I’ve been struggling to get an update put together this weekend. I started the second month of Kyprolis and dexamethasone treatment last Thursday and Friday. My Revlimid treatment cycle is out of sync with the Kyprolis-dex treatment since I got a late start initially, so I will start the 2nd round of Revlimid tonight.
I felt good Saturday and the weather was nice, so we went out for dinner and had boiled crawfish on the patio outside the restaurant. It was great to be out in the warm sun and to eat some tasty Cajun food for Mardi Gras, but by Sunday noon I started to feel the effects of the treatments and was crashed on the couch most of the day, then went to bed early. I’m feeling a little better now but not quite back up to decent speed, so I guess it’s a good thing I have Presidents Day off to recuperate another day.
I am continuing to be pleased with having the port-a-cath installed a few weeks ago. It was such a relief last week to have one stick when the nurse accessed the port and that was it; we used the port line for the blood draw and both treatments (I had them leave the port line in overnight).
All for now – time to take another break.
Forums
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paj1965 - Name: Paul
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/28/16
- Age at diagnosis: 51
Re: Paul, diagnosed yesterday, about to start KRD
I realized this weekend that, if everything continues to go as planned and I can proceed with my transplant after three induction therapy cycles, I am now past the halfway point in my treatment sessions!
I am continuing to be thankful that I am tolerating the treatments well, with the only significant impact being fatigue. I am continuing to do Thursday and Friday treatments, then consistently experiencing the most fatigue by Sunday and Monday and rebounding by the next round of treatment.
As I finish up the second treatment cycle this week, we are hoping for continuing improvement in the numbers. We should find out more during the next consultation with the myeloma doctor early next week. We still haven’t seen the latest M-protein test results but hopefully we will see significant improvement there as well.
We found out at our last consultation that my doctor, who was splitting her time between the myeloma center and the transplant center, is now going full time on the myeloma side so I will be getting a new transplant doctor. We were sorry to hear that as it was nice to only be dealing with one doctor for all of the treatment phases and we really like her, but she told us that the new transplant doctor has a wealth of experience and was her mentor so I am sure that things will work out well. I expect to meet him and his team next month to start talking about the stem cell collection in April.
My family is starting to talk about plans for supporting me during and after the transplant in June. One complication that has come up is my son’s college orientation. The only time that we can schedule it is in June and the only time it works out for my family is the weekend after the transplant. Since my wife and son will have to fly up to the college for the weekend for it, my sister has offered to provide support for me that weekend. I really appreciate this, especially since that is about when I would expect to start experiencing the worst effects and it will no doubt be a challenge for her, but I know that she will be able to handle anything I throw at her – she is in the medical field and is very experienced with dealing with patients.
I started looking into places to stay near MD Anderson in June during and after the transplant. Fortunately, it looks like there won’t be any major events like the Houston Rodeo happening in the area in June that would make finding a place difficult. Many places are on Houston Medical Center shuttle routes so I hope we can take advantage of that and keep the driving (and parking costs) to a minimum.
I am continuing to be thankful that I am tolerating the treatments well, with the only significant impact being fatigue. I am continuing to do Thursday and Friday treatments, then consistently experiencing the most fatigue by Sunday and Monday and rebounding by the next round of treatment.
As I finish up the second treatment cycle this week, we are hoping for continuing improvement in the numbers. We should find out more during the next consultation with the myeloma doctor early next week. We still haven’t seen the latest M-protein test results but hopefully we will see significant improvement there as well.
We found out at our last consultation that my doctor, who was splitting her time between the myeloma center and the transplant center, is now going full time on the myeloma side so I will be getting a new transplant doctor. We were sorry to hear that as it was nice to only be dealing with one doctor for all of the treatment phases and we really like her, but she told us that the new transplant doctor has a wealth of experience and was her mentor so I am sure that things will work out well. I expect to meet him and his team next month to start talking about the stem cell collection in April.
My family is starting to talk about plans for supporting me during and after the transplant in June. One complication that has come up is my son’s college orientation. The only time that we can schedule it is in June and the only time it works out for my family is the weekend after the transplant. Since my wife and son will have to fly up to the college for the weekend for it, my sister has offered to provide support for me that weekend. I really appreciate this, especially since that is about when I would expect to start experiencing the worst effects and it will no doubt be a challenge for her, but I know that she will be able to handle anything I throw at her – she is in the medical field and is very experienced with dealing with patients.
I started looking into places to stay near MD Anderson in June during and after the transplant. Fortunately, it looks like there won’t be any major events like the Houston Rodeo happening in the area in June that would make finding a place difficult. Many places are on Houston Medical Center shuttle routes so I hope we can take advantage of that and keep the driving (and parking costs) to a minimum.
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paj1965 - Name: Paul
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/28/16
- Age at diagnosis: 51
Re: Paul, diagnosed yesterday, about to start KRD
Hi Paul.
Glad the treatment is going so well.
When my husband did his outpatient autologous stem cell transplant (ASCT) last June, the actual medical effects of the transplant were few – mostly fatigue and some anorexia which he forced himself to eat through. My caregiver job was mostly mental support and cooking and cleaning and driving. There was a lot of worrying about the possible and watching for bad things (signs and symptoms) that never materialized. And a lot of vinegar spraying and food prep and boiling and pureeing and laundry and emptying the dishwasher that was a constant.
Mostly it was just a very stressful and isolated time (less so with FaceTime). And a fortunately uneventful one.
I'm a physician, and as a resident doctor in the 1990's I rotated through a bone marrow transplant unit. I expected so much worse. But there wasn't much of my training needed (though I was glad I had it).
In our case we really were under "house arrest". I was instructed to stop seeing patients (and thus avoid sick contacts) 3 weeks before his transplant and through day 21 by his myeloma specialist and the transplant coordinator. I took 6 weeks off work. We anticipated other family helping but decided early on that the plane flights and coming and going and infection risks were not worth it (for us). I stocked the freezer and pantry and we got groceries delivered. We sat in the sun in our backyard and walked outside briefly as his energy and counts permitted. The few visitors had to be healthy and were still masked and scrubbed – and conversation distance away.
You might have your son fly solo for his college orientation (I did for mine in 1980 and it felt like I was really a grown up). The actual college drop off in August-September will be so much sweeter after your summer off treatment and your recovery, for all of you.
Glad the treatment is going so well.
When my husband did his outpatient autologous stem cell transplant (ASCT) last June, the actual medical effects of the transplant were few – mostly fatigue and some anorexia which he forced himself to eat through. My caregiver job was mostly mental support and cooking and cleaning and driving. There was a lot of worrying about the possible and watching for bad things (signs and symptoms) that never materialized. And a lot of vinegar spraying and food prep and boiling and pureeing and laundry and emptying the dishwasher that was a constant.
Mostly it was just a very stressful and isolated time (less so with FaceTime). And a fortunately uneventful one.
I'm a physician, and as a resident doctor in the 1990's I rotated through a bone marrow transplant unit. I expected so much worse. But there wasn't much of my training needed (though I was glad I had it).
In our case we really were under "house arrest". I was instructed to stop seeing patients (and thus avoid sick contacts) 3 weeks before his transplant and through day 21 by his myeloma specialist and the transplant coordinator. I took 6 weeks off work. We anticipated other family helping but decided early on that the plane flights and coming and going and infection risks were not worth it (for us). I stocked the freezer and pantry and we got groceries delivered. We sat in the sun in our backyard and walked outside briefly as his energy and counts permitted. The few visitors had to be healthy and were still masked and scrubbed – and conversation distance away.
You might have your son fly solo for his college orientation (I did for mine in 1980 and it felt like I was really a grown up). The actual college drop off in August-September will be so much sweeter after your summer off treatment and your recovery, for all of you.
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rick - Name: rick
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: nov 2015
- Age at diagnosis: 50
Re: Paul, diagnosed yesterday, about to start KRD
I finished my second month of Kyprolis, Revlimid, and dexamethasone (KRD) induction therapy last Friday. As with the first month, treatment during the second month consisted of daily oral doses of Revlimid, and Kyprolis and dexamethasone via IV on Thursdays and Fridays. I have been fortunate that the only side effects I have noticed during this cycle are significant fatigue that hit on Sundays and Mondays, and constipation that I started to notice generally starting on Sundays.
We met with the myeloma center doctor on Monday to go over the numbers and discuss treatment plans. My numbers are continuing to move rapidly in the right direction - IgG went from 1644 mg/dL to 854 after the first month and is now 642 after month 2. Kappa free light chain went from 26 mg/dL to 5 and is now 1.8. We haven’t seen the latest M-protein (M-spike) number yet. I hope to get that this week.
We are going to press on with a third treatment cycle starting next week, mostly to try and knock down the activity in the rib lesion so that I won’t need to have radiation after the transplant.
I am still on schedule for stem cell harvesting in May and a transplant in early June.
We met with the myeloma center doctor on Monday to go over the numbers and discuss treatment plans. My numbers are continuing to move rapidly in the right direction - IgG went from 1644 mg/dL to 854 after the first month and is now 642 after month 2. Kappa free light chain went from 26 mg/dL to 5 and is now 1.8. We haven’t seen the latest M-protein (M-spike) number yet. I hope to get that this week.
We are going to press on with a third treatment cycle starting next week, mostly to try and knock down the activity in the rib lesion so that I won’t need to have radiation after the transplant.
I am still on schedule for stem cell harvesting in May and a transplant in early June.
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paj1965 - Name: Paul
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/28/16
- Age at diagnosis: 51
Re: Paul, diagnosed yesterday, about to start KRD
Hi Paul.
It was certainly a blow to myself and all my family and friends when the certainty of this diagnosis landed and settled in to stay. So many questions about the disease, treatments, future options and how to 'live with' multiple myeloma as opposed to consider ourselves 'dying from' it.
I was 44, and pretty angry at first, but with incredible support and just the right amount of research, my family and I are facing this thing with all the joy every day can bring. We're astounded at how many drug options there are, and although I relapsed quickly (I have high risk t(14,16) translocation) after my stem cell transplant, I have literally only been sick ONCE in 7 rounds of CyBorD (cyclophosphamide, Velcade, and dexamethasone), the transplant, and now with 5 rounds of Ninlaro (ixazomib), Revlimid, and dex. I have very little side effects and very manageable pain. Amazing.
Short version: You can do this! Keep asking questions, but listen when your heart (or anxiety level) tells you you've googled too long and need to walk away from the computer!
I have bad veins, so the weekly Velcade I got was a challenge with the IV. Ninlaro is an oral drug (yay), but as soon as I go into the next arm of treatment, I am hoping for a port.
Cancer stinks, but we are so thankful for the MANY options available to us, considering this is a rather obscure disease. Stay focused on excellent health, and stay positive!
Betty-Anne
It was certainly a blow to myself and all my family and friends when the certainty of this diagnosis landed and settled in to stay. So many questions about the disease, treatments, future options and how to 'live with' multiple myeloma as opposed to consider ourselves 'dying from' it.
I was 44, and pretty angry at first, but with incredible support and just the right amount of research, my family and I are facing this thing with all the joy every day can bring. We're astounded at how many drug options there are, and although I relapsed quickly (I have high risk t(14,16) translocation) after my stem cell transplant, I have literally only been sick ONCE in 7 rounds of CyBorD (cyclophosphamide, Velcade, and dexamethasone), the transplant, and now with 5 rounds of Ninlaro (ixazomib), Revlimid, and dex. I have very little side effects and very manageable pain. Amazing.
Short version: You can do this! Keep asking questions, but listen when your heart (or anxiety level) tells you you've googled too long and need to walk away from the computer!
I have bad veins, so the weekly Velcade I got was a challenge with the IV. Ninlaro is an oral drug (yay), but as soon as I go into the next arm of treatment, I am hoping for a port.
Cancer stinks, but we are so thankful for the MANY options available to us, considering this is a rather obscure disease. Stay focused on excellent health, and stay positive!
Betty-Anne
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brozema - Name: Betty-Anne Rozema
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: September 4, 2015
- Age at diagnosis: 44
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