As I sit in the clinic bed getting the last of my third dose of carfilzomib (Kyprolis) infused, I decided it was time to say hello. A few months ago I wasn't in the right frame of mind to do that, as I read your posts with mixtures of fear and hope.
I'm 53 and was diagnosed in April 2015 following a routine physical and blood test. You know it's not good when your doctor calls and says he saw something in the blood test and he is referring you to a hematologist. I went through all the normal tests and I'm lucky to live in Seattle and have access to some of the nation's leading multiple myeloma specialists.
Later in April I learned I have the del(17p) chromosome abnormality. When the oncologist shared the survival statistics for multiple myeloma and then for del(17p), I was in shock. For many months I was a basket case. With time, supportive doctors, and family, I'm in a much better place and know that I'm a statistic of ONE. While I'm not a science denier (I'm pretty sure global warming is real), I can intellectually grasp the amazing and rapid developments happening now in multiple myeloma. I hang my hat on that. I will win.
I was lucky to have no real symptoms from the multiple myeloma at diagnosis, but my doctor wants to be aggressive given my other factors. I started Revlimid, Velcade, and dexamethasone (RVD) in November. I saw an initial drop in my M-spike, but not as deep as they wanted. Then it crept up after cycle 3. Technically not "refractory", but we made the change to carfilzomib, Pomalyst, and dexamethasone. We're hoping two cycles will get enough response to get a stem cell transplant (SCT), maybe in April.
Thank you all for your posts. I've learned all of our diseases are different. We will all handle the treatments and side effects differently, but we all have so much in common too. Now that my head is in a good place, I hope to be more active here. Seeking help from those further on their journey, and offering information and hope to those that join after me.
Forums
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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: Ready to say hello
Hi Mark,
Very sorry for the reason you are here, but welcome! I, too, was recently diagnosed with multiple myeloma, and I have learned a great deal about this disease and the compassion of others in my few short weeks on this site! The generosity here of our fellow multiple myeloma sufferers is very heartwarming!
Wishing you happiness and a return to good health very soon. All the best on this journey.
Karen
Very sorry for the reason you are here, but welcome! I, too, was recently diagnosed with multiple myeloma, and I have learned a great deal about this disease and the compassion of others in my few short weeks on this site! The generosity here of our fellow multiple myeloma sufferers is very heartwarming!
Wishing you happiness and a return to good health very soon. All the best on this journey.
Karen
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KarenaD - Name: Karen
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: November 4, 2015
- Age at diagnosis: 54
Re: Ready to say hello
Mark,
I too was a basket case at first. I remember the first 6 months after diagnosis as a very dark, bleak, confusing time. I spent those months curled up in my bed, crying under the covers. I got up to eat, shower (maybe) and go to medical appointments. Then I'd go right back to bed. But then, gradually, I realized I was bored. So I got up.
I too found it difficult to grasp the amazing advancements taking place in myeloma research. I knew I had ZERO perspective, so I couldn't tell if my belief in progress was based on reality or hope. Then I read "The Emperor of All Maladies: A Biography of Cancer". Highly recommended! I can see why it won a Pulitzer in 2010. Things are undoubtedly getting better! There is real progress. Yes, indeed! Velcade is even mentioned in the book.
Still, it's a tough diagnosis to get. The chronicity is what gets me. Since my diagnosis, I've had friends get diagnosed with cancer, and then decline and die. I'm still here! I've also had friends get diagnosed with cancer, have surgery, radiation, chemotherapy, and now they're FINISHED with treatment. They are moving on, and trying to make cancer part of their history, rather than their present. I'm still here getting treatment. It reminds me of the "perpetual present", from Paul Kalanithi's book "When Breath Becomes Air". It's the story of a 35 year old neurosurgery resident who is diagnosed with metastatic lung cancer. He was a mesmerizing writer.
Anyway.
Deep thoughts by Tracy Jalbuena.
Good luck.
I too was a basket case at first. I remember the first 6 months after diagnosis as a very dark, bleak, confusing time. I spent those months curled up in my bed, crying under the covers. I got up to eat, shower (maybe) and go to medical appointments. Then I'd go right back to bed. But then, gradually, I realized I was bored. So I got up.
I too found it difficult to grasp the amazing advancements taking place in myeloma research. I knew I had ZERO perspective, so I couldn't tell if my belief in progress was based on reality or hope. Then I read "The Emperor of All Maladies: A Biography of Cancer". Highly recommended! I can see why it won a Pulitzer in 2010. Things are undoubtedly getting better! There is real progress. Yes, indeed! Velcade is even mentioned in the book.
Still, it's a tough diagnosis to get. The chronicity is what gets me. Since my diagnosis, I've had friends get diagnosed with cancer, and then decline and die. I'm still here! I've also had friends get diagnosed with cancer, have surgery, radiation, chemotherapy, and now they're FINISHED with treatment. They are moving on, and trying to make cancer part of their history, rather than their present. I'm still here getting treatment. It reminds me of the "perpetual present", from Paul Kalanithi's book "When Breath Becomes Air". It's the story of a 35 year old neurosurgery resident who is diagnosed with metastatic lung cancer. He was a mesmerizing writer.
Anyway.
Deep thoughts by Tracy Jalbuena.
Good luck.
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Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
Re: Ready to say hello
Hi Mark,
Here's another welcome to the Forum. Sorry you're here, though.
I was impressed by your post. It definitely sounds like you are in a "good place" mentally now. I think attitude makes a big difference in how we do with multiple myeloma. Some of that difference may actually be in how effective the treatment is, but most of it is in how we perceive things to be. Which is just as important.
A strange realization struck me as I was driving a few weeks ago: I am lucky because I think I am lucky.
By the way, I second Tracy's recommendation of "The Emperor of All Maladies." It's one of the best books I've ever read. Now I need to also check out "When Breath Becomes Air."
Best wishes to you. I hope the current treatment get your myeloma numbers down so that you can proceed with the transplant. Please keep us posted.
Mike
Here's another welcome to the Forum. Sorry you're here, though.
I was impressed by your post. It definitely sounds like you are in a "good place" mentally now. I think attitude makes a big difference in how we do with multiple myeloma. Some of that difference may actually be in how effective the treatment is, but most of it is in how we perceive things to be. Which is just as important.
A strange realization struck me as I was driving a few weeks ago: I am lucky because I think I am lucky.
By the way, I second Tracy's recommendation of "The Emperor of All Maladies." It's one of the best books I've ever read. Now I need to also check out "When Breath Becomes Air."
Best wishes to you. I hope the current treatment get your myeloma numbers down so that you can proceed with the transplant. Please keep us posted.
Mike
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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: Ready to say hello
Hi Mark,
Welcome to the forum. Glad that your GP was sharp enough to pick up on your situation and that you find yourself in Seattle under the circumstances.
Welcome to the forum. Glad that your GP was sharp enough to pick up on your situation and that you find yourself in Seattle under the circumstances.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Ready to say hello
Thank you all for the warm welcome. One reason to start participating is my judgement that this is a supportive group of people.
One hesitancy I've always had about joining any kind of support group (and I consider this forum a support group) is making connections with people and wondering how I might handle it if one of those friends takes a turn for the worst and leaves us.
I think I've accepted the idea we all handle the progression differently and another person's bad side effect may not be mine, but I don't know how I would deal with the extreme result we all may realistically be facing.
I'm not trying to be a downer, but these are the thoughts I balance in trying to decide how best to deal with this new reality.
One hesitancy I've always had about joining any kind of support group (and I consider this forum a support group) is making connections with people and wondering how I might handle it if one of those friends takes a turn for the worst and leaves us.
I think I've accepted the idea we all handle the progression differently and another person's bad side effect may not be mine, but I don't know how I would deal with the extreme result we all may realistically be facing.
I'm not trying to be a downer, but these are the thoughts I balance in trying to decide how best to deal with this new reality.
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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: Ready to say hello
Mark
Welcome to the forum and that you feel that you are now in a place where you can open up. It took me quite a while to do so, but I am so happy that I did. I've met some wonderful people through the forum and through the support group that I attend in person. I've learned so much from the others who I've met and have been able to pass what I know and feel on to those who have been diagnosed after me.
I've found that losing my virtual friends and my physical friends to myeloma is especially hard because it is so personal. The last 2 years I have lost some very good friends in my support group to this disease and it is always a time that makes me take a deep breath and realize how fortunate I have been so far. I think the hardest part for me is watching a person decline and know that they have tried everything that there is to treat myeloma. It never gets any easier. But, I gather with my other myeloma friends to say goodbye and to bolster one another up to meet each of our next challenges.
All the best to you with your latest treatment regimen,
Nancy in Phila
Welcome to the forum and that you feel that you are now in a place where you can open up. It took me quite a while to do so, but I am so happy that I did. I've met some wonderful people through the forum and through the support group that I attend in person. I've learned so much from the others who I've met and have been able to pass what I know and feel on to those who have been diagnosed after me.
I've found that losing my virtual friends and my physical friends to myeloma is especially hard because it is so personal. The last 2 years I have lost some very good friends in my support group to this disease and it is always a time that makes me take a deep breath and realize how fortunate I have been so far. I think the hardest part for me is watching a person decline and know that they have tried everything that there is to treat myeloma. It never gets any easier. But, I gather with my other myeloma friends to say goodbye and to bolster one another up to meet each of our next challenges.
All the best to you with your latest treatment regimen,
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: Ready to say hello
Well said, Nancy.
I started to write something longer here to try to deal with Mark's very valid point. But then I realized that you said things much better than I could.
So I'll just say, yes, it is tough, extremely tough. But, for me, the support that I get from this virtual community and in-person support group (which by the way is the same one Nancy attends) does make things a little easier.
We all just are doing what we need to do. And what one person needs to do is not necessarily the same as the next person.
Mike
I started to write something longer here to try to deal with Mark's very valid point. But then I realized that you said things much better than I could.
So I'll just say, yes, it is tough, extremely tough. But, for me, the support that I get from this virtual community and in-person support group (which by the way is the same one Nancy attends) does make things a little easier.
We all just are doing what we need to do. And what one person needs to do is not necessarily the same as the next person.
Mike
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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: Ready to say hello
Thank you Nancy and Mike. I guess my introductory post took a bit of an unexpected turn. I appreciate your words.
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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: Ready to say hello
Hello Mark,
Very sorry to hear about your diagnosis. My wife has been monitored annually since 2002 when they discovered she had MGUS. Last spring they noticed the level had increased (she had no symptoms) and after the bone marrow test it showed she had 60% plasma cells and her cytogenetics showed del 17p.
A huge shock and on/off difficulty dealing with this for her and our family. She isn't interested in any support groups, reading articles, or hearing me discuss it with others, so I'm tasked with all the research, questions, etc. Every person has their way of dealing with it, so it's fortunate one of us can deal with that. It remains an emotional roller coaster.
She went through 4 months of cyclophosphamide, Velcade, and dexamethasone (CyBorD) induction therapy followed by a tandem autologous stem cell transplant (ASCT) in November and the 2nd now. The main reason for this was the del 17p. The hospitals involved both have psychologists / psychiatrists on staff dealing specifically with cancer patients. Their understanding of the disease helped her a lot in those sessions. So far her numbers have reacted very well to treatment.
There have been so many advancements in multiple myeloma research and treatment the last 10 years, including 4 drugs approved in the US last year, that I ignore the existing statistics because of these advancements.
Wish you well on this difficult journey!
Very sorry to hear about your diagnosis. My wife has been monitored annually since 2002 when they discovered she had MGUS. Last spring they noticed the level had increased (she had no symptoms) and after the bone marrow test it showed she had 60% plasma cells and her cytogenetics showed del 17p.
A huge shock and on/off difficulty dealing with this for her and our family. She isn't interested in any support groups, reading articles, or hearing me discuss it with others, so I'm tasked with all the research, questions, etc. Every person has their way of dealing with it, so it's fortunate one of us can deal with that. It remains an emotional roller coaster.
She went through 4 months of cyclophosphamide, Velcade, and dexamethasone (CyBorD) induction therapy followed by a tandem autologous stem cell transplant (ASCT) in November and the 2nd now. The main reason for this was the del 17p. The hospitals involved both have psychologists / psychiatrists on staff dealing specifically with cancer patients. Their understanding of the disease helped her a lot in those sessions. So far her numbers have reacted very well to treatment.
There have been so many advancements in multiple myeloma research and treatment the last 10 years, including 4 drugs approved in the US last year, that I ignore the existing statistics because of these advancements.
Wish you well on this difficult journey!
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SK1 - Name: SK
- Who do you know with myeloma?: Spouse
- When were you/they diagnosed?: June 2015
- Age at diagnosis: 62
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