HERCEPTIN and/or PERJETA Threads
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I am so jealous that people are getting the Herceptin injection now!
I am going to ask my mo next appointment if she can just go ahead and order it for me. I still have to get Perjeta via IV but I don’t care , any minutes they can shave off my appointment is fine with me. Also want to be around to say I’ve been on it for 7 years in five more years like Andi She really is an inspiration and a role model. Truly grateful for women like her who share on this site.
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LA212, I wouldn't worry about a slight difference in the tumor markers. Mine was 306 when I was first diagnosed last year and as of Friday they were at 15.9. Woo hoo!!
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hi everyone,
I just found out I will be getting KANJINTI during infusions. It is a replacement for Herceptin. Has anyone else heard of this new bio-similar that’s on the market now. Would love to hear any feed back.
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Motherofmany, thats a new one for me, I'm interested in what everyone has to say.......
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KANJINTI was just approved a couple months ago, I believe in June. I've been wondering how it is priced, and if insurance companies are going to make us switch if it is priced substantially lower than Herceptin. Amgen does have a co-pay assistance program for the drug similar to what we have for Herceptin, so at least there's that, but not sure I'd want to have to adjust to a new drug, even though it's a biosimilar, just because it's cheaper for the insurance company.
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hi all,
LoriCA: Yes it is considerably cheaper and I believe this is the plan to replace Herceptin with this due to price tag.
It makes me really nervous 😩.
I did however search it on this website and it says not to change if you’re already on Herceptin.
Wonderful if they will adhere to these recommendations.
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Hello ladies. It's been awhile since I have posted, but was hoping to get some info. (and I hope this is the right thread for this question) I was on Carboplatin, Taxotere, Herceptin and Perjeta from the start. After finishing the cycle of 4, I have remained on the H&P and receive it every 3 weeks. Since dropping the Carb & Tax, I have had the WORST itching ever. I have tried everything and I mean everything! This isn't a typical itch. It is like a burning, stinging itch. The only thing that relieves it is ice. Anyone else with this issue?
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A crazy intolerable itch is well known with Perjeta, to the point where some have dropped it and continued with Herceptin alone. I’m sorry you’re dealing with this.
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I get itchiness as well, not quite to the point you mention. I am trying out Claritin for a few days to see if I can avoid those effects. I took one the day before infusion, one the day of infusion and I am undecided how many days after infusion.
So far, I have not got the drippy nose feeling and although there is a very slight skin itch sensation, it is not as strong. The Claritin being an antihistamine will tamp down the inflammation which may assist with some of the skin side effects. I am not going to take it everyday and may stop tomorrow. We will see what I decide, if the itch returns, I can always try another Claritin. My MO is ok with taking the Claritin. If you do, makek sure it is non drowsy. I also find my sinuses feel better.
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Claritin is a life saver, it helps with a lot of things.
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The only thing I noticed after the Claritin was very slight drowsy feeling ( I took non drowsy) and had a loose stool. That was taken care of with immodium so I think I will keep taking for a few days and add immodium with my breakfast cocktail of pills. Don't like the looser stools since then I feel compelled to wear tena underwear. I have noticed my itchiness is so much less. Got a little but it did not last as long and the nose has vastly improved. Just have to make sure not to constipate myself.
Edited to add, yesterday was my first herceptin since June to regain strength. I was worried it would hit me hard but so far not so bad. Just keeping more active and we will see how it goes. Perjeta will be added in 3 weeks. Where I am, I cannot simply drop Perjeta without losing the Herceptin so hopefully I can just have Perjeta every six weeks and continue Herceptin every 3 weeks.
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Diarrhea/loose stools can be from H and/or P themselves - may not be the claritin.
I've been taking daily Claritin from the beginning. Definitely helps.
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There's a reason many people call it Poo-jeta!
Thankfully that SE is only mild for me. The claritan also helps with the bone/joint pain in legs that H&P can cause, but my upper arms used to itch so bad that I would scratch until they were bleeding, and nothing helped. Topical ointments gave me some mild short term (like ten minutes!) relief. I used topical benedryl more than the steroid cream because my pharmacist warned me that my prescription strength steroid cream would cause my skin to thin if I used it too often or put it on too thickly. Maybe not a big concern on the arms, but definitely a concern for the upper chest area where the skin is already thin. If the itching was keeping me awake I went straight for the steroid cream.
I had to take a break from H&P last winter, and when I restarted I no longer had a problem with the itching, I just get a occasional mild rash on my upper chest.
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Hah yes POO-jeta indeed. The itching - I had awful itching in the beginning too. On my back where I could not reach it all - I was using brushes and then sharp objects to scratch and I also drew blood! I was taking mushroom extract at the time which might also cause itching. I stopped the mushrooms and the itching subsided - not sure what the real cause was but I was glad it stopped because it was awful.I was getting Benadryl in the pre-meds, too. I was on Taxol at that time.
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Olma, the slight bit of loose stool was after I had been off both Herceptin and Perjeta for two months.
Happy to report that Claritin has lessened my symptoms. No drippy nose, itching is probably 90 percent less and no cramping at all. This is really good. Took some immodium today to ward anything off when took my Claritin.
I will continue the Claritin the day before, the day of and the day after my infusion. Will take as needed otherwise. Not sure if three days are enough but will start with that and see if anything else develops. Will be interested what happens when I get both drugs next infusion and will find out for sure if I can have Perjeta only every 6 weeks. My MO is probably on board but my province may not allow that. We will what happens.
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re claritin
May be helpful in more ways than one
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oh, sorry I misread you Mara! Do hope it goes well for you!
Anotherone, good to know that Claritin might have an extra benefit.
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HAHA @ Poo-Jeta! I'm calling it that from now on!
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I love poojeta too!
The Claritin is definitely helping. My nose is dry and I have been exercising and it did not even drip which is great. Less itchy crawly sensations under my skin too.
I am unsure if I need to take it everyday. I will decide later.
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Hi jg12705
I am on H&P since April 2015. Everything was going smoothly until (a few years into treatment) I developed that "itch" that you are talking about. It is particularly bad on my right lower arm, neck and head (no nits, I promise). I tried everything from antihistamine to calamine lotion, itch gel for chicken pox, ice packs, cold face cloths etc. I actually burnt my arm with ice packs and that was the straw that broke the camels back. Off I went to see a Professor of dermatology and was put on a high dose (2 morning and 2 in the evening) Telfast (fexofenadine). This certainly helped but only recently the itch is back with a vengeance. I have gone back on the antihistamine brand name cetrine (one tablet) at night and things have calmed down again. I too have drawn blood and permanently marked my skin, the Prof said that I must refrain from putting extreme cold on the arm as extreme heat or cold is not good for the skin. The Prof told me to use the "silcocks base"in shower and load on the "Aquerous cream BP" to prevent my skin from drying out. Despite this serious side effect, I am so grateful to be alive and often think of Oncologist Dennis J. Slamon who invented Herceptin. Please God there is other wonderful research Oncologists and Scientists working away each day on discovering the next line of drugs that will prolong all our lives. I am 4 years and 4 months on this protocol and hope to get many more years. Thanks to all you Ladies who post as the information you share is crucial to the well being of a lot of women who read these threads.
Congrats to all who shared positive news because it is this news that lifts me.
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I too began treatment with Herceptin, Perjeta and Taxotere. Dropped the Taxotere after 3 rounds and continued with H/P. I too developed the intense itching. It was an itch like I had never experienced before and have scars on my forearms and the middle of my back from it. What worked the best, although short lived, was ice. My oncologist sent me to another doctor who specialized in allergies. I'm not sure the exact name of what she did, but she was fascinating and determined to isolate the histology of the itch. Eventually, after a month or so she determined the itch to be neuropathic itch. It's also called neuropathic pruritus. Which is hard to diagnose and can be even harder to treat. In my case, what worked was to drop Perjeta. Perjeta is thought to be the cause of the understudied consequence of peripheral neuropathy and neuropathic itch. That doctor told me the Perjeta was like an incessant poking of the neuropathy. I was game to drop it because the itch was seriously impacting my quality of life! It took nearly 2-3 months after dropping Perjeta that I no longer suffered from the itch. At the time of dropping P, I was still actively lit up with cancer. Another 8-10 months on Herceptin alone, I am NED. I hope my words help someone!
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of course it does , I am storing all the info in my head as I am to go down this road anytime soon. Thank you for writing xx
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I have just started taking Claritin with my infusions and have continued it because it helps so much with the itching sensation. It has reduced the drippy nose alot, not as much joint pain and stiffness and the added benefit of the itching sensation cut by a major percentage. It is not complelely gone but more than 75 percent reduced.
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Thank you all for the info! I am so grateful to be here and shouldn't be complaining about itching considering everything. Its just so maddening and causes anxiety for me if I am out and about and have an attack. I too have scars from scratching to the point of bleeding. What is so weird is that it started on my arms, went to the neck and the arms cleared up. Now I have it neck, arms and chest. It scares me to stop the perjeta in all honesty.
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jg12705 I feel the same way, I figure that itching is better than dying so I'll just deal with it. I'm also afraid to stop the Perjeta. If I were NED I might feel okay with stopping it, but as long I'm not NED I tell myself that it's a very annoying but minor (not life-threatening) SE.
Never feel bad complaining about side effects. We need to be able to vent about them, and I know that it helps me to know that others are going through the same thing.
Our MOs will often tell us that things aren't a SE of a drug, and when we come here we find out that many others are experiencing the same thing. My MO kept trying to tell me that my constantly dripping nose wasn't a SE of Herceptin and that it must be allergies. I learned that almost everyone on Herceptin deals with the runny nose. I posted on Twitter about it one time and 58 women chimed in with jokes about it.
Lori
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I took claritin for a total of 5 days. Side effects like drippy nose, itchy skin sensation and cramping are greatly reduced. Joint pain is much less. If I find too much itching I will take it more often. I did have a loose stool with the first one so I cut an imodium in half and took 1mg with claritin with breakfast. Did not have issues when doing that.
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mara51506 - I will give the Claritin a try. I am game for anything that may help. LoriCA, yes!! I feel like the medical staff thinks I am crazy or just whining lol! I kind of compare the itching to being hangry!!! Once it flares up, I need my ice bag stat!
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I did take another one today, the itchy sensation occurs all over my body, including the groin area. It's not constant but annoying. Itchiness still there but less bothersome, nose dried up right away. I still am not going to take these everyday as I have no actual allergies but the itchiness is not going anywhere soon. I certainly did not miss the itchiness while on treatment break. The good news is for me the itchiness and other symptoms did go away so if I need another break, maybe I can have one every few months. I wish I could just drop Perjeta but then my government would not fund it and I would be put on something else.
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I have the intermittent itchiness as well from Perjeta, but I have found that CBD infused salve helps a lot! I use a basic over the counter version made from hemp.
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Do you know how many mg CBD is in the salve? I will give that a try too! I am going crazy with this! This last week has been over the top
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