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AML subtype M2

MICREN66
Posts: 7
Joined: Jun 2010

I am a 43 yr old female that was formally diagnosed with AML right before Mothers Day on May 7th, 2010. I was released from the hospital to spend the holiday with my family (husband, 9yr old daughter and parents)and then readmitted on May 12th to begin the induction phase with idarubacin and cyterabine (7+3) therapy. I came through with no side effects except for being very tired the last 2 days of treatment and mouth sores. I received 2 units of blood and 1 unit of platelets and was then released to go home to my Mom's on May 19th.

I remained at home for 5 days and then readmitted for 3 days at the end of May for a temp of 100.7 during a regular visit for bloodwork. An antibiotic IV was started and after extensive testing, nothing was found to be the cause of the elevated temp so I was released to return to my Mom's and continued the IV at home. Since that time I have returned to my own home with my husband and daughter and continue to have bloodwork done 2x per week to check counts. At this time I have not been through any of the consolidation therapy but have been told that based on my blood counts that I am in remission since there is nothing showing up in the blast. A biopsy done 14 days following treatment also showed no leukemia cells / a 2nd biopsy has not been done as of yet - my Dr is wanting my platelets to get up to 100,000 before doing the next one.

I was sent to Duke Medical center at my Drs insistence and met with a transplant Dr who presented me with 8yr old documentation to support his claim that a transplant is my only option for survival based on the type/strain of AML that I have. Further review of the documentation indicated that out of the 1,213 people involved in the study, only 7 people had the same strain of AML I have been diagnosed with but does not indicate ages, male or female, health of participants prior to being diagnosed or what type of treatment they were given and that only 1 of the 7 survived past the 5yr mark. When questioned about the validity of the study and how it relates to today and to me, the only thing the Dr said is that the treatment has not changed and that the info was collected over 20 yrs and that is the newest info they have since no other studies have been done. Needless to say I did not have a "warm and fuzzy feeling" when I finished speaking with the Dr and came home very overwhelmed wondering what to do and hoping I make the right choice for my family.

So now I feel like I am at a "crossroads" having to make a decision on how to proceed with treatment - continue with chemo for 3-4 consolidation treatments and hope to be in complete remission and pray for no relapses or go through with a transplant and take my chances in hope that I survive it and don't suffer any of the side effects that the Dr described and basically freaked me out as a result.

My faith is very strong and I have an excellent support system with family, friends and church family. I know GOD is the greatest healer and physician and nothing is more powerful than prayer. I have every intention of kicking this awful disease and getting my life back and be the involved and active Mom and wife I was prior to being diagnosed.

rathgirl's picture
rathgirl
Posts: 147
Joined: Jun 2010

i am 19 and i have aml sub. m3. i was diagnosed in december of '09 and am in remission for about a month now. i had the same treatment as you (i think 7 days continuous of one type of chemo plus 3 days of another type of chemo) i was hospitalized for 6 weeks while my counts recovered from the chemo killing them. i lost count of how many units of blood and platelets i got. lets just say i got 9 units of red blood cells in 2 days before i was even diagnosed. after i was discharged from my 6 week stay i had a bone marrow biopsy done and the results showed nothing. they did 3 more precautionary rounds of the 3 day chemo for 3 months and then did another biopsy. the last biopsy determined that i was clean. i am currently having monthly blood tests done. i actually have my first one tomorrow.

i know what you have been and are going through. it sounds like they caught it early so that is good. that is what they tink about me. i went in 3 months prior to my diagnoses for an anual check up and my counts where fine and then BAM! it just hits you like a freight train! believe me i know exactly what you are going through!

the chat room is an awesome place to talk to others that have and are going through what you are going through. feel free to talk to me and/or them if you have any questions!

MICREN66
Posts: 7
Joined: Jun 2010

Glad to hear that you're in remission....hopefully you remain there for the rest of your life. It's amazing how much this takes over your life once you are diagnosed - the drs appts are enough to wear you out. I am currently waiting on results from the latest bone marrow biopsy and am praying hard the results indicate no cancer cells in the marrow. I know I have more chemo to go through but the Dr has not indicated exactly when he wants to start it. I have only undergone the induction therapy at this time and it was back in May.
All of my bloodwork has been clear so far and my counts are finally coming back up - none are in the normal range as of yet but getting there.

Please let me know what your latest biopsy report was - hoping for a clear report for you too. Thanks and take care.
Talk to you soon.

rathgirl's picture
rathgirl
Posts: 147
Joined: Jun 2010

oh yes it changes everything once you are diagnosed. my last biopsy re****s came back clean. they didnt find anything in the marrow that shouldnt be there. i know it will be the same for you! its a good sign that your counts are comming back! they probably waiting for the results or ur biopsy to determine what type of chemo u need and how much for the next round. that is what they did for me.

your results will be "squeaky clean"!!!
thanks and take care!
rathgirl

MICREN66
Posts: 7
Joined: Jun 2010

Glad to hear your last report was clean / I have faith mine will be the same. I had the biopsy done on June 30th and I'm sure if there was anything in there, the Dr would have called already wanting to schedule the next round of chemo so I'm hoping no news is good news in this case. I have an appt with my Oncologist Monday so if anything I will find out then. I hate being kept in suspense and waiting/dreading for the phone to ring. One question - how long before your hair started growing back? I have not had chemo in almost 2 months and I cannot see any evidence of mine growing. I didn't lose all of mine but it is so very thin I may as well have.

Thanks for the support.
Take care.

Micren66

rathgirl's picture
rathgirl
Posts: 147
Joined: Jun 2010

well i started losing it on my first round but i didt lose all of it. it was like prickly cause i shaved my head and after i shaved it it stopped falling out. it started growing back after the chemo worked out of my system. after the first round it took about a month to show any evidence but by the time it did start growing back i had more chemo. so it really didnt start until 3 months after it fell out.
i think it all depends on how strong the chemo was and how strong your hair folicals are.

take care
rathgirl!

MICREN66
Posts: 7
Joined: Jun 2010

Received a call from the Doctors office yesterday. The preliminary report indicates no active leukemia cells found in the bone marrow. The Doctor is waitng on the cytogenic report to confirm this and should have that report by Friday. I have an appt with the Dr on Monday, 6/12, and should find out those results as well as how the Doctor wants to proceed with treatment. To say I was relieved to hear the news is an understatement. I screamed in joy after getting off the phone with the drs office and scared both my 9 yr old daughter and the cat. My daughter was very excited after I told her what was going on - the cat not so much....lol.

As for the hair, I guess I will have to be patient and it will grow back when it is ready. Patience is not one of my best virtues, especially when it comes to my hair but in this case i have no choice. I guess GOD has a way of teaching us to be patient and this must be my lesson.....lol.

Glad things are going well for you.
Take care and talk to you soon.

Michele

rathgirl's picture
rathgirl
Posts: 147
Joined: Jun 2010

sorry i didnt get back sooner. YAY!!!! im happy for you!!! when i heard the first set of results after my first treatment i was so excited i was speechless!
ya. with cancer you have to be patient. i learned that the hard way. its all hurry up and wait with cancer. lol.
we can only get away with being bald and not get made fun of. we make bald look cool!! :)

take care!!! glad you are doing good!!!
krysten

MICREN66
Posts: 7
Joined: Jun 2010

Thanks for the words of encouragement. I am currently in the hospital getting my first round of consolidation chemo - tomorrow (7/16) will be my 2nd day of chemo - they are doing 24hrs on and 24hrs off for 5 days and then I should be able to go home. Got through the first day of chemo and did well....hope the next 2 go the same.

The cytogenic report came back that there was 4% blast remaining in my bone marrow and 1% of that showed leukemic signs I think is what the doctor said (The Doctor called me on a SAturday afternoon to give me the news even though I had an appt scheduled with him on Monday - I think the Dr gets off on giving bad news and if he can ruin your weekend is even better for him.

I have 2 more rounds after this every 4-6 weeks apart depending on how quickly my counts recover. I can only pray that I will be in complete and permanent remission following them and that I will not have to consider a BMT. I keep praying and can only hope GOD will answer my prayers.

Take care - will let you know how it goes.

Michele

rathgirl's picture
rathgirl
Posts: 147
Joined: Jun 2010

im glad you are taking the chemo well! it wont take long and it will be gone! ya, y doctor did that to me too. he told me the news on a friday and i had to go back on the following wednesday. anyway. once you are through the 2 treatments that will be it! i believe that.

im praying for you!!! take care!
krysten

karenvuong08
Posts: 3
Joined: Jul 2010

May you share with me some information. Is it the BMT have to take after the chemotherapy when the cell cancers are clear in marrow? and the more patient takes the chemotherapy is the percent of sucessful in BMT is less? for example " after 2chemo is 80% he can successful...then after 4 or 5 is the spinal cord is not enough strong to alive"

I am very happy to hear from you guys

rathgirl's picture
rathgirl
Posts: 147
Joined: Jun 2010

sorry i didnt have a transplant so i dont know how to answer your question. i recomend going to the chat every once in a while and talk to them. they can answer your questions and concerns! it is an amazing place!!

jlmacb
Posts: 3
Joined: Jul 2010

I was diagnosed with AML and admitted to hospital 11 November 2007, I had three rounds of chemo, the first round (induction) was 24/7. I did the second round as an outpatient, then back in hospital for the third. Transfusions throughout. After the third round I had a partial BMT four months later in February 2008, my sister was a perfect 10 of 10 match. I had to have a partial as the chemo caused some liver and kidney problems and they were afraid I would not withstand a complete BMT. It took longer for the transplant to fully take, but I am now completely the same DNA and blood type as my sister and my liver and kidneys are doing well.

I had the most amazing care, still do (if you can believe it, I email my principal doctor and he emails me back) and after a year I returned full time to work, I work three days in the office, two days working at home, which is ideal as I still get pretty tired, definitely have chemo brain which is getting better (well some days…LOL) and my stamina has not completely returned.

Even with a 10/10 match I have chronic GVHD, and take serious medication for it. I have a really sore mouth, skin discolouration, restless sleep (most likely form all the steroids) and like everyone else whose immune systems are being suppressed I have to be very careful around people as I can easily get colds, flu (had H1N1) et all.

It’s only been about 18 months since my transplant and my doctor feels the GVHD will eventual subside (he thought it would take 18 to 24 months) although it seems like it is increasing in intensity right now. I would love to hear from others who are experiencing GVHD and how you are coping with it. I have to say I have a great outlook, but there are days when I get pretty tired of all the meds I have to take, the side effects and the GVHD. I still get regular blood work done every month.

There are so few people to talk to about AML and BMT, it is nice to find this site. We are all amazing survivors and while, as I’m sure we all say, “I just want to get back to my life”, this is my new life and I would love to know how others are managing and re-shaping their. Thanks everyone!

MICREN66
Posts: 7
Joined: Jun 2010

Glad to hear that things are going good for you even though it appears that it is a daily struggle with the GVHD. I have one brother who has as of yesterday had bloodwork done to send to Duke Medical center to see if he is a match for me in case I decide to have a BMT or SCT done in the future. I met with a Dr down at that facility and I was not convinced that that was the best option at this time - risks appear to outweigh the benefits especially when the Dr says "if you make it through the chemo", "if the transplant takes" and "if we don't lose you to infection, complications from GVHD, etc." - all of which scared the mess out of me. I have a 9yr old daughter to consider and I feel going the chemo route is my best option at this time.

And you are right, we are all amazing survivors of this disease and I can't tell you how many times I have said that I want to get back to my life but my live now includes AML. As a result, my faith has grown considerably and I have learned that I thought was extremely important that don't hold the same position in my life anymore. I have also learned how to put myself first and to take time for myself. My family is the most important thing and the house does not have to be spotless when my daughter wants to go and do something fun. This disease makes you realize that what may have been a priority might not be so important anymore.

Good luck with everything / stay strong - a positive mental attitude goes a long way in beating this thing.

Take care.

Micren66

jlmacb
Posts: 3
Joined: Jul 2010

It is always a hard decision to make, I was told by my doctor that if I had a sibling match, I should have the stem cell transplant BMT right away. He said although I went into remission after my first round of chemo, the cancer would return at some point, six months, one year, ten years--they don't know. But when it does return it often does not respond as well to the chemo. So I took my chances with a good sibling match and although I have chronic graft vs host there are treatments for it. Many don't have chronic cases, it just shows up and then leaves and the transplant is happy and does it job. Good luck with your decission and I hope your brother is a match, or they won't do the transplant on the first round anyway, at least not where I am being treated, as non sibling matches are much more complicated.

I agree playing with your daughter sure beat housecleaning! LOL Take care..

karenvuong08
Posts: 3
Joined: Jul 2010

Please guy, can you give me your principal email? i really need information from doctor..my uncle have been in AML, but many ideas for him that he should take a BMT or continuing the chemotherapy.
Kind regard

justaharleygirl
Posts: 3
Joined: Aug 2010

Boy have you explained exactly how i am feeling in regards on how to proceed with my treatment. This is September now and i pray you are doing well. I was diagnosed with AML on July 8th , 2010 and admitted in the hospital July 12th , 2010 for induction chemo.. spent a very long month in there and had lots of complications. I go and see my doc on the 9th of September again and i just don't know if i want to proceed with a BMT or stay in remission.. The first put me in remission. I know i still will have to do the consolodation .. and is there more chemo after that? .. i am so afraid of complicaitons with the bone marrow. The doc i seen in Madison WI said that the way he looked at it was a dicey game.. like the casino he said when you pull the slot machine !.. What a thing to say .. and that echos in my brain daily.. I am so afraid and don't know what to do .. I am 45 married and just want to live..Right now being home since august 12th i still feel week and tired. I pray for all of us and the ones who have passed with this horrible disease. Any advice would be appreciated.. Hugs everyone ~!

rathgirl's picture
rathgirl
Posts: 147
Joined: Jun 2010

congrats on being in remission! i have been in remission since june 1st and i still get tired easily and sometimes weak. it is a matter of time until u are not as tired and weak. i know the effects can last for up to a year after treatment so it is still a long road even after treatment. i would do what u think is best. if u are in remission i wouldnt worry about it until (if u ever do) u have to have it done. i had more chemo after i was first told i was in remission just to be safe that we got it all. i also had one more bone marrow biopsy after i was done with my precautionary chemo treatments. i dont know about after bmt. i didnt have a bmt.
if u have any questions feel free to message me. also i recomend the chat. it is an amazing place to ask questions, complain, and even just have fun.

good luck,
rathgirl

justaharleygirl
Posts: 3
Joined: Aug 2010

Thank you for your reply ! .. I am going to the Oncologist tomorrow (THURS) and i have made the decision after researching and researching.. i am not going for the bmt .. i decided to just do consolodation therapy. I will let you know what he says.
Congrats on your remission too !! How many consolodations do you have to do ? I am wondering.. Hope your day is filled with sunshine ! Great to be on here with everyone.. you help me so much !! God Bless .... Connie .. aka justaharleygirl

rathgirl's picture
rathgirl
Posts: 147
Joined: Jun 2010

i had 3 days of 1 hour sessions for 3 months. i had a few complications but that is to be expected. i hope it wont be too intense for u. keep coming back here and keep us updated!
rathgirl.... aka krysten

MICREN66
Posts: 7
Joined: Jun 2010

Sorry it has taken me so long to post info re how I'm doing, etc....I have completed all 3 rounds of my consolidation treatment and came through them like a trooper - no nausea or vomiting. I am in remission (after the first round of consolidation therapy) and I have since returned back to work part time for now. I am going to Duke Medical Center to enroll in their clinical trial study for the Gleevec pill that apparently is having a lot of success treating AML patients. All I can do is pray that GOD will allow this pill to work and keep me in remission forever.

There were quite a few dark days during treatment and I did not think I would make it to the end without losing my mind or life but I did. I'm not sure exactly when but I feel GOD spoke to me and told me that I was going to be okay and that I was to use this experience for something. It was not explained what I was to do with it but after that I have been able to speak about having leukemia with people I have met at the Drs office, the grocery store, etc. I have also had a family member be diagnosed with a different type of cancer and I have been trying to be her biggest cheerleader by keeping her spirits up and have her fight hard against the disease instead of giving in to it.

Currently I am waiting on the results of the latest bone marrow biopsy so that we know for sure that I am still in remission. Praying for good results.

vabell52's picture
vabell52
Posts: 11
Joined: Sep 2010

I sure hope you have good news by now. I had 3 rounds of consolidation, each a 5 day stay in hospital. 8 bags of chemo given 12 hours apart. This was after put in 100% remission after 9 weeks from being diagnosed. (May 20,2010) I have finished 3 and will have the 4th and last at the end of September. From what I understand, remission depends on which chromosome is abnormal. Some respond well to chemo and staying in remission than others. A FISH test is done to determine this. My dr. explained they sorta filet the chromosome under fluoroscopy. I would think that knowing the chromosome that caused the leukemia would help in determining whether a BMT is needed.
I have aml 2 and the chromosomes 8:21. Currently there is no need for transplant for me. Thank the Lord.

As far as being tired, it comes and goes for me. Certainly while counts are low, I'm pretty useless. But please, just give into it and rest when your body tells you. And please be selfish! You must, it's your time and you need be in order to beat this beast. I told my family early on, I have always put you all first and now it's all about me, things are gonna change. They had no problem with that and I'm sure neither will yours. It's just how you must think, use all your energy for your recovery. My Dr. also puts all his leukies on Zoloft, which I'm sure helps with the mind game we're on.

Please update us when you can and I wish you a clean marrow, stay strong!
Julia -vabell52

nanstevekemp's picture
nanstevekemp
Posts: 4
Joined: Dec 2010

I am reaching that same crossroad very shortly. I have responded well to the induction phase and the first consolidation round. I am starting the 2nd round next week. I visited a very well know cancer hospital and listened to the options, which included BMT. I know it has many side effects but it also increases your chance of a cure by 30%. In my case, it would go from 40% to 70%. Don't you think it's worth the risk? How are you all doing?

Steve

vabell52's picture
vabell52
Posts: 11
Joined: Sep 2010

Hi Steve,

Haven't checked these boards in a while; I hope you have finished your treatment and all is clean! I too have AML type 2 and am still in remission, no cells found on last BMB. For now, my doc feels no BMT needed.
Let us know your "status" when you're able. Praying all is well
Peace,
Julia

honeybea
Posts: 2
Joined: Apr 2006

Hello, I pray this comment reaches you. I am a AML M2 Survivor of 4 years. I was first Dx in Dec. of 2004 I was at work, working with a fever of 102 went home was to see my dr. the next day and ended up in the ER. From there I was transported to Duke with a white count of 146,000, The drs at duke told my husband I should of died. I had no platelets and My gums were swollen, petichie all over my body. I had been back and forth to the drs. for 6 months and no one could find anything wrong until I fainted at home and ended up in the ER. I know what you are going through, I have been there had all the side effects as well as Aspergillus, and a blood clot in my lung. I hemorrage, had mouth sores, sweets syndrome nausea and vomiting. I went through Pheresis and started with Hydrea followed by 7+3 days of induction with remission in 2005. A year later the day before my daughter was to get married I had a drs. appt. and I was notified it had returned, was admitted again for treatment, with a referral to the bone marrow transplant team. Went through to transplants and pneumonia and GVH disease. I am here because the God and the team, and my family. God give us the strength to do the impossible,so he can do the possible. He is there holding are hand as we go through our trials in life. I pray for you that all is well and that God the drs., and nurses as well as your family will be the strength you need.

vabell52's picture
vabell52
Posts: 11
Joined: Sep 2010

Wow, I am amazed at your story, so many hurdles to overcome. You are one strong woman! Congrats on your success. God is good.
Julia

nanstevekemp's picture
nanstevekemp
Posts: 4
Joined: Dec 2010

I was diagnosed August 27,2010. I went through the 3-7 chemo-treatment and my first Post Remission treatment. My body has responded very well and I have had very minimal side effects, I pray it stays that way. I am 48, was very active and always try to maintain a positive attitude. My family and friends mean the world to me, and truly believe that their prayers have been heard many times by God. He already knows the path he has mapped out for all of us, and I hope everyone on this page has, or will have, a success story. I want to hear more. What am I in for?

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