Starting Chemo in October 2015

I almost forgot to update about my scans! The doctor said my chest looks great, my liver has the exact same spot as before, which is good. It means it is almost surely a hemangioma. They did see a tiny spot on my hip, but it did not show up on both the CT and the bone scan so they are thinking it is scarring and not cancer. In any case they aren't worrying about it now, will maybe look again 6 months. So, I can move on to rads.

The only thing that threw me for a loop was that theu want to discuss anti hormone therapy. I am er negative and pr positive at only 9 perecent. I thought it wasn't a concern at all. They are pulling back up my mastectomy tissue and testing for hormone status since my original diagnosis came from my biopsy. She said that it may or may not help me, but we should probably seriously consider it just in my case with so much lymph node involvement just in case it has some benefit. I don't understand why

Oh Durhamgirl, I was thinking of Koby just the other day and meant to ask you about him. This is just heartbreaking news. So unfair. I cannot imagine. They will continue to be in my prayers.

hi everyone!

I have been busy with life, so getting a chance to get onto these boards has become slim to none. Hope all of you are doing well!

Autumn, i had most of my side effects after rads were finished, and now almost 4 weeks post rads, side effects are still not gone - itching itching itching are the worst parts. My armpit went black and peeled this last week but healing well now. I also had extreme fatigue the first week of rads that got less each week and felt amazing my last week of rads. I have zero fatigue now and only feel better each and every day.

I too have thoughts about my future, and when i hear a time frame "in 5 years, in 10 years" in whatever context, i catch myself wondering if i will be around. It's awful to think that, and i know i shouldnt, we must think only positive thoughts, so is this wrong of me? Do i need counselling? Am i thinking normal thoughts? I really feel that PTSD applies to me, maybe i need to talk with someone.

On the bright side, i walked with my husband last night without a scarf on my head for the first time and i actually felt the wind in my hair for the first time in months! I just about started crying right there on the trail! I also said to him that i truly feel like i never did chemo or rads, that is how amazing i am feeling these days - so yay, onward and upward! Just need this hair to grow in a little more - it can stop growing on the legs and pits though

Hi there,

I am keeping up with you all, just a bit too busy to write much. I love hearing you are doing mostly well and everybody is getting moments where cancer is not a part of life and thoughts.

I'm one of those with minimaly expressed estrogen receptors (2%), no progesteron receptors and Her2-overexpressed (4) in the DCIS, no ER in IDC. At first my oncologist said that was negligible and of no impact for therapy. After surgery he said I should do five years of anti hormonal therapy as per guideline. (You might remember I was p*ssed as hell since I hat suprises and the diagnose had been there from the start.) So far I have not had to decide because AHT is processed in the liver and mine hasn't quite recovered from chemo to start. Or maybe my oncologist accepted my wrath as the final answer. ;-)

Ever since then I have done some research whenever I felt mentally fresh enough to do this. I'm a lay woman, it's hard for me to read and understand this stuff, but I need to as I'm the one to make the decission whether to do it or not. One article gives a great overview on what we are dealing with: http://www.cancertreatmentreviews.com/article/S030...

From what I gathered minimal expression of ER and no PrR combined with Her2 overexpressed is not a type that benefits from AHT unless directly combined with Herceptin as the pathways of Her2 and estrogen response interact. So there might be no point to take anti estrogenes or aromatase inihibitors any longer than getting herceptin. Anyway, read this, discuss with someone who should know this much better than I do.

I'll write some more soon. Healing thoughts for those who need them, you are on my mind,

Gabriele

Hello everyone,

Been off for a while and dropping by to say hi and catch up. Home School , so glad of your results and Durham, I will be praying for Koby.

Still tired at end of day but hope to ditch the wig in a few weeks!

What Andra said--so many posts! It made me happy to see everyone checking in and know that everyone is ok.

Kimmer: It's awesome to hear that you're feeling so good. To feel almost as though you never had chemo or rads is huge. And the walk with your husband, feeling the wind in your hair sounded amazing. I really can't wait for that day for myself. If the hair growth on my crown and front hairline would just catch up to the growth on the back and sides of my head, I'd finally feel comfortable going hatless, I think.

As for the difficulty looking toward the future--wondering if you'll be here or not--I think that's totally reasonable given what you've just come through. We need to be gentle with ourselves because we've all just dealt with some serious s***, and one of the ways to do that is to not judge ourselves when we can't always think positively. As for counseling, it might be worth considering. I had my first session last week with someone and it went well. I like the therapist so far. It felt good to unload without worrying about the other person's feelings or reaction.

Jedrik: Thank you for providing some research on the hormone picture and the long-term meds picture. I have the same diagnosis, basically, and I'm going to read up on it, then talk to my MO about it. I'll be on Herceptin until about October/November, so there's time to figure out whether to continue on w/the Tamoxifen past that point. I haven't actually started it yet...need to swing by the drugstore today and pick up the rx.

MaineRottweilers: Thanks for providing another important perspective to consider on AHT. I'm so sorry you had to go through this twice!

PatRN10: YAY for being on the cusp of ditching the wig!

Andra: Glad for you that what seems like real hair is starting to come in. On the brow front, I'm actually in a similar boat at this point, so I think there's some pattern there. My brows held on through chemo...they kept thinning, but I still had definite hairs along the whole eyebrow. After chemo finished, I noticed them getting steadily skimpier, and now I have total bald patches on parts of both. I'm clinging to what someone else advised about the brows coming back strong about 12 weeks pfc.

Your ugly prom dress snowboarding plans sound hilarious! Pictures? ;-) It must have felt so good to do that longer run, and at least some of it at a strong pace. I've been walking for 30 minutes to an hour each day and pushing myself to take a couple of hills each time. It's so good to be able to do that without feeling like I'm going to collapse! I feel impatient to try to run a little but am waiting until the infection completely clears. Luckily, the antibiotics have worked, and the infection is almost gone. I get my first (maybe only?) expander injection this week, though, so I might have to wait because of that, too.

As a rule, I'm feeling so much better. I've really been working on eating more healthfully lately, too. I'm eating vegetarian most of the time, with very little dairy (except for cheese...I can't face life without at least a little cheese!). I'm eating almost zero red meat and very little chicken, more fish. I'm trying to generally avoid sugar and alcohol, though I can't be absolutist. I had a glass of wine last night for the first time in a few weeks, and really savored it. With the increase in exercise, the cleaner diet, and the ebbing away of chemo edema, I've lost a few pounds.

Wishing everyone a great Sunday. We're being super lazy this morning so far. Yesterday was jam-packed, so I'm in no hurry to get out of my jammies....

xoxo

Kimner33, you look great!!!!

When was your last chemo treatment? I have my last Taxol tomorrow, and can't wait to stop wearing hats. Wondering how long your hair growth took!!!

Hi all -- It's been a while since I posted, but I have been reading your posts through my e-mail.

I've had a death in the family from pancreatic cancer so I've been in Charlotte helping my sister with my mom. My brother-in-law (sister's hubby) passed away last week after a 2-year battle with this nasty disease. He was my hero/inspiration and kept going until the very end. I thought if John could do it, so could I!

Met with my radiation oncologist, got marked up and will start my radiation next Monday. I was told I'll have to do anywhere from 3-6 weeks, with my rad onco checking me each week. Hopefully, I'll be on the short end of treatment!

Take care everyone......

I did it! Last Taxol today,yahoo! When the pump started beeping, telling us the chemo bag was empty, I felt so awesome! !!

I'm going to keep a chart of my side effects and when they started disappating. Looking forward to hair growth, rash clearing, and neuropathy easing up!!

Hope everyone has an easy and well feeling day!

Kim - you are indeed rocking that sweet short hairdo! So beautiful!!! Yay you!!

Meara - hooray for infection clearing, power walking, and feeling better overall! Glad you are eating healthier too. It really does make a big difference.

Congratulation Autumn for being done chemo - woohoo!!

Sorry for the loss of your brother-in-law igay1ord. With radiation starting, there are radiation boards on BCO - you've probably checked them out, but the one I am on (winter rads) moves way too fast to keep up. There are sooooo many people on it. I am just finishing up radiation (last full treatment is tomorrow, boosts end next Thursday) . If you have questions during your rads, I'm happy to answer them from my perspective/experience.

I'm still getting nausea every morning around 9am and lasts approx 2+ hours. Baffling. It doesn't matter what/if I eat or don't eat, exercise or don't exercise. Been like this 2 weeks. It is different than chemo nausea which I could keep at bay with food. Could be from the rads, or my hormones being out of whack.

My exercise is going better...yay! It is still hard, but my body is cooperating more. This is week 2 of relative muscle cooperation. I still fatigue much quicker than 7 months ago/before chemo, but that is obviously expected. Still have achilles problems but the acute flare is better, just my chronic achilles problem now. My right hip labral tear is also bothering me and has been in the background this entire time but now inching up as I increase exercise. Not sure when I will seek ortho for that. It, along with carpal tunnel surgery, was tabled by breast cancer. I must be getting much better from the cancer treatment if my orthopedic problems are moving back into the spotlight. That is both good and bad.

Happy Wednesday!

Andra xo

Down to the last 5 rad txs - all boosts. #1 was today, 4 more next week.

Buzzed my hair off again this morning. Lenny thought I was crazy to not let it keep growing, but that 1/4inch of patchy doesn't look as good nor feel as comfortable to me as having it buzzed all over with a millimeter of shadow. I've gotten so used to being bald-ish and being outside that way. Having dark shadow now is great!! Looks like an intentional buzz. Just dreading the years it will take to grow out. Having it a couple of inches long with be awful. I don't know anything about styling hair. When it was long it was so freakin easy...wash and go...no products, no hairdryer, no styling. Short and even medium hair is harder and much more work and maintenance. Ubershort is very easy. Guess I'm going to have to start budgeting some hair stylist costs on a regular basis when I grow it out. Just need to embrace that! I think in another couple of weeks the front and temples will catch up to the back. Now if only the eyebrows and lashes would catch up!

Also went to a therapy appt this morning. First visit it really just giving my back story and learning her background too so I don't know if I have any connection with this person, but I get 6 visits fully covered by work without going through any insurance, so I'm going to take advantage of that. She has a very sweet dog that was there for the appt which made me very happy! I'm feeling great so it is hard to know what to talk about. Sometimes I don't want to talk about things that I know will bring up an emotional response when I am feeling so great....but I know I need to go there eventually.

have a wonderful weekend everyone!

xoxoxox

Happy weekend, everyone! It's raining here in Northern California today--probably a last gasp of El Nino before things dry up for the season. Snuggling on the sofa with my kiddo while he watches a Harry Potter movie.

Autumn: congratulations on finishing chemo!!! That's such a huge hurdle to get over. I hope the side effects ebb away quickly, and that your hair growth comes equally quickly.

Andra: I hope the nausea you've been feeling in the morning goes away--maybe it will now that the rads are wrapping up. Congratulations on being on the cusp of finishing! It's funny, when I read you'd shaved down your regrowth, my reaction was like Lenny's: "Whaaaaaat?" But I get it. The hair growth is so crazy uneven at this stage. If my regrowth were dark, I'd probably consider doing the same. But it's silvery gray and doesn't show up against bare skull too well, so I'm just going to let it go until there's enough to cover, and then get things shaped. Happily, the crown, temples, and forehead are starting to fill in, finally. And I swear I see a few tiny hairs starting on my brows.

I hear you and Homeschool on the styling-short-hair quandary. Medium and short hair can be a lot more work. I'm considering keeping mine super short for awhile, though--think Ellen Degeneres. I'd wear it messy with a little product; hopefully there wouldn't be a lot of styling required.

Andra: I hope talking with a therapist proves to be helpful in some way. It's cool that she has a sweet dog hanging out in the session! I like my therapist so far. Last time we talked about the difficulty I'm having giving myself permission to do the things I want to do. Like I realized a few weeks back that I feel like going away solo for a few days--to regroup, spend some time hiking, work on some writing. And when I told my husband, he was very supportive. But ever since, I've been kind of walking it back, feeling guilty for wanting to go off on my own. Like, my son just got his almost-normal mom back again, finally, and then she wants to go away? The therapist is helping me get past all that. I even researched hotels yesterday.

Homeschool: I'm glad you're following up with your MO and NP on the results of the recent CT scan. Having questions like that hanging out in your brain is stressful. I have a CT scan in a couple of weeks, too. The scan before my chemo started showed a few spots on my lungs, though no one seemed overly concerned about them at the time. My MO wants to re-check now, though. I'll also be getting a colonoscopy at some point because there was something seen on my colon, but the radiologist felt it was likely nothing to worry about.

Hope everyone has a great weekend!

Hi everyone! Just jumping in for a quick "hey" before I head out the door to the infusion unit for Herceptin-only, Round 2. It's funny how much I still dread it, even though, intellectually, I know the side effects are incredibly tame by comparison to chemo.

We just got back from a little road trip over the past week, since my son has two weeks of Spring Break. Drove down to Southern California with a couple of fun stops along the way. We were in Morro Bay one day, and even though the wind kicked up and made canoeing/kayaking on the bay a bit more challenging than normal, we did go out. I was pretty proud of how well I was able to row, even with my left arm. And the best part: canoeing up close to a sea otter who was twirling in the water, grooming his fur, and then popped his head up to gaze at us curiously as we drifted by him. Getting up close to wild sea otters has been on my bucket list forever.

We also visited the new Wizarding World of Harry Potter at Universal Studios in LA, and that was a blast. My son enjoyed it, but I might have been more geeked out than even he was. ;-)

Feeling pretty good, in general. The hair fuzz is coming in thicker. I forget sometimes to put a hat on. Walked right into a coffee shop during our trip with nothing on my head--only realized it when I saw people staring a bit. Screw it. I'm getting so tired of hiding my head.

Off to infuse now. Hope you all had a great week last week! xoxo

Smurfette: I don't know how the weather is where you are, but it's heating up where I am--that's also contributing to my cap/beanie fatigue. ;-) It also occurs to me that a big part of what drives me to cover up before I go out in public is that people might stare at my bald head...but the reality is, they stare at my beanies and caps, too, because it's pretty obvious that I'm bald under there. So my whole rationale is fairly irrational.

Happily, the hair down to my front hairline and crown is coming in faster now, and I think I'll be mentally ready to ditch the cover-ups in another week. It'll look like I had my hair buzzed off, but I'm fine with that as long as it's not too patchy, with a lot of scalp showing through.

Now if my eyebrows and eyelashes--which abandoned ship quite late in the game--would just fill in again, I'd be ecstatic.

Oh yeah, my hair is coming in pure grey (well, grey/white, more accurately), too. It used to be dark blonde with some grey strands, but any sign of my old color is gone, gone, gone. As you said, though, I'm just glad something's growing, no matter what the color!