HERCEPTIN and/or PERJETA Threads
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Shutter, glad for the good results. So sorry about your kitty. That's tough. Hope the test comes back not malignant. Niki, that's really good news for your mom. So glad she is responding well. Sueopp, I got nothing. No ideas. I'm sorry. Thinking about you though and let me know if you come up with anything. I have some neuropathy in my toes, it comes and goes though. I'm not sure if it's left over from Taxotere. I'm hoping it'll get better with time. I was wondering if anyone else has drainage in their ear after infusions? If so do you do anything for you ear? Usually it resolves all by itself but this past time it's not. I was wondering if anyone experiences this as well or if I'm just lucky. Thanks. Hope everyone is feeling well. XO
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Thanks, txmom, for your kind words. I got nothing either except the hurting. I plan to speak to the oncologist tomorrow - will probably require meds. (Rats! More meds). SUE
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I'm not on the boards enough lately...crazy busy schedule that will quiet down next Wed...as DH and I will spend 2 weeks being nannies to our grand dog, Addie. Son's family landed in Taiwan yesterday, & will go to Singapore, Bangkok & China for his business (and he took my 8 yr old Josie with him!) so, walks CA sunshine & nothing on my plate (unless I'm in a restaurant!)...except bc.org! I'm so happy for your news, Shutter...and look forward to your o...ectomy (?) taking care of any concern there! Wow...you are the most compassionate cat mom :-). I'm so sad for your kitties having to go through so much. But when you're that in-tune, I believe your instincts tell you what is right for tx. Our DD's Biggie had a bladder tumor & lived about 6 months on pain meds (they couldn't afford surgery) and finally told them it was time. Two yr old GD keeps asking where he is...but then says he's in the clouds. My heart's w/you.
SUE...I was at my wits end not feeling my toes. I finally asked for Gabapentin (suggested by PT way early in tx...when I had no neuropathy...for if it ever came). It worked, and I really had no ses. Going off perjeta helped too. I didn't want to be on another pill, but it cleared & im a happy camper. Acupuncture is starting to kick in w/good results...so thankful for your suggestion!!!
Off to Palm Sunday service w/fam..we'll miss our first Easter as a family for a long time. See ya'll next week. XOXO
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txmom, I have never had an issue with my ears at all...not sure what is gong on there!
Mltdd, your poor mouth! Chewing ice help me. I actually brought bigger icecubes because they lasted longer. I didn't get thrush in my mouth but by day four post taxotere I had a yeast infection down below, haha. I used one over the counter diflucan tab. I needed to repeat this every round after that. You can do it! This will be behind you in no time! I'm 10 weeks post taxotere after 8 rounds and feel almost like my old self.
Shutter thank goodness that your ovaries are behaving! You are ER PR - though so would you need to take them out? On a side note my original testing for ER PR was neg, even my liver mets, but my recent bilateral mastectomies pathology of the macromets to one lymphnode was slightly ER + 2/8 so I started tomoxifin...you can never be too careful...when did it mutate to ER - ?? or are there ER+ cells floating around too?
Sue I hope gabupentin helps if you suggest it to Med onc.
I am happy with my super cute new movie star boobs, likely won't change my outcome but at least my breast stay in place even without a bra! Needed at least some perk.
Hugs to all
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Hi ladies,
I'm writing to see if any of you have had this problem: We have discussed the problem of ITCHING on this treatment. My experience of itching comes and goes (mostly on my left shoulders, arms, hip - opposite side of my breast cancer, ironically). But I have recently started BREAKING OUT IN HIVES on my left forearm when someone wearing strong perfume sits next to me. This has happened twice. I smell the perfume, my skin gets itchy, then starts to turn red, then hives. It calms down when I move away from the perfume-wearing individual, but the itchiness comes and goes. The little bumps are now little sores from where I have scratched them.
Does anyone else have this? I think I may have exposed my left arm to some strong sun recently without sunscreen (I always wear sunscreen in Miami, but missed this one time/day) and wonder if the sun exposure is a contributing factor.
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Just checking in and am delighted to see your good news Shutterbug. Huge relief, no doubt. My estrogen levels were high and I was happy to have ovaries out having discussed benefits with my Oncologist. So sorry about your cat Annabelle fully understand your heartbreak. I have a Yorkshire terrier, Toto, who is part of the family (10 years), as a matter of fact sometimes he is the only one in the house who is happy to see!! He was diagnosed with diabetes in February 2014 and must be injected (insulin) twice a day. It is a huge commitment (timings on injections etc) but wouldn't be without him. Hopefully you will get good news regarding Annabelle. Scrunchthecat, not sure about the hives but always found calamine lotion good for rashes/sunburn as it helped with both healing and that incessant itch. Toto on Paddy's day.
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Judo - My goodness what a cutie pie! I just love terriers, especially ones with beards.
Yes, our house is quite the stress-zone right now with both of us working full time and one diabetic cat and one with a cone who refuses to eat. But they are worth every second (and dollar!).Scrunch - I haven't experienced the itching that others have mentioned except for on my hips (where my undies sit...TMI). I assumed I was getting to big for my britches, so to speak. I found moisturizing every day helps. Are you using a fragrance-free clothing detergent? I prefer Tide Free and Clear. I had the pimple-like bumps on Taxotere and a few still show up now and then. Doc gave me minocycline lotion and they clear right up, usually overnight.
bstein- I'm only slightly ER+/PR+. Only 5% of the cells in my cancer showed sensitivity to estrogen. I'm on tamoxifen currently.
txmom - my sinuses have always been trouble. I don't think I can blame it all on the h&p. When my ears start to get plugged I've started using Afrin (over the counter spray). I try not to use it too often, but when I can feel the pressure building I know it is time. I'm sure I should see an ENT doctor someday...but who has the time for another doctor?
Sue and Ronnie - wishing you both luck dealing with the neuropathy. I've been so lucky so far in that regard. I wonder if it matters that I have poor circulation in my hands in feet. I think maybe that keeps the drugs from hanging out in the extremities for too long.
Good news on the cat - It was mammary gland cancer, but the lymph notes came back negative and the vet says he got wide margins. We will probably do a chest x-ray after she heals and we have the option of doing the same surgery on the other side or just watching her closely. I talked to my Primary Care Physician today about how my cat also had "breast" cancer and she also felt it was suspicious that it happened to both of us. I'm going to bring it up to my onc at the next meeting. He will probably look at me like I'm crazy, but whatever!
Thanks for all the good wishes. Sending love and good thoughts right back!
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Shutter...such good news for Annabelle! I always think of those dogs that can sniff C...might save $ on diagnoses!!! Judo..Toto is the sweetest!!! Does he have ruby red slippers :-)
Tx...I don't have ear problems (other than AGE related...when I said it seemed I was talking louder, my kids said YES! Gotta have a hearing test), but I bet it's all related to the crazy sinus stuff h/p causes. I take a Claritin daily & it helps a ton! It's better off perjeta, but some things still get me going...walking into Macy's (fragrances & racks & racks of clothes!) & GS's class, where teacher has one of those plug-in saucy smellers...they should be outlawed!!! One little girl clears her throat all day. Teacher unplugs when I help on Thrs but still makes my nose drip.
No worries on neurop for me anymore...thank goodness. My sis, who's very heavy & developed lymphedema in her feet/legs after uterine C rads, said new shoes made her toes feel weird. I said neuropathy...been there, done that. Yep...dr confirmed. Sometimes I hate that I know so much...LOL!!! Off to my first walk in CA sunshine!!!!
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Hi to everyone and Happy Spring (assuming it has reached you, we are having a beautiful one here in Northern California). Just thought I'd make note here of reaching my 3 year cancer-versary, thanks to varying combinations of Herceptin, Perjeta and estrogen blockers. Feeling grateful-my side effects really ramped up in Year 3 but so far I have yet to experience any progression. Only 4 years to my goal of seeing both kids graduate high school-go Herceptin, go!
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Hi Scrunch -
I had the exact same experience that you had with the itchiness on my forearms after being onH&p only for about 6 months. The itching was so intense that I'd have open sores all over my arms from scratching so incessantly. My doctor prescribed several steroid creams to try and help and nothing worked. I went on a 7 day vacation and all of a sudden everything cleared up. I came back home and it started again. I quickly realized it was probably linked to the supplements I was taking since I didn't take them with me on my trip. I slowly introduced the supplements back one by one and found it was the mushroom supplement I was on that was causing the itching This entire time I've also had crazy low WBC count and nothing (even neulasta) was helping. After cutting the mushroom supplement out my WBC count came back up!
I was taking the mushrooms to try and boost my immune system and it was having the opposite effect. "The mushrooms were bad" as my onc says
. Anyway, perhaps it is something other than the H&P that could be causing the itching. Good luck figuring it out. I know how terrible it can be.0 -
Josalive...so glad you found out what was causing itching...and even more importantly, low wbc!!!! Interesting that when I asked my onc about drinking the turkey tail tea, involved in a bc study here in Seattle w/my center & Bastyr University (naturopathic school), he said not to do anything mushroom related. I thought it was related to disqualifying me from a future trial. Maybe it's because of what you've related. Thanks & I love this place if smart women sharing important data!!!
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CarlaK - Congrats on 3 progression-free years! I just love hearing of more milestones being met.
I'm reading "Her-2: the making of Herceptin, a revolutionary treatment for breast cancer" right now and I am fascinated by what it took to get the drug out of the lab and available to patients. I'm so thankful to the brave women who came before us, who volunteered to try something different and to all of the researchers who spent years of their lives developing and refining the drug and fighting for funding.
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Scrunch, that is so unusual. If you were truly allergic to perfum why would you only get a local reaction? Humm, have you tested your theory at home? It is hard sometimes to figure out cause and effect...Still it's rather bothersome! The back of my neck is so itchy I thought it was my necklace or maybe my wig (hair is still too short to brave it), I just keep scratching!
Shutter, I watched the movie, "Living Proof" years ago and have since watched it again with renewed interest. I'm sure it must have been based on that book. I always say, "Just call me Ginger" because she had liver mets and is still alive. She was in the phase three trial starting Herceptin weekly in Aug 1995 and now continues every three weeks. She apparently spoke in Nov 2015. She has three tiny marks in her liver that have never changed (scar tissue) she will continue taking herceptin because she is afraid her cancer will come back. I hope to be in my 70's like her some day! She is a super responder 20+ years now. It can be done
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Mikarae, those tumor markers will come down! May your dose of H&P "lock on" and your T cells obliterate ALL those tumor cells!
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bstein - Funny that you should mention Ginger Empey, she just joined one of the MBC Facebook groups that I belong to. She is a freaking rock star and I hope we can all be like her one day!
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I have tried to join that group on Facebook but must have done something wrong! I will try again...I think it is closed that's why...
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I've tried, too, but haven't gotten in.
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Definitely try again! I think sometimes the admins get busy or distracted by their own health issues and misplace requests. The group Ginger just joined is called "Thriving with advanced metastatic stage 4 breast cancer".
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Hope you do not mind us asking, but what is it about the FB groups that you like, and how are they fulfilling something additional/different/better/ than the discussion boards here?
We really appreciate your insights!
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Hello Mods, I like the FB group because when you ask a question, the answers to your question are right under the question. No scrolling through hoping somebody notice and commented or worrying if I missed a comment. I also like the notification so I know to check. Hope I explained this well.
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Hi everyone -
Two updates: First, back in January I posted about a HER2+ vaccine trial I had found. (https://community.breastcancer.org/forum/8/topics/...) The problem was that they wanted me to discontinue H&P to take part in the study. Well, I heard back from the NIH today - they received all of my materials and confirmed that I was HER2+++. HOWEVER, they said that since I was still having a good response to H&P, I should wait and call them when/if my tumor markers go up, or we see progression on a scan. They said they would let me in immediately. So hoooray, I guess, I get an extra line of treatment after H&P and before Kadcyla. Here's hoping I never have to use it!
Second: I was having a serious local reaction to strong perfumes (I was breaking out in hives on my left forearm). After digging around a bit (thanks for the heads up BStein), I found out that Tumeric can cause this in some individuals. I did not take Tumeric supplements but I added a healthy sprinkling of Tumeric and black pepper on almost everything I ate since about August. Recently I had upped my Tumeric game when I found that Publix sells organic Tumeric. Long story short: I have not had any Tumeric for about 10 days, and my allergic reactions seem to be going away.
BlueFrog and Shutterbug - thanks for the heads up about Thriving with Advanced Metastatic Stage 4 Breast Cancer. I just asked to join. Mods - it would be fantastico if maybe some of the popular threads on BCO, particularly in Stage 4, had some links to FB. Because FB requires that you use your real name (and is pretty successful in keeping things this way), the community is a little closer because it's easy to share photos, etc., from your personal newsfeed.
Hope to see some of you in Philly next week!
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This is really helpful feedback, and we sincerely appreciate it. We aren't keen on linking back to Facebook, but will discuss. We hope to create something here that uses some of the favorite features that you appreciate on FB. Make sense?
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Scrunch - so glad you seem to be getting the reaction sorted out. Better the tumeric than the H or the P!
Mods - I personally feel like I develop a closer relationship with my fellow BCO members, maybe because there are fewer of them. I also like that I can join the topics that interest me the most. However, the large number of people in the Facebook groups means someone is likely to post a study or new clinical trial that I wouldn't have heard about otherwise. On the other hand, I sometimes feel having so much "cancer" on my Facebook feed can be overwhelming, especially on days when I'm trying to focus on my non-cancer life.
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Scrunch: I will be at the Philly conference. Hope to meet then!
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I'm with you shutter! Find this platform warmer, closer. I was able to join one of the FB groups today so I guess it's too early to dismiss it!
Scrunch, I'm so happy that the trial will be an option in the future! I was hoping, secretly, that you wouldn't join and have to stop H&P! You will be NED forever anyways! Vaccine trial in your repitor if needed
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Hello Everyone and Happy Friday!
I was diagnosed just before Christmas and had my first PET Scan the first week of January. I had innumerable mets to lungs, multiple liver lesions, bone mets in the left pelvis and one vertebrae, and in one of my lymph nodes by my thyroid. Yeah. I lit up like a Christmas tree in that scan. I went on a treatment plan which included 12 weekly Taxol infusions, Herceptin and Perjeta every three weeks, and an Xgeva shot once every four weeks. I am delighted to report some good news about the results of these drugs!
I had my first PET Scan this week to assess the results of those first 12 weeks of treatment, and this scan looked a lot more like just a few night lights, and not a Christmas tree!
1. Most of the lung tumors have resolved, except for about three, but they are half the size they were when I started and are way less active with the highest having an SUV uptake of only 2.7 (it started at 15.66)
2. Lymph node by the thyroid has petty much cleared up.
3. Most of the liver lesions are resolved except for two larger lesions. However, both are significantly reduced in size, and only one still shows high activity, but that has gone down a lot too.4. Bone lesions are almost gone.
I'm not out of the woods yet, but the NED mountain top is getting closer!
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DGhoff, I'm so happy for you! Just let those drugs continue to do their job! You will be NED very soon!
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DGHoff: thanks for sharing your amazing results. It's such a rewarding feeling when treatment is working and all those side effects were worth it.
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DGHoff, wonderful news
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DGHoff, fantastic news! You must be celebrating this weekend. Keep moving in that NED direction.
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