and work again.
Be positive and be happy, as those are actually what make life worth living.
Ask us any questions! We will answer as much as we can!
Cheers!
I'm sorry about your multiple myeloma diagnosis.
Do not Google too much, as the information you will find is not very up to date. Recent drugs discoveries in the multiple myeloma world have been very encouraging. The life expectancies for some multiple myeloma patients are equal to or even greater than the average life expectancies of people without the disease. Some doctors are treating multiple myeloma as a chronic disease, much like diabetes. It's still incurable, unfortunately, but it's very treatable. You're young, and you may be a candidate for so-called allogeneic transplant and many other promising treatments.
For the time being, you should follow your doctor. Make sure that he/she is a myeloma specialist, not just a general hematologist / oncologist. Then, try to understand your disease, what are your risk stratifications, what are your plasma cells involvement rates, what are your drug combinations, etc. Do learn the potential side effects, as they will tell you what to expect. When you know the side effects, you will be able to face it better.
You can live normally with multiple myeloma, though some adjustments need to be made. Your kidney will be better after you start your multiple myeloma treatments. Heck, my Dad and I are in the construction industry, and 4 months after diagnosis, Dad is back on site! You can definitely play with the girls and work again.
Be positive and be happy, as those are actually what make life worth living.
Ask us any questions! We will answer as much as we can!
Cheers!
Re: Newly diagnosed after kidneys were failing
Thanks for the replies.
JPC, you can tell I'm new as I don't know what my M-spike is or ever heard the word yet from my doctor. May be in the UK it's a different approach, or just my lack of understanding. All I have been told so far was that my paraprotein, which the doctors seem to say a lot, was 53, and it went down to 9 in 2 treatments, so I hope it keeps going down more as I've done another treatment, but time will tell. Is M-spike like a paraprotein level?
Tpt, thanks for the positive feedback. At the moment, the doctors have been great, but they are just not myeloma specialists, so this is a great tip. This is something I need to look into. I don't know if it's a different approach in the UK, but all this info is great help. Will look up myeloma specialists on google this evening for the UK. Regarding a positive story, I had to go to the hospital for a routine blood test today and got talking to a man who was sitting next to me. He had his first transplant 15 years ago and still is in remission. He just has a blood test once a year now. I couldn't believe it at first .
Thanks you both for the advice.
JPC, you can tell I'm new as I don't know what my M-spike is or ever heard the word yet from my doctor. May be in the UK it's a different approach, or just my lack of understanding. All I have been told so far was that my paraprotein, which the doctors seem to say a lot, was 53, and it went down to 9 in 2 treatments, so I hope it keeps going down more as I've done another treatment, but time will tell. Is M-spike like a paraprotein level?
Tpt, thanks for the positive feedback. At the moment, the doctors have been great, but they are just not myeloma specialists, so this is a great tip. This is something I need to look into. I don't know if it's a different approach in the UK, but all this info is great help. Will look up myeloma specialists on google this evening for the UK. Regarding a positive story, I had to go to the hospital for a routine blood test today and got talking to a man who was sitting next to me. He had his first transplant 15 years ago and still is in remission. He just has a blood test once a year now. I couldn't believe it at first .
Thanks you both for the advice.
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Dean UK - Name: Dean
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: April 2016
- Age at diagnosis: 41
Re: Newly diagnosed after kidneys were failing
Welcome to the forum, Dean.
Yes, "M-spike" is the same as "paraprotein". "M-spike" is the term used in the United States, and I believe it also is often used in Canada. In most other English-speaking countries, you will instead see references to "paraprotein", "M-protein", or "monoclonal protein".
There is also a difference between countries in units. The M-spike is typically measured in g/dl in the United States, and g/l in other countries. There is a factor of 10 difference between the two. Results in g/l are 10 times greater than results in g/dl.
From what you've written, it appears your M-spike (paraprotein) originally was 53 g/l (5.3 g/dl), and it has dropped to 9 g/l (0.9 g/dl) in two treatments. So you've responded very well to treatment so far.
Good luck!
Yes, "M-spike" is the same as "paraprotein". "M-spike" is the term used in the United States, and I believe it also is often used in Canada. In most other English-speaking countries, you will instead see references to "paraprotein", "M-protein", or "monoclonal protein".
There is also a difference between countries in units. The M-spike is typically measured in g/dl in the United States, and g/l in other countries. There is a factor of 10 difference between the two. Results in g/l are 10 times greater than results in g/dl.
From what you've written, it appears your M-spike (paraprotein) originally was 53 g/l (5.3 g/dl), and it has dropped to 9 g/l (0.9 g/dl) in two treatments. So you've responded very well to treatment so far.
Good luck!
Re: Newly diagnosed after kidneys were failing
Thanks for the info Terry. It's all been a great help
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Dean UK - Name: Dean
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: April 2016
- Age at diagnosis: 41
Re: Newly diagnosed after kidneys were failing
Hello again, Dean.
M-spike is a label for the term "monoclonal protein", which as Terry mentioned also is termed paraprotein. It also looks like a "spike" when the graph of the electrophoresis test result is reviewed.
It will take a little bit of time, but learning some of the vocabulary I think is important in achieving a good understanding of what the doctors would be trying to tell you. If you can get a better than 90% reduction in M-spike on initial induction going in to the stem cell transplant, that is generally a good sign. You are over 80% reduction, part way through your induction, so that is good so far.
There is a thing called the FISH test that measures your "risk status" according to genetic testing. Did you get it? Very generally, best case results of the FISH is a good sign, but unfavorable abnormalities might indicate the need for more treatment. Very generally, almost 50% of patients have some type of abnormality. This also relates to the point of having a myeloma specialist, with some feel of how to deal with the various possible cytogenetic abnormalities.
Good luck to you again.
M-spike is a label for the term "monoclonal protein", which as Terry mentioned also is termed paraprotein. It also looks like a "spike" when the graph of the electrophoresis test result is reviewed.
It will take a little bit of time, but learning some of the vocabulary I think is important in achieving a good understanding of what the doctors would be trying to tell you. If you can get a better than 90% reduction in M-spike on initial induction going in to the stem cell transplant, that is generally a good sign. You are over 80% reduction, part way through your induction, so that is good so far.
There is a thing called the FISH test that measures your "risk status" according to genetic testing. Did you get it? Very generally, best case results of the FISH is a good sign, but unfavorable abnormalities might indicate the need for more treatment. Very generally, almost 50% of patients have some type of abnormality. This also relates to the point of having a myeloma specialist, with some feel of how to deal with the various possible cytogenetic abnormalities.
Good luck to you again.
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JPC - Name: JPC
Re: Newly diagnosed after kidneys were failing
Thanks, JPC, for the info. No I didn't know about a FISH test, so will ask. So much to find about. All this info is great. Thanks again.
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Dean UK - Name: Dean
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: April 2016
- Age at diagnosis: 41
Re: Newly diagnosed after kidneys were failing
Hi Dean,
The standard FISH test (for what it's worth, comes from fluorescent in situ hybridization) is on the bone marrow biopsy sample. Did you have a bone marrow biopsy?
If they did the bone marrow biopsy, but not the FISH test, then I think it is possible to go back and get it done on the sample that might remain. It may not be valid if done after treatment. It is done on the "bad" myeloma cells, and treatment reduces them to the point that there is not enough sample to do the test.
Good luck.
The standard FISH test (for what it's worth, comes from fluorescent in situ hybridization) is on the bone marrow biopsy sample. Did you have a bone marrow biopsy?
If they did the bone marrow biopsy, but not the FISH test, then I think it is possible to go back and get it done on the sample that might remain. It may not be valid if done after treatment. It is done on the "bad" myeloma cells, and treatment reduces them to the point that there is not enough sample to do the test.
Good luck.
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JPC - Name: JPC
Re: Newly diagnosed after kidneys were failing
Hi JPC,
Thanks for the info again. Yes, I did have a bone marrow biopsy, but nothing was ever mentioned, so I need to ask about all this when I'm due to see the doctor next. I know they have booked me for another biopsy at the end of treatment, but as you said, that would not really show.
How is your partner getting on? I'm not sure if this is a question more for a doctor, but do patients need to always get their paraprotein down to 0 or a controlled level of 5, 10, or more before it causes problems?
Thanks again.
Thanks for the info again. Yes, I did have a bone marrow biopsy, but nothing was ever mentioned, so I need to ask about all this when I'm due to see the doctor next. I know they have booked me for another biopsy at the end of treatment, but as you said, that would not really show.
How is your partner getting on? I'm not sure if this is a question more for a doctor, but do patients need to always get their paraprotein down to 0 or a controlled level of 5, 10, or more before it causes problems?
Thanks again.
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Dean UK - Name: Dean
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: April 2016
- Age at diagnosis: 41
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