Stage 2 Sisters Club
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If any of you who live nearby want to meet I am game. I was thrilled to meet a bco member recently.
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I'm in Molly! Anyone else in SoCal interested in a meet-up? We could do lunch or a walk or anything in between. We are about 120 miles from each other... here/what would you like to do? If Ruth were here, she would recommend a Zumba class, lol. Hugs, Nisa
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I would only recommend a physical activity so that we could eat more!!!!
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I am up for eating and walking!
Octogirl
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Eating and walking sound good to me! What works for everyone. How spread out are we?
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I'm sad, I wish I lived in California!!!
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Kim, come down to Portland this summer - we can do a hike in the Gorge or spend an afternoon at Powell's Bookstore.
Or perhaps we could do a meet up on the Coast - I know at least one other BCO member (not stage 2) who lives in the state and is great company.
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Kimmer and Hopeful - we can always Skype for now and one day plan a BCO weekend in Vegas or even beautiful Oregon -in summer time. Ruth - your name on top of guest list no matter what plan is!
If people don't want to advertise details of locations, please PM me and I'm happy to coordinate. Are we all within 40-50 mile drive from say Laguna Beach? Is there a preference for weekday or weekend?
Hugs and good weekend to all, and especially for those in active treatment.0 -
I am in the Pasadena area. I could probably do either if I have time to plan.
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wow, a vegas trip would be fun!!!
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and yes hopeful, a trip south to Oregon would be fun
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If anyone is interested in a trip to San Antonio in the fall, check out the Let's Post Our Daily Exercise thread for more information.
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Nisa, how are you doing??
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Molly - Thank you for asking. Sorry for slow response. I'm feeling ok about upcoming PET. Having a very busy work week is such a distraction as well.
Ruth - I'm excited about the possibility of a grand time in San Antonio with BCO friends! Thank you for inviting and coordinating.
All - please go visit the thread where details are discussed. You can choose one day/few/all days depending on your schedule. I will likely be there 21-24.
MaryJane and SpecialK, ya hear?! 😊
Hugs to all, Nisa0 -
Nisa - I will look into maybe just the weekend... My daughter is getting married in November, which we aren't entirely enthusiastic about, but will be supportive regardless. I am not sure of all the details, but it will be in CA in November, which I think we may tie into a long weekend in Vegas. If I don't make San Antonio - maybe we can meet in Vegas? I would say I'd find you in CA, but there will be a group of us making the drive to & from Vegas together to the wedding, so I don't know if that would be feasible.
I really want to meet you wonderful ladies... I will check the airfare and maybe just sneak out for the weekend!!!!!!!!!
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Withering away - help please
Hi there,
I have stage 2a and post my bi-lat mast. I just finished 4 rounds of AC and then 12 weekly doses of taxol in combination with herceptin and perjeta. This last combination of taxol herceptin and perjeta has really taken a toll on my body I can barely eat and have lost soon much weight! I have had chronic diareah and the oncologist want to continue with herceptin and perjeta every 3 weeks for a year. I am fearful that I will never be able to eat again as I am so weak. Please let me know if anyone else out there has gone through this and will I ever heal and eat before I disappear I am a petite Person to begin there is not much left.
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Hi June15 - So sorry to hear you are hurting. I have no experience with Perjeta and Herceptin but do know many oncologists think highly of them, as in miracle drugs for Her+. I follow a CA blogger who has frequently talked about these drugs. Her name is Ann Silberman and you can find her under "breast cancer...but doctor, I hate pink." There must also be some threads here that discuss these issues. Since you started them recently, it is my hope that this represents a short period of adjustment until all those SEs finally stop. However, if you haven't already, my suggestion is to go for a second opinion. I did a number of them and Insurance paid for all of them.
There are lots of well-informed members of this forum that will likely jump in and offer ideas. Take a look at other threads and don't hesitate to post. We are here to help each other every step of the way. Hugs to you, and wishing you a full recovery soon!
MJ - where in CA is the wedding? It would be great if San Antonio were a choice. Let's talk more as we go. Plenty of time ahead.
Nisa0 -
June15, I am so sorry you are struggling. Here is a link to the HER2 Positive Forum where you might get some help. You can also check the active chemo thread.Chemo January 2016
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Are you done taxol? That can be nasty stuff. I don't know anything about perjeta or it's side effects. Herceptin doesn't generally cause horrible side effects (and is really important when you are HER2 positive). If you are done with the taxol part, I'd try to wait it out a couple weeks to see if you start feeling better. And, then if you don't, I would think about maybe not doing the perjeta (remember we are not doctors so take everything we say with a grain of salt). I would, for sure stick with the Hercepetin.
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June, since you are stage II, I wondering why they are prescribing perjeta at all. Here is a study from the BCO research pafes (As I understand it, Tykerb is a sister drug of Perjeta).
Herceptin Plus Tykerb After Surgery No Better Than Herceptin Alone for Early-Stage, HER2-Positive Disease
Treatment given to weaken and destroy breast cancer BEFORE surgery is called neoadjuvant treatment. Treatment before surgery isn't routinely used to treat early-stage breast cancer, but may be used if the cancer is large or aggressive.
Treatment given to kill any few cancer cells that might remain AFTER surgery and reduce the risk of the cancer coming back (recurrence) is called adjuvant treatment.
In 2012, results from the NeoALTTO trial found that giving both Herceptin (chemical name: trastuzumab) and Tykerb (chemical name: lapatinib) with the chemotherapy medicine Taxol (chemical name: paclitaxel) before surgery to treat early-stage or locally advanced HER2-positive breast cancer offered more benefits than giving only Herceptin and Taxol or only Tykerb and Taxol.
Because of these encouraging results, researchers wanted to know if giving both Herceptin and Tykerb after surgery to remove early-stage, HER2-positive breast cancer would offer more benefits than only Herceptin or only Tykerb after surgery.
A study, called the ALTTO trial, has found that women diagnosed with early-stage, HER2-positive breast cancer who were treated with both Herceptin and Tykerb after surgery did no better than women who were treated with only Herceptin after surgery. The women who were treated with both Herceptin and Tykerb also had more side effects.
The research was published online on Nov. 23, 2015 by the Journal of Clinical Oncology. Read the abstract of "Adjuvant Lapatinib and Trastuzumab for Early Human Epidermal Growth Factor Receptor 2-Positive Breast Cancer: Results From the Randomized Phase III Adjuvant Lapatinib and/or Trastuzumab Treatment Optimization Trial."
Martine Piccart-Gebhart, M.D., Ph.D., associate professor of oncology at the Universite Libre de Bruxelles and member of the Breastcancer.org Professional Advisory Board, is the lead author of the study. Two other Professional Advisory Board members, Jose Baselga, M.D., Ph.D., physician-in-chief and chief medical officer at Memorial Sloan Kettering Cancer Center, and Edith Perez, M.D., professor of medicine at the Mayo Clinic, are also authors.
HER2-positive breast cancers have too many copies of the HER2/neu gene, which make too much of the HER2 protein. HER2-positive breast cancers tend to be more aggressive than HER2-negative cancers. Herceptin and Tykerb are targeted therapies that fight against HER2-positive breast cancers by blocking the cancer cells' ability to receive growth signals.
Herceptin is given intravenously. Tykerb is a pill taken by mouth.
In the ALTTO trial, 8,381 women from 44 countries diagnosed with early-stage, HER2-positive breast cancer that had been surgically removed were randomly assigned to get one of four anti-HER2 targeted therapy treatments for a year after surgery:
- Herceptin alone
- Tykerb alone
- Herceptin for 12 weeks, a 6-week break, then 34 weeks of Tykerb
- Herceptin and Tykerb given at the same time
The women's doctors decided when they would get anti-HER2 therapies:
- after all chemotherapy was completed
- after anthracycline chemotherapy and at the same time as taxane chemotherapy
- at the same time as the chemotherapy combination of Taxotere (chemical name: docetaxel) and carboplatin (this chemotherapy regimen is anthracycline-free; heart problems can be a side effect of Herceptin, Tykerb, and anthracycline chemotherapy)
The women joined the study between 2007 and 2011 and were followed for about 4.5 years.
The researchers wanted to see if treatment with both Herceptin and Tykerb would improve disease-free survival. Disease-free survival is how long the women lived before the cancer came back.
In 2011, the researchers did an early analysis of results and found that women being treated with Tykerb alone had shorter disease-free survival than women being treated with Herceptin alone. Herceptin after surgery for early-stage, HER2-positive disease is the treatment standard. So because Tykerb alone after surgery wasn't as good as the standard, the researchers ended that treatment arm and women who had no recurrence were offered Herceptin alone.
The researchers found that women who were treated with Herceptin and Tykerb at the same time had slightly better disease-free survival than women treated with Herceptin alone. Women who were treated with Herceptin then Tykerb had an even smaller increase in disease-free survival compared to women treated with Herceptin alone.
Still, these differences weren't statistically significant, which means that they could have been due to chance instead of the difference in treatments.
Women who were treated with Tykerb had more side effects and more serious side effects than women who were treated only with Herceptin, including:
- diarrhea
- neutropenia (low white blood cell count)
- rash
- liver problems
Also, women who were treated with Tykerb and Herceptin at the same time were more likely than women in the other treatment groups to stop treatment early because of side effects.
Many doctors were eagerly waiting for the results of this study because they thought the outcome would be very positive. Unfortunately, the results were disappointing.
The researchers said that 1 year of Herceptin after surgery remains the standard of care for women diagnosed with early-stage, HER2-positive breast cancer.
If you've been diagnosed with early-stage, HER2-positive breast cancer, it's very likely that Herceptin will be part of your treatment plan after surgery. You and your doctor will consider the characteristics of the cancer, your unique situation, any other health issues you have, and your personal preferences when creating your treatment plan. Ask your doctor why Herceptin is or isn't recommended for you after surgery and how that decision was made. Together, you can decide on the best treatment plan for your unique situation.
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June, I'm sorry you are having such a very difficult time.I would strongly encourage you to have an open discussion with your oncologist about how miserable you are feeling and find out what adjustments may be helpful.
For what it's worth, I am on Herceptin as part of a clinical trial and have experienced onlythe most minimal side effects and I understand that this is very common. You may find that Herceptin alone is much easier on you, if your MO agrees, of course.0 -
June, you haven't given us the specifics of your diagnosis, but here are some more things I found about Perjeta on BCO (I bolded the words that make me ask question):
Perjeta can work in people with HER2-positive, metastatic breast cancer that hasn't been treated with Herceptin or chemotherapy yet.
Perjeta also can work before surgery in people with HER2-positive, early-stage (the cancer must be larger than 2 cm or cancer must be in the lymph nodes), inflammatory, or locally advanced-stage breast cancer with a high risk of metastasizing or becoming fatal.
The most common side effects of Perjeta are:
diarrhea
hair loss
low white blood cell count (neutropenia)
nausea
fatigue
rash
peripheral neuropathy (numbness, tingling or burning in the hands and feet)
Here are my questions: You are Stage II, so the Stage IV and locally advanced parts of the statement don't apply to you; so, have you not had surgery yet? Do you have inflammatory cancer? If you have had surgery and it is not inflammatory then you should have a discussion with your oncologist as to why he/she added Perjeta to your treatment plan. (There may be a very good reason, but I definitely would want to know what it is!)
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It looks like she's getting support in the HER2+ forum.
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Good!
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just stopped in the ask my sisters for a few prayers today... My son is taking his IL Funeral Director Board Exams as we speak!!!!!! Hopefully he passes on the 1st try! Fingers crossed!!! Thank
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Praying and fingers crossed!!
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It s 8:45am in CA so hoping my good vibes for the exam are traveling fast enough to IL to reach your kid during the Emanuel! He must have a special soul to be willing to serve families in crisis. I hope he inherited his mom's happy disposition and sense of humor to help him cope with the demands of the job. He will have some stories to share at parties!
Hugs to you momma MJ - our kids' successes are ours too. Start prepping some celebration for when he gets home!0 -
I have no idea how the word "exam" became "Emanuel" in my post! But maybe it is a sign that I should not read and write from bed. I am now thinking you will have a choice of limousines to ride on. Please give your BCO sisters a ride - lol!
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HE PASSED!!!!!!!! Thank you for your thoughts & prayers!! They worked! And they took the super highway from CA to IL!!!
He is a wonderful young man and has really grown & matured in these studies and his job at a family run funeral home. It takes a very special person to do this - for sure!! And yes, he very much has his Mama's personality....lucky guy!!
Thanks again & we will definitely travel in style when one of the get togethers are in Chicago!!!
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Congratulations to him, and you too mjs! I'm thinking you had quite a bit to do with how well he turned out!
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