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SandyB
MemberGood Morning Sandy,
I hope this finds Mike and you doing well. Thanks for the confidence, but I am only knowledgable due to our experience.
Mary’s Magic was the medication given to Mike for Mucousitis. (inflammation of the mucous membranes, both in the mouth and intestine)
He fortunately only had it occur in his throat. Your hospital may use something different.Mike has not really had a choice on the transplant since his siblings did not HLA Match and there are no donors at the Bone Marrow Transplant Bank that match either.
Right now, they had to stop the Maintenance Chemo because his counts dropped too low. They have been trying to come back up for the last month. The Dr. now thinks maybe Dysplasia is at fault.
It seems like a never-ending battle, but like everyone else here, battle we will.
MemberGood Evening Sandy,
My name is Sandy as well, and my husband is also Mike. My Mike went through Induction Chemo for AML back in May of this year.
Even though everyone handles the chemo differently, I though I would give you encouragement and a few experiences that Mike had.
First of all, Mike did absolutely fantastic through the whole Ara-C + Daunarubicin chemo. He absolutely amazed the Dr.s and nurses with his positive attitude and I think that was the key.
He was given medicine for nausea and fortunately he did not have to deal with it. Consistently we would not look any more ahead and stayed at the “one day at a time” pace.
He was in the hospital for 23 days, and I stayed with him.
We kept as active physically as much as possible. Mike had an exercise bike in the room and literally rode it every day at an easy pace, just to keep active. We walked the halls in the “Isolation Area.”
He had a problem with a sore throat and was given “Mary’s Magic” to deal with that.
There were fevers and spikes for about 2 weeks, but medication was given to control those when counts were very low.
I could give you many details, but I really would just like to instill the “One Day at a Time”, keeping active as you can, and maintain a positive attitude.
Pleas know that we wish you both the very best and will be there with any help you need, in navigating this treatment.
MemberGood Afternoon Ed:
I am confused about waiting to get to Dr. Cripe at Indiana University. He is excellent and we drive for 5 hours each way to see him.
It to me would seem to be advantageous to see him as soon as you can.
MemberJeff’s fight was inspirational. Praying for strength and courage for his family.
MemberI believe the MDS Foundation has a support group in Philadelphia, and are possibly looking at other locations. That what I was told in the spring, by a person at the MDS Foundation Office.
MemberWelcome Alice and Mom,
You will find the persons involved on this forum to be helpful and compassionate.
Most of us rely on each other for information sharing and moral boosting and are available day and night.
Your situations are much like the rest of ours, and we look forward to talking with you.
MemberKristy,
Please accept our deepest sympathies. At times like these, words are not enough.
Remember the special times you shared with your Mom, and know that standing beside her as you did, was her greatest joy.
Strength and Peace to you and your family.
Regards,
Mike and SandyMemberMy husband’s Mikes Dr. did at one time suggest that he have a Mini Transplant.
Mike does not have a sibling HLA Match and no match in the donor bank so far. We were told the next step was “Cord” Stem Cells and it would take 2 Cords to do the transplant.
Those are legally donated and stored by mothers just giving birth. There are so many diseases that could be helped or cured with Stem Cells.
It seems the moral delimma arises when the fear of the unscrupulous perhaps turning a helping hand into a black market bonanza.
I am sure there is a solution, we just have to have the opportunity to find it.
MemberJack:
You are absolutely right. I think we all do. It just that this issue is so important to all of us right now.
Sandy
MemberThese are great! Thanks for supplying something to enjoy.
SandyB
MemberYeaaaah Jack! Glad to hear the great news. I am so glad things are going well.
Please keep up the good work and keep us posted.
SandyB
MemberFran,
You are never alone in your fights. We are all there for you with prayers and well wishes.
Amen to what Caroline wrote. Unfortunately, young people today are having difficulty in identifying priorities in life. With economic pressures, it seems that jobs and things have taken way too high of a position in importance.
Have you tried seeking out local support groups or talked to your minister about your situations? Sometimes help is closer than you think.
Have a good day, and try to remember “One Day at a Time.”
MemberDear Ellie:
Mike and I were very saddened to hear of Glen’s passing. Please know that we will continue to pray for you and your family.
Regards,
SandyBMemberGloria:
I am so sorry. Please accept mine and Mike’s deepest sympathies.
You and your husband fought such a gallant battle and you were an inspiration to us.
May God Bless you all.
Sandy
MemberGood Evening Leeman:
The other information and opinions you have received from the other forum members is very good and I am sure that it has helped you.
My advice to you falls into a different category. From this day forward, if you and your wife adopt the philosophy of “Just One Day at a Time” you will be wise.
This disease has many hills and valleys, and affects each individual differently. There does not seem to be a template to which all can adhere to.
Pray often, eat as healthy as you can, get extra rest and enjoy all the things you always have with just a little more appreciation.
If you can “Take One Day at a Time” and not look down the road too far with anticipated dread, you will both benefit. Every single day there is something new found about this disease, and it is only a matter of time until all the right answers to the questions will be found.
In the mean time, welcome to a place where we all understand and will be willing to share whatever we can.
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