New to forum - What comes next

[Mydad]

Hello to all -

I am hoping that I am posting this in the right section.

My dad who is 76 was diagonised 2/18/2011 with Refractory Anemia with Excessive blasts, he started Vidaz on 2/21/2011. His blood counts at the time of starting Vidaz were, WC: 2.1, RC: 10.2, Plalets: 37, they have either stayed around the same or drastically have went down. He has had blood transfusions 4 times within the last year. As of last Monday (He goes every Monday to give blood, with results given to him with 3-5 hour time span) is blood count was WC: 1.5, RC: 8.6, Plalets: 22. He has been hospitalized twice, with the last stay being 3 days in 2/2012. The doctor on the initial diagonies told us he will have to do this for the REST of his life. There are no chances of remissions. Not sure what that means, I mean I think I know what it means, but maybe I dont want to think about it. I just dont know.

With his last stay the Doctor had told us that he believes that the Lukemina has went to the next stage. I asked the Doctor what he meant, he stated that there were no other stages, and if the Vidaza was not working he had one other drug that he could adminster (Dacogon), but he stated that he really didn't believe that it would do anything, but prolong things, What does this mean???

My dad is ALWAYS tired, his legs are always aching. For him to walk from one area of the house to other is a daunting task for him at times, and this is what he tells us, I am sure there are other things that bother him, but he doesn't want us to know. This past weekend he was in bed for two days, he was so constipated, tired, and in so much pain, he couldn't get out of bed. When he did try to get out of bed he was so dizzy, and pasted out twice on my mom, literally was out.

I guess what I am hoping for is someone to tell us what we can expect from here. Will there be more hopsital stays, more times where he can't get out of bed? Is this what we have left? His doctor is pretty direct sometimes, but other times he is very vague, not sure why. We just want to know what to expect from here. Maybe we aren't asking the right questions to the doctor, for him to give us the answer.

Thank you!!!

[Birgitta-A]

Dear Mydad,
MDS is a severe disease and MDS with excessive blasts is always difficult to treat. Vidaza has probably helped your dad since he only needed blood transfusions 4 times during last year.

When we have MDS we can get low hemoglobin (HGB), low white blood cells (WBC) and low platelets. For low HGB we can get blood transfusions, for low WBCs we can get Neupogen or a similar drug and for low platelets we can get platelet transfusions or in some cases a drug called Promacta.

Infections and bleedings are dangerous for MDS patients. It is important to try to avoid infections and all kinds of drugs that can decrease platelets. All painkillers can decrease platelets but since your dad's legs always are aching he probably has to take painkillers.

If Vidaza isn´t working any longer your dad can try Dacogen as your doctor said. Other drugs are Revlimid or Thalidomide.

It is true that patients with MDS that are too old or have too severe other diseases for Stem Cell Transplantation can only try different drug och hope for a response. If you read Kirby Stone´s history you will see a patient with severe symptoms from diagnosis who has fighted MDS during many years.
Kind regards
Birgitta-A
73 yo, dx MDS Interm-1 2006. Transfusion dependent from dx. Have received 142 unit of blood. Good response after treatment with Thalidomide + Prednisone

[Sally C]

Hi MyDad,
The only thing I can offer is to make sure your Dad's doctor is an MDS specialist. You aren't terribly far from the National Institutes of Health in Bethesda, Md. and I'm sure there are specialists closer to you than NIH. Maybe others can suggest somewhere closer to you that your Dad could go to.
Best of luck and God Bless,
Sally

[Mydad]

Thank you for your replies. Dad received his blood counts yesterday and they are down again, looks like another blood transfusion this week.

Do you know how many transfusion one might be able to get before it is dangerous? I have asked the doctor, but his answer is we are far away from that, we will worry about it later. He doesn't give us an actual answer or number.

Thanks again, this forum has been awesome!!!

Have a blessed day

[Neil Cuadra]

Mydad,

According to the Iron Disorders Institute:

After as few as 10 blood transfusions the signs and symptoms of iron overload can be seen in some people. It is important to be aware of this and discuss with your doctor a plan to lower excessive levels of iron as part of your therapy to achieve iron balance and adequate levels of red blood cells.

Some patients don't need treatment for iron overload for years, but others do much sooner. Excess iron is like poison in the body, a threat to organs, so you can't ignore the issue for any patient receiving regular blood transfusions. Your dad should have his iron levels monitored so it will be clear if and when treatment for iron overload becomes necessary.

[bebop]

hi mydad and welcome to the forums. unfortunately this stuff is not predictable at all. my dad had weekly transfusions almost from the beginning. he probably had well over 200 with no ill affects on him. no iron overload as one might expect. however towards the end he had to have many many plt transfusions along with weekly blood transfusions. in the end they stopped working all together. good luck hon. I am here for you as well as everyone else here.

[usaf1125]

Hi, MyDad
Welcome to the Forum, MDS is a strange condition, it affects every one differently. The major effect of the transfusions is iron overload, which is not to good by itself. I have had 288 units of blood since July of 2003, with no problems. I get tired very easily, and my legs hurt quite a bit, walking is not easy. My Doctor specializes in Hematology and Oncology, that is the key , you must have confidence in your doctor. Best of luck, keep positive don't let MDS rule your life. My Wife had breast cancer 33 years ago, it came back, May 2011. She's doing great, you will also, fight, fight , fight.

[Neil Cuadra]

What's the explanation when patients receive hundreds of transfusions without a buildup of excess iron? Does anyone know?

[usaf1125]

never heard of any one that didn't get overload after 10 or 15 units. My level kept increasing. It took almost 4 years after I started on ExJade for it to drop below 3000.

[bebop]

Neil just my opinion that if the marrow is not making the red blood they just die off too soon to accumalate the iron. dad's dr never said why he didn't get overloaded but that is my thinking.

[triumphe64]

Originally Posted by bebop

Neil just my opinion that if the marrow is not making the red blood they just die off too soon to accumalate the iron. dad's dr never said why he didn't get overloaded but that is my thinking.

I have only had sixteen units. I don't make red cells, and my ferritin is elevated.

Here is something from Wikipedia.

"Immune response

Ferritin concentrations increase drastically in the presence of an infection or cancer; this is necessary to counter the infective agent's attempt to bind iron from the host's tissue.[15] The inflammatory response may cause ferritin to migrate from the plasma to within cells, in order to deny iron to the infective agent.[15]

Stress response

The concentration of ferritin has been shown to increase in response to stresses such as anoxia;[16] this implies that it is an acute phase protein.[17]"

[Birgitta-A]

Hi Neil,
I have never read an explanation to why some patients don't get iron overload though they have received more than 100 units of PRBC (packed red blood cells). One reason can be some kind of bleeding that not is detected. Another explanation could be that their liver is working very well. I received 40 units of blood before my ferritin level was more than 1000 and I had to start chelation.

Then we should be aware of that patients with higher-risk MDS often don't get chelation therapy. It is much more important for them to get drugs like Vidaza, that hopefully will help the bone marrow to function better, so the counts will increase and the blast cells will decrease.

We can have iron overload many years before the liver and the heart are damaged. My ferritin level has been 5600 without increased liver tests.
Kind regards
Birgitta-A

[cathybee1]

Birgitta, your suggestion about the connection between iron overload and the liver is very interesting. Bruce's liver was compromised long before his anemia and neutropenia began. And his ferritin level increased quickly after he began transfusions.