HERCEPTIN and/or PERJETA Threads
Comments
-
Fraidycat, I'm so sorry. This stuff sucks
0 -
Sorry to hear that Fraidycat, hope your biopsy goes well. I agree about doctors denying SEs, I think it's one of the most frustrating things we have to deal with it. We waste a lot of emotional energy trying to get SEs acknowledged. When I was having that problem with taxol I was so frustrated that I broke down one day and yelled at my MO that I didn't think he was taking me seriously about how bad it was, that I was not exaggerating. I chart my concerning symptoms to look for patterns with my treatment cycle, so when I say something is due to treatment I'm almost 100% positive it is due to treatment.
0 -
Fraidycat, so sorry about the growth.
gonegirl: I get the occasional, random episode of diarrhea/loose stool. I attribute it to the Perjeta. But I can't figure out a pattern to it. Tends to be one-offs. Has gotten better the longer I have been on the infusions.
I had SO much stiffness and achy-ness on the Herceptin before with my original treatment. But it is not as bad this time. Not sure why but very glad!!
Here's a random one: the last two infusions, I have had just a little shortness of breath starting a few hours after the infusion. Kind of like asthma. Had it @ 3 days the first time and only about 36 hours the second time (this week). I do not have a "real" Hx of asthma, although I have had some similar symptoms with bad respiratory infections. MO says she has not run across this as an SE before. Really hoping it is not an allergy. Anyone else had this? Thanks much.
0 -
Lumpie when was the last time you had a MUGA or echo? Heart problems can cause shortness of breath. Seems most people are told to get a MUGA or echo done every 3 months when on Herceptin. My cardiologist said he only needed to see me every 6 months because my heart was in great shape, but if I start having problems with shortness of breath before I'm due for the next, he's the first one I'd call. Scares me to be on a cardiotoxic drug.
0 -
Lumpie, have they slowed down the infusion and given you pre-meds. That does sound scary
0 -
Hi
I have just had a 2nd CT scan showing NEAD. Feeling hugely lucky that the HP protocol is working and that I tolerate it well on the whole.,
Next April I will be 2 years on from my stage 4 dx and will scan again as I am now on six monthly scans.
My doc hopes I will do well for a while yet before tx is changed. The medianPFS is 24 months of course.
Again, so very relieved to be able to report this.
Liz
0 -
Liz. That is wonderful to hear.
Susan
0 -
Great news Liz!
0 -
Hi all! I just hit my six year Stage IV anniversary and am still NED on Herceptin. As I mentioned on another thread, I ended up having a PET scan because the radiologist that read my CT scan thought he saw something that was an issue in my abdomen (periotinisis, or actually - progression) so my oncologist suggested a PET, even though she didn't agree with his findings, and I didn't have any symptoms (bloating, pain in stomach, etc.) So I had a PET last Tuesday and went to see my oncologist a few hours later. She read the PET scan, and told me she was almost positive I had progression to my lungs and that I needed to switch therapies. Showed me the scan and the areas that were lighting up and that she thought were cancer. Spent at least 45 minutes talking about what Plan B would look like. So for about 3 hours I was totally freaking out. I had to go to work and was trying very hard to hold it together and not totally burst into tears. I was in a meeting in the afternoon - she called in the middle of it and I couldn't answer (actually didnt' realize it was her) and then she texted me saying to CALLHER RIGHT AWAY... and of course then I got right up and left that meeting thinking she had more bad news, but in fact she was calling to tell me that she had misread the PET, and that I was totally NED and fine. She said she'd talked to the radiologist for a long time and he explained what she was seeing (which wasn't cancer) and so anyway..... that's my story. I was very relieved, but also totally emotionally drained...….
Really hoping to be on Herceptin for six MORE years, but I guess time will tell, and it's nice to know that there is a plan B, and then a Plan C, for all of us!
Great news for you too, Liz!
I definitely get SE's too - sometimes worse than others - no pattern for me. I don't know if sometimes I am just more run down and so things hit me harder?
XO
Andrea
0 -
Andrea that is fantastic news and I hope you get at least six more years! I'm hoping to be one of the lucky ones who gets many years on Herceptin, those of you who have been on it long term are inspiring. My oncology nurse and I were talking this morning about how blessed I am to be in the 20% who is HER2+ and can benefit from Herceptin. She calls it a miracle drug.
Yes I have noticed that the more run down and tired I am, the harder the SEs hit me.
0 -
Andrea, that is great news that you are at six years and still NED! I'm so sorry you had that roller-coaster of a day, though! I can relate as I had one CT scan that said it showed progression, but after my doctor met with another radiologist, they both agreed there was none. A lot depends no who reads the scans.
I'm at 2.75 years since diagnosis and still going strong on just H&P and Xgeva every three months. I also get the random loose stools, random leg, foot, and intercostal rib spasms, and drippy nose here and there. Sometimes it is worse than others, but I find if I stay active, I have less issue with everything. Oh, and the random itchy neck and forearms from Perjeta are also no fun.
I was curious how long some of you have been on Perjeta. It's interesting to see how many are just on Herceptin after getting both. I'm OK with the side effects now, but if the itchiness gets worse, I don't know that I will want to continue. But, I hesitate to give up anything that is keeping me stable.
Lumpie - I also get random shortness of breath. It seems like it happens the first time I try to do something strenuous after treatment, like climb a hill. It seems like my energy is just gone. But then the next day I will be fine and my energy is way up again. It's almost like it needs to physically work out of my system a bit, and once I do, I have good energy again. I guess it's just another good reason for me to get out moving as soon as possible after my treatment days.
-DeAnn
0 -
DeAnn - I wasn't even on Perjeta a year. Maybe I have already talked about this (one thing I am definitely losing is my memory). My oncologist felt like it was causing more of my side effects than the Herceptin, including my neuropathy, so she suggested I drop it. It definitely helped.
I went to get an infusion on Tuesday night. Because of all of the confusion with my PET scan and the intent to switch my treatment, AND because I hadn't been to get an infusion since August, I somehow ended up with a "loading dose" of Herceptin as opposed to my normal dose. I heard the nurse say whatever the dose was "over 90 minutes" and I let her know that I usually only got my dose over 30 minutes.... and then she told me it was a loading dose and I don't know why, but I sort of lost it. I'd literally not had a loading dose since my very first one, and it really didn't make any difference besides the fact that I'd been planning to be in and out quickly and not sit there for 90 minutes, but I think after the PET scan stress I was still emotional and I seriously freaked out. Those poor nurses. My option was to get it, or to come back another day, so I got it. Anyway, not sure if that contributed but I was totally sick yesterday - headache ALL day, sick to my stomach, flu-ish, hot, cold, etc. Ugh.
Hope everyone has a good weekend!
Andrea
0 -
That load dose is brutal Andrea, sorry you had to go through it again. According to Genentech, any time you miss an infusion by more than one week you are supposed to start with a load dose again, which really sucks. I think it's because the half-life is around 21-28 days, so once you go more than a month between infusions you have to start all over again in order to maintain the proper level.
DeAnn - yes the itching!! Mine is on my upper arms and especially the inside of my elbows, drives me nuts.
My MO put me on a muscle relaxer last week to see if it would help with the muscle cramps and spasms because they were getting out of hand. I don't think it's helping much, last night the pain of a cramp in my foot and along my achilles tendon woke me up at 2am and it took a half hour of massaging before it would release. I had my Qigong class earlier that evening and I had cramps and spasms the entire time. One of the warmups we do every week is achilles tendon stretches, so I'm wondering if physical activity might actually be making it worse because it's usually my tibialis anterior (along my shin bone) that is always cramping. It seems like I'm the opposite of DeAnn - the more active I am, the worse the cramps and spasms have been getting. Just wish I knew what was causing it because I'm getting very frustrated and cranky and have tried everything we can think of. Still not going to let it slow me down though.
Hope everyone has a great weekend!
Lori
0 -
Lori - One of the things I've found a little bit helpful with the cramping is to drink some water with apple cider vinegar before bed. Then I also am using some CBD oil salve on my feet and calves and I also use it for the itchiness on my neck. Seems to help both situations a bit. The other weird thing that actually seems to help with cramping is putting scented soap by my bedside. When the cramp strikes at night, I smell the soap, and it kind of short circuits the cramp. Strange, I know, but has helped many times to calm the cramp.
I actually had a massage yesterday and as soon as he started down by my legs and feet, the arches of my feet started to cramp like crazy. But, last night I didn't have any foot cramping afterwards, so maybe it helped overall. I do find that the shoes I wear each day make a difference in how much I'm cramping as well. Certain shoes are worse than others.
Andrea, so sorry you had to deal with the loading dose of Herceptin. I've had to do the loading dose three times in my life, and once it made me have a really bad reaction. Almost like my throat was closing up and then I threw up. I'm glad to know, though, that the Herceptin alone has been sufficient to keep you NED for so long. That makes me feel better should the side effects ever get to a point that I can't tolerate them.
Hope everyone has a good weekend. We are finally getting some sunshine here in Minnesota after 10 days of gray!
DeAnn
0 -
I don't think I could go through another loading dose. I'm so sorry, Andrea.
I'm still adjusting to the Herceptin/Perjeta. I didn't have a problem with just Herceptin. Wish that had lasted. The Perjeta is messing with my digestive system. Not diarrhea but just discomfort and more time in the bathroom. Plus, I've gained weight. Not sure if that's related. I've dealt with IBS for a long time and wondering if I need to cut out all heavy foods. With IBS I need to avoid high fat foods and Perjeta seems to have made my system even more sensitive. So oatmeal over scrambled eggs. ☹️. I go to breakfast once a week with friends on Saturdays so guess I need to stick with just an English muffin tomorrow. Bummer. But this is so uncomfortable. I just switched to this. I pray it's working. Would make dealing with this more comfortable.
Met with a new counselor today and just broke down in tears right away. This has been a difficult time with the reactions to the Kadcyla, switch to new treatment, and switch to new oncologist. The place I was going to had no nurse practitioners and that meant everyone was overworked so when the reactions started, I couldn't get people to respond. I miss them all though, the doctors and the infusion nurses. Sucks. Just feeling overwhelmed.
0 -
Hi gonegirl, I'm so sorry for the hard time you are going through. I so often wish there were better words or expressions in the English language than 'Im so sorry', but I really am, as this journey is something all of us in this group are familiar with, and we don't want it for each other.
I was diagnosed with a liver met last year February right out of the gate, her2 and estrogen positive, and so far herceptin and aromasin have been able to keep the cancer inactive. I am very grateful for each day, but the loss of carefree-ness regarding the future is something I mourn I suppose. I have three boys, ages 16, 14 and 9, so like all of you I really want to be around for as long as possible.
Anyways, just wanted to introduce myself, and say I really admire you all for your courage...May God, who is good in spite of what we feel and see, provide a way for us to be cured soon. He made us and everything around us, so the answer must be there somewhere xxx
0 -
Susan I'm so sorry to hear you are going through a rough time. This disease is such an emotional roller coaster. I've gained weight on H&P too, about 12 pounds in the last six months, despite increasing my activity level (walking, strength training, Qigong, and until this month swimming). I don't have the IBS to complicate my diet but for now I've gone to a strict low carb diet to try to drop the pounds (or at least stop gaining) and it seems to be helping. I lost 2.5 pounds so far haha, but that's better than gaining another 2 pounds! It took my body about four months to adjust to the H&P without feeling like I was hit by a truck, so hopefully yours will settle down soon and you have good response to the H&P to help you feel better emotionally.
DeAnn - apple cider vinegar for the potassium and calcium, soap for the magnesium - the very first thing we tried was electrolyte supplements. Potassium didn't help, then we added magnesium and it still didn't help (btw my MO warned me that magnesium supplements would add to the D problem of perjeta). My oncology nurse suggested quinine water (tonic with quinine), so I tried that for a few weeks even though I hate to drink soda because of the high sugar levels. My calcium levels are elevated so I don't take a calcium supplement (but I do eat a high-calcium diet). It became clear that it's not due to an electrolyte problem or dehydration. I think it's neuropathic, possibly nerve damage from spinal compression (I've apparently lost 1.5 inches in height so far!!).
Daywalker, I can only imagine how hard it is for you with children those ages. I have to keep reminding myself to stay focused on the moment and live each day to the fullest, but it's not always so easy to do.
Hope everyone is having a great weekend! It's raining here but that's a good thing. It's been almost a year since we've seen a drop of rain and the wildfires have been devastating all summer.October is the official start to our wildfire season, so hopefully this rain will give the firefighters a break, but not too much that it causes mudslides in the burn scar areas.
Lori
0 -
Lori: I hope you all do get a break on the fires. Those have been horrible.
Daywalker, this is a rollercoaster ride, for sure, and I appreciate everyone's support on this. My husband and I are doing a 4 day weekend next weekend that we're looking forward to. Those breaks mean a lot, a get away on many levels.
I'm figuring out the gastrointestinal stuff. I just need to eat lighter, less fatty meals. So a farmer's diet is not for me. Saturday I ate much lighter (oatmeal for breakfast, an egg and english muffin for lunch, and a ceasar salad with chicken for dinner). Went much better. The GI stuff messes me up so easily, so I have to do a keep it simple food plan. Better than a "spending time in discomfort or in the bathroom" meal plan.
Susan
0 -
Yay Liz and Andi! (Just getting caught up after a long hiatus from the board).
Big D question here...I’ve had 0 tummy troubles on H&P since I dropped T&C from the equation over a year ago. All of a sudden, two weeks after my last infusion, I’m having daily diarrhea. Anyone here experience this sudden onset after over a year of no issues? Wondering if it’s a bug I caught from my 3yo, or related to H&P and something I should mention to my MO and start taking loperamide again. Ugh! Minor inconvenience, but still, not fun.
Sending positive thoughts to all of you!
Xo,
Erin
0 -
Hello everyone..… MommyErin, I get side effects from my treatments very randomly. Sometimes I will have a treatment and literally feel fine the next day and for weeks afterwards, and other times I feel like I have been hit by a freight train. I think we were just discussing that on this thread a few weeks ago. Wondering if it has to do with overall health when I get the treatment? I do notice that sometimes my white blood cell count is lower than other times....I don't know. I DO know that I was TOTALLY sick after this last mistaken loading dose. Not fun. Flu like symptoms, big D, short of breath. I am okay now but it was not a fun few days. Oh, and cramps! I need to remember the apple cider vinegar because I have heard that it's good for a lot of things.
Welcome to DayWalker. So sorry that you are on this journey but as you may have already learned, the women (and men) on this board provide more support, kindness, knowledge, advice, love and friendship than you will find anywhere in the cancer world. I have boys as well, and mine were about your boys age when I was diagnosed. At the time, my goal was to make it to see my youngest one graduate from high school.... which I did, and now I want to see him graduate from college!
Hope everyone else is having a good week. It snowed here in Colorado over the weekend! I am not ready for winter!
XO
Andrea
0 -
Thanks, Andrea. The loading dose mistake sounds miserable! So sorry you had to go through that. Whatever the issue was has resolved itself. Sitting in the infusion chair now, so hopefully it was a bug and I won’t get it this round. HP SEs have been non-existent so far (knock-on-wood). Letrozole is another story
0 -
Hi all,
I may have posted here before when more newly diagnosed, but it’s been a while. I’ve been on H&P only since January. I have side effects of unpredictable and intermittent diarrhea, some joint pain, and most recently maybe nausea? Anyway, while I wish the side effects were more predictable, it seems like it is normal for them to be unpredictable, so at least I’m not alone. As Andrea and Lori said above, the SEs do seem a little less if I am more rested and hydrated. Unfortunately I’ve got treatment in a bit today and I’m tired and dehydrated, so that doesn’t bode well.
0 -
Henrietta dehydration can cause the nausea (H&P shouldn't be causing it). I try to make sure I stay well hydrated always, I'm constantly drinking fluids and never leave the house without my water bottle. I may not be able to control my fatigue level, but unless diarrhea or vomiting is severe and lasts for several days, we should be able to maintain hydration levels and replace electrolytes as needed.
Was hoping to be one of the fortunate people who got many years out of H&P, but looks like my run may have only lasted 8 months. Lymph nodes incredibly swollen and painful and MO is very concerned. He's giving it a week to resolve on the off chance it might be an infection, but I haven't been feeling as well as I was a couple months ago so I've suspected. If it doesn't resolve in a week I'm off for a new scan, possible biopsy, and then figure out what's next.
0 -
Hi Henrietta. Perjeta consistently caused so much join pain for me that I dropped it, and have been on Herceptin only for almost 6 years. That loading dose I had a few weeks ago is still affecting me.... neuropathy is worse, not as much energy...I even think it's affected my mood. (or maybe I am just still mad that it happened!) I also try to stay hydrated and rested. I have actually rescheduled infusions in the past when I have been feeling really bad or suspected that I had something. However, there have been times when I thought I was 100% ready to go, and it still hit me like a freight train.
LoriCA, so sorry to hear you aren't feeling well. Maybe it is a little infection or something else! I'll think very positively for you. Please keep us posted this week!
XO
Andrea
0 -
Best wishes to you, Lori. I also hope you turn out to have an infection.
Thanks for the tips on SEs. I’m trying hard to stay hydrated but struggling with it lately. I’m having such bad abdominal pain from this round. Apparently this is not super uncommon, but that doesn’t make it fun. I may call my MO because it is keeping me from sleeping now.
0 -
Hello!
I was wondering if anyone had has Herceptin stopped and restarted? my mother has to take a break because her heart function wnet below 52
If so:
- How long was it for
- Did you have progression during this time?
- Did you go back on herceptin?
Appreciate any experiences!
0 -
When my brain met was found, I was off Herceptin and Perjeta for almost 3 months while having brain surgery, WBR etc. I did not have progression from the neck down. I am still NED from the neck down. I went back to Herceptin and added Perjeta that November.
0 -
Hi everyone! Since we all are getting Echo’s here, I wanted to see what everyone’s have been and if along the way you’ve had significant changes in them. Mine started out a little more than a year ago at 65% and stayed consistent at 61% until my latest Echo which my EF dropped to 51%. Haven’t seen my MO yet to see what she thinks. Should this concern me? What do y’all think?
Hope you’re enjoying your weekend!
Jenny
0 -
alwaysbepositive, I think 50 is still a normal EF so I don’t know that your MO will be worried. I’ve also learned there’s a pretty big range around the EF measurements which is why they’re often reported like 55-60.
0 -
I have a cardiologist and he says he won't worry unless my EFR goes to 40. Mine is typically 50 to 55. There are drugs they can give to help with this kind of a drop. Recently I was off everything for about 5 months since my platelets were not recovering. Kadcyla is a mixture of heavy chemo and Herceptin so it hits the bone marrow. In 5 months my platelets have only gone back up to 84. This will take a while.
Btw, someone earlier said nausea was not a side effect of Perjeta. I found a journal article that said it was. Lots of GI fun with one.
Hope all are well.
Susan
0
