TRIPLE POSITIVE GROUP
Comments
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The number of locations is growing all the time - you might contact your local Y and find out if they have any plans to start. It is possible that if they get enough folks to participate they can get a grant going. It is not limited to BC - they have all kinds of cancer survivors. I know that my MOs office is aware of the program and is trying to steer their patients there if they are interested.
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SpecialK...Do you have to be under active treatment?
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Dventi and Sheila. My port was put in on the left side as well since my BC was in the right breast.
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sheila-here is the link.
http://www.livestrong.org/What-We-Do/Our-Actions/Programs-Partnerships/LIVESTRONG-at-the-YMCA
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sheila888 - no, just someone who has had cancer. I actually think it is better if you are not currently being treated. I started this program while on chemo (what was I thinking?) and had to drop out because of Taxotere induced body-wide swelling. It triggered LE in the cancer-side arm, so then I was routed into PT, so I am just now getting back to Livestrong. It would have been better if I had just waited, both for me and for them! I was told by the coordinator that I could just re-start the 12-week program, so that is this week's goal!
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I will say this though about Livestrong and BC survivors - if you are at LE risk, I would suggest that you not allow the initial assessment to be pushing the max weight you can. They should tailor the program taking your LE risk into consideration and just have you work with light weights and stretching for the upper body. Gradual building of weight is more appropriate, and pushing as much as you can right off the bat is a recipe for disaster.
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Fluff....we were posting the same time.....Thanks for the link
SpecialK...We have a Y about less than a mile but they are not participating...the other one is about half an hour and they are...i have to study this.
Thanks again for bringing this to our attention.......
what would we do without each others help♥
Good Night
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nite-nite!
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I drew a line in pen each side of my bra strap on the day I went in and showed the radiologist that he wasn't allowed to put it betweeen the lines :-) He was impressed with how organised I was and we negotiated the best positioning.
Jenn0 -
Congratulations on your 2 year anniversary, kayb!
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Kayb I'm right behind you. My 2 year "official" diagnosis will be July. What I difference 2 years makes. At this time 2 years ago there was that scary black cloud over my head. Now I just feel like me again (with a few changes). I'm looking forward to celebrating the 2 year NED in August. How about you?
If there isn't a livestrong program near you check out gilda's club. (Do a google search: gilda's clu, your city/state) I know the one in Chicago has some exercise/yoga programs too as well as other support programs… all free.
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Thanks everyone about port placement... You are the best!
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Ironically mid July is when I got my path results from my biopsy.
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My port hurt like heck for 2 weeks after placement (in chest). Actually, port placement hurt
more than Mastectomy. But I am sure glad I have it. It was worth the pain.
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We did everyone start saying they "had" vs "have" cancer?
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So had results today (mastectomy and aux node clearace 3rd may) im triple positive,lump was 6cm by 4cm ,grade 3 and 15/31 nodes involved.eeek ,am in complete chaos as from biopsy i was told at least 1 node maybe 2 and the cancer they thought it was was triple negative
, got to go for all scans now ,liver,lungs bone etc, i asked onc if there waas any difference in someone having 6 nodes and 6 involved and like me 15 involved out of 31 he didnt reply ,does anyone know xxx 0 -
Welcome cornishmaid!!! You are in the right place. I had 8 nodes, over 2 years ago and am doing great!
You will have the kitchen sink of treatment thrown at you, surgery, chemo and rads. The treatment trifecta, lol. It's all overwhelming at first, but there is light at the end of the tunnel. I feel well, and am greatful and happy to be here. I do think the sun shines a little brighter than I ever noticed before : )0 -
beachbum22 as far as I'm concerned I had cancer. I will be celebrating 2 years NED (no evidence of disease) Aug 31st when my tumor was removed. Seriously after my surgery I felt it was gone.0
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cornishmaid The herceptin and chemo will kill any buggers that got away. Being triple positive we have all these guns: surgery, rads, chemo, herceptin, hormone therapy. Nice to have a fully staffed army.
Keep us posted. Good luck with the scans.
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Dragonfly...I HATE heights. Ugh! I used to work in Manhattan and would always go down to the World Trade Center. There were glass panes on Tower 2 top floor that you could see the whole city. The glass was etched with building names, street names etc. People would lean into them, placing their foreheads against the glass and squeal since it felt like free falling. I tried it once, just to stare down my fear. I lept backwards and landed on my butt. However!!! I did look up a freefall place near here. Maybe just maybe....
We are going hiking and rafting in the Grand Canyon in a few weeks. It's something I have always wanted to do. We just got back from Rancho La Puerta in Mexico, hiking Mount Kuchuuma every morning. I will say I felt the rads damage to my lung. I have hiked that mountain many times, and after rads, it was a whole 'nother ballgame. I am doing lots of aerobic activity to try and expand it. Grrr0 -
Thanks LAGO
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thanks Lago. I'll check with Gilda's Club. I'll never forget the book she wrote about her ovarian cancer journey. What a brave and courageous woman.
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Cornish,
The "good" thing about the scans, they will let you know right off the bat if it has spread outside the lymphs. That's a very important piece of information. If it hasn't, then really the lymph nodes have done their job by collecting the cancer.....
And just because it is in your nodes doesn't mean a whole heck of a lot with triple positive. It seems triple positive cancer loves to travel (my Onc says it comes with a suitcase!) and lots of triple positive women have mets with ZERO lymph involvement.
Cancer travels three ways, through the lymph, through the blood, and through tissue. The lymph system can be checked, and tissue as well with scans. The blood highway is the wild card. As of yet there are no reliable blood tests....so no positive nodes, or all of em', it's a crap shoot.
Please keep us posted.
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Kayb-congrats!
Jenn-that was a genius idea. Mine wasnt directly on it, but I had a couple of bras that ad straps in different spots that always hit right on the edge. I was constantly moving it.0 -
Beachbum-I will never say I had cancer. I am just superstitious enough to think that would curse me! Lol
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Cornishmaid, wow. So sorry to hear that news. I will be praying for you as you get all your scans. TonLee has the right info and I will be praying that the lymph system has been doing its job and that's as far as any little cells got. Trapped in the playpen!
Keep us up to date.
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Vickilind, sorry you have to go through it, well all be hoping things go well for you with all the tests.
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Cornishmaid- Hoping everything goes well with the scans! I have heard so many women say that they had no lymph involvememt and yet had mets down the road. No guarantees with this fun disease. On the brighter side, my SO told me this was the 'best BC' to have as there are so many tx's vs. triple -. Stay strong!
On the port topic, I had 2 ports placed. The first one was in my upper R chest (BC on left), removed because of MRSA infection. The second was placed on the R side, about 10th rib level. This placement bothered me more because I'm a side sleeper. It was removed at 2 months d/t infection with a fungus. But that being said, they are wonderful. I could never have had the amount of accesses I received by vein only! I would not hesitate to have another one if needed some day. But I will elect to be out for the procedure, as it was much easier the 2nd time.
Has anyone out there lost their job d/t cancer tx? If so, what did you do? Seems I read somewhere about legal rights, but now I can't find it. Any info would be helpful. Thanks.
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Moni there is a lot of info and assistance with job/legal related issues from the American Cancer Society if you are in the US. Don't be afraid to call your local office.
Here are some linkies:
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