HERCEPTIN and/or PERJETA Threads

Don't know if you had herceptin alone, Barb, but when I had it in 09/10, I had no ses. That was coming off tax & cytoxen. Now that I'm only on h/p (w/femara...off navel 4 mos now), I have a drippy nose, dry eyes, a bit slight bit of finger/toe neuropathy. My eyesight changed (much more nearsightedness..that docs finally say may be one of the drugs). My hair is getting much thicker after dropping navel. I have weird lumps in my gums...se??? Other than that...good appetite (femara munchies), good energy. How are you feeling, Barb? I'm hoping h/p keep you feeling good & keep pesky cells on the down low!!!

Oh Barb...I remember when I first started perjeta, my nurse said D was the worst se for her other patients. She said to call if I needed to take more than 8 Imodium in 24 hrs, but Navelbine constipates so I think they cancelled each other out, and my system has adjusted. I remember others saying that a long time ago...sorry, I'm hoping you find a good remedy.

Barb, ditto what kjones and Ronnie said. H&P seems like a walk in the park after chemo SEs! My vision has been seriously affected (new stronger lenses every six months - $$$$), constantly drippy nose, tiny bit of neuropathy. My chemo (Navelbine) caused constipation and cancelled out the diarrhea from the perjeta . My body must have made the adjustment, because I am pretty normal now even though I don't have the chemo any longer. I think your body might adjust too over time - I hope so. Feel better soon, buddy. SUE

• thank you ladies. I appreciate you

I am on h/p with xeloda. Theperjeta was just added in January. I notice I get a rash on my chest that comes and goes. I notice it is worse after my shower. My face is red in the evenings also, looks like I have blush on, even though I don't.

I just had my mugga heart scan. My number is down to 53. At 50 my dr. will stop herceptin and perjeta until my number goes up. I am so disappointed. Has anyone else had this happen? If so how long were you off herceptin? Thanks for any info. Renee

Thank you Shutterbug. Hopefully, I will hear from others and how they handled it.

Dear Reneswan, Please don't despair. Last May my echo came back with a LVEF of 10-15, normally they want you to be about 55-60. So off the H/P and on to a bunch of cardiac meds. Also did cardiac rehab. By September I was back on the H/P and maintaining and improving my heart numbers with the meds. I think they are maintenance for me for now. I had been NED befor the heart problem and was soon NED after resuming my H/P. I will admit that I didn't feel that great when my heart was wonky, and at first the meds were hard to get used to to, although is fine now. So I wish foryou rapid heart recovery. Marsh

MarshaMay, I feel so much better after reading your post. Thank you.

Fitztwins, I remember when I was on taxol. I understand the sick and tied. I hope you feel better soon.

Fitztwins 6 treatments every 3 weeks is all it took

fitz--I was on taxol for 18 weeks, every week. I too wanted to quit. I had to take a week off around week 15...I think because of neuropathy. Can't remember, but having that one week off made the rest of it tolerable! The weather sucks, depression is lingering, and you are getting some tough drugs! You are normal! Hang in there!

Macy - losing my hair and eyelashes was so depressing for me. I cried for days when I first noticed it. I did buy a wig and everyone seemed to love it on me. That helped me feel so much better. I wore fake eyelashes for a long time also. It just made me feel better. My hair has grown back but it is thinner. I still wear my wig sometimes, as I just like the way it looks on me. I think what you are feeling is perfectly normal. Some choose to wear scarves or nothing. It's just a very personal decision. Just wanted you to know, your not alone in how you feel.

Thank you for understanding about the hair! I'm looking at wigs and I think I will be fine with a wig for the short-term. But, I wonder if my hair will ever come back? I will likely be on treatment from here on out but will my hair grow back when I'm not on chemo?

Sorry for all these questions.

Ann; slow hair growth--hmmm--I was just thinking my hair hasn't grown much since May when I quit Taxotere. I didn't loose my hair since I used cold caps but I did cut it off short and donate it before chemo started and now it hardly seems to grow. I got it cut at chin length, had it trimmed once shortly after since after donating it I got a rather bad cut. Now, over a year later it's only barely to the top of my shoulders. The hair on my legs and arms is also almost non-existent--that's sort of nice! Weird that h/p slows hair growth tho.

Reneeswan: I too came in with a 53% LVEF on an Echo and my MO is not in the least concerned but I was. You might want to schedule an appointment with a cardiologist to get an explanation and perhaps get a more thorough heart evaluation. If the cardiologist secretary tells you they can't see you and you need to talk to your own Dr ask your Dr for a referral. That's what I had to do. The cardios see a lot of breast cancer women who are having effects from drugs. You could ask him to evaluate your LVEF history, find out if he has recommendation for increasing your LVEF (specific type of exercise regime?), ask if an Echo would be helpful, and ask him to communicate with your MO. I looked at my LVEF history (all 2-D Echos) this week and found mine have been, since a year ago before treatment started: 59%, 55% (toward end of chemo), 60%, 61%, 53% (all P/H). In other words, up and down. The cardiologist said that there is not really a statistical difference in these numbers because some were calculated and some were estimated and there is a certain amount of subjectivity. A MUGA is supposed to be more accurate in terms of LVEF but tells less of a full-story. Also, as I understood it, the Amercian Heart Association is about to come out with new numbers and the new low normal will likely be 53%. The cardiologist is now scheduling a 3-D echo which will give a clearer picture of what's going on with my heart. I don't know what your numbers have been but talking to the heart experts might ease your mind and extend your treatment. Full disclosure, my SO is a cardio-thoracic surgeon--he looked at me like I was a dunce when I told him I was worried about 53% EF.

Michele