ER-, PR-, Her2+ Roll call
Comments
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Horsegirl - I have the mouth and gum issues with Herceptin, too. It comes and goes.
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Minus Two,I feel incredibly lucky. I meet with oncology tomorrow. I will know more then and will let you know. Also being presented at cancer conference for the second time on Fri. for final recommendation on rads.
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Hello from England everyone! I'm called MsBrompton because I'm going to buy myself a folding bike when chemo is done.
I've been posting in a different forum and only just discovered this one. I've read the messages from the past year with great enthusiasm - especially the people popping in saying 'I had this 10 years ago and am fine now'!! Tis true I think, ER-/HER+ used to be the 'bad one' to have but because of targeted therapy it has turned into the 'good one'. And no tamoxifen - hurrah! It's still scary, so I SO appreciate women who have long put this disease behind them returning to help the rest of us along.
I just had my 8th out of 12 weekly Taxols. The only thing to report there is that Mark, the 'meet-and-greet' guy in our chemo unit has just grown a ginger beard and because I said he looks like Prince Harry, I am now allowed to CHOOSE which cubicle I get for the next week's infusion. This is important because most of the cubicles are tiny and have no windows but there's two really spacious ones with windows! These small crazy details get you through the journey, huh?
I'm also on Herceptin of course. I'm going to give my own injections when the chemo phase is done. Is anyone else doing that? I gather they give you the stuff in a pre-filled syringe and you keep it in the fridge. The nurse yesterday told me of a patient from Saudi Arabia who bought a year's supply, shipped it back to Saudi and then had a massive power cut and lost the whole lot. Uninsured (but they sounded rich enough to buy another batch!!).
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Hello MsBromptom, I guess we got our Dx's at about the same time. My doc's are still messing around with my treatment plan so you are ahead of me there. Please stay in touch. I am anxious to know about the side affects you are having from week to week. Also would love to hear more about your bike-to-be and The Royal look-a-like.
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I am on my second week of taxol/herceptin. I was blessed and caught my BC very early. I had surgery on August 3, 2015 and I had the 5 day Savi radiation. Nothing had spread to my lymph nodes. But I am HER2 positive so I have to have the chemo. I have my treatment on Tuesday and I noticed I was good the next day and started feeling achy by Thursday night. Friday night was worse. Today is Saturday. ...feel better still some aches but nothing I can't handle so far. Anyone else having similar experiences?
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MamaBexar: I've been watching to see how your tests came out, but saw you posted on a new site. Hope it's OK, but I'm more comfortable answering here. No, I don't think you can wait 3 months to start treatment if you're hormone negative & HER 2+. At least that's what my MO told me. He would let me to wait 3 weeks if I wanted to go on a NYC trip I had planned but would not allow me to take an Alaska trip planned for 3 months after diagnosis. (luckily I got a full refund) I'd known him for some years previous to needing his services so I ask what he would say if it was his Mother's diagnosis. He said starting treatment as soon as possible was the best plan. However, we're different stages & all docs seem to have their own protocol. Please do let us know how you are & what you decide.
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Hi Minus Two, I have missed hearing talking to you ! I had the lumpectomy as planned. You know the old saying that there is no such thing as just being a little bit pregnant. Well, the BS said I had just a little bit of IDC. But I guess there is really no such thing as far as treatment goes. I meet with the MO again in a few days. She ordered a repeat of some of the pathology test. She will decide by that time if I will have chemo. The chemo is really why I would like to wait until 2016. I hate to have all my favorite holidays in Nov. and Dec. messed up by being sick. Every one agrees that I don't have to have rads. My thought is I am going to be having mammos every few months anyway so if I have a recurrence that I will have rads then.
Thanks again for you good advice. I really did want to hear from someone about their experience with postponing, I just got back from a five day trip to Las Vegas that had been planned for months. I have a 9 day trip planned for Nov. and a 5 day trip over New Year. These were all planned before I was Dx. Ofcourse I will cancel if the MO says I need to.
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MamaBexar - interesting about no rads. I didn't know that anyone escaped rads unless they had a total mastectomy. Hmmm. I do understand your reasoning about the chemo. Hope you find a good compromise.
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Sweetrose623 you will feel better tomorrow I bet! Join the august 2015 chemo thread, it's a blast.
MamaBexar you are indeed my time twin. Wish you well!
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Here's an interesting article about treating small Her2+++ cancers. I found this very helpful while working through treatment options.
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Very interesting MaggieCat. But already there are new studies! My treatment is based on this more recent study which followed over 400 women (and one man!) with Herceptin plus weekly Taxol - more than 99% were OK at 3 years. And weekly Taxol is very doable (I am working through this chemo and still have my hair):
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Hi Sweetrose62...
I have been through six rounds of Herceptin-Perjeta-Taxotere. I can tell you that I usually feel OK the first and second days after treatment, and then feel a little worse on day 3, a little worse on day 4 and 5 and 6. Then it gets better. There is a "nadir" around day 7 or 10, then you feel better. All things considered, it was not that bad. This last time (round 6) is the worst, but it's manageable.
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Hello again Minus Two,
The reasoning behind not putting me thru radiation is my age. The tumor was so small that that the BS said "I cleaned up what the biopsy left". The MO said radiation is to kill cancer that might still be in the breast. We will just watch for recurrence, which they consider unlikely in my lifetime, with 3D mammo.. But I do have the same risk as younger patients for mets. so that is the reason for the herceptine and possible chemo.
Thanks Maggie Cat for the link. Some of I was over my head but it was still helpful.
Ms.Brompton, I am glad you are tolerating your chemo so well. Keep your fingers crossed for me.
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All my fingers crossed for you MamaBexar - looks like you got lucky with the size of your tumor and they are looking after you well!
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Yep, that article is late 2014, when I was working through things! I think there is still much debate about what to do for very small ( <0.5 mm) Her2+.
I ended up in the Atempt clinical trial which compares a control arm ( taxol/herceptin) with the study arm (T-DM1, "kadcyla"). I've completed 14 of 17 T-DM1 infusions, finishing my " inconvenient year" of targeted chemo in two months! Can't wait to have this port gone.....
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Wow Maggiecat, so you got to escape the Taxol?! And what's it like being in a clinical trial?
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Well Ms.Brompton, I met with my MO today and finally got the results of my Mammoprint. Looks as if I am classified as High Risk. She also said that there were 10 MOs at the last Cancer Conference and there were 10 different opinions as to my best treatment plan. One was the plan you are on so I decided to follow your lead. I will have port put in on Tue. 10/6, Blood work, 1hr. with P.A. to learn about chemo and heart test on Wed.10/7 and Chemo weekly starting on 10/8. Herceptin every 3 weeks.
I hope you are doing well and keep me posted as how things are going.Well Minus 2, Waiting till next year wasn't an option. My MO said about the same thing yours did.
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oh my, MamaBexar, you will be following my schedule! it is OK. I am connected to #9 of 12 right now :-).
good luck with it and ask me all those difficult questions!
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Thanks Mz Brompton, I will have 18 wks of Taxol. Not sure why. Are you getting your herceptine weekly as well? Can you remember how good or how bad you felt a few days after #2. I have a commitment to entertain about 20 people on Oct.19 from 12:30 to 4:00pm. I will have every thing catered so I am not concerned about getting ready for it but I would hate to excuse myself in the middle of the event. Though I have warned the chairman I may have to do that. A gentle hug for you.
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I am keeping a symptom diary so can look back. All I've written for week 2 is 'dry nose, dry vagina, mild headache, not much energy' - but on the other hand I did go to work!!! I'd say you'll get through your party fine but will have to go to bed as soon as the guests have left and you'll feel shattered the next day. I do recall that Taxol and/or the pre-meds made me soooo dry everywhere for the first 2-3 weeks. Then it all settled down.
I've just finished number 9 of 12, and it was fine. Feeling a little 'steroidy' but nothing terrible. I find most people who post want to report a side effect whereas those without s/e stay quiet, so overall it isn't as bad as the postings make it look.
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Best wishes to you MamaBexar.....MsBrompton too!!
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Thanks Slow,
I am a great believer in self full filling prophecy so I choose to believe it is going to be a walk in the park. Well maybe not that good but far from the worst thing that ever happened to me. That would have to be a total knee replacement two years ago.
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MamaBexar
This is so true. I just had a double cervical disc replacement before getting BC. Physically so much worse. Though chemo on bad days compares to childbirth. In the past week, I heard of someone's 30 yr old daughter having a relapse of bipolar, and someone's ex partner found dead from suicide. Early breast cancer, with best treatment, pales into insignificance compared to these.
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MzBrompton,
I forgot to mention that your comments on Week 2 describe the way I feel most of the time. So I should be just fine for the party. And I usually collapse after a party anyway. I am luckier than most BCs in that I am retired, all my children are grown so I don't have a lot of responsibilities and I live less than 3 minutes from the cancer center where all my treatments will take place. Thanks again for your help.
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You'll be FINE MamaBexar! Hop the party goes well.
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Hi everyone. I am only 1% ER+ so doctors say that's like being negative. I am at day 7 of my 1st round of FEC. Will have 4 rounds then weekly Taxol and 3 weekly Herceptin. Plus radiation at some stage. Ugghhh.
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Welcome Ozigran,
Ugghh is right but keep us posted as to how your chemo is progressing.
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Hi all....just wanted to check in and note that I am 5 years out and doing well. I have just had a Breast reduction to bring back the symmetry to my breasts. The radiated breast kept getting smaller and my natural breast was aging and lowering..yuck!
Remember to always ask questions and be your own advocate! Stay well everyone.
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marjie - thanks for checking in. I too am hormone negative & HER2 positive. It's so nice to hear your positive results so far.
MamaBexar - hooray for retirement. You can nap whenever you are tired. Treat yourself gently. Good luck.
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hi my grandmother is 75yr old. She is er/pr- her2+ ..what is your diet
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