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  #1  
Old Mon Sep 4, 2017, 11:59 AM
Rarity Rarity is offline
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How is the timing of bmt decided

Hello everyone,
This is my first time in the forum. I appreciate all the information posted by all of you as it is very helpful!
My husband was recently diagnosed with MDS RCMD and a bmt for the treatment. The most confusing point we are at right now, is how the timing of the bmt is determined?
He was hospitalized in June prior to diagnoses for unexplained fever and critical blood counts. He received transfusions, antibiotics while in the hospital, is neutropenic and has had 2 more transfusions within the last 2 months. This seems to be his trend. After the transfusions the levels only go up to 9. Then stay in the 8's for a few weeks. The bmb confirmed the MDS.They did search the donor registry and have a donor. We are finding that the information we receive is conflicting and they don't seem to update each other. This is very frustrating. I have researched until my eyes are coming out of my head and found more information than they are willing to communicate. The MD's give very vague answers and feel like it's a bother to ask such questions. Any feedback and suggestions will be welcomed.
Thank you so much!
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  #2  
Old Mon Sep 4, 2017, 12:47 PM
Hopeful Hopeful is offline
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Hi Rarity,

I am sorry to hear about your husband's diagnosis. I would recommend that you get a second opinion - either at that center or somewhere else. You want to feel very comfortable with your husband's doctors, as this is a long process and you will have lots of question. Where do you live?
__________________
50 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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  #3  
Old Mon Sep 4, 2017, 06:40 PM
Rarity Rarity is offline
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Hi Hopeful,

Thank you. We are praying for the best. This is a hard one. Thought about that. We will see after his next visit if that needs to be done. This is supposed to be one of excellence that is closest to us. Thank you for your reply. Wishing you all the best with your journey through this.
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  #4  
Old Wed Sep 6, 2017, 02:19 AM
DanL DanL is offline
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Rarity,

I am sorry to hear about your husband's diagnosis. As for your question about timing, I would say that it is individualized based on your husband's condition, progress of the disease, and ultimately the risk versus reward matrix. My doctor thought that it was best to watch and wait until it became obvious that a transplant was needed. There are various studies out there that have some conflicting information, but the biggest problem is that you only get to see aggregate data, not data that may match any individual's situation very well.

The big picture guideline is that you want to do the transplant prior to MDS converting to AML - which is defined by 20% blasts. You also want to make sure that it is done prior to suffering damage to the organs, and prior to becoming severely overloaded with iron from too many transfusions. For some reason, iron overload has been correlated with poor transplant outcomes, although most of that data is older.

In my case, I was diagnosed in 2010 with MDS RCMD, trisomy 8 and bone marrow fibrosis. The only true sign of the disease was that I had thrombocytopenia. This persisted for almost 4 years where I had 20k to 30k platelets - (150k is low normal), but I did not require transfusions or treatment. Then one day in late 2013, it all changed - it became very obvious that a transplant was required to give me a chance to live, and so within 2 months of the change, I was in for transplant. I am now 3.5 years post-transplant. The doctor told me I would know when it was time, and I certainly knew at that point that it was time.

The unpredictability of the course of MDS along with the personal health history makes it hard to pinpoint a date or a timeline, which might be why the doctors seem to be playing coy with your husband. I received 3 separate opinions, and all three said the same thing in the beginning, "you are too healthy for a transplant, there is too much risk right now."

I think that it is wise to get that second opinion both for the confirmation of diagnosis, and for a confirmation of treatment plan. I know that I was able to feel a lot more comfortable once I was told the same thing by different, completely unaffiliated doctors that specialized in bone marrow failure and transplant.

Along with being proactive self-advocates, maintaining a positive attitude and confidence in the outcome are key to your husband's long-term success.

I wish you both well.
Dan
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. No longer experiencing nor treating CGVHD. Working on fixing long-term side effects of AVN in hips and cataracts in eyes. Life is good!
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  #5  
Old Wed Sep 6, 2017, 01:48 PM
rar rar is offline
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I had 3 second opinions. They pretty much agreed. I had MDS RAEB 2. What I read for mild to moderate MDS wait and watch has the best survival. Very high risk says to transplant ASAP while you are still strong. My transplant was just a few months after diagnosis, as fast as they could get blasts down and the logistics worked out.

Ray
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  #6  
Old Thu Sep 7, 2017, 08:34 AM
Rarity Rarity is offline
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Hello DanL,

We appreciate your reply. Your diagnosis is almost identical to my husbands (RCMD w/grade 2-3 fibrosis trisomoy 8 pantcytopenia.)His blasts are almost nothing which is a good sign?

I'm so very grateful to have found this site as it has helped tremendously in understanding more about this complicated disease. As you said the information out there is not tailored to any one individual's situation. That makes it confusing to say the least.

He has been receiving transfusions, and I believe I mentioned that the trend seems to be about every 8 weeks. The last one a week ago. So we will see how his counts go. Other than the transfusions, he has no other health issues, no treatment, or on any medications, other than the unpredictability of the MDS.

You also mentioned you had no transfusions. Does that make a difference with disease progression? Would you know how many is to many transfusions as far as iron overload? If you don't mind me asking, what was the change that had you go to transplant?

He was very sick and was hospitalized before we were given the diagnosis of MDS.We thought it was just an infection/virus of some sort. He is doing well now and seems to be okay with how the center, he is being seen at, wants him to be monitored.

He recently had another appointment and they changed the transplant to watch and wait. As you mentioned in your case, he is healthy for transplant. We'll take it! Another BMB in the next month or so. Along with weekly blood checks.

I will say this...Had I had not been reading everyone's posts, I think they would have to send me away! Because with that change I would of thought they were out of their minds. One breath telling us he will need to transplant, he has a donor ect. and then to find out it has changed. But reading other's is very helpful and lessens some of the unknowns and anxiety.

Be well,
Rarity
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  #7  
Old Thu Sep 7, 2017, 09:02 AM
Rarity Rarity is offline
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Hello Rar,

We appreciate your reply. We are hoping that the watch and wait extends into years (with some luck) as it is for some with the disease. It is unpredictable and in God's hands.

I'm glad you are doing well after your transplant, even with your difficulties that went with it. Wishing you well for years to come. Thank you for serving!

Thank you,
Rarity
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  #8  
Old Fri Sep 8, 2017, 07:19 AM
Cheryl C Cheryl C is offline
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Hi Rarity - I've been on watch and wait for five and a half years now. However my main problem is low white cells (they're usually around 1.5). I've never needed blood transfusions. I have IV Intragam every few weeks, and while it doesn't raise my white cell count, it helps my immune system. My haematologist thinks I could live for years more as long as I can avoid serious infections.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. On watch and wait since Feb 2012. IVIg 4-6-weekly. BMB Feb 2014 - no blast transformation. 2017 still stable.
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  #9  
Old Fri Sep 8, 2017, 06:07 PM
Rarity Rarity is offline
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Hello Cheryl,

We are just learning and trying to educate ourselves as much as possible with all of this.There are just so many variables with MDS.

We hope you avoid those serious infections so you can stay as well as you can with your situation. That is also a concern of mine for my husband especially with flu season approaching.

Be well,
Rarity
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  #10  
Old Fri Sep 8, 2017, 07:07 PM
DanL DanL is offline
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Rarity,

I experienced a couple of changes pretty rapidly - First, I felt generally horrible compared to before. Second, my hemoglobin dropped from 13 to 6 in a month's time. Third, I suddenly had peripheral blasts, whereas all of my prior marrow biopsies and blood smears had 0% in the blood, and no more than 3% in the marrow - albeit 0% until about three months before the change.

About the transfusions, I don't know that there is an established number, just that really high iron stores can be an issue. From what I know, that typically means dozens of transfusions, and they now use chelation techniques and medications to reduce the level actively.

I did see that you noted that your husband only gets to about 9 with transfusions - have you asked about going higher? They usually only transfuse to a minimum level, but depending on the patient's ability to cope with lower numbers, they sometimes will go to 10.

As for the whole watch and wait -- it is hard to live with, but is a better choice than transplant from an overall statistical study. This is really where having a team of doctors that you trust really matters, and being completely honest with that team when something doesn't feel right matters.

I am glad to see that the plan of action slowed down a bit to watch and wait for your husband though - As I think I noted earlier, I was there for almost 4 years and had a pretty normal life during that time.
__________________
MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. No longer experiencing nor treating CGVHD. Working on fixing long-term side effects of AVN in hips and cataracts in eyes. Life is good!
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  #11  
Old Sat Sep 9, 2017, 02:54 AM
Hopeful Hopeful is offline
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Hi Rarity,

You mentioned that your husband has trisomy 8. This is thought to be a prognostic marker of immune mediated MDS that is responsive to IST. So keep this in mind, should his status change.

My doctors started to talk chelation after 15 units/bags of blood. They weren't ready to take action yet, but we started talking strategies. I think 20 units of blood is where doctors start to worry about iron overload.

Viruses can be nasty and are considered one of the triggers for bone marrow failure. I think this was the case for me!

Hope your husband stays stable and strong!
__________________
50 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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  #12  
Old Sat Sep 9, 2017, 09:46 AM
Rarity Rarity is offline
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Quote:
Originally Posted by DanL View Post
Rarity,

I experienced a couple of changes pretty rapidly - First, I felt generally horrible compared to before. Second, my hemoglobin dropped from 13 to 6 in a month's time. Third, I suddenly had peripheral blasts, whereas all of my prior marrow biopsies and blood smears had 0% in the blood, and no more than 3% in the marrow - albeit 0% until about three months before the change.

About the transfusions, I don't know that there is an established number, just that really high iron stores can be an issue. From what I know, that typically means dozens of transfusions, and they now use chelation techniques and medications to reduce the level actively.

I did see that you noted that your husband only gets to about 9 with transfusions - have you asked about going higher? They usually only transfuse to a minimum level, but depending on the patient's ability to cope with lower numbers, they sometimes will go to 10.

***Yes, he does get to the 9's after transfusions. He says he's able to function in the mid 8 range with a little light headed at times and some tiredness. When the hgb starts to drop to around 8.2 and below, then he says he really starts to feel it.
We weren't aware that they can transfuse to a higher #. Have to question about that. I'm thinking maybe because he can function in the 8 range and they consider that his minimum level?

As for the whole watch and wait -- it is hard to live with, but is a better choice than transplant from an overall statistical study. This is really where having a team of doctors that you trust really matters, and being completely honest with that team when something doesn't feel right matters.

***Watch and Wait is hard as you know all to well. We will take it! This is a difficult and complicated disease to live with. Too many unknowns. But, it is what it is. Finding ways to cope as best as possible and take one day at a time.

I am glad to see that the plan of action slowed down a bit to watch and wait for your husband though - As I think I noted earlier, I was there for almost 4 years and had a pretty normal life during that time.
***We are too. In a strange way it was like some of the weight was lifted but not letting the guard down all the way. Hoping he can get some years in too without the BMT.
Thank you again for some more insight on this. We appreciate it.
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  #13  
Old Sat Sep 9, 2017, 09:55 AM
Rarity Rarity is offline
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Originally Posted by Hopeful View Post
Hi Rarity,

You mentioned that your husband has trisomy 8. This is thought to be a prognostic marker of immune mediated MDS that is responsive to IST. So keep this in mind, should his status change.

***Not understanding what this means? If you wouldn't mind explaining, I'd appreciate it. Thanks!

My doctors started to talk chelation after 15 units/bags of blood. They weren't ready to take action yet, but we started talking strategies. I think 20 units of blood is where doctors start to worry about iron overload.

**** We will keep track of the units too.

Viruses can be nasty and are considered one of the triggers for bone marrow failure. I think this was the case for me!

Hope your husband stays stable and strong!
***Thank you. We are wishing you the same!
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  #14  
Old Sat Sep 9, 2017, 01:52 PM
Hopeful Hopeful is offline
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Quote:
Originally Posted by Rarity View Post
You mentioned that your husband has trisomy 8. This is thought to be a prognostic marker of immune mediated MDS that is responsive to IST. So keep this in mind, should his status change.

***Not understanding what this means? If you wouldn't mind explaining, I'd appreciate it. Thanks!
Hi Rarity,

First a disclaimer...I am not a doctor or in the medical field but just try to keep up-to-date on the latest research

Trisomy 8 is a mutation that is seen in both Aplastic Anemia and MDS. Is your husbands marrow hypocellular? Does he have significant dysplasia or other cytogenetic abnormalities? Does he have blasts? What are his CD34 levels (from his BMB flow cytometry report).

If his trisomy 8 mutation was caused by an immune attack that went awry (like from his bad virus) it could be that he would respond to Immune Suppressive Therapy (ATG/Cyclosporine). My understanding is that there is a subset of MDS that evolves from AA. The theory is that this is because an immune attack is going on that eventually damages the stem cells causing full blown MDS.

Recent presentations that I have seen show that trisomy 8 [and trisomy 6] can be markers for an immune attack.

Does your husband have a PIG-A mutation? If he hasn't been tested for this (PNH) he should, as that is another indicator that an immune attack is/was present.

Also, how big is the trisomy 8 clone?
__________________
50 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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  #15  
Old Mon Sep 11, 2017, 12:25 PM
Rarity Rarity is offline
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Hello Hopeful,

I realize you and others are not doctors. You are just trying to help others understand this disease. Some are more knowledgeable than others at present.

I apologize, but I made an error on the trisomy 8. That was in my mind for another type of cancer he had without treatment. Just removal several years ago. They were also testing that to see if it had anything to with a diagnosis while they were trying to figure things out. That was ruled out and the MDS was confirmed with the BMB.

His marrow is hypercellular less than 5% fat with focal architectural distortion due to fibrosis. Cytologic detail is not optimal. Erythroid elements are mildly increased and exhibit orderly maturation.

Blasts are difficult to enumerate but appear to comprise less than 5% of marrow cellularity.

Megakaryocytes are moderately increased, occur in occasional clusters and show dysplastic/atypical forms. Scattered lymphocytes and plasma cells are seen.

Reticulin is moderately increased grade 2-3. It shows 3 copies of RUNX1 in 5.5% of the cells suggesting trisomy 21/21q

Stay well,
Rarity
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  #16  
Old Mon Sep 11, 2017, 09:36 PM
Cheryl C Cheryl C is offline
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Hi Rarity - You're doing the right thing trying to find out as much as you can so that you and your husband can make informed decisions. My previous post was just so you know that it's possible for some to live well on W&W for long periods of time (with regular monitoring of course) and that rushing to transplant isn't always the only option.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. On watch and wait since Feb 2012. IVIg 4-6-weekly. BMB Feb 2014 - no blast transformation. 2017 still stable.
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  #17  
Old Tue Sep 12, 2017, 09:27 AM
Sue&Dave Sue&Dave is offline
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Hi Rarity -
It seems so counter-intuitive to not do something doesn't it? We have always been told that the earlier you catch cancer the better chances for survival. I am an action sort of person and found it incredibly difficult to just W&W. At one point we even made the decision to go to transplant while my husband was healthy in order to give him the best chance possible. A totally separate health issue arose that prevented the transplant and we are looking at that as a blessing in disguise. After he recovered from his multiple surgeries, his MDS symptoms began in full force and he was started on Vidaza. So don't forget there is another set of choices out there - medication. He has been lucky and not needed any transfusions except one during his first round. At this point we are certain that the Vidaza is doing more good than harm. As of yesterday - Day 1 of Round 9 all of his counts were normal! But just to hedge our bets, I have tasked his docs to come up with a cure for this disease in anticipation of the Vidaza not working at some point
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  #18  
Old Wed Sep 13, 2017, 08:05 AM
Rarity Rarity is offline
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Quote:
Originally Posted by Cheryl C View Post
Hi Rarity - You're doing the right thing trying to find out as much as you can so that you and your husband can make informed decisions. My previous post was just so you know that it's possible for some to live well on W&W for long periods of time (with regular monitoring of course) and that rushing to transplant isn't always the only option.
Thank you Cheryl for your comment. As much as it is for the unknown, and the watch and wait, it's better than going to transplant. All the best to you
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Old Wed Sep 13, 2017, 08:34 AM
Rarity Rarity is offline
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Originally Posted by Sue&Dave View Post
Hi Rarity -
It seems so counter-intuitive to not do something doesn't it? We have always been told that the earlier you catch cancer the better chances for survival. I am an action sort of person and found it incredibly difficult to just W&W.

*****It most certainly does seem that way. I've been down that road a few times with other family members. But those types of cancer were diagnosed, and treatment. Cut and dry. This as you know is not. But we are getting quite the education with this. I am an action type person too. I need to fix it yesterday, but sometimes that's just not realistic. I guess I'm doing the next best thing for him.

At one point we even made the decision to go to transplant while my husband was healthy in order to give him the best chance possible. A totally separate health issue arose that prevented the transplant and we are looking at that as a blessing in disguise. After he recovered from his multiple surgeries, his MDS symptoms began in full force and he was started on Vidaza. So don't forget there is another set of choices out there - medication. He has been lucky and not needed any transfusions except one during his first round. At this point we are certain that the Vidaza is doing more good than harm. As of yesterday - Day 1 of Round 9 all of his counts were normal! But just to hedge our bets, I have tasked his docs to come up with a cure for this disease in anticipation of the Vidaza not working at some point
Nothing has been mentioned as far as medication. Just monitoring his levels and transfusions.
His Hgbl dropped again this week to 8 and he was a little down about that. The platelets slowly crept back up over the months and is in the normal range now. That's great but just wondering if that is one of the inconsistencies with MDS? Will it go back down again?

That's a nice blessing not to have to go to transplant. I'm glad the Vidaza is working in his favor and his counts are normal! Hoping for the best for your husband and you. Thank you for responding to my post.
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Old Thu Sep 14, 2017, 12:47 AM
Hopeful Hopeful is offline
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Hi Rarity,

There are a lot of really interesting presentations through the AA&MDSIF on the latest advances in MDS research. If you haven't checked them out, go to:

https://www.pathlms.com/aamdsif/categories/362/courses

One of the more recent ones by Dr Roboz emphasized that although in-depth genetic testing is more common place these days, they are only at the beginning stages of trying to assimilate all of the data - especially since some mutations show up in "healthy" people as well!

The video mentioned that having a low percentage of cells with a mutation is a good thing. Was the BMB before or after his platelets rose to normal levels?

Hopefully, things stay stable or improve for your husband. Watch-n-wait is not a bad place to be
__________________
50 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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  #21  
Old Sat Sep 16, 2017, 07:51 PM
Rarity Rarity is offline
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Hi Hopeful,

Thank you for the link I'm finding the presentations informative.

The BMB was at the time of the low platelets. They slowly have come up to just above normal. Not sure if that's his marrow bringing it up or due to transfusions.

All the best for you,
Rarity
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