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Donna
MemberHi Barbra, reading your post I can put myself in your shoes, if you know what I mean. Darned if you do, darned if you don’t. It’s a tough situation, to say the least. With mom, she was sure she didn’t want any treatment, the dr told her nothing would cure her and that side effects could in fact make what time she had left far more worse. She chose to enjoy each day as best she could. It really is such a personal decision, some of us would try anything and others nothing. I too wish I had one of those magic wands — No one knows what tomorrow will bring – live for today. Your hearts (and your gut) will tell you what to do — you’ll know.
All the best to you and Ron.
Donna
MemberHi Wendy, That’s why it’s so important to get to a specialist. I don’t know for sure if a specialist would’ve offered mom more — that’s something we’ll never know.
I really wanted her to see a specialist but she really didn’t want to, she was very comfortable with her Dr. We had to respect that and support her decisions. Mom’s MDS was very aggresive, everything happened very fast. Please don’t think this is going to happen to your dad, everyone is very different.Donna
Memberyes – mom received regular transfusions, that was all that her hemotologist offered her in the way of treatment.
Donna
MemberHi Wendy. You’ve come to the right place. If you go to the home page of this site there will be a link there — scroll through and see which centre is closest to you.
It’s a good idea to speak to your dad’s dr and get a referral to a mds specialist, someone who deals specifically with mds. Also, you really should know what classification/type of mds your dad is dealing with.
They are all different — some forms more aggresive than others, and each require their own specific form of treatment. My mom did not see a mds specialist she chose to seek treatment from a hemotologist, her decision. That being said — it is up to your dad, if he wishes to see a specialist or not. You have to respect what he wants to do.
It’s very scary at first — lots of unknowns to deal with, with knowledge comes power. Will you dad let you go with him to the dr and ask the questions?Take care,
DonnaMemberHi Barbra, I’m outraged that someone sent you that personal email. How dare they!. Caregivers are very important to this forum, we are a team here!. We can learn a lot from each other.
Never give up Barbra, keep doing what you’re doing.
All the best to you and Ron,Donna
MemberHi Bill, Wanted to let you know that I’m thinking of you as well. Hope you find a match and that everything goes as smoothly as possible. One day at a time, that’s all any of us can do.
Best wishes to you and Mary,
DonnaMemberDear Sad,
I’m sure you will miss him terribly. He is free from his pain now and no longer suffering.
We will all be thinking of you and keeping you in our prayers.Donna
MemberThat’s great news Bill!
Isn’t it a good feeling when you know you’ve found the right place. Sounds like they have a wonderful team there. I’m sure when the time comes they’ll be able to take your fear away and make the transplant as comfortable as they can.
Donna
MemberHi Helen, Re read Suzanne’s posting. Just because he has progressed to AML does not mean this it.
Make sure you’re at a Centre and remain hopeful, remission is always possible. Never give up until you know it’s time to give up.
Stay strong,Donna
MemberI meant June of LAST year.
Donna
MemberHi Greg, My mom started having breathing problems around June of this year. Her breathing was very labored. Her hemoglobin was quite low, they thought maybe a transfusion would do it. She wasn’t quite so lucky, in her case the Lukemia had moved into her lungs, unfortunatley for mom she never really had any relief, nothing seemed to help.
I hope your mom is able to get some relief soon — Mom said it felt like she just couldn’t get a good breath of air.Take care Greg,
DonnaMemberI’m so sorry Sarah. Please don’t try to think too far ahead. One day at a time. Your emotions are going to be up and down. Yes, you’re right — he is free from is pain, the suffering is gone. Your dad is in a much better place now. No pain, no machines — he’s free.
Take care,
DonnaMemberHi John, I’m so sorry for your loss. I just recieved a phone call a little while ago that my ex sister in law had passed away on Saturday, suddenly. She was only 48. My first husbands passed away at the age of 32 and my mom this past summer. So much truth to the saying – “live each day”. I find myself almost getting paranoid now, and worrying about everything. I will be checking out the book you suggested.
Take Care John, again, I’m so sorry.
Donna
MemberYour welcome Leigh, I wonder why they said there is nothing they can do for him?? — Is he going to leave it at that or see someone else for a second opinion. St. Pauls has always had a very good reputation. Now, were the Dr’s he saw MDS specialists?. He also should know his classification that is very important when it comes to treating MDS, the only way they would be able to tell what it is, would be to have a BMB, has he had one?. Keep looking leigh, there’s probably a lot they can do for your dad, don’t give up. You could try emailing the red cross, they were quite helpful. There is a centre of excellence in Seattle, I don’t know if that would be an option for you, with insurance and all, but I would talk to your dad see if interested in exploring other avenues.
MemberHi Leigh, I too am from BC. Whereabouts in BC are you? Sorry, slightly off topic here, but just wondering who your dad is seeing?. My mom saw a Dr. Wendy Lam, she was not a MDS specialist, she is a hemotologist who works out of Burnaby General. I was trying to get mom to go to a specialist but she was quite content with her. I wondered about Vidaza as well. I would be curious to know if it is. I hope your dad has found a MDS specialist I really think it makes the world of difference, they would on top of things like this.
What classification is your dad?
Good luck Leigh,
Donna -
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