TRIPLE POSITIVE GROUP
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hopeful - I was also triple positive with a 2.6cm tumor and positive nodes. I was treated 15 years ago before the advent of Perjeta and Nerlynx, so the norm then was surgery first, chemo second, then radiation, if needed. I had a bilateral mastectomy with expanders, then implants. I was offered a lumpectomy with radiation initially, but mammography missed my tumor due to dense breasts, so I decided to do the mastectomies. I had DCIS and IDC in the right breast with cancerization of the lobules, and had atypical lobular dysplasia and atypical ductal dysplasia in the other breast. In hindsight it was the right decision, but at the time I was going on gut instinct and the realization that I don't image well. Ten years earlier I had a total hyst/ooph and despite imaging prior to surgery a 3cm mass was missed in the right ovary, so this was a trend. Because I was node positive on sentinel node biopsy I did have nodes removed that revealed additional cancer - this was prior to chemo. I did have 6 rounds of Taxotere, Carboplatin, and Herceptin, and finished the year with the additional rounds of Herceptin. Because I had great margins for the mastectomies, and had nodes removed I was told by both my breast surgeon and oncologist I did not need radiation. As soon as I was recovered from chemo I did start antihormonals, and continued on those for 7.5 years. At the five year point in taking antihormonals I had the Breast Cancer Index Test done on a sample from my original tumor which indicated that I was among the 10% of people tested who had a high risk of recurrence in years 5-10, but a low/no effectiveness from the antihormonals. My oncologist wanted me to stay on if I was tolerating them well, which I was, so I did take them for that additional 2.5 years. I eventually went off because I needed some dental surgery. The antihormonal meds drove my bone density lower so I needed Prolia injections every six months, and my maxillofacial surgeon wanted me off all of those meds before he would handle the dental surgery, so I went off with the blessing of my oncologist.
I also participated in a Her2+ recurrence prevention vaccine trial through Johns Hopkins, and was in the active arm of the trial, so I did receive the vaccine. All of the participants who received the vaccine were recurrence free but I believe this drug is currently still in trials - hopefully getting closer to becoming available. There were some internal company issues that slowed this process but last time I checked I think that had been resolved.
I wanted you to hear from someone who was this far out, who was treated before the advent of some of the newer drugs, and still had a good outcome. I did ice my hands and feet - I brought the ice myself but my center was all in favor of me doing this, they just didn't provide the ice. I also took some supplements that are suggested to help with neuropathy prevention - and was ok with my med onc, 10g of L-Glutamine powder dissolved in a cold non-acidic drink three times a day. I had neuropathy in fingertips and bottoms of feet, and oddly - my tongue! All of that resolved by 90 days post-chemo. I have no residual problems with that.
Can you think of any questions you have? This experience is like a firehose initially, and the learning curve is steep!
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Hi specialk- thank you so much for sharing your journey! I'm right at the beginning of the process so it's definitely overwhelming. I just had a similar experience with my mammogram missing this tumor. I am definitely leaning towards mascectomy too. How did you get the Breast Cancer Index test? That sounds like really useful data. I'm also excited to hear about the vaccine- crossing fingers it gets approved soon! Thank you again- I am feeling so much better after reading all of these posts.
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hopeful - the Breast Cancer Index test was ordered by my oncologist, but it is done when you have been taking the antihormonal medication for 5 years. The test is done to determine whether there may be benefit to continuing to take it for another 5 years. The understanding is that currently 5 years on either Tamoxifen or an aromatase inhibitor (used for post-menopausal or for women who are suppressing their ovarian function) is the standard of care for all patients who are ER+.
I too am hopeful that the vaccine I received is available sometime soon - it was an interesting experience to participate in, I wanted to receive anything and everything that I thought could be helpful personally, but I also wanted to help advance the science for those who I knew would come after me.
While this diagnosis is overwhelming it helps to remember that Herceptin, and the other drugs that followed, have been game changers for those who are triple pos, and have leveled the playing field. There is a lot to take in, but hang in there!
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Thank you!!
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Hi Hopeful, There is light at the end of the tunnel. I was diagnosed with triple negative breast cancer in 2018, I went through surgeries and chemo for a year. I have now surpassed my 5 year anniversary and am cancer free. It is a long haul but the good news is this type of cancer has had good results. My thoughts and prayers are with you….
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Hi Hopeful, I was diagnosed triple positive at age 47 in 2012. They pretty much threw the kitchen sink at me, and I am happy to say things are going well. I had no family history of breast cancer or really any cancer so it came as a real shock.
In addition to tumors in my breast 3cm for which I had a single mastectomy with reconstruction, sadly they also found 3 micromets that showed up in the sentinel node biopsy tissue analysis (they had thought I was clear). . If there had been just 2 micromets in the nodes they would have done nothing else surgery wise, but 3 was a ‘gray area” , and they opted to do an axillary lymph node dissection; it was probably my lowest point of this whole thing -after the shock and fear of the Dax- as it was an added and painful surgery and delayed chemo. I don’t even know if they do them anymore. Fortunately they didn’t find any more cancerous nodes or micromets but at the same time I felt that it was unnecessary. I then had 4 rounds of AC, the red devil which is mostly discontinued now, and after those 8 weeks, I had 12 weeks of taxol. The chemo was doable - I got tired towards the end though in general taxol wasn’t so bad. I lost my hair, eyebrows- that was the other lowest point and I opted for a wig. I then had 3 weeks of radiation. I think starting with taxol I also had herceptin and was on the Perjeta study- and to this day don’t know if I had it or not. I then went on Tamoxifen for 8 years and Arimadex for 2. In the first few years I had alternating mammos and MRIs every 6 months on the good side, but that has spread out to once a year diagnostic mammo though because I have dense tissue in the remaining breast I will probably get another MRI. I hate the scans and have terrible scanxiety and have often gotten callbacks but so far so good. My oncologist says I’m at low risk for contralateral, but I sometimes do think of having the good breast taken off. I will have to deal with the UNI implant someday.
Throughout the treatment I drove my kids to soccer and dance and we had a fun weekend away in NYC. I tried to be active- even a walk to the mailbox on tired days. And you find your rhythm of tired days and then days you almost feel normal. I found acupuncture the day after my treatment to be very helpful as well as salt/baking soda rinses to protect from mouth sores.
I am so grateful for being alive today and am grateful to my doctors and the wonderful nurses who made my treatments in a weird way joyful. They truly were my angels.
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Hello everyone! I am the op of this thread started way back in 2011!
This popped up in my email today for some reason (it hasn't done that it years), and since I don't believe in accidents, ha, thought I'd swing by and say I hope those of you currently in tx are doing well. Just glancing through the discussion it seems a bit has changed in the tx area.
I am about 14 years out? It may seem unbelievable right now, but I have to look at my journal to remember exactly when I went through tx! It goes from thinking about it all the time, the first year after, to thinking about it less and less. Until now, when I get sick, I don't even consider it might be related.
Here is something I wish I had during my tx journey. But, I have always believed there is no such thing as too much information so feel free to disregard it, especially since it may have already been mentioned here.
Several years back I did ancestery DNA with my family. Recently, I downloaded my dna from ancestry and uploaded it to AI, all 88 pages of it! AI discovered something my original genetics testing missed back in 2010, the CHEK 2 variant. It also was able to help me determine important information about my microbiome (which strains my dna type typically has, how to help it out after certain meds, etc). Really interesting stuff. I would have loved to have this info during treatment just to help me on the recovery side after chemo.Anyway, I'm off! My best to each one of you! MUAH!!💕
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tonlee - hey you! So happy to see your post - it has been a minute, right? Good to see you and hope you are doing well. I am not on the treatment threads much at this point because so much about TX has changed since we went through it, but if this thread pops up, or the TCH thread, I will click on and read. So happy I did today and got to see your post! I think about all of us from 2010 and 2011 all the time and wonder how people are doing.
Good to hear from you and cheers to our health!
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tonlee, I remember when you started the Triple Positive thread! It was a fabulous thread - I think we lost a lot when the website was redesigned etc. Almost 16 years out in June,
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