| Author |
|
brainman
Site Admin
Joined: 13 Oct 2005
Posts: 5617
Location: Tennessee
|
|
| Back to top |
|
|
|
Corvette
Regular
Joined: 13 Nov 2007
Posts: 33
Location: North GA
|
 Posted: Wed Nov 14, 2007 9:31 pm Post subject: Re: Stem Cell Transplant Therapy |
 |
|
Hello everybody, I will post my experience with my Stem Cell Transplant in the near future. I will get my wife (my caregiver) to help me as her story is as important as mine. Actually, I think it was harder on her than me.
I am going to write my story using a word processor to speed the process.
If anybody needs some immediate questions answered it is ok to contact me.
wayne@alltel.net 
_________________
Wayne
Male 56 years old
NHL Folicular Large Cell
Two years of Chemo followed by a SCT
Cancer free for three years! |
|
| Back to top |
|
|
|
Corvette
Regular
Joined: 13 Nov 2007
Posts: 33
Location: North GA
|
| Posted: Thu Nov 15, 2007 10:36 pm Post subject: Re: Stem Cell Transplant Therapy |
|
|
This is my story of my Stem Cell Transplant at Vanderbilt University Clinic
Around September of 2004 I was diagnosed with Follicular Large Cell Non-Hodgkin’s Lymphoma. I had a very slow growing nine-centimeter mass that had wrapped around my descending aorta and displaced one of my kidneys. The tumor was inoperable. I had no symptoms at all except for some sores around my ankles that never healed. The doctor said I might have had cancer for one to three years before it was ever discovered.
I had to start chemo ASAP which only shrunk the tumor slightly. The oncologist decided to send me to Vanderbilt University to see if I qualified for a SCT. The doctors at Vanderbilt did several tests and concluded that another round of more powerful chemo was in order. I must say this was a grueling round, which ruined the blood vessels in my arms. The tumor shrunk about 50% but refused to go away completely. I was sent back to Vanderbilt for another reevaluation. This time it was decided transplant was necessary.
First we had to go to Vanderbilt and talk about the procedures and receive a schedule. They also gave me a very complete physical including blood work that looked for any disease or infection that might become a problem during transplant. I also met my councilors and social workers. You are assigned councilors and social workers to help coordinate insurance, housing, mental health and instructions for your caregiver. By the way you cannot do this alone. You have to have a caregiver. At this time we applied for an apartment close to Vanderbilt. Then I was sent back home. We had to get a friend to feed our pets while we were gone. I also had to get a dental exam and teeth cleaned before I started transplant.
Finally it was time to start. The first thing was to install my Hickman catheter. They don’t knock you out to do this but they do drug you heavily. The second thing was stem cell mobilization. I was given a huge dose of Cytoxan and taught how to give myself a shot. I had to give myself growth hormone shots for a week. I was then sent back home for that week to do this. The Cytoxan only made me sick for a couple of days but the growth hormone made my bones ache but not badly. BTW, giving myself a shot was not a problem. It hurt less when I did it myself other than letting somebody else do it. I don’t think I worked during this week home. This stage of the treatment was easy in my opinion and I found myself anxious to get on with the rest of the treatment.
Time to go back to Vanderbilt. We moved into a temporary apartment while our other one was being prepared. I also started daily blood tests to find out when it was time to harvest my stem cells. I also had to double up on the growth hormone. There is only a small window of opportunity to harvest the stem cells so as I mentioned earlier blood tests are every day.
We finally got to move into our apartment and it was time to harvest my stem cells. To harvest stem cells you are put on a dialysis machine that is set to remove stem cells. They call this aphaeresis. I was put on the machine for two days for about four hours each day. During the process I was drained of calcium and my fingers and lips started to tingle. As soon as this starts to happen they give you Tums to replenish your calcium. This procedure was basically painless and boring.
Yahoo, no more shots BUT now it’s time to get the huge dose of chemo that will kill the cancer and also kill your bone morrow. The chemo which was 20 times stronger than anything else I have ever had earlier was rough as it caused severe nausea and diarrhea to the point of causing me to become an inpatient for two days. I was not allowed to eat and they fed me through my catheter until they got my nausea and diarrhea under control. After these the two miserable days I got to return to our apartment. Also, I had to start wearing a mask to protect myself from germs. I was given a pillbox that was divided up for several days. I had so many pills to take it was difficult to keep track of them all but they were all necessary because it was an artificial immune system that the doctors had created to help keep me free of infection. This part of the treatment was rough.
At this point I am starting to feel pretty bad. Everyday my blood is tested and everyday I see my blood count drop. They also watch my “in and out” sheet very closely. The “in and out” sheet/chart shows everything I ate and drank and everything that came out and is recorded by my caregiver. If the “in and out” is not balanced they balance it by IV fluids. Sometimes I retained water and was given a diuretic. I could feel myself getting weaker everyday as my blood count dropped. My mouth started getting soar. I was given mouthwash that would help prevent thrush and another type of mouthwash that numbed the tissues. My blood pressure stayed good the whole time but my heart rate kept increasing as my blood count dropped. My pulse rate eventually hit about 100bpm. So far so good.
After a few days I woke up in the middle of the night covered with loose hair. I must admit having my hair fall out was kind of creepy. My wife and I stood in front of the mirror pulling out the loose hair and nearly died laughing at it. Humor is difficult during transplant but I laughed a lot. Also, the transplant team at Vanderbilt is just fantastic. They will not let your mental health deteriorate. I always spent four to six hours everyday in the clinic and during that time up and coming country music stars would visit you in your cubical and sing and play for you. Being a musician I really enjoyed it.
Finally time to get my stem cells back. They call this “day zero”. They keep your cells frozen until time for transplant. They roll a cart to your cubical with the frozen cells and thaw them in front of you. A nurse practitioner administered the transplant. I felt cold during the procedure. My temperature went up to 99 degrees, which I think, was the limit. This procedure was uneventful. After you get your cells you simply go back to your apartment.
My blood finally hit rock bottom and I got my first of many transfusions. I would get a bag of red cells and a bag of platelets. When you get the red cells you get a bit of energy back for a couple of days. This procedure usually isn’t a big deal but I did have a reaction to the last bag of platelets. This was the only time I was scared. My throat closed off and I couldn’t breath. The nurses knew immediately what was happening and administered epinephrine. This was probably my worst day. I must say that was a rare occurrence.
About three days after day zero I got a bad case of folliculitis on my face. They put me on ‘home infusion”. If you get an infection it can be quite serious. Home infusion is where you have to administer an IV yourself while at your apartment. This was a strong antibiotic.
Ten days has past since transplant and I noticed my mouth soars are starting to clear up. Right after that my white blood cell count started coming back. This was a day to celebrate. This was engraftment. Everyday after day ten was a better day. After day thirty I was allowed to go home. Your immune system does not recover fully for nearly a year. During that time I had to avoid uncooked foods such as fruits, vegetables, pets, fish, babies or anything that might be a germ factory.
After I got home it was important to begin radiation treatments. I am about a year and a half after day zero and all is well. The staff at Vanderbilt in Nashville has to be the best in the business and believe in what they are doing.
Was this difficult? Not really but being away from home for nearly two months creates problems. Money is a big issue. A lot of the daily expenses has to come out of your pocket first including rent which was substantial. Insurance will reimburse you but it takes a while. Throughout the SCT I was required to go to the pharmacy for various drugs and I had to pay a co pay. There are many ways to get assistance and your councilors will help if you need it.
One thing I didn't mention earlier is that I have had at least four bone morrow biopsies. I must admit I was worried about the pain associated with the procedure. I was given a choice of being drugged or not. I chose drugs and I didn't feel a thing. I did notice a little pressure on the first one but not on the other ones. So, just don't worry about it. However, you might be a little soar afterwords.
Another thing to mention is that chemo attacks fast growing cells. Your fingernails are fast growing cells and mine actually fell off. The old nail quite growing and died. The new nail grew up under the old one. This was very annoying when the new nail got close to the tip of the finger. The toe nails never fell off but did have a groove in them.
I hope anybody that goes through a SCT like I did fare as well as I did.
_________________
Wayne
Male 56 years old
NHL Folicular Large Cell
Two years of Chemo followed by a SCT
Cancer free for three years! |
|
| Back to top |
|
|
|
Corvette
Regular
Joined: 13 Nov 2007
Posts: 33
Location: North GA
|
| Posted: Sat May 03, 2008 9:31 pm Post subject: Re: Stem Cell Transplant Therapy |
|
|
 I would just like to report that I have just passed the two year mark and I'm still clear of all cancer and I feel great. BTW, the doc said that there was an 80% to 85% chance of it returning in the first two years. I'm passed that now and intend to make it three years. 
_________________
Wayne
Male 56 years old
NHL Folicular Large Cell
Two years of Chemo followed by a SCT
Cancer free for three years! |
|
| Back to top |
|
|
|
brainman
Site Admin
Joined: 13 Oct 2005
Posts: 5617
Location: Tennessee
|
|
| Back to top |
|
|
|
Vee Smith
Moderator
Joined: 12 Feb 2006
Posts: 1003
Location: UK
|
| Posted: Sun May 04, 2008 3:29 pm Post subject: Re: Stem Cell Transplant Therapy |
|
|
Great news.
I can empathise - I have passed the five year point for survival! |
|
| Back to top |
|
|
|
jpollard
Regular
Joined: 05 Mar 2008
Posts: 14
Location: post,texas
|
| Posted: Sun May 04, 2008 5:43 pm Post subject: Re: Stem Cell Transplant Therapy |
|
|
enjoyed the report
started mobilization yeasterday and should start harvest tues
thanks again hard to find many transplant stories |
|
| Back to top |
|
|
|
tibird
New User
Joined: 06 Oct 2008
Posts: 2
Location: Boston, MA
|
| Posted: Mon Oct 06, 2008 4:35 pm Post subject: thanks! |
|
|
Thank you so much for posting your experiences! I stumbled across this with a google search. My fiance had 6 cycles of ABVD & we thought he was done... now, after 2 cycles of RICE & his spankin new hickman catheter, he is getting ready for his stem cell transplant later this month. Seeing how you felt going through it helps me to know what we may expect, which is more comforting than the unknown.
Thank you again for taking the time & congrats on hitting & passing the 2 year mark - best wishes on #3! |
|
| Back to top |
|
|
|
Corvette
Regular
Joined: 13 Nov 2007
Posts: 33
Location: North GA
|
| Posted: Mon Jun 01, 2009 9:38 pm Post subject: Re: Stem Cell Transplant Therapy |
|
|
Hi everybody, I'm a little late to respond but I just passed my 3 year mark and all tests still say I'm clear. I don't think about cancer as much as I used to. Doc says I still need to be tested at least once a year. For those who are wondering about quality of life after transplant I must say mine is very good. I do not have any lingering effects from transplant.
_________________
Wayne
Male 56 years old
NHL Folicular Large Cell
Two years of Chemo followed by a SCT
Cancer free for three years! |
|
| Back to top |
|
|
|
ChemoMan
Moderator
Joined: 04 Jun 2008
Posts: 1068
Location: South Australia
|
| Posted: Tue Jun 02, 2009 2:49 am Post subject: Re: Stem Cell Transplant Therapy |
|
|
Hi Corvette
First thanks for your informative post and second congrats on passing your big milestone and third thanks for the inspiration and hope you have given all of us....
heres to many more trips around the sun for you
_________________
Age 52
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008
Remission confirmed 17 June 2009
http://cancerforums.net/viewtopic.php?t=9620
RULE NUMBER 1.....Don't Panic
RULE NUMBER 2..... Don't forget Rule number 1 |
|
| Back to top |
|
|
|
VladLan
New User
Joined: 01 Jul 2009
Posts: 1
|
| Posted: Thu Jul 02, 2009 12:05 am Post subject: Re: Stem Cell Transplant Therapy |
|
|
Hi Corvette!
Thank you for sharing your experience, it really matters to us now. We are very happy that you were healthy for last three years!
My father has lymphoma in the neck area. He went through cycles of RCHOP and RICE and now getting ready to start transplantation. We are worrying for him a lot and your post really inspired us.
I have a question: how much time passed between you getting intense dose of chemo and day zero?
Thank you
Best wishes,
Vladimir |
|
| Back to top |
|
|
|
LymphomaSon
New User
Joined: 21 Jul 2009
Posts: 1
|
| Posted: Tue Jul 21, 2009 10:20 am Post subject: Re: Stem Cell Transplant Therapy |
|
|
Thanks for the informative post Corvette!
My dad just had a recurrence of Lymphoma and is undergoing RICE treatment and they are recommending SCT (Autologus). He is in India and I am not sure if they will give the same level of commitment and am pretty sure they will not give the same amount of emotional support. Despite the recommendations, my dad is still not clear on what actually happens during the SCT and we are still having a hard time trying to decide if it is worth the risk and difficulty.
Your post with what actually happens in the view of a patient is very helpful. |
|
| Back to top |
|
|
|
Corvette
Regular
Joined: 13 Nov 2007
Posts: 33
Location: North GA
|
| Posted: Mon Jul 27, 2009 7:05 pm Post subject: Re: Stem Cell Transplant Therapy |
|
|
[quote="VladLan"]Hi Corvette!
Thank you for sharing your experience, it really matters to us now. We are very happy that you were healthy for last three years!
My father has lymphoma in the neck area. He went through cycles of RCHOP and RICE and now getting ready to start transplantation. We are worrying for him a lot and your post really inspired us.
I have a question: how much time passed between you getting intense dose of chemo and day zero?
Thank you
Best wishes,
Vladimir[/quote]
First off I'm sorry I don't check the forum every day.
The time is rather short. I think it was around 5 to 7 days but I don't remember for sure. One would think it would take a lot of time to get the drugs out of your system but that's not the case. For me it was mentally a calming relief to get my cells back.
Corvette
_________________
Wayne
Male 56 years old
NHL Folicular Large Cell
Two years of Chemo followed by a SCT
Cancer free for three years! |
|
| Back to top |
|
|
|
|
Search 
Email Digests
Register to post
Profile 
Check private messages 
Log in
What is this ?
We subscribe to the HONcode principles. Verify here. All content and posts are copyright.
