HERCEPTIN and/or PERJETA Threads
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Lisa, I still try to learn but basically gave up trying to understand or control this disease, too much of a mind F@&$. Since TM’s are known to fluctuate and can just be inaccurate, I would place my trust in the scans and onc’s interpretation. Try to relax a bit I guess, I know it’s super hard
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Hi. I’m starting Herceptin in a few weeks after a muga scan. I had Herceptin for 12 months during my first go around . I did well on it after I finished other chemo and rads. That was over 10 years ago . Mets to bones last June. Spine, vertebra, femur MRI didn’t show brain mets.
Tried Ibrance but I had progression at PET last month. So now we are going to try this. No Perjeta. I will have to ask about that. But I will continue with Faslodex and Xgeva. I’ve got neutropenia. I’ve read quite a bit of the posts here trying to find out as much as I can. Thank heavens for this site. It has been a great source for me both times
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I think the Herceptin drippy nose is real, I certainly had it, and it went away once I stopped H. I've read about many others who experienced it as well. So, yes, tissues always on hand! Luckily, that was really the only SE I had with it.
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I haven't had issues with neuropathy since my last TCHP infusion (July). I did have serious drippy nose with TCHP, but not so much since then. So far, H&P infusions are a breeze; a little joint stiffness, but I stay active (workout 5 days a week, stretching every day), and that seems to help. I'll definitely keep acupuncture on the list of things to try if I do develop neuropathy from H&P down the road though.
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I have the drippy nose. Did not have while on H only but it developed on HP. More of an issue since I walk an hour a day outdoors and it is cold. No other SE on HP.
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ditto on the drippy nose - but it's honestly better and not as noticeable now that I'm growing some nose hair! Haha! Small things y'all!
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Hi again,
The neuropathy flare up I experienced over recent days has eased a little only to be replaced with yet more sinus pressure and pain.
Seems we all report similar things. MommyErin- I want to follow your lead with regular exercise. The challenge is fitting it around my job.
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I am almost two months out from taxatore. I am having a horrible neuropathy flare. My hand hurts and burns.
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lisajo6- So sorry to hear that! What has your MO said about it?
Liz- Yes, it can be a challenge. I guess I’m lucky that I’m basically just working part-time on my PhD when my kids are in pre-school (20 hours/week) and I’m home with them otherwise. My gym has great classes and daycare, so I use that as a much needed break from toddler tantrums. That’s motivation enough for me, lol.
Jill- Hahaha! Maybe the nose hair is why I haven’t noticed it in a while. I’ll take it ;-)
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Thank you everyone who has chimed in about neuropathy, as this is definitely a concern of mine. I have some in my feet, but then again I have brain mets so I have other balance issues as well. I will investigate acupuncture at some point in the future.
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Thank you, everyone who posted about neuropathy. This is definitely a concern of mine, and I will check out acupuncture at some point in the future.
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I am still pretty down about my markers going up to the fifties when they were normal three weeks after I just started perjeta and herceptin only. I started tamoxifen three days ago as I am triple positive. I took tamoxifen for 5 years when I was first diagnosed in 1998. It worked for me then, has anyone had success using it again with P & H? I really believe this will be my last Christmas. So down. Thanks for listening.
Lisa S.
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Lisa, there are quite a few people who have had good success at being NED or at least stable for quite a while on HP and Tamoxifen. Those drugs together make a very effective team.
I am really sorry you are feeling so down. I hope that you are able to talk to support about it whether it be family, friends or a social worker. Sometimes another person can offer perspective.
When I was first dx Stage IV, I felt I would be dead soon after since my single met was in my brain. I considered myself to be dying of cancer. I talked to a social worker in those early days and one way she really helped me was to get rid of the "I'm dying of cancer" thought process. Instead, she wanted me to think of it as "living with cancer" so that tx or SE would not seem so hard. It took me a couple of months consciously telling myself I am living with cancer. I don't bother thinking about how much time I have left. A lot of that is simply how a person responds to treatment which is luck a lot of times. What we can do is live with it and deal with any SE. We can find something to enjoy that has nothing to do with it, go for a walk, simple things. If the dark places are still there and you can't get out, please to find someone to talk to. It can help so much. I liked the social worker because I could talk about things that would have upset my family.
I am by no means OK having to deal with cancer, but I make do, walk almost everyday outside and hope I can keep going for longer with my qol. I hope you get to this point soon. Please keep us posted, don't ever feel you are letting people down or that this is not a safe place to unload some of your pain. Hugs to you. If it is too hard to bear, there is nothing wrong with asking for help ie an antidepresseant if not already prescribed. That may give you a jumping of point to dealing with it.
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Hi Lisa
I saw your post and wanted to say stay with us. We are all rooting for you.
Lovely post Mara. I know your words really helped me tonight too. Yours is the kind of post that I will go back to for comfort. I hope it offers some hope to you Lisa
Hugs everyone,
Liz
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Mara,
Thank you for the kind words. I am trying the "living with cancer". I get my perjeta and herceptin this Thursday. Normally I get my liver panel, tumor markers, CBC done on the day of treatment. Then it takes forever for results. So I called and am getting my blood work done today. That way the oncologist has it all when I get there. I hope the tamoxifen brings my markers back to normal. I have only been on it a little over a week. So worried about liver panel too. I still have bloody noses and crusty blood in my nose. It started during taxatore. Anyone have this?
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I had that too Lisa. It is normal, I still have a dry nose on HP but it is not crusty. That should go away. If not, petroleum jelly (applied with a Qtip) can be used to lubricate your nasal passages. Use just a little bit. It will help that dramatically. I usually will do that before heading to bed. My hands and lips are also very dry. Only other thing is to hydrate alot. I have to use that stuff if the drippy nose gets too annoying. I suspect the drippy nose can be attributed to being dry up in the nasal passages. Good luck on the liver panel but keep in mind it has only been a week if the numbers have not changed too much.
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I had a crusty nose inside right after I began TCH treatment in 2014..It continued for several months after the final Herceptin a year later.
Now I have it again after starting AC tx in October..I therefore believe it to be an allergic reaction to all of these drugs, since I have not yet received my first Herceptin/Perjeta this time around, I cannot blame it on them this time.
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Well, markers up to 77. Had my perjeta and herceptin today. I will have to go back on chemo is about six weeks if my markers keep going up. Yet he tells me I am doing well. There is a node under my left arm. He said I am doing well? I am at my wits end.
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Lisa, I feel like I am in the same boat, my markers are up from 49 to 70 in last 2 months. Saw onc. yesterday and he said he wants to wait and see and says I’m doing well. The waiting drives me nuts, but I know the markers can jump around. I do them again in 2 weeks. Hope yours go down.
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Best wishes to those dealing with tricky tumor markers.
I just finished 6 rounds of taxol with H&P and will be moving to just H&P in January. Do they usually do premeds for this? How long do your infusions take from when you walk into the treatment room to when you leave? My Taxol was all day (from 8:30-4:00) so I’ll be happy for any time I get back, but I’d like to have a general idea of what will be happening.
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Henrietta.....it will feel so good getting off that chemo....remember to give yourself some time. I felt so much better I jetted of to new york...it was too soon and I made myself ill. H&P generally require no premeds and the infusion is half hour each. I'm usually in and out in two hours tops. Sometimes I have to wait for nurses or pharmacy....but it is usually quick.
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Thanks, kkrenz! My 5th out of 6th chemo hit me a lot harder than the others so I have already been trying fo mentally prepare myself for not immediately bouncing back. I’m really looking forward to less time in the treatment room, though!
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Henrietta,
Life is so much better on HP but I so agree with Kris about just taking it steady at first, although you will notice an immediately improvement in terms of energy and side effects. Initially I felt tired on the evening of HP infusions but I can't really notice a difference these days.
Good luck and let us know how you get on.
Do you have a port by the way?I am still battling with weary veins.
Liz
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I do have a port and happy to have it to save my veins!
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I have a port as well....best thing ever!
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Does it limit you in any way; swimming etc
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Nope, once it is healed, no limits. I’ve had mine since the end of August and don’t even notice it any more.
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I have had no issues with mine. Sometimes the skin over the top gets a little sore if something rubs on it....like a seatbelt...but way worth that minor discomfort.
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Since I started herceptin perjeta, and tamoxifen together, I have terrible joint pain in my shoulders. It makes it hard to sleep. I use a heating pad, but it does not seem to help. Also, the zoloft has not kicked in-and I am so terribly depressed and so afraid of the dying process I will have to face. I also don't think I want to do anymore chemo if this combo does not work which it must not be since my markers are already going up. I wish I was more positive and I am sure you all are sick of me whining-but I have no one to talk to about the reality of mets. My family is in denial....If I could just accept this as my fate. I don't even feel good enough to go back to work. I spend all my time lying down.
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Lisa, I’m so sorry you are feeling this way. I have no advice, but hope you can find some pain relief. I’m thinking of you.
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