Non secretory multiple myeloma survivor. 64 years old. First transplant 7/10/10. Second transplant 12/10/10.
Collection of cells - simple, painless procedure ... injections of Neupogen over 2 weeks to jump start cells. Minor discomfort in hips and chest. Felt good when doctos said cells were moving. 22miillion collected over 2 days, 4 hours each sessions. Port in chest hooked up to machine. Very cool watching your blood move around!
2 weeks off first transplant. Stayed in apt complex secure sanitized by Hackensack Medical Center. 10 days of treatment. Wife stayed with me
Second transplant stayed in hospital,16 days, lost 24 pound. Lots issues with afibrillation. Fortunate to have been in hospital. Recovered nicely and now body is quiet
Key is every day in transplant, walk or ride stationary bike in hospital. Slow but steady. You hit rock
bottom mentally and physically, but slowly work your way back and you feel better as time goes by.
Learn new eating habits and sanitary habits Stay strong and stay focused
People who have stem cell transplants are special.
Thank you Hackensack Medical Center, Dr. Vesole, and all the staff.
Forums
Re: Stem cell transplant - what to expect?
My stem cell transplant wasn't as smooth as the other posts.
I had my SCT 6 months after diagnosis. I was 70. The harvest went well -- only took 6 hours to collect 10 million cells. Tri-port was not a problem. I was admitted to the hospital for the SCT. I received melphalan and the infusion with 5 million stem cells within days. So far so good.
Three weeks later, my white blood cells were still in the negative. After 4 weeks, I was infused with the remaining 5 million stem cells. Now I had used all my stem cells. Maybe I should have collected more. The second infusion took. A three week stay turned into 63 days.
My memory of that time is pretty blurry, but my family said I was miserable. Recovery was slow. I am 18 months post SCT. I am not on maintenance. I just had my 73th birthday. I ride my bike 5 miles a day and have added a walk each day. I have not had any complications since leaving the hospital.
The result of the SCT has been positive, even though the procedure had its complications. Is it worth the trouble, you better believe it.
I had my SCT 6 months after diagnosis. I was 70. The harvest went well -- only took 6 hours to collect 10 million cells. Tri-port was not a problem. I was admitted to the hospital for the SCT. I received melphalan and the infusion with 5 million stem cells within days. So far so good.
Three weeks later, my white blood cells were still in the negative. After 4 weeks, I was infused with the remaining 5 million stem cells. Now I had used all my stem cells. Maybe I should have collected more. The second infusion took. A three week stay turned into 63 days.
My memory of that time is pretty blurry, but my family said I was miserable. Recovery was slow. I am 18 months post SCT. I am not on maintenance. I just had my 73th birthday. I ride my bike 5 miles a day and have added a walk each day. I have not had any complications since leaving the hospital.
The result of the SCT has been positive, even though the procedure had its complications. Is it worth the trouble, you better believe it.
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jellybean - Name: JoAnn B
- Who do you know with myeloma?: me
- When were you/they diagnosed?: June 2011
- Age at diagnosis: 70
Re: Stem cell transplant - what to expect?
My experiences with SCT where pretty much in line with everyone else’s expect for one thing which Mike had as well: bone pain from Neupogen. Just like Mike, it was the night before my Hickman port was to be put in for harvesting stem cells at City of Hope.
That evening, I started getting some pain in my back. By midnight it was really bad. I had both morphine and Dilaudid with me for my neuropathy pain, and by the morning I had maxed out my dosage for both and then some, and the pain was still unbearable -- easily the worst pain I ever have had. I had not slept, and breathing was painful. I spent the whole night in a sitting position hunched over and resting my weight on a bunch of pillows stacked on my legs. I could not lie down, it was unbearable.
This was the worst moment I had in my whole myeloma experience, I did not know what was going on, and I could not imagine living with this kind of pain for more than a few days at most. I made it into City of Hope and they gave me some Demerol which finally helped the pain a little bit, and they elected to put me out completely for inserting the Hickman.
The pain returned within minutes when I woke up. After the surgery, I took some ibuprofen and the pain went away nearly completely within about two hours, I was elated and stunned that ibuprofen relieved the pain that morphine, Dilaudid, Oxycodone, and Demerol had just barely touched. I had thought that I was not supposed to take any ibuprofen or aspirin before the surgery to avoid bleeding problems. I think I was mistaken about this, and it was only aspirin that I was not supposed to take, but, regardless, if this ever happens again, I am taking ibuprofen and the surgeon can deal with any bleeding.
Another Beacon reader talked with her doctor about my experience and he affirmed that the pain was swelling caused by Neupogen and that is also why an anti-inflammatory like ibuprofen was most effective for treating the pain.
Also like Mike, I had a 24 million stem cells harvested, enough for 6 to 8 transplants, which are in frozen storage and the most they had harvested from anyone in over a month. They told me that up to about 20% of people never get enough stem cells to do a transplant, so I guess despite the pain I was fortunate is some ways.
I asked the nurses what the all-time record for stem cell harvesting was at City of Hope and they said it was a 4 year old boy who got 70 million. It saddened me to think a 4 year old would have to go through all of this. Maybe he was donating cells. I did not want to ask.
Do not let this scare you. Talk with your doctor about what to do if you get bad bone pain. Most do not, and with the right treatment it can be avoided.
That evening, I started getting some pain in my back. By midnight it was really bad. I had both morphine and Dilaudid with me for my neuropathy pain, and by the morning I had maxed out my dosage for both and then some, and the pain was still unbearable -- easily the worst pain I ever have had. I had not slept, and breathing was painful. I spent the whole night in a sitting position hunched over and resting my weight on a bunch of pillows stacked on my legs. I could not lie down, it was unbearable.
This was the worst moment I had in my whole myeloma experience, I did not know what was going on, and I could not imagine living with this kind of pain for more than a few days at most. I made it into City of Hope and they gave me some Demerol which finally helped the pain a little bit, and they elected to put me out completely for inserting the Hickman.
The pain returned within minutes when I woke up. After the surgery, I took some ibuprofen and the pain went away nearly completely within about two hours, I was elated and stunned that ibuprofen relieved the pain that morphine, Dilaudid, Oxycodone, and Demerol had just barely touched. I had thought that I was not supposed to take any ibuprofen or aspirin before the surgery to avoid bleeding problems. I think I was mistaken about this, and it was only aspirin that I was not supposed to take, but, regardless, if this ever happens again, I am taking ibuprofen and the surgeon can deal with any bleeding.
Another Beacon reader talked with her doctor about my experience and he affirmed that the pain was swelling caused by Neupogen and that is also why an anti-inflammatory like ibuprofen was most effective for treating the pain.
Also like Mike, I had a 24 million stem cells harvested, enough for 6 to 8 transplants, which are in frozen storage and the most they had harvested from anyone in over a month. They told me that up to about 20% of people never get enough stem cells to do a transplant, so I guess despite the pain I was fortunate is some ways.
I asked the nurses what the all-time record for stem cell harvesting was at City of Hope and they said it was a 4 year old boy who got 70 million. It saddened me to think a 4 year old would have to go through all of this. Maybe he was donating cells. I did not want to ask.
Do not let this scare you. Talk with your doctor about what to do if you get bad bone pain. Most do not, and with the right treatment it can be avoided.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Stem cell transplant - what to expect?
Hi LadyLib,
My experience with SCT is a little different than most. Making the stem cells was easy and I did experience the bone pain that both Mike and Eric have written about. Getting bone pain is apparently a good sign that you are making heaps of stem cells (you will probably get sufficient cells in one sitting). The pain for me was not excruciating - it was just relentless and in the end I couldn't cope with it without taking something for it. The sort of pain that you want to cry about but you don't coz you know that you will have to move and it will hurt more.
Apparently the pain is due to the large number of new cells crammed in the bone marrow before they are pushed out into the blood stream. It also hurts when they come out into the blood stream. So the pain is in time with the beating of your heart.
I remember it well as it was Mothers Day here and I was trying to stay as still as possible. I explained it to my children as having an elevator with a limit of 30 people having 80 people in it. I had enough cells in my first sitting for the transplant.
Melphalan was not a problem at the time of infusion. I sucked on ice to decrease the likelihood of damage to my mouth. I had a PICC line put in and getting my cells back was not a problem.
At this stage of the treatment I was an inpatient. Day 10 after the melphalan, when I was neutropenic, I developed neutropenic enterocolitis. As a result of what my myeloma specialist said was the "worst case he's ever seen - third degree burns down the GI tract" -- my lungs collapsed, my kidneys failed, and my heart had a hissy fit. I had gastrointestinal surgeons waiting to remove part of me if I didn't improve. I was on the critical list for a while.
That was in June 2010, so I did get better.
Was the stem cell transplant worth it? For me, personally, it is a resounding NO. The way the SCT works is using a high dose chemo to kill the myeloma and then to reboot the system with new stem cells. The melphalan only killed 16% of my myeloma cells, so I was left to recover and get back to normal while my myeloma kept on growing. So I never achieved a remission through having a transplant.
Has any good come out of my experience? Yes it has. I have since had an allo transplant (April 2011) and am now in remission. Due to my problems associated with melphalan, the conditioning treatment I had for the allo was non-myeloablative. This means that people who are at risk of the detrimental effects of melphalan, or those who can't make their own stem cells, or those who are deemed to be too old for a conventional stem cell transplant, might be able to have an allo.
All the best,
Libby
My experience with SCT is a little different than most. Making the stem cells was easy and I did experience the bone pain that both Mike and Eric have written about. Getting bone pain is apparently a good sign that you are making heaps of stem cells (you will probably get sufficient cells in one sitting). The pain for me was not excruciating - it was just relentless and in the end I couldn't cope with it without taking something for it. The sort of pain that you want to cry about but you don't coz you know that you will have to move and it will hurt more.
Apparently the pain is due to the large number of new cells crammed in the bone marrow before they are pushed out into the blood stream. It also hurts when they come out into the blood stream. So the pain is in time with the beating of your heart.
I remember it well as it was Mothers Day here and I was trying to stay as still as possible. I explained it to my children as having an elevator with a limit of 30 people having 80 people in it. I had enough cells in my first sitting for the transplant.
Melphalan was not a problem at the time of infusion. I sucked on ice to decrease the likelihood of damage to my mouth. I had a PICC line put in and getting my cells back was not a problem.
At this stage of the treatment I was an inpatient. Day 10 after the melphalan, when I was neutropenic, I developed neutropenic enterocolitis. As a result of what my myeloma specialist said was the "worst case he's ever seen - third degree burns down the GI tract" -- my lungs collapsed, my kidneys failed, and my heart had a hissy fit. I had gastrointestinal surgeons waiting to remove part of me if I didn't improve. I was on the critical list for a while.
That was in June 2010, so I did get better.
Was the stem cell transplant worth it? For me, personally, it is a resounding NO. The way the SCT works is using a high dose chemo to kill the myeloma and then to reboot the system with new stem cells. The melphalan only killed 16% of my myeloma cells, so I was left to recover and get back to normal while my myeloma kept on growing. So I never achieved a remission through having a transplant.
Has any good come out of my experience? Yes it has. I have since had an allo transplant (April 2011) and am now in remission. Due to my problems associated with melphalan, the conditioning treatment I had for the allo was non-myeloablative. This means that people who are at risk of the detrimental effects of melphalan, or those who can't make their own stem cells, or those who are deemed to be too old for a conventional stem cell transplant, might be able to have an allo.
All the best,
Libby
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LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: Stem cell transplant - what to expect?
I had my SCT back in July 2011 after coming off Thalomid due to increasing peripheral neuropathy. The stem cell collection was very successful, gathering 4 bags in the one sitting.
I was in my isolation ward for 26 days without too many problems except for an infection on my nose from a pimple that became septic. Some good antibiotics got rid of it, fortunately. I lost every hair on my body and went from 85kg to 72kg in body weight.
Unfortunately my paraprotein, which was around 40 prior to the SCT, only went down to 9 after the procedure, and then plateaued at around 14 for the next 12 months, before it started to rise again, which showed that, as I had expected with the paraprotein count of 9, that the procedure had basically failed to bring about a long-term remission.
When the count was up to 28, my oncologist put me onto monthly infusions of chemo and high-dose dex. During these treatments, I had wonderful trips to France and the Antarctic, where I was very active and with good energy levels.
The chemo regime was only keeping the paraprotein count from sky-rocketing and wasn't reducing the levels, and so I have commenced taking Revlimid rather than partake in another SCT.
This has caused the paraprotein to crash, now at 8 after 3 months. I am on 25 mg daily for a week then 2 weeks off. There are quite a few side effects, especially tiredness and muscle-cramps, but I will take these any day as long as the drug keeps working so well. This good response has also seen my kidneys go from near collapse to back to normal due to the decrease in paraprotein.
Here in Australia, Revlimid is on the Pharmaceutical Benefits Scheme, which means that it only costs $36 a month rather than $7000 a month, which is the actual cost. Thank heaven for our fantastic Universal Medicare Health Scheme here in Australia, which means this PBS is available to all Australians, rich or poor!
My oncologist says that, for me, with a quite aggressive type of myeloma, Revlimid is a better option than another SCT.
I was in my isolation ward for 26 days without too many problems except for an infection on my nose from a pimple that became septic. Some good antibiotics got rid of it, fortunately. I lost every hair on my body and went from 85kg to 72kg in body weight.
Unfortunately my paraprotein, which was around 40 prior to the SCT, only went down to 9 after the procedure, and then plateaued at around 14 for the next 12 months, before it started to rise again, which showed that, as I had expected with the paraprotein count of 9, that the procedure had basically failed to bring about a long-term remission.
When the count was up to 28, my oncologist put me onto monthly infusions of chemo and high-dose dex. During these treatments, I had wonderful trips to France and the Antarctic, where I was very active and with good energy levels.
The chemo regime was only keeping the paraprotein count from sky-rocketing and wasn't reducing the levels, and so I have commenced taking Revlimid rather than partake in another SCT.
This has caused the paraprotein to crash, now at 8 after 3 months. I am on 25 mg daily for a week then 2 weeks off. There are quite a few side effects, especially tiredness and muscle-cramps, but I will take these any day as long as the drug keeps working so well. This good response has also seen my kidneys go from near collapse to back to normal due to the decrease in paraprotein.
Here in Australia, Revlimid is on the Pharmaceutical Benefits Scheme, which means that it only costs $36 a month rather than $7000 a month, which is the actual cost. Thank heaven for our fantastic Universal Medicare Health Scheme here in Australia, which means this PBS is available to all Australians, rich or poor!
My oncologist says that, for me, with a quite aggressive type of myeloma, Revlimid is a better option than another SCT.
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bulldog32 - Name: Peter
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: December 2009
- Age at diagnosis: 59
Re: Stem cell transplant - what to expect?
Oh, and by the way Lady LIb ... all the best for your husband, and I hope that everything goes OK. The treatment for multiple myeloma is getting to be so much better as the years go on.
Cheers from Oz,
Peter
Cheers from Oz,
Peter
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bulldog32 - Name: Peter
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: December 2009
- Age at diagnosis: 59
Re: Stem cell transplant - what to expect?
Hi! I was my father's caregiver. I worried myself sick prior to and during, I was my own enemy and created worst case scenarios that did not hsppen (thankful).
1. Chest port insertion-no sweat. Outpatient procedure.
2. Collection process-my dad said the boredom was the worst part
no pain. There was suspense-we didn't know cell count until next morning. Some people get enough in 1-5 ish days. It is what it is.
3. Admitted to hospital for total of 4 days. Pumped with fluids, prophylactic anti nausea drugs then melphalan then stem cells. We opted to have the chaplain bless the stem cells.
4. Dad never got sick-did awesome, discharged.
5. As expected-felt bad "super tired" at about 10 days when his counts plummetted. He lost his appetite, and needed some platelets for about 2 days. Never readmitted to hospital. In my opinion, the hospital is THE WORST place for an immunocompromised patient.
6. Surprisingly, hair started to fall out about day 14.
7. Drove him to clinic daily to get checked. Requested occasional fluids. He had to wear his mask every day.
8. He got to cuddle his dog b/c he was at home. Had visitors-sickies stayed away.
9. Worst part= he got C.Diff-severe diarrhea. Not sure if hospital/clinic/heavy antibiotics caused it. We reported severe diarrhea and belly cramps to doc, he cured it immediately.
10. By day 30 he was feeling great, eating, antsy, driving, went back home
And here we are 9 months later-he's been working, golfing, drinking beers, got a new puppy, living life. The process physically and emotionally aged him. We are thankful everyday and pray for strength for all.
Hang in there, trust your medical experts, be overly communicative with them. And, try to allow yourself to also take care of you sometimes.
1. Chest port insertion-no sweat. Outpatient procedure.
2. Collection process-my dad said the boredom was the worst part
no pain. There was suspense-we didn't know cell count until next morning. Some people get enough in 1-5 ish days. It is what it is. 3. Admitted to hospital for total of 4 days. Pumped with fluids, prophylactic anti nausea drugs then melphalan then stem cells. We opted to have the chaplain bless the stem cells.
4. Dad never got sick-did awesome, discharged.
5. As expected-felt bad "super tired" at about 10 days when his counts plummetted. He lost his appetite, and needed some platelets for about 2 days. Never readmitted to hospital. In my opinion, the hospital is THE WORST place for an immunocompromised patient.
6. Surprisingly, hair started to fall out about day 14.
7. Drove him to clinic daily to get checked. Requested occasional fluids. He had to wear his mask every day.
8. He got to cuddle his dog b/c he was at home. Had visitors-sickies stayed away.
9. Worst part= he got C.Diff-severe diarrhea. Not sure if hospital/clinic/heavy antibiotics caused it. We reported severe diarrhea and belly cramps to doc, he cured it immediately.
10. By day 30 he was feeling great, eating, antsy, driving, went back home
And here we are 9 months later-he's been working, golfing, drinking beers, got a new puppy, living life. The process physically and emotionally aged him. We are thankful everyday and pray for strength for all.
Hang in there, trust your medical experts, be overly communicative with them. And, try to allow yourself to also take care of you sometimes.
Re: Stem cell transplant - what to expect?
I had my transplant in January of 2010. The process started with a one day admission to the hospital for Cytoxan infusion. I had a little nausea with that, but was managed with nausea medication and quickly resolved. 2 days later a home care nurse came to teach me how to give myself Neupogen injections to continue to encourage the development of stem cells. I did that for 10 days. I had significant gone pain a couple of days prior to harvesting, but I had been warned that this might happen and took acetominophen for the pain. My hair began to come out about 12 days after the Cytoxan infusion. Again, I had been told that might happen and had arranged with my hairdresser to shave my head when it began to occur. On the day of my scheduled harvesting I had a central line placed that was used for the harvesting of the stem cells, for re-infusion of the stem cells and for all blood testing while in the hospital. It only took one 4 hour session to harvest enough stem cells for 2 transplants. My cells were jumping out of my body.
A week after the harvesting I was readmitted to the hospital for the transplant procedure. The first day I received the Melphalan infusion which wipes out your bone marrow. The 2nd day nothing was done. On the 3rd day, which is counted as day zero and your new birthday, my stem cells were re-infused. It took about one hour for that to happen. I was given Ativan prior to the infusion and that kept me pretty much sedated the rest of the day. After that it was just waiting for the stem cells to engraft and my blood numbers to bottom out and then rise again. I was out of bed all day every day walking around the unit, reading, listening to music, on my computer, etc. I had diarrhea for 2 days, nausea starting about day +3 and fatigue for about 3 days when my blood levels bottomed out. Other than that I was good the entire time. No infections at all. I was discharged 13 days after the infusion of the stem cells.
When I got home I was more fatigued because I was more active. I went out for a walk every day, went shopping, went to the movies, went out to eat. I picked times to do these things when there wouldn't be a lot of other people around. I didn't have to wear a mask at any time except in the hospital when I would leave my room for the few days that my blood levels were really low. I went back to work full time as a physical therapist 10 weeks after my transplant. I was fatigued for quite a long time, but gradually was able to do more, stay up later and fell more energetic. My m-spike didn't begin to decrease until 6 months after the transplant and didn't reach 0 until 8 months after the transplant. I was one of those slow responders.
The transplant is scary, but it isn't horrible. With some help from my sister, who came to stay with me for 6 weeks, friends, neighbors and colleagues from work it was quite manageable. My doctor was always uplifting and would tell me that in 2 weeks I would feel so much better. And, each time he said that it came true.
All of our experiences are different, but we have all survived and gone on with our lives.
Best,
Nancy in Phila
multiple myeloma '08, ASCT 1/10
A week after the harvesting I was readmitted to the hospital for the transplant procedure. The first day I received the Melphalan infusion which wipes out your bone marrow. The 2nd day nothing was done. On the 3rd day, which is counted as day zero and your new birthday, my stem cells were re-infused. It took about one hour for that to happen. I was given Ativan prior to the infusion and that kept me pretty much sedated the rest of the day. After that it was just waiting for the stem cells to engraft and my blood numbers to bottom out and then rise again. I was out of bed all day every day walking around the unit, reading, listening to music, on my computer, etc. I had diarrhea for 2 days, nausea starting about day +3 and fatigue for about 3 days when my blood levels bottomed out. Other than that I was good the entire time. No infections at all. I was discharged 13 days after the infusion of the stem cells.
When I got home I was more fatigued because I was more active. I went out for a walk every day, went shopping, went to the movies, went out to eat. I picked times to do these things when there wouldn't be a lot of other people around. I didn't have to wear a mask at any time except in the hospital when I would leave my room for the few days that my blood levels were really low. I went back to work full time as a physical therapist 10 weeks after my transplant. I was fatigued for quite a long time, but gradually was able to do more, stay up later and fell more energetic. My m-spike didn't begin to decrease until 6 months after the transplant and didn't reach 0 until 8 months after the transplant. I was one of those slow responders.
The transplant is scary, but it isn't horrible. With some help from my sister, who came to stay with me for 6 weeks, friends, neighbors and colleagues from work it was quite manageable. My doctor was always uplifting and would tell me that in 2 weeks I would feel so much better. And, each time he said that it came true.
All of our experiences are different, but we have all survived and gone on with our lives.
Best,
Nancy in Phila
multiple myeloma '08, ASCT 1/10
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Stem cell transplant - what to expect?
I was diagnosed with high-risk multiple myeloma in May 2011 at age 63. Harvested 35 million stem cells in June, an afternoon and the following morning as I recall, and had 2 SCTs by the following October, all outpatient. I was treated at UAMS/MIRT in Arkansas. For me, there was little discomfort to those procedures, much like getting a blood or some other transfusion. During that time period, I had 5 heavy dose chemo infusions (carried a small bag with continuous infusion for 4 days) which did cause hair loss and fatigue. The growth factor shots to stimulate the growth of stem cells did cause bone aching at my joints. The triple line in my chest for the transfusions and infusion was troublesome as I seemed to be allergic to the adhesive tape. My vitals were checked on a regular basis and if I needed platelets or blood or fluids, it was infused. I did not have nausea or neuropathy. After my second transplant, I was in complete remission. I developed a blood clot in my leg that was treated with daily shots of a blood thinner, again as outpatient. Since then, I have been on maintenance with weekly low dose chemo of Velcade, Revlimid, and dex, and zometa monthly with virtually no side effects and remain in complete remission. It was all an easier experience, but time consuming (I got a kindle to pass the time), than what I was expecting. Good Luck on your experience.
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davidmackey
Re: Stem cell transplant - what to expect?
I had my SCT in the winter of 2009-2010, following initial treatment with Thalomid and dexa that got me to 90+ remission. I went to John Hopkins for the process, which is mostly outpatient. The whole process was about 2 months, end to end.
I didn't have problems with the first round of chemo or neupogin, and was lucky that my harvest only took about 4 hours one day. In fact, I kept right on working both at home and in the apartment across from Hopkins where we lived. I lost my hair, but we kept our sense of humor and made jokes about how beautiful the shape of my head is.
The second round of chemo was brutal. I ended up in the hospital for nearly a weak -- severe nausea, thrush on my tongue, sores in my mouth and throat, severe diarrhea, severe neutropenia, and fever. The fever, and my inability to keep any medication down, were the keys to putting me inpatient. And then my immune system re-booted, and I got better. It took me several weeks after I came home to get my appetite and energy back, but I was determined, and I've been doing great ever since. I think I have some lasting damage in my digestive system, so I'm starting probiotics today.
It's really important to have a supportive care-giver. I'm normally the care-giver, so it was hard for me to give up control to someone else. But my daughter, who was only 23 at the time, came through for me and was there with me through the whole process -- including giving me the neupogin injections and making sure I was admitted to inpatient care when I got sick.
Dana
I didn't have problems with the first round of chemo or neupogin, and was lucky that my harvest only took about 4 hours one day. In fact, I kept right on working both at home and in the apartment across from Hopkins where we lived. I lost my hair, but we kept our sense of humor and made jokes about how beautiful the shape of my head is.
The second round of chemo was brutal. I ended up in the hospital for nearly a weak -- severe nausea, thrush on my tongue, sores in my mouth and throat, severe diarrhea, severe neutropenia, and fever. The fever, and my inability to keep any medication down, were the keys to putting me inpatient. And then my immune system re-booted, and I got better. It took me several weeks after I came home to get my appetite and energy back, but I was determined, and I've been doing great ever since. I think I have some lasting damage in my digestive system, so I'm starting probiotics today.
It's really important to have a supportive care-giver. I'm normally the care-giver, so it was hard for me to give up control to someone else. But my daughter, who was only 23 at the time, came through for me and was there with me through the whole process -- including giving me the neupogin injections and making sure I was admitted to inpatient care when I got sick.
Dana
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darnold - Name: Dana Arnold
- Who do you know with myeloma?: self
- When were you/they diagnosed?: May 2009
- Age at diagnosis: 52
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