Going to NIH for evaluation

[Al's Wife]

Well, we've finally heard from NIH and Al is scheduled to go there June 5th for evaluation to see if he qualifies for the Eltrombopag (Promacta) trial. As y'all may remember he was on Watch and Wait after his three previous treatments did not work (Vidaza, and two other clinical trials). His platelets are going down fairly rapidly. They were at 16,000 last week. His red and white cells are still holding near normal, thank goodness. Fortunately, he has no bleeding issues, for which we are truly thankful. I asked the doctor last week when we would need to begin transfusions and he said not until he starts bleeding. He said everyone is different, and hopefully Al is one of the few whose body adjusts to these low platelets. But I confess that it is scary and I worry about him constantly.
Thank all of you, especially Sally, who was instrumental in making us aware of this trial at NIH.
Now we are just praying that (1) he gets in the trial; and (2) it helps his platelets.
We were at the seminar in Atlanta last Saturday and there are a number of things that look very promising that are in research. So, like all of you, we keep hoping and praying for that cure.
God bless all of you and thank you all for your prayers and support.
Linda

[DanL]

Wishing you and Al the best!

[Sally C]

Hi Linda and Al,
How very rewarding to me that my posts have helped you and Al find a clinical trial.
As of today Don's platelets were 105,000. They are probably going to drop the Promacta again this Thurs. to 75 mg. - half the dosage of what he has been taking since March, 2011. I think it is feasible that he may actually be able to come off it completely as they seem to be holding above 100,000. As you know they are trying to get his platelets below 100,000 out of concern for clots.
Linda, Don's platelets got down as low as 4,000 at one point and stayed in the teens for a couple of years. He never had a bleeding episode due to platelets. He had what was eventually diagnosed as ulcerative colitis that caused rectal bleeding but that hasn't been affected one way or the other with his platelets in the 100,000's. Also our Dr. told us she has patients that stay at the 1,000 level and do fine. The body is an amazing machine that can adjust to much less than what is "normal".
You will love the people at NIH. They are so accessible and efficient - and NIH is on the cutting edge of hematology.
Thank you again for your kind words. It has made my day that my posts may have been of help to you.
God Bless and please keep us posted.
Sally

[DanL]

Sally,

Not sure if you have ever discussed an IVC filter with Don's Dr. They are filters that break up blood clots before they get to the heart, lungs, or brain. They can be added prophylactically for people at risk for clotting and are an outpatient type procedure. Just learned about these a couple of weeks ago, but they are highly recommended by vascular surgeons for people at risk of clots.

[Sally C]

Thank you Dan. I have heard of these but had forgotten about them. If Don gets off the Promacta I don't think it will be an issue but will certainly keep in mind. Thanks for the information!
Sally

[Sally C]

Hey again Linda,
May I make a suggestion if you and Al do enter the clinical trial? Everyone who enters the grounds of NIH goes through a very thorough security check. Your person, any bags you are carrying, and everything in your car. Sometimes the cars can be lined up. Since being in the trial entails frequent visits to NIH I would suggest your asking for a permanent pass so all you have to do is show it and by-pass the security check. It is invaluable. They are good for a year at a time.
Again, best of luck and God Bless. Keep us posted. And if you have any questions that I can help you with please feel free to contact me - either through the forums or my e-mail - shcalvert3@aol.com.
Sally

[Al's Wife]

Dan - Thanks so much for your encouraging words.

Sally - We so appreciate all the info you have provided and this last one we will certainly do. I'm already getting apprehensive about the time and being sure we get to NIH by 7:30 a.m. on Tuesday morning, June 5th. We are flying in on Monday and not renting a car. From what I've seen so far, the shuttle doesn't run early enough to get us there on time, so we will probably just catch a cab this first time. We are staying at Hyatt Regency Bethesda and there is conflicting info online as to how far that is from NIH. Of course this first trip is going to be a learning experience and we are just hoping that we will be coming back again and again and again. Barbara said it would be a couple of weeks after the bone marrow biopsy before we would know if he will be able to participate in the trial.
As I've mentioned before, my husband is the "ostrich" patient, who buries his head as if nothing is wrong. So I had a bit of a pity party today as it is all so overwhelming. And I'm thinking to myself, what if I make the wrong decision, what if, what if, what if ....
I know I need to have more faith, and I'm trying, but today has been rough. Of course getting the packet of papers from Barbara with all the consent forms today didn't help a lot.
I will keep in touch with you and please don't hesitate to offer any suggestions. I welcome any and all the help I can get.
Best regards to all,
Linda

[Sally C]

Hi Linda,
I sent you a private message but will answer on the forums as well in case it could help someone else.
All the consent forms are very daunting. They cover all possibilities of potential problems like all drug literature does. It can scare you to death. Don took a very active role in the decision making - he had the last say - which made it easier on me. It sounds like you are the decision maker and so the responsibility lands on your shoulders. Take comfort that NIH knows what they are doing. The #1 hematologist in the world is over that department - Dr. Neal Young. NIH is on the cutting edge and takes every precaution to protect and care for their patients. They are thorough in everything they do as you can see just with the paperwork. And they are also there for any questions and to help with any concerns. I e-mail them all the time - Barbara is wonderful. You will not feel alone as they do everything they can to help with decisions and answer any and all questions.
We always stay at the Hyatt as well. It is the best hotel there and isn't very far from NIH. They do give an NIH discount so be sure to ask for it. It can be convoluted to get to NIH due to the layout of the streets so I'm glad you're taking a taxi. I would leave at 7 or shortly after to get there by 7:30 as it is downtown Bethesda and during rush hour traffic.
I know how hard it is sometimes to keep the faith but you are doing the best you can and that is all you can expect from yourself. As with all of us in this situation - you make the decisions based on the information and recommendations the doctors give you but as you know - ultimately it's all up to the Great Physician anyway so try to take some of this burden off your shoulders. You are never alone.
I hope we'll get to talk soon. I'll do anything I can to help you with this situation.
God Bless,
Sally
p.s. Pity parties are good sometimes!