Admitted for transplant

[dpmeeks]

Hi everyone, well I guess my day has arrived, I was admitted well I guess yesterday now, it's 12:44am. I was admitted on 12-31-12. I'm involved In a clinical trial and have been chosen for non myeloblative low dose chemo then BMT planned on the 8th. I can honestly say I'm scared, greatful, and happy all wrapped into one. I'm two hours away from home so ill be away from family most of the time, but, I know God is on my side and have plenty of movies to watch and books to read. They did a spinal tap on me and injected some chemo in my spine, it's sore and they plan to start my chemo tomorrow on the 2nd. Only issue I've had so far I suffer from boils/abscess and of purse I get one on the inside of my leg two days before admission. It opened up a bit and the doc is suppose to lance it today so hopefully it won't be a problem during transplant/chemo. Anyways, god bless and I hope everyone is doing well... Phil

[ssdavi71416]

Phil

Happy new year. Best wishes for your chemo and BMT. I hope everything goes your way. Prayers and all the best for 2013.

[Sally C]

Good morning Phil,
You are so right that God is on your side. He is with you - every step of the way.
I wish you good health and God's Blessing for 2013.
Best wishes,
Sally

[Cam]

You will beat this. Goodluck and keep the Faith...

Cam

[SLB]

All the best, Phil. Good luck & stay strong. Hope it all goes smoothly for you. Sharnie

[Neil Cuadra]

Good luck, Phil. Please keep us up to date on your progress and let us know when we can help with tips or advice.

[Cheryl C]

Best wishes for a successful outcome Phil! God bless and strengthen you.

[dpmeeks]

Well been here since Monday and had my spinal tap and chemo injected in my spine, had the boil lanced on Tuesday and they started my chemo yesterday. Everything has gone good so far, my potassium was showing borderline so they have me some orally and after eating dinner my stomach started cramping and I had a touch of diarehha and still do. I doubt the chemo worked that fast, the nurse asked what I had for dinner and she said another paitient had upset stomach as well after eating chicken noodle soup on the side like I had. Other than that, going good so far. I walked 1 1/2 mile in the hallway and plan on atleast that daily.

[MDSPerth]

Good luck Phil, look forward to seeing your progress here on Marrowforums. We will all have our fingers and toes crossed for a speedy recovery for you.
Regards, Sandi

[dpmeeks]

thank you everyone for the kind words, god bless and ill keep everyone posted, ill be getting my second bag of chemo today...

[dpmeeks]

Done with my last bag of fludarabine . They started me on thymoglobulin today, takes 6 hrs to drip in and I can say it makes you feel like your getting the flu. All my joints started hurting immediatly, nurse said it cuz of the med I have to take it til Monday and then take another med with it tomorrow so I'm Gonna be a walking pharmacy. I did manage to walk 2 1/2 miles in the hallway, it truly helps. Hope everyone is having a blessed day

[Heather8773]

Phil I admire your strength and faith!!! God bless and you will be in my prayers!!! Philippians 4:13

I look forward to reading about your sucessful progress!

[squirrellypoo]

Sounds like you're doing great, Phil! 2.5 miles in a corridor is no joke, keep it up as often as you can.

[dpmeeks]

well, lastnight after getting that first bag of thymogobulin, it hit me like a ton of bricks, I started having joint pain, my fever jumped up to 103, shakes, chills, sweats etc. not a fun night at all . Finally today the fever broke and I sweat it all out of me and feel much better, the doc said its mainly side effects of the thymogobulin. Just finished my second bag today and with some premeds its not hitting me as hard.I have one more bag tomorrow and a bag of TAC ? its another immunosupessor drug and then transplant on Tuesday so im about half way of getting thru all this God has been so very good to me and taking care of me and thank you guys for the support.

[Neil Cuadra]

Originally Posted by dpmeeks

well, lastnight after getting that first bag of thymogobulin, it hit me like a ton of bricks, I started having joint pain, my fever jumped up to 103, shakes, chills, sweats etc. not a fun night at all . Finally today the fever broke and I sweat it all out of me and feel much better, the doc said its mainly side effects of the thymogobulin. Just finished my second bag today and with some premeds its not hitting me as hard.I have one more bag tomorrow and a bag of TAC ? its another immunosupessor drug and then transplant on Tuesday so im about half way of getting thru all this God has been so very good to me and taking care of me and thank you guys for the support.

We so often hear that patients suffered side effects of an initial treatment, then got premeds that made it easier the next time. It makes you wonder why don't they use the premeds the first time. I guess it's because they don't know which side effects will occur for a given patient. You just hate to hear that someone had to endure side effects for which preventative measures are available.

TAC is tacrolimus, an immunosuppressive like cyclosporine.

[dpmeeks]

Neil thank you for the info
there flying in my stem cells tonight and processing then I guess around noon tomorrow ill be getting my transplant . Im nervous and thankful to be able to get the transplant and im so very thankful to God and my donor.

[MDSPerth]

Good luck Phil. Hope all goes well with the transplant. It must be a scary time going into the unknown, but also exciting at the prospect of a potential second chance

Since being a member of this site - mid 2012 - it has astounded me how many matches, and the speed with which the health system in USA finds a marrow match for transplant candidates. The whole process here in Australia seems not to be as efficient.

Perhaps we will have to win the lotto and move to the USA as a patient

[Chirley]

Hi Sandi, when I was looking for a donor I was on the list for 6 months with no match. When it looked like I needed the transplant more urgently they repeated the tissue typing and said they'd start searching the overseas registries. I was a bit shocked to find they hadn't been looking internationally.

Turns out I didn't need it anyway but the whole thing seemed a bit sloppy to me. Then, there's Julie (Victoria) who got a donor match within a month or so......maybe it's just luck.

Regards

Chirley
.

[MDSPerth]

Chirley, this has been explained to us by one of the medical team Paul is under. The Australian Government has a 'budget' for each patient. Resources allow that firstly they test family, if no match, they then go to the Australian registry. If no match is found then and only then, do they go to the international register. They don't give the international register too much push unless it is urgent because it requires more resources!

This all seems very strange because Paul's medical team were talking about early 2013 for a transplant for Paul when they were sibbling testing.

He is fortunate in that since he has been on Neupogen and EPO he has been symptom free. But, lurking in the background is the knowledge that he has the dreaded monosomy 7 and trisomy 8. Only 7 of the 20 cells tested in his BMB showed no chromosome abnormalities.

I read on this site somewhere and thought it was a very apt quote - something like this - "We were driving our own bus along on our pathway of life, and then suddenly a dreaded thing called MDS jumped on and took over the steering wheel for us."

In this instance, we are at the mercy of both this incidious disease and the funds available from the Australian Government.
But, we continue to remain positive that a match will be found.

It makes you very humble when you read some of the stories on this website.

[Sally C]

Best of luck Phil!
God Bless,
Sally

[dpmeeks]

just an update.. things going good so far, I went to bedlast night and i have to say the worst back pain ever started and lasted all night and most of the day. They sent me down for a CAT scan of my kidneys and took another urine sample everything came back normal but the back pain was getting worse. They think its a muscle issue, personally I think its from the lumbar puncture I had when I was admitted. Ive never experienced back pain like that. They ended up putting some morphine in my IV and I guess hopefully itll go away. I truly think the nurse practitioner that did it hit a nerve in my spine. Ive read it may take weeks for it too clear up.
Ive pretty much lost m appetite for anything so ive been nibbling on stuff and drinking the protein drinks. My CBC is still dropping so I guess I wont know if the cells work for another week or so . im already ready to go home

[kwaidz]

Originally Posted by dpmeeks

just an update.. things going good so far

So glad things are going well...and sorry you are in pain. Thanks for your strength, positive attitude and faith. Prayers and positive thoughts coming your way.

[Lori Patrick]

Phil, It is to be expected to have some bad days and that is when I would lean in to God to carry me through. You have a great attitude and I would encourage you to try making a gratitide list to focus on during the bad days. I think one day I really had to stretch to focus - but I did it! May blessings come your way.
Lori

[dpmeeks]

Im trying so hard to be thankful, this back pain is unbelievable at times. I know theres people that are having a rougher time than me and i pray for them. I knew this wasn't going to be easy by no means, I guess I just wasn't expecting the back issue, when it hurts I cant do anything except sit still. I know god will take care of it...

[Lori Patrick]

Phil, I also lost 2 teeth with my platelets very low..... they got infected while I was neutropenic. I also developed a pain in my lower back and abdomen. They thought at one point that they might have had to operate on the abdomen but they did not want to with platelets low --- God took care of it! It went away. I think it is the luck of the draw. I will never forget having those teeth pulled. They were not bad prior to the hospital. Hopefully you are doing well now. Take the meds they give you!!