Starting Chemo in October 2015

Hi everyone! SUCH a long day today and I'm SO frustrated with my MO right now. 5 appointments total today--I got here at 8am for labs, then echocardiogram, then first radiation treatment, then appointment with MO, and now Herceptin/Perjeta infusion. I waited OVER an hour for the MO. Then while we were talking about Tamoxifen v. oophorectomy, she said she'd go for the Tamoxifen because she just "personally doesn't like procedures." Who says that to a cancer patient who doesn't have a choice but to have multiple procedures (biopsies, port insertion, mastectomy, reconstruction, etc.)?!? That was really NOT a sensitive thing to say. Then I waited another hour for a chair in the infusion center. And now I'm missing all the kid stuff this afternoon that I was supposed to do starting at 5 (high school tour for my middle son, hockey practice for my youngest).

So I've been weepy off and on yesterday and today, feeling like cancer really f*cks everything up. I know I will be in a different place tomorrow, but I'm feeling very emotional and crappy at the moment. Sorry for the complaining...just had to get it out.

Autumn and NC sue, you are right behind me in taxol. I'm finding it harder than I expected as well. The exhaustion is just awful. This past weekend I also had that dumb chemo sickness as well, you know when you feel sick and weak and just bad? Only 4 more left for me. One each the next 3 Thursdays and then we leave for Florida 2 weeks from this Friday.

I'm so glad so many of you are still visiting and posting here. I want to hear how you all are doing with surgery, rads, and recovery in general. And, I will need you alls support when I get my scans at the end of March. That is a major sourse of anxiety for me.

durhamgirl, sorry about your crappy day..

Homeschool, hope you have a blast in florida!

Andra, all the best with rads, they're a blast! 2 down, 14 to go for me!

Hope all of you are well and getting through chemo with minimal side effects! I think of all of you often

Andra, that is ridiculous that they would think you would change your lifestyle for weeks to keep the marks on! Could they not have moved up your Sim or did the appt closer to the sim?

MDW and Andra, there is a woman on the weekly taxol board who had severe swelling after taxol. You may want to go there and see what she said they are doing about it, since they are both taxanes, maybe it is related? Her posts are within the last 2 or 3 pages.

Hi all...it's been a while since I've posted, but I've been reading & trying to keep up with all of you. You guys just post too fast for me so by the time I can get off work and home to my computer, you've moved onto another topic!

I was supposed to have my final chemo session on Feb. 8th, but that didn't happen. My platelet count was in the toilet and still is for some reason. It's at 25K and my MO just can't get it to come up. He says my white blood cells are fighting my platelets, that my bone marrow wasn't cooperating...so he put my on steroids twice a day until the 24th to see if we can get them to come up. Jeez, it just feels like it's always something!

I was able to have the Herceptin part of my infusion on the 15th, and boy, was that an experience! I had never noticed before that the Herceptin gave me TERRIBLE hot flashes! Well, I sure notice now! I never had hot flashes going through menopause, so this was definitely different! I totally feel for any woman going through any hormonal changes and having these. They totally suck! Even my little bald head was just a sweatin'!

Before my whole breast cancer process started, I had just lost 50 lbs on Weight Watchers. I was so excited! Well, since July 2015, I've put back on 35 lbs of it and it's about to kill me! After working all day and going home to take care of stuff there, some days it's just tough to get motivated to move! I ordered the Cize videos from Shaun T (the Insanity workout guy) and re-joined the gym. The beginner video kicked my butt the first couple of times! I have to get this weight back off me. I have a question here....has anyone asked you why you have cancer and gained weight instead of losing it? I had someone make a comment to me to that effect the other day at work. Totally pissed me off! I had to calmly explain to them about steroids, exhaustion, etc. I had to just finally turn and walk away before I punched someone! Do you ever feel that people really just don't care because it's not impacting their world? Do you ever feel like friends and family just really are tired about hearing of your situation, and even though they ask how you're doing, they really don't want to know? Is it because they want everything to just be ok, normal? Well, we'd love to be "normal" too, but right now it's just not an option.

Ok, enough of my rant! Have a great weekend everyone!

Homeschool: Thank you for the tip on the Taxol board. I'll go check it out to see what they're saying. I reached out to my MO's office this week because the edema's gotten so bad. All my MO said is that the edema can carry on "for months" after chemo ends, and he recommended that I keep my feet up when sitting and lying down. I was hoping for something more proactive, frankly. Going to try to increase my intake of green and black teas, which are supposedly mildly diuretic.

That's excellent news, btw, that your immune system is normalized! No more trips to the ER for low-level fevers, woo hoo!

I have wondered about what taking Herceptin will be like in isolation from the other drugs, as I'll be starting Herceptin-only infusions once I get past surgery. I really, really hope the big D side effects are less with just Herceptin. Sounds like there are major league hot flashes to look forward to, ugh, per igay1ord. As if I weren't having those enough now!

igay1ord: I've also seen my weight go up in the last few rounds of chemo, and am starting to feel both dismayed and angry about it. Even though I suspect a lot of it is the edema, it still pisses me off. I hadn't lost 50 pounds before diagnosis, as you had, but had been in reasonably fit shape before the diagnosis--I ran a 5k last Spring and was at a good, if not ideal, weight--and to feel that that's been taken away along with all of the other losses this cancer has brought about--well, it just sucks. As for the person who asked why you have gained weight, I applaud you for not smacking them upside the head. I think I would have a hard time answering so calmly and politely. In the first place, it's out of line for anyone to comment about someone else's body at ANY time, unless it's been explicitly invited. But in the second place, to comment about someone else's body when they know that person has been battling cancer...wow, I just can't even wrap my head around that level of insensitivity.

And I totally get what you mean about people around us getting fatigued with our situation and seeming to not want to hear about it anymore. I've caught a bit of that--and I'm not even that far in my journey! I still have surgery, rads and reconstruction ahead of me. I'm fortunate to have some core friends who remain very caring, attentive, and compassionate and I try to focus on those people.

Andra: I too am surprised by the silence from much of my family. I tell myself that maybe it's scarier for them, and the silence comes from a fear that we're not going to be okay. But that doesn't make it feel any better. One of the big lessons of this whole ordeal is discovering, with some surprise, which people are "good" at compassion and which ones aren't.

Best to everyone, headed into this weekend. xoxo

Andra: Yeah, it's starting to sink in that my surgery is coming up REALLY fast. My mom and dad are flying here from FL to help out for about a week--they'll get here a couple days before surgery--which is awesome because we need someone to look after our kiddo, get him to school, etc., while my husband and I head down to Stanford for surgery. We'll be down there for a couple of days. Anyway, it's a convenient distraction for me right now that I'm scrambling to get ready for their visit. It helps take my mind off the surgery. I'm relieved that surgery is coming soon--I just want to get on with things, and I want to know that the cancer is out of me. But there's also some anxiety creeping in because I've never done major surgery before. I was exhausted last night but couldn't fall asleep because my mind started going to the very unhelpful "Hey, let's imagine all the things that could go wrong!" place. Thankfully I still have some Ativan on hand to shut that stuff down.

Lasix probably wouldn't be my first choice. I'm with you in the "more meds not for me" camp. I'll keep going with trying to keep my legs up when I can and hope that my body starts to regulate itself better soon. I am a little worried about my business trip to Denver next week, and how flying might exacerbate the edema. I'm going to get some compression hose before I go, in the hopes that it helps at least a little.

Question for folks who are a couple of weeks out from your last cycle: anyone noticing real hair coming in yet??? I've got stubble from my last shave of the chemo regrowth, but the stubble looks like more of the same...patchy, translucent white, weird. I'll shave this off in a few more days and then see if the next round of stubble looks different. Feeling impatient to have hair again!

MDW - so great your parents are coming in for your surgery to help out and give support. Try not to go down the path of things that can go wrong. It will all be OK! I'd never had major surgery either and it honestly turned out to be the easiest part of all this. I was happy my mom came out for mine - she's 80! I tend to not share much with my family since I'm so unlike them, but we've gotten closer over the past few years and I think it made her very happy to be here to support me too. We've become even closer because of it.

I have a lot of white/translucent stubble too. More each week, but I will continue to shave it down weekly (using clippers without a guard, not a razor) until it turns into real hair. On March 1st I'm going to get a henna pattern on my head! Might have to go razor bald for it.

Today I did one of my favorites local hikes on the reservation near where I live...Fish Point. The views and rock formations are incredible. We hiked up 1500' (to 7400' elevation) on challenging terrain to a place that used to be underwater/ocean floor many millions of years ago. I found more aquatic life fossils - pretty amazing! Am exhausted after though and legs swollen so I will elevate the rest of the evening. I felt so out of shape, but in the end I realized I did as well as everyone else who went (6 others in their 20s and 30s, 1 @ 56)...they were out of breath a lot too and complaining of tired or sore muscles from the climb. Trying to recognize how high my fitness level was before chemo...when that hike felt like a walk in the park. Soooo looking forward to getting back to that, and it will take a lot of time and effort. Have to remind myself that all my treatments will take over a year from when I had surgery to maybe finishing some reconstruction. I knew that going in.

Love and hugs to you all! xoxo

Kimmer: I went onto the Hair, Hair Hair discussion board. Based on the posts there, regrowth speeds seem to vary quite a bit, and I couldn't really get a clear sense of when the real thing first starts to come in. Sounds like it's at least several weeks after the end of the last chemo cycle. But lots of ladies are posting photos in there of very short-but-legit hair a few months after final treatment. I was heartened, also, to read that the hair doesn't grow in evenly. Patchy seems to be normal. Sounds like the hair on the back of the head often comes more quickly than on the crown. That was a relief to me because, with regrowth, I have basically nothing above my forehead, whereas I have very noticeable stubble farther back, and I was starting to feel pangs of paranoia--what if I end up bald on my crown? ;-)

Andra: That hike sounds absolutely spectacular. How cool that there are sea fossils! Being able to hold your own--even though it was hard--with the others is pretty amazing, given what your body has just come through. You WILL get back again to the place where that hike is a walk in the park for you. It will take time, but clearly you're an incredibly determined person. You'll get there.

I'm actually starting to feel a little relief from the edema, and I'm rejoicing--though I also see that the SEs don't fall away in a linear way, so I know it might creep up again before all's said and done. My ankles are still a bit swollen, but not as badly, and my legs feel less stiff. The one thing I *have* been suddenly struggling with in the past few days--and it's embarrassing--is hemorrhoids. Where did THAT come from? I wonder if it relates to the edema? I haven't been constipated in the least. But I did spend a lot of time in the car last week, back and forth to Stanford. I think the only other time in my life I've had this was when I was pregnant. Gaaah! Should make for an interesting week, given I have to travel and then sit in all-day meetings for two days. ;-)

I had hemorrhoid problems a week before B Mastectomy surgery. As if I didn't have enough to worry about! It was bad enough to seek a surgical consult from a friend/coworker who is a general surgeon - thankful I did not need surgery for it. Sorry you are both dealing with it now igay1ord and MDW. ugh.

Thanks for the encouragement MDW and Kim! I think I need to re-work things in my head and accept that my muscles/body healing will take longer than I had hoped for. Patience. I keep pushing myself even though it feels so awful. Not sure anyone else would do that, but it's part of how/who I am.

Fingers crossed for you 1gay1ord! You're almost done the dose dense crap - Yay!

Kim - I keep hearing and reading that *real* hair is much farther out than we all had hoped for. Months out. I even saw pics of someone who had red hair and it all came back grey and stayed grey (she is 2 years out now). I'm going to keep shaving my head with clippers (after this razor shave for the henna) until the stubble is real and filled in, not patchy. I think everyone is used to seeing me bald now anyway. No one, at work at least, looks at me funny anymore but I am amazed when I talk to people about how many who ask me if I did this on purpose - either to support someone else who has cancer or to make a bold statement. Maybe I should interpret that as not looking so sick/cancer-y myself!?! I'm still most bothered my eyebrows jumping ship. I have 10-15 hairs left on each side. Lashes still pretty good - just one small missing patch on each side on the bottom. Started using Latisse daily on my eyebrows, when I can remember before I go to bed.

- xo

What a compliment for you Andra - wish wish wish people thought that of me! Well, no one has seen me (except family) with no hat, but I look odd with my q-tip head. I have been told my skin on my face looks amazing, though, so that makes me feel good

Andra: I hear you about the benefits of distraction. There's so much about dealing with bc that robs us of feeling any sort of normalcy. I know that when I'm working and can get immersed in something outside of myself, my state of mind improves.

Funny about the skin thing! My skin was such a volatile mess during chemo--I had sporadic rashes and acne breakouts throughout. Now my skin is super clear, too. I wonder if chemopause shutting down the ol' ovaries and related hormonal activity leads to clearer skin in general, too. I've struggled with adult acne off and on forever.....

Just popping in to say that I am reading everyone's posts but I haven't posted much at all here except just now in the Winter Rads thread. I have been trying to live the last 3 weeks pretending to not have BC. Ha.

I had my CT today for radiation and my #7 Herceptin infusion. I have been pretty down today. I'm sure I'll snap out of it.

On a positive note, I have eyebrow stubble! Yay! You can't really see it yet but I can feel it! And there is new hair growth elsewhere on my body. Kind of weird. I am 6 weeks PLC.

Here's to a good week for everyone. Sending love to you all.

MDW sounds like a fantastic day! We have been to Napa once, and absolutely fell in love.

Amy, I am 5 weeks PFC and still no stubble anywhere, maybe by week 6 PFC there will be eyebrow stubble, it's looking pretty barren over the eyes!