ER-, PR-, Her2+ Roll call
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mheibel - here's a link with lot of tips for surgery. https://community.breastcancer.org/forum/91/topics...
Yes - my eyes leaked. Technically 'dry eye' if you want to research. I did go to my ophthalmologist and got drops that really helped. Fortunately able to skip the plugs.
Kamara - I was pretty draggy by the time i got to rads. But I'm one of those that drove myself to chemo alone every time with no problems - and I did the same with 5 weeks of rads. The drive and changing into the gown took longer than the 'zap'. And yes, the fatigue was cumulative. I took lots of naps.
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hi. Just to update everyone, I done my first chemo today. Herceptin with injection at thigh, thn T +C. Took me 4hours plus to complete the infusion. Using Paxman cap as well. I also carry ice pack for hand to hold and one in foot to step. With ice box, I get it replace alternative. With big ice pack working hard to freeze up the few that I use alternatively. I also try to take ice cube.
I am feeling tired now. Nurse said SE will only kick in in day 3/4.. not sure what else I can do for now. Just try to eat healthy and see how it goes over time
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Isme, I was warned that the chemo would have cumulative side effects, so when I was really knocked down by my first infusion I wondered if I would make it through six. Later I learned that my MO gave me what's called a loading dose. The cancer hasn't been exposed to chemo and they give you more than you get the rest of the time in hopes of really impacting the tumor. I generally found that I popped back more quickly and felt better as time went by.
Regarding Perjeta and diarrhea, it seemed like my body eventually decided it was going to deal with it, just as Henrietta has experienced, and in my case eventually I did not need Imodium, unlike my experience with Nerlynx!
Henrietta, I totally understand why anything about cancer would not be something you'd want to read. There was a Lifetime movie made based on the book called Living Proof and I've not watched it because I definitely don't want to see an emotional movie about cancer! It's thrilling to hear that you are doing well on Herceptin and Perjeta only, and the best part is that you have many options for the future, all thanks to the initial work of Dr. Slamon. Nerlynx and Tucatinib can take women with a high tumor load in the brain to no evidence of active disease--I know of many MBC ladies who are right there right now. I persist on with Nerlynx because it is the only drug I will have taken that crosses the blood brain barrier, but it's been a gastronomic challenge, to be sure.
mheibel and KamaraKaye, MinusTwo sent you to the right place for BMX information. My biggest recommendations are: 1) take a stool softener because the pain meds they give you during and right after are constipating--get ahead on this one. 2) Ask about a nerve block. They gave me one and it was about three days before my nerves "woke up." I think it made my whole recovery easier and faster 3) Bring a small pillow to protect your chest from the seat belt for the ride home. 4) Move your arms as much as you can or as much as your surgeon allows. I have a close friend who basically became like the dinosaur on Toy Story--she would barely use her arms to flip on a light switch and she ended up having to go to PT to regain her range of motion and never really did regain it.
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Yes to the stool softener if you're taking pain meds after surgery. But since I had continuing diarrhea with my neo-adjuvant TCHP, it was hard for me to believe I'd need it.
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Hiya, BeesyTheOtherOne & DogMomRunner (and all) -- yes, here I am. Tuesday was Taxol 6 of 12, so halfway through that. This past weekend was the first time that exhaustion and side effects really caught up with me. I thought I was coming down with something, which set off a ton of anxiety in this COVID-ridden world, but was eventually talked down by a couple of kind nurses, and reassured by good labs when I went in for my infusion. Even still a bit of hair, but the next few days will take care of that. So, hanging in there, sometimes just by my fingernails, and relieved to be on the count-down instead of count-up side of chemo. Taking so much inspiration from the strength and successes large and small reported here.
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Thanks for the information KamaraKaye. If my eyes continue to tear, I may look into Claritin for a quick fix after my surgery. I'll also look at the SE message boards.
Thanks so much!
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Kamara,
I was diagnosed her 2 positive, -Er/-pr stage 3 with lymph node involvement in December of 2014 at age 37. I had a seven month old and twenty month old at the time. I had about ten tumors that spanned 10cm. TCHP got me a complete response. I couldn’t believe it. On top of that, I got pregnant naturally in 2018 and had my third child in November of 2018 at age 41!
This website was my lifeline for so long. I hope you find hope and encouragement from all of the wonderful ladies here0 -
Raleighgirl, thank you for coming back here to give us the motivation that we need
It means a lot to us who are still in the midst of treatment.0 -
hi raleighgirl- congrats on your journey. It's inspiring to see everyone's story.
My port is out. My BS took it out yesterday. The lidocaine hurt like crazy. It took a little longer than I thought it would. And the sensation when the catheter came out was so bizarre. Now the area is sore and swollen but I look forward to no time having to wear some sort of port pad to protect it from my bra strap.
I also got to keep the port. Maybe I'll make a keychain out of it.
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DogMomRunner: CONGRATULATIONS!!! Happy dance for you. Woo-hoo!
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Congrats dogmomrunner!! Great news
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I'm fairly new to the ER-/PR-/HER2+ group and while I'm sorry that any of us have to be in the breast cancer group, from what I have been reading and seeing over the last month our outcome does seem much more positive than outcomes for a lot of the other combinations, which is something I cling to. I had my first round of TCHP chemo on Friday and so far my side effects have been mild, although from what I have seen on the July Chemo Club board, days 1-2 usually aren't that bad and the SEs start in worse after day 3. Guess I shall see.
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Well hello ladies!
I'm sorry that we are here, but I'm glad to see that those of us with this diagnosis are doing well. (Or as well as can be expected.)
For me, it seems like breast cancer has just consumed my world since 2015. I am tired and want to be consumed with something else, lol! I have my double mastectomy with immediate DIEP flap reconstruction scheduled for August 20th. It's been re-scheduled once before, so I am seriously hoping and praying that does NOT happen again. I am just SO ready to be DONE. Once this surgery is complete, all that is left is to continue with Herceptin for 7 more months. Oh and any revision surgery that may need to be done. Fingers crossed, I will be 100% finished by March of 2021!
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Anyone on this thread with ILC rather than IDC??
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kamara the reason I do not post as I was stage 4 when diagnosed with 1.5cm IDC that spread to my liver. Most of the people here are earlier stage. I don’t want to scare anyone. So I just read and wish everyone the best. I did have a CT scan today and I am NED and continue on Herceptin and Perjeta every three weeks. I am blessed and grateful I do not have to take those hormone blocking meds and I have never stopped treatment.
Wishing all the best and that you will never get a reoccurrence after treatment ends.
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Almosthere- please don't feel like you shouldn't post here. I think everyone here would like to hear about everyone else's story no matter what stage they are. Cancer is scary yes but nothing comes of sticking your head in the sand and believing that it won't happen to you. And congratulations on being NED!!
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And I rarely post there because mine was so early it is off the charts. Don't want to see others cry with could'a, would'a.
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Perfectly said, DogMomRunner!!!
Please continue to post, Almosthere.0 -
Hey all of you - early, late, stage IV, stage 0 - if you're HER2+, please do go ahead and post. I for one need your input so whatever happens down the road I've been able to take a look & process it ahead of time. There are so many interesting developments with HER2 that I think we all need to hear about.
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Agreed, MinusTwo!
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Beesy - how come it never hit me that you're in Houston too? Darn Covid or we'd schedule lunch soon. I'm in the NW part of town but my docs are all in the Med Center so I'm all over (used to be). Hope we can get together when it's safer.
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MinusTwo, I would LOVE that! My WBC's have been in the tank since treatment and when I saw my MO in March right as the "world turned upside down," his last words to me were, "Be careful because of your low counts." Nothing like hearing those words right as a pandemic is hitting the world. So I've been very careful and have the luxury since I work from home, and these last months my WBC's have slowly improved. Last week hapa was in town for a checkup so I met her in Rice Village for an outdoor lunch and it was delightful! I came home and told my husband that I did not realize how much I'd missed those little things that now seem like luxuries.
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Hi
I have a question to those who had TCH before undergoing surgery.My mom is about to have her last infusion (6th) of TCH. And now, she complains of having a back pain whenever she does something that requires extra energy like exercising or doing some light house chores. She gets tired easily too. But thankfully, it goes away after she gets some rest. I can't help but worry and overthink if it could've been a bone mets already
Did you also experienced this during your treatment before? Is this just normal and nothing to worry about?Thank you!
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Buy the end of 6 rounds of TCHP - I was exhausted all the time. Seems like lots of body parts ached. I'm assuming they'll do scans to see if the tumor shrank or she had pCR (complete response)? How long a break will she have before surgery?
If you'd go to My profile in fill in the diagnosis & treatment plan, it would make it easier for everyone to answer. After you fill it in, you need to make it 'public' for us to see it.
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Almosthere I am also stage 4. I totally understand you. Sometimes I feel weird to post something as in my case there is no cure actually. So not a very positive example.... Nevertheless, last scans show ned. On herceptin- perjeta for life of course. Wish you all the best! It just feels sometimes so unfair to have sth incurable.
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grateful , well and happy in my 16 year, (despite horrible prognosticators @ Dx)
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I'm 60 years old, and was diagnosed stage 2 ER/PR–/HER+ back in April. I did 6 rounds of Herceptin & Perjeta + 2 chemo drugs, and am now recovering from my double mast. My body is relatively back to normal (all things considered), but I am still dealing with edema in my feet and neuropathy in my feet & hands (Have any of you had neuropathy, and did it dissipated over time?). I just found out there were apparently some residual cancer cells remaining around the tumor site after the surgery (thankfully, none in my lymph nodes), but they are going to treat it by adding another targeted med to the Herceptin infusions I'll be getting through April. I have to say that, although this hasn't been a fun 6 months, it wasn't as bad as I expected. I didn't have nausea (because my doctor loaded me up with anti-nausea meds), and the unpleasant side effects only lasted about 7-10 days after each treatment.
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Dear All, has anyone of you had primary or acquired resistance to trastuzumab-based treatments? Were you CK5 tested? I just stumbled across several articles where they discuss Her2 heterogenity and "basal like HER2+" which is usually CK5 positive and is highly chemo/trastuzumab based drugs resistant. CK5 positiveness is associated with resistance to trastuzumab-based regiments.
Saulius
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Hello - I'm new here and wanted to join the party. I'm generally more of a lurker than a poster, but may find that I start posting more often once treatment starts.
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MochiPie,
Sorry you find yourself here. We are a minority in breast cancer (only 4%, I've read), so there's not a lot of activity here, but if you have questions, know that there are a few of us who follow this thread and would answer questions if we are able.
Best to you!
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