Just registered and not all that familiar with this site other then reading people's posts. Here I am a year into this journey and only now writing something on this site.
Been through six fractured bones, months of chemo, stem cell transplant, and now chemo again. Obviously I'm better off then in the hospital bed, unable to get out of it alone, but still not what I would like to feel like.
Curious about other people's experiences are and maybe we can help each other.
Forums
10 posts
• Page 1 of 1
Re: New to site
Hi Weatly.
I am glad you registered and wrote. Yes, I think it is very helpful to share experiences. I think it is very helpful.
I am glad you registered and wrote. Yes, I think it is very helpful to share experiences. I think it is very helpful.
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antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
Re: New to site
Hi Antelope,
Not sure if you refer to someone by there real name or user name? I see you were diagnosed a bit before me and so I hope things worked out. Feeling better? What have you gone through to help?
My big issue now is tremendous joint pain, I feel as though I've aged 20 years in the past six months. The joint pain they tell me is due to the carfilzomib (Kyprolis) treatments I'm going through. I'm wondering if anyone out there is getting carfilzomib for their chemo?
Not sure if you refer to someone by there real name or user name? I see you were diagnosed a bit before me and so I hope things worked out. Feeling better? What have you gone through to help?
My big issue now is tremendous joint pain, I feel as though I've aged 20 years in the past six months. The joint pain they tell me is due to the carfilzomib (Kyprolis) treatments I'm going through. I'm wondering if anyone out there is getting carfilzomib for their chemo?
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weatley - Name: gary vlahov
- When were you/they diagnosed?: november 2013
- Age at diagnosis: 61
Re: New to site
Greetings, Wheatley.
I am one month behind you, having been diagnosed in December 2013. By then I had a tumor, a vertebra fracture, and also needed surgery to prevent fracture of my femur (thigh bone). I got chemo from January to May, then the high dose chemo and stem cell transplant this summer. Now I am not getting any chemo and have recovered from the transplant. I am almost back to normal like I was before last year. My legs are sometimes stiff and weak, but I don't have pain like you described.
I never took carfizomib, but if you read the "treatments" forum, you will see that chemo can have many side effects, including weakness, aches, diarrhea, shortness of breath, blurred vision, peripheral neuropathy (numbness or burning in hands and feet), and (from the steroids) insomnia and grouchiness. I actually got neuropathy after I was done taking the chemo, which seems strange, but my Mayo Clinic doctor said he has seen that before.
Most side effects taper off once you stop or reduce the chemo, so my hope is that your medications do their job, and you can cut back on them and be rid of that joint pain. My best wishes to you ...
Mister Dana
I am one month behind you, having been diagnosed in December 2013. By then I had a tumor, a vertebra fracture, and also needed surgery to prevent fracture of my femur (thigh bone). I got chemo from January to May, then the high dose chemo and stem cell transplant this summer. Now I am not getting any chemo and have recovered from the transplant. I am almost back to normal like I was before last year. My legs are sometimes stiff and weak, but I don't have pain like you described.
I never took carfizomib, but if you read the "treatments" forum, you will see that chemo can have many side effects, including weakness, aches, diarrhea, shortness of breath, blurred vision, peripheral neuropathy (numbness or burning in hands and feet), and (from the steroids) insomnia and grouchiness. I actually got neuropathy after I was done taking the chemo, which seems strange, but my Mayo Clinic doctor said he has seen that before.
Most side effects taper off once you stop or reduce the chemo, so my hope is that your medications do their job, and you can cut back on them and be rid of that joint pain. My best wishes to you ...
Mister 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: New to site
Hi Wheatley.
Sorry I am so slow to write back to you. Antelope is my user name. My real name is Cathy.
I was diagnosed in May 2012 and that summer was very hard with all the dex, thalidomide, and Velcade plus the emotions of having incurable cancer. It was a very hard summer, so I feel for you. Having joint pain and feeling 20 years older is SO hard. But, my kappa free light chains came down from 950 mg/L to about 35 with all the drugs.
Then, October 31, 2012 my husband and I moved to a nearby city for my stem cell transplant. I came home December 6th and felt weak as a kitten. SCT was about what I expected except I was surprised how much better I felt after I started getting my strength back. My kappa free light chains started to go up a few months later - by February I was out of "normal" range and on Revlimid.
Unfortunately, I went to see my mother at a nursing home and had been on antibiotics, so I got C. diff (terrible diarrhea) for the summer of 2013. Kept trying new medications and I lost 15 pounds. I wondered if I would survive cancer and die from C. diff. But, finally got over that in August 2013 and started feeling much better.
In March 2014, I asked my doctor if there were anything I could do to prolong remission and he said to eat a low carb, diabetic diet. So, I have been doing that and my cancer markers came down into the normal range for 3 months last summer!! But, they were up on Monday. Back up to what they had been in June.
I am a Christian, so I try not to let blood tests affect my peace of mind. My peace comes from my relationship with Jesus, so I try not to worry about the future.
Hope your joint pain is better!
Cathy
Sorry I am so slow to write back to you. Antelope is my user name. My real name is Cathy.
I was diagnosed in May 2012 and that summer was very hard with all the dex, thalidomide, and Velcade plus the emotions of having incurable cancer. It was a very hard summer, so I feel for you. Having joint pain and feeling 20 years older is SO hard. But, my kappa free light chains came down from 950 mg/L to about 35 with all the drugs.
Then, October 31, 2012 my husband and I moved to a nearby city for my stem cell transplant. I came home December 6th and felt weak as a kitten. SCT was about what I expected except I was surprised how much better I felt after I started getting my strength back. My kappa free light chains started to go up a few months later - by February I was out of "normal" range and on Revlimid.
Unfortunately, I went to see my mother at a nursing home and had been on antibiotics, so I got C. diff (terrible diarrhea) for the summer of 2013. Kept trying new medications and I lost 15 pounds. I wondered if I would survive cancer and die from C. diff. But, finally got over that in August 2013 and started feeling much better.
In March 2014, I asked my doctor if there were anything I could do to prolong remission and he said to eat a low carb, diabetic diet. So, I have been doing that and my cancer markers came down into the normal range for 3 months last summer!! But, they were up on Monday. Back up to what they had been in June.
I am a Christian, so I try not to let blood tests affect my peace of mind. My peace comes from my relationship with Jesus, so I try not to worry about the future.
Hope your joint pain is better!
Cathy
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antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
Re: New to site
Hello Cathy and Mister Dana,
Sorry for my late reply. I am so happy that you both shared your stories with me and all who read the forum. I thought I was somewhat alone on this journey.
So Dana, it does sound like you are experiencing many of the things I have experienced. I had six fractures and a plate installed in my left humerus also to prevent a break, as this was one of the larger tumors. It's nice to hear you are almost back to normal after the stem cell transplant, was it your stem cells or someone else's?
I just had my third (or fouth?) bone marrow biopsy and another PET scan and got a call from the doctor yesterday to inform me that things are not going as planned: some tumors are gone, but new ones have appeared. So we are now adding Revlimid to my carfilzomib [Kyprolis] regimen and we shall see what happens.
Funny thing is, I'm feeling a bit better, so he fooled me when he said things are not improving as he wished.
PS: I went to high school with a Dana
Hi Cathy,
I'm surprised you had so much trouble with the dex - Velcade combo, which I had in the beginning with no trouble. I am however not sure about thalidomide, which i did not have. I totally know what you mean about feeling 20 years older. I started feeling older and older about three or so years ago. I kept telling my wife, "ever since I turned 60, I started feeling older." We all dismissed it. Then of course things started breaking, had x-rays and they saw nothing, more things broke, then an MRI and of course they say the Swiss cheese in my bones.
I felt pretty good after the stem cell transplant back in April, then started the carfilzomib, which gave me all the joint pain. Yikes, this was supposed to help! Anyway, I will be adding Revlimid to the carfilzomib next week and meet the doctor on the 30th with possibly a new plan of attack.
Yes, it's tough to come to grips with the fact that we have incurable cancers, but let's all make the best of it!
So glad I have some people to talk to, thank you!
Sorry for my late reply. I am so happy that you both shared your stories with me and all who read the forum. I thought I was somewhat alone on this journey.
So Dana, it does sound like you are experiencing many of the things I have experienced. I had six fractures and a plate installed in my left humerus also to prevent a break, as this was one of the larger tumors. It's nice to hear you are almost back to normal after the stem cell transplant, was it your stem cells or someone else's?
I just had my third (or fouth?) bone marrow biopsy and another PET scan and got a call from the doctor yesterday to inform me that things are not going as planned: some tumors are gone, but new ones have appeared. So we are now adding Revlimid to my carfilzomib [Kyprolis] regimen and we shall see what happens.
Funny thing is, I'm feeling a bit better, so he fooled me when he said things are not improving as he wished.
PS: I went to high school with a Dana
Hi Cathy,
I'm surprised you had so much trouble with the dex - Velcade combo, which I had in the beginning with no trouble. I am however not sure about thalidomide, which i did not have. I totally know what you mean about feeling 20 years older. I started feeling older and older about three or so years ago. I kept telling my wife, "ever since I turned 60, I started feeling older." We all dismissed it. Then of course things started breaking, had x-rays and they saw nothing, more things broke, then an MRI and of course they say the Swiss cheese in my bones.
I felt pretty good after the stem cell transplant back in April, then started the carfilzomib, which gave me all the joint pain. Yikes, this was supposed to help! Anyway, I will be adding Revlimid to the carfilzomib next week and meet the doctor on the 30th with possibly a new plan of attack.
Yes, it's tough to come to grips with the fact that we have incurable cancers, but let's all make the best of it!
So glad I have some people to talk to, thank you!
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weatley - Name: gary vlahov
- When were you/they diagnosed?: november 2013
- Age at diagnosis: 61
Re: New to site
Hi "weatly" / Gary -- Thanks for responding to my earlier comment. Yes, my transplant was an autologous (self donated) rescue transplant to rebuild my marrow after high dose chemo. Sorry to hear you have new lesions. I read an article that says that each of us has several competing subclones of disease that are genetically different from each other due to mutations that occurred after myeloma spread to different sites. So don't lose hope. Different chemo drugs are needed when different variants are active, and that may be why your doc is adding a new one. (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: New to site
Hi Dana,
I had the same transplant (autologous). Prior to that, I had a treatment of Velcade, dex and Revlimid. All of this brought me down to 20% myeloma cells remaining, so everything was looking good. Frankly, I did not and still do not feel sick, but will admit I have a real lack of energy and all my joints hurt.
So, after my last biopsy and PET scan, I was told it is coming back and, frankly, I was told from the beginning that mine was a very resistant cancer. So now I am awaiting a spot in a new study, 13-006 "A". This is a new drug not yet approved by the FDA which is supposed to target the myeloma cells directly and is used along with Revlimid and dex. The new drug has only a number, which is SAR650984.
No spots available until February so, in the meantime,so things don't get worst, my doctor is giving me Revlimid, carfilzomib (Kyprolis), and dex.
Hopefully all of this will put me in remission so I can forget all this for a brief period
Thanks for the conversation, not that many people with myeloma to talk with.
Be well,
Gary
I had the same transplant (autologous). Prior to that, I had a treatment of Velcade, dex and Revlimid. All of this brought me down to 20% myeloma cells remaining, so everything was looking good. Frankly, I did not and still do not feel sick, but will admit I have a real lack of energy and all my joints hurt.
So, after my last biopsy and PET scan, I was told it is coming back and, frankly, I was told from the beginning that mine was a very resistant cancer. So now I am awaiting a spot in a new study, 13-006 "A". This is a new drug not yet approved by the FDA which is supposed to target the myeloma cells directly and is used along with Revlimid and dex. The new drug has only a number, which is SAR650984.
No spots available until February so, in the meantime,so things don't get worst, my doctor is giving me Revlimid, carfilzomib (Kyprolis), and dex.
Hopefully all of this will put me in remission so I can forget all this for a brief period
Thanks for the conversation, not that many people with myeloma to talk with.
Be well,
Gary
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weatley - Name: gary vlahov
- When were you/they diagnosed?: november 2013
- Age at diagnosis: 61
Re: New to site
Hang in there, Gary, and keep us posted on how the new combination of medications works for you. Good luck with the side effects, too.
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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: New to site
Thanks, Dana, I'm sitting here as Memorial Sloan-Kettering awaiting my carfilzomib [Kyprolis] treatment.
I have not had the group of meds together yet, so maybe this will help prior to the trial they want me to try. Time will tell!!
Be well
I have not had the group of meds together yet, so maybe this will help prior to the trial they want me to try. Time will tell!!
Be well
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weatley - Name: gary vlahov
- When were you/they diagnosed?: november 2013
- Age at diagnosis: 61
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