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Re: AC's stem cell transplant in South Florida
Hope all is still going well.
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
Re: AC's stem cell transplant in South Florida
Well, the past month has been an adventure and then some. I have not been able to keep everyone updated on my journey while I was going through the stem cell transplant like I had wanted too. Some days even if I had the energy, I could not even concentrate enough to put two sentences together. Here’s a recap of my stem cell transplant.
Day -2, May 10 2016
I arrived at 10 a.m. at the Sylvester Cancer Center to start my stem cell transplant. It’s a surreal experience when you check into the center. Usually when someone is going to be admitted to the hospital they are admitted by going through surgery or through the ER. Well today, feeling better than I have felt in 6 months, I rolled my suit case up to the 4th floor and went to the nurse’s station, which was expecting me. I felt like I was checking into a hotel, not getting ready to undergo the fight of my life with the stem cell transplant.
I went to my private room with my wife and and unpacked just like I would at a hotel. Soon, I could tell this was no hotel experience that I was getting ready to undergo. This was serious. After I unpacked a team of nurses came in and took blood here and there to make sure my catheter did not have any infection. Then I was wheeled down to imaging to take x-ray after x-ray.
After all the testing, I was waiting back in my room for the ok from the doctors to start the chemo. They brought the chemo back in and I could tell this was nasty stuff. The chemo was orange and had danger signs everywhere. Instead of seeing the chemo as dangerous, I saw the chemo as a lifesaver because without it, my old bone marrow that was producing the cancer could not be killed off to usher my new immune and stem cells in that hopefully will keep my cancer in remission for a long long long time.
One of the most important aspects of the entire stem cell transplant is the ice. Before I was given the chemo, I was brought 6 large cups of ice and told to start eating and not to finish until 30 minutes after the chemo was finished. For anyone reading this and about to undergo a stem cell transplant, the ice is the single most important thing you can do to help yourself and provide the biggest chance to decrease some of the side effects that come from the sores in your mouth.
On the stem cell ward, there were 12 rooms, and patients hear about the ones that have the complications. If you are diligent about eating the ice, hopefully you will not start down the path of sores, not eating, and more complications. I ate so much ice that I still do not want any ice. But, I had zero sores during the entire process and I was able to take my medicine without hurting.
When the chemo started, my mind and body felt like it was detached. My brother was with me the entire time and every minute that went by, I felt like my body was on one side of the room and my mind was on the other. I never hurt, but felt weirder than I have felt ever.
Finally, the chemo was over and it was time for me to sleep and move to Day -1.
Day -1, May 11, 2016
Today is a day of rest. I still had a lot of energy and walked the halls of the stem cell transplant area. On my day of rest, I was thinking I was doing really good and was still my old self.
Day 0, May 12, 2016
It's my birthday ... Time for my stem cells to get back to my warm body. The process was really quick and non-eventful except that my whole family talked about how I smelled like cream of corn that others have mentioned. I did not have too many issues after the transplant, but I could tell my body did not like the preservatives.
Day +1
Day +1 I could tell was the day my body was starting to react to the chemo and to my stem cells. My energy was going down and my appetite was decreasing. I did not have any full blown nausea but everything, including water, tasted bad.
Day +2 - Day +6
These were the HARDEST DAYS of my life, medically. I felt like I had been run over by a couple of semi trucks every day, all day, and had to have a family member even help me out of bed. It is during these days, that if you are going through this, you have to take it minute by minute and keep your spirits high. I knew the days would come and now I had to fight to make it through these days.
One of the most important aspects during these days was that I continued to eat even if it was just crackers. For anyone getting ready to go through this, finding something that you can tolerate is so important so you keep food in your stomach. My stomach started to get bloated because one of the days I did not eat enough crackers.
Day +6 - Day +10
Every day I was getting stronger and stronger. I ended up having a rash that broke out all across my body from the bone marrow stimulant. They tried both types and the rash kept spreading. I consider myself lucky, however, because I never developed any mouth sores and I never needed any transfusions of platelets or blood. My WBC only stayed at less than 0.2 for one day and bounced up and my platelets hit 16 and then bounced back to close to 30. I never developed a fever during the entire time. I considered myself very lucky on all accounts.
Day +11 to Day +15
I would have been able to go home earlier but the rash spread everywhere and the doctors were worried about the effects on me. They ended up doing a skin biopsy, which confirmed it was the bone marrow stimulants they gave me.
On Day +14 I had my catheter out, and on Day +!5, May 28, 2016, I was released from the hospital. I am so thankful for all the support and help that the Sylvester stem cell transplant group provided me. I left without any hair, but I left with hope and a new love for life.
Day +18
Today I walked 2.5 miles outside. I am committed to increasing the amount I walk everyday until I get back to walking 5 miles plus a day. During the stem cell transplant, I was told over and over how important it was to walk, and I truly believe that, besides the ice, the walking is the most beneficial item that I could do for myself.
For anybody going through this now or getting ready to, there is a bright light at the end of the tunnel. There are some days that are hard and on those days, take it minute by minute, day by day, and keep fighting hard.
Thank you for everyone that sent prayers and well wishes to me during my stem cell transplant.
Day -2, May 10 2016
I arrived at 10 a.m. at the Sylvester Cancer Center to start my stem cell transplant. It’s a surreal experience when you check into the center. Usually when someone is going to be admitted to the hospital they are admitted by going through surgery or through the ER. Well today, feeling better than I have felt in 6 months, I rolled my suit case up to the 4th floor and went to the nurse’s station, which was expecting me. I felt like I was checking into a hotel, not getting ready to undergo the fight of my life with the stem cell transplant.
I went to my private room with my wife and and unpacked just like I would at a hotel. Soon, I could tell this was no hotel experience that I was getting ready to undergo. This was serious. After I unpacked a team of nurses came in and took blood here and there to make sure my catheter did not have any infection. Then I was wheeled down to imaging to take x-ray after x-ray.
After all the testing, I was waiting back in my room for the ok from the doctors to start the chemo. They brought the chemo back in and I could tell this was nasty stuff. The chemo was orange and had danger signs everywhere. Instead of seeing the chemo as dangerous, I saw the chemo as a lifesaver because without it, my old bone marrow that was producing the cancer could not be killed off to usher my new immune and stem cells in that hopefully will keep my cancer in remission for a long long long time.
One of the most important aspects of the entire stem cell transplant is the ice. Before I was given the chemo, I was brought 6 large cups of ice and told to start eating and not to finish until 30 minutes after the chemo was finished. For anyone reading this and about to undergo a stem cell transplant, the ice is the single most important thing you can do to help yourself and provide the biggest chance to decrease some of the side effects that come from the sores in your mouth.
On the stem cell ward, there were 12 rooms, and patients hear about the ones that have the complications. If you are diligent about eating the ice, hopefully you will not start down the path of sores, not eating, and more complications. I ate so much ice that I still do not want any ice. But, I had zero sores during the entire process and I was able to take my medicine without hurting.
When the chemo started, my mind and body felt like it was detached. My brother was with me the entire time and every minute that went by, I felt like my body was on one side of the room and my mind was on the other. I never hurt, but felt weirder than I have felt ever.
Finally, the chemo was over and it was time for me to sleep and move to Day -1.
Day -1, May 11, 2016
Today is a day of rest. I still had a lot of energy and walked the halls of the stem cell transplant area. On my day of rest, I was thinking I was doing really good and was still my old self.
Day 0, May 12, 2016
It's my birthday ... Time for my stem cells to get back to my warm body. The process was really quick and non-eventful except that my whole family talked about how I smelled like cream of corn that others have mentioned. I did not have too many issues after the transplant, but I could tell my body did not like the preservatives.
Day +1
Day +1 I could tell was the day my body was starting to react to the chemo and to my stem cells. My energy was going down and my appetite was decreasing. I did not have any full blown nausea but everything, including water, tasted bad.
Day +2 - Day +6
These were the HARDEST DAYS of my life, medically. I felt like I had been run over by a couple of semi trucks every day, all day, and had to have a family member even help me out of bed. It is during these days, that if you are going through this, you have to take it minute by minute and keep your spirits high. I knew the days would come and now I had to fight to make it through these days.
One of the most important aspects during these days was that I continued to eat even if it was just crackers. For anyone getting ready to go through this, finding something that you can tolerate is so important so you keep food in your stomach. My stomach started to get bloated because one of the days I did not eat enough crackers.
Day +6 - Day +10
Every day I was getting stronger and stronger. I ended up having a rash that broke out all across my body from the bone marrow stimulant. They tried both types and the rash kept spreading. I consider myself lucky, however, because I never developed any mouth sores and I never needed any transfusions of platelets or blood. My WBC only stayed at less than 0.2 for one day and bounced up and my platelets hit 16 and then bounced back to close to 30. I never developed a fever during the entire time. I considered myself very lucky on all accounts.
Day +11 to Day +15
I would have been able to go home earlier but the rash spread everywhere and the doctors were worried about the effects on me. They ended up doing a skin biopsy, which confirmed it was the bone marrow stimulants they gave me.
On Day +14 I had my catheter out, and on Day +!5, May 28, 2016, I was released from the hospital. I am so thankful for all the support and help that the Sylvester stem cell transplant group provided me. I left without any hair, but I left with hope and a new love for life.
Day +18
Today I walked 2.5 miles outside. I am committed to increasing the amount I walk everyday until I get back to walking 5 miles plus a day. During the stem cell transplant, I was told over and over how important it was to walk, and I truly believe that, besides the ice, the walking is the most beneficial item that I could do for myself.
For anybody going through this now or getting ready to, there is a bright light at the end of the tunnel. There are some days that are hard and on those days, take it minute by minute, day by day, and keep fighting hard.
Thank you for everyone that sent prayers and well wishes to me during my stem cell transplant.
- Going home!
- IMG_7242v2.jpg (40.25 KiB) Viewed 968 times
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Aclinkboca - Name: AC
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Dec 2015
- Age at diagnosis: 46
Re: AC's stem cell transplant in South Florida
The photo is when I knew it was real and I was going home!
- Cutting the ties!
- IMG_1104-3v2.jpg (89.6 KiB) Viewed 967 times
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Aclinkboca - Name: AC
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Dec 2015
- Age at diagnosis: 46
Re: AC's stem cell transplant in South Florida
Hello AC:
Very glad that you are on the downhill side. Great job on the walking at this point, I would just say, keep increasing, as you said, but at a modest pace.
Best of luck to you. JPC
Very glad that you are on the downhill side. Great job on the walking at this point, I would just say, keep increasing, as you said, but at a modest pace.
Best of luck to you. JPC
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JPC - Name: JPC
Re: AC's stem cell transplant in South Florida
Congratulations on finishing up your transplant, AC. I hope you continue to get stronger, and I agree with JPC that the exercise (walking) program you've been doing is a great idea and will help you a lot.
Re: AC's stem cell transplant in South Florida
Congratulations! It is so inspiring to hear of your progress. I'm transferring to the transplant team in a couple weeks and look to have my "birthday" in August. Your story and so many others' helps so much preparing. Stay strong and take it a day a time.
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Mark Pouley - Name: Mark
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 53
Re: AC's stem cell transplant in South Florida
Day +19
Just went for my first checkup after leaving the hospital on Friday. Already my lab numbers are way up compared to Friday, and the doctor said that it was a direct result of the walking and massages I have been receiving. Sylvester had a massage therapist for the stem cell group and I was lucky to have insurance that pays for a therapist to come see me.
My WBC is close to 5 already and my platelets are 346. My numbers are already high enough where the doctor is allowing me to walk on the beach and even swim in my pool. Swimming should further accelerate my bone marrow production, the doctor said. Tonight, I hit the beach and swim.
Mark, if your transplant is set for the August time period, what I learned is that the more active you are now, the quicker you will recover with the best chance to have the lowest complications. I thought about what I was going to go through and set out thinking it was a fight, me against myeloma, and I was determined to win the fight in the fastest time possible. I never thought I would recover this quickly and be able to walk to the beach and go walk outside this fast. I know many here in the forum who have recovered quick and I hope you will too in August. I wish you the best of luck in your journey.
Just went for my first checkup after leaving the hospital on Friday. Already my lab numbers are way up compared to Friday, and the doctor said that it was a direct result of the walking and massages I have been receiving. Sylvester had a massage therapist for the stem cell group and I was lucky to have insurance that pays for a therapist to come see me.
My WBC is close to 5 already and my platelets are 346. My numbers are already high enough where the doctor is allowing me to walk on the beach and even swim in my pool. Swimming should further accelerate my bone marrow production, the doctor said. Tonight, I hit the beach and swim.
Mark, if your transplant is set for the August time period, what I learned is that the more active you are now, the quicker you will recover with the best chance to have the lowest complications. I thought about what I was going to go through and set out thinking it was a fight, me against myeloma, and I was determined to win the fight in the fastest time possible. I never thought I would recover this quickly and be able to walk to the beach and go walk outside this fast. I know many here in the forum who have recovered quick and I hope you will too in August. I wish you the best of luck in your journey.
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Aclinkboca - Name: AC
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Dec 2015
- Age at diagnosis: 46
Re: AC's stem cell transplant in South Florida
AC this is such great news! Congrats!
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
Re: AC's stem cell transplant in South Florida
AC,
You have had an amazing recovery thus far, and I hope it continues! Perhaps it is due to your youth and conditioning. I am honestly amazed that you did not need any transfusions! Most patients need some support of that type afterwards. While I commend you on your walking, your ability to force yourself to eat, and your compliance with the ice chips, these tactics do not work for everyone.
I was 59 when I had my transplant. I had always been fit (I worked out 5 days per week), and had no other chronic conditions that I was being treated for. During my induction, I lost about 15 pounds, and I was not a big person to begin with. I came into the transplant in CR or near CR, depending upon which doctor was evaluating me. I chewed ice chips before and for many hours even after I received the melphalan, but I developed mucositis anyway, and I had lots of trouble swallowing. I was not permitted to walk in the halls for a few days because I might pass out due to low blood pressure (in the 80/50 range), even though I argued with the nurses that I was OK and would not pass out. I ran a low temperature when my stem cells engrafted, which is very common. Eating was a challenge. Although I tried to take a few bites out of every meal, there were times when I vomited. I would have preferred not to, believe me. I needed several transfusions, blood and platelets, and some Neupogen injections to boost my white cells, which my doctors said were quite normal things to need. Despite all of this, my doctors said I did well, and I was released on the 17th day, which made me very happy.
However, when I got home, I had significant fatigue, and my nausea lasted for at least 3 months, at least. No matter how hard I tried not to pay attention to it, it was an almost constant presence, and different anti-nausea meds were tried to no avail. Ativan helped a little. No amount of will would make it go away. When you are nauseous, it is difficult to do anything. My weight bottomed out at about 113 pounds. This is about what I weighed in junior high school. I looked like a plucked chicken, and I was pretty weak.
I guess what I am trying to say to other forum members is that, unfortunately, there is a very wide variation in response to transplant. I am not trying to scare anyone, but a transplant is not always a walk in the park. I think your recovery is exceptional and amazing, and I salute your for it! I honestly hope that it continues apace. It gives the myeloma community great pleasure to read about a vigorous recovery such as yours. However, for many of us, no matter how hard we tried, we still needed more time to recover and more supports to do so, and that is OK. It is not always something you can will, and you are indeed a lucky fellow to have been able to overcome the side effects of the transplant in such great form.
I wish you all the best and that you are able to go about your business with the usual energy and return to your normal activities as soon as you want to, but not all of us can do what you were able to do, for any number of reasons, (age, conditioning, complications from induction therapy, developing an infection post transplant, etc). There are many variables and a lot of them are beyond our control.
It reminds me a little of giving birth. I know you are a man and cannot relate to that, but there are some women who give birth with little problem; they seem to sail through the process, need no drugs, and feel great afterwards. Then, there are others who cannot deliver the usual way; who need Caesareans, and other types of procedures to give birth, drugs to bring on labor, drugs to attenuate the effects of a long labor, etc.
But in the end,our babies look into our eyes and know who we are and what we did. And they still call us Mommy.
You have had an amazing recovery thus far, and I hope it continues! Perhaps it is due to your youth and conditioning. I am honestly amazed that you did not need any transfusions! Most patients need some support of that type afterwards. While I commend you on your walking, your ability to force yourself to eat, and your compliance with the ice chips, these tactics do not work for everyone.
I was 59 when I had my transplant. I had always been fit (I worked out 5 days per week), and had no other chronic conditions that I was being treated for. During my induction, I lost about 15 pounds, and I was not a big person to begin with. I came into the transplant in CR or near CR, depending upon which doctor was evaluating me. I chewed ice chips before and for many hours even after I received the melphalan, but I developed mucositis anyway, and I had lots of trouble swallowing. I was not permitted to walk in the halls for a few days because I might pass out due to low blood pressure (in the 80/50 range), even though I argued with the nurses that I was OK and would not pass out. I ran a low temperature when my stem cells engrafted, which is very common. Eating was a challenge. Although I tried to take a few bites out of every meal, there were times when I vomited. I would have preferred not to, believe me. I needed several transfusions, blood and platelets, and some Neupogen injections to boost my white cells, which my doctors said were quite normal things to need. Despite all of this, my doctors said I did well, and I was released on the 17th day, which made me very happy.
However, when I got home, I had significant fatigue, and my nausea lasted for at least 3 months, at least. No matter how hard I tried not to pay attention to it, it was an almost constant presence, and different anti-nausea meds were tried to no avail. Ativan helped a little. No amount of will would make it go away. When you are nauseous, it is difficult to do anything. My weight bottomed out at about 113 pounds. This is about what I weighed in junior high school. I looked like a plucked chicken, and I was pretty weak.
I guess what I am trying to say to other forum members is that, unfortunately, there is a very wide variation in response to transplant. I am not trying to scare anyone, but a transplant is not always a walk in the park. I think your recovery is exceptional and amazing, and I salute your for it! I honestly hope that it continues apace. It gives the myeloma community great pleasure to read about a vigorous recovery such as yours. However, for many of us, no matter how hard we tried, we still needed more time to recover and more supports to do so, and that is OK. It is not always something you can will, and you are indeed a lucky fellow to have been able to overcome the side effects of the transplant in such great form.
I wish you all the best and that you are able to go about your business with the usual energy and return to your normal activities as soon as you want to, but not all of us can do what you were able to do, for any number of reasons, (age, conditioning, complications from induction therapy, developing an infection post transplant, etc). There are many variables and a lot of them are beyond our control.
It reminds me a little of giving birth. I know you are a man and cannot relate to that, but there are some women who give birth with little problem; they seem to sail through the process, need no drugs, and feel great afterwards. Then, there are others who cannot deliver the usual way; who need Caesareans, and other types of procedures to give birth, drugs to bring on labor, drugs to attenuate the effects of a long labor, etc.
But in the end,our babies look into our eyes and know who we are and what we did. And they still call us Mommy.
Re: AC's stem cell transplant in South Florida
Ellen,
Thank you for your comments. You are 100% correct that I consider myself very fortunate not to have the side effects and complications during my stem cell transplant, and not to have needed to have any blood transfusions. I know my age of 46 along with continued high level of activity even after my spine surgery on Christmas Eve, played a big factor in my quick recovery from the stem cell transplant so far.
The purpose of writing my story is because while I was in Sylvester I saw others go through the stem cell transplant but they did not prepare themselves for what was to come. I talked with patients who came into the process who were out of shape and did no exercise leading up to the transplant. I saw others who did not follow the nurses highly suggested comment of "eat ice" until 30 minutes after the melphalan has been finished. I saw others who would lie in their bed and not walk at all.
I never want to suggest that my results will be what others will receive. My purpose is for everyone who will be undergoing the stem cell transplant to undertake everything possible to provide themselves the best chance of having the lowest side effects and the best chance of a quick recovery.
Thank you for your comments. You are 100% correct that I consider myself very fortunate not to have the side effects and complications during my stem cell transplant, and not to have needed to have any blood transfusions. I know my age of 46 along with continued high level of activity even after my spine surgery on Christmas Eve, played a big factor in my quick recovery from the stem cell transplant so far.
The purpose of writing my story is because while I was in Sylvester I saw others go through the stem cell transplant but they did not prepare themselves for what was to come. I talked with patients who came into the process who were out of shape and did no exercise leading up to the transplant. I saw others who did not follow the nurses highly suggested comment of "eat ice" until 30 minutes after the melphalan has been finished. I saw others who would lie in their bed and not walk at all.
I never want to suggest that my results will be what others will receive. My purpose is for everyone who will be undergoing the stem cell transplant to undertake everything possible to provide themselves the best chance of having the lowest side effects and the best chance of a quick recovery.
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Aclinkboca - Name: AC
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Dec 2015
- Age at diagnosis: 46
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