Please be honest with me about treatment

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ik0106
ik0106 Member Posts: 44
edited September 2019 in HER2+ (Positive) Breast Cancer

I was diagnosed in May with 7mm tumor. My biopsy showed ER +, HER2-.. I had a BMX and when the pathology came back HER2 was positive with the FISH test. The original plan from the first biopsy was that I would just need hormone therapy. Now that the HER2 came back positive I am guessing from all my research I will need chemo and Herceptin. I have an appointment with the oncologist tomorrow and I am a nervous wreck over this. What started out as a small, early caught cancer has now turned into something very scary. Please be honest with me and tell me how bad the chemo will be.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2019

    Hi, I was Stage IV de novo so I *HAD* to have chemo & herceptin/perjeta. I was dreading chemo, too, but it turned out to be not that bad for me. I had Taxol, along with the H&P.

    You would probably get Taxotere, maybe Taxol or Abraxane. They're all in the same family of drugs with similar effects. They do not cause the awful nausea and are much easier to take than the older forms of chemo. Worst case, you can develop neuropathy from them (not everyone does) and Taxotere carries a risk of permanent hair loss, although that also does not happen to everyone. These drugs can also damage your fingernails, but that is not permanent either.

    You can stave off the side effects by using frozen slippers and gloves, and fight the hair loss with cold capping. There's plenty of info about how to do that here on BCO.

    Herceptin and Perjeta are practically side effect free for most people. You may get some diarrhea, a runny nose...that's about it for me. Very minor, especially considering the great job they do. They do carry a risk of heart damage, though - you will have your heart function tested before you start the drugs. Definitely talk to your doctor about that.

    While on Taxol, I used the frozen slippers and dipped my hands in ice. I have zero neuropathy. I was active with work and exercise during chemo. No nausea, just a little constipation sometimes and at the end, two of my fingernails and one of my toenails got infected. I went on antibiotics and they eventually healed up. All my nails look normal now. I lost my hair, it has grown back. I do everything I did before I was diagnosed. Also, you may not have to be on Taxol as long as I was. I did 24 weeks of Taxol (once per week).

    I think some doctors may still do a combo of chemo drugs with the Herceptin, I think it is AC&T or Carboplatin with Taxol or Taxotere. I cannot speak for those.

    If you read about side effects, remember, everyone does not get ALL the side effects. Hair loss is a given, though. Everyone loses at least some hair.

  • WC3
    WC3 Member Posts: 1,540
    edited August 2019

    ik0106:

    Everyone responds a little differently to chemotherapy and targeted therapy but my experience with chemotherapy was that it was a just a drag more than anything else. I was weak, fatigued, bored, and things tasted bad. It wasn't fun but I was not vomiting constantly. In fact I only had one episode of dry heaving and only because I fell off my nausea control regiment on my last infusion.

    Some people report bad diarrhea with TCHP. The Perjeta is often implicated in this. I had no such side effect from the Perjeta but had a bit from the taxotere or carboplatin. Not an intolerable amount though. I've been sicker from other things. chemotherapy is just long and a bit taxing

  • AngieB92
    AngieB92 Member Posts: 323
    edited August 2019

    I’m so glad you asked this. I’m currently waiting for an appointment with my oncologist to see what kind of chemo I will have. I am triple positive so I am hoping for TCH, heck, even TCHP. I just want to be able to function somewhat normally each day (work and activities) and save the weekends for resting.

    My tumor was also bigger than they thought from the biopsy (<2cm to 8cm) although it may be clusters making it that big. I’m just ready to start this process and get on to surgery and recovery.

    The people who post here are incredible and I appreciate all of the insight from those who have gone before

  • winedarksea
    winedarksea Member Posts: 7
    edited August 2019

    What did the oncologist say? And what kind of surgery did you receive?

    I am so sorry you are going through this. I, too, started this process thinking I would not have to have chemotherapy - only to discover later that because I was HER2+, even though I am early stage, I would definitely have to receive chemotherapy plus Herceptin. I went from thinking I had only DCIS (my NP mis-read the path report) - to finding out I had aggressive ductal carcinoma that had Grade 3 cells (more aggressive) and HER2+ (more aggressive). I was also devastated as things moved forward and spent many days in tears, anger, feeling alone, and wondering if my health care providers even cared. It's tough. Let yourself grieve, let yourself feel everything you feel - including the fear - but just keep putting one foot in front of the other. Everything changes, especially feelings.

    I had my first chemo therapy yesterday. Your side effects will depend on the type of chemo you receive. I feel lucky - my treatment is Taxol plus Herceptin weekly for 12 weeks, then Herceptin every 3 weeks for an additional 9 months. I had no problems with the infusion. I'm waiting to see what other side effects will pop up (they usually start 2-3 days after this chemo), but this regime is known to be less severe than some of the other chemo therapies. Many of the drugs have much more severe effects than the ones I am getting - so do your research and talk to people who received the same kind of drugs you will receive. Read, read, read, read. Research. And then sit back and let the experts do their jobs.

    One other person mentioned ice booties and mittens. I did that yesterday and will continue throughout treatment (see photo). The research studies on this used a small sample, but the results were good - I am a glass worker, and I need the feeling/mobility in my fingers in order to do my work. Let me know if you want a link to a reasonably priced option on Amazon. (Many "cancer" items are overpriced - just because they are for "cancer.") I wear the "booties" on both my hands and feet. Looks silly, but it works and it's reasonably priced. I'd say you should use the ice for any drug that can cause neuropathy - Taxol and taxol-like drugs are BIG culprits. I ordered extra ice packs, and I switch them out halfway through my treatment (since they won't last a full 90 minutes).

    Any Taxol-type drug will cause hair loss. You can try an ice cap to decrease hair loss. I don't care about hair loss. I'm more concerned with peripheral neuropathy, and I don't think I can stand icing my head as well. (The ice caps are also VERY expensive and not usually covered by insurance.) I'll be shaving my head sometime next week. I already have a wig and plenty of hats.

    Let us know what the oncologist said....when you are able to pull yourself together. This is tough stuff. You are not alone.


  • AngieB92
    AngieB92 Member Posts: 323
    edited August 2019

    Thanks!! I actually have my oncologist appointment next Wednesday. I have already marked the mittens and booties to purchase once I know for sure what’s going on. Going to call a lady who works with my hairstylist to make a wig. I’m trying to pre-plan as much as I can so I won’t be like a chicken with my head cut off.

  • winedarksea
    winedarksea Member Posts: 7
    edited August 2019

    I bought the NatraCure Cold Therapy Socks on Amazon. I tried to post a link, but apparently I am not allowed. The booties run small, so I bought the black ones for my feet (I'm size 9) and I wear the smaller blue ones on my hands. I ordered extra ice packs for both, so I can switch them out halfway through treatment. I keep the extra ice packs in an ice chest - covered with two enormous back ice packs that I bought to use after my bilateral mastectomy. Hope this helps, and you will be happier being proactive before you start treatment. Good luck, and let us know what your oncologist says.

  • ik0106
    ik0106 Member Posts: 44
    edited August 2019

    Thanks so much for your response. I will be having the same therapy as you, 12 weekly Taxol with Herceptin. How do you feel after your treatment? I am already looking into the cold caps and will also check out the ice booties and mittens. I have a few weeks until I start I have a family trip planned in a few weeks and I want to have fun before this starts.

  • winedarksea
    winedarksea Member Posts: 7
    edited August 2019

    I think it may be a bit early for me to tell how the treatments will affect me. First chemo was 2 days ago, and so far all I've had is some constipation, facial flushing, and insomnia. My oncologist said typically symptoms start 2-3 days after the treatment, so we will see how the weekend goes. I walked nearly 4 miles today (I typically walk 4-5) and noticed only a slight decrease in energy, but I am still way too early in the treatment process to know how this will affect me in the long term. I plan to continue exercising as I can because it has proven to help with....everything.

    I opted NOT to use the cold cap, since it's shown about a 50% reduction in hair loss, and I didn't think I could tolerate a cold head PLUS cold hands and feet. Plus, I just don't care much about the hair loss. After you've had a bilateral mastectomy, a full head of hair doesn't seem so important. I already have a gorgeous wig, and I'm planning to get my head shaved at the end of next week - before the hair starts falling out.

    With the booties/mittens, you may want to wear a thin pair of socks and gloves - you don't want to get frostbite.

    Stay in touch, and I'll let you know how I do as the treatments progress. Hope you enjoy your family trip!

  • WC3
    WC3 Member Posts: 1,540
    edited August 2019

    windarksea:

    The flushing is likely from the dexamethasone withdrawal.

    I think day 5 was generally my worst.

  • winedarksea
    winedarksea Member Posts: 7
    edited August 2019

    Thanks for the info!

  • Eigna
    Eigna Member Posts: 438
    edited August 2019

    well I’m kinda trying to figure out what kind of treatment plan I will have. As I am ER + PG -and HER 2 don’t know yet. If HER2 is negative does this mean I don’t need to do chemo ? My Appointment with breast surgeon is September 10th. Is it good thing or bad thing to be positive or negative

  • winedarksea
    winedarksea Member Posts: 7
    edited August 2019

    Hi Eigna. I can't advise you on what kind of chemo you will get, but the current recommendation regarding HER2 positive cancers is that Chemo + Herceptin are used. Even if it's negative, there are other factors about your cancer the oncologist will use to determine whether you need chemo.

    Better to be HER2 negative than HER2 positive. If you're HER2 positive, it means your cancer is an aggressive form (same thing with Grade 3 cells). I was glad that my nurse navigator told me explicitly that if my cancer was HER2 positive, I definitely would need to have chemo. It made my surgery choice easier. Since I knew I would have to have chemo, I wanted to avoid radiation if possible. I could have chosen a lumpectomy (as my cancer was only on the right side), but then I would have had to have radiation AND chemo. So I chose mastectomy - I was taking a gamble that the cancer had not yet spread to the lymph nodes (since it was caught early), in which case I would not need radiation. I was right. The reason I chose bilateral mastectomy was because I did not intend to do reconstructive surgery, and I wanted a flat breast. It also means I do not have to have mammograms and worry every 6 months about whether the cancer had recurred.

    Again, this is MY experience, and treatment is different for everyone. Keep reading, keep researching, so you know how to make the best decisions for YOU. If you are meeting with a radiation oncologist, ask very specific questions about how radiation will affect you....including the long-term effects, such as increasing the risk of developing other forms of cancer later in life....due to the radiation, not the breast cancer. My rad/onc was very clear that radiation often caused other forms of cancer down the road - usually "strange" forms of cancer (his words, not mine).

    My surgeon was hesitant when I told her I wanted a bilateral mastectomy, but once I explained my reasoning - and assured her I was not overreacting from fear ("just take them off!") she was supportive of my decision. Do your research. Advocate for yourself.

    Good luck. This all so confusing at the beginning, and it's frustrating when you have to wait for results. Hang in there!

  • Margun
    Margun Member Posts: 419
    edited August 2019

    Winedarksea- are you taking hormone pills as well? I am triple positive.. I had bmx, the left was prophylactic. Yesterday when I went to have my herceptin, nurs told me that she cannot apply pressure on any of my hands by the rubber band ( turnekit??)) ,because I had surgery on my both Breststo facilitate needle insertion. She said it is better that I have a port. I did all my chemo without port and I was disappointed that no one told me that I need port after bmx so that I inserted the port during the surgery. I heard that port placement is hurtful and I could avoid at least that. After discussing with her colleagues ( she did not try to reach the doc)the nurse applied slight pressure and inserted needle afr'ter a few attempt. My question tis Do you have ports and at what stage it was inserted?

  • winedarksea
    winedarksea Member Posts: 7
    edited September 2019

    Margun - I do have a port. I had it placed about 3 weeks after my mastectomy, I believe. I didn't have any issues with port placement - they give you IV medication prior to the procedure to ease anxiety and help you forget any trauma (just like they do for colonoscopies). The port placement was one of the easiest things I've been through. The only thing I didn't like was the drape they put over my face and neck, but when I got claustrophobic they gave me some additional medication, and then I was fine.

    Getting a port is a personal decision, but I cannot imagine going through chemo without it. Chemotherapy does terrible things to your veins, and if it leaks out of the veins, it's even worse. For me, it wasn't something I even needed to think about. I used to be an IV nurse, and I've seen so many veins destroyed by chemo and other medications that I knew I would get a port. Hope that helps.

  • winedarksea
    winedarksea Member Posts: 7
    edited September 2019

    Margun. No, I am not taking hormone pills. I just started chemo 3 days ago - Taxol and Herceptin. I have another 11 weeks before I'm ready for that.

  • Margun
    Margun Member Posts: 419
    edited September 2019

    Winedarksea- how big is the tumour. Mine was 1.3cm (not too big) triple positive and I had to take Ac and then taxol plus herceptin. Yours must be very small to avoid Ac. I am encouraged that rads were not recommended for you. I have bmx and even though pat report is not out yet my lymynodes are believed negative. I hope my docs also conclude that I do not need rads. But if they think that they will considerably decrease recurrence, I would go with their suggestions

  • AngieB92
    AngieB92 Member Posts: 323
    edited September 2019

    Looks like THCP for me. My oncologist recommended 6 treatments- one every three weeks. I've ordered my cold booties couldn't find good mittens so I am going to put non-latex gloves on and stick my hands in two ziplock bags full of ice cubes. Hopefully that will help. My first treatment is scheduled for September 17th is so can get my bone, CT, heart tests and port installed before then. I'm ready to get this show on the road

  • Ingerp
    Ingerp Member Posts: 2,624
    edited September 2019

    Just re: ports, I did fine without one. I understand some of the harsher chemo drugs are better through a port, but Taxol/Herceptin are okay without one. I don't know about getting IVs after BMX, but Margun--with only Herceptin left you might talk to your MO about it. I understand the LE concerns but not everyone gets it. If you're not having LE issues, it seems an IV should be okay.

  • HeartShapedBox
    HeartShapedBox Member Posts: 172
    edited September 2019

    It seems like the standard chemo for ER+ HER2+ is TCHP (Taxotere, Carboplatin, Herceptin, and Perjeta- which is what I am on).

    I was TERRIFIED of chemo and dreaded potential side effects. And I have to say, although it has been hard, it wasn't NEARLY as bad as I feared. Truly.

    Nausea was my biggest fear, but I've hardly felt any (and the meds stop it totally). TCHP isn't known for causing much nausea. Fatigue will be the #1 unavoidable side effect, but daily walks help boost energy. For me, the main side effects besides fatigue have been bad heartburn (prilosec helps), diarrhea (immodium helps), mouth pain (sucking on ice chips during chemo and swishing with glutamine helps), and dry/painful mucous membranes (drinking lots of water, Vaseline or coconut oil on dry parts helps).

    You will find you're stronger than you think you are, and you'll get through it! Good luck!

  • AngieB92
    AngieB92 Member Posts: 323
    edited September 2019

    HeartShapedBox - thank you for your input!! I am worried about nausea the most and the nausea medicine making me feel like a zombie. I’m trying to work during chemo and I don’t want to be sleepy all day. Do you stay with the prescribed nausea medicine the whole time or do you wean yourself off after so many days

  • HeartShapedBox
    HeartShapedBox Member Posts: 172
    edited September 2019

    Luckily I have HARDLY had any nausea with the TCHP, so I've not had to medicate for that much. I realized the nausea I did have was probably caused more by the acidic stomach pain I was having, and prilosec and antacids actually helped both symptoms for me.

    I was instructed to take prochlorperazine at the first hint of nausea, and it DEFINITELY turned me into a zombie (it's actually an antipsychotic prescribed to schizophrenics), but it works very well for nausea. Because I was so paranoid about puking I did take it a few times during my first cycle (and couldn't function, there's no way I could've worked!), but when I realized my nausea was mild and was helped by other meds, that stopped being a problem for me. And if you do have mild nausea, zofran (ondansetron) works well and didn't cause any sleepiness or other side effects for me.

  • AngieB92
    AngieB92 Member Posts: 323
    edited September 2019

    Ok - thanks!! I really hope that I can get on top of the nausea and not have to medicate with prescription last very much but I will be glad to have them if the need arises!

  • ByUmom2
    ByUmom2 Member Posts: 43
    edited September 2019
    Hi everyone. I finished my last Taxol on 8/13. Did Herceptin every week with taxol. My MO let me take a couple weeks off to move daughter into college before starting the every 3 week Herceptin. I went in Tuesday for the first solo Herceptin dose. Apparently it was a loading dose and will be cut down in all doses following. I never had any nausea/vomiting while on Taxol &Herceptin, but exactly 24 hours after this load of Herceptin I had an hour of uncontrollable vomiting. It was crazy! Has anyone experienced this? I was finally able to get Zofran down to help. I haven’t had an issue since then but my stomach is definitely not 100% back to normal. I will plan to take Zofran first thing the morning after my next dose of Herceptin. Would appreciate any words or advice. Thanks!!
  • ik0106
    ik0106 Member Posts: 44
    edited September 2019

    I see that many people are getting AC along with Taxol. I am only getting Taxol/Herceptin/Perjeta. What is the determining factor for who gets what type of chemo? i also see that some people do not get Perjeta

  • SpecialK
    SpecialK Member Posts: 16,486
    edited September 2019

    ik0106 - chemo regimens are often decided by the clinical criteria of your cancer, your oncologist's philosophy, and center practices and policy. Taxol and Herceptin is generally used in very early stage Her2+ cases as studies have shown it to be an effective combination with fewer side effects. Taxotere/Carboplatin combined with targeted therapy and Adriamycin/Cytoxan/Taxol combined with targeted therapy are somewhat interchangeable, some oncologists choose the TCH(P) option because of concern over cardiotoxicity. Whether Perjeta is added is usually determined by stage, as it was initially approved for tumors over 2cm, or smaller tumors with positive nodes, or for certain high risk patients.

  • HeartShapedBox
    HeartShapedBox Member Posts: 172
    edited September 2019

    ByUmom- did they give you IV antinausea meds with your Herceptin? I am given both palonosetron and aprepitrant thru IV as premeds to chemo, and have had NO nausea at all during or the couple days after chemo. (But everyone is different, of course)

    iko106- I was prescribed TCH+P for having a large main tumor (4.5 cm) that had already spread to my lymph nodes, and was growing aggressively. But studies show the perjeta adds a pretty negligible outcome benefit (1-2% cancer free survival odds) to the Herceptin alone (it was developed by the same company as Herceptin after their patent ran out on that, intended to be a new alternative to Herceptin but it performed far worse, so they marketed it as an add-on instead). Because of this, and the amount on perjeta diarrhea that's plagued me (I needed to go in for IV hydration this week due to all the diarrhea) I'm going to discuss with my MO the option of continuing with JUST the Herceptin instead of H&P for my remaining year of adjuvant chemo.

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