Forum Replies Created
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SandyB
MemberJack,
This is the greatest of news for this Thanksgiving Holiday. You and I have been friends through a lot of your trials and trivilations with the CMML.
You are a strong and sensitive man who deserves all of our respect and admiration.
Congratulations again.
Sandy B.
MemberIt is with deep regret that we hear of your Mom’s passing. Her spirit lives now in the Realm of Angels and I am sure her courage and suffering has been rewarded.
May God Bless you and your family.
Regards,
SandyMemberThere is another bright star in the heavens. Neil was one of the “special persons” whom God lent to all of us for too short of a time.
May his family be comforted and find peace in this most difficult time.
MemberPlease know that there are a lot of good people here, who are praying for you and wishing you both peace and comfort.
I have already gone down this road, and tell you that the most important thing for you both to do now, is share time, innermost thoughts, and know that you have done everything you can and now it is up to the Lord.
Take each physical symptom that develops and do the best you can to deal with it. Everyone is different in this disease at every stage, so I don’t think anyone is going to be able to advise you on what will come next. Work with your Dr.s to keep comfort as your prime concern.
Focus on sharing memories of all the good times you have had and the gratefullness to God that you were led to each other.
Again, please know that you will be in the thoughts and prayers of all of us.
Regards,
SandyMemberKatie,
May God Bless you and your family and bring the peace and comfort that only he can.
My beloved Mike passed away 2 months ago, and I know he like your Dad, has a special place in heaven because they fought so hard and endured so much.
I try to keep in mind that if we, the ones that are left behind, do our best to be good and giving people, we will be together again one day.
Sandy
MemberMike and I are very sorry for your loss. It sounds as though your father put up a gallant fight. May God give you peace and strength during this time.
Sandy
MemberThanks Shari. I really appreciate your input.
Sandy
MemberTerry,
You are always a help, just by being you.
I truly pray that you and Bob had a wonderful trip. It is so important to do whatever you can to take a break from this stuff.
MemberWhen you all say that the Whites fell for a while, how long do you mean? Mike’s have been down to the 1.5 area for about 8 weeks, and so his Vidaza was suspended.
This followed an ear infection and hospitalization.
The Dr. is waiting for them to come back up to resume. How high were they when Vidaza was resumed for your loved one?
I am very concerned, as Mike has gone into AML, once before.
MemberWhen you all say that the Whites fell for a while, how long do you mean? Mike’s have been down to the 1.5 area for about 8 weeks, and so his Vidaza was suspended.
This followed an ear infection and hospitalization.
The Dr. is waiting for them to come back up to resume. How high were they when Vidaza was resumed for your loved one?
I am very concerned, as Mike has gone into AML, once before.
MemberGood Morning Patti:
It seems that my last post offended you, and for that I apologize. I really was curious why you questioned me as to what my Dr. said and what I see on Mike’s CBC report. As you notice, our discussion has already put doubts in the mind of another member about her husbands CBC report.
(By the way, I do appreciate not being called a liar).
All of us here, have had and will have, different interpretations by our various health care professionals. MDS is one of the hardest dieseases to diagnose and treat, and every single patient has one or more unique circumstances affecting their treatment and response. Doctors are still in the learning process, as the rest of us are.
I know that you were very involved with your Mother-In-Laws treatment, which is admirable. My husband, of 40 Years today, has been going through this for almost two years, MDS to AML to MDS, and I as well have been very active in his treatment. I think everyone here has been just as involved as we have in making sure that their loved ones are getting the best.
The forum is a wonderful place to share information, but I think there is also some risk involved in some of the postings. We have all gone through the horror of initial diagnosis, the confusion about the disease, and the uncertainty of what to expect or do. If someone through their postings, advises others on what to do, I think it is extremely dangerous, especially for the new members. They obviously need direction, but that should remain the sole job of their own Dr.s, as we do not possess the education or experience that they do. We simply do not know what uniquesness there are, in their particular health situation.
I hope you do not decide to leave the forum. When I first became a member, you decided to leave and post elsewhere, but eventually came back.
Have a good day.
Sandy
MemberPatti:
I notice that you always seem to have answers or advice, on just about anything. Where do you find information like what the majority of CBC forms show? I’d be interested in knowing what your sources are on so many of these subjects, as I also have a curious mind.
Sandy
MemberTerry,
Mike has a port, Dr. thought Picc Line was more apt to beocme infected more often.
Yesterday, Mike has his port flushed, and his platelets at the time were 13. No bleeding at all.
Also the Dr. did give Mike a platelet transfusion a few weeks ago so he could get surgery on his ear. He said it is not that unusual to “Pack up the platelets” when minor surgery is necessary.
Have a good trip.
Sandy
MemberPatti:
Thank you for the advice, but I am going to go with what my Dr. says and what is printed in black and white on the test results.
I think maybe the fine line is getting broken more and more.
Sandy
MemberEvery one of Mike’s CBC’s has a category listed as MID Cells. Those are a combination of Monocytes, Esophils, Basophils, Blasts and so forth. These are just normal CBC’s without Differentials.
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