AML Leukemia

savanna said:

Learning Day to Day

Hi All

My Mum was diagnosed 3 weeks ago and went straight into intensive Chemo.  She has neutropenia so is in a solitary room.  She has finished her week of chemo and now we wait out the 3 weeks following which I believe are the most difficult?

 

She has had ulcers in her mouth, a really bad throat, pains in her chest and now suspected gall bladder problems.  Through all of this I feel we fumble along as we are not sure what each of these complications means and the medical staff do not give you a basic understanding...  maybe this is all normal, but we may be experiencing fear and apprehension needlessly.

 

My Mum is 71 and does not have the option of a bone marrow transplant.  Initially she was given 3-6 months to live but offered chemo should she wish to try for remission.

 

I guess I want someone who can just be straight up with me and anyone who has been over 70 who has met this challenge without the option of a BMT and if chemo, blood transfusions and platelets were enough to get them into remission?

 

Each day we continue blindly...

 

Thank you.

 

I am with you savanna my father was just diagnosed 1 month ago with AML he was admitted to the hospital ASAP and they started doing an aggressive chemo right away.  He is 70 so a BMT is not an option.  He is receiving treatment at penn medicine in philadelphia.  no blasts in the first bone marrow test After the treatment He does have pneumonia and heart racing.  I am unsure if all of this is normal.  he is very weak . i am scared and the nurses are kind but not full of information

maria21grnfld said:

aml - sick w flu

Hi, my name is Maria.  I was diagnosed with AML in Aprill 2011 and had transplant in Aug 2011.  It sounds like you had a rough time.  I cannot say it was fun. Chemo sucks. However, I made it thru that and the 100 days.  I can't believe I was actually able to come back to work after 8 mos.  I have since developed some mild GVHD symptoms, i.e. dry eyes, skin rashes.  However, since October I got some flu virus and was back in the hospital for three months.  Recently, I got another flu (which I had the shot for) and was hospitalized again.  I am on sick leave now and hopefully, will be able to return to work AGAIN in a couple weeks.  I work in health care and my doctor says I should consider early retirement or disability because of the exposure I get.  I have a lot of stuff to think about.  All these meds I am on (hopefully) temporarilly, are effecting my vision and brain (forgive my rattling).  I don't know if they consider me in remission.  All I know is that after 5 yrs and clean biopsy, the likelyhood of the disease returning is much less.  We have to stay positive and embrace the time that we feel healthy.  I have all of you in my thoughts and prayers.

 

The low blood counts after chemo are what I blame for all the complications I have gotten during the last 4 months of AMl chemo.  Luckily I do not work outside the home so have avoided contact with the public, even grandkids, etc.  I am hoping that this isolation is worth it as I just have 2 months of consolidation to go and then I think I am done as I am still in remission.  I live about 150 miles from the hospital and so stay there during low blood count and just return home during the "rise"

savanna said:

Learning Day to Day

Hi All

My Mum was diagnosed 3 weeks ago and went straight into intensive Chemo.  She has neutropenia so is in a solitary room.  She has finished her week of chemo and now we wait out the 3 weeks following which I believe are the most difficult?

 

She has had ulcers in her mouth, a really bad throat, pains in her chest and now suspected gall bladder problems.  Through all of this I feel we fumble along as we are not sure what each of these complications means and the medical staff do not give you a basic understanding...  maybe this is all normal, but we may be experiencing fear and apprehension needlessly.

 

My Mum is 71 and does not have the option of a bone marrow transplant.  Initially she was given 3-6 months to live but offered chemo should she wish to try for remission.

 

I guess I want someone who can just be straight up with me and anyone who has been over 70 who has met this challenge without the option of a BMT and if chemo, blood transfusions and platelets were enough to get them into remission?

 

Each day we continue blindly...

 

Thank you.

 

I was diagnosed with AML Jan 2013.  I am going thru what your mum is and have suffered tru most of what you mentioned.  Most of the things are just routine and expected with the chemo.  I have had no counts, low counts, neutropenia, high fever, even sudden allergy (to shell fish)  resulting in antaflatic shock and barely made it.  The support staff (drs and nurses) are use to this and sometimes don't realize how scarry it is for us patients and their caregivers (you,  my husband etc.)  I don't know how many times I thought "this is IT".  I am now on my third consolidation chemo.  I seem to get weaker each time, but now am confident I'm going to make it.  Some of these symptoms or side effects really blow me away though.   Write back on this collum.

moving_on said:

When chemo fails

Hi,

I think your father must find something to believe in, something which will make him want to go on, a strong reason to live, something in the future (could be an event he wants to attend, children, grandchildren to live for).

I have acute myeloid leukemia, I was diagnosed October 2012, when I was 68 years old and I had had the disease for helf a year prior, at least. I was not a candidate for extreme chemo...my age, my cytogenetics, poor chances during treatment, and likely return of the disease within a short while. I was given a 'lesser' chemo out patient treatment which helped for a while but is no longer useful. The hematologists give me no encouragement in regard to this disease, forget their predictions. 

I am putting my hope in my attitude and the changes I have made in my day to day life since diagnosis. I have 'pulled out all the stops'!

I eat healthy foods, lots of greens, brown rice...kind of a macrobiotic diet with just a bit of fish. I read positive books by Dr. Bernie Siegel and others, do positive affirmations on a tape by Louise Hay which a friend loaned me, have also learned auto hypnotism from an MD who specializes in that. I believe all this has kept me feeling well, not a sick day yet. Exercice is important to me...walk at least 1/2 hour a day and get 2 hours of fresh air, sleep with heat off windows open, started into meditation several weeks ago with Oprah and Deepak Chopra free 21 day meditation challenge. You can find info on any of this online.

My last bone marrow extraction showed cancer worse but I feel better all the time! I could only walk up 4 steps when diagnosed, now up 16 without shortness of breath. I have put my faith in my mind as the best fighter of this disease. I wil enjoy every day as long as I can. I feel peaceful regardless of the outcome.

Only your father can do it but hopefully he will be open to suggestions from you which may motivate him to live.

All the very best to you

 

Has your doctor talked to you about clinical trials with killer cells?  The University of MN has a trial on these that are showing good results.

Lolly29 said:

My brother
My brother was diagnosed with AML on March 28, 2011 . His first round of chemo brought him close BUT not in remission. He is undergoing stronger chemo now. Does he have a shot at remission this time around? He had so many side effects last time...i shudder to think what this might bring ( almost operated on bowel, fungal infection, hallucinations from anti-fungal medicine, etc.) Are there people out there who went in to remission the 2nd time around? He was given the news that there is a "donor" for bone marrow with 10/10 markers.

I was diagnosed with AML in February 2012, I was told three different times I wouldnt make it. After five rounds of induction chemo and two stem cell transplants I've been in remission for fifteen months. I always thank God, the medical staff and all my supporters.  And my will to live.

rita54636 said:

Hello i just read your message to Bobby. My name is Rita and i just found out on Christmas that i had AML. I have M2 i really have no one to talk to and have been looking for people to talk to and help me through the tough times that i am going through. I would really like to hear from you. Thank you

Hi Rita,  I had AML and am now in remission since2013. Everyday can be challenging but please know you do have a support network here. I have an adult child and that's all to my family but I have met some really great friends online and learned a lot from communities such as this one. Let me know if you need an ear or a shoulder  and hugs to you. This too,  will pass. 

Crystollina said:

Told me the same thing
I am a APL survior. I had a bone marrow transplant from an unknown donor when I was 17yrs old may 31st 2002... One of my many hematology/oncology doctors told me that they fried my ovaries so he doubts I can have any children of my own... Was horrible... I just wanted to cry... I had full body radiation and chemo... I'm not married but engaged and its hard for me to talk about it with my fiance because its to hurtful to talk about... I'm not sure if I can and my doctors aren't either... I guess I just have to pray and wait it out... I'm 25 yrs old now... I just pray that the lord gives me Miracle babies as he did for you! :'o(

Hi Crystollina, are there any news about you? Were you able to become pregnant? I have the same problem. And at the same time there is another problem - the fear of a relapse during the pregnancy. I can't imagine my life without children. I feel completely healthy and it is very difficult to know that possibly I will never become a mother.