Starting Chemo March 2015

avmom

hey, Jackbirdie. I'm taking colace, too, but that's a prescription. I did forget to add, I'm also now taking a product called Lax a Day in the morning. It's a dissolvable powder. So, I take Emend, Zofran and dexamethasone starting on infusion day as antiemetics (with only Zofran continuing afte day 3), and Sennakot, Lax a Day and colace to keep my bowels moving. So far, this is what we are trying for me. Your mileage may vary - everyone is dfferent. (Except maybe for losing your hair on AC - as far as I can see, that seems to be a sure thing.)

I guess my best advice for the first round of chemo is to keep your cancer centre on speed dial. They do want to help you manage side effects, and can make sure you have prescriptions as needed.

Beachbum1023

Infusion headaches? Try taking a freezer pack to put behind your neck during the infusion. That worked for me. Keep going Ladies, you got this! I always tried to take something special with me to my infusion, kept me busy and it was something to look forward to

Jackbirdie

ahhhh Avmom I forgot you were in Canada. We can get colace otc here. It doesn't matter, as long as you get it, right? Your bag sounds a lot like mine. Hee. Except I start taking the dexameth the day before and the morning of,in the bag,when I get home, and the next two days. Makes me absolutely crazy!

Btw, if it's helpful to anyone, the compound on my otc "colace" stool softener is Ducosate Sodium, 100 mg. I take 2-3, with 1 Senekot, usually on an empty stomach, usually before I start having a problem. Like if I'm having any anasthesia (port placement?) or if I have been taking pain meds regularly, or chemo. They all tend to stop me up

PrincessOfMeh

Supernanny, I don't know if it's on the master list linked earlier, but I got motion sickness bracelets, which are about ten bucks at the pharmacy. I have a nervous stomach under normal circumstances and these circumstances are far from normal. Basically, anything that might help, I'm a fan. :-D I also used the Biotine mouthwash after brushing my teeth (with Biotene toothpaste) last night and was amazed. Not that I have mouth sores (yet), but I can't use regular mouthwash (alcohol is drying or something?) so Biotine, it is! Refreshing without tasting medicine-y. (Word of warning: my taste buds haven't run riot on me yet.) Plus, I rinse with water/baking soda every time I go to the bathroom, which is often considering I'm drinking oceans of water.The master list is really quite helpful, though, and very good!

I too work from home and I'm very concerned about chemo brain when it comes to work. To write well, I need to be mentally sharp! I've talked to my editor and other writers I've hooked up with as critique partners (and friends) about what's going on and they've all been very supportive. I expect I'll be slower, probably a lot slower, but still hopeful I can continue. My editor is the absolute best, said 'honey, that's what you have me and the rest of the editorial team for." LOL

Katy, I barely touched my chemo bag and was laughing at myself about it all the way home. Gotta love smartphones and apparently, I'm going to develop a serious devotion to mine. I work from home so never messed with ours much, haven't figured out all the bells & whistles, but oh, I am loving it now!

My MO, curiously, was all about me staying on my regular vitamin regime (multi, calcium supplement, 400mg vitamin E), but was highly no about adding lysine. Not sure what that was about, but she's the expert. I chose her, very carefully, so I need to listen and trust in what she believes is best. (FWIW, my mother has osteoparosis -- which I can't spell -- so I suspect that's why she still wants the calcium supp, which I also suspect will totally be a non-issue for me given the cottage cheese & yogurt for protein.)

Meme, I'll be sure to get a pic of my smut shoos for round 2. The shoes aren't water/rain-resistant so I made them, really, only for the convention & don't wear them regularly. Gave my spirits a boost during the whole process. I also took my t-shirt quilt. About half a dozen years ago, I gathered together old t-shirts. When you're involved in as many programs as I've been in, you seem to collect at least 1 shirt (if not more) from each and I'd gathered quite the assortment of vacation/concert/etc shirts too so I sewed blocks of the logos into a very basic tied quilt. I took that with me, which also gave me a nice pick-me-up. Good memories and reminders of wonderful friends in each block!

Anyway, I went to bed way early so now I'm up way early on this, day 2 of my first round of AC. Still feeling fine, though I expect that will change (and rapidly) once I go off the steroids (day 4). Getting my hair buzzed off later this morning & my wig cut/styled by my hairdresser. I'm not a prissy woman by any stretch, but I'm still expecting the morning to be emotional. I've never worn my hair shorter than my shoulders, ever in my life, but trying to focus on the positives -- a new adventure for me! Who knows, I might like short better.

Sorry about the saga-length post. Sometimes I think without you guys I'd go nuts. Well...nuttier, anyway.

shaz101

Boy our members are growing quickly, that's really sad, but I'm glad we can all help each other. I've had a great day. I've been going through all of my clothes and bagging a lot up for the local op shop! I feel the need to improve my image with some nice clothes. 

I wonder why in America they separate some of the chemo where I'm having the 3 drugs at once. Do any of you know why you don't have them at the same time? Is that why I seemed to get so sick compared to how I perceive the rest of you are going... 

shaz101

I love my smart phone too, I take my Samsung tablet to chemo. It keeps me busy. I can watch you tube, read a book or play on the internet. 

Jackbirdie

Princess Meh- totally agree with you about trusting your team and following their advice. There are seemingly endless subtleties within the science and art of cancer treatment, not to mention the individuality of each of our cases.

I'll be thinking of you at your hair appointment. It's going to make a huge difference that you have an experienced hairdresser "who gets it" on your team. I know you will rock the with and without wig looks

Jackbirdie

Shaz- a very good project. Out with old and in with the new. A few pretty new things can never hurt. As I've mentioned, I've never been "that kind of girl". My mother was a spectacularly beautiful and elegant woman. I seem to be channeling her now (though a poor imitation in comparison to the original article) and it does make me feel better to be turned out nicely, as they say. 👠👠👄

PrincessOfMeh

I'm a fan of treating yourself with clothes, etc, too! A friend who is a BC survivor recommended getting dressed up (or as dressed up as I tend to get) for my treatments and she was so right! I felt good about myself, more confident. I'll have to let my digital fingers do my walking soon, though, because I don't have a lot of button-up shirts and all save 2 of my for-wearing-in-public camisoles (I wear them under hoodies) have shelf bras that aren't so comfy. Why do clothing manufactures do that? The shelf bra in camis, I mean. A shelf bra is NOT a bra, not fooling anybody, LOL.

Trvler

" I'm mentally exhausted from changing MO and now this. But I have to advocate for myself right? It would be the difference of 2 added drugs, an added cycle and chemo after my lumpectomy instead of just before."

Meme: I am right there with you on this one. I have been to 8 doctors so far and I am meeting 2 more on Monday. I agree with advocating for yourself. Sometimes I feel like a number in a cattle field.

Super: I am also worried about how to go through this with my kids. I have two daughters ages 9 and 11 and they are driving me crazy. The older one has ADD and sometimes I have to tell her 30 times just to brush her teeth. She gets stuck. I get exhausted NOW from managing her. I can't figure out how I am going to go through chemo. And when they fight and scream at each other, I feel so stressed out. I am seeing a counselor to help me cope with all of this but I had to cancel my appointment this week to see a doctor. How old are your kids?

There are some threads on prechemo tips and nutrition. If you can't find them, let me know and I will search them for you.

avmom

Hi Shaz, I don't know about anywhere else, but TAC is a chemo regimen in some circumstances under the guidelines I've seen. In my circumstances, the dose dense regimen of 4 AC followed by 4 T is considered the most aggressive regimen possible, so it was recommended. The side effects are no fun, whatever regimen you are on

Trvler

Italy: I honestly think it is all up to the doctor what cocktail you are given. Some doctors are more up on the latest theories and practices than others.

I have to go get 3 or more biopsies today. NOT looking forward to it. Trying to decide if I want Xanex. Maybe not. I want to be able to take a painkiller if needed.

Also, my daughter has been home sick for 2 days already and she is still sick so I am going to have to take her to a friend's house while I make the trek downtown (which should take about 1 hour).

rleepac

I can't even read all the posts to catch up righty now. I am having such severe bone pain in my back and hips right now. I did take the Claritin for 4 or 5 says but I'm wondering if it was long enough? I'm in tears and I am on a heating pad and just took 2 pain pills. This is awful. Aside from praying...I don't know what else I can do. Please pray for me and if you have any advice, I'm all ears...

Bekah

Supernannymom

avmom and jackbirdie!

Thank you for the lists and advice! Since I work online - a notepad and pencil are my friends...great advice! I will begin a list, and then add to it. My next MO appointment is on the 24th, and as long as my skin graft is healed I have a strong suspicion that I will be chair the following week. She has already ordered all the labs, port and echo (I had the echo yesterday). She is just waiting for that wound to heal!

This is an amazing group- I am very greatful for it!!!

Supernannymom

Trvler - My kids are 18, 12, 10 and 8....and I homeschool them all....and I work full time as a college prof from home...it can get crazy now!!! I am working on having them in some activities, and getting their lesson plans/schedule together. They can work independently - the younger two need some extra help, but the older two, and my DH can help. This is such an uncharted road...I am not sure what/how the road ahead will look. On a positive note-their schooling ends in April and may - I usually just work on math and supplemental material during the summer so it is much more flexible.

Princess - Great tip on the chemo brain - since I work directly with students I may have my 18 yr old grammar girl proof-read my emails and responses for me to be sure they have clarity! I can just see it now "ummm Dr. H, I don't know what you were saying in the email you sent me!!!"

Jackbirdie - I love the feeling nice/dressed idea. I just ordered some more make up, and the former BC survivor who has a shop near my place (TurbanDiva) recommend that I use large earrings when I hear the hats/scarves!

So for now....getting the hair cut and donating the pony tail to locks of love, and this weekend time to start the chemo bag!

PrincessOfMeh

rleepac -- no words of wisdom, but so sorry you're hurting! Thinking of you and hoping someone has tips that'll help. Have you tried soaking in a warm bath?

Supernannymom

Rleepac - praying for you...

Leighrh

Hi Ladies! I am joining you unfortunately!!  I start AC on March 26th.  4 rounds 3 weeks apart then 12 weekly taxol.  I am still hoping all this is a really bad dream and I am going to wake up but so far.... nope!!  My MO is really great and thinks I will do fine through all of this...I am young and healthly... yada yada yada.....LOL    I am 42 with 2 boys 8 and 9.  I work full time and Crossfit at least 5 days a week.  My MO thinks that my exercise is great and that I should continue to do it so I am going to def try but I am super nervous about going to the gym bald!  That is my whole thing with this.. I think I can handle the other side effects... ITS THE HAIR part that is literally crippling me with fear!!!  I have found a wig that I like, Long like my hair now but I know there will be situations where I cannot wear it like the gym and that terrifies me.  It's a shame how all this makes you realize how vain you really are.  I never imagined that I was this concerned with my appearance or what other people thought of my appearance.

I have a question for you about the port... I am getting one next Thurs... Is it visible when wearing a tank top?  Just wondering if I will be able to wear my tanks this summer?  My boys play ball and I need to know if I should order the short sleeved shirts instead of the tanks so my big ugly port won't show

 

thanks!

rleepac

Leigh...when they placed my port, they asked me to mark where I wanted it. They told the the general area where they like to put it but I had some control over that. So if you have some tanks that you wear, you might take them with you and make sure the port will be under the strap (but not rubbing on a bra strap). They understand that you have to live with this thing and they want it to be as 'livable' as possible.

Having said that, I'm 8 days out from my port placement and I'm very thin. Mine really isn't that noticeable now that the bruising has gone. Hope that helps.

Bekah

BBwithBC45

I'm 45 and also was told I was "young and healthy". Right. Funny, I don't feel healthy (still feel very young though. )

Leighrh - losing my hair was also a very big issue for me, so I decided to try and save it using cold caps. I thought part of it was my vanity, but there are many more feelings coming in play here - we recently had a little discussion about it in Penguin Cold Caps thread.

For some reason my port (named Snoopy) looks a little bruised now. I'm on the skinnier side too, and in my case it protrudes quite noticeably.

BB

Italychick

I practically live in tank style tops and my port is placed so it is just under the tank top line. if my tank stretches, it can slip down a bit, so I just make sure I pull up the straps.

Leighrh

I am rather thin too so I am hoping it won't poke out too much!  Today in addition to mourning my hair... I am on to mourning the loss of all my good summer outfits.  It's hot here in Louisiana in the summer and I won't be able to wear my strapless stuff or my bathing suit...... Just more things to give up.....

marciabh

Hi Ladies,

Like all of you, I never thought I'd be joining this group, but here I am, and am glad to have found this support. I had my surgery yesterday (lumpectomy) and also port installation. (Is that the right term to use?) I'm naming mine PORTIA. But I already don't like Portia at all. I'm thin, and I have a big bulge. i also don't like the placement. i wear a lot of v-neck tops, and Portia is quite high up and will probably be visible with almost all of my clothes. Well, too late to cry about that.

We're all concerned about losing our hair, aren't we? There is a website http://www.hatswithhair.com/Wig-Made-With-My-Own-H... that makes wigs using your own hair. They actually only make the part that would show if you wear a cap, not the scalp part. Still, I'm thinking this might be a good addition to a regular wig, and might make me feel more like myself when I wear it. Also, might be cooler to wear with a light baseball cap or sunhat for walking or just being outside. Have any of you tried it?

I don't start my chemo until mid-April. I'm triple positive so will also need Herceptin. My oncologist is recommending Navelbine, which supposedly has fewer side effects and may not cause hair loss. Are any of you using it?

Thanks for being there!

Marcia

wpmoon

welcome to the new members! so sorry you're here, but glad you found us.

my acne/rash seems to be responding well to the antibiotics. still some bumps on my face, but they're not swollen or pus-filled. My OB is blaming the chemo, my MO is blaming the Lupron injection (the hormone injection to protect my ovaries during chemo and put me into false menopause during treatment due to my age - 27). So, who knows? The Lupron was a high dose, and I literally just started my last period that I'll have through chemo (Sorry if TMI, but we're also talking about bowel movements, so I doubt this is crossing a line) so maybe it was the Lupron. I guess I'll know after my second infusion if it happens again.

Yesterday and today I'm feeling pretty "normal", or close to pre-chemo me. I just want my body back.

Envious of all of you that work from home. It looks like I'm going to have to tell my job about my medical situation, or at least part of it, due to a scheduling conflict and my MO doesn't want to push back chemo (and neither do I, let's get this OVER WITH!) I had a meltdown at work on my lunch break last night because I'm not really sure what to tell them. I know I don't have to tell them specifics due to HIPAA, but I think they'll ask, since it's a new job and in training I'M the one who's supposed to be flexible with scheduling. Any suggestions?

Hope everyone is doing well.

avmom

rleepac, I hope you have found some relief. There was one day this week where the only place I was half comfortable was in the bathtub. I think I had three or four baths that day

Jackbirdie

oh, Bekah, I am so sorry! You havereally had it rough. I am sending you warm and loving thoughts and a very gentle hug. I will keep you in my thoughts the rest of today. If you have the energy later, please update.

rleepac

when I get home, I'm going in the hot tub for sure. Maybe DH will serve me 'dinner in tub' LoL

I had a small amount of relief for a while but the pain is coming back

rleepac

I've decided I'm probably not going to have 'good days'. It will be more like 'good hours' for me...

Italychick

Wpmoon, I asked my health benefits person at work, and she said that an employer is not required to allow time off for medical appointments unless it is expressly written in their employment contract. HR people typically never ask why you need to be out for a medical procedure, but other co-workers might. If they do, they are overstepping the bounds of the professional relationship. I wish chemo centers operated outside of normal 9-5 business hours Monday-Friday, but those hours and days are the only ones that my chemo center works. My oncologist said doing chemo 1 or 2 days either side of the 3 week window isn't that big of a deal, but stick as close as possible to the schedule.

I am like you, I am keeping my situation out of my work environment because I don't want people pitying me or questioning my ability to do my job.

I think you are doing Perjeta? I read on some forums that can cause acne. I did have one acne cyst come up on my left cheek, but I am not on Perjeta. I got cystic acne when I hit peri-menopause, but it went away at menopause. So I have a left cyclops chipmunk cheek. Lovely - will be even better when I am bald to go with it.

Rleepac, I wonder why they tell us to take Claritin the day of the bone shot, and four days after. People take Claritin for allergies all the time. The person who sits next to me at work alternates between Claritin and Zyrtec on a continuing basis, because she said if you take it too many days in a row, then it becomes less effective, I think if she takes it for a month straight. But I wonder why you can't take the Clairitin for 7-10 days if it helped and now you are miserable. I will put it in my notes to ask my oncologist on my next appointment. I have wondered about that myself.

Jackbirdie

my bestie just shared this yoga for cancer link which is taught by a bc survivor and focuses on loss of lymph nodes,peace, range of motion, recovery from chemo and surgery. I'm not sure if the mods will need to strip this, but here's a try:

http://yogauonline.com/yogatherapy/yoga-for-cancer...

You can also try going directly to YouTube and searching on yogaforcancer. It is very relaxing and balancing for me, even though I can't do most of it. I think breathing and listening and opening up to it are the most healing aspects anyway.