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Re: First infusion of Kyprolis (carfilzomib)
Thanks for clarifying Cheryl G.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: First infusion of Kyprolis (carfilzomib)
Hi Sandy, I did 8 cycles of CRD (or KRD!) in the NIH clinical trial for newly diagnosed myeloma. I am now on the maintenance portion of the trial and doing great. I also smoldered for a short period of time and then progressed to active myeloma like your husband. I had one unpleasant experience similar to your husband's but they attributed it to the pamidronate [Aredia] ... but who knows? It is a powerful combo. I tolerated it well and was able to work and lead a relatively normal life. I had zero PN but some fatigued days. Where is your husband being treated? Clinical trial or no? I know that the KRD combo is now being used upfront by some myeloma experts and, I guess, insurance companies are now reimbursing for its use. Good luck.
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terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
Re: First infusion of Kyprolis (carfilzomib)
Thanks all for your responses and help. We were given the choice of CVD or KRD when we were making the choice. We were looking into joining a clinical utilizing Kyprolis after speaking to a few doctors and hearing how positively they were speaking of Kyprolis --- one at Mayo clinic in Arizona -- but could not find an appropriate trial in our city (Orlando). It seemed that Kyprolis was achieving some very results in trials we were reviewing.
The NCCN changed the classification two days before we had to select a treatment option, and our doctor at Mayo in Jacksonville felt like it would also be a good choice for us, albeit aggressive. Our local oncologist worked with our insurance company and learned that it would be covered, so here we are.
We have been told by our doctors that these mild flu-like symptoms (low grade fever, aches and pains, and congestion) could be side effects of Kyprolis, and we are hoping for a better week next week. They are bad enough to have kept Matt from working much this week (almost unheard of for him).
Anything else that help us to know what to expect, and how to best deal with the side effects would be appreciated. Our doctors do not want Matt to take any Tylenol or anything so we don't mask the symptoms.
Thanks again!
The NCCN changed the classification two days before we had to select a treatment option, and our doctor at Mayo in Jacksonville felt like it would also be a good choice for us, albeit aggressive. Our local oncologist worked with our insurance company and learned that it would be covered, so here we are.
We have been told by our doctors that these mild flu-like symptoms (low grade fever, aches and pains, and congestion) could be side effects of Kyprolis, and we are hoping for a better week next week. They are bad enough to have kept Matt from working much this week (almost unheard of for him).
Anything else that help us to know what to expect, and how to best deal with the side effects would be appreciated. Our doctors do not want Matt to take any Tylenol or anything so we don't mask the symptoms.
Thanks again!
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SandyC63 - Name: SandyC
- Who do you know with myeloma?: My Husband
- When were you/they diagnosed?: 2012
- Age at diagnosis: 51
Re: First infusion of Kyprolis (carfilzomib)
Hi Sandy, hopefully others who did or are doing KRD (CRD) will comment. Several posters on this site like me are in the NIH or Michigan trials. Also, go back and read Kevin Jones's columns on this site. He did the CRD trial in Michigan and his columns are great. Good luck. The combo worked great for me and many others in my trial.
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terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
Re: First infusion of Kyprolis (carfilzomib)
Hi Terry. Thanks for your support and response. I believe that what my husband has experienced is a really bad cold that came on 5 hours after his first Kyprolis treatment. We ended up in the ER Sunday after his fever spiked, and after checking his white blood cell count, and several other things, our doctor cleared us to take Tylenol and other cold medicine, and things are going better now. This must just be a really strange coincidence?
So, we are waiting for the Kyprolis treatment this week, and are hoping for a better experience. I've read some of Kevin's blogs, and will read more. In the clinical you participated in, did you also have an stem cell transplant? This is in our plan at this time, but I'm wondering how effective this might be with CRD? Thanks.
So, we are waiting for the Kyprolis treatment this week, and are hoping for a better experience. I've read some of Kevin's blogs, and will read more. In the clinical you participated in, did you also have an stem cell transplant? This is in our plan at this time, but I'm wondering how effective this might be with CRD? Thanks.
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SandyC63 - Name: SandyC
- Who do you know with myeloma?: My Husband
- When were you/they diagnosed?: 2012
- Age at diagnosis: 51
Re: First infusion of Kyprolis (carfilzomib)
Hello all,
I was recently diagnosed with multiple myeloma on Valentines Day 2013 at 45yrs of age. I broke my arm sliding a bowl to dust. Had a rod put in my arm and did a bout of radiation. Seems like just as I start to feel a little better, they come up with something else to make me feel worse (rod to fix arm, radiation, marrow biopsy, port) and I know I sound like I'm whining but I've never been sick a day in my life till now.
I start my first treatment later today of CYCLONE (Carfilzomib, thalidomide, dexamethasone, and cyclophosphamide). I opted to join the clinical trial at the Mayo Clinic in AZ because it has been showing less neuropathy side effects than the CyBorD treatment.
Personally, none of it sounds like much fun and I know I'm just getting started but I'm already tired of it all. So, what should I expect on this? Do you think I will be able to continue to work full time while on this regime?
I was recently diagnosed with multiple myeloma on Valentines Day 2013 at 45yrs of age. I broke my arm sliding a bowl to dust. Had a rod put in my arm and did a bout of radiation. Seems like just as I start to feel a little better, they come up with something else to make me feel worse (rod to fix arm, radiation, marrow biopsy, port) and I know I sound like I'm whining but I've never been sick a day in my life till now.
I start my first treatment later today of CYCLONE (Carfilzomib, thalidomide, dexamethasone, and cyclophosphamide). I opted to join the clinical trial at the Mayo Clinic in AZ because it has been showing less neuropathy side effects than the CyBorD treatment.
Personally, none of it sounds like much fun and I know I'm just getting started but I'm already tired of it all. So, what should I expect on this? Do you think I will be able to continue to work full time while on this regime?
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Butterfly - Name: Cristina
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 02/14/2013
- Age at diagnosis: 45
Re: First infusion of Kyprolis (carfilzomib)
Butterfly,
If you were relatively healthy prior to treatment, and the multiple myeloma hasn't severely affected you (i.e., bone lesions/fractures, kidney issues, etc. - hopefully the broken arm and rod aren't an indication of potential future issues) there is a good chance you should be able to continue working. I was only anemic, and was able to continue working and exercising througout my entire two years of treatment on CRD - I only missed a total of 6 days work during that period. Several others that post to this site have similar stories. The ongoing treatments, appointments, side effects, etc. can wear you down though. I basically went into my "pacing mode" for two years - continue at a comfortable and sustainable pace until done - much like my approach to spreading 10 yards of bark over the course of a weekend, only on a longer scale. Two suggestions that were given to me that really helped, 1) make sure you do something enjoyable at least once a week, and 2) set aside a short period of time each day for dealing with your cancer, then devote the rest of the day to other activities. These were easier said then done, but as I embraced them more and more, life with cancer became easier. Good luck.
If you were relatively healthy prior to treatment, and the multiple myeloma hasn't severely affected you (i.e., bone lesions/fractures, kidney issues, etc. - hopefully the broken arm and rod aren't an indication of potential future issues) there is a good chance you should be able to continue working. I was only anemic, and was able to continue working and exercising througout my entire two years of treatment on CRD - I only missed a total of 6 days work during that period. Several others that post to this site have similar stories. The ongoing treatments, appointments, side effects, etc. can wear you down though. I basically went into my "pacing mode" for two years - continue at a comfortable and sustainable pace until done - much like my approach to spreading 10 yards of bark over the course of a weekend, only on a longer scale. Two suggestions that were given to me that really helped, 1) make sure you do something enjoyable at least once a week, and 2) set aside a short period of time each day for dealing with your cancer, then devote the rest of the day to other activities. These were easier said then done, but as I embraced them more and more, life with cancer became easier. Good luck.
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Kevin J - Name: Kevin J
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Jan 2011
- Age at diagnosis: 52
Re: First infusion of Kyprolis (carfilzomib)
Thank you Kevin for the information and suggestions. It seems my disease prefers both my arms. I guess you can say I was lucky my arm broke or I would have never known since mine doesn't show in bloodwork. Anyway, I made it through first round of chemo without much side effects. Felt a little nauseous Thursday. I actually had more side effects from the anti-nauseous pill - allergic reaction.
What part of MI are you from? I lived in Michigan for almost 25 years.
What part of MI are you from? I lived in Michigan for almost 25 years.
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Butterfly - Name: Cristina
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 02/14/2013
- Age at diagnosis: 45
Re: First infusion of Kyprolis (carfilzomib)
Butterfly,
I have lived in the Grand Rapids area for the past 32 years, but grew up on the east side of the state. By the way, I am curious whether a SCT is part of the study you're on with CYCLONE treatment, or whether you plan to just go with the chemo for now?
I have lived in the Grand Rapids area for the past 32 years, but grew up on the east side of the state. By the way, I am curious whether a SCT is part of the study you're on with CYCLONE treatment, or whether you plan to just go with the chemo for now?
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Kevin J - Name: Kevin J
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Jan 2011
- Age at diagnosis: 52
Re: First infusion of Kyprolis (carfilzomib)
My wife was diagnosed on March 5 at age 57 - no symptoms - despite stage 2/medium risk. We were skiing two weeks before the diagnosis was made. She was able to join a clinical trial with dexa, carfilzomid, and thalidomide. She's been through two rounds of chemo and the cancer has already dramatically retreated: M-proteins from 56 to 5 and no evidence of free light chains. We'll find out later this week!
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MichaelF
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