16 replies to this topic

[TomL]

My state DDS sent me for an appointment with Shrink today. This is all new to me so I am not at all sure what this is all about, so I do not know if this is common or not. When the shrink was asking me about the support groups I had I told her about this site. It is funny that in such a short period of time I feel like this is "family" here. As I told her, you are the only people I feel like I can really talk about how I feel; what I am going through; Where I get answers, sometimes without even knowing enough to ask a question. I want to thank you all for being here because until today I never really knew how important this is. I lurked for a long time before I started to participate, so if there are any lurkers out there, do not hesitate jumping in. We all have questions, concerns, and fears. I did not tell the Shrink, but my biggest fear is that the side affects and mystery maladies are leading up to that day when I finally develop an outright allergy to Gleevec. I am not as afraid of that now, since I have learned so many of you are on alternative drugs having the same life-saving results. Everything about this forum is positive in my life. BTW, a large part of the Shrink's exam had to do with dimensia-type tests; I remember the three items, drew the picture, finished the complete sentence, folded the paper, all that stuff, so I suppose I am lucid.

[gark]

     It has been almost five years for me on gleevec 800mg/day.  The first three years my symptoms, especially pain, tendonitis like symptoms, muscle soreness, and slow healing were much worse than the last two years.  While my symptoms have not gone away, they have improved considerably, even the fatigue.  I remember almost always thinking my body was rejecting gleevec, but I have come to see side effects as just that, and our bodies seem to cycle through them, and then they just start making less noise.  Hope that helps some.  hang in there.

[TomL]

Thanx Gark, that means a lot to me. 

[JJR]

TomL,

Sounds like you had a mini-mental status exam today.  I am a shrink (psychologist) with CML and I agree that this site is a great support.  To each his own.  If you need more support, I am sure there are accessible cancer groups in your area or perhaps there is a medical social worker at your clinic.  I have contemplated this myself but didn't like the idea of driving the distance at the time and was somewhat in a hibernation mode.  I don't like making my life more complicated either (I have young kids, a few different jobs, etc.). On this site, I am a patient and not in the role of giving professional advice but the level of support you need may be based on a number of factors including your own comfort level, where you are at with your CML, your current level of support, and your ability to cope.  I am still in the information gathering phase and like to feel proactive and informed.  However, I have also gone through phases of "please let someone else research my problem."  I hope you find what works for you.  Best of luck, JJR

[Trey]

Why do you need some DDS imposter when your have us as Best Imaginary Friends (BIFs)?  Where else can you have BIFs make fun of you, talk about your potty habits as if we were normal, wear ostrich feathers and opine on existential hypocalesteliemia (not a word -- don't look it up), and use funny names in place of our own?  Sort of like a Star Wars bar scene, don't you think?

http://www.youtube.c...feature=related

[JJR]

Trey,

Can we come up with best imaginery CML cures as well?  Has anyone investigated: Cannabis Edibles + Swedish Massage + Stand Up Comedian Combination therapy as a replacement for TKIs in the induction of apoptosis?

JJR

[Trey]

There is no indication that hedonistic pleasures cure CML.  But maybe a clinical trial would be in order to test the theory.

[hannibellemo]

[jrsboo]

I will willingly volunteer for that clinical trial...........as a gesture of good faith toward all my BIF's.  And yes, I agree that this site is amazing.  One my Aunts keeps asking if I have joined a cancer therapy group..........I finally was able to convince here that this was better.  Given the statistically low numbers of us, even if I were to go to the cancer center's "group", the odds are, that no one there would have CML, there would be mostly other acute cancers.

Here I am among my own, who are taking the weird drugs that we take, that no one else seems to have even heard of, and can ask about the side effects.  Even my ONC who is a top researcher in the field of CML, can only realistically see about 10 of us...........maybe.    And that would mean that she would have to see just about every single CML patient in the Puget Sound area!

I love my BIF's.

--Caroline

[soundoff]

This discussion board is "priceless"

I cant tell you how many times my BIF's have helped me.

[Cathy]

I went to a cancer support group a couple times in the beginning of dx. And everyone was very sweet but I was the only one with CML and I felt that I was too healthy to be there. They all had been thorough so much more then I had. I felt guilty for being there and didn't have much to share they could relate to. I felt horrible too at the time, but felt it was nothing compared to what they were going through. 

So in my experience all the BIF's on this site are so much more comforting because we all are feeling and going through so much more similar side effects, feelings etc. Just like when people say we have the "good" kind of cancer. LOL

But I am very thankful for all of our drugs and for my BIF's

Happy Thanksgiving to everyone!

[TomL]

Cathy, I know exactly what you mean. I see some people at the VA going through so much more than I am. But the other side of the coin is when friends and family members look at me and think I look normal, why am I out of breath or ??? And the woman at Social Security looking at me and thinking "You have to be kidding". And I will be so especially thankful on Thanksgiving, my second since dx.

[Susan61]

Hi Tom:  Glad your not a lurker anymore, and got right in with all of us.  We do get a lot of support from each other on every subject we can think of. We have great family support, and we love them for it.  The thing is that they can only support us out of their love for us.  Nobody understands all that goes with it, except for all our friends on here.  You will be counting many more Thanksgivings after you celebrate this #2 as you said.  I am looking forward to my Christmas # 12 this year.

I was diagnosed on Christmas of 1998, and have counted my Christmases since that day.

     I saw a psychologist in the beginning of my journey with CML, and she used to talk to me about her Breast Cancer.  I did not get anything out of it, and left her.

Then I weaned myself off of my Zoloft, and its been much better.  Been on 400mg. Gleevec since Oct. of 2000, and I just take one day at a time.

    Enjoy your Thanksgiving Dinner.

Susan

[knoppl]

This is the only place that has brought on a chuckle about CML. I am still trying to figure out the Trey/Phil thing though. I suspect a history long before my time on the site, their banter makes me smile,laugh and think, so thank you!

[PhilB]

The Trey / Phil thing is actually very simple.  Before I came along Trey was getting so much adulation from people on here, thanks to all his arcane knowledge, that the Department of Homeland Security suspected he was about to launnch a new cult religion.  They sent me along to thwart his plans.

[knoppl]

I thought it might be soomething like that!LOL

[CallMeLucky]

   Trey wrote:
   There is no indication that hedonistic pleasures cure CML.
   But maybe a clinical trial would be in order to test the theory. 

 

Having just gotten back from a Caribbean vacation, I can honestly say that there may be something to this.  Aside from the occasional stomach cramps in the morning and my legs getting a little sore on the sight seeing day when we went cave exploring, I hardly thought about CML or felt much of any side effects.  There is something therapeutic about sitting on a tropical beach under the sun with a warm breeze.  Of course I'm back to reality now, it's friggin cold in North East US and I already feel more fatigued first thing in the morning than I did at the end of any day last week.  I never discount the stress/emotional side effects of CML, they are very much a part of the ride.

As to other threads regarding cancer support groups, I tried that early on as well and didn't find much success with it, I had about a week and a half worth of CML experience under my belt when I went to the support group.  I spent my time explaining to the other members and the two group administrators what CML was and how it was treated.  I recognized early on that this group is a much better support network for me.  Although I have had a few one on one sessions with a private therapist to get into some of the stuff the CML has stirred up in my head.