My husband has CML looking for support on how to get through the hard times

mybella

My husband is 36 and was diagnosed with CML (he was in the blastic phase) in December 19, 2008 (2 days before our youngest daughter turned 1). We went to the doctor because he had a sore throat and found out his white count was 90,000. It has been a roller coaster ride ever since our family has been thru sooo much, I had a cyst removed from my brain in 2005, then my husband was in a work accident where a steel plate hit him in the face shattering his orbital socket and giving him permanent brain damage in 2006. It seems that hes in the hospital more than hes home. He just went through his 4th round of chemo and when he came home he ended up with a fever and was jaundice so I had to bring him back to the hospital. I see the changes he goes through when hes been through chemo and when hes done and my heart breaks. There are times when hes soo angry and Im the one that gets the brunt of it all. Im hoping this website will help me to find words of wisdom to help me help my husband. If you have information that could help me please let me know I feel at such a loss.

Thx

Maria

gailamason

I am an AML survivor. I want to help you if I can.
As a survivor of AML (11 years out now) I still remember the horror of my diagnosis. The awful feeling of how could this happen to my loved ones. It was not ME, but my loved ones that I most worried about. Since Leukemia is not something they can "cut out" of you, you really feel bad all over. Especially down deep in the joints. I suspect your husband feels so bad and has been through so much that it is hard for him to act as He normally would. He and YOU must be devastated. To have a young child of which He probably does not have the energy to enjoy so much right now, must really be frustating to him. And to you, my dear friend, Oh My, I am glad I am not in your shoes. You must be strong and do what ever it takes to make sure He gets all the treatments and attention He needs. I know that will be a juggling act with the young child, but YOU CAN DO IT!
You let me know what you are interested in and I would love to offer my attention to your needs. In 1998 when I was diagnosed, I had NO ONE to talk to that had been through anything like this.

mybella

gailamason said:

I am an AML survivor. I want to help you if I can.
As a survivor of AML (11 years out now) I still remember the horror of my diagnosis. The awful feeling of how could this happen to my loved ones. It was not ME, but my loved ones that I most worried about. Since Leukemia is not something they can "cut out" of you, you really feel bad all over. Especially down deep in the joints. I suspect your husband feels so bad and has been through so much that it is hard for him to act as He normally would. He and YOU must be devastated. To have a young child of which He probably does not have the energy to enjoy so much right now, must really be frustating to him. And to you, my dear friend, Oh My, I am glad I am not in your shoes. You must be strong and do what ever it takes to make sure He gets all the treatments and attention He needs. I know that will be a juggling act with the young child, but YOU CAN DO IT!
You let me know what you are interested in and I would love to offer my attention to your needs. In 1998 when I was diagnosed, I had NO ONE to talk to that had been through anything like this.

Thank you soo much for
Thank you soo much for responding back and giving me such kind words of confidence. Congrats on ur 11 yr survival! I hope I will be able to say the same for my husband some day. It has defiantly been a juggling act. My husband has actually now been in the hospital for 3 day (since being in for 5 days for chemo) with a fever that doesnt want to seem to go away and hes jaundice. They just started him on another antibiotic and its making me alittle nervous. I try to be really supportive because although I dont know what hes going through because Ive never had leukemia it has had a huge affect on me as well. He sometimes seems soo angry and short tempered with me and it hurts because I try my hardest to be there every minute I can for him. My husband is being treated as though he has AML and after his 1st treatment he wasnt able to walk the same (he now walks with a cane) is that something that is common? He also has an ommaya in his head for chemo and tends to get sick after getting chemo in there. Can you tell me what you think I can do to make this easier on him? what I could or should not say. Thank you so much for being here!

worried08

mybella said:

Thank you soo much for
Thank you soo much for responding back and giving me such kind words of confidence. Congrats on ur 11 yr survival! I hope I will be able to say the same for my husband some day. It has defiantly been a juggling act. My husband has actually now been in the hospital for 3 day (since being in for 5 days for chemo) with a fever that doesnt want to seem to go away and hes jaundice. They just started him on another antibiotic and its making me alittle nervous. I try to be really supportive because although I dont know what hes going through because Ive never had leukemia it has had a huge affect on me as well. He sometimes seems soo angry and short tempered with me and it hurts because I try my hardest to be there every minute I can for him. My husband is being treated as though he has AML and after his 1st treatment he wasnt able to walk the same (he now walks with a cane) is that something that is common? He also has an ommaya in his head for chemo and tends to get sick after getting chemo in there. Can you tell me what you think I can do to make this easier on him? what I could or should not say. Thank you so much for being here!

I know exactly what you are
I know exactly what you are going thru. My husband is 29 and last year was diagnosed with AML. He was in the hopital for one month for chemo and of course recovery from chemo. He had a very bad fever, rashes and his leg hurt so bad he couldnt hardly walk. Chemo does a number on ones body. When he was going thru all of that I often wondered if he was going to pull thru and if all of this was normal. But he will. And they do. My husband went from being horribly sick to being sent home in one day. Just have to take one day at a time, wait for blood counts to return to normal. He takes some anger out on my and can be crabby but I guess they have no one else to be themselves around. It pains me to see him like that but know things will get better. Just be there for him! That all you can do! Can I ask why he has a Ommaya reservoir?

mybella

worried08 said:

I know exactly what you are
I know exactly what you are going thru. My husband is 29 and last year was diagnosed with AML. He was in the hopital for one month for chemo and of course recovery from chemo. He had a very bad fever, rashes and his leg hurt so bad he couldnt hardly walk. Chemo does a number on ones body. When he was going thru all of that I often wondered if he was going to pull thru and if all of this was normal. But he will. And they do. My husband went from being horribly sick to being sent home in one day. Just have to take one day at a time, wait for blood counts to return to normal. He takes some anger out on my and can be crabby but I guess they have no one else to be themselves around. It pains me to see him like that but know things will get better. Just be there for him! That all you can do! Can I ask why he has a Ommaya reservoir?

Hi Worried08
I read your comment and it made me feel soo much better (sounds weird because we're not dealing with something pleasant) but I didnt feel alone you were almost taking the words right out of my mouth your husbands conditions sound just like my husband, then again because they caught my husbands leukemia so late even though he has CML they are treating him as though he has AML. The Ommaya reservoir is so that the leukemia doesnt travel to the spine or brain (from what they told us). Thank you soo much for responding back to me. Please keep intouch I wish you and your husband all the best.

Maria

worried08

mybella said:

Hi Worried08
I read your comment and it made me feel soo much better (sounds weird because we're not dealing with something pleasant) but I didnt feel alone you were almost taking the words right out of my mouth your husbands conditions sound just like my husband, then again because they caught my husbands leukemia so late even though he has CML they are treating him as though he has AML. The Ommaya reservoir is so that the leukemia doesnt travel to the spine or brain (from what they told us). Thank you soo much for responding back to me. Please keep intouch I wish you and your husband all the best.

Maria

Maria
Your welcome for responding back. I know how it feels and all I ever wanted was to talk to someone who is going thru basically the same thing. I asked about the Ommaya because they were thinking of doing that with my husband. He went into remission in August but relapsed last month in just his spinal fluid. No trace in his blood or marrow though. He is currently starting radiation on his spine and brain. Very rare for this to happen they say. But have been told by his doctors(he is seen at the University of Minnesota) that leukemia responds very well to chemo and radiation. So all we can do now is hope and pray this works.
I hope all is well in your family...your husband will be fine. Its just tough getting there. I will keep in touch...take care! If you ever want to talk you can email me at corswenson@yahoo.com

Corey

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gmg12667

Have faith
Maria, you have to have faith in each other and in God to get you through this. I'm not an overly religious person but I have found praying helps a lot! My husband has APL, a very rare form of Leukemia, and he is having a terrible time coping. He's Italian too, so I think the whole, depending on me, not being the breadwinner, etc. is very difficult for him. He lost his job because they said it would take 1 1/2 years for his treatment and his employer couldn't hold it open for that long. We're coming up on one year in May 2011.

Between feeling so crappy from the treatments (he spent 41 days in the hospital, has gone through 5 rounds of chemo with arsenic and Atra and now is on chemo pills for the next year), feeling so crappy from the pain, feeling so crappy from not being able to work, feeling so crappy about not bringing home the paycheck he once did, he's feeling like crapping all over me. To your point, and that of other posters here, we just happen to be there when they're falling apart and they are so uncomfortable with what's happening, they take it out on us. And they don't mean to, I'm sure.

I think if I had been the one diagnosed it would have been different, I think I'm stronger. I guess we don't realize how vulnerable men are sometimes, especially not only with getting this disease but also with their egos. You just have to be there for him and know that you'd put up with 100 crappy days for every good one that goes by just because he's still in your life. That's the way to look at it right now. As time goes by and as he gets better, life will get better and you'll both be back to 'normal'. I'm praying we will be back to 'normal' at some point and I'll have my wonderful, loving, funny, charming husband back too.

Best of luck and my prayers are with you.

Gina

ReubenC

gmg12667 said:

Have faith
Maria, you have to have faith in each other and in God to get you through this. I'm not an overly religious person but I have found praying helps a lot! My husband has APL, a very rare form of Leukemia, and he is having a terrible time coping. He's Italian too, so I think the whole, depending on me, not being the breadwinner, etc. is very difficult for him. He lost his job because they said it would take 1 1/2 years for his treatment and his employer couldn't hold it open for that long. We're coming up on one year in May 2011.

Between feeling so crappy from the treatments (he spent 41 days in the hospital, has gone through 5 rounds of chemo with arsenic and Atra and now is on chemo pills for the next year), feeling so crappy from the pain, feeling so crappy from not being able to work, feeling so crappy about not bringing home the paycheck he once did, he's feeling like crapping all over me. To your point, and that of other posters here, we just happen to be there when they're falling apart and they are so uncomfortable with what's happening, they take it out on us. And they don't mean to, I'm sure.

I think if I had been the one diagnosed it would have been different, I think I'm stronger. I guess we don't realize how vulnerable men are sometimes, especially not only with getting this disease but also with their egos. You just have to be there for him and know that you'd put up with 100 crappy days for every good one that goes by just because he's still in your life. That's the way to look at it right now. As time goes by and as he gets better, life will get better and you'll both be back to 'normal'. I'm praying we will be back to 'normal' at some point and I'll have my wonderful, loving, funny, charming husband back too.

Best of luck and my prayers are with you.

Gina

I feel for you
You should let your husband know there are other APL survivors on this board or on the LLS.org board too. Though it is the rarest form of Leukemia out there, it has become one of the most curable type.

I know I can't speak for everyone else out there, even knowing that my chances of a relapse go down after each day I put behind me, I will always live with the fact that there is that possibility - as remotely as it may be, that I could relapse. On top of that, I don't know how much of my future I traded in for a cure for today, which also carries it's own psychological trauma.

I strive to reclaim the person I was, but there's no denying the things this disease has done - I only hope that some day I can reach the person I've always wanted to be despite the roadblocks that have been laid before me. That is the goal after all, dx or not.

OTIS2009

gmg12667 said:

Have faith
Maria, you have to have faith in each other and in God to get you through this. I'm not an overly religious person but I have found praying helps a lot! My husband has APL, a very rare form of Leukemia, and he is having a terrible time coping. He's Italian too, so I think the whole, depending on me, not being the breadwinner, etc. is very difficult for him. He lost his job because they said it would take 1 1/2 years for his treatment and his employer couldn't hold it open for that long. We're coming up on one year in May 2011.

Between feeling so crappy from the treatments (he spent 41 days in the hospital, has gone through 5 rounds of chemo with arsenic and Atra and now is on chemo pills for the next year), feeling so crappy from the pain, feeling so crappy from not being able to work, feeling so crappy about not bringing home the paycheck he once did, he's feeling like crapping all over me. To your point, and that of other posters here, we just happen to be there when they're falling apart and they are so uncomfortable with what's happening, they take it out on us. And they don't mean to, I'm sure.

I think if I had been the one diagnosed it would have been different, I think I'm stronger. I guess we don't realize how vulnerable men are sometimes, especially not only with getting this disease but also with their egos. You just have to be there for him and know that you'd put up with 100 crappy days for every good one that goes by just because he's still in your life. That's the way to look at it right now. As time goes by and as he gets better, life will get better and you'll both be back to 'normal'. I'm praying we will be back to 'normal' at some point and I'll have my wonderful, loving, funny, charming husband back too.

Best of luck and my prayers are with you.

Gina

Nothing is Impossible
Gina,
I just became a member, I was reading your post. My husband was diagnosed with AML but the subtype called APL just like your husband.
It was a rough road, in and out of the hospital. My husband went through hell and back. He too is having a hard time with not being the person he use to be. He worked a corporate job was the major bread winner also, Now he is disabled due to other complications caused by cancer. Our family and friends prayed so much I think god was sick of hearing from us. Things are way better now, he will be in
a molecular remission for 2 years come April 2011. He also does the Atra treatment for 2 weeks every three months. He is on his 2nd to last treatment, but this drug has killer side affects. Terrible headaches which in turn make him sick with vomiting. It just plain sucks.
I hope your husband is doing well if he to is still in treatment. Hope is a good thing.

prayers to you and your husband.


Tracy