TRIPLE POSITIVE GROUP
Comments
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Friends, it's been a while since I have posted. It's so nice to see your posts and encouraging thoughts. Yesterday morning on my cancer side, I discovered a lymph node under my ear and very close to my jaw line is hard and tender. I'm 3 years out from original diagnoses. At first my heart sank, but my BS said to watch it for a few weeks. Anyone else have this happen
Bird
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For a few *weeks*...that is easy for the BS to say! Try to stay distracted, peaceful and patient...I know for me it would be hard but doable. Here is hoping for a very benign explanation for that node.
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As Tom Petty said, the waiting is the hardest part.
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Amen to that, BigPeaches.
Eagle Pharmacy, according to my friend, is out of name-brand Arimidex at this time. I find it interesting that a drug nobody's insurance covers is out of stock.
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Hi Jkeet
If you get mouth sores (I did) even though I gargled with baking soda every time I went to the bathroom and then some - Rx "Mary's Magic Mouth Wash" worked great for me. My Insurance wouldn't pay - but with coupons I paid about $45.00. well worth it. Some say it didn't work for them, but I hear that the drugstore makes it up and some have different ingredients. CVS did its magic. I also had a difficult time managing the Big D/ Big C (I'd rather have Diarrhea than Constipation) About the 3rd round I had it down to a fine art. Once I was on Herceptin only, I had no issues. I iced both my fingers and crunched on ice during Taxotere - the Infusion Center provided the Ice bags.
Totally agree with Cowgirl13 - take nausea meds Before you become nauseous. I'd set my alarm and take them around the clock.
I hear using plastic forks/spoon might help with the metallic taste. Best Of Luck!
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something really interesting happened. I had implant surgery 3 weeks ago, all went well, then I found 2 small lumps on the original cancer side, and it’s kind of painful. I went to the dr, they can feel the difference , but says it’s not distinct. I asked to order an ultrasound anyway although they say it might not be accurate because of the recent surgery. I went to my H+ P yesterday , and this morning, the site is not that painful at all and the lump is not that obvious, that makes me wonder was it recurrence and H+P is working? I have only one H+P left, will go to ultrasound tomorrow. I had 100% PCR after chemo.
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I had a similar experience. I noticed a lump during my radiation. Drs said it was the expander. Then when I had the exchange surgery, it was still there. So they wanted me to see my bs. My bs did an ultrasound and she says it’s a fat necrosis:))))
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timetobebrave70, that’s really good news, I will see what does the ultrasound say tomorrow.
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thank you everyone for the advice on how to get through chemo. I’m on day 11 post first cycleand finally feel fine. Do people feel just as bad once chemo is done and you’re only taking Herceptin and Perjeta or are the side effects the same?
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jkeet , H&P is a breeze compared to chemo. I had a few SE like a drippy nose and was a little tired the day after but I was able to get my life back - and felt really good. Most people do fine, you can make it through chemo and then start getting back to the new normal. Chemo is tough but remember we are here for you. Thinking of you. Hugs
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jkeet--I never did P but, yes--H was much easier than chemo but keep in mind it's not nothing. I was told to expect *no* SEs, but I definitely felt weird on H days and after several months started to feel kind of bad. It occurred to me I'd cut way back on my protein since finishing chemo, so from then on I made a point to eat red meat the two nights before H and I felt *much* better. I've come to be a big believer in protein, particularly when we're pumping chemicals into our system.
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Hi,
Is breast MRI generally done sometime between 4th and 5th cycles of chemo to check for progress? I do feel the size of the tumor has reduced but i can still feel hard mass when i squeeze out. Ideally all mass should melt away?
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I had an ultrasound after 3 cycles showed the tumor had significantly reduced in size, probably by about 75%, then after 6 cycles , before surgery, I had an MRI and they no longer saw it, after surgery pathology showed complete response
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I had a ultrasound after 4th cycle which showed both tumors had shrunk. I didn’t have anything after that but my mastectomy came back as PCR, no sign of any tumors and any signs of DCIS was also gone
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$ I found a couple of things that I found very interesting. An explanation of aromatase and study titled lThe what, why and how of aromatase inhibitors: hormonal agents for treatment and prevention of breast cancer". Here are the links.http://drplechner.com/learn/miscellaneous-articles/what-is-aromatase/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2228389/
The reason I found this interesting is I found out the 3 AI drugs treat aromatase differently and was wondering if one would be better than the other. Aromisin permanently disables aromatase enzymes when binding to them while Letrozole and Arimidex are AIs that only temporarily disabled aromatase enzymes. I’m going to ask my OC if it wouldn’t make sense to permanently disable aromatase enzymes. As a note, I think our bodies will continue to produce aromatase after we go off the AI but those enzymes that were bound could be either permanently effected or not depending on the frug you take. I’m sure I’m missing something but found this interesting
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MACTAZ - thanks for those articles! I would think permanent vs temporary would only really matter if you are missing doses or are stopping treatment. I don't know how long enzymes last in the body, but I do know that cells are making them and breaking them down all the time if everything is functioning normally. Let us know what your onc says.
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Will do hapa and your thoughts make sense. Identify see my Onc until November but it is on my list.
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Survival and chemotherapy success rates for various cancers
https://www.medicalnewstoday.com/articles/326031.p...
Interesting article.
Updated below.
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That's not very promissing. I try not to pay too much attention to numbers, I plan to outlive that.
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I have trouble discerning the information, BigPeaches, and I sent a copy to my doctor for his comments. I do not know the difference between Localized, Regional and Distant. Numbers are only that, and I apologize if it was not promising, I apologize for sharing.
It opened my eyes a little to the women I met having radiation for lung cancer. I get my infusion with a man who has stage IV lung cancer and he is quite a character. He takes and recommends organic sulfur, which I have now realized is MSM. I used to, in his words, blow him off, but started taking MSM with my hormone pill for joint pain and it helps! Even his doctor has changed her mind and appreciates the benefit he is having with organic sulfur.
Keep sharing that positivity, BigPeaches, and I apologize if sharing this brings anybody down. Lisa
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Big Peaches, my doctor sent me better statistics and a note:
"Better estimate for your breast cancer. This is the uk predict model."
This does not show data in the perjeta era.
6 deaths due to other causes
11 breast cancer related deaths
4 extra survivors due to trastuzumab
7 extra survivors due to chemotherapy
8 extra survivors due to hormone therapy
64 survivors with surgery alone
Treatments after Surgery
Selected treatments after surgery are:
Hormone Therapy
Chemotherapy (3rd generation)
Trastuzumab
Hormone Therapy
Hormone therapy, or endocrine therapy, involves a woman taking drugs to prevent the growth of tumour cells that are boosted by the hormone oestrogen. Drugs of this kind include tamoxifen (brand names include Nolvadex, Istabul, Valodex, and Soltamox) and aromatase inhibitors such as anastrozole, exemestane, and letrozole (brand names Arimidex, Aromasin, and Femara). [1]
Some hormone therapy drugs act by blocking the action of oestrogen on the cells and some work by lowering the amount of oestrogen in the body (NB hormone therapy for breast cancer is the opposite of hormone replacement therapy or HRT, which is taken by women to help INCREASE oestrogen levels to help deal with side-effects of the menopause).
Treatments usually have the potential to cause harm as well as benefit. It is important to weigh up the risks of potential harm against the potential benefits of treatment in order to reach a decision. Some may cause more harm than benefit to some people.
[1] Source: www.nhs.uk/news/cancer/breast-cancer-drugs-set-for-preventative-use/
www.breastcancer.org/treatment/hormonal/serms/tamoxifen
www.breastcancer.org/treatment/hormonal/aromatase_inhibitors
Chemotherapy
Chemotherapy uses drugs to weaken or kill cancer cells throughout the body. There are many different chemotherapy drugs which work on different kinds of tumour cell, and they are often given in combinations to maximise their effectiveness. The options in this web tool cover generic chemotherapy regimes used most commonly in England:
No chemotherapy at all
2nd gen is short for second-generation chemotherapy drug regimes such as FEC (fluorouracil, epirubicin and cyclophosphamide)
3rd gen is short for third-generation chemotherapy drug regimes that contain taxanes such as paclitaxel (Taxol) and docetaxel (Taxotere)
The definitions of the different chemotherapy regimes are found in the Early Breast Cancer Trialists' Collaborative Group paper 'Comparisons between different polychemotherapy regimens for early breast cancer: meta-analyses of long-term outcome among 100?000 women in 123 randomised trials', published in Lancet, 2012.
High cumulative dose anthracylcine regimen were shown in the EBCTCG 2012 analysis to be equivalent to taxane based regimen and should be regarded as third generation.
Treatments usually have the potential to cause harm as well as benefit. It is important to weigh up the risks of potential harm against the potential benefits of treatment in order to reach a decision. Some may cause more harm than benefit to some people.
Trastuzumab
Trastuzumab, often known by the trade name Herceptin, is a drug that specifically targets HER2 positive tumours.
Treatments usually have the potential to cause harm as well as benefit. It is important to weigh up the risks of potential harm against the potential benefits of treatment in order to reach a decision. Some may cause more harm than benefit to some people.0 -
Oh that's ok Lisa, I've seen it before, no worries
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missouricatlady - the three breast cancer classifications in this article are localized - in which is cancer confined to the breast only, regional - cancer in the breast and nodes, and distant - cancer that has spread outside of the region to bones/brain/lung/organs/other. It is important to note that this data is likely taken from SEER stats and means that all types of breast cancer subtypes are grouped together, regardless of level of aggressiveness. The first table shows which combinations of surgery/chemo/radiation that had been done by which stages. The survival chart shows that 61% of patients, at diagnosis, had cancer in the breast only, 32% had cancer in the breast and nodes, and 6% were diagnosed stage IV de novo. The corresponding five-year survival percentages were 99% for those with cancer in the breast only, 85% for those with breast and nodes, and 26% for those with distant metastasis.
When I put my numbers into Predict 2.0, the UK calculator, I am slightly better than the chart in the article suggests - my five year survival is 88%. I like the Predict calculator because it factors in Herceptin, whereas in the past Lifemath did not - Lifemath gives me 85%. As new treatments come along the calculators eventually add them in, so a new calculator will eventually include Perjeta.
Here are the links to both calculators:
Edited to add the most up to date version of Predict -
https://breast.predict.nhs.uk/tool
http://www.lifemath.net/cancer/breastcancer/condsurv/index.php
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hi guys! So one of my best friends has been diagnosed stage 2b er/pr- her2+ and is having her port installed tomorrow, and will start TCHP in 2 weeks.
I am putting together a "chemo care" kit to mail to her...dark nail polish for her nails, a cap to sleep in to keep her head warm, biotene mouth wash, aquaphor for her dry nose, hand cream...what were some of your favorite things to have during chemo that I can put in her goody basket? Thanks!
Pamela
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SpecialK, can I ask a question, I have looked at the predictor before but the thing that stumps me is the positive node question. Initially the ultrasound and MRI said no node involvement but the path report, after sentinel node removal, showed while no cancer cells there was scarring in one node which indicates cancer cells could have been present. I guess I’m not sure if I had node involvement but the path report might suggest there was. I don’t need anything else to worry about but I think it would be good to understand if there was a possibility that cells had migrated beyond the breast. My Onc and BS were not clear on this and didn’t seem to want to discuss this. I just want to understand, I know you can’t give me a definitive answer, I don’t think there are any when it comes to this, but just want to understand the possibilities, I’m very info driven.
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Hi Pamela, does she read or like puzzles? My friend brought me her kindle and gave me access to all her books, she also gave me a puzzle she made of a picture we took on one of our girls vacations. Not saying give her a kindle, but maybe some books or magazines. Wish her the best
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Hey Tresjolie! That is very thoughtful of you.
My suggestions are: pepto bismol and Imodium, mint tea and/or chamomile tea, a heating pad, miso soup (for belly aches - it helped me a ton), an extra soft bristled tooth brush, a cute hat or scarf (for hair loss), a drugstore gift card.
Wishing your friend the best of luck!
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tres - you might include these worksheets, I used them during chemo to help keep track of side effects. I printed a set for each infusion and then brought them with me to my follow ups with my MO so I had a clear recollection of what occurred at which point:
I had surgery first and definitely used this, but still continue to enjoy it - my husband got them for our bedside lamps:
I would include an insulated cup with a lid - I knocked my cup over a couple of times in a blur, lol! I could read magazine articles but had trouble with reading anything longer than that, so I think those are good. Also, Gin-Gin ginger candies are supposed to help with nausea. My TN friend who had AC-T said they helped her.
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mactaz - that is a quandary, and the issue with neoadjuvent treatment - staging is sometimes uncertain. I would have been incorrectly staged if I had done neoadjuvent treatment since my large positive node - which was not the sentinel - was missed by imaging and not at all palpable, and my sentinel only contained IST (isolated tumor cells) that would have likely been wiped out by chemo and I would have been declared node negative when I really wasn't. When possible, I advise trying to see if you can get a SNB done when the port is installed, but I know that isn't always possible. Where I live a number of breast surgeons do the port installs - possibly because my BS, who had been head of breast surgery at the NCI center for many years, trained everyone under him to do them. That makes it easier to have both done simultaneously, but I know interventional radiologists and/or vascular surgeons sometimes do ports. Have you run the calculator with both negative nodes and one positive? I think your docs are likely reluctant because they can't definitely say, but maybe average your two calculator results and call it good. The thing with a calculator is that it is an amalgam anyway - there are those with a good predictive result that will recur, and those with a more dire result that don't - so while they are informational, they are not individual to you as a study of one. If you have done the systemic treatment, including extended Perjeta, plus surgery that would have been the same for a node negative or node positive situation, that is all good. Did your docs discuss rads because of the scarring in the one node? That, along with anti-hormonals, would be the only additional risk reducing avenues currently available I believe. It is hard not to worry, but every day out from treatment helps.
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Am I the only person who gets vastly different results with predict vs. lifemath? My 15-year survival odds on predict are 50-50, while lifemath is putting them at more like 80%.
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