Should we give up the fight???

[Bryan]

My mom (76 years old) was diagnosed with RAEB-II Oct 2013, and went through 18 months Vidaza treatment till this April when Doctor said that the chemo did not work anymore. Early this month, her MDS progressed to AML.

She has extremely low PLT and HGB, and requires platelet transfusion twice a week and RBC transfusion once every two weeks. She has transfusion reactions twice this past month, requiring hospital stays.

She is currently at hospital, and the doctors think that she may never be out of hospital. With the transfusion as the only option to prolong her life, and the fact that she is getting weaker and weaker, should we stop the transfusion and give up the fight? We, including her, want her to live but we do not want her to continue suffer.

Really appreciated to hear others' opinions and past experience on the last days of the MDS/AML patient.

Thanks in advance.

[riccd2001]

These can vary from person to person. I had some mild to severe reactions when starting on this road in 2008. All such problems were ended by having a set of premeds BEFORE a PRBC transfusion. Also it's necessary for me to have CBC draws two days before transfusions so that a proper cross and type by the blood bank can find compatible donations.

Something to consider before giving up. Good Luck!

[bailie]

Bryan, It really is a personal choice. There is very little they can do after AML and Vidaza. I would listen closely to the doctors and your mother.

[bailie]

RCCD2001,

What have the doctors been doing for you after being diagnosed with AML? Vidaza? You have held together for a long time, congratulations!!

[Faye R]

I'm 72years old and would like to think that I could live to I'm at least 80years BUT and here is the BUT I have told my family that I want quality not quantity of life, I'm on Vidaza and I know that it is not the curer that we all want, I'm into my 11th month and still doing OK, there was a person here in N.Z. who went through Chemo and was told that nothing else could be done for him O.K. he was younger than us but he took maters into his own hands had V.C injections juiced with apples ginger carrots and beetroot did a lot of mediation now he has been given the all clear button, he was DX AML so what I have taken from that is if you are a fighter never give up. You would know your mum better than anyone else listen to her and try to read between the lines what she is not saying.

[Bryan]

Originally Posted by riccd2001

These can vary from person to person. I had some mild to severe reactions when starting on this road in 2008. All such problems were ended by having a set of premeds BEFORE a PRBC transfusion. Also it's necessary for me to have CBC draws two days before transfusions so that a proper cross and type by the blood bank can find compatible donations.

Something to consider before giving up. Good Luck!

Thanks Ric, and the doctor is considering to use the more compatible platelet now. In fact, she just went through a complete blood test yesterday, and we hope that there will be less reactions for the upcoming transfusion.

[Bryan]

Originally Posted by bailie

RCCD2001,

What have the doctors been doing for you after being diagnosed with AML? Vidaza? You have held together for a long time, congratulations!!

Thanks Bailie! The blood transfusion is the only treatment after diagnosed with AML. No more Vidaza since this April. The doctor mentioned low-dose of Cytarabine, but with mom hospitalized, it cannot be started as she is deemed too weaker for the treatment.

[Bryan]

Originally Posted by Faye R

I'm 72years old and would like to think that I could live to I'm at least 80years BUT and here is the BUT I have told my family that I want quality not quantity of life, I'm on Vidaza and I know that it is not the curer that we all want, I'm into my 11th month and still doing OK, there was a person here in N.Z. who went through Chemo and was told that nothing else could be done for him O.K. he was younger than us but he took maters into his own hands had V.C injections juiced with apples ginger carrots and beetroot did a lot of mediation now he has been given the all clear button, he was DX AML so what I have taken from that is if you are a fighter never give up. You would know your mum better than anyone else listen to her and try to read between the lines what she is not saying.

Thanks Faye and good luck with your treatment. Glad to hear your fellow's story. If mom could have more time, we are considering Chinese medicine. She will receive better-matched platelets in the upcoming transfusion, and hope that it works better.

[Neil Cuadra]

Bryan,

If it's available in your mom's case, the use of single-donor platelets, and repeated use of the same platelet donor, can reduce the chances of reactions to transfusions.

[Bryan]

Originally Posted by Neil Cuadra

Bryan,

If it's available in your mom's case, the use of single-donor platelets, and repeated use of the same platelet donor, can reduce the chances of reactions to transfusions.

Thanks Neil, and that's the option the doctor is looking at now.

[riccd2001]

Pre-meds used for me at Oakville:

2x25 reg tylonel oral; 2x25mg benadryl oral; 1x100ml hydrocortisone sodium succinate IV (DIN 00030600).

Also depending on number of infused units to deal with fluid overload, Lasix (furosemide DIN 00337749): 2 units - 20ml between unit 1 and 2;
3 units - 20ml between unit 1 and 2 and 20ml between unit 2 and 3.

Hope this helps.

Also I need to mention that times I had bad reactions both happened when I was in Emergency with low Hgb and the infused PRBC units were deemed "least incompatible" by staff docs.

[Bryan]

Originally Posted by riccd2001

Pre-meds used for me at Oakville:

2x25 reg tylonel oral; 2x25mg benadryl oral; 1x100ml hydrocortisone sodium succinate IV (DIN 00030600).

Also depending on number of infused units to deal with fluid overload, Lasix (furosemide DIN 00337749): 2 units - 20ml between unit 1 and 2;
3 units - 20ml between unit 1 and 2 and 20ml between unit 2 and 3.

Hope this helps.

Also I need to mention that times I had bad reactions both happened when I was in Emergency with low Hgb and the infused PRBC units were deemed "least incompatible" by staff docs.

Thanks Ric for the pre-med, and all the best.