Starting Chemo March 2015

PrincessOfMeh

Quickly hopping in to say I'm okay. My MO is on vacation this week and rather than passing me to a sub, she scheduled my 3rd round AC for when she gets back (next week). So I thought I'd take advantage of my extra week of feeling as close as I'm likely to get to normal to focus on writing. I have about 2 months before the next project is due, which is loads of time really, but...Just caught up in work.

Jackbirdie

Trvler- I hear you about sleeping conditions needing to be just so. I used to sleep with a fan always, but last year bought an air filter thingy for a lung condition (2014 was a very bad health year with bc being the virtual cherry on the shit sundae) and now it works perfectly as white noise as well as allergan and toxin reducers. I take the lysine too and religiously swish with baking soda every time I go into the bathroom.

And Slothabout, despite being a little weirded out about putting oil on my head, the lavender scented coconut oil (really a bit of a misnomer, as you pointed out you need to scoop it out with a spoon as it is solid) was wonderful! Not at all overpowering, but I sure did sleep well last night. I put it on my face too, which often reacts to face creams of all types, and.....no reaction other than a non greasy moisturizing experience. I think this will become a long term staple in my medicine cabinet. Thank you for the great suggestion

Trvler

Katy, have you had mouth sores?

Which is better? To cut short or to shave?

Jackbirdie

Molly- thinking of you in the chair today. Hope all is uneventful.

Joanna- so nice to "see" you- beautiful pic. Nice dress and I can see why you want to hang on to your gorgeous eyebrows. I'm glad you're feeling back to almost normal and going to work. Hope it provides a nice distraction.

BB- I wish I had anything to offer in terms of help with the pain. Glad it is a bit better today. Since I'm empty handed, info-wise, I send you a big but gentle hug

Italychick

Trvler, my onc said cut short, don't shave because of infected/ingrown hair follicles. But everybody gets a different story.

Katy, my experience with coconut oil has been that it washes out of everything pretty well. I haven't noticed any permanent grease stains on any of my bedding or clothes.

Jackbirdie

Trvler-after my first chemo, I felt as if all around my tongue were little blistery like sores. It never developed into full on thrush, but it bothered me. I started the lysine and baking soda (oops I was using a tbsp too) and one or both in combination helped. I still have kind of a burned out taste in my mouth which makes foods taste funny, and almost totally ruins my coffee experience, which has always been one of the highlights of my day. I drink it anyway, because stopping would 100% cause a caffeine withdrawal headache

ninjamary

Coconut oil is the bomb. I've used it as a hair conditioner (coarse, curly girl here), eye make-up remover and moisturizer in the past. I'm not a fan of the smell. I do have some essential lavender oil, maybe that would help.

Theresa - my stylist gave me a pixie cut for all of 10 minutes. It looked cute, but my head really hurt from the hair loss and I just wanted it all gone. It was one SE that I could control. She also told me that it was a good thing I was shaving, because it was falling out just while she was cutting it. It seems I had a bald spot in the back too. Sometimes I wish I kept the pixie, but now I can play wig girl. I have Shauna (blond chick), Moesha, (crazy ethnic girl hair) and Mary (short and sassy dark brown..more me). Everyone likes the Mary wig. I brought Shauna out today because I was bored.

Mary

Trvler

You can get off that caffeine headache. I did. Eliminate all other caffeine during the day….then after you do that, take tylenol about 3 hours before your regular coffee and 6 hours later. It will only take a couple of days. There have been many times I have had to do this for surgery or what not.

Jackbirdie

Trvler- thanks. The only caffeine I take is 1, sometimes 2 cups of coffee.

I am not allowed tylenol. It is horrible on the liver and I struggle with elevated liver enzymes.

I think I'll just struggle along until I can enjoy it again. It's one of only a few remaining vices.

On the magnesium front, I use a spray. If you like the effects of magnesium you might try it. I get so sick if taking pills, and I have read that the body can absorb magnesium more easily through the skin. I'm not sure if that is true, but it is a more pleasant way for me to take it with all the other stuff going down the conveyer belt.

Jackbirdie

Mary- I love that you're having fun with your wigs. I think I wanna hit the bars with Shauna and/or Moesha! Hah! I've been getting a bit bored with myself lately. Not a good thing.

Believe it or not, now well 90 days post bmx, the surgery pain trumps the chemo. I cannot believe it. I am not suffering anywhere near what others here in this group are, but chemo certainly hasn't been nothing. I finally broke down and called my dismissive surgeon today to see if he has any ideas (possibly referring me to his new partner who is a plastic surgeon) about a scar revision surgery. I have read on other threads within this site that scar revision can reduce post-mastectomy pain. After all I've been through since 12/18/14 I can hardly believe I'm even contemplating this. And I know I am not a candidate for any kind of surgery until well after chemo. I'm waiting for a call back. My insurance company will gladly pay for reconstruction (because it's the law), but scar revision must be "pre-authorized" and "medically necessary". What horseshit. Will I have to get an unwanted recontruction to get rid of the pain? Sorry. End rant

Leighrh

Hi Ladies,

Just checking in!  I'm luckily having zero problems here lately.  I think because I am on the 3 week schedule, this week has been great.  I feel like my normal self, making it to the gym and work everyday!  Ive only had one round so I am hoping they all go this way but also keeping in the back of mind that this will be cumulative so prepping for that! 

Trvler- I am hair stalking you... LOL  you are 3 days ahead of me.  So far I am shedding a lot after the shower and when I blow dry but its still hanging in there.  I can still pile it on top of my head in a bun.  I am really hoping to get away with my little bun for a little while longer. At least until my next go round which will be next Thurs. 

Hugs to all of you still struggling.  Katy, I am so sorry that you are still having pain from your MX hopefully your surgeon can get you referred so you can get some relief!

Trvler

Rant away, Katy. I hate that shi$.

Leighrh: It won't be long now. I have an appointment to get shaved, although I think I am NOT going to shave, but go short, Sat. I am trying not to comb my hair a lot. I think if I even attempted to blow dry, I would lose 1/2 of it. But you are only 2 days behind me in start.

I am kind of mad. I ordered a bunch of clothes from my favorite website. They emailed me a 25% f&f discount so I called to see if they would just adjust. They said the one order they would and other they wouldn't because it was outside of the 7 day limit. (by 2 days) So that means pack it all up and send it back and reorder. I said would it make any different if I had cancer. She was really nice and put me through to her a$hole supervisor who told me because he had a family member die of cancer, it was inappropriate for me to even ask. I was like, WTF? I told him I was incredibly offended by his attitude as I not only a VERY loyal customer but how dare HE judge me. I am sorry he had a family member die but what does that have to do with it? I wasnt saying they owed me an exception because I had cancer. I just thought they might be compassionate. I also mentioned that they have to pay someone to receive the return and restock and resend the new order. How stupid is that? Sorry. Just made me mad. He did it in the end.

IndyGal35

Have any of you had luck with Zyprexa for nausea? My MO wants to put me on that through the rest of chemo, but the side effects sound awful. I'm trying to decide if the cure is worse than the ail

Leighrh

I am NOT shaving and you cannot make me    I am hanging on to every last hair until it's gone...... LOL  I'm just going to make do with what I have as long as I can.  I have a great wig and its a long one but I just want to see how long I can last!  It really pisses me off that I have to deal with this side effect..... I feel good..... I wanna look good!  I know everyone feels this way.... It's just in my craw today! 

Trvler

Leigh; I guess I am just so happy to not behaving terrible SE's, I am trying not to get upset about my hair. Honestly, I am more upset that I haven't been able to...you know...in the bedroom lately. Hoping THAT comes back, too.

Leighrh

Trvler---- I KNOW!!!!  I thought that business would hold out for a while.... I didn't really expect that to be a side effect ... I figured it would happen on tamoxifin.  I even started my period the day of my first Chemo!  Didn't last very long of course.  But I am determined to push through in the bedroom too! 

I am very lucky with SE's... I should quit my whining about the hair!

molly1976

I started my period the first day of chemo, too! Talk about adding insult to injury.

Trvler

I had a completely normal period but I usually have signs of fertility (egg white cervical mucous) sorry, it TMI, right after my period and I had none of that this time.

Trvler

Here is a thread that might be of interest to you, Leighrh:

https://community.breastcancer.org/forum/150/topic/828217?page=1#idx_14

neverthought

Hi Brave Ladies!

I am a week post 2nd TC and doing OK except for about 10 bm a day.  Finally gave in and started the loperamide, and that works so far as long as I keep taking it.  Don't have the stamina to walk far or work more than a six hour day, but am counting my blessings.  And praying that root canal part 3 goes smoothly.  Feeling lucky to have nice people around me. Just have one really nice friend who keeps telling me about the surgeon she knows who went back to work 2 weeks after a bilateral mastectomy and reconstruction and other similar stories - I think she is trying to encourage me but instead makes me feel like a loser.  But can't get mad as she also sends me flowers and food!  I still have pain where my boob used to be and muscle pain/tightness especially in the morning.  Not sure when I can start doing some real exercise and not just stretching.

Has anyone thought about knitting a foob?  I found directions on a web site: http://www.knittedknockers.org/download/patterns/kk-pattern-knit-with-instructions-knit2.pdf but haven't been to the yarn store yet.  My remaining boob is so small I can get away without a fake one at least until the warm weather comes.

I got a short hair cut before I started chemo and never got a shave.  I still have some chin length hair that shows up when I have a cap on so people don't know I am mostly bald.  Otherwise wispy with bald spots, kind of like I remember my grandma when she was 90 or so.  Did bother me when it was falling out in bunches, especially in the shower, but it didn't hurt.  Does still having hair mean chemo is not working???

Realize the chemo I am having, just 4 rounds of TC, is not much compared to most and admire you all for doing what you have to do.   Hope what I am doing is enough.

If you like to buy American, I did buy some caps from www.headcovers.com.

Love everyone's photos and sharing.  It is getting me through.  Thank you!

avmom

Hey, Neverthought, someone knitted me a foob using the knitted knockers pattern, and it is great! My remaining (for now) boob is a B cup, and the knitted foob is perfect. I got the knocker unstuffed, so I cannibalized an old pillow for some fill, and voila, a comfortable foob. I wear it in a stretchy bra that has a pocket (like a genie bra), and it is a really good match, without being heavy. It even has a knitted nipple! If you can knit, go for it. I can't knit at all, but I think it only took about an hour to knit

Jackbirdie

Yay Leigh! We are a bit short of poster girls right now. Go on a take a seat next to the stupendously MAHVELOUS (and nice, informative and sensitive) Italychick, aka Theresa.

And Trvler, you are owed some consideration. It's hard to get things done within other people's ridiculous marketing-influenced time schedules when you are dealing with the shit sandwich. Good for you for standing up to the fuc$tard who judged you, verbally abused you and in general was an a-hole. Whoever his poor relative was who died of cancer was probably on this site complaining about what total losers her relative were. They were lucky to keep you as a customer. Glad you got your discounts in the end and I hope when all the stuff arrives it's like Christmas in April!

Jackbirdie

all such great foob ideas! I cut a nerf ball in half on the diameter. Perfect B cup. I have the pocket bra and it's onlyfor whenever in the future there is something I really want to wear, but it won't hang right without boobage.

Jackbirdie

Neverththought- I am on same regimen as you, only 6 rounds. I have gotten off by comparison pretty lucky SE-wise and it's been hard to push that same thought of "maybe it's not working because I'm not sick enough" thought out of my head. I'm sure it's just irrational thinking. But as they say....welcome to my world.

I continue to question myself that I forwent the Adriamycin (red devil). My onc was against it, but left it to me. I trust this guy pretty seriously, so I went with his gut, not mine

Trvler

Katy: Because of existing or potential heart problems?

Italychick

Katy, for what it's worth, I agonized about Adriamycin vs. Taxotere too. I had a chemo sensitivity test done (thousands of dollars out of pocket) that told me Adriamycin and Taxotere were both 82% effective on my cancer cells, so the same. I'm not sure if that is the same with all people. I plan to ask my oncologist about effectiveness after the next chemo. What I don't know is if 82% effectiveness is a great number, or not so great. That part I haven't discussed with the oncologist yet. I did the testing on my own, not through my doctor, because it isn't an approved health insurance testing procedure.

Katy, I also asked my oncologist if they were giving me enough chemo because I don't seem to be having the side effects everybody else is, except hair loss and nasty mouth. She said it is done on body weight and surface area, to trust that I am getting enough. I guess I feel like if I'm not suffering it isn't working, but she said there is no reason to suffer with chemo, not with all the drugs, etc. they have now to help. Except I haven't taken any except the steroids and Claritin and whatever is in the IV infusion. So I hope all is working for me. I guess only time will tell.

Leigh, I never cut my hair until the last second. I had my hair for 21 days post round 1 chemo. Then I took a shower, combed my hair afterwards, and half of it came out in one comb and the part on my head was about 2" wide. So then I had my husband buzz me to about 2 and 1/2 inches. As much as I thought I might care, I don't care at all, except for wearing my wig to work. Keeping it quiet there.

Trvler, my oncologist said do not shave my head but buzz it, and don't buzz it too short or else it will be like little wires poking me in the head. So my husband buzzed me on I think the no. 3 or no. 4 guard on the clippers, whichever is the biggest guard. She said if I shaved I would have more issues with folliculitis and infected pores. I do not have any head pain or poking or anything. I did get some folliculitis, but I get that if I get anything done "downstairs" too.

Ninjamary, other than wearing the frickin' wig to work, I am all about the do rag everywhere else. I keep waiting to look in the mirror and see Yul Brynner looking back at me, but so far, all I see is a scraggly head that kind of looks like that Gollum from the Lord of the Rings. Good thing I can laugh at myself.

Jackbirdie

Trvler- the conversation was,

MO: well, there was a little something in your echo, it may not be anything

Me: so that is giving you pause in ordering the A?

MO: no, that's not really giving me pause. You're young and have a lot of life ahead of you (wanted to kiss him- I was 57 at the time) and A can cause irreversible heart damage. If you were triple negative, or not PR positive, and there were limitations to the overall treatment plan, I would vote yes. But you can take advantage of HT, and even though Opncotype score was relatively high (30) you were node negative and your tumorwas relatively small (1.6). So I'd like to try to cure the cancer, and not leave you in worse shape than I found you.

Me: What would you do if it was you or your wife making this decision? (the decision being doing or not doing chemo, and which regimen to choose)

MO: if it was me, I would do chemo. Even though your Onccotype score is technically intermediate, that is a man made line drawn in the sand. You only get one chance to "cure" cancer at this point in time. After that, you "treat" cancer. Improvements are being made all the time, but now is the time to kick its ass. (Yes he really said that). So I would do it, but I don't think I would feel the added risk of the A wouldbe worth it. I'll leave it up to you.

So, for the first and only time since dx I didn't take the most aggressive possible way. And I wonder every day if I did the right thing

Trvler

But he was saying if it were him, he wouldn't do the A?

Italy: Do you exercise a lot? I continue to read people saying that people who exercise regularly do better on chemo. I think you do. That hair falling out is the telltale sign. I was wondering if maybe I got the placebo, too, since I had such minor SE's so far.

Jackbirdie

Trvler, sorry Iwasn't clear. He was saying that if he was stage one with Oncotype 30 he would definitely do chemo. He preferred for me not to do the A, but left it up to me. There was a bit of a grey area as to whether he would do the A. I got the distinct imoression that he would not, given these specific circumstances.

But if he were triple negative, or even ER -, his answer might be very different

Italychick

Trvler, I exercise almost every day except Sunday, depending on what you consider exercise. And sometimes even on Sunday, but that is usually a 4 mile walk on the beach. I ride my bike, hike, walk, or do spin class at the gym. I lost 50 pounds 4 years ago, and have been psychotic about trying to keep it gone since then. I'm still overweight, but not fat now. I also enjoy the endorphin rush I get from exercising. So an average week for me is riding my bike about 110 miles, walking/hiking between 15-20 miles, and anything else is a bonus I throw in. I don't really do gym work unless I can't do anything else and then I do a spin class. I hate going to the gym and will do about anything else if I can. So far, I have maintained that schedule through chemo, with the exception of the week of chemo because I lose the Wednesday I do chemo and can't do a bike ride that day. I absolutely feel that exercising has kept me strong and able to rebound so quickly. Although with round three next week, feeling a lot more nervous about that because I keep hearing chemo effects are cumulative.

My oncologist was more in favor of Taxotere than Adriamycin. She said Adriamycin is an East Coast chemo, and Taxotere is a West Coast chemo (treatment protocol developed by UCLA, which is also where Herceptin came from). She did say if my lab work warranted it, she would have put me on Adriamycin if she thought it gave me my best chance. I think with Adriamycin there is a lifetime limit you can get? In any case, she wouldn't put me on Adriamycin with Herceptin because both have been known to potentially affect the heart. Although it sounds to me like the percentage of people who get affected long term with either Adriamycin or Herceptin is very, very small and I am not losing any sleep over it. I can't worry about what hasn't happened yet and may never happen.

Sorry I am a blabbermouth today. I think I had too much caffeine lol!