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#1 wallystl

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Posted 30 December 2011 - 09:21 AM

Best wishes for a good day for all of my fellow CML'rs!

Haven't been around here since November.  Many changes here, some good some bad.  Still in the trial drug Potanib & responding fairly well however the sides are difficult.  Just finished meds for significant head/chest infection, not sure I'm clear of it at this point. 

Since my last post I've had to quit the new job.  Hours were too demanding & with my endless fatigue it was a disaster.  I actually fell asleep- head down on my desk 2 times.  I think with my red eyes & constant exhaustion the coworkers thought I was a drug addict-LOL?  So I'm unemployed & have surrendered to being unemployable at this point. 

I started sessions with a psychologist at my cancer center about 4 weeks ago.  Its been difficult to admit that I'm depressed although those around me have said so for about a year.  I'm on a 6 week evaluation program after which we will decide if I'm going on depression/anxiety medication.  While I've always been quite private with my emotions its been good to talk with someone about my fears and my on going battles with cancer & sides. This service is offered free of charge at my center, I'd encourage everyone to think about seeing someone at some point to help with the emotional issues involved in living with cancer.

Thankfully my wife finally completed her exit from our home after a 6 month torture session.  Living with a spouse for half a year who has mentally & emotionally abandoned me was more trying than living with cancer.  I'm happy she is gone while mourning the loss of a woman & friend that I once thought enough of to marry.  Experiencing financial difficulty following her exit and things are uncertain here.  Nevertheless I'm hanging on hoping to stay in my home until Jon leaves for the Air Force Academy (I hope he is accepted) or college in 2013.

I'll have a good thought for all of you as we exit the year and prepare for the next.  Hang in there!



#2 Marnie

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Posted 30 December 2011 - 09:56 AM

Hey, Wally. . .

I'm glad that you're hanging in there, even though things are pretty rough.  I'm glad for you that the wife is gone so that piece of negative energy is out of your life and you can concentrate on you.  Sad, though.  You said it wellin your post. . .mourning the loss of someone you used to really love.  Life changes people.

Good luck as you move forward.  I like to believe that things happen for a reason and that there is light at the end of every tunnel, though it's sometimes hard to see.  I'm toying with the idea of seeing someone to try to deal with the stress that I can't seem to manage very well.  Between cml stress and job stress, it's taking a toll for sure.  You've given me a positive nudge in that direction, though I'm not quite ready yet.

Keep in touch and good luck as you work through the tough things.  The financial piece is a monster, for sure. 

Marnie



#3 jrsboo

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Posted 30 December 2011 - 12:50 PM

"A diamond is merely a lump of coal that did well under pressure."

And you know what they say............a diamond is a girl's best friend.  

After all you have been through, I am sure then when you are ready, there will be someone phenomenal who will appear.  I applaud you for getting the emotional help that you need.  Therapy can be such a wonderful tool, stress has a way of appearing even in things we are unaware of.

Best of luck to you and your son in 2012!

Caroline



#4 AliceJane

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Posted 30 December 2011 - 01:32 PM

Wishing good things for you and you son in 2012!

glad you are taking care of you with talking to someone.  After 4 years of trying to handle all the emotional stuff alone, I have made decision to find therepist who can help me deal with this stuff better.

I used to think that people who disappeared during bad times or pressure was just a sorting of the chaff from the wheat thing. Who needs them right? I have since decided it is not so clear cut. Found out some just could not handle it when they were scared they might lose me. So, I have decided some friends and family are givers and takers, some are just givers and some are just takers.  I can live with that. Not every relationship will last forever and not all are equal. But they were or are in my life for reason and will be thankful for that.

My imperfect self is also sometimes a giver and sometimes a taker, on better days both.

alice



#5 pamsouth

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Posted 30 December 2011 - 02:15 PM

Wallystl,

You are not alone referring to the negative stress and your wife leaving.

It is odd that when diagnosed with a devastating illiness, the ones who support us, and the ones who leave us, or give us grief. 

I was diagnosed with CML in 2005 at the age of 57 years..   My best friend was my daughter who was an RN at a children hospital, until she retired after her 3rd child, her husband is a doctor. After I was diagnosed with CML she, my daughter, became my worst nightmare, she was angry at me all the time, didn't matter what I did.  Angry because she referred me to a clinical trial ( a friend doctor of theirs) of 400mg vs 800mg of Gleevec.  I went to the 2 hour lecture.  Took home a ton of paper to read.  I said no I didn't want to do it.  Changed doctors.  Decided to fly from my home in Indiana to MdAnderson in Tx for follow up and a second opinion.  All my daughter would do/say, is call or send me hateful emails, about how I was not a doctor and how foolish I was.  I was on a cancer list at church, where my daughter's family went to as well, The cancer list was probably 100 names long (3000 members).  She scolded me,  because she didn't want any one to know I had cancer.  She didn't want me to talk about CML to anyone but her.  It goes on and on  and on.  She is a nurse, I am her mother, and I had to stay away from her, because it made me cry all the time.  Then she got mad because when she wanted me to tell her details. She would say first you want me in your life then you don't what up with you, whats wrong with, up and down!   I would say lets not talk about it, it is too upsetting. Then she would get mad and say she had right to her opinion and I should listen.  That has been six years ago and it has never changed, so I keep a distance.  It is sad when I think about it.  But It is just way to much negative energy for me to handle.  I do not understand her, she was an RN at a leading children hospital in the ICU newborn.  When did she get that cold.

Anyhow I now stay around people that give me positive energy.  I think my daughter was mad because right before I was diagnosed my mom passed away and I had been taking care of mom for 3 years, so I wasn't always able to help my daughter, as much with her, preschooler child, and take care of her dog and stuff, all the time, like I did before I started taking care of my mom.  I come from a family of 5 sibling, but they wren't able to take care of mom, so I brought her from her home about 100 miles to live with us, then she got better and lived in an apartment close to us until she had a stroke. I don't know, I don't understand my daughter, it is a mystery to me. You would think things would change with time, but no.  I sometimes think because my daughter and her husband are fairly wealthy and live with the jet set, maybe it has went to her head, I don't know?  Sorry for rambling.

Anyhow negative energy is bad.

I have been on Gleevec for 6 years.  I would like to follow your story on your trial drug Potanib.

Prayers for you,

PamSouth


PamSouth


#6 Judy2

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Posted 30 December 2011 - 03:05 PM

Hi Wally. I am sorry for all that you have been through and am hoping that 2012 is a better year for you. In times of crisis we find out who are real friends are. My mother had an expression- There are the people who give ulcers and the people who get them- your wife seems like a giver. Although it must be extremely difficult for you to deal with the loss of your wife in the long run I'm sure you will be far better off. I,too, have been having a dificult time dealing with the CML and other things that have happened in the last year. I  had been contemplating seeing a therapist but was stuck, I wasn't doing anything about it. I decided to see a new onc, I saw him for the first time a couple of days ago. He asked me what I was doing with my days, I told  him not much of anything. He asked me if I was seeing a therapist, I told him no but thought it might be a good idea. He said he was going to get me a social worker at the hospital. I am so glad that he initiated the conversation and is helping me with all of this. I was in a rut and am so thankful for being helped out of it. Having a chronic cancer is stressful not to mention having to deal with the financial aspect of the illness. I think it's great that you are going for help, just another way of taking care of yourself.

In regards to the Ponatinib, please keep us posted. I am in the middle of changing drugs right  now, I will be going on Sprycel. I am having a difficult time trying to get a med that works for me and  that I can tolerate. I heard that Ponatinib is scheduled to be FDA approved sometime in 2012, that it's been having great results and is also effective for the T315I mutation. Are you on Ponatinib because you had the mutation?

Anyway, I'm wishing you and everyone on the board a Healthy and Happy New Year

Judy



#7 wallystl

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Posted 01 January 2012 - 10:38 AM

Thanks everyone for your comments & well wishes. 

Yes I am still in the Ponatinib trial going on 9 months.  I went on the trail after failing on Gleevec & Sprycel & getting the t315i mutation.  I've had a rocky road with all of the drugs and the side effects have been debilitating.  I don't know why I struggle so much with the drugs.  I've always been a dinosaur with food, drink, pain, stress...seems these drugs just knock me for a loop.  When the mutation was diagnosed I received a call from my Drs. N.P. "we'd better start rounding up the donors"  she was hell bent on transplanting me.  I was resistant to the transplant as I have a 17 year old who I raise as a single parent.  So the trail was a god send for me. I tolerate the sides ever mindful of the transplant that is always looming in the background.

Yes my trial manager said Ponatinib might be FDA approved in 2012 if everything goes forward as they hope.  I can't explain how fortunate I feel to have been accepted into the trial and to be part of the process in approving a new treatment for CML'rs. 

Happy New Year Everybody!!!

Wally



#8 Judy2

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Posted 01 January 2012 - 02:49 PM

Does anyone know what causes the T315i mutation or any of the mutations?

Judy






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