My story from the Personal Stories forum (link to my postings there) continues with a tale of an auto stem cell transplant done as an outpatient at the Mayo Clinic in Minnesota, USA ...
Autologous Stem Cell Transplant at Mayo Clinic
I came to Mayo Clinic for a transplant using bone marrow stem cells harvested from my own body. The transplant does not treat cancer; it is done to keep me from dying from the lethal dose of melphalan they are going to administer to kill malignant plasma cells that may be hiding in my marrow.
The dose will destroy my marrow, and will take a severe, but temporary, toll on the mucosa (lining of the digestive tract, from mouth to anus) as a side effect.Yet it is an outpatient process; Lois and I will be staying in a hotel a few blocks from the clinic in downtown Rochester, Minnesota USA.
Week 1- Preparation
On Tuesday June 24th , I repeated the bone marrow biopsy and PET scan to see if any signs of cancer had come back since I was clear in early April; none were seen. Tuesday and Wednesday also included blood, kidney, lung and heart tests to see if I could survive the process. I passed the tests.
Thursday I started getting shots of G-CSF (Neupogen) to multiply the stem cells in my bone marrow and spill them into my bloodstream - two hypos in the belly each day until I had collected my goal. Friday, I had surgery to install a "central line" catheter into two big veins in my chest to provide access to my bloodstream for a month or two. This was done in an OR at Methodist Hospital by a young surgical resident.
Week 2 - Collection of stem cells
Having had the shots, lots of stem cells kick loose into one's blood stream. So you hook up to an apheresis machine via lines to your new central catheter, for daily collection sessions. The machine sucks blood out of you, and occasionally the centrifuge spins. That puts fluid on top, white cells and stem cells in the middle, and red blood on the bottom. A photo sensor guides the machine to pump the middle layer of pink stuff out into a bag.
You just have to hang out for five hours. The apheresis department has good wi-fi, so it is easy "work" to sit there and send emails while the machine does its thing. One day my machine required constant tinkering; the next my machine ran on a automatic the whole time.
The bag goes to the human cell lab, where it is divided into four parts. The lab estimates how many cells have CD34+ protein on their surface. If you reach your goal, enough for two transplants, you are done. Otherwise, come back tomorrow. I got it in only two days. Donation is very individual and I was lucky. We met a guy who got less than a tenth what I got on those two days. He even had the booster drug. I hope it kicked in for him at last.
The other stuff in the bag is white blood cells. Because (a) I had a good outcome from chemo and (b) myeloma hangs out in the marrow not the blood, there should be very few cancer cells sneaking back into my body in the transplant.
So I was done, with little to do from Wednesday to Sunday. Time for a surprise glitch. I started having blood leak out of my chest and that didn't get resolved until Thursday night. We did leave town and drive to our home 100 miles away for the Fourth of July holiday weekend.
Next week is chemo and transplant ...
Forums
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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: Mr. Dana's Stem Cell Transplant (Mayo Clinic, Outpatient
Week 3 - chemo and transplant
On Tuesday and Wednesday, I received the infusions of high dose melphalan. A nurse watches over you as it trickles into your central line. There is a tradition of sucking on ice chips or enjoying Popsicles while this happens. This is based on a belief that less chemo will get into the tissues of your mouth, but I wonder if it works.
On Thursday, after several hours of saline drip, I got the transplant. Again, a nurse watches over you. Like the chemo, I felt nothing amiss. Here is what I wrote to my family:
"Transplant completed today (Thursday July 10 2014) at 11:20 am. Four of the eight baggies, the rest remain frozen in case needed in the future. Lois and Jenny were here to watch. It says "Happy Birthday" on the whiteboard. I've got saline water IV drip until about four pm; it is on a wheeled stand so I can walk about as desired.
No ill effects from the infusion today, nor from the two days of IV chemo, except for the hiccups and I almost never have them normally. Blood counts still normal for me, so for the next three days, maybe longer, I should be able to run on my existing blood without needing assistance or transfusions.
Julie and Paul have joined us. I got out of the transplant at four pm, and by seven our whole family was at the Thursday downtown street fair. I didn't eat street food, but Paul bought me a bag of fresh cookies. I wear a face mask in public, even outdoors. I look like I am going to spray paint a car."
Day 1
I have a ten am daily check up, allowing time for the hotel breakfast. Julie and Paul went with me Friday to learn the drill. Jules texted Jenny "there are nine people in here!". Nurse to weigh me and do blood pressure, dietician (not every day), blood tech trainee, blood tech trainer, the PA who pronounced me as doing great, plus the charge nurse who visited with with me at the end. All of them cheerful, energetic, and "Minnesota Nice".
As predicted, I emitted a bizarre creamed-corn smell from the preservative the cells were frozen in. I didn't smell it but Lois said it was powerful. It is gone now. Today's check up was only one hour. Lois and I met a guy who has been stuck here since February due to a lingering virus. I guess I will keep wearing my face mask! I still can't believe they gave me two or three month's worth of melphalan chemo in two days and I haven't felt anything yet.
On Tuesday and Wednesday, I received the infusions of high dose melphalan. A nurse watches over you as it trickles into your central line. There is a tradition of sucking on ice chips or enjoying Popsicles while this happens. This is based on a belief that less chemo will get into the tissues of your mouth, but I wonder if it works.
On Thursday, after several hours of saline drip, I got the transplant. Again, a nurse watches over you. Like the chemo, I felt nothing amiss. Here is what I wrote to my family:
"Transplant completed today (Thursday July 10 2014) at 11:20 am. Four of the eight baggies, the rest remain frozen in case needed in the future. Lois and Jenny were here to watch. It says "Happy Birthday" on the whiteboard. I've got saline water IV drip until about four pm; it is on a wheeled stand so I can walk about as desired.
No ill effects from the infusion today, nor from the two days of IV chemo, except for the hiccups and I almost never have them normally. Blood counts still normal for me, so for the next three days, maybe longer, I should be able to run on my existing blood without needing assistance or transfusions.
Julie and Paul have joined us. I got out of the transplant at four pm, and by seven our whole family was at the Thursday downtown street fair. I didn't eat street food, but Paul bought me a bag of fresh cookies. I wear a face mask in public, even outdoors. I look like I am going to spray paint a car."
Day 1
I have a ten am daily check up, allowing time for the hotel breakfast. Julie and Paul went with me Friday to learn the drill. Jules texted Jenny "there are nine people in here!". Nurse to weigh me and do blood pressure, dietician (not every day), blood tech trainee, blood tech trainer, the PA who pronounced me as doing great, plus the charge nurse who visited with with me at the end. All of them cheerful, energetic, and "Minnesota Nice".
As predicted, I emitted a bizarre creamed-corn smell from the preservative the cells were frozen in. I didn't smell it but Lois said it was powerful. It is gone now. Today's check up was only one hour. Lois and I met a guy who has been stuck here since February due to a lingering virus. I guess I will keep wearing my face mask! I still can't believe they gave me two or three month's worth of melphalan chemo in two days and I haven't felt anything yet.
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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: Mr. Dana's Stem Cell Transplant (Mayo Clinic, Outpatient
Day 5
Aside from wearing a face mask when outside the room, I had a normal weekend, including taking the family to a nice restaurant on Saturday night. But Lois was right, this pill-taking is not just a chore, it is an ordeal. There are a couple that bring on retching, not a good way to spend a night. We have some tricks to get around that.
Today, Tuesday, is day 5, and I've just seen my blood work online. My immune system is going away and the platelet count is falling, though my hemoglobin is still okay. From here on, I will feel the effects of having no blood cell making until the transplant eventually engrafts and stem cells start to work again.
It is good to be only two blocks from my daily appointment, which takes only an hour. Having a central line makes blood drawing easy, and I am comfortable having those spigots hanging out of my chest. I started my food diary, and the dietician gave me approval based on what I ate yesterday.
Each day you get examined by a PA or one of the doctors. Today it was a partner of my doctor. I told him I was impressed that they had forty docs on the hematology staff and he replied that fifteen of them are myeloma experts. Last year they did over four hundred blood or marrow transplants for various diseases. I am at the right place.
Aside from wearing a face mask when outside the room, I had a normal weekend, including taking the family to a nice restaurant on Saturday night. But Lois was right, this pill-taking is not just a chore, it is an ordeal. There are a couple that bring on retching, not a good way to spend a night. We have some tricks to get around that.
Today, Tuesday, is day 5, and I've just seen my blood work online. My immune system is going away and the platelet count is falling, though my hemoglobin is still okay. From here on, I will feel the effects of having no blood cell making until the transplant eventually engrafts and stem cells start to work again.
It is good to be only two blocks from my daily appointment, which takes only an hour. Having a central line makes blood drawing easy, and I am comfortable having those spigots hanging out of my chest. I started my food diary, and the dietician gave me approval based on what I ate yesterday.
Each day you get examined by a PA or one of the doctors. Today it was a partner of my doctor. I told him I was impressed that they had forty docs on the hematology staff and he replied that fifteen of them are myeloma experts. Last year they did over four hundred blood or marrow transplants for various diseases. I am at the right place.
-
Mister Dana - Name: Mister Dana
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: December 2013
- Age at diagnosis: 66
Re: Mr. Dana's Stem Cell Transplant (Mayo Clinic, Outpatient
The Bad Times
It is now (Tuesday) Day 12 and I have been in digestive system hell, as my throat and stomach, burned out from the chemo, try to cope with the antibiotics I have to put down there. Saturday night (day 9-10) was the worst, dry heaves every ninety minutes all night long. Now I have a nausea med that controls that, so instead of gagging I wake to the lesser evils of hiccups, coughing, and the always pleasant mouthful of phlegm. Better.
My white count is starting to rise off of a zero level, and my platelet count is higher than after I got the platelet transfusion on Day 9, so in my mind, stem cell engraftment has begun. Red cells live the longest and take the longest amount of time to be replaced by the stem cells, so I plan on experiencing some serious fatigue. That whole cycle is yet to come.
This morning I got a rash, which is a sign the stem cells are firing up. Yay! I've had a bothersome shortage of potassium in my blood, also a hint that blood making is underway. So I celebrated by getting my head shaved!
Julie and Paul have been a huge blessing for us. They attend to my every whim and compete to see who is best at wheeling me around the streets. Lois has had to contend with a flare up of her GERD, a migraine, and a summer cold that has her wearing a mask around me or when she comes to pick me up at the hospital. Other news - a couple of the pill bottles are about to run empty. You take what you can get!
It is now (Tuesday) Day 12 and I have been in digestive system hell, as my throat and stomach, burned out from the chemo, try to cope with the antibiotics I have to put down there. Saturday night (day 9-10) was the worst, dry heaves every ninety minutes all night long. Now I have a nausea med that controls that, so instead of gagging I wake to the lesser evils of hiccups, coughing, and the always pleasant mouthful of phlegm. Better.
My white count is starting to rise off of a zero level, and my platelet count is higher than after I got the platelet transfusion on Day 9, so in my mind, stem cell engraftment has begun. Red cells live the longest and take the longest amount of time to be replaced by the stem cells, so I plan on experiencing some serious fatigue. That whole cycle is yet to come.
This morning I got a rash, which is a sign the stem cells are firing up. Yay! I've had a bothersome shortage of potassium in my blood, also a hint that blood making is underway. So I celebrated by getting my head shaved!
Julie and Paul have been a huge blessing for us. They attend to my every whim and compete to see who is best at wheeling me around the streets. Lois has had to contend with a flare up of her GERD, a migraine, and a summer cold that has her wearing a mask around me or when she comes to pick me up at the hospital. Other news - a couple of the pill bottles are about to run empty. You take what you can get!
-
Mister Dana - Name: Mister Dana
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: December 2013
- Age at diagnosis: 66
Re: Mr. Dana's Stem Cell Transplant (Mayo Clinic, Outpatient
Much Better Times
Friday July 25, Day 15
In the last few days I have turned the corner in so many ways. If you know the scene "It's Alive" from Frankenstein, I am both the creature and of the delighted Dr Frankenstein. The low point was Saturday night, but everything except my hemoglobin has improved since then. And hemo is expected to keep declining because red cells last so long that I am running on cells from before the treatment.
Nausea got treated with shots, but I don't need tham anymore. Part of that was ending some of the obnoxious antibiotic prescriptions. The mouthfuls of mucus got explained away (it was just my espophagus healing), but now it has gone away. For sore throat, I got the magic mouthwash. I probably should have held off, as it isn't covered by pharma insurance and I only swigged it twice. But man, does it work -- one swish of that strawberry sludge and you feel like you've got novocaine all over the back of your mouth. My blood pressure landed me at the nurses station on Sunday with suspected dehydration, but that is all over. The dietician had her last session with me and signed off on me. Julie and Paul returned to Michigan yesterday morning, with my tearful thanks.
Blood work shows leukocytes risen from 0.1 to 1.8, versus a normal range of 3.5 to 10.5. Platelets rose from 7 on Saturday to 106 today. 150+ is normal but the key number is 50, which they say is enough to safely pull the central line out just before you go home. I don't look forward to that because you are awake. The whole thing comes out at once, like ripping the wiring harness out of a car. My neutrophils went from "too few to measure" to 540 yesterday and 460 today. The goal is to get 500 or better for three days in a row before you are safe to released. The nurse explained that even though the normal range is 1700-7000, when they send you home you can see friends, just avoid sick people, babies, dirt, salad bars, and buffets
Yesterday we were given an office appointment with the doc for next week at which he may say, "Get the PA to pull that thing out of your chest. He'll throw a heavy bag of ice on there for a while and then you can leave, not to return for 80 days or so". We were so happy we went to the Thursday street fair again, though this time I was in a wheelchair. But I did eat a well cooked gyro and some homemade cookies. Lois, of course, got fish tacos from Pescara's tent and a summer beer, just like she's had every Thurday for the last month.
In the meantime, I've got to stick with my job of swallowing the usual pills, some big potassium pills, and some monstrous phosphate pills that my stem cells need to make blood out of. If I do that there is a good chance I'll be out of here in a week.
Friday July 25, Day 15
In the last few days I have turned the corner in so many ways. If you know the scene "It's Alive" from Frankenstein, I am both the creature and of the delighted Dr Frankenstein. The low point was Saturday night, but everything except my hemoglobin has improved since then. And hemo is expected to keep declining because red cells last so long that I am running on cells from before the treatment.
Nausea got treated with shots, but I don't need tham anymore. Part of that was ending some of the obnoxious antibiotic prescriptions. The mouthfuls of mucus got explained away (it was just my espophagus healing), but now it has gone away. For sore throat, I got the magic mouthwash. I probably should have held off, as it isn't covered by pharma insurance and I only swigged it twice. But man, does it work -- one swish of that strawberry sludge and you feel like you've got novocaine all over the back of your mouth. My blood pressure landed me at the nurses station on Sunday with suspected dehydration, but that is all over. The dietician had her last session with me and signed off on me. Julie and Paul returned to Michigan yesterday morning, with my tearful thanks.
Blood work shows leukocytes risen from 0.1 to 1.8, versus a normal range of 3.5 to 10.5. Platelets rose from 7 on Saturday to 106 today. 150+ is normal but the key number is 50, which they say is enough to safely pull the central line out just before you go home. I don't look forward to that because you are awake. The whole thing comes out at once, like ripping the wiring harness out of a car. My neutrophils went from "too few to measure" to 540 yesterday and 460 today. The goal is to get 500 or better for three days in a row before you are safe to released. The nurse explained that even though the normal range is 1700-7000, when they send you home you can see friends, just avoid sick people, babies, dirt, salad bars, and buffets
Yesterday we were given an office appointment with the doc for next week at which he may say, "Get the PA to pull that thing out of your chest. He'll throw a heavy bag of ice on there for a while and then you can leave, not to return for 80 days or so". We were so happy we went to the Thursday street fair again, though this time I was in a wheelchair. But I did eat a well cooked gyro and some homemade cookies. Lois, of course, got fish tacos from Pescara's tent and a summer beer, just like she's had every Thurday for the last month.
In the meantime, I've got to stick with my job of swallowing the usual pills, some big potassium pills, and some monstrous phosphate pills that my stem cells need to make blood out of. If I do that there is a good chance I'll be out of here in a week.
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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: Mr. Dana's Stem Cell Transplant (Mayo Clinic, Outpatient
Glad to hear you are doing well, and your "numbers" are rising as expected. Like you, I am a 66 year old male diagnoses in December 2013 and looking at ASCT in the not too distant future. What was your induction regimen and how long we're you on it? Does you doctor plan to continue with maintenance post transplant. Was stem cell harvest and store an option for you?
I wish you continued success and the very best of luck. Thank you for sharing your experience with the myeloma community.
I wish you continued success and the very best of luck. Thank you for sharing your experience with the myeloma community.
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Dano - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan 2014
- Age at diagnosis: 65
Re: Mr. Dana's Stem Cell Transplant (Mayo Clinic, Outpatient
Dano,
My induction therapy was five months of one-day-a-week treatment with "CyBorD", that is, cyclophosphamide [Cytoxan], bortezomib [Velcade], and dexamethasone. That is a very standard treatment per Mayo's mSMART recommendations.
Look for my postings that started July 17th in the "Member Introductions / Personal Stories" forum for details on how extremely well that worked for me.
My induction therapy was five months of one-day-a-week treatment with "CyBorD", that is, cyclophosphamide [Cytoxan], bortezomib [Velcade], and dexamethasone. That is a very standard treatment per Mayo's mSMART recommendations.
Look for my postings that started July 17th in the "Member Introductions / Personal Stories" forum for details on how extremely well that worked for me.
-
Mister Dana - Name: Mister Dana
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: December 2013
- Age at diagnosis: 66
Re: Mr. Dana's Stem Cell Transplant (Mayo Clinic, Outpatient
Goodbye to Mayo Clinic
As expected, I went to my appointments on Day 19 (Tuesday July 29th) and got instructions for how to survive at home, plus my Mayo doctor wrote some prescriptions for me. I will visit Mayo again at Day 100 in October for a bone marrow biopsy and PET scan, since that is the only way to see if my nonsecretory disease is coming back.
My final appointment was to pull out the central line. Surprisingly, for both me and the PA, that didn't go as planned. The darned thing wouldn't come out, and they had to page a surgeon to come in and do it. Thirty minutes total of twisting and yanking, but once it was out, there was no more pain and no blood.
By the next morning we were driving back to the Twin Cities. After a few days of feeling shaky, I started feeling better every day, doing light lawn and garden chores, shopping, etc. I wear a face mask if the lawn mower is involved, and keep one with me for use in crowds. The only side effect I still have is swollen feet and ankles, plus a new affinity for napping. Later this month I'll pay a visit to my oncologist, Dr T, and show her how I am doing.
As expected, I went to my appointments on Day 19 (Tuesday July 29th) and got instructions for how to survive at home, plus my Mayo doctor wrote some prescriptions for me. I will visit Mayo again at Day 100 in October for a bone marrow biopsy and PET scan, since that is the only way to see if my nonsecretory disease is coming back.
My final appointment was to pull out the central line. Surprisingly, for both me and the PA, that didn't go as planned. The darned thing wouldn't come out, and they had to page a surgeon to come in and do it. Thirty minutes total of twisting and yanking, but once it was out, there was no more pain and no blood.
By the next morning we were driving back to the Twin Cities. After a few days of feeling shaky, I started feeling better every day, doing light lawn and garden chores, shopping, etc. I wear a face mask if the lawn mower is involved, and keep one with me for use in crowds. The only side effect I still have is swollen feet and ankles, plus a new affinity for napping. Later this month I'll pay a visit to my oncologist, Dr T, and show her how I am doing.
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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: Mr. Dana's Stem Cell Transplant (Mayo Clinic, Outpatient
Good luck to you and God Bless! Thank you for all your updates and look forward to many more!
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Debbie W - Name: Debbie w
- Who do you know with myeloma?: mom
- When were you/they diagnosed?: june 2014
- Age at diagnosis: 71
Re: Mr. Dana's Stem Cell Transplant (Mayo Clinic, Outpatient
You...are a stud !
Keep going !
Good luck.
Keep going !
Good luck.
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Rneb
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