Hello

[Guest guest]

Hello Eva,

I was diagnosed with cml this year the 9th of january. Took

hydrea for one month and then started on glivec on february. The symptoms I had

are pretty much similar to the ones you have now and I think everybody does to

some extent at the beginning with glivec. The meds for bone pain that I use is

Ibuprofen, never tylenol because it makes more work for my liver. Also taking a

bath with hot water helps ( told me that, I tried and it worked! ) For

muscle pain I used a muscle rub. Remember that rest is the best med, so do it as

much as you can.

You should keep writing if something bothers you, this is an excellent group

and we are here to help. Have a nice weekend.

Ed

Eva <evaob365@...> wrote:

Hi Everyone , It is day 3 on Gleevec and since Thursday afternoon ,

not even 24 hours after starting my Gleevec I have unbelievable muscle spasms in

my left shoulder blade up into my neck and aprox where my spleen is . I have

been put on Tylenol 3 and told it is just a side effect. I missed work on Friday

and there is no sign of this letting up . I am hoping for a miracle by Monday

morning because I cannot afford any more time off work. I just started my job 3

days before dx, I am afraid they are going to fire me for too much time off. If

any one has experienced the same thing and can offer any suggestions no matter

how wild I am willing to try just about anything to stop the spasms and pain

before Monday. Thanks take care ; Eva

From: Terry Dailey

Sent: Saturday, April 05, 2008 1:01 PM

Subject: Re: [ ] Coping when relationships go wrong

I am so sorry for your son. I myself went through a similar situation when I

was first dxed in April of 04.

Long story short my wife left me shortly afterwards and I was very

devastated. In all honesty I will never be the same again. In fact I am now

in the process of getting divorced again, but this is by my choice and

another story.

I can tell you from experience how things may go with your son. First

thing....Be very leery and steer him clear from meeting anyone off the

internet. I had a few women that wanted to date me because they knew I get

monthly pain meds, been taken for over a grand in cash. This may not happen

to him once he decides to try and date again but just keep an eye out for

him. He will not see it, or will be in denial.

It will take him a while to get over this, but he will. Now I only have CML

so my condition does not sound as severe as your son's but he very well may

pull himself out of it. One thing he may do is kinda lose his judgement in

regards toward what sort of woman he will date. I am not sure of his

diagnoses, or the types of treatments he is receiving, so I really cannot

say in all honesty how long he will be down. In my case it was around 6

months, and then I put up personal ads. I tried different approaches as far

as when I would tell someone about my disease. Some I would tell right away,

and others I would wait to see if things turned into more than a couple of

dates. I have found it really did not make a difference in the long run.

I can very much relate to the sort of pain he is feeling right now. What

makes it worse I think is the fact that his fiancee at first was promising

him the world and then she dumps him, all the while he is asking her if she

is okay with everything, and I am sure she told him she was. It makes a

person feel broken in my opinion. In fact it does actually break you. So be

supportive of him dating but do not push things, he will have to do this

when he is ready. As I said before after a few months he may lose it a bit

in his standards, won't look for obvious warning signs. An example, I

continued to pursue a relationship with a woman despite the fact I knew in

she had spent 3 months in jail for selling drugs, was abusing her meds(She

had Crones Disease), and let's just leave it at she had allot of other

things in her past and present behavior that would have told a normal

thinking man DANGER, but I denied it all and things turned out bad.

I wish I could say everything will be okay but honestly no one can know what

is going to happen. With his age I am hoping he will bounce back and

honestly think he will. If his treatments have caused him to lose his hair,

then once it grows back that will hopefully help his self esteem a bit. He

very well may not find the " right " woman, but then again fate has a funny

way of doing things, so he could just as easy find someone very quickly. I

haven't personally found the right person, and at this point in my life I am

tired of looking.( I am 41) I have basically consigned myself to the fact

that I do not need someone in my life to be happy, and may never find any

sort of real love again. It makes it a bit easy for me because I was blessed

enough to have my son Nick. He is 14 and I can concentrate on raising him.

I honestly hurt for your son, I know how he is feeling right now. I wish

there was an easy answer. Everything effects everyone differently. He may

start spending allot more time on the net. I know this may sound silly but

what has gotten me through a very rough period was playing online PC games.

Any sort of human contact is good for him right now even if it is just

playing a game.

Has he withdrawn allot? I will do what I can or talk with you more as things

progress if you need me. There is a good chance he will have a another love

in his life, but as with everything nothing is certain. Please take care,

just be there for him when he wants to talk, but don't push him if he has

sort of become withdrawn. I am not a doctor or anything but perhaps short

term therapy might help? Anyway if there is anything I can so let me know. I

have all the hope in the world for your son to bounce back and find himself

a woman that is worthy of his love.

Terry

41 years old

Dxed April 04

On Sat, Apr 5, 2008 at 9:28 AM, <Sionito@...> wrote:

> Wow.? That is a tough blow to such a young life.

>

> ?

>

> There is always hope.? It may seem bleak, but you just never know what may

> happen.

>

> ?

>

> Your son and his ex are young, dispite disease, and you never know how

> things will end up.? Majo illnesses cause everyone to rethink their

> situations.? She may not have felt she could do this before, but now as

> things are more seriously moving forward (marriage) she may have really done

> some hard thinking and changed her mind.? No telling why, but people are

> nervous about forever even without the?burdens of disease.

>

> ?

>

> If all sounds fresh, so perhaps in time, your son will be more active and

> more open to the idea of meeting new people.? Seven years is a long time,

> but he has lots of days and years ahead for more adventures!? Perhaps he

> will want to just take some time to adjust to the new reality and then move

> forward.? It sound like a very emotional and stressful couple of years.? A

> vacation may be in order!!!

>

> ?

>

> Lots of single?folks on cruises these days.? Maybe a little sun and fun

> will bring back some hope.

>

> ?

>

> Good luck, and know that lots of us have to fight to maintain hope to find

> a life long love.

>

> Peace,

>

> Rhonda

>

> [ ] Coping when relationships go wrong

>

> I am a new member. Apologies for wading in with a heavy topic at the

>

> outset but i simply don't know where to turn. My son is 26 and

>

> diagnosed with CML and AML in 2006. STC in May 07. GvHD since sept 07

>

> but coping quite well. Until this week when his fiancee left him and

>

> called off their wedding scheduled for 2nd August. They were together

>

> for 7 years. She was fantastic throughout the early stages of illness

>

> and transplant. He proposed on Christmas eve and she seemed truly

>

> happy to be getting married. then the bombshell. My son is

>

> distraughtas he sees no future at all now where once he had some hope.

>

> I have only come across stories where love has seen couples through

>

> adversity and never ones where one of the couple cannot hack the new

>

> future. Has anyone one else had this happen to them or a loved one?

>

> Is there the possibility of a future for him or is he correct when he

>

> says how bleak it all is? The normal phrases about fish in the sea sre

>

> redundant - he is disabled now. he can't father children and his life

>

> span is truncated. That can't be it though can it? Can it? I'd love

>

> to hear from anyone who can offer a glimmer of a chance.. Many thanks

>

> for your time

>

>