TRIPLE POSITIVE GROUP
Comments
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Hongh--I don't think there's any big rush to get started, since it's such a long-term treatment. I had surgery last March, chemo over the summer, rads in Sep/Oct, and didn't start the AI until mid-November--actually, I didn't start the full dose until December 1st.
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Hi...ingerp & hapa - I will give April 1st a try to start (April fools day - that will be a day to remember) I need to write down in my journal how badly I feel before I take Tamoxifen, so I can't blame all the SE's on it. Every bone in my body aches right now. I might even start out at 5mg. Thx for the encouragement!
Hongh - I had surgery Aug 2017, Chemo ended April 2018, and Herceptin ended last month. But my *ss of an MO had forgotten that he hadn't started me on any kind of Anti Hormone pill - and I wasn't going to say anything. So, Technically, I will start my Tamoxifen about a year and 1/2 later - I'm not sure what the norm is - Anybody else ????
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Hi specialK, Ingerp, rljes, thanks for all the reply.
I am going to call Dr office for the blood test result and prescription.
rljes, I can’t believe you MO totally forgot about the hormone pills for the whole year ? We really have to stay on top of this ourselves, they probably think we are her2+ only, on my medical record, her2+ comes first and ER+ PR+ sits at the bottom of page. MO probably only sees HER2
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Tres. So happy for your great news. As for AI, my MO goes in a very specific order. I have my last Herceptin May 20 and see her that afternoon for the next step in treatment. I have been voicing my concerns about it taking so much time before beginning Arimadex, she assures me that it comes after completing Herceptin even though it so darn long with all my suspensions for compromised heart rates
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rljes a lot of us started at a reduced dose—either every other day or half a dose every day. I did it for three weeks before going full dose and my SEs have not been too bad.
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Getting a hysterectomy tomorrow morning. I've had cysts all my life w/o problems and before I had was diagnosed with cancer I had a small cyst, which has grown slightly since then. Dr finally suggested it all be removed. Blood tests say everything is fine so I'm not worried. Looking forward to a little r/r since my daughter got married last Saturday and we had so much family from very far away, I need the rest
I prayed for the past year to just be healthy and able for the wedding and I was so happy to be there. Now this small hump and maybe some traveling this summer 🤗
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tres, yassssss!💃🏼 Been praying to hear this good news. Phew! What a relief it is.
Guys today is my one year cancerversary.
On this day I had my mastectomy after neoadjuvant treatment.
Cheers to more thriving years ahead...💃🏼💃🏼
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Those who start anti-hormonals after Herceptin is finished are in the very small minority. It is customarily started about a month after chemo is finished if you do it adjuvently, or after surgery if neoadjuvent. Some oncs start during rads, some wait until after rads is finished if it is required. Some oncs like to separate surgery/chemo/rads with breaks so as to properly attribute side effects, but waiting until after targeted therapy is complete is a rarity, and a potential risk, IMHO. I can count on one hand those I have seen wait until H is done - just sayin' Also, I endorse the slow warm-up that ingerp describes - start with an every other day, or reduced daily dosage, I think side effects may be minimized for many by doing it this way. Beware though that your oncologist may not support this method, but sometimes you have to do what is best for you as an individual. I fully confess to stretching out my steroids post-infusion so that I didn't fall off that cliff - did I tell my onc - nope.
princess - the first year of many more to come! Yay!
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LTWJ what a way to get some rest lol Glad the wedding went well and you were upto par to participate on it and all the family happenings!! Good luck with you hysterectomy I pray it goes well.
Princess Meg.. congrats on your cancerversary. Wishing you many more years to celebrate (?)
I talked to my MO last month and plan to again on Friday about the anti-hormones. I'm pretty sure he said I'd start after my BMX...like within that month.
Hoping you all are well and had some of that beautiful sunshine today...it's been chilly here lately but that hasn't stopped me and my granddaughters from enjoying being outside on their Spring break!! So nice to get a little (and I mean little) yard work done lol
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Jstarling I didn't want to comment but I've never heard of anyone waiting until after Herceptin to start an AI. Some MOs even start it during rads, although I think the majority wait until after rads, but certainly not after Herceptin is finished.
LTWJ good luck with the surgery. Everyone I know who's had one has said it was not a big deal, and they were happy to be rid of the troublemaker.
rljes--some of us cleared the slower on-ramp with our MOs, some just did it on their own. I haven't heard about a single MO who had a problem with it.
Princess--weird to say congratulations but here's to good health in future!!
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Jstarling, I would like to add my two euro-cents to the discussion - I was started on an AI 1 month after chemo finished.So this was right after my 2nd Herceptin-only injection. Plus I was on ovarian suppression (because pre-menopusal) from the first chemo day. Generally, all women here get their antihormonals at very similar schedule.
I started the AI slowly, 1/2 a tablet for about 3 weeks with my MO knowledge and blessing
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Hi All - My MO just plan forgot about giving me Ani-Hormones. I think his exact words were "I thought you were already on it" And me- never reminded him.
SpecialK - I agree totally about starting out smaller dose. Planning on 10mg with Tamoxifen - (against my Dr's wishes) I might even start out at 5mg. I have committed to start taking Tamoxifen on April 1st. April Fools to my body.
Jstarling, I too had heart issues with Herceptin. I am surprised that they didn't order one last Heart Eco to see if I recovered.
LTWJ - you should be recovering with your hysterectomy by now, best wishes for a speedy recovery. I am so grateful I had one years ago before Cancer - at least I don't have to worry about that.
Princess - Didn't the year fly by? My 2 year is coming up sometime in June I think. I had only one OBGYN appointment 10 years ago, and of all Doctors - they had her call me with the news. Awkward. Guess she drew the short straw.
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I posted the following message to a different topic but since rljes just mentioned 10 mg and 5 mg tamoxifen, I would like to post it again if you do not mind:
"Today is the 10th day my wife started to take tamoxifen and so far she is not feeling any obvious SEs, However, the pills were a little too big for her to swallow, she broke it into 2 pieces on two days. Today when we mentioned this to the Nurse Practitioner and she said we should not do that. Is 10 mg tamoxifen smaller than 20 mg one? Can she take 2 of 10 mg instead or ask for liquid form? Would insurance coverage be an issue? Thanks a lot."
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Jstarling, I'm so sorry to be commenting on the timing of starting of Arimidex/tamoxifen. My oncologist really stressed the importance of starting arimidex after about 2 weeks of completing rads (I was on herceptin). I have never heard of waiting to complete herceptin. Perhaps you could ask your onc if there are any studies you could read--not that you do not trust him but as information only. You could also get a second opinion.
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hi y'all I have a question. If at the time of my upcoming BMX IF the BS gets all the cancer out do I still have to stay on Herceptin? I mean if it's gone is it really gone and that's the end of it all? Sorry to sound dumb it's just i have a lit running through my pea brain right now and it sounds like a logical question to me. Thanks 8)
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nanette7fl, my understanding is, regardless the outcome of surgery, H (or HP) should be continued to a whole year.
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nanette - the additional H is to prevent recurrence. I think the general assumption is that the BS gets all the cancer out during surgery. If not, then you'd either have another surgery, or in some rare cases when they can't remove it (like if it's in a supraclavical lymph node), they'll target that area with radiation. I had little issue with H only infusions, if that's any consolation to you. Had my last one about a week ago and only ever felt woozy during the infusion once or twice. Other than that, no SEs at all.
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hapa, it looks like you have H only (instead of HP) after 6 cycles of TCHP. I was under an impression that the remaining H only (or HP only) infusions should be 11 cycles, but today when we checked this with the NP and she said that, my wife started the first TCHP in the middle of last July, the infusions should finish in the beginning of July to make for a whole year. If that is the case, my wife's HP only infusions would be 12 cycles instead of 11. We may not be able to confirm this with the MO until 3 weeks later, but was the NP incorrect?
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Lily - I got 17 total, so 11 after finishing TCHP. I don't think either is right. 17 cycles every 3 weeks is 51 weeks. 18 would be 54 weeks. I guess it depends on what they consider a year. Though I do wonder if insurance will pay for that 18th cycle
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In my case it's 14 Herceptin only--12 weeks with the Taxol, first H only one week later, then 13 more H only every three weeks = 52 weeks.
Nanette--others here have a much greater understanding but I believe the chemo and Herceptin target distant recurrence, whereas surgery and rads target local recurrence. The full course of Herceptin is one year.
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hi. I am diagnosed with Her2positive grade 3. Tumor size 15mm. I am scared what I find about this Her2positive. Apparanyis the most agressive with high recurrence. Any positive stories out there?
I had my 3nd ac treatment on March 8 and until now I have a dry cough mostly during the day. Nuts sais if there in no mucus no worries but anyone had this and what causes this?
Tjank
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Margun--I was told that HER2+ is a more aggressive tumor but also has better outcomes because of Herceptin. I know a lot of women develop a "chemo cough"--it should go away when you've finished treatment. It will help to put your information in your profile and make it public.
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My first go 'round I was on Herceptin for a year, to prevent recurrance (fat lot of good that did), I don't think Perjeta was even an option yet. This go 'round I'll be on H&P for the rest of my life (I hope).
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hapa,thanks.
Ingerp,for your treatment, it still counts total 17 times of H(3 times for the first 12 weeks with chemo and 14 more with H only), am I correct? If that is the case, HPs after TCHP should be 11
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Hey SpecialK, Nanette, Ingerp and rljes. Thanks to you all for the kind words.❤️
rljes, you mentioned your 2 years cancerversry is coming up in June, I noticed that's the date of your DX.
If I am to go by that then this September will be 2 years for me.
I did ask on this forum when exactly is the anniversary but didn't get any answer, nobody commented on it.
I am confused on when the cancerversary is really? Is it the date of the diagnosis or is it the date you had NED?
Can someone please tell me?
Jstarling, I started Al one month after rads and that was because my MO said he likes spacing the treatment so as to point the reason for a SE if there's any. Like SpecialK rightly said, waiting till after H to begin al is not safe in my opinion as they do different things. H takes care of HER2 while the Al is for ER. My 2 cents
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Lily--with weekly Taxol you get the Herceptin every time, so total of 26. When you move to every three weeks, you get three times as much as you got weekly. The important thing is the total of a year, although I know there was a study last year suggesting six months is just as effective.
FWIW--I count my cancerversary from the date of diagnosis. I believe that's what most people do.
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I count my BMX day as my cancer free day, because for the 7 months before with chemo and lumpectomy I still had cancer
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ingerp, I noticed that but I don't think it's right. Unless ofcourse it's the anniversary of the diagnosis.
LTWJ, my exact sentiment. I mean i wasn't cancer free on the date of dx, I became cancer free on the date of MX after chemo.
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Just an update I finally got the tamoxifen prescription from my Dr, took for 2 days haven't seen any SE yet. Usually how long does it take for the SE to show up?
My Dr also prescribed me with monthly shot to suppress hormone, is anyone also on that? He said it might further reduce the recurrence chance but no data shows it really improves when HP is also used at the same time. But he wants me to try it and we can stop if bad SE shows up. I think the name of the shot is Triptorelin.
I also counted how many total HP I need, on my schedule, I saw I had 6 chemo before surgery, since my surgery was delayed , I had one extra HP before surgery so it total count as 7, until now I had 3 HP after surgery, and my schedule shows I have 9 left, so I will have total 19 H+P , that's a really odd number
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Hi guys it has been a long time. I think I may be in need of some of that SpecialK advise and knowledge.
1) curious, have any of you had a second primary of uterine cancer
2) I have, and it is rare and aggressive, Uterine Serous Carcinoma, and I will be starting chemo for it on Wed. (Carboplatin and Taxol every 3 weeks for 6 cycles) then brachy rads. I've never done Taxol, but I have done Taxotere. I hear it is Taxotere's evil twin, so you need steroids the night before and the morning of. Any secrets for that? Any new secrets for chemo side effects???
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