Starting Chemo in October 2015

Andraxo

Yay Kim!! Hooray for having a great return to work, and for forward progress with moving plans you had to put on hold! All exciting stuff!!

I also talked with oncology about Tamoxifen, but she said I'd start it a month after radiation ends. Approximately 5 years of taking it, but depends on my hormone levels which they will monitor. Likely switch to another drug for another 5 years, so 10 total on something. ugh! That seems crazy.

Happy early birthday Amy! Yay to a night out! Looks like we will start rads around the same day. I don't have my schedule yet, but I expect it to be Feb 29th or March 1st.

I ran today. It was pretty awful, but I did it. Trying to stay proud of myself for pushing, but I have to say I am discouraged. I know I'll start to get better in March.

Have a super weekend everyone!

Andra xo

LoveMyVizsla

I've been following your group with a question here or there. I don't have to take tamoxifen, but could you look at it like taking birth control pills? I took them for decades, but because I wanted to.

So jealous you are all almost finished

ncsue927

Hello everyone.  I haven't posted in days.  I've been out of town since Wednesday; first at a work convention in National Harbor, MD and then at my brother's in PA for the rest of the weekend.  I've been tired, but my boss let me rest whenever I wanted, so it was okay.  I was a little nervous about traveling so far from home and away from my MO.  We do so come to rely on them.  I will be glad to get back to my home and my bed.  I feel so much more in control in my own environment.  I'm also so chilled.  I can't get warm.  But I don't have a fever.  I'm hoping it's just that they don't keep their house as warm as I do.

Jedrick, I know what you mean about the cold thing.  Everytime I would hear someone cough at this convenetion, I was wondering if I should put on a mask.  I just don't trust anyone to keep their germs to themselves!  But hang in there.  I've still got 5 more Taxol treatments, so I will be on here for awhile and I plan to stay with this group as I move into rads.  I want to know how everyone is doing!

Here's wishing a good week to all; successful treatments, few side effects and closer to the end.  Whatever that is.

Kimmer33

happy birthday Amy! Enjoy yourself!

Lovemyviszla, i started tamoxifen on thursday and my pharmacist said the side effects are just like birth control, dosage is once a day, etc. so far so good for me!

Andra, you will feel better, press on! Yes i am on tamox for 5 years, not sure what will happen after that.

We sold our house today! The perfect buyers came along to our realtor, and we havent even officially listed yet! So excited and relieved! We had some particular issues with our home and needed the perfect people to not care about those issues, and it happened! Wahoo...

LoveMyVizsla

Kimmer, congrats! You'll be closer to me just over the border. I'm in Anacortes.

Jclc83

That's awesome Kim. I'm so jealous. I want to sell my house but first I have to fix some things that my DIL ruined and paint of course. My big dilemma is should I get another mortgage at my age ( early 60's) and with my Dx. I really don't know what to do.

AmyBeader

congrats on the sale of your house Kimmer!

Kimmer33

Lovemyviszla we are so close! We go to Anacortes when we camp at Deception Pass, such a beautiful area!

Thanks for the congrats ladies! This house sale means a move we couldn't do last year due to my diagnosis, and a step toward our new lives.

Hope everyone has a terrific week, we have family day tomorrow, statutory long weekend here, so we get to sleep in another day!

Andraxo

Hooray Kim on the house sale! So sweet that it wasn't even formally listed yet - perfect!!

I've decided to put off my home search in Santa Fe (where I get my cancer care and where my partner lives) for another year. Best thing would be to get through my cancer tx and save up more money since I don't have a mortgage after selling my house in Colorado last April. Need to stop looking at real estate porn!! It is torturous!

So not happy about Tamoxifen in my future. I hate birth control pills. I tried them and was miserable...like I was a different person. It was awful. Maybe I need to seriously consider having my ovaries removed sooner than I thought. Sucks though, because there are so many benefits from estrogen that I still need, but I will be very unhappy if taking tamoxifen is going to feel like birth control pills. Bummed about this...no good options.

AmyBeader

So is that our only option? Either remove ovaries or Tamoxifen for 5-10 years? My inclination (and my breast surgeon's) was that it was better to keep my ovaries unless absolutely necessary to remove because of the other benefits. But I'm not too happy about all of the side effects I'm reading for the tamox. ugh.

So, I've started noticing short haircuts-thinking about what my hair will look like when it starts growing in. I love all of the pixie hair styles. Anyone see anything cute to shoot for?!

Andraxo

Amy - I'm not sure if we have other options. I worry about my risk of ovarian and uterine cancer because I'm higher risk category since I didn't have children and I didn't take birth control pills (both give you more protection, less risk). It's why I wonder if I should just have them removed. Would be awful to be breast cancer free and then get hit with another cancer. Something I think about. Anyway, I know they will start me on Tamoxifen and check my hormones along the way and if I become post-menopausal they change to a different med.

I'm not looking forward to growing out my hair. All the super cute haircuts work really well for straight hair and mine it so wavy and unruly. I spent zero time on my hair before cancer. No products, no hairdryer, no styling...just wash and go....and that suits my lifestyle best. I think I'm going to be wearing more hats growing it out than I do being bald in winter!! Ha! I am however really looking forward to the short stubble that will look like a buzzcut - that look I can rock!

DurhamGirl

AmyBeader and Andraxo...I thought that I third middle of the road option was ovarian suppression via a monthly injection and possibly some kind of endocrine therapy to go with it. I haven't fully explore that with my MO but she indicated that it would be a possibility.

I was on birth control for over 20 years and never had any issue with it-- in fact, it helped make my crazy long and irregular cycles more regular and manageable with no side effects. Although now it seems like itprobably contributed to the growth of my cancer, but who knows? Sometimes it seems like there are no right answers or easy roads to take.

Kimmer33

hi ladies!

Speaking of hair, my stubble has gotten longer, softer and white!!! LOL!!! Old man here I come!

I agree with Amy, there is the third option of ovary suppression.

Have a great day!

Kim

AmyBeader

Andra, I've heard that often when your hair grows back in it is different than before chemo, so maybe you will get straight hair!

Andraxo

Amy - I wonder if it will have some red! My sister has deep red hair and there is red on both sides of my Italian family. Most likely it will be more gray. I buzzed off the soft grey fuzzies that were growing in patches. I have a small pile that feels like dryer lint!

MDW1967

Kimmer: It's so great that your first week back to work was so positive! You sound like you're glowing. Good luck with the Tamoxifen and with getting your rads underway and then behind you. And good for you that you're moving forward with the deferred plan to sell your house and move closer in to Vancouver. I hope it sells quickly so you're not having to deal with the show-ready upkeep for too long. It's funny that you mention the sparkling water. I usually have to avoid carbonation until I'm in the 3rd week because it exacerbates one of my other least-favorite SE's--wicked heartburn. BUT as I come out of that phase, bubbly water with a splash of fruit juice is my go-to, and sipping it does seem to help get me through the no-taste phase. I'm such a bubbly water addict that I have a Soda Stream machine; before I got it, I felt so guilty for all the bottles and recycling my habit generated. ;-)

Andra: I was relieved to hear I'm not the only one with the no-taste/over-active salivation thing. It's the weirdest sensation. I do the always-snacking thing, too, to keep it at bay. Hopefully that phase is on its way out soon.

I do have a wonderful little family, and feel profoundly aware of my good fortune in them. Your partner sounds truly like a gem of a human being. I have no doubt that the beauty he still sees in you is very real--and not just for him, but for everyone who knows you. Being surrounded by such love--even when we're at our worst--is a powerful thing.

The latest from me: I haven't heard from my MO yet, but my echocardiogram result landed in my online account and it looks like all is normal. So I imagine I'll be all set to continue forward with Herceptin. I'm not entirely clear on when I'll do my first Herceptin-only infusion, but I'm guessing I'll hear from my MO's office soon.

My surgery is scheduled--it's set for March 3. That date is going to come up super fast, especially since I'll be going on a business trip for part of the week prior. I know that many here have already been through at least one mastectomy. Question about clothing for right after surgery: did anything in particular work well for you in terms of tops you could get into and out of easily? Any essential advice for surgery or post-surgery? I've never had a major surgery before, so I'm clueless. I know I'll need to sleep on my back, and thankfully we have a reclining chair for that. I know I won't be able to lift my left arm much at all for awhile. That's about all I know! ;-) Anyway, if anyone can think of anything that helped them get through it more easily, or that they wish they had done to prepare, please feel free to pass it on!

Smurfette26

MDW1967 For me personally my recovery from surgery wasn't physically too difficult. I overloaded with button up tops but found I was able to manage to pull things over my head within a few days. Even washed my hair. I had hair then. LOL. I did see see a physiotherapist twice while still in hospital and she started me on a gentle exercise routine the day after surgery. I was diligent with my exercises, had no issues and have a full range of movement. I slept sitting up on the lounge for 6 or 7 nights after I came home from hospital. I was in 3 nights which is pretty standard here in Australia. My drain was removed on day 7 and I was able to shower with it but all surgeons have different ideas. One thing I thought was interesting; I asked my surgeon when I was able to drive. He said, "Check with your insurance company as they often stipulate how long you have to wait after certain types of surgery". So my surgeon might say 4 weeks but my insurance companies policy might say 6 weeks so should I have had a claim in that time it wouldn't be covered. Feel free to ask any specific questions. Happy to help if I can.

Andraxo

MDW - Hooray for having the date set! hoping that puts you at ease to have a plan. And double hooray for your echo being normal!!

as Smurfette said...button down shirts! They will give you a Velcro front closing post-op bra that should also have drain pouches, but I hear that some people just had the pouches pinned or hooked to the bra. I bought extra velcro drain pouches on-line because I wasn't sure. What really helped me was using some super stretchy mesh stuff called "spandage" to hold the drains/pockets more securely against my abdomen/torso in the spot I wanted them (it is often used to hold big bandages on patients with burns). It really helped when I was out and about walking (which was starting day 2) and so they didn't move around at night, and also to hide them better under my clothes since I had two of them. Spandage comes in different sizes for which body part and can be found on-line.

I'd also rec you ask about an early PT visit to have someone show you what you are allowed to do early...and then also get more PT as soon as you are cleared for more activity when the drain comes out. I'm a PT so I already knew what to do exercise wise once I confirmed what I was allowed to do, but I see PT now for 'cording'/axillary web syndrome which I was unfortunate to develop after the axillary node dissection. I still have it but it has moved into my posterior rib area following a specific myofascial pattern. Thankfully it doesn't really restrict my activity or motion.

- xo

MDW1967

Smurfette: Thanks for your reply! I was going to stock up on a few button-front shirts because I hardly have any, though it's nice to hear that I might be able to get things over my head sooner than I was expecting. Since I won't be having a bilateral mastectomy, though, I'll probably be a little less encumbered. And yeah, it's actually good that I *don't* have hair to wash right now. Wow, 3 nights in hospital post-surgery is so generous! Australia has got it right. I was told it's "typically a 23 hour stay" (barring complications, of course), and that just seems so ridiculously fast. They won't even give us a full 24 hours, after they've removed a breast--or two! Thanks for the heads up on auto insurance. I wondered about that--when I'd be cleared to drive following surgery.

Andra: Thanks for the heads up on the "spandage"! I'll add it to my list of online browsing must-dos. I did a little browsing today and found shirts and tank tops where they've built little pockets in to hold drains and tubes, and I might invest in one or two. When I was at the plastic surgeon's appointment last week, his nurse gave me a couple of drain belts and mentioned I should try to find a front-closure sports bra. I will definitely ask about PT, too.

homeschool4us

MDW, Someone told me to but Target merona brand tank tips in a bigger size than normal so you can just pull them on from the bottom. Those worked great under button up flannels. Was told not to lift my arms up very high for a month. My hospital gave me a pink tight velcro wrap thing for the frst few days, and a thing they called a cami, but really was a soft vest type thing with pockets for the drains. Theu also gave me a lanyard to pin the drains to during showers. Make sure you have some large safety pins. I got by with 3 tanks, 3 flannels, and 3 pairs of pajamas with button up shirts. Target Nick and Nora brand button up pajamas are super soft and stretchy. I ended up buying several new fluffy pillows and body pillows to make nest for myself in bed as I couldn't sleep well in the recliner. My observations were that the first few days I felt like I had been run over by a truck. Sore everywhere, I couldn't even figure out how I got so sore in all my muscles! After that, it was a pretty rapid recovery. I didn't need pain meds at all. It does hurt to move certain ways, but overall it wasn't as awful as I had feared. Those dumb drains though. ..Ugh.

homeschool4us

I want to respond to everyone else's recent posts, but I am so super exhausted. I have 4 more taxols left and I fear how much more tired I can get. I am really struggling lately. 😕

Kimmer33

Hi Ladies!

Homeschool, so sorry to hear, we know how it is. Keep plugging along, you will get through this!

MDW, I so want a soda stream, does it work well? My surgery recovery was super easy. I would recommend getting a button up front or 2 yes, but I was mostly in the tank that I bought that had removable pockets on the inside for the drain. I also stepped into a lot of my tshirts if I didn't feel like wearing a button up, it was pretty simple, especially when my husband helped. In surgery, I was put in a body- sized tensor bandage and kept that on my whole week of recovery. It velcroed closed around my torso, and I often pinned the drain to it. It helped keep the swelling down, and actually felt very secure, keeping the bandages in place also. Like Smurfette, I only had my left breast off, so i could also still wash my hair in the kitchen sink. If you can, get some exercises to do from a physiotherapist that you can start a few days after surgery, I think that helped me recover faster and get my full range of motion within a month. You have to start slow though, but it really helps get you on your way to healing and keeping your muscles active during the process. You will heal a lot quicker than you think, our bodies are quite amazing!

hope you are well Andra & Smurfette!

Kimmer33

ladies!

Got my surgery date for my right prophylactic mastectomy - April 5, provided i feel well enough after rads. Excited as this will leave me 6 weeks to heal before Italy, which is plenty.

Hope everyone is having a side effect free week

Andraxo

That is great news Kim!! ....and early than you initially expected with their schedule. So happy you are moving forward with the surgery plan you want!

Aside from my muscles problem being back in full swing after steroids wore off, my other side effects are minimal this round. My legs were so swollen and sore by the end of the workday yesterday (even wearing 20-30mmhg compression hose since 10:30 am) that my 8 months pregnant friend and coworker had to help ME get up off the floor at a baby shower I attended last night.

- xo

MDW1967

Homeschool: Thank you for the advice! I did a quick stop at Marshalls and Old Navy today and found a few button-front shirts--I have to say, they're surprisingly hard to find! I do have a couple of sets of pjs with button-front shirts already, thankfully. I also found a couple of zip-front sports bras online today--I didn't own any front-closure bras at all. I'm starting to feel not totally unprepared. I'm really sorry to hear how much the Taxol is taking out of you. I hope you get your strength and energy back quickly when you finish those last rounds. It must be hard to face four more when you already feel completely exhausted.

Kimmer: I LOVE my Soda Stream. It does work really well--easy to use and Bed Bath & Beyond take the empty carbonation cartridges; they recycle them. Thank you for the advice on post-surg clothing and PT. It's so heartening to hear from everyone here that the post-surgery healing process goes quickly. In a weird way, I'm kind of eager now to get surgery over with. Congratulations on getting your prophylactic mastectomy scheduled, too! I'm so excited for you that you're headed for Italy once this is over. I feel like all of us deserve some amazing adventure like that when this is all done. Where in Italy will you be traveling?

Andra: I'm glad the other side effects aren't too bad this round, but I know the muscle and swelling issues are really hard for you. Glad you literally have people around to help pick you up off the floor!

As for me, I went into the office yesterday for the first time in quite awhile, and I'll be going in again tomorrow. It was a little tiring (partly because of the long commute), but it was so good to be out of the house and around people again.

One funny side note: this is my third week from Round 6, and I'm realizing how conditioned I had become to start dreading my next infusion right about now. I can't shake the feeling that I have to go for an infusion on Monday. I have to keep telling myself that I don't have to do it this time, and I don't fully believe it!

Kimmer33

MDW, I felt the same way about not having to have an infusion. It was like my body was expecting and it never came, and I was rejoicing! I am feeling better as each week passes, however, this week I upped my work hours to 6 hours/day, up from 4 hrs/day last week and I can really feel it. I come home and have an hour long nap every day. But I give myself permission. Have to be healthy for rads starting Monday, then my surgery. Then ITALY!!! We are heading to Rome first, then Sorrento/Amalfi Coast, then Venice and finally Siena. I am happy surgery is 6 weeks before our trip and I won't have to pack along foobs if I don't want to, and my quandry with what to do for a bathing suit being lopsided is now a non-issue. Very excited for this, I can't believe how much I hate being lopsided, I didn't actually think it would be a problem, but I don't like it.

Andra, LOL on being helped up by a pregnant woman.

MDW1967

Kimmer: I would need a nap every day, too, if I were going into work every day for 6 hours. I'm glad you're giving yourself that permission! I'm only going into work a couple of days per week and it wipes me out. Good luck with the start of your rads tomorrow!

Your Italy trip sounds spectacular! We went to Italy on our honeymoon years ago and spent time in Rome and the Amalfi Coast and Sorrento. The Amalfi Coast is one of the more beautiful places I've ever seen. I hope you enjoy every single second of the time you have there.

I'm heading into my first honest-to-God week outside my last infusion cycle tomorrow. I hope the SEs start to recede, as I'm still plagued by a few things. In the last few cycles, I started to have a little edema, and this last cycle it's been worse. I have cankles, and I swear that both of my legs are swollen, top to bottom. I'm also still having that "dead mouth" issue, and super twitchy eyelids. Hoping that my body catches on quickly that I'm not doing chemo again, and starts to behave accordingly.

Wishing everyone a great upcoming week!

DurhamGirl

MDW1967, my eyelids are SO twitchy also...I wouldn't mind if that stopped soon!

My main complaint right now is my vision, which seems to have been really affected by the chemo. My optometrist (who also went through chemo for a different cancer at the same time I did) says that the vision issues are from fatigue and that they will resolve. But in the meantime, I can barely read a book or look at a computer screen for more than a few minutes without everything going blurry and really feeling the eyestrain. That's why I haven't been posting a lot...or working, for that matter. It's hard to be an editor when you can't stare at text on a screen or on paper for more than a few minutes.

KImmer, I'm starting rads tomorrow, too. I have the simulation tomorrow, and they said if there is time they will do the first treatment. If not, they'll do the first treatment on Tuesday. I just want to get all of this started so that I can be done as soon as possible! I want to talk to my PS about scheduling a prophylactic mx on the left side...I also hate being lopsided SO much. I might have to wait until the fall, though, but I will be counting the days.

For those of you with more chemo to go, I'll be thinking about you and sending lots of positive energy, even if I don't post frequently.

Take care everyone!

Kimmer33

hey durhamgirl, rad sister!!! I just posted in the winter rads group and saw your post.

I had my sim setup 2 weeks ago, so straight into treatment 1/16. Nervous tonight...

Thoughts are with those in chemo treatment still, are we almost finished ladies??? Who still has treatments and how are you all doing?

MDW i may have to get me a soda stream. Have a terrific week this side of chemo, yay

ncsue927

Kimmer and Durhamgirl....so envious that you have finished chemo and started rads!!

I get number 8 Taxol tomorrow and then 4 more to go. But I am not doing as well on Taxol as expected. Very tired and major gut issues. And tonight I have these red spots on both my legs, a different kind of rash on both forearms, rash and swelling on my elbow and I'm starting to itch. What the hell?! All at once. And I've been in bed all weekend...possibly picked up another bug. MO started me on Cipro on Thursday and also got a Procrit shot Thursday. All weekend I have felt like I have a major case of the flu. Achey, back hurts, no energy, feel like I got hit by a beer truck.

Power on!