Starting Chemo March 2015

Italychick

Eileen, awesome for you! Just enjoy being out in nature and smell everything and look at all the pretty scenery. My daughter's neighbors ride big cruisers and do the same 2-3 blocks however many times they want in early evening. But they do it all the time and enjoy it. It's a great way to get some exercise and an improved mental outlook. I have been over there when they are riding and they chat the entire ride and have a great time doing it. That is essentially what Cheryl and I are going to do next ride - she found a flat area by work and we are just going to do it several times over. In San Diego, it is very hard to find flat areas - everything is a 6% or more grade hill. Which is what killed me yesterday. The legs felt like I was carrying concrete blocks.

I am a Stage 1 and doing chemo, but I was completely shocked by it. My problem is negative receptors, which I guess means more aggressive or scary or something. I'm not sure if that is true, or they treat it more seriously because there is no Tamoxifen or other anti-hormonal drugs available to negative receptors. My breast surgeon said I am so sorry, your lump was tiny and you have great scans, but you definitely have to do chemo. My PCP said the same thing. Knocked me back on my ass I can tell you because I had never contemplated having to do chemo. So stage doesn't really mean anything I guess. I am still confused by the whole decision process.

I've never put much stock in anything Hollywood type people say. They are all just people, same as we are. But I wonder how much pressure they get to say the correct things in the media so as to not panic or influence other people. I can say one thing, I don't like most of Hollywood, but I feel bad for any woman going through the breast cancer process, whether a lumpectomy or double mastectomy, because no matter how much money or help you have, the specter of death hangs over your shoulder and none of that money helps one bit.

And I gotta say, if I poop one more time today, I'm gonna have to walk around with a wet wash cloth stuck in my ass crack.

so-she-did

I meant to say that the media makes it seem like a BMX takes away all concerns about getting breast cancer again. Like it is the option where you no longer have to worry - Ha!

Jackbirdie

regarding why bmx- I chose this route knowing it would not increase my survival rate. But I didn't want to have a mammogram or MRI followed by a biopsy every time they thought they saw something, I thought living like that would crush me.

I didn't want a uni mx because my breasts were very large and I have back and neck problems. Having the uneven weight could very well have made that problem much worse.

I didn't want an lx because I've had a lot of lung problems with a lot of radiation of different types aimed at my lungs, and therefore didn't feel likehaving the follow up radiation I was told I would need have to have with lx.....

There are really never any really good options, my Oncotype was 30. Even with this chemo and 10 yrs of HT they are telling me my recurrence rate is 15-16%. Seems a pretty high price to pay for a still relatively high recurrence number.

Like I said. It sucks.

ninjamary

I know you ladies talk about your oncotype score. I'll be honest...I have no idea what you are talking about. I should probably learn more and not be so ignorant before I mouth off to why don't some don't need chemo. Like Amy said above I knew nothing about ER/PR and HER2 before all this. Heck when they told me I was triple negative I thought that was a good thing. Negative good. Positive bad. Uh, yeah, no. Not in this case.

Joan Lunden made this statement:

"I had my lumpectomy and that went well. We found we had shrunk the tumor about 60 percent. There was a larger one and the smaller one we had shrunk completely," Lunden, special correspondent for National Breast Cancer Awareness, told Matt Lauer Friday. "As I learned there was no other decision to be made — there are no shortcuts in treating cancer."

so-she-did

You are right Katy, there are never any good options. It all sucks. We all, celebrities included, do the best we can with the knowledge we have. We make the decisions that are right for us.

I didn't mean to say in any way that Sandra should not be getting a BMX and I certainly did not mean to make anyone feel like they had to defend their treatment decisions. There are excellent reasons out there for having a BMX or any other treatment option and it is a very personal decision based on a lot of factors. My only beef was with the media's portrayal.

Theresa - You made me laugh! Try putting a little Maalox on that washcloth before inserting it between your cheeks. I hope the pooping stops soon and that it is just a tummy bug.

Eileen - awesome for getting out there!

so-she-did

Ninjamary - thanks for sharing that quote from Joan Lunden. Her last statement is spot on!

Jackbirdie

I do think it is the media mostly....but I don't get what their vested interest is in "the positivity movement". Maybe they sell more commercial spots that way.

But the media is just a representation of our society.... Our friends and family (and strangers) think that being positive actually cures cancer. That never want to hear the nitty gritty of what a test result really means, or what your prognosis really is- they just want to put RESPONSIBILTY ON THE PATIENT (their friend, loved one, whatever), to cure themselves by being positive. After all, we must have done something to bring this cancer on ourselves in the first place, right?

I did not feel I needed to or was defending my decision. I was just pointing out that there are always facts that don't at first meet the eye. I'm with all of you, helplessly uninformed before dx, obnoxiously vocal after. Hah! Had no idea what ER or HER ortriple negative meant.

I thought what these a- holes are still telling people, that bc has evolved to something akin to the flu. And with a 99% cure rate! And if you wear a pink tutu you should win the Nobel Fucking Prize!

I was completely unprepared for this. And what it meant. This is how far we've come with awareness.

eheinrich

Ninja: oncotyping is only relevant for stage 2 hormone receptor positive breast cancer. They take a slice of your tumor and look for the presence of activity in certain cancer promoting genes. Depending on your combo of these they can pretty well predict if chemo will help you (high score) or make no difference to your chance of recurrance/etc (low score). Some of us lucky ones have intermediate scores. There is no predictive value to these scores. Might help, might be unnecessary - who knows.

Since you are receptor negative they wouldn't have done it on your tumor. It also isn't done for HER2+ cancers.

Italychick

Amy rofl! Ok, seriously, in a moment of desperation, the Maalox will get tried.

TerryMarie

Sue ... right now its taxotere and herceptin , pretty sure the taxotere is causing all this horrible stuff. I went out today for the first time in 2 wks and felt weak, unsteady and unsure of myself .. I think its lack of sleep, extreme fatigue, sore mouth, tingling fingers, my face is mottled looking and my eyes are red rimmed. Im just wearing a scarf over my head so I look awful. I don't care one bit One more left for me and then radiation starts in July. I'm so happy that I'm retired thru this, I don't know how I'd get through it. Latest thing for me is restless leg syndrome when I go to bed at night, I can't sleep because of it despite taking gravol before bed.

eheinrich

In my former life I was a cancer researcher. My PhD work was in lung, my first job out of school I worked on pancreatic cancer. These are the 2 with the lowest 5 year survival rates. Lung cancer doesn't raise a lot of money because of the thought that people bring it on themselves by smoking. Both cancers have no means of early detection screening. I used to get so annoyed at the disparity in research grants/funding between most cancers and breast cancer.

My lab at UCLA participated in a lung cancer walk (no ribbons, low turnout, no media attention). The woman who played Mrs McClusky on Desperate Housewives was there. She had lung cancer dx twice (idk if she smoked) - so did her character btw - when she found out that she was dying she wanted her character's arc to follow that and the character died on the show. She said it was cathartic, sort of like practice for death. Anyway a few of us were talking to her & she brought up the funding disparity. This was around when Christina Applegate had her double mastectomy. Mrs Mc said that bc got a lot of attention because "tits are sexy" (paraphrasing) and Christina can get up on stage and talk about her cute boobs. Lung cancer - not sexy. I guess my rambling point is that even though the pink tutus piss a lot of us off, the whole pink ribbon campaign has done wonders for exposure and fundraising. I'm not sure brown ribbons and tutus for colon cancer would get as much excitement - which ultimately is what the actress was saying.

Anyway, Christina's (we are totally on a first name basis ) mom had bc and she was diagnosed at 36 and was + for the BRACA gene. This article http://www.cnn.com/2008/LIVING/10/14/o.christina.applegate.double.mastectomy/ was pretty good - towards the end there's a bit of happy crappy blessing bs, but the beginning is a good description of the impact of loss of your breasts. (it bugs me how it's a thing people pooh pooh)

I'm trying to finish our taxes (got an extension - they are very involved) which is why the post-splosion. I'm restless.

so-she-did

TerryMarie - I get restless leg syndrome (and completely wound up!) any time I take OTCs that are supposed to make you drowsy - like Nyquill and Tylenol PM. In fact, I asked them not to give me any Benedryl unless they absolutely had to since I would most likely running around the infusion center like a kook unable to calm down and sit still. Maybe there is a similar ingredient in something you are taking?

wpmoon

Theresa you made me laugh too. Use baby wipes for tp burn. It helps!

I'm in the chair getting a liter of fluids. Not how I envisioned spending my day off but I haven't been able to drink enough water the past few days.

TerryMarie

I checked the gravol and that shouldnt cause RLS , other than that I'm just taking Extra Strength Tylenol, nothing stronger for me because the constipation side effects were freaking awful.

Carrie37

I hate the media for so many reasons!! I did go to the support group and it was great. I wish is was more than once a month because it seems helpful. It helped to get out of the house.

Jackbirdie

Eileen- very good points. Awareness did have to come first and pink is better than brown. Komen in specific may take more than their share of blame for being nothing more than a publicity organization. But that's what their mission was at first. Later, they missed the signs, and failed to evolve into the sort of organization needed today,

And as much as the truth hurts, I'm guilty of not being as sympathetic to lung cancer. I feel somewhat differently about colon cancer. They are both "uglier" cancers I guess. And I never recognized that fact. And the fact that made it so march harder to raise money for, or to develop an early-detection system. Makes me feel very narrow-minded.

so-she-did

I use a little topical magnesium oil for helping with restless leg syndrome. I'm afraid to use it right now, though, since my skin is so sensitive from chemo and it does cause a tingling, burning sensation when first put on. I would image an epsom salt bath or oral magnesium would also help in the same way. Just be careful - too much magnesium can give you diarrhea.

Eileen - no, I'd imagine brown ribbons and tutus could be a little off-putting. Although, I think this is one kind of cancer that will, for want of better words, "gain popularity" like breast cancer did. More people are talking openly about getting a colonoscopy and I could see people getting behind this one (no pun intended) because of the "fun" of it - just like breast cancer. Boobs and butts.

ksusan

Jumping in to say that when I asked for my oncotype, my surgeon and MO both said that it didn't matter because with a positive node, I'd be recommended to have chemo no matter what the score was.

eheinrich

Oncotyping is also not done for positive nodes. Just stage 2, node neg, Her2 neg, ER positive bc and the scores are dependent on the patient doing 5 yrs of tamoxifen. So if you have a low score but don't do tamox then your score doesn't mean what you think it does. Very specific, no? This is why cancer research is so hard and why there will be no "cure for cancer". There are so many variables for each tissue/organ type, kind of cancer, each subtype and the mutations relevant to your specific tumor. Blech

IndyGal35

Yep, I was in the chair today for chemo #4 of 6 rounds. Man, I was kicking and screaming the whole way. I can't believe how fatigued and not hungry I already feel! Wow. The side effects sure do come on quicker, but I feel like we finally have a treatment plan in place that helps me to bounce back faster.

The good news is that my nursing team was able to get a co-pay card for me from the manufacturer of that $225+ anti-nausea pill. So, after insurance covered their portion, the manufacturer wrote off my remaining co-pay! I got the oral pill today for $0! My nausea is usually delayed, so I'll let you know how it goes if I need it.

Also, my MO really bucked heads with me about getting a preemptive steroid again for my rash, nausea, and appetite, which all start to torture my about 6 days post-chemo. He says he really doesn't want me to take the steroid unless I really need it. (Uh, hello? Don't you think that proven side effects after every chemo so far on day 6 qualify as a medical need?) Well, before I met with him, the NP had already heard me grovel about how much the steroid helps me. CVS called, and I found out that she had already written me enough scripts to last through the rest of my chemo infusions. Screw you, MO. At least your NP doesn't want me to suffer anymore than I must!!!

The bottom line is that YOU know your body better than any provider ever will. The squeaky wheel gets the steroids. If one provider says NO for what feels like an asinine reason, don't be afraid to get a second opinion.

ninjamary

Question - Anybody get head sweats or is it just me? My scarves (if I fall asleep in one) or pillow will be damp/wet after sleeping. Before BC i had a head of thick curly hair and I don't remember having head sweats.

molly1976

Oh yeah. All about the head sweats over here.

Meme117

My head gets very hot, I'm on fire. Anyone with blurry vision? Wondering if an eye appt is necessary or wait it out?

Instead of all the pink tutu walk publicity I'd like to see real stories of where the $$ goes. Here is the list of top breast cancer charities http://www.charitynavigator.org/index.cfm?bay=cont... , Susan Komen raises over $200 million a year and their rating is 2 out of 4 stars.

E thanks for the story, I used to watch desperate housewives and remember that woman. How was the bike ride? My bike is also ready to go get air, I need flat terrain, maybe later in the week.

eheinrich

My bike ride was short. I filled my tires before I left. Within 4 blocks the front was slowly deflating. Tomorrow I need to find a bike guy. I also need a water holder & fanny pack of some sort.

Italychick

Yes, blurry eyes, random sweating, same thing. I have a Mr. Magoo pair of glasses for when my eyes are off. But they go back to my normal vision. Guts seem better, but my legs are like tree trunks. Spin class for me tomorrow, in the back, wearing a freaking stupid wig, on a light level.

The lung cancer thing - so sad. I grew up in the Midwest, and a lot of coal miners ended up with lung cancer.

I'm not into the pink thing, but a lot of people are, and I admire them for it. At least they are trying to do something. The charity I have been behind at past points in my life was juvenile diabetes. Nothing worse than a suffering kid.

I bet at least it felt good to get out on the bike in nature. Four blocks is four blocks I say! I need Lake Michigan. I rode there with my brother, and man it was flat and beautiful. Of course, he is a typical Chicago boy, stopped and drank a beer during our ride lol.

SueH58

OK, I have to disagree a bit here about celebrity cancer.

1) Many celebrities do talk openly about their BC, i.e. Robin Robbins, Amy McBride Mickelson, Sheryl Crow to name a few.

2) I also feel that celebrities have so much attention on them that sometimes they just plain don't want to share aevery single detail. It's unfortunate if that leads to media that seems to sensationalize BC.

3) I think this portion of the population has better health care than other populations, i.e. minority women; thus, an early detection.

4) Statistics show that about 50% of early stage (I & II) cancer patients receive chemotherapy. So there are a lot of people who do not need chemo.

Anyway, that's my humble opinion.

so-she-did

Finally got the hummingbird feeder up!

slothabouttown

Amy your chicken coop is beautiful!

eheinrich

I want to start a thread within our thread. I feel like I know you ladies so well, but I also feel like there's life stuff outside of our bc that I don't know, but want to. So here is my thought: how about we each post a note about us. What do you do for work and/or fun? Hobbies? Family things? Favorite xyz? Future plans?

I did a starter earlier writing about my science gig. But prior to that I was an elementary school teacher (after being a stay at home mom for ~4 years). I've been unemployed for 2 yrs. Quit a good job with a horrible boss because I couldn't stand him anymore. Mental health was shaky, took some time before looking for a job - market is so tight that being unemployed made it seem like I had been fired. No bites. Blech. Trying to figure out what comes next.

For fun I sew some, I like to cook, love to garden, reallllly like thrift storing/vintage marketing. Last fall I had an etsy store & an upcycling blog. Will get both updated again soon, I think. I would like to get the skills to make/remake items for sale & get a booth at some of the mkts in LA as my next incarnation. I'm slowly working on furniture refinishing - my dining room set is first on the list - got it at a thrift store for not much money. It's got gorgeous features but it scratched up a whole lot. Reupholstered the chairs. Table is waiting.

Tag, you're it!

eheinrich

OK - Amy has chickens! Tell us more!