HERCEPTIN and/or PERJETA Threads
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I’m so happy to provide some potential help! As to the question about H alone or H and P I think - and others have posted as well - that it’s the combo. Either that or it’s the Perjeta. Or it’s post Taxol neuro issue, and Perjeta. I was on Herceptin alone for about 6-7 years and never had this. Truly it’s like no other itch: Stinging nettles with itch. No rash in site. And wakes me at night. I’ll be curious to see if you can get some made up and try it!
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I totally can relate to the itch! I have it on and off, but, believe it or not, I have suffered from it far less since I started to add a minute of cold shower to my morning shower routine. The things we try, right? Anyway, ithas really helped along with just learning to breathe through it.
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I have never had any itching....I did drop Perjeta almost immediately because of SE's, but no itch. Interesting how everyone is so different. I don't get many of the SE's that I hear described, but I definitely get neuropathy.
Mara - I saw your post about nausea related to the CT contrast. I have developed that as well. For the first 6 years or so I didn't have any issues, but my last two scans - I get CT and bone scans at the same time - have been horrible.... to the point that I am considering asking my MO if I can go to every 18 mo or monitor tumor markers more or something. I had one this last October and was very thankful that still all clear, but was completely sick to my stomach afterwards, and didn't get out of bed for 4-5 days. Maybe I already mentioned this...I can remember. Anyway, it's been so long since I have taken Zofran that I didn't even think of that... I also agree that the SE's in general related to treatment get worse over time, which is why I have taken my little treatment "vacations"... I feel like it helps my body reset and grow "healthy" again so that I can jump back into them.
On injections - I don't know how many of you have switched, but this last time I got the BIGGEST bump and bruise on the planet from the shot. Huge... like I'd been hit in the leg with a hard baseball going 100 miles per hour. That was over 10 days ago and it's still completely black and blue. Small price for the 5 minutes that it took, but I thought I would mention it!
I still have my port. I made a THIRD appointment to have it out... we'll see what happens.
XO
Andi
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I wish Canada was less restrictive about drug honeymoons. I would reset every 4 to 6 months. As far as Zofran, I will ask for it again as I had nausea within the last week. It's not brain related because it happens at the same time every cycle. If I can't get it from MO, will go to PCP for it instead. As far as my MRI with contrast, will ask for alcohol wipe to sniff as this helps avoid nausea as well.
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I wonder if anyone experienced side effects from Kanjinti. I have been switched from Herceptin to Kanjinti without notice what most likely had been the reason for my increased side effects last year which I developped after the switch: more neuropathy in feet, a gastritis, much weaker finger and foot nails and a constant sensitive mucosa. They didn't inform me because “they are not obliged to inform their patients when they switch them to a Biosimilar" although Biosimilars are known for their potential to cause more side effects. I found out a few months after when most side effects still weren't as strong as they are today so I couldn't make a connection
I will try to go back to herceptin and see if it improves then but wonder if anybody made a similar experience.
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ClementineC - I have never heard of Kanjinti! I will ask my oncologist about it the next time I see her. I also have increasing neuropathy... mine never went away after the chemo I had 7 years ago, and after each infusion it's really bad for about a week. It's one of the reasons I have asked to go on Herceptin "vacations"... sometimes it creeps up my legs and I literally cannot stand it. I also have weak nails. I am very surprised they didn't inform you!
I am just back from a vacation - warm and sunny Hawaii and now back to cold and snowy Colorado. I am scheduled to get my port out again next week.... hopefully third time will be a charm and I won't back out!
Hope everyone else is doing well!
XO
Andi
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Andi67, Kanjinti is from AMGEN and has been approved 2018. My hospital has a contract and switched every Herceptin patient to this Biosimilar because they save costs and time. I have been able to speak to my Gyn who ordered Herceptin subcutaneous to be able to supply the original trastuzumab. Some biosimilars are known to cause more side effects so I hope it's just this and my pain and neuropathy will subside. If it doesn't help we'll space out treatments to monthly and slow timing down. Otherwise we have to consider missed out progression and bring next scans forward. All the best to you XO Clementine
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I too was just switched to Kanjinti. I just had my last infusion with Taxol. I now start my every3 weeks infusions of kanjinti alone and was looking to see what side effects people are experiencing.
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Thank you for the information. I am definitely going to ask about it when I see my oncologist again.
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Mmm... it is interesting. In our hospitals people who used to get Herceptin, still will get Herceptin. Others, who start anew, will get a bio-similar... Saulius
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yes, saulius, I read something to that effect when the biosimilars were first approved. I thought that would be the case for everyone. That those on trastuzamab would stay on it
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I fear I developped an allergy against trastuzumab / pertuzumab!
My neuropathies got worse during the last weeks, feet and hands hurt bad, breathing is okay but my lung feels completely blocked, and my stomach mucus is infected since almost a year. All my reports are fine - I am no evidence of disease below the neck, the radiation necrosis in my brain is disappearing, my heart is good. It's just I feel so worn out, my energy is very low. Has anyone experienced this overreaction on trastuzumab and pertuzumab?
What's the procedure? Stopping it? Or slowing down the administration time? Spacing out the treatments? Or just treating the symptoms? I need some hope, I really wouldn't want to stop a working treatment and I'll see my Gyneologists only in the beginning of next year.0 -
Clementine, ask about taking a drug holiday. Not meaning permanently, just a few weeks off can work wonders on side effects and you may find they go away.
I was having problems with exhaustion to the point that I could not look after personal hygiene or go out at all. My MO put on almost 3 months drug holiday. During that time, all side effects including fatigue disappeared. I then went back on Herceptin and am not dealing with nearly as many side effects as I had before.
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Thanks, Mara! Hope this is the answer! My primary care doctor stated I must have some kind of allergic reactions to something according to my blood work so hopefully a break does the trick. Have a good weekend y´all
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Hi Clementine - I just PM'd you, but did so before I saw this post. Yes, since you are NED below the neck and no progression, I would ask for a six week - 3 mo holiday, just to get your strength back and your mental sanity restored...….
XO
Andrea
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I wanted to share this article with you, but every time I try to cut and copy it gets cut off and wont' link. Trying one more time... this is my oncologist and this new drug (oral!) sounds very promising!
https://coloradocancerblogs.org/tucatinib-her2-breast-cancer-brain-metastases/
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Good to hear about that study on tucatinib because if my brain met were to progress, unless they showed up in a different spot, I could not be radiated again since I already had WBR in 2016 and local treatment to the surgery bed in 2018 when a couple of spots were trying to grow.
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Great news on Tucatinib Pretty sure it would even work for brain protection if given as firstline Stage IV treatment for mets below the neck, just like Kadcyla is given sometimes. Fingers crossed!
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Tucatinib is very exciting, but they expect that it will become the standard 3rd line of treatment after Kadcyla. In the back of my mind I can't help but wonder, what happens if we burn through that treatment line early and later develop brain mets? They don't yet know if it will work to prevent brain mets. The current study/trial on preventative use is I-SPY2 in the neoadjuvant setting, but it will be years before they have sufficient data. And the trial only includes Stage 2 and 3, and regional Stage IV where supraclavicular node is only site of mets. Participants must not have had any prior chemo or radiation. So it won't really answer if tucatinib will work as a preventative in those of us who are already Stage IV and have cancer spreading through our body.
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I wish my cancer centre did the ommaya port to do intrathecal Herceptin. I have had an excellent response from the neck down on Herceptin as have been NED since 2015. If my brain is what is going to screw up, it would be nice to have that as a treatment option since I have gone through my WBR and spot treatment.
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The thought of an ommaya port scares me so much mara. I was just talking to my husband about intrathecal yesterday when explaining why tucatinib is so important. From what I've heard, tucatinib should be approved in the first quarter of 2020 and hopefully it will be approved in Canada shortly after.
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Subcutaneous HP combination is coming: https://www.cancertherapyadvisor.com/home/news/con...
Saulius
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Wow, I just found this in FDA web-site: "Food and Drug Administration granted accelerated approval to fam-trastuzumab deruxtecan-nxki (ENHERTU®, Daiichi Sankyo) for patients with unresectable or metastatic HER2-positive breast cancer who have received two or more prior anti-HER2-based regimens in the metastatic setting. More Information. December 20, 2019"!
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just was informed I’m being switched to Kanjinti. Doctor tells me insurance isn’t paying for herceptin now that this is available...then asks me if I’m ok with it.
I feel like a lab rat. I better not get sick from it
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BSandra: wow --- a subcutaneous injection v infusion. I don't mind my infusions -- it gives me a little uninterrupted reading time.
I don't even mind my port all that much, except for the fact it looks like a home for a very small alien species. That being said, wow again - Olma61: **$&# insurance companies!! I hope Kanjinti works well for you and doesn't make you sick. Keep us all posted!!
Best wishes for 2020 to all!!
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🤨. Fingers crossed it's the same - unnerving.
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Yes! I feel it was just sprung on me, which is probably the worst part. No notice. Yesterday was the first day they were using it, one of the nurses told me. And I wonder if my insurance is really insisting on it or if the reimbursement is the same but better for the cancer center since this is a cheaper drug.
Well, so far I feel more tired than usual but I also had my Xgeva shot yesterday so who knows. Let's also hope it is just as effective.
I guess I don't mind doing my part to help the cancer center remain financially solvent as long as this drug is really the same. But I remain suspicious, lol. "Trust science" yeah but also, there are always those "hey guys, guess we were wrong about so and so" moments.
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I was switched to a bio similar a while ago now here in the UK. As far as I can tell there is no difference in SEs. Just my experience. Day3 is typically a bit rough with some nausea, body aches and increased fatigue. Still on HP and nearly 3 years post stage 4 dx ( well March, but I’m sticking with nearly! )
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Thanks for sharing your experience, jackboo09
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Dear Olma, here those who got Herceptin before are left with herceptin, others (new ones) are given bio-similar. Clinical trials show these bio-similars are same as originals... hope so! Saulius
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