TRIPLE POSITIVE GROUP
Comments
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suburbs my MO also said no, no way. Said the upside benefit was tiny and the side effects were horrible.
On the depression topic, one I am far too familiar with, just remember if you are premenopausal and take tamoxifen, you have only three choices for antidepressants : Celexa, Effexor, and Lexapro. The others all interfere with your tamoxifen. Your only other choice if those don't work would be to go on an OS drug and take an AI.
I'm exploring the elavil angle. Took it for years when I was young. Most docs today don't know much about it so mine is researching it..
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Tresjoli2, I have been prescribed Mirtazapin Actavis, the active substance is mirtazapin. I checked the active substance in Celexa and Lexapro and tey contain citalopram. I got it from the psychiatrist in the clinic that treats me and when I asked her when can I stop she told me that I am going to need it while on Tamoxifen. Do you have any info on Tamoxifen interfering with another anti-depressives. I would really appreciate it.
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Suburbs. Nerlynx, I feel the same way Vicky does...unsure to pursue it or not. I think about it even though my MO said that the benefits weren't worth the severe side effects. I am going to ask my old MO after I am through with chemo, I want his thoughts on this as well.
Melanie
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Lita, you are so right about how keeping busy keeps the anxiety away. When dx'd I was working as a special ed teacher in a high school. I "pushed in" to algebra and English classes which were often boring. My mind had time to fill with all kinds of anxiety and worry.
This year I switched jobs. I now teach young students with autism. They are the BEST aniti-anxiety drug! My day is filled with dancing, singing, art activities, etc. No time to think about myself at all. I get a lot more movement in my day, too which is really helping the aches and pains to go away.
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meg2016 and kae_md99 - Is Mepitel prescription only and does it adhere to the wound? My skin is raw and peeling under my arm and the thought of having to peel off something stuck to it makes me cringe. It was bad enough with the bolus (sp?).
I did have my last radiation treatment today, so thankfully my skin can begin to heal. I'm just impatient, I guess. Your last radiation is like your last chemo... you want to celebrate but you're still dealing with all of the devastating effects to your body for days and sometimes weeks after.
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soxfan,it does not adhere to the wound. maybe ask your radiation onco about it? sorry for the side effects of radiation...
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Thanks kae_md99. I will!
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Thanks for the article, HapB.
I wish Cure had included the calculator.
Vicky
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soxfan, the Mepitel I have on is adhered very good. It's sticky on one side and stays put. Not sure about the peeling off part as I haven't removed any yet
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Make sure you are using the most up to date PREDICT UK model, the 2.0. Here is the link in live form:
http://www.predict.nhs.uk/predict_v2.0.html
Ladies, if you include a link you can make it live two ways. Either use the link box in the tool bar above the text box (the one that looks like a capsule shape, the one to the right of the rectangle with the right facing arrow), or hit the enter button after you paste the link and the link should turn color. This allows someone to just click on the link rather than copying and pasting to another window.
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HapB me too
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Hap - it's assuming mastectomy or it's equivalent, ergo lumpectomy plus radiation.
I thought the same 5% thing you are talking about when I first read the article but when I reread it I realized it's actually saying unless the patient's chance of living for five years is greater than 5%, adjuvant therapy isn't recommended.
Interesting. I just realized Predict doesn't factor in progesterone receptors in it calculation. I'm wondering how much that would change things.
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Hap - what I find even more disconcerting are the 10 year statisticsfor our age. Yikes!
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HapB Thanks for sharing, it is an interesting article. Makes a lot of sense.
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I am beyond happy about my treatment, even the taxol because I am still alive and doing well. Considering the size of my tumor I would most likely not be doing so well without the treatment. My heart goes out to those that are not so fortunate to live in countries that provide treatment. I am grateful for those who has gone before me. Some people prefer to go the alternate route, I think there is a forum dedicated for it here as well. There are plenty of people claiming chemo cause cancer to recur which in my humble opinion is a very dangerous claim. A friend of mine´s daughter, 22 years old, refused chemo and she passed away, perhaps she would still be here with chemo. Yes, it takes time and time to recover but it is not all bad. A new take on life can be a good thing. Keep up the treatment ladys, things will get better. Statistics are always a bit of a gamble, you might be in the unfortunate 1 % so I prefer to simply think chances are much higher for a long life with treatment than without.
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Thank you Kattis. I have said this before as well, I am grateful to be in a country where we have treatment. So very grateful that I have insurance and also that I live in the time where Herceptin is in place, prior to 2010, many HER2 ladies didn't survive 5 years.
Melanie
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True, very true, HapB. But Kattis and I had bigger tumors than you, and have a higher likelihood of recurrence/metastases. So, we will presumably gain greater advantages from treatment than you. Best wishes!
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hap - using my actual stats, with a 26mm tumor and positive nodes, with no therapy 69 out of 100 are alive at 5 years, 88 with therapy. At 10 years with no therapy 38 out of 100 are alive, 72 with it. I did not do any calculators prior to treatment, and did not discuss and percentages with my oncologist - I knew I was facing an uphill situation and so I have done all treatment that was available at the time, including extending anti-hormonal therapy beyond 5 years, and also participated in a vaccine trial once I finished Herceptin. I feel badly for those of you who have to make decisions about whether to endure treatment based on slim improvement percentages or co-morbidities.
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I think the difference treatment makes between Stage 1vs Stage 2 and 3 is astonishing - it really levels the playing field. But nobody really gets a homerun with BC, not even we early stagers with treatment.
I don't think we can ever truly understand how someone with a different stage/grade of BC feels, not completely.
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HapB, this is based on my stats (50 mm, with one node):
Five year survival
70 out of 100 women are alive at 5 years with no adjuvant therapy after surgery
An extra 8 out of 100 women treated are alive because of hormone therapy
An extra 15 out of 100 women treated are alive because of hormone therapy & chemotherapy
An extra 19 out of 100 women treated are alive because of hormone therapy, chemotherapy & Trastuzumab
Ten year survival
38 out of 100 women are alive at 10 years with no adjuvant therapy after surgery
An extra 13 out of 100 women treated are alive because of hormone therapy
An extra 26 out of 100 women treated are alive because of hormone therapy & chemotherapy
An extra 35 out of 100 women treated are alive because of hormone therapy, chemotherapy & Trastuzumab
As you can see, treatment makes a BIG difference for those of us diagnosed with Stage IIIA triple positive cancer!
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hapb - not at the 10 year point for either Elaine or myself - I am 2B and she is 3A, but our outcomes are almost identical. My 10 year point is coming up in 3 years, and I will be 64 years old - I would not want those 38 out of 100 odds for no treatment.
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hapb - thanks! I wish the same for you! The increase in the percentage of OS is dependent on clinical criteria. For you a negligible incentive allows you to discontinue should side effects become intolerable, but for me at 5 years the increase in OS is 8.1%, already by the wayside, at 10 years it is 12.9% - so it is significant. In addition to Mammaprint testing at the time of diagnosis which indicated a high recurrence rate based on the genomics of my tumor, I have also had Breast Cancer Index testing that conforms I am at high risk of recurrence. That knowledge keeps me putting that little pill in my mouth daily.
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specialK , did your insurance pay for the mammaprint ? it was not done on my tumor. i am thinking maybe because i am her2 positive anyway and recurrence is high
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hapb - I would take the AI, and see how it goes. Someone ends up being that 1 in 100.
kae - no my insurance did not pay for the Mammaprint. My BS was involved in a study with Agendia and sent one of my biopsy samples to them before the biopsypathology report came back. I did not sign any documents that indicated I would be responsible for the cost of the test, so when my insurance denied payment because it viewed the test as "experimental", I had no obligation to pay for it myself. The lab wrote off the fee. It is very common for those who are Her2+ to come back as high risk of recurrence on Mammaprint, and because chemo and targeted therapy is normally advised, most oncologists don't send surgical tissue samples for genomic testing.
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Hapb, I know you are tortured by this, and I can tell why. You've walked the cancer road a few times. You are an earlier stage. You're darn right it's a harder decision for you. As I read in one article, an expert said that currently, treatments are like shooting sparrows with canons...that refers to you. In bc research, the drive is toward more precision medicine so that treatments are completely personalized. My guess is that we are a decade away from some big leaps in this way.
As mentioned by others here, it is more of a no brainer for us. At stage 3a, I was not going to go for any less than the full nine yards.
I have a different perspective than many, I'm sure, on whether to treat or not to treat. Once cancer is invasive, its invasive. I'd rather bomb the entire village than strike at a few targets. We just don't have that kind of medicine in place now. But because you've had other cancers, and because you're seeing stats that don't impress you, I really understand where you are coming from.
SpecialK, what was different in treatment for you when you were diagnosed...I.e. Why was it deemed an uphill battle? Wouldn't you have had the same treatments they basically have now? And Q: wasn't Herceptin in widespread use by 2006?
P.s. One thing that helps me is to read up on research. When you compare what's being looked at over the last decade versus 20 years ago, you realize that so much has been done in bc. The amount of work happening right now literally around the globe is staggering. It brings me a small measure of peace to imagine these top experts working on this as I sleep. We are moving into an era that may be akin to what the digital era was in the beginning...exponential knowledge and developments. The fax machine was in widespread commercial use in the late 80's. Email was in widespread use in 1994. Now look - kapow. Wireless, virtual reality, internet of things. If BC research is following the same trajectory with respect to human knowledge and innovation, what will the next 10 years behold? Apparently immunotherapy will take centre stage in terms of how bc is treated. I have a few neat links to share if you're interested
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posey - node positive and Her2+ meet my personal uphill criteria, that was not something said to me by any of my treating physicians. At the time I was diagnosed I had already been surgically treated for a pre-malignant ovarian mass, uterine fibroids, a nerve sheath tumor in my right leg, more than 30 skin cancers, and many breast cysts. I had undiagnosed ADH and ALH in the pathology of the prophylactic breast at BMX. What I did not know at the time of treatment, but know now, is that my highly ER+ tumor is also genomically not particularly well controlled by anti-hormonals. The difference in treatment for me today would be neoadjuvent chemo and the addition of Perjeta based on tumor size and nodal status. Yes, Herceptin was in use at the time of my treatment in 2010.
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Specialk- wishing you many, many more healthy years! You are such an inspiration to us all.
I find all the statistics and different perspectives interesting, but also a little scary. I'm in a unique situation because of the no chemo clinical trial I participated in. My Mammaprint indicated I was low risk which made me a good candidate for the trial. I had a great response to the HP only treatments but I don't consider myself in the clear because there is no data yet to prove this provides long term DFS. My MO has told me that the AI is the most important weapon against recurrence so I am willing to put up with the SEs. I'm not taking any chances so I try to focus on good nutrition, exercise, spirituality and eliminating stress. I hope that's enough.
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Posey, good points especially re: invasive is invasive and that means forever. And you're right, better options are on the horizon. I heard on a radio talk show that scientists are predicting a cure for cancer in the next 10 years. Not sure how realistic this is but wouldn't that be wonderful.
I would interested in the links0 -
SpecialK - could you please explain what you mean by your ER+ tumor not being particularly well controlled by anti-hormonals? Are you in the HER2-driven subtype?
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Kae - insurance didn't pay for my Mammaprint; the fee was waived because I was a trial patient. It's a shame insurance doesn't pay for this test because it's a tool to determine the best treatment options0
