Acute Gvhd My Mom's Story

[tamara669]

Hi, I am new here. My mom was diagnosed with CML a year ago February.
Her doctor's said she had about 2 years and there is no cure. The doctors told her she could have a bone marrow transplant which could provide a possible cure. So she decided to go for it. Because she had no relatives that could donate stem cells they did find a unrelated donor. The doctors were very positive because the match was a strong one.

She had her transplant February 13th. and was release to the hospital out patient location 2 weeks later. Everything was going well until the Easter weekend when she developed diarrea and not just a bit but liters of it.
We found out she developed GVHD of the gut. They did not have a lot of progress with the standard treatments. She now has steroid resistant GVHD grade 4. To say the least this has been extremely stressful for all involved.
2 weeks ago she had a bad seizure. They believe was from the cyclosporine she was taking.
We were told she has only a 20% chance now of making through this.
I am just wondering if anyone else out there has had experience with this.

thanks

[Lulu]

Hi Tamara

Very sorry to hear about your mother, GVHD sounds absolutely awful. I do not have direct experience of it myself but have done a lot of research as I have MDS and gut problems, and trained in nutrition.

Firstly has she been tested for Bile Acid Malabsorption? This is a little acknowledged condition which is a factor in Chrohns, IBS, and can also be a complication of BMT
http://onlinelibrary.wiley.com/doi/1...11.09014.x/pdf
http://bmb.oxfordjournals.org/content/92/1/79.full
It is potentially treatable with Bile Acid Sequestrants (drugs that bind the bile acids)

Also get her checked for pancreatic insufficiency. Again, this is treatable.
http://www.nature.com/bmt/journal/v2.../1702769a.html

People with gut problems particularly if BAM is involved are likely to be deficient in many vitamins particularly the fat soluble ones A,D,E,K.
(Also see the other thread about Vitamin K/D, which may be relevant)
Is she being seen by a dietician?
I don't know about the USA but here in the UK there is precious little attention given to nutrition by the medical profession. If she can eat herself, I would as a start get her off all gluten, lactose, and anything with high fructose corn syrup in it.

I would also start on some very strong probiotics.
These http://www.vsl3.com are the strongest you can get, but are prescription only in the USA. They have been proven to cut the mortality rate from infections like C-Diff, which is a major threat to BMT patients.

Good luck x

[MDSPerth]

Tamara, I feel so very sorry for you predicament. I am currently witnessing my nearest and dearest suffer incredibly with acute GVHD of the skin. It is horrendous and makes one feel so helpless. See my post on transplants.

[tamara669]

Hi, I thought I would write an update. My mom died from ACUTE GVHD June 19th 2013. As I mentioned before my mom had acute gvhd of the gut. She ended up going septic in June. The did manage to get the infections under control. Days leading up to that day were good days we actually thought she was getting better. After she went septic they did not think she would pull through but she did. 2 weeks after that they decide to end all treatment as the next infection would be worse. I look back at everything she went through and I wonder if it was worth the risk,or just a death sentence. I spent many of a night reading medical journals and all of the cases I read end with death and survival rate was very poor. They tried every drug you could think of, Including traculimus and campath. Campath was the only drug we saw improvement. But with campath the maximum a doses you can receive is 4. My mom had 4 shots.
The hardest part of this journey was watching her in pain. During this time she always seem to look at the bright side. Even the nurses at princess Margret Hospital were surprised how good her spirit was even after she was given only 2 weeks. she was transfered to a Hospice the 19th of June. During this time she was able to do all the things she wanted to do including seeing family friends and attend BBQ sometimes you wondered if she was sick. With the drugs out of her system her gut seem to settle down. That was a big surprise. But then the gvhd showed us what it can do. I invaded her mouth and stomach. The sores were horrendous her mouth was black and had barnical looking things growing inside. She gradually got weaker so she could no longer see vistors. 2 days before she died she called me and we talked for an hour. That would be the last time we would talk. The next day I got the call to come. She talking in the morning and told everyone how she was ready to leave us and how much she loved us. I never saw her awake. I arrived to late. She died 5:50am the following day. She was in no pain. Which I am grateful. I want people to know no matter how good the match is the risk is very real. My mom had the best possible match and it still rejected.

I wish she never had that transplant she was cancer free at the time of her death so it did work but at what cost ? She was given 2 years at the time of her transplant. I wish we still had that time. So please really think about the risks and ask about actual survival rate you maybe surprised by what you learn. I just feel it is important for others to read my mom's story.

With Kind Regards

[Cheryl C]

I am very sorry to hear of your mother's death, Tamara. My deepest sympathy to you and family.

Thank you for that brave, wise advice, Tamara. It must be very difficult to put into writing what you have experienced. My brother is a perfect match, and I always have in the back of my mind that if my condition deteriorates again there is a BMT option available. However I think that specialists should enlighten us more graphically to the possible effects of GVHD.

[MDSPerth]

Tamara,
You have had the courage to come on here and write what I have so been thinking. Paul went into his transplant with the strongest possible match (I understand better than 10/10 - it was an 11/12), but on day +60 was taken suddenly by an infection. Although ultimately it was the infection (Pseudomonas aeruginosa) that took dear Paul, more importantly was the servere GVHD - grade 4 - of the skin, and possibly the gut although not confirmed that was the onset of his demise.

GVHD of the skin is the cruelest thing I have ever witnessed. It was just like witnessing someone received third degree burns, but as it was pointed out to me at least when the burns are coming from a fire the person can be removed from the heat - in the case of GVHD of the skin, the burning is coming from inside and it is very difficult to extinguish the source of the fire.

Whilst on this forum, I have also seen another prominent figure - Cam - who has lost his life during his SCT due to severe GVHD of multiple organs - he too had an excellent match.

The very cruel steroids (methyl prednisone) on top of the cyclosporin they use to supress the immune system even further during the onset of severe GVHD compromises the immune system and the patients are left wide open to opportunistic bugs.

In Pauls instance the onset of his infection was so swift that he would not have seen it coming, so at least he passed away with HOPE of recovery. This however does not help the loved ones he left behind.

I fully understand that a patients prognosis without the transplant are not generally great, but neither are the chances of a full recovery heading into tranplant. Still it seems that so much importance is made of how good the match is.

I wish everyone well heading into transplant, because there are positive stories out there, but please be aware that for every positive story, there is a greater percentage that do not have a positive outcome.

I truely believe at this stage that every stem cell transplant recipient is a medical experiment, and if something can be learnt from every patients outcome then perhaps one day ultimately the success rate will be far greater!

For the rest of my life I will live with the question - should Paul have gone to transplant or should he have made the most of the time he had without a transplant. At the time of transplant he was asymptomatic and living a full life with the help of growth factors (his very efficient bandaid).

[Birgitta-A]

Dear Tamara,
How sad with your mother - GVHD can be a terrible complication. She was so brave and you did everything to help her.

When I got my dx I was 67 yo and too old for a SCT (in Sweden) so I never had to consider that treatment. I was thankful because as far as I understand it is a risky treatment for MDS patients.
Warm regards
Birgitta-A

[Lbrown]

I'm so sorry to hear about your mother Tamara.

Thanks for posting.

Deb

[LizR]

Tamara,

I'm so very sorry for your loss but thank you so much for sharing your story. It's only through information like your mom's that we who are deciding whether a BMT is the right choice for our family members can make a more educated choice. In my husband's case, the doctors act like it's a definite to go to transplant immediately. When he wanted to try Vidaza and Aranesp first they were shocked. Why wouldn't you jump at the chance to prolong your life with a transplant and the only chance for a cure? But they sometimes don't give the complications a heavy enough weight in the decision. All the research in the world doesn't show the personal side like these posts.

In the short time I've been on this forum I have seen good outcomes but watching Paul, Cam and others like your mom has kept our minds open to other options. Like Sandi said so eloquently, I don't want to wonder after the fact if we made the wrong decision in rushing to transplant rather than enjoying the time we have now.

It's a brave thing you all do sharing your experiences. Thank you and know we are thinking of you. I think your mom would be proud of you in sharing her story and helping others.

[Neil Cuadra]

Tamara,

I'm sorry you lost your mom and for all that you and your family have been through. It was very generous of you to let us know what happened. When we lose someone so dear to us, I think it's the long-term memories that sustain us, and I hope that's the case for you.

Originally Posted by MDSPerth

For the rest of my life I will live with the question - should Paul have gone to transplant or should he have made the most of the time he had without a transplant.

Sandi,

We all tend to second-guess ourselves but I don't think you should. You and Paul made the best decision you could based on what was known, and your determination to keep up the fight. There's still too much that's unknown about treating MDS, with or without a transplant, but you gave Paul every ounce of your love and support. He was so lucky to have you with him.

[angies37]

Hi Tamara

I was reading your posts about your mom and her battle with GVHD and it sounds like exactly what is going on with my dad. He had his transplant on February 12 was discharged on March 11 and returned back to the hospital on March 17. He has been there ever since and it suffering from Stage 4 GVHD of the gut. It has been an absolute nightmare. He battled some infections, has been on all types of meds, IV nutrition and his doctor still has not been straight with us. He is trying to eat again and his diarrhea has skyrocketed back up to five liters a day. When I read your post, all I can think of is what a mistake it was for my dad to have the transplant. He had CMML-2 and was given 4 months to live and supposedly had a perfect match. (Unrelated donor). I am so scared of what the next few weeks has in store for him.

[JenB]

Hi Tamara,

I've never posted anything on a forum before in my life, but felt compelled to when reading this thread. I am unsure whether I should be starting a new thread with this but hopefully giving some background is ok to do here.

My dad died 2 weeks ago at age 58 after a brave battle with MDS which started 2.5 years ago. My dad had never had as much as a chest infection in his life before and had been an avid golfer, scuba diver and Krav Maga student. As none of us had heard of MDS before we didn't really know what this meant for our dad. His MDS was deemed to be low risk so the watch and wait approach was taken, with blood transfusions when needed. Unfortunately, my dad started to become more unwell with each transfusion, developing arthritis throughout his entire body and vasculitis too. 5 consultants were left scratching their heads as to the cause of this, as they had not seen such symptoms before. My dad went from playing sports to needing a wheel chair in the space of about 6 months and was in considerable physical pain. Steroids did the trick in getting these symptoms under control but, following a few bouts pneumonia, it was clear that my dad was a sitting duck, with it only being a matter of time before he would catch an infection that he wouldn't recover from. A referral to a BMT consultant followed and he was deemed unfit at that time to undergo the procedure. Initial chemo didn't help to manage my dad's symptoms but vidaza (what an amazing drug) did the trick and my dad regained so much in terms of quality of life. Ultimately, however, how long this would last was speculative and a return to arthritis and vasculitis was envisaged, with no BMT option open to him by that stage. The vidaza was therefore used as a means to get my dad well enough to undergo a BMT given his age. Unbeknownst to my sister and I at the time, his counts were becoming less stable, indicating a serious progression in his MDS, also confirming the need to quickly proceed with a BMT if this was the desired route.

My dad received a transplant on 15 January 2015 from a non-sibling donor - my bloodline must be common as muck, as we were very lucky to have a number of potential suitable donors! A match described as better than 10/10 (12/12) was chosen. Everything was going well to start with but fluid appeared to be building up on his stomach and he had difficulty with nausea and vomiting. He thankfully made it to my wedding on 15 March but had to have 12 pints of fluid removed the week after, mostly from his stomach and from his legs too. On 28 March he was re admitted to hospital and his condition deteriorated as a result of acute GVHD. He had significant vomiting and diaorreah (excuse my spelling), and the fluid kept returning to his stomach and ankles, causing the skin to split with the swelling. His stomach and bowel stopped working and his bowel perforated. His stomach was ulcerated, his oesophocous inflamed and his tongue black from infection. He was unable to move in his bed, requiring a team on nurses to roll him in his bed when needed. No promises could be made for an improvement in his mobility. His condition was described to us as critical, as you might expect from the above description. The doctors continued to fight the GvHD with various treatments, including exposing his blood to UV light to disable the cells attacking the body, returning the blood back into his body. The liver biopsy shed no light on the fluid retention. My dad sadly developed peritonitis, caused by the natural bacteria in his own gut and he passed away quickly and peacefully with his family by his bedside.

I'm still trying to come to terms with the disappointment that the BMT didn't work. However, I'm in no doubt that it was still the right route for him.

You can only make decisions based on the information available to you at the time. I think that as much information as possible should be given to patients on potential outcomes of any procedure and I know that my dad was given this.

I think that there is no right or wrong answer as to whether a BMT is the right route for any patient. It is really for the patient to decide the right course of action for themselves personally, since attitudes to risk will vary.

Unfortunately, BMT is unpredictable and, as in my dad's case, a great donor match does not guarantee success. Did my dad make the right choice in going through with the BMT, even though he might still be here today, for a bit longer, with Vidaza? Absolutely. My dad was a very proactive person and I know that the "watch and wait" approach was frustrating for him. If my dad had not opted for the BMT, we would have been faced with his death at some point in the not too distant future. Doctors cannot predict life expectancy with complete accuracy and any figure given on this would be presuming no major infection was contracted in the meantime. "What if" questioning is only natural in these circumstances and for me, personally, I find it a comfort to know that all possible treatment options were undertaken for my dad and that he had complete control over those choices. I must respect those choices. If my dad had not had the BMT, when he did eventually pass away, we would all be wondering "what if" he had had the BMT, maybe he would be one of the success stories? This would be a worse burden to bear, not only for us as a family but for my dad during the process of that decline.

To those of you undertaking a BMT or supporting someone though a BMT, I wish you every success, as it can indeed be a successful treatment. For those supporting someone experiencing complications with the BMT process, I wish you all the best in fighting these and please don't best yourself up about the treatment choice made - this does not invalidate the reasoning which led you to taking the chance in the first place.

Jen B

[angies37]

Hi Jen,

Thank you for sharing your dad's story. My dad is Day 107 post transplant and still struggling with Stage 4 GVHD of the gut. He has been in the hospital since St. Patrick's Day.

My dad sounds similar to your dad. He was in great health his entire life and an active person . The CMML2 took all of us by surprise back in October

I am not sure what will happen to my dad. His diarrhea has subsided from 8 liters in March to just under 3 liters but he is is on constant discomfort in his stomach.

Reading your post helped me try and get a handle on the "what ifs".


Angie

[JenB]

Hi Angie,

I'm glad that explaining my situation has helped - very little seems to be written in the way of "real life stories" on the complications surrounding BMT, in comparison with the success stories which are understandably published frequently to help encourage new donors, funding for new research etc, which needs to be done for the success rate of BMT to be improved for current/future patients.

I wish you all the best for your dad with his ongoing treatment.

JenB

[sbk007]

Originally Posted by JenB

Hi Angie,

very little seems to be written in the way of "real life stories" on the complications surrounding BMT, in comparison with the success stories which are understandably published frequently to help encourage new donors, funding for new research etc, which needs to be done for the success rate of BMT to be improved for current/future patients.

I wish you all the best for your dad with his ongoing treatment.

JenB

I'm sorry you had to go through all that and I agree the "what if" works both ways and you eloquently stated that. However, You twanged my funny bone with that statement. If you've been here long enough you'd see that way to many have outcomes are much like what you observed and there is more than enough written about the complications. The success stories are far and few but always welcome. Once someone makes the decision to go to transplant they most always know what the risks are. The point is that there are people that DO have successful transplants and focusing on the success is a lot more constructive than focusing on failure. Keep in mind that like your dad for many its the only CHANCE at prolonging your life as the alternative is usually hospice.

[JenB]

Thanks for that - absolutely, it's a chance at a cure, which on the balance of risk was considered a good option in our circumstances. I'll confess that I've not been long on this forum as many of us won't have been and, you're right, there are lots of real life stories on here which were helpful to read when I found the forum - as such in my previous post I wasn't referring to this particular forum, I was referring instead to the understandable focus on success stories from other sources of information which people often read first eg bone marrow donation charity websites. As stated in my original post, my dad will have made an informed decision based on the risks detailed by his consultant, so no concerns re: information on that front. Hope this helps to clarify.

[bailie]

I have an interesting situation in that I have a transplant coming up while feeling totally normal. I have not felt "sick" and will be feeling great going into the transplant. It makes the decision difficult in some ways.

[sbk007]

JenB, You're right. Those sites tend to emphasize the successes. Similarly hospitals that perform open heart surgeries, back surgeries, you name it display the happy stories, I think that's just the mentality of our culture and the way we advertise. Your dad and your family made the right decision.

[Dan92]

Hi, my dad passed away January 3rd, 2016. It's still so crazy and so hard. He was only 52. I wanted to just go through his story.
He was diagnosed with AML in November of 2012. He went through 2 rounds of chemo and still did not go into remmision so he needed a BMT. He had an unrelated 10/10 match BMT in March of 2013. He was in the hospital for 8 weeks and it took him over a year to really leave the house, aside from going to the hospital. He got himself back into shape and really looked great. You would never know he was sick. After almost 2 and half years in remission, we found out he relapsed over the summer. We went through our options and met with many doctors. Once the cancer came back it moved quickly. He needed a second BMT. We used a different donor for the simple reason that the first on didn't work (that is our only regret now, maybe we should of used the original donor). He checked back into the hospital at the end of Septmeber for 3 weeks of Chemo and then he was home for 3 weeks and then back to the hospital for his 2nd unrelated 10/10 BMT. He had it done on November 11th, 2015. He was doing well for 2 weeks. Then he started having really bad diarrhea. They gave him steroids, but they didn't work. As some of you know if the steroids don't work, there is less than a 10% chance of survival. On December 1st we found out it was stage 4. They tried another medication and then photopheresis. He fought off pneumonia and a couple infections. Then all those liters of diarrhea turned into blood. The GVHD of the gut wore away at the tissue of his bowel which caused really bad bleeding. There was no way to stop the bleeding. We just had to pray it would stop some how, but we knew we were at the end. They told us he could die at any moment. That happened on a Friday night. Almost a week later on Thursday his breathing started to get really bad. The doctors took me and my family outside the room and told us he had started the dying process. This was very strange to us because my dad was speaking to us the day before. After weeks of almost eating nothing and saying nothing he had started speaking in full sentences. He asked for my mom and me and all my siblings. We each spoke to him and he told us that he loved us. It was some kind of surge of energy. In our minds we convinced ourselves that he was getting better. That's why his breathing getting worse was an even greater shock.
He didn't look like himself. He bad tubes everywhere, an oxygen mask, the inside of his mouth was black and falling apart. His body was destroying itself from the inside.
He made it until Sunday, when he passed away around noon.
It's such a shock, but it helps me to hear other people's stories who went through similar situations. I helped take care of my dad for the last 3 years. I learned a lot about this horrible disease and talking about it makes me feel like I'm still fighting for him.

[Neil Cuadra]

Dan92,

I'm so sorry that you lost your dad, especially when he was only in his 50s. It's very gracious of you to post about it.

It's hard to read about people who don't survive and those they leave behind, but it helps us learn, and it's part of the reason for discussion boards like this one.

I don't think you should second-guess the decision to use another donor. The second donor was also 10/10, so it made sense to use a different donor to try to get a different outcome. A relapsed and fast-moving cancer put your dad in a much harder position, no matter who the donor was.

I hope your dad made the most of those 2+ years in remission, even through he and the rest of your family deserved more time together.

When he last talked to you, do you think your dad knew inside that he had reached the end? I've heard similar stories where somebody who is failing somehow knows when the time comes to say goodbye, and pulls out the strength to do it.

[Dan92]

Neil,

Thanks for the reply.
He passed away on a Sunday, but the last day be was conscious was that Thursday before. On that day, when his breathing was bad, he said that he thought he was dying. We felt so scared for him that he knew what was about to happen. He felt what was going on in his body. The day he was really talking to us was the day before so I'm not sure that he knew then.

[Cheryl C]

My deepest sympathy Dan92. Thank you for your detailed account.

We don't often hear about the really serious cases of GVHD - maybe because people are too sick to post or don't want to scare us. Sometimes we can get the impression that the majority of BMTs are successful long term, which is definitely not the case. We need to hear both sides of the story in order to make an informed decision.

Your Dad was still young and by making the courageous decision for BMT he was doing his best to survive for you all and I greatly admire him for that.

[Dan92]

Cheryl,

Thanks for the reply.
My dad's case happens to be very rare though. This only happens 15% of the time and the way it happened to him was even more rare. My father had one of the best doctors in the world in this field. He has been doing this for over 30 years. He said my father's case of GVHD was one of the worse he has ever seen.

My dad wanted to do whatever was necessary to live. This was his best chance. Every single case is so different, that's what makes it a little scarier. I'm sure you hear all these stats about relapse and so on, but every person is there own person. Every body is so different. These stats are so general. I think it's important to have a doctor you trust and to ask other doctors opinions too. Everyone told us this was the best plan. He was one of the rare cases of dying from acute GVHD.

[Dan92]

Cheryl,

If I can ask, your blast count dropped from 10% to 2% without treatment?
I apologize if this is too personal a question.

[Cheryl C]

Dan92 - I don't mind you asking at all. I hope I don't offend anyone when I tell you what happened.

I was all ready for transplant, having come through all the pre-testing, when I began to feel very uncomfortable about the process. My transplant haematologist had fully informed us of the risks - basically (approx) 30% chance of permanent success, 30% of death as a result of the transplant (GVHD, etc) and 30% not successful and back to square 1. Before having my next biopsy I prayed that if I wasn't meant to go for transplant God would reduce my blasts to safe levels. That is what happened. The haematologist was amazed and had the results checked 3 times. So far I've remained stable. I feel I am on "borrowed time" and responsible to live my life in gratefulness.