Starting Chemo March 2015

JackBirdie, I think the joint /muscle pain might be from the Herceptin or possibly the doxetaxel? I'm not sure but I am on Neulasta as well , but hadn't had this ache before the change in meds, not sure. It's funny you mention online shopping , I'm now waiting for a new pink top to be sent my way since I ordered it yesterday! lol. I highly recommend the skechers shoes I bought last week! Easy to walk in and anything that comforts me lately is a plus. I wish i could nap, I'm not a napper , never could , except when pregnant. I have laundry to do and don't have the energy but I'm not too worried about that. It'll be there tomorrow.

trvler- I'm rt here with ya. Looks like yesterday was my last day with out a hat or wig. I found it strangely fascinating to pull most of it out this morning. Still have a bit. But big bald patches. That is my only concern too.... The gym. That's the only place I can't wear a wig. Tomorrow is going to be rough but I think after the first day I will be ok with it. Once I get all the aww faces out of the way. Lol.

I had very long thick hair and cut it off to within an inch or so and it looked awful. My friend came over and shaved it right down to the wood and now I wear a tube scarf everyday. I bought a wig and it looked quite nice but I couldnt get used to it and ended up trying to put the 'hair' behind my ears and usually ended up pushing the bangs over too far and I looked stupid. I haven't lost my eyebrows so it's not so bad. I never thought too much about the hair loss at first , I figured it was a small price to pay to get better. Having said that, it's definitely tough because to me , it's like the billboard telling everyone what's wrong with me. Also the picc line in my arm which I try to hide. There is no shame in this situation though, we are all fighting a battle and the hair will grow back in a matter of months and we'll be better off for it. I try to focus on the positives and steer clear of feeling scared and the 'why me' stuff which I thought about too often. I felt like I was sitting in a deep dark hole in the ground alone but as I go along I feel more optimistic and hopeful, I want to focus on getting healthy , hopefully lose some weight, get more active and realize that I'm being given an opportunity here to have a good life.

You guys have no idea how much these posts are helping me. I am not really feeling why me. I know I had just as much a chance as anyone. But does anyone else feel like now it's everywhere you look, there's cancer? I am so sick of it. lol

Molly- so sorry about the missed vaca ... You're weekend getaway looks super though!

TerrieMarie- it's possible it's the Neulasta even though you didn't get the pain before. You could try 10 mg of Claritin. Not the Claritin D. It helps me a lot with the pain that you are describing. I don't know why an antihistamine works for that, but it seems to.

No, no. I don't feel you are nagging. I feel like the first time will be the hardest.

I also feel as though I see cancer stuff everywhere - annoying!

Sharon your grand kids are adorable!! And your place looks like a lotta fun, you have your own zoo😀

I'm getting an Alex and Ani bracelet for each treatment, two also as gifts. Tomorrow which I'm dreading not the actual infusion but knowing the days to follow will suck... I will see if they sell an F bracelet.

My head is so sensitive - does the coconut oil help that? Need to get over to health food store. I wor wig with a cap yesterday and this am to yoga - it's ok nobody knows it's not my hair till I tell them. Problem is it slips a little forward or backward,any advice?

Gorgeous day in PA, going to soccer in a bit. Katy where in Doylestown did you live? My husband lived in Doylestown years ago, we are 25 min from there, I also worked there last year for a vet office. Did you ever do the mercer museum?

Here's one of my love bugs - Southern is his name, he's 4 and his bark is worse than his bite

Hi all

Buzzed on friday and cdnt sleep friday nite because scalp felt so sensitive. Ended up wearing a soft hat. Got 2 satin pillow cases from BBB yesterday and sleptlike a baby last night. Oh yeah, took an ativan. Lol. But the satin cases did help a lot! I wear an Adidas baseball type hat for thegym, and there are 2 other women there with same do as us! Trying to get up the nerve to take it off if PS lets me go back to Spin.

I hope everyone is enjoying some nice weather. Its Finally spring in NY.

Hugs!

Arlene

Greenae: Do you know what kind of satin pillowcases you got? I looked there yesterday and the only ones they had were these 'silk' ones that cost $69 and they didn't even feel that good. I am trying not to take ativan to sleep. As it is, if I do, I wake up at 4 am and can't go back to sleep. 1/2 xanax works better. I am trying to only take anything when I have to. I am worried about addiction.

BB: You described my feelings exactly. I am mourning my normal life. I also feel isolated. I am one of only a few stay at home moms left on my street. Most of them went back to work. I have never really connected with most of them anyway.

I see everyone out enjoying the weather. I want to push my kids out to play but my older daughter has bad allergies and refuses to take anything for them so she hacks all night. Also allergic to dogs and cats.

I love all the great pictures. The nature ones are so soothing.

Sue: I agree that cancer is everywhere and we are just noticing it now because it's us. It gets me when even my favorite nighttime soap (Nashville) has to have a story line about it. I know the guy will get a miracle cure. I just don't f-ing want to think about it.

Hi -Sue-

I remember well the long days and nights between dx and test results and treatment decisions. It's an awkward, painful, scary time. No doubt about it.

I understand why you are asking the question about SEs relative to expectations. I don't think there is any answer except.....it depends. I suppose most of us fear the worst and hope for the best. The medical teams do a much better job of managing SEs than ever before. But that means taking even more meds, and some people are unaccustomed to, and even against, taking so much as an Advil for a headache.

There are wonderful ladies here that are suffering MUCH more than I am. It is completely disrupting their life. And there are others that are able to make some adjustments and get on with it. Nobody is unscathed. It is something only you can decide. And you have to fly blind, since there is no way to know in advance.

I would say, if you haven't already, is to read the thread through from the beginning. The stories are there. The unexpectedly better than imagined, and the horror of never having imagined it could be this bad.

You can ask your MO after you get your mammaprint what he or she would say if you started....and felt you couldn't handle it. Could you stop? What are the risks if you start and stop?

Since you haven't filled out your profile, or you have but haven't made it visible for us to see, I can't tell if you are hormone receptor positive. Maybe you mentioned it previously and I don't remember. Anyway, if it's available to you as a treatment, in most cases with an intermediate Oncotype score, you will get more benefit from the hormone treatment. The chemo gives you a few extra % points usually, on top of the HT. I am not a dr., or a nurse, so please ask your onc these questions to confirm.

So, bottom line.....nobody knows. Nobody can tell you. All you can do is ask yourself if you can handle what Bekah or Shaz are going through. And others. And then hope you are luckier than them.

And understand that there is no safety in the numbers, no guarantees, chemo, even if horribly debilitating, will prevent recurrence. Will you think chemo had been a waste if that happens? Perhaps not, if it allows you to say to yourself you've done everything possible.....then enjoy your life without worrying every day if this is the day you find out it's back.

If I didn't know exactly where you are right now, I maybe wouldn't say so much. Keep in mind that by definition, everyone in this group chose chemo. You could probably get some very different answers if you start a thread and ask "tell me the reasons you opted for no chemo?"

Best of luck once again and I'm so very sorry you're in the place you are in right now. A warm hug and fingers crossed for you

Katy

Carol: I am happy you are having minimal SEs!

Sue, you have to go into the profile and to the right and select make it public.

Yes, Tryler, my oncotype score is 20. I guess they recommend it if it's over 19. Also, my tumor size is 1.5, not 1. I'll have to see if I can correct that.

Awaiting results of the Mammoprint.

Thank you!!!

I'm still trying to figure out what an Oncotype and Mammoprint is and why I don't know mine. Is it because I haven't had surgery yet? Or my doctors stink at communicating?

Greenae push your surgeon. You should be able to spin. They go overly cautious on waiting to return to exercise. I have found it is helping my lymphatic system after the sentinel node biopsy. If I miss a day of exercise I get a tight feeling where my sentinel nodes were removed, but after a rde, hike or walk any tightness goes away. I think it also helps me clear out and have little side effects, other than nasty mouth for about four days after an infusion. Plus on a spin bike you don't really use your arms that much unless you stand, and you can set the tension wherever you want to.

Just got back from a 34 mile bike ride and feeling great. Burned 1209 calories too! I know I sound like a broken record, but I really believe the exercise is helping me keep side effects to a minimum. Am I as fast? No, but I am still doing, which is important to me. With round 3 on Wednesday, feeling nervous. But I don't care if I have to go out there and ride at 10 mph, I am still going to ride. It is my way of feeling normal. Still no drugs but Claritin and Steroids.

Other than work, I just wear a do rag everywhere. I'm over it. I found some soft cotton ones that are just bandana material, love them! Feels like I'm not wearing anything. I do get some second looks, but more like people are puzzled, like I couldn't possibly be out there riding my bike with chemo. But I am! Still riding about 100 miles per week and walking or hiking another 15-20 miles. Hope round 3 doesn't take me down which I know is possible.