Acute Myelogenous Leukemia (AML) Support Group
Acute myelogenous leukemia (AML), also known as acute myeloid leukemia, is a cancer of the myeloid line of blood cells. Patients with AML usually present with symptoms such as fatigue, bleeding, infection, prompting medical attention. An abnormal blood test reading will then result in further testing in a hospital with a hematologist to determine AML.
My dear friends,
I wanted to start my post off with the emphasis that each person fighting this heinous disease is completely different. Jays story is not the same as anyone elses story. His battle will not be the same as everyone elses. His and Alexs decisions will not be exactly the same as anyone elses. Although treatments may be somewhat similar in many cases, the outcomes will not always be the same. Obviously, you all know this without my saying it, but there are so many on this site that have only just begun their journey and I want you all to stay encouraged, positive and hopeful despite what may or may not be going on with Jay.
Yesterday we saw his primary oncologist. I have told you all before that we have the greatest confidence in her and believe that she will uncover any and all reasonable attempts to save his life. As you know, he has relapsed since his second BMT (both relapses have occurred extremely quickly after transplant). Although the Sorafenib had originally seemed to be working, his leukemia found a way to work around it and begin generating blasts. None of Jays doctors have ever sent a patient for a third BMT, but in any event it would do no good until his marrow is cleaned out again if that is even possible. I can tell you that 2 BMTs so close together have taken a toll on his body, and a third one this close would not even be a consideration. So what to do now?
Today, his doctor is working on getting approval to use a drug called Ponatinib (another type of inhibitor) which if she can get it, she would give along with chemo to clean some of the leukemia out of his system. If that were to be successful, he would then receive a DLI (donor lymphocyte infusion), a type of mini transplant. As I understand it, this would simply boost his bone marrow and buy him time. Time unknown. He would be able to do all of this at Duke and time in the hospital would be around 6 weeks or so total assuming all went well. The Ponatinib is FDA approved for CML but not AML. This is the big factor right now as to whether we can get the drug.
We also talked about clinical trials and in particular the many trials around for Plexxikon. Its a consideration, but frankly Jay and Alex are not ready for that commitment today even if he were found to be eligible (which is being looked into). The chances of success are being weighed heavily against the fact that they would have to commit to a different city for an unknown period of time, alone and away from the support of family and friends. Its a question of quality of life left verses chance of survival. It is a heavy decision but I understand it and I understand them. Jay has spent more than half of the last year and a half in the hospital and he wants his life back with more control and on his terms. I get it and I can accept it. These two wonderful young people are a Christ centered couple. Their faith, family and friends are what are dearest to them. Although they havent decided anything for sure, they are carefully considering all. I hope you all can see that as I have been learning to let go and trying to understand that the decisions are theirs to make. As a parent, this is my most difficult challenge ever.
I felt that you all might be waiting to hear from me, so I am updating you all with as much as I know today. I will let you know as I learn more. It may be a couple of more weeks before we have a solid plan. The doctor said that it wouldnt affect things adversely at this point.
Thank you all for your continued love and support. I spend time in prayer each and every day thanking God for all of you and the blessing you have been to me. I pray for peace and healing for each of you.
Love,
Tina
I wanted to start my post off with the emphasis that each person fighting this heinous disease is completely different. Jays story is not the same as anyone elses story. His battle will not be the same as everyone elses. His and Alexs decisions will not be exactly the same as anyone elses. Although treatments may be somewhat similar in many cases, the outcomes will not always be the same. Obviously, you all know this without my saying it, but there are so many on this site that have only just begun their journey and I want you all to stay encouraged, positive and hopeful despite what may or may not be going on with Jay.
Yesterday we saw his primary oncologist. I have told you all before that we have the greatest confidence in her and believe that she will uncover any and all reasonable attempts to save his life. As you know, he has relapsed since his second BMT (both relapses have occurred extremely quickly after transplant). Although the Sorafenib had originally seemed to be working, his leukemia found a way to work around it and begin generating blasts. None of Jays doctors have ever sent a patient for a third BMT, but in any event it would do no good until his marrow is cleaned out again if that is even possible. I can tell you that 2 BMTs so close together have taken a toll on his body, and a third one this close would not even be a consideration. So what to do now?
Today, his doctor is working on getting approval to use a drug called Ponatinib (another type of inhibitor) which if she can get it, she would give along with chemo to clean some of the leukemia out of his system. If that were to be successful, he would then receive a DLI (donor lymphocyte infusion), a type of mini transplant. As I understand it, this would simply boost his bone marrow and buy him time. Time unknown. He would be able to do all of this at Duke and time in the hospital would be around 6 weeks or so total assuming all went well. The Ponatinib is FDA approved for CML but not AML. This is the big factor right now as to whether we can get the drug.
We also talked about clinical trials and in particular the many trials around for Plexxikon. Its a consideration, but frankly Jay and Alex are not ready for that commitment today even if he were found to be eligible (which is being looked into). The chances of success are being weighed heavily against the fact that they would have to commit to a different city for an unknown period of time, alone and away from the support of family and friends. Its a question of quality of life left verses chance of survival. It is a heavy decision but I understand it and I understand them. Jay has spent more than half of the last year and a half in the hospital and he wants his life back with more control and on his terms. I get it and I can accept it. These two wonderful young people are a Christ centered couple. Their faith, family and friends are what are dearest to them. Although they havent decided anything for sure, they are carefully considering all. I hope you all can see that as I have been learning to let go and trying to understand that the decisions are theirs to make. As a parent, this is my most difficult challenge ever.
I felt that you all might be waiting to hear from me, so I am updating you all with as much as I know today. I will let you know as I learn more. It may be a couple of more weeks before we have a solid plan. The doctor said that it wouldnt affect things adversely at this point.
Thank you all for your continued love and support. I spend time in prayer each and every day thanking God for all of you and the blessing you have been to me. I pray for peace and healing for each of you.
Love,
Tina
I am so happy Jay and Alex have enjoyed such time together. It is so special and important. this new trial drug is a step in the path toward recovery for all with flt3. It is powerful work to be done and another battle in the war that Jay has so valiantly fought. He is a hero. The fact he is going in again is powerful and inspiring and when i went on a trial I was sure I was biding my time. Now I am confident that in years to come all this work will make Flt3 a high high percentage of a cure. I am determined the new drugs will save many of us and many many more in the future. Just let Jay know his courage has been a driving force in my own journey.
Ed
I just emailed my doc about Ponatinib and at 8.45 she emailed me back. There hve been good results in that drug causing the Flt3 mutation to mature and die (aptosis I believe) She said it was/is definitely another option for me if I ever were to become resistant to plexxicon. I just wanted to share that she is cutting edge NYC doc and has seen good results with Ponatinib. One never knows what the future holds.
Ed
Do you have any idea what your words mean to me? The fact that you emailed your own doc and are giving me encouraging news from an additional source regarding the Ponatinib lifts my spirits immeasurably. I can not wait to tell Jay and Alex as well. I am literally sitting here with tears in my eyes. Thank you from the bottom of my heart.
Yesterday was an extremely difficult day for them. As you all know, "hospital time" runs on a whole different clock than the rest of the world. Jay started at the clinic around 10:30, he had different tests, etc, met with the doctor, and then waited for admissions. He didn't get into his room until 5:30. All the while, hauling luggage around the hospital halls. Once you do get checked in, you have the constant barrage of medical folks coming in the room one after another. It is an exhausting process. Today Jay will have to have a bronchoscopy as one of his CT scans showed something in his lungs that they want to biopsy. Ugh. That is not a fun test so I know he dreads that one.
I was feeling really low this morning. Thank you Ed, and everyone else for being there with me, for me, and walking by my side through this. God bless all of you.
--Tina
I wanted to share an update with you and tell you some of what has been happening with Jay. He finished his round of chemo with very no real issues. On the last night of his chemo he and Alex celebrated their 5 year wedding anniversery. The hospital staff was so sweet to them. They arranged for a private dining area in the patient exercise room (fancy linens, fake candle and flowers), and a hospital chef prepared a special fancy meal for them. They even had a singer come in and sing to them! How thoughtful was that? It was an anniversery they will never forget. Truly special.
Then on last Wednesday, very surprisingly, the doctors said that Jay could come home to continue recovery with the plan that he would have to return to the hospital daily for checks and treatments. We were all shocked but excited at the prospect. Unfortunately, it didnt last long. Jay was released around 7pm but about an hour later he began having severe chest pains. By 10pm were back to the ER where he was readmitted with pain and shortness of breath. It was very scary.
That night he eventually got some better with pain meds, however the next day his blood pressure dropped and it was discovered that he had a lot of fluid built up around his heart and lungs. He needed to have surgery where tubes were placed drain the fluid. Very high risk for his condition, but Jay got through it with no issues. He continues to recovery today and is doing fine. They have since removed one of the tubes from his lung, but not the one from his heart yet. Many tests are being done on the fluid removed to try and determine what caused this to happen. It might several days before we learn anything.
This is where we are now. Sorry for the long detail but it has all been confusing, traumatic, and sudden. Through it all both Jay and Alex have been nothing short of amazing.
Im so glad to have been reading about so many of you getting good reports, celebrating milestones, and staying strong. Love and blessings to you all.
--Tina
Otherwise, he continues to recover from his surgery and is working on regaining his strength. Made his first two laps up and down this hall with a walker yesterday. Yay!
Love and blessings,
--Tina
I read this site daily and am always looking specifically for news on Jay and Alex. I was so happy to read your post and want you to know that I continue to think about you and your family and keep you in my thoughts and prayers. Like so many others, I am impressed with the courage and strength that you have shown. May God continue to bless Alex and Jay.
Myra
This simply made my week. Love to Jay. Huge love. To you and Alex always as well.
Ed
It seems that my news keeps changing by the day and hour......it happens that way sometimes. Jay had to be moved to ICU two nights ago. His blood pressure and oxygen levels are issues and he is also very jaundice which indicates something may be going on with his liver. Lastly, he has developed a significant rash all over. All of these things are being looked at, tested and discussed by the army of specialists here. Literally there have been pulmonary, cardi, ID, dermo,and all the regular docs and oncs studying him.
At the moment they believe that he is suffering from constrictive pericarditis. Infection or hardening of the lining around the heart. Long term it would require surgery to remove the lining, but short term they will treat him with medication. There is possibly more than this one thing going on with him, but I guess that is always the case.
Jay is aware of what is happening although he is well drugged and somewhat "loopy". He sleeps alot and talks all through his sleep. His dreams seem to be happy ones though as he smiles, laughs and occassionally trys to sing while sleeping. What a guy. Soooo love him!
I know it isnt necessary to ask for yall's prayers. I know that we already have them as you all have mine. God bless all of you. I'll be back in touch when I can.
....Tina
I am sorry he is having so many challenges with this and may it get better very very soon. He is due - overdue and then some - for an enormous break here.
Sorry for the setback. I will keep you and Jay in my prayers.
:) Julie
I am so sorry for this setback Jay is facing. My husband told me that at one point when I was in ICU and completely it of it, the infectious disease doc told him, this is the part we call , " the Art of Medicine". Apparently my body just started fighting back and overcame something within the next few days. I will never know why some have so many roadblocks. It makes me so emotional at times to read, but I do continue to pray for everyone on this site and beyond.
Peace and love,
Andrea
Just wanted to let you know I am thinking of Jay, you and family and praying that all is going well.
Take Care,
Suzanne
Jay is always in my prayers but I will step it up a notch.
I did add him to a petition to st Anthony yesterday as the relic arrived in our city.
In my prayers
Planxty
I don't have the right words to make this post. I have stressed about the best way to word this. It is an impossible task. Jay passed away yesterday, October 25th, around 5pm. Most of you know his story. He had gone through alot. He left this world very peacefully and Alex was by his side till the very end. Our believe is that Jay is now face to face with our Lord and that gives us enormous comfort.
For each of you, I have complete confidence that you will continue this jouney with all the courage and determination that I have witnessed in your individual stories. I know this cancer can be beaten. So many of you have proven that.
All of you have my love, my sincere admiration, and my continued prayers.
---Tina