Welcome, Kim. What an inspiring and encouraging story. Congratulations on the big 5 year birthday. I understand that may be the biggest of all milestones in one's AML journey. I am also an AML FLT3-ITD transplant patient and although doing well at 15 months post transplant, I have been very discouraged by two of our most beloved members, both FLT3ers whom we recently lost. And not too long ago a young man in his twenties, also FLT3 positive. We do have a few of us doing well, Majella from Ireland (planxty) probably our longest FLT3 survivor, but none as long as you. I'm glad to see that FLT3 is survivable.

Lou

Kim,

May God abundantly bless you for sharing your inspirational story with us. For me personally, your post has given me so much hope. Recently, we have collectively shared the loss of several of our FLT-3 warriors.

Thank you so much for joining and sharing!

Blessings,

Julie

Thank you for your kind words and for welcoming to me to your group, Lou & Julie. I'm so sorry for your losses.

Kim,

Your words have really helped fill the void that many of us are still experiencing weeks after we lost two dear friends to this disease. I was not FLT-3, but had a transplant 2.5 years ago and am well. What you have done, which I cannot, is tell our FLT-3 survivors that there is life after FLT-3 and that there is every reason to be upbeat and positive about the future. It sounds like you have a wonderful and supportive family and I am so happy that you are able to enjoy each one of them.

Here's to continued good health and inspiration for others.

Thank you so much for contributing your story and thank God for your donor. I thank God every day for mine!

Cliff

Kim -- thank you so much for coming aboard and bringing your good news. I am right behind you with 4 years and three month of survival (chemo only). They do not really know what puts us into remission -- it works for some and not for others. My theory is that the chemo actually kill the stem cell(s) that are producing the mutant blood cells (blasts) that are incapable of maturing and refuse to die. It is possible that the chemo in some was disables these stem cells from reproducing, but as a practical matter it would not really matter since the net effect would be the same. I have floated this on a number of lists and asked for criticism and it seems the response I get is that this theory is as good as any. We do know that the longer you do not have a problem the greater the chances that you will not. This is seen in the exponential survival curves that almost get perfectly level after three years. In fact, since AML involves so many older people, these survival curves are not that much different from people who have never had AML. So effectively, I would consider anyone who has survived over three years to be virtually cured. If it does come back it would not be a relapse -- it would probably be either a new incidence or else perhaps a long term effect of the original chemo, both of which are highly unlikely, but possible.

Again, thanks for bringing your story and PLEASE stay with us and help out others who are going through what we went through -- we need survivors to stay aboard and help. -- dave

Cliffs & Dave, thank you so much for warmly welcoming me to this group. I am honored to be counted among you! :) Cliff, words aren't enough to describe how I feel about my donor. I don't know much about him. I do know that he was 20 at the time, and had spent time abroad--sometimes I wonder if he's even a U.S. Citizen. I tried to write to him several times, but heard nothing. About a month ago, I contacted one of my former transplant coordinators, and found out that a former employee did not forward some of the patients' correspondence. When she told me, my heart dropped. She couldn't tell me how long this had been going on, or if my letters were among those. She suggested that, at this point, I authorize the release of my information--in lieu of writing another letter. I don't know why. I have heard that some donors actually wish to remain anonymous. :( Dave, I am pondering everything you told me. Your perspective is refreshing, and makes a lot of sense. Thank you so much! My doctors always used the term "remission" with me, instead of "cured"...which is a common way of looking at it in the medical community, I guess. Maybe I'm a dreamer, but I want to be more than "in remission". For a long time this bothered me, but I finally let it go. I am doing the same regardless of the word that the medical community chooses to use to describe it. I'm glad that you are also doing so well! Isn't it great to prove the statistics wrong? Initially, when I was diagnosed, I put a lot of credence in the statistics. I used to linger on the internet, grasping for straws--big mistake. Then I got angry...and determined. Don't let any prognosis or circumstance (however heartbreaking) crush your resolve. The Lord is with you on this journey. He doesn't always remove you from your own personal "valley of the shadow of death", but He gives you the strength to walk through, regardless of the outcome. God bless.

Hi Kim ,

Welcome welcome what an inspiring story. It's great to have another FLT 3 on board. The death of our friends on this site has been very tough on us so you are just the lift we need. I live in Ireland and we only have one centre and I currently attend the transplant clinic where all people I meet are still battling one way or another but my next hospital visit is to the late effects clinic so I hope to meet other FLT 3 survivors and uplifting tales.

I too have 4 children which keeps me on my toes and my head above water. I am just recovering from pneumonia and plagued with chronic gvhd the skin thickening type very ugly and severe on the joints but I live to fight another day.

I also read way to much in the beginning and it scared be half to death. I then gave it over to God and he took over there is no point in fretting I cannot change what I have or what may happen. God has carried me this far and has given me an extra 2 years with my children and he can give me many more.

From your picture you look sensational sooooo young, sooooo healthy and full of life. Continued good health to you

I'm so pleased to welcome you .

Planxty aka Majella from Ireland

Kim -- thanks for coming back. I never stopped working during my chemo (in the hospital for 8 months) and never had time to surf the web -- I just let the Lord do my worrying for me when things got rough. I never figured on surviving, so when it happened it was a great surprise, and I figure I am living on borrowed time now, and at 70 who knows when I might have a heart attack or something. So worrying about a relapse has really never bothered me. I expect that if my blood numbers started acting up I would not be that brave, but no reason to worry about that now.

Yes, they call it remission meaning -- its still there but it just is not causing a problem right now. I do not use the word cure because we never know. But if the mutant stem cells are dead then that would be a de facto cure. Thing is, we just never know. But then, what DO we know? I mean about our physical lives in general. There is a sense in which we are all ticking time bombs -- our clocks are just set at different and I believe quite random times. As it says in Ecclesiastes -- time and chance happens to all people. We are far luckier than others, and we have been through and many of us are still facing some things that are just not too fortunate at all. It is all in the hands of a loving and just God, and that should be good enough for all people of faith. -- dave

Hi Majella! I'm so happy to meet you. :) I'm surprised there's only one transplant center in all of Ireland. How old are your kids? I have a 19 year old daughter, and three sons--ages 16, 14, and 7. My youngest, Sammy, is the little guy in the picture. He is one of my reasons for fighting so hard. :) Even if I were to get the AML back, at least he will know me, and how much I love him. My illness was very hard on him. The time away from home took its toll. When I was finally discharged, and he saw me for the first time, my appearence frightened him--I'll never forget the look that was on his face. AML robs you of so much, and not all of it is health-related. I also have joint issues, and often wonder what it's from. Did your doctor confirm that your joint issues were a manifestation of the GVHD? Do you also have neuropathy issues? I agree with you that there is no use fretting about it, especially since stress can make you sick. I hope that everything goes well for you at the late-effects clinic, and that you are able to cross paths with other FLT3 survivors. There truly is strength in numbers! Thank you so much for all your kind words. It is a pleasure to be here! God bless. :)

Dave, you are amazing! I can't imagine holding down a job while simultaneously being treated...and for so long. You are right to say that, in a sense, we are all ticking time bombs--healthy or not. Even though Jesus raised Lazarus from the dead, Lazarus died eventually. Nobody's "tomorrow" is guaranteed to them. The verse in Ecclesiastes is one that I actually drew strength from when I was first diagnosed. For a time, I had entertained the notion that perhaps God allowed me to go through this disease because I had done something wrong. in spite of that, I desperately prayed for healing so that I wouldn't have to go through transplant/chemo that I was so terrified of. When that didn't happen, I thought my prayers had fallen to the ground. Needless to say, when you're backed into a corner with a disease such as this, it forces you to do a lot of soul-searching. In time, I came to realize that just because the Lord doesn't respond to our prayers in the way that we'd like Him to, doesn't mean He doesn't hear them...or that He's not there. Just because we get sick does not mean we have been abandoned. Time and circumstance happen to all. There is so much more to our lives than our lives presently. The Bible says the Lord is close to the brokenhearted and those crushed in spirit. It also says that God will not leave us or forsake us. Clinging to these promises has given me a peace that truly transcends understanding. Especially during my "off" days, or on days where something pops up that makes me wonder if the AML is coming back. Dave, thank you for your words. Your faith is inspiring.

Kim,

I have a daughter of 26 and 3 sons 22, 9, and 7. When I was diagnosed I was put in isolation for 35 days the boys were 5 and 7 at that time and did not see me they got a terrible fright when I came home. My youngest has no recollection of a healthy mom he only remembers sickness, I hate that aml has taken all his previous memories from him.

My joint issues started 9 months ago and I had been treated for arthritis up to December until I saw a rheumatologist. MRI scans ruled out arthritis and as my skin had started to thicken consultants agreed that it was gvhd impacting the joints. I'm on cellcept and also an inhibitor called gleevac which is normally used to treat CML but I'm taking both of these to try to combat the gvhd. Side effects from the gleevac is the most terrible cramps imaginable. I'm still working through various pain relief meds but we haven't found one that works yet,

How coincidently similar our paths are.

Majella

Kim:

You are so right about your disease not being punishment from God. Not to say that He never did that type of thing, but we do not see it in the New Testament. Our punishment will be in the hereafter if there is punishment to be had.

In fact, the reason could be just the opposite. I know you are probably familiar with 2 Corinthians 12. Paul's "thorn in the flesh" was not trivial, to the point where he prayed for relief from it three times. We do not know what it is, so it could as likely be a symptom of MDS as anything else. I say it was significant because I do not pray for relief from trivial things and I do not expect that Paul did either. He was REALLY bothered by it, I would expect to the point where he reasoned that it was hurting his work for the Lord and thus, relief was a reasonable thing to pray for.

It is the reason that Paul was allowed to be plagued by this and the reason that the Lord said NO to Paul's request for relief that is of interest. Was it because Paul was evil? Surely we know better. But Paul's special revelation ("caught up to the third heaven") was unique among men, and it was something for which he could easily become proud. It states that the reason the Lord said NO is that Paul needed this malady to keep him from becoming proud of this special gift that God had given to him.

We all need to realize our gifts, but also our mortality and our weaknesses. Apparently Paul did not realize this weakness -- the Lord had to tell him about it and the reason he was being plagued in this way. We have to hand it to Paul -- by rough calculations this event happened some 15-20 years before, and he had never breathed a word about it to anyone prior to this time (at least we do not know about it if he did). Think about that -- suppose you or I were caught up to the third heaven and saw things that were unspeakably impossible to explain -- would we be able to put a lid on it for 15-20 years?

We have the false teachers at Corinth to thank for the fact that they provoked Paul to reveal this and so now we have the answer that Job could never get as to the reasons that bad things happen to good people. (God always turns evil to good use.) We suffer not because God cannot "come to the rescue." It is so that we can develop the attitude that Paul expressed:

2 Cor 12:8-10
8 Concerning this thing I besought the Lord thrice, that it might depart from me.
9 And he hath said unto me, My grace is sufficient for thee: for (my) power is made perfect in weakness. Most gladly therefore will I rather glory in my weaknesses, that the power of Christ may rest upon me.
10 Wherefore I take pleasure in weaknesses, in injuries, in necessities, in persecutions, in distresses, for Christ's sake: for when I am weak, then am I strong.

There are a lot of strong people on this forum -- I thank God for every one of them.

Take care -- dave

Welcome Kim... it's great to hear you are doing so well. Its great to hear positive stories on here. I was not flt-3 but received my transplant about 14 months ago and been doing good so far. Its all about attitude and faith in God...

Wow what an amazing journey you have gone though. My husband was diagnosed last summer and we still feel like such a newbies. All of these positive stories keep us inspired.

Wishing you continued blessings.
Colleen and Harry

Majella, I'm so sorry to hear about your stomach cramps with the Gleevac. Can your doctor give you anything to combat it? When it comes to your youngest, try not to dwell in his early memories being tainted by your disease. It is what it is. Even though my son was only one when I was diagnosed, every once in a while he brings up an aspect of that time period that I'm stunned he remembers. Kids memories can go back further than we realize...especially when those memories are so emotionally charged. For a time, I used to mourn a lot of the "firsts" that I missed out on with Sammy...either because I was at the hospital, or because I wasn't fully "in the moment" because of the sickness. Dwelling in the things that we can't change about the past does nothing for us...but CAN rob us of the present.

Dave--you are truly blessed with the insight you have. The Lord's strength truly is made perfect in weakness. It is those times that we are weak--and "empty" in a sense--that we can truly appreciate the Lord's sustaining power in our lives. Everything about us is fallible...strength and provision that come from God is perfect. Human strength (apart from God) is like a feather in the wing, dictated by the winds of circumstance. A person who recognizes the fact that God can (and often does) use seemingly devastating circumstances for good is truly blessed. I find great peace in that truth. A clay vessel must first be fired in the kiln before it can be fully usable, and carry water. I enjoyed reading your analysis about Paul. You pointed out many things that I had never considered until now--thank you for taking the time to do so.

Dppmeeks, I am glad you are doing so well. It truly IS about faith in God, and a positive attitude. A merry heart is like good medicine!

Coleen & Harry, it is a pleasure to meet you both. I will pray for the Lord's direction in your journey & treatment options.

I am amazed to be part of such an amazing group of people. God bless all of you! :)

~~~Kim

Kim, I'm so happy to see you joining our group! Your story is so inspiring, and I thank you for sharing it with us.

Hugs,
Monique