Please don't get me wrong, I know he is going through so much also...I am trying my best to be strong and supportive.

Hi Lauren,
I was a caregiver for my mum for a number of years, so understand a bit of what you're feeling. It is hard on you dealing with a number of major things going on at the same time.

Emma asked a similar question a couple of threads ago - so maybe have a read through of that and send a message to Emma.
http://www.dailystrength.org/c/Chronic_Myelogenous_Leukemia_CML/forum/17487869-do-my-partner

Thanks. I have read through that thread. It was not really what I was lookibg for as the conversation went on a different tangent. There seems to be alot ofssupport for those with illneeses but none for families who are also dealingwith major changes

Hi Lauren,
I'm probably not a lot of help as I live in Australia. We have the Leukemia Foundation here which also has an area for carers.
My only suggestions I can give you are to see if you have a similar organisation in your area. And there is also the Carers forum on the LLS site which I mentioned to Emma. Plus there may be social workers / counsellers available to you where your husband is being treated and they may know of support groups in your area.
There are also a couple of other drugs your husband might be able to switch to, which may give him less side effects.

This forum isn't frequented by a lot of people.
Do you have other family members that you can talk with?

Hi Lauren,

This is my first time posting here - I just wanted to say you're not alone. My fiance who has been my partner for the better part of 8 years was diagnosed with CML in March 2013. He is 34 and I am 28.

It has been a *really* hard year, but things are so much better now than they were. I feel like we didn't turn a corner of some sort until October/November, really. There have been all sorts of secondary issues - bacterial food poisoning that landed him in the hospital for 5 days, mysterious symptoms that may or may not be side effects from Sprycel - either way he has to go through all sorts of tests and doctors.

It's been exhausting. Even when the visits to his oncologist who is 2 hours away became more infrequent, it remained emotionally draining. It's sometimes harder to be the caretaker. I don't know what your husband is like personality-wise, but mine is spectacularly difficult in times of stress - which this whole year has been!

Anyway, I'm rambling. I know *exactly* how you feel about not handling it as well as you want to be. I felt like for the most part I didn't either. And I also hear you on catching a break - it's been a long time coming for us.

I'd love to hear more about your situation, what makes you feel like you're not handling it well, and what you think you *are* doing well.

Holy smokes, it felt really good to write a bit about it! That's a first!

Take care :)

It is comforting to know that someone is feeling like I do. Just to let you know, my suspicions were correct and he has had a bit of a relapse.

Laurenh110
I have had CML for some time
First off if he is having a lot of problems he may need to try a different brand and I would look at seeing a different doctor
Mine are constantly asking me if I want to try something else or want a medication to help with that problem or this problem
I would consider seeing an oncologist and get a new GP mine found mine within hours and had me with a oncologist within 3 days
Something else is for him to try different times and foods to take the med with. I found doing mine at noon to 5 in the afternoon with a package of peanut butter crackers worked best
Now having said that ,it is not easy adjusting to a loved one that is suddenly hit with this
My wife of now 46 years this month still has days that are hard on her
She will want to go somewhere and I may not feel like it or do not feel like driving.
She may cook a nice meal and I eat very little
As time goes on he will most likely start coping better but it does take time
Keep him active as possible
Glad to visit with you anytime and answer any questions I can
So you are not alone

i was told i had CML over the phone. i was all alone and absolutley devestated.
worse than that, as soon as the oncologist confimed my illness the very first thing my wife of 10 looked at me and said "we need to get divorced so that your medical bills dont bankrupt me and Jennifer,(our 5 year old daughter and the only reason im still alive).
Now, there is alot of sense to that, i mean it was a good idea to protect or finances. at the time we owned two houses and had considerable savings. I was shoked to lean what our co-pays were. My oncologist did not like my wife much because the first question out her mouth when he reccomended a test were 1)how much is it going to cost, and 2) does he really need that test.
it was a devestating time. i had no family or frieds that could discuss this with me because they all thought i was going to die and i think they didnt want to deal with it. i dont know.
believe it or not the above paragraphs arent even the worst. My wife did leave me, and she was able to convince the court that in my "condition" i would not be able to care for my daughter.
i was about suicidal. not because of a poor me thing, nor was i seaking attention, it was just the only practical way i could see to suport my wife and daughter. My cost just for the gleevec was $500 a month and i had damn good insureance!
no, the hardest thing to deal with was the anger i felt from people when i didnt die. it may have been my imaginationi, but it seemed everyone told me how good i looked and they coldnt believe i was sick. if i couldnt do something because of my fatigue or nasua(sp), they called me lazy and told me i was milking my illness way too much! I had to "invent" other illnesses because nobody believed i was sick.
ive been switched to sprycel and the oncologist says im headed for remission. thats great news, i know, but it comes with a downside. many of my problems remain. the fatigue, the lack of energy, the loneliness all weigh heaveily on me. the worst is the anxiety and the depression. My mind has about 10,000 things it wants to do, but my body just wont co-operate! worst of all though is that my oncologist tells me that once my body adjust to the Sprycel the lukemia will come back and kill me. so, i get to put up with alll the sprycel side effects, and there are many, and then i get to die from a horrible illness afterwards.
im only here for my daugter, she is 12. I really hope she dont have to watch me die from this horrible illness. in fact, i probably wont let her. I know many people have sever thoughts about suicied. ive had seveal people say to me i should be happy to be alive.. I often ask myself if they would be able to live with the pain and sickness i have to deal with every day. life is a wonderful thing, but if you cant live then whats the use?
i pray for all who have this or any other illness. i hope there outcome is better than mine and i TRULY hope they have friends and family the at least try to imagine what they are going through.
i dont want to be coddled or taken care of, but i wish people and at least see that im just not the persone i use to be. before i got this tillnes, i was working as a teamster making $27 dollars an hour and all the overtime i wanted. now i cant work at all cuase i dont know when im going to be sick. Fred meyer, (kroger and smiths in other states), dropped me like a hot potato. did you know that lukemia is not a qualifying disease to receive SSDA! how funny.
well i lost my family, my dog died, and i lost both our houses. sounds like a very bad country western song.
i admire those of you how can keep a positive attitude. mines in the toilet........
thanks for reading
jim











































































4

Hi Jim,

Can't believe your doc said that about Sprycle and long term prognosis, plus getting the diagnosis over the phone, unbelievable.
For a start Sprycel hasn't been around that long for the doctor to make a claim that your body will get used to it and you'll relapse. The current reasons for people not staying on Spyrcel are the side effects or Sprycel not working due to the mutation T315I. Mutations will usually show themselves within the first two years so if you're responding well to Sprycel, this doesn't appear to be an issue for you. Plus Tasigna is available for you to switch to and there are other drugs/treatments in the pipeline.
As to how people react to your diagnosis and side effects, this has happened to most of us. There is a lack of understanding for most people that CML is not a death sentence anymore (current thinking is most of us will die with CML and not because of it). I remember when I was diagnosed, I spun with the thought of dying for at least six months. I didn't have the additional things that you've been through, so it was easier for me to get to a reasonably good place in my head.
People still scratch their heads when they see me, wondering why I haven't died, lost a heap of weight, lost my hair etc, all the things that happen with that scary word "cancer". Explaining side effects to them sounds like I'm whinging, so I only talk about that stuff to my closest friends and people on CML forums.

Can I suggest you visit http://community.lls.org/community/bloodcancer/livingwith/cml/content?filterID=content~objecttype~objecttype[thread]
It is a great forum that has a large community on it - the Daily Strenght forum is a lot quieter. It does help to be able to talk to others about the issues associated with CML. I felt less alone when I found the LLS forum.

A little bit more clarification on drug resistance - there are a small number of people who's CML has become resistant to Gleevec and they have moved to another TKI. But there are also people who have been on Gleevec since its trial and are still doing well 14 or 15 years later. There may be a chance that some people will become resistant to Sprycel as well; as time goes by. It all comes down to the individucal. But remember there are currently a couple more TKIs available, plus new treatments are being worked on all the time.

I lost my loving husband in an accident after life was so perfect in 7years of marriage and a kid age 5years. After almost one year of mourning I came alive with a new course and a nhew job. Decided to live life happy and content becoz life is too short for all complains.
After 2.5years i met this man but he had CML, i cried but I knew one thing he gave me comfort that no one else had becoz he had pain and I had pain. I studied about CML its dosent look bad as it sounds :) so we are spending each day as it comes with a smile and probably happy memories to my kid when she grows up.
In some conservative countries marriage is felt necessary for a relation to exist between a man and woman but i feel happiness is waht matters. I pray everyday for my man with CML with good health. My support has brought a lot of positive effects in his mind and body. Wish some magic happens and there is permannrt cure for this :)

Hi, I thought I would repost to update. Turns out my husband has the genetic mutation for both CML and AML and also has developed spinal tumours which have compressed his spinal cord leaving him paralysed. Good news is they have got the AML in remission and the tumours are reduced by 95% but it is possible that he will remain paralysed. The hospital which he has been in for going on 9 weeks now is 2 hours from where we live.

Jim, I am so sorry to hear that your wife left you and you feel alone. this is nothing in comparison but I feel very alone sometimes too. I am also sorry that you did not meet a woman who was strong enough to be able to deal with what you are going through as I am not leaving my husband for anything!! I need him and he needs me and we need to fight together to over come this battle.

I am thankful though that I live in Australia and our health system is very different here. My husband is from the USA originally and is now an Aussie citizen. We have a health care system supportive of cancer patients and his medication only costs us $40 for 3 months also there has been no charge for his hospital treatments or anything. I don't want to sound like I am bragging. MOre than anything I am thankful and appreciative of our governments health care system when hearing of others around the world and their struggles financially and how the disease totally then consumes life. It is devastating.

I do believe that things happen for a reason and I think that we got our dog not long before he was diagnosed to help me cope as he is a gentle soul. This has made me stronger and tougher and more proactive and has brought me closer with people I had lost touch with who are supportive and have been able to identify those people who are not true friends and some family too who are not the best people to have around me. I am also more thankful for life and the preciousness of it and the strength contained within my husband to fight and fight for me.

I have also started praying everyday (i am not religious), sometimes 2 or 3 times a day to the universe and those within it to send us strength, hope, compassion, health and courage. More specifically, in addition, I ask for my husbands health, strength and more happy years together.

Hi Lauren,
Didn'r realise you were from Aus as well. :-)
Pop onto
http://talkbloodcancer.com/node/2?option=com_fireboard&Itemid=2&func=view&id=8098&catid=7&limit=6&limitstart=6
Under the CML section you'll see they have get togethers every now and then depending on the state you are in. CMLers and their partners can catch up with others for afternoon tea. I'm on that site as well.
I'm glad the AML is under control Sending good wishes your way that your hubby gets movement back.