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Starting treatment
Hope6
18 Posts

Hi, just learning how this site works. I have grade 3, invasive ductal carcinoma, HER2+. Beginning my neoadjuvant treatment on Jan 21. Still learning and very scared. Would like to chat with others dealing with this.

27 Replies
brittanyc
107 Posts

Hi @Hope6!

Welcome to the community. Though I'm sorry for what brings you here, I'm glad that you found us. This is a great place to ask any questions you may have and find support. It truly is a wonderful community.

I'd like to tag @JMH who has undergone neoadjuvant chemo, @Runner Girl and @Skye2 who were both diagnosed with idc. Thank you all in advance for sharing with our new member. 🤗

Welcome again Hope6!
Take great care,
Brittany

Runner Girl
2894 Posts

Hello @Hope6

I'm sorry about your diagnosis. It is the same as mine was.

In 2018 at 52, I was diagnosed with IDC, ER+ and HER2+. I had a lumpectomy and sentinel node biopsy (clear), 6 rounds of chemo, 17 rounds of herceptin, 21 rounds of radiation, 2 years of tamoxifen and I'm a year into the 3 years on anastrozole.

Are you having docetaxal as your chemo? If so I suggest requesting ice for your hands and feet during this infusion, saves neuropathy.

Runner Girl

Skye2
225 Posts

Hi @Hope6

I’m so sorry for your diagnosis, but you have come to the right place! The men and women of this community have a wealth of knowledge to share, and will walk you through your journey.

I am 60 years old, and was diagnosed with both IDC as well as DCIS, in both breasts, as well as spread to 4 of 6 of my lymph nodes on the left side. I had a double mastectomy, bilateral sentinel lymph node biopsies, left axillary node dissection and insertion of tissue expanders.

I did 5 months of chemo (4 treatments of Adriamycin (Doxorubicin), and Cyclophosphamide, every 2 weeks, followed by 12 weekly treatments of Taxol (or Paclitaxel).

I then had 21 more lymph nodes removed on the left side as well as a lymphovenous bypass graft to prevent lymphedema. (and its working!).

I am currently undergoing 15 radiation treatments (I have completed 7/15), and will be starting aromatase inhibitor medication to help prevent recurrence.

I am ER, PR+, HER2-, considered stage 1, slow growing cancer, but they can’t figure out why it spread…(which is why I got the full meal deal treatment!!!)

I've also had a kidney removed for Kidney cancer 1 ½ years ago!!!

Feel free to ask me anything!

Sue

dibi
3 Posts

How does this site work. Can’t start my own discussion.

Hope6
18 Posts

Thanks for sharing. I am so new to this and have so much to learn. The names of the treatment drugs being one thing!! I cannot believe how long my treatment sounded so after hearing your journey I guess this is normal but it certainly feels daunting. My Dr has said one step at a time so I’m trying. You are very strong to have gone through all this!
I am very concerned about my chemo starting next week and about my 4 teens who are so worried and fearful of bringing home Covid when they head back to school.
Would love to know what precautions everyone is taking.

Hope6❤️

Runner Girl
2894 Posts
Hope6
18 Posts

Thanks @Runner Girl

I‘m open to any advice. With 4 teens I don’t know what is right. I think I will mostly isolate myself to my bedroom? They will be so careful and we got them the best masks but I can’t keep them from their schools. Cancer is stressful enough and Covid just makes another layer of challenge😞

JustJan
1728 Posts

@dibi welcome. To start your own discussion, when you click on the Breast Forum, there is a yellow button called +Add Topic. You will be prompted with a title for your topic and then a box to elaborate on the post. I hope this helps.

Aliya
59 Posts

Hi. Same , just got diagnosed. So so scared. I start treatment on Monday n just too overwhelmed with the information that was given.

Whitelilies
2447 Posts

@Aliya Hello….it is OK for you to feel nervous, anxious, and scared…. many of us are (I sure was !)…..May I ask what starts Monday? For example……if you start Chemo on Monday……we can support you…..and we can offer ideas/tips to best get through it…….so if you can share a bit more….when you catch your breath…we will reply with support! and ideas and tips….We really do understand….

Big Hugs To You,

Whitelilies

Hope6
18 Posts

I’m sorry. I know. It’s an emotional time for sure. Are you starting chemo? I also start next Friday. I hope it goes ok. One step at a time and positive thoughts.

Aliya
59 Posts

Yes. Chemo on Mon. So so daunted.tell me what you did while you were getting infused?

Aliya
59 Posts

Yes, chemo. it gives me courage to know so many women hv gone/going through it with positive thoughts. I wish you more strength

Mammabear
312 Posts

The beginning is scary. You have no idea how you will react to the drugs and what side effects you will experience. They list everything but many don't experience them. I had loads of nausea but no fatigue. Many are the reverse.

I was stage 1 Triple positive diagnosed Dec 24, 2014. Had lumpectomy, 15 months of chemo (ACTT which included a year of Herceptin). 20 rounds of radiation.

it is hard - not going to lie. Just start crossing them off and you will get through it.

Your hair will grow back. Your body will heal. You will be different. It took me a full year after treatment to feel like I had my strength back.

I maintained yoga and walking through treatment so do try to stay active when you can. Rest when you need to. There is a great book The Living Kitchen which has recipes that target side effects and healing.

And as for the teenagers. I am sure they are worried about you. Pre-pandemic we had hand sanitizer at the door and a rule to wash your hands when you enter and for the kids have them change their shirt post school and stay away when sick. The general population is so used to that practice now that you should be fine.

Reach out any time and keep us posted.

Essjay
2051 Posts

@Aliya good luck with your first chemo. They will take it slow and monitor you so the first session is always long…

I took slippers to keep my feet comfy, my favourite tea, a few snacks like baby bel cheese, fruit etc. I had my phone loaded with podcasts and my headphones plus a charger, and I took a puzzle book and pen as well as a physical book (I found chemo made me muzzy headed so I could never read for long)…these all helped, but often I slept during chemo, as well as having a nap when I got home.
The anti-emetics will mess your system up. some make you sleepy, others make you wired, some give you diarrhea and others give you constipation so consequently you have all of the above. I found it helpful to sleep the first two nights separately from my hubby so I could get up and use my own bathroom without disturbing him. You need to drink lots to pee out the chemo and it does feel like it’s a bit of drink/pee/sleep/pee/drink/sleep/pee/drink/sleep/pee for the first 48 hours…

Thewasp
69 Posts

Hi @Aliya @Hope6 and everyone . I just started chemo on the 10th. TC and Herceptin. I received my Lapelga injection the next day and had a port inserted on the 13th. I felt awful yesterday but today is better. While I received my taxotere, they placed cold gloves on my hands and feet. I hate the cold but it was strangely comforting. This is quite the journey we’re on. It’s the only way I can think of it. Thank goodness for this site and all the amazing support here. All the best on your treatment.

Hope6
18 Posts

Hi @Thewasp I'm glad to hear you’re feeling a little better. I will likely have the same chemo you’re taking but they now want to do my surgery first so I am back to my decisions surrounding mastectomy. It is a long journey but it helps knowing we aren’t alone❤️

@Hope6 @Thewasp @Aliya

I am so glad you have all connected with each other along with other of our members.

How are you all doing?

Lianne

PS - I wanted to give you a tip on tagging members ( as I have done above with your usernames)

Tagging or mentioning someone is a great way to keep discussions going. When you tag someone, they are notified that you are replying to them. To tag someone in your reply or post, type the "@" symbol and begin typing the username you want. A list of usernames will come up and you can select the one you want from the list. If you have done this correctly the username will appear hyperlinked in blue.

@dibi

Just making sure that you saw @JustJan ‘s explanation above on how to make a post. Don’t hesitate to reach out if you need help.

I will also include our FAQ for tips on using the site here: https://cancerconnection.ca/faq

How are you doing?

Lianne

Aliya
59 Posts

@Mammabear thank you for the tips n post. I am really interested In the book you mentioned, will look that up.

Aliya
59 Posts

Hi @Thewasp I am having an awful reaction to lapelga. Shoulder bones ache … 2nd day in a row… hopefully praying it subsides soon. I didn’t take the Claritin prior but later…

Aliya
59 Posts

Hi @Whitelilies I started chemo on Monday and lapelga next day … have major shoulder pain that I am hoping will subside. Anti nausea meds helped keep the sickness away … I will be getting chemo every 2 weeks

Whitelilies
2447 Posts

@Aliya Hi Aliya…..sending you Positive Vibes……..thank you for this update…..

Whitelilies

Mee
76 Posts

Welcome @Hope6 and @Aliya

My diagnosis in March, 2021 was IDC, stage 3, ER/PR-, HER2+, mass of 4.8cm in left breast. I had 6 rounds of chemo (Herceptin, Docetaxel, Carboplatin), and continued with Herceptin for 18 rounds (will finish this at end of April 2022). Then I had left mastectomy with axillary node dissection and am healing up from that. Fortunately, I did not require radiation as the surgery and chemo got all the cancer! Because of Covid, only the left breast was removed, but I had requested bilateral mastectomy. My surgeon will schedule the prophylactic mastectomy in May/June 2022.

Your journey will be challenging - not going to lie, but there is so much wisdom on this site, and lots of people who have experienced and who are experiencing the same or similar thing as you. Take things one day at a time, and try not to anticipate problems. Listen to your body! Do whatever feels best to you in the moment. Best of luck!

Aliya
59 Posts

So much continued strength to you, thank you for sharing your journey.❤️

Beachalog
47 Posts

Just got diagnosed too. Doesn't even feel real yet.

2DogMama
43 Posts

@skye2 I forgot to tag you in my reply to your initial reply to me on axillary lymph node dissection procedure--I was wanting to know more as to what are “tissue expanders” and also what is involved in a ‘bypass graft’ to help prevent lymphedema?

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