Hi Gean,

How deeply sorry I am that you have had to seek us out. This group is not very active anymore. However my journey was quite similar to your daughters. I was diagnosed is 2012 FLT 3 positive. I had a fairly similar protocol to your daughter. I found the transplant process fairly ok actually not much different to induction or consolidation. I did get dreadful mucositis and chronic headaches. The transplant itself is just a bag of cells rather like a blood infusion.

I lived close to the transplant hospital for 6 weeks after my release but I've met people who have done 4 weeks near the hospital and 6 months every case is different.

My recovery was standard I did get acute gvhd of the skin and at 15 months post transplant I developed cgvhd of the skin. At 5 years 7 months post transplant I'm still being treated for gvhd with immune suppression and monthly ivig infusion. It is all manageable the prize in all of this is survival . I'm content with the new me.

Your daughter will have her own individual journey with this disease I've yet to find 2 the same in all my years attending the transplant hospital. The goal is survival. I may be able to help with queries you may have as you travel this Road or I may be just an ear you can bend either way I'm here if you need.

Prayers for you and your family.
Majella

Welcome Gene,

As Majella shared, this group is not as active as it once was. I am nearing 5 years since dx from aml treated with chemo only and doing well by the Grace of almighty God. There is another support group that is more active for additional support at the Lymphoma leukemia society at
https://communityview.lls.org/groups/acute-myeloid-leukemia

Please know as Majella shared, this cancer can be beat.

Blessings
Julie

Thank you both for your positive input. It gives us both hope. We will be meeting with her transplant team next week. I'm told it can be overwhelming. We really were told this is her best option. We needed to hear that their are people successful with treatment. Thank you again.

Gean

Hello Gean. You've already gotten some good advice from my friends Majella and Julie. Just to add to their stories, mine is similar to Majella's. I am a flt3 patient also, had a sibling transplant in December 2012 and now over 5 years later I am leading a normal life with manageable side effects, much more manageable than some people with other ailments. Good luck, keep your eye on the prize and keep your hopes high.

Lou

I had a stem cell transplant from my brother. He was not a perfect match but close. I think my transplant took more out of my family than me. I was 52 at the time and none of my kids were married and I had no grandkids. God blessed me and I have seen all 4 marry and in July I will welcome my 11th grandchild. When I go to the cancer hospital where I had my transplant I meet others who are now going through what I once did and I reach out to share with them and help them to see life after AML can be achieved.