in person support
Posted 04 November 2015 - 09:44 AM
If anyone lives near Pgh,PA and is interested in meeting for lunch let me know and I will send email.
I'm 57,married,adult kids,but not working so I'm isolated most days.
Let's support each other and maybe go walking and talking together
Colleen CML/accelerated phase/Tasigna (400 mg) 2 x per day
Posted 04 November 2015 - 10:13 AM
Colleen - Good on you for pulling it together and making this effort for yourself. First steps! I am not in your area, and I am very hopeful that someone will come forward here who is, but I wanted to suggest (if you haven't done this already) that you might check with the LLS in your area (maybe CML Society also) to see if they can share names or have a group where you could meet someone. We used to be as rare as hens' teeth, but not anymore! There's lots of us around. Your onc (if local) might be another source - he/she could act as go-between for an initial contact with one of his other CML patients. And keep holding to the thought, depression ends. You have a future.
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
Posted 04 November 2015 - 10:44 AM
Colleen, this is from the LLS Pittsburgh website:
Local Family Support Groups
Open communication is critical for coping with the feelings that arise during illness. Family Support Groups feature sessions led by local healthcare professionals where you can share your concerns, fears, problems and experiences in a comfortable and caring setting.
The Western Pennsylvania and West Virginia Chapter offers several family support groups that meet on a monthly basis and are facilitated by health professionals. Groups take place in Pittsburgh (Shadyside, South Hills), Erie, PA and Wheeling, WV. If you've been touched by cancer (patient, caregiver, friend), you are welcome to join us. For more information, call us at (412) 395-2882.
If you attend the "groups" you can establish relationships with folks who might like to meet for lunch/coffee.
Posted 04 November 2015 - 10:52 AM
Colleen01 although I'm not in your area, I too understand how it would benefit us if we had someone to chat with in person....I was able to meet someone who I chat with pretty regular on the phone and through texts, it has helped a lot. I lean on him when I am in a "Rut" so to speak. (he to has CML, met him right here on this discussion board) so even if you don't get to meet them in person its still nice to have that contact even if only by phone. psssst were all here too
Diagnosed Oct 2013 Started 600mg of Tasigna on Nov 4th. Lowered dose a few months later to 300mg due to side affects stayed here declining PCR until March 2015 small jump from 0.0072 to 0.0083 scarred my doc into full dose of Tasigna again 600mg(been miserable since) but reached PCRU 06/15/2015(next test) and have been there ever since. Hoping to have another little one. I have the support of my doc to go off anytime, just scared to jump. might go two years PCRU but he said it wont make much of a difference. I just figured I could possibly go into a trial while preggers if I got the two years behind me.
Nov 8th 2017 went off Tasigna
Dec 1st PCRU off TKI
Jan 5th PCR Detected .0625
Feb 1st PCR Detected .7815
Added 8-6 grams Curcumin daily in Feb
March 3rd PCR Detected 3.2646 YIKES!
stopped trying for baby after February reading. will start new TKI march 16th 2017 (Sprycel)
FYI I'm not done trying for my last little one.
Posted 04 November 2015 - 03:52 PM
I agree so strongly with frogiegirl. Meeting in person would be amazing, but just having that person that you can connect with, that truly understands what is really going on just gives you a calming feeling. I know that we all family and friends as our supporters. But I have to say that the support I get from my great friend (Frogiegirl) is honestly more comforting than any other! And helping others and sharing your own ups and downs also helps you feel a bit of accomplishment.
Diagnosed in September 2011. Tried one year of Sprycel. Had great response. Became undetectable in a few months. Changed to Tasigna hoping for less side effects. Self medicated myself down to 20% dose and held for 3 years before becoming detectable again. It has been a journey that has helped me realize what life is about! I am all about a balanced life. I firmly agree with my decision to lower my dose. What is life if you aren't living? Mine will never be the way it was, but it is going to be as good as I can make it! Drs PRACTICE medicine, we can guide our dr to help us with a better life! Don't settle until it's acceptable to you!
Posted 04 November 2015 - 05:24 PM
Posted 04 November 2015 - 09:28 PM
I know exactly how you feel. Having a 'in person' person available is something that has been missing since diagnosis for me. There is a group that meets during the day in my area, but I'm working when they meet.
Posted 04 November 2015 - 11:08 PM
Hi Colleen. I live in Illinois, and I found a local group through National CML Society that meets every other month. It's a small group of us, but it helps to talk face to face. I didn't see anything in Pittsburgh when I looked, but they have other resources including Peer Matching.
7/2014 Diagnosed,8/14 Started 100mg Sprycel, 9/14 Thyroidectomy (thyroid cancer)
8/2015 Undetectable, 12/15 Plural Effusion (3 wk drug break)
1/2016 Started 70mg Sprycel, 3/16 Plural Effusion (4 wk drug break)
3/16 .014 after a wk w/o meds
4/16 Started 400mg Gleevec
4/16 Undetectable, 7/16 Undetectable, 10/16 Undetectable, 2/17 Undetectable, 5/17 Undetectable, 8/17 Undetectable
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