Ron's Watch-n-Wait Ends... New treatment Begins

[Birgitta-A]

Hi Cindy,
First I would like to congratulate Ron on his birthday! I admire his and your courage.

Then I have looked at trials with drugs with abstracts at PubMed even if they are not in Phase II yet. Perhaps you have seen other members trying Estybon - the drug fron Onconova:
http://clinicaltrials.gov/ct2/show/N..._unk=Y&rank=79
http://clinicaltrials.gov/ct2/show/N..._unk=Y&rank=84

Another drug is Sapacitabine that has been in a trial for MDS that is terminated:
http://clinicaltrials.gov/ct2/show/N...itabine&rank=5
Kind regards
Birgitta-A

[Greg H]

Hey Cindy!

Sorry to hear about Ron's situation. And please accept my apology for not knowing the details of his MDS. Is it mostly a platelet problem, or is he getting RBCs as well. The reason I ask is that there's a trial of Promacta (eltrombopag) at NIH in Bethesda for folks with platelet problems.

I take it the SCT is still on hold?

They run a bunch of MDS trials at NIH; it might be worth giving Barbara Weinstein a call (301-594-4180) or email (weinsbar@mail.nih.gov). She's the research nurse who handles MDS trials and would have a good idea of what they are running that might help with Ron's situation.

Take Care!

Greg

[launch]

Thanks Greg,

Ron's MDS is now high risk and it affects all of his blood counts, RBCs, WBCs, and PLTs. He's requiring PLTs twice per week and he's also on the drug called Amicar to help with prevent bleeding. His PLTs were at 4-5 and with Amicar, seemed he was okay, but, then, the bleeding started, so, now they transfuse him below 20,000 and it only holds for a few days at most. Ron has purple marks all over his body... poor thing. Everytime he bumps or rubs anything, seems he develops a purple pooling type bruise under the skin.

We still keep the faith and we go one day at a time. Thanks for the contact information. Today I was reading up on the trial for Oral Clorafarabine. I can't remember which had it, but, I believe MD Anderson was one, and I'm checking into available options (Phase II/III studies preferably) at moffitt Cancer Center w/Dr. List again.

The problem is so many of the trials have restrictions concerning prior treatment and Ron's been on a lot of chemo "Agents" over the past 2 yrs.

Will update as I learn more.
Cindy




Keep the Prayers coming!

[bebop]

Cindy my thoughts and prayers are with you both.

[launch]

Ron was just accepted to be evaluated at MD Anderson/Texas Medical Center in Houston, TX - PRAISE GOD!!!!

Ron's scheduled for appt May 2nd for BMB and then May 3rd to meet with head of MDS departement.

Keep the prayers raised to the heavens! THey are Working!
Praise God!
Love, Cindy

[Neil Cuadra]

That's great, Cindy. Be sure to tell us how the appointment goes.

[Lori Patrick]

Praise God Cindy and Ron! I will pray that this will be a beneficial trip for you both. God is Good. HAPPY EASTER! Keep me in the loop. Love, Lori

[Greg H]

Hey Cindy!

Outstanding! Those guys are really top notch. I hope it all goes well for you. Keep us posted.

Take care,

Greg

[mausmish]

Great news, Cindy. Let us know how it goes.

[launch]

Ron's appt went well with MD Anderson, it seems to be a wonderful facility, but, Ron's problem is that he is so weak. The MDS doctor still referred Ron to a transplant doctor, but, admitted that Ron was "Not a True Candidate" for a transplant, unless he grew in strength and gained weight. He recommended no more chemo and go straight for the transplant, and the transplant doctor said the same.

The only problem is, Ron is so very weak and although he truly wanted to get stronger, the fact is, his body would not cooperate. We're suppose to return to MD Anderson after 1 month, which is this coming week. We were going to fly, but, his Oncologist here recommended against it. Matter of fact, Ron is so weak, they have repeatedly recommended Hospice and focus on comfort. All Ron has mentioned every single day for severl weeks is "Houston"... when are we going to Houston. I though it had become a fixation of his. His Oncologist urged me to call off the appt because Houston will be a drain on Ron's body. The only problem is, to me it would be like "Betrayal" because this is something Ron truly wants or shall I say... "Needs". He needs to hear it from the MD Anderson Doctor.... that they cannot do anything for him due to his weak condition.... and that it's Not Ron's fault.

Bless his heart. I've cried a lot over the past few weeks... I try not to cry in front of him... but, I did a few times, and I told him just how much I love him. I've asked him why we're going to Houston and he said, to see if I can get a transplant. I explained to him that it's not his fault, but, his body has not cooperated, that I did not want to lose him on the trip. He said, he know that I am concerned, but, this is something he truly needs.... to see the doctor face to face and hear what the doctor has to say. If I were to take this away from him, It would be wrong.... even if it means we lose some time...

This is so sad.... I was so encouraged after going to MD Anderson, but, immediately after returning, i knew that it would be almost impossible for Ron to get stronger. The last trip took so much out of him and I fear this one will be worse. He stares in space alot, he fidgets, and he says somethings that don't make sense. I just affirm what he says and i don't condradict what he says. Like, we're here at Emory getting PLTs for the trip and Ron asked "Who I played for?" I'm like, what honey? He said... "Basketball... who did you play for?" I just told him I played in middle school a little bit, but, wasn't very good. He just smiled...

This is really tearing me up. I so miss my husband... this disease has truly stolen him from me. But, I will say, I have learned so much over the past few years since Ron's dx. And, we have still had wonderful times together and we have grown so close in our relationship and we together have a deeper relationship with our Heavently Father. I have prayed and prayed for Ron's body to be healed on "This side of heaven". But, I have to realize and acknowledge that God has already delivered so many miracles in our lives.... and I have to focus on our blessings vs focussing on the sorrow now.

Family keep asking me how long Ron has? I don't know! I tell them only God knows, but if I had to guess, I believe it will be a matter of weeks...not months.

I wish I had better news....
Love you all.....
Cindy

[Birgitta-A]

Dear Cindy,
How sad that Ron is so weak and perhaps can't understand that he will loose so much if he travels to Houston now.

Will he get better care and comfort in a Hospice than at home? In Sweden we don't have many Hospice institutions - only hospitals or staff from hospitals taking care of patients in their homes.

We all hope Ron's condition will improve!
Warm regards
Birgitta-A

[cathybee1]

Hi Cindy,

We haven't talked much, but I just wanted to say how heartbreaking it is to read this. I went back and read some of the journal entries -- what a heroic journey this is for both of you.

I will pray for another miracle for Ron. I am sorry about your horrifying discussion about Hospice Care. The New Health Reform Law allows for "concurrent" medical treatment for Hospice patients, but that is not yet available. In the meantime, have you considered consulting with a palliative care specialist. Palliative care is different from Hospice in that it does not mean the end of medical treatment but like hospice does address patient quality of life.

Thinking about you both,

[Neil Cuadra]

Cindy,

Whatever is ahead, Ron's wishes count the most, and yours too of course.

None of us know what will happen next, but we so hope that Ron gains some of his strength back. We wish you strength too. You've been there every step of the way and we know how hard it is.

[bebop]

Cindy I am so sorry to hear Ron is not doing well. I agree with you the trip might get to him. Atlanta to Houston is a long long drive. If he still wants to try though I agree it is best to let him fight. if you want to talk please feel free to message me and I will give you my number or pm me yours.

you both are in my prayers.

we didn't opt for hospice since Dad was not in pain. only the last couple of days and it was managed well with tylenol.

[mausmish]

Cindy,

I feel so sad for you and Ron at this most difficult of times. His and your stamina and endurance have been incredibke through this long and painful journey. I agree that his wishes are important, and it does sound like he really needs to make the trip. Are you okay to drive or do you have someone who can come with you and help? At least a road trip is time together. I'm sending lots of positive and strengthening thoughts your way. Bless you and best of luck to you both.

Karen

[Noni]

Cindy,

I've been following your caringpage posts and are keeping you and Ron in my prayers.

Hugs to you.

[launch]

I'm saddened to share what all has happened since last post. If you remember, Ron had MD Anderson appt the first week in May, then, follow-up there the first week in June. Ron continued to grow weaker, though, he honestly felt as though he had grown stronger. It broke my heart to take him back to Houston, as I knew the doctors would send him home, but, I had to keep fighting with Ron ... because he was still fighting. I fought with the medical staff at Emory here in Atlanta, as all of them wanted me to cancel his appts in Houston, they did not think Ron would make it there alive.

We arrived Houston, and the first day, they admitted Ron inpatient due to massive infection, that had started from a canker sore in his inner check on the right side of his mouth. (He had complained of it for 2 months!!!). And, his ear was infected severely... he had complained of loss of hearing for over a month!!!!! And, he had double lunch pneumonia when we arrived at MD Anderson... all of which, was not treated or identified at previous treatment facility... (They had literally given up on Ron)...

So, we were inpatient in MD Anderson fro 3 wks, then, they also gave up on Ron, as he grew weaker and weaker. Finally, Ron told me he didn't want me to be mad... but, he was tired... and just wanted to go home.... and wanted to go inpatient Hospice. I fought with Ron the entire time.. I was his "Wingman".... but, when he gave up, I had to give up too... we had fought a long and hard battle... but, it was now over... and I had to release him...

We traveled by ground ambulance, from TX to GA. It was a long ride, approx 13hrs straight through. We arrived Sunday evening, and Ron was with us until Wed at 11:01am.

Please visit caringbridge.org/visit/rallison

for the details... Ron passed on June 22, 2011 at 11:01am. Ron waited for me..... he had stopped breathing 3 min before I walked into the room... but, his heart continued to beat... he waited on me... I Love him so much and I truly miss him... he was and continues to be my soulmate.... He is my world.

This disease is devastating... as it steals the "Life" out of the family.... but, I am so thankful that I had God this entire time.... God never let us down... he carried us when we didn't think we could go on ..... God is Good!

Love you All!
Cindy Allison

PS. My home email: crallison@charter.net
If anyone wants to contact me....

[Birgitta-A]

Dear Cindy,
How sad that Ron passed on. He was fighting so hard and managed well during many months. Now he has got peace.
Kind regards
Birgitta-A

[Lori Patrick]

Cindy, You have been a big help to me during my treatments, and Ron was as well! I remember seeing him painting and thinking.... I can do this. You stood beside him and helped look at all avenues. Now Ron is "home". I'm confident he is watching over you. Take care of you now dear. Love Lori

[Neil Cuadra]

Cindy,

We're so very sad to hear of Ron's passing. You've both been such important parts of our online family.

The loving care and attention you gave Ron is a model for everyone else battling these diseases. Your devotion was apparent every minute and Ron clearly felt it.

I hope your family and your faith will continue to comfort you and that you'll continue to feel Ron's love surround you.