Prayers back to you Linda, ( we are at Emory today getting an infussion ) I have been following you since I have joined this site.... you are one of the people that have been my rock.....Billy

Tina has been through so much, at such a young age. It makes us step back and realize we have been blessed.

You and Tina are an inspiration. You are always offering encouragement and words of support to other members on this forum.

It is difficult enough seeing our loved ones go through everything, but when they are discouraged, it seems to be twice as hard. I wish I could wrap my arms around everyone and take this awful disease away. I know I couldn't be as strong as they are.

Hugs to you and Tina!

Linda, I just said a prayer for you and Al.

Dean seems to be more weak than tired, and has a great deal of difficulty breathing, even if he just walks across the room. They measured his oxygen levels at Moffitt, and they were fine. Dean saw his cardiologist two weeks ago, everything looked good, so we have no idea if this is the MDS or something else.

The doctor in Moffitt said the weakness and shortness of breath were because of Dean's low counts, but his oncologist locally says that isn't the cause. So who is right?

Dean had two transfusions last week, Wednesday and Friday, one unit of packed red blood cells each day, and six units of platelets. For a few hours afterwards Dean feels better, but it doesn't last for long.

Last night we went out to dinner with our neighbors. We dropped Dean at the entrance to the restaurant, he had to sit down before he could even walk to our table, and then had trouble breathing when we were seated. Of course, Dean hardly ate anything, just a bowl of soup, but at least he was trying.

Dean has an appointment with his oncologist tomorrow afternoon and labs, we are wondering what they will be. When does Al have labs again?


I can understand your fear of "what if". Right now Dean and I aren't really getting any answers, we are given options, but no one is telling us where Dean is at with this disease. Dean feels as though he is too weak to go through the tests for the trial study, and then have to wait until the middle of September before he can start the drug.

We want to ask his oncologist about starting Vidaza, even though his oncologist says it won't help. At least Dean feels like he has some hope if we do try. Doing nothing won't give us any hope, and the way Dean feels right now, he isn't sure he will be here in September for the trial.

Love, hugs, faith, hope and prayers Linda and Al.

Patti and Dean

Patti-

It can be so frustrating to try to communicate with the Dr. and his office. Getting answers and having your Dr. take your concerns and questions seriously is so important. Our local Dr. is usually very helpful but on a busy day he will try to gloss over some things important to us that we might not know. We've found just saying "I'm confused", whether you are or not, helps slow things down to get your questions answered. Our Mayo Dr. and our local Dr. don't always agree either.

With the PBRC transfusions, when Bob gets 2 units in the same day, it lasts longer and gives him more energy than getting them on separate days. He doesn't get platelets so that could be a difference from your case but it could be something to try.

I think that's the bottom line. If there is a next thing to try, there is hope and who doesn't want a little hope?

Sending hugs and prayers to all patients and caregivers today!

Patti...as i read your posts remembering the first post you made & you so sure you would never understand any of this chargin about blood counts & what is involved with MDS....with this dreadful disease how wise we have all become....this disease has taught us much about life & living....being so tired and worried yet we still go forward....how lucky we all are to love the people we love & be loved in return....

We did use a walker and a wheelchair as the breathing became an issue, just made life much easier....it is all part of the disease....

This form is like a family we will never stop caring for.

Did find some info on the clinical trial 17280....i googled clinical trial MDS...then went to INCB024360....Birgitta or Dan might understand it....

Take Care
Kate

Thank you Liz. I found it interesting about 2 units of PBRC. Dean's oncologist probably won't agree to that, but we could ask.

We are still considering the trial study, Dean would like to do it, but he is feeling so weak, he doesn't think he can make it until September. We will speak to his oncologist tomorrow and hopefully find out his feelings.

If Dean can't do the clinical study, then he would like to at least try Vidaza. He doesn't want to give up yet. The doctor at Moffitt told us these are the only two options left for Dean, so he wants to at least try one.

We have our list of questions for tomorrow, and the paperwork for the study, which they gave to us at Moffitt. We will remember to say "I'm confused", because most of the time we are. :-)

Thank you for telling me that your husband's doctors don't always agree either. :-)
Lots of love and hugs, faith, hope and prayers always,

Patti and Dean

Hi Kate,

I found the study!!! Thank you. The write up is different than the report they gave to us at Moffitt, of course that one is about a dozen pages long. Lots of reading.

Our papers say the drug has only been tested on animals for MDS, but later in the report it says the drug has been tested on humans for other diseases. That made Dean feel better. The study will last sixteen weeks, every four weeks is a new cycle. If someone shows an improvement on the drug, it is an oral medication, they can continue using it for up to 12 months after completing the first 16 weeks.

Yes, I feel as though I am becoming an expert in blood counts. Not really, but I sure do know more than I did last year. :-)

We have a small Honda Civic, so a regular size wheelchair would be a challenge, but my neighbor has a small transport one that folds up compactly. It will be easier for Dean, walking is becoming so difficult for him because he is so weak and out of breath.

We are thinking of getting a walker for around the house, I am afraid Dean is going to fall down, so it would make me feel better if he used one.

Thank you again for finding the study! :-)

Love and hugs, faith, hope and prayers!

Patti and Dean

Bob, Dru and family,

Dean and I want you to know that you are in our thoughts and we are keeping you in our prayers as you go to Johns Hopkins.

(((HUGS)))

Patti and Dean

All of you going thru this is in my prayers. I remember well the rollercoaster ride with my Dad. It is not fun at all. So many questions and little answers. May God Bless you all right now! Much love.
Elaine

From about a year ago, on DRUGS.COM...
 

A little more info on INCB024360 that is easier (?) to understand basics of this new treatment, maybe? :cool:

http://www.drugs.com/clinical_trials...do1-13761.html

Thank you Elaine.

Dean is so weak, I have to help him shower, shave and dress himself, because doing these activities exhaust him. He has had three transfusions in the last two weeks, but they don't seem to be helping, his counts improve slightly for a day or two, then go right back down.

Dean wants to keep trying, he says he doesn't want to leave me yet, he knows we only have each other and I will be alone when he is gone. He is hoping he is strong enough to try the trial, but in the back of our minds, we don't think he is. Also, Dean would be willing to try Vidaza, even though the doctors say it won't help, since he responded to Dacogen, and it stopped helping after a year. Dean still wants to give it a try, if he can't do the trial study.

We don't want to believe this is the end for Dean, because the doctors told him he doesn't have many options. It is sad to hear how people linger for weeks or months near the end stages of MDS, that has to be the most difficult part.

Dean did so well for a few months while on Dacogen, so we were blessed to have that time. I guess we are selfish because we just want to have a little more time, but not at the risk of Dean suffering.

Thank you again Elaine. I know it was awful for you watching your dad going through this.

Love and hugs, Patti

Thank you riccd. It is good to read as much information about this trial as possible.

When we met with the trial study people at Moffitt, they told Dean that the drug they were using had not been tested on humans yet for MDS, apparently it had been used in research for other types of cancer. Also, they said the drug had been tested in combination with another drug, but the side effects were life threatening, so they stopped the combination drugs and will only be using this one drug in the trial. It is an oral medication.

We don't know if Dean will be strong enough to go through the pretesting, because he is so weak at the moment or if he will qualify after going through the test. The study won't begin until the middle of September.

Patti Dad didn't really just linger really. They stopped his transfusions because there were not working at all anymore. he got 2 units of blood per week but platelets he got 2 times per week. They simply did nothing at all for him. I am so thankful that 15 minutes before he passed he was laughing with me. He passed standing up in my arms. I will forever be greatful.

I say if Dean is not ready to stop then don't. Keep going as long as he wants to. I pray that something works for him. do you have a wheel chair and/or a walker for him? if not I have both. just let me know. My heart is with you.!

Elaine

Hi Elaine,

We just returned from Dean's appointment with his oncologist and we have decided to go with the trial in Moffitt. Dean's oncologist feels Dean should be able to get through the pre-testing, and hopefully qualify. This is the only option for Dean at the moment, although if Dean doesn't qualify for the study, his oncologist said they will then try Vidaza.

Thank you for the offer regarding a wheelchair and walker. Thankfully we have a walker for Dean. His oncologist said he would rather Dean use that instead of a wheelchair because he wants him to use his muscles in his legs.
He is also having a physical therapist come in three times a week.

So Dean feels a little better right now, he is happy that his doctor feels he should be able to do the trial, that gives him hope, and that is all we need right now.

Dean's blood counts weren't great, his platelets were 10, so six units of platelets tomorrow. Thursday is more labs since Dean's hemoglobin was 8.3, probably will be getting PRBC on Friday.

We have to get an email off to Moffitt to let them know that Dean wants to be a part of the clinical trial. It will be a busy month with all the testing, but being busy keeps our mind off of everything else.

Love, hugs, faith, hope and prayers,

Patti and Dean

Patti.....thank Dean so very much for doing the trial....with people doing the trials....who knows maybe we might find a drug that will keep our loved ones alive for longer.....I know my Pal was very thankful for those who did the Vidaza trials as it kept him alive for longer than he was given....thank you Dean.....Kate

:) The trial will help Dean also, it gives him hope and he needs that so much right now! We will keep you up to date on how he does. Dean has some pretesting that has to be done at Moffitt, another bone marrow biopsy, physical exam, blood work, etc. to see if he qualifies to be a part of the study. If he does qualify, Dean will probably begin taking the medication the middle of September.

Love and hugs, Patti and Dean

Dear Dean and Patti,
I think this is wonderful news. As the great Jimmy Valvano said - "Never give up - never ever give up!" When you have hope anything is possible.
You have no idea how much I wish I could be there to help you both!
Many prayers and lots of (((hugs))) from me to you.
With love,
Sally

Patti that is awesome! I am praying for you guys!

Patti,

If Dean gets into the trial then he'll also be a hero to other patients. Trial research brings potential new treatments to all MDS patients.

Hi Sally,

You are here helping us out, with your posts and emails, always cheering us on and giving us support and those wonderful (((hugs))) and prayers!

Dean thought his doctor would tell him he was too weak for the trial, but Dr. Miranda told Dean it is his only option, and if he wanted to try, to do it. I think emotionally it helped Dean, he does now have that hope that he so desperately needed.

I wasn't sure who Jimmy Valvano was, but Dean did. Dean said he died from cancer at a young age and he had been a college basketball coach. I read some more about him online, what an outlook he had on life.

In our lowest moments we will try to keep remembering to "Never, ever give up"!

Thank you Sally, I hope you know how special you are, you are my angel! :-)


Lots of (((hugs))) back to you, I wish I could give them to you in person!

Patti and Dean

Thank you Elaine and Neil for those supportive words and prayers, and for cheering Dean on! :)

He still has to make it through the pretesting, and hopefully he will qualify.

Dear Patti,
Thank you for your kind words.
Jimmy Valvano was the basketball coach at North Carolina State University - my home state. :) His team won the NCAA basketball championship - was one of the great wins of all time as they were the underdogs. This is a link to one of the most inspiration speeches I have ever heard - shortly before he passed away. I'm posting it for you - and anyone else that needs a boost. He was Italian through and through.
http://www.youtube.com/watch?v=HuoVM9nm42E.
Love and (((hugs))),
Sally

Hi Patti and Dean,

I was trying to respond sooner, however we have been mentally and physically kaput!

Our visit to Johns Hopkins on August 5th was a very difficult and long day, as news wasn't good, beginning wiith very low WBC 0.7, ANC 0.3, PLT 7.

Then met with the MDS specialist, and he informed us the bone marrow isn't producing enough good cells and Chemo is no longer active. Also, stated that "I don't have any other type treatments to offer". But I want to do an
aggressive transfusion plan for the next 60 days, in hopes that it may start to stimulate marrow.

I started the transfusions on August 9th, and will continue every week, with
CBC and Oncologist every Monday and Thursday, Platelet transfusions every Tuesday and Red Cell and Platelets every Friday.

If no response, there is a Clinical Trial starting late September, and the Doc gave us 13 pages to read, and digest.

Lastly, the doctor said that I can't let you go back to Pa. with a Platelet count of 7. So, at 4pm I was given 12 units of Platelets, and began our drive back home and all hell broke loose. I got the chills and then went into violent shaking (Rigors).

We were about 5 blocks from the hospital and our daughter did a U-turn back to the hospital. Three hours later we were on the road again, and arrived at home at 11pm.

I have been reading your other posts and hope to respond to you later.

Give our very best to Dean.

Your are both in our prayers,

Bob and Dru

Hello Bob and Dru,

I can certainly understand that you are physically and emotionally drained, you have been through so much since your last post.

Your visit to Johns Hopkins almost sounds like Dean's visit to Moffitt, luckily we didn't have to stay for a transfusion, although Dean's platelets were at 8, we were able to have the transfusion at our local hospital the next day. Dean has only been receiving 6 units of platelets, and recently just "single donor" platelets, so far he has not experienced anything like what you went through. How did they stop the shaking and chills? That would scare me.

Last week Moffitt called and asked Dean to have his cardiologist do an EKG and fax it to them. Yesterday the trial team coordinator spoke to Dean and told him that he couldn't take part in the clinical trial because of his heart. Many years ago Dean had a few heart attacks and surgery, he has not had anymore problems since the mid nineties, but he is on medication. Apparently Moffitt feels his heart has too much damage to permit Dean to be a part of any clinical trial they are doing, so they are telling him there is nothing more they can do.

Our local oncologist said he would be willing to try Vidaza, but right now Dean's counts are extremely low, and he would like them to be higher before starting treatment. It seems like Dean is almost on the same schedule as you are. During the last three weeks, he has been receiving packed red blood cells and platelets twice a week, and a weekly shot of Procrit. His counts still aren't great, yesterday Dean's platelets were 5, so at 7:00 a.m. this morning he is going to Mease Dunedin for a transfusion of PRBC and platelets. His hemoglobin is also low.

It feels like the transfusions aren't really helping, so Dean is becoming discouraged. He is still so very weak and short of breath, he is eating, but very little. After the bad news yesterday from Moffitt, he has told me he doesn't want to continue any treatment, but hopefully this morning he will feel differently. It is his decision, although we talk about it together, I want Dean to be the one to tell me what he wants to do.

I hope you can do the clinical trial in Johns Hopkins, Dean really wanted to be a part of the one at Moffitt.

I really wish it would have been better news for both of you.

We will keep you in our thoughts and prayers. Thank you for writing and letting us know how you are doing.

Sending you lots of love, hugs, faith, hope, prayers and some smiles.......:)

Patti and Dean

Bob, Hopefully the aggressive transfussion plan get get your counts up high enough so if u deside to go the trial route it wont knock you down to bad, have they told you what medication the trial consists of ? Do you have a port ? We are praying for ya'll.....Billy and Tina