[niol]

Hi Neil,

Yep and that is 1100 a month for the policy. Looking to see what can be done. Got about three weeks to get things figured out.

Ed

[niol]

No two people are a like. No two people respond the exact way to complicated medical problems. That understanding still remains with the MAN UP STAIRS!

However, daily new treatments either in drugs or complex mixing of treatments gives some people the FIX their body needs.

Revlimed is a golden bullet right now for people with the -5q form of MDS. It does not work on everyone but has afforded nearly all some form of improvement. Just think three years ago this was not available.

Just by looking at the testing going on right now there are a number of drugs being looked at that may work on various forms of MDS. So everyday you live longer the chances of your cure coming along gets closer.

I think a person needs to find a doc they trust, eat a good diet, get exercise that you can tolerate, and most of all keep a positive attitude! Plust if you believe in the man up above praying sure could help out. I know it did for us.

Take care and stay upbeat. A head hung low can end up getting skined on the ground. A head held high will smell the fresh air. Take your pick

Ed

[niol]

In my early internet travels when we frist learned of my wife’s MDS I learned most insurance companies will not pay for a med until the FDA gives it blessings. Hence, while Moffitt article indicates Rev does help out on other then the 5q issue the data must be presented to the FDA and approved by them before most insurance carriers will pay for it. Keep in mind Rev is one of the most costly potential long term usage drugs on the market. So the insurance companies are not going to easily agree to cover it.

I had a 30 dollar copay while the insurance company was charged 6570 dollars for the balance every 28 days. Now that I am laid off I have no idea what we will be doing here in the next four weeks. But hope God provides us some insight.

Keep the faith everyone
Ed

[niol]

I have thought about Mike and each chance I get I link here to the site to see how he is doing? I hope no news is good news.

Our prayers and support for Mike continue.

Ed

[niol]

I read both both of them and found some interesting information. It appears right now my wife is not to the point of the SCT based on research but if her MDS advances at all that she consider it.

If I understand what I read if you wait until it is full blown cancer that the outlook is not as good as getting it done before.

I see MDS as having several roads of treatment to travel. Sadly there are no roadmaps that tells a person which road is the road for them to travel.

Thank you again for the inforamation. Take care and God Bless.

Ed

[niol]

Sandy,

You let Mike know there are 1,000s any maybe more here that are thinking about him and praying for him.
He is not in this battle alone but has a silent army of us all behind him.

I think if they would allow us to build a grand stand right in his room that it would reach many many stories high. Everyone would be on their feet cheering Mike on. The cheering would be such that the walls would shake.

Since they won’t let us do that Mike should know that there are people in every state and many countries around the world who support him. We may be silent and not at his bed side but I think if he closes his eyes he can see us all out here. He is not alone as each of our spirts are with him.

Take care Sandy, stay strong and please remember we all care and are pulling for Mike.

Ed

[niol]

Thank all of you replying. Willie, how long ago did your wife have the SCT? Plus any other details you care to share.

I have looked at the risks and of course the final decission will be 100% my wife’s as she will be putting her life on the line. As for me, if I was walking in the shoes I would soon roll the dice with a SCT then play games with something that will follow me and darn well overtake me. But that is just me.

Here is the kicker though. It seems like every few months a new approach with meds is coming around so do you roll the dice on the SCT or hope a new drug comes along that can CURE the MDS.

Dr. Cripe told us during our first visit that if Rev did not work then it was a SCT. That he WOULD NOT use any of her family’s SC. I should have asked him but did not as to why. My belief is since they do not know what the real trigger to MDS that at some time in the future gene could trigger it again if the SC matched up too close.

While I have only posted a couple of times I want all of you know I read nearly every post here. It saddens me greatly to read how people enjoying their golden years are hit with MDS. Or fighting some other illness and doing pretty good only to have MDS add to their health issues. I wish I had the money or brainpower to figure out a cure to this but sadly I don’t.

God bless all of you and for those of you that offer your insight, support, and friendship I admire you so deeply. If you ever wonder what God had in mind for you is to do the very thing you are doing here. Giving many of us hope, support, and understanding. That is one thing all the money in the world could not buy.

Take care and we will keep in touch.

Ed

[niol]

Well, in my confused state I may have miss stated the fact that I the Dr. she seeing here in Fort Wayne seems to be laying back. When we first set up to see Dr. Cripe they had her in to see him within five days of us contacting them.

Tonight I get home from work and my wife says the Doctor’s nurse called and said to start her Rev again. I told her to hang on. That the Doctor said two weeks ago when she started it would be 5mg over the 10mg she had been taking. All she has is about 8 days of 10mg tablets. So we will wait until morning to call.

Sadly I think the problem is while this group of Doctors has seen maybe a couple hundred MDS people with MDS they have only seen one other person like my wife. Nearly all of their other pat. have cancer or other major issues. He told us early on my wife was only the second person they have seen at in their mid 50s with no other health issues. Sadly, the other lady they had seen passed away about two years ago and never got a chance to be put on Rev.

I am not scared about the medical world as I have seen way too much of it with seven back operations, having my neck rebuilt, serveal rounds of having kidney stones removed by operation, and colon section because of a birth defect that took them (including Mayo Clinic) seven years to find. The only point I have been around and know sadly first hand how things can get screwed up even though people are trying their best. The medical world has us humans in it and hence is not perfect.

I guess my point is if there is only “one” or “two” cures why don’t they take people like my wife and start down that road. I know the there are major risks that have to be discussed and understood but would it not be far better then putting MDS on a holding pattern or even remission knowing pretty well that the MDS will return.

I guess being from an engineering field I just believe in fixing things so they last and not patching them up so they work for a while. Then when they break again we will patch them up again.

That is not what my wife wants as she is getting depressed over the idea that they may screw around with treatments until it reaches a point that she would no longer be able to tolerate a SCT.

With thoughts and prayers to all of you who fight MDS or support someone that has MDS.

Ed

[niol]

I had read the same info and feel much like you that in four weeks the med is out of your system. The Doctor at the IU Med Center that is in charge of their MDS program told us if Rev. does not work for her that she wouuld be BMT person. With her age of 55 and no other health issues that her best chances for long term and cure would be a BMT.
I just hope we are near the bottom and with fusions that we can get her level up to a point we can try either some other med or move on to the BMT.
Thank both of you for your comments. Oh, how do you put the tag at the bottom of your postings?
Ed

[Author]

Posts