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.
I was searching the Internet for more info regarding flt3 and came across this site. I was excited to find a support group!
I am 43 and was diagnosed with AML on March 4, 2016. As you all know, that was a shocker to say the least. I had M4, inv 16 and was positive for flt3, c-kit and wt1. I completed induction therapy by the end of March and went onto to complete 4 months of high dose chemotherapy consolidation treatment in July. Additionally, I was given a four months of sorafenib chemotherapy to help battle the flt3. Went to the Dr yesterday and BMB shows that I am in remission and all of the 3 bad molecular markets are now gone.
I have to say that I am freaked out, based on the potential of it coming back. Especially, during this first two years. The Dr is going to stay on top of it through monthly visits and tests, but that doesn't make me feel much better. How does everyone here cope with this fear? I am trying my best to stay positive for my family and young son, therefore they don't see that on the inside I am in turmoil. I know that everyday is a gift and I am also working hard to make sure that I treat each day as such.
Thanks for the advice.
Firstly, congratulations on the remission. I am a fellow FLT3er, or flitter as I like to say. I had a transplant and I am 4 years post diagnosis and will be 4 years post transplant in December.
As for the fear of relapse, it subsides over time. But speaking for myself it has never really gone away, even after 4 years. And I know of people much further out than me who still think of the possibility of relapse from time to time. That's not to say that it consumes our lives but AML is a life changing event, make no doubt about it. We all have the fear of the disease chasing us down again and maybe the next time we won't beat it. It's scary, it's real and it's normal.
All I can suggest is keep busy, find things to distract you, read historical novels, pulp fiction, romance novels, whatever interests you. Don't read too much about the disease on the internet and if you do, take it with massive grains of salt. Work as much as you can, if you can. Join a support group at your clinic. Take something to help you sleep, I take Ativan (only half a milligram) at night to take the edge off. I'm afraid it's a lifelong struggle but it will get better. I know people with other types of cancers that share the same fears so we have company and the support of many others. I've often said the mental aspect of this disease is worse than the physical. I'm not often right but in this case I think I was.
I hope you find something of help in this post. I know others will chime in and add to the thread and hopefully you will get the support you are seeking. Good luck, stick around with us and let us know how we can help.
Lou
To the club no one wants to belong to. You mentioned searching the web for FLT3 info. Let me start off with some advice about the web-stay away. Here's why, the median age for AML DX is 72. You are almost half that age. AML statistics are very very skewed by this, also many of the stories online are the negative ones and finally, the medical articles are difficult for a lay person to understand. I have provided a link to an excellent article on cancer statistics that a re-read often.
http://cancerguide.org/median_not_msg.html
Second, huge congrats on remission-that is a great milestone! Based on your timeline, you seem to have sailed through consolidation. I was 48 at DX 3 1/2 years ago with Inversion 16. I took the chemo only route and I'm nearing three years post treatment in Nov, by the grace of almighty God!
Relative to worry, AML is such a life altering event. No one is exempt from worry. One thing that I find extremely helpful is reading Mathew 6 regarding worry and fear. Worry does not gain any additional time so why waste the precious time worrying about something you cannot control.
And finally, I am provided a link to another AML support group on LLS for more info
http://community.lls.org/forum/25-acute-myeloid-leukemia/
Blessings,
Julie
Thank you for reading my post. It is always encouraging to talk to people who are or who have battled this disease.
I agree that the mental aspect is sometimes worse than the physical! I figured that the fear never really goes away. I just hope that I can ease back into some of the more routine/normal aspects of my life and it will help to push the fear (and some of the sadness) a little further down from the surface. Right now, I look at my seven year old and get all choked up. I cannot help thinking about the fact that I could get sick again and he might grow up without a mother.
Early on my Dr did mention a potential referral to the transplant center. Then, he whopped me with the high dose of Cyterabine during consolidation. I think that is was something like 6000 mg per infusion. I had six infusions the first week of every month., for four months, That, plus the sorafenib each month. He did a bone marrow biopsy after the second month of comsolidation and said that he was seeing positive molecular progression.. After that he did not mention the transplant center again. i think he was reserving it in the event that we need to do it later down the road. i hope and pray that I will not need it.
I will stick around for sure. Thank you again!
Exciting to see that you are coming up on three years post treatment with chemo only. That is encouraging! Did you do the high dose Cyterabine?
You are right, the information on the Internet is either super scary or hard to understand. I am trying not to read through all of this stuff, but have to admit that I have gotten sucked in a few times while trying to obtain information. I am looking forward to reading both the article and .Matthew 6!
Thank you for your response and your story!
Staci
PS-Sorry if there are any spelling errors. I am typing on my phone and the print is almost microscopic. Plus, my eyesight has gotten worse during all of this.
Yes i had HArc although it was lowered as i progressed due to slow platelet recovery. I stated at 3 and ended at 1.5. Great that you've been on a flt3 inhibitor as well
Julie
Also a flt3 positive but I had the stem cell transplant December 2013. I know this doesn't help right now but the fear does subside with time. There have been many times where I thought I had relapsed and a couple where I was absolutely certain I had, but had not, thank god. I've said this many times before on here (where people may be getting sick of hearing it) but exercise has been a huge part of my recovery and maintaining a good mental outlook through this. Find something that you enjoy doing whether it be yoga, walking, running, cycling, whatever and do it on daily basis. And decide now that even if it does come back you are not going down without a fight. It also helped me to know exactly what the plan is from my docs if I were to relapse. Takes some of the fear of the unknown out of it. Glad your treatments have been a success and that you are doing well. Hope this helps some. Prayers sent for your continued health.
davej
Thank you for your note. I am going to start walking more at night after work. Plus, work will get my mind off of things. I go back in a week. It is hard sitting here at home everyday, with nothing but time. Every closet, drawer and cabinet in my house has been cleaned out/organized these last few weeks.
I am glad that you are doing so well. It is encouraging!
Staci