Starting Chemo March 2016

Mecool

Hello Group! I'm scheduled to start my treatment on Tuesday, 3/22. I'm 2 weeks out from my BMX today and so ready to just get on with the next step. Mine are all scheduled as of right now and last one is set for 8/9 if all goes as planned so seeing the light at the end of the tunnel is good for me mentally. As I try to prepare for everything, I will read back through all of these posts. My neighbor and good friend has been battling and treating Angiosarcoma for the last 6 years and while I hate that we now have cancer in common, he has been a great resource for me through all of this, even going so far as to make me lists of questions for my docs I'm set to do the adriamycen/cytoxen every other week for 8 weeks and then weekly tamoxifen for 12 weeks. So here's my first question for those of you with prior experience already....my doc mentioned that it's possible my hair could start growing back before I even finish the 12 week cycle....anyone have experience with that.

See here's the thing, I feel just about as prepared and ready to handle all that is about to happen except for the hair loss. And the funny thing is, it's not even about the fact that I won't have any hair. I absolutely hate the fact that everyone around me is going to know what's going on with me. I'm generally a very private person when it comes to this kind of thing and if I had not had to do chemo, I would have kept my diagnosis from all but close friends and family. So I'm just anxious to know how soon I can go back to a "normal" of just being me with some hair

Jonsey22

I found after the first 4-5 days of feeling unwell, I really had an appetite. Still do! Trying not to eat the fridge! I wonder if it is the body's way of saying it needs to be nourished to heal. Not on any medication, so I don't know why else that would be.

BKGameGirl

Is anyone else doing weekly infusions? I have a weekly (Taxol & Carboplatin) and an every-3rd-week regimen (every 3rd week is Herceptin and Perjeta). I am not finding that the ill feeling lasts for days, and I'm curious about others who are on the weekly infusion path as well. If I had to state a pattern (who knows, it can change, right?) it looks like Day 4 & Day 5 are my days when I feel worse but I have yet to be knocked flat on my back. The occasional compazine or ativan and routine use of Immodium and Miralax (it's a balance) are keeping me very functional. Choosing a ferociously positive attitude every day is also helping - like to the point of ridiculousness, but it is making a huge difference. I do think there is a post-steroid "crash" that makes me feel a little blue, so I'm making a Day 4 & Day 5 plan for next week to stay ridiculously scheduled and to work out on those days to combat the blues.

For those of you who are comparing and contrasting experiences while working: I am still working, in fact, as productive as ever - certainly now that all of those tests and diagnosis issues are behind me, I feel like I'm back on track work-wise. I have been working from my home office but doing all the same client work, phone calls, emails, deliverables, and etc. No chemo brain fog (I'm challenging myself every day to see if it sets in). No neuropathy in fingers or toes so far; for what it is worth, I am diligently icing those extremities during the entire Taxol infusion (in addition to the information out on the wider internet, my MO has done in-office studies and they find it reduces the risk). I am also knitting a little each day just to keep my dexterity and cognition - more as a test for myself to see how things are going. Hopefully I finish the little "Easter Bunnies" that I'm knitting so that someone can have a fun surprise.

Hair, Eyebrow & Skin check: I bought the eyebrow stencils from Sephora, they are durable & fun to use - stencil #4 works for me. Looking forward to that. My mouth seems good with frequent rinsing and use of the biotene mouthwash and toothpaste. I got the rashy face and neck pimples that others got, too -- I'm just glad they're not as inflamed as the first day they came out. I wore my hat from Suburban Turban in the UK out to dinner last night - super cute - to try it out. Today I'm wearing my straw fedora for fun.

What are your questions this week for your MO? Mine are all about magnesium and other supplements and keeping my GI tract nice and healthy in a proactive way. And the pimples...what in the world!

azrescue

Well, I could feel a migraine starting all day yesterday. I tried all the usual remedies I typically do. I have a LONG history of migraines. None of the usual remedies worked and by bedtime I had a full

blown migraine. Still continuing today. Trying to deal as best I can. But think the culprit is my head/scalp is VERY sensitive and when I took my shower I had quite a bit of hair fall out. So I guess that fun

has begun

phaila

911!!!

Hi,

For all you on TC, exactly how long from start to finish have your treatments taken?

Also did any of you ice your hands and or feet? If so do you have any tips or photos to share for those of us starting soon??? I really can't have my feet in pain I live up lots of steps and I'm stupidly overweight:(

Thanks

Vicki

BKGameGirl

Here are some pics of the DIY ice packs and the brand-name gel ice packs. I ice continuously during one of my drugs, Taxol. Link: Google Photo Album One of my previous posts goes into more detail on the ice packs if you look at my posts in this forum. Let me know if I can answer more questions I can certainly tell you about my limited experiences.

There are a few drugs with abbreviations of "T" and "C." If you are asking about Taxol and Carboplatin, my infusions have taken 1 hour each drug plus assorted bloodwork and waiting resulting in a multi-hour office infusion appointment. It's not a drive-by visit yet. Might be after I do it 16 more times...!

IndyGal35

Phalia, my nausea usually hit on day 5-6. Be sure to take your meds at the first sign of trouble. I used sublingual Zofran and an extra infusion of Emend to help. (Those puke meds can cause constipation, so I'd recommend having something on hand to take like Senekot.) Don't let yourself go more than 48 hours without a BM. I ended up with a fissure from the constant Big D/Constipation cycling. Not fun.

Finally, the steroids can cause insomnia. You can ask your MO for something if you aren't getting quality sleep. I took Ativan. It helped with sleep and a little with nausea.

Thinking of you.

MFPM

The plan's set for next Wednesday for Cytoxen and Taxotere, so I'm a nervous wreck!  The Dr. said he wants to give me the full dose of C but will give me 1/2 of the T and then the other 1/2 the following week.  Anyone ever hear of this?  I'm hoping it's to make it easier.  The next week he wants me there to check the white cell count, so this means I will be there every week until the end of July for treatment since after that blood work, round 2 will start of 6 rounds.  He's a good Dr. but jokes too much when I ask what to expect and other things which aren't appreciated at this point.  Of course none of us look forward to this or are prepared, but wishing I had more answers.  He said he'd premedicate me for nausea prior to treatment with an I.V. and know he'll prescribe meds for me at home, though tells me to eat well, anything, everything.  Any advice?  I'm just so worried.

NancyHB

Welcome to all our new members, and thanks for the updates, everyone. Hopefully I've caught up with our master list; please let me know if I've forgotten anyone, or I've made a mistake somewhere along the line. Thanks!

I'm still recovering from this darned infection. My left breast has swollen to twice its normal size, and the side and underarm area are pink/red, hot to the touch, and very, very painful. Been taking my Keflex, but not certain it's really making a difference. Saw my surgeon yesterday who didn't seem concerned. He thinks I kind of did this to myself - I ran on Friday and Saturday (first time since chemo), and my sports bra isn't super tight so there's a little "jiggle" when I run. Then, I wore my underwire bra on Saturday afternoon/evening, and all that pressure/movement coupled with the reduced immune system caused edema, which then caused the infection. Or so he thinks. He wants my MO to consider delaying my next chemo for a week. I'm really hoping that doesn't happen because I've got my life wrapped up in the current schedule, so I'm keeping my fingers crossed.

My hair started to fall out in handfuls the other day, so I buzzed down to a quarter inch. If I can make one recommendation to you all, it's this: don't shave your head bald (if you plan to do that) until the majority of your hair has fallen out (buzzing it short is a good idea, though). I learned this lesson the hard way last time. About day 14-15, your hair will start falling out because the shaft breaks away from the root, so there's nothing really holding it in your head. It doesn't happen all at once, but rather over the course of several days or a week. Just a few at first, then more and more as the days go by. At some point your scalp becomes very tender, and the little broken hairs will feel like shards of glass sort of sticking in your head. At this point you can rub your hand back-and-forth over your head and the hairs will gently fall out. Last time, I shaved a little too early (still had most of my hair but it had started to fall out) and when that tender time came, there was no hair sticking out of my head to grab on to, so the broken hair was kind of "stuck" in my scalp, and it hurt. I used a lint roller (best invention ever for getting rid of hair!) but had very little luck. It took a couple of days to get rid of the tiny hairs, and it was kind of painful.

Thinking of you all!

isnogard

Candy, Beautiful! Love it!!

Melgirl

Hi everyone. Sorry I've been absent for a few days. I decided to take a break and read a book. I love to read and since my diagnosis I have had trouble focusing on more than a few sentences at a time. But luckily I started a book and was able to focus on it this weekend!

Welcome to everyone new that I have missed. I read through all the posts. Loved the wig Jonsey! And so sorry about the infection Nancy. You know if your surgeon didn't want you to go jogging yet they should have told you that! They shouldn't just blame you! Ugh!

I see that Cyn is from Torrington CT and I'm from West Hartford! Hi neighbor!!

Someone mentioned their child getting bullied at school like my son has been. I'm so sorry. It sounds like things are calming down with your bully. But make sure you or your children report every incident! Things are quiet for my son and his bully at the moment. I sure hope it stays that way.

Tomorrow will be my second dose of AC. I dread it so much because I just started feeling better. Last Friday was a week out for me and the first day I didn't need meds for nausea. My MO is giving me additional steroids to help with nausea this time. Smells for me are really bad so I have not really gotten my appetite back.

My BMX was on 1/29 and my "breasts" still hurt so much. I can't imagine running but I have started short walks. I also started PT last Friday and I think it is helping me.

I'm thinking my hair will be coming out soon. I have mine buzzed on sides and back and long on top right now. I will probably even it up next week.

WannaCruize

phalia,

Here is the post where I shared the link I used for my DIY ice packs:

https://community.breastcancer.org/forum/69/topics...

Cin54

Hey, Melgirl neighbor, loving the weather!

Woke up this morning, day 3, like I fell off the edge of the earth. Had the Neulasta shot yesterday and felt no pain (3 Aleve 4 hrs before and 3 Aleve 4 hrs after) but had a fitful night. MO gave me steroids for taper over next 3 days so that helped. I'm hoping it doesn't just prolong the crash. I have Meniere's disease and have been in a welcomed remission since December. Rather not have that apple cart fall over!

My cat removed my sleep cap last night. A light touch, that one!

HRwinter16

Logang, I am hungry all the time too!

Nancy,

So sorry about your infection, I hope you are better soon. Thanks for the tips and info about shaving. What kind of lint roller did you use, the sticky one or the velour one?

Logang

I am also working full-time as a home health nurse. Luckily my employer is very supportive and helping keep me out of patient homes with active infections. I have felt great the last 2 days. I have been getting my walking in everyday. Thank goodness! Maybe it will counteract me eating all the time! I am anxiously awaiting the day my hair starts to go. I don't want to buzz it until it starts to fall out, but I would like to do it on a weekend.

Welcome to all the new members and good luck to everyone just starting or struggling.

phaila

I'm starting TC tomorrow morning:(

Any last minute tips?? I'm totally feeling like I'm going into this blind and clueless. Terrified

Vicki

WannaCruize

Make sure you take the steroids this evening (if they gave them for you to take at home). Try sucking on ice during the Taxotere, drink as much water as possible tonight and tomorrow, so you're ultra-hydrated before hand. I started taking colace a few days before chemo, but I think I'll add Miralax at least 1 night before, because I still had some C to deal with.

Mamalala333

Mecool,

Did your doc say anything about you getting steroids? I have the exact same regimen as you (A/C every other week for 4 rounds and then 12 weekly Taxol) and my doc didn't mention steroids. I'm wondering if our regimen doesn't need steroids, he forgot to mention it, or somehow he thought I didn't need them. I start chemo the day before you! We're in this together!

HRwinter16

good luck Phaila! Bring a shawl or something cozy and some lozenges too. X

Cin54

Vicki,

We're all with you, kid. Let us know how it went (I'm sure you will!) xxx00

Pammac47

Ok I'm set got all my supplies except wig which im still unsure of. My gosh this crap is expensive just in supplies. Anyway my mets tests came back better than expected, so im going to fight. I'd rather focus on that, some might think not so great, but I was expecting worse!!! Anyway port goes in tomorrow so I've cleaned my house, had dogs bathed, cleaned yard, stocked up supplies, food and drinks. Today is St Pattys Day and I'm going to have a few as its a tradition. Tomorrow my port gets installed. On 3/22, I start chemo for 3 hrs and return on 3/23 for iv fluids and neulasta injection. Begin with AC for 8 weeks at 2wk intervals. Feeling good today. Hugs and well wishes to all.

Melgirl

Have a great day everyone!

HolaSandy

Vicki,

Thinking of you today and hoping that your nerves have calmed a little. Don't be afraid to ask your nurses for an Ativan or something to take the edge off

Wishing everyone a good day with minimal SEs!!

Kristyn

phaila

I was crying and they asked me if I wanted to go through with chemo. I was like you mean I dont have too...

The actual chemo was event-less. Changing caps was a distraction. I iced hands and feet so hoping for no tingles.

So what is my future looking like? When should I expect all the chemo gifts like nausea, fatigue, taste changes etc... I'm dreading this new chemo life:(

Vicki

NancyHB

phalia - sounds like you had a challenging time before your first chemo today. It's really scary going in to something like this, not knowing what it's going to be like, wondering about the side effects and how you'll feel. I cried the first time, too, because for some reason at that moment it all became real and I was scared. My doctor asked me the same thing yours did, too - Did I want to do this? And we had a long talk about how every step in the treatment process is my choice. He gave me the options, but I had to choose to do the treatment. And he told me again why he recommended my treatment, and I told him again why I chose to do it, and I felt much better. As though I had some control in this ugly mess. I hope you're feeling a little better, and maybe more empowered, now that the first treatment is behind you.

Everyone is different, and not everyone gets every side effect. If you do, though, you might start seeing some of those side effects tomorrow. The taste and smell changes usually happen in a day or two, same with the fatigue. I've never had serious nauseau or vomiting. Constipation usually happens right away, so make sure you're hydrating well now. Remember, though - whatever side effects you have will get better in several days, and you're very likely to have at least a few good days of "feeling normal" before your next treatment.

Sending hugs and positive energy to you today.

phaila

thank you

Italychick

phaila one down! Good for you for hanging tough even though you were scared! You've got this!

Jonsey22

Vicki, well done girl! You did it and all is okay! One down. I had TC as well. Day 1-3 for me I didn't feel like eating, taste was bad and I struggled with constipation. Day 4 I slept all day and day 5 I started to feel better. After that, I just have skin rashes, some bad taste issues (but much less), sore fingers (I didn't ice), but I feel really well. Hope you have an easy first few days. You did it and are doing it. It will seem so much better once you know what to expect. Be patient withbyourselfnover the first few days.

Candy

Jonsey22

Nancy, how is the infection. I have been thinking about you and wondering how you are doing.

phaila

thank you candy😊

Do you think I should take my nausea medicine now or when I feel sick? I'm not a very good puker! At all plus I have throat problems.

I'm glad you're doing ok! Are you on your second treatment already? Good luck

Vicki

I'm actually sitting here with my ridiculous penguin cap on. Last one of the day. I don't think it's going to work. My hair is thicker then I thought and I'm not sure my scalp got cold enough