New to this site and starting treatment this week

tougherthanithought · July 2009

tougherthanithought · July 2009

Hi everyone! I joined this site about a month ago, but have never posted...I just have been reading many posts and trying to get as much informaiton as possible. You all seem so supportive of one another, and thought that this was a great group of people to connect with. (felt like I was eavesdropping by just reading and not posting, so I though I'd introduce myself Laughing

I am a 38 year-old married, mother of 2 young children, and am currently in what I call the 2nd phase of this ordeal. Phase 1 was the surgical portion. (I had a bilateral mx w/ immediate reconstruction on May 22nd)

I will be starting chemo this week (4 AC, followed by 4 Taxol/Herceptin, with Herceptin every three weeks for the next year.) Last week I had my teaching appointment with the nurse oncologist, and I feel like I was overloaded w/ information.

I am aware of the many side effects, and realize that I may experience some or all, but can't be sure until I start. Any advice, or tips anyone can share about how to deal w/ all of this?

kfinnigan · July 2009

Hi! You have come to the right place! There are so many women with such knowledge and great advice. I wish I had posted earlier while going through chemo as I know it would have helped me. Do you work outside the home and how old are your children? For me, I work outside the home and while going thru the dose dense A/C I had to take off about a week after each dose. Everyone reacts differently so just listen to your body and give it what it wants. Also, coworkers arranged for meals for me and I loaded up the freezer, which was such a blessing. Hopefully you will have some help with your kids.

I don't know how you feel about a wig, scarves, hats, etc. but for me, I bought a wig before chemo started and before my 2nd A/C my hair started coming out so we shaved it.

Look over these boards, there are threads out there with the answers you are looking for and you will find others going through treatment at the same time and that helps. Best of luck and hugs to you.

arnie · July 2009

Hey there tougher! So sorry you had to join us...but now that you're here welcome! I agree with kfinnigan...you've come to the right place! The ladies here are great with advice, encouragement and on some threads...laughs. (Which I need to get through this) I've already had the 4 AC and just started the 1st of 4 Taxotere 2 weeks ago. It's doable. Drink lots and lots of water to keep yourself hydrated and try to get plenty of rest.

I had my hair cut really short before 1st AC...that way when it started coming out it wasn't as drastic. I'll tell ya what, showers are a breeze since being bald...my biggest chore of getting ready is which hat? There's a couple of sites that help with head coverings... 1 is http://www.franceluxe.com they give every woman who contacts them a head covering for free. Another is http://www.heavenlyhats.com . Hope this helps.

(((((((((((hugs)))))))))))) janet

magentagirl · July 2009

There is a list of things to have for going thru chemo that I got from this site. The most helpful thing was STOOL SOFTENERS. And I don't believe that any of my caregivers ever suggested them but it is good to take around infusion time, because, otherwise, ow. Also, a friend of mine suggested I always have someone there with me and that was really helpful. One time I was told my insurance had been discontinued (it was a mistake), but I completely fell apart and was so glad my friend was there to help me with phone calls and getting the HMO pharmacy to give me one dose of the post chemo drugs. It also can just make everything less scary and maybe even fun. So, all those people who ask-what can I do? You can tell them they could keep you company during chemo-only a few of them will actually step up to the plate (other then family). Lastly, I wish I had sucked up to the chemo nurses more-all though they should be taking care of us-i got on their 'wrong" sides by asking too many questions. They might have taken it better if I had softened them up with cookies or flowers like I noticed others did.

tougherthanithought · July 2009

Thanks, kfinnigan, arnie and magentagirl for your reply! I'll have to spend a little more time searching for existing posts that may help me.

I do work part-time, but only have been back for two weeks since my surgeries. I plan on just playing it by ear, and if needed, reduce to maybe one day a week, for a few hours, or stop altogether. Just have to wait and see how I feel.

My children are 5 and 7, and they are really concerned about my pending hair loss. I hope that doesn't freak them out too much. I do have a wig lined up that should be ready a few days after my first treatment. I plan on shaving my head when I go to get the final fitting, b/c my hair is pretty long, and I hear it is a little less traumatic if it is really short or shaved when it falls out! I did also register for heavenlyhats, but I'll also check out the other one. Thanks!~ (I am looking forward to quick showers, and not having to blow-dry and flat-iron my hair everyday, though Smile

Thank you, again...this is a great site!

Wish me luck Thursday!

arnie · July 2009

Will be thinking about you Thursday! Put you on my calendar... It feels empowering when you tackle the hair thing before it starts falling out... Best wishes to you and yours...

(((((((((hugs))))))))))) janet

NatureGrrl · July 2009

You're in the right place... loads of information here!

You probably will get some of the SE's but it's unlikely you'll get all -- but it's really and truly a crap shoot. I've been braced for things I didn't get and got things I didn't expect! So as others have said, be prepared to listen to your body, don't hesitate to call your dr./ask questions/let them know if you have concerns, and post here any time!

I finished up AC 4 weeks ago and had my first taxol (12 weekly treatments) a week ago; I hope to start herceptin (a year's worth) tomorrow. People I didn't even know horrified and scared me with the stories about AC. Stupid people! Not one of them had ever HAD cancer or AC! Yes, it's hard, but it's doable. There will be days when you feel like it isn't -- we're here for support and reassurance. I had some appetite, nausea issues, but my biggest complaint was the fatigue that built after every treatment. It DOES go away! Hang in there and come here and complain, cry, whatever you need, whenever you need it.

A couple of things that really helped me -- take it or leave it! This is just what worked for me:

When I got really nervous, I took an atavan. Usually the night before a treatment but there were a few other times when anxiety took over and the atavan took the edge off. I still have most of my original script so I haven't used them a lot but I'm glad they're there!

I kept anti-nausea meds ALWAYS with me, just in case. I only had relatively mild nausea and no vomiting but the meds were my insurance.

I took generic Claritin (the non-D type) to prevent aches and pains from Neulasta shots (common with AC to build up your white blood cell count). For me, the Claritin worked WAY better than pain meds and it seems to help a lot of people but it doesn't work for everyone. I took them nightly for the duration of my AC. I had really bad pain with my first Neulasta, started taking the Claritin, and had NO pain from Neulasta after that. It can't hurt, as my dr. said.

Drink lots and lots of water. My goal is always 96 ounces a day. Some days I don't make it but most days I do. Keeps you well-hydrated (important all on its own) and also helps with some of the chemo SE's, or so I've heard.

Hair loss: I was told it would start 3 weeks after my first treatment. Fortunately, someone on these boards told me hers started 2 weeks... I got my long hair cut short. Sure enough 2 weeks after my first treatment, I pulled out a nice handful of hair and cried. I immediately got it shaved because I knew for me that would be easier than pulling out handfuls of hair for weeks, and would look better than the sparse, thin clumps of hair, that would just make me feel like I *looked* sicker than I felt. But do what works for you. For me, taking control of it (instead of letting the chemo control it) felt good. If you do decide to shave, and this fits your personality, make a game of it! Some women have had a party of it and done mohawks and stuff until the hair is gone, and made it a fun experience. If your family is up to it, it's something you might want to consider. I don't have young children and I don't know how yours will react but kids tend to take things in stride and tend to respond to how adults accept things -- the neighborhood kids here have said things like "what happened to your hair?!" and then accepted it readily when I explain in simple terms. The little ones have been the best -- give me a hug and then proceed as if I'm completely normal. Gotta love it.

Up side: You won't have to shave your legs or underarms for weeks! My legs have never been so smooth!

I did scarves for awhile but it got too hot and one day I pulled it off and haven't looked back. For me, wigs were even hotter so I don't have one. I have a couple of hats I wear when I'm out in the sun but otherwise I go bald. I'm not lovely but I find I get way less looks bald than I did with scarves, and the looks I get are more understanding and friendly. Do I hate it? At times. But I can't stand things on my head (even in winter) so this is what works for me.

Eat small meals more often -- keeping a bit of food in my stomach helps with nausea. Eat what sits well for you, and don't worry too much about health and nutrition -- do your best on that score but sometimes the healthier stuff just won't sit right. Cream of wheat has been my go-to meal I also found that real ginger ale (not "ginger-flavored") and ginger candies (check out your health-food stores) were really helpful.

Accept help and ask for help when you need it. That can be hard, especially when you're geared in to being the caregiver (and what woman isn't?!) but it can make a difference. And, it not only helps you, but it helps the person who helps you -- it's a really helpless feeling to sit around and watch someome you love go through this -- so it feels really good to be able to do something for them. So do let people help.

Don't be afraid to say no, don't be afraid to put your rest/health first. Don't worry, you won't be doing it all the time (I am caregiver for my 89YO mom, so she's often the focus and I know how hard that is to change), but sometimes I just have to put myself first. I've found if I'm open and honest with people, they understand. With one exception (a relative), but some people are idiots

Something I wasn't told much about: steroid SE's. I assume you'll be getting steroids as part of your anti-nausea meds, and maybe for a couple of days after in pill form. I knew they might keep me awake but I wasn't prepared for how aggressive they made me feel. It generally only came out when I was driving (good thing people couldn't hear me swearing at them!) and it appalled me more than a little! (How can people stand to take steroids voluntarily?!). They also turned me into a chatter box (you're probably looking at this post and thinking, what's new? but truthfully I'm a relatively quiet and peaceful person, except when I write). Some people get hyper; steroids can keep you awake or wake you up (WIDE awake) at odd hours. I just rolled with it. Fortunately it passed as soon as I quit taking them. Unfortunately, that's when fatigue caught up with me. I had to rest/sleep a lot for about a week after treatment (the last treatment, I was taking daily naps for 3 weeks, but no matter how tired you are or aren't, it does get better). Do what feels right for you.. It's frustrating (or was for me) to feel tired so much but when I listened to my body it did help.

Sorry this is so long. You probably know most of it anyway. Just thought I'd share my experience in case it helps.

There will be days you want to cry (I had one yesterday) and days you feel great (having one today!). The good days are a real blessing. Get lots of hugs, hang in there, and be gentle with yourself!

hugs,

Carol

cbm · July 2009

I can't add much, but here goes. My hair came out all at once one day in the shower; I had cut it short but there was still plenty. I put off shaving it and wished I hadn't.

Wigs--the lightweight synthetics are great. I couldn't stand the maintenance on the real hair one I got. Also Susan Beausang makes a little scarfy thing that I found really easy to use. Wig stores also have cap/scarves that are already tied.

Carol is right about the steroids; I negotiated my steroid dosage--I did not take the dex pills in between treatments. Still, by the time I started Taxol (and had them cut the infusion steroid way back once it was certain I wasn't going to have problems with it) I had steroid flush after each treatment for two days. It looks like some of the described s/e of both Tax and Herceptin, but it's from the steroid. Went away on its own by about day 3 for me and I didn't feel it; my husband pointed it out. I used Ativan to sleep for the first week of each treatment and then during Tax for the first three days. For me, the two days right after chemo were the best days so I scheduled treatment for Fridays, giving me the weekend with DH. I worked maybe half time, not all all during A/C.

During a/c I lived on watermelon, real (not diet) ginger ale, V8 juice (both vegetabel and the fruit one), mashed potatoes, rice, unfrosted brown sugar pop tarts, and one of the gatorade-like vitamin water drinks. Hydration is the key to everything; I was able to eat watermelon no matter what an kept copious amounts inthe fridge at all times. Taxol just makes stuff taste funny so I went back to normal eating, sort of. With both, had no taste for sweets; couldn't look at dessert

Once I ended Taxol, about 5 to 6 weeks later, the steroid weight came off all in one week, about 5 pounds for me. I didn't try to manage wiehgt during chemo.

I used a water-pik after eating anything at all; do not underestimate oral needs. I used biotene toothpaste and mouthwash and managed to avoid all but one tiny mouth irritation. Avoid thrush and mouth problems if you can; it just makes eveything harder.

I invested heavily in sanitary wipes and went though millions of them. I carried them everywhere. I didn't want any kind of infection and I was aggressive about avoiding germs. I premedicated with Advil before Neulasta and never had pain. I ate pop tarts before chemo and never got indigestion or tummy upset, not constipation or diarrhea (I think the watermelon really helped on the constipation).

I got physical therapy to avoid lymphedema and scar tissue adhesion beginning right after surgery; my p/t also gave me infrared treatmen to my neck, scars, hands and feet and I think it really helped avoid much neuropathy. I made a huge mistake and gave myself a pedicure and got an infection from the resulting ingrown toenail. Keflex; lots of Keflex. Not fun.

I hope this helps; my husband was the regulator of all meds and details; I logged in each and every blood test and med and really managed everything I could. It sounds obsessive and maybe was but I was my own advocate.

I caught nurse hanging wrong bag twice; they do make mistakes I wore a name tag after that.

I hope you do well; it is much more manageable than you think. I heard horror stories but none of them happened to me. None of this is pleasant but it is so much better than it used to be!

Prayers are with you!

C

lovinmomma · July 2009

Hey there. Sorry you had to join us. I was on chemo at age 41. I did AC for 4 times, every 3 weeks and Taxotere the same thing. I had a 5 yo and 6 yo and 8 yo(plus a few others) at the time of it. I cut my hair short with my first AC. When my hair started fallinmg out, I let each of the kids have a turn witht he buzzer to help cut the hair off. They thought that was great. I never did wear a wig, I did hats and scarves. I would think a wig would be so hot in the summer. The other thing I let the kids do was use masking tape on their hands to help get all the little hairs that were still on my head. They thought that was fun to stick tape to moms head and pull it off.

I did my chemo on Thursdays so that I had my most tired on the weekend when I had help. On the day I got chemo I was usually in bed by 7 or 8. The next day I was up later, but day 3 i was back in bed by about 8 and then I was doing good. Do the meds they give you to not be nauseated. Stay on top of it and you will do much better. I onloy did the compazine when Ineeded it,but hte others I did for the days they prescribed them and I did very well.

Please ask if you have any questions, or pm me if you want.

tougherthanithought · July 2009

Thank you, everyone, for all of the advice...i think I will print this out and refer to it if needed! And I plan to come here often.

I hope you are all having a good day Cool

Anonymous · July 2009

tougherthanithought,

You will find more strength than you ever thought you had - that is so true, I think lots of women have said so much and covered so much here for you already. I can only add a couple of things, I have 1 more tx of DD 4AC & 4T, will be done 7/20. These women are all great, I've posted on threads with many of them and love them all, you'll find the same. I read some of the other months chemo threads as those women were ahead of me and I could gain advice ahead of time. I bought a wig, never wore it (headcovers.com is a great site). As far as your children go, mine are a little older (middle school), but I think you will be surprised how accepting they are of your baldness. It's the adults you might find will be obnoxious. I can't tell you how many times I've been out and had adults stare at me and then continue to stare, children will look and then look away (bless their hearts), I think they are just more matter of fact. Your kids will bring you strength though this, you will be amazed! And whenever things seem tough come here and to your family, sometimes I thought it would never end but it is for me now. I also have my exchange surgery scheduled for 8/10. You will make it through!!!! Keep your eye on the prize. HUGS, Dawn

magentagirl · July 2009

Tougher, good luck on Thursday! I thought of a couple of more things I wanted to tell you about. One of the worst things I had to deal with during chemo was ATIVAN WITHDRAWAL! be careful with those pills. I was just using them for sleep. but it was every night. A nurse told me I had to stop taking them every night or they wouldn't work during steroid time. well, long story short, she forgot to tell me not to stop abruptly and I was very ill (severe headaches, heart palpitations, high BP) until I thought to go on the Internet and found out that stopping abruptly can kill you and/or cause convulsions. It took me months to taper off with the help of an addiction doctor! Sheez. The other things are CaringBridge.org where you can set up a free website to let people know how you are doing and Chemo Angels where you sign up and then get little gifts and cards and encouragement. Both were very, very helpful. Best of luck!

NatureGrrl · July 2009

I just want to add one more thing... DON"T be afraid to ask questions, call your dr., etc... I don't hesitate to call because I don't want to neglect something that could be significant, but I also feel like I'm "bothering" them if I call once a week. (I also come armed with at least a few questions before each treatment, it seems, usually minor and quick, but things I want to know -- and YOU are your own best advocate, so who better to ask the questions!).

But this week has been an anxiety-ridden one for me with some unexpected SE's (durn steroids! durn chemo!)... in the middle of crying and feeling terrified Wednesday just before my chemo (not afraid about the chemo -- I was facing possible chest blood clots and some other stuff) (after testing, all is ok!), I talked to their therapist (see if your oncologist has an on-staff therapist -- very helpful!) and she reminded me that 1. nothing is too small to call or ask about -- we aren't expected to know what is normal and what isn't, that's for the dr. and nurses to judge, and that I should always call with concerns, and 2. as much as I was feeling like I was calling too often with maybe once a week concerns, they have people that call (and stop by!) 4-5 times a DAY. And that's ok, too. That made me feel tons better! A couple of the nurses also pulled me aside at various times (I had to go back in yesterday) and told me to always, always ask if in doubt. That was also very reassuring.

Doesn't hurt that the staff there also gives out hugs freely!

If you're like me you know your body really well... and suddenly all sorts of things will be happening that haven't happened before, and that may or may not be "normal" for chemo, but aren't normal for us! It can be really confusing. So if you can, take a lesson from what I learned, and don't be afraid to ask... Even though I don't have a caregiver, I have a great support system (did anyone mention that? gather your support system around you -- friends, family, dr. and staff, therapists/counselors if you need them, support group, whatever will help you!) and I count among that incredible group the staff at my oncologist's. They are a terrific, compassionate, warm group. I really don't think I could handle this if they were anything less.

And the women here are amazing, too... I learn so much here, and get so much help and support!

For me the first AC wasn't bad -- I got hit by more fatigue than I expected but then it lifted and I had a couple of really strong weeks before the second treatment. I hope yours went well, do let us know how you're doing! hang in there! You can do this!

hugs!!

Carol

PS Don't be afraid to take meds to ward off any possible nausea (or any other SE's) -- I'm not a big meds person but I hate nausea and I was told it was better to take the meds at the least hint than wait for it to get so bad that it was harder to control. You may not need to do that at all -- I only did in small ways -- but just thought I'd pass that bit of wisdom on.

RuthieRR8 · July 2009

Hi Tougherthanithought,

Just had last chemo last fri. Best advice: go shopping. Get an arsenal of things- this is a result of many of the wonderful items on the board. Buy stool softener, Colaise, something for diarrhea, water-drink,drink,drink. Gold Bond powder and Desitin for any possible itches. Ask dr for anxiety sleep medicine, just to have it. I never had to use it but felt better knowing it was there. Drink grape juice and V8 fusion every day. Buy Ensure for those times you don't feel like anything. My blood tests always came out good before up coming chemo. Ice cream...chocolate of all kinds actually had some taste. Chicken noodle soup-strengthens and you can get it down easily. First 10 days after chemo were difficult-rest whenever you can-you will be forced to, anyway. Buy wigs and a couple of hats. Shave head before the loss gets too painful. Tee tree oil for your nails and apply daily if you can. Buy things you may feel like eating. I was always hungry believe it or not, but was unable to eat much so indulged in choc chip cookies which didn't taste too much like dust. My skin was always dry so slathered on vitamin e and face cream every day. I was advised by a friend who went thru' this twice to drink, drink, drink. I never went anywhere without anti-nauseous med, water or gum. My eyes watered a good deal-eyewash helped 3 times a day. X strength Tylenol was what i took for pain after neulasta-not sure if the neulasta was worse than the chemo. Hope this helps to arm you for what is do-able. 5 and 7 year olds can be very helpful, too, so let them help you. It will be good for them to feel needed and assure them that your hair will come back and that everything is temporary and things will be back to normal before you know it. Keep checking this site-i found it soooo helpful for s/e's and other experiences and help in all areas. Knowledge truly is power. All the best to you-i know you can do it!!! It is do-able!

Bono · July 2009

Good Morning,

I too, am new to the site. I am a 2+ year survivor and was diag at 39. I have two children that were 7 (girl) 4 (boy) at the time. It was difficult on them when I shaved my head, but I too would suggest cutting it before it hurts. Some good advice I got when facing chemo was to eat things that I wanted. I didn't have much of an appetite, but watermelon did help. Remember to drink alot and to take your anti-nausea meds before you experience nausea. I did Neulasta also, and it was difficult at times and I also needed help with the kids, so don't be afraid to ASK. Usually my friends all would say they wanted to help but didn't know how, so I would ask them to take the kids to the park or for a play date to get them out, and it was a blessing. Meals ahead of time sure made it easier on the people caring for my family. Good luck to you and prayers and hugs and God's love to you and your family. Keep us posted.

tougherthanithought · July 2009

iHi everyone! I finished my first AC yesterday at around 3pm. Even though they gane me Aloxi iv for nausea as a pre med, I ended up taking a zophran about 6pm b/c the neusea was really starring to hit hard. I ended up getting sick twice that evening, so I called the Dr. He called a Rx for Ativan and Decedron. I took them and I didn't get sick again, so I guess the worked. He told be to take more in the morning, too, which I did.

I know the feeling of nausea all too well...with both of my pregnancies, I was nauseous from moment one, to delivery! Boy, did that suck! My Dr. wouldn't give me any anti-nausea meds, b/c I had been gaining the minimum amount of weight.

Hopefully with this, we can experiment and find what works besr for me. At this point, I'd rather have the fatique and just try to sleep Smile

cbm-I'm taking your advice about the watermelon...it's the only thing I really feel like having this morning, and it's not making me feel worse.~ Thanks!

Dawn -Good luck with your exchange. I guess I'll be picking your brain again when the time comes for me! Did you ever get used to your tissue expanders? I completed my expansoins (I like to call them "fill-ups") about 3 weeks ago, but they still feel rather annoying, I porbably won't have my exchange until early 2010.

Magentagirl Yeah CaringBridge is great! I had never heard of it, but my SIL is a pediatric oncology nurse, and she told be about it. I set up a page and it's been the best thing for everyone. It allows me to updated it and not have to explain things over a million times.

Naturegirl -Like you, I ask a lot of questions, too. Ihave my little notebook and write down every medication down. The nurse was convinced I was a teacher!

RuthieRR8 -I just bought a huge container of chocotate ice cream (for the kids, of course Wink ) but that may be something that would sit well with me...cold, smooth, chocolate...I think I'll give it a try later!

Hi Bono Thank you for the tips and prayers...always appreciated,

I hope everyone is having a good day, Smile

Sherrill

BrittaA · August 2009

Hi tougherthanithought,
Thinking of you as I read this thread and hope that your treatments are going well. I just wanted to give you some support and follow up. I am a cancer survivor and my father battled cancer for 8 years before passing in 2007. If you ever need resources about cancer treatments and side effects or even prevention please reach out to me. As a caregiver to my father I found little information on the side effects of cancer treatment on the hair, skin and nails so I started a blog, www.cincovidas.com, to give caregivers and patients a resource to expand the information they would receive from their doctor.
I hope that it can be of some help to you as you go through chemo.
Love, strength and survival,
Britta

BrittaA · August 2009

Hi tougherthanithought,
Thinking of you as I read this thread and hope that your treatments are going well. I just wanted to give you some support and follow up. I am a cancer survivor and my father battled cancer for 8 years before passing in 2007. If you ever need resources about cancer treatments and side effects or even prevention please reach out to me. As a caregiver to my father I found little information on the side effects of cancer treatment on the hair, skin and nails so I started a blog, www.cincovidas.com, to give caregivers and patients a resource to expand the information they would receive from their doctor.
I hope that it can be of some help to you as you go through chemo.
Love, strength and survival,
Britta

New to this site and starting treatment this week

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