TRIPLE POSITIVE GROUP
Comments
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tonlee - great pics - glad you had such a fun time!
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Tonlee
Thanks for posting those pics. I feel like the biggest coward as i am a bit squeamish about heights and yet i used to love climbing as a girl!! You both look really well by the way.
liz
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tonlee--YOU ARE ONE WILD AND CRAZY GIRL!!!! LOVE IT!!!!
I would be afraid I would lose an implant!!! lol!!!
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Liz,
I'm not a fan of heights either to be honest. But I love the jump
Bucky, in a way this was a test....I figured if it damaged the TE or whatever, I just need to go flat because I can't baby any part of my body. I'm just not made that way. I might start out with good intentions, but in the end, lifestyle and habit get the best of me! Not to mention I am naturally clumsy. It's the biggest reason I didn't allow axilla dissection. Not only was my arm sunburned during this trip, but lots of deep scratches from the cliff walls and bleeding elbows from the tube.
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I just got a call from my oncologist. My Ef dropped to 45. My oncologist has put Herceptin on hold for 6 weeks and wants me on heart meds. I'm not sure about heart meds. I would like to see if I recover without it first. So even with the low dose of Herceptin my heart was effected as to why I tire out so easily and breathless at times. EF when started at 65...now 45. I only had 3 normal 3 weeks of herceptin and about 4 low dose infusions ... so not even a half of year of infusions.
So...for me I'm done with Herceptin unless down the line, I have a recurrence of cancer.
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evebarry - I'm so sorry. I hope the EF comes up for you over the next few weeks!0
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Eve
I am sorry about this drop in your EF. I have followed your posts and was hoping you would be able to carry on. We are our own best advocates and you had a sense that something was wrong. My gut feeling is that the studies will show that a shorter course is as effective as the standard 12 months. keep us up to date. My onco put me on Ramipril when my EF dropped to 47. I was supposed to stay on it until now when my last echo took place but I stopped it myself a month ago. I am sure it made my fatigue and heart palps worse.
Liz0 -
Ah Eve. That stinks. I'm sorry.
I'm on 5 mg of Lisinipril (sp?) ... it's the only heart med I can tolerate, and it makes me tired!
I tried to heal on my own without the meds with hawthorne, coq10/fish oil, but after 6 months and no improvement...I decided to add the Lisinipril. But I can't tolerate it in does higher than 5 mg...brings the blood pressure too low.
Hopefully your heart will bounce back on its own....the statistics are in your favor.
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Hi ladies. I've been off the radar for a while and forgive me for not reading all the pages I missed. I had my CT chest Tuesday and today found out that it is all clear still...NED!!!! My MO said she can't guarantee how long it will last but she has never seen a response like this! I am so thrilled! Ashla, I do have a very supportive family but we have all been through alot this year. My mother passed away in May and that loss just cut me to the core. You ladies have always been the one thread holding me together because I know you all feel what I have felt. Thanks for being there.
Now it's a matter of getting on with life and living! I am going to Mississippi to visit my brother and his family and we are all heading to Ft Walton Beach, FL for a week at the end of the month. I can hardly wait...and now I have something to celebrate!
I hope everyone had a wonderful 4th!
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kelloggs - yay for the NED report! I know this year has been tough for you - hope you have a wonderful time with your family!
eve - sorry about the drop in EF, hope you are feeling more energy soon.
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kelloggs - such wonderful news! Congrats!!! Enjoy your vacation - Ft. Walton Beach is beautiful!
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Kelly, Congrats on the FANTASTIC NEWS.. Now go enjoy your vacation and have a wonderful time...Hugs Eileen
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Kelloggs, so happy, enjoy the vacation.
Eve, you have not had an easy time of it on Herceptin, I hope your EF comes back quickly.0 -
Great news, Kellogg's!
Tonlee, that looks like fun. However, I am girls enough not to want to scrape up my elbows, etc. a nice clean jump going up a ladder would work just fine.
My oncology nurse at Wake Forest sent soem info regarding the trial that Specialk and I are in. Interesting.
Evidence that HER2 Peptide Vaccine Can
Delay Recurrence in Early Breast Cancer
BY RABIYA S. TUMA, PHD
“Up until now [nearly all of the cancer vaccines have] been tested in more advanced disease. From a limited number of examples, we are confirming, with data, that early is better than late. The question now will be ‘How early?’” –Olivera Flinn, MD
CHICAGO—A HER2 peptide pattern is important because it means a women immunized with AE37 plus
vaccine called AE37 triggers strong immune responses in pa- tients with early breast cancer,
researchers reported here at the American Association for Cancer Research Annual Meeting� Preliminary data also suggest the vaccine may prolong disease-free survival, although the difference between the vac- cine and control groups has not reached statistical significance in the randomized phase II trial (Abstract LB-218)�
In a previous phase I study, research- ers found that the AE37 peptide vaccine plus granulocyte-macrophage-stimulating factor (GM-CSF) was safe and triggered activation of CD4-positive T cells with anti-tumor activity� In the current study, in- vestigators randomly assigned 217 women with early breast cancer to either AE37 plus GM-CSF or GM-CSF alone� All patients had completed standard therapy and were disease-free at the time of enrollment, but were at high risk of recurrence�
vaccine might be useful in a larger pro- portion of patients with breast cancer than currently available drugs that inhibit HER2� “Whereas Herceptin is available only to about 20% of breast cancer pa- tients, this vaccine could be used in 50 to 60 percent of patients�”
When asked during a news conference at the meeting about the lack of statisti- cal significance in the disease-free survival data, she noted that the current follow- up is still relatively short� “We will follow these patients to three years after therapy, so we still have time to see if there is a significant difference�” Furthermore, the Phase III trial is set to enroll 700 patients, and is designed to detect difference in clin- ical outcomes�
GM-CSF were significantly more like to have a 5 mm or greater response compared with those who received GM-CSF alone (86% vs� 27%)� Additionally, women who received the vaccine were more likely to have a substantial drop in the number of regulatory T cells, compared with women in the control group� Because regulatory T cells suppress immune responses, the decline detected after immunization sug- gests that the vaccine may help overcome immune tolerance�
“Their results are more impressive than I expected,” said the news confer- ence’s moderator, Olivera Finn, PhD, Distinguished and Chair of Immunology at the University of Pittsburgh School of Medicine� “I am usually very pessimis- tic because, to me, even early disease is still cancer that may have been there for quite a while influencing the immune sys- tem� However, my expectations have been mostly theoretical since we are just now beginning to test vaccines in early disease�0 -
Thanks for sharing that fluff!
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Kelloggs
Such wonderful news.....wonderful, wonderful news! Even without this smack upside our heads of a BC dx...this is the way we should all live our lives. Enjoy every day...
I'm working on it.
There is great progress in BC research and it seems the HER pos treatments are leading the way...
Eve,
As others have stated, they are still uncertain as to how many Herceptin treatments are optimal. There is a study done in Finland that shows a much shorter treatment regime Is effective. It was small but it is at least 5 years old and they are probably following these women carefully. The oncology community is slow to change regimes and frankly I don't blame them.
Even before Herceptin most women survived. I have a friend who is 12 years out with NED.
We all know how you're feeling though. My post chemo lumpectomy was postponed due to a funky ekg. Every bump in this road we're on is cause for anxiety and outright fear and the heart issue is a big bump. As TonLee said, most women bounce back .
As I look at my body and think about all the changes both physical and mental that I've undergone in 8 months, I don't think anything is the same anymore.0 -
Congrats to Kellog!
soltantio my tumor was a total of 6-6.cm (invasive 5.5cm) and grade 3 but never traveled to the nodes but I was higly HER2+. It can happen that there is no nodal involvement even with HER2+. My BS thought for sure I would have micromets. For some reason I knew I was clear.
evebarry I bet your EF comes up. Just hope it's sooner rather than later.
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Hello my bestees! You've been busy while I've been away. Read most of the posts, but it's like almost 3 pages. Just doesn't feel right to try and respond to all the comments, so I'll just say;
if it was bad, I'm sorry
if it was good, I'm glad
if you're new, welcome
and if it hurts, take something to make it better.
I think that should cover it...oh, and if it was tasty, I want the recipe!
Going to the BGC soon, see you all later.
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This is not surprising to many of us but it has been proven in a ten year trial....
"
Breast cancer patients are prone to changes in hormone receptor and human epidermal growth factor receptor 2 (HER2) status throughout tumour progression that can significantly influence survival, new research shows.
The findings led the Swedish and US authors to suggest taking these unstable markers into account at relapse could help boost survival rates.Clinically Used Breast Cancer Markers Such as Estrogen Receptor, Progesterone Receptor, and Human Epidermal Growth Factor Receptor 2 Are Unstable Throughout Tumor Progression
- Linda Sofie Lindström⇓,
- Eva Karlsson,
- Ulla M. Wilking,
- Ulla Johansson,
- Johan Hartman,
- Elisabet Kerstin Lidbrink,
- Thomas Hatschek,
- Lambert Skoog and
- Jonas Bergh
+ Author Affiliations
- Linda Sofie Lindström, Eva Karlsson, Ulla M. Wilking, Johan Hartman, Elisabet Kerstin Lidbrink, Thomas Hatschek, Lambert Skoog, and Jonas Bergh, Cancer Center Karolinska, Radiumhemmet, Karolinska Institutet and Karolinska University Hospital; Ulla Johansson, Oncologic Center, Karolinska Institutet, Stockholm; Eva Karlsson, Karlstad Hospital, Karlstad, Sweden; Jonas Bergh, The Christie Hospital, Manchester University, and Paterson Institute, Manchester, United Kingdom.
- Corresponding author: Linda Sofie Lindström, MSc, PhD, Department of University of California at San Francisco, 1600 Divisadero St, 2nd Floor, Box 1710, San Francisco, CA 94115; e-mail: Linda.Lindstrom@ucsfmedctr.org.
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L.S.L. and E.K. contributed equally to this work.
Abstract
Purpose To investigate whether hormonal receptors and human epidermal growth factor receptor 2 (HER2) change throughout tumor progression, because this may alter patient management.
Patients And methods The study cohort included female patients with breast cancer in the Stockholm health care region who relapsed from January 1, 1997, to December 31, 2007. Either biochemical or immunohistochemical (IHC)/immunocytochemical (ICC) methods were used to determine estrogen receptor (ER), progesterone receptor (PR), and HER2 status, which was then confirmed by fluorescent in situ hybridization for IHC/ICC 2+ and 3+ status.
Results ER (459 patients), PR (430 patients), and HER2 (104 patients) from both primary tumor and relapse were assessed, revealing a change in 32.4% (McNemar's test P < .001), 40.7% (P < .001), and 14.5% (P = .44) of patients, respectively. Assessment of ER (119 patients), PR (116 patients), and HER2 (32 patients) with multiple (from two to six) consecutive relapses showed an alteration in 33.6%, 32.0%, and 15.7% of patients, respectively. A statistically significant differential overall survival related to intraindividual ER and PR status in primary tumor and relapse (log-rank P < .001) was noted. In addition, women with ER-positive primary tumors that changed to ER-negative tumors had a significant 48% increased risk of death (hazard ratio, 1.48; 95% CI, 1.08 to 2.05) compared with women with stable ER-positive tumors.
Conclusion Patients with breast cancer experience altered hormone receptor and HER2 status throughout tumor progression, possibly influenced by adjuvant therapies, which significantly influences survival. Hence, marker investigations at relapse may potentially improve patient management and survival."
http://jco.ascopubs.org/content/early/2012/06/18/JCO.2011.37.2482.abstract
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Vicki: lol!! Great catch-up summary! Me too!!!
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Beautiful pictures TonLee!!!! Thanks for sharing! One day I'll figure out how to do it and share as well.
GeeWiz...OMG I would've been scare shi*less if that was my son. It sounds like something he'd do though! LOL I was on Lake Tahoe 2 years ago (wow just a month before this all started) and I was on my Sister in law's boat and she had one of those inner-tube thingies. She showed me the sign for faster, slower, cut it etc. OMG I felt as if she was going a million miles per hour and I was scared! THEN I realized I had my Coach sunglasses on. I couldn't remember what the sign for "cut it" was and I was too scared to bail and lose my glasses. Too funny.
Scottie...TonLee was correct. They still do not now the accurate amount of time to give Herceptin. It could be 6 months, I don't know. I dont think they do either. I do know that despite my flawless heart scans, I still have issues of my heart feeling as it's pounding out of my chest (not faster just hard) Who know? It IS getting better and it's a good sign that yours got better when they stopped it the first time.
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Nora...my heart does the same thing sometimes. I am glad to hear that yours still does it and you finished in November (well, not glad for you, but glad it is something I need to worry about). Mine is starting to get better also but it does cause concern sometimes.
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Fluff....Yes, it still does it but it's thankfully less frequent. It used to happen several times per day. I think it's down to perhaps 5 times per week now. I'm glad yours are getting less frequent as well.....and I knew what you meant it's sort of like "Ohhh I'll be ok someone else knows what I'm talking about it and is ok too!!"
Right now I'm dealing with 200mg of fluconozole for my Valley Fever everyday since May 22. Sometimes it makes me itch soooooooo bad. Like right now. My toes itch like crazy. It's not an allergic reaction because it doesn't happen all the time and benedryl cream helps. I have my spinal tap tomorrow to make sure it's not in the spinal fluid. The infectious disease doctor on the 16th
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You poor thing. I have some great steroid cream from when I had my foob rash after the expanders were put back in. I thought I would go crazy from the itchiness.
Since I am on Tamoxifen, I am not supposed to take Benadryl, so my doc prescribed Hydroxyzine. That was a HUGE help, but I couldn't take it during the day, it made me so sleepy. It is some good stuff! I think it is an antihistamine with a little anti anxiety stuff thrown in.
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Kellogg.....Hurray for the NED. I am so pleased to hear that.
I hope time with family will help with the healing of your heart. I still have both parents. I cant even begin to imagine.
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I'm scheduled for my final reconstruction surgery July 31st. They are going to put a implant in my left breast to match the reconstructed implant breast. They are also going to take half the nipple off the left and place it on the right. Then there's the lipo suction to put fat grafting around the implant and to fill in the left breast to match the oversize full right breast.
The good news is I'm off Herceptin due to low EF at least for 6 wks. My blood pressure used to be so low they wondered how I managed to get out of bed. I don't know why with the low blood pressure, I had lots of energy. Now my blood pressure is on the high side...(I'm thin so it's not due to weight) so my oncologist wants me on heart meds.
I' find myself breathless when walking down the stairs. I fatigue easily. At times I can feel my heart pounding. With my heart issues, I'm not sure if I should go ahead with the July reconstruction surgery. Maybe I should wait for 6 wks. I'm going back and forth what to do. I would love to have it all over before school starts next September.
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I'm scheduled for my final reconstruction surgery in a few weeks . They are going to put a implant in my left breast to match the reconstructed implant breast. They are also going to take half the nipple off the left and place it on the right. Then there's the lipo suction to put fat grafting around the implant and to fill in the left breast to match the oversize full right breast.
The good news is I'm off Herceptin due to low EF at least for 6 wks. My blood pressure used to be so low they wondered how I managed to get out of bed. I don't know why with the low blood pressure, I had lots of energy. Now my blood pressure is on the high side...(I'm thin so it's not due to weight) so my oncologist wants me on heart meds.
I' find myself breathless when walking down the stairs. I fatigue easily. At times I can feel my heart pounding. With my heart issues, I'm not sure if I should go ahead with the July reconstruction surgery. Maybe I should wait for 6 wks. I'm going back and forth what to do. I would love to have it all over before school starts next September.
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evebarry they will not do the surgery until you are cleared by your doctor. I would let your PS know there might be an issue. I know I had to postpone my exchange for 6 weeks because I had shingles.0
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hi everyone
catching up on all the posts
its summer break and my kids are home so i read and post here and there...but i love having them home, it keeps my mind off things for the most part!
tonlee- great pics
kellogs -sooooo happy about your NED status, that is amazing!!!
hope everyone is enjoying summer, it's been almost a year for me since diagnosis and i can't believe the year its been, sometimes i can't believe it happened -does anyone feel like it is all just surreal?
on a purely girly note...my hairdresser gave me "bangs" last week . My hair is growing in longer in the back and sides so she put in some hair extensions in the front. So now we are calling them "fangs" -my fake bangs!
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Fangs - love it! Wish I had some! Thanks again ladies!
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