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Old Thu Aug 23, 2012, 08:31 PM
ltw ltw is offline
Join Date: Aug 2012
Location: Frostburg, MD
Posts: 3
FIL's MDS turned to AML

Hi, I am a new member. I have been browsing this forum since March when my Father in Law was diagnosed with secondary or treatment related MDS. We found out today that his MDS has progressed to AML so I figured it was time to join the forum. I have been doing tons of research on MDS and AML but am sure that my family is going to have tons of questions in the upcoming weeks/months and think that communicating with people that are dealing with or have dealt with the same thing will be helpful.

As I said, my FIL, age 74, was diagnosed with MDS in March 2012. It was treatment related or secondary MDS stemming from his treatment of CLL three years ago. His treatment plan was to be 4 rounds of Vidaza followed by another BMB to determine if he was a candidate for a transplant. He just finished 4 rounds of Vidaza 2 weeks ago. He did great throughout his treatments - no major side effects or infections of any kind. We thought that he had this thing beat. On his last day of his last Vidaza treatment, he was hospitalized for a very severe sinus infection. During his stay in the hospital, his blasts went from 4% to 12% but his doctor said that it was a side effect of his nupagen (spelling ?) shots. Dr. discontinued his nupagen and his blasts went back to 2%. He was released from the hospital but was receiving daily antibiotic treatments and continued receiving blood and platelets. Yesterday his blasts were up to 6% and today they were up to 30%. His doctor informed him today that he no longer has MDS, it has progressed to AML. He was sent directly from our local hospital to Johns Hopkins in Baltimore, MD. My husband, his sisters and his mother are there with him now. He is being checked in and hopefully will meet with a doctor this evening to be evaluated.

I have read that AML that develops from treatment related MDS is more resistant to treatment and has a poor prognosis rate. Does anyone have experience with this? My FIL is in good physical health, other than the AML...no heart conditions or other underlying health issues so I think that his body will be able to withstand induction chemotherapy, which I've read is pretty rough. No one has mentioned a survival rate or long term prognosis. I guess my biggest fear is my FIL spending what time he has left being deathly ill in a hospital 2 1/2 hours away from his home and his family.

Sorry about the rambling....I have a ton of questions, concerns, and worries churning in my brain right now and it helps just getting some of them off of my chest. Any information / personal experiences that you can share would be greatly appreciated...good or bad. I just feel like his MDS has progressed to AML so quickly and I need to be realistic about what we are dealing with.

Thanks so much and sorry again for the super long post!
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Old Thu Aug 23, 2012, 10:07 PM
Neil Cuadra Neil Cuadra is offline
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,520
Hi, ltw.

I'm glad you decided to post, but don't limit yourself to this forum. Consider the Leukemia & Lymphoma Society to be a good source of information too.

People may avoid talking about survival rates and long term prognosis for a 74-year-old with secondary MDS that has transformed to AML, because based on the statistics from other patients it would probably be grim news, maybe a matter of months instead of years. On the other hand, no patient is "average" and that's what statistics are about. Some patients do much better than others, and that's what lets us be optimistic even in the face of bad news.

I see a number of things that your father-in-law has going for him:
  • He is in otherwise good health. This is very important!
  • He was able to undergo treatment with minimal side effects.
  • He went a long time without infections and is recovering well from the one he had.
  • From your description I think he had a doctor who knew what he or she was doing.
  • He's now at Johns Hopkins, an excellent hospital.
  • He's got his family with him.
  • You're gathering information to help him and asking all of the right questions. Family support can make a huge difference for patients both emotionally and because a well-informed team is there to help with the tough decisions.
You have good reason to be concerned about just such a tough choice - whether your father-in-law should fight back with treatment or spend more quality time with family. It depends in part on the doctors evaluation but just as much on his own preferences. The best you can do is to share the information you gather and be supportive of the opinions and decisions of everyone in the family.

My wife survived MDS and I don't have a personal story to match your circumstances, but I wish you the best of luck and hope you find others who can share experiences as you've asked.

By the way, the granulocyte stimulating drug you mentioned is spelled Neupogen, which is a brand name for filgrastim.
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Old Fri Aug 24, 2012, 09:04 AM
ltw ltw is offline
Join Date: Aug 2012
Location: Frostburg, MD
Posts: 3

Thanks so much for taking the time to reply. My husband and his family are meeting with my FIL's doctor at this very minute. I am anxiously awaiting his call.
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Old Fri Aug 24, 2012, 09:14 AM
Al's Wife Al's Wife is offline
Join Date: Jun 2010
Location: Jackson, Georgia USA
Posts: 205

I can't say it any better than Neil. I just want you to know (and you can read through my posts over the last two years if you have a LONG time to do it) that my husband has a similar situation to your father-in-law. We have been to 4 major cancer centers seeking help over the last two years and a half years.
When we were told last Friday that the MDS was now AML we were given little hope. But as long as there is a breath, there is hope. We presented all the options to my husband and left the choice up to him. It's his body and he's the one that has to make this decision. Only he knows whether he's up to the task.
Quite frankly, as sick as my husband has been this week, I never dreamed he would have said let's try this one last option. But he did and now it is in God's hands.
God bless you, your father-in-law and your whole family as you go through this most difficult of times.
You couldn't have come to a better place for your answers. All of us have either lived this disease as a patient or caregiver.
Someone said - and I can't remember where - I think it was somewhere on this forum - this is a disease of one. And that is so true because every single MDS and AML patient is different. There are no two alike. What works for one doesn't work for the other. People with great prognosis fail treatment. People with poor prognosis respond to treatment. A disease of one. I thought that was a good way to put it.
God bless,
Linda, Al's wife, 75; dx MDS 5/2010; Vidaza 6/2010; ARRY614 & Sapacitabine clinical trials at Emory, no results, stopped 12/2011. Had BMB at NIH on 6/5/12, blasts 10-15% so he's not eligible for trial there. :eek Promacta trial, Tampa, blasts 25-30% 8/17/12 AML, trying Dacogen now and praying.
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Old Fri Aug 24, 2012, 09:51 AM
Sally C Sally C is offline
Join Date: Dec 2010
Location: Chesterfield, Va.
Posts: 457
You have already gotten some great information from Neil and Linda so I can't add to that.
Your FIL is blessed to have such a loving and caring family. As with all of us it's ultimately in God's Hands. Lean on Him, your family and now your new family on the forums.
I wish your father-in-law well.
God Bless,
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Old Fri Aug 24, 2012, 12:55 PM
ltw ltw is offline
Join Date: Aug 2012
Location: Frostburg, MD
Posts: 3
Thank You

Thank you Al's Wife and Sally for taking the time to read my lengthy post and respond. My FIL is having another BMB this afternoon. According to my husband, the doctors are running a battery of tests to get a better picture of my FIL's health. According to my husband, my FIL's blasts were back down to 12% today (from 30%) yesterday. This sounds encouraging but then again this is all new to us so we're really not sure. Is is common for blasts to fluctuate like this when dealing with AML?

Al's Wife - I agree with you....As long as there is breath, there is hope. We all have to believe that. I will keep you and your husband in my prayers.
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