I am a 65 year old retired school teacher married to my soul mate for 45 years with 2 grown sons and 4 wonderful grandchildren.
I was diagnosed with multiple myeloma in October 2013 and started Velcade in December of 2013. I also see a naturopath and take a lot of supplements. I refuse to even consider a stem cell transplant and am very reluctant to add any more chemo.
My numbers recently spiked and the first of the year my oncologist wants to add Cytoxan [cyclophosphamide] to the mix, but the side effects I have read about scare me and I am reluctant to add it to the Velcade and prednisone.
I am a Christian and not afraid to die and am considering just letting it take its course, but my husband and my sons are having a fit. Guess I will keep on praying before making my decision.
I will be getting my blood work repeated January 6 and will see my oncologist on January 13. I had had a serious sinus infection with bad cough and was on antibiotics when going through the blood work. My oncologist said the infection could have spiked the myeloma numbers, so I am praying the numbers go back down with the next test.
sue in ohio
Forums
Re: Hello! Just found this forum
Sue,
Alkylating drugs like Cytoxan have proven to be quite effective when used with other drugs like Velcade and prednisone.
The drug combo your doc is considering is commonly known as CyBorP. It's very similar to CyBorD (which just substitutes dex for prednisone; note that prednisone is often used instead of dex with older patients). Many folks on this forum use CyBorD.
Just about any drug you consider is going to have a nasty list of side effects (including Velcade, which you currently take). BUT whether you personally will experience any of these side effects is an unknown. Many folks do pretty well on CyBorD, side-effect-wise, with their biggest complaint being about the steroid portion of the treatment ... but you already know how you will react to the steroid portion, since you are already on prednisone.
If you type "CyBorD" or "VCD" (a different acronym for the same combination therapy) into the search box at the top of the forum, you will find a lot of discussions on side effects and people's experiences.
Given you are already on Velcade, I'm not sure that I would personally choose between "letting the disease take its course" and taking Cytoxan. But I would discuss other options (there are many) with other docs if Cytoxan scares you ... and also do a bit more research on CyBorP / CyBorD .
Alkylating drugs like Cytoxan have proven to be quite effective when used with other drugs like Velcade and prednisone.
The drug combo your doc is considering is commonly known as CyBorP. It's very similar to CyBorD (which just substitutes dex for prednisone; note that prednisone is often used instead of dex with older patients). Many folks on this forum use CyBorD.
Just about any drug you consider is going to have a nasty list of side effects (including Velcade, which you currently take). BUT whether you personally will experience any of these side effects is an unknown. Many folks do pretty well on CyBorD, side-effect-wise, with their biggest complaint being about the steroid portion of the treatment ... but you already know how you will react to the steroid portion, since you are already on prednisone.
If you type "CyBorD" or "VCD" (a different acronym for the same combination therapy) into the search box at the top of the forum, you will find a lot of discussions on side effects and people's experiences.
Given you are already on Velcade, I'm not sure that I would personally choose between "letting the disease take its course" and taking Cytoxan. But I would discuss other options (there are many) with other docs if Cytoxan scares you ... and also do a bit more research on CyBorP / CyBorD .
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Hello! Just found this forum
Hello Sue from a fellow Buckeye!
Let me give you another perspective. I am Christian as well. My wife and I have a music ministry. We are both cancer patients along with our son-in-law. I have multiple myeloma, she has lymphoma and our son-in-law has Hodgkin's. They are BOTH now cancer free because of the treatments! 2 out of 3 ain't bad eh??
We have all three been on a variety of different chemos / drugs during the course of our diseases. Yep we all had side effects from them. From very mild to wishing it would stop. It hasn't been a picnic. On the other hand, God has granted me more time to spend with my 5 grand children, my wife and my many friends. We even still sing in various churches from time to time.
We have all three had stem cell transplants. I had mine in 2012 at The James. My wife had hers back in July there as well. Our son-in-law was released from the hospital in Little Rock, Arkansas after having his the same day my wife was admitted.
Yep, we had side-effects. Yep, it was tough at times. I had issues with the dosage of Velcade so it finally had to be reduced. From very mild to wishing it would stop. It hasn't been a picnic. On the other hand, God has granted me more time to spend with my 5 grand children, my wife and my many friends. We even still sing in various churches from time to time.
However, no one knows for sure how you will react to any chemo / drug they might give you. You just don't know. However, I CAN tell you this. IT WAS WORTH EVERY MINUTE OF DEALING WITH SIDE EFFECTS TO BE WHERE I AM NOW!!
I am not really afraid to die either. I AM afraid of how it will happen. I am much more afraid of the multiple myeloma than I am the treatments.
For me, it's about making the BEST use of the time God gives me. God gave me life. It is my DUTY and gift to Him how I use that life. He has called many to be doctors, nurses, scientists, researchers and the like to help folks like you and I. I feel, as a Christian, I have an obligation to him to do everything I can and use every resource he gives me.
Wishing you all the best!!
Scott
Let me give you another perspective. I am Christian as well. My wife and I have a music ministry. We are both cancer patients along with our son-in-law. I have multiple myeloma, she has lymphoma and our son-in-law has Hodgkin's. They are BOTH now cancer free because of the treatments! 2 out of 3 ain't bad eh??
We have all three been on a variety of different chemos / drugs during the course of our diseases. Yep we all had side effects from them. From very mild to wishing it would stop. It hasn't been a picnic. On the other hand, God has granted me more time to spend with my 5 grand children, my wife and my many friends. We even still sing in various churches from time to time.
We have all three had stem cell transplants. I had mine in 2012 at The James. My wife had hers back in July there as well. Our son-in-law was released from the hospital in Little Rock, Arkansas after having his the same day my wife was admitted.
Yep, we had side-effects. Yep, it was tough at times. I had issues with the dosage of Velcade so it finally had to be reduced. From very mild to wishing it would stop. It hasn't been a picnic. On the other hand, God has granted me more time to spend with my 5 grand children, my wife and my many friends. We even still sing in various churches from time to time.
However, no one knows for sure how you will react to any chemo / drug they might give you. You just don't know. However, I CAN tell you this. IT WAS WORTH EVERY MINUTE OF DEALING WITH SIDE EFFECTS TO BE WHERE I AM NOW!!
I am not really afraid to die either. I AM afraid of how it will happen. I am much more afraid of the multiple myeloma than I am the treatments.
For me, it's about making the BEST use of the time God gives me. God gave me life. It is my DUTY and gift to Him how I use that life. He has called many to be doctors, nurses, scientists, researchers and the like to help folks like you and I. I feel, as a Christian, I have an obligation to him to do everything I can and use every resource he gives me.
Wishing you all the best!!
Scott
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Guitarnut - Name: Scott Hansgen
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Sept 2011
- Age at diagnosis: 47
Re: Hello! Just found this forum
Sue
I had wonderful results from weekly CyBorD in just a few months.
Here is what I wrote in this forum about side effects - "The day after chemo, the dex made me very energetic, gave me a night of insomnia. Something made that diarrhea day, so I got a lot done but only near home! When that wore off, I noticed other things: swollen ankles, trouble reading fine print, and shortness of breath. This was all pretty mild. My blood counts remained at the low end of normal, and it was safe for me to live life normally: shopping, seeing friends and family, going to restaurants, etc. ...I realize I was lucky."
Probably those effects were from Velcade and dex, meaning the Cytoxan did me no harm and lots of good during the many weeks that I took it.
Why is it you would not even consider a stem cell transplant? I am grateful to have struck a second blow against my multiple myeloma thanks to the availability of transplants.
Dana
I had wonderful results from weekly CyBorD in just a few months.
Here is what I wrote in this forum about side effects - "The day after chemo, the dex made me very energetic, gave me a night of insomnia. Something made that diarrhea day, so I got a lot done but only near home! When that wore off, I noticed other things: swollen ankles, trouble reading fine print, and shortness of breath. This was all pretty mild. My blood counts remained at the low end of normal, and it was safe for me to live life normally: shopping, seeing friends and family, going to restaurants, etc. ...I realize I was lucky."
Probably those effects were from Velcade and dex, meaning the Cytoxan did me no harm and lots of good during the many weeks that I took it.
Why is it you would not even consider a stem cell transplant? I am grateful to have struck a second blow against my multiple myeloma thanks to the availability of transplants.
Dana
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Mister Dana - Name: Mister Dana
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: December 2013
- Age at diagnosis: 66
Re: Hello! Just found this forum
Another drug that could be added to the Velcade is Revlimid. VRd is a very common combination of drugs for myeloma. I've been taking Revlimid for a couple of years. My oncologist has said that, if the Revlimid stops working as well, that he would add Velcade to the mix.
Ask your oncologist about why he is recommending Cytoxan rather than Revlimid or Pomalyst, the newest generation of Revlimid.
Nancy in Phila
Ask your oncologist about why he is recommending Cytoxan rather than Revlimid or Pomalyst, the newest generation of Revlimid.
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: Hello! Just found this forum
I had already told my oncologist no to Revlimid as an older man at my church died of myeloma last year and the tumors that filled his body may have been caused by the Revlimid. My doctor said the Cytoxan has less toxic side effects than the Revlimid.
I have suffered with fibromyalgia for 20 years and in 1998 had a spinal fusion followed by severe arthritis in the low back and more degeneration below my former fusion. I also have IBS (irritable bowel syndrome) and asthma plus periodically suffer from depression and anxiety attacks. I have not been able to take any of the meds they tried me on as the side effects were so bad. Things that do not bother other people can be excruciatingly painful to me due to the fibro. I take no pain meds other than Aleve [naproxen] as they also make me sick, plus I don't want to put those drugs in my body.
The stem cell transplant process I know can be brutal and, with my problems with meds and pain, I could not tolerate it. I have a wonderful Christian psychologist I got to when the anxiety gets too bad and a fantastic Bible study group whose members have been my rock for 11 years. Our dear pastor has also been a godsend to me and I do a lot of praying.
Thank you for all of the kind responses.
sue in ohio
I have suffered with fibromyalgia for 20 years and in 1998 had a spinal fusion followed by severe arthritis in the low back and more degeneration below my former fusion. I also have IBS (irritable bowel syndrome) and asthma plus periodically suffer from depression and anxiety attacks. I have not been able to take any of the meds they tried me on as the side effects were so bad. Things that do not bother other people can be excruciatingly painful to me due to the fibro. I take no pain meds other than Aleve [naproxen] as they also make me sick, plus I don't want to put those drugs in my body.
The stem cell transplant process I know can be brutal and, with my problems with meds and pain, I could not tolerate it. I have a wonderful Christian psychologist I got to when the anxiety gets too bad and a fantastic Bible study group whose members have been my rock for 11 years. Our dear pastor has also been a godsend to me and I do a lot of praying.
Thank you for all of the kind responses.
sue in ohio
Re: Hello! Just found this forum
Hello Sue,
First of all, I am sorry to hear about your multiple myeloma numbers increasing. When your current treatment stops working, it is a scary time. (Of course, lots about myeloma is scary, isn't it?) You need to make some important decisions shortly after the first of the year. For this reason, I am going to be blunt with you here.
I have noticed several things in your posts that concern me. You're 65 years old, which is not that old for someone with myeloma. There are many good therapies now, so it is way too early for you to think for even one second about "letting the disease take its course." The course it takes if untreated is not pretty.
Also, you've ruled out two of the most common and most successful treatments right off the bat - autologous stem cell transplants, and Revlimid. In the case of Revlimid, you're basing that decision on hearsay. The person at your church might have had the tumors in spite of Revlimid, not because of it. And, although you have had other ailments, which I'm sorry to hear about, you are young enough to be a good candidate for a stem cell transplant.
So ... I urge you to do two things for yourself and for your family.
First, see a myeloma specialist, if you're not seeing one already, not simply a general oncologist or hematologist / oncologist. At least for a second opinion. As you know, myeloma is a complex disease, so you should be treated by someone who sees many myeloma patients, not just an occasional myeloma patient. And someone who is up on the latest research findings, because there are new results almost daily that can affect what course of treatment you should have. Folks on this forum can give you advice about specialists in your area of Ohio. This link provides a list of myeloma treatment centers in Ohio:
https://myelomabeacon.org/resources/treatment-centers/#Ohio
Second, keep your mind open to all the treatment possibilities that the myeloma specialist will discuss with you. Lots of different factors need to be weighed in making treatment decisions. And your specialist can work with you to make intelligent decisions.
Best wishes to you for success in your next phase of treatment, whatever it turns out to be. Please keep us posted on how things go.
Mike
First of all, I am sorry to hear about your multiple myeloma numbers increasing. When your current treatment stops working, it is a scary time. (Of course, lots about myeloma is scary, isn't it?) You need to make some important decisions shortly after the first of the year. For this reason, I am going to be blunt with you here.
I have noticed several things in your posts that concern me. You're 65 years old, which is not that old for someone with myeloma. There are many good therapies now, so it is way too early for you to think for even one second about "letting the disease take its course." The course it takes if untreated is not pretty.
Also, you've ruled out two of the most common and most successful treatments right off the bat - autologous stem cell transplants, and Revlimid. In the case of Revlimid, you're basing that decision on hearsay. The person at your church might have had the tumors in spite of Revlimid, not because of it. And, although you have had other ailments, which I'm sorry to hear about, you are young enough to be a good candidate for a stem cell transplant.
So ... I urge you to do two things for yourself and for your family.
First, see a myeloma specialist, if you're not seeing one already, not simply a general oncologist or hematologist / oncologist. At least for a second opinion. As you know, myeloma is a complex disease, so you should be treated by someone who sees many myeloma patients, not just an occasional myeloma patient. And someone who is up on the latest research findings, because there are new results almost daily that can affect what course of treatment you should have. Folks on this forum can give you advice about specialists in your area of Ohio. This link provides a list of myeloma treatment centers in Ohio:
https://myelomabeacon.org/resources/treatment-centers/#Ohio
Second, keep your mind open to all the treatment possibilities that the myeloma specialist will discuss with you. Lots of different factors need to be weighed in making treatment decisions. And your specialist can work with you to make intelligent decisions.
Best wishes to you for success in your next phase of treatment, whatever it turns out to be. Please keep us posted on how things go.
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: Hello! Just found this forum
Hi Sue,
Mike has given you some really honest and heartfelt advice. Please take some time to consider what he wrote. I'm sure I'm not the only one who read what he wrote and thought "Thank you, Mike, for saying exactly what I wanted to say."
Also, read this posting from Kate. She was diagnosed two years ago. At the time, Kate felt very similar to you. In fact, she was thinking about throwing in the towel right from the start, as you'll see from what she posted here:
"Palliative treatment from the onset?", forum discussion started Jan 27, 2013.
But people here told her exactly the same sort of things Mike just wrote you, and, as you'll see from her most recent posting, she is really glad she listened to the advice she was given.
Thanks for introducing yourself, and best of luck as you continue with your myeloma journey.
Mike has given you some really honest and heartfelt advice. Please take some time to consider what he wrote. I'm sure I'm not the only one who read what he wrote and thought "Thank you, Mike, for saying exactly what I wanted to say."
Also, read this posting from Kate. She was diagnosed two years ago. At the time, Kate felt very similar to you. In fact, she was thinking about throwing in the towel right from the start, as you'll see from what she posted here:
"Palliative treatment from the onset?", forum discussion started Jan 27, 2013.
But people here told her exactly the same sort of things Mike just wrote you, and, as you'll see from her most recent posting, she is really glad she listened to the advice she was given.
Thanks for introducing yourself, and best of luck as you continue with your myeloma journey.
Re: Hello! Just found this forum
Sue,
I was thinking a bit about your post while out on a long hike this morning. I'm really glad Mike and Cheryl posted their thoughts since they nicely summarize exactly what I was thinking.
I was thinking a bit about your post while out on a long hike this morning. I'm really glad Mike and Cheryl posted their thoughts since they nicely summarize exactly what I was thinking.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Hello! Just found this forum
Hi Sue in Ohio,
I also agree with Mike that you should probably not just rule out taking any Revlimid. I am also in my sixties too, and am taking it right now for a relapse. Although it does have some side effects that I could do without, it seems to be working well on the myeloma, and I am pretty much able to function quite well. My dear family looks out for me if I am tired, though, or not feeling well.
Since I was diagnosed over five years ago, and at that time the 'novel agents' of Velcade and Revlimid were just newly introduced here in Alberta, I did know of people who had myeloma but did not survive very long, who did not have access to these new drugs. The stem cell transplant I had also helped me with my health to date, and not everyone I heard of had that either, for whatever reason, although they were available to patients here at the time.
The stories I heard about the patients who came ahead of me scared me so much that I was very interested in trying the new treatments. One friend of mine whose husband died from myeloma is still surprised to see me doing well, which is a bit disconcerting to me at times.
As an aside, I met a couple from Ohio when we were on holiday last spring in Quebec City. I asked them why Ohio is called the 'buckeye state'. They told me that it was sort of a fruit from a tree that falls like an acorn! There are people here on the Beacon who refer to themselves as 'Buckeyes' and I didn't know what that meant.
I also agree with Mike that you should probably not just rule out taking any Revlimid. I am also in my sixties too, and am taking it right now for a relapse. Although it does have some side effects that I could do without, it seems to be working well on the myeloma, and I am pretty much able to function quite well. My dear family looks out for me if I am tired, though, or not feeling well.
Since I was diagnosed over five years ago, and at that time the 'novel agents' of Velcade and Revlimid were just newly introduced here in Alberta, I did know of people who had myeloma but did not survive very long, who did not have access to these new drugs. The stem cell transplant I had also helped me with my health to date, and not everyone I heard of had that either, for whatever reason, although they were available to patients here at the time.
The stories I heard about the patients who came ahead of me scared me so much that I was very interested in trying the new treatments. One friend of mine whose husband died from myeloma is still surprised to see me doing well, which is a bit disconcerting to me at times.
As an aside, I met a couple from Ohio when we were on holiday last spring in Quebec City. I asked them why Ohio is called the 'buckeye state'. They told me that it was sort of a fruit from a tree that falls like an acorn! There are people here on the Beacon who refer to themselves as 'Buckeyes' and I didn't know what that meant.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
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