TRIPLE POSITIVE GROUP
Comments
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Truffles where do you live
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wabals I am in Virginia Beach.
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Jersey my MO decided to start me on ESD. I was so close to menopause given my mom's and sister's history. Already peri although my cycles were still like clockwork. She tested me for 5 months to see if I stayed in chemopause. I had a much easier time than my sister. Hot flashes only at night were very minimal and I had no mood swings.
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Truffles, I moved to another state after my treatment started. It wasn't a big deal at all. I met my new MO and we sent up the appointments there.
JerseyGirl22, I took Tamoxifen for about four months before I switched to Anastrozole (Arimidex). I didn't have any side effects at all. Well, I did occasionally have leg cramps at night but those stopped after I made sure I drank plenty of water during the day.
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Truffles what I would do is start treatment at Hopkins, if you can start sooner. Then switch to more convenient location. I would still keep your MO at Hopkins so they can check all labs echoes etc. I would be wary of the first MO since they got things so wrong. Find one at home who is willing to share your info with JH. I get my treatment there. They are the best
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Ok, so, met with Mo yesterday. They've declared me cancer free after neoadjuvant chemo and BMX. Had first Herceptin only IV yesterday and rads due to start next month... Then came the discussion on "well, 5/23 nodes were positive" so there are options to pursue... a "bit" more chemo, stronger, harder chemo at that - NO. My body had a really hard time with chemo to begin with, and I got the impression that was not going to be her recommendation, anyway. Then, it was rads, Herceptin, and then Tamoxifen for a very short time to see if my periods come back or not. If not, then move to an AI. If they do come back, the prophylactic ovary removal and AI... Xeloda was tossed around in conversation, but dropped....
Anyone have any thoughts here... SpecialK, and lago, I'm thinking you might have some insight here...
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jersey - sounds like a reasonable game plan to me, with rads providing clean up in the axilla and the continuing protection of Herceptin and the addition of anti-hormonals. I think the Tamoxifen in the short term until your menopausal status is determined is good - with ooph and AI in the wings. I would ask your MO to lay out any specifics regarding ILC with this plan. Here is some info from BCO on this:
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Thanks, SpecialK!
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JerseyGirl,
I was Stage IIIA, too, (albeit with only one compromised node) and no one mentioned further chemo to me! But, rads was almost a given, and I'm busy doing ovulation suppression (Zoladex) and Aromasin (an AI) rather than Tamoxifen. I've decided to keep my ovaries; OBGYN says that women who keep their ovaries live longer than women who have them removed. Just a different approach!
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Jersey Girl ILC can be sneaky and might have a higher risk of recurrence and you have node involvement. What was the issue with Xeloda? My concern would be more the hormone positive part. So I would expect you would be doing some kind of hormone therapy for 10 years. I know due to the size of my tumor my MO wants me to do 10 years. Did you discuss suppressing your ovaries with meds so you can do the ESD (estrogen sucking drug) instead of Tamoxifen?
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I may have asked this before, but chemobrain. And post-surgery. Have any of you ladies had trouble with hormonal birth-control, but done fine on hormone suppression? I reacted BADLY to birth control years ago and now we have to go messing with hormones again. MO wants to try suppressing my ovaries, but I worry about a 3-month shot and aftereffects. Plus Tamoxifan. I think he wants to head toward ovary removal--not sure my GYN will go with that considering my age--and eventually an AI.
I know we are going the opposite direction, but I was in bed for two weeks on my first BC prescription, in pain. Can't risk that with a shot.0 -
Hi all! Quick hello. Been out and under the weather. Just no real energy to reach out or give. I miss being here more and am going to come back soon. You are all so amazing!
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Musosgirl birth control pills are just the opposite of hormone therapy. Birth control adds hormones. Cancer hormone therapy blocks or sucks the estrogen out of you. If you have side effects I doubt they will be the same as birth control but it's best to ask your doctor or even your pharmacist. I'm not either.
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Elaine and lago... I've actually got it on my list to ask my MO about the ovarian suppression rather than removal. Hubby's best friend is a gyne onc and he always says ovaries out is worse than keeping them and using suppression drugs.
lago, yes, the hormonal rug would be for 10 years, as my tumor was 7cm, to start... the Xeloda causes severe/violent diarrhea in some patients, and that was a huge problem for me on chemo. The doc feared it would be 10x worse with the Xeloda given my history, as that particular side effect hits me if I have any kind of anxiety, etc..
Elaine, have you had side effects with the Zoladex and Aromasin? If yes, can you let me know what you experienced?
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Zoladex and Aromasin have given me 1) hot flashes and 2) moodiness. To get rid of the latter, I'm on Celexa, which has worked. So, that just means hot flashes really. I'm at my Mom's with the family for the holidays, and she keeps her house cool. She keeps apologizing for it, and I'm like, really Mom, it's not bad. In fact, I miss the ceiling fan from my home bedroom.
Good luck, trying to make choices!
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Xeloda is an AI, or hormone suppressor? And causes diarrhea? I am still having diarrhea on Herceptin only. It's not as severe as on TCHP, but it's still with me. We haven't officially talked the hormone stuff yet. We know there are several hurdles in that department for me though--I think my MO is avoiding it as long as possible. If I had any sort of memory, thank you chemo, I would say I'll keep Xeloda in mind and make sure I never take it.
Got my referral to the RO today. Meet with her after my next Herceptin infusion--I really like having a one-stop cancer clinic. I'm there the whole day, but they work hard to schedule everything very efficiently.0 -
I think I posted this before on this thread, but my OB and my MO were adamant that I keep my ovaries. They both said the ovaries do many things for us, and that we should really keep them in given my age (40). So I do Lupron injections every three months for ovarian supression. But unlike anyone else I have found here, I am doing OS with tamoxifen. My MO was worried about bone density, and since I handled birth control well (no clots) she thought the tamox side effects were lower risk. We will reassess in two years
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Musogirl,
Xeloda is a form of chemotherapy that is taken as a pill. It is used to treat metastatic breast cancer. It's not usually prescribed for early stage BC.
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Musogirl, Elaine is right... my MO had that in the list because 5 nodes were positive... However, since I'm doing radiation, and they got everything, she didn't really push it, I just think it was in the mix of what she had to tell me. I still have the diarrrhea with Herceptin only, too. Ugh!
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Thank you, ladies, for clearing that up. All these side effects...and years to go. It can be daunting.0
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Musogirl, Xeloda (chemical name: capecitabine) is cytotoxic drugs, quite similar to 5-Fluorouracil, but it can be administered orally. Xeloda can causes bone marrow supression, diarrhea and hand-foot syndrome, but generally is less toxic than 5-FU. Yes, it usually prescribed as second-line drug and sometmes used in elderly patients with ER-negative cancer.
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Merry Christmas to everyone.
My cat died this morning, but feeling blessed to have had him for 17 snuggly years.
Cancer sucks in any species
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Debiann, sorry about your furbaby. 17 years you were both blessed!. May all the Christmas "doing" help you today!
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Thanks Moon. Yes, visiting with family was a good distraction and it was a wonderful. My daughter said now he is our Christmas Angel Cat.
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Hi everyone - hope you had a nice Christmas yesterday. I have a question for those of you who have had mastectomies. I am just in the beginning of my TCHP treatments, and next year I will have to make the surgery decision - to have the mastectomy or not. I am leaning towards doing the bilateral (I did have atypical hyperplasia on my left side in 2011). However, my brca were both negative and also I was that person who posted earlier that my oncotype completed, showing a her2 - result and a fairly low oncotype # (13). Believe it or not I *still* do not have the result back - I asked for a re-run of the FISH test. ANYWAY...with all that being said, I go back and forth on what is right for me. How did you decide? I think I am scared of the surgery. We put our bodies through so much with the whole process. If I continue (obviously pretty likely) on the TCHP, my last chemo infusion before going to H only will be late March. How soon could I do the surgery? How long were you completely out of commission? I was hoping to have a pretty "normal" summer of 2016 if possible. Thanks in advance for your replies!
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Hi Sammy3, I haven't had a mastectomy, but I'm going through the same decision-making process you are. Dx in Oct, on TCHP, negative for BRCA and a host of other markers for breast and ovarian cancer.
I'm really interested in what women here have to say about their decision-making process.
I'm leaning toward a lumpectomy rather than a full mastectomy or bilateral, mostly because the more dramatic the intervention the more opportunities for things to go wrong, for additional interventions to be needed, etc. But I often feel like I'm missing something, as it seems so many women opt for mastectomies. So interested to see what the thoughts of others are.
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Hi furioasa!
I opted to have a lumpectomy. By the time I was done with neoadjuvant chemo, a PET scan and an MRI couldn't pick up any active cancer. So, my surgeon just removed a golf-ball sized amount of tissue around my surgical marker. My BC boob looks fine; there's just a little dent from where the tissue was removed.
I was just too lazy to get a mastectomy or bilateral mastectomy and then to go through reconstruction. A recent study showed that women who got mastectomy(s) plus reconstruction were more likely to have complications than women who went through lumpectomies and radiation. Of course, some women sail through recon, but others end up having multiple surgeries.
I have 13 year old twins with autism. They are a handful. I could not see myself going through surgery after surgery while keeping up with them.
Best wishes!
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Just making my first post here on this site (tho posting in a couple threads). I found you about a week ago but with Christmas and other stuff it seems like I just didn't have time to figure out how to say hello! Still not sure if I have it right, but giving it a go at least!
Hoping you all had a great Christmas! My family came here so I had lots of preparations but was happy to have them. Had a great time but I was exhausted last night!
Here is a brief story on my journey so far. I was DX in late Oct with IDC and ILC. I am tripe positive and the tumor was of a size that everyone I spoke with wanted me to have Perjeta and chemo before surgery. The radiology report said the tumor was 2.3cm. The surgeon said it's much bigger than that... maybe 4cm. The MO said 4 cm on my first visit. Sent me for a PET just to be sure his treatment plan was on target as if it had metastasized it would mean a change in treatment. The PET was pretty clear, no nodes showed up as involved although we won't know for sure until surgery. The report said the tumor is 5+cm or multi-focal, which is what I think it is based on what I feel. An any rate... I began a treatment plan of Herceptin, Perjeta, Carboplatin and Docetaxel on Nov 17. I had severe diarrhea and when I say severe, I mean maybe 20+ times a day. They did not give me the next week's Herceptin (I am on a once a week for 52 weeks plan), but gave me fluids and sent me home with a warning that if it did not get controlled with new meds I would end up in the hospital. The following week the MO decided we needed to find out which of the 4 drugs caused the problem, so we started with Herceptin a lone that week. No problems at all. Then the next week we did Herceptin plus Carboplatin. I had the big D for 2 days but was able to control it with meds. The next week we did Herceptin plus Taxotere (Docetaxel) at a half dose, and I had the big D for 2 days, but was able to control it with meds, then on days 6 and 7 it began again and much more ferociously. I was able to control it with meds however, so I thought we were fine. The next week the MO said it was the Taxotere and I could not have that drug as he has had a few patients lately have this same issue only much worse and ended up in the hospital for a few weeks! So he has switched me to a weekly dose of Abraxane. It is in the same family as Taxotere and Taxol, but I cannot find a lot of info on it and I'm concerned that the trials that had the great results with Perjeta were not done with it. He assures me it should be just as effective and give me less side effects, but I'm still a bit concerned. I'm wondering if anyone out there has had any experience with this drug and knows anything about it's affectiveness in combo with Herceptin and Perjeta? The good news is that this past Monday I had Herceptin and Perjeta and did great with that. So Monday I am scheduled to get my first of the new 4 drugs, and I guess you could say this is in actuallity my third round of treatment since I did have a complete treatment over the past 4 weeks, although just one at a time. I am thankful to finally be moving along, but I just have concern over switching medications.
If anyone has any info at all about taking Abraxane with this combo, I'd love to know more about it!
Aside from the diarrhea I experienced the first round, I have not had terrible side effects. I do get slightly nauseous about the second or third day, but I start the oral meds and have never gotten seriously sick. I find that it's worse if my stomach gets empty and so a little food helps a lot. My hubby also found some hard candies at the baby store, designed for preganancy related nausea and they work well, as does sucking on ginger candy. I have had some issues with my nail beds especially on my toenails, and they can be a little sore, but nothing I can't handle. The week after treatment I have extreme dry mouth, some mouth sores and heart rate changes, but again, all are mild and bearable. I guess all in all, I am finding chemo to be far less terrible than I had anticipated, and am so thankful for that. I am blessed in that I am retired so I don't have to work and can manage my own time by how I feel.
I am praying I don't catch the cold that 3 of my family members had while here Thur. and Fri. as it was a yucky one!
I will be just getting the 4 drug chemo on Monday. Since the Abraxane is dosed for a weekly dose, I'm not sure how that will go yet. I will go every week for Herceptin and Abraxane, and then every 3 weeks will add the Carbo and Perjeta to that mix. Perhaps being every week, the Abraxane will not make me drop as low in blood counts as the Taxotere and Carbo together did the first time. Anyway... hoping the cold doesn't strike me this time!
Thanks for listening and letting me voice my concerns here! I love reading the wealth of info on this site and look forward to getting to know you all better! Happy New Year to you all! May 2016 be better for us all!!!!0 -
I chose to have a double mastectomy, one reason was I didn't want it to come back later in the same or other breast(which I guess we never know if that would happen or not but I am a nurse and have taken care of many patients who have said the cancer came back in the other breast years later). The other reason was for symmetry, I didn't want to have 2 different not looking boobs. It is a long process. I finished my TCHP in May 2014, had my mastectomy in July 2014, had the Lat flap in January 2015, had a revision in Sept 2015 and just had my nipple reconstruction this week(Dec 23rd). I plan to have my nipples tattooed June 2016. So from start of treatment to being completely done it will be 2 years and 4 months!! It's a marathon not a sprint. Feel free to pm me if you would like! Good luck with your decision!
Kathy
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Sammy3, I chose to have BMX, as I had such anxiety at the thought of having mammos on the other side every 6 months and constant testing to make sure the shadow detected there hasn't changed. I have triple positive, ILC and wanted everything that could be gone, gone. It's a very personal decision. I will tell you, the whole surgery was far less scary than I expected. I was up walking around and using the bathroom by myself within a few hours of surgery. I can tell you more of my experience if you want to hear it...just private message me....
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