Starting Chemo in October 2015

Thanks Jclc! I worried about Rhabdo initially (something PTs always consider when we see patients with bad muscle pain), but it would have shown up on my labs.

Amy - I with you in mostly voicing the positive. My boyfriend/partner hears the bad stuff on days it is obvious I'm hurting in some way, but I'm really trying to shield him from it. I don't even want to hear me when I voice the bad, so I try not to make anyone else hear me either. Gotta stay positive.

I am also eating whatever my body tells me it wants during chemo. Usually I'm vegetarian, but I'm craving meat so I have some now. I still mostly eat fruit and veggies and egg whites, but I'm having a lot of spicy snacks because they cover the bad taste in my mouth even though it is short lived.

My eyebrows are at about 50% and going fast. Dang. Was hopeful the get through chemo with brows. I've gotten better at filling them in a little with make-up though (using make-up is new for me). Lashes are great! - but I hear they may fall out after chemo is done.

It was nice to look back though pictures from the year to make an album. Crazy to see the hikes I did with drains in and during the first two rounds of chemo - when it was still hiking weather.

EVERY day I have a moment that I realize I'm bald...as if I'm seeing it for the first time. Somehow I briefly forget. Comical!

CIPN?

Thanks!

Hi everyone! Well, I'm on Day 6 of round 5...feeling okay for the most part, just tired. Seems I can't escape the diarrhea though...started this morning. I'm hoping it won't be too bad this round. I'm of two minds...on the one hand, I should stick to the BRAT diet (bananas, rice, applesauce, toast) when I know my stomach is off. But, on the other hand, if I'm going to have some diarrhea regardless of what I eat, maybe I should just eat whatever I want (within reason, of course...) and at least enjoy eating a little bit...

Andra, I tried to friend you on FB, but there is no option on your page to do it. I sent you a message there.

Amy, there are 4 Amy Sims in Georgia. I'm not sure which is you!

If anyone wants to friend me, I am Christina Quick in Michigan. My profile pic is of my 2 year old son in grey striped jammies.

My muscles feel sooooo much better today. Why? Because I'm soooo jacked up on steroids from chemo round #5 which was this morning. I doubt you will every hear me say this again but....Yay! I get to take steroids another day! Hoping it helps long term and that I don't rebound back the same muscle symptoms after.

Sorry MDW that you go to such dark places post steroid high. Not a good place to be (I was there last week). Sending you some positive energy! Also, surgery decisions can be hard. I feel like surgery was the easy part in terms of treatment. Aside from post-anesthesia fuzziness, no big drugs in your system like chemo. I also had not had major surgery before bilateral mastectomy. Losing the entire cancer breast was an easy choice. My little tumor was hiding out in one of my many fibroadenomas and wasn't detectable on mammo because of the dense fibrous tissue....not even on the mammo after biopsy with a titanium marker in it! I opted for bilateral b/c there were cysts in the other breast (no cancer) and frankly I wanted to be symmetrical through it all (seemed easier, and it has been). I was small so just adding an extra layer of foam in my bras makes me look pretty much like I did before, no prosthesis needed. My reconstruction options are also limited to just fat grafting. No implants going into radiated tissue and can't consider any muscle transfers because I'm way too active. Thankful I was a candidate for nipple sparing mastetomies, so even though they are numb.

Sorry about the big D many are experiencing each round. So awful. I hope it goes away quickly and you can enjoy whatever you want to eat soon!

Met with Radiation Oncologist today. pretty much the same plan as Kim...get mapped 2 weeks after last chemo, then start rads at 4 weeks after last chemo. I'll have 28 txs total, starting around March 1st and going 5 days/week until done. No restrictions on exercise (of course I always ask) except for swimming because of the likely skin issue.

Started taking magnesium for my muscles, but even better if it also ends up helping with the hot flashes.

Happy to get connected via FB Homeschool and Amy!

Hope everyone has a great week despite the annoying chemo side effects!

- Andra xo

MDW, I too think I get depressed when the steroids wear off. I had never attributed it to that, but I bet the timing fits. Otherwise, I try not to think about my prognosis too much. If I do, I go down the road of no hope. I am so afraid of going through those awful feelings again that I had when I was first diagnosed. I think I hysterically cried every day for a month. I was pregnant at the time so I am guessing that contributed to the menal meltdown. So, I now I try to convince myself that I would be ok with the worst news, that my cancer has spread and there is nothing they can do for me. Of course, trying to make myself ok with this is not really working. I have a really hard time thinking positively at all about my future, so I try not to think about it at all. It works for a few days ad then I go there again.

Speaking of positive things though, I have 8 more rounds of taxol left and then have a 3-5 week break before radiation. So, we booked a trip to Florida! We are taking the kids to Universal to see the Harry Potter stuff. We plan on being gone just over 3 weeks, that's as long as we can get away because of the herceptin infusions. We actually had this trip planned for last fall, but had to cancel because of my surgery. I have already started packing our travel trailer! !

Andra, so glad to hear your muscles are feeling better today! Big yay for steroids helping with that--and I hope it does help longer-term, too! I hope all goes well following your Round 5 today.

Thank you for sharing your own surgery story. My best friend from high school went through the BC journey several years ago (I think she just hit the 5-year since treatment mark) and said the same about surgery being the easier part of treatment. At least once it's done, you start recovering, and the trajectory is positive (assuming no post-surgical complications of course); it's not the dragged-out torture of chemo rounds.

It sounds like you rolled with your mastectomy pretty well, too, which is awesome! You have such a great attitude. I think part of my anxiety is that I have larger breasts, so if I had to do the mastectomy, I'd either be very asymmetrical until I could do full reconstruction, or I'd have to do a bilateral mastectomy for symmetry's sake, which feels a little overwhelming. I know neither option is the end of the world, and I'll get through whatever I have to. But as I've gone through this chemo hell, I realize I've been clinging to the idea of a lumpectomy (with a breast reduction, possibly) like some kind of life raft, but that just might not be the outcome. In any event, I'm glad these appointments are tomorrow; I just want to know what's ahead of me, one way or another.

I wish you good luck with the upcoming radiation! It's great that there are no exercise restrictions (other than swimming). It seems like rads are part of just about everyone's treatment path. I don't recall either my MO or the surgical onc ever bringing radiation up with me, but I wonder if it's also in my future....

Hi all,

topped up for round number five. I've got the distinct feeling that it's a good thing I'm next to done with this as I'm started to get frayed at the ends, specially with waking up too early every night.

Andra, no superstar here, just your run of the mill randonneur. I needed that reminder that chemo would have to be adjusted once I gained too much weight. Same range here and I got well inside just in time riding a bit more, eating less and drinking lemon water. Naturally I can be that good because all the christmas sweeties and cookies habe been annihilated and the weather favored me. Glad to read the cortison has been taking away your pain and made you mobile again. Keeping my fingers crossed here it will stay that way once it's out of the system. Hiking with drains, that's seriously badass. =:-o Thinking of this will for sure getting me out again that much earlier.

I had a pretty decent diet before chemo hit, too, AmyBeader. Since cortison messed with me appetite and I seem to be in need of comfort food every once in a while I got used to eating stuff I'd not normally or sparingly touch. But hey, it does seem to keep my blood values within acceptable range and hopefully there is an end in sight. Keeping fingers crossed for your CIPN not getting any worse and resolving itself asap once chemo is done.

So sorry you dropped into that cortison withdrawal hole, Meara. I'm always scared I'll reach the end of my line pretty fast when I get to this place and prefer to be let to suffer alone and not be forced to be nice and attentive. Fortunately I can follow some tv-series and knit while watching. I'll be thinking of you deciding today about what kind of surgery to do. Hopefully the whole team can come to a decission that pleases you and gives you a good prognosis, too.

DurhamGirl: For me white flour bread, cakes, and cookies make matters worse while dealing with chemo-upset intestines while meat does not. Also it seems to keep my blood values in the ball park, so for me this is a no brainer even though I'm next to vegetarian aiming at vegan in normal life.

So happy for you homeschool4us, that you are finally getting to do that holiday you planned before the big C put paid to it. First steps to normal, yay! Maybe your medical team will help you to feel more positive about you future tomorrow, I wish for it to be so. Knowledge always trumps fear, does it not?

Thanks Andra for the info, I missed that link that Amy posted. I plan to talk to my RO about supplements when I get started on rads.

Your spirits seem to be high, Andra, super good to read that you are getting out and about. I have one more Taxol next Monday, and the light at the end of the tunnel is super bright for me today! Looking ahead at heading back to work Feb. 1 which I am desperate to do, I miss it terribly, and my co-workers. Rads should start Feb. 15 and go for 16 treatments, and then ---- home free!?!?!?

I have made the decision to have my right breast removed (here in Canada, or at least at my hospital, they won't remove both if just one of them has cancer), so will meet with my surgeon towards the end of January. I am not liking always having to worry about a foob in my bra, and would love to not have to think about it - being lopsided is just weird and seeing my right boob just reminds me of what I lost, and the potential for cancer to live in there also. I just don't want to do it.

I meet my oncologist tomorrow for my pre-chemo appointment and will ask her about when I will see her again - hopefully not for a long time!

Have a terrific day of resting and healing ladies!

Kim

Kim - yes, my spirits are definitely up today! Steroids a big factor, but I was just outside for 70 minutes exercising with my dogs. Yay! Super slow walk/jog but it is sunny and I had still had a big smile on my face. Staying optimistic that I won't rebound mentally or physically when the steroids are gone. Some nausea today, but not bad enough to take anything for it.

Hooray for your last Taxol coming up...and returning to work! woohoo! And...what sounds like a short course of radiation! (compared to what they seem to do in the US)

I'm very happy with my decision to have both breasts removed, but I know it's not the right choice for everyone. Supposedly it doesn't change anything for outcome and life expectancy etc, but I personally feel better about it mentally and it is so easy for getting dressed and wearing clothes. No matter what bra type and foam configuration I choose, I'm even and clothes fit well. It is a bit weird not having breasts and just having nipples and scars (feel bad for my partner too) but I don't really think about it except for when I'm naked staring at myself in the mirror or when he is touching me. When I'm dressed I feel and look just like I did before cancer aside from being bald with funny lame eyebrows! I can still laugh about it though, so I guess that is good.

If they usually won't remove a non-cancerous breast by patient choice in Canada, it is something they would still consider but you have to pay for out of pocket and maybe wait longer? Or would you have to travel someplace else for it? Curious how the Canadian system works. Hope the discussion about it goes well.

onward and upward....

xo

homeschool, you and I are in the same boat. I also had a unilateral. My surgeon did not believe in taking a healthy breast, and I think I was in too much shock to argue. I don't love being lopsided, but the prosthesis actually looks very real and I don't think about it during the day. I'm having a hard time thinking about reconstruction. It seems like a lot to go through. I have to get through radiation first anyway. At this point, I think I would rather them take the other breast then deal with multiple surgeries for reconstruction.

So many decisions...

Kimmer, are you having hypo-fractionated whole breast radiation

Andra: Yay for steroids! I hurt my knee a few days ago (twisted it on the stairs, I think) but it feels much better today after 3 doses! I hope your muscles continue to improve. I agree with MDW about your positive attitude. I really enjoy reading your posts. Your mexican meal sounds yummy-glad you are getting to eat something tasty!

MDW: I am with you on the dark thoughts. I seem to have a crying session somewhere day 5-6 when I'm feeling my worst, and I bet the steroid let-down contributes along with the neulasta shot. How did your appointments go today?

Homeschool: the Florida trip will be great for you and your whole family. What a great way to step away from cancer for a while and enjoy something together. I saw you FB post about your kids-you have such a wide range of ages! I bet it is challenging keeping all of their curriculum organized. Do you homeschool your high schooler too? On-line classes?

Kim: here's the link to the magnesium again: http://www.amazon.com/dp/B00NRQ06VM/ref=sr_ph?ie=UTF8&qid=1452636757&sr=1&keywords=magnesium

I started out slowly because I was worried about the laxative side effects, but I have not been bothered by them. I was advised to take 800 mg, so I am doing 400 in the morning and 400 in the evening starting today.

Jedrik, DurhamGirl, Kim: I was glad to have the option of a lumpectomy, but I know that if the cancer comes back I will opt for the bilateral mx. Is there any way you could do lx with a reduction in the other breast to match? I love the idea of the nipple sparing that Andra got, but I don't think that would be an option for me as my lump was just above my nipple. My surgeon had to take some of the skin just above it, and now it is flatter and pulled up higher than the other side. I am not sure that I would do reconstruction either, unless it was with my own tissue. (DIEP) . I was pretty small before I breastfed my kids, and now I'm a c cup which is really bigger than I'd like. I don't think I'd mind be flat!

I had round 5 today, and my MO reduced my Taxotere again by 10% to 70%, and he reduced the Carboplatin to 70% as well. He had not previously done anything with the Carboplatin, but he said that neuropathy can be a side effect of that drug as well, and the neuropathy can be permanent. If it still isn't better by next round, we will drop them both and just do Herceptin.

Trying to get laundry done today and tomorrow before the bad SEs set in. And making a list of possible meals that the kids can prepare. I think they are hoping I will not hold them to it- ha, wrong!

what are your favorite spicy snacks Andra? I need some new things to try