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Husband has AML refusing treatment

Dee71159
Posts: 9
Joined: Nov 2012

I am at loss! My husband was diagnosed one year ago with AML. He did the induction and 2 other chemo treatments. Once he found out that he was still NOT in remission he said "i am done with this rodeo." He would rather enjoy whatever time he had left. The Dr.'s had told me that he had to make his decisons, not me. I was ok with that and I stand by him in his decision, as watching him deteriorate on the chemo was AWFUL! My husband is a strong Man's man. Once he came home, he told me that he needed to "work this cancer out of his body." He landscaped our yard like he was an 18 year old haha! I am so proud of him, but I am constantly worried about him. He is the love of my life. I asked the Dr.'s what to expect. They said that they could not give me any answers because he quit in the middle of his treatment. He has bad days, but nothing like when he was doing the chemo treatments. Somedays I look at him and think that there is no way he still has leukemia. I just have no idea what to expect. This is the hardest thing I have ever had to watch anyone go through. If you know anything I need to hear or do...please tell me.
thanks!!

heidijena
Posts: 2
Joined: Sep 2008

Dee,
As a 5th year survivor of AML and the treatment that accompanies, both of you have my prayers. I always felt the people around me are going through a harder time than me. I did not have adverse affects from chemo or radiation so I am unable to relate to the disappointment of no remission. I do feel a horrible sensation of fear and angst thinking about a relapse. Though my experience was smooth, I don't want to go back to the hospital and do it again. And times, I wonder if I would make the same decision as your husband. Feeling crummy because of something that should be saving your life, feels somewhat counter-productive. His length of life is not necessarily extended by treatment, as a matter of fact, most treatment brings secondary cancers. For him to choose a better quality of life in the now is a reasonable decision. It's going to be a matter of how he wants your time with him to be...
in and out of treatment and hospitals for sure, or, back to before the diagnosis and not knowing what's coming your way. Kind of like returning to less stressful times I guess. I would rather live as fully as I can than thinly for a longer time...
I'm not sure how realistic that sounds, but those are the thoughts I have about my own situation. Good luck with everything!!

Heidi

TanyaC97
Posts: 20
Joined: Aug 2011

I am sure it is hard to watch him struggle at times. But a positive attitude does wonders. I am not yet at two years of being an AML survivor. I will say that my joints hurt almost as bad now as when I was going through chemo. It effects my life daily and I hate it.

So for him to want to be as pain free as possible and enjoy life is understandable. Cheerish each day and laugh often.

lostmysweetheart
Posts: 2
Joined: Jan 2013

I lost my husband to AML in November, however he had a chromosome called FLT 3, that made his acute myeloid leukemia more aggressive, we had a 17 month battle that was truly a roller coaster ride, what I want you to know is we were told from the beginning AML is very treatable it was the FLT 3 that made our journey such a heartache, if your husband does not have FLT 3, after my journey and this is only my opinion, encourage him to fight, fight fight, don't give up, get the treatment, God will see you through, it might not be easy, but it will be worth his life in the end.

Dee71159
Posts: 9
Joined: Nov 2012

Since my husband quit the treatment after he had induction and the following month of treatment, we don't know and the Dr,'s cannot tell us what his prognosis is. I watch him deteriorate and I am not sure what to expect or what I should do. I would love to hear from someone who has experienced the same sort of situation. There has got to be someone out there that can tell me what to expect or what I could do.

Jlamomof2
Posts: 13
Joined: May 2013

And just a side note...from the dates of your posts....it looks as if he is for now doing as well refusing treatment as we are having DONE the treatment.  So try to stay positive!

Jlamomof2
Posts: 13
Joined: May 2013

My experience with AML is a little different,  but one thing I have learned that may be helpful, and which the Drs. do not share with you...his diet can make a big difference.  There is a book called the Anti-Cancer Diet by  David Servan-Schreiber, MD that you may want to look into.    The main premises is that sugars, white flours/pastas, and processed foods feed cancer, and eating healthy (lots of veggies, whole grains, some spices -turmeric and ginger among them) help fight it.   I was skeptical at first, but have become a believer and now it is just a struggle to try to change our diets.  You can order it from Amazon if you are interested.

Dee71159
Posts: 9
Joined: Nov 2012

It's been 17 months since he was diagnosed. He is getting weaker, losing more weight, sleeping alot more and now short on breath from even walking up our stairs. I have

finally talked him into going in to a Dr. to see what is going on. I am still hopeful. He said "next week" he will go to a Dr.

Jlamomof2
Posts: 13
Joined: May 2013

Best wishes!  If you need to chat you can email me at jlamomof2@yahoo.com

My hubby has been inremission 6 mos.  he has another blood test in a week....I always get nervous the week (or 2) before that....I notice every headache and tired spell.  It's emotional for us too!

Dee71159
Posts: 9
Joined: Nov 2012

Finally talked my husband to going to the hospital. Our twins graduated this past Wednesday. I knew my hubby was struggling. He insisted on going to the commencement and was so out of breath, it about broke my heart! We had a big party planned for tonight and he said I am NOT going to ruin their big day. I made him go to the hospital last night for some pain meds. They told him he was 3 bags low on blood and 2 bags of platelets. They told me to go home and pick him up in the morning. When I got back this morning, everything had changed. They couldn't give platelets as he has too many antibodies in his blood. So, they sent us home with HOSPICE. I am so sad and do not really know what to expect. I am still hoping for a miracle!

Jlamomof2
Posts: 13
Joined: May 2013

I am SO sorry!  That does not sound good at all.  My only advice is to try and enjoy each moment while you hope that the moments turn into days, weeks, etc.  I have found more peace when I try not to worry as much about the future, but to enjoy him here and now.  I know that is so very hard with so much worry on your mind!

ttemple5
Posts: 13
Joined: Jun 2013

Phoenixtears.ca    cureyourowncancer.org      these both have information about a treatement that is working. Maybe your husband will try an alternitive treatement. If you do the research on Cannabis and our endocannabinoid system, you will see that there is scientific proof to go with this claim that "Cannabis Cures Cancer". Good luck to you.

bharti
Posts: 1
Joined: Apr 2014

Hello,

My mom is 48 and with AML. Has undergone 7 chemo sessions and Dr.s say that her body cannot stand anymore of that. She is at home right now and we take her for transfusions. She is deifntaley getting worse and eating very less. She is just around 63 pounds and very weak.

Would you suggest pheonixtears for her or something else? I am also worried if it is going to be too strong for her? What are the risks and the side effects involved. 

Thank you very much for the help.

Dee71159
Posts: 9
Joined: Nov 2012

My husband was sent home from the hospital with hospice a few weeks ago. He didn't want to do another round of chemo. On Father's Day evening, he knew he was close to knocking on heaven's door, and said he wanted to try treatment again. I am so glad! His platelets were down to 10,000 when he went back to the hospital. Tomorrow he starts induction again. I am still hoping for a full recovery!!

susancm's picture
susancm
Posts: 3
Joined: Aug 2013

I have to say that after all the years of helping my mom through blast crisis CML, I really wish palliative care doctors would get brought into the conversation a lot sooner than after all treatment fails or people seem near death, because they can make getting through things so much easier. They have made a world of difference with pain management and mobility issues when my mom feels week and dizzy. I didn't realize just how many symptoms could be alleviated with some home oxygen therapy and a walker! My mom is able to get a bit of exercise walking with her new rollator walker, without fear of losing her balance or getting too short of breath. Not totally hip for a 48 year old, and I'm sure "Manly husband" might feel a bit odd about it, but I can say it really improves independence for my mom and she loves it now. She also has a home pca for pain, and sleeps so much better at night with that and the oxygen. It's given her new life in a way that treatments can't do for a while (since it takes so long to work and then have normal blood cells recover). Hospice may not be called for just yet, but I think it's worthwhile to talk to palliative care docs whose job is to help with symptoms. They are amazing! and sometimes downright ingenious (my mom's has a handout sheet for dealing with constipation that is seriously the best thing ever). 

Best of luck to you and your husband!

 

nempark
Posts: 574
Joined: Apr 2010

Oh! Dee, I hope everything works out for your husband.  I just went through one full year of torture with my daughter.  I pray that this works out for you and for him.  Keep strong and take care of yourself also.  Please continue to let us know how you are doing.  Thinking of you and keeping you in our prayers.  

Dee71159
Posts: 9
Joined: Nov 2012

My hubby will be staying at the hospital for a month for induction. I am really hoping he doesn't get at sick as he did when he did this 18 months ago. This is a sad time and a really happy time for our family. Our twins just graduated from H.S. and are going to be heading off to the dorm in early August. How is your daughter doing? I hope all is well with you and yours!

nempark
Posts: 574
Joined: Apr 2010

My Dear Dee:  Thank you for asking about my daughter.  I did not want to worry you that is why I did not mention anything to you specifically.  My beautiful daughter did not make it. But as you are aware, every case is different.  What ever the situation is Dee, you and your family will get through it.  Life is tears and laughter, fortunately we have more laughter than tears.  Please keep in touch. If you need to talk let me know and I will send you my number in a private message.

Dee71159
Posts: 9
Joined: Nov 2012

I am so soooo very sorry for your loss of your daughter! Leukemia is one awful son-of-a-gun to have to watch someone you love go through! I am trying to stay hopeful. My husband's platelets were down to 1000 today and he is struggling so hard to hang on. He was so jaundice and weak, my heart is about breaking. His nurses are so wonderful and treat him so well. I went to church tonight and went up for prayer for him. I really hope that God heals him totally. 

Dee71159
Posts: 9
Joined: Nov 2012

My email is dee71159@hotmail.com   Things happened so fast today. I woke up married and so hopeful for his healing and I just got home from saying goodbye to the love of my life. I hate hate hate leukemia!!! If you wouldn't mind chatting with me, I would really appreciate talking with you.

Thank you!

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