TRIPLE POSITIVE GROUP
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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
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That is such great news angelsgal. Happy for you.
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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
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Jaboo- your hormon therapy is taken by shots instead of pills? I thought hormonal therapy is anly in pill form.
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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
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Margun--Herceptin is given by IV in this country, although a subcutaneous version was approved by the FDA in February. They've been using shots in Europe for quite a while. Looking forward to when that becomes the standard in the US.
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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
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Margun, as Ingerp said, I received Herceptin as a subcutaneous shot which was very convenient. And yes, my hormonal therapy consists of shots every 4 weeks to put my ovaries to sleep (Zoladex) + a Tamoxifen pill every day.
My neuropathy has dissipitated. It was quite bad during and after Taxol. I feel only a small pin now and then in my feet or toes. Otherwise nothing else.
Ingerp, thanx for the tip. I remember you planning to go for a holiday after chemo and then again after Herceptin. What a great way to celebrate. However, it's not possible for us (from "nice" reasons - new pet animals at our home). We have to think about some way to celebrate.
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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.
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j414,
My treatment was just like your cousins except I was also on Carboplatin. For the first round of chemo I would recommend to your cousin to just see how things go but also being very aware of the potential side effects & be ready to manage them. Unfortunately everyone reacts a little differently & you don't know until you go through it. With my treatment I ended up learning that the diarrhea from Perjeta didn't kick in until about day 6 after chemo & then I would take Imodium daily (& more often throughout the day when needed) for about 5-6 more days. For 6 Chemo treatments I went through 2 small bottles of Imodium!!!
The first 4-5 days after chemo I struggled with constipation so Smooth Move hot tea was my go to, along with Miralax. My belly was all messed up.
Fatigue, & I do mean serious fatigue, was one of my worst side effects. The day after chemo, I felt like I had lead in my body. Everything was heavy feeling & I was just wiped out for about 4 days after. As chemo went on, the fatigue was harder to get over.
Praying for your cousin, that she may have the physical strength to fight this nasty disease.
Angie
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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.
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Thank you for sharing your kadcyla experience, angelsgal. I’m hoping it’s easy, too. I’m so happy to hear your good news
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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!!
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I have blood work every time I go in for HP (I have 3 infusions left), and see my MO. The only side effect I have is the lovely diarrhea, drippy nose, and early bedtime. Hugs, Lisa
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MissouriCat-those are side effects from herceptin or Arimidex has also has some role? Do you have Se from Arimidex
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Margun, Herceptin causes a drippy nose and the diarrhea is from Perjeta. Not sure if my bedtime is related to infusions or anastrazole (Arimidex).
I have been on anastrazole approximately 6 months now. I take a multitude of vitamins and sleep with a bar of Irish Spring, but have found I have bad leg cramps on the generic medication, I've tried 4 different brands. After a bout with my insurance yesterday, I ordered the name brand once again from Eagle, it is now $60 instead of $30, but the name brand does the best for me. Everyone is different. My doctor told me yesterday I could switch to letrozole (Femara) and, after reading about that on here, I have decided to pay the $60 for the next 6 months, then it will be a year, and some say it gets easier after a year. I don't know if that is true. I've heard of folks having joint pain and hot flashes on anastrazole (Arimidex), but for me the main problem is leg cramps and sometimes being unable to get up off the sofa for pain in my thigh muscles/weakness to get up. I've heard to take magnesium and drink water and I do that. I keep searching for the secret solution!
If anyone has any statistics on the percentage these AIs give you in keeping cancer from returning, I'd be interested in knowing. There are days I'd like to quit, those are the generic drug days. Hope this helps. Lisa
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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?
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Margun, I could not answer which is better tolerated, having only been on anastrazole. Maybe someone else here can help with that. But, I can tell you I've worked through chemo, surgery, radiation and now the hormone pill. You can do it!
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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
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AngelsGal, wow, I would like to know more on that too please. My husband commented just last night, what else do you think not producing estrogen is doing to your body?
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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!
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Just re: SEs of the different AIs, I asked my MO why I was starting on Anastrozole and she said it's the one that her patients have had the fewest problems with.
MissouriCat--have you run any of the predictors?
https://breast.predict.nhs.uk/tool
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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
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Ingerp- the predictor does not consider herceptin. The predictor gave more sober survival rate than my BS.
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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.
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Taco - Glad to hear Letrozole is working well for you. I switched to it about a week ago and would be *thrilled* to see diminished hot flashes.
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JaBoo:
Congradulations!
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Hey everyone. I finished weekly Taxol today, so I don’t go back to MO until three weeks for Herceptin infusio. Forgot to ask my doc - will I get all the pre meds each time I go for Herceptin? Hope not.
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Not sure what you mean by "Pre meds" I get tylenol and benedryl before every infusion.
This has probably been disgussed over and over here, but is black cohosh ok for triple positive folks like us? Everybody keeps telling me to take it because it helps with the hot flashes, which are terrible for me. Of course I'm asking my doctor first, but wanted to see what thoughts were here.
Side note: I started taking Biotin about 6 months ago, in an effort to get my hair back. It's not working for the hair, but I haven't had diareah since.
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Margun--Trastuzumab is Herceptin (see lower left under "Chemotherapy").
Wheatscapes--no pre-meds for Herceptin only. That said, those appointments always seemed longer than they should have been for what I told myself would be a quick 30-minute drip. I checked in with my MO or her PA every other time, which added about 20 minutes, and I got an IV every time, which meant pre-warming my arm, getting the IV, waiting for the H from pharmacy, . . . . Seemed to always take like an hour and a half.
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