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Anyone near the Eastern Sierra Nevada Mountains, California with CML? (worried we're the only ones!)


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#1 smbutters

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Posted 26 April 2011 - 12:01 AM

Hi - I have been following this site for awhile and finally decided to find out if anyone out there is near us and would possibly want to meet.  My husband was diagnosed with CML in Oct 2010 and started 400mg of Gleevec.  He is responding very well, thank the Lord.  His next biopsy is in less than two weeks and we are praying for the best.  Everyone was so upset and concerned when he was first diagnosed but now, I think some of them wonder 'is he really that sick' because he looks so good and always has a positive outlook.  Only those of us who have to live with this everyday know the agony of wondering what news will the doctor have at the next appointment and dealing with the side effects that are mostly only seen at home.  I know this may sound silly but I need someone to talk to who understands what I am going through.  My family rarely mentions it and I know they certainly don't want to hear details - I guess they don't know what to say so avoiding it is the best solution.  So, I would love to actually physically meet others who are going through the same thing we are - and maybe make some friends out of it, which would be wonderful.

So, my husband just turned 34 and I just turned 33.  We don't have any kids yet - starting the infertility testing stage.  But we love animals and have two dogs and four cats.  I wish everyone the best and am glad we have sites like this to share and stay connected.

    

Steph Butters



#2 CallMeLucky

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Posted 26 April 2011 - 02:44 PM

Hi Steph,

I'm not in that neck of the woods, but we are always here to "talk" with and share advice, experience, and be a sounding board.  Others from your area may respond, but if you don't get anything back, some other resources you may want to check out:

www.nationalcmlsociety.org

www.cmlearth.com

Best of luck to you and your husband..


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#3 Marnie

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Posted 26 April 2011 - 04:49 PM

I Steph (and hubby). . .

I'm in Colorado, so if you're ever out this way on vacation (great place to visit!!) stop on by.  Stay in touch on the forum.  It's pretty darned theraputic and very helpful.

Marnie



#4 Berkalvee

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Posted 27 April 2011 - 01:28 AM

Hi Steph, just wanted to drop a line and tell you that while I am not quite that close to you (I am in Albuquerque, NM), I have a very good friend that is the director of the LLS Team in Training for the Bay Area (not quite eastern Sierra Nevada's, I know, but closer than where I am ) and he organizes events all over northern CA.  Perhaps if you were to get in touch with him, he could point you in the direction of others like your husband.  I should also say that I am four years in since my diagnosis, taking 400 mg of Gleevec daily, and I am the lucky father of an eight month old daughter.  It was an adventure to be sure, and I never stopped taking Gleevec while our baby was conceived and things have been great so far with our baby, no complications other than the fact that she was born four weeks early.  Any other questions, please feel free to send me a message.  Take care, Berkley



#5 smbutters

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Posted 05 May 2011 - 12:10 AM

Thanks so much for the info.  This really is a great site.  Best of luck to you as well!  Steph



#6 smbutters

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Posted 05 May 2011 - 12:14 AM

Hi Marnie - Yes, it has been very theraputic to see others going through the same thing.  Never been to Colorado, except for the airport, which I think is the one that my husband always comments on the weird symbols they have everywhere.  Thanks for the reply and good luck!  Steph 



#7 smbutters

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Posted 05 May 2011 - 12:23 AM

Hi Berkley - Thank you so much for the response.  If you don't mind, I would love to get the info from you on your director friend.  My husband doesn't like to do any research on CML (and sometimes I want to forget about it as well) so I have been trying to get as much info as I can and would love to attend some CML events.  We were actually in San Fran/No CA a couple of weeks ago.  I am so glad to hear you are doing well after 4 years on Gleevec and were able to start a family.  So far Gleevec has been working well for my husband and I am so thankful.  Good luck to you and you new family!!  Steph 






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