Louise,

I am sorry to hear that you have joined this group. Happy to have you here, but sorry you have to be here. Any questions or concerns you have please let us know. Also if you just want to yell this SUCKS that is fine. I am 31 now, was 29 at diagnosis. Believe me I understand the not having children thing. I will never have biological children. That was a hard pill to swallow and a hard realization. I do though have a daughter, she is adopted, and she is the light of my life, my miracle. So there are options, for the future. Not something you have to worry about now. It is okay to be angry and sad about this. I am angry and sad for you. I had induction and a transplant. So any questions or anything you need ask.

Abby

Welcome Louise,
This forum has helped me so much through my Stem Cell Transplant and we will be here to help you in any way that we can.
If you have to scream scream don't keep it in. Its a devastating illness to have. I will be 6 months diagnosed on the 1st November and I still have not fully come to terms with it.
Planxty

Hi Louise,

My course was similar to yours. I failed my first induction, but went into remission on the second try. I am 14 months post T-cell depleted allograft from a savior from Germany. I am nearly twice your age and have children. Do not feel guilty for voicing your grief over the likelihood of not being able to conceive your own child. It is sad, but it opens up the wonderful possibility of becoming the mom of a child who will thrive with your love. In many ways, your life will be doubly blessed. I am praying for you to find a 10/10 match who will restore you to excellent health. You have a whole long life ahead of you and that life will be just so much sweeter after experiencing what lies ahead in the short term. After that, you will sail the seas of life with the wind at your back.

Cliff

Louise: Welcome to this list. As you have discovered, this list is the place to be -- lots of help from lots of people who have been through what you are now going through. Let me speak to the issues of not being able to have children after chemo. It is true that the chances get less likely, but I would notrule it out altogether. Once you get into a total recovery mode you will see that many of the capabilities you lost will begin to return, and while some may never be the same, others will. You might check out the Internet for other women who have been though chemo is there are not some on this list who were able to have children. I do not mean to give you false hope, but my experience with doctors is that they tend to want to state the worst so that you will not hold them responsibile for downturns when something negative happens. It is not their fault. But don't give up and don't get pessimistic -- you are doing well, and you will get through this. Work with your medical team and please keep us up on developments. Take care -- dave

Hi Louise,
I too read these threads for awhile before I started posting. I have found it very helpful and have been blessed by everyone's advice and experience. It helps to know you are not alone. I am so happy for you that the second induction worked and you are now looking toward transplant. I will be praying that they find a perfect match for you very soon. Thank you for posting about your experience with Clofarabine on my other thread. It definitely helped bring down my anxiety! See one of your first posts have already helped me so much! Thank you!
Take Care,
Suzanne

Louise, Welcome.

I also had two induction chemo to get to remission. My doc told me i I needed transplant during the induction treatment. While waiting for transplant, I received one consolidation chemo. I have three siblings but none was a match. I learned from my doc they identified one donor for me but it didn't go through because of the donor's blood profile showed some problem. At last, I received umbilical cord blood transplant in mid-June this year. To be honest, i was somewhat (mentally) numb for many months. This disease came so suddenly. There have been so many to deal with and so many unknown, I only have one option, that is to stay positive, live one day at a time and trust my doctor's judgement. Of note, I heard from my transplant coordinator, the umbilical cords came from Taiwan. It's a miracle.

Now I am 4 months post transplant. I am doing fine - the immunosuppressants are being tapering off. I am not completely back to normal yet but I feel a lot better. As you see from the posts, many friends are waiting to get transplant, ALL of you will go through this.

It's an amazing journey. I recalled the total number of days I stayed in the hospital was 108 days (two induction, one consolidation, and the transplant). In addition, there has been many doc visits. It's not easy but manageable. You will be surprised how strong you are when one day you look back. Stay strong, one day at a time.

Violet

Hi Louise,

Welcome to the group :) There is a lot of wonderful and very supportive people on here. Im like you, getting ready to go in next week for my second round of consolidation "back in the joint" as you say :).

I think its great you adopted, Im an adopted child myself, so to be adopted by parents is a blessing for everyone. Keep your faith in God and youll be fine. Since my diagnosis back in mid August it has opened my eyes to so much and made me appreciate the small things in life. .

Louise, It's understandable that you want to have children. That day will come one way or the other. Now it's time to take good care of yourself and beat AML.

Violet

Hi All!
I hope and pray everybody N. E Stateside is doing well after Sandy passed over.

I am so thankful for the people on this forum.
Ben, my husband who has aml is a survivor,so far. Thank The Lord! I wrote a brief account of his history earlier on this thread. Please feel free to ask me more questions.
I just want to vent a little bit and share what is coming up for us.
Friday 2nd November 2012 is DAY 0 for Ben's SCT.
What a mix of emotions.! One minute it's excitement at this opportunity for a cure and the next it's so daunting just to think of it. Now Ben is perfectly settled with his decision.; so it's just me feeling this trepidation.
Ben has had all his prelimimary test and is good to go. He has not long finished three days of low dose chemo. He has started his cyclosporin ( to prevent GVHD) Is taking Voricanazole anti fungal, acyclovir to prevent herpes type virus and will take anti nausea pills before and after, low dose full body radiation, which he has on Friday morning. (That scares me) Cell cept starts after transplant.
The SCT should take place late Friday afternoon. I am praying that all will go according to plan.
We keep updated on you all Dave, Ollie,Cliff Abbey, Phil Trish Nic,Andrea Violet Is there anyone I missed ? I Thank you all and this forum is a true blessing for us. Please keep Ben in your thoughts and prayers.

Sandra.
.

Sandra -- great news Ben is satisfied with his decision. Sometimes being satisfied with it and not looking back is more important than the decision itself. I know Ollie was satisfied with his decision to go chemo only and even though it did not work out totally, he had a good year before he had to get his transplant. I am not looking back -- things are working out well for me, and if I should relapse I will deal with that when it happens -- for sure I will have much more info then than I do now. So GREAT for Ben to get it down and go for it. May God bless you in taking care of him and Ben in getting through it and back to normal. -- dave

Sandra,

Tomorrow (Ben's new birthday) comes one day before that of my eldest daughter. I will be thinking about him all day. One thing you will find is that the moment of receiving the bone marrow is somewhat anticlimactic. It takes minutes and you fell the same. But somehow, with the transplant comes a feeling of thanks for the good will of some absolute stranger. As I have mentioned, my bone marrow came from Germany. It almost boggles the mind to think about that.

Now, just tell Ben to be patient. At first, he will see nothing happening to his counts and will probably need transfusions of RBCs and platelets. Then, as if a miracle, his cells start coming back and once they do, they quickly rise to levels that will allow him to go home. I was in the hospital for 23 days including the week of conditioning for the transplant. The day I left, I walked 3 miles with a mask and gloves through the streets of NY. It was a liberating feeling, despite the stares. It will be great to put this behind you and Ben as he starts on the road to good health again.

Cliff

Hi, I'm Linda and brand new to this world.

My younger brother, Scott (45) was officially diagnosed with AML yesterday (I'm not clear on exactly what type yet). He lives in a city without sufficient facilities for treatment, so they are sending him over here to Seattle to start chemo and get established with an oncologist today. My sister-in-law will be staying with me during his treatment and I assume that my other siblings (including his identical twin) and I will be lining up for donor typing. He and his wife have no children, so we are hoping one of us will be a match.

We're all in shock but know that my brother is a fighter and we're all going rally around him and his wife to help him beat this thing.

I haven't read a lot of the posts here, but plan to because knowledge is power.

Thanks and best of luck to all.

Linda,

Sorry to hear about Scott. However, he has an identical twin, and what could be better than that when it comes to a BMT. They have everything the same, so he will not need immunosuppression and will not get GVHD. I wish him the best. Welcome to this group. You will never find a more congenial bunch (myself excluded). We are here to answer your questions.

CLiff

Linda -- Welcome to this list -- I estimate that at least a third of those on the list are care givers as opposed to patients -- so you have come to the right place. I am close to being a three year survivor -- chemo only -- with MDS (still have it according to my oncologist, who kind of wonders what I am doing walking around), but hey ... whatever it takes. The things they can do for AML now are amazing and we have a very high survival rate on this list.

The one thing I can think of now is if people are going to visit with Scott they need to do it now. A few days after his first chemo round he will be getting neutropenic (the chemo kills off all the white blood cells so he will have no natural defense against the junk that our bodies kill off routinely every day). What I am saying is that after a few days past the first round he really should not have visitors, especially kids. If so they need to keep away from him and even wear a mask. He will need to wear a mask when outside of his room in the hospital. This is very important -- they will give you a list of things he cannot eat (e.g., anything that can have bacteria residue -- salads, for example), and other precautions. For example, I carried a paper towel around with me so that I would never touch anything that had not be sanitized.

I know this sounds like bubble boy, and it is (exactly!). The chemo and the leukemia are not the problem here -- its the infections that are dangerous, and an ounce of prevention is with a ton of cure. All those that I know of who we have lost off this list have succumbed to infections. Scott can and will survive if you take the necesary precautions and do not take anything for granted.

If he is going to have visitors at all, now would be the time. -- dave

Hi Linda,
Sorry to hear your brother was diagnosed with AML, it comes out of the blue. I am 49 years old and was diagnosed with AML Nov 2011. I was first treated with chemo but relapsed Oct 2012. So now headed toward induction chemo again in preparation for a transplant. I only have one sibling and he was not a donor match, so now they are looking in the national registry. Your brother having an indentical twin will give him a super option if a bone marrow transplant is recommended. I would recommend everyone getting their flu shot and make sure you are all updated on your pertussis vaccine. Infection is a big risk for us as we go through our treatment due to Neutropenia. His MD and RN will be able to advise you on precautions. Take care and let us know what questions you have.
Suzanne