TRIPLE POSITIVE GROUP
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sorry for that, he suggested BMX versus goal of lumpectomy since we stopped chemo early. Good news my path report came back 0 Cancer in any tissue (both breasts) 0 cancer sentinel and 4 other lymph nodes taken fro Cancer side as a precaution. My recovery from BMX with Direct implants has been miraculous! I returned to work (after 5-6 months away) after two weeks! Half days first week but full time, on my feet, taking flights of stairs hourly for three weeks now and I'm feeling great! My hair is growing back and I have fuller eyebrows and eyelashes returning!!!! Yay
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hi cupcake! Welcome to the board! We hope you will find this a safe space to share your fears and ask questions. I did not have perjeta, but did have herceptin for a year. I did ok as long as my infusions were 90 minutes. When they tried to do it in 30 I hurt!
For those of you having surgery best of luck. These decisions are so hard. I have always said that I feel like I keep having to make "the least crummy decision".
I missed a call from my MO this week. No one can figure out my labs and if I am menopausal or not. I'm starting to get super frustrated. But I guess the answer is...we simply dont know...but my labs make no sense. Sigh...
Juli welcome back to the board!
And just a gentle reminder to everyone here...you can block posts you're not interested in reading...
Gearing up for my daughters 6th birthday this week. She was getting ready to celebrate her 3rd birthday when I was diagnosed. I made them schedule my lumpectomy for after the party. My how time flies...
Love to all!
Tres
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Juli24, welcome back. Please stick around.
On herceptin, it is what it is. When you are her2 positive and meet the guidelines, that's what you get. There are no alternatives, only add-ons, Perjeta and later Nerlynx. Pick your poison. Her2 positive is serious stuff.
I received 30 pages of warnings and constant counseling and monitoring when I was doing TCHP, then H only. I'm getting the same monitoring and warnings about nerlynx.
When there are no alternatives, we just have to jump into the deep end of the pool and hope for the best. That is our lot.
I have one parting thought. So glad we are here and can have a discussion about Herceptin. Approved in 1998 for MBC and 2006 for early BC, there are many who did not have the treatment and they are no longer here. Being triple positive is serious stuff. We must steel ourselves and hope for the best. That is our lot.
Cupcake, sounds like you had a rough road but a determined oncologist who would not give up on you. This is a good thing. I hope round 2 will be more tolerable and think your doctor is going to do their level best to monitor based on your descriptions. Hugs. Now back on the field and we'll be here to support you.
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Shelabela - thanks for the Sunday funny and reminding us to enjoy each day fully in as much positivity as possible!
Tresjoli - enjoy the week planning for your daughter's birthday! It is so much fun to be around little children; my grandkids have always been the bright spot in my life no matter that I am going through! I hope your medical team can figure out your labs soon!
1cupcake - great news on your pathology and recovery after all you went through. I'm happy to hear things are going well for you!
In regards to the stats discussion - I do not waste my time worrying or researching stats but rather rely on my faith to see me through whatever may be in my future. I am a numbers person too but at some point I decided to let it all go and focus on TODAY and how great I feel (side effects and all). We have to get through this cancer journey in our own way and I wish each of you peace and serenity every day!
Spring has finally arrived in WI so I am enjoying this warm and sunshine filled day with my kids and grandkids and then going for a 3 mile walk. I will be getting lots of vitamin D this week so my immune system will be very happy.
Have a wonderful day everyone!
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Poseygirl - I have those shooting pains too in my recon breast and I am 1 year out from surgery. I've been getting sharp stabbing pains in my joints lately too, mostly at night. Ankles, elbows, knees....the pain lasts for only a few minutes but they are very sharp. I've been dismissing it as another side effect from the AI but wondering if anyone else has them?
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deni1661, at night I shake my legs like crazy. It started with the AI. My pain is early in the morning and after long periods of immobility. No doubt the AI's have a host of miserable side effects. I might suggest mentioning this to your MO. Hope that shoulder is getting better.
Anyone heard from KimCee?
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I'm with you, deni. Research provides odds but not certainties. I understand that we would prefer certainties in life and that research can help us gain some control over the cancer evil.
But, I'm a great believer in finding "the serenity to accept the things I cannot change," as the serenity prayer puts it. I can do my best to take my meds and make lifestyle changes, but I accept wherever my cancer journey takes me. It is what it is. All I can really control is my response to it.
deni, I'm glad to hear that Spring has finally arrived! We have had some lovely weather also. Too bad I have 18 more papers to grade this weekend!
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Shelabela, Thanks for the smile for today.
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shelabela - I have a former colleague who is a histopathologist for organ transplant, and a BRCA1+ TN breast cancer survivor. She has been through full reconstruction after BMX with additional fat grafting, as have I. A couple of times, lol! I have fat grafted five times. Since we have transfusion services backgrounds as well and are familiar with blood donation and compatability testing, we actually had the conversation about harvesting fat from donors like blood currently is, refining the product, and storing it for grafting. There are actually no real roadblocks to doing this - it is a matter of setting up the infrastructure and testing process - but can you imagine how awesome that would be? I think we would have NO problem recruiting donors! I actually had a convo about doing this with my first plastic surgeon and his eyes lit up.
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Vicky. As always, your post hit the mark. You make me laugh when I need a good laugh, helped me to see things from a different prospective when I couldn't see the trees for the woods. Encouragement when you could sense that I needed a lift.
Everyone, I wish for one moment we could meet and share a hug and a smile. I'd love to hear your unique laugh. I can bring the hand sanitizer because I am a bit of a germaphobe . I could also bring some really soft tissues because I am a bit of a happy crier and to be honest a bucket of tears over stupid things too. While I'm thinking of it maybe I need to bring a DVD of that song ' HAPPY' where everyone is dancing around in their crazy own way. Hmmm some cheap Boones Farm Strawberry Hill Wine might do to loosen up some of those who are uptight and can't loosen up. Boones Farm you say? That's for kids! Yes, I do remember being 15 and passing around that bottle with friends annnnd thinking we were invincible.... yep I need a box of those tissues now...make it two.
Here's to sunshine and shade trees, cool breezes, wind chimes and friends.
Melanie
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I recently listened to a Her2 podcast from Living Beyond Breast Cancer done in August 2016. One of the individuals who wrote in a question, had been on Herceptin for almost 20 years. I found the idea of almost twenty years of taking Herceptin to be terrifying, hopeful and humbling.
My own personal experience was that Herceptin was a more tolerable experience for me than chemo was. Off the top of my head, I can think of 14 side effects that were eliminated or showed immediate improvement after I was done with chemo. (It's still hard for me to believe a person can have explosive diarrhea AND constipation in the same infusion cycle, but I somehow managed it – I suppose no one wants to hear about bleeding hemorrhoids, right?)
So, for me, personally, any issues I had with Herceptin were minor compared to my experience with Chemo.
This does not negate anyone else's experience. This is my own personal truth. I am grateful every day that I managed to avoid getting Triple Positive cancer until Herceptin was available for early stage Breast Cancer patients. I am also grateful to each of you, who remind me that this journey is not taken alone.
Gentle hugs to all.
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Hi, just checking in. 1cupcake, what an incredible story. So glad it is working out. Today was the first time wearing my wig and church friends were delighted to see me and the new hair. I am enjoying feeling good nowand hope to get away this week and attend a wedding next weekend. Then prepare for TCH 3 which will put me at the half way point! I am closely following the Herceptin discusssion and hope it goes smoothly. But, I am taking all of this one small step at a time. Thanks for being here, all of you.
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TCHP was pretty bad, I finished 6 cycles then went on to Herceptin only 3 cycles. Those 3 cycles of Herceptin was soooo good, then I was offered Perjeta again for the rest of the year with the Herceptin, not as bad as TCHP but those three cycles of just Herceptin was a tease, the H&P for early stage BC was offered to me and I accepted but boy the fatigue! Still I am happy there are more options. Maybe neratinib next ugh!
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Elaine, I hope you are now done with those 18 papers and were able top get out and enjoy some of the day!
moody, it sure would be nice to meet and share a hug! You all are my lifeline - I would not have gotten through without each of you!
Jstarling - so happy to hear you are in a good place. Half way - woo, hoo! That is something to celebrate ;-)
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Thank you, Special, coachcvicky, Suburbs and others.
My own personal experience is that TCHP chemo was tough. I did not work for the entire 5 months I was receiving it.
I am now 6 weeks post final chemo, and have had my first 2 Herceptin/Perjeta treatments. My side effects from the latter have been minimal so far. And although I'm not thrilled that I have to go in for echocardiograms every 3 months and have 7 more months of infusions, I have said more than once how grateful I am that Herceptin & Perjeta exist and are available to me.
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Hello all, new to the thread! My diagnosis and treatment has been a rollercoaster. I mean, I guess it always is, but...
I was diagnosed originally in December with ER/PR+, HER2- IDC. My HER2 IHC test was a 1+. I was put on Zoladex and anastrozole, and chose to enroll in a clinical study testing Ibrance for women with stage 2/3 ER+/PR+/HER2- breast cancer. For the study, I had to have additional biopsies to test my Ki67 after two weeks of anastrozole, then again after two weeks of anastrozole + Ibrance. My Ki67 tested at >20% without the Ibrance and 10.4% with it. Cutoff to stay in the Ibrance study was 10% so I was kicked off the study which sucked at the time. But for whatever reason, the pathologist who looked at my second Ki67 biopsy redid all the diagnostics and this time my HER2 IHC test came back a 2+, and a sample was sent for FISH testing. In the meantime, the second biopsy left me so bruised that when I had my next monthly exam 2 weeks later, the NP measured my tumor (which they do with an extremely scientific method of feeling it and using a tape measure) and her measurement went up, so she sent me for a mammogram to see if the tumor was really growing, and scheduled me for surgery consults, the thought being I'd just go into surgery if the tumor was still growing on the Ibrance. Mammo showed the tumor had shrunk from 3.3cm to 2.8cm, which doesn't sound like much but if you assume a sphere and do the math, that is -28% in volume. So my doctor got my insurance company to agree to pay for me to continue on Ibrance since I was showing a response to the drug. It took almost a month (don't know why), but my FISH results came back and I was HER2+. So I started TCHP on 3/28 and have had two infusions so far. However, I did find it interesting that my tumor was responding to the Ibrance, and I thought all of you might find it interesting as well. Overall, I found both the AI and the Ibrance to be very tolerable, especially when you compare it to TCHP.
I was not thrilled to have to go on chemo, and even less thrilled to be on a regimen that could cause heart failure. I'm an active person and I think if I get the point where I can't go for a trail run, I'll just give up and die. When I asked my onc if the heart failure was reversible with herceptin, he said "usually". But in the end I felt like my chances without herceptin were dismal, and last I checked dying from cancer is also irreversible. Sometimes life only gives you crappy choices to choose from and this is one of those times. Hopefully I can catch any drop in LVEF early with the running and if that does happen I'll pull the plug on the herceptin.
Still working full time too, though it's really hard to concentrate with all this going on.
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Hi all!!!
Shela, your place of work sounds like Cheers (are you too young to remember the show?)...hilarious. Lmao.
Thanks, suburbs and Deni (and sorry if I missed anyone!!) re: your reply about shooting breast pain. I had it for a day and now it's calmed down. I have a meeting with my MO in a few weeks and can ask there.
Suburbs, just curious. I've read on this thread a few times now that TP is an especially serious type of BC..forgive me if I'm wrong, but aren't all subtypes pretty serious if they are grade 2 or 3? And even moreso if triple negative and her2 positive only? I see it as hugely serious, but don't think we are necessarily a nastier breed given the presence of Herceptin and other targeted treatments? This in comparison to the other aggressive subtypes, I mean...
Re: Herceptin, I will mention a couple of side effects I had in case any of you run into them and are wondering...I had little spontaneous itchy red spots come up. I also had nose stuffiness and blood crusting (nose) and some localized back pain. I mention this so that any other person googling can land on this
Hap, I'm so sorry this is all going on and you feel confronted. I see where the communication gap is happening, but honestly don't know how to help clarify what I'm observing. I'll try, but will likely fall short: I think you are perceiving that people here don't want to know real facts that might be scary or that they eschew lifestyle and diet choices that could help with reducing risk. And then, feeling that, you would of course feel frustrated, thinking that only one strand of thinking is welcome here. I see completely why you'd feel this way based on your perception...However, what I think is really going on is something slightly different. I think that some people are reading your commentary as very ominous, or depressing, like nothing we do conventionally matters as it will likely kill many or most of us more than the cancer itself. I believe that everyone here does actually care about risks of treatment and does care about what we can do to better our odds. I personally care a lot and see that in others here. It's so difficult to describe, but it's not in the fact giving, but in the op-ed that goes with, leaving this overriding doom feeling. We all know Herceptin is serious business, but many of us feel we have no choice but to pursue it if we want to see next Christmas. I personally had zero choice and was handed a list of risks upfront. And you just want to build awareness of how scary this treatment can be. That is very kind and caring! But if those risks could be shared without blanket statements that induce further fear than is already present (and comments which may not completely jive with stats), that would be ideal. Saying something like “many women are dying from cardiac complications from Herceptin" is very frightening and should be given alongside the facts. We do know people are suffering serious effects; no one here would or should ever diminish your very real experience, nor anyone else's. We all have a right to share our own experiences to educate, get support or advice, etc. But In pursuing treatment to save our lives, we jumped into the murky depths. We prayed we’d be ok and held our breath for every echocardiogram (literally lol). Desperation does that to you - difficult choices when the menu of options is scary.
It just all comes down to the delivery, not the content. I am absolutely NOT trying to come down on you. I see your intentions and hate to see this resurface again and again. I don't believe your perceptions of what others care about here are accurate, and I hate seeing you feel ostracized at all. So I'm hoping to maybe help bridge the communication disconnect so that you can continue to share your great insights and compassion here. You are a lovely person.
By the way, Hap...have you ever been tested for Lynch Syndrome? Probably unlikely, but people with Lynch are more susceptible to various cancers. But usually colon.
Moody - love the picture you painted. Windchimes!!
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hi all,
i also have shooting pains in my reconstructed boobs. disappeared for a while and now they are back.. phantom pain perhaps?
i,too do not think much about recurrence.. i rely on my faith and if it comes,it is what it is. i enjoy and appreciate each day that comes..maybe being busy with the twins and working on the frozen shoulder keeps me really busy and by the end of the day i am just too tired to think about it?..went to Dave and Buster’s yesterday with the twins and watched a movie the other day and ate at Cheesecake Factory.. man,their pan seared salmon was yummy!!! and i didntcare if it was farmed or not. lol..happy spring everyone!!!!
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Kae, good to hear your doing ok. Hope that shoulder gets better soon
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HapB, the Healthline article definitely resonates with me. I blog on Caring Bridge, and I discussed the “battle” metaphor a bit there. Thanks for sharing!
Dee
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As someone who did get the TCHP chemo, and had serious, still lingering side effects, tne Herceptin alone has been a cake walk. My oncologist eliminated the Perjeta after round 6 as that is what caused many of my still continuing SEs.
I’m getting echos and they are all perfectly fine so far. I have 4 more Herceptins to go.
We’ve had a beautiful weekend here, my youngest had her Prom and after prom party 12-6 am. My husband and I volunteered at that all night. Then today I finally got to go swimming, it was cold but refreshing. My first oncologist said absolutely no swimming during chemo either pool or lake and it was awful to not bd able to enjoy tne water. He said there was way too much bacteria in tne water and that chemo was poison that could affect other people in tne water. I was so happy today to swim
Also middle daughter got engaged so tne planning has begun 0 -
I think the term “cake walk” or “walk in the park”, as used on these threads, simply means we made it thru the valley of the shadow of death and are still alive and grateful. It is not to minimize the SEs (which I had) nor not feel deeply for those whose journey was different. Just a personal experience shared.
I personally love reading and learning from everyone’s journey. I feel like we are the closest of friends although most of us will never meet in person.
I am getting ready to take a new journey in life. My hubby just retired. We live in Wisconsin where it seems like it is Winter everyday except perhaps August 15th!! We are taking a road trip to the East Coast looking for possible places to “Winter”. I think warmer weather will be good for my health. I do love Wisconsin...it is our family home so we will always be here at least half of the year. Anyway, we plan to be gone a minimum of 2 months (will still post). My issue has not been what I need to remember to take but rather locating the best healthcare facilities everywhere we will visit. I don’t anticipate having problems other than needing to get my port flushed. I told my MO I could probably do it myself since I’ve been having it done for so long. He didn’t like that idea!! I have an appointment for a flush in June at a Cancer Center in Charleston SC!! How cool is that!! It just feels very strange doing internet searches for Cancer/Healthcare Centers across the country! I wonder if it will always be that way. I guess if this is the worst of my issues today I am blessed and can move on to learning to live with my hubby of 44 years full time & keeping my sanity!!!
Thanks everyone for your posts today & I hope to see you tomorrow no matter whether you are joyous, crabby, sad, scared, hurting, or just received wonderful news! We will laugh with you as well as cry with you. Genuine heartfelt hugs to all! Juli
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Hello..
How are you doing now? Your story is just like mine. I am 38 years old no kids...i probably fed the cancer cells with all the fertility meds i took while trying to get pregnant
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Hapa, welcome. The BC detour leaves us confused, frustrated, overwhelmed and fearful on many days. We want to live so we follow protocol and pray that they (the doctors) don't miss anything. I have found that this site is a good place to be. Words of wisdom, tips for SE's and a place to put out all of those feelings that we have that we don't share with family. I am/was so grateful to have found a place where people understood what I was going through and where I was not alone- I felt so alone in the beginning. Once again, welcome.
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hapa, welcome to a ton of info and support! Sorry you have had such a hard time so far.
Hapb, thank you for all your research, some of it i read, most i skim through. But still nice to have the links available. That's my choice
Poseygirl, i used to watch cheers with my dad. Loved that show. And yes this bar is like a whole other family. They are wonderful. They all "showed" up the day i stopped in the bar after my last rads with a big pink beach ball and each one signed it with a goodbye cancer quote. We then went outside and kicked it down the road. It was awesome. About 25 adults kicking a huge beach ball down the road telling bye cancer!
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Juli--Charlottesville is highly rated on all of the "Where to Retire" lists. Just sayin'. . . ;-)
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Shelabela, I would have loved to see that beach ball being kicked around. What fun!
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Hi Ladies, I posted about this in another thread but I feel more connected to my triple positive sisters so I'm posting about it here too. I began to feel some neuropathy recently but I would consider it to be mild. I have tingling and odd sensations in my hands and feet every day but not all day. Sometimes it only happens for a few hours, sometimes for at least half the day. I met with my oncologist on Friday about it and he said that I might only be able to make it to 8 treatments instead of the 12 he was hoping for. This scares me! But he said that neuropathy sometimes does not go away and he wants to make sure that I don't have to live with this for the rest of my life (I am about to turn 52 in May). I am taking B6 and BComplex twice a day but he still does not think I should take L-Glutamine. I am going to print out the article that SpecialK had put in one of her posts a few weeks ago and give it to him tomorrow when I go in for my 7th chemo. Did any of you have to stop chemo early due to neuropathy? I am scared my cancer has a higher chance of coming back if I stop chemo early. I am icing my hands and feet to the point of misery during infusions which was supposed to help with neuropathy but apparently that is not working as well as I had hoped. Any thoughts on this would be appreciated! I am always grateful for having found this forum!
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tld - in addition to discussing the addition of L-Glutamine you might also ask about a dose reduction of your Taxol if you are determined to try for all 12 infusions. Also, ask about total dose with 12 versus 8, and ask to compare to total dose with other chemo drugs to get perspective on total quantity with the 8 you have received so far. Ask also whether there has been efficacy with the amount of taxane that has been combined with your targeted therapy thus far, and if this is enough, in your MO’s opinion, to provide protection going forward knowing you will continue with the anti-Her2 therapy. I did experience neuropathy that did not resolve between infusions from about the half-way point (of 6 TCH) but I continued with the supplementation and by the 90-day mark PFC all neuropathy had resolved
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tld, I started having some neuropathy in fingers and feet starting with taxol #4 and asked my MO if I could have a reduced dose, which she did reduce by 20%. I was also allowed to skip a week here and there to recover, so 12 treatments (which I never thought I'd make) took me 15 weeks. The neuropathy faded after a few months and is completely gone now. Oh, I did the icing religiously and took a prescription B complex/methylfolate for about six months. Maybe that helped-who knows?
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