TRIPLE POSITIVE GROUP

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?

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!

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?

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.

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.

Thank you, ladies, for clearing that up. All these side effects...and years to go. It can be daunting.

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

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.

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.

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!!!!

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....

Hi Sammy3 & Furiso,

For me, I choose a single nipple sparring mastectomy instead of lumpectomy because of the following reasons: I was small breasted and a lumpectomy would be very noticeable; with a lumpectomy, I would have needed to do radiation (likely 5 days per week for 4-8 weeks for me, and I live 90 minutes away and am trying to continue working);

I chose single vs double as I tested negative for all the genetic testing including BRCA 1 & 2 and 22 others and I liked the idea of keeping the sensation in my other breast.

I was able to have reconstruction done during the same surgery as the mastectomy. I was up walking around and using the bathroom on my own within a few hours. No lifting over 5 pounds for 2 weeks then no lifting over 10 pounds until after the 4th week. Limited cooking/cleaning ability for a month (kind of nice!) I did need some help at home the first several days, mostly because of being so sleepy from the pain medication. I found it more comfortable to sleep on our reclining sofa for the first several weeks. If I had a desk job, my plastic surgeon would have released me to work after 2 weeks, but due to the physical nature of my job, I wasn't back to full duty until 6 weeks post op.

Ultimately, make the decision that feels right / best for you. I remember agonizing over all the decisions, but after they were made, I had a huge sense of relief. It keeps amazing me how many decisions there are to make in treating breast cancer. It feels good to have a plan and be moving forward in beating cancer.

I chose DMX after an MRI that was done after biopsy showed another area with same characteristics as biopsy site and the other breast showed a node that would need a MRI in 6 months. I felt that since I didn't know there was an actual lump until biopsy (I was told mictocalcifications) that I didn't want something else to not be seen and additional surgeries. I am happy with my decision and the outcome of surgery, but you may want to look at pictures of reconstruction on Vinnie Myers website. He does the final step of nipple tattooing.

Does anyone know about the stats for reoccurance from HER2+. They say the risk decreases after I believe it is 3 yrs. Does that mean 3 yrs after initial surgery, 3 yrs after starting herceptin / perjeta, 3 yrs after finishing all treatment, after a clear pet scan, mamo or some other event? Love, Jean

zjrosenthal yes your risk starts to decrease at 3 years and continues to decrease but never zero. If you are HER2+ and hormone negative you sharply decrease after 3 years and after 5 years you are almost zero.

But for the actual stats you need to talk to your MO. S/he can give you YOUR stats bases on your diagnosis, age, treatment and health history. We both my be stage IIB but we got different treatments and may be different ages. Younger you are the higher risk you are for recurrence