Illinois ladies facing bc
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Hi ladies,
I haven't posted here in awhile. Just had AC #4. Due to start Taxol 9/26. I will get that for 12 weeks. I am dealing with a cellulitis infection on my mid back. Right on my spine. I have no idea why that location. It was first diagnosed as a kidney infection. And then it started acting like shingles. The onc still feels that I will be able to start the Taxol in 4 days.
The gathering in Chicago sounds fun. I'm looking forward to the December gathering. I'm sure I'll be set to make it.
Hope everyone has a great day!
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Speaking of the IL get together....6:30 right? The 30th? Was a final decision ever made on the place? I gotta check my train schedules.....
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Hi Mary!!!! Sorry about the cellulitis.....UGH!!!! I hope it clears up fast! Hugs to you!
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Yes 6:30, Friday the 30th. I don't think I sent an email about the final place. Guess it's my choice since no else has a preference. We are going Greek. I will send out another email.
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I will be telling my cabbie where to take me so I'm good with Greek.... Ka bobs!!!
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SAVE THE DATE!
Our very own, blackjack has been a busy, busy, Illinois girl! She's working on the details of our annual HOLIDAY LUNCH BUNCH!
Saturday, December 3, 2011 - lunch time (working on the exact time)
Keep the date open if you would like to join us.
If you are not on our private e-mail list - just PM me and I will add your info.
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Thank you for the birthday wishes and the beautiful cakes! I had a nice day but didn't really celebrate too much. DS had a football game and both kids have tests tomorrow. So, we will go out this weekend for dinner. DH got my car detailed for me - it is so nice and clean!
Had my 6 month onc checkup this week. All is good and the MRI I had two weeks ago was clear! Going on 4.5 years!! I can't believe it has been that long. It still seems like just last year.
I hope everyone is doing well - haven't had a chance to catch up on all the posts - hopefully this weekend!
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Rita, I found this little charmer in my Picasa album and I thought you'd enjoy meeting her. She is sitting on my desk-top now.
Hugs, Jackie
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What a cute pic of the kitty.
Connie, that is fantastic news
Laura, thanks for the support! I met w/oncologist. No radiation needed. Yay me!! Yes to chemo...Boo. As of now, surgery to remove skin that's not viable-Sept.28. Having port placed Oct. 13th. Chemo begins Oct. 18th. And before chemo starts, I have to squeeze in, echo on heart, bone scan, labs, chest films, us on abdomen. I think I'll have a xanax and bed, I'm exhausted just thinking about it!
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The Chicago dinner sounds like so much fun, and so happy so many are able to make it. I'll miss it as I'll be in Charleston that week, but I hope I get to meet you all at the next gathering. So many of us now, I'm having trouble keeping up!
Connie, hope your birthday was fun, and have a lovely dinner this weekend. Congrats on the good check up. That's the best gift we can get.
Marina and WendyTY, thinking of you everyday.
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I'm just trying to catch up with... life. Had the proph. Mx last week and everything went well enough. Was hoping to get the drain removed today, but he decided to wait one more week. I will tell you ladies that this Mx was waaaay easier than the one 6 years ago. Of course, that one also involved SNB, but it's the placement of the TE that is done differently now that really makes a big difference in the discomfort. Not that I'm not still sore and kind of wiped out, but just not as bad as I remember it.
I don't regret my decision for a minute. I'm relieved it's gone. Hopefully, there will be just one more surgery to swap out the TE for another implant, and replace and reduce the existing one. Then I'm crossing my fingers to be DONE. *knocking on wood too*
Rita - This is late, but condolences to you and your DH on the loss of his mother. My mother has stayed with me most of this week and losing her is something that I just cannot imagine.
Robo - Your inspirational post made me smile ear to ear. :-D. I recently watched Fried Green Tomatoes and I could almost hear you shouting, "TOWANDA!" while standing naked in your bathroom.
Susan - I'm with you on the AI's. I'm due to finish in December, and at this point if they tell me it's beneficial to continue, I will do so. I know it's rough for you gals just starting out, but my personal experience (after having to change from Aromasin to Femara because of severe SE's,) is that it can get better over time - if not exactly perfect. Unfortunately, it's like most things medical, it's just not a black and white situation for everyone. I'm more concerned about the thinning hair than the aches and pains at this point. Even that seems to have slowed down.
NancyJill - Welcome to the group. There are a lot of wonderfully supportive ladies here to help you with questions, and more importantly maybe, to listen to you vent if needed.
Connie - Happy Belated! A clear MRI is a great birthday present.
Welcome to anyone else I missed. Sorry I'm having a hard time keeping up with all the newbies!
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BTW just in case you didn't see this:
Who should take AI past 5 years?
(Really should say who should take Endocrine therapy past 5 years)I found the powerpoint rather interesting. And if you don't know about luminal A and luminal B this linky has a detailed explanation.
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I'm so sorry the quote is so late today.
"Live life and take chances. Believe that everything happens
for a reason and don't regret. Love to the fullest and you
will find true happiness in life. Realize that things go wrong
and people change, but things do go on. Sometimes things
weren't meant to be. What is supposed to happen will work its
way out."
-- Author Unknown0 -
Good morning everyone. Just wondering is anyone racing for the cure tomorrow?
I noticed "$35-$45; $25-$30 for kids ages 17 and under" Is that just to participate in the walk or to be let into the event? Anyone headed out to the Chicago event tomorrow just for support?
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Hmmm?? That's a great question? My cousin is doing the Lombard one so I'm planning on taking my daughter and go check it out....I'd like her (daughter) to get a feel for events like this and just the overall support feeling and just how many people are affected and involved. Oh, and alive!!! :0)
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Well there is no way I can make it to Lombard that early otherwise I would join you. Anyone interested in the Chicago one let me know. I went last year by myself (because for some reason I was blind and couldn't find you gals). I wouldn't mind going again but NOT alone.
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Lago, I'm sorry I did not understand the power point whatsoever. And I need to as they took me off Femera the other night due to pain so bad, I was in tears. We will wait a month and then decide whats next for me. This morning I am thinking I dont want to take anything....So please explain. I thought I was done with chemo brain but it took me three days to remember my password to get on the internet. lol. Onward
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Onward I am no expert but this is my understanding.
Luminal A = ER+ and/or PR+, HER2-, low Ki67 (low proliferation) HER2-
Luminal B = ER+ and/or PR+, HER2+ (or HER2- with high Ki67)I think you are luminal A unless
• you had a high proliferation rate
• or were HER+The study in PPT indicates that women who are luminal A will benefit taking horomone therapy for more than 5 years but women who are luminal B not so much. (I'm luminal B, triple positive with a high Ki67).
My gut feeling is that chemo can do it's job on those fast growing cells because they are all actively growing. Women with slower cancers need something in their system longer for when those slow growers wake up.
I don't know your full history but Femera is only one drug. I have read that many women go off for 1 month then go back on and their SE are minimal. We also know some women do better on other AIs. And of course there is always Tamoxifen… at one time that was the only drug that pre & post menopausal women could take. Also I have read there are natural ways to reduce the estrogen in your body.
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I think I'm starting to develop neuropathy??? Does the tingling subside?? UGH.... Can I do anything to make it better?
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Jenn I think some people take Vitamin B complex and L glutamine. Put that in the search function on here and see what you read. I didn't get neuropathy but I remember reading about people taking it. I am so glad we got to walk yesterday! You looked adorable in your hair piece...I would never have known it was not your hair. I can't wait to walk again soon!
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In listening and getting to know the true us, our soul, we become empowered and limitless. ~ Jenny Mannion
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Jen I took Acetyl-L-Carnitine* and it seemed to help. I started neuropathy after my 2nd tx. You must tell your onc about this…very very important. If it gets too bad they will reduce your dose. I ended up with it only in my left heel. It just started to get better 2-3 weeks ago although still numb. It takes a long time to resolve but in most cases it does.
* I did not have my NP's blessing on this but at the time I was pissed at her because she seemed to say no to everything so I took it anyway. If they say it doesn't help I would tell them you would like to try it anyway. I would also tell them to check this linky out at the NCI (read the section at the end entitled Clinical Research Ahead)
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Onward....I too sometimes forget my passwords. Too many now, and even my bank will lock me out if I don't change my password with them often enough. I starting to think I am going to have to come up with a code.......something so I can recall not only the password, but where I am using it. Some sites only give you three trys and they you have to wait a day or so.
Had a rugged day yesterday, but a good nights sleep and I'm raring to go. Last night I was so exhausted but feel perfect this morning. Just a good testimony for getting the rest you need. Such a restorative.
Lago.....your description clarified things for me a little better. Onward, I hope you do see this relationship. Interesting......I had one slow-growing tumor, and one aggressive one in the same breast. So......hmmm. Taking something longer could definitely be in my picture.
Hope you are all going to have a great Saturday and get to do everything that makes you happy.
Hugs, Jackie
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Lago....do I need to make a special call or email or can I wait until my next chemo to address??? I probably shouldn't wait, it's pretty tingly today?? BOO!!!
Mdg.....thanks for the walk and the love for my new hair piece.. I wore it last last night to dinner with a baseball cap! Luckily we went to a sports bar type environment so my DH's corona hat was acceptable!!! 0 -
Madmom when in doubt just email unless it's an emergency. I'm sure there is nothing they can do about it now but why wait. If you read your binder it says they want to know about this SE. You might find it will get better by your next tx. Mine did until about the 5th tx. Then it never went away.
I will admit though that unless I was in pain I just came in with my list of issues at my appointments.
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LOL Lago....I just pulled my white binder off my bookcase and read it. If it's still really strong on Monday I'll shoot an email, otherwise I think I'll just add it to my list for next time too. It's my feet and palms mainly....and not horrible, just annoying.
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Thanks for the links, Lago. I'm sure my onc will fill me in on the latest recs regarding continuing AI's or not for me when I see him next, but I am curious about that Ki67 factor. It's not something I see on my original path report, but my path report is 6 years old. I wonder if they were even testing for that then. I'll have to ask him. I know I am both ER and PR + >90% though.
I might get into the city today, but only to help my son get his new rental together. I'm so excited for him, and I think the area he's in is perfect for him and his roommates. I am sad that he won't be around to eat dinner and watch shows every night, but at least he's really close and can come by anytime.
Onward, I'm so sorry about those painful SE's. I went through the same thing after trying Aromasin for 10 months. I thought I could just push through it, but one day I was shopping with my mom and the throbbing pain in my hands was SO overwhelming, I broke down crying right there in the store. I called my Onc from the parking lot and he told me to stop the Aromasin and prescribed me a Medrol pack (steroids) for a week to take down the inflammation. I felt fan-freakin'-tastic on those. LOL. Too bad you can't take them long term! After a break, he had me try Femara. Which, while not perfect, was more tolerable for me. And fortunately, did get better in the long run.
Good luck with finding what works for you, and I'm glad you're taking a break.
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Lago, I think you are exactly right and that is how I read it too. My MO had already stated that he believed that I would need to be on something for 10 years. Tamoxifen for 5 and then a "lets see" for the next 5 (I will be 44 at the end of my 5 years). I am what you described ER/PR+ with less than 2% ki67 score.
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I think my path report has a ki67 on there???? I'm gonna go look....
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