TRIPLE POSITIVE GROUP
Comments
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hap - here is some information about why joint pain happens with AI use and potential solutions:
https://academic.oup.com/annonc/article/24/6/1443/180703
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Welcome, Lsambo.
Despite joining the club you never wanted to join you will find that this is a wonderful group of women who will walk with you on this journey.Ask anything.
I have no specifics nor advice about your treatment options. We each hear the options and must make our own decisions.
You will want to find peace with your decision.
What I offer is this:
Take someone with you to write down what is said at your next appointment. Go with questions written down.
Ask your MO the plus / minus of this trial.
Ask the plus / minus of a conventional treatment plan.
Once home, make chart of the plus / minus for each treatment. Include in the plus / minus how you feel about both plans. Hang these charts where you can easily see them.Study your answers.
Make the decision that will give you the most peace as well as strength to complete the treatment.
I know that you are scared and feel lost. We are all scared especially in the beginning. It's been 23 days since you heard that you have cancer. It will take a while for that to sink in and for you to get over the shock of hearing "cancer." Go slow with absorbing all of this. Take loving care of yourself.
I hope Moody Blues responds to your comment "scared to death of chemo." She had a very powerful mental and emotional way to deal with chemo.
As with our treatment decisions, we also react to chemo differently. To some it can be easy and to others more challenging. Yes, deciding to take a chemo drug is a hard decision to make. What made my decision to take chemo was that I wanted to live.
Look around in BCO, and see if there is a group / forum for the trail you have been offered. There maybe other groups / forums you will like as well. Because you will have mastectomies, take a look at WhippetMoms' Implant forum as well as the Nipples forum.
Make sure you are doing some sort of physical activity and eating well. I believe that daily walking made my chemo easier to tolerate and get thru my body. Again, that was my decision and everyone is different.
Two years ago today (2 June 2016) my surgeon went looking for a missing breast marker. It was during that search that my cancers were discovered. 7 June 2016 I heard the words I never wanted to hear. Yet, I will tell you today that this journey has been powerful for me and one life journey I would not take back. I know that reads strange and it is my truth.
I will keep you in my prayers for peace and a successful journey.
Vicky
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Hi everybody. Just checking in to see how everybody is doing. How about a check in? I'll start.
It's been a year since I finished TCHP and 4 months since completing a year of Herceptin. Nine months ago, I started anastrozole. 11 months ago, I had surgery and immediate reconstruction. I'm still fighting an infection but things are slowly improving. There have been a few bumps in the road, in addition to all of the previously mentioned hurdles. A tumor scare turned out to be benign. I've had two minor surgeries to remove eyelashes growing into the eyelid instead of out. I had 2 dates with my dermatologist and liquid nitrogen to burn off sun spots. I am on month 5 of nerlynx which has not been a picnic. Wow. I can't believe I have gotten this far. When it rains it pours.
Other than the massive weight gain, fatigue, and bone pain from the AI, I'm am thinking that I am doing ok. I never had a serious illness before, so the constant doctor appointments have been a big part of that dreaded condition, "your new normal". I never thought about getting this far, but here I am. Thanks to you all for listening and helping me keep going. Everyday gets better.
Needless to say, this community has been a great source of support and information. I remain hopeful and confident in my team of doctors.
Enough about me. How is everyone doing?0 -
Lsambo, sorry you have to be here. DCIS and IDC are not necessarily treated in the same manner. If you have a 2 cm+ IDC (invasive ductile carcinoma) and DCIS then you may have multifocal disease and typically with HER2 + disease, you would do Herceptin and perjeta, along with chemo. Have you had surgery yet or just biopsies? If you fill out your diagnosis details, you can obtain more targeted information, links to consult to gain a better understanding. It's complicated and everyone's situation is different. Vicky gave you the best advice. Develop of complete understanding, it may take some work, get a second opinion if you are not confident, and then make your decisions. There is a lot of pressure initially to get started with treatment, but, as Vicky said, everyone is different. You want to make the best decision for you. Hang in there and post often and you will find additional support here. All the best
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Suburbs and All,
Glad that infection is improving, Suburbs. You have had a rough time with it. Yes, this community has been wonderful.
I will check in.
As I wrote in another post this is my 2 year anniversary. We took a Cuban Cigar (yes they are OK to bring into the USA now) to my Breast Surgeon along with a thank you note for saving my life. The original lesion, in the left breast, had clear margins and the marker was not there. Had he not gone looking for the missing breast marker, he would not have found the invasive cancer which eventually led to the discovery of a 4cm lobular carcinoma in the "healthy" right breast. Dang ... I got either Divine Intervention or just plain lucky.
I have 3 years, 9 months, 26 days left on Arimidex. I started taking it later in the morning so my one hot flash comes around 4:30 to 5:00 each morning. It is like a automatic clock. No need to set the alarm!
My Ortho Surgeon wants to do surgery on 2 trigger fingers. My Breast Surgeon said no way. He thinks the Arimidex is affecting the surgically altered tendon on my left hand. He is unsure what would happen if I have surgery while taking Arimidex. DH and I agree with him. The Ortho Surgeon did agree to 2 more steroid injections for the trigger fingers. So, I am due to see a Pain Specialist who will do future injections. Currently, I am in Physical Therapy for my hands and it is working really well!
I did start taking Prevagen. I think I can tell a difference and seem to be clearer in my thoughts.
I am happy with my new Oncologist. He is with the same practice as my first Oncologist. I go to a different facility to see the new one. I could not walk back into the first facility. I am sure it was all in my head but I did not want to go back. SpecialK also contributed this. Once I met her Oncology Team, DH and I knew what we were missing and wanted in a long term Oncologist relationship. I remain grateful SpecialK.
I am still exercising and keeping my weight down. We had the 9 timber vegetable beds removed from our yard and replaced them with 2 long brick beds. I was not going to replace timbers every 4 to 5 years of my remaining life. We got the garden in last week. Funny how some things I will do and other things are just not worth it. If anything, I have finally learned to do what makes me happy.
My hair is doing well. I am using Rosemary oil on my scalp and eyebrows. I shave very little for my legs and pluck whatever arm pit hair I have. For someone who was a hairy girl that shaved my legs every morning, I love not shaving so often. Chemo does have some great side effects at least for me!
If I have any complaints it is that I want fuller eyebrows and I wish my nails would grow. Small price to pay for having a second chance at life. I remind myself when I Iook at my nails that I will be one year out of treatment on 14 August 2018. Everything I have studied says it takes a full year out before I will see a what stays changed or not.
I stopped using deodorant when I started chemo. Well, I need it again! I think that is a good thing that my body is returning to what it once was.
My last procedure was 22 March when I got my nipples tattoos. I don't know how anyone can get a tattoo sleeve. It hurt! I just love my reconstruction ... every last bit of it. If it wasn't for the cancer getting news boobs that I like was just wonderful. They are perky. This is the first time in my 6 plus decades on the planet that I have a good body image.
I don't work as much as I once did. I don't miss the travel and the stress. DH is different as he misses that pace we once kept. I feel awful that this cancer caused the change for us. However, I fully believe as fat as we both were and the stress of 200 days a year of travel was slowly killing us. Now, I can live.
I remain grateful that my parents have passed and were not alive to see this cancer happen to me. I am grateful also to know who my true friends and family are. What a gift! Gone are the toxic, superficial people.
We are teaching a cooking class for rising 3rd - 6th graders at our church the last week of June. The recipes are a twist on 4th of July foods. I am excited about this. I always wanted to volunteer more and now I can.
Finally, I did not waste my cancer. I would not go back. I would not wish this on any one yet for me it was in many ways breast cancer was a gift.
Next check in is?
Vicky
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Great update, Vicky. Sounds like you are in a very good place. Just FYI— I’ve had success with Lilash (pre-BC) so ordered their Librow product. I’ve been using them for a while now and hope they help re-growth after I lose the lashes/brows.
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hap - no problem, it’s good info for all!
ingerp - you may find that with Taxol you don’t lose all brows and lashes, or even all hair. Everyone is different - I did not lose completely even on TCH. Rather unfairly, I had to shave my legs through chemo, just not a often.
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Yes, HapB, I am very blessed. I finally realized why my first marriage did not work. Nice guy but could not have handled breast cancer.
After the second right breast diagnosis, my mastectomies were moved from late August to early July 2016. That neccessiated DH rescheduling 2 weeks with a client. I only missed two days of work when I had chemo scheduled and flew to the client location the next day. I started Arimidex while on Herceptin in April 2017.
Here is how much of a workaholic I was. I asked DH not to reschedule those 2 weeks and I'd have a friend take me to surgery. Well, you know what hit the fan! DH asked if I was nuts and in no way was I doing this without him. I think I was in such shock and denial determined not to let BC change anything. I did not understand what was really happening. It took me months to grasp that my breasts were amputated. In the beginning I did not understand all that was happening. It took time.
Yes, I can and still do work. I find Arimidex a brutal drug but the one that will save my life. I have SEs with it. With exercise and an acceptance of this is life for now, I do well with it.
My problem is my heart is not in our work. I have no motivation to hustle like I once did. I have worked since I was 17 years old except for a few months between my doctorate and starting Federal Service.
I live modest life. I have yet to apply for social security and may continue to wait. I don't know. I will really be pissed off if BC comes back and I do not get my social security.
There are other things I don't want to do. I once enjoyed all the stuff that goes with a nice yard. Now, I hire neighborhood teenagers to do the wedding and such.
I do like maintaining my home and no longer have a housekeeper. The only limit I have is using the large vacuum cleaner. I feel tension in my implants when I have tried to use it.
I don't know if I answered your question in this mini series novel I wrote. I think it is different for everyone. BC opened my eyes to so many things.
Vicky
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I saw my dermatologist yesterday. I asked her to remove my radiation tattoos. She said she had the technology to take them off, but that's not recommended. I asked why, and she said "well if the cancer comes back we need the previous markers". I dont know why...but that depressed me so much yesterday. I dont want to keep these stupid blue freckles. I want to be done. I dont want to keep.them just in case. Arghgg!!!
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Suburbs, I’m happy to hear you’re on the right track to healing.
Vicky congrats on your 2 year anniversary! Mine is in July.
I like the inspiring check ins so I’ll go next.
I wake up each day and thank God for this second chance at life! Cancer has truly changed my life for the better. My scars remind me of the fight that I won and all the amazing people I have met along the way. I am healthier than I’ve ever been, have tremendous joy in my life and have gotten rid of all the stressors that probably caused my cancer. I no longer rush through my day and actually take time to enjoy so many things I took for granted before.
I feel great despite the challenges I am currently battling from shoulder surgery and lymphedema. My shoulder is getting better each day and the LE is minimal thanks to my awesome PT. My hair is thick again and curlier than before although it’s still pretty dry. My skin is less dry too because I use lotion with essential oils that I made myself. Thanks to my retirement I am getting 8 hours of sleep a night which I think is contributing to both my physical and mental well being. I am struggling with weight although I am only a few pounds up from my last MO visit. I walk 4 miles a day and try to eat a plant based diet 5 days a week.
I have the best PS in the world and I love how my new body looks. The breast is heavy, probably because of the lymphedema. My stomach still feels weird from the DIEP but I’m getting used to it. I get my 3D tattoo in July. Then I have my annual visit with my MO in November. I can’t wait to see my doctors and thank them again for fixing my body. I am beyond grateful for the amazing medical team I have.
The only complaint I have is that my body aches are constant but they don’t prevent me from doing anything. I take my grandkids to a water park every summer and last year my stepdaughter said she couldn’t keep up with me! And that was only 3 months after my DIEP surgery. We have a small vineyard and 4 garden beds so that keeps me very active and helps me get plenty of Vitamin D.
This summer I will have my 3 grandkids every week for “Grandma’s Summer Camp”. We’ll be doing all kinds of fun activities around the state of WI. I’m so grateful to be around to enjoy my little sweeties. My husband and I will spend more time up at our cabin this year too; another activity that brings me serenity.
I have finally learned that we only have one life and each day is to be treasured. I wake up happy every day and don’t let negativity in my life, including those people that used to drag me down. I have a deep desire to help others and give back for all God has blessed me with. I have several volunteer opportunities lined up for fall and I’m so excited I have the time to do this now.
This community has been a life line for me. Thank you all for your ongoing support and inspiration. Life is great!
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That was mean of your dermatologist to say. She could have worded it differently or simply lied made up a reason.
Vicky
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What a wonderful story you write! Thank you for sharing and checking in.
You have a vineyard? Do you make wine?
Vicky
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Suburbs -- glad to hear your healing is coming along!
deni1661 -- you sound so upbeat, which is great!
vicky -- I envy you for your body positivity! I have 20 pounds I could do without -- does anyone need any extra?
HapB -- I hope that your next round with an AI is less debilitating.
Summer is officially underway with school out. My daughter will be looking after my sons for four hours in the morning so I can go to my office to work on some research projects. Then, I'll be back after lunch to take the boys to the pool.
I feel way less stressed now that I'm not teaching. But, I enjoy teaching. Physically, I feel good and am looking forward to swimming with my sons.
Congrats, all those with cancerversaries coming up. I'm almost four years from diagnosis myself.
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Tres - that was terribly mean of your dermatologist. Don't let the ignorance of others get you down. I can't believe what people say sometimes!
Vicky - your story and all your posts inspire me! You are such a positive and upbeat person. We do make wine! When we bought this property 7 years ago we knew nothing about growing grapes or making wine. I'm very proud of my husband and how much he has learned about managing our vines and making wine. I don't drink much anymore but I do enjoy a delicious glass of our St Pepin every now and then which is a cold climate white grape. My husband decided to get bees this year so we're in the honey business too.
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Here is a picture of our vineyard - we are very blessed to enjoy such a tranquil setting every day.
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SpecialK or anyone, I need your advice. I've been on Tamoxifen and goserelin since november 2017 - can I switch to AI at any time or is there any schedule saying one should be on Tamoxifen for a given period of time and then switch (I hope I make myself clear as English is not my mother tongue)? The second question - can we TP be on any AI or is there any nie that is dedicated for us? I was told that I should be on exemestane. The third question - if I can't take AI for any reason, can I go back to tamoxifen? Thank you for any reply.
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Tresjoli—I’m pretty sure the rads markers fade pretty quickly. I have no idea where mine were any more.
Deni—love that pic!
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Deni. Love your attitude, what an inspiration. Exactly what I needed today
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unfortunately I'm so pale they are like electric blue beacons on my body, and I cant wear a v neck anymore because they show :-(
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kasia - the studies have looked at two years of Tamoxifen and then a switch to AI, but there is nothing stopping you from making the switch at any time. Arimidex (anastrazole) has been used longer and has the same basic mechanism as Femara (letrozole), my MO favors Femara (letrozole). Aromasin (exemestane), which has a steroidal component, was studied combined with ovarian suppression) for younger women and found to be superior to Tamoxifen, link below. And, yes, you can switch back. Your English is great - no worries!
http://www.ibcsg.org/News/Pages/PRESSRELEASETEXTandSOFTtrialsSABCS2017.aspx
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I love the picture! It is just beautiful. What a wonderful adventure to start something like growing grapes and making wine.
I find it kind to thank your doctors (amazing medical team) for your body. I believe that most doctors we encounter in the reconstruction world work to do their best.
Vicky
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Thank you SpecialK, I really appreciate your opinion.
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Vicky, congrats on your 2 year mark! Glad you are happy with your new body. I am patiently waiting for my exchange in July.
Deni, I would love to wake upti that every morning and have my coffee looking at that. Beautiful!
Tres, that was just mean. I can't see my tattoos from Rads. I honestly couldn't see them right after. Not sure how they seem them. What about getting a small flower tattooed on the one you can see. Cover it up? Not sure how you feel about tattoos...
I am coming up on a year from my last chemo, my friends are planning a "new boob" party for me. Knowing my friends I will probably be embarrassed by the decorations. But I will enjoy having everyone around.
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I'm happy for you Shelabela that the exchange process will be here for you soon! Yay!!! 👏 I'm adjusting to my implants (I had direct implants after BMX in March) I'm pleased with the job my PS did. I'm the same size but better! Lol....I'm also doing fine with the H/P phase, thank you for your encouragement prior.
Deni, wow, what a view! My husband is from MN and I've always thought WI was gorgeous but I didn't know you could have a vineyard there, that's such a blessing.
Tres, sorry that person was insensitive. It's another punch in the gut when people say things like that. I hate it when some imply we are in denial when we are simply choosing to live our lives looking forward to the future instead of sitting around wringing our hands, preparing plan B. There's enough time to waste if that were to happen but why waste all the days it doesn't? I'm not letting Cancer steal my peace of mind after all it's stolen already! I say find someone who will do it!!! It's your body.......
On that note, my oldest granddaughter's graduation was yesterday. Her little sister took this video. I'm going to try to live with this much happy enthusiasm as these young graduates!!! Here's to living with hope, joy and peace!!!
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OK, Nana (me) is not that good at posting videos apparently! But you can imagine, 500+ energetic, happy, graduates throwing their caps in the air, whooping and celebrating all their hard work! Thunderous applause for all.
We should all feel that way everyday, we've invested so much in this battle and we should celebrate every day and applaud ourselves!!!!
Congratulations Vicky, and everyone who has given this disease a black eye by getting up everyday and living it to the best of our ability, no matter where we are on this journey!
👏👏👏
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Thanks Hap for that interesting link. I like that Researchers are looking for ways to de-escalate treatment. According to the article, 70% of newly diagnosed women can forego Chemotherapy and they owe a big thank you to the women who participated in the TAILOR trial.
The downside is that in skipping chemo, they still need to do endocrine therapy. Which, as some of us know, has its own set of potential side effects for the women taking this therapy.
So, the women that could skip chemo and just do endocrine therapy would meet the following criteria:
- 1.Early Stage Breast Cancer tumors measuring 1 to 5 centimeters – Node Negative
- 2.Sensitive to Estrogen
- 3.TEST NEGATIVE FOR HER2
- 4.Oncotype Score of 11 to 25
I am also going to quote the article verbatim on a note of caution: "But Dr. Sparano and Dr. Mayer added a note of caution: The data indicated that some women 50 and younger might benefit from chemo even if gene-test results indicate otherwise. "
We triple positives are not included because of criteria no. 3.
More interesting to us triple positives is the trial that Deni1661 is doing in which smaller HER2 tumors are being treated without chemo and doing just Herceptin, Perjeta and Endocrine Therapy when appropriate. So, thank you Deni for participating in that trial.
My general surgeon kept asking me why I was doing chemo with my own T1b tumor. Hello, because it was HER2. I saw two MO's and two RO's to come up with my treatment plan. I really wanted to only do Herceptin but the first MO said that it would irresponsible of him to allow that without Chemotherapy (He was even talking about AC-T as a possibility – and I was all like "heck no!") I was too scared to push for Herceptin only.
If I had been offered the trial that Deni is on, I would have jumped on it so fast! So you go, Deni girl!
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Just want to reiterate for anyone new reading along that the TailorX study results do not apply to Her2+ patients, so while great news for those with intermediate OncotyoeDx scores who are ER+ and Her2-, doesn’t change anything for us.
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Hap, I think you are correct about the recommendation of endocrine therapy for hormone positive patients, regardless of whether chemo is recommended or not. I hope no one thought I was implying otherwise. I also apologize if I confused anyone on the whether this new recommendation included Her2 positive patients. It does not. Sorry for any confusion.
Hap, I think if I had pushed it, and refused chemo, I could have probably gotten just Herceptin. I also think instead of TCHP, I could have insisted on Taxol with Herceptin and Perjeta. I asked my MO about that later. And she said at the time, the data was not mature enough for her to feel comfortable offering it. Had I done my own research and felt comfortable with that choice, I think my MO would have gone along with the request.
There is just so much thrown at you when you are first diagnosed and you are in so much shock, it is definitely hard to make the decisions we have to make. By the time I realized that the current thinking was to do neo-adjuvant therapy first then surgery, it was already too late for me to make that decision. Finding this forum has been very helpful. Unfortunately, I did not find this website or forum in time to make more informed decisions in the beginning. But it is such a valuable resource with such wonderful support and sharing. It has been a lifeline.
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TailorX is specifically looking at the genomic test OncotypeDx, with a determination of whether those with the dreaded intermediate score could safely skip chemo. Inherent in the score from this test is the assumption that patients will receive anti-hormonal therapy - it is factored in as part of the score. If you forego it, the score roughly doubles, which would put a number of patients with an intermediate score into the high score range. As far as funding of this study by the pharmaceutical industry - why would they fund a study like this? It doesn't involve a drug, it involves a test.
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To me, the drug maker has a responsibility to bring a safe and effective drug to the market, having met the burden of proof that the FDA imposes. This is what our current governmental regulatory system requires. Trials are designed with a specific patient population in mind, often gearing new drugs toward those with more advanced disease, then other studies funded by non-pharmaceutical sources refine those patient populations to include those with earlier stage disease. Specific to breast cancer, this is how a number of chemo regimens have been developed, how Herceptin came to be available for early stage patients, and how drugs for other kinds of cancer are found to work for breast cancer too - like Keytruda used for breast cancer when it was initially developed for lung cancer. The process of bringing drugs to the market is expensive, and fraught with failure. To ask drug companies to go beyond what is already required to determine who might be over treated by an approved drug is an idealized concept that likely won't happen. Government agencies, like NIH - who funded TailorX - are more well suited to this. Our government also has a dog in the TailorX fight, eliminating chemo for a number of Medicare recipients saves money - age is a breast cancer risk factor.
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