Starting Chemo March 2015

pboi

Yay for hair, Sharon!

Molly I too have to chime in and say beautiful lashes 😊

PB

molly1976

Thank you! You guys will get there! Mine grew back very fast after they finally fell out a month or so ago.

Trvler

When was your final Taxol, Molly? I think the lashes are bugging me more than anything.

molly1976

May 27th! Most of my lashes held on for another 6-7 weeks after that and then all fell out within a couple of days. Even so, by the time they fell out there were tiny new ones showing up within a day or two. I think maybe new lashes were pushing out the old ones? I didn't realize how thin they had gotten overall until this new set grew in. They had thinned a lot over time without me realizing it.

BBwithBC45

Eheinrich, my TE has a port, which is hidden under the skin. During fills they locate the port with a magnet and they poke the needle through the skin into the port. My skin is completely numb there, so I don't feel the needle at all.

I was prescribed muscle relaxants at my request, because I was worried about muscle spasms. I haven't used a single one of those pills. I never had much pain with the fills, just some discomfort for the final couple of fills when the TE got very large.

ninjamary

Theresa - that's a lot of hair. It looks awesome. I'm half white (fishing line) so it looks like my sides and top are still bald.

Molly - you have the best eyelashes! Mine on a normal day/life were never that thick and long!

SueH58

BP - Geez that radioactive stuff is scarry! Did it give you SEs?

Katy - Thanks for asking. Not feeling too bad. Fatigued, but other than that not too bad. I'm very glad that was my last trip to that room. YUK!

eheinrich

Here's my hair!

Italychick

OMG, you have "bangs"! I want bangs. Seriously, looking great!

Trvler

Awesome, Eileen!

Jackbirdie

You HAZ HAIR!!! So cute.

And btw, 4 lbs lost! On my frame that would be 20! Excellent work dragging yourself to the gym. Very proud of you.

molly1976

Amazing, Eileen!

ksusan

Cute, Eileen! (For me, that would be "my usual haircut.")

eheinrich

Awww. Thanks ladies

Jackbirdie

So my first MO follow up appt. was a big yawn. They took blood, we talk in a month. My BP was really high, he didn't say anything. I asked about their new nurse navigator and asked if she could be of any help, with "survivorship" issues (hate that word, but...) drew a blank stare from the girl who schedules her. Apparently they don't know what she does. I asked the MO, and he said it was a new position and they had started her with a small beginning group of like patients. But he thought it might be helpful to her to work with someone like me. WTF! I'm going to train the staff!

He did tell me he thought I might get some benefit from lymphedema massage. I told him I hadn't yet been evaluated, but I have pain, not swelling. He said it still might help. Okay, fine. I didn't know there was someone who did that at this hospital. I can't imagine it could hurt.

We talked a bit about how awkward it was, and that I suspected I was not alone in this, to go from being hands on every week for almost 8 months, then shoved out of the nest. He nodded. I said living without estrogen was no picnic. He nodded. We talked about what I "am" now, and we agreed neither of us like the word "cured". He likes to say NED or in remission.

I shared with him a clever little acronym I picked up on another thread. NFLD. I said the reason it's so awkward, is we are just sitting ducks here, waiting for something to happen. NOT LOOKING FOR DISEASE. No scans, no blood markers. Oh, I understand why, but I told him I thought dropping a patient off the edge of a cliff wasn't complete care. He nodded. Yawn. He didn't think NFLD was as funny as I do.

Yeah....I'll see you next month. Where's the Ativan? Let me rephrase that: where the FUCK is the Ativan??

Carrie37

Hi all, I think I've finally caught up reading all the posts from the last week. I've been back at work this week and gearing up for surgery next week. Katy, congrats on the move! congrats to those finishing chemo and growing hair. Mine is slowly coming back. My nails are awful and I am four weeks PFC today. Tonight I was feeling my boob, the affected one to see if I can feel the tumor. I'm told it's gone but I always check anyway. I found a different lump and I'm trying to not freak out. It is on the same boob, but near the armpit (original tumor was near chest) and it is sore when I feel it. I wonder what I should even do about it. Nothing? My boobs will be gone at this time next week anyway. And remember that time I wanted to keep my port? Yea, that was stupid, I can't wait for it to be gone.

Carrie37

my lovely nails.

SueH58

Carrie, are you afraid of the BMS or glad you won't have to worry about your boobs any more? I don't mean to make you uncomfortable, I just know that would have crushed me, which is why I took the lumpectomy route. Who knows, I may end up having to have a mastectomy some day. Hopefully my cancer is gone for good. My mom went the mastectomy route and had no problem at all. Said her breasts were so small you wouldn't notice the difference and had reconstruction.

Katy - I don't see my MO again until February. I guess I was really shoved to the curb. Although for what you gained from the apptmt, you may as well have waited 6 months. I will see my RO, so maybe that makes a difference.

Eileen - your hair is adorable. Did you have it shaped?

Carrie37

I think I'm afraid of the physical pain and the emotions behind losing a part of my body. An LX wasn't an option for me because of the DCIS in the same breast. I really don't want to change my body but I feel I have no choice. And I hate that. We all do. But we have gotten each other through it. We suffered through it with bravery. It sucked! Cancer sucks!!

As far as a meet up; I hope I can come if we do a weekend in March. I won't have any leave time left from work so it might be tricky. My DH and I are planning a trip to St. John's for spring break. I would love to come to the northeast and meet some (or all) of you

Jackbirdie

Carrie- What day is your surgery? I wanna have my mojo ready.

Sue and other members of the Tutti fan club: here is your daily fix-

SueH58

Carrie - hugs to you and prayers that you will do great physically and emotionally.

On a good note, YOU ARE SO LUCKY! I LOVE St. John!!! The most beautiful island on the planet, IMO. Where are you staying? We've been several times, but not for years.

SueH58

Katy - darling as usual. And, every time I see a pic in your house a see another beautiful quality. Gorgeous floors!!!

Jackbirdie

that's a funny little area near the front deck with different flooring than everywhere else. It's strange but I have always liked those pavers. Matches HRT (Her Royal Tuttiness) pretty well. She was sent that little mouse filled with organic catnip from a bco member as a housewarming present. she has quite the fan club haha.

shaz101

Has anyone heard about this? And what sort of tumour

Italychick

Sharon, food for thought. But what does it really mean? My understanding is that chemo is really to target and wipe out circulating cells in the body. A potential incidental success of chemo is when neoadjuvant chemotherapy Shrinks the tumor or kills all the cancer cells so that by the time of surgery, a pathological complete response is achieved. But in reality, chemo is to remove any rogue cells not encapsulated in the tumor that have escaped into the bloodstream to set up shop somewhere else in the body. I have always thought that was the primary purpose of chemo. Or at least that is what my oncologist has told me

The way I look at it is, you have a forest fire. Water or flame extinguisher is dumped on the primary fire. Then, fire crews work to extinguish embers left over from the fire. That's how I view chemo. Surgery removes the tumor, and chemo goes in and cleans up all the potential burning embers.

At least I hope my understanding is correct. Otherwise, why do they give us things like neulasta to increase white blood cell counts? Based on that article, it would seem that they would want everybody to become neutropenic during chemo. Very confusing!

wpmoon

Eileen and Molly - Loving the hair/brow/lash growth!

Molly, I forgot that you finished chemo in late May, so I will stop searching my face nightly for brow and lash growth, and (try to) be patient.

PBoi - I went to a support group for young women last week, and one of the women is going through her second round of the iodine radiation next week for her thyroid cuz there are still cells in her blood work. I really hope that this one time is all you needed! You've been through enough! So happy you get to at least be around the kids again tomorrow.

Katy - LOVE seeing Her Royal Tuttiness!

And good news! That essay I submitted about my cancer experience? It won! I'm gonna be published. If I have the night off work, I'll be doing a reading at a bookstore.

Meme117

Molly love your lashes!! Maybe if they all fallout mine will grow back as nice. I see no rhyme or reason as to how they are falling out right now, little bit here and a little bit there, so strange.

E your hair looks great!

Katy I also love the floor. Your MO sounds like he doesn't get your humor. Do you get a scan before seeing him again?

Karen you went to PSU? I am surrounded by alumni seems everyone who works in our school district went there.

Jackbirdie

I'd like to know more about that study. It is very confusing the way the article is written.

I always understood that the shrinking of the tumor was a benefit for more than the reasons you pointed out Theresa. It can help surgeons get cleaner margins yes, it can "disappear" the cancer altogether. But the most important thing is it's the only time you have PROOF that this particular chemo regimen is working against this particular tumor. If it does not shrink, at least you know, and you can switch to something else. That's why they do Imaging to check what's happening during chemo. They can do a mid-course correction. Then see if something else works. Or try something different after surgery if they find they didn't get the pathological response desired.

When you do what I did, unfortunately i will never know if the chemo I was given successfully killed the rogue Itc's. It is a serious advantage to neoadjuvant chemo. So far it seems they have gone this route with larger tumors especially because of the added surgical benefit. Of course there is risk leaving it in their for longer than if you surgically removed it first. But despite that, I expect we will see in future more neoadjuvant therapy on smaller, earlier stage tumors.

Jackbirdie

Maryellen I had a baseline PET/CT before chemo to rule out mets before starting. Since they were clear, there will not be scans or tumor markers in the absence of symptoms going forward.

That's why I call it NLFD instead of NED.

Jackbirdie

Whitney CONGRATULATION!!!!

I had a very strong feeling you would win. I hope you get a book contract out of it. You can make a good book out of your whole blog, with each entry a chapter. Or combine some stuff.

There is a writer with quite a famous blog that I know Eileen and some others here have mentioned reading and enjoying. She edited the best of her blog and published "hyperbole and a half". I suggest you get the book, read it, then put together a pitch to that same publisher. It has been wildly successful. She has asimilar writing style, plenty of sarcasm and humor in with her native charm. Some people say her writing on depression is at the top of the field. But she's still funny, tongue in cheek, and easy reading. Just like you