TRIPLE POSITIVE GROUP

Homemadesalsa

SpecialK, pop me a PM and I'll pass on my contact info. My husband is a builder here. Yes, we will be retiring here- it's the only house we own, haha. Hope she's ok with winter- it's winter here from Nov to April for sure, and can snow any month.

PoseyGirl

congrats on being done chemo, Homemade...that is a huge milestone.

SpecialK, thanks. I am seeing a Rheumatologist in a few weeks and will start there. I think if the spot were autoimmune related, it would likely be more than one or larger. But you never know. I have to try and put this out of my mind for awhile. I talked to a nurse yesterday who said that follow ups on mri's are very normal and that my MO is being diligent. She said this is why they don't like to do scans all the time...things show up and then lead to anxiety and more scans...In the meantime, I wish I could explain my dizziness. The nerve stuff is quiet, but I can tell it’s under the surface if that makes sense.

Ok. ANOTHER question. Have any of you post menopausal ladies had yellow vaginal discharge? There is no odour associated. I’ve had it a few times this week. I understand that discharge can happen due to thinning of the walls, but yellow is more likely infection. But there’s no foul smell...experience?

I feel like a mess with one thing after another. It then makes my anxiety spike and I feel like I’m a ticking time bomb...;(

PoseyGirl

thanks, Hap, I will. I thought discharge was more of a Tamoxifen side effect. I’ll go look. I always feel hesitant to chalk things up to the AI since I started on it a year ago..

KasiaK

Special, I have one more herceptin to go and this is going to be next Monday. I'm on Tamoxifen and zoladex but I'd like to change it to Aromasin plus zoladex - my onc was reluctant at the beginning but I guess she changed her mind - I need to ask at my herceptin appointment.

SpecialK

posey - I agree that the discharge thing seems to be linked more closely to Tamoxifen, and less likely that dizziness at this point less attributed to AI drugs, but if the manufacturer has changed it is possible.

kasia - I would have the Aromasin conversation with your onc, better performance than Tamoxifen.

whywhy

SpecialK - follow up on the topic on tamoxifen. My onc says although AI is slighter better, but he worries about my bone density down the line. So he wants me to use tamoxifen. My bone density result came back mostly normal (although neck T-score -1.3). Anything to help with bone density if on AI? Thanks!

ElaineTherese

whywhy,

My AI (Aromasin) gave me osteoporosis, so MO first prescribed Fosamax and then Prolia. I also take the generic equivalent of Caltrate. I'm hoping that Prolia helps me regain my bone density.

SpecialK

whywhy - as ET says above, many oncologists use bone builders, oral bisphosphonates like Actonel, Fosamax, or Boniva, or IV like Reclast, or monoclonal antibody drugs like Prolia to help their AI patients with bone density. I was osteopenic prior to diagnosis with breast cancer due a total hysterectomy/oophorectomy at 45, pre-menopausal. I had been stable for about 10 years and not on meds since I couldn't tolerate the oral ones due to gastro-esophageal repair surgery many years ago. I had a good density baseline due to a DEXA scan done same day as diagnostic breast workup. Chemo and six months of Femara put me on the brink of osteoporosis. I started on Prolia in 2012 and it reversed my density decline back to a normal measurement. Many oncologists use bone builders for osteopenic patients as there is also a demonstrated benefit in preventing bone metastasis using this methodology. Are you post-meno? If so, Tamoxifen can help build bone for some, but does not seem to have this effect if you are pre-menopausal.

SpecialK

hap -

http://www.breastcancer.org/research-news/prolia-reduces-recurrence-risk-for-some

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4449698/

Edited to remove the Medscape references since they require a log-in to view in a link.

SpecialK

hap - yes, Prolia (denosumab) is the drug referred to. The article from this site is about Prolia, and see #5 in the other link

whywhy

SpecialK, ET - Thank you for the information. I am pre-menopausal now but have oophorectomy scheduled. I'll ask my onc if I can have AI and Prolia after the surgery.

Anonymous

I have gotten Prolia shots. It brought my density back to normal. Just had my bone density and it was normal again. I see my oncologist at the end of June and it will be interesting to see if she orders it. I actually havent had a shot since last July. I missed my year end one when my other oncologist was retiring.

I didn't really have any noticeable side effects, although joint pain is one, and since I already have joint pain, it would be hard to know what was causing it.

The oral one that I tried first really messed up my stomach.

deni1661

My one and only DEXA scan that I had last November indicated osteopenia. My MO did not put me on anything - should I be concerned? My body aches all the time so how would I know if the osteopenia is getting worse or it’s from the AI. I don’t see my MO until late November and I’ll get another bone scan then. I’m not familiar with osteopenia or how quickly the bones can deteriorate?

deni1661

Homemade and Kaisa - congrats!

On the weight gain topic - I can keep the weight off only if I stick to an all plant diet and sometimes that doesn't do it either. I walk 4 miles every day and am quite active so I'm wondering if the AI is the cause of my weight struggles. It's so frustrating!

Does the potential for weight gain increase the longer you’re on the AI? I’ve been on mine for almost 2 years.

Lsambo

Hello..I was diagnosed on May 11, 2018 with stage 2 triple positive DCIS and invasive DCIS with a 2.1cm mass in my right breast. No lymph node involvement. My treatment options are herceptin in addition to either chemo or hormone therapy and full mastectomy with radiation. This is all pretty overwhelming and has all been thrown at me in the last 2 weeks. I have never had cancer before and am scared to death of chemo. How well does the hormone therapy work and is it tolerated well? My doc want me to do the Paltan clinical trial with letrozole, trastuzumab and palbociclib. In addition to goserelin since I am still pre-menopausal at age 42. All the while taking the herceptin. It is my understanding that palbociclib is a chemo pill. Is anyone else participating in this trial? I have never had to take any medication for anything so this is really scary and I feel lost. Thank you to anyone who can shed some light on things for me as I am BRAND new to ALL of this.

ElaineTherese

Palbociclib is the generic name for Ibrance. Yes, it is a pill, but the breast cancer patients who have the most experience with it are those who were diagnosed at Stage IV. You can check out their Ibrance thread for info on side effects. Why does your doctor think you are a good candidate for this trial?

Tresjoli2

so I was allergic to my chemo. Super allergic, and I had two allergic reactions before they switched me to abraxane. So I was on LOTS of steroids. There was no tapering. And then they kept me on steroids as a precaution when the switched chemo. That, then feeling sorry for myself, and tamoxifen did me in. I had had consecutive miscarriages, a rainbow baby who would not sleep, and then cancer all in 4 years time. I had never had a weight problem ever. But well, there you go. And now I cant seem to get it off.

hapa

Lsambo - I was briefly on a trial for neoaduvant Ibrance before they found out I was Her2+. I found the ibrance/goserelin/anastrozole combo I was on to be quite tolerable, though I was only on the Ibrance for a month. I seemed to be having a response to the Ibrance, but I still probably wouldn't do this trial instead of the chemo regimen that I'm on, simply because the chemo/herceptin combination has been hard to beat. I'll be amazed if Ibrance/herceptin outperforms chemo/herceptin.

Just from feeling my tumor, it felt like it shrank a little bit on the Ibrance/goserelin/anastrozole combo in the month I was on it. However, my tumor shrank considerably after my very first round of chemo/herceptin/perjeta, which is the current standard of care for Her2+ at my stage. As much as I hate going to chemo every three weeks, and as scary as chemo is, based on my personal experience I would pass on the trial.

However, everyone's cancer is different. I don't see your stats, what grade was your tumor? If it were a lower grade I might be more willing to do the trial but my tumor was grade 3 and my MO expected the chemo to be effective on it. Does your MO for some reason not expect chemo to be effective? If that is the case, that is a reason to consider the trial. Good luck with whatever you choose.

deni1661

Lsamo, sorry you have to join us but this is a wonderful place to find information, support and inspiration. The beginning of the cancer journey is quite overwhelming, especially as you try to sort through all the information and various opinions you may receive from many people. I found asking lots of questions of my medical team and trusting their expertise can bring you a level of peace as you go through treatment. The key is to find the best care possible and doctors that you trust unconditionally. You are stronger than you think and you will get through this. Please let us know how we can help.

I am in full support of clinical trials and participated in one myself, achieving the best response possible. If people didn't participate in clinical trials, how would new drugs or care options ever become available? I was initially offered the standard of care for triple positive (chemo/Herceptin/surgery/radiation/AI) but was opposed to doing chemo because of the damage it can cause healthy cells. I went for a second opinion to see if there were any other options available and I was then offered the opportunity to participate in a clinical trial. The trial was targeted therapy Herceptin and Perjeta every 3 weeks for 1 year plus an AI for 5 years. My MO explained the risks and benefits of the trial in great detail. Prior to accepting me in the trial, I was required to have a Mammaprint done which is a test to determine risk of recurrence. My risk for recurrence was low so I agreed to the trial. I was closely monitored and if at any time the tumor was growing or changing, my MO would switch me to standard care with chemo. I had an immediate response and by the 3rd month the tumors were no longer visible on MRI. I had a mastectomy after 6 months and then resumed treatments for another 6 months. Pathology indicated clear margins, lymph nodes, and a few single cancer cells in the breast tissue that was removed. I did not need radiation. I am very grateful for the results and positive experience I had with the clinical trial. Other women in the same trial had similar results. Note: I tolerated the HP well and most of my SEs have been from the AI. I am approaching year 2 of the AI and while the body aches are bothersome, I feel my quality of life is pretty good.

I want to make very clear that participating in a clinical trial is a personal choice and not for everyone. I felt very confident going into the trial that this was the best choice for me personally because of the deep trust I have for my MO. I also changed my lifestyle and diet to make my body as healthy as possible. I'm very happy with the outcome of my experience and would do it again in a heartbeat. If my cancer can help others in the future than I'm all in. Am I worried about recurrence because I didn't have chemo? Yes, sometimes that thought does cross my mind but I don't obsess over it. My faith is strong and I believe with all my heart that I will be cancer free forever (positive thinking is less stressful than constant worry!).

The bottom line is, your treatment plan is your choice. Ask questions, seek a second opinion if you're not sure and find peace with whatever you decide.

Feel free to send me a private message if you want more information about the trial I did.

Best wishes as you start your journey. Hugs

ElaineTherese

Lsamo,

I will just say that I admire breast cancer patients like deni1661 and SpecialK who participate in clinical trials. That's the only way we will get better (and hopefully less harmful) treatments. I did not have that opportunity, but it's certainly something to think about.

deni1661

Thanks Elaine and Hapb for the positive feedback!

I am on annual surveillance since my 3 month check up was good. Results from my trial were not posted last time I looked, which was maybe a month ago.

I think each trial offered provides unique opportunities to explore new and better care options. I respect everyone’s choice to participate or not, it is a deeply personal choice and one that you must be at peace with. My MO really provided extra attentive care which made me feel very confident with my choice!

SpecialK

hap - the drugs being used in the trial lsambo mentioned are all FDA approved drugs - letrozole, Ibrance and Herceptin. I believe this is a single arm trial, in that there is no control group, much like the ATP trial brought forward the regimen you were able to receive. I would also comment that the use of the word "many" to describe the number of those who discontinue anti-hormonals is somewhat prejudicial when the word "some" is used for the number that stay the course. I believe those words should be reversed, many stay the course, some discontinue.

SpecialK

hap - I would lean closer to the 40% number but I also think it is proportional to how advanced your breast cancer was. I think a number of patients, myself included, are willing to put up with side effects - and have found ways to mitigate them - because we fel that staying on these drugs is important to our continued survival. I think a significant number of people, not just women because men get breast cancer also and have to take anti-hormonal therapy - as do prostate cancer patients, discontinue as they get closer to the five year point if they have deleterious side effects. Northwestern University did a study in 2011 on this and found the number to be 36% of post-menopausal women stopped anti-hormonal therapy early. This study also found that those who didn't have chemo stayed on longer, those that were still recovering from chemo were more likely to quit, as they were not feeling as well at the start point. 10% of the patients quit at 2 years, the remainder quit between 2 and 4 years, so almost twice as many of the patients stayed on anti-hormonal therapy for the full five years.

SpecialK

Yes, there is a range of side effects from anti-hormonal therapy, but this is true for all aspects of breast cancer treatment - some do fine with chemo, others do not. Some breeze through surgery, others have a myriad of complications. Some are permanently affected by radiation, for others it is no big deal. For anti-hormonals that cause problematic side effects, I would advise changing manufacturers within the same drug, or changing drugs - this, somewhat surprisingly, can make a difference.

SpecialK

hap - we all get the same dosage because when the drug was trialed that was the amount that achieved the desired benchmark while still maintaining safety as established by the trial design. Because this class of drugs is for post-menopausal women or women receiving ovarian suppression, the assumption is that we already have much less circulating estrogen - but I don't think you can assume that age or body composition necessarily has bearing on how severely one experiences side effects, because the source of the estrogen being controlled is being produced by the enzymatic aromatization process of androgens into estrogen, not ovarian produced estrogen which is what menopause eliminates. Aromatase is found in muscle tissue, so this may account for why some experience muscle pain, and some generally experience joint pain from less estrogen, even those going through natural menopause without breast cancer.

SpecialK

Not sure I would agree with aromatase inhibitors being in their infancy - they have been looked at as a class of drugs in studies going back to the mid-80's. We get the same dose because that is how most drugs come through the trial process - what amount is safe while effective - and there was a variety of sizes and shapes and ages of people in the trial process that brought the drug to the market. We are all advised to take the same dose of Tylenol, whether we are old or young, large or small - 2 tablets every 4-6 hours, because it is the dose arrived at as most effective while being considered safe. There will always be some percentage of people who experience side effects too severe to continue taking any drug - from antibiotics to anti-convulsants. I can't take most antibiotics, there are no topical antibiotics that I can tolerate, and no adhesive can contact my skin without causing a blistering allergic reaction - literally none, even a band-aid. I don't think there will ever be drugs for any disease that are 100% tolerable.

SpecialK

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

coachvicky

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

Suburbs

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?

Suburbs

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