47 replies to this topic

[jenz]

Hi, I am a newly diagnosed CML patient living in Indianapolis, IN and was curious if there is anyone else out there living with CML in Indiana?  I am 26 years old and found out last November about the CML. I have been on Imatinib since I found out making progress getting rid of the philly chromosome.

[donkatking]

Yes, I live here in Indianapolis on the East Side near Ft Harrison.  In was diagnosed with CML in February and my doctors are through Community Hospital.  I have met one other person with CML who was from Elwood.  Small community I think we are.  I hope things are going well with you.  I woke up this morning feeling very good and just checked my sugar which was well in the normal range for the forst time since checking.  I'm currently on Tasigna which to say has has me in a tailspin the past few weeks but I'm gonna beat this and try to be as normal as possible with my everyday activities.  Glad to know someone from Indy!  GO COLTS!!  

[jenz]

Hey! Thanks for your response.  I am seeing a doctor at the University of Chicago after being freaked out by an unexperienced doctor here in Indianapolis.  I think you are right we are a very *small* community of people. I have emailed another person who is up in Fort Wayne but that is it.  I am trying to get a CML group going in Indianapolis similar to the one in Phoenix and other cities.  Would you ever be interested in meeting up? I am working on becoming a state representative for the National CML Society. Have you ever heard of them? They are on facebook and have a great website with a lot of great information. 

[tbecki]

I live in Indianapolis area (Brownsburg) diagnosed in 12/06.  Currently taking 400mg Gleevec.  Surviving with normal side effects.  Achieved Complete Molecular Response (CMR) in January 2008.   Very fortunate.  I do have a great Oncologist, Dr. Ruemu Birhiray.  He is part of the St. Vincent's network Hematology-Oncology of Indiana.   He is very involved with the Leukemia Society.   Frequently does seminars in the Indianapolis etc...  If you are looking for additional information let me know.

[jenz]

tbecki, Hi.  I would love to hear about your experiences.  If you'd like you can email me at jenzcml@gmail.com

[jsmiddiebrush]

Hello!

I also live in Indpls (north side). My husband was diagnosed with CML in July 2008.  He was intially seeing an oncologist associated with St. Vincents on 86th Street, we were very happy with her, she got him started on Gleevec with good results.   In about January 2010 we transferred to St. Francis in Beech Grove so he could participate in a clinical drug trial for Tasgina (which at that time was not yet approved as a first line drug.)  He's doing even better on Tasigna than he did on Gleevec!  Overall his quality of life is quite good! 

I know of at least two other people in the Indianapolis area with CML.  One of them was diagnosed in 2001, the DAY BEFORE Gleevec was approved!  She's training for a Team in Training Iron Man (Women) Triathalon this summer!

Joanne

[jenz]

Joanne,

Thanks for responding.  All of you have lifted my doubts that there were more people out there in Indianapolis.  I have gone to a few LLS blood cancer meetings and have yet to meet another CML patient in the flesh.  So that is why I decided to become a state representative for National CML Society.  Would you and your husband be interested in meeting up for a CML Connection meeting in Indianapolis? I am just starting this journey and would love to opporunity to meet new people to hear how their journey has been.

[shirlken]

tbecki

Hi becki:

I live in Indy and go to the same group of oncologists that you do.  I kknow Dr. biharay but go to Dr. Milton.  Was dx in 06 and doing great.  I live close the their offices.  Call me.

581-1121

[shirlken]

tbecki:

I was also diagnosed in 06 I have tried to get a group of CML'ers together a few years ago with no results.  It would be interesting to compare notes.  Hope to hear from you

shirlken (581-1121

[donkatking]

This is great!  I'm up to the task and can be reached at 641-9486.  I'm on the east side of Indy and it looiks like there is someone from the north side and the south side.  Keep me posted as my email is donkatking@yahoo.com

[tbecki]

shirlken, I believe Jen is trying to get us all together to compare notes.   Looking forward to meeting up. 

[jimmac]

Hi I would be interested in a meeting place just name a time and date I live in Anderson so Indy is not that far hope it happens before golf season

[jenz]

All:

As promised a Indiana CML Connection meeting has been setup to be held on the evening of April 13th .  Please follow the link below for all the details and please RSVP if you will be able to attend.  Drinks/Appetizers will be provided at the restaurant and I really am excited to finally meet anyone.  Also if you know any additional CML'ers that I might have missed feel free to invite them as well.

http://tinyurl.com/C...ct-Indianapolis

I look forward to meeting you all next month.

Jen

jzinkovich@nationalcmlsociety.org

877-431-2573 x 711

[jsmiddiebrush]

Thanks for setting this up.  I just RSVP'd for two - my husband who has CML and myself.  I work downtown and LOVE this establishment, so the location and time is perfect.  Do you know which room we'll be in? 

[jenz]

Hi, I do not know what room we will be in yet.  I've had a few events at the Rathskellar in the past and they've always done a phenominal job. I will look forward to meeting you and all the others!  If I get more information on the room I will let everyone know.  I plan on arriving early probably around 6 PM to setup and everything.

Jen

[jenz]

All:

This is just a reminder that the first Indianapolis CML connection meeting is next Wednesday April 13th 2011 6:30 PM est at the Rathskellar Restaurant! I look forward to seeing everyone there.  If you haven't already RSVP'd or know of someone else that would like to attend please forward them on this information.

http://tinyurl.com/C...ct-Indianapolis

Jen

[jsmiddiebrush]

Hi everyone - so nice to get together last night!  My husband and I found it very helpful to hear all your stories, and how everyone is doing.

We mentioned that we go to a couple of programs at the Indianapolis Cancer Support Community (formerly known as "The Wellness Center")

its on W. 71st St. near Georgetown Rd.  Here is that info:

Cancer Support Community, Inc.
5150 W. 71st Street
Indianapolis, IN 46268

Phone: (317) 257-1505

http://www.twc-indy.org/index.htm

All of their programs are free, patients and support folks are welcome.  You have to sign up in advance for some of them.  They have their full calendar of events on their website.

The Cooking for Wellness Class is awesome!   (You do have to sign up for that one in advance because it fills up quickly.)  The instuctor, Jodi, demonstrates everything, gives out the recipes, AND we get to eat it all!   She focuses on organic, whole foods, nearly always vegetarian, and usually pretty simple to make.  The Cooking classes are held twice a month.  In April, the classes will be Monday the 4/18 and Wednesday 4/20, at 6;30.  We'll be going to the Wednesday class.

Joe goes to yoga class on Tuesday nights, and really likes it.

We don't do any of the support groups, but they have many of them, as well as other programs too.

Thanks again to Jen for setting this up, and I look forward to seeing you again!

Joanne

[donkatking]

My wife and I enjoyed the time we spent with others going through CML.  I want to especially thank Jen for setting this up.  I did learn first hand how CML affects others and to see faces personally makes really real.  Again thanks for letting me blab and thanks for telling us your stories.  I look forward to meeting again in a few months.  Don and Katherine

[jenz]

All.

It has been two months since our last meeting and I wanted to start organizing something for the month of July. We decided previously we would prefer to meet once a Quarter so this is in line with that schedule.  So I wanted to email today and see who would be interested in attending the upcoming meeting? And what works best for each of you evenings or weekends?

I am trying to get the best turnout possible so please respond if you are able and let me know.  Right now I am thinking it will be either the 2nd or 3rd week in July (btwn 11th-24th).

I appreciate your reply and I look forward to seeing everyone next month.

Thanks!

[jsmiddiebrush]

Jen - we'll be out of town thru July 10 - so something later in the month would likely be better.  Downtown weeknight worked great last time.....but whatever works for everyone is fine by me.   Thanks for setting this up.

Joanne