Overwhelming yet trying to be positive - a new reality

Meme117

Diagnosed 2/25, knew it was coming after reading ultrasound report. IDC stage 2 triple+.

Saying I have cancer has been the real part - honestly it sucks! Family and friends have been wonderful but I'm already tired of explaining over and over. Anyone use Facebook to share info or a website?

Appt Monday with MO to set up the chemo. Plan is 6 rounds through 18 weeks, then lumpectomy or mastectomy, then radiation - it's going to be a longer process than I imagined. Making plans now to deal with hair loss😢 but I am determined to be a warrior!

sewingnut

Meme, when I was diagnosed I used Facebook to start the dialogue. My first post was " I see a port in my future and its not the cruise ship kind". That let everyone know what was going on. I let this journey be a learning experience for me and everyone around me. It helped. Good luck on your ride. I had an entire year with Herceptin. I see your are +++. There is a wonderful Triple Positive thread here.

Beachbum1023

Welcome meme, I am so glad that you are here, the ladies are amazing, and will be a constant source of support for you. I am not a Facebook user, and I told the people that needed to know on a need to know basis. I try to keep some area of my life cancer free. I have been doing cancer since last June 9th, so it's been quite the ride. But my happy place is the Lake and the Beach so that is my free zone. I'm just waiting for the Lake to thaw to get back to my happy place!

There are many ways to deal with everything here, there are threads for side effects, hair issues, chemo, and rads to name a few. I post on many different threads. Let us know how you are, and ask questions you will see a lot of new friends drop in to welcome you and help you.

Lilyn

Hi Meme I know you cant even quite believe this is all happening. I remember my breast surgeon telling me I also knew it was coming. I ended up having bilateral breast cancer two tumours in one breast and one in the other. I am also triple positive and did chemo and a year of Herceptin. Wanted you to know that was in 2009. I look back now amazed at myself how I did it all, but you know what we do it. Chemo always seems such an awful thing but actually did not have much of a problem they give you all kinds of pill for nausea etc before. Hair loss is strange for sure, starts to slowly come out about two weeks after starting chemo, I just ended up getting it buzzed. I wore soft scarves and lots of very pretty earrings. It will seem like a long time coming back but slowly and surely it does. I used to get quite annoyed watching those commercials when shampoo models were swishing their long hair about. I wish you strength and love I know it is such a challenge but you will go step by step and in six years you will be looking back and writing to another women who is facing our journey xo Lois

ElaineTherese

Meme,

No, I'm not a Facebook person, but I did have a friend who became a point person about communicating information to colleagues/friends. It helped save on the repetition. As a fellow triple positive, I did neoadjuvant chemo, too. It was worth it -- you can really see the chemo working, and I was able to get a lumpectomy rather than a mastectomy, which was nice because I'm not interested in deciding about reconstruction/no reconstruction right now. I just have rads left to go, so the end is near.

Best of luck to you and drop by the Triple Positive Thread some time!

april25

Yeah, the whole saying that you have cancer thing totally sucks! I talk about it as little as possible. BUT, yes. I did use Facebook. I'm not big on FB, but it was just an easy way to get a lot of information out there quickly and to a lot of people... I didn't want to be endlessly going into all the details, and I've been lucky and haven't had to! AND the nice thing was that people I only knew slightly contacted me because they had gone through the whole BC thing. They were super-sweet and helpful. And I had people crocheting me hats and sending me audio books... Not a LOT but just a few, but it was sweet! I was happy to be able to message with a few people to get their experiences and they were great at listening to my whole panicked craziness right at the beginning when I felt like I was drowning under all the things that were going on. That, and this forum, helped a LOT.

So, FB turned out to be a great help!

It was nice reading through the nice comments people were leaving, too.

And all I had to do was do a couple of posts about what had happened and what was going on. I should probably do another, just in case people want to know, but I feel no pressure to do more now, since I'm in the middle of chemo, which is taking forever and isn't changing a lot... So at this point, I can take it or leave the posting on FB. The good thing is that I don't feel I'm forcing all this bad cancer news on people. They are free to skip over it all, as far as I'm concerned. So no pressure either way. I'm actually very glad FB has be good for something!

Meme117

Thank you for responses.

Sewingnut, I love to cruise, can relate to port comment. A year of herceptin? My BS said this would be in my treatment but I don't think a year. How were your SEs? Where is the triple positive thread?

Beachbum1023, I also love the beach, I'm about an hour and a half to jersey beaches. Can't wait till our snow piles are finally gone and the sunny weather returns. Not sure if I'll feel like the beach since I'll be in the throw of chemo over the summer.

Lilyn, where did you get your soft scarfs? Trying to find a variety of sites.

Elainetherese, thanks for the info. I do have one gf who is being a point person.

April25, I think fb would be an easier way to reach a lot, I'm not much of a phone person, I already owe some return calls now😁 looks like I'm going to be having the same chemo treatment can you give me any pointers? I'm ready to get this over with!

sewingnut

Meme, here is the +++ thread https://community.breastcancer.org/forum/80/topic/764183?page=900#post_4325343

I had TCH chemo. I had no nausea because my Onc pretreated w/ Aloxi, Emend & a boatload of steroids. I did have constipation from all the anti nausea meds followed by camping in the bathroom from the big D. I had TC every 3 weeks and Herceptin weekly for 18 weeks. Then had the Herceptin every 3 weeks to finish out the year. When I went thru 4 yrs ago the standard of care for Herceptin was a year. I did have the H run over an hour each time. At first they were 30 minute infusions but I was so achy I couldn't stand it.

I also had a nuelasta shot the day after each TC treatment. I took Clariton for the bone pain that I had.

Lilyn

Hi meme think I got scarf at hospital shop they had a centre with wigs and accessories. I also had this wonderful short wig a bob so it came just below chin line but top was open net so not hot at all in summer just put baseball cap on and looked just like my hair on sides. So many things now u will venture through but we are all here every step of the way!

Trvler

I totally get getting sick of explaining it over and over. I am kind of private and not really comfortable with posting it on FB. Sometimes I think I should just tell the area gossips and let them disseminate the information. One of them called me today, as a matter of fact. I didn't tell her. Just not ready. She will figure it out soon enough.

Wait, I might not get my hair back EVER? This is an new one on me? Or is only with that one drug?

Beachbum1023

Trvler - visit chemocare.com they have all of the drugs on the site and they list all of the side effects. Some drugs you have to go to the manufacturer to get the rest of the uncommon side effects. But Taxotere can cause permanent hair loss. I rolled the dice with Adriamycin and I "won" the permanent heart damage from it. Another uncommon side effect that 10% or less of the patients have. I think they need to let the patients know that it could cause permanent side effects. Tough to decide when you know what may happen. Instead of what the MO tells you. Seems unfair. I also "won" tumor growth from Taxol. I cannot have either one again because of the "fail" and I am at lifetime dose. Sucks being triple negative as well for me. I have so few options for treatment to begin with. Do the research, it is all about you!

Trvler

Thanks for the info, BB. I am sorry about your issues.