Haven't been here in a while - self explanatory

[milliken2]

Well- it has been one nasty week for sure. We went last Friday to see Earl's APS Doc in Pittsburgh. He has been so weak, and the Dr.'s office is on the ground floor of West Penn Hospital in Pittsburgh. I dropped him off at the entrance, and went to park the car in the parking garage since it is quite a hike from there to the Docs office -one of those use the skywalk, up one elevator - down a long hall - down another elevator then a couple of more long halls to walk. So, in essence, it took me about 15 minutes before I got there. As I was walking down the last long hall - I saw the nurse that works for our hema there, and she had this terrible look on her face. Long story short - Earl went to the bathroom and when he tried to get up, he tripped on his suspenders, and went head first into the wall. Managed to get himself VERY bruised and battered - and they had to have maintenance unock the door since he had the key to get in inside with him. The 'rapid response team' came - and he was put on a gurney and sent to the ER. Ended up with a CT scan of his head and neck, and a chest Xray - and had to stay for a 24 hour observation. Got one unit of platelets in the ER, and when he got to the floor, got another 2 units of PRBC's - this makes 194 units since 8/13/11. Drew his blood in the AM - and his platelets were still only 13, so he got another bag of platelets. He is really stoved and sore - and the bruises are terrible.

Yes - we got the camera swallow done on Monday - will have to wait at least a week before any results are in, and maybe even 2 weeks. Went yesterday for a blood dtaw, and his platelets were only 6,000 - so he got platelets again. His Hgb was 8.6 - one tenth of a point above transfusion level, so we will need blood by Friday for sure. He is continuing to lose weight - in the hospital - he weighed 180 in their bed. He weighed 295 in June of 2011. He has no appetite, even on Marinol, and I am at a loss. His white cell count was 0.6 - so he is VERY prone to any type of infection. He gets mad when I ask him to wear a mask - like when he went for his blood dtaw yesterday, but like I told him, he needs the protection.

We are headed back to Pittsburgh today - to go to the Hillman Cancer Institute - to see if they have any other direction for us to head. They have had good success with stem cell transplants on MDS patients - but like his Dr. said last week, he would have to get much stronger before anything would be done. I have also sent his records to the NIH, but so far, have had no response from them.

He is so weak, that I don't think he could even make the trip to Florida this year. And I a not looking forward to spending a winter here. But, he is more important than me keeping warm. so whatever will be will be.

Hope everyone else is doing better.

Beth

[Neil Cuadra]

Beth,

I'm very sorry to hear about Earl's fall. No matter how much you stand by to help, nobody can watch somebody else 24 hours a day. We always hope to be lucky enough to be in the right place at the right time, but you just weren't that lucky on Friday. Don't feel guilty; these things happen, and not only to you. I remember four times that my wife fell or almost fell from weakness. We were just lucky that there was somebody right there each time.

Are you asking about Earl's lack of appetite at Hillman? He's not going to get his strength up without fuel. Perhaps a nutritionist or other specialist can help.

[bebop]

praying for you and Earl. I know how tough this is to go thru hon. ((((hugs))))

[PattiDean]

Oh Beth, it never gets easier. You and Earl have been through so much, and now this.

We are keeping you and Earl in our thoughts and prayers! I do wish there was something I could do, you are always the one that is here for us!

Sending lots of hugs to you and Earl.

[milliken2]

Neil & Bebop;
Thank you both for the encouragement.

Neil;
Earl has been on Marinol - 10 mg twice a day, and I really can't see where it has helped. I asked the Dr. about Megace and if it would be any better for him, and he said No - that Marinol is actually better - and that he just has to start eating - whatever he wants, he can have .On the way home today, he said he was hungry for chicken - and I made it for him (or I should say I bought it at his favorite restaurant) and by the time we got home - he said he wasn't hungry. He ate a couple of bites, and that was it. I am a loss.

Beth

[Birgitta-A]

Hi Beth,
Too bad that Earl is so weak and had a serious fall! Still it is positive that he didn't get any fractures or a brain bleeding with his low platelet count. Hope he will be able to force himself to eat!
Kind regards
Birgitta-A

[cathybee1]

Beth, it's so good to hear from you, wish Earl and you both a respite. And why not give Megace a try? Anti depressants helped my mother regain some interest in food. Everybody is different.

[Sally C]

Dear Beth,
I am so sorry to hear of this latest news in Earl's long, difficult saga. You have both been through so much!
When we were at NIH in Oct. I mentioned Earl to the research nurse. She said she had a stack of patients wanting to be seen that was 3 inches thick and I remember thinking it may be a while before you hear. I hope they will get in touch soon and agree to see Earl. As always - if that happens - please feel free to call on me with any questions you may have.
God Bless you both.
With love and (((hugs))),
Sally

[Lori Patrick]

Beth, I have you and Earl in my prayers.

[MagicBob]

Hi Beth,

I sent an email to you this morning, and just read your post of Nov. 14th, and so sorry about your husband's fall.
You both are in our prayers.
When you get a chance, how about a response from the email that I sent earlier today.

MagicBob

[milliken2]

Bob;
I never got your email - please resend. Sorry for not replying earlier.

Beth

[milliken2]

Everyone;
Thanks so much for your concern and prayers. They are more needed than I can tell you. Earl is now unable to get up from a sitting position by himself, and just keeps getting weaker. I had to do another wardrobe change today for him, and he is swimming in the clothes I bought him less that a month ago. He got 2 units of PRBC's and one bag of platelets today.
They called from the GI office - and said he had no remarkable findings from the camera swallow and that they would consider him negative for any type of bleed. I was actually hoping that they would find something that could be 'fixed' - but no such luck.
The Dr. wants to put him on Revlimid starting next week when he is getting his Vidaza. I got a call from the 'consult nurse' at Celgene - and she tells me that the side effects can actually make him worse - that he could have either a drop in platelet level - and he really can't afford to get any lower - they were only 7,000 today - and he had had a 6 unit bag of platelets on Monday. She said it could also cause a blood clot - which scares me since he previously had APS - Antiphospholopid Antibody Syndrome - or Hughes Syndrome - and for years was on an injectible anticoiagulant. Either way - I am not sure if it is a good idea.
Beth

[Birgitta-A]

Dear Beth,
Revlimid will often decrease platelets initially as you are aware of and is perhaps not an option for Earl now. As far as I understand there is no risk for blood clots in connection with Revlimid when the platelet count is so low.

We can only hope vidaza will have a positive effect.
Kind regards
Birgitta-A

[Al's Wife]

Beth,

You and Earl are certainly in our thoughts and prayers. Since the doctor told us on August 17th that Al's MDS had progressed to AML, his platelets have been nonexistent. But since he has had no bad bleeding problems, they don't give him platelets unless he REALLY needs them. He has had petichae (sp?) on his legs really bad and blood blisters in his mouth from time to time, which the doctors say is considered active bleeding, but they still did not give him platelets. So I'm just wondering why some people get platelets regularly even if they don't hold and others (like my husband) don't get them unless they actively bleed out.
Last week he was bleeding internally and we went to the GI doctor who said that basically he would do nothing at this point because it would put Al at worse risk. They did transfuse platelets and, thankfully, the internal bleeding has stopped for now.
No one could have prepared any of us for this, so we have to just live day to day and pray for God's mercy and strength.
I am just thankful that the Emory doctor's words that he had "weeks not months" did not happen, and I am so thankful that Al and I have been able to enjoy some wonderful times together since August. We have actually been on three trips since August 17th and just had Thanksgiving with lots of family present. So we are truly blessed.
Al will start his fourth cycle of Dacogen in the morning but so far we can see no benefits but I'm not giving up. We'll have the all important bone marrow biopsy on December 17th.
I hope you and Earl will be able to find some good days ahead. Believe me, I know what you're feeling and there are no words that can help, but please know that I'm thinking of you and praying hard. As a wife and caregiver, I know you are worried, exhausted, brokenhearted, stressed to the max, and need to be about ten different people. But you have to take care of yourself. At least that is what everyone keeps telling me.
Thinking of you and praying for better times.

[PattiDean]

Originally Posted by Al's Wife

Beth,

You and Earl are certainly in our thoughts and prayers. Since the doctor told us on August 17th that Al's MDS had progressed to AML, his platelets have been nonexistent. But since he has had no bad bleeding problems, they don't give him platelets unless he REALLY needs them. He has had petichae (sp?) on his legs really bad and blood blisters in his mouth from time to time, which the doctors say is considered active bleeding, but they still did not give him platelets. So I'm just wondering why some people get platelets regularly even if they don't hold and others (like my husband) don't get them unless they actively bleed out.
Last week he was bleeding internally and we went to the GI doctor who said that basically he would do nothing at this point because it would put Al at worse risk. They did transfuse platelets and, thankfully, the internal bleeding has stopped for now.
No one could have prepared any of us for this, so we have to just live day to day and pray for God's mercy and strength.
I am just thankful that the Emory doctor's words that he had "weeks not months" did not happen, and I am so thankful that Al and I have been able to enjoy some wonderful times together since August. We have actually been on three trips since August 17th and just had Thanksgiving with lots of family present. So we are truly blessed.
Al will start his fourth cycle of Dacogen in the morning but so far we can see no benefits but I'm not giving up. We'll have the all important bone marrow biopsy on December 17th.
I hope you and Earl will be able to find some good days ahead. Believe me, I know what you're feeling and there are no words that can help, but please know that I'm thinking of you and praying hard. As a wife and caregiver, I know you are worried, exhausted, brokenhearted, stressed to the max, and need to be about ten different people. But you have to take care of yourself. At least that is what everyone keeps telling me.
Thinking of you and praying for better times.

Linda it is so sad to read about Earl and Al, and know how very difficult it is for each of you.

Your post says everything I wish I could express. it was excellent.

Dean has been doing well for the last three months, but now his numbers are beginning to come down and he has needed a few transfusions. He is on Dacogen and it seemed to be helping for awhile, Dean went almost three months with no transfusions.

I am not able to get on the forums as often as I did. Dean goes to the doctor's office everyday for Neupogen and sometimes Procrit, and now transfusions, along with his Dacogan cycle, and my mother, who is 88, is now in heart failure. So both keep me busy. The end of your post about being a caregiver says it all.

Dean and I will continue to keep you, Beth, Earl and Al in our thoughts and prayers!

Lots of hugs!

Patti

[Birgitta-A]

Dear Beth,
How is Earl? We have not heard anything since Nov.
Kind regards
Birgitta-A