Hi cc,
Do not lose hope. I understand that there are many additional therapies to help your brother, including an infusion of your lymphocytic t-cells that will target his leukemia. Other therapies in clinical trials can help him get back into remission too, and I know several AML patients that have received another transplant.

Will you provide more information about your brother? For instance: Where (which hospital) is your brother being treated? Are you a 10/10 match for him? Do you know if he is FLT3 positive? Do you know your brother's cytogenics? Each type of AML is different.

My husband is on a similar timeframe as your brother. He was diagnosed in May 2013 and was treated with chemo only, but relapsed in December. He received his sister's 10/10 stem cells in late April (the 29th). My husband was FLT3 negative and his cytogenics showed a sole abnormality of Trisomy 8.

Most of the info on the internet is woefully outdated, I have also read a lot, but it's so important to consider 1) the age of the research/article and 2) the age of most AML patients they are talking about (70's plus), Many newer therapies are not easy to find online unless you know about them already. The "survival statistics" are incredibly old, don't consider new therapies and treatments, and are skewed toward the average AML patient's age. Seriously, most of what's out there online doesn't apply to your 40 year old brother. :)

I am no expert, but I know there is hope. Other people on this website, who know more than I do, will tell you the same. Please let us know some additional into so we can help further.

Big hugs,
Monique

There is no reason to give up -- no doubt you will all be very depressed and things will be tough for a while, but take heart -- there is hope as Monique has be so great at pointing out.

Here is something I found a few days ago
https://www.youtube.com/watch?v=xhf...

I do not know that this would be directly applicable, but what it shows is that there is a lot of working going on in many different places.

In your brother's situation the chemo probably got most of the blasts but it was not able to get the stem cell that is causing the problem. If they do some more chemo rounds (assuming he is up to it), they may be able to disable it. It is not totally known why some respond to chemo and other do not. For example, I am chemo only -- it was all I needed to get me into remission and I have been in remission for nearly five years. The chemo had to have done something to the mutant stem cell to get it so it could not reproduce any longer. But it will be up to his med team to decide whether he can tolerate it or not, and what the odds are.

If more chemo is not in the cards then there are alternative treatments. But I would take it one step at a time with his med team and I am sure they will advise the best possible route. We are praying for you. Take care -- dave

Thank you so much Monique and Dave. My brother is seen at UCLA. We have an appointment this afternoon and the oncologist called last night and said there were a lot of cancer cells. He also said this will be a long visit so I am preparing for the worst. I'm not sure what timeframe we have. My brother just celebrated the birthday of his two year old son on7/6. (His daughter is 3). I would like to take the time that we have to video record him so that the kids will continue to get to know him in the future. Does anyone know what app or device is good? I am very computer unsavvy. We lost our father to cancer and never had a chance to know him ( my brother was 9 at the time) so I really want his kids to know who he is and for him to record something for them to view on a yearly basis.

Hi cc,

I was thinking about you this afternoon...how did your brother's appointment with the doctor go today? Is there a treatment plan?

Regarding videos, it is very easy to use the video camera on the newer smart phones or cell phones. iPhones, iPads, iPods are all easy Apple products. Computers/laptops, unless they are really old, have built in cameras and video programs. But if you use a cell phone, that would be easiest.

This is heartbreaking that he is so ill and his children are so young. I am praying his doctor has a good treatment plan for him. Please keep in touch.

Monique

Thank you so much Monique. The news is not good. Blasts cells were at 31 five days ago and at 40 yesterday. BMB showed 80% blasts last week. His doctor gave him two months. There isn't too much they can do and there isn't any wonder drug. He is FLT positive with a TKD inversion? Not sure the exact term.

Thank you so much for all the advice and support as this is such a difficult time for our family. We just have to trust in The Lord and his timing.

Please check this out and see if there might be a trial he can get on:

https://www.youtube.com/watch?v=cIM-5KhU-Mg

This will lead to some others of the same subject. I do not know this doctor, but I was treated at UAB. Don't give up! See if you can't get a second opinion from Dr. Erba.

We are praying for you -- dave

Thank you so much Monique. The news is not good. Blasts cells were at 31 five days ago and at 40 yesterday. BMB showed 80% blasts last week. His doctor gave him two months. There isn't too much they can do and there isn't any wonder drug. He is FLT positive with a TKD inversion? Not sure the exact term.

Thank you so much for all the advice and support as this is such a difficult time for our family. We just have to trust in The Lord and his timing.

Thank you so much dave for the you tube video. I am so impressed with all of you guys in the up to date research that you have done. His oncologist Dr Schiller did bring up the clinical trial that was presented in the you tube video. UCLA will be starting that trial soon- he doesn't know when ( 1-2weeks?). It will be a double blind study. The drug works well with ITD but they are unsure of his scenario TKD. He may certainly be a candidate for the trial when the trials start. He has been having mild fevers nightly for the past two nights. Anyone know how to cure or curb that? I am extremely thankful for all the support and comments. It is very helpful at this time. Thank you so very very much!!!

Oh, I'm so glad your brother may be a part of this study and receive this drug, and I hope it begins very soon!!!

Regarding the fevers, I don't know what his doctors recommend. Sometimes they don't want you to use any medications to bring down the fever because they want to be able to recognize and treat any possible infection ASAP. Is he in the hospital at ucla now?

Hi cc,

I'm going to share my very very limited knowledge of a similar situation. My friend relapsed at 84 days both of us were FLT 3 ant transplanted together this is how we met.

There are no clinical trials in our country but she was put on sorafneb this is an approves drug in our country for a different condition but it also acts as a TKI in hibitor. This brought her blasts right down in 3 months enough that she got a DLI. She never got GVH and did relapse again. However after being given only weeks to live she went on living a normal life for 13 months before passing. Her baby we only 2 so she needed that year.

Who knows if she had pulled through longer what would have been available to her. So check out the sorafneb and see if it would be helpful

Prayers

Majella

Thank you Magella for the sorafenib info because I will certainly look into it and also ask his oncologist. It is good to hear when people return to normal life and are doing well.
My brother is not at the hospital currently since his oncologist doesn't feel he needs to be hospitalized. They have discontinued the steroids as well as the anti graft meds to hopefully have my cells in his body to work against the leukemic cells but at 80% blasts it is too overwhelming for my cells to rid all the blasts The double blind study only involves a pill so all the testing will be on an outpatient basis. My brother really doesn't want to be hospitalized again. But it was strange as his oncologist said that even with the meds it may be only one year long that he has just because of the aggressive nature of his cells. He is currently taking Tylenol for the fevers and you are right Monique about underlying infections so we should check with his doctor.

Once again I am so so thankful for all the replies and advice since we have received only somber news from his team.