[Teresa]

Jack;

This applies to anyone else with low platlets. If you are having problems with bleeding, take alfalfa pills. It really helps with the clotting.

Teresa

[Teresa]

Jack;

Congrats on your counts. I hope that you continue to get better. I have not been on the site since Aug. I took Mom to OMA for check-up and to find out why she was in and out of the hospital all summer with fevers. We found out (unfortunately to late) that her gallbladder was rotten and she had congrestive heart failure. Why this had never been pick-ed up at our local hospital, I will never know. Maybe it just wasn’t meant to be.

We finally got Mom strong enough to handle the gallbladder surgery after 2 wks of antibiotics. She did really well for 48hrs, then everything started shutting down. She ended up with bacteria in her port. We gave Mom back to the Lord on Sept. 29.

I had talked to you several times about Zanestra. We were going to give it a try once Mom got stronger.

Please do not leave the form. Trust me, alot of people do read and research the options that people such as yourself post. Not all of us respond to the posts though.

I do wish each and everyone of you and your family members affected by this disease all the luck in the world. I hope at some point in time we all will be able to read post after post saying that there is a cure. In the mean time keep up the fight and the flow of information.

Teresa

[Teresa]

My Mom was running a fever off and on for 3 months. Was on antibiotics 2x and the fevers would go away. They came back and testing showed her gallbladder needed to come out. Something to think about.

Teresa

[Teresa]

You are right the cost is staggering. My Mom received both Vidaza and Revlimid. We were given the names to different foundations that help pay for for the treatments. Then Mom Medicare picked up the rest. You need to as your Dr or their assistant for the foundations that are available for aide.

Good Luck

Teresa

[Teresa]

Congratulations!!!

That’s wonderful news, keep up the good work with your counts. I am going to ask my Moms DR about the Vorinistat. She had tried the Vidaza but the results where short lived.

Teresa

[Teresa]

Hi Neil;

Mom is 76yrs, her Dr. is Dr. Maness in Omaha, NE, she is a MDS specialist. We have tried both Procrit and Aranesp. The Procrit helped for a few months and the Aranesp made her very ill and weak. She had both meds 3 yrs ago.

If you have any other ideas, I am open

Thanks for the response.

[Teresa]

Lillian;

My Mom has been receiving transfusions for 3yrs, and just resently started having a temp and chills. They are pre-medicating her with Benadryl and Tylenol. That is working well, does make her drosy for about a day. You might want to ask about pre-medication.

Good luck

Teresa

[Teresa]

What is the trial that you are participating in?

My Mom is 76yrs and is RAS, transfusion dependant, has tried all the latest drugs with no success.

She is really struggling with her energy level. If anyone has any ideas to help with that I would appreciate hearing them.

Good Luck with your Great results

Teresa

[Teresa]

Maureen;

My mother is RAS and has been receiving Neupogen for two years 2x a week. It has been fantastic, keeps the white count up without any problems.

Keep asking questions and best of luck to you

[Teresa]

Alex;

I am so sorry for your loss. My mother has MDS, and is transfusion dependant. I can not bear the thought of losing her.

But I know that the peace of God and the love of family and friends will sustain through the days and months ahead.

You are in my thoughts and prayers

[Teresa]

Campbell

May the Lord grant you peace. I can’t imagine the pain that you are experiencing. You and your family will be in my prayers

Teresa

[Teresa]

Patti;

I am sorry for your loss. Thank you for the info. I talked with my Mom this weekend about trying alternative medicine.

May God Bless you and your family

[Teresa]

Thanks for the replys. My Mom is RA, she only has the red cells affected. Today was a good day her HGB was a 9.6 and she won’t have to have a transfusion this week. First time in three weeks. So that is nice. Dr. Maness in Omaha has said that she is at the low end of the MDS, and her bone marrow has not change in 2 yrs.

Currently, she is battling the flu. But seems to finnaly be getting enough fluids to help.

Thanks again

[Teresa]

Best of luck to you and your Mother. Stay involved, and be her advocate. If you think your overwhelmed, imagine how she feels

[Author]

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