Starting Chemo in October 2015

Durhamgirl, what kind of prosthesis do you have? Right now, I just have the cotton stuffed one, and a prefilled bra from tlcdirect. The cotton one is always out of olace, and the prefilled gets too perky. Lol. All bras cause chest wall lymphedema for me.

Kimmer, I agree about being flatchested. I had (still have one I guess) very large breasts before and never liked them. Flat sounds kind of nice. The initial DIEP flap surgery sounds so painful and so long. And then to think about more touch up surgeries. Yikes. I also need a prosthesis for swimming and then I guess a special swimming suit as well to fit it?

Amy, yes, we homeschool from K all the way to graduation. We do use online curriculum for the most part. Monarch for high school. Our oldest will be 18 next week and our youngest just turned 2.

Andra, thanks for the recommendation on the flat chested thread! I'm going to go read it.

I'm jealous that so many of you are about done with chemo! Please keep coming back here to talk!

Amy - lately I've been eating lentil or hummus chips that are spicy - one is a spicy red pepper, the other is sriracha. Feel better about eating those than regular chips (not something I usually eat). I actually find them in the food section of TJMaxx and tonight I went out and bought 3 bags of each to get me through the rest of chemo since the metallic taste and some nausea already hit today.

Kim - I don't know if the magnesium needs to be split up. I don't think so, but since the recommendation I was given for my muscles was half that amount, I am splitting it and just taking a second dose at night. I only take about half the rec amount of L-glutamine for neuropathy intervention too because I'm too lazy (?) annoyed (?) to take a second dose, so we'll see if I continue with a second dose of Mg. I just don't like taking anything, not even vitamins in my pre-cancer life, and having to take anything more than once per day is even worse! Not sure how I will take Tamoxifen daily. If having my uterus and ovaries removed means no daily tamoxifen, that will seriously increase my thoughts on having that surgery sooner.

Homeschool - I think we can all stay on this thread as long as we want! I figure we can use it right through radiation and upcoming surgeries whether primary or reconstructive, without having to start a new thread. I'm sure there are other threads for each of those topics, but I love our group! For me it won't end at last chemo.

Durhamgirl - oh french fries! If I smell them, I would likely give in to them now (though a rarity to eat them pre-cancer). Even better with cheese and green chile as they are often offered here in the SW. Mmmmmm!

You're right about needing to use a weighted silicone breast prosthesis if you were large breasted and only had one sided mastectomy. The weight needs to be balanced or you can get a lot of back, flank, and/or shoulder pain...affects posture as you mentioned. I've seen this in therapy and our prosthetics/orthotics clinic that is run our of our therapy dept. It throws everything off to be light on one side and heavy on the other. With bilateral mastectomy you can always go with lightweight (foam, microbead - which are awesome! etc) since that will be balanced as light on both sides.

Oh, and going totally flat chested in public despite how small I was, was a little weird at first. Winter clothes are so bulky it doesn't matter now, but I was still in more form fitting summer clothes late September and early October when it was still a bit warm. I was oddly a little self conscious. You THINK people notice, but they likely do not...it's all in your (my) head! I can imagine that coming from being large breasted it might be even more weird at first. Of course, being openly bald in public totally trumps the flat chested thing. hahaha!! People definitely stare at the baldy - but mostly young people/teens. I think I even scared a few! Seems like old people don't even notice though....which is nice.

Sleep well tonight everyone! I'm still rocking steroids, so we'll see what that means for me.

- Andra xo

With Paget's and a lump that could be seen before chemo because there was not a lot of boob to hide in as well as having another one in a different part of the breast, there is no way they'd do a lumpectomy only, AmyBeader. If it had been possible I might have considered this option just because it would have healed faster, not because I'm overly fond of my boobs. I always wanted small ones, just a bit more than a nipple and then I got these bulbous shaped ones that looked great on my mum, who has alway had a bit more weight to fill them nicely, but look rather sad on sporty me, especially after nursing my three boys.

For starters I'll go flat, homeschool4us. I am reading that thread already mentioned to get an idea what I will have to face. There is a good chance I'll be happy with the ease of not needing any special stuff and not care about bras and foobs and stuff since I don't expect a drastic change in appearance as I will even have a bit of decolleté left from my pecs - surgeons words, not mine. I expect to go right back into my usual sport clothing and not many people to even notice the difference.

If that all works out I'll spare myself additional surgery. Though, in all fairness, I just turned 58, never was the girly type and am definitely postmenopausal, so my outlook might be a bit more relaxed that that of the younger and beautiful women I saw on facebook.

Durhamgirl and Andra, thanks for the info on why I should get a prosthesis soon. I have shoulder and neck pain right now on my heavy side have always attributed it to my port. It makes more sense that it is from being very lopsided. My intact breast is a 38DD.

Andra, I am so the same way about taking meds and vitamins. I just won't do it. I have no real idea why. Laziness or a unrealized fear of putting weird stuff in my body? No idea but I have always been that way. One thing I will take meds for is nausea. I took those meds on AC religiously because I hate being nauseous. For the bad aches I get now with taxol, I really hesitate to take ibuprofen. I only take it if I am writhing in pain. My my MO encourages me to take it as much as I need! They also want me to take b6 for neuropathy prevention and I take it like once a week. Why??

Jedric, I will pretty much do the same I think. I'll get breast number 2 removed and go flat for awhile and see how it goes. If I want to do recon later, hopefully I still can.

Ncsue, I got the mouth sores soooo bad on AC too. The first few cycles of taxol, I got about 5 sores in my mouth. But.....they stayed small and never got too painful. It was strange. I got another this cycle but it stayed small again and was gone in 2 days. I hope that is the case for you as well. I think the sores were the worst part of AC for me too.

Crappy sleep - but more because of hot flashes and muscle pain than the steroids keeping me awake. Hope everyone else slept better than I did!

So sorry MDW about your appts yesterday. I hope you can get all the testing done quickly in order to make a decision so your brain can rest a bit and not run through 'what if' scenarios in your head. It's so hard to function with that kind of mental distraction.

Homeschool - I took 4 different supplements this morning (3 were for neuropathy prevention). Hate taking them every time. Can't wait to ditch them all soon. I usually eat to so well and have such a high pain tolerance that I so rarely think I need to take anything for any problem. Now I have a big bag of 'just in case" medicines from all of the cancer treatment....pain meds, anti-emetics, anti-anxiety, steroids, antibiotics, allergic reaction stuff, and a boatload of OTC things for diarrhea or constipation. It is ridiculous!

Jedrik - I doubt anyone would notice in sporty clothes. I'm super sporty and athletic and no one blinks at my flat chest. It's nice that it will be close to a year of being flat before I'd even be able to truly consider any future reconstruction anyway. If I want to wear something with foam boobs one particular day, I can, and that is fine with me now! Sometimes I still need sports bras though, so I don't chafe my numb nipples against my shirt with sports.

NCSue - sorry about the mouth sores. ugh It's so hard to enjoy food with them. Hope they heal very quickly. I'm waiting to see if I get any this round. I didn't get any last round so I'm hopeful.

Off to eat some spicy snacks. Working from home, but clearly not getting much done! I don't want to work for a while. Want some time to just 'be'.

- Andra xo

MDW-I am sorry your appointment didn't go well. I know that the not knowing/limbo between the biopsy and path report (which came in two phases, with an MRI and then another MRI guided biopsy in the middle!) was nearly unbearable. Once I had a plan, I felt much better. Can you get the tests done soon?

I did read that you shouldn't eat your favorite foods while on chemo because it can ruin your tastes for them forever! So no Chipotle or guacamole for me until the metal mouth is completely gone. I think I will try some of Andra's spicy snacks!

AmyBeader...you know, I had forgotten that I had some of that magic mouthwash in the fridge until just a day or so ago. I hate numbing my whole mouth so I just started putting it on the sore. It has worked pretty well. And it seems to be getting better.

MDW, I'm so sorry your appointment didn't go well. All this crap gets so frustrating and disappointing at times. It's hard not to get discouraged. I hope you get your tests scheduled quickly and get some final answers.

Andraxo, I totally get the whole medicine thing. I hate to take meds and only take the absolute necessities. I have to take them at night before bed as it is the only time of the day I seem to be able to remember to take meds. If I have something I have to take twice a day, it just doesn't happen. I feel like one of those really old people with a whole bedside table full of prescription bottles. I've never had so many prescription drugs and OTC stuff in my life!!

Jedrik, I've seriously thought about the flat thing, but I just don't know. I'm already tired of looking at the scar I have. I want to see something more "normal". But it sounds like it would be a good thing for you. Sure would be easier on the body, it seems.

Here's wishing good days for everyone!!

Good morning, ladies,

this cycle, the fifth of six, definitely takes a bit more out of me than the ones before. I'm really tired and still wake up in the wee hours. All other SEs are benign so far, but it's still early days. I'm so ready for chemo to be over and the surgery stuff is taking over my thoughts. I might be a bit obsessive, but planning helps me to keep calm and functional.

Thanks for your reassuring words about the sporty flat look, Andra. I really hope that it could be a new normal for me as that would be easiest.

ncsue, I sure hope you'll find and get a look that will help you being happy in your body again. It's so difficult to feel at home in it after cancer has taken all that natural trust in it away, anyway.

It's great you could schedule the appointments for the MRI so fast, MDW1967. A week of uncertainty is enough to bear. To have to combine this with crashing with a friend sound like a bit of fun, actually. I sure hope it will be.

BTW, I don't really feel I'll be spoiling my appetite for favourite foods by trying them on chemo, Amy Beader, but since those steroids make me feel like I need the perfect food to be sated and happy now, instantly, I try a lot of foods and dishes I don't usually indulge in - enough men in the house to finish what doesn't agree with me, so it's not as bad as it sounds. To get to the point: I always believed I have cravings for a reason, that my body is asking for something lacking in my diet.

It's so weird to have this messed up by chemo/steroids - or not? The one thing I crave most and which does agree with me at any time are nuts, mostly brazil nuts, almonds, and walnuts, but I even add shredded coconut (is that even a nut?) to my oats, banana, and milk breakfast. Lots of minerals and healthy fats in those things, so they might do me some good if I can keep the weight gain in check. I was glad to be able to stay within the weight range for chemo dosage, if only by a bit.

Have a good day, all.

Anyone have high levels of LDH? My level is at 567, which is more than double what it should be. I've read that this can be good (chemo is killing off cells that my liver is processing) or bad (cancer is spreading). Anyone else seen high levels of LDH during chemo? Have a call out to the doctor, but it usually takes a day or so before I get a call back. Thank you!

Hmmmm Ag23. When I go for appts and they check my labs, no one ever mentions my LDH as something to be concerned about or check. All I usually get is a comment about how my labs "look" in general (such as "good"), but then I ask for the specific numbers for my white and red counts etc (especially since I don't get Neulasta) and lately I ask for a copy. They only run a CBC and a Chem panel. I just pulled out my copy of my labs from Jan 5th and LDH isn't on the list. I am curious what it could mean or if anything to be concerned about. Hope not! I hope you also get answers from them soon!

Good morning, everyone!

This morning, I made an egg and cheese bagel sandwich that actually tasted like an egg and cheese bagel sandwich! Enjoying these small triumphs while I can.

Jedrik, I'm sorry that this round is taking more out of you. I know what you mean--it definitely seems to get harder. I hope you're able to get better rest soon. I agree--it will be fun to crash with my friends! I put a note out to a few folks who live near the facility and had an immediate offer of a place to stay. I'll get to visit two terrific ladies I haven't seen since right around my diagnosis last year, and their adorable little girls. I've spent so much time alone since starting chemo--it's a treat anytime I get to see people. They're even going to cook me breakfast the next day.

It's funny, I have cravings for nuts as well. I don't eat them unless it's very late in the cycle because they might exacerbate GI issues. My weakness is pistachios, though I also love almonds and cashews.

Andra, you are an inspiration! Running 6 miles at any time would inspire me, but a couple days after an infusion? That's next level, superheroic stuff. Brava! As the Day 3 yuckiness starts to seep in, I hope the side effects take it easy on you.

Ag23, I checked a copy of my latest test results--it doesn't look like LDH levels is in the panels that are run for me. I hope you get some good guidance from your doctor on the high result!

Kimmer--yay for you for being able to get back to work!!! It's really hard suddenly being yanked out of your normal routines and missing out on seeing people you care about. And while I have continued to work (from home), I do take big chunks of time off. The week of infusion, I take the whole week off, and as the bounce-back has gotten harder, I sometimes take a day or two the following week. On most of the days I work, I wouldn't say I'm anywhere near full strength, either.

ncsue, yes, I think I will be exhausted, but the first 2 weeks I am doing a gradual "re-entry" to work, 4 hrs/day the first week, then 6 hrs/day the second week. Hopefully by the third week I will be up to full time, but that's also the week I start rads, so will see how it goes. I got my SIM appointment for Jan 29, it's apparently 2 hrs long - looking forward to getting this next treatment started.

Andra, look at the bright side of rads - you will be with your sweety for 6 weeks straight! Yay!

MDW, your signature doesn't show your diagnosis or treatment, where are you at with treatment? And so great you can taste again! Yay!

Kimmer, glad you are making plans to get back to work! A step to normalcy!

Ncsue, glad the mouth sore is almost gone!!

MDW, I'm glad you are back to work and into a routine as well.

I had taxol #5 today. And guess what??My port worked beautifully!! I asked my mom if I could cancel my prt check and she said yes! Looking forward to the steroid energy tomorrow.

Signature help needed!

I finally got around to going into my profile to provide my diagnosis & treatment info in my signature, and I have no idea how to get the formatting to work. In Settings, the Signature line provides just a tiny field to type in, and no ability to format or even to do a line break. How did you ladies set up your signatures???

Feeling triumphant because I finally worked my way through the fairly byzantine process of getting all my DX and Treatment info into my Signature line--woohoo! KImmer: sorry it took so long to get around to that. I know the sig info is a nice shorthand for keeping track of where folks are in their treatments. I just had an embarrassingly hard time figuring out how to get my info to show up!

Also feeling triumphant because, inspired by Andra's 6-mile run the other day, plus a break in our rainy weather here today, I just got back from a 3-ish mile walk. It felt great to be out in the sunshine and moving my body a little.

Now I'm going to see if I can complete this triumph trifecta with a trip to Chipotle for lunch. I'm craving a sofritas bowl, big-time...I think it's time to just give in. e.coli risk be damned! ;-)

TinaB71, I'm so glad to hear your first Taxol treatment went easily and so far, you haven't had any major side effects. That is always great news!

Cheers, ladies! Wishing everyone a great weekend ahead.