TRIPLE POSITIVE GROUP

I have a question. I had labs done last week before my Kadcyla infusion. The results are in the portal and I noticed I was checked for Estradial for the first time. The result was <5. My original biopsy had my ER 100% so I'm guessing this is good?

j414--I can't answer all of your questions but can share my experience. I never had any nausea, although I took the anti-nausea meds for a day or two following every treatment just as a precaution (I had them, so why not?) (I also think they helped me sleep--the steroid pre-med can make that tough). I also never had any diarrhea, although I hear Perjeta can be rough that way. *If it were me*, I'd take some Imodium for a day or two. Others who have had Perjeta will weigh in. I think by about the third chemo, I was losing my hair quickly enough that I cut my hair down to about an inch, and buzzed it very short about a week after that.

I'll tell you what I've posted often--I *really* pushed protein through chemo, and I'm sure that helped to minimize my SEs. My blood counts stayed good throughout, and my MO told me I was the only patient she'd seen who was actually making blood through chemo. I ate red meat 5-6 times a week, ate an egg every day, and had a protein shake every day.

Paloma1211,

I took Kadcyla when they saw an increase in size of my lung nodules, and some illuminated cells in the lymph nodes near my lungs. I only had the issue of tremendous fatigue and diarrhea with it that I recall. That was a year ago and I did 8 treatments finishing up in January of 2019. I have been on AI Arimidex after trying 2 others, Tamoxifen had horrible leg cramps and Aromasin that was a steroid complicated my diabetes medications. I am doing well on the Arimidex and think I can actually see myself making it through the next 4 years on it. I hope that the SE's dont change or get any worse with time.

I hope that your experience with Kadcyla is positive. I have been cancer free for a full year and the illuminated images that were picked up in the PET scan turned out to be scar tissue and inflammation, not cancer. 2 PET scans this year both confirming that. Halleluia!

Angelsgal57

Thank you, Ingerp! She will like the pushing protein approach - she's a healthy eater, but she also eats foods that serve a therapeutic purpose (e.g. almonds, apple cider vinegar). I have heard the same about Perjeta - I will talk to her oncologist tomorrow, line up the scripts just in case and keep some Imodium on hand. Right now, her hair is very long. I will talk to her about taking off some length in the next week and more around the second round of chemo. I just don't want it to fall out in long strands. I think that will be very hard for her. Thank you, again for your very thoughtful response.

Best,

J

tomorrow will be 8weeks post chemo (Ac and taxol). I am only on herceptin now and eventually on hormone pills. My neuropathy is decreasedbut feet and hand bone pain despite some decrease still appears periodically. Anybody experienced this much lingering bone sensitivity and when it will go away completely?

Are the hormonal pills' side effect is manageable for you Please indicate what pills you take, why your doc chose that one and what se are you experienced? T

Ingerp- did you had lingering neuropathy and joint/ bone pain after taxol. I still have some neuropathy and local on and off bone discontent. Bone discomfort is worrying me mostly. How long it took in your case that the neuropathy and bone/joint discomfort diseapeared completely

I never had joint/bone pain. I had a little neuropathy on the bottom of my feet and it’s still there although not as noticeable. I know nerves are slow to heal.

JaNoo- besides neuropathy, did you have lingering bone pain after taxol. I do not know if I should worry or not and I have a doc appointment only in 2.5 weeks to tell him about it. I know some people complained about bone pain after Taxol which disappeared within 6 weeks. I am 8 weeks post chemo.

j414 - I am on the same treatment protocol as your cousin. I am currently Day 5 post treatment and it has not been bad at all. Do push protein and lots of water the day before, the day of, and the day after treatment.

The diarrhea showed up Day 3 but I’m sure the fried rice I had for lunch didn’t help! 😬 I took two Imodium and was fine. I had mild bone/muscle cramps the same day but it only lasted a day and was not constant.

I am taking my anti- nausea meds routinely except I cut out the mid- afternoon Zofran. I also take a 550mg ginger tablet every morning. No nausea so far.

Fatigue does get you but nothing I haven’t been able to push through.

Some on this protocol have had acid reflux but so haven’t experienced that. Just burping more than usual. Also, my taste buds started getting wacky about Day 3. You can’t really taste anything but salty and sweet. This should subside the week before I go in for the last next treatment.

Most importantly, your cousin can do this!!

MissouriCat-those are side effects from herceptin or Arimidex has also has some role? Do you have Se from Arimidex

it seems that anastrazole is better tolerated that letrozole? I am still working. Do you think that one can do her job as before and keep good energy level during daywhile taking anastrazole?

Margun and Missouricatlady;

And any one else for that matter, I have had the best results with Anastrozole. Tried Tamoxifen and Aromasin both with different negative results. I have been on anastrozole for 8 months and it has the most tolerable SE's.

BIG QUESTION: I have read one of the least talked about effects of hormone blocking therapy is its effect on the brain. Estrogen is a key hormone in brain function, and protection against Anzheimers. I read an article on the American Cancer Society website that AI therapy drugs that block Estrogen effects cognitive function, memory, and other key parts of the brain.

Has anyone else read up on this. Would like to know more.

AngelsGal57

Hi ladies- yes, it is true that a lack of estrogen does impact your cognitive abilities. BUT, exercise is proven to balance that out:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC56511...

Great news. Get moving!

Ingerp, THANK YOU - I've not seen this one, going there now and will have hubby help me if I don't have the cognitive ability, mine was small to begin with! I appreciate your thoughts on AI SEs. Anastrozole is it for me, thank you kindly, hugs, Lisa

I am happier on letrozole than astrozole (and therefore my DH is too) but I think it's individual choice for each of us and for which one MO starts us on. I made the change at about 8 months and have taken two 1 week breaks. Hair is thinning but hot flashes have greatly diminished (which if you think are embarrassing at 40, think about at 70). I attribute joint pain to arthritis, not AI's. I had had two orthopedic procedures before BC.

Also, don't get ahead of yourself in anticipating SE's. Hopefully you have a MO who will work with you for the right fit. There is a thread "doing well on AI's" which you may want to check out.

Try to get some kind of exercise. Also, even though it's getting cooler, don't neglect hydration.