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Old 04-03-2018, 03:25 PM   #41
Unclaimed
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Re: In Praise of Perjeta

Hi Julie
Thank you so much for responding! I'm sorry to hear about the bone Mets. I have that as well and also take Capecitabine for it. I'm relieved to hear people are doing well on Perjeta even after many years. I'm so new to treatment, only 2 Herceptin infusions, and my 4th round of Capecitabine, and am so afraid of the effects the treatments are going to have on my body. I'm really afraid to add Perjeta, but in a way, afraid not to as well. Thank you again for sharing your experience on Perjeta with me. 💜
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Old 04-03-2018, 03:55 PM   #42
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Re: In Praise of Perjeta

Hi Unclaimed

I have been in treatment for over 5 years now!
Currently on Kadcyla. Had a few treatment breaks recently because bilirubin too high (a side effect of Kadcyla) but other than that I feel well.
I think it's worth trying Perjeta.

How are you finding Capecitabine?

Juls
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Old 04-03-2018, 04:17 PM   #43
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Re: In Praise of Perjeta

Hello, sorry my phone changed your name last time, Juls!
I'm happy with Capecitabine. I wasn't willing to do IV Chemo, and had no idea there were pills as an option. I thought I was get a diagnosis and just die because there wasn't anything else. The normal regimine is 1250 mg twice a day for 14 days, but I take 2000 mg twice a day for 7 days. There is a 7 day break in between. The shorter time works well for me, even though it's a higher dose. I haven't had any stomach problems. I use coconut oil and Lubriderm lotion on my hands and feet many times a day, and haven't had any peeling skin. The first week I took it I did get mouth sores, but now I brush my teeth and rinse with baking soda and warm water within 30 minutes of eating, and I haven't gotten anymore. I do the mouth and skin care even on the off weeks. I'm really thankful for Capecitabine. Are you doing well on it?
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Old 04-03-2018, 04:50 PM   #44
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Re: In Praise of Perjeta

Hi

I was on Cap for a year. Initially 1750 twice a day for 14 days with 7 off. About 5-6 months in bilirubin went up ( a known side effect at 5-6 months of treatment) so dose reduced. A few months later dose reduced again (for heartburn). Think it went down to 1250mg. Skin ok - used udderly cream occasionally. Again pretty easy to do as long as you take with food! Now on Kadcyla since last March.
Juls

PS - Phone was correct. My name is Julie!! lol
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Old 04-03-2018, 05:58 PM   #45
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Re: In Praise of Perjeta

Well hello Julie, I'm Ana. I had to Google bilirubin, I'd never heard that before. Google says caffeine lowers bilirubin so that's my cue to indulge my coffee addiction 😄☕☕ All these medications are so powerful with horrible side effects. I've been a healthy active person, and always used simple natural remedies combined with healthy diet and significant level of exercise. I'm not doing "sick" very well at all. It seems a longer lifespan comes with debilitating side effects, and it's hard to figure out how to manage it all. I want to look good and feel good, I don't just want to be alive, I want to live. I'm hoping the Perjeta will allow me to do both. Thank you again. Have a restful night 🌛
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Old 04-06-2018, 07:44 AM   #46
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Re: In Praise of Perjeta

Hi Anna
Just reading your reply - haven't logged on for a few days.
Hope you are ok.
Like you I was rarely ill, had good diet & active. Not into exercise though ( My Daughter & her Husband are Personal Trainers & have a gym so don't really have an excuse!)
It's been over 5 years now since diagnosis in Feb 2013 - Med team thought I was stage 3 & didn't do further tests for 3 months. When scans done had tiny liver met so stage 4 from May 13.
I have felt pretty good through all treatment & do exactly what I did before diagnosis except go out to work! It does take time to get your head round it.

I also read that bilirubin reduces with caffeine so that's my excuse for drinking coffee as well. Got to have my coffee!!

Take care
Julie
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