31 days post bone marrow transplant

Edited Date/Time 3/24/2014 9:43pm
Been back at home for about 2 weeks now. Still get winded going up just a flight of stairs
but cancer's gone for now. Not allowed to be around people yet. So I can't go to the store
or anything like that. It's amazing how fast you lose muscle not doing anything. Got in trouble
for trying to exercise in the hospital. I acquired some blood clots that they are concerned
might move so no exercise and I'm restricted to lifting only 8lbs (that's up from lifting just 3 lbs
last week). Doc says walking only.
Would like to ride some laps at Pala by the end of the year, we'll see.
TM
|
Sandberm
Posts
5845
Joined
3/27/2009
Location
Pasco, WA US
3/2/2014 7:07pm
I'm sorry, I guess I am not aware of the cancer you have/had.

What kind of cancer did you have and how are you doing? You gonna be ok?
XXVoid MainXX
Posts
8105
Joined
5/25/2012
Location
Schenectady, NY US
3/2/2014 7:15pm Edited Date/Time 3/2/2014 7:16pm
Good news! Good luck to you! Going for my first colonoscopy first thing in the morning. My dad just had half his colon removed last year so I'm a little nervous about it.
3/2/2014 7:44pm
Sandberm wrote:
I'm sorry, I guess I am not aware of the cancer you have/had. What kind of cancer did you have and how are you doing? You...
I'm sorry, I guess I am not aware of the cancer you have/had.

What kind of cancer did you have and how are you doing? You gonna be ok?
Thanks,
I have a rare lymphoma. Unfortunately, not something I can get rid of, but should be years out
before going through this again.
3/2/2014 7:48pm
Good news! Good luck to you! Going for my first colonoscopy first thing in the morning. My dad just had half his colon removed last year...
Good news! Good luck to you! Going for my first colonoscopy first thing in the morning. My dad just had half his colon removed last year so I'm a little nervous about it.
Best of luck, the procedure is pretty non-event-full.
Here's to the results being all clear!
TM

The Shop

olddude
Posts
1203
Joined
4/1/2008
Location
US
3/2/2014 7:53pm
I have no words.
3/2/2014 7:56pm
I'm sending positive thoughts your direction.


In the meantime hop on Netflix and watch House of Cards or Breaking Bad!

Also check out True Detective on HBO. These shows are killer; better than movies.
Hut
Posts
10281
Joined
4/27/2010
Location
WA US
3/2/2014 8:22pm
Take care of yourself man, you will get there...
SEEMEFIRST
Posts
13665
Joined
8/21/2006
Location
Arlington, TX US
3/3/2014 2:39am
Kick it's ass, Toolmaker!

Hope you get up and around quickly, and get to go burn some fuel soon.
borg
Posts
6710
Joined
12/7/2009
Location
Long Beach, CA US
3/3/2014 7:10am
Glad to hear you're in recovery. Sounds like you have a great attitude too. That's really important. I've been clean now for 6 years myself.

Sounds like I'm talking about drug treatment or something. Anyway, keep up the good work and post more updates. I like hearing about the details so don't get self conscious about posting about it too much.
vet323
Posts
3583
Joined
7/31/2010
Location
Lead, SD US
3/3/2014 7:15am
Good news-keep pushing forward, bro!
newmann
Posts
24438
Joined
4/1/2008
Location
US
3/3/2014 10:11am
Good luck with your recovery. My brother-in -law was a donor and got to meet the recipient several years down the road. He has had a few issues since being a donor but says he'd do it again. The recipient had the chance to see one daughter graduate and her other get married by then. Also seemed to be doing well when he met her.
philG
Posts
10907
Joined
5/12/2012
Location
GB
3/3/2014 10:20am
hoping you hit your goals ...
Cygnus
Posts
14846
Joined
8/15/2006
Location
Hanover, CO US
3/3/2014 10:41am
Good news, hope it keeps getting better. Keep us posted, specially when you get back on the bike.
The Rock
Posts
8758
Joined
3/21/2007
Location
HAIKU, HI US
3/3/2014 12:04pm
Best of luck with your recovery.
Camp332
Posts
8678
Joined
8/16/2006
Location
Zoo Jersey US
3/3/2014 12:15pm
Here's to you making a solid recovery, and ripping some laps at Pala again!

Do it Bro!
3/3/2014 11:32pm
All the best mate. Stay strong, positive, and focus on getting better.
mx400bee
Posts
237
Joined
7/1/2010
Location
Kannapolis, NC US
3/4/2014 1:01am
Sounds like you`re headed to a full recovery. Listen to your Docs and keep the good attitude and Pala will be here before you know it. Thought I had Lymphoma 6 weeks ago but it turned out to be stage 4 kidney cancer. Started meds a week ago to try and give me some more time and should know by mid April if they`re working. Still feel fine and never had a symptom and found the tumors during a x-ray for Pneumonia. Sneaky stuff.
3/4/2014 12:39pm
mx400bee wrote:
Sounds like you`re headed to a full recovery. Listen to your Docs and keep the good attitude and Pala will be here before you know it...
Sounds like you`re headed to a full recovery. Listen to your Docs and keep the good attitude and Pala will be here before you know it. Thought I had Lymphoma 6 weeks ago but it turned out to be stage 4 kidney cancer. Started meds a week ago to try and give me some more time and should know by mid April if they`re working. Still feel fine and never had a symptom and found the tumors during a x-ray for Pneumonia. Sneaky stuff.
Holy schnitzels. I know the feeling. My dx was a fluke also. I sure hope the meds are effective on you.
I was very lucky in that I responded well to what I've been given so far. One thing I've learned is that,
you absolutely have to go to a major cancer center for information on treatment options. Of course
my situation is that there are not that many docs familiar with my disease. I think my regular onc has
treated maybe 3 others with this in his 30 year career. So in conjunction with my regular onc we've
also had specialists from UCSD with oversight.
Best of luck,
TM
3/4/2014 1:01pm
Thanks every one, appreciate the support,
TM
PastranaWho
Posts
1934
Joined
4/1/2008
Location
Boogie Down Bronx, NY US
3/6/2014 5:46am
Its not easy but keep the fight going and positive as possible.. GOD bless
3/6/2014 2:45pm
ToolMaker wrote:
Been back at home for about 2 weeks now. Still get winded going up just a flight of stairs but cancer's gone for now. Not allowed...
Been back at home for about 2 weeks now. Still get winded going up just a flight of stairs
but cancer's gone for now. Not allowed to be around people yet. So I can't go to the store
or anything like that. It's amazing how fast you lose muscle not doing anything. Got in trouble
for trying to exercise in the hospital. I acquired some blood clots that they are concerned
might move so no exercise and I'm restricted to lifting only 8lbs (that's up from lifting just 3 lbs
last week). Doc says walking only.
Would like to ride some laps at Pala by the end of the year, we'll see.
TM
Wow, positive thoughts and prayers for you.

My longtime friend just had a transplant about 2 weeks ago, in fact his brother just called me yesterday with another update. It was a rough couple of weeks for him but there are no signs of rejection, and he is finally starting to come back around a little. His donor was a female from Europe, and someday he would love the opportunity to thank her as would I and several others. Kind of weird that another person could be a better match than a full blooded brother, but in this case it was true.

I signed up for the donor match program about 11 years ago after a different friend of mine lost his young daughter to a rare form of cancer.

Stay strong and keep the faith.

May God bless you.
3/6/2014 6:32pm
Wow, positive thoughts and prayers for you. My longtime friend just had a transplant about 2 weeks ago, in fact his brother just called me yesterday...
Wow, positive thoughts and prayers for you.

My longtime friend just had a transplant about 2 weeks ago, in fact his brother just called me yesterday with another update. It was a rough couple of weeks for him but there are no signs of rejection, and he is finally starting to come back around a little. His donor was a female from Europe, and someday he would love the opportunity to thank her as would I and several others. Kind of weird that another person could be a better match than a full blooded brother, but in this case it was true.

I signed up for the donor match program about 11 years ago after a different friend of mine lost his young daughter to a rare form of cancer.

Stay strong and keep the faith.

May God bless you.
They have a floor designated just for the BMT patients. Typically they try to get you to walk during the day.
The hallway is a loop, 26 loops is 1 mile. My stay there was 2 months. During my walks I met some of the other
patients. You come to find there is no discrimination on who is affected by this horrible disease. I met
every day Joes like me to CEOs in charge of billions of dollars. Best of luck with your friend, I hope his procedure
is effective against his disease.
TM
500guy
Posts
12469
Joined
8/15/2006
Location
AZ US
3/6/2014 8:45pm
Best wish's to you guy's
burn1986
Posts
12246
Joined
4/16/2010
Location
bossier city, LA US
3/7/2014 5:35am
Wow, preciate you sharing, God Bless!
mx400bee
Posts
237
Joined
7/1/2010
Location
Kannapolis, NC US
3/17/2014 1:00am
Just wanted to check up on you TM to see how your recovery was coming along. Hopefully, your starting your training program for the Pala track day you have coming up in the near future. I finished a cycle with 75% strength Sutent meds without side affects so tomorrow I start 100% with hopes that enough tumor shrinks that my bad kidney could possibly be removed. Doc said that`s my best bet on managing this stuff but, if the surgery is too risky there`s other alternatives that have proven successful so I guess by the end of May I`ll find out. God Bless you brother and I`ll keep sending the prayers from my end.
TeamGreen
Posts
36882
Joined
11/25/2008
Location
Thru-out, CA US
3/17/2014 2:11pm
I'll be awaiting a "Count-Down" to the Pala ride so we can hang and throw roost around.

Manny
borg
Posts
6710
Joined
12/7/2009
Location
Long Beach, CA US
3/17/2014 2:26pm
mx400bee wrote:
Just wanted to check up on you TM to see how your recovery was coming along. Hopefully, your starting your training program for the Pala track...
Just wanted to check up on you TM to see how your recovery was coming along. Hopefully, your starting your training program for the Pala track day you have coming up in the near future. I finished a cycle with 75% strength Sutent meds without side affects so tomorrow I start 100% with hopes that enough tumor shrinks that my bad kidney could possibly be removed. Doc said that`s my best bet on managing this stuff but, if the surgery is too risky there`s other alternatives that have proven successful so I guess by the end of May I`ll find out. God Bless you brother and I`ll keep sending the prayers from my end.
Good luck bee. I'm lucky I never had to deal with chemo. Hopefully this stuff wont jack you while you're on it. Am I correct in assuming you have 1 good kidney?
3/17/2014 8:11pm
mx400bee wrote:
Just wanted to check up on you TM to see how your recovery was coming along. Hopefully, your starting your training program for the Pala track...
Just wanted to check up on you TM to see how your recovery was coming along. Hopefully, your starting your training program for the Pala track day you have coming up in the near future. I finished a cycle with 75% strength Sutent meds without side affects so tomorrow I start 100% with hopes that enough tumor shrinks that my bad kidney could possibly be removed. Doc said that`s my best bet on managing this stuff but, if the surgery is too risky there`s other alternatives that have proven successful so I guess by the end of May I`ll find out. God Bless you brother and I`ll keep sending the prayers from my end.
So I'm kind of at a stand still right now as one of the side effects I acquired was blood clots. I have something called a portacath. It sits on my chest just under the skin. It's excellent for when you get chemo as many of the chemicals are so toxic they damage the veins if you were to just use an IV. So the portacath, the lines are too small for the infusion of stem cells and some times you need to get multiple chemos at the same time that are not compatible, so they installed something called an apheresis port. The apheresis has larger tubes and was on the other side of my chest. Well the tubes are fed through a large vein until it's less than an inch from your heart. Having a foreign object inside me caused me to get a blood clot. They then took that one out and installed a pic line in my arm that also has a tube that is fed through a vein to a very short distance to the heart. 3 days after the install of that I had another blood clot. Due to the location of the clots (both are a direct path to the heart) the doc doesn't want me to do anything or lift anything. At first she gave a limit of 3 lbs. I negotiated up to 8 lbs, I complained at 3 lbs I couldn't even take the milk out from the frig. Meanwhile, I get 2 shots a day for blood thinning. That also is a problem in that if I hit my head I could get a brain bleed. So I have to wait and see how long it takes for the clots to be gone. Regardless of those, I still get winded if I walk too fast or go up a flight of stairs too fast.
So do I understand correctly that your cancer is isolated to one kidney? Why do they change the strength of the meds? Is it so toxic they need to see how you react? Well that's a good sign that you are able to handle lower dose Sutent. Prayers are going right back at you brother that this works. Believe me when I tell you I know exactly what you're going through right now.
TM
3/17/2014 8:14pm
TeamGreen wrote:
I'll be awaiting a "Count-Down" to the Pala ride so we can hang and throw roost around.

Manny
Excellent. I look forward to it!!!
Ken
3/17/2014 9:43pm
mx400bee wrote:
Just wanted to check up on you TM to see how your recovery was coming along. Hopefully, your starting your training program for the Pala track...
Just wanted to check up on you TM to see how your recovery was coming along. Hopefully, your starting your training program for the Pala track day you have coming up in the near future. I finished a cycle with 75% strength Sutent meds without side affects so tomorrow I start 100% with hopes that enough tumor shrinks that my bad kidney could possibly be removed. Doc said that`s my best bet on managing this stuff but, if the surgery is too risky there`s other alternatives that have proven successful so I guess by the end of May I`ll find out. God Bless you brother and I`ll keep sending the prayers from my end.
ToolMaker wrote:
So I'm kind of at a stand still right now as one of the side effects I acquired was blood clots. I have something called a...
So I'm kind of at a stand still right now as one of the side effects I acquired was blood clots. I have something called a portacath. It sits on my chest just under the skin. It's excellent for when you get chemo as many of the chemicals are so toxic they damage the veins if you were to just use an IV. So the portacath, the lines are too small for the infusion of stem cells and some times you need to get multiple chemos at the same time that are not compatible, so they installed something called an apheresis port. The apheresis has larger tubes and was on the other side of my chest. Well the tubes are fed through a large vein until it's less than an inch from your heart. Having a foreign object inside me caused me to get a blood clot. They then took that one out and installed a pic line in my arm that also has a tube that is fed through a vein to a very short distance to the heart. 3 days after the install of that I had another blood clot. Due to the location of the clots (both are a direct path to the heart) the doc doesn't want me to do anything or lift anything. At first she gave a limit of 3 lbs. I negotiated up to 8 lbs, I complained at 3 lbs I couldn't even take the milk out from the frig. Meanwhile, I get 2 shots a day for blood thinning. That also is a problem in that if I hit my head I could get a brain bleed. So I have to wait and see how long it takes for the clots to be gone. Regardless of those, I still get winded if I walk too fast or go up a flight of stairs too fast.
So do I understand correctly that your cancer is isolated to one kidney? Why do they change the strength of the meds? Is it so toxic they need to see how you react? Well that's a good sign that you are able to handle lower dose Sutent. Prayers are going right back at you brother that this works. Believe me when I tell you I know exactly what you're going through right now.
TM
Hang in there guys.

ToolMaker: My buddy is still pretty beat down from the SCTP but they have him trying to get back to solid foods now.

Hope you guys get feeling soon, stay strong.

Post a reply to: 31 days post bone marrow transplant

The Latest