| Author |
|
sammac
New User
Joined: 23 Jan 2008
Posts: 3
|
 Posted: Wed Jan 23, 2008 9:43 pm Post subject: Anybody out there with M4, t(6;9) AML? |
 |
|
Hi All,
I have been lurking for a while and this is my first post. My husband was diagnosed with AML in April last year and he has had two lots of chemo which put him into remission. He has t(6;9) with FLT3, M4 AML which is quite rare (1% of all AML adult presentations) and it is in the poor risk category. All the literature says that his only real chance of long-term survival is a BMT but we don't have a donor so we have had some molecular monitoring done to assess the level of the disease before we look at other options such as a mismatch MUD or a CBT. The results have just come back and there is some evidecne of the disease but it is minimal (there has been a 3 log decrease since his original BM Bx). Which is good but as they don't have a lot of data on this subtype, they are not exactly sure what this result means so we are going to follow-up in a month's time and see which way it is moving if any. It is so stressful knowing it could come back at any time  and I just wanted to know if there was anyone out there who has had a similar diagnosis and what their expereinces have been.
Sam |
|
| Back to top |
|
|
|
brainman
Site Admin
Joined: 13 Oct 2005
Posts: 5613
Location: Tennessee
|
|
| Back to top |
|
|
|
sammac
New User
Joined: 23 Jan 2008
Posts: 3
|
| Posted: Wed Jan 23, 2008 10:00 pm Post subject: Post subject: Anybody out there with M4, t(6;9) AML? |
|
|
Thanks Jim. Yes, it has been a steep learning curve trying to understand the best path to take. It's rarity doesn't help matters but I am doing all I can to make sure we make the most informed decisions about his disease. It has been a hard year and I am so worried that our children (aged 6 and 2) won't have their Dad while they are growing up.
Sam |
|
| Back to top |
|
|
|
brainman
Site Admin
Joined: 13 Oct 2005
Posts: 5613
Location: Tennessee
|
|
| Back to top |
|
|
|
sammac
New User
Joined: 23 Jan 2008
Posts: 3
|
| Posted: Wed Jan 23, 2008 10:35 pm Post subject: Anybody out there with M4, t(6;9) AML? |
|
|
Yes, I am aware of that Jim but with due respect, no amount of trying to keep the immune sysytem strong will be of any use if the disease re-manifests itself  , which is what we want to avoid. |
|
| Back to top |
|
|
|
rocketpup1
New User
Joined: 15 Sep 2007
Posts: 4
|
| Posted: Tue Feb 05, 2008 10:05 am Post subject: AML m4 |
|
|
I am a survivor of Aml m4. I went through my induction therapy in 12/1991 and received my last chemo in 8/92. I was on a study and have done well. I was 48 or 49 then and had a 12 yr old. Being the patient is so hard--I can identify how your husband must feel. If you would like to talk more I will be glad to listen. I don't know all the specifics of your description of his type of leukemia but it sounds pretty similar. I don't think there is a good kind. I know your husband is fighting as hard as he can and worries over your worring. Let me know if I can help. I didn't have a donor either and ended up donating my own marrow and having it frozen. I just take one day at a time.
_________________
I celebrate Life-Bad Hair Days for there were days I had no Hair !!!. I am 16 ys and almost 1 mo cancer free. I get checked 1 time a yr. I had AML Luekemia but Leukemia didn't have me. Praise God--I remain free. |
|
| Back to top |
|
|
|
melvyn
New User
Joined: 25 Jun 2009
Posts: 2
Location: 16A Bulusan Street,Manadaluyong City
|
| Posted: Thu Jun 25, 2009 6:00 am Post subject: Re: Anybody out there with M4, t(6;9) AML? |
|
|
Hi sam, I guess we have the same experience. My wife, 29 yrs old is also suffering from AML. We have 2 kids, a girl 3 yrs old and a boy 1yr old. My wife undergone a chemo treatment just last January 2009. she was diagnosed last December 2008. According to her Doctor she must have completed a 9 chemo treatments but since it's too expensive and we have no enough resources for that treatment, her medical treatment is put on hold. Right now, she's just at home with our 2 kids. Hope we can find generous people or organizations who would be willing to help us. Add more prayers as we truly need it especially on our case. Hope we can talk more about this case as we have a common experience right now.
Melvyn |
|
| Back to top |
|
|
|
brainman
Site Admin
Joined: 13 Oct 2005
Posts: 5613
Location: Tennessee
|
| Posted: Fri Jun 26, 2009 9:15 pm Post subject: Re: Anybody out there with M4, t(6;9) AML? |
|
|
melvyn, I do hope Sam will reply; the last time she posted was Jan 2008!
I am very sorry about your wife's AML. My father died in 2006 or its sister cancer ALL. As I told Sam, his death ways not directly cause by his cancer but due to a systemic infection that took advantage of his inability to fight off infections.
You and your wife and kids are in my thoughts and prayers.
_________________
Jim
Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
http://cancerforums.net/viewtopic.php?t=2405
My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029
Twitter: @JimHawkins54 |
|
| Back to top |
|
|
|
melvyn
New User
Joined: 25 Jun 2009
Posts: 2
Location: 16A Bulusan Street,Manadaluyong City
|
| Posted: Sat Jun 27, 2009 10:40 am Post subject: Re: Anybody out there with M4, t(6;9) AML? |
|
|
Hi Jim,
Thanks so much and I truly appreciate your kindness. PLease pray also for us so we could find people or any organizations who are willing to help us continue the medical treatment of my wife.
You're right, that one that threatens Leukemia is but the infections that come in to patient, like when a person who is sick has a very low immune system.
I don't know if other people entertain of taking natural or traditional medicines or the so called Herbal Medicines/products. But looking back in our experience, these herbal meds truly help as immune booster. I witnessed it during the first chemo treatment of my wife. These may not really be a direct medicines but in a way it really helps in sustaining one's immune system.
Thanks and God bless!
Melvyn |
|
| Back to top |
|
|
|
brainman
Site Admin
Joined: 13 Oct 2005
Posts: 5613
Location: Tennessee
|
| Posted: Sat Jun 27, 2009 6:51 pm Post subject: Re: Anybody out there with M4, t(6;9) AML? |
|
|
I would certainly do anything possible to keep her strong during her treatments. I am not against using safe vitamins, nutritional supplements, herbs, etc. as complements to standard treatments. Just be careful. There is a lot of OTC "snake oil" for sale. Make sure you tell her medical team about all the supplements she is or will take. Some can interfere with the chemotherapy agents.
_________________
Jim
Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
http://cancerforums.net/viewtopic.php?t=2405
My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029
Twitter: @JimHawkins54 |
|
| Back to top |
|
|
|
|
Search 
Email Digests
Register to post
Profile 
Check private messages 
Log in
What is this ?
We subscribe to the HONcode principles. Verify here. All content and posts are copyright.
