Help understanding sudden decline in FIL's MDS

[ACorvino]

My Father-In-Law was diagnosed with MDS in Feb 2011. At the time, and before the start of Dacogen, he was receiving transfusions approximately every 11-12 days. After a few cycles of Dacogen, his need for the transfusions, including platelets, went to once every 2 1/2 months. He was doing well, despite the severe pain in his legs and side effects of he chemotherapy. He also received shots of Neupogen.

Fast forward to March 2012. He stopped responding to the Dacogen and it was requested that he stop the treatment. They were going to try Revlimid. April was a very rough month, complete with many transfusions, platelets and Neupogen shots. In May he was hospitalized in Morgantown, WV for the entire month, into this month, where he also received another BMB. He was on bed rest, also, due to stress fractures in his femur. He was also getting transfused with two units of blood every 48 hours, and platelets almost just as often. He was getting shots of Neupogen almost daily. He also suffered from Pneumonia three times from May 1st until he just got out of the hospital this past weekend. His HGB was going from 10+ to 7+ in just under 48 hours. His platelets went down low, the lowest being 10. Understandably, he was fighting infection. However, he had never had to be transfused so quickly and often as he has since the beginning of May, even in the beginning of his illness.

They did a BMB on May 11. He also had to go back down to his Hematologist/Oncologist today to have another one. I have been reading a lot on this illness lately and finally asked for a copy of the May 11 BMB findings. We have copies of all labs since his diagnosis, but haven't really gotten into the 'nitty gritty' of things since he was responding so well to the Dacogen. During the labs today, his platelets were 10. They were going to send him home (we live an hour and half away). When I saw the platelet level, I demanded that he get platelets before we left.

My husband and I are begging for advice and knowledge in regard to the latest BMB findings, as we are his only caregivers and we really want to know what we, and also HE is dealing with. We really aren't given too much information. His main Dr. says this is simply an MDS setback, but we aren't too sure.

The final pathologic diagnosis states:
*High grade myeloid neoplasm most consistent with refractory anemia with excess blasts 2 (RAEB-2)
*Trinileage dysplasia with increased blasts (12%)
*Neutrophils 24%
*Neutophils & bands 16%
*Neutrophil metamyelocytes 7%
*Neutrophil myelocytes 4%
*Neutrophil promyelocytes 2%
*5q31 deleted

My FIL is 63. In the beginning of this, we were told that he was NOT a candidate for a transplant. He also has hepatitis C and we were told that because of that, it could possibly kill him. They have since determined that he is not a candidate for Revlimid. Now, they want him to stay in Morgantown and be a clinical candidate. I do need to try to research the clinical. And, they are also saying that he needs a bone marrow transplant, after saying earlier in the disease that it was impossible. His siblings are getting their kits sent and he was also put on the Registry.

We are so confused and broken hearted. Things were going well. Now, we do not know what to do. If someone could please explain a few of those things in the finding (I know some, but not a lot) and let us know if this is bad, good, whatever. Opinions, anything would be appreciated. I'm so sorry this has been such a long read. When my confusion sets in, I tend to ramble rather than just spit out the most important facts.

[Darice]

My hubby is 71 and was diagnosed with MDS in March 2011. His is treatment-related, trilineage, 7q deletion/monosomy 7. Came from treatments for NHL, starting in 2001. He acquired Hepatitis B (probably from transfusion in 2002?) and had a bone marrow transplant in 2008 (this was to kill the NHL; long before MDS came along) at age 66/67 (actually, his 67 birthday was the day before the transplant). He had already been on one medication to suppress the HepB (for several years) and started on a second one 4-5 months prior to the transplant. I know that, at least in his case, the fear was that the transplant (and treatment leading up to it) would reactivate the HepB. The two meds were to prevent that, and he is still on them. We tried coming off about two years ago but the HepB started to reactivate . . . not worth it. The BMT was definitely no walk in the park, and it was a long recovery, but he made it.

[ACorvino]

Thank you for your response and info. He didn't know about the Hep C until right before the diagnosis of the MDS, so he's had no treatment for that. He started Dacogen almost immediately upon given the diagnosis.

Everything is so confusing, not to mention difficult. It's hard to watch someone you love decline, especially when they were so full of vigor. This disease is terrible. We would like to know exactly what we are dealing with, so we can help even more. If it means going somewhere else for treatment, then that's what we will do. We aren't really getting any feedback from any of his Drs and that in itself is very frustrating. I really need to know what questions to ask when we go back for the results of the last BMB next week.

Prayers of healing going up for you and your husband. None of this is a walk in the park, but I hope that someday everyone dealing with this gets to have many walks in the park, healthy!

God Bless,
Amy Jo

[ACorvino]

For example, one Dr says no AML. Another says AML. The clinical study they want him to participate in lasts 100 days.

The clinical study, WVU 1910 is a prospective pilot study of bone marrow and peripheral blood samples from AML patients to characterize the biologic heterogeneity of the disease using Single Cell Network Profiling (SCNP).

We are really confused. We are also trying to stay strong and positive throughout all of this, but without proper knowledge (and their is a lot to learn!), it's difficult to remain strong and positive. I read, and I read, but with so much info, it's hard for me to process it all.

[Greg H]

Originally Posted by ACorvino

The final pathologic diagnosis states:
*High grade myeloid neoplasm most consistent with refractory anemia with excess blasts 2 (RAEB-2)
*Trinileage dysplasia with increased blasts (12%)
*Neutrophils 24%
*Neutophils & bands 16%
*Neutrophil metamyelocytes 7%
*Neutrophil myelocytes 4%
*Neutrophil promyelocytes 2%
*5q31 deleted

Hi Confused!

Sorry to hear about your father-in-law. It's hard to imagine going through two units of blood in 48 hours.

These results say he has MDS with 12% blasts. That's not AML, which is generally diagnosed once blasts go over 20%. Trilineage dysplasia means his bone marrow is messed up in producing all three blood cell lines: reds, whites, and platelets.

Sometimes, once Dacogen quits working, docs will try Vidaza. They work more or less the same way, but sometimes folks will respond to one and then the other.

Usually, Revlimid is given to folks with deletion 5q, and your FIL has a partial deletion of 5q. But Revilimid can really knock down the platelets, which is probably why they feel he's not a candidate for it. (I'm thinking that 50K platelets is about the bottom for that, though I could be disremembering).

I can't get clinicaltrials.gov to come up right now, so I can't read any more about the trial he's been offered than what's on the WVU website. But it sounds to me like a research trial, not a treatment trial. That doesn't mean he shouldn't do it, but it doesn't appear to be oriented toward making him better in any way.

I'm not a big fan of rushing into stem cell transplants. But, if I were in your FIL's position, with huge transfusion needs, dangerously low platelets, lots of infection risk, I would be looking real hard at a transplant -- particularly if you've got a family member that matches.

If you don't want to go down that route, then you might ask about trying Vidaza, or look at some of the clinical trials out there that are combining Vidaza with other drugs to increase effectiveness. If you need help finding those, let me know and I'll help you search for them.

If you want help reading some of the earlier BMB reports, I'd be happy to help with that, as well. You can post them here or in a private message, or email them to me.

It does seem like you need to make a move. If this is just an "MDS setback," it seems like a pretty dangerous one.

Take care!

Greg

[melger]

Hello. I am so sorry to hear about your FIL. This disease is very confusing and there are some amazing resources on this board. It seems like Greg has answered a lot of your important questions.

First and foremost, are you seeing a doctor that is an MDS specialist? There are many doctors that "treat" MDS, but few that are specialists. What part of the country are you in? There are "Centers of Excellence" that specifically treat MDS and my first bit of advice would be to immediately seek out one of them. As in, start looking NOW...and get an appointment this week. This board can help you find one.

I find it interesting that one doctor is saying AML and the other isn't. They don't classify MDS as AML until the blast count is 20%.

Usually they have very good results with Revlimid with patients with 5q deletion. Did they say exactly why he couldn't go on it, other than the HEP C?

Please let us know how we can help...

[ACorvino]

Thank you for your responses. I was beginning to feel alone.

At any rate, a few things have happened since my original posting.

My FIL's June BMB came back with 29% blasts. They called us on Friday, June 22nd and said to report to Morgantown immediately on Monday.

Here is a little lowdown on his levels .. ( I have this weeks, but being chemo altered, I just opted to give the ones before chemo started)

Monday, June 18 - after being transfused
Hemoglobin - 10.7
WBC - 2.4
RBC - 14

Wednesday, June 20
Hemoglobin - 8.8
WBC - 2.6
RBC - 10 .. received platelets

Monday, June 25 (after arriving in Morgantown to Hemo/Onco)
Hemoglobin - 6.7
WBC - 2.6
RBC - 4

On Monday, he had his decisions to make. No treatment, or treatment. They said without treatment, he would maybe make it for another month. He opted for treatment, Thank God Almighty. They did say that the chances are slim, but he is willing to do what it takes. He is such an inspiration. They said he had a 1:10 survival ratio, yet said he had a 50/50 shot of surviving. Tomorrow is the day that I get to speak with the Hemo/Oncologist, so I have a few questions. Well, a lot actually.

When we arrived on Monday, of course he had to receive 4 units of blood and also platelets. His platelet count has since gone to 0, and they are saying his body is rejecting them. Foreign objects. I guess it's not really uncommon with this insidious disease. They are currently trying to find a more suitable platelet donor.

At any rate, he is taking the combo - Idarubicin and Cytrabine. He started the chemo on June 26th. Since then, it hasn't been easy. His platelet level is still 0, his hemoglobin keeps dropping, he has had two transfusions and getting one in the wee hours of the morning, it has dropped to 6.8 since the last one. I don't know why they are continuing to give him platelets. It does not 'up' any of the numbers. Not even to 1.

Sooo.. has anyone had experiences with AML and the chemo? Good? Bad? Has anyone went into remission who has been in a similar situation? I know that everyone is different with this disease.

We did have a scare on Wednesday. He has been fevered (over 102) since he's been here. He had a Bronch done Thursday. They were pretty worried about doing it, because of his platelet level .. but he made it through that. The power of prayer, and God, is totally the most awesome thing we have.

He is also on some pretty heavy duty antibiotics. They are checking into possible kidney problems, as his legs and feet are gigantic! This man surely needs a break. He has been there for my husband and I .. and also our five year old son. They have a great bond that makes my heart so warm. We just want to do our best to take care of him and bring him home without this damn disease. We pray for remission everyday. Not only for our loved one, but for everyone having to deal with MDS/AML everywhere. God Bless all of you, and every day, I lift you all up in prayer .. patients, caregivers, loved ones .. all of us who know what all of this is like.

God Bless,
Amy

[cathybee1]

Though I can't help with your questions, you are not alone here. I am sending prayers your way.

[Al's Wife]

Amy,

Our prayers are with y'all too and wish I knew what to say that might help. Hope things will improve. God bless you all.

Linda