HERCEPTIN and/or PERJETA Threads
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ok so my bumps are different than a rash...hmm never had them before all this bc crap but oh well.
My oncologist thinks that none of my symptoms are side effects from treatment. Big eye roll here. He says “well that’s not in the literature as a common side effect. Really you should feel just fine.” I want to jab him with a needle and let him see what 100+treatments feel about like...the. He can talk to me. My fatigue was debilitating. I finally got on Ritalin. That might be helpful for some of you here. Again, my oncologist didn’t want to prescribe it because “it’s it a drug typically used in cancer treatment.” He seriously is a super smart guy, but he is lacking in some areas...
Being a shell of my former self has been the hardest part. It’s a grieving process I guess
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LoriCA: Thanks for your reply. Sorry we are dealing with this but good to know we are not alone. OMG, I get the "stop and drop" tiredness also! I just took a look at the Official Herceptin and Perjeta sites. Both list "feeling tired" as a side effect. (I had looked before but.... with time.... I forget...) I really don't think this is much due to your relaxed schedule. I am very active but that in no way makes it better! (And my personal pet peeve is then people tell me I will feel better if I get more exercise! I wish it were that simple!)
FYI re Tx: This is my second go-round with Herceptin, my first with Perjeta. I started 9 months ago on the combination (plus taxotere for 6 cycles). I had a year of Herceptin (+6 cycles of T+C) about a year+ earlier.
Symptom share: Besides the fatigue, with the first go-round, I had terrible aches and pains that that were so bad they impeded my mobility. I could barely get up and down the stairs - as very active person in my 40's! And I got "frozen shoulder" syndrome. That got better during the brief interlude between treatments....thank goodness... because it was really horrible. After several months on the combo this time, I have much less of that stuff but I am starting to develop hip joint pain. I really hope it does not get any worse. The stiffness and body/joint pain is not a SE acknowledged by the drug manufacturer but I have heard/read others report this SE. I reported mine via the FDA website. If others are having symptoms that are not yet acknowledged by the manufacturer, you can self-report to the FDA. This helps with identifying SE's. (Most docs do not report novel, non-life-threatening SE's no matter how much you complain. They are too busy.) Here's the link: https://www.fda.gov/Safety/MedWatch/
LoriCA - hope ur SE's get better!
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Oh Lorica, you are the first person who describes perfectly what happens to me. Sometimes it’s in the morning, again always once or times in the afternoon and usually before bed. It has happened at the mall and I’ve made to the car most times. Afterwards I have a flash and then feel fine. It’s embarassing and makes me think I’m just lazy or giving in. Even though intellectually I know better. I’m only on Herceptin not Pejeta. They added Tykerb and laetrozole to that. Doctor says it’s just my body telling me to take it easy🤔
Wishing you the best, Maire
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I'm glad I'm not the only one who gets hit with the sudden Stop You In Your Tracks fatigue!
Lumpie I had previously been very physically active, but got knocked off my feet for 6 months and started working on rebuilding my stamina a couple months ago. I'm stubborn and sometimes push myself too hard instead of recognizing that my body really does need to rest. I can and do walk for several miles without a problem but I really pay for it the next day when I do more than a mile early in my treatment cycle. Stairs give me trouble, in my legs, not my lungs/heart. When I go up and down the stairs at home multiple times, after a few trips I find that I have to pause halfway up because it hurts so much. But the joint pain is absolute horrible at night, so much that I haven't had a good night's sleep in two months because I can't get comfortable. My hips, knees, and believe it or not every single bone in my feet scream all night long and when I do manage to finally fall asleep in the wee hours, I wake up every half hour or so. Have tried everything for pain relief (including opioids until recently) and to help sleep (melatonin, MMJ, lavender EO) but nothing has helped so far. I'd kill for a couple of back to back nights of decent sleep but don't want a prescription sleep med because I don't want to wake up in a fog. I finally got rid of the effects of chemo brain and opioid fog and am enjoying having a completely clear head right now.
Kjones13 no matter what our doctors say I'm sure my fatigue is related to the H&P because it's worst the first week of my treatment cycle, and by the end of week 3 I feel almost normal (as in, I can stay awake and on my feet all day and actually get things done without needing a nap haha!). I keep a record of my symptoms and side effects to make it easier to determine what is a SE of treatment and what might be something of greater concern. Kind of a bummer every time I realize that just when I start feeling like myself again, I have to go for another infusion in a couple days. I completely relate to that grieving process, I get so frustrated that I can't be the person I used to be. My livelihood/business depended on me being physically active in extreme terrain, so I've really lost myself in this process. Feel like I need to completely reinvent myself somehow instead of giving it all up, but then I start wondering if it's even worth the effort.
Maire67 - my husband says the same thing, that it's my body telling me it needs to rest and I need to listen to it. Our bodies need rest to heal, and when they are in constant battle mode they need extra rest and we should never feel guilty about that.
Liz - hope you are continuing to feel better and making progress with your ears.
Despite that list of complaints hehe, this round really has been a bit easier on me than my previous rounds, or I'm getting better at managing the cycle. Not really complaining as these SEs are much easier to deal with than those of some other treatments.
Lori
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Had a breast MRI because the skin over my original tumor site was inflamed, cracking/peeling and painful. After two months of it getting worse I got in panic mode given how my original DX went down and was afraid the H&P wasn't doing any good. They believe that the MRI shows that it is actually due to the healing process, especially in the nerves and lymph nodes. There are other signs of continued healing, so we're going to stay the course for now. This round of H&P again was much easier on me than the first few, so I think I'm settling into it. Probably also helps that I am now completely off the morphine and fentanyl and no longer have any withdrawal symptoms.
Hope everyone else is doing well!
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catching up here. No fatigue for me, I’m super lucky that way, I did my first 5k during chemo. I will add though that H&P really dries my skin out and dry climates are a huge challenge, no matter how much water I drink.
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Good on you for doing that 5K illimae, that's fantastic! I think my body has adjusted to the H&P (or I finally got all of the chemo out of my body) because the last few rounds of H&P haven't been bad at all, no more feeling like I've been hit by a truck the first week. I'm actually feeling pretty good lately, the fatigue only hits when I push myself too hard.
I highly recommend Cerave products for skin care. A friend recommended them when chemo trashed my skin. My face was so dry I couldn't even wear makeup because it would just turn to mud and nothing else was helping. Cerave has my skin in the best shape it's been since I was in my 20s, soft and smooth, and I live in an extremely dry climate. Works better than any pricey skin care product I've ever used, and it's cheap - found at places like Walmart and Target. Cheap enough to give it a try without feeling like you've wasted money if it doesn't help.
Liz I hope your SEs have settled down and your last infusion has been easier on you.
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Hi all, I've been reading several threads but this is my first time posting. I was diagnosed stage IV in April and I am still in shock and dealing with the emotional and physical se's of treatment. Halfway through 6 rounds of taxetere and Im planning to ask MO if this 4 round next week could be my last of taxotere. Have any of you stopped at 4 or does everyone do 6? The neuropathy gets a little worse each time, although it's not bad yet I just don't want it to get worse.The stage IV diagnosis came after a month of nausea, vomiting and fullness. I thought I had an ulcer, the last thing I thought was Mets. Had EUS with biopsy found ILC near pancreas, duodenum and bile duct. Surgery, and another procedure to open duct with stent and reroute my intestines. Biopsy confirmed BC but this time it is HER2 POSITIVE. My MO says it can morph like that, I was still taking femara! I am encouraged by the positive results I've read from those of you who have been on herceptin for a long time. Thanks for all the good information
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kdgirl, neuropathy became an issue during chemo for me too, at which point my MO reduced the dosage by 20% and it helped a lot. The reduction allowed me to continue treatment to complete (on abraxane, a taxotere cousin drug). I would recommend trying that first, your doc should agree. Good luck 🙂
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Sorry to hear about your Stage IV diagnosis Kdgirl. You've been through a lot already and I'm sure it's taking a toll on you.
I had to stop taxol (another taxane) after #5. I was supposed to do 12 weekly and then 2 monthly doses, but after #9 weekly I started experiencing uncontrollable explosive diarrhea that got worse with each infusion. When I had the first monthly dose it damn near killed me - every 20 minutes for 8 days straight (then it only slowed down for another two weeks) and I couldn't even take a sip of water, let alone eat anything. I had a scan done that showed a very good response so we agreed to skip the last dose. Illimae gives good advice, better to try a reduced dose than to stop it altogether if you can avoid it.
Funny thing about neuropathy - I didn't think I had any problem with it all, and then 4 months after I finished chemo I started having a problem with neuropathy in my feet. Since H&P doesn't cause it I can only think that the opioids I was on back then had masked the problem. After I got all of the opioids out of my system the neuropathy continued to get worse, my feet felt like they were on fire. I just had to increase my dose of gabapentin so I could get some sleep, but at least it's not bad enough to cause any problems with walking, etc.
Liz you haven't checked in for a while, hope you are doing okay and that your SEs have settled down.
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Hi all
Lori- I am late replying but my HP side effects are back to being the crushing, predictable fatigue on the evening after treatment and up to at least midday on the following day.
I use Aveeno as a body moisturiser. I don’t suffer too badly with skin related issues.
Kathy- I am very sorry to read your story. Hopefully the wonderful people on this thread will be able to give you support.
So here is my experience. Like you I was dx originally in 2011 and then stage 4 in March 2017. I developed arm pain that I originally put down to Lymphedema. In fact I had a single IDC tumour in my mediastinum which had resulted in a blood clot. My internal jugular vein was being compressed, hence the arm pain. The shock and distress was utterly terrible and so I can relate to your story and your dx only a few months ago. It definitely does get easier, but that sense of shock at the time is very real and hard to shirk.
My treatment plan was Taxotere, Herceptin and Perjeta ) 6 cycles) with on going HP thereafter. I managed just 4 Taxotere because of neuropathy. I’m now NED. This is a good protocol. Feel free to ask all the questions you want.
All the best Liz x
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I'm really sorry to hear that Liz. The SEs from H&P seem a bit unpredictable from infusion to infusion, at least for me. Still hoping your body is just adjusting after the break and that it gets easier for you again.
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thanks Lori. How are you coping with the anxiety these days?
L
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Liz my MO thinks the problems I am having - the skin changes and pain over the original tumor site, as well as the new rib pain, are actually due to healing and a sign that I am responding to the H&P. I had a breast MRI last month since the symptoms were similar to my initial IBC DX (it started as a "rash" before there was any inflammation) to put my fears to rest. It sucks that healing can cause so much pain too, but the cancer did a lot of damage in a short time and I still have healing to do. I just keep reminding myself that healing pain is good pain, and truthfully I still feel so much better overall than I did just six months ago.. Looking forward to taking a well-earned and long overdue vacation later this month, camping and hiking. Nature is very healing for me.
Lori
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Illmae, I will ask about reducing the dose, thanks!
Lori, I had neuropathy in my feet for a year+ in 2012 when I had TAC. So I’m nervous about getting it again!
Liz, it’s good to hear that the protocol worked well and got you to NED.
How long has everyone been getting the Herceptin+Perjeta infusion?
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My first H&P without chemo was 30 mins but I had it changed to 60 due to hives and flushed face. All went well for several months but some skin issues have returned, it can be annoying but I deal with it, things could always be worse.
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I have had HP alone now for a year. I have each drug over 30 minutes with a half hour break in between.
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I've only been on H&P without chemo since March. I do 60 minutes each with a small saline flush between the two. Liz you might want to try 60 minutes to lessen the side effects you've been experiencing. Some women are doing 90 minutes each, but that's too much time in the chair for me.
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Kdgirl, I stopped taxotere after 3 rounds. Doc would have liked btw 6-8 but my body had other ideas. I started developing symptoms of neuropathy after 2. Then I did just h&p but after 9 months had a reaction to the p. Since then, I've been on h only for the last 3 years. The reaction to p was all over body itch that was determined to be neuropathic itch. My doc said for some people that p acts as an aggravant to neuropathy. With herceptin alone, I have achieved near perfect NED. There is one tiny spot still in my liver that without a biopsy cannot be called as cancer free. A liver biopsy isn't worth it to me so here I am. I have ct scans just once a year and herceptin every three weeks.
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Hawkeye could you not do SBRT to that spot? I did it to my three remaining tiny spots and my CTreports since April 2016 see nothing as my liver regenerated and filled in the radiation holes.
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Bstein, hello. Yes, I could opt for radiation. Like I said, the spot may or may not be cancer. The liver is pseudo cyrohhtic in appearance from the healing of three large tumors and multi focal points of cancer. I've discussed it with both a radiologist and my oncologist and we've come to the conclusion to let it be and watch. I'm good with that.
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- ounds good, I watched mine for one year and there was a possible subtle progression and we did radiation
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I don't get on here too much due to my crazy schedule - but have a few days off this month so taking a moment to jump on. Hope everyone is doing well! I'm still battling fatigue as discussed above. Guess that's just something I'll have to live with. Would love to figure out a pattern so at least I could plan. I have been a zombie this week, but am immediately post-infusion. Has anyone used a symptom tracker (I'm thinking an app) to try to figure out symptom patterns? I downloaded one - Chemowave - recently but quickly unloaded it after reviewing what I interpreted to be its (un)privacy policies.
Hawkeye and bstein, I was interested to see your discussion about SBRT. My Onc and I had discussed that or some form of ablation, but since I got complete response from THP, did not have to go that route. Don't know if it may be something that is re-presented in the future. My impression is that they want to use that type of therapy when tumors are just reaching their smallest, most vulnerable status vs rebounding or growing.
I may have asked this before: my Onc introduced the possibility of discontinuing the Perjta and just doing Herceptin. I told her I don't really want to mess with the combo since it appears to be working and she was ok with that at least for now. It's my understanding that H+P is standard of care for "maintenance." Anyone else run into this? I don't want to pump myself full of a drug I don't need but ... the thing is... you don't know... (this isn't something one of those new genomic tests would provide insight on, is it?)
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bstein... good to see your update. Sounds like it looked like you were having progression so they "zapped" the spots - and it has been effective. Interesting! good to know (for future reference). Thanks for sharing.
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Lumpie good to hear from you and to see that you are doing well. I too have post tx HP fatigue. I had tx yesterday and feel like I am on half power. It usually doesn’t last long, mainly the Fri after my Thur tx. I tend to just ride it out. I do have some initial tingling and burning of hands and feet but again it appears to just be immediately after tx.
With regard to dropping Perjeta, I have wondered about this. It would be easier for me to just have the H injection then. However, while it is working so well I will ride this out.
Hope your fatigue becomes more manageable. I’m afraid I can’t really offer advice as I just tend to roll with it. I am fairly active but not immediately post treatment. However, if it works I’ll stay with this regime.
Liz
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I've been on H & P every 3 weeks and daily Letrozole for a year and a half now, finished Taxol in April 2017. I thought I was "tolerating" this treatment but more recent treatments I feel like I have the flu and am out of commission for 3 days, with nausea and body aches. Anyone else experienced this, and what do you take to ease symptoms. I get treatments on Thursdays so I lose entire weekends.
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I have been on HP only since Aug 2017. I also have tx on Thursdays. Fatigue kicks in straight away and I don’t feel myself again till about Sat lunchtime really.
I take paracetamol and I just rest and drink lots of water. I ride it out but it isn’t fun. I’d welcome any other opinions/ experiences too.
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Lumpie
It has been a year in April that I have been “No evidence of metastatic disease” on scans every three months.. I won’t have another scan until October which was moved to every 6 months. I hope It wasn’t too optimistic moving scans to every 6 months! I was Oligometastatic de novo to liver with a 1 cm. breast tumor Juliy 2015. We followed three non enhancing (on MRI) thinking 3mm lesions were scar fissure. (Someone 20 years out still has tiny unchanged spot) There might have been a “very subtle” change so we radiated them. Now my liver has regenerated and the last 4 scan were great and we moved to every 6 months, next will be in October. I have hope things will stay the same. Greatful foreveryday but secretly fret and worry
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The SEs seem very unpredictable to me - the first months were very hard, then I had a few months where I hardly even noticed that I had my infusion, and then the last two were a bit harder again. My last one wiped me out for a week, but I think it's because I had just returned from a 10 day vacation and was probably a bit run down from overdoing things. I take ibuprofen, sometimes claritan if the bone pain is really bad. For the most part I just ride it out and try to get more rest than usual.
Is anyone else having a problem with foot and leg cramping? I know that cramping can be due to neuropathy, but I'm not sure if that's the cause. I didn't have any signs of neuropathy throughout chemo but three months later it started with intense burning in my feet that got progressively worse. I sure hope it's just a delayed reaction to taxol and not the H&P causing it because I want to stay on H&P for as long as it works. Doubling my gabapentin dosage helped with the burning sensation enough so I could get some sleep, but I'm still plagued with debilitating cramps in my feet and down my shins,and not just at night although it does get worse. It's not from dehydration, and I've already added potassium, magnesium, and now B-complex supplements but can't get these cramps to ease up. I can't figure out what is causing them.
Lumpie I thought I had replied to your question about symptom trackers & ChemoWave, but I don't see my comment now. I was excited when ChemoWave released their Android version & downloaded it same day it was released, but like you I took one look at the Privacy Terms and said NOPE! I think we are among the few who actually read the fine print. I have been manually tracking symptoms and SEs on a monthly wall calendar. I'm not consistent with it, I really only do it when I'm concerned about something and want to see how long it lasts and if I can find any pattern.
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LoriCA, I have occasional severe leg cramps due to the reduced estrogen from tamoxifen and it only seems to happen after a night of more cocktails than water.
Currently, it’s the skin issues, these red bumps are a little itchy and are sore, like a mild fire ant bite. I have 23 on my belly right now, not fun at all but it’s really my only complaint.
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