TRIPLE POSITIVE GROUP
Comments
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Omaz/Carberry the results of that study is for early stage and small tumors only and does presume the patient will be getting chemotheorapy & radiation. (Stage T1 or T2 tumors… less than 5cm) article in NYT
Carberry if your tumor is less than 5cm I would inquire about this. Standard care hasn't changed yet but it's worth asking about.
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lago, dont really know how accurate she was with the numbers, think she was just trying to make light of it so that I would understand the importance of having them removed. I really am in it for the cure, but want to be as less invasive as I can. She gave me some pamphlets about LE, so I will go with the program, and hope for the best.
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Carberry just to let you know my LE it is manageable. I would really get measured before hand though. At least you got infore before. I didn't get info till after my surgery when I picked up the script for the preventative sleaves for flying… that I now wear daily.0
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lago, thanks for the links...was just reading them...I will get measured. That was my BS response, that if I do get the LE we will just manage it, How bout we prevent it in the first place? Thanks for the infor. I may just print it and send to their office.
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carberry - I second what lago is saying. My BS did a test to measure me (electrodes) before surgery for LE baseline. However, now that I have very mild LE from rads my rad onc office referred me to the LE therapist and I didn't go back to BS. I will see him in July and maybe he will recheck me then. I would suggest the baseline as Lago said - and just schedule to get a sleeve. I have Stage 0-1 LE and now have cording (getting therapy which helps!) and had 2 nodes removed. When is your surgery?0
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omaz- surgery Mar 31 MX with diep recon. trying to cover all baselines, so thx all this info is great and I will get baselines.
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Omaz we have the same diagnosis. I had cording 1st but I too am between a 0 and stage 1 they think… I never had a baseline.
Carberry here's some info for you:
Risk reduction link
cord/web syndrome link
Finding a qualified therapist
Proper fitting of sleeves and gloves** I was initially fitted for sleeves/gloves to wear as a preventative when flying. When I finally did get LE the LE PT and LE MD said my sleeves were too short. Also said the gloves were too short (although I don't really need a glove. Gauntlet would be fine so not such a bit deal). I had no idea.) This place were I got them was recommended by my BS and in the same building where I was being treated.
Now I know they were clueless. They just wanted to sell me what ever they had on the shelf. I was also told I didn't need the silicone top. They still argued with me when I went back to get the longer sleeves. Ends up they only have the silicone ones in stock. They didn't want to order the correct ones for me.
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Hello ladies (and gents if any)...
Triple positive here Dx12/2004,multifocal ,DCIS,LCIS,IDC. 1 node /21 (positive w 4mm tumor inside)
Still here !!!! No scans but I cheat and have my OBGyn
Do markers
My best wishes for all my Her 2 sisters!0 -
Soccermom love to see "over 6 years" ! Keep it going!
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Glad to foster "HOPE"!
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Love, love to hear it, Soccermom!
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windlass - do you have any idea if they will give us the TDM1 when they get further into this if we were done with our herceptin over a year ago?
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Soccermom - always so glad to hear from you gals who are years out! Thanks for the inspiration/hope!!
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Blondie: The T-DM1 trial is open to ~135 women who are either doing neo-adjuvant or adjuvant therapy, so it's for the first round of chemo. They did a prior trial with women in stage IV who had stopped responding to other treatments and had very good results. With any luck, the trials will continue to go well and they'll move to Phase III (where they compare the drug to a control group receiving standard therapy). Then they'll apply for FDA approval, and if they get it, the drug will be available to anyone whose doctor wants to prescribe it.
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Triple+ here too!!
4 1/2 years out - after a "clean" mammo and breast ultrasound in July 2006, I had a breast reduction. My plastic surgeon found my 1.7 cm. tumour. 8 weeks later had a MRM , chemo, Herceptin, Tamoxifen, now on Femara.
Good luck to all my Her2 sisters, there is light at the the end of the fog (chemo fog, that is...)
xo
Caya
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Keep it going Caya. That's excellent. BTW I never got chemo-brain. Now if I don't start sleeping regularly I might sound like I have chemo brain.
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There are plenty of vaccine clinical trials for HER2+, check out BCT.org under vaccines. I got one and it ate all my Her2/neu all up and made my body have a surveillance system roaming around looking for any more that decides to come up. My website is www.shelleydodt.com.
I don't know why they don't have a vaccine page on here. There are over 30 trials for vaccines for BC. Chemo and radiation work differently and eventually fail, vaccines are for life.
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Good to hear it Caya!
I had a breast reduction on 8/26/09 and was told everything was fine....on 8/26/10 marked one year of my breast reduction and the date the radiologist told me she thought my lump was breast cancer (even though it hadn't been biopsied yet)
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Hi, Shelley, that website you gave us is not the right one, I think.
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Windlass, please check out the tread "Cold Cap Users Past and Present" on this site. It will give you information on the cold caps.
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Cool - thanks, Can-D. I'm excited to try and keep my hair, and people on this board have had good experiences.
I'll keep you gals posted.
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Windlass- I am doing the caps too. Washed my hair today for first time. 6 days after first treatment. I'm not going to lie-not being able to wash your hair is hard but at least it's an option for us!!!!! Keep hoping it goes ok-didn't shed that much after the wash...the real test will be next week:)
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Kris: You go girl!! Keep us posted on your success!!
(And I didn't know you had to wait 6 days to wash your hair.)0 -
Hey Kris and Windlass - I am on number 4 of 6 TCH, triple positive and using cold cap, too. It is all doable! You go girls!
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Hi My Fellow Positive Peeps,
It took me awhile to read all 23 pages, but I knew I had to join this thread! This is the first time I have heard about similar nursing issues I had 23 - 27 years ago. None of my babies would nurse on my "bad" boob as though it wasn't producing much milk. All this time I thought I was a freak of nature! So when I got BC, I figured it was because I didn't actually nurse on that side. Although, one of my docs said that wouldn't cause it.
Now for my story... I found my lump a few months before I turned 50. I had a baseline mammo when I was 42, but no mammos since then. I went to my GYN and he said he didn't think it was BC, but since I needed a mammo, he sent me for one. It seems that out of all the doctors I saw starting with the surgeon, none of them gave me options, and I was too ignorant to know I had any. The surgeon said I needed a lumpectomy and radiation. When I went to the oncologist to talk to him about what I thought was going to be radiation tx, he started talking about chemo, and I said, "I am not having chemo!" He looked at me like I was stupid, shoved the report in my face, and underlined with a red pen the word "invasive". So I had a PET scan and MUGA scan. My baseline ejection fraction (EF) was 55, which I was told was good as long as it was over 50. After 4 rounds of AC, my EF was 50. So I started TH. The neuropathy started with the 1st treatment. Both the onc and his nurse said, "It's too soon for that!" Like I would make that up. Eventually, the pain in my fingers was so bad that after 8 weekly treatments I told my onc, "If I can't type, I can't work, and if I can't work, I can't pay you." I had tried gabapentin, but it didn't help. So I continued on with weekly Herceptin infusions. When I went in for #12, I had a fever and was having a hard time breathing. As the nurse was about to hook me up, my mom said, "Don't you think you should mention how you are feeling?" Needless to say, I was sent to the hospital and was eventually diagnosed with pneumonia and congestive heart failure. My EF was now down to 30. I was in ICU for 5 days, and 11 days total in the hospital. I honestly thought I was going to die on day 2 before they knew what was wrong. Having pneumonia along with the CHF complicated everything, so they weren't sure what was wrong. I was under the care of an infectious disease specialist who was controlling the cardiologist, pulmonologist and oncologist. I had a bronchoscopy in ICU and that was, by far, the worst procedure I have had to date!
After I complained to my primary care doctor that I wasn't happy with my onc's attitude or follow-up care, he suggested I switch. My new onc said, "AC is not the standard of care here anymore. I would have given you TCH." I also have osteoporosis from chemo and get an infusion of Reclast once a year. I will never be able to take an AI now.
During the middle of radiation, my entire body started stinging whenever I got hot, and it wouldn't go away unless I cooled down. Every doctor I saw said they had never heard of that, and I saw a lot of doctors. It was so painful, for a whole year! Then it went away, all by itself. As far as I can tell, I had damaged sweat glands from the chemo or radiation, because when the stinging stopped, I realized that i was now producing sweat when I got hot and that hadn't happened when I was stinging. (yes, I am a freak of nature.)
I begged to have my port removed after having no tx for 10 months. I thought it was a jinx keeping it when I didn't need it. My onc wanted to keep it in, but I won that battle.
So I didn't finish Taxol or Herceptin, but at least I have Tamoxifen. My ejection fraction is now up to 42, and I am on digoxin. I get an Echo every 6 months and hope my heart will continue to improve. Last September I had a treadmill stress test and the tech stopped it after 4 1/2 minutes and said, "Are you having chest pains?" Then when I saw my cardiologist he said, "Are you having chest pains?" They scared me to death. "No, should I?"
I had ocular migraines during chemo and was sent to specialist. He said those would go away after I stopped chemo, but that I also have some macular degeneration in my right eye from chemo. The gift that keeps on giving.
In December, I had another PET scan, and I am dancing with NED.
Sorry this was so long. Nice to meet all you positive people!
Juli
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Hi Juli - I am so glad you survived all that!!! and glad that you have joined us. ((((hugs)))))0
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What a wonderful story Juli! Great to read. I guess I have to ask my onc if I am triple positive. I know I am HER2 + and estrogen +, not sure about the last one. Just had my first AC treatment today. So far so good, but it's obviously early. Really hope it shrinks the tumors.
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Hi all:
Just found this blog and I too am a triple positive. Just talked to my insurance nurse who is GREAT and she says being ER/PR+ is a good thing but we all know the HER2+ not so good but at least we have the herceptin.
Julie: Interesting about the nursing and I have the opposite tale. My bad boob is the one my daughter nursed on the most (and for 2 years too - I know I'm nuts).
I'm going to be one of those cold caps girls too - I start chemo on Monday.
Nice to meet everyone and some I've already met over on the Cold Cap blog.
Arlene
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Good Afternoon Ladies,
I have been all over the internet trying to research this, and haven't found any conclusive information. I do know, that if anyone knows, it will be someone on this site!
Has anyone heard of Synergy products? Particularly the Mystica Juice (Acai) and Core Greens, I wonder if that is something we can safely take? Of course, I am concerned about tamoxifen interactons, as well as phytoestrogen content. Any input would be greatly appreciated, ladies.
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IsThisForReal you might post in the alternative section of the forum. There are some knowledgeable people over there. Just be sure to check with your onc before you take anything.
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