HERCEPTIN and/or PERJETA Threads
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Liz, I am glad to hear about your response. That is just wonderful.
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Liz that is wonderful news. So glad to hear it.
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Happy day Liz. May it last forever.
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awesome news Liz!
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Huge thanks to everyone who has sent me their good wishes. I am not under any illusions about NED but after a very tough time, I feel Ican breathe a little.......
Liz x
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That is wonderful news! I have my cat scan next Wednesday after 5 taxatore, herceptin, perjeta. I am still suffering from side effects. Ugh
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Hi Lisa,
The SEs are horrible. HP is tolerable though. Wishing you a positive result next week.
L x
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I heard from the oncology nurse today about my cat scan. She said the oncologist said I had a partial response to my liver mets and have no new progression. My tumor markers are normal. What the heck does this mean? I am non NED and I never will be? The cancer will progress since I am done with taxatore? I am confused. I don't see him until Thursday. I feel suicidal. I cant take this.
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Lisa, generally partial response and nothing new is a positive thing and mets can continue to heal on H&P alone, progression wouldn't be expected, if it looks that way your MO will discuss possible changes to your plan. Many can do well without being NED, please take a breathe.
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Hi Lisa
Are you able to call your onco before Thur?
I agree with illimae that a partial response is seen as a good result. Your TMs are normal and there is no progression. I'm not sure what your plan is but I think you will feel better when you have spoken to onco about the scan. Nurses don't give you that deeper knowledge usually.
Stay strong and see what is said on Thur.
Love Liz
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Lisa, I agree with the others. H&P are a powerful tool and they can and have led people to NED. I am still NED from the neck down and I credit these drugs for that.
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Lisa, just to be clear, I meant my response in a nice way, scared is a valid feeling in general but suicidal is a concern.
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I know you did, suicide crosses my mind when I don't think I can take another scan or hear the word chemo anymore. I have been dealing with this for almost 20 years. I had a nice 15 year remission-and am thankful. I just want more time to see my grandsons grow up a bit more and continue teaching. I have yet to accept this will take my life soon.
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Lisa,
How are you today?
L x
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I am doing okay. Thanks for asking.
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I have been on Herceptin for 9 years and perjeta for almost 3. I have developed neuropathy in my hands and feet since starting perjeta. I have numbness in both hands and feet. I am starting to have some balance issues. I was wondering if any one else taking perjeta has experienced this. I am taking gabapentin for it, but it continues to get worse.
Thanks
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I have not been on herceptin long enough. Hope things improve for you.
I saw my onc today and my new protocol is tamoxofen, perjeta, herceptin. He was happy with my results as even though in still have spots on my liver, I have nothing new. So I am thankful. I hope I can have a good attitude and maybe have remission.....if not, I will take this.
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Lisajo, NED may be a nice thing but stable is also really very good. I am glad to hear your onc was happy as well. It usually reassures me if my MO or RO are encouraged, bolsters my confidence level. I hope the same will happen for you.
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I’ve had over 60 treatments with Herceptin and Perjeta. No pre treatment meds. since completing 7 Taxotere. Had an infusion reaction. It took me a minute to realize I didn’t suddenly have a sore throat while scratching my head and feet! The nurses were quick and I received Benadryl, steroids and Pepcid. Now I will have to pretreat. I’m still itching like crazy today.
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Hi Beatmom,
Do you mean that you had a reaction on HP?
I have mild tingling and heat after a HP. I'm hoping it will not get worse but it obviously is neuropathy.
L
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I didn't realize Perjeta can cause neuropathy. I'm not on it anymore, but have neuropathy in my hands and feet, and just assumed it was all due only to the Taxotere tx. Acupuncture has helped me, in fact, it pretty much resolved the neuropathy in my right foot, at least 90%.
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I will keep acupuncture in mind.
I got neuropathy only in my hands back in 2014 from the Taxotere..now I'm scheduled to have twelve doses of Taxol (after the holidays)..so I am anticipating neuropathy from that, but now concerned about Perjeta also causing it..Is that a common or rare SE for Perjeta?
Herceptin gave me a constant runny nose last time..though my MO said it wasn't from that, but it stopped soon after I stopped the tx, and I was on nothing else at the time.
Needless to say, I have been stocking up on tissues..whenever anyone asks what I need..I tell them a box of tissues!
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herceptin can also cause neuropathy. My onc didn’t believe it, but at the time it was the only thing I was taking. The neuropathy didn’t start until I had been on it for a few years, and when I took a break, it would start getting netter
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Oh boy..it's almost inevitable that it will happen.
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Yes, Jackboo09 , had a reaction to the Herceptin....tight throat, asthma like symptoms, immediate itching head to toe
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I have been on H & P for three or four years now. The nails are definitely a problem. As is stiffness. I find, the less active I am, the worse it is. I try to go for regular walks, do some yoga which all help.
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Hi all
My onco says that HP can cause neuropathy.
I am so grateful to be stable right now but I have major all over body aches, stiffness from these drugs ( including Letrozole)
Reactions and SEs horrible and we face them with bravery. None of this is an easy ride my friends.
L
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Yes, the price to pay to stay alive is not easy, but we women are pretty tough when faced with doing whatever is necessary..I am hoping for stablility too with the H&P..I did tolerate Herceptin well before. Perjeta will be new for me..Whatever keeps the beast at bay!
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So my tumor markers went up fr0m 33-54 since I have been on H & P only. I cannot take this. I just had a scan that my doctor was thrilled about. I still have some liver spots, but a lot are gone. I cried. The nurse talked to my onc and he had her call me to tell me that he is not concerned about my markers, but is happy about the scan. Nothing makes sense to me. I had my last taxatore 6 weeks ago.
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jackboo, the stiffness is difficult, if I am not active then I have that issue too. I do find an hour long walk daily helps a lot. I find I can take less ibuprofen, some days don't take anything at all. If an hour is not possible, breaking it up through the day to small amounts is just as good to relieve stiffness.
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