I am not sure how long Earl will continue Vidaza Therapy

[milliken2]

Hello All;

Well - Earl continues to lose weight and muscle mass. He is just finishing his 5th session of Vidaza, and as far as I can see - it is not doing a thing. This week, alone, he got one unit of PRBC's and 2 units of platelets. Tuesday - Christmas Day - he was back at the hospital for an additional unit of PRBC's. Wednesday, he only got chemo - but yesterday, he got 2 more units of PRBC's and one unit of platelets, and today, he got another 2 units of platelets - his platelet count was only 4. He has no energy, and his bones hurt all the time. Too - the appetite is not there. The marinol didn't do a thing, and so far - I can't see where the Megace is doing any better. I am watching him die in front of me, and not able to do a thing. It is so hard- just seeing him wither away, and not be able to help him.
I am letting the decision up to him - whether to continue treatment or not. He has no quality of life, and I don't want him to suffer - just because he doesn't want to leave me alone. I will be crushed when the end comes, but I also don't want him to linger on.
I hope you don't think bad of me - but I love him too much to let this continue.

Beth

[maria&lola]

Keeping you in thought and prayer...I am sorry this has been so hard on you both. Sending you a hug.

[LJacobs]

Dear Beth,

I have been following your journey with Earl and have been so touched by your strength and love, your advocacy for Earl, and your support. You both love each other so much and it is heartbreaking when the treatments aren't working as best they can. I hope Earl has a turnaround and that better days are ahead.

You have deep love for each other and that will sustain you through this and onward. You have the support of your community here. I send you my very best good wishes and will keep you and Earl in my thoughts.

[Birgitta-A]

Dear Beth,
Perhaps you are right when you think Earl ought to stop the Vidaza treatment. It is so sad that he didn't respond to Vidaza combined with Revlimid. Like you I think that quality of life is important.

Will you look for other drugs?
Kind regards
Birgitta-A

[Sally C]

Dear Beth,
I think you are showing the ultimate love by being willing to let him go rather than have him continue to suffer.
I still hope and pray this will turn around but whatever happens - you have done your absolute best and the outcome remains in the Hands of God.
You both are in my prayers.
God Bless,
Sally

[HughHC]

Beth

I feel that leaving the decision up to Earl is the right thing to do. Doing otherwise could leave you with questions and perhaps even guilt as to whether you made the right decision.

Whenever I am faced with what seem to be overwhelming odds I find solace in asking the God of my understanding to give me the strength and the tools to cope with it.

I have never been abandoned in my dark hours when I seek such help. May you also find the strength to get through this trial.

[PattiDean]

Beth,

I cannot find the words to express how sad it is hearing about Earl and everything the both of you continue to go through.

I have read everyone else's post, they are so kind and supportive, many people care and feel the same as me.

You are always the person that is here when someone needs help, and now I feel that I am not able to do the same for you.

Wishing you the best in the coming weeks, and keeping you in our thoughts and prayers always. Love, faith and hope Beth!

Patti and Dean

[Lori Patrick]

Beth, I'm sorry to hear what you and Earl are going through. I, too, would leave it up to him. That is what I would want if I were in those shoes. May God be with you during this trying time.

[Al's Wife]

Beth,

All I can do is repeat what everyone else has said. You have been such a great support for this forum and have carried us through so many of our difficult days and nights. I wish I knew the words that could truly comfort you, but I don't know what they would be. I sincerely hope that Earl will respond to the Vidaza. In August when our Emory doctor more or less gave up on Al was probably the most difficult of times. But Al decided to try one more drug; and, thankfully, we have had some quality of life (three trips, Thanksgiving, and Christmas) for which we feel truly blessed.
I hope that you and Earl find some peace and comfort in the New Year. It's hard for any of us who share this path to say "happy" new year.
Peace and love,
Linda

[bebop]

Beth when I was going thru this with Dad I felt the same way. It is terribly hard to let go but want what is best for them. He knows you love him. He just needs to know you will be ok. If I were in his shoes I don't think I would want to continue either if it was not doing any good. We love you and stand by you thru all of it. My prayers are with you and Al during this hard time. Much love and peace to you.

Elaine

[Cheryl C]

Beth - I truly believe you are doing the right thing allowing Earl to make the decision about further treatment. It shows how much you love him. May God give you peace during this very difficult time.

[milliken2]

Everyone;
Thank you all so much for your support and prayers for both Earl and me. It means more than I can ever tell you.
Right now - on New Year's Day - he is at the hospital getting another 2 units of PRBC's and 2 units of platelets. I had him there at 7:45 AM - so hopefully - he will get done around 3 PM - and at least be able to sit outside in the sun for a bit.
Tomorrow, we have an appointment with the hema/onc, and I am going to ask some very straight forward questions. I know I probably won't like the answers I get - but by the same token, I need to know.
At this point, I don't think there is anywhere we can go for other treatment. Our Doc here is in contact with Moffitt in Tampa, and he has already told me there are no trials going on there. NIH hasn't gotten back to me, and I just don't know where to turn next.
I hope everyone else has a healthier New Year.

Beth

[riccd2001]

Hi Beth: I wanted you to know how much it means to MDS patients to have a loved one and caregiver who cares so much as you do. It almost goes without saying but for a chance to sit out in the sunshine with you after life-giving infusions that we need to keep going, is truly the best treatment for us.

[Cam]

Hi Beth, So sorry to hear he is not responging to treatment. I know you love him and only want what is best for him...

[slip up 2]

Beth... was on that same road a few months ago....just wish i was able to wrap you in the arms of a miracle....Kate

[Darice]

This is all so hard . . . my thoughts are with you both. My hubby only managed 3 injections of the vidaza and then wiped out. Since then, we're only doing Neulasta and no one really knows what's keeping him going.

[SLB]

Thinking of you both.. hope you get to enjoy your little patch of sunshine! Xx

[milliken2]

Hello Everyone;

We went to the hema/onc yesterday for an office visit - the outcome of whidh I am not prepared for - in reality. The Dr. said that if Earl did not respond to the Vidaza/Revlimid meds after 8 sessions (he just completed his 5th) that my only option is Hospice- and we all know that that is not going to happen. I will continue to care for him myself - as I have been. He is at the hospital as I type this getting 2 more units of platelets, and is scheduled for 2 unis of PRBC's tomorrow. I amgiving him a nightly Neupogen injection, but have stopped the Procrit - as it certainly does not appear to be working.
Thank you all so much again for your understanding and prayers - they are certainly needed and appreciated. I hope each of you has a better New Year.
Beth

[Al's Wife]

Beth,

I'm going to keep on praying that Earl will respond. When we were given the hospice option in August, like you, I said, no, I will continue to care for him as long as I'm able.
My heart is aching for you. And I hope you know that there are so many of us that are so thankful for all the wisdom you've shared. I honestly don't think Al would be with me today if it hadn't been for your postings and suggestions.
We go to the doctor tomorrow and after talking to the doctor, Al will have to make the decision as to whether to continue with the Dacogen. I haven't seen the whole BMB report yet, but the doctor did call us over the holidays and said there was "slight" improvement. So I feel sure that if the doctor recommends continuing with the Dacogen, that Al will go along with that. I'm just thankful that the other doctor who told us in August he only had a few weeks was wrong.
Please try and take care of yourself. I know it's hard when you are so overwhelmed with what ifs and when and all that. You are such a wonderful caregiver for Earl and I hope that if things don't turn around, that you will not have any guilt that you should have done this or that. Earl is lucky to have you in his corner.
God bless you and keep you strong. You and Earl are in my prayers.
Please keep us posted.

[bebop]

still praying for you all! I know what a tough spot you are in right now. I am here for you all! Earl and Al are always in my thoughts!

[PattiDean]

Beth,

Linda said it perfectly, you have always been there sharing your wisdom with each of us, and now it is you that needs us.

I agree with Linda regarding hospice, right now it is you and Earl making the decisions regarding his care, you are doing the best you can for Earl.

I wish I knew the right words to say, please know that you and Earl are always in our thoughts and prayers. (((HUGS)))

Patti and Dean

[Sally C]

Dear Beth,
I really can't add any more to the eloquence that others have said. All I can say is wish I you both well and pray that God will guide and comfort you both in the days ahead.
God Bless,
Sally

[MagicBob]

Beth, I also echo the caring and prayers that so many of your MDS friends have expressed. I only got to know you a short time ago through our phone conversation, and reading all the posts speaks volumes of the great caregiver you are for Earl. God will guide you both during these difficult times.

My Love and Prayers to you both.

MagiciBob

[milliken2]

Thanks everyone for all of the love support, and most of all the prayers being said in Earl's behalf. Needless to say - they certainly are needed.

I talked to Greg Hankins the other day, and he said there was a clinical trial going on at Moffitt. When I asked our local hema/onc about it last week, he said there was nothing available. Greg sent me the contact info, and I talked to the research nurse on Friday. She said we had to be established with a Moffitt Dr = and I told her we had seen Dr. Lancet last year, and they also did a BMB on him there. It was Moffitt that definitively came up with the diagnosis of MDS - and at that time, they told me Earl had between 5-8 months to live. Of course, we were both devastated - but he also said to start treatment - and we did.

As I had previously said he went through 5 sessions of Dacogen with no positive response. We have now completed 5 sessions of Vidaza and are on the second session of Revlimid. He will have completed his 6th round of Vidaza/Revlimid before we get to Moffitt on February 5th. I hope and pray that the current treatment regimen kicks in with positive results, and if it doesn't - I hope he can be included in the clinical trial of Eltrombopag/Promacta.

Again, I thank each of you for caring and for your confidence in me.

(((((HUGS)))))
Beth

[PattiDean]

This news at least gives you and Earl hope, and hope can give you the strength to go on.

Beth, I am in Clearwater, if you need anything while at Moffitt, just let me know, I can be there in under an hour.

Will keep you and Earl in our prayers and thoughts. Faith, hope and love are being sent your way.

Patti and Dean