10 replies to this topic

[Joy_in_Phoenix]

I am looking for a support group to help me discuss my CML and to meet others with it. I was diagnosed May 1 2013 with CML. Have since been on Tasigna and have had some terrible emotional/hormonal bouts and already had dry skin and now it is 10 times worse. I also seem to not be able to concentrate or focus and it has affected my job to a small degree. I feel like crying a lot too, for no apparent reason. I am wondering if anyone else has experienced these things and how they coped with them.

Should I get my hormones tested?

[mariebow]

Hi Joy I am not in the phoenix area but I have the dry skin and there is already posts on here about the dry and wrinkly skin.

[GerryL]

Hi Joy,

I'm from Australia, so can't meet up with you. You've only recently been diagnosed, it took me at least six months to come to terms with it. Plus another friend of mine was telling me it took her 18 months before she stopped spinning from the diagnosis. It takes time, so go easy on yourself.

I'm on Gleevec, but there are plenty of people here on Tasigna who may be able to come up with suggestions for the dry skin issues.

Welcome to the board, you'll find a lot of friendly helpful people here and you won't feel so alone.  

[Joy_in_Phoenix]

Thanks- I did a search and what I found was very helpful...

[Otigon]

Hi Joy,

I'm much in the same boat as you. I was diagnosed in April and am now on Tasigna 300mg twice daily. I had, and still do to a lesser degree, the dry skin. It was pretty fierce at the beginning but has tapered off since. I found that a good oily based hand/body lotion works very well for this.  As far as concentration goes, I still haven't found a way around that. Maybe our brains are just too busy coping with the shock of diagnoses??  Anyway, I'm in Texas so I can't get out to Arizona readily. But if you want to chat since we seem to be going through the same stuff I'm here!

Thanks,

David

[Joy_in_Phoenix]

Thanks for the reply Gerry. Ive Always wanted to go to Australia... It's reassuring to hear it takes time to cope and learn how to handle this. The time frame for each individual is probably different, although hearing about it helps. It seems to come and go, the emotions. I see my oncologist Thursday so we'll see where all my levels are at then as well. It's been 2 weeks since last CBC. Have a great day!

[Joy_in_Phoenix]

I was at 300 twice daily as well, but I started having bad headaches and bouts of craziness is how if put it. One minute I'd be happy then very mad to the point if wanting to punch a wall then happy then sad, all in the matter of 5 minutes.  So since my WBC was back to 2500, they took me off Tasigna for 2-3 weeks, then my levels  rose to 8000 and they reintroduced Tasigna again but at 1/2 the dosage. That is where I'm currently at. I haven't had a CBC since and I go in this Thursday for one and to see the onc. My headaches have returned, although not as bad and the craziness has went away and been replaced by emotions that I spoke of in my first post and the dry skin. I'm 38 years old and no cancer runs in my family so, I was definitely shocked when diagnosed.

I'd love  to continue to  chat David~ thanks

[CindyS]

Hi Joy -  I live in Prescott Valley and I believe there is a support group in the Phoenix area.  I remember reading a post about a meeting back in May of this year.  If you search on Phoenix CML it will bring up that post and probably contact information for the person who organized it.  I thought about going, but was busy that weekend and couldn't make it.  I'm 56 and was diagnosed in August, 2011 so I'm coming up on my 2 year cancerversary.  I am on Gleevec 400mg and have a lot of issues with side effects, but I'm learning to deal with them.  Dry skin and sun sensitivity is a problem for me also.  I stay out of the sun as much as possible and use lots of moisturizer and sunscreen.  I've also increased my water intake.  I will say that it seems to have leveled off now and doesn't seem to be as much of a problem as it was in the beginning.  I have had some emotional/hormonal issues too, but because of my age, I'm not sure if I should blame Gleevec or menopause!!  I remember the first few months were quite a roller coaster ride, but I promise it gets better.  I actually have days that I don't even think about it, which is nice since it seems like in the beginning it consumed me.  There is a wealth of information on this board so keep checking in.  Good luck with your journey!

Cindy

[Joy_in_Phoenix]

Thank you Cindy -

I am so glad you are doing well and that you have days you don't even think about it. I can't wait for those days... I will keep searching and learning more about this disease, and the side effects..Thank you again..

[PhoenixPat]

Hi Joy - I'm a CML patient in Phoenix.  The dry skin that we already deal with here due to living in a desert is definitely made worse by the CML drugs. You may find working with a dermatologist to be helpful.

In terms of other CMLers, there are several living in Phoenix, ranging from children to the elderly. The National CML Society  (NCMLS) serves US patients and has local patient meetings in many cities through their CML Connection program. The first CML Connection meeting in the country was held in Phoenix in 2010. There has recently been a change in meeting facilitators and I don't have the most current information to share at this time but you could get more information from NCMLS executive director Greg Stephens by writing him at gstephens(at sign)nationalcmlsociety.org. You can find additional information on the NCMLS website at http://nationalcmlso...a-cml-resources

In terms of local support I would urge you to check out The Wellness Community which offers a wide range of free services and oncology social worker led support groups, as well as support in nutrition, exercise, appearance and more. http://www.twccaz.org/

Another wonderful nonprofit is the Face In The Mirror Foundation in Scottsdale. http://faceinthemirror.org/

You are welcome to connect with me through this forum's connection service if you would like to talk off line and exchange emails and phone numbers, and perhaps meet for coffee. It's always nice to connect with another CMLer.

Hope that helps!

Pat Elliott

CML patient and advocate

Phoenix, Arizona

[Joy_in_Phoenix]

Pat -

Thank you for the reply and all the links... I recently went to a CML support group through the National CML Society  (NCMLS) - It was a nice meeting, and interesting to hear other peoples stories as well. I have the persons name and contact of whom will be the new meeting facilitator.Your name sounds familiar for some reason - maybe you were at the meeting. I would love to exchange numbers, emails and possibly meet for coffee as well.. . my email is jmknippel@yahoo.com I look forward to hearing from you