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lung transplant and bone marrow

kennethjude's picture
kennethjude
Posts: 3
Joined: Jan 2017

9 years ago I received a right lung after a pulmonary fibrosis diagnosis.  Early last year I was diagnosed with PTLD (lymphoma caused by my anti-rejection drugs).  Went through RCHOP chemo and then RICE chemo.   Now the Dr at Loyola is recommending a bone marrow transplant.  Has anyone else had this experience?

Ken

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

In 2015 I started the year with R-chop. In Aug of 2015 I started the 3 cycles of RICE. I was supposed to start SCT in Nov. I had the PET/CT scans then bone marrow biopsy. Something odd showed up in the bone marrow but the scans were clear. They decided to wait until Feb 2016. Had another set of scans, still clear. The marrow biopsy came up clear. We got as far as starting the stem cell collection.  My platelets kept dropping so they postponed it. Then another round of scans and a marrow biopsy. Again all clear. By June 2016 they changed their mind on the SCT.  The Dr felt I was doing very good and since there was no sign of disease I went on Rituxan maintenance. She said if my cancer did come back there will be newer treatments and drugs to use. 

Nov 2016 I was considered 1 year in remission. 

Part of me is relieved because SCT is scary. Yet if it was the only way to get to get the cancer in remission I would have gone forward.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3499
Joined: May 2012

Ken,

Numerous folks here have had SCTs, and I'm sure they will share their experiences.

I have not ever had a SCT or lung transplant, but do have fibrosis, both sides. The pulmonologists says it is stable (not worsening), and about 25% to 30% is fibrotic in the base of both. I also have controlled asthma. My oxygenization is usually in an ok range, maybe 95%, but drops at times to around 87%.  The doctors are not sure what caused my fibrosis, which was not present when I began chemo. I did receive Bleomycin, which can cause fibrosis, but the docs believe that breathing stomach acids from reflux was the more likely cause.

I am interested at what percentage a transplant becomes necessary ?  What percentage was your lung fibrotic ?

max

 

 

yesyes2
Posts: 592
Joined: Jul 2009

Hi Ken,  Sounds like you have had a very full plate.  I have not had a SCT but did have lymphoma caused by long term use of immune suppressing drugs to treat my RA.  I was very fortunate that I have not had a new recurrance.  I was diagnosed in Jan 2008, immune suppresing drugs were with drawn and I was treated with Rituxan for a year and a half.  My lymphoma came back, still PTLD, although I had what appeared to be a T cell involvement both times.  I was than treated with RCHOP and have been NED since March 2010.  You are the very first person I have seen on these boards with this form of lymphoma.  At the time I was diagnosed I was told 200 cases a year and than only in AIDs and lung transplant patients.  I know of a women on another board who has this disease also, caused by her doner SCT immuno drugs.  We are a small group of warriors.  Everyone on this wonderful board is a warrior.

I just wanted to say hello and wish you the very best.

Leslie

Sal0101's picture
Sal0101
Posts: 132
Joined: Sep 2015

Ken,

i had a SCT Sept. 27th, 2016. My journey started in the summer/fall of 2015.  I was diagnosed with DLBCL. Started R-Chop and methotrexate in September.  I was considered NED by February 2016! That was a great day! Unfortunately I relapsed by June, started R-ICE in July, was again considered in remission.  It was highly recommended that I have the SCT The minute I started R-ICE.   I met with 2 different teams and chose a team at the only NCI rated hospital in Wisconsin. So off we went to Madison for 3 weeks.  I had BEAM and then an Autologous transplant. 4 months tomorrow!  I'm doing pretty good.  Have most of my energy back. It does take a lot out of you, but is doable!  I learned to nap!!  I can honestly say that I am scared everyday, considering I relapsed the first time so quickly and it's only 4 months, but I just have to deal with that.  

Sharon

 

pdxgal
Posts: 2
Joined: Jan 2017

Sal0101-

I am scheduled for a SCT in April, and am feeling very anxious about it. I will be having BEAM and an autologous transplant as well. Any suggestions on how to get through this?

 

Sal0101's picture
Sal0101
Posts: 132
Joined: Sep 2015

Hello pdxgal, 

Im trying to think back on what I did to get through my SCT.  It's only been 4 months and I'm feeling great now!  I was actually feeling pretty good about 6 weeks after. That could be your first thing to look forward to. Fatigue was my biggest problem.

I was lucky that the team was able to retrieve the needed stem cells in one sitting.  I was worried because I knew there were others that had trouble. 

Then I just went with the flow knowing I didn't have much choice. My Lymphoma was very aggressive. about 5 days after BEAM I started feeling crummy. My team warned me and they were spot on. No surprises. They were generous with the Zofran, Tylenol and numerous other meds, vitamins and minerals!

 i didn't have any mouth sores but a few down in my throat.  Before the last BEAM drug they had me suck constantly on ice chips. ( I think Paella also gave me that trick) 

i lost my appetite, which was pretty much the first time. My SCT onc. Told me I would and he wasn't worried if I didn't eat for a few days, but that would be it.  I still forced myself to eat!  Kellogg's sugar Frosted Flakes For every meal And protein shakes whenever I wanted them.  i was in the hospital for 18 days.  Every morning the nurse put a check list on my bulletin board. 1 shower, 3 meals, 3 walks. I was to do all of them each day, and for the most part I did.  Missed a few walks, that's about it.  My husband stayed in a nearby hotel and took turns with my daughter being there with me. ( although there were times I just had to get rid of them!!) 

I was home for about 36 hours, spiked a fever and ended back in the hospital for another 5 days, luckily I could stay near my home.  nothing came out of that, I came home and slowly started walking again, first half way around the block, then all the way and now 2 miles! 

YOU CAN DO IT!

Sharon

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