Thank goodness I don't make a living by blogging, or I would be living under an overpass somewhere. I apologize for failing miserably for the past week of being more attentive to sharing what is going on with me during my harvest, and I will try my best to get caught up with what has been happening for the past week and answer the questions that were previously asked.
The reason I am having my stem cell transplant now, while I am in complete remission, is for hoped quality of life (QoL). If I did not have my transplant, I would still be on 10 mg of Revlimid, instead of nothing, as is currently the case for me. I can so tell the difference now that is has been a month since I have not been on Revlimid. Nothing is perfect, I have found, when it comes to multiple myeloma, but being off of Revlimid has me one step closer to having the QoL that I so much want. The difference my system feels is amazing. I have felt like I have had some synthetic fluid in my system for the past nearly year and a half, and to no longer have that feeling is wonderful.
Again, with cancer, I have found nothing is perfect, but managing to get a step or two in the direction of being off that drug is a step in the right direction. Please don't get me wrong, as I do appreciate what Revlimid has done to get me to the point of being in complete remission. For that I am eternally grateful.
I talked with my current physician, today, Dr. Gertz, and asked him if it was normal for a patient to have a stem cell transplant while being in complete remission and he said many patients do it. One of the reasons is to have one less thing to fight (cancer) while having the transplant. He also stated the QoL, as well. For me, it was no longer being on Revlimid and using my new healthy stem cells to fight off the multiple myeloma as long as possible.
This past Wednesday, Thursday and Friday, I spent collecting stem cells. This past Wednesday afternoon, I found out I had collected 2.75 million cells and I was instructed to report Wednesday evening for a "booster" shot called plerixafor [Mozobil] to help my stem cells along to be stimulated.
I thought the two Neupogen shots I received each day of the harvest were bad enough (for me, mainly fatigue and bone pain), but the plerixafor just made me downright miserable feeling. The second day, I collected 1.90 million stem cells and I was called and instructed to go down to the Mayo and receive my second plerixafor shot, which I politely declined. I was not ready or willing to go down the path again and felt that, if I could not get the necessary 6.0 million stem cells necessary for two transplants, it was what it was, as I did not want to have another plerixafor shot again.
Mercifully, my third day, I managed to have 1.38 million stem cells, for a three day total of 6.03 million stem cells harvested. What a sigh of relief for me to hear I managed to squeak by with just enough.
My next appointment was not until today (Tuesday) and I had meetings with a couple of RN's and Dr. Gertz, all to prepare me for my next step, which is my transplant. I am to report tomorrow, right after lunch, for my chemo (melphalan) blast, which I have been told will take about 4 or 5 hours. I will have a rest day on Thursday and then on Friday will be my stem cell transplant, which will be around 8 hours or so.
I am not a big fan of Neupogen or plerixafor. They mostly caused me bone pain, nausea, diarrhea and fatigue. I realize that the best is yet to come, when I start feeling the side effects of the melphalan. I am ready to take that step now so I can start looking for the light at the end of the tunnel, which I have been advised will be a few weeks off, yet.
I will try my best to stick to blogging as things go along for me, even after being told the Internet will probably will be the last thing on my mind in about another 10 days, when the melphalan really starts to kick in.
I would not have gotten as far as I have now if it had not been for the support of 3 different caregivers, so far, and another 4 more to help me get through the transplant portion that is upcoming for me.
Forums
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tropicdiver - Name: Bob Phillips
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: My myeloma journey (and experience at Mayo Rochester)
I'm glad that things are going well so far, although I am sorry for your pain and side effects. I'ts 22 degrees here and will stay like this until I head your way so I guess I am getting acclimated to the cold
Mike
Mike
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mikemc2
Re: My myeloma journey (and experience at Mayo Rochester)
Hello Bob,
I too am from southwest Florida and recently had my stem cell transplant at Moffitt Cancer Center in Tampa. The Moffitt myeloma team is excellent, and I could not be more confident or pleased with the care I received . You made the right decision to seek out the best possible myeloma specialist you can find.
My transplant went exceptionally well. I was in the hospital for 15 days, and spent only 6 days as an outpatient before being released to return home.
Everyone is different, and I'm sure everyone has a different story to tell. Keep us posted as best you can on your progress, and I wish you the best possible outcome.
I too am from southwest Florida and recently had my stem cell transplant at Moffitt Cancer Center in Tampa. The Moffitt myeloma team is excellent, and I could not be more confident or pleased with the care I received . You made the right decision to seek out the best possible myeloma specialist you can find.
My transplant went exceptionally well. I was in the hospital for 15 days, and spent only 6 days as an outpatient before being released to return home.
Everyone is different, and I'm sure everyone has a different story to tell. Keep us posted as best you can on your progress, and I wish you the best possible outcome.
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Dano - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan 2014
- Age at diagnosis: 65
Re: My myeloma journey (and experience at Mayo Rochester)
Today has been a brutal day for me. In the past 24 hours, I started feeling incredible pain from my chest catheter to my neck. My sister, Susan, had been after me most of last nite to call Station 94 at the Mayo Clinic and tell them about the pain I was having. Of course, I was smarter than my sister and just continued to take the pain until 4:30 AM today, when I told her to make the call and explain what was going on.
Station 94 told her to get me down to them and we were there by 5:00 AM. They saw redness and swelling of the right side of my neck and redness around where my catheter came out of the right side of my chest. The pain I felt was excruciating (I'd rather pass a kidney stone, any day, than the pain I was feeling). A chest X-ray indicated the line from my artery to my chest catheter was properly in place. The doctor told me it was either an infection or a blood clot.
I was then wheelchaired off to have an ultrasound. After the ultrasound, they determined I had a blood clot where my line entered my artery. Finally got a shot in my gut and lots of pain meds to help me deal with the pain.
After all of the above, I jumped off of the Chemo Hell Cliff, and took a one hour dose of melphalan. There is no turning back now. I have my transplant this Friday, which will last nine hours, I've been told.
I was told, today, the blast of melphalan will probably take 3 to 7 days to hit me and take the wind out of my sails. There will be around a two week period of me being rather ill and then I will slowly start crawling my way back up the cliff. Still shooting to be back home in Florida the second week of December.
Station 94 told her to get me down to them and we were there by 5:00 AM. They saw redness and swelling of the right side of my neck and redness around where my catheter came out of the right side of my chest. The pain I felt was excruciating (I'd rather pass a kidney stone, any day, than the pain I was feeling). A chest X-ray indicated the line from my artery to my chest catheter was properly in place. The doctor told me it was either an infection or a blood clot.
I was then wheelchaired off to have an ultrasound. After the ultrasound, they determined I had a blood clot where my line entered my artery. Finally got a shot in my gut and lots of pain meds to help me deal with the pain.
After all of the above, I jumped off of the Chemo Hell Cliff, and took a one hour dose of melphalan. There is no turning back now. I have my transplant this Friday, which will last nine hours, I've been told.
I was told, today, the blast of melphalan will probably take 3 to 7 days to hit me and take the wind out of my sails. There will be around a two week period of me being rather ill and then I will slowly start crawling my way back up the cliff. Still shooting to be back home in Florida the second week of December.
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tropicdiver - Name: Bob Phillips
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: My myeloma journey (and experience at Mayo Rochester)
What a weird trip I've been on today.
Got down to the Mayo Clinic at 5:30 AM, today.
By around 10:00 AM, Friday, my stem cell transplant was done without any problems. Happy times, right?
After the transplant was completed and I continued to float off down to Chemo Hell, I found out my chest catheter had given me MRSA, which made me check into the hospital. Around 9:00 PM, Friday, I had my chest catheter removed from my body (quick, but not lots of fun). Everyone that comes to my room now gets to garb up in yellow outfits and masks for their protection as well as mine.
This is not the way for me to slide into Chemo Hell, with no immunity system and MRSA. A great medical team is all around doing what appears to be the right thing, IMHO.
It's Saturday morning and I just took a sleeping pill to tell my mind and eyes that sleep is a good thing, but my steroids are telling me the exact opposite ... to stay awake!
Got down to the Mayo Clinic at 5:30 AM, today.
By around 10:00 AM, Friday, my stem cell transplant was done without any problems. Happy times, right?
After the transplant was completed and I continued to float off down to Chemo Hell, I found out my chest catheter had given me MRSA, which made me check into the hospital. Around 9:00 PM, Friday, I had my chest catheter removed from my body (quick, but not lots of fun). Everyone that comes to my room now gets to garb up in yellow outfits and masks for their protection as well as mine.
This is not the way for me to slide into Chemo Hell, with no immunity system and MRSA. A great medical team is all around doing what appears to be the right thing, IMHO.
It's Saturday morning and I just took a sleeping pill to tell my mind and eyes that sleep is a good thing, but my steroids are telling me the exact opposite ... to stay awake!
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tropicdiver - Name: Bob Phillips
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: My myeloma journey (and experience at Mayo Rochester)
Dear TropicDiver,
I am reading your every word with much interest. I will be having my stem cell transplant at Mayo in Rochester in a couple months. Stay strong. I hope the doctors will be able to get rid of the MRSA very quickly. Please know that many, many Beacon readers are interested in your personal medical journey.
All the best to you.
I am reading your every word with much interest. I will be having my stem cell transplant at Mayo in Rochester in a couple months. Stay strong. I hope the doctors will be able to get rid of the MRSA very quickly. Please know that many, many Beacon readers are interested in your personal medical journey.
All the best to you.
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CabinGirl - Who do you know with myeloma?: Self
- When were you/they diagnosed?: Sept. 2014
- Age at diagnosis: 57
Re: My myeloma journey (and experience at Mayo Rochester)
Hey Bob,
MRSA, yikes! Not the way you want to start out on your SCT. But, as you said, you're in good hands at Mayo. I hope things go more smoothly for you from this point on. Hang in there!
Mike
MRSA, yikes! Not the way you want to start out on your SCT. But, as you said, you're in good hands at Mayo. I hope things go more smoothly for you from this point on. Hang in there!
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: My myeloma journey (and experience at Mayo Rochester)
Bob,
I am following your story carefully. Back in September I wrote encouragingly in this thread about my experience at Mayo this summer, but it looks like my wishes for smooth sailing on your part didn't quite come true. You and I had opposite problems with our CVCs: yours is a "clotter" and mine was a leaker.
I found that I went downhill until Day 9 or 10, and started getting better when the stem cells started making blood at Day 12 or so. Hang in there ... By the time they send you home you will feel far better than at the low point.
P.S. If you meet Dr Buadi or Dr Dinghly or PA "Liz" or Emily, or nurse Matt, say hi from me.
Mister Dana (also freezing my butt off here in Minnesota)
I am following your story carefully. Back in September I wrote encouragingly in this thread about my experience at Mayo this summer, but it looks like my wishes for smooth sailing on your part didn't quite come true. You and I had opposite problems with our CVCs: yours is a "clotter" and mine was a leaker.
I found that I went downhill until Day 9 or 10, and started getting better when the stem cells started making blood at Day 12 or so. Hang in there ... By the time they send you home you will feel far better than at the low point.
P.S. If you meet Dr Buadi or Dr Dinghly or PA "Liz" or Emily, or nurse Matt, say hi from me.
Mister Dana (also freezing my butt off here in Minnesota)
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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: My myeloma journey (and experience at Mayo Rochester)
Day +5.
Today, my platelets hit bottom, and am surprised that I am feeling better than I thought I would at this time. Don't get me wrong, I'm not in any shape someone around the block (especially up here in Rochester).
Not having much of an appetite, but doing my best to graze whenever I feel up to it.
My MRSA keeps coming back negative, but I will continue to receive a three hour vancomycin IV every morning when I check into Station 94. The staff treating me and giving me direction are ÜBER spectacular. I could not have found a better medical support staff to help me thru this time in my life.
Today, my platelets hit bottom, and am surprised that I am feeling better than I thought I would at this time. Don't get me wrong, I'm not in any shape someone around the block (especially up here in Rochester).
Not having much of an appetite, but doing my best to graze whenever I feel up to it.
My MRSA keeps coming back negative, but I will continue to receive a three hour vancomycin IV every morning when I check into Station 94. The staff treating me and giving me direction are ÜBER spectacular. I could not have found a better medical support staff to help me thru this time in my life.
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tropicdiver - Name: Bob Phillips
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: My myeloma journey (and experience at Mayo Rochester)
Day + 7
Yesterday and today have been days filled with weakness and overall fatigue. This morning, I have a sore throat that I am having to watch. My nutritionist tells me I am eating and drinking well, which is keeping me from feeling worse.
I am spending a lot of the day sleeping, but the days and nights are dragging by so slowly. I am so ready for my numbers to start to rebound and me feeling like the worst is behind me. I am so over this; knowing I have another three weeks to go is tough to take at times.
Yesterday and today have been days filled with weakness and overall fatigue. This morning, I have a sore throat that I am having to watch. My nutritionist tells me I am eating and drinking well, which is keeping me from feeling worse.
I am spending a lot of the day sleeping, but the days and nights are dragging by so slowly. I am so ready for my numbers to start to rebound and me feeling like the worst is behind me. I am so over this; knowing I have another three weeks to go is tough to take at times.
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tropicdiver - Name: Bob Phillips
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
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