Please be honest with me about treatment

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

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.

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.

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!

Thanks for the info!

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 - 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- 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

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 - 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

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!

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.