HERCEPTIN and/or PERJETA Threads
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Thanks illimae, she is continuing to loose weight since T ended. One change she did to her diet after her diagnosis is that she turned vegan from vegetarian. Perhaps that's causing this weight loss.
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nothing against vegan but perhaps it would be better to get the calories from grilled cheese sandwiches and things that will help her gain, then adjust her diet when she’s at a more desired stable weight. I’m not expert but I’ve lost and gain several times on cancer treatments.
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Gamma. Not sure why your wife chose to go vegan. One thing I've seen is how quickly someone can lose weight in a medical emergency. I am many pounds overweight, and my medical team has told me several times not to lose that weight, that I might need it when the chips are down. I have read that smoothies are a good way to keep up or gain weight. Perhaps your wife can talk to a nutritionist at her cancer center. Stage IV is a bit of a long game, balancing things out. I do have a stage IV friend who is vegan but she is doing very well, so in a safer space. Sounds concerning, the continued weight loss
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Thaks illimae and gonegirl. These two are indeed good suggestions.
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after all my 5 months of chemo the plan is H/P…y'all have me excited and scared. Guess that's MBC life. Hey ladies
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try not to be scared HP is a pretty gentle treatment especially compared to chemo and for me it’s been super effectiv
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Olma thank you- I am trying not to be scared but I am. Especially with 5 months of chemo coming up. But I’ll do whatever it takes to raise my babies for as long as God allows.
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Hello! I read that itching is among the side effects of HP long term. Will appreciate any insight on this side effect and how best to manage/control it.
Thanks in advance.
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Gamma, it’s the Perjeta itch! Mine comes and goes. It might get crazy for a couple days, then nothing for months. When it is bad, I just use over the counter anti-itch cream.
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Gamma, I find that taking a Claritin pill helps a lot with the Perjeta itch. It is weird as I you get itchy only in certain places. For me it is my left wrist and back of my neck. Like Mae said, it comes and goes. But I’ve been living with it for six years now, so it’s very doable.
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Hey Everyone, haven’t posted for awhile, started following this post specifically because of the Perjeta itch ( specifically on back of neck area, arms and hands ) . I went as far as to print out all the replies to show my Dr. (who had no solutions and basically poo pooed me and my complaints ). After being NED for 2 years now, I took the leap and stopped my monthly infusion of Herceptin and Perjeta in July of this year. It took almost 4 months for the itching to stop….but one day I woke up, and I thought, wow…I haven’t had to get my ice packs in awhile…I answered years ago in this thread, but will do so again .So here is what I did to help
Ice Packs ( the soft gel kind- buy several - they don’t stay cool for that long , usually my intense itching happened at night, when I got warm under the sheets )
Avoid high sugar items ( after drinking a root beer I had an intense attack )
Avoid Red Wine ( another trigger 😞)
Sun/ heat/ getting over heated -
Claritin / Benadryl on occasion helped somewhat but not 100%
Numbing lotions with ice pack helped most
Hope this helps Gamma!
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Dear cgull - were you stage IV at diagnosis? If so, congratulations, you are very brave. It'd be very interesting to know your story and how you got to NED? What did your doc say about your decision to stop biological therapy? Thanks a lot, Saulius
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I have a question on NED vs NEAD. I'm still learning and have been de novo stage IV since May. Isn't NEAD usually used with stage IV since it can't be cured?
My scans don't show any active disease since August but even I can still see the signs of the lesions on my liver and I'm not a doctor. I believe I'd be considered NEAD at this point.
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My pet scans still show sclerotic bone lesions but with no hypermetabolic activity - the notes in my chart next to my scan say “NED". My endocrinologist told me recently it's “amazing that you are in complete remission". I think NEAD (no evidence of active disease)is probably more precisely correct but it's just small differences in terminology, especially when people use these terms casually
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Olma, Kris... here in Lithuania our doctors never use NED/NEAD/Remission for stage IV. They always say "stable disease", and NED for early stages, for those patients who are "cured" but are under observation. This is normal, in my opinion, as we know that late relapses happen in up to 30% of early stage "cured" cases. These terms are just a game of words, however extremely important, especially for stage IV patients. I remember I could not hear words "stable disease" when my Sandra was absolutely healthy (NED). I got used to that, slowly, steb by step. If we recognize that even "healty" people have cancer cells occurring in our bodies that are handled by our immune systems, we can say that all of the humanity is in remission:)) So... Kris, Olma, if you guys feel healthy, you are healthy, that is it! Everything else is just psychology... Saulius
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Agree, Saulius thanks for the support! I m happy today I finally had my thyroid nodules biopsied and no cancer was found! And my oncologist is letting me stretch my next appointment out five weeks instead of three so I can travel for the holiday!
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Olma, that's great news on your thyroid and I'm happy for you that you'll get to travel for the holiday.
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Olma - that is super great! Have a nice holiday:) Saulius
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cgull: did you stop both H and P? Perjeta gave me a rash on my forehead for awhile then seemed to clear up. I don't get much itching except for a spot on my upper left arm which isn't related to Perjeta but something happening in the marrow. I would be afraid to quite any treatment unless it was intolerable.
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took a break for a minute but wanted to come here and see if anyone else heard of the Herceptin/Perjeta combo injection? Phesgo or something like that? I was offered it…once I'm completely finished with these big boy chemos. Would love any feedback…
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Barb,
I don't have firsthand knowledge of what the injection is like but was offered it. I've heard it's much quicker of course. There can be some burning sensation but it's better if they inject it slower. I haven't tried it yet because I have a port and also get zometa infusions. I figure if I'm already using the port and have to keep it flushed I may as well stick with the infusions.
I'm also interested in anyone's firsthand experience.
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im getting PHESGO since July, i love being off of infusions and getting out of the cancer center sooner. It seems to be working just as well.
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Olma, do you have any discomfort from the injections and how long does it take?
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they give it over five minutes, sometimes I feel a little sting when the needle is removed, nothing terrible. No other bad effects
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Insurance denied Phesgo for me, but I wish I could get it. I'm going to keep trying. I had to switch to a new oncologist last February and she is leaving her practice now too so she didn't advocate for me with insurance. I'm hoping whomever I switch to will help me to get it. It sure would save time!
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yes my doctors office had to submit it a few times to get it covered
At first the insurance said it was for patients who were just starting treatment but my doctor straightened it ou
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thanks everyone
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I am so sorry - I'm new to the Breastcancer.org community, and only just now realized this is the Stage IV only forum! I will delete my post.
Please keep pushing for the Phesgo, insurance is generally required to cover it.
My insurance (a self-insured university plan administered by Cigna) refused the process a pre-auth for Phesgo, which cancelled my first chemo treatment. They signaled that they would deny it altogether, and I discovered it wasn't listed in their formulary. When I called Cigna, they gave me the runaround, and said they could not process any request for coverage, because it is an injectable given in an infusion center, and Cigna's "pharmaceutical" and "medical" sub-units both refused to be responsible.
I looked online and discovered some useful facts that may help others argue for coverage:
(1) Phesgo is the ONLY injectible trastuzumab/pertuzumab, there are no generics or biosimilars, and the only alternatives are slow IV drips which would add hours to our "chair time" in the infusion center.
(2) Phesgo is a non-controversial basic standard-of-care medication that is routinely approved in the US, Canadian, UK, and EU healthcare systems. This can easily be verified by a google search.
(3) There are court cases filed by patients who were denied Phesgo -- the court overruled the denial, and forced the insurance to cover it. The argument was that Phesgo is the only injectable option, and it is not defensible to force patients to spend extra hours in the infusion center, because it puts them at risk of Covid and other dangerous complications.
So last night, I asked a local BC support group for advice, and launched a multi-front battle with my hospital, our employer, and Cigna. I argued that Phesgo was a basic standard-of-care drug routinely approved by insurance companies, and that my health and life were being put at risk by forcing me to take an IV infusion which would add hours to my "chair time" at a busy infusion center during a pandemic, while on medicines that depress the immune system and are known to cause blood clots and pulmonary embolism.
My insurance company changed its mind and approved the Phesgo today. I don't know whether anything I did was effective, but I have a feeling being aggressive and using multiple channels may have helped.
It sounds like a lot, but other than gathering advice and looking things up online, it only took a couple hours. It may have been partly fueled by my pre-chemo day steroids (which I took before I was told chemo was cancelled). If it wasn't approved today, I would also have contacted Genentech (the manufacturer) because they have a program that assists with insurance appeals, a social worker at the hospital, and my local congressperson.
I hope you will keep trying to get coverage - maybe some of the above will be helpful. It is all based on advice from people who have already been through this before us!
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My team told me there is a nationwide Herceptin shortage and gave me some other drug, they said it was chemically the same as Herceptin. Maybe so, and this could just be "in my head" but I've had a headache every since.
Anyone else heard there was a Herceptin shortage?? Kind of scary to hear that.
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