Hello Everyone. I'm a new member and a first time poster. I'm not even sure if I am in the right group, but here goes. I have a 27 year old son-in-law (who is thought of as my very own son). He was diagnosed with AML and FLT3 almost one year ago. What a journey this has been as I am sure that you all know. He has been in the hospital about half of the last 365 days with one thing or another. He did achieve remission after his first induction chemo and because of his FLT3 he did receive a BMT from his brother (a full match). Unfortunately, his cancer came back rather quickly after the transplant. The doctors "think" it may have been too close of a match. He has since gone through another round of chemo and has been on an inhibitor drug for the FLT3. He did finally acheive remission, but it has taken quite a while for him to regain enough strength back to undergo another BMT. He does have another matched donor, this time from the National Registry. We thought we were headed for the transplant this week, but his cancer has re-appeared and now we don't know what is going to happen. He goes back to the doctor tomorrow to hear what the new plan will be. I have been reading through some of the related posts in this group, and I have found them to be so encouraging. I am hoping that his doctor will have some new idea, or drug that will help his situation. Until then, we all pray. --Tina

Tina,

I am heartbroken to hear about your son-in-law. He is so young to suffer through all of this. We have several FLT-3 bone marrow recipients. Andrea was put on the tyrosine kinase inhibitor AC220 and did very well in preparation for her transplant. To date, she has been a champ. Where is your son-in-law being treated? UNC? I am sure their oncology department is first rate, but if they do not have protocols going on, you might want to get an opinion from MD Anderson, Sloan Kettering (where I was treated), Dana-Farber, or Fox-Chase. These are all first rate institutions.

If he or you have any questions or is in need of any type of support, we are there for both of you, and for your daughter. This must be so rough on her.
Praying for you,
Cliff

Tina:

I do not believe there is a better place you could have come -- and not a better first responder than Cliff. Let me add to his my sympathy for what your son in law and all the rest of the family is going through ... we have been there and we know -- its no fun.

Your medical team knows best, but I never heard of "too close a match" -- that is a new one. I am a three year survivor of AML/MDS with chemo only -- a very rare case of making it without a transplant; but I am now 69 so I doubt that is in the cards. If things get to a point where the med folks do not seem to have an answer, check out the alternative treatments thread. To get to it go up to the left here where it says My Support Groups and click on Acute Mylo.. Leukemia under that. That will take you to a list of threads, and the alternative treatments will be one of them. I am not saying this as a first resort; I am recommending it only as a last resort ... but it does seem to be one that has worked for a few of our people, especially the Osteo-K. Please keep us up on how things are going. You are contributing to our knowledge, and some day this list is going to be mined for all of the info on it, so please help everyone out. Thanks so much -- dave

Tina, I am so sorry your son in law has had to suffer so much. My heart goes out to you both.

I meditate every morning. It brings me peace. I too have had a pretty hard time this past year with my AML. I also use this time to pray for others. I will keep you and your son I'm my prayers.

HUGS
Lily

Hello everyone..... this is the last place 2 weeks ago i would have thought i was saying hello but life works in funny ways.

Last week my mum was diagnosed with AML (not sure of sub cat until biospy results are back end of this week)

Have been on a steep learning curve and she started last Thursday on a FLAg-Ida over 5 days (finished yesterday) which consisted of Fludarabine and Cytarbine. then so far schduled for another 2 sessions after that

She is a 65 year old, who up until 2 weeks ago had good BP and didnt take 1 tablet for any aliments.

She is ok with the treatment and it appears the doctors are "proactive" than "reactive" giving all anti nausea, bacteria, etc etc.

I feel like at the moment i am not worried about the AML or the drugs to help with this, but placing mum in a bubble to make sure she is not exposed to any sort of bug / flu when she has no immune system.

I am 100% positive, but sometimes feel like the doctors / nurses know something we dont ??? is it just cause they deal with it day-in day-out ?

thanks for all your stories :)

Another loving Aussie,

These down under parents must be doing something right, because their children adore them!

Don't worry about the matter-of-factness of your Mum's physicians. They do know a lot that you don't know, and that enables them to take care of patients to the best of their ability. They do not hold secrets from you. However, you must ask them questions, even uncomfortable ones, because many physicians do not like to bring up negative hypotheticals. Neither do I.

She'll get through all of this. I am now 60, not 30, and developed my AML at age 58. So your Mum and I are really contemporaries. Make sure she does a lot of deep breathing while in bed. Ask for an incentive spirometer. You don't want her getting lung infections while she is getting her treatments. Get her out of bed, etc.

I would be the first to admit that the treatment for AML is not fun, but think of the positives...all of us with this disease have the chance to get well again. There are many other horrendous malignancies and other diseases where the prognosis is not nearly as rosy.

BTW. Our swimmers are better than yours. Just thought I'd throw that in.

Take care of yourself, while taking care of your Mum. You are the daughter that parents dream of. My daughters have been the same to me.

Cliff

Hello fellow Aussie

Where is your mum receiving treatment.
I'm glad that she handled chemo well.My team were also very proactive with all the anti nausea and other drugs.
My husband was my gatekeeper with visitors when my counts were low.If anyone had a cold or any of their family members had colds he was vigilant in telling them not to visit.Nothwithstanding this I always managed to get a fever when my counts were low which always landed me back in hospital.
Make sure she follows the low bacteria diet and as cliff sys, walk,walk and more walking.
Take care

Lisa

Tina and Aussiemum -

So sorry that you are finding yourselves here, I know what stress you are feeling now! I am sure that you will find, as i have, that this is a very warm and supportive community. I will be thinking about your son-in-law, Tina, and about your Mom, Aussiemum. I hope it will help you to feel that you are not alone in your worry.

Be well.

Robin

What a warm welcome and thanks to all who responded to my first post. I think I will try to figure out how to start a new discussion so that I can explain more clearly where my son in law is on his journey. We just spent most of the morning on an appointment with his doctor trying to figure out what our next action plan is going to look like. I'll put all that info in my new thread. I have been "lurking" on several forums over the last several months and I am glad that I have decided to join this one. What a fantastic group of folks here! All of you are so kind to share your stories and hope for all of us. Thank you, thank you! --Tina

WOW !! I was very nervous with my first post as I am still learning so much !

Thank you Cliff, Lisa & Robin for your responses.

Mum is at Sir Charles Gairdner in Perth, and she has been going for a walk every day, even just to the outside gardens to sit for 20 minutes and then back again. So far she has been trying to make sure her everyday is as normal as it can be.

She has been getting up showering, getting dressed and eating all the low bacteria food she is receiving and drinking her fluids.

today is day 7 so I know we are heading towards the low blood counts.... yesterday they were ok, but they gave her platelets not sure what they are today (but the nurses are great and giving them daily to us to see how they are decreasing).

I am glad I found somewhere where I can ask questions as sometimes you feel like you are asking too many, or not the right questions, then you remember one you should have asked and no one is around.

thank you all :) .... PS to Cliff, I agree our swimmers suck at the moment, but our beach's still are the most beautiful :)

Aussiemum -- welcome aboard and ask away -- that is what we are here for. One thing you said bothered me a little -- your mom goes out into the garden. We were not even allowed to have flowers on the floor, so be very careful. I guess its because like fresh veggies, flowers can carry bacteria. For sure, don't let here smell any and I would avoid all flowers -- check with your nurse practitioner on it. You cannot be too careful. -- dave

Tarheel -- I'm Bama, but I won't hold that against you. Yes, this is a great forum. You might have to click on Home to start a thread -- I think it is called "New Topic" or something like that. We will definitely be interesting in learning all about you. I am an over-three year survivor of AML/MDS with chemo only -- I am now 69. I will be looking for your thread -- dave

Dave - thank you for your concerns, by gardens I do apologise, I meant more just outside where there are trees, no flowers which we have been very strictly told to us and all our friends who automatically want to send some

The outside areas are very basic, but gives her a break each day in the outside world :)

thanks again to everyone

Hi there Aussie!
I am thankful you have found our support group. We will all support you with anything you may need.
I know how you feel, one minute mum is fine then she is diagnosed with aml. When my husband was diagnosed january 2012.we couldn't believe it. We assumed it was a bad flu.
Since that time. there has been so much progress with treatments for aml. Have hope and faith, you will need to be strong to help mum get through the chemo and the after effects of the chemo can be difficult. You will have loads of help and support from everybody he
I have found CERTAIN doctors, nurse practioners and nurses are an absolute Godsend Whenever my husband Ben has faced another trial in his treament. There are always those who will go that extra mile to get the help when it's needed.
you and mum are in our thoughts and prayers,
your friends Ben and Sandra.
psalm 27;14

thanks you Ben and Sandra for your lovely words.

We are on day 8 of the induction phase (mum had 5 days of chemo) so at the moment mum has just felt a little nausea but nothing excessive.

Yesterday counts well very low so she had blood and platelets...doctors and nurses have been very good :)

Figures crossed as still waiting on genetic markers which should arrive today (which in hospital time may mean some time next week)

Thanks everyone