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Adult ALL

mmike2484
Posts: 2
Joined: Apr 2009

Ok, so here is my story. On August 28, 2008 I was diagnosed with ALL. Currently I am a 24 year old male, about to turn 25 this month yey. Since August I have undergone 6 rounds of chemo. The first 2 rounds were under the hyper-CVAD regiment; unfortunately I didn’t go into remission. The first round took me blast counts from 95% to 70%. The second round of chemo took me from 70% to 40%. At this point I had had a consultation with a doctor at Fred Hutchinson in Seattle. The Dr. recommended that I go into the Linker regiment. So my oncologist started me on the Linker regiment. After one round on the Linker regiment my leukemic blast went down to 25%. A month later I had another round of chemo; this took me down to 10%. Since this regiment didn’t get me into remission, the doctors decided to put me on another regiment. This time it was a pediatric regiment. The pediatric regiment didn’t do a thing for my cancer blast, I remained at 10%. The doctors again put me on a different regiment, pediatric regiment. This was my last round of chemo from which I am currently trying to recover from. The doctor did a bone marrow biopsy this past Monday. We are waiting to see the results. I am really nervous because the doctor told me that if I don’t go into remission with this last round of chemo that all we are going to be able to do is maintain the cancer. Has anyone had this much trouble going into remission with Adult ALL? Or does anyone have any advice?

DDP
Posts: 10
Joined: Mar 2009

I don't know much about your regiments, but I can tell you that I will pray for you and would also like more post to keep up to date with your prognosis. My wife has ALL as well, and we had great luck with the first round of chemo, it put her into remission. We are currently receiving her 2nd regiment at OHSU in Portland. She has to receive chemo treatments until her bone marrow transplant. As of you not going into remission, your age is a huge factor into remission, I am sure that the next round put you into remission already, with technology and great doctors, and don't forget God, you will not only recover but grow from this. Keep updating, The Pecks

mmike2484
Posts: 2
Joined: Apr 2009

First of all, thank you for the prayers. I did find out on April 3, 2009 that I went into remission, .9% cancer cells. Below 5% is normal. Yea, this made me so happy. Right now I’m in Seattle, 1700 miles away from home, getting tested for the bone marrow transplant. Luckily my sister was a match and as long as I don’t get an infection I should be good to go. The staff at scca is really professional and experienced. I couldn’t have found a better place for my transplant. I also just turned 25 on the 24th of this month. Going into remission has been the best present in my life. DDP, hope that your wife is doing good now. If you need any help or have any questions that I might be able to answer, don’t hesitate to ask me. As for me, I’m doing great. Just waiting to go through my transplant, which I hear is going to be tough. But luckily I have a beautiful gf here to help me through this. I just need to tough it out and get through the first few 100 days after the transplant.

DDP
Posts: 10
Joined: Mar 2009

We would love for you to keep in contact when you start your transplant, we are waiting for a donor. That is wonderful that you were able to have a sibling that matched. We are home now, and wont have to go back to Portland for a couple of weeks. Would like to know what to expect when the process starts, and by the way, HAPPY BIRTHDAY! What a wonderful miracle to have on or so close to your b-day to become in remission. We do get pretty busy with appts and other things that it is hard sometimes to check this sight, so feel free to send me a email anytime on our personal address. andydawnthurston@msn.com. God Bless

SecondLife
Posts: 2
Joined: Jun 2009

I am pleased to hear that your disease was arrested so that you can proceed onto a transplant. Many people have successfully gone through the transplant process, so the one thing we know for a certainty is that it can be endured. My situation is somewhat similar. This is my second go-round with leukemia after a 12 year remission. The initial chemo regimen I recently finished reduced the disease to 1%. My doctors are now contemplating next steps. This could entail supplemental infusions to kill the 1% or a move to a transplant. Happily, I am a much better patient this time. Chemo is not so fearful and I know what it is like to come out on the other side. I was a better man for having endured the first grapple with the disease, I will be a better man still after my second.

tf168wife
Posts: 21
Joined: Mar 2009

that is great news about your remission! And Happy Birthday! I will be praying for you, and yes, please keep us posted!

momofone22
Posts: 3
Joined: Jan 2010

Hello All,
My son is 22 years old and started on the Linker protocol, but two weeks later was switched to the Hyper CVAD (actually CEAD) protocol. He has been in hosp for 1 month and is almost in remission. He is suppose to get the Omaya reservoir and cranial radiation. I hope that if anyone out there is in similar situation please contact me at mendoza1922@yahoo.com. He is having problems with nosebleeds and facial pain. I hope and pray things go smoothly, but I have no idea what to expect.

jmedina
Posts: 1
Joined: Jul 2009

My husband was in your situation after his 2nd relapse. His oncologist advised against a stem cell transplant because he said there was little chance for survival. Little does not mean zero, so we decided to do the transplant anyway. After the transplant, he was in remission for 4 months before relapsing again. We went to the university of chicago teaching hospital where his new doctor gave him the pediatric regimen and high dose ara-c. he has been in remission now for 2 years.
Do not give up. Go get a second opinion. There is always hope as long as you are willing to fight.

sunrise4vic
Posts: 4
Joined: Aug 2009

MM2484, my prayers are with you but I want you to be encouraged. When I diagnosed with Acute Lyphoblastic Leukemia I was 19 years old in the prime of college in May 1985. Back then I was a part of a 2% population of people worldwide that would have the option of a BMT (Bone Marrow Transplant). My brother who was 1 year younger & was my perfect donor so when I went into remission with chemo in June 1985 I was preped to have the BMT at Memorial Sloan Kettering Hospital in NY on November 20, 1985. It was a success and I spent only 11 months in and out of the hospital due to my immune system needing to be build itself up and that meant a lot of isolation & few friends in small quantities to visit but I had a lot of family, friends, doctors and extended people that also helped along the way. When I finaly got out of the hospital, they did not have the internet to network with other people that was survivors and the only post-treatment groups they had were basic seminars for people like myself that need more support after treatment to deal with normal reactions after surviving ALL and a BMT. Some of these symptoms were basic fatiques, learning to walk before you run, questions or dating, living on your own or fears of the coming out of remission. You were a pioneer back them but you did what you could by working with others to tell your story to encourage them and to also help you through your own recovering. It's been 19 years as a survivor and I have had the opportunity to work like the average person to earn a living, live on my own and finish school part-time while I worked. Because of the amount of total radition I was exposed to I only have a 2% chance to have children so it was giving up a future life to save mine own. Treatments back then were more aggressive and because of that you have other chronic condition like enhanced allergies. However, it did not stop me from having a life. I was a very positive person and kept perservering on with a lot of Faith. Some things go way beyond doctors after you make a treatment choice and it's important to find peace regardless of the challenge. I can say that because of cases like mine, hemotology/oncology doctors have learned how to practice treatments so much better and with the advancement in technologies treating ALL patience, they have an 89% survival rate then the 2% back in 1985. I am 43 years old and I still live on my own and consider myself a proud cancer survivor and wanted to encourage you. you. Keep me posted on your progress, stay positive and know that support is here if you have any question or simply want to talk via email. You can do this but be patient, take small steps and look for others to help you make choices that are comfortable for you.

ffconcrete
Posts: 1
Joined: Aug 2009

Mike was DX with ALL 8/21/2008 I have been thru 11 cycles of chemo CHOP and am getting a bmb next Thursday. I hope it comes back clean (i had enough) and its been a rough year for me, you'll make it mike

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