TRIPLE POSITIVE GROUP
Comments
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Congratulations Cassie and Jenifer on finishing chemo!
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congrats to all those celebrating end of rx and NED!
just wanted to report back on my MO appointment in regards to SOFT results. She said the only thing they don't know is if the benefit in OS+AI is the same if given years after treatment. The women in the study all started in one of the arms within 8 months of finishing chemo. I am over 3 years out. She said that we can infer that it would still be beneficial for 2 reasons; we know that er positive cancers can have late reccurances and we know that 10 years of hormone therapy has an advantage over 5. So for all these reasons plus i am considered high risk she is recommending I continue with the shots and switch to an AI
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JeniE, congrats to you! We started and finished right about the same times.
Liz and slousha, congrats on being NED!!! I can't wait to be able to officially say that. I'll have a PET/CT on the 29th and am hoping for great news before the New Year starts. Wouldn't that be a great way to start a new year?
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Congrats Jeni!!
Rozem - thanks for sharing. I go Wed., armed with data from this wonderful forum - but for it, I would not have been aware of SOFT so quickly.
I'm wondering about ovary suppression vs. surgical removal. Apart from the shots for OS being potentially reversible if you stop and surgery being permanent, does anyone know of any advantages/disadvantages over OS vs. surgical ovary removal? Does one have worse SEs? Second question - any particular OS drugs better tolerated than others?
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Congratulations Cassie and Jenifer
Usha 5 years! that's awesome!
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I finished TCHP on Oct 29, MRI on Dec 1, still showed cancer, BMx on Dec 2nd, path report CANCER FREE, so TCHP gave me a cPR and MRIs will sometimes show cancer as present after it has been 'killed' by chemo.
All this discussion on OS, and post surgical hormone treatments. Where do I find more info, my apt w/ MO is tomorrow, and I'm doing Herceptin until July, but think tomorrow might be the day we discuss what to do on the hormone receptor status treatments. I was 48 when diagnosed and still having periods every 28 days within an hour or two, so VERY regular, and am adopted, so have no family history, BRCA neg.
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formydaughter - I did ask my Gyn this question, she said that OS chemical would have the same SE's as surgical, no better, no worse and that the only difference is being able to stop the shots. I always wonder if having your ovaries, even though you are in menopause is still better than no ovaries at all - any thoughts? I was really hoping that I was in permanent meno so I wouldn't have to make this decision
I don't think there are any differences between Lupron and Zoladex - I have been on both. The only thing is my ONC does not like the every 3 month shot because there is a greater likelihood of breakthroughs which you do not want when you are on an AI
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Well, it looks like I will be starting OS via Lupron with my next Herceptin treatment. If I tolerate it for a few months, then we will switch to an AI. Staying on Tamoxifen in the meantime. MO said that statistically speaking, 85-90% of patients would be "cured" (his word) by the TCHP treatment for where I fit into the grid, and that it is likely that anything that we do now would only potentially be harmful, considering SEs, for the cured. He said that the difference between the SOFT arms for women in my bracket (age 40 at diagnosis, T2, etc.) is there, showing that the AIs are more effective, but that some would consider the difference to be insignificant/small when you weigh in the added toxicity with OS + AI (toxicity being defined as SEs that land you in the hospital/interfere with daily life). But he recognized that for those who have a recurrence, the difference would be very significant. He said that either treatment has good results and is a sound decision. It is so hard to balance doing everything that you can to be/remain cancer free with not causing yourself harm or added sickness from treatment SEs. I had been really advocating this change in my treatment, given the SOFT results. But instead of feeling relieved that we are going to the new plan, I feel scared. Go figure. Be careful what you wish for...and all that crap. Hoping I feel better after I sleep off the treatment meds from today.
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Saw MO today. He is going to ask for the specific cell pathology from my core biopsy in June. He said, he wants to know if there were cells that were hormone positive AND HER2, or if I had different cells with ER+/PR+ than my HER2+ cells. Until he has these results, he is keeping me off the hormone treatments. If I understood him correctly there is an issue with a hormone positive and HER2 positive cell accepting both treatments at the same time. So right now, not doing anything on that. I need to read up more on this issue.
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formydaughter...interesting what your MO said. I guess it would be statistically insignificant for some for sure. I guess it comes down to how much are you willing to bet that you will be on the right side of those stats because chances are you will be. My absolute risk dropped from 23% to 15% with OS+AI which is pretty high. I did rads for less than that im sure. I know I keep bemoaning the same point but im mad at my body right now. I wish I just stayed in menopause and didn't have to yank these ovaries. I know, I wish I wasn't here in the first place!!!!
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Rozem, where did your MO come up with 23%? My MO did adjuvant online but it doesn't include the Her2 diagnosis so I wasn't sure how to interpret the stats. Cancermath.com had an even lower number for me. So now I don't know how to figure my absolute risk. I spoke with my MO today. She agrees with me that I'm in the middle of the two groups they mentioned. She thinks I should stay on Tamoxifen for now. I'm currently in chemo induced menopause. She said the results showed women that went back to being premenopausal after chemo were at a higher risk of recurrence. We are going to check my hormone levels every three months. If I come out of menopause, we will start the OS. She is really concerned about osteoporosis. The study showed an 8% increase in osteoporosis which she thought was significant. I'm at an increased risk of osteoporosis because I'm thin and a Caucasian. I had been trying to push for OS plus AI but now that the results are here, I'm not sure I still feel the same. I sure wish I knew if I was going to stay in menopause. I hate to make my body older than it really is!
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mommato. my risk of reccurance was 23% when i was diagnosed. Thats the number my MO gave me. Now ive done cancer math etc and it was lower. So i dont really know which number to use. The risk reduction was 34% so thats how we got to 8% reduction. If my risk was calculated on 15% then the benefit would 5%.
I guess the biggest thing here is that Women who did not get their periods back did better so if you're stays away that's half the battle!
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I have received a second opinion and this Dr wanted to do Taxotere, Cytoxin, herceptin and Perjeta in 6 cycles. The first one wanted to do Taxotere, Carboplatin, Herceptin and Perjeta. Does anyone know why or what there experiences were? Thank you so much. Starting Neoadjuvant after Christmas.
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Some new research getting attention these days..,
Bone drugs may thwart Her2 driven tumors...
http://www.medpagetoday.com/HematologyOncology/Oth...
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Thanks for sharing that link, ashla.
PMR, I don't know what the differences would be in cytoxin vs. carboplatin but it would be worth asking the MOs. Good luck to you. I just finished my 6 cycles and am glad to be done.
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Cassie
Thank you for replying!! I will do more research on this. Congratulations your done with Chemo!! You made it!! Enjoy Christmas! I am trying to get in the spirit but have to admit its a struggle.
PMR
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PMR - usually the chemo regimen for including Herceptin/Perjeta is either ACT (the C being Cytoxan) or TC (the C being Carboplatin). At least these are the FDA approved regimens. Carbo is an alkylating agent. It interacts with DNA to interfere with DNA repair, to attack the cancer. There is a study showing that it may be 20% more effective than other BC treatments for BRCA1 and BRCA2 + women. Cytoxan is also an alkylating agent. It interferes with DNA replication by forming intrastrand and interstrand crosslinks, to attack the cancer. I'm interested to learn why your MO is looking at swapping the C's. Please share what you learn.
ashla - so if the AI causes osteoporosis, the silver lining is that the bone drug used to treat osteoporosis may give an added anti-BC benefit. The woven web becomes more complex.
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PMR53, I haven't seen too many times when Carbo is swapped out for Cytoxin. As you can see, I had a different TX so I don't have info for you. The first few weeks after diagnosis are the hardest. It will get a little easier when you start treatment. Feel free to ask questions or vent. We're here to help you!
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I got some great news today. Three weeks ago the NP from my MOs office ordered my tumor markers. It was slightly elevated at 50. My MO just called to tell me they dropped to 41. She thinks it was due to me being sick and the inflammation in my body. We are going to stop monitoring them now. I am so relieved!! I have to admit I was a little scared. To go through five months of this awful stuff and then have elevated tumor markers. Now I can really enjoy Christmas and the cookies I'm making today!! Sigh...this weight will never come off.
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mommato3
That is great news!!!
Formydaugh
Sounds too good to be true, doesn't it? Bisphosphonates are not easy meds to take though. We shall see...:)
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ashla I wonder if Prolia helps or hurts.
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mommato - that is great news!!! Enjoy the cookie making!
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Congrats to all the ladies finishing chemo or remaining NED! And, good to hear your news, mommato3!
After 5 months of chemo, I finally met with my surgeon to talk about surgery. This surgeon seems young and a bit inexperienced, but he did a nice job with my power port, so there's that. Before chemo, MRI and PET scans suggested that one lymph node was compromised. I got an ultra-sound guided, fine needle biopsy of the node, and it tested positive for cancer. But, there was no surgical marker implanted so we could keep track of its location. Well, now the most recent MRI and PET scans show nothing in the nodes, and the surgeon is trying to figure out which nodes/how many he should take out. MO assumed that he'd take out the previously-compromised node and some of its neighbors. The surgeon assumed that he was going to take out the sentinel node and some of its neighbors. After I talked to him today, the surgeon is going to survey his BC surgeon buddies about this issue. I guess I should be happy that if he doesn't know the answer to a question that he's going to talk to other BC surgeons. But, I do feel like a bit of a guinea pig here. Too young and inexperienced? Should I be shopping for another surgeon? Suppose he ends up taking out lots of lymph nodes just to be on the safe side. Does that increase my chances of getting lymphedema?
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Doesn't hurt to get a 2nd opinion…and with surgery it's a good idea anyway. The risk of LE goes up the more nodes they remove. But some people don't get it. If you got the nodes removed with your do radiation too? If not is radiation an option instead of removing the nodes? You have a lower risk of LE if you just to radiation.
I had level I nodes removed (10 on the left). Back then if your tumor was over 5 cm they removed at least level one. It ended up I didn't even have micromets but for a tumor that size it's unusual. I do have LE in my left arm but I also have a family history of LE so no big surprise there. I caught it early and wear my sleeve daily. So far I haven't had any other issues.
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lago - I am in the waiting room now at the MO - will be asking the Prolia vs bisphosphanates question.
Congrats to those done with chemo and or current NED reports - yay!
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Elaine There
My personal experience has been that if I'm feeling uncertain about anything important....much less cancer surgery.. It is best to get as much info as possible.
If something goes wrong.. And stuff can go wrong with everything...You will forever second guess yourself.
No harm getting another opinion.
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lago - done with appt, MO is sick so I saw the NP. She was not familiar with this new info, but we did discuss whether the results are bisphosphanates specifically, or could other bone building drugs like Prolia also provide benefit, because bisphosphanates are all that was studied - I.e., is the benefit bisphosphanate only?
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It sounds like Prolia works differently than the bisphosphanates (including Reclast). If I understand correctly the thinking is bisphosphanates help your immune system. Prolia on the other hand may make you more susceptible to infection… but that is my non-medical professional understanding of what I read. They article says nothing about Prolia.
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My takeaway from the article ashla linked is that the bisphosphonates had a cell killing mechanism that occurs through binding of molecules in the studied bisphosphonates with the Her specific molecules, which resulted in slowed proliferation of the Her molecules. What is not known is whether or not Prolia, or other unstudied bisphosphonates, have the same molecular binding action. It also sounds like there is some variation in proliferation control rates among differing kinds of cancer that all exhibit Her characteristics.
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So basically they don't know how it works either
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