HERCEPTIN and/or PERJETA Threads
Comments
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I used the NatraCure ice socks you can buy on Amazon (at least in the US, but you can buy directly from NatraCure too) and an extra set of ice packs for them. They are the ones most people seem to use. I also got a Packit freezable lunch box for transporting them that worked really well. My chemo center would put everything in the freezer for me as soon as I arrived and bring it out when we were ready to start my taxol. Perjeta is always first, and I'm pretty sure I had the Herceptin before the Taxol too, plus I had labs and a consult before we even started my infusions, so I needed to make sure everything stayed well frozen for several hours.
I didn't use gloves though, so have no recommendation on them. Maybe someone in the Taxol thread will.
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Just had my 65 treatment of H&P. Happy and grateful to report my CT scan says, “No evidence of metastatic disease in the chest, abdomen or pelvis.” I do not have scanning of my bones because it was only on my liver at diagnosis. I did have onescreening brain MRI a couple of years ago which was normal too. Next CT in 6 months.
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happy happy day for me! Last taxol treatment done today.
HP coming up in a week. Along with tamoxifen (we think).
Happy Easter and stability to all.
Cathy
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DGHoff: I have asked other posters about Taxol H&P etc and neuropathy. Did you ice while receiving treatment? Did it help? I purchased those gel gloves and socks in advance of my first Taxol HP infusion that is coming up. I want to do everything possilble to ward off or reduce neuropathy.
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Congratulation bstein I am just a couple of treatments ahead of you, I had my 71st infusion to day. Happy to report that I too am stable having had results of my six monthly bone and CT scans two weeks ago. Onwards and Up to all on H&P.
Happy Easter to all.
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hi ladies for those that are triple positive. What are you taking for PR/ER -
And what are the side Effects
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Hi Hopefulgirl,
1mg Anastrozole daily (arimidex/bluefish, I have tried many brands). I was originally on a tamoxifen but in the year I was diagnosed metastatic I had my ovaries removed and was put on an Anastrozole.
Severe muscle cramping and joint discomfort are the two main side effects for me. Over time the joint discomfort has eased off but I still get a lot of muscle cramping. I would recommend a dioralyte dissolved in a pint of water and sipped over an hour (twice a week) to keep body hydrated. Like all recommendations please check with your health care provider first.
Hope this is of some use.
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MommyErin: recently diagnosed Stage IV, liver mets. Just starting chemo (Taxol, Herceptin/Perjeta). I'll be over the moon for NEAD in two years. Please cheer me on. Right now, I am floundering, depressed and scared.
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Elderberry,
I was diagnosed with liver Mets almost 11 years ago. I have been NEAD the last 5 years. I am also on herceptin and perjeta. I have had good quality of life. I am cheering you on!!
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Hi Elderberry! I'll cheer you on too. Stage IV at diagnoses with liver mets. Many of them! I completed only three taxotere treatments before having to stop and continued with herceptin. Liver and breast all resolved. I'm NED for the last two years. Yearly scans and herceptin every three weeks. You got this, it doesn't have you
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Dear LoriCA, BellaTassie, dear all, just a short update: my wife seems to be reacting to Taxotere well, after just 2 treatments almost all external symptoms on her breast are gone. Let's hope we continue this way... I also talked to our immunologist who administers DC/CIK vaccine, and he said that ,,maybe red area around areola was not IBC, maybe it was immune reaction to the relapse and accumulation of leukocytes in that area". What the hell? Of course, I liked this idea, as there were some other strange things and this ,,theory" explained them. Like doctors in the MDT, and our new doctor were surprised to see how the redness had these clear boundaries, as if it was painted with red marker, sort of ,,oh, we have never seen this"... And they were pushing us against the wall to confess what creams have we applied to the breast to get that "burn", although we did not use anything (I think they did not believe us till the end). So strange all of this...
Saulius
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Saulius great news that she is seeing a good response so soon. I hope it continues to work well for her. It must be frustrating that they don't even know for sure what caused the symptoms on her breast. Clear margins would likely indicate something else other than IBC, mine and all of the photos I've seen always have more of a mottled look, but IBC sometimes presents in strange ways, so who knows? If they verified with biopsy that there's cancer and a reason to be on chemo, and she's responding well to chemo, I guess it's all good. I had a wicked reaction to the calendula cream I was told to use during radiation, turns out I'm allergic to it. That was a bad combination with IBC and made it incredibly difficult to see if I was having any kind of response to rads or if the IBC all of a sudden got drastically worse until I figured out what was causing it. Since IBC symptoms can be caused by so many other things, that's what makes it so difficult to diagnose (without biopsy). I hope your wife continues to respond well to her treatment.
2.5 months (70 Gray) of daily radiation has my skin cleared up and did shrink (but not eliminate) the tumor at my brachial nerves. Now waiting on enough radiation to leave my body before I can have scans, and then we'll decide if I stay on H&P alone, add a different chemo to it, or switch to something altogether different.
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Hawkeye, Reneeswan: Thank you for your gift of optimism. I feel adrift in a leaky rowboat and your posts are like an approaching ship with the lights on.
JFL - was it you getting a new port?. I have one but I am small and have always been thin so there is not much padding over it. It does stick out a bit, but not by much and clothing hides it. Did it go well?
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Hawkeye: I have no faith in my current oncologist nor the facility to which she is attached. Treatment is delayed, delayed, delayed. No date set - WTF? I worry about the long waits. I am seeing a new MO on Monday, who comes highly recommended by people I trust and attached elsewhere. I worry about being too late. How long were those mets just percolating away in the first place? I am also HER2+, liver mets, 5 cm primary tumour. Recently,iIt is starting to ache. I hope that chemo will start to shrink it and relieve the pressure and slow progression.
So scared, worried............................
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Dear LoriCA, yes IBC is a crazy thing... They have to find ways to identify it, some markers or gene expressions. Anyways, I fell for the "immune-response" explanation because, you know, these immune things these days are so appealing, and sometimes we are satisfied when we hear what we want to hear:) For your 2.5 months of radiation at that dose, simply wow, what else can I say. But what amazes me is how much human determination can accomplish and you are a beautiful (and exceptional) example of that. One question is, if you don't mind, what scans will you have and how will they measure the response, especially on the skin?
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Dear Elderberry, I am sorry you feel so scared. Anyone would be. You have a right to demand dates, treatment plan, and treatment asap, even today, not tomorrow. Do you have anyone to help you, to advocate for you? Sometimes being together with someone, and not alone, puts more pressure on decision making. I always go with my wife and almost never speak - she is doing it herself, but if something, I step in (politely of course). Panicking does not help but fighting for yourself is a must, and this situation requires a bit of impertinence (don't know if I am using this word correctly). Never forget that you are strong, much stronger than you think. We all are with you,
Saulius
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BSandra: I have always taken someone with me. In case my mind goes blank and I don't hear. I have both my husband and a dear friend who is the BEST advocate one could ever hope for. Being frozen in a form of stasis is unbearable. At least I am moving forward. Your wife is fortunate to have you there through such trying times. I am not passive when it comes to such important things but I was hitting a wall. No response from the onocologist and no point in yelling at the Booking Clerk who makes appointments on the direction of higher ups.
My husband is finding this all very difficult. How do you cope?
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Saulius we're doing a breast MRI in a couple weeks, and then a PET/CT a few weeks after that (have to wait for enough radiation to leave my body). Those will be my baselines for my next round of treatment. I think it's hard for them to gauge skin infiltration via scans, a previous MRI (last year) showed nothing concerning while visually I could see that it was spreading, so I'm not a fan of MRIs for IBC. I've read that the best they can show is the skin thickening that is common with IBC, but now that's affected by the scarring from mets. But the primary purpose of the MRI is to measure the tumor that's tangled in my brachial nerves, although I'm concerned that it won't entirely show because of the location (intersection of chest above my breast and under my arm). The PET/CT will be more important because I have mets in multiple locations, and new ones also developed in distant nodes while I was on just Herceptin and Perjeta, so we need to see how all of it is doing now. Some of my mets respond to H&P, and others keep popping up. I'm keeping my fingers crossed that I won't have any surprises. Sometimes it feels like playing whack-a-mole. I'm still on H&P but otherwise in a holding pattern for the next month or so.
We can tell that radiation cleared up my skin because it looks so good. I'm very fair skinned and surprisingly I had very little damage from radiation. They had to use a bolus to intensify the reaction because there was little response the first couple weeks. I'm probably the first person whose skin looks better after radiation! My RO described it as going from the vascular red of cancer to a gentle pink of radiation, and the spots with mets turned white (scarring). It's almost completely faded now, you would never know I had that much radiation just a couple weeks ago.
Most of us with IBC hang out on the IBC Lounge thread, even those of us who are Stage IV. You are welcome to join the conversation there. We even have a man who was diagnosed with IBC who is a regular on that thread, so you'd have some male company haha!
Lori
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Elderberry, what do you mean when you say treatment is delayed? Have you started Herceptin yet? Any chemo? It is very important to have faith in your oncologist, for sure! Good for you in finding a doc/center you are comfortable with. Long ago at beginning of treatment for me in Mar 2014 my doc told me "this isn't a sprint....we are in this for the long haul, it's a marathon." I think back to those words often. I stopped hard chemo really fast and had perjeta for only a year. Dropped perjeta because of side effects and put my faith in herceptin alone. After the very first herceptin treatment I noticed my liver pain was gone. Within 3 months the breast tumor had softened and was barely noticeable. I've been NEAD for 2 years. I still have herceptin every 3 weeks and scans yearly. All this to say, I'm grateful for being an excellent responder to this treatment, and even though cancer is still very much in my thinking, I've noticed that it defines me less and less. Just like you found this online community of your people, go find the doctor and center that you feel most comfortable with for this marathon. Be picky, be choosy. You can do it
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Hawkeye: I was supposed to start April 1 but my MO cancelled that because I had not had an echocardiogram done yet. I was booked but the hospital where it was to be done neglected to tell me I had an appointment then wrote me down as a "no show" The echo has been done now. Then I had a PET scan that showed I was Stage IV with liver mets ---- Then it was get a port installed. Did that on April 8. since then I have been on bleeping wait list for chemo with no ball park date. "We'll call you when we have a spot" When is that? When Hell freezes over? UNBELIEVABLE!
I am hoping that the new MO will have had a week to review my pathology reports and will already have a treatment plan in place to discuss with him when I see him next week. Thanks for cheering me on. The support on this site is wonderful.
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I was diagnosed with IBC on the right hand side in March of 2015 and it was June by the time I had all my surgery, mastectomy done. I started chemo in June of 2015 probably already stage IV since my mets were in my head in 2016.
It does take a LONG time to get a plan together, I know they have a tumour board here in the London Regional Cancer Clinic to discuss plans going forward for people.
Elderberry, I certainly can empathize with what you are going through with a new diagnoses and wanting to get the show on the road. Hopefully things speed up very sooon.
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Dear Lori: thanks for such extraordinary comment. I too got an impression that doctors don't know exactly how to check these skin things that they call "infiltration". In the end we do not even have a clear (and no official!) answer if it is IBC:/ We'll see what they propose, as the scan time is coming (usually they do it after 3-4 chemos here). I'll write after I have news. And oh, I am on the IBC thread, just did not write there yet.
Elderberry: so great your husband or friend is with you. In the beginning I had a feeling (while going to every door with her except for scans) that doctors felt uncomfortable, like "what is he doing here", as just a few women come with company, but now they are okay with that, some are even happy to answer my "sincerely stupid" questions. How do I cope? Well, after diagnosis 2 years ago it was very difficult - it was not physical but mental. With 2 year old boy in my hands. There were days when even looking into his eyes was like stabbing a knife to my stomach, you know, these thoughts that "I failed my wife, I failed our son"... We were pretty alone, as we did not get much help from the family. Sandra's parents completely collapsed. But we got support from friends. Hiding and crying for me was daily, but then I had to go out and smile, encourage, fight for her, work further full time for my own little company as I felt huge responsibility for those who work with me. I am not weak but take everything to heart, so after not sleeping and eating for 2 months, I understood I had to do something and went to get antidepressants and sleeping pills prescribed. Still on them. I also went to see a psychologist and understood that vocalizing my fears helps me a lot. After progression 3 months ago, I had this breakdown again but now back to "normal". But you know what? I am blessed to be with a woman like her, she is me and I am her (I know that does sound strange in XXI century). And you know what else? I will never stop believing that we can, you can, all others can heal (what is a cure in the end???). One step at a time. Be thorough. Look for signs and clues (physical and mental). Get help and most importantly take help. Don't let setbacks discourage you. Advocate for yourself. Trust doctors but also listen to your gut. No false hopes but HOPE MUST BE THERE. As for your treatment, I believe if you are strongly HER2 positive, any-taxane+HP protocol can heal you very quickly, so you have to go for it asap because smaller tumor load is also very important and waiting does not help here. I wish you all the best from the bottom of my heart,
Saulius
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BSandra, Mara51506 Thank you both. I am trying to stay encouraged and the change of MO/Facility will expedite things more speedily. I do understand that it takes time to line things up, but a call from my soon to be ex-oncologist to see how I was doing while I waited things out would have been a decent thing to do. I felt abandoned. I don't know about my tumour load but I have seen posts from those with "extensive liver mets" who also did well. I was feeling just fine,healthy and active until late February when this lump in my breast seemed to explode out of nowhere. I call it "Nigel" and I want Nigel gone!
BSandra, my husband is very sensitive and he is having trouble coping. We are beyond soul mates. No children. Just we two. And our cat Aelfric who brings us joy and exasperation.
Mara51506: BCCA also has a board/panel that convenes to discuss plans but I feel like I am low on the list. "Save the Early Stagers First" triage.
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Mara I'm surprised that IBC is handled so differently in Canada with surgery first. Here in the US IBC is always treated with chemo first to stop it from spreading and hopefully shrink it before surgery. There is a reluctance to cut into cancerous skin. I started chemo the day after my staging was confirmed.
Elderberry you're in a different health care system so I don't know anything about how things work in Canada. What I've seen from talking with friends here is that if you have a low grade indolent cancer there isn't the same sense of urgency that they have with a high grade high proliferation cancer. Wondering if maybe that's why they aren't rushing to treat you? Do you know your Grade and Ki67? Not that it would do anything to help your peace of mind, but it's the only (somewhat reasonable) explanation I can think of for why things would take so long. I hope you get started on treatment soon and can start moving forward. As Saulius said, HER2+ usually responds very well to Herceptin plus a taxane.
Saulius I really appreciate hearing from the husband's point of view. I know that my husband tries to stay strong for me, but I can see the stress on his face when I'm going through a rough patch and he's not good at talking about his concerns (like most men of a certain age, I suppose). You are a wonderful husband to Sandra and I'm glad that she has you, and I'm glad that you participate here.
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LoriCa: as far as I know it is considered fairly aggressive. Do not know the Grade. I just think BC Cancer Agency is just a mess. I am hoping that the new MO and the new facility will be more pro-active.
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Lori, I hear you. I am aware of how it is usually treated with chemo first then surgery. I was dx with DCIS first so surgery and implant were supposed to be all I was having. Closer to the surgery date, the breast showed signs of IBC BUT surgery went ahead as planned . IBC was officially dx post surgery. Not sure why it was done this way but glad it was. I am NED now and brain mets are still shrinking. I think I am just lucky to have had a good response to treatment.
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Hawkeye, BSandra -- I start today with chemo. Less than week ago I wrote to the Provincial Health Services Authority and stated my complaints. They wrote back asking the usual (name, DOB etc) and what outcome I would like. I said "Why the delays? I want treatment NOW". I got a call from BCCA yesterday saying "Tomorrow" Whether I rattled the right cage, or it was a coincidence --------
Fri and Sat -- is this a form of "load dosing"? then the usual three weeks etc.
I still plan to go ahead with the meeting with the new MO on Monday. I may be in rough shape but I'm going!!
You lovely people give me courage!!
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Mara, I should've looked at your signature line - it's crazy that you would go from what they thought was DCIS Stage 0 to Stage IV in just over a year. I bet that had your head swimming. I'm glad you are responding so well to treatment and that you are currently NED.
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Yes it certainly was. Going to Stage 3 terrified me and then of course brain met.
My MO said I was most likely Stage 4 since my brain was affected first and I have been NED from the neck down after my mastectomy, chemo since 2015. I am a unicorn and still fairly rare to be brain only mets.
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elderberry!!!
This is fantastic news! And I'm so glad you have plans to meet the new doc! You'll have to update us on the meeting. I've noticed in myself a certain outlook on things since diagnosis and one of them is rattling anything I don't agree with. Keep rattling the cage. Oh, and another thing, I noticed that you and I were diagnosed practically on the same day/month, just 5 years apart. Best of luck on your first treatment. Herceptin is an amazing drug
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