Let the Journey Begin

[Fred4]

My Mother was approved for Vidaza today. Starts tomorrow. After 2 bmb(one at a backwoods SC. Hospital) we are getting a few results. Her Blast are at 6. I spoke with the ONC. this morning and he said that the first reports on the cell deformities looked like (in South Carolina) sheeat (profanity filter spelling). Having worked with Docs for over 20 yrs, I have learned that if you treat them like people insted of Gods, they will open up to you.

One thing that I am really worried about are her risk factors.
1) 74 years old.
2) Post tripple By-pass(2 years)
3) Chronic Renal Failure On Procrit for about a year.
4) COPD
5) Carodic Artery Surger(1 year)
She is a fairly healty mess.

He stated that most of his sucess came with patients post 2 years. No kidding!!!! He seemed to hint that we are not going to be looking at that.
Or maybe I just think that wilth all of the above factors, I am not looking at a plesant journey.
At this point, my Mother does not know what Vidaza actually is. It would not help to explain it to my Sister.
Guess I will be on here for a while. I request and look foward to all your advise nothing excluded. Any dietary advise?
This is not exactly a Forum that I would have chosen for fun. (I prefer Ski and Hiking). However, if you want to learn, you have to learn from the people that live it. Thank you again and sorry for the long post. As was in other Post, "Sometimes you have to vent."

[Al's Wife]

Fred,

Welcome to "our" world. Certainly one that none of us would have chosen for ourselves or our loved ones. I am relatively new to this forum, my husband having been diagnosed in May of this year with MDS. But I am sure some of the long-timers can shed more light than I can. I hope your Mother does well on the Vidaza and responds positively. My husband just started his 6th cycle and, so far, it is not working, but we are going to give it a couple of more cycles.
I am sorry y'all have had to join us on this rollercoaster ride disease. But we are all in this together and I have received so much support and great information from others here, and I know you will too.
God bless you and your Mother and sister.

Linda

[ann]

My husband will turn 74 on Nov 10. He was diagnosed with MDS on 6/30/09.
Next came COPD to move in with his heart problems. The ride has been rough at times but we have learned to enjoy the ups and climb out of the downs. He has had 16 rounds of Vidaza and it has been working. The oncologist said this week that she wants to put off his next chemo for a week. She thinks that it may be what is causing him to have so much trouble with his congestive heart and his lung problems. We do what we can, when we can but dragging an oxygen bottle around slows us down. He is having lots of trouble walking because of his heart. The cardiologist is working on this problem. Our social life is with the medical profession lol.
Keep your spirits up. Laugh when you want to cry but don't give up.
God bless.
ann

[cathybee1]

Welcome and sorry you're here! My husband was diagnosed in June. It's definitely a roller coaster ride. Bruce isn't on Vidaza (yet). When you first read about the disease and the side effects of the drugs used to treat it, as well as how long it takes to see a response, it's a downer to put it mildly. But as Bruce and I learn more about it, we have mellowed out a bit. No dietary advice from us other than when you reach a certain age, you should probably eat better than a teenager.

[Fred4]

Thanks everyone!!!!
I know that this is going to be a journey with MDS along with all of the pre-existing stuff. I am pretty sure that I will know all the blood chem stuff tomorrow. Her anemia is not a new thing ( several months). Procrit for over a year. Just going to do the best I can to keep things positive until things get positive.
I really appreciate all the support.

Linda, I really hope that you continue your positive attitude. We may all be strangers, but we are all in this together in one way or another. I am a Newbie. I don't know the people on this board . However, it exist, the people seem to be genuine and have walked the walk.

God bless you all,

[bebop]

Fred welcome to the boards. I am doing this journey with my dad. he is 81. he chose no chemo but is transfusion dependent. He was on the arnesp for about a year before his diagnosis. It is a roller coaster ride to say the least. If I can help in any way feel free to pm me. My prayers are with you and your family.

[Fred4]

First dose of Vidaza went fine today. Turns out that she is RAEB 1 5q and 7q. Dr. started her on 63mg due to her kidney problems. She will get another dose tomorow and get to come home.

[Fred4]

Had her 4th dose of Vidaza today. Her hbg was down to 7.5 so she will be taking 2 units of blood and one of platelets tomorrow. I just hope they can find a vein tomorrow. They seem to blow them out left and right.

[Neil Cuadra]

Originally Posted by Fred4

I just hope they can find a vein tomorrow. They seem to blow them out left and right.

I guess it's not the biggest issue in the scheme of things but it's just adding insult to injury when that happens.

But I'm glad the Vidaza treatment has started without serious setbacks.

[Fred4]

Well, Vidaza cycle 1 is over. They are not kidding when they say that Vidaza can really zap your Platelets. They were at 10 on Wednesday. One pack of Platelets and 2 units of blood. Hgb was at 7.4. Platelets were at 7 on Thursday. Another pack of Platelets. Platelets were at 4 yesterday. Guess what. Another pack to Platelets. Hgb seems to be holding around 10.4. I will meet with the Dr. on Monday to discuss a pic line until her Platelets get high enough for a port. She has always had bad veins it kills me to watch her suffer while they fish around.

[Fred4]

Well, this is indeed a roller coaster. Platelets at 7 HGB at 7.4. Bp 58/46. Need less to say she was transported to a major Hospital and admitted. Spoke with the Dr. and the PA seperately. They expressed the dire need to get the platelets under control. I left town Friday and returned Sunday. A friend was staying with her. It is shocking how you can go from feeling Great on Thursday, really good on Friday, to what I saw yesterday and today. Well ++++VIBES++++.

Fred

[cheri]

Hi Fred!
Here's hoping your Mom is doing ok....
They admitted her, like myself, as a precaution because when your platelets are that low, spontaneous bleeding can happen, which they can stop in a hospital setting, but at home would get out of control.
My platelets were down to 2k last week and not so much as a nosebleed or anything. I got 2 units of platelets at that point.
The platelet ride is a scary one because there are no symptoms--I've been going thru this for the past year....
Vidaza is not as hard as some other things out there...
I have been living on transfusions on this nadir phase after cycle 3 of Vidaza...is it working? Who knows....I'll wait until at least I finish cycle 4 before next bmb.....maybe 6 cycles.
I feel good and have relatively few other problems.
Hang in there and remember that we are all just trying to figure things out, one experience at a time!

[Fred4]

Almost lost her today. Called in the family. Not looking good for the home team.

[cathybee1]

Bad news, Fred. This has all happened very fast. I expect you and the rest of the family are emotionally spent. Thank you for keeping us posted.

[Al's Wife]

So sorry, Fred, that your Mom is having such a hard time. God bless you both. You are in our thoughts and prayers.

[launch]

Dear Fred,
I'm sorry your Family is having to go through this and so sorry to hear your Mom is having a difficult time right now. I will keep you in our prayers.

Hugs, Cindy

[Fred4]

The Journey ended tonight at 8:20pm. Family at bedside

[mausmish]

Fred, I'm so sorry for the loss of your Mom and realize it has all happened so quickly. It's good that her family could be with her at the end. May you all find peace in happy memories. Karen

[Neil Cuadra]

I'm so sorry to hear this news, Fred. Your presence in these forums and your messages showed us your dedication to helping your mother. She was lucky to have you on her team, and to have the rest of your family there.

There's little we can say to ease the pain of a loss like this, but I hope memories of your good times together will be the ones that sustain you now and in the future. Maybe you'll find peace by thinking of her when you are ourdoors skiing or hiking on a beautiful day.

[Gloria J]

Fred,
My deepest sympathies on the loss of your Mom. To lose one's parent is so devastating, and for it to happen so quickly is infinitely worse. Take comfort that you were all with her, and move forward with happy memories, not sad.

best wishes to you and your family,

Gloria

[ann]

So thankful that you and your family could be there with your Mother when she passed on. My mother passed away in '07 but not a day goes by that I don't have a memory of her. Sometimes I say things and almost hear her. Your Mother will be with you always. God bless you and your family. You are in my prayers.
ann

[cathybee1]

I'm so so sorry to hear this news about your Mother. But glad the family could be with her. And thank you so much for letting us know.

[Fred4]

Well, I think this is going to be my last post unless sombody needs information. My journey was short. Non descript infection post Vidaza with a health history that sucked. All I can say is give a hug EVERY time you can. The time limit expires. I wish all of you the best. I can't be of much guidence since the journey was so short. Give a hug, Pray hard, take care of yourself. A Caregiver is of no use if you have already worn yourself out. Take a couple of days off every week and SLEEP!!!!!!. Please!!!!!!!

[bebop]

fred I am so sorry for your loss. my heart just breaks for you!