Need help - Decitabine (Dacogen) questions

[Al's Wife]

There are no words to thank all of you for your words of support and encouragement. It is still too raw and I can't really talk without breaking down, but I do appreciate all the private messages and emails and phone numbers. And I promise if I can get where I can talk without this lump in my throat and I need anything, I will be calling y'all.
We have discussed the options we were given. The family decided to leave it up to Al whether he wanted to do nothing (in which case the doctor said weeks - not months) or to try the Dacogen even though he did not respond to the Vidaza which is similar. So he has decided to try the Dacogen and if he gets REALLY sick, then he wants to stop it and do nothing.
My question is (because I really can't remember back two years ago when he was on the Vidaza - seems like his only problem was tiredness - extreme tiredness, which is already has) does everyone get really sick on the Dacogen in the beginning. I've read so much about it in the past but my brain is just not functioning now so I'm asking y'all to help me out.
Mostly I'm concerned that with him being in a weakened condition that the Dacogen might kill him. The doctor said induction was out of the question for that reason. But I do remember that Dacogen is not like hard chemo; right?

He is on oxygen. And thank you so much, Beth, he did get the concentrator kind. They didn't have the smaller travel thing (my medical language is not as good as yours) but to be honest, I'm thinking Al won't use the oxygen if he's out. He may surprise me, but I'm already wondering if he'll even use the roller tank in the car. I am going to call the doctor's office on Monday and ask them to put in an order for the smaller travel thing (have no idea why he didn't in the first place) and maybe they'll bring that out. But he just doesn't want any reminder and I'll be shocked if I don't have to beg and plead (and threaten) him to wear it except when we go to the doctors, even though it does help him. He's in the low 80's without it and with it, he's in the low 90's so you'd think that alone would make him want to keep it on all the time.

Okay, back to my Dacogen questions. Is the Dacogen going to make him a lot weaker or? If he can't tolerate it, if he stops it immediately will his body recover or has it done its damage and he will have lost what quality of life he has? Has anyone with the platelet problem (he has 0 platelets now) and the bad cytogenetics had any improvement on Dacogen?

Any help is appreciated. And thanks again for all the prayers.

[PattiDean]

Linda, I can only answer for Dean, remember we are new at this, it has only been two months.

Dean's counts were extremely low when he had his first cycle of Dacogen on July 9th of this year.

WBC 1.0
RBC 2.71
HGB 9.3
PLT 19

Dean had been diagnosed with RAEB-T the week before he began his treatment, his blasts were 17%.

Unfortunately three days after his Dacogen treatment, Dean's numbers went lower.

WBC 0.3
RBC 3.01 (improved)
HGB 10.1 (improved)
PLT 3


He had to go into the hospital for antibiotics and transfusions of blood and platelets because his HGB dropped to 8 while he was in the hospital for the week. He also received oxygen in the hospital to help him breath, and he was given Neupogen injections everyday for two weeks.

On August 6th, Dean began his second cycle of Dacogen. His counts were

WBC 2.7
RBC 3.23
HGB 9.9
PLT 88

On the last day of this five day cycle, August 10, Dean's counts were,

WBC 6.0
RBC 3.16
HGB 9.7
PLT 180

Dean has not had any problems while on his five day cycles of Dacogen, he actually feels better. A day or two after treatment he feels weak and tired for awhile, maybe two days.

His first cycle was the worse, that is when his numbers dropped and he had to go into the hospital for a week, but his numbers began to improve with the transfusions and Neupogen and he was able to begin his second cycle of Dacogen, and had no problems at all this time.

Dean has not had a follow up BMB yet, so we don't know if there is an improvement. I do have a copy of Dean's BMB and it showed many abnormalities with a poor prognosis. The oncologist did say he thinks Dean is in remission, but Dean and I don't feel that confident yet, we will feel better when we see his second BMB.

We are considering changing oncologist because the one Dean is seeing now, although caring and compassionate, does not seem to offer us information or answer our questions, he didn't even go over the BMB report, just gave us a copy, after I asked for it. This was the first BMB that was done in the hospital when Dean was diagnosed, we just now received the report.

Dean also began taking Revlimid, 15 mg, this week, along with the Dacogen. He is not having any problems with that either. He will take it for 28 days, two weeks off.

Good Luck to you and Al. I feel in my heart that Al is making the right decision. Don't give up hope yet!

Lots of hugs, Linda

God Bless you both.

Patti

[Birgitta-A]

Dear Linda,
There are patients who respond to Dacogen but not to Vidaza. If Al's counts didn't decrease when he received Vidaza they will hopefully not decrease when he is receiving Dacogen.

Otherwise 90% of the patients initially get low WBCs on Dacogen compared to 79% on supportive therapy, 89% get low platelets compared to 79% on supportive therapy and 82% low HGB compared to 74%.
http://us.eisai.com/pdf_files/Dacogen_PI.pdf
Kind regards
Birgitta-A

[Al's Wife]

Thanks, girls, that was a big help.
Birgitta - Al's platelets are already nonexistent so I'm wondering what that would mean. He did experience some lower numbers with Vidaza (never enough to need a transfusion) but the numbers bounced back - unfortunately, a small bounce. This was back in 2010.
His problem is low platelets and just here recently his RBC's have been low but his WBC's are fine.
I guess we'll just talk to the doctor about it this week. I just worry that I caused his blasts to go up by wanting him in the Promacta trial, so I'm feeling a little guilty.
Of course I want to keep him here as long as possible (truth be known - I want the miracle) and worry that another treatment of any kind might kill him.
Thanks for your knowledge and guidance on this forum.

[Sally C]

Dear Linda,
First of all do not feel guilty about the Promacta trial. Granted Don's blasts weren't high but they actually went down while he was on Promacta.
No one knows - not even the doctors - how someone will respond to treatment. These treatments all have their risks - and benefits. So much of it is a guessing game.
Just know we are all praying for your miracle - and miracles do happen.
Many prayers are coming Al's way - and lots of (((hugs))).
God Bless you both,
Sally

[Mydad]

Hi Linda,

Below is how my dad reacted to the dacogen, but remember everyone is different.

My dad was on Vidaza for 15 months before it stopped working, then he went to Dacogen. At first the doctor was against using dacogen he didn't feel confindent that it would work, and was concerned about the side effects it would have on him. For both medicines we did the 5 day every 21 days. He virtually had no reaction to the vidaza, but the dacogen was very different. It seemed every side effect that was listed he experienced. The sores in the mouth were the worse. He did two months of the Dacogen before he said he couldn't take it anymore. The sores happened within 7 days of the first treatment. When my dad approched the subject with his hemo doctor he said according to his counts (Which I dont have in front of me right now), and all the side effects it was better to stop because he felt that it wasn't working. His last dose of the Dacogen was May 18th.

Prayers for both you and Al

Prayers and Hugs!!
Kim

[Birgitta-A]

Dear Linda,
You know many of us will develope AML even when we only receive supportive therapy - nobody can be blamed if the blast cells start to increase.

Platelet transfusions will hopefully help Al during the Dacogen treatment. Good that the WBCs are holding - they are very important.

Have you read Kirby Stones "Personal Profile" and posts?
Kind regards
Birgitta-A

[milliken2]

Linda;
I can only say that Earl was always tired on Dacogen - and it did not work for him at all. In fact, on Mnday, we are switching to Vidaza Sub-Q injections in hopes that something will work.
I am so glad you are getting the concentrator - but when the RT's (Respiratory Technicians) come, tell then you want the kind where you can refill the portable tanks. If not, they wll pawn you off an old machine that doesn't refill - may look new - but the technology is much improved, just like with PC's. Also - remember that the longer the hose is, the less oxygen Al will be getting. It's not bad to have a long one around, but if Al uses one anywhere over 50 feet - he will not be getting the oxygen that you have it set on - so you will have to bump it up to at least 3 litres in order for him to actually get 2. The same goes for when he has a cold or some other thing than the MDS - 2 litres is what they set children on - an adult should be a constant 3 at least. And at this point, more oxygen into his system won't hurt.
Sorry - don't mean to sound nursely again - but I want you to be aware of things they may not tell you.
Here's hoping the Dacogen works. You are both in our thoughts and prayers.
((((HUGS))))
Beth

[ramey2148]

I am a 34yr old who was transplanted 08-31-2010 and had was diagnosed with MDS in feb. of 2010. My MDS turned to AML in June and then had the BMT. I was cancer free until sept. and the AML returned. They then gave me my donor cells again and I have now been cancer free since. I started decogen in may and I started by taking 3 days of treatment every 28 days. It has worked for me and I think the only side affect I have had has been that I get tired. Now I just get my testosterone shot (which is every 14 days) on my first day of treatment and that reduced the amount of tiredness I get. Now my Dr. Is raising my dosage to 5 days of treatment every 28 days so we will see how that goes. I will let u know.
One question I have is there is a shot that I can't remember the name of that they give you after the last day of treatment that is supposed to bring your levels back up faster. I hBave refused them because my levels have come back up on their own. I am wondering if I should take the shot on my next round of treatment since I am going from 3 days to 5 days of treatment? I think I may just take the shot but am wondering if anyone had any side affects to that. Really sorry I should have the name of the shot.
Well good luck everyone and have the best day you can! Stay Positive!
Bob.

[milliken2]

Bob;
To my knowledge, there is no shot for Dacogen to this point - it has to be given peripherally either through a mediport or an IV access. They used to give Earl a shot of Neulasta on the Monday following his last treatment on Friday - but again, that may not be the case for everyone. Some people take Neupogen which acts in a similar manner.
Good Luck with your treatment.

Beth

[cathybee1]

The shots you might be thinking about sound like growth factors. Such as Aranesp or Neupogen. Both stimulate the production of specific kinds of blood cells in different ways.

[maria&lola]

Hi, Linda--hope you're holding up. Was Al able to start the Dacogen?

My mom started her second cycle this week. So far, so good for her. Her RBC count has fallen off some in the last month, but not to the point of needing a transfusion yet. She hasn't reported much in the way of side-effects except for an itchy scalp. Hard to say about being tired and what not as the kidney disease contributes to her overall state.

I've been dropping her off at Crawford Long and heading into the office for a couple hours while she receives her treatment since I can't go back with her. I asked her if she felt lonely having to go through all this--and she replied--I am not alone, the Lord is with me.

He is also with you. Prayers for you both. Maria

[Al's Wife]

Maria,

It's been a very hectic week. After not hearing from my local oncologist office, I kept checking, of course, to see if they were getting everything in order to begin the Dacogen. I asked our doctor's nurse (who I had several run-ins with earlier) if Al should get platelets before beginning the Dacogen since his platelets were less than 4,000. She said, Dr. S said that Dacogen was not going to help Al's platelets anyway.
I wanted to tell her that wasn't my question. Instead I just repeated the question. She again repeated what Dr. S had said. I told her we wanted to begin the treatment ASAP anyway and she said she would tell Dr. S. His office was just going to administer the drug because they are closer to home, more convenient, etc. but Emory is where we have switched.
I lay in bed and prayed about it that night. I contacted Dr. S's office and asked them if we could switch to a different office because I just could not deal with Dr. S's nurse and her rude, insensitive behavior. So everything was switched to a city about the same distance from our house. It is the same group but they only have one doctor at this office. I called, got an appointment for the next day, and we've been rolling ever since. Al's numbers are still awful. The new doctor said virtually what the others had said, he just said it in a much gentler and compassionate way, and his nurse is an angel.
He said if Vidaza doesn't work, Dacogen won't work. I said but it has in some patients. He said, yes, it has, but not usually. He said he had a patient a year and a half ago who did, but that the chance of it helping Al is 3 to 4%. I said, if we do nothing, the chance is 0%. He said, you are right.
So we left the office with some things to think about. This is totally in Al's hands - no, let me rephrase - this is totally in God's hands. But I'm leaving the decision to Al whether he wants to go forward with it or not. He had to have two units of blood today (his last transfusion was 8 days ago) and one unit of platelets, in hopes that it will help when he begins the Dacogen on Monday.
He has been so sick and weak that I really wasn't sure he would make it through the night a couple of times. The cough is horrible and it tears me up every time I hear him. The doctor gave him Z-pack but it hasn't helped. The warm water, tea, honey and other suggestions have helped but nothing really stops it.
Today has been his best day and strongest day all week, probably because we spent all day (and it is his birthday - 75th birthday) getting blood and platelets. The last word from him was "I'm going to try the Dacogen and if it makes me feel worse, then I'm going to stop and that's it."
He has been so tired and so sick and I can't believe he has gone downhill this fast.
Our priest came by yesterday. I have told Al goodbye (but I confess, I didn't mean it - how do you tell someone you love and have been married to 40 years goodbye) but I did tell him I'm not holding him here if he is ready to go. He asked me who is holding him here and I said, I don't know, it's in God's hands. Al has always been a controlling type person and I told him he couldn't control God. He said, I know I've tried all my life and it didn't work.
Ya gotta love this man. So you can see we've had some tears (okay - maybe a LOT of tears) and laughter.
I'm still hoping for the miracle and will as long as there is a breath in his body. If the Dacogen gives him a longer quality of life, it will be a wonderful blessing. If not, then it is out of our hands.
Sorry I'm a Chatty Cathy but if I'm not talking or typing, I'm crying, so I just ramble on and on and on.
Praying for a miracle.
Love you all,

[SLB]

Linda, your post made me cry.. I am not very good at words like some of the others on this forum but wanted to say my prayers are with you and Al (all the way from Australia!).. wishing you both all the best for Monday and the strength to keep going and smiling through the tears! Hope you both have a restful weekend..

[maria&lola]

Linda--sending you a big hug and belated birthday wishes to Al for strength and improvement...and a miracle. Do you have any friends or family that are helping you?

I'm glad you changed offices. The ladies in the front office where we go are not very nice either. It's such a shame because so many people that aren't feeling well have to make their way in only to be treated poorly by the reception and checkout staff. My mom is a character so I'm sure she'll crack their icy exterior at some point.

On the way down for treatment this morning, my mom said she doesn't put her faith in the medicine--just in God--so she doesn't believe in any of it but she's still going through with it. She's a trooper!

Keeping you in prayer,

Maria

[cathybee1]

Linda, I hope you know that lots of us are thinking about you and Al and sending prayers your way.

[PattiDean]

Linda, it is so very sad to read your post. I always wish that I could wrap my arms around you and take all of this away, but I know in my heart that isn't possible. You and Al are doing the right thing, you want to have hope, because without it, there is nothing.

One month ago Dean's numbers were very low, his platelets were 3, and his WBC 0.3, Dean's oncologist gave him Neupogen for two weeks, thankfully his numbers improved enough for him to take the second cycle of Dacogen. One month ago the oncologist said he didn't know if he could do anymore for Dean, today we are getting ready to begin Dean's third session of Dacogen.

We are praying for you and Al, and for a miracle.

Happy Belated 75th Birthday Al. You and Linda are in our thoughts.
Sending lots of hugs your way!

God Bless!

Patti and Dean

[Al's Wife]

Thank everyone for all the wonderful words of support.

Yes, Maria, I do have family. One of our daughter's who lives in Colorado (she's a Daddy's girl) actually quit her job last Friday when we got this last devastating news and is here with us. She has been my tower of strength. I had held it together until she got here and then I just fell apart and she has taken over for me. I think, "What would I have done if she weren't here," I'm so tired I can't even feel my body. But I think I've probably let down my guard because she is here and I know she will handle things and I don't have to do it all alone anymore. I hope I can be there for her when it all really hits her.
Wednesday night Al and I didn't sleep at all. Then he had the blood yesterday. Last night he slept but was busy, busy, busy all night long, talking in his sleep, working on something with his hands, and laughing. I could understand some of the things he said and some I couldn't.

I hope I'm not going to offend any of my forum friends but I have to post this.

At 3:47 a.m. he is talking in his sleep and he says, and I quote:
"Yankees are like hemorrhoids, they go south and won't go back up."
I cracked up laughing. I think they must have given him a comedian's blood yesterday. He was laughing off and on almost all night. I think he was in a happy place.
We have lots of family coming this weekend along with new three month old great grandbaby.
And I have this wonderful forum family in all of you that have carried me so many times and given me hope and strength. And I can sure use that strength now.
Hope your mom's treatment continues to go well. I was born at Crawford Long. And when my son was born there they asked at check-in, "Where were you born," and my husband or I one told them "Upstairs." They kind of looked at me funny and then I said, "I was born here in this hospital." I'm not going to say how many years though. Hope they've remodeled it since then.
Oh, me, here goes chatty cathy again, just rambling on and on.
Have a good day.

[Sally C]

Dear Linda,
It's times like this that there are just no words - but I think you know what's in my heart.
It does sound like Al is starting to go to a place that's not quite in this world and is a much happier place for him - but not for you.
None of us are going to give up on that miracle - they do happen. And you are both right - it is in God's Hands - as you two are. He is right there with you both.
I know you feel all the prayers coming your way - and they are. So thankful your daughter is there. You have dealt with so much by yourself.
Take good care - give yourself and Al a warm hug for me.
God Bless as always.
With prayers,
Sally

[slip up 2]

Linda....my heart goes out to you

[Neil Cuadra]

Linda,

Your description of Al's very active dreaming made me smile. I guess he knows where to find peace, and even enjoy himself, and I hope you will find it too.

I'm glad you have family with you and more family coming. Lean on them; that's what they are there for.

We are with you too.

[Lbrown]

Hang in there Linda and best wishes for Al.

Deb