Trying to understand what comes next.

[Mydad]

I have a few questions which I am hoping someone has experienced and know what to do if anything.

My dad is 76yo; he was diagnosed February 2011 with MDS, Refractory anemia with excessive blasts. He started viadaza immediately in 2010, and continued until February 2012 when it stopped working. He started on Dacogen in March of 2012 and stopped this Chemo in May, he was experiencing every side effect, and the sores in the mouth were the worse. He spent 6 days in the hospital in May for pneumonia, at this point is when he decided to stop and the doctor confirmed that the dacogen was not working.

With being released from the hospital doctor strongly suggested Hospice. This was extremely hard for us to consider due to the fact that he is very mobile, still baths and feeds himself. There are even times he still weed whacks and cut the grass. When I asked the doctor about this, he said that there was nothing else they could try to help or cure the MDS, and that we will need help in the coming months. He had also stated that we probably had 3 months left with my dad (which we DID NOT tell Him this information). Which again seems so unreal due to the fact he is still himself with the exception of being exhausted all the time, and his legs aching continuously. So at this point hospice comes in about once every other week just to check on him.

He still gets labs every Monday, and the Doctors office calls with results, and sets up the transfusions for the next day if needed. He is receiving blood transfusions about every other week, but his red's don't ever get above 7.4, his whites for the last 2 months are ranging from 1.1 to 1.0, and his platelets are 11 - 8. Today after getting labs, they couldn’t stop the bleeding of the injection site, I am sure this is due to the platelet count of 8.

My questions are:
Does anyone know how to increase the platelet counts? Will they ever go back up? He is bruising more severe than ever, well they say it’s not bruising its patches from the low platelet count, has anyone else experienced this?

I just can't imagine my dad dying anytime soon due to the fact other than what I have mentioned above he is fine, talks, eats, walks around, etc. Has anyone else experienced anything like this?

[contie]

I know what your going through. Sorry to hear about your dad. My prayers are with you and your family.

My dad is 81 and has the same thing. They tried treatments and nothing worked. He was getting blood and platelets every other week. He was diagnosed last November. His was active as your dad. Then he slowly started slowing down. The last month his transfusions began more frequently and we just found out last Tuesday that he can't get anymore transfusions and that there is nothing else the doctor can do. The doctor has turned him over to Hospice care. He is mostly tired and in bed sleeping. They are giving him meds to keep him comfortable and that's it. So we are just spending as much time with him as possible. It's like the doctors sent him home to die.

Connie

[Mydad]

Hi Connie thank you for the prayers our family will do the same for yours. It is just heart wrenching to watch. I just can't understand.

Did they stop the transfusions because of the iron? I have been worried about the iron build up with him, but the doctor said unfortunaley that is secondary, it is the lesser of the two evils, MDS being the 1st. Our doctor had told us that giving up the transfusions is the worst part, because patients believe this is what is helping them. He is said it's the opposite they use the tranfusions at the beginning of chemo to trick the body into thinking their blood is good until the chemo starts working.

I wish the best for you and your family.

Thank you again!

[milliken2]

My Dad & Contie;

There are no actual chemical drugs that increase platelet level. The only way to do that is through a platelet transfusions. Regarding blood transfusions - is the Doc stopping them because you father wants that? As far as I know, there is no limit to the amount of blood you can receive for transfusions - my husband has had 160 units of PRBC's since the middle of August 2011. He received Desferal after each PRBC transfusion to get rid of the excess iron that has accumulated. They are also looking into putting him on Exjade - another iron depleting (chelating) drug. But, from the research I have done, it doesn't seem to be the right drug for him. It says in the precaution area that it should not be given to persons who are anemic, or with low platelets - both of which Earl has. I am going to have to talk to the Doctor about that.
Earl is tired a lot of the time, but does receive platelet transfusions as needed. His platelet level ranges from a low of 6,000 when this all started, and we have only gotten up to a high of 43,000. Normal platelet level for an adult healthy male is between 140,000-150,000. They consider it to be a critical low - at least here if the platelets get below 20,000. The platelets are what causes your blood to clot - and also the reason both of your fathers' are getting ecchymotic (bruises) areas or smaller purlple spots called 'purpura'.
Do either of your Dads get a Procrit pr Aranesp? If so - check the dosage, and the frequency.

Hope all are doing better today.
Beth

[Sally C]

Hi My Dad, Contie and Beth,
I just wanted to mention the Promacta (Eltrombopag) clinical trial at the National Institutes of Health in Bethesda, Md. I won't go into much detail here as my husband's success in it raising not only his platelets but his red cells is written in great detail under "Clinical Trials". I do know it's against the protocol if there are high blasts but Moffitt in Fla. has a clinical trial for Promacta as well and will take patients with high blasts as someone on the forums has found out. I mentioned this to NIH and they said that Moffitt probably is accepting patients with high blasts due to NIH releasing their findings a few months ago where they have found that Promacta has not increased blasts in their trials.
For anyone with low platelets and low blasts please check this out as NIH is still recruiting for the trial. My husband had such success they have had to take him off of the drug out of concern for clots because his platelets wouldn't go below 100,000 while he was on it. He tolerated the drug extremely well and has had none of the potential side effects in his marrow or with blasts.
Good luck and God Bless,
Sally

[bebop]

I am sorry you 2 are going thru this. I went thru it last year with my dad. It is difficult once they stop transfusions for the family and the patient. I cried every day for a year once Dad was diagnosed. He lived almost 13 months after his dx.

[Greg H]

Hey MyDad!

I would definitely recommend getting your Dad evaluated at NIH or Moffitt for the trial that Sally C recommended. As Sally notes, he may not fit the NIH criteria because of high blast count, but they are closer to you and might have another trial to recommend.

Here's the thread on Sally & Don's experience.

Here's the NIH trial.

Here's the Moffitt trial.

Given your Dad's activity level, he sounds like a fighter; I'd definitely do a trial before throwing in the towel.

Take care!

Greg

[CrusaderForHim]

My Dad,

Please don't wait to spend as much time with your dad as you can. I know he seems better right now, but I have to be honest with you. When things start to take a turn, it is very quick. I know this from experience! I lost my dad Back on September 13, 2011. One day he was fine, the next he started running fever and was put in the hospital. Two weeks later we buried my hero! So please spend time with your dad and tell him everything that you have ever wanted to say, just in case there isn't a medication or trial that will extend your time together. And I am not writing to get you down or to diminish your hope, I just want you to take full advantage of the time you have. I pray for the best for your dad and your family!

Crusader

[ssdavi71416]

Has anyone sugggested Amicar for helping with the clotting? It is not a direct replacement for platelets but it helps with clotting. I have been on Amicar for about three months due to low platelets (7-9). I wish you and you dad the best!

Scott

[Al's Wife]

MyDad - I too agree with Sally and Greg that if you could get your Dad seen at one of the other facilities they might have something to offer. My husband is on his third clinical trial after having no response to Vidaza. I'm hoping if he doesn't respond to this third trial that maybe they will try Dacogen. The doctor at Moffitt (we've been to Emory in Atlanta; M. D. Anderson in Houston; NIH in Bethesda, Maryland; and now Moffitt in Tampa - and we're NOT giving up) has indicated that may be our next option IF this clinical trial doesn't help.
My husband also has very low platelets and while there have been some disagreements between his doctors about taking Amicar, they have all now concurred that when his platelets are below 20,000, he should take it. He presently takes two 500 mg. tablets twice daily, but the doctor at Moffitt said if he starts to bleed, he could actually take more than that while we are on the way to the emergency room. Evidently my husband's body adjusts to the low platelets as some people bleed out when under 20,000. Al's platelets have been nonexistent and he still did not have active bleeding, except for the blood blisters in his mouth, which the doctor informed us is considered bleeding. But he took the Amicar and the blood blisters cleared up very quickly. So as Scott suggested, you might want to check with his doctor. The generic of Amicar is Aminocaproic Acid and that is what our insurance covers.
This disease is so different in every patient and there is no "one size fits all," so all we can do is suggest and share what we've learned and what has worked or not worked.
Hope you are able to find some answers that will help your Dad and that he will respond to. But please don't give up and know there are lots of people praying for you and your Dad.
God bless,

[Mydad]

THank you everyone this weekend has not a been a good one. Dad has been in bed since yesterday, only getting up once in a while. When he gets up he is extremely dizzy, and everything looks foggy (His words). His stools this morning and evening were black and tarry. Which is scaring us very, very much. He is very weak, and pale. We contacted hospice and one of the nurses came today, she said there was little they could do, but she did call his doctor and they called him in a cream for his rectum,, which was strange because he is not having trouble going.

Has anyone else experienced this type of stool? I know this is a strange question to be asking.

His blood pressure is going up and down. At one point today it was 99/54 and the best one we got was 110/65. His temperature is ranging from 97 - 99. He is complaining he's freezing and has the chills and it was 87 in the house, then he was complaining he was hot. I am thinking another infection is setting in, I just hope I am wrong it took so long the last time he had pneumonia to get him better which was May 29th, and he didn't leave the hospital till June 4th.

Thank you again everyone, this forum has been a god sent...

[maria&lola]

I am sorry to about your dad. I hope his condition improves and that you find another course for continued treatment.

As for the black tarry stool...seems like they have asked my mom if she's had any a zillion times trying to determine if she was having any blood loss occurring in the intestines. She never had it and I don't know what else causes it.

I will keep you both in prayer.

[Chirley]

Hi, black, tarry stools are a sign of bleeding from the GI tract. Usually further away from the rectum because blood from the lower bowel, rectum, anus tends to be more blood colored. The cream may be to prevent a sore bottom in case he starts having diarrhea.

Sending you my thoughts and good wishes.

Chirley