Transplant

[PaulS]

Looks like I'm moving forward to a transplant in the next few weeks - myloablative chemo conditioning followed by stem cell depleted transplant - at least that's the plan. Words of encouragement appreciated - also wondering what to expect for recovery times, any tips to make things easier - anyone out there who had a relatively event free recovery - any long term survivors out there (or maybe they've left the board... Doctor says month in the hospital followed by three months staying close by - not to expect full recovery for two years if all goes well. Trying to get pumped for the long haul. Thanks

[Carole L]

Hi Paul,

I to am awaiting a transplant and can absolutely relate to ALL of your emotions. I have spoken with a number of folks in the outpatient ward who have "come out the other side", in early days of course but all were grateful and hopeful for the procedure.

Faith in your physician, support staff and your body and soul that you can heal and live transfusion free once again

My thoughts and prayers are with you
Carole

[bailie]

Paul and Carole, I wish you the very best. I went through the transplant process pretty much unscathed until Day 230 when I was given my relapse information. It is pretty much the luck of the draw about the relapse, but I wouldn't have lived that long with out the transplant. My life was almost normal after the transplant and no pain was associated with any part of it. Again, it seems that every person has their own unique experience. You will experience being tired, however. Patience is very important for every aspect of the transplant. I had four days chemo prior to transplant and then 13 days in the hospital following. You might experience similar feelings I had of water and food not tasting the same and loss of appetite. Get plenty of rest before going to the hospital because there are not many long periods of sleep. The nurses and doctors took very good care of me. I had caregivers (daughters and wife) who were great and made a huge difference staying with me in the hospital 24/7 to facilitate many small things that were important. It was a very doable experience. The transplant itself was uneventful and I slept through almost all of it. I wore my "street clothes" while in the hospital.

Be sure to ask questions here on the forum. I think we can cover most of the bases for you.

[traceyn11]

Hi Paul and Carole,
I can relate to you too. I am right behind you, just waiting for a donor right now. I found a wonderful mentor who is now almost 3 years post transplant from this site http://bonemarrow.org/ She has been great at answering questions and relating her journey to me. There is also a Facebook group that I belong to called Bone Marrow and Stem Cell Transplant Survivors Club. Lots of survivors share their stories and answer questions. I will say prayers for both of you and hope those links help.

Tracey

[GoodDay5150]

Hi Paul. I had a trans in 2011 for PNH. My procedure is called a mini-transplant because the amount of chemo and radiation used is abt 1/3 of that used in a standard procedure. My hosp stay was also reduced, two weeks in my case. To tell the truth, I was actually looking forward to the whole thing bcse my fatigue and anemia were making it almost impossible to do almost anything. I had symptoms for abt 5-7 yrs, at least, and they were becoming progressively worse, but I was not diag until Spring 2011. Obviously you will feel sick, and in my case very dizzy for a while afterwards, but there are meds to help with that. Your med staff is there to help, and I found my med staff to be great at answering my ques, offering advice, etc etc. I would also advise you to remain positive abt the whole thing, mainly bcse I honestly think that's a big part of recovery. Good luck and we are all thinking abt you.

Mario

[DanL]

Paul,

Good luck with the pending transplant! My hospital stay was close to 30 days, full ablative conditioning followed by allogeneic transplant from an unrelated donor 10/10 match. I developed minor gvhd within the first couple of weeks that affected my arms and head only - so basically skin gvhd. I had a pretty good first six months and then had more challenges with GVHD spreading and slight relapse that we have been treating with Vidaza. I received my transplant in February 2014, so I am now about 1 1/2 years post transplant. We are still working through the GVHD - skin, gut, eyes, but all pretty mild on the scale of things, meaning we have been able to treat the GVHD as it flares up and then scale back pretty quickly.

A positive attitude, getting up and out of bed and moving every day, eating whatever you can eat, staying entertained, keeping focus on healing are all keys to getting through. Don't let morning frustration keep you from having a great finish to the day. Some days it took until four o'clock to get into the shower and take my mile or two long walks in the hospital, but they always got done. persistence is important. Oh yeah, and take any and all pain killers as offered and needed even if it is not normal for you to do so. There is no glory in enduring any pain that you might encounter. Most of this occurs when you hit the trough and have no white blood cells left and then goes away once you start to engraft (about 7 to 10 days after the trough).

Remember that you will get through it!

[rar]

I had my transplant 347 days ago. Transplant was easy. 4 days for TBI and chemo pre-transplant and a week in hospital post transplant. 3 months in apartment near hospital. I started with 7 per week checkups that tapered to twice a week. Up to that point everything was easy. I attribute that to be in good physical condition and staying very active.

At day 100, the dividing line between acute and chronic GVHD it hit with a vengeance. I came down with c.diff, CMV and grade 3/4 GVHD. I spent 2 months in the hospital with out eating. They thought I was going to die. Due to reserve strength I made it through. Now I am in good shape again. 2 weeks ago I was taken off the last of my transplant medications and am suffering somewhat from prednisone withdrawal and some GVHD. In 3 weeks I go for my first re-birthday checkup.

Stay strong and exercise as much as possible. Everyone is different. I wish you the best success with your transplant.

Ray

[PaulS]

Thanks everyone for sharing their experiences, tips and information sources. Looks like my transplant date will be in mid July - my brother is a match but has some health issues and still needs to be cleared. I'm trying to stay focussed on a cure down the road - and hopefully not too many bumps in the road, although that is probably wishful thinking. I am very tired of being tired and needing blood transfusions. I feel good about my doctors and hope those also awaiting transplant do too - and we all have some good stories to share with very happy endings.
Best to all.
Paul

[SLB]

Hi Paul, I am now 2 years, 3 months post transplant. My story was a little different on here than most because my MDS transformed into AML and then needed 2 lots of chemo to achieve remission (also my bone marrow never regenerated after the chemo), and I only had an 8/10 match available. I had a reduced intensity transplant.. The doctor later said a full one would of killed me! Anyway, I agree with all the others.. The worst is when your counts are zero... The pain was unbearable even on major pain medication.. But everyday, I got up showered, and walked the halls. I still have ongoing issues with GVHD mainly eyes, mouth & thickening of tendons in wrist etc.. But I call them annoyances in the overall scheme of things! I am still on cyclosporine with no immediate chance of getting off of it. But it's doable.. And like Bailie said, I wouldn't be here today if I hadn't gone for it! All the best... Hope it all goes well for you!

[PaulS]

Hi Sharnie - thanks for sharing your experiences - Sounds like you had a rough ride - surviving over two years is a big - hopefully your GVHD will eventually abate - Seems like everyone's transplant and subsequent experiences are different. Funny thing is I'm feeling pretty good right now. Should be an interesting ride.

Thanks again

Best,
Paul

[johnwc]

Paul,
Very similar. Last Nov my CMML morphed into AML so I had to do the 28 day, 7+3 chemo conditioning. For me, it was easy. Lost hair, and tired but no problems.
Two weeks at home then...
On Jan 1st started the Flu/Mel chemo and had new cells on the 6th. Pretty good until about day 9, when bowels went wacky, mind got confused, and very very tired. Hiccups were my culprit.
Done on day 23. Not bad except days 9-18 but never vomited.

Today I've had no signs of GVH and still tired. Cognition is returning and so is strength.

Good luck,
John in Portland Oregon

[PaulS]

Thanks John, sounds like a reasonably bumpy road - glad to hear you seem to be doing well - hope you continue to progress.

[dfantle]

Paul and Carol, wishing you both all the best with your transplants. I'm 2 1/2 years post transplant & doing great. My transplant was non-myeloablative using stem cells from a matched unrelated donor., so I know this can be quite different from the myeloablative transplant. Mine went fairly smoothly, and other than really minor oral GVHD at 3 months, I really had no other GVHD issues until about one year post when I was mostly off my immunosuppression medication, and then mild.

The experience is different for everybody & truly the most important things to remember are to follow all your teams "rules" & to do your best to stay healthy while you're immunosuppressed. I strictly limited visitors, and really tried to do hands-free for pretty much everything using either gloves or paper towels to open or close doors or turn on faucets etc.(yes, even in my hospital room) & encouraged any visitors to do the same & use hand sanitizer whenever they entered my home or room. And when you return home to follow all the safety precautions for bleaching counters checking food temperatures etc.

I also never shook hands with anybody including the physicians - regardless of whether they just washed their hands. It may have seemed to be a little bit overkill, and I wasn't freaky about it I just didn't do it. I truly think these precautions helped me stay fully healthy while I was the most immunosuppressed. In fact I didn't even have a cold until 11 months post transplant, even though I did start eating out (being careful & following the rules) and was out in public starting at about four months post fairly regularly. Like me, you'll probably develop a sixth cense of really being aware when people around you wherever you are have cold or flu symptoms and be able to avoid them like I did.

[PaulS]

Hi Dena - thanks for the response and good advice. i'm glad you are doing so well - your story is very encouraging. I wish you continued good health!

Best,
Paul

[Joe C]

Good luck with your transplant and I can understand your emotions. I'm about 150+ days post transplant. I was diagnosed with AML in July 2014 after feeling sick for about 2 weeks at age 39. My WBC was 196! After 2 months in the hospital with 14 days (2 inductions) of chemo and near 0 counts I went home to await transplant news. They could not find a donor for me, best they could find was 9/10 so I had a cord blood/stem-cell transplant, even that was mismatched at 4/6.

I had a total of 4 rounds of chemo before my transplant. They used to send me home with 0 counts regularly after my chemo. Then just pretransplant 3 more days of chemo followed by 5 days of high intensity radiation. My counts all went back to about 0 for about 30 days, with a neutropenic fever between 100-103 each day. They did every test in the book but could not find the source of the fever.

Surprising enough I did not feel that bad and never took pain pills other than tylenol. About a week post-transplant I was throwing up due to the high radiation and chemo but it went away. Little to no GVHD, some skin rash and upset stomach at times but that was it. Plenty tired though. Went home after 35 days and stayed in a nearby hotel for 3 months. The transplant itself was easy, just sit back and in a few hours it's done.

I have been re-admitted to the hospital 4 times with fevers but went home each time 5 days or less. Cord blood transplants take a lot longer to get better and are more prone to infection but I'm feeling pretty good considering everything.

Before the transplant I was walking 4-6 miles per day up the hills of Seattle. In between chemos I was feeling pretty good. I gotta say I hated every second of being in the hospital, even though everyone was very nice and I knew it was the best place for me to be. One thing to remember is even when you feel bad, you are going to feel good again. While admitted, keep up your walks, eat as much as you can, watch tv, bring a laptop or something, stay connected to family and friends, and you can make the best of a bad situation. I'm not sure what your schedule is or what kind of transplant you are getting, but having been in the hospital most of the last year I can tell you it gets better. Good luck and stay strong.

[PaulS]

Thanks Joe for the encouragement and for sharing your story. Hopefully you are over the hardest part and on you way to good health. Its really helpful to hear about other's experiences. I really would like to get to the other side!

[italianburrito]

Originally Posted by Joe C

Good luck with your transplant and I can understand your emotions. I'm about 150+ days post transplant. I was diagnosed with AML in July 2014 after feeling sick for about 2 weeks at age 39. My WBC was 196! After 2 months in the hospital with 14 days (2 inductions) of chemo and near 0 counts I went home to await transplant news. They could not find a donor for me, best they could find was 9/10 so I had a cord blood/stem-cell transplant, even that was mismatched at 4/6.

I had a total of 4 rounds of chemo before my transplant. They used to send me home with 0 counts regularly after my chemo. Then just pretransplant 3 more days of chemo followed by 5 days of high intensity radiation. My counts all went back to about 0 for about 30 days, with a neutropenic fever between 100-103 each day. They did every test in the book but could not find the source of the fever.

Surprising enough I did not feel that bad and never took pain pills other than tylenol. About a week post-transplant I was throwing up due to the high radiation and chemo but it went away. Little to no GVHD, some skin rash and upset stomach at times but that was it. Plenty tired though. Went home after 35 days and stayed in a nearby hotel for 3 months. The transplant itself was easy, just sit back and in a few hours it's done.

I have been re-admitted to the hospital 4 times with fevers but went home each time 5 days or less. Cord blood transplants take a lot longer to get better and are more prone to infection but I'm feeling pretty good considering everything.

Before the transplant I was walking 4-6 miles per day up the hills of Seattle. In between chemos I was feeling pretty good. I gotta say I hated every second of being in the hospital, even though everyone was very nice and I knew it was the best place for me to be. One thing to remember is even when you feel bad, you are going to feel good again. While admitted, keep up your walks, eat as much as you can, watch tv, bring a laptop or something, stay connected to family and friends, and you can make the best of a bad situation. I'm not sure what your schedule is or what kind of transplant you are getting, but having been in the hospital most of the last year I can tell you it gets better. Good luck and stay strong.

Joe, You are one of the few people on his forum that has had a cord blood transplant. My dad is 64 and will be having a cord blood mini-transplant sometime in sept./Oct. if everything is going right. Did you have the full myleoablative regimen?