TRIPLE POSITIVE GROUP

Suburbs

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?

ElaineTherese

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!

moodyblues

Shelabela, Thanks for the smile for today.

SpecialK

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.

moodyblues

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

Tess111

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.

Jstarling

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.

KCMC

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!

deni1661

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 ;-)

Magari

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.

hapa

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.

PoseyGirl

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!!

kae_md99

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!!!!

Suburbs

Kae, good to hear your doing ok. Hope that shoulder gets better soon

astyanax66

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

LTWJ

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

Juli24

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

Princess_Meg

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

moodyblues

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.

shelabela

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!

Ingerp

Juli--Charlottesville is highly rated on all of the "Where to Retire" lists. Just sayin'. . . ;-)

moodyblues

Shelabela, I would have loved to see that beach ball being kicked around.  What fun!

tld2017

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!

SpecialK

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

bareclaws

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?

coachvicky

I was on a prescription vitamin B for years before cancer and chemo. I think that was why my neuropathy was minimal.

I take: https://www.webmd.com/drugs/2/drug-77966/folbee-or...

Vicky

LTWJ

I had TCHP chemo and my onc reduced the taxotere after #3 because of tne neuropathy. I’m 7 months past chemo and I still have no feeling in 3/4 of my feet. My hands feel slightly better and my hearing which was also affected seems to be getting better. My new oncologist ( fired tne first one when he prescribed oxicontin and cymbalta for the nueropathy) said that he would have stopped my chemo at 4 rounds. I tried some pill but stopped when it upset my stomach. I read somewhere t reduce sugar intake tne day of chemo because the neuropathy had something to do with excess glucose. I had gestational diabetes’s 2x so maybe that’s why I got it so bad and I also found it odd then tnat my onco Office served grape juice - very high sugar content- during infusions. I never saw a single person icing at my chemo place and there were always 10 or more people at all times. My infusions took 5-6 hours each time.
I don’t have any pain, just numbness.

shelabela

hapb, it was so fun. That group that i have there is incredible. More than half of them cried with me when i was diagnosed. They are older then me and sorta took over as my moms and dads. Both mine are gone. So to have them be there every step of the way is great. It gets a little tense when I need a ride though. They get Feisty when it comes to deciding who is going to take me.

hapa

Question for people who did TCHP: did all your hair fall out, or just the top? I was cold capping but it didn't work very well so I shaved my head over the weekend. I have a huge bald spot on top of my head, and just want to know if I should expect the rest of it to go since I won't be cold capping for the last 4 rounds.

Also, did you lose eyebrows and lashes?

Taco1946

tld2017 - I stopped Taxol after 8 infusions with the support of my MO. She said that if I had had node involvement she would have encouraged me to continue in spite of the very painful neuropathy. Herceptin alone wasn't a problem for me (and I did the 30 minute infusions every 3 weeks after I finished the taxol) although I appreciate that it is for many. I knew there was a heart risk. Obviously the reason we get quarterly echos is to monitor for heart damage.

Once I finished the herceptin, I made an exercise commitment. Fired up the fitbit and have continued playing golf and going to stretch and flex more consistently. We have an Aug. vacation planned (52nd wedding anniversary) which will involve a lot of walking and I am determined to be ready.

Juli - Especially if you are going to be a "snow bird", consider Arizona. I have been extremely pleased with my oncology team and chemo was only 2 miles from my house. We've been in the Phoenix area for 20 years. We followed my parents who had moved here in 1980. We have many midwesterners who winter here.

Retirement is an adjustment. One of the things I told clients who were looking at retirement areas was not to get housing that is too small. Most of us need space alone. In retirement, not only will you be spending more time together but we do lots more entertaining than we ever did pre-retirement. And if you are somewhere warm, you will have winter visitors. I love living in a senior retirement community. Always lots going on and someone to do it with. Welcome to the next chapter of your life.