HERCEPTIN and/or PERJETA Threads
Comments
-
thank you LoriCa, that's my luck with attracting worse on top of the bad 😆
They taken 3 hours just to do all paperwork. They wanted to observe me 1 hour after P, 4 hours after H and I stayed for one hour after chemo as I was wearing a cold cap.
Had a friend for about an hour but honestly it did not change much - I had my phone and book with me and was ok , just exhausting. Next infusions will be quicker as there will be no long observation .
0 -
Three hours for paperwork and four hours observation after Herceptin, all on the same day? Yikes! Some of these places really need to spend some time in their patients' shoes to understand what they put us through.
0 -
I was shocked today at the hospital - our MO (we were forced to leave our wonderful previous MO because of some stupid NCI reorganization in spring), after looking at papers coldly said "oh, these additional non-standard treatments you get, this mastectomy and radiation, hopefully they will improve your survival". I was really so shocked that I could not say anything for the moment but then after leaving the consultation room for HP infusion, and seeing my wives teary eyes, my blood started boiling. How on earth can she say that when we go through all this with our 4 year old son on our hands, ho on earth can she say that when my wife's MRIs, CTs and ultrasounds never showed any signs of any organ metastases in past 1.5 years after initial treatment, how are we supposed to believe in our healing if our main doctor doesn't??? If she would only spend a month in our shoes... I am usually a calm and understanding person but I think I have to step up here and go to the head of the department. Not for complaining, just to ask to talk to doctors, so that they understand us and not talk like that... damn, I never thought I might get so sensitive but here we go:/ Saulius
0 -
Anotherone - that all seems pretty ridiculous that they made you stay for four hours for observation. Crazy! I've never heard of such a thing. Hopefully next round will be better. Side effects vary, but if you faster for days beforehand, you may have minimal effects. I have never had Abraxane so I can't comment on that, but Perjeta can cause diarreah. However, many chemo agents cause constipation, so maybe it will balance out. Hope you have an easy go of it.
BSandra - I'm so sorry you had such an insensitive MO. Some of them seem to forget we are actual people with feelings. Hopefully once they get to know you a little bit they will have a better bedside manner.
I'm so lucky that I have been with my MO for 12 years now (original diagnosis in 2007, and mets in Dec. 2015), so she is a trusted teammate. I adore her. She gave me my scan results today (along with a hug) that shows I'm still stable - no progression - and heart LVEF is still over 60%. This HP stuff is a marvel.
0 -
DGHoff , they said someone has a reaction after 3 and a half hours. Yes subsequent times will be quicker - it was just the first one. Hopefully will arrange it at home.
I am laying on a mattress as I type ( not on a bed because the bed was my ex partner's who just moved out last week and take it with him) and feeling everything around me is disassembling as a picture in a kaleidoscope and I start to realise the next stage of my life may have a very different picture.. The magnitude of change is huge. I feel as if I was a cocoon and it what is going to come out of it is unknown.
0 -
Hi everybody! Reporting in on the shot. I first had to go to my doctors office to sign off on a consent form.... I guess they make you do that, even though it's the same treatment - just different way to treat. The shot was fairly easy. I was prepared for the worst because I think I read somewhere that it was painful. They only give it to you in your leg - upper thigh, and they alternate every time you go. Alternate legs, I mean. They give it over "2-5" minutes depending on your pain level. The slower the better. It did burn a little at first and then went away, and I swear mine was done in under 2 minutes. That was it! Done! I do think the cream would be helpful and a nurse in my doctors office actually suggested that, but by then it was too late for me the first time. I will put it on next time - the opposite leg - upper thigh in the fatty area. I got the impression that is the only place they can give it to you. The site of the shot did get red and supper puffy..... but it went away quickly. No real SE's beside the normal fatigue that I get. The nurse that gave it to me said I was only the 3rd to have it done at the whole hospital! Also, from now on I don't go to the infusion center to get it done - I just go to my doctors office and they do it there, which will be very nice. So all in all - YAY! Much easier! Once a quarter I will still have Xgeva and on those days they will do labs first, so that will take a little longer, but in between I think no more than 1/2 hour.
Exciting! We are making progress! I'm still crossing my fingers that I will be around when it's finally in a pill form, but for now I am as happy as someone that has to get cancer treatments once a month can be!
Thank you for the article on H/P shot. I dropped Perjeta a long time ago but if it's that easy to get, I might try it again just to see what happens. ( I had horrible SE's.)
Have a great weekend everybody!
XO
Andi
0 -
tx andi
Have a good weekend xx
0 -
I just switched oncologists and she was like 5 years on Perjeta? yea, time to go off of Perjeta despite liver mets. Yea!
jg27015: after 5 years on Perjeta went off to only subcutaneous Herceptin. Itching has stopped and so have muscle cramps. Feels like a miracle.
Andi67: THE SHOT!!! I've had 2 with no pain or anything! It's so nice to be portless--especially since my shoulder pain has diminished and I can wear a seat belt without port pan!!! The better the nurse is at giving the shot slowly the better. Really it only stings a bit if it's too fast.
The best to all--
Michele
0 -
Thanks for the report on the shot, Andi! That sounds great! I asked my onc about it at my last visit. She said they don't have it at our clinic yet, but it will mostly depend on what insurance companies will say. My guess is that it will be a lot cheaper, which means they will definitely prefer that option over the infusion option.
Michele - that is interesting to note that your onc said that five years of Perjeta and it was time to stop it. I haven't heard how long people stay on the drug, so I'm always keen to hear everyone's stories. I'n January it will be four years for me. If I could get rid of itching and cramps, that would be truly miraculous as I sit here right now with a super itchy neck.
0 -
Well ladies, I am moving on. I haven't been able to stay stable on H&P and adding a harsh chemo or local treatment to it is starting to get old because as soon as we stop the cancer starts spreading again, and last time the chemo didn't work at all. I'm dealing with substantial progression once again and I had a choice to make. I asked to try Kadcyla this time, at least it seems like it won't be as harsh as eribulin or others my MO has been discussing and maybe I can get through the holidays feeling better than I have the last two years on chemo (Christmas on chemo really sucks!). And at least I'll get to keep my hair for now. If Kadcyla fails too, I'm sure I'll be back to Herceptin plus a chemo. I asked my MO if he thought the Herceptin was completely pointless for me, but he believes it is slowing down the progression even if it doesn't completely stop it.
I'm happy that so many of you get many years on H&P (and a bit jealous that I wasn't one of you). I wish you all the best and many more years of being stable or NED on H&P!
0 -
wishing you well on kadcyla. It is frustrating that there seem to be no rhyme nor reason to responses to H&P. We can only hope we will be lucky while accepting with a bowed head when we are not. You have welcomed me to this thread as I just started and now you are leaving ...
I wish they find out what makes cancers tick with H*P and you can come back to it and stay on it..
0 -
Sorry LoriCA, I wish to great luck!
0 -
Thank you Anotherone. I hope you have a good long run on H&P because it's fairly easy to tolerate once you get used to it, not bad at all for a long term treatment.
It is frustrating because multiple biopsies and genome sequencing have confirmed that it's strongly HER2+++, so there's no reason I shouldn't I respond to Herceptin. But another Stage IV woman in the IBC thread said today that she wasn't able to stay stable on H&P either, so maybe it has something to do with IBC's aggressiveness, or IBC's inherent resistance problems. Who knows. There is still so much they have to learn about all of this.
0 -
Thank you illimae!
0 -
LoriCA, My sister is law is on Kadcyla after H&P failed for her, she is doing great with it. I wish you luck!!
0 -
That's great to hear BigPeaches, thank you!
0 -
LoriCA. Aw dang! I'm sorry it didn't work for you. I hope that you might consider posting here about your experience with Kadcyla. Would that be alright?
0 -
Hawkeye I'd be happy to, I know that many women on this thread will choose Kadcyla if/when Herceptin fails.
0 -
LoriCA, I will miss you! Please do keep us posted on Kadcyla, since so many of us will probably be going that direction at some point. I am glad you are going to get to enjoy the holidays a little more this year.... I remember going through them on chemo, and it totally DID suck... the one time in my life I actually lost weight in December instead of gaining. Big hugs, lots of love, take care and come back and see us!
XO
Andi
0 -
Lori,
I echo Andi’s post above. Please keep in touch. Wish you all the very best with Kadcyla.
L
0 -
Thank you Andi and Liz!
I won't stray too far since almost everyone who is HER2+ is in this thread, there doesn't seem to be much action in the Kadcyla thread, and besides I'd miss you guys too much! Just had my first infusion this morning, did the full complement of pre-meds (steroids & anti-nausea) and a 90 minute drip until we see how I handle it. Chemo nurse said that icing is a good idea to prevent further neuropathy so I will do that next time.
0 -
Stay with us Lori! Wishing you all the best.
0 -
Lori, stay with us for sure. If the other thread does not see much action, it would be good to have you here.
Also, you are moving on to another line of treatment that if we progress, would most likely be moved to. Your experience with Kadcyla would be helpful to hear about so we can gain some knowledge about it.
0 -
Dear Lori, I wish you all the best and, please, don't leave us. You have been a big support here, I hope we have been for you too, although sometimes you were so stoic and strong, that I did not know what to add:P You are really an example, yes you are. I am sure TDM-1 does well for you, part of Herceptin keeping your inner organs safe, and Emtansine killing off what still threatens you. I also hope DS-8201 and other powerful ADCs are approved soon! Saulius
0 -
Saulius you made me chuckle when you called me stoic, I've been told that often throughout my life. This community has been a great source of support for me. I often lurk even when I don't have the emotional energy to post. I value your friendship and support, and I admire how strong you've been in supporting your wife.
DS-8201 doesn't excite me much, I have concerns that so far there has a 50% rate of Grade 3 and higher Adverse Events, a few deaths caused by the drug, and the rate of Interstitial Lung Disease that has been high enough to warrant an outside independent agency to monitor. I'm still keeping an eye on it, but I can't help but feel that they are rushing approval so they can make money with insufficient regard to tolerability. I know someone in the trial who is doing well on it, and I know that many will feel that the risk is worth it, but for me that's when all of the quality of life decisions come into play.
0 -
Hi All,
Started my weekly Taxol with Herceptin and abdominal pains are killing me😢
What is everyone using? They’re not consistently there more like they come and go but they’re very intense.
I can handle the runny tummy but this is painful
0 -
I’m on Herceptin Perjeta and Taxotere for progression. The first treatment I had really bad stomach pains. I was very constipated for the first 3 days. Then diarrhea for the next 3 weeks. Second treatment mo dropped Perjeta. She wants me to get through Taxotere 4 more and then will change to Kadcyla. I’ve been on Herceptin for 2 years. Progression this May. I don’t have a lot to offer as far as information goes but LoriCa I recognize your name and will be seeing you on the Kadcyla site.Reading to see what to expect.
Just hit the wall today. Treatment was Monday. So tired and bone pain back from NEulasta . I just came to bed at 8 pm . Felt very cold thought I was spiking a fever. Must be the weather( I’m 70+)so that’s a possibility too. I’ve been reading your posts to learn more since I only have one Perjeta treatment so far. Just in my bones so I guess I may lucky. Radiation over the summer helped femur and pelvic pain.
People don’t seem to understand that some days I just want to curl up and other days I am really good. You would think after being diagnosed stage 3 in 2005 and Mets 2017 I’d be better at ignoring them . It’s all this thinking Pink making me crazy. Some woman on tv Said let’s celebrate the survivors this month...Really? What about mets people. ? Sorry for the rant. Thanks for being here.
0 -
Faith123: My abdominal pains were primarily caused by gas and/or constipation. "Gas X" helped with the gas pain as well as the explosiveness of explosive "D". "Smooth Move" tea helped with the constipation. When I wasn't sure if I would get constipation or diarrhea, I would take Dulcolax stool softener just in case (cause it would help with potential constipation, but wouldn't cause diarrhea).
Hope this helps.
0 -
Dear Lori, we are really honored to have you here, as I said, you are an inspiration, I say it from the bottom of my heart. I know what you mean regarding DS-8201 but what excites me it is response rates that are very high for this kind of drug (are they real of made up is another quesion). QoL is important, sure. Immuno-therapies, Car-Ts for solid tumors by MIT (did you read mice get cured and get immune to cancer for the rest of their lives?) and other institutes in Europe are also on the way. Do you also follow the Fenbendazole thread - a lot of exciting things happen there? Let's hold on. I believe in us. Wish you al the best with TDM-1. Let's hold on! Saulius
0 -
Maire maybe with the two of us we can get some activity going on the Kadcyla thread. When I read through it I found that there were several early stagers there for some reason, and some people who didn't even seem to have ever been on Kadcyla, and no familiar names, so I haven't posted there yet. Sorry that we both have to be there because of progression, and I'm sorry that you are having a tough time with your current regimen. The load dose of Herceptin and Perjeta can be brutal, and I think that the first dose of a new chemo is always the worst, so all of that is lot to deal with. When the pre-meds from Kadcyla wore off late yesterday I got slammed - intense abdominal pain, chills (no fever), and a wicked migraine-type headache. I was barely functional when I woke up this morning. I'm trying to push through it because I think it's starting to ease up, at least the abdominal pain is mostly gone, it but I think today may end being a nap on the sofa kind of day. Been a while since I've had one of those. I'm telling myself that it's just because it was the first dose, and as my body gets used to it, it will be easier.
Had to laugh because the two-page side effects sheet they gave me at my first infusion listed both constipation and diarrhea as possible side effects. Since I'm an old hand at this, normally I would try to be proactive, but with this one I have to wait and see which direction it goes...or doesn't go hahaha!!
Saulius yes holding on is all we can do. There are several promising treatments being worked on. I just need to find a drug that will keep me stable for a little while, that's the hard part. The fact that I've only had this for two year and that they haven't been able to get me stable for the last 18 months is overwhelming at times, but I'm still holding on.
0
