Who has started herceptin and taxol regemin in October 2016?

Hi Germangirl16 - When I was waiting for the hair to dye at the salon, these two adorable little girls, 3 and 6 came in for haircuts (although a bit weird since neither of them needed one). The 3 year old looked so much like I did at that age, with curly, dark hair (and big eyes, with curly long lashes) - but back then my hair was usually a tangled mess because they didn't have detangler and conditioner. Anyhow, I decided to get my hair cut like the little girl, but I don't think it turned out like hers, or looks as cute. It's probably not as short as it needed to be, an inch above the shoulders and a one length bob; but it's a huge change for me already as I've had very long hair for the last 20 years. I'm glad it's happening in steps.

I'm on the Wed schedule, too. Today is my first treatment (taxol, herceptin), and I"ll put the lidocaine on the port spot after I finish this post. My port is in an unusual place - not so much in my chest, but on the side, in the fleshy spot where the top of your boob meets the armpit. I put on a tank top, but left the strap down since the port still hurts (after a week), and I'm wearing two zip jackets so they can access it. Last night when I went to bed I was extremely nauseous from the pain meds, and had a horrific headache - thank god I was able to fall asleep and it was gone when I woke up. Nausea doesn't sound that bad until you actually have it. I hope that's not what I feel like after chemo.

Germangirl16 - Thanks for the empathy. Stomach pains lasted about 24 hours, so not so bad for the first treatment. Oh no! Radiation causes fatigue?

KB870 - Thanks for the well-wishes.

ksolo11 - Thanks for the information and the support. I am assuming they'll start ramping down on the pre-meds. I'll make a note of the labels at the second treatment as they discard the packets. Wow! I'm getting twice as much herceptin as you, and 1/3 more taxol. Maybe you're much smaller than I am since it's done by weight? I am about 5'2 and 130lbs right now. They weighed me before treatment and said that you have to be within 10% of the listed weight.

Tinyfrog - I started on higher doses of herceptin and taxol at the first one or two visits, then they were cut back. And we are about the same size except I am about two inches taller so my guess is that is the protocol. Let me know if/when your dose changes. And I'm not sure why they recommend ten years for me on the tamoxifen. Most people I know are on a five year plan. I would rather not be on medication for that long obviously. I am going to ask my oncologist the next time I see him.

How is your stomach feeling? How is your energy overall? When is your next treatment?

Ksolo11 - I found on a UK site that the first dose of herceptin is 4 mg per kg, then goes down to 2 mg per kg for the rest of the 11 weeks, then I think doubles to 8 mg per kg for every 3 weeks; this seems to be the same protocal so far for me. My weight was about 132 lbs, which is 60 kg; and my herceptin was 241 mg. Do you know if anything came to fruition regarding the herceptin shot trial? It was like 500 mg a shot regardless of weight, I think. I would love to get this port out after the taxol - still hurts, and just give myself a shot every 3 weeks.

My friend was 36 at the time of her diagnosis, and has been on tamoxifen for 8 years. I think there may have been a recent medical recommendation upping it from 5 to 10 years. At a closer look, I don't actually see 5 or 10 years in the oncologist's clinical notes, so that may have been a verbal from my breast surgeon that I filled into my memory. I'd have to directlyask my oncologist what she's thinking about me next time I see her. Since my friend is now only 44, maybe that has something to do with it. I am 46 now, but will be 47 (birthday in April) when put on tamoxifen - so in 5 years, I'll be 52, around the time I probably would have hit menopause naturally. Perhaps I'll have more options like AI's then.

Although most of the acute pain was in the first 24 hours, I didn't feel normal for the rest of the week. I guess it's just going to get worse, as the treatments go on. My 2nd treatment is on Wed. I have a mammogram tomorrow on my other breast, which is actually the one they've been watching for the last 18 years (calcifications since I was 29). I made sure to ask for a 3D, so I have to drive twice as far to a place that does it; but makes it worth it since the 2D are rather useless with such dense breasts.

Camarillomom - Yeah, I hear you. I think we are having the same side effects. All of my insides feel broken. I can get to sleep, though - it's like the only way out of the stomach pain. And yeah, the stool softeners and magnesium aren't really helping much with the constipation. I guess I'll have to also add in psyllium or some fiber.

Hi everyone! It's probably somewhere in all these messages, but my skin is so very dry, especially my hands. Suggestions? I'm doing Vit B6 to help prevent neuropathy. I bought glutamine, but haven't started it yet. Does it help with dryness too? I heard tea tree oil also helps with dryness. Thoughts? Thanks!! Hope everyone has a good week of treatments, my #7 of #12 is tomorrow!

KB870 - Oh wow! The link you provided is really detailed! Good read. Thanks for the link. It seems to match up to what I've been given.

Ksolo11 - I had my second treatment today. Bendaryl went from 50 mg drip over 15 mins to 25 mg immediate push into port. Decodran went from 20 mg drip over 15 mins to 12 mg, and was told would stay a 12 mg. Taxol was again 129 mg for both first and second time over 1 hour. I was told it involved a body surface calculation. Herceptin went from 241 mg over 90 mins to 121 mg over 30 mins (4mg/kg to 2mg/kg as listed in the link 2.1 Adjuvant treatment).

I took an hour nap afterwards. No stomach pains like last time.

KB870 - Yeah! Congratulations! One more treatment left, so happy for you.

kmk40 - Thank you so much for the well - wishes. You wrote, "He said about 70% of patients on Taxol keep alot of their hair." Oh, I had no idea those were the stats. I just had my 3rd treatment yesterday, and so far no hair loss, but I think I read it usually happens 4-7, if it does? At 46, I in comparison, I am considered young and healthy, so maybe I'll keep my hair. I wash my hands alot, so I do get really dry and cracked skin in the past, and have used sheaterra madagascar vanilla certified organic shea butter. And yeah, it's like solid and greasy like coconut oil. I use to spread it on at night, and put socks on my hands - like they would do in a nail salon.

ksolo11 - As mentioned with treatment #1 - I had a lot of digestive issues with the big dose, and ended up buying a lot of those organic pureed soups from Whole Food in anticipation of not being able to eat much. But the treatment #2 was completely different. I had no digestive issues and the steroid this time really increased my appetite - and I was craving carbs, which I rarely eat. At the treatment #3 weigh in, I gained 6 lbs in one week! As you might remember, I had previously on this and another thread been asking about steroids, because I thought my oncologist might be taking a risk by minimizing mine. However, after treatment #2, I understand why. I only got 3-4 hours of sleep for the entire week, and while that was actually very productive the first few days, I had a really bad wired and tired feel by the 4th day (fyi this is considered a mixed bipolar mood, when you have symptoms of depression and hypomania at the same time - so not good). I had back and neck pain, too. My steroid at treatment #2 was 12 mg and was suppose to stay that way for the rest of treatment, but since I didn't have any hypersensitive reaction to the chemo, she dropped the steroid down to 4mg (like you) for yesterday's 3rd treatment, which ended up being fine. I was able to rest during treatment, and drive home. Now the benadryl and steroid are just pushed through with a syringe instead of an idea drip, shaving 30 minutes off the time, so my time at infusion is a little over 2 hours now - 1 hr taxal, and 30 min herceptin, and 30 mins for drawing blood and waiting for results to start.

Hi Ladies!

Second go round with BC, nine years after bmx, hyster oopher...... Drs stated I had a life time risk of 2% the cancer would ever be in my breasts! Well won that lottery!!! Sadly! New IDC,ILC,DCIS and ADH in one tiny .95cm of tissue left in sternum area on right breast.

With no ovaries I am ER +99% PR +78% HER 2 +++

So triple positive too! But that gives Drs options so it's a good bad kinda thin

I've decided to join in on the thread since I am one week from starting my Taxol Herceptin treatments. I changed onco' after getting a second opinion and the first wanted me on TCH and I did research and thought taxol was a more appropriate chemo. Glad my new Dr Anne Favret agreed.

Couple questions:

-you only do Herceptin every three weeks while doing the 12 weekly of taxol?

-should I not buy a wig ? Insurance is not paying and I don't think I will like it

Trying to eat 60 grams of protein this week leading to chemo. Trying to start a one mile walking routine.

Any other tips I should start this week?

Tinyfrog- I live in Northern Va so you are close by me. What onco group do you use? I am with Virginia cancer specialists

Thank you ladies

Daniella

Hi Daniella,

I am so sorry that you're having to go through this again. While I had heard that a mastectomy wasn't fool proof, I'm incredulous to learn that it's come back within that .95cm of tissue left. Unbelievable! It's an unusual place to be in, when you're that rare person in the statistic.

How did you know I was in NOVA? I just looked up your doctor, and wow - she looks very highly credentialed and rated. It looks like you've made a good change to a new onco; I'm sure that was a difficult decision to do. All of my cancer care is with INOVA, so I'm with a different group. However, if you're seeing your doctor in the Fairfax location at 8503, then I'm in the same medical complex - but at 8501. I think that both groups use the same infusion center, which is 8505 Suite 140. I have found that the nurses there are fantastic. I go on Wed at noon and now it takes about 2 hrs and 15 mins (the first infusion is slower, and takes like 4 hrs).

Wow, you're really proactive, and already bringing in the positive lifestyle changes with diet and exercise, Good for you! I didn't really prepare at all, my worry was more over transportation because I'm pretty much doing this alone. Aside from the first 2 sessions when you have to have someone drive you until you know how you're reacting, I've been able to drive myself to/from the 3rd, therefore so far so good.

I get taxol and herceptin every week for the 12 weeks. Then it's herceptin only every 3 weeks for the year. The hercpetin dose varies and there's a discussion earlier in the thread, as well as someone posted the actual dosage guidelines. The 1st infusion is bigger, then it drops by half for weeks 2-12, then I think it triples for the 3 week dose.

I think the hair loss is very individual for this chemo mix. I cut my hair shorter, just in case. I just did my 3rd infusion last Wed, and my hair is fine for now - but I think it's too early to tell, as I've read, if it happens it's usually during weeks 4-7. Germangirl16 lost her eyelashes and eyebrows 6 weeks after chemo ended. And KB870 reported losing 70% of her hair. But someone mentioned that 70% have managed to keep their hair, so the odds are in that direction, I think. The only problems I'm having now are a reaction to the steroids, where I haven't slept well since the 2nd infusion, and my throat seems swollen today , so I could be getting sick; but my white cells looked good prior to the last chemo.

Bought the wig yesterday! So now my hair won't fall out! LOL

Welcome danix5. KB870, glad some of you are nearing the end of treatments. I have just #4 taxol/Herceptin treatments left. Woo hoo!! Then Herceptin every 3 weeks for the rest of the year.

I was the one who mentioned the 70% keeping their hair because my oncologist said that. I don't know if that's accurate. The study in small HER2 positive tumors that showed reduction in cancer recurrence with weekly taxol with herceptin for 12 weeks did NOT include hair loss as one of it's monitored side effects. They just didn't track hair loss. (I'm a clinical pharmacist, so I've read a lot of the studies that pertain to what I'm going through.)

I've lost pretty much all of my hair and I'm young too, 40 yo. If you read the side effects for taxol, the incidence of alopecia (hair loss) is 87%. So.... I think it's very individualized! I was "prepared" but looking back, losing almost all of my hair has been the hardest thing I've experienced during all of this. I started noticing hair loss just before I started treatment #3 and had the most loss that week and through treatment #4. I had my hairdresser cut it short week #3 and then my husband cut it with clippers week #4.

I personally have two wigs and wear them because I work in healthcare, and don't want to appear "sick" if I see patients. I wear my chemo beanie if I go to yoga, to chemo, or around friends and the house. Maybe I'm strange but I like wearing my wigs. I don't attract attention when I wear them, which is what I personally feel most comfortable with.

Good luck to everyone this week.

Daniella, I can totally relate how much you love your hair. I hope you manage it as well as you anyone in our situation could. I'm probably the unusual one who waited for it to start coming out in large amounts, but I was very hopeful I would be the exception, and I don't think that's a bad thing. We can always hope, just prepare yourself that it may not work out!