HERCEPTIN and/or PERJETA Threads
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Hi Liz, i am in the UK too. I did two taxotere at full strength (which is a reduced dose when given with H&P anyway) and then it was reduced as I had a horrible infection and bad neuropathy, so did three cycles at the reduced dose and skipped the sixth as I wanted to go on holiday and would not have had the energy to go. My once said she considered stopping the H&P after dose 2 because of the infection, she said the ongoing protection of H&P was going to be the important thing on this protocol. Generally the medics seem pretty laid back about stopping the tax early as long as you keep going with the H&P. But don't take my word for it, speak to your onc. If you are getting fatigue and neuropathy then the dose can be reduced by about 20%, made a huge difference. Any thing else I can help with, just PM me. Boo.
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I haven't been on here for awhile. I've been on P&H for 3.5 years. NED since Taxotere was finished.
Liz: my MO used the Cleopatra protocol which was for 6 rounds of Taxotere plus H&P. It left me with low tumor markers which have stayed low and neuropathy in my toes and a bit in my fingers which hasn't gotten better in 3 years. My toes aren't painful but I don't have good feeling in them. My MO has several patients who have been on this protocol and a few of us have done well. I think she wants to kick the crap out of the mets before leaving it up to the H&P. She also is concerned with quality of life but wants life for her patients. I think it's hard to be an oncologist. They know so little about what they are dealing with and they try so hard. At least mine does.
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I'll chime in that I also did 6 rounds of TCHP. I am stage 4, but had a window of stability with nothing detected on scans after the 6 rounds, so opted for BMX. Pathology from that was complete response. So, I truly believe this cocktail packs a powerful punch as my original tumor was 7cm!!!
I know surgery is controversial, and in some way it feels the plan after for adjuvant chemotherapy feels a little murky. I have an MRI of my liver next week to see where we are and I'm anxious to start back on herceptin.
Keep going strong ladies! That round 5 & 6 of the taxotere was rough - just think of all those cancer cells being obliterated
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and amazonmich - thanks for coming back on to update us! that is so encouraging to hear!
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Hello ladies,
Just came across this discussion and noticed a few familiar faces. It's so great to read about how well some are doing on H&P long-term. So reassuring!
Wanted to share that I've had a great response to TCHP. I'm 4 treatments in and my PET last week showed liver spots and breast tumors are gone, and no new cancer anywhere else. My liver spots were actually undetectable with MRI and ultrasound after two TCHP treatments, so this cocktail works! Like livebig, since my scans are looking good, a BMX is my next step after my 6th round of TCHP.
Regarding SEs, I've been icing my hands and feet during treatment, so neuropathy has been mild. I've been feeling surprisingly well starting about a week after treatment, and I've been able to keep up with my aerobic step and body blast classes at the gym (I take chemo week off though). Hoping this continues with #5 and 6. I'll definitely be glad when the T and C parts are over. I'm pretty much a zombie for a week after each treatment. I know it affects everyone differently though. And I'm fairly young (31), so that may have something to do with me bouncing back.
Wishing you all the best and hoping to read lots more positive reports here going forward.
xo,
Erin
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Hi Erin
Fantastic news! I have sent you a PM. Nearly there and then you can drop the chemo! X
L x
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I have been taking Herceptin and Zometa since January, 2010. Perjeta, Tykerb, anything like that wasn't on the market yet. So I am still on my first line of treatment (after taking aggressive A/C and Taxol) and have been NED since May, 2010. I go every 3 weeks for Herp, 6 months for Zometa, and 6 months for Echo. I have scans every other year. I'm due for one in October.
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Wow! Congrats cafelovr, happy to see this treatment working so well for you.
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Amazing Cafelovr.
Best wishes to you and thank you for posting!
Li
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I really hope that you can find all the resources that will help you. UNC and Dr. Anders are wonderful--she has saved my life!!
Bless, heather
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Cafelovr- so happy to hear you continue to be NED after 7 years! It gives me hope.
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Illimae the red random rash (upper body chest area) and itchiness gets better. It will be two years July 31 for me and all my side effects have improved...even the diarrhea!
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Bstein, good to know. It only lasted a few days but was really annoying and hard to explain when you look all cut up like it got scratched by Edward scissorhands.
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Haha Edward Sissor Hands! Super itchiness and weird rashes have definitely decreased. I did see a couple dots on my chest today...yeah it's working because I haven't seen that in months
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I agree, the itchiness does get better but for me, it hasn't totally gone away and it's been 2 years. My MO said to make sure my skin is moisturized to cut down on the itchiness. I do put coconut oil on it and it feels better.
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I recently went to see a dermatologist about the rash and itchiness. Mine is really bad - legs, arms, back, chest. The dermatologist took a biopsy that tested positive for a drug reaction, so no surprise there. She suggested that I up my antihistamine use, so I'm now doing 10 mg/day of cetirizine and considering going higher. She also prescribed a steroid cream, which is helping with the healing, as well as a cream with menthol for the itching, which doesn't seem to do much. I've been on H&P since September 2016, and the rash has gotten worse, not better. Hoping to get it more under control.
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For those of you getting rashes, did they start when you were receiving H&P+chemo, or when you switched to just H&P? Thanks
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I got one cycle of Perjeta by itself as part of a clinical trail at MDA in January and noticed the dry skin only. I had the rash the day after chemo (which was weekly due to taxane reactions) throughout but it continued with H & P only and lasted longer, I suspect it was caused by both but now I don't have the premeds to minimize the effect. I think I'll be taking a Benadryl before each infusion.
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I use Aveeno baby wash and lotion. These both healed and help prevent future rashes. I still itch a couple days post infusion, not as much as before.
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My rash got noticeably worse after about 4 months of H&P plus Taxol. The rash has continued to get worse after I dropped the Taxol in March. Another thing that helps is taking lukewarm baths with about 1/2 cup epsom salts and 1/2 cup sea salt. If the bath is too hot, though, you can get a histamine reaction.
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I have 2 more chemo to go before starting maintenance HP. No rash so far but of course I take steroids.
Is there anyone who has returned to work on HP only or is this a crazy idea. I am a teacher so have been warned about immunity already on HP.
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Oh and I would be interested to hear from anyone who either chose or felt compelled to drop Taxotere before completing the 6 treatments.
Wondering whether to call it a dayat 4???
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I didn't "drop it" but couldn't tolerate taxotere or taxol due to severe allergic reactions, we went with Abraxane, which is easier on the body and is delivered using human protein instead of a chemical. Perhaps you would have the option to change rather than stop.
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Thanks Illimae
I am getting Perjeta as part of the Cleopatra trial currently. I can stop Taxotere now and continue with HP but not sure about another chemo.
I think I'm just getting to the " had enough" point!
I wonder if there is any point in trying to get that magic 6 in. I might not get to NEAD even if I do and you can continue to have shrinkage on HP alone.
How are you finding life now on HP?
No easy answers!
Liz
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I assume studies show that 6 is better than 4 but can't say if it makes a big enough difference to continue with troubling SE's. I will say that the standard protocol has worked well for me. Currently, I am recovering from surgery and have only had two maintenance H & P cycles, it may be a little time before I know how everything works for me.
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Jackaboo - I am a university professor. I have been in treatment since June 2015, and have worked full-time throughout. The farther I get away from the Taxotere (I had six rounds that ended in October 2015), the stronger I feel.
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Hi scrunchthecat
Thanks for your post. I am willing myself on to complete the next 2 Taxotere and I hope to go back to my English teaching job on a phased return basis.
Great to hear that you are doing so well.
Li
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I am approaching the 3-year Mark of living with stage 4 bones only. But I can tell you I only did 3 rounds of taxotere before I had too much toxicity and they quit it but I've been dancing NEAD for over a year now
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Hi luv2fish
My oncologist is monitoring me at each cycle because I have mild neuropathy at the moment. I have done 4 Taxotere now. It isn't any worse but he doesn't want neuropathy to become more severe.
I have had a good response and so will do 5&6 unless side effects suddenly worsen.
I do wonder how I will feel if I don't achieve NEAD at the end of 6 though?
My tumour is in the mediastinum and is now just 11mm.
Thanks for your post and delighted on your NEAD.
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I returned to work a year ago. Just part time though. I had 8 rounds of taxotere which ended Jan 2016. When I first returned to work I remember a lot of diarrhea and rashes on my chest...often thought "what am I doing here!" It's been two years since diagnosis and 1 year back at work. I really feel great now. I have hair and eyelashes. Just finished targeted radiation to the tiny liver mets and finally have clear scans! The three liver mets continued to shrink on H&P only and when they stopped shrinking we radiated them (SBRT). (There was no enhancement on MRI so it could have just been residual necrosis, I never get PET scans but why take the chance)
I don't have neuropathy but I was diligent with icing as I wanted to make it the 8 rounds. You guys can do it, "This to shall pass."
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