realq86 wrote:
I think I've surfed to the end of internet
I hope you're able to stay clear. But most of us don't. At some point the mind fogs over and we starty missing large chunks of things. Then there's chemo brain.
But a rare few miss all of that. May you be so blessed.
Hi everyone,
Want to report I finished my 2nd round of consolidation a week ago. The whole round was surprisingly smooth without fever and complications other then hemorrhoids problem in the last 2 days before my counts began to recover. The only alarming was my counts took longer to recover and I was home a week later compare to my induction and 1st round of consolidation. The other good news is the BMB during the start of the round showed my cytogentics have switch from FTL + (7:11) to NORMAL?? This doesn't mean my AML have switched types, it just means they can no longer see the cancer cells in my bone marrow.
With experience from my last break out of the hospital, I made sure I "went" somewhere to wash the cancer at least from my mind. The exchange rate of the weak dollar and the Japanese yen made the Tokyo trip a bit conversative but I couldn't remember the last time my family and I gone on a family vacation together! It was also really great to have my gf and her son (from last marriage) come along and we all really felt like a family. Needless to say the silver lining of this whole AML is I've found the woman of my life!
I'm not back to what I hope is the final time for my planned transplant on Nov 18th. I was tag teamed by a volly of test and needles yesterday and today including a BMB which get the result tomorrow. Had the pre-transplant consultation today and yes you guys are right, it was scary. I think I got a really nice session since we just went through the complications of transplant and the doc is very confident he can deal with them all if I follow all the directions. However what was said between the line was, my case of AML is so dangerous we weren't there to discuss to transplant or not, I have no choice. I told my doc I'm not afraid of the transplant and the complications, all I wanted to know is my chances of relapse post-transplant and what kind of life I'll have. The doc belived there might be 30-40% of chance of relapse post-transplant which is a lot higher then I'd thought which is the 1st thing thats making me a bit blue now. The repeated reminder to take care of myself and slow down also makes me feel I've to give up a lot of my dreams and aspirations in life; as if I'm somehow less competitive which is the 2nd thing thats making me blue. I really want to make a comeback like Lance Armstrong, mentally and physically!
Anyway let me digest all this and make my way to the trasnplant forum. I will continue to monitor this forum and provide support where I can!
Hey Michael. I'm so sorry you have to go through this, but it sounds as if you're head is in the right place. You are focusing on the "big picture" which is your relationships, and living each day to the fullest. You should also remember that you have youth on your side!! I think you are going to come through the transplant with flying colors.
Definitely keep us all posted on the transplant board, and good luck!
Hey michael, it is good to hear from you, i was wondering about you. I am glad the round went well and you got away with your family.
That transplant consult is brutal. My son was 20, in relatively good health, yet when they mentioned statistics for a year, my heart dropped. And the bottom line was....there was no other choice.
But sounds like you are determined, have a wonderful support system and a beautiful gf that is going to help keep you on track. You take care and we'll see you on the transplant forum.
By the way, don't give up those dreams or aspirations, they will help you to get through this. Two years post transplant my son called me from the beach, he was surfing. He does not know how to surf. Yikes.
I was told the stats indicate that 30-40% die after the transplant...not relapse. Some people relapse and make it through just fine. Others die for related reasons but not relapse.
Of course, each variant of the disease has its own stats. But they don't matter. There is no random number generator inside of you ticking out chances. You are your own individual case study and you have a lot of things in your favor. At this point you have a 100% chance of survival. That's the way I had to look at it because it's really you live or you die. That perspective saw me through.
Don't even think about giving up on dreams. Some of us wind up with a lot of fatigue post-transplant. Some of us recover quite quickly and pretty much fully. There's no reason to try to predict your long-term reaponse will be. Heck, I've come up with some new things I want to do since transplant. There are things I've done I never thought I'd do, like kayaking. And I'm one of those folks with lingering fatigue.
You're going to do fine. But do keep us posted.
Blessings
Michael - Just saying Hi on your thread so I get the updates.
Jamie
Michael,
I just saw your post. My wife's condition is very similar yours although she is slightly older (44). She had CMML that rapidly progressed to AML M4 with abnormal cytogenics. Her first induction and three consolidations got her into remission. She relapsed at about 8 months as we were lining up a Reduced Intensity STC. Her next induction failed but the second got her back into remission and we rushed to transplant. She had a myleoablative STC with ful radiation and chemo. The donor was unrelated but a 10/10 genetic match.
She had her transplant on 13 Oct and came home three weeks later. I've said this in other posts, the STC itself is anti-climactic (not to make light of it). You get a bag of blood product and it takes 10 minutes. She's tracking along well so far, just dealing with side effects from the treatment and meds (she came home with a bag of meds that would make Amy Winehouse blush). The docs are watching closely for GVHD issues but it's still early.
Anyway, your mid set is excellent and very positive. Stats always look bad but plenty of people survive this. It's okay to slow down a little as well. Take care of yourself until you recover and get back to the adventurous life. We're an Army family and love to get out as well and know how hard it is to be confined to a room.
Cheers,
Craig
Hi Michael!
I’m 35 years old Finnish woman. I was diagnosed with AML M2 on October 2008. I had one induction and three consolidation treatments and have been in remission almost a year now.
I just wanted to say, that you sound like very brave young woman to me and I’m wishing you the best of luck.
Petra
Message was edited by: Petrapee
Hi Michael! I love your attitude! Stay strong and stay determined! You can do this!! hugs, nicole
Sometimes we just gotta believe>Mike you have alot in you're favor.Alot of people that get diagnosed AML are older.I had a long talk with one of the Doctor's at my bf's hospital.He told me that everyday Todd is alive he has a chance.Alot of factor's come into play with transplant from what I'm reading.Age,performance status.co-morbidity's.It seems to me that you're young,in pretty good health except for the AML, and you have no other health problems so those are all good things in you're favor.Good Luck.And stay positive.
Hi Michael,
Sounds like you're doing great so far - I'm hoping the next BMB shows good results. I also want to encourage you to hold onto those dreams - they really will keep you going. It sounds like you're being realistic that you will have to slow it down for awhile, but perhaps you'll be the one who amazes those doctors! All the more reason to take great care of yourself throughout this process.
My counts recovered slower with each round of consolidation so I suspect that's not anything to worry about. I figured, if the doctor's not worried, I won't worry either (at least, I tried not to worry...!) Seemed like when the doctor was worried, I knew about it right away!
Here's wishing you the best of luck with the upcoming transplant - I think you have a great attitude going on.
- WBF
Hey Michael. Just wondering if you are still scheduled for transplant on 11/18. Good luck if that is the case, and keep us posted.
Hi,
Sorrry for not replying with updates.... the chemo these days has just
been too strong. Yes I am at day 0 now.
- michael
Hang in there Michael.
Wishing you the best on your transplant. I hope it is boring and uneventful but does the job.
Day 0?! Your getting your transplant today? Congratulations! I hope this is the Day 0 of the rest of your life. ![]()
I don't remember seeing you on the transplant forum. Of course, my memory sux. That will be a good place to post over the next several weeks and months.
Truly hope this is a smooth ride on the rollercoaster. Keep us informed when you feel up to it. Or have a frined/family member update for you.
Blessings