A/C was easier than Taxol / Herceptin / Perjeta - :-(

[eva9310]

I thought the Pacitaxol/Herceptin/Perjeta would be easier than the A/C. I don't have 3 days of laying in bed but the side effects are horrible for me and I don't know what is causing them.

I have 12 weeks that go like this 4X

Week 1 - Perjeta/Taxol/Herceptin
Week 2 - Taxol
Week 3 - Taxol

Then I start all over for a total of 12 weeks.

I have a rash on my face that comes and goes, it's horrible and it itches. I have blisters on the joints of my hands that itch but don't seem to be getting worse.

I have diarrhea so bad, I thought it finally stopped but it's back.

Neuropathy (is that what its called) is horrible. My son asked me to open is gatorade bottle and I thought the ridges on the cap when twisting were going to tear my hand open.

My feet, ankles, hands and knees are swelling.

the post nasal drip is non stop, embarrassing, my nose skin is raw from tissue and my nose bleeds from all the drainage but aquapohor seems to help inside and out.

I'm generally a non complainer, push through at all costs but I've only completed treatment 5 out of 12 and I don't know if I can make it! Two weeks ago I would have never said that!!!

Add in the prospect of surgery, now second guessing the diep since I can't get the size to match and maybe need to do double mastectomy with diep and implants.

I said the other day chemo was an easy choice because I didn't have to worry about surgery but they want answers and we need to make decisions but now it all seems so complicated plus the thought of radiation kills me. My docs have agreed to do the sentinel lymph node dissection/ biopsy a week before surgery so that we can know what our plan is before surgery regarding radiation since I'm in a grey area of having to radiate.

Radiation petrifies me, expanders horrify me. For the first time I feel down in the dumps, depressed and don't know how I can get through all this. I know God will give me the strength I need to get through it but all the decisions seem to have a down side. There is no easy answer to any of it.

I don't even know if they will let me do a double! Will they take a healthy breast? I can't remember what my odds are of developing a second cancer in the other breast.

I was a perfectly healthy 41 year old not too long ago, 2 kids who keep me busy, a owner of a business, wife mom etc and now I feel like a haggard 41 year old going on 60!!! I feel vain for being worried about my body after surgery. :-( I was happy at 5'4", 130-140 pounds and a size D. Was I perfect no but it's who I was and I was perfectly content with it. I was never into fashion, shopping, clothes etc. Most days I'm in work out clothes or in my swimsuit hanging out playing with my family in the pool (because we live in Houston TX and we swim 9 months out of the year). I wish I could get past the image part. It makes me feel shallow to be so concerned about something I never thought about before. Probably because I took it for granted.

Sorry for the rant, just feeling down.

[linzer]

Eva, sorry you are going through a tough time. I think we all could have written this post at some point (and probably have

I've not yet done AC. That's coming up in a few weeks after I heal from my lumpectomy/lymph node dissection that I had yesterday. I have completed the 12 rounds of THP just like you're doing it.

For the diarrhea and neuropathy, try L-Glutamine powder 30 grams (yes grams) a day. 15 in the morning and 15 at night. I used the brand called PURE and bought it on Amazon. It's not cheap (about $40 every ten days if used as I described) but it works. I never got neuropathy. Just a mild tingle one or two times. It also helped with he diarrhea. Yes, I still had lose stools, but way diminshed and no cramping.

For your skin, try NeoSporin or something with hydrocorisone. That may help a bit. Take baths with Aveeno skin calming stuff - I think it has oatmeal.

I didn't get swelling until after I was off of THP. I teach, so they got a bit large by the end of the day standing on them. Put them up as much as you can. It will pass.

I can't speak to the mx and expanders and diep, but I know many here will be able to.

In my experience, I can't think ahead to rads etc. just be in the moment at the stage of treatment you are muscling through. Then prepare for the next.

It is tough, but try to think of how you can beat the side effects instead of letting them beat you. Fear can't live in happiness. Think about all of the years by the pool that you want to spend with your children. Yes, this year will be one to remember (for all the wrong reasons) but your hard work will pay off and next year will be very different.

You can do this. Take some time to feel what you need to feel. Don't deny the anger, sadness, and disappointment. Then, dust yourself off and figure out ways to get ahead of the SE's.

Hugs!

Linda

[europa]

Hey there,
Sorry it's so horrible. I experienced the same thing. AC was easier than Taxol was. I had all of your side effects except neuropathy and diarrhea. I found that coconut oil was amazing for my facial rash and I too had a raw nose that the oil helped. I also noticed that when I got to the 8th dose the side effects stopped being so bad. The only thing that lingered was a horrible horrible bloody nose. My sinuses took a beating during taxol and I'm still dealing with issues whenever allergy season starts or I get a cold.
I also noticed that my finger nail beds were a little numb, maybe a tiny bit of neuropathy and I would massage my fingers every night and every morning with a very heave hand cream...it seemed to work. I don't know if you get body aches. I did and a hot shower would do the trick. I sometimes would take up to 4 showers a day to ease the aches.
Once taxol is over you are going to feel soooooo much better. Promise

[Nurse4u2day]

Eva I'm so sorry that your experience with the taxol treatments are so rough.
I Did the A/C which for me was horrible. Once I completed the a/c I moved on to weekly txs of taxol/ herceptin. Both my oncologist and myself decided to skip the perjeta . Had not my chemo worked perjeta was next. So I speak to you with out the knowledge of using perjeta . I had mild neuropathy with taxol/herceptin and had a few discolored toe nails. Plus all the above you have minus the facial rash and blisters from itching.
Elevate your legs as often as you can for the swelling. Ask for lomotil for the diarrhea . For the itching see if they will prescribe you something called Atarax , it's an oral pill ( worse side effect was it can make you a little drowsy so take at night only.
Hot baths or even showers are Great for achy bones and muscles. I even bought a small shower seat It was to hard to get out of bath but I would sit on the chair and let the shower run over me.Please don't be afraid to get meds from your oncologist to get you through these side effects.
As for the pending surgeries and possible radiation I too thought hmmm I don't know if I can do this. It's just one thing after another with out a damn break! It sucks and it's hard to even imagine while your I. It that you will get through it but you will.
You will deal with it when the time comes! That time is not now so try to put that to the side for now. Deal with and get through the hear and now first. And yea I was more scared of radiation then I was of surgery and chemo. Today I just completed round 15 of 28 . Compared to everything else I have gone through well for me this although not easy as pie it's not horrible either.
Tissue expanders suck! But after having them in now for over 3 months I'm getting use to them. As for the Diep that's next on my plate . And yes if you want a double mastectomy (bmx) then they will give you a double after counseling you on it. I had cancer in left breast but for multiple reason choose to have right breast removed as well ( no cancer found in right) .You will do this and get through it simply because the alternative sucks!
And complain complain complain because you know what this is some heavy crap and we are deep in it .
Tamara

[Lisalou]

Hi Eva
I did the same chemo regime. Had some neuropathy that is not starting to resolve. Last chemo was 7/24. The diarrhea was very bad and I lived on Imodium or else I could not stay continent. I took B complex to reduce the neuropathy side effects, iced my hands and feet during infusions, and had weekly massage with Reiki, as well as acupuncture. I believe they were all helpful.
I did BMX. Not for fear factor but because I wanted symmetry. I don't regret my decision. Though of course these are personal choices. I also did BMX to avoid radiation, I was in the grey zone. And the risks from radiation or full axxillary node dissection were greater than my risk for recurrence so I opted out of those treatment And just did the chemo and BMX The TEs were uncomfortable and I am glad to be rid of them but they were manageable.
I have implants in now and they are much more comfortable.
Hang in there. You can get through it.
One day at a time.
Take care
Lisa