Triple Positive: Question about Treatment Timeline

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Teakae
Teakae Member Posts: 3

Hello, I am new here. I just had surgery 5/12 and I was wondering if I could get input on the expected timeline for future treatment. My appointment with the oncologist is 6/8 and I have more than a week to worry about it.

Surgery was on 5/12

Stage 1c, 0/4nodes, ER+, PR+ HER2+, Grade3.

Based on what I have read here, I am assuming I need chemotherapy. Grade3 and HER2 pretty much seals the deal? Is this accurate?

TCH is the most common treatment protocol? By the way, does this cause hair loss? I am prepared but would like to know for sure.

We have a family trip to see relatives scheduled for whole month of July. If I have chemotherapy, I am thinking I will send my husband and the kids for the full 4 weeks and I will go for a shorter amount of time. Would that be reasonable or will I be feeling too sick to even think of a cross country trip? If I can go what would be a reasonable expectation for time frame? For example could I get chemo infusion, take 5 days to get through worst, fly on 6th day and fly back on day 21 for the next round?

With summer vacation coming up with a lot of travel plans already in the works, I need to have a better understanding on what I need to be changing so we aren't out a lot of money.

Thanks in advance!

Comments

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2015

    Hi Teakae,

    My situation is similar to yours- triple positive with negative node. My tumor was 1.1 cm. My surgery was on 4/15 and I started chemo on 5/14. I had a lumpectomy and about a month is needed for healing before beginning chemo. My regimen is Herceptin and Taxol. I get the Taxol every week and the Herceptin every 3 weeks. You may not have weekly infusions so perhaps traveling in between would be manageable. If your pathology is back, perhaps you could put a call in to your oncologist (or a nurse practitioner) before 6/8 and ask for a general outline of your treatment plan, with the understanding that the details will be discussed during your appointment time. The waiting during this time is just the worst! My anxiety has reduced greatly since beginning treatment, but I was a complete hot mess for 2 months from diagnosis to start of chemo. I obsessed about every decision (surgery, port, clinical trial etc), now I feel much better with treatment underway. It's a tolerable regimen - I just got knocked down with a bad cold/sinus infection- if not for that, I'd probably feel a lot better.

    I admire you for thinking of a cross country trip. If you are able to go, it will be a good distraction to pass some time!

    Regarding your hair loss question- I can't answer that yet. After 2 treatments of Taxol, I still have my hair, though it is thinning on the top. I did a short pixie cut so that may be helping to stay put for a bit longer. I hear some women don't lose it all on Taxol (Herceptin does not cause loss) and some have luck with the use of a cold cap. I did not try this. I expect to lose it in the next couple of weeks, my scalp is starting to feel a little sensitive. If your regimen includes Cytoxan or Adriamycin, I think hair loss is more expected.

    I wish you all the best- please continue to check in with any other questions.

  • Teakae
    Teakae Member Posts: 3
    edited May 2015

    Thanks for your reply. I didn't realize that there could be a weekly infusion schedule.

    My mother in-law has Alzheimer's and this will probably be the last visit before she won't recognize her son and grand kids. I wasn't on the top ten list with her to begin with so she might have already forgotten me so I am not heart broken that I can't go. But it is important for my husband and kids to go and they wouldn't want to leave me home alone with treatments.

    So now I am wondering if I can get part of my treatment away from my home hospital. Has anybody done this?

  • Michigangirl45
    Michigangirl45 Member Posts: 2
    edited August 2015

    I've just has a double mastectomy last week and met with an oncologist this week and was told I have stage 1c also triple positive.bsame as you ... Can you share with me what your treatment was? I have an appointment for a second opinion , wasn't impressed with the 3 minutes she had spent with me.. Sent me home with the most scary information I've ever read.. Those drugs wow!

    I really appreciate it

    Thank you

    Michigangirl45

  • michelle888
    michelle888 Member Posts: 48
    edited August 2015

    Chiming in as I'm curious as to what others have had for treatment.

    I'm triple positive, stage 1. My treatment is 4 cycles of AC, 4 cycles of taxol/herceptin, 5 additional herceptin, maybe 16 days of radiation as I only had a lumpectomy and then I'll be on 5 years of oral drugs.

    I have seen that people with similar pathology are not being given the AC...

    I am in Canada. My oncologist did say that in general they over-treat to take less chances.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2015


    I was not given AC. My lymph nodes were negative, and my tumor was small at 1 cm. I believe that fit the criteria for not needing AC. I had a lumpectomy. I completed weekly Taxol and continue with Herceptin every 3 weeks now. I start radiation (33 treatments scheduled) next week, and will do Tamoxifen when that is completed.

  • Beatmon
    Beatmon Member Posts: 1,562
    edited August 2015

    Dear teakae: the problem with taking treatment at a different treatment center is mainly with insurance....will it be out of network? My in network is all complete, but I still have a 10,000$ out of network!

    Good luck!

  • Moderators
    Moderators Member Posts: 25,912
    edited August 2015

    Hi ladies, and welcome Michigangirl45!

    This thread has not been active since May, so we are suggesting that you send a private message to Teakae if you have questions, just in case she misses this posts. Let us know if you need help doing this.

    The Mods

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