Hello everyone,
I am new to this forum, actually new to being a member of a forum.
I was diagnosed on Nov. 1, 2013 with Stage I multiple myeloma. Next week I start treatment.
I am not sure if I want to begin treatment or look into alternative medicines.
My skeletal survey showed no signs of damage to my bones.
My health is excellent except for the multiple myeloma.
This is my treatment plan for 4 months:
Velcade - 2 x week SubQ for 2 weeks off 1 week.
Decadron 4mg - 10 tabs at once - 1 x week
Zometa - once a month
Anyone have any suggestions on how I should prepare for this treatment?
Any advise is greatly appreciated.
Thanks!
Forums
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nell - Name: Nell
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: November 1, 2013
- Age at diagnosis: 53
Re: Stage I Multiple Myeloma - What a shock!
Hi Nell,
I am new to the forum also. I was diagnosed with Stage I in June. I don't know all of my "numbers" like most of the people here do, but I do know that there was no bone involvement except a plasmacytoma which was treated with radiation therapy in July. The only numbers I know are that from a bone marrow biopsy, I have 20% involvement.
My doctor says that with only 1 plasmacytoma and 20%, he wants to wait to do any further treatment but will check me every 3 months. I am assuming he knows what he is talking about but after reading your post, and with your doctor proceeding with treatment at Stage I, I am now wondering if my doctor is following the right course.
Any ideas from others here on the forum would be greatly appreciated. Good luck with your treatment!
I am new to the forum also. I was diagnosed with Stage I in June. I don't know all of my "numbers" like most of the people here do, but I do know that there was no bone involvement except a plasmacytoma which was treated with radiation therapy in July. The only numbers I know are that from a bone marrow biopsy, I have 20% involvement.
My doctor says that with only 1 plasmacytoma and 20%, he wants to wait to do any further treatment but will check me every 3 months. I am assuming he knows what he is talking about but after reading your post, and with your doctor proceeding with treatment at Stage I, I am now wondering if my doctor is following the right course.
Any ideas from others here on the forum would be greatly appreciated. Good luck with your treatment!
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Cindy Lee - Name: Cindy Lee
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 64
Re: Stage I Multiple Myeloma - What a shock!
Hi Cindy,
Thanks for replying to my post!
I just looked at my Bone Marrow results and it reads:
Approximately 70-80% Clonal Plasma Cell Population identified.
50-60% Cellular marrow with decreased hematopoietic precursors.
I have no idea what this all means but no where on my report do I see 20%. So your doctor is most likely doing the right thing by montoring you every 3 months.
I will keep you posted on my jouney with my treatment.
Take care!
Thanks for replying to my post!
I just looked at my Bone Marrow results and it reads:
Approximately 70-80% Clonal Plasma Cell Population identified.
50-60% Cellular marrow with decreased hematopoietic precursors.
I have no idea what this all means but no where on my report do I see 20%. So your doctor is most likely doing the right thing by montoring you every 3 months.
I will keep you posted on my jouney with my treatment.
Take care!
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nell - Name: Nell
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: November 1, 2013
- Age at diagnosis: 53
Re: Stage I Multiple Myeloma - What a shock!
Sorry to hear about your diagnosis, Nell. Hopefully you will respond very well to treatment.
One thing that newly diagnosed patients aren't always told is that the "stage" of your disease isn't the only thing critical in understanding how well you're likely to respond to treatment. Staging really just describes how far along your disease is, physically, in your body. But just because disease is far along, which would make your stage a higher one, doesn't mean it's necessarily hard to treat.
To determine how hard it will be to treat your disease, you need to know what your "risk classification" or "risk category" is -- low risk, high risk, etc. The risk category depends somewhat on your stage, but also on other things, particularly the chromosomal abnormalities your myeloma cells have (if they have any).
This article describes the latest risk classification system that experts have developed and are recommending should be used:
https://myelomabeacon.org/news/2013/09/13/imwg-risk-stratification-multiple-myeloma/
You may be able to figure out your risk classification from your lab results. Or you can ask your doctor.
One thing that newly diagnosed patients aren't always told is that the "stage" of your disease isn't the only thing critical in understanding how well you're likely to respond to treatment. Staging really just describes how far along your disease is, physically, in your body. But just because disease is far along, which would make your stage a higher one, doesn't mean it's necessarily hard to treat.
To determine how hard it will be to treat your disease, you need to know what your "risk classification" or "risk category" is -- low risk, high risk, etc. The risk category depends somewhat on your stage, but also on other things, particularly the chromosomal abnormalities your myeloma cells have (if they have any).
This article describes the latest risk classification system that experts have developed and are recommending should be used:
https://myelomabeacon.org/news/2013/09/13/imwg-risk-stratification-multiple-myeloma/
You may be able to figure out your risk classification from your lab results. Or you can ask your doctor.
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JimNY
Re: Stage I Multiple Myeloma - What a shock!
Neil and Cindy,
A real good resource that will give you basic information about multiple myeloma, staging, treatments etc is published by the International Myeloma Foundation and it is free and is called "The Patients Handbook".
Here is the link: http://myeloma.org/pdfs/Patient_Handbook_2013.pdf
Ron
A real good resource that will give you basic information about multiple myeloma, staging, treatments etc is published by the International Myeloma Foundation and it is free and is called "The Patients Handbook".
Here is the link: http://myeloma.org/pdfs/Patient_Handbook_2013.pdf
Ron
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Stage I Multiple Myeloma - What a shock!
Thank you Jim and Ron.
Your links were very helpful. I haven't asked my doctor to give me a print out/report of the tests, so I don't know what any of my numbers are. I am not sure I would understand what they meant, so I just ask basic questions.
The last time I saw him, I asked if it was possible that I had smoldering myeloma and he said no. When I asked why, he said "Because all of the other tests tell me otherwise." He never goes into details about numbers.
That is pretty much the same answer I got from the oncology radiologist when I asked him if the radiation therapy on the plasmacytoma would, in effect, take care of the problem. He said no, because the other tests tell him lesions are there, but they are too small to see on scans at this point.
At this point, I am not going to worry about it and just see him every 3 months for the lab tests.
Your links were very helpful. I haven't asked my doctor to give me a print out/report of the tests, so I don't know what any of my numbers are. I am not sure I would understand what they meant, so I just ask basic questions.
The last time I saw him, I asked if it was possible that I had smoldering myeloma and he said no. When I asked why, he said "Because all of the other tests tell me otherwise." He never goes into details about numbers.
That is pretty much the same answer I got from the oncology radiologist when I asked him if the radiation therapy on the plasmacytoma would, in effect, take care of the problem. He said no, because the other tests tell him lesions are there, but they are too small to see on scans at this point.
At this point, I am not going to worry about it and just see him every 3 months for the lab tests.
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Cindy Lee - Name: Cindy Lee
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 64
Re: Stage I Multiple Myeloma - What a shock!
Cindy,
Learn all you can. The patients handbook is a good place to start. It will help you focus your questions. Many doctors take a different approach to patients that ask informed questions and if not then keep pressing. You are the one with cancer and you have a say in your treatment.
Ron
Learn all you can. The patients handbook is a good place to start. It will help you focus your questions. Many doctors take a different approach to patients that ask informed questions and if not then keep pressing. You are the one with cancer and you have a say in your treatment.
Ron
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Stage I Multiple Myeloma - What a shock!
Cindy,
Ron is right. Learn all you can and press your doc for details and why he thinks what he thinks regarding your condition..
And do ask for copies of your lab tests and your doctor's written diagnosis during each visit. They are your property after all.
As a start, you can learn to pick out a few key items in your lab reports such as your immunoglobulin (whichever one is in question and elevated), your M-spike (aka paraprotein level, M-protein), etc, to see how you are doing over time. You can then ask your doctor if he has any concerns regarding calcium, renal or anemia issues (the CRA in CRAB) and ask him which of the lab figures is giving him concern.
A doctor should take the time to explain why he/she thinks you are at a given stage and specifically how things are going. Also make sure that your oncologist is a myeloma specialist that sees many myeloma patients...I cant emphasize this last point enough. The treatment options and philosophies around how and when one treats this disease are rapidly evolving and you need to be working with a myeloma specialist that lives and breathes all this on a daily basis..
Ron is right. Learn all you can and press your doc for details and why he thinks what he thinks regarding your condition..
And do ask for copies of your lab tests and your doctor's written diagnosis during each visit. They are your property after all.
As a start, you can learn to pick out a few key items in your lab reports such as your immunoglobulin (whichever one is in question and elevated), your M-spike (aka paraprotein level, M-protein), etc, to see how you are doing over time. You can then ask your doctor if he has any concerns regarding calcium, renal or anemia issues (the CRA in CRAB) and ask him which of the lab figures is giving him concern.
A doctor should take the time to explain why he/she thinks you are at a given stage and specifically how things are going. Also make sure that your oncologist is a myeloma specialist that sees many myeloma patients...I cant emphasize this last point enough. The treatment options and philosophies around how and when one treats this disease are rapidly evolving and you need to be working with a myeloma specialist that lives and breathes all this on a daily basis..
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Stage I Multiple Myeloma - What a shock!
In addition to all of the other good information in the previous replies, get the booklet about what different blood tests, etc. mean from the International Myeloma Foundation. The more that each of us knows about our own disease, the treatments that are recommended and how we are responding, the better we may do in the long run.
I also can't stress enough how important it is to have a Myeloma specialist on your treatment team. If you live a distance from a Myeloma center, the specialist can be your consulting oncologist who you see occasionally. Usually the specialist will consult with your local oncologist to make recommendations for treatment. And, you can have all of your lab work and treatment done locally. If you go that route make sure that your local oncologist is open to working with someone who specializes in Myeloma. If not, find an oncologist who will.
All the best to each of you on this journey of living with myeloma,
Nancy in Phila
I also can't stress enough how important it is to have a Myeloma specialist on your treatment team. If you live a distance from a Myeloma center, the specialist can be your consulting oncologist who you see occasionally. Usually the specialist will consult with your local oncologist to make recommendations for treatment. And, you can have all of your lab work and treatment done locally. If you go that route make sure that your local oncologist is open to working with someone who specializes in Myeloma. If not, find an oncologist who will.
All the best to each of you on this journey of living with myeloma,
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Stage I Multiple Myeloma - What a shock!
Hi Nell,
EJ was 53 when he was diagnosed, and his first treatment was the same as yours. He did very well with it. He had the usual ups and downs with dex, and some neuropathy in his feet from the Velcade. The biggest problem was that he got shingles from the Velcade. You may want to talk to your doc about this, and see if they can give you a prophylactic if you have not already had singles.
Good luck!
Lyn
EJ was 53 when he was diagnosed, and his first treatment was the same as yours. He did very well with it. He had the usual ups and downs with dex, and some neuropathy in his feet from the Velcade. The biggest problem was that he got shingles from the Velcade. You may want to talk to your doc about this, and see if they can give you a prophylactic if you have not already had singles.
Good luck!
Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
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