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Topic: Illinois ladies facing bc

Forum: Member Matchup & Local Support Groups —
A place for members to request and respond to requests from women looking for a one-on-one mentor, or to connect with others living in similar geographic areas.

Posted on: Jan 13, 2007 04:10AM - edited Jan 9, 2009 09:29AM by ritajean

ritajean wrote:

I'm very curious about all the Illinois ladies who are making this breast cancer journey or who have finished it. Where are you located? What's your diagnosis? Where are you in your treatment plan? How's it going for you?

I thought we might be surprised to find somebody right in our own back yard that could use some encouragement or company.

I'll start us out. I live in Bloomington. I was diagnosed in Nov. 2006 with IDC cancer, 1.4 cm. er-, pr+, her2-. Stage 1 but that horrid Grade 3. Had an excisional biopsy that came back without clear margins. Went to Peoria to an excellent breast surgeon. Had a lumpectomy with sentinel node biopsy. Nodes and margins were both clear. Now I'm headed for my first CMF chemo on Jan. 26th. I'm very nervous about the chemo, which I dread more than any other part of the journey, I think.

Hop on here and tell us about yourself. There may be some of us that are even close enough we could meet for an outing some time.

Rita
Dx 11/21/2006, IDC, 1cm, Stage I, Grade 3, 0/4 nodes, ER-/PR+, HER2-
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Jan 13, 2007 04:25AM chemosabi wrote:

Rita: Hi! I live in Glendale Hts which is a Western suburg of Chicago. Hear you all are getting hit with an ice storm so I hope all is well.

Im 56 y/o. I was diagnosed April 2005. er/pr negative. Her2+, brca 2+. One positive lymph node. I went through 8 rounds of chemo and finished one year ago. I was also very scared about getting chemo. In fact I would have done anything I could to get out of it. Its doable. Keep coming here, cause you will meet lots of people and we can help you get through this. One year later, I have a really cute hair style and Im feeling good.

Nicki
Waving hello to everyone
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Jan 13, 2007 04:49AM ritajean wrote:

Hi Nicki,

So glad to meet you. I'm 59..forgot to mention that in my original post and a grandma to boot!!!

I do know where you are located. My son worked for Parker Hannifin company in Lincolnshire for many years and lived in Cary. It's just a "hop, skip, and jump" up to you. Now he's plant manager of one of their plants in Deerwood, MN...nearly 12 hours away by car.......and I miss him and his family.

Thanks for the encouragement. I am so glad you are doing well. Success stories are what we all need to hear and there are many of them out there.

As for the freezing rain, it hasn't arrived here yet but is being predicted. We've had the rain...just hasn't got to the freezing point so far.

Keep in touch. This might be fun to see where our Illinois "sisters" are located and I do think we can help each other.

Rita
Dx 11/21/2006, IDC, 1cm, Stage I, Grade 3, 0/4 nodes, ER-/PR+, HER2-
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Jan 13, 2007 05:34AM Brenda_R wrote:

I'm downstate from you 2. Between Springfield,IL and St.Louis.
Dx IDC grade 3 12/12/06
ER- PR- Her2 +3
Pet/CT shows mets to inner mammary node chain and bone in several areas.
Dx Stage IV 1/11/07
Lumpectomy with axillary node removal 12/29/06
Clear margins, no axillary node involvement
I see the Onco this coming Wed to set up treatment schedule.
I will do chemo, rads, and most likely Herceptin.
I just turned 51.
Dx 12/12/2006, IDC, 3cm, Stage IIIA, Grade 3, 1/17 nodes, ER-/PR-, HER2+ Surgery 12/28/2006 Lumpectomy: Right; Lymph node removal: Right, Underarm/Axillary Chemotherapy 1/27/2007 AC Radiation Therapy 4/30/2007 Breast Targeted Therapy 7/9/2007 Herceptin (trastuzumab)
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Jan 13, 2007 05:56AM SurvivorSue wrote:

Rita,

I'm in Bloomington as well. Original diagnosis in April of 2003 was DCIS with no positive nodes. So, no chemo nor radiation recommended. In 03, I had a bilateral mastectomy, using a Bloomington surgeon.

In December of 05, felt enlarged lymph node under arm. Turned out to be leftover disease. Sought 2nd opinion at Northwestern in Chicago.

Had full lymph node dissection (this time with a Peoria surgeon), 2/11 nodes positive for disease, 8 rounds of dose dense chemo (ACT) and 33 radiation treatments.

ER/PR-,HER2 -

Sue
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Jan 13, 2007 06:07AM SurvivorSue wrote:

Rita,

Chemo wasn't as bad as I feared - the mediport I had was a lifesaver though because it removed the need to have IVs with each treatment.

I have a survivor group at work with 80 members and it seems like everyone's experience with treatment varies. One of my drugs was Adriamycin which lowers a person's white blood count, so this was probably my worst side effect. Thankfully, my employer allowed me to work from home when my immune system was impaired. I was able to work through radiation, but some in my survivor group had terrible fatique during radiation. So, once again, I think each person's experience can vary. I worked closely with the oncology nurses who were able to help me with the side effects I experienced. And, talking to other survivors helped tremendously.

I have a website, www.amt2.homestead.com, I maintained during my journey. As I read some of my posts, I realize how far I'm come...this can be a scary journey, but know you are surrounded by many who care.

Sue
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Jan 13, 2007 06:46AM ritajean wrote:

Hi Brenda,

So glad you posted on this thread. It appears that the two of us will probably be doing treatments at about the same time. Please check in often and keep in touch. It's so nice to meet you.

Rita
Dx 11/21/2006, IDC, 1cm, Stage I, Grade 3, 0/4 nodes, ER-/PR+, HER2-
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Jan 13, 2007 06:54AM ritajean wrote:

Hi Sue!

I've already been to your website and have discovered that we have the same doctors....Migas and Jalovec, and in my opinion, they are GREAT!!! I love you website. It's so informative and made me realize that some of the emotions that I have been going through are not unique to just me.

I have discovered that the Cancer Center here is indeed a haven of help. In fact, on Thursday I'm going out to a Nutrition session to see if I can get some hints on how to eat for success with this disease.

Congratulations on completing your treatment journey and on your positive attitude, as well as your interest in helping others deal with this journey. I was not as positive as you at the first but have done better once I learned more about my situation and could see progress being made.

Please come back and "cheer us on" as the rest of us struggle to get through the treatments. We need bubbly survivors like you to tell us IT CAN BE DONE.

Rita
Dx 11/21/2006, IDC, 1cm, Stage I, Grade 3, 0/4 nodes, ER-/PR+, HER2-
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Jan 13, 2007 03:02PM bwetzel400 wrote:

Hi. I am from Highland Illinois about 30 miles east of St. Louis Mo. I do treatments at the Siteman Cancer Institute in Missouri.. In Oct. 06 I had lumpectomy for a 1.2 cm er+ pr- her2- stage 1 grade 2 tumor. sentinel node with 2 extras taken all neg. and no blood vessel involvement.. had oncogene dx and score was 17 so highest on the low chance side. Am doing cmf all IV every 3 weeks for 6 to follow with radiation but a chance I will do bilateral mastectomy instead.my tumor never showed on any mammograms or sonograms I had 3 each. I could feel and see the lump . had mri before lumpectomy I got sick from dye and had to be pulled out so did not get clear idea before surgery. 30 days after surgery I developed a staph infection I am still battling. so another mri only showed the 6 cm seroma I had and on the other side it showed something suspicious but they were not sure what.. so with all that I am steering towards the masectomy fo0r peace of mind . I never want to do this again.. thats my story. kind of hope there is noone in my area going thru this] but if so would love to know..
brenda
\
hello to susan. how are rads going. Candie when do you start rads and hope I remembered to congrat you on finishing cmf.Sue hello. Holly are you feeling better?
Ginney how about you.. will catch the rest later
you guys are wonderful
brenda
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Jan 13, 2007 03:08PM bwetzel400 wrote:

oops forgot I am 45 with 5 kids 25 down to 5 and a 7 month old grandchild ouchhhh
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Jan 14, 2007 07:25PM mnance wrote:

Hi, I live in Chicago, on the northwest side. In April 06 my mammogram showed changes in the microcalcifications that we had been following for some years. Biopsy showed DCIS. Had a lumpectomy, and then the surgeon called and said that I might consider an SNB due to the extent of the DCIS. Had that and one node had a micrometasis. On the the oncologist who said I could have chemo or not, that it would reduce the chance of recurrance by about 5%. So, I decided to have the chemo, to do everything I can. Just finished DD 4AC/4T last week. Everything went pretty well. Since my insurance would pay, the form of taxol that I had was abraxane which doesn't need steriods and anti-nausea drugs. For those four treatments I felt really good, just a bit tired.

I've been measured and tattoed for radiation which I start on 2/1 for 6 1/2 weeks.

BTW, my doctors are at Rush Medical Center and I've been very pleased with them.

Good luck to all!
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Jan 15, 2007 11:03AM ritajean wrote:

To Brenda from Highland.....

You have had quite a rugged journey already. How many of the CMF treatments have you gotten through and how did you do with them?

Rita
Dx 11/21/2006, IDC, 1cm, Stage I, Grade 3, 0/4 nodes, ER-/PR+, HER2-
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Jan 15, 2007 11:10AM ritajean wrote:

Hi 6 Kitties.....from a one kitty gal!

Thanks for adding your info and congratulations on finishing the chemo part of your journey. I had lunch with a gal today who assured me the radiation part was a breeze compared to the chemo so you're probably on the "down-hill" slide. I noticed that you are an educator. What do you teach? I taught middle school and then junior high science, a total of 33 years. I also started Questions Galore, the current state provider for junior high scholastic bowl questions and just sold my business last year to a gentleman in Wheaton. I still write a few questions for him on the side.

Keep us informed on how your radiation is going!!

Rita
Dx 11/21/2006, IDC, 1cm, Stage I, Grade 3, 0/4 nodes, ER-/PR+, HER2-
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Jan 15, 2007 06:07PM Pollywog wrote:

I live in East Central Illinois, near Shelbyville. I had my surgery and treatment at the Regional Cancer Center at Sarah Bush Lincoln Health Center in Mattoon, IL - which happens to be the hospital where I work as an RN.

48, one child (out on her own, sort of ), husband. Medullary cancer, 6mm, grade 1, stage 3, ER/PR+, her2 neg, SNB clear. 2 lumpectomies, finished rads mid Dec '06. I stopped taking the Arimidex, and will probably get chewed out when I next see the doc. Shrug.
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Jan 16, 2007 03:41AM ritajean wrote:

Hi Pollywog,

So glad to meet you. I've been in your area lots of times. Decades ago I had a friend who went to Lakeland College in Mattoon and now we come to Lake Shelbyville at least once a year. We also like the summer festivals in the small surrounding towns.

I think I am going to have to take Arimidex when the chemo and rads are done. Do you mind if I ask why you stopped taking it? Did you have problems and adverse side affects or did you just decide that you didn't need it?

Check in often and keep in touch.

Rita
Dx 11/21/2006, IDC, 1cm, Stage I, Grade 3, 0/4 nodes, ER-/PR+, HER2-
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Jan 16, 2007 03:49PM mnance wrote:

Rita,
I work as assistant dean in the College of Business at Roosevelt University in Chicago/Schaumburg. I see lots of students and go to lots of meetings. I used to teach accounting at Roosevelt (been there 28 years).
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Jan 16, 2007 05:04PM Pollywog wrote:

Rita, I had a long post typed up, explaining my reasons, but it was rejected. I don't have energy enough to retype it tonight; but will answer you soon.

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Jan 17, 2007 07:11AM Pollywog wrote:

Okay, I'll try again.

I had varied reasons for going off the Arimidex.

In March '05, I had already began menopause when I had a total hysterctomy - uterus, ovaries, tubes, cervix. I was put on HRT in spite of my objections (aunt with BC). I hated the HRT - it made me nuts. I cried at cat food commercials, for Pete's sake! I was waaay to nice - which in my job as a nurse on an inpatient psych unit, was not a good thing. I stopped the HRT cold turkey after a few months - which also was not a good idea I went back on it, at a lower dose, and weaned myself off of it over the course of about a year. Then, 4 months after that, I'm diagnosed with BC. Did I mention that the aunt with BC also had been on HRT? I honestly believe that the HRT was a factor in my BC. Yes, I am aware that my body continues to produce hormones without ovaries, but at a much lesser rate, and - they are my body's own hormones, one that they recognize; not something made from horse urine.

Per the sheet the doctor gave me, 5 years of Arimidex would increase my 5 year survivability rate 1.7% For some folks, that might be enough edge; for me, it wasn't worth the quality of life issues Arimidex raised. The onc told me we could "manage" quality of life issues - ie: take a pill and shut up.

Okay - quality of life. My body just does not like foreign inputs. I take an aspirin about once every three months when I have a headache I can't get rid of any other way. I take Benedryl if I get stung by a bee (bee venom = foreign input). That's it. I've learned the hard way that my body doesn't appreciate other meds.

Arimidex leaches calcium from the bones, causing osteoporosis and leaving you very vulnerable to fractures. When I had my bone scan done, the docs couldn't believe that they were looking at 48 year old bones - they were in that good of shape. I was told that I needed to take Calcium with Vitamin D to slow the bone loss. Can't take calcium - 14 kidney stones. And I live on a farm. I jump on and off of equipment, get shoved around by critters, etc.. I don't need fragile bones. I'm not taking Fosamax either - too much bad hype about it on the 'net.

Arimidex increases your cholesterol level. My cholesterol is already borderline high (I'm working on it - naturally, with apples and oatmeal). My Pop died of coronary artery disease, as did his sister. Two of his brothers have had multiple stents and bypasses. I could take a statin drug - no, thank you.

Hot flashes. Sheesh. 36 in one day. 16 of them at night. I could take Neurontin...

Insomnia. Did I mention the hot flashes? Try to sleep with those. I could take Ambien, Lunesta, Sonata...

Depression. Did I mention the insomnia? I could take Effexor...

Mood swings. Did I mention the hot flashes, the insomnia, the depression? I could take - oh heck, insert drug of your choice here!!

Brain fog. Did I mention the hot flashes, the insomnia, the depression and the mood swings? They don't have any drugs to push on you for brain fog.

Pain. Pain in my hands that made it hell to try to do my charting at work. Pain in my knees that made it impossible to sit for any length of time. Pain in my back that made it impossible to find a comfortable position to lie in in bed. Pain in my knees and ankles that made it torture to walk. Pain in my head and arm from where I got out of bed to go pee and fell against the door jamb of my room because my knee and ankle joints wouldn't move. I've been off the Arimidex for almost a month now, and the pain in the joints hasn't gone completely away; I'm just hoping that it does. My water bill's gone up by 1,000 gallons from all the hot baths I take to soak the aches out of my bones!

But your experiences may vary. Some folks have no problems with Arimidex at all. I figure that I gave it a shot; and that I made an educated and informed decision about stopping. And I'm willing to take the risks. My family supports my choice.

Polly
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Jan 17, 2007 07:31AM ravdeb wrote:

Just stopped in to say hi to the Illinois ladies. I was born and raised in Illinois and I love hearing familiar names like Rush Presbyterian hospital and Roosevelt University.

I grew up in Elmwood Park and then Oak Park..just 20 minutes west of downtown Chicago.

I miss it!

Moved to Israel in 1987 but I go back to Chicago just about once a year (though I keep trying to figure out my budget so I can go more!) I love Chicago!!!

Ladies..be well. I did dd AC followed by 12 weekly Taxol. My body didn't take to the AC well..had only 3 out of 4. So, after a break (some break...I was hospitalized for a month with a severe bacterial infection!) they put me on the 12 weekly Taxol and I was fine. Then I had 33 rads.

I was diagnosed in Sept of 2005 with IDC, triple neg, no node involvement.

Take care of yourselves Illinois Ladies!
IDC, 2cm, triple negative, grade 3, node neg Dx 9/5/2005, IDC, Left, 2cm, Stage IIA, Grade 3, 0/1 nodes, ER-/PR-, HER2-
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Jan 17, 2007 07:32AM jz20022001 wrote:

Hi Sixkitties, I got my MBA from Roosevelt, when it was located in Arlington Heights, IL.

Pollywog, I know those areas. I went to college in Champaign, IL and taught junior high at Edgewood Grade School (just off I-57 17 miles from Effingham, IL where I lived for two years.) I am originally from Northfield, IL (northern suburb of Chicago) and I've lived in Glenview for 25 years.

I was diagnosed with DCIS in May 2003. Everything is fine now.

Catherine
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Jan 17, 2007 07:40AM kats wrote:

Hi Rita,
Good idea to start a thread like this, I've always wondered about other Illinois ladies on the board. Always nice to meet other Illinoisians, is that even a word?

I'm just east of Elgin, near Schaumburg & Hoffman Estates.)

I'm 52 now, was 48 and premenopausal when diagnosed in May 2003. ILC (invasive lobular carcinoma) 1.3c, stage 1, grade 2, lumpectomy then re-excision sx to get clear margins, SNB neg, ER/PR98%+, HER2-. I did CMF chemo 6months/12infusions, 6 weeks of rads. I'm in permanent menopause now brought on by chemo. Currently on Tamoxifen, tried Arimidex for a few months but due to side effects went back on Tamoxifen (will probably try Arimidex again later this year).

What CMF regimen are you going to do?

Mary

Hi 6kitties...that could me my name too
Mary "What lies behind us and what lies before us are small matters compared to what lies within us." Ralph Waldo Emerson Dx 5/7/2003, ILC, 1cm, Stage I, 0/1 nodes, ER+/PR+, HER2-
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Jan 17, 2007 11:40AM ritajean wrote:

Hi Mary,

Glad you like the idea of the Illinois thread. I hope lots of Illinois gals join us! Congratulations on getting through your treatments! YEAH!

I start my first CMF IV infusion on Jan. 26th and of course am a little nervous, especially since right now my stitches are healed and I'm feeling really good. I will take 6 IV treatments....3 weeks apart. They will do the first four and then insert the 6 weeks of radiation in before I finish the last 2 CMF infusions. It's pretty spread out that way and I'm hoping to be finished with the ordeal by good golfing season! :-)

If you've got any good suggestions for any of us, just jump right in and let us know, and please come back often.

Rita
Dx 11/21/2006, IDC, 1cm, Stage I, Grade 3, 0/4 nodes, ER-/PR+, HER2-
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Jan 17, 2007 11:48AM ritajean wrote:

Hi Polly,

Thanks for taking the time to explain why you quit the Arimidex. I was told that I would be put on it (about 6 months down the line when I get through the dreaded chemo and the rads) and I was worried because the onc told me about the joint pains. Hey, I already have joint pains and sure don't need any more! I hadn't heard about all the other side affects that you experienced, so they are good to know as I have some time to consider this yet. Luckly I am Her2 negative so don't have to tackle the herceptin. Did I say LUCKY???? Is anyone with bc really LUCKY??? lol Did all your side affects stop after you got off the drug? My body doesn't like drugs either. I even got nauseous from the anesthesia after the excisional biopsy.

Anyway, so glad you explained your situation. Keep in touch so we know how you're doing and share your experiences with those of us that are just getting a good start on this journey!

Rita
Dx 11/21/2006, IDC, 1cm, Stage I, Grade 3, 0/4 nodes, ER-/PR+, HER2-
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Jan 17, 2007 11:51AM ritajean wrote:

So glad all is well with you now Catherine! We need to hear success stories like yours. I have the utmost respect for any lady who has gone through the bc treatment process! Come back and visit us often.

Dx 11/21/2006, IDC, 1cm, Stage I, Grade 3, 0/4 nodes, ER-/PR+, HER2-
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Jan 17, 2007 12:01PM Anonymous wrote:

Rita: thanks for starting this and hello to my fellow Illinoisians. I grew up in the Quad-Cities, went to school in Urbana-Champaign and now live in suburban Chicago. I'm 49.

I had 4cm IDC in September of 03. Mastectomy with immediate latissimus flap reconstruction. 4 positive nodes. Dose dense chemo, 4 AC and 4 Taxol, 28 radiation treatments. Took tamoxifen for 2.5 years (no periods but tested pre-menopausal). Have been on Aromasin since August 2006. Also had thyroid cancer last fall. My children (3) call me a "walking bag of cancer." My philosophy is that you have to laugh at this disease or you might just cry all the time!

Joanne
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Jan 18, 2007 08:34AM wendyk13 wrote:

Hi fellow Illinoisians! I'm in South Elgin, western suburb of Chicago.

I was dx'd at age 53 with IDC and DCIS, ER/PR+, Her2neu+, post-menopausal, lumpectomy & 7 nodes - all clear. Getting port in next Tuesday, then first of 6 TCH Friday 1/26. Onc also wants genetic testing as my Dad at age 85 and his sister at age 82 were dx'd with breast cancer...thankfully I don't have children to worry about HOWEVER interesting enuf onc was the FIRST doctor EVER to recommend the gene testing to either my sister or myself! Sister went to her dr and he said "forget about it" and she has 2 grown kids with kids. Oh well...face that hurdle another day!

To Nicki: took your advice and switched oncs within the group at Delnor...what a sweetie!

To kats (Mary): I'm just W of you in S. Elgin off 31...hope you can work out your difficulties with arimidex...let us know how you do.

Wendy
Wendy Dx 11/20/2006, IDC, 1cm, Stage I, Grade 2, 0/7 nodes, ER+/PR+, HER2+
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Jan 18, 2007 10:42AM SuperSurvivor wrote:

Hi Ritajean, 6kitties and Catherinef,
I live close to all of you. I live in Vernon Hills. It is so nice to know there are people out there that are like you and live close. I have had BC for 13 years (Dx @ 28) I have had 4 recurrences and am going through one right now. I have been married 13 years and I have one 3 year old son. I have tried to mantain a positive attitude thourgh this whole thing but lets face it........IT SUCKS

Hugs
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Jan 18, 2007 11:06AM ritajean wrote:

Hi Wendy from Elgin........welcome to the Illinois thread. I'm so glad you found us here. You and I are starting our treatments on exactly the same day....the 26th. I am taking 6 CMF infusions spaced three weeks apart. How often are your treatments? So anyway, we'll have to compare and encourage each other as we travel this journey. I'm a little nervous about the whole chemo deal. I spent an hour at the cancer center today with a nutritionist who's really up on they types of things to eat during chemo and later (and very realisitc, too.) She gave me alot of information to read through and a couple of books about research, foods, and breast cancer. Should prove interesting reading on those nights I can't sleep! :-)

Anyway, welcome. We can all help each other get through this! Come back often.

Rita
Dx 11/21/2006, IDC, 1cm, Stage I, Grade 3, 0/4 nodes, ER-/PR+, HER2-
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Jan 18, 2007 11:11AM ritajean wrote:

Hi Joanne,
Welcome to the Illinois thread! I grew up about an hour from the Quad Cities in a little town right on the Rock River near the Sterling-Rock Falls area. We came to the cities when we needed to do alot of shopping so I'm very familiar with that area. I still love going back to the Riverboats there! :-)

I am so sorry to hear about your latest cancer. Did they treat that also with chemo or did they use a different technique?

Rita
Dx 11/21/2006, IDC, 1cm, Stage I, Grade 3, 0/4 nodes, ER-/PR+, HER2-
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Jan 18, 2007 11:19AM ritajean wrote:

Hi Sylvie...you are indeed a super survivor. Oh my gosh, girl! I can't imagine going through this journey 4 times...I'm being a baby about it the first time around and I'm a granny, not a young gal like you. You are indeed a strong lady and I have the utmost respect for you. We will help you get through it again this time! Hugs to you and that adorable little boy!

What type of treatments are you facing this time? My thoughts and prayers are with you. Come back and vent when you need to do so. We're here for you.

Rita
Dx 11/21/2006, IDC, 1cm, Stage I, Grade 3, 0/4 nodes, ER-/PR+, HER2-
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Jan 18, 2007 11:20AM Anonymous wrote:

Rita: Papillary thyroid cancer is a slam dunk compared to breast cancer. It's the most curable kind and mine was early stage with no lymph node involvement totally contained within the thyroid. My only treatment was total thyroidectomy. Some people have to take radioactive iodine treatments for this, but mine didn't warrant it.

It's fun to connect with all the Illinois BC ladies. I am near many of you (Nicki, kats, Wendy) as I am in the western suburbs. Do any of you go to Edward Cancer Center in Naperville?

Joanne

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