HERCEPTIN and/or PERJETA Threads
Comments
-
Concerning the bumps...I get a few usually on my arms and belly after each treatment
0 -
Thanks for everyone's input re Herceptin + Perjeta. I was also just reviewing the ASCO recommendations. It clearly says both so I plan to advocate for that.
The middle ear issues sound awful! Re misreading the MRI, we are entirely at the mercy of our care team, including the radiologists and pathologists we never meet. Sobering. I do know people who have gotten second opinions on the radiology results .... but it doesn't seem realistic to do that every time.
I persuaded my MO to recommend a Shingles vaccine before diving into this treatment. Shingles on top of everything else I do not need! If you are worried the possibility of a shingles outbreak, have not gotten the vaccine and, depending on where you are in your course of treatment, you might ask your PCP or MO about it.
0 -
kkrenz - I hear ya. Similar experiences with different issues here. So frickin tired of having to be my own doctor. But we can't stop ...
>Z<
0 -
Hi everyone
I had HP on Thur. Been on this since Apr 2017. There was a recent break in treatment and I had the loading dose of Herceptin on May 4th, then a usual cycle onThur 24 May.
For some reason this latest tx has given me horrible all over body aches that do not seem to be eased by paracetamol and ibruprofen. I am normally fine on this treatment but it is now 4am on Sat and it feels like I have flu but without a cold.
I worked yesterday and really struggled. Any thoughts on why I might have developed this increase in SE’s now?
Liz
0 -
Hi Liz, glad to hear that you were able to restart H&P. How is your ear doing? Hope you are feeling much better than you had been.
Sounds like maybe you had built up some tolerance to the side effects over the past year, but after a break now you're starting from scratch all over again? I've only been on H&P since February (5 doses, #6 will be Tuesday) but it still hits me hard for several days following an infusion with the aches, chills, and severe headaches. The SEs seem to get milder with each successive dose, which leads me to think it could be a tolerance issue.
Lori
0 -
Hi Lori
My ears are 80% better according to the ENT doc but I still have fluid behind them and I get a bit of dizziness and crackling still.
The post HP aches did ease but that was pretty horrible and has made me a little wary about having the next one. Hope it’s just a one off.
L
0 -
At least that's some progress Liz, but you must be so tired of dealing with the ear problems. Did you ever determine what caused it in the first place? I know that H&P isn't supposed to be ototoxic, hoping that two of you reporting same problem is just a bad coincidence.
Some women recommend Claritan for the body aches and joint pain. Might want to give it a try if you have problems again with the next one and it doesn't conflict with anything else. Ibuprofen does nothing to help me, and I've also been on much stronger pain meds (morphine and fentanyl) that have been no help with the H&P aches and pains.
I understand completely about being wary of the next infusion. Just when I finally start feeling somewhat normal, it's time to start the cycle all over again. I start with the chills and aches that same night, then around 2 days later I get a killer migraine type headache (with nausea) so bad that all I can do is wake up, take two sips of coffee and go right back to bed for the rest of the day. Right now I schedule my life around being completely worthless the week of my infusion. If I try to push through it when I feel like crap, the SEs only get worse until I end up spending an entire day in bed sleeping, so I try to take it easy that week. Just had #6 on Tuesday, no killer headache yet so maybe I'm finally building up some tolerance but the pain in my knees, legs & feet, chills and night sweats last night were so brutal that I didn't sleep all night. It's still better than dealing with the SEs of some other treatments as long as it does what it's supposed to do, and on the up side I haven't had a problem with diarrhea like many women do (although now that I've stopped the opioids we'll see if that changes) and no problems with the cardio-toxicity (yet?).
Still, it is strange that you didn't have these SEs when you first started H&P last year, and that they only developed after you took a break. It is a common SE for H&P.
Hope your next one is easier on you.
Lori
0 -
Lori,
Think you for your post. I will reply in more detail. Just on my way out for an evening walk.
It is very kind of you to give me your insight in such detail and I am sorry you are suffering.
Hate this disease! Errr!
Hugs,
Liz x
0 -
Hi Lori,
I am sorry to hear that you lose a week after tx. I have recently had an occupational health assessment with a Dr as I am working full time and there were 5 absences during the Jan- March period. He put these down to a lowered immune system.
I will ask for slower infusion on 14 June and pray that the aches are minor. Mine lasted until Sun morn with the early hours of Sat being the worst.
Did you suffer with migraines before this tx? Headaches are listed as a side effect.
Diarrhoea isn’t an issue with me either and so far my echoes are fine too.
I will let you know if I get anymore info. I am due to have a tx on 26 Jul and then go on hol on 28 Jul. Hope I am not affected again. Ibruprofen not effective either.
Sending love,
Liz
0 -
I had migraines when I was younger Liz, but hadn't had one since I was in my 30s (54 now).
There is a thread in the HER2+ section of the forum on Herceptin Joint Pain and Fatigue with several women reporting that the SEs got worse over time for them, to the point where they weren't sure if they could finish the treatment.
This round went much easier on me, Day #3 and I still don't feel like I have been hit by a truck and no headache yet, so I think I'm adjusting to it. My infusion is 60 minutes for each of them. Some women go 90 minutes to ease the side effects, but between lab work, MO consult and infusions, my day is long enough as it is.
Love back, keeping my fingers crossed for both of us for mild SEs.
Lori
0 -
Lori,
A quick reply for now. Perjeta has always been 30 minutes for me but last time the Herceptin too was only 30 mins.
I will question this next time.
Hugs,
Liz x
0 -
30 minutes for Herceptin would definitely explain why the SEs were harder on you this time. I would insist on 60 minutes Liz.
0 -
For those of you with skin issues, I just left my appointment with the skin/melanoma group at MDA and they’re pretty sure that the acne/belly bumps are from Perjeta. This happens on occasion about a week after my infusion and only lasts a few days. Itis somewhat common with the anti HER2 treatments but since it does cause any discomfort and resolves on its own, we won’t specifically treat it. Should it get worse, they recommend antibiotics. Just FYI 🙂
0 -
Oh illimae I'm so sorry that is happening to you! I'm glad to hear that it doesn't cause any discomfort because it sure looks like it would.
0 -
Lori, it wasn’t a great look for my passport photo but as far as cancer treatment SE’s are concerned, I consider this a minor inconvenience 🙂
0 -
Oh no illimae, that's some poor timing huh? It's not like you haven't already suffered enough indignities with this damn disease and treatment. But you are right about minor inconveniences compared to some of the SEs we experience from treatments, and it sounds like you feel well enough to travel so that's good to hear. Where are you and your passport headed?
Lori
0 -
FM508- I had shingles earlier this year as well! I’m in my early 30s. It was definitely stress related (but I’m sure the meds played a role) and my oncologist recognized it immediately. So crazy!
Limpie- I’m a year post diagnosis as of mid-March and still on H&P. My onc gave me the option of going to every 4 weeks, but I’m sticking with every 3, with an extra week if schedule requires
0 -
Liz- Glad to hear the ear is clearing up a bit! I hope your next infusion is ache and pain free!
0 -
LoriCA, I’m planning on a trip to the Bahamas this fall. I love beaches, grew up on the beach in Southern California, just got back from Florida a few weeks ago and am looking forward to Kauai in October. I’ve been very lucky to remain active and major symptom/pain free throughout treatment 😀
0 -
illimae, I can certainly understand your love of the beach. I spent the first 32 years of my life living on East Coast beaches and now 15 years on the Southern California coast, with only a few years of being landlocked in-between. I often take it for granted, but I sure missed it when I lived inland. Enjoy your travels!
Lori
0 -
MommyErin, I also had the dreaded shingles.....luckily it wasn’t super bad. I now am very diligent, perhaps even a bit paranoid, about another flare up. I caught one in its infancy, got on the anti virals and it went away quickly. The medications that hopefully save our lives also cause other craziness!!
Lori & Illimae, oh how I love the beach also. Grew up in San Diego but went to St. Louis for college where I met my hubby & have been landlocked ever since!! Not complaining as I absolutely love Wisconsin. My hubby recently retired so we are on an extended celebratory vacation on Seabrook Island, SC. Am loving the sound of waves, smell of the air, pelicans soaring, sunshine & the occasional thunderstorm. I honestly believe this weather is good for my health which is precarious at best. Although we will never leave WI due to kids & grandkids I think we have decided living on the water might be beneficial during winter. Kind of freaked out about going to another Cancer Center (just for flushes & blood work hopefully) but then again I have never met an oncology nurse I didn’t like!!
Hope everyone has a good week. Take care of yourselves! Jul
0 -
Oh how I love the water, I just feel so at peace when I'm around it or it around me I should say.
I am landlocked as well (lots of beautiful lakes though), but my family goes down to Florida every year and we take our boat and do our own dolphin sightseeing. In 2015, my husband and some friends went on an adventure and took our boat from Ft. Lauderdale across to the Bahamas. It was amazing! The slow pace of island life is good for the soul. And body. Can't wait to go back, maybe I can feel good enough in 2019. Happy Wednesday everyone!
Jenny
0 -
Illimae: I’ve been on H&P almost 4 years now and get new bumps after every infusion. I only get four or five and they mostly are on my arms...sometimes on face or abdomen. Weird
0 -
Hi Beatmom,
Just wanted to add how fantastic it is that you have been on HP for 4 years. It gives me hope that I too might have a long run. I had my first HP ( along with 4 taxotere) in April 2017.
Liz
0 -
alwaysbepos - may I ask where in Florida you go to every year? Do you stay long enough to need the services of a Cancer Center like a flush or blood work? That is one of the first things I check for unfortunately! My Oncologist was great about ordering what I will need while away from my home center! I also have to check with the local centers to see if they will allow orders from a non-affiliated doc. Thus far we have found nothing but kindness and cooperation. We are looking for a place to “snowbird” now that hubby is retired. We are in the low country now but thinking farther south will be better in winter.
Hope everyone is doing well. Hugs, Juli
0 -
these bumps y’all are talking about...are they large and painful? I have random bumps, but they seem to come out more when I get sweaty and in places like on my bra/panty line but not always. This has been happening for several years but never thought that it could be treatment related?
And one summer, at the beach I became covered with bumps in my torso. It was painful and the dr at the emergency clinic there had no answers. Just gave me steroids and antibiotics. But they were different bumps then the above mentioned ones I get occasionally.
Weird
0 -
kjones, mine were not painful, more of an allergic reaction type thing. The skin onc said she sees it with Perjeta in some people and the abnormal response of the skin indicates that Perjeta is doing it job. Absence of bumps don’t mean treatment isn’t working though, it just affects people differently. So far, it’s a minor annoyance.
0 -
Juli24, we stay just north of Daytona beach, but we only stay for 1-2 weeks so I don't mess up my 3 week treatment schedule. I have only been in the sucky BC world for just over a year now and haven't traveled much yet. I'm hoping to get back to the Bahamas next year, we'll see what MO says. My cousin lives near Pensacola, FL and says that the Baptist Hospitals in FL are awesome. My cancer center is also part of Baptist Health here in KY and they are all so wonderful, so compassionate, each employee has a special place in my heart.
Take care
0 -
illimae - These are like the ones I get! Often on my face, like you. Sometimes on arms, legs or torso. They migrate around. Just this cycle, I started keeping a note on my calendar about how many days out they appear and when they go away. Hope I can figure out the pattern. Sometimes they itch like crazy. Occasionally they bleed. I was given an Rx antibiotic ointment which I have only used if they itch or bleed. Can't really tell whether it helps or not. My docs don't think it is a SE of the Perjeta. {insert eye roll}. Like you, as SE's go, I guess things could be worse. Interesting that the skin Onc told you it can be related to meds working. I saw an interview on Practice Update with an Onc who noted that the E in HER2 is "epidermal" and ... this is rather technical but... that, at a cellular level, there are similarities in the HER2 being attached by the drug and the epidermis - as in our skin - so it makes sense that there could be SE's that manifest in our skin. The doc in the interview was saying that HER2 treatments can be hard on our skin. He did not give details but I thought this was interesting. {Why don't they tell us this stuff?}
Beatmon - 4 years! that is very encouraging! I know a woman who has been on Herceptin for 11. She is triple + so she does the hormone Tx, too, but that is encouraging to hear that people are having good runs!
I'll just throw in that I love the beach, too! Looking forward to a family beach trip later this summer.
In follow up to my May 15 post, my MO has not mentioned taking me off Perjeta again, so I hope I am staying the course. Hope I don't show up for Tx one day with no order for Perjeta! BTW, my late May MRI was good. NEAD for tumors (yeah!) but there was some "heterogeneity" (liver).
Can I ask... do you all struggle with fatigue on H&P? I have been really wiped out. My labs are pretty good so I don't have much other explanation. Being post cytotoxic, maybe I have/had unrealistic expectations about being 'scott free' in the ugly side effects department. I hate feeling exhausted all the time.
0 -
Lumpie yes I struggle with fatigue too. It's terrible the first week after my infusion , then progressively gets a little better until the next time, but even at my best I'm just a shadow of my former self. Sometimes it slams me like a ton of bricks, as in "I need to stop what I'm doing and close my eyes and rest for 20 minutes, right this very second". My labs are also fine.
I wasn't sure if it was just me being lazy after spending 6 months being fairly inactive, maybe a combination of both. But H&P hasn't been a walk in the park for me between the bone and joint pain, fatigue, blinding headaches, night sweats and sleeplessness (I can't remember the last time I had a decent night sleep without waking up every half hour), I'm worn out! This last round was a bit easier on me, so I'm still hoping that as my body gets used to it the SEs will improve (although now that I'm off all opioids the D has become more common). I see that you've been on it for more than two years and still have the fatigue?
I try to not let it get me down, it's still much better than chemo and beats the alternative. Congrats on the NEAD!
0
