HERCEPTIN and/or PERJETA Threads
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bstein - I was also NED after 6 rounds of TCHP but pushed to have a lumpectomy and liver RFA just to be as aggressive as possible. When they went in to do both they could not find any cancer anywhere so they called it a "complete pathologic response". My oncologist actually has suggested that I come off of the perjeta and just do herceptin indefinitely because I'm struggling with the side effects. But I will keep the perjeta as long as I can tolerate it.
I talked to my oncologist about the headaches and I'm scheduled for a brain MRI on Tuesday. I also found a lot of people saying herceptin can cause headaches. Here is hoping it's a side effect of the treatment and not brain mets. The brain MRI will give me piece of mind. The herceptin and perjeta can't cross the blood brain barrier so in my mind it's good to have a scan at least once to rule it out or catch it early.
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Best of luck with your MRI Josalive. I'll be sending good thoughts your way on Tuesday. Please let us know how it goes.
Thanks for the good karma Sue. BTW - I had toe and foot cramps for over an hour last night. Was marching through the house trying to keep them at bay because every time I sat down they would start up again. I think it was you who suggested the soap? Well I'm putting that bar in the bed with me tonight! My husband thinks I'm crazy, but something needs to work!
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Hi josalive: I have been NED for over five years with maintenance Herceptin and Tamoxifen (no perjeta). I had liver mets. My children were very young when I was diagnosed and I was very aggressive with therapy as well.
I have had no serious side effects from Herceptin alone, except it tends to cause me bloating for a few days after the infusion. I feel blessed to be doing well, yet persistent headaches or swollen glads remind me of how fragile life can be.
Good luck with the scans.
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Mon123: you give me such hope. Thanks for sharing.
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Thank you everyone for your great input, it helps me prepare for what might be ahead. I got my scan results and after 8 rounds of THP I continue to have NED in my breast but still have a less than 5 mm lesion in my liver (was 1.7) so heading in the right direction. I see my MO on Monday and have breast surgery (bilateral mastectomies with immediate reconstruction on Feb 2) wondering if we will delay that and give more taxotere (hate the thought as I want eyelashes and hair) or just have targeted RFA or something to the liver??I hope my MO helps me make the right decision...will HP take care of the liver met? Breast surgery isn't urgent and can be delayed as there is NED in that area.
My side effect of watery eyes is the worse, false eyelashes just fall off after awhile...hoping this is the taxotere and not Herceptin.
Chewable calcium seems to have helped cramping...bar of soap haha...why not
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Dear bstein, so glad for the good results. You are indeed headed in the right direction and I know that there will be more good news to come. I was struck by your comment about hair, eyelashes and eyebrows - I am so sorry that hair loss is a necessary side effect of this life saving regimen. I have lost all hair twice, and it surely was miserable - I REALLY hated that part of the drill. Hang tough honey, it does come back. Sending good karma, SUE
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Thanks to all you ladies who said you had occasional G&T's or a little wine. I feel so guilty if I have anything with alcohol. Guess I will drop the guilt for an occasional toast or two.
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ok, I have a question. I am on Herceptin and tamoxafen only at the moment. I have had scans every 3 months since last april and every report I get is different. my last scan showed a negative study. NED. this scan says there is a stable 3 mm too small to characterize hypodensity seen on my right heptic lobe. ok, I had liver mets. that thp got rid of. I assume stable means this has been there throughout my scans but is stable. but, it has not been on any of the reports til now. progression? or am I paranoid? I have a dr apt Tuesday. but I hate wondering
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hi Jen -
I was diagnosed with one met to my liver and have been getting regular scans since I finished treatment. During my last scan the doctor mentioned that the 1mm spot on my lung had not changed. That was the first I had ever heard about a spot on my lung and I was shocked! Apparently it had always been there but didn't light up on the PET from my initial diagnosis so they thought it was benign especially since it has never changed size. So it was never mentioned to me until now with a recent CT scan and my liver surgeon who didn't know my history brought it up. I brought it up with my oncologist and she said there are spots like this that can show up in our organs that are likely not cancer. She did not seem concerned at all.
So it may be that the radiologist that did the report does not know your history. Try not to worry about it until you can talk to your oncologist.
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thank you!!Thats what im Hoping to hear. Ill just have to wit til tomorrow.
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Good luck with your MRI today Josalive!
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There certainly is a lot of hope and good health in these pages
Yea! It makes me happy! I've been on H&P only for about 18 months.
Side Effects:
Like Karen was on Taxotere for 6 cycles with H&P early in 2014 and now I've been on H&P for nearly 2 years. Side effects are runny nose; muscle aches and stiffness; muscle cramps in feet, hands, and the muscle between my jawbones; neuropathy in feet and fingers; thin skin and brittle, thin nails; and fatigue. Oh, and sore patches on my scalp. They move around but nearly everyday there's a spot on my scalp that hurts. Some of this could be from Taxotere. I also have a terrible memory now but is that from the drugs or from anxiety and just the daily stress of living with MBC? Who knows.
Pre-meds:
they give me 2 tylenol and 1 zyrtec (allergy med) before each infusion. Those of you taking benydril might want to ask for Zyrtec since it doesn't make you as tired (though I usually dose off during infusions).
Cramps:
I take a low dose (2 or 300mg) of Gabopentin at night which helps with the muscle cramps (my feet cramp when I go to bed and relax) and helps put me to sleep. Otherwise I don't take much of anything though I'm supposed to take daily vitamins and should take calcium or cal/mag. My strategy for the muscle aches is to keep moving which can be terribly tiring! MO today told me to try tums for calcium.
Brain Scans:
The cancer team here suggested a brain scan when they did the other initial scans to discover Mets because of the sneaky qualities of HER2. PET scans showed other areas lit up but they were areas of known active arthritis. Now, in lieu of scans, they will rely on tumor markers and me complaining about something in my head. My MO would rather limit scans but ordered a certain number the first year. Since then I haven't had any. I do get regular heart checkups.
Psychological Aspects:
Shit, it puts a wrench in your life, sends you through a wringer, kicks the crap out of you, makes you shake in your boots, and gives you mixed feeling about everything!
Jos, My cancer center has an on staff psychologist, yours might too. I will say it has been very hard to admit that I'm NED and might stay there for some time. Of course we don't know but those who have HER2+ and an excellent response have a good chance to hum along for, well, some unknown time. Still it's hard to take on the sudden life changes and it's hard to go from thinking you're about to die which is the first thought at diagnoses to thinking that you may just live. While you get a new life with maddening life changes still, the infusions and SEs are better for now than the alternative. I thought I'd be back to a sense of happiness after a year of good results with treatment and now 2 years out I am actually getting a sense of ease. During summer I was feeling like I should be happy and relieved but instead was feeling depressed and worried and waiting for bad news--all while telling myself I should be elated. Well, it's a drag and a drain to be here, but I am finally feeling like I can take each day as it comes with more of a sense of ease and stop needlessly perseverating about, oh so many things.
Is anyone else trying to do more bucket list things, especially things you can only do while feeling good?
Michele
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Hello all and thank you so much for the supportive words. I have been in such a funk this last month since these headaches started and had convinced myself that the cancer had progressed to my brain. I had a brain MRI in the morning today and my onc called this afternoon to let me know it was clear. I immediately started crying out of relief. We still need to figure out why I'm having such bad headaches but at least we can eliminate brain mets for now.
Thank you all for being so supportive. These emotional highs and lows are tough and it's so comforting to have people who understand to talk with.
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Josalive: what an incredible relief! Hope you wake up today with some of that weight lifted.
Sharing some good news:My tumor markers after 6 Taxotere (and HP) were 39 and 41. I am 8 weeks post final tax and 30 days on Tamoxifen and my markers are 19 and 22! I've been agonizing over every ache thinking it could be progression. Hoping maybe now I can relax a little--at least until next week's echo.
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Clear MRIs and falling tumor markers, What great news to wake up to! Congrats Josalive and Bluefrog!
Josalive- I'm curious if your headaches change throughout your treatment cycle? If they are worse after treatment that might indicate it is treatment related.0 -
Congrats, Josalive and Bluefrog! Good news, indeed.
FYI - My onc has ordered tumor markers for me during the last two treatment rounds, and *the lab did not do them.* They had a change in paperwork processes, it appears, and a smart nurse told me what to do next time to make sure the order gets processed. I have had - tumormarkerxiety? - for the past 2 months!
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Oncologists said all scans were good she said that spot has been there and is stable. Scans again in 3 months so i can relax until then. Thanks!
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Jen: what a relief! Great news.
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My migraines returned on treatments after a 20 year break. Also, are you taking any Zofran for nausea by chance? It is know for causing headaches in some women.
Great that your brain was clear
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Awesome news Jen, Bluefrog and Josalive!
Shutterbug - GYN onc today? Hope you leave your appointment with all questions answered.
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Ovarian cyst update! It is still there and apparently it hurts when poked (ow!). I have much more confidence in this gyn, but she wants me to wait until after my next CT Scans (which should be in February) and to do another pelvic ultrasound (UGH) before we plan surgery. She thinks they can still do it laparoscopically though, so that is good news.
She kept saying that there isn't any hurry. She feels it is unlikely to be ovarian cancer, and says "you already know it could be breast cancer because it has already spread". I tried explaining that yes, while that is true, if this is breast cancer it means the drugs I'm on are no longer working so I'd really like to know definitively one way or the other. She kept saying that if it is breast cancer the drugs I'm on will shrink it and I kept telling her that it didn't seem to be there when I started these drugs. Sometimes it felt like we were going in circles.
She also said she wants me off my treatment for 30 days before surgery (which I suppose would mean missing only 1 treatment). I explained that it wasn't chemo and that my blood counts are fine (or at least close to fine) but she said she was still worried about a risk of infection. I'm just going to have my regular onc call her and talk that out.
Has anyone else had surgery while on H&P? Did you have to stop or delay treatment?
Thank you all for keeping me in your thoughts. I'm always delighted to come here and read good news from everyone!
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Shutter dear, I think yours counts as good news, although the discussion with your new GYN did sound sorta circular in nature. I am so glad that you were able to have a real conversation together - a good sign. And jolly good for you for keeping the questions coming and gently pressing for some answers.
I really think it is unlikely that a doctor herself would commit to "unlikely to be cancer" unless that were so. I would hang on to that.
I have no experience of a surgery while on H&P (except for port replacement). Very smart of you to get your oncologist in the conversations. Feels like you have a lot of brain power (including yours!) working on the issue.
So great job, Shutter, I'll bet all will be well. (I guess I can stop compulsively checking for you now). Keep on dancing, hon. Fondly, SUE
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So - I belong to The Closed Metastatic (Advanced) Breast Cancer Support Group on Facebook. Anyone here can join but you have to wait for the moderator to approve you: https://www.facebook.com/groups/368005576558494/. There is a fascinating thread today where about a half-dozen women, most of them HER2+++ it looks like, talk about stopping H&P and adopting a "watch and wait" strategy with their oncs. Some of them have been off treatment for months. At least two had brain mets at some point.
Has anyone else talked about stopping H&P for a while with their oncs? My understanding is that these women were NED or stable for a while first.
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I stopped a year ago. I will be Ned for 5 years on feb 25. I had just 2 liver mets.
I am ER-, so on no treatment.0 -
Aw, thanks Sue. I didn't realize you were obsessively checking on me! You ladies warm my heart. I do feel better, although I don't think I'll truly rest until this thing is out. I feel like it needs a name. Bert maybe?
Hey Scrunch -- I'm in that group! How did I miss that discussion? I'll have to go back and look for it. Thanks for the heads up!
Always encouraging to hear from you Lauriesh!
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Shutterbug-I had a mastectomy while continuing on H&P, so I think it's fine to stay on it during surgery. Hopefully your oncologist can reassure the surgeon.
Scrunch-My onc and I have discussed stopping treatment in an abstract kind of way. I'll be 2 years NED in May. There is no data except that when they compare women who had no interruptions in HER2 blocker vs those that had time off due to heart issues etc, the ones who stayed on consistently had a better overall survival. But there's probably a subset of patients that were oligometastatic to begin with or excellent responders that probably could go off, but no way to know for sure who those people are. Neither of us are ready to take that risk right now. I do think that if I get to 2020 still NED, I would stop. My youngest graduates high school that year, so once I hit that milestone I would be tempted.
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Shutterbug -
I also had a large ovarian cyst (9cm I think) when I was first diagnosed with breast cancer. It showed up on the CT scan along with the liver spot and my first onc was concerned. They then ordered a PET scan and confirmed it was benign but unfortunately the liver spot lit up. Have you had a PET scan lately or are you planning to? Maybe that could give you some insight but I know insurance doesn't like to pay for them.
When I did chemo the cyst disappeared (I think because I went into temporary menopause) and my estrogen levels are just now returning and I hope the cysts do not return. Are you on hormone suppressing treatment? Did the gyn onc say anything about how the cyst is growing? I don't really understand it all but it wouldn't seem like cysts would grow if estrogen is being suppressed but I'm not totally sure. I hope you figure it out soon and get some peace of mind and physical relief
I also did my lumpectomy surgery as well as my liver RFA surgery without coming off of H&P so hopefully you won't have to skip a round. Good luck!
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Shutter - one more question is why can't they biopsy the cyst? It seems like it would be able to be reached pretty easily? Anyway... Maybe another question to ask about. It gets so frustrating having to push doctors toward good treatment decisions. They should be the ones talking us through all the options but it seems like it rarely happens. But that's why it's so nice that we have each other to help think through it all. Best of luck!
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Hi All,
MicheTheVanquisher, Delighted you now are feeling comfortable enough to say that all things are ticking along nicely. Good Woman!!..... always nice to hear some positive feedback from those who are a few years down the road. Car2tenn Nothing wrong with a GnT I always enjoy a good vino served in a nice crystal glass!! everything in moderation of course!! Jen76 hope all went well with your scan and you too Shutterbug. I am being scanned either Monday 1st Feb or Monday 22nd Feb not sure which date, but am feeling well so please God all will be good. Kind Regards to you all.
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Hi Josalive - I have never had a PET, only CTs. No mention of any cysts was made on any scans prior to the one I had in November, so I believe mine developed while on H&P. I am also on tamoxifen. I have lots of smaller cysts on both sides which they say are benign, but the large one is concerning because the ultrasound shows it has a "solid component". The radiologist did not call it a cyst, they used the word "neoplasm" which could be cancerous or benign. It is encouraging that you did not need to be off of treatment for your surgeries. No one has mentioned a biopsy but it it drags on any longer I may bring it up.0
