Starting chemo February 2020
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I feel the same way. Most people are going back to their lives.
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Fab4mom- thanks, I am now handling it a little better, but that reoccurrence fear creeps up quite frequently. I also feel like my weight is pooling in my midsection...I mean, I didn’t have nice abs before (especially after 3 kids all 2 years apart) but I’m not usually so extra fluffy. My coworker asked if I lost weight recently because my face looked thinner and I replied it just migrated from my face to my gut lol. Oh well. My hair is in a crazy stage right now...it’s growing in but is so unruly and sticking out everywhere. I now have to “brush” it after a shower!
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Checking in, all is well. Kadcyla is treating me well. No issues from Tamoxifen. Just chugging along now. I can't remember if I posted but, my Ejection Rate dropped on my last Echo. Drs said it was OK to proceed with #8. I guess I'm good until my next Echo in February
ETA: looks like I got hit with Chemo Brain, I mentioned the echo results in my last post. I hear the Echo becomes a concern if the drop is greater than 10%.
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Morrigan- haha oh chemo brain...it gets the best of us! I had my last MUGA the other week and my ejection rate has stayed relatively the same. I had HP infusion today and have 2 more left and I am “done”. Last one is tentatively the end of January. Feels weird. Hopefully your ejection rate maintains or gets back up!
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My husband surprised me and we got a peloton! It doesn’t come until early January, but I’m so excited. He said after what I’ve been through this year I can pretty much buy whatever I want...haha, I’ll start making my list...I can’t remember who said they have one, but send me your favorite workouts!
I have 2 more HP infusions left. I should be done at the end of January. My MO and I keep going back and forth about whether I should do nerlynx. He doesn’t think it’s necessary for me or worth the possible side effects, or if my insurance would even approve it for me at this point. He said my odds of reoccurrence is about 10%, but of course we all know there are no guarantees. It feels weird having “wrap up” convos with my team (although I still have AI/OS for a decade).
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My fiance and I have wanted a Peloton for the longest but we have zero space. Enjoy.
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mmorigan - fingers crossed the ejection rate doesn’t drop for you. I’m glad you are doing well with the Kadcyla, I am too overall. It really hasn’t been too bad. I am schedule through the end of June, which sounds like a lifetime to me, but considering what we’ve all been through, I know it’ll be here soon.
Ajminn - glad you are feeling a bit better. Recurrence concerns hitting me harder again lately. I hate it. And yes to the mid section. I already carried my weight there and now it’s like a big old fat tire around the middle. It’s hard to avoid treats this time of year too. I think the hormone blockers just add to the struggle. Yay for the peloton!!! We got ours in September. I love Robin as an instructor. I try to balance things out, so I ride it about 2-3x a week. I can’t believe how hard it is, let me say that, I was pretty fit before all this, and now I’m way low on the “leaderboard”. But I just turn that off while I ride and give it my all. I use the app all the time, for outdoor walks, yoga, stretching. Really good content, I love it. And even better is my husband is obsessed. It’s been really good for him to have focus and burn off stress. He says it’s been our best purchase of the year.
I’m doing well, focusing on exercise, and keeping calm. My parents moved lately and put me in charge of seeking their house. It’s been a stress on me, and we are finally under contract. So I’m stressed that everything closes, and I sign all the documents, etc. but happy it should be done before new years.
I’m pretty sure I have lymphedema of the breast/chest. My left underarm and side are feeling swollen most mornings. I’m about to wrap up my lymphedema OT, two sessions left, and she won’t call it officially while still recovering from radiation and in active treatment with Kadcyla. But i do need to start wearing compression bras, and I’m still so unsure of what is “safe” with my left side. So many things can cause flare ups, and I’m nervous now that I’m showing signs. My arm seems ok though, so this just seems more like a minor annoyance than a major issue.
Hoping to get the Covid vaccine in the next month or two. Our local health dept already had an online registration. My onc told me to sign up through them, because the cancer center doesn’t have a plan yet for patients. I was able to mark cancer as risk factor, but it didn’t give an option to differentiate between active treatment versus just cancer. I was hoping since I’m still on Kadcyla, I could be higher priority.
Take care and be safe everyone. It’s almost the end of 2020, I can’t believe we made it here!
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Fab4mon - oh wow. I'm going to ask my MO about the vaccine (if they have any idea of when). My mom went to her GP on Wednesday. He told her that his office (dr, nurses, staff) all have to go in February to get the vaccine. He told her she probably wouldn't get it until June (she's 84 and lost a kidney to cancer). I personally think she'll get it in April/May and, I hope I can get it by then too.
I'm hoping I don't have any issues or delays with Kadcyla. I'd like to complete in April as scheduled. Then do my exchange and finally start Nerlynx for a year.
Ajminn - Are you done once you complete HP or will you try Nerlynx? I know you're doing Hormone Therapy for the ER+ part but, wasn't sure if you were thinking about more HER2+ treatment.
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My hair is so funky too. It's naturally curly so I've got hair "horns" on the side that curl up and the top is thick and just stands straight up for 1.5". I ordered some headbands but am generally thankful not many people see me these days.
My new boobs are totally not fat anymore - I'm pretty sure much of the fat grafted was absorbed. If I squeeze my chest together, I can see some ripples. Not sure if that's unavoidable. Anyway, not like I go around doing that! They look good under clothes. I don't have to see my PS again for a year unless something comes up.
3 more H&P infusions then I'm done. I start tearing up if I think about ringing that bell. No one has ever rung it while I've been there. I feel a little need to celebrate and ring it, but won't have any friends or family with me, so.. I think that will make me cry more and I'll be a blubbering fool in front of a bunch of nurses.
My joint pain/stiffness has gotten worse. My right hand/fingers can barely move in the morning, won't close most of the day, and my elbow joints are sore to the touch. I tried taking ibuprofen regularly for 2 days to see if it would help - but it didn't - so now I'm wondering if it's inflammation at all or something else. If it was inflammation, ibuprofen should have helped. I've also started a gluten-free diet and am really limiting cow dairy and processed sugar. Maybe it will do something... maybe not.
My husband (healthcare) gets his vaccine on Thursday. Even though I'm barely in treatment anymore, I selfishly hope I get mine soon too - but I haven't heard anything. Hoping for news with next onc visit. Just so I can go to the gym and work off my extra lbs too! I started running outside but now it's damn cold. I don't think I can do it below 40 degrees. And I suck at home TV workouts. Losing 15lbs was one of the silver linings of cancer/chemo (I don't care it's not the "ideal way to lose weight" - f*** it - I'm thrilled about it) and I've gained at least 5 back. No no no.
Anyone do the silicone strips for scar healing? Tips?
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Anyone do the silicone strips for scar healing? Tips?
My PS recommend mepiform. I like them, they stay on for a week, you can take them off to shower and then out them back on. I have no idea if they really work but every little thing.
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Morrigan- I’ve gone back and forth about nerlynx and my MO hasn’t brought it up or pushed it at all...we’ve only talked about it when I brought it up and mostly put it off because I wasn’t close to done with HP. Now that I’m nearing the end of that I’m seriously debating. I was leaning towards no but then I saw the post on the TriplePositive thread about the benefits that were recently presented and I want to push to take it. At worst, I can’t handle it and I stop...but I’d like to at least try!
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ajminn - that's my thought as well. If I can't handle it, I'll stop. From what I can tell you need to titrate up to 6 pills/day. Also, many people aren't even doing 6, some are doing 5.
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Morrigan- good to know. I’m hoping since that I’ve tolerated HP well that I’d *hopefully* tolerate nerlynx well too. As much as I’d like to just be done with everything (well, I still have OS/AI), I’d hate myself if I didn’t push for everything possible and it came back.
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Ajminn and mmorigan - I'm thinking the same thing, its worth a try. I'm scheduled to be on Kadcyla until end of June, and the info i have seen reads like I could take a break of up to a year before starting nerylnx. I still need to do my reconstruction surgery, and I'm leaning towards a Diep. So in my mind, the timing would be close to next year before I start nerylnx. I want to have have time to get off Kadcyla, enjoy a little bit of summer, have surgery, recover, and then start. I should probably share my timeline with my oncologist, lol.
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I'm scheduled to finish Kadcyla in April, unless I need a break after my next Echo. I was going to wait 4-6 weeks for my immune system to get right before doing my exchange. Which puts surgery mid-May.
I'm also planning and hopefully can go to Africa Mid-August (as long as I get the COVID vaccine in time). I'm thinking I'll start Nerlynx after I get back from Africa. Or I can start after surgery and then take a break for Africa. Given the main Nerlynx SE i don't really want to be on the drug while on Safari. 😂
Timing wise I'll discuss the best option with my MO. I do see people in my Facebook groups taking breaks before starting Nerlynx but, it's usually like 1-2 months. Not sure if there will be an issue if I wait 5 months.
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RE: Nerlynx conversation... my MO hasn't mentioned the possibility of any additional meds after I finish up HP. I'm hoping I'm just not a fit for anything because I had a complete pathological response and had nothing in my lymph nodes (at time of surgery - and it didn't look like there had been anything there before chemo either) and both my boobs are goners. They let me take a pass on radiation because of that too. Can I just consider myself lucky (in this regard!) - or are any of you still considering ongoing meds even though you had a Cpr or clean nodes? I have fears (bad dreams even) of cancer returning - but I feel like my odds are pretty good at this point, with having had a bilateral. I would not want to take medication that didn't really improve those odds in a significant way - but I want to know all my options.
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Nerlynx is on my radar because it has proven benefits for Triple+ (due to crosstalk) and it crosses the brain, blood, barrier.
My cousin was diagnosed at 26 (I don't know the type of BC) just that it was a large tumor and in her lymph nodes. She had a recurrence a year later and it was MBC (spread to her brain). She lasted about a year before passing.
My father had Prostate Cancer it came back 15 years later MBC (bones, lungs and eventually brain). He was in treatment for a little over 3 years before passing.
I'm not saying this to scare anyone, just giving a basis for wanting any/every treatment possible. It's always in the back of my head that I could "end up like Rosie".
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Hey guys! Sorry I've been MIA lately. I went back to work and everything is weird now. Went from working in a 6 story building to working from my bedroom desk and nobody seems to know what to say to me since I've been gone about 10 months. Hope you are all doing well.
Have any of you found anything that works well for the port scar? I've been massaging mine everyday since July but it always seems like it's getting worse instead of better!
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Morrigan, I get that - fear of recurrence having seen it happen in your family. Even though I have a gene mutation, there have not been other breast cancers in my family. So I feel like a bit of an anomaly. I don't think you can scare any of us any more than we already are.
What are you planning to do in Africa?
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@micdpowers - logically i know most people don't recurr but, I can't get past it 😕
Africa is a Safari. We were supposed to go this August but, this was just a bad year all around. We're doing 2 weeks in August 2021 and, 3 countries.
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Dysonsphere- glad you’re able to get back to work, although it’s weird times right now...as for the port scar, my port scar honestly looks like a small scratch. You can hardly see it...my surgeon was phenomenal. I hope it stays that way when I get it removed in the future. I did use Mederma cream for my mastectomy scars which seemed to work well.
Morrigan- a safari sounds wonderful! I promised my kids we’d take them to Disney World when my hair grew back long and covid was over, but a safari sounds much better!!
I too have a lot of reoccurrence fears that seem to ebb and flow depending on the day. I had my Zoladex shot today and it took the pharmacy a good hour to send up the shot...between the monthly trips for the shot and time wasted from work every time, I think I’ll just go for the oophorectomy in the next few years to cut the shot out...
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Dysonsphere- welcome back. Such weird times for going back to work, but safe at home is best. I still have my port, I feel like it’s going to leave a pretty big scar.
Mmorigan- Africa sounds amazing! Oh I hope for you that the vaccine works and travel is safe. I think a break would be wonderful after Kadcyla, it’s not that bad, but I bet when we go off it, we’ll realize how draining it really has been.
Ajminn - yay for Disney. We went summer 2019, thank goodness we knocked it off the list when we did. It’s hard to imagine being back somewhere like that.
Micdpowers - I think nerlynx is recommended more for people who had residual cancer. I flip back and forth between thinking this was it and I’ll be ok to feeling like cancer will be back soon. Almost no cancer in my family, so this has been a weird experience for me
Our big post cancer/Covid trip is Hawaii. Saving now so we can do a big trip and really enjoy ourselves in 2022. Traveling with four kids is such a pain and so expensive, but it’s more fun now that the kids are older.
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Merry Christmas!
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Merry Christmas! I finally gave in/gave up hats and scarves and am rocking the short hair (don’t mind my MIL’s photo taking skills...) Hope everyone has a great Christmas!0 -
Merry Christmas!
My oldest doesn't like his pics online hence the sticker lol
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Awww ya'll look great! Had a nice quiet Christmas with my son. Here is to a nice quiet New Years. So glad just to be alive and getting back to normal life, or at least as normal as it can be now!
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Happy New Year all! Here's my family's Christmas card. My hair doesn't look too bad in the photo from a month ago, but now my hair is a train wreck. It foofs out on the sides in a big, grey horn-like way. I suggested that I look like Wolverine. My husband said, "no, you look like an older Christopher Walken". I said, "OMG, you're right."
Got my third-to-last H&P yesterday. And my onc said she's going to talk to me at my last infusion about taking Nerlynx. Ugh. I guess there was a big oncologist pow-wow (conference) that she attended in December and the research about it shows it would be good for those like me too (no positive nodes, pCR, had both herceptin and perjeta). I guess previously they thought there wasn't much additional benefit for those who had the herceptin/perjeta combo. If she recommends it, I'll probably take it - so long as insurance covers it. Another year of diarrhea? Why not? I mean, what's so bad about pooping your pants a little while out for a run with your daughter? That happens to everyone right? (True story -I had to sprint back to the parking lot where the outhouse was - almost made it.) I was able to manage it ok with immodium before, so hopefully that remains. It's actually the mouth sores side effect that worries me more. I was able to manage that with ice in my mouth during chemo (and I still need to do it with just h&p) but how can you do that when you're taking a daily oral pill? I'm really prone to them.
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micdpowers, you look great. I keep my curls tamed by putting leave in conditioner after washing my hair. In the mornings, if I don't shower, then I have a spray bottle with water and conditioner that I use to wet no hair and organize it.
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mcdpowers - you look great!
December was the San Antonio Breast Cancer Symposium. Lots of stuff came out of it. Hopefully, my MO attended it as well. I want to talk to him about Kadcyla and Nerlynx.
In other news, Saturday night I had found a hard bump on my cancer breast and, proceeded to have a meltdown. After I calmed down I thought about it, I had done an exam on Wednesday and found nothing and, I sort of fell into a wall Christmas morning.
Saw my plastic surgeon yesterday the bump was the implant, I guess when I "fell" I flipped the implant over, so the back was facing out and the bump was the suture that's supposed to hold the implant in place. 😂
So relieved. Although, we'll have to do something with the exchange, smaller pocket? Bigger implant? Just glad it turned out to be a non thing.
Hope everyone is doing well and I hope 2021 is a better year for us all! ❤
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Happy to hear everyone had a good holiday!
Micd- my hair is generally a hot mess! I think you look great, but I totally get the crazy wolverine hair...I usually look similar when I wake up and sometimes there’s no taming it. I have my last infusion next month (currently at one now- happy New Years!) and will talk with my MO about nerlynx then as well.
Morrigan- so sorry you had a scare! I’m glad it wasn’t as bad as you thought (although a flipped implant doesn’t sound too fun). Hopefully you can it fixed up, however that may be...oh the things we have to deal with!
Also hoping for a better year for us all!!
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