Normal labs other than decreasing plts?

[italianburrito]

A short back story.. my dad had his transplant back on Nov 11 2015 and has had normal labs as of a month ago. His plts have slowly been declining with today being the lowest at 45,000. Hgb 10.0 and WBC 3.0. Has this happened to anyone before? The Dr. said his slide looks good (no dysplasia or blast) and doesn't know what is going on. He is going to Duke this weekend to get some more answers. Any thoughts or opinions would be appreciated.

[rar]

By itself platelets at 45 is not unusual. Since my transplant in Jul 2014 my platelets averaged 54 with a low of 11 and dozens of readings below 20. until 6 months ago I was steady at 70 for several months. Then it jumped to 140 for the past 6 months. The cause of the sudden increase was a blood clot that ran from my groin to below the knee. This is not the recommended way to increase platelets.

Ray

[PaulS]

Hi - from what levels did the platelets and Hgb decline and over what period of time? The numbers in isolation don't seem too bad, especially with a haplo-chord transplant which takes a little longer anyway. My numbers at the same point in your father's recovery were about the same. Platelets tend to jump around a bit. Has he changed medications? Any GVHD? How's he feeling otherwise? Its good he's getting out by the transplant specialists - hopefully just a bump in the road.

Best wishes,
Paul

[italianburrito]

Originally Posted by rar

By itself platelets at 45 is not unusual. Since my transplant in Jul 2014 my platelets averaged 54 with a low of 11 and dozens of readings below 20. until 6 months ago I was steady at 70 for several months. Then it jumped to 140 for the past 6 months. The cause of the sudden increase was a blood clot that ran from my groin to below the knee. This is not the recommended way to increase platelets.

Ray

Hi Ray, His plts were at a high of 108 at the beginning of April and has been steadily declining and has leveled out at 48. They did a biopsy yesterday to see what's going on. The doctor said it could be a virus or the MDS is back. Did they do a biopsy on you when your plts went down to the 20's?

[italianburrito]

Originally Posted by PaulS

Hi - from what levels did the platelets and Hgb decline and over what period of time? The numbers in isolation don't seem too bad, especially with a haplo-chord transplant which takes a little longer anyway. My numbers at the same point in your father's recovery were about the same. Platelets tend to jump around a bit. Has he changed medications? Any GVHD? How's he feeling otherwise? Its good he's getting out by the transplant specialists - hopefully just a bump in the road.

Best wishes,
Paul

The level was 108 beginning of April and yesterdays lab it was 48. Last week it was 45 so not too much lower. He had a haplo transplant from my brother in Nov. 2015. They reduced his anti-fungal and decreased his tacro last week. He feels fine! No unusual fatigue in the past month. We get the results tomorrow from the biopsy. I hope its just a slight bump in the road. The doctor thinks it could be a virus or the MDS is back! UGH waiting is awful.

[PaulS]

Hi - Did you get the biopsy results? Is he having any GVHD - did they drop the tacro because he had high levels in his blood other reasons? My platelets dropped when I had GVHD and did not start to rise again until after it was treated with Rituxin - It sounds like he's four months post transplant? I only now reached 100+ seven months post transplant. The main thing is how his marrow looks at this point- glad he's feeling well. Sorry you all have to go through this -I'm sure its stressful - but hoping its not too big a deal.

Best,
Paul

[rar]

No BMB for low platelets. They transfuse for low platelets which can be from 8 to 15 depending on the local protocol. Below 10 there is risk of internal bleeding.

Ray

[italianburrito]

Originally Posted by PaulS

Hi - Did you get the biopsy results? Is he having any GVHD - did they drop the tacro because he had high levels in his blood other reasons? My platelets dropped when I had GVHD and did not start to rise again until after it was treated with Rituxin - It sounds like he's four months post transplant? I only now reached 100+ seven months post transplant. The main thing is how his marrow looks at this point- glad he's feeling well. Sorry you all have to go through this -I'm sure its stressful - but hoping its not too big a deal.

Best,
Paul

Paul, We will be getting the results later today. He did not have any GVHD at the moment and I believe he reduced it last week to err on the side of caution if it is a relapse. He's about 5 months post-transplant. About a month ago the doctor stopped the Tacro for 5 days because his kidneys and liver were taking a hit and that's when we noticed the plts dropping and petechial (small bruises) on his legs! I hope there is a correlation with that. I will update as soon as a hear something.

[PaulS]

I'm sure the waiting is nerve racking - I'm hoping for the best.
p

[italianburrito]

Sorry it took so long to update on the biopsy results but we FINALLY got them back yesterday. Unfortunately they are not what we were hoping for. Originally we thought it was just a severe HHV6 infection (2 million copies to be exact in the marrow!!) but it also showed an early relapse of the disease. His blast count is 7% at the moment and some of the blast cells have the same clone as when he was first diagnosed. To say we are devastated is an understatement.

He will be going to Duke next week to see about doing a donor lymphocyte infusion from my brother. Dr. M thinks that possibly the virus is the culprit since a severe infection can result in graft failure. The cellcept has been stopped and reduction of the tracrolimus has begun to prevent further relapse and hopefully start some GVL effect. He cant do anything yet until the viral infection is under control which is a 2 week course. He has one week left to go. Has anyone gone through a DLI?

[bailie]

I'm sorry for your father's situation. It sounds so similar to what mine was. I had an infectious lung disease at about Day +210. They immediately took me off tac and prednisone and put me on Vidaza. My blasts went up to 33 percent and I went from 100 percent donor down to 85 percent. After two cycles of Vidaza I was back to where I was before the infection to 100 percent donor, no genetic mutations and feeling well. Of course we don't know how long it will last, but so far it has been 11 months of remission.

I think (following Greg's lead), that a person's telomeres become vulnerable during an infection and can cause hopefully temporary susceptibility in a person's chromosomes. My choices were the Vidaza or a DLI. We wish you the best outcome.

[italianburrito]

Originally Posted by bailie

I'm sorry for your father's situation. It sounds so similar to what mine was. I had an infectious lung disease at about Day +210. They immediately took me off tac and prednisone and put me on Vidaza. My blasts went up to 33 percent and I went from 100 percent donor down to 85 percent. After two cycles of Vidaza I was back to where I was before the infection to 100 percent donor, no genetic mutations and feeling well. Of course we don't know how long it will last, but so far it has been eight months of remission.

I think (following Greg's lead), that a person's telomeres become vulnerable during an infection and can cause hopefully temporary susceptibility in a person's chromosomes. My choices were the Vidaza or a DLI. We wish you the best outcome.

Bailie, If you disease relapses will you do a DLI? Why did you chose chemo over a DLI? Just curious as I would imagine they will be giving my dad options going forward.

[bailie]

Very good questions. If my AML relapses (again) we don't have an answer yet. It might depend on what mutations are involved and my age and health at that point. My situation of a relapse to AML+Philadelphia chromosome (9;22 translocation) is very rare and almost all (from all the studies) people die within 10-12 months or much sooner. I am going on 15 months and feeling great (golfed 18 holes yesterday and pulled weeds for an hour first thing this morning). I have my 17th BMB on Monday, so like all of us, we will be eagerly awaiting the results.

We talked at length about Vidaza or the DLI. We decided to try Vidaza first because I responded so well with it prior to the SCT. It immediately worked well (after the first two cycles) so we continued for 12 cycles. I have been in complete remission for the last 11 months. But (there seems to always be a "but" with these diseases) as we all know things and challenges are now a major part of our lives. I think the challenges can make us better people.

My relapse (AML +(9;22)) put me "off the flow diagrams so we are pretty much "winging it now". My doctors have reached out to other locations on several occasions for answers.

Your questions are good and I completely understand your thoughts at this time. Thank you for asking.

[italianburrito]

Originally Posted by bailie

Very good questions. If my AML relapses (again) we don't have an answer yet. It might depend on what mutations are involved and my age and health at that point. My situation of a relapse to AML+Philadelphia chromosome (9;22 translocation) is very rare and almost all (from all the studies) people die within 10-12 months or much sooner. I am going on 15 months and feeling great (golfed 18 holes yesterday and pulled weeds for an hour first thing this morning). I have my 17th BMB on Monday, so like all of us, we will be eagerly awaiting the results.

We talked at length about Vidaza or the DLI. We decided to try Vidaza first because I responded so well with it prior to the SCT. It immediately worked well (after the first two cycles) so we continued for 12 cycles. I have been in complete remission for the last 11 months. But (there seems to always be a "but" with these diseases) as we all know things and challenges are now a major part of our lives. I think the challenges can make us better people.

My relapse (AML +(9;22)) put me "off the flow diagrams so we are pretty much "winging it now". My doctors have reached out to other locations on several occasions for answers.

Your questions are good and I completely understand your thoughts at this time. Thank you for asking.

As always Bailie, Thank you for your wisdom and kindness with your responses. My dad did respond extremely well with the Vidaza but I don't know what the options are. I have been reading research about Vidaza and DLI and it sounds promising. He has a Duke appt. later in May to see what to do. My dad is a fighter and is up for anything!!

[bailie]

Our decision for trying Vidaza first had much to do with GVHD. Since we knew that I tolerated the Vidaza well without GVHD We thought that it should be the first approach for remission. The DLI brings GVHD into the picture. The positive side of the DLI is that it can have an influential effect on "graft versus leukemia" (GVL) and GVL is what we are always searching. I will be interested about your conversation with the doctor. I am sure your Dad really appreciates everything you have done for him.

[italianburrito]

So my dad has started induction chemo yesterday (cytarabine/idarubicin) for his relapse and will be receiving a DLI from my brother in a couple of weeks during his nadir. The doctors decided to do the induction chemo rather than Vidaza due to catching it early and hopefully "cleaning up" what is left from the cancer and boosting his % to my brother. The blast in his marrow is around 7% at the moment and normal cellularity. No dysplastic changes to the cells and 1% blast in the circulating blood. They wanted to be as aggressive as possible to hopefully still cure him. Dr. M considers this a salvage approach. I will be emailing the doctor from Duke today to see where chimersim was before this induction so we can have something to go by.

My dad has been dealing with a nasty HHV6 infection ever since his transplant so that makes me think that this virus has something to do with his relapse... His new immune system never had a chance to fight off the cancerous cells. He will still continue to receive gancyclovir for the infection and will probably get maintenance doses.

I also spoke to the doctor about doing some sort of maintenance chemo AFTER the DLI to make sure this crap doesn't come back. I keep hearing that Robin Roberts had Vidaza for 1 year after the transplant but I haven't seen that documented anywhere. I haven't seen too much data regarding this so if anything has any info that would be great.

[PaulS]

Hi - I have spoken with my doctor's (also Robin Roberts) about doing Vidaza maintenance, although not recently - I think we've been waiting for my counts to get to normal and to maybe get off some of my medications -In my case I did not respond to Vidaza in the first place, so its not clear if I'd even be a candidate, of if I'd want to try it. From what I understand this is a fairly recent alternative and there is not much data as to its long term effectiveness. I think if the patient has responded to Vidaza, the argument would be stronger for trying it as maintenance. I don't think they've been doing it long enough or with enough patients for there to be too much long term data.

I understand the idea is gaining interest - and your doctor should be able talk to others who are trying it if they are not using it at his/her transplant center. Good that you are discussing it with him. I know they are studying it at Memorial Sloan Kettering in NYC - and I think also at NY Presbyterian - Weil Cornell. Not sure if is in a formal clinical trial.
Best wishes,
Paul

[italianburrito]

Just wanted to thank everyone that has joined me on the journey from the beginning with my dads diagnosis of MDS back on April 9 2015. He passed away July 1 from this awful disease surrounded by the people he loved so much. After the DLI he experienced graft failure which gave the cancer cells time to essentially take over and end his life. I am extremely sad but I know he received the absolute best care at Duke and his home Doctor.

The stem cell transplant in my mind was still a success since he was able to see my daughter born and know that my sister graduated with a doctorate in chiropractic medicine. One of the last things he said was for us not to worry about him and that he will be ok. Such a strong faith in God! I wanted to end this last entry on the forum for people that are researching for their loved ones to enjoy EVERY DAY with your person and try not to always talk about their medical condition. I was always obsessed with trying to cure my dad and I feel like I didn't just have the time to be his daughter.

As a nurse working in oncology, I do see the advances that are being done in this field and I hope that I can one day see better survival odds regarding the transplant and treatments. Thanks again everyone!

[Neil Cuadra]

italianburrito,

I'm very sorry to hear that your dad has passed away. You and your family had so many ups and downs in 2015. Things were looking well at the end of last year and the start of this year, making his relapse so much harder to accept. From what you've told us, his spirit was still strong, even when his body could no longer fight off the MDS. You should be proud of how much you and your family did for your dad, not just being such a strong part of his medical team, but accompanying him and supporting him on his journey.

You've been part of our forum family and you're always welcome here among the people who know what you've gone through.

[bailie]

Thank you for communicating with us. We are a small part of the loss you are feeling but all of us feel for what your Dad and you went through. We appreciated all of your comments and I hope he realized how much we were pulling for him. I am very sorry.

[Cheryl C]

This is very sad news. My sympathy to you and your family. You can rest in the thought that you did your very best for your dad. May his strong faith in God comfort you now as you mourn his loss.

[italianburrito]

I wanted to give my dad a face to the name since I talked about him so much. This is his obituary:

http://www.legacy.com/obituaries/del...&pid=180576519

An incredible dad and such a fighter! I truly believe and he is waiting for me and looking down at our family. While I miss him so much, I can only imagine what everyone thinks of his accordion playing!

[bailie]

Thank you. Your Dad was a remarkable person. His life lives on through all of you. This disease is so difficult and unfair. Thank you for sharing.

[PaulS]

I'm sorry for you loss. Your father was blessed with a loving family and daughter - and as father - I'm sure that meant the world to him. Thank you for sharing his obituary - sounds like a great guy. I hope you find comfort in knowing how much he did get to see before he died - and in knowing that you both loved each other and that I am sure he was very proud of you. Best wishes,
Paul

[GoodDay5150]

We are all very sorry to hear of your loss. I have read most of your posts and it was obvious how much you and your family cared about your dad. My recovery after a STC has been easier than I thought it would be, so in that regard I am very lucky. After 5 + yrs of being diagnosed, pre and post transplant appointments and procedures, etc etc., I've spoken to many other patients and families of those w/ AML, CLL, PNH, MDS etc etc. After these experiences I realize how blessed healthy people are, and at the same time I realize that many healthy people don't realize what other people, (such as myself and your father) have to go through. With that, because of my background, treatments, as well as family history, I probably won't be setting any records for longevity. I don't make it a habit to walk around and bark out orders at people, but I will tell anyone who will listen to make the most of what you have as well as be thankful for what you have. God bless

Mario