Anyone.Starting Chemo in October 2016?

Connie1230

I need to go back and finish reading posts but DeeMendoza, Senekot-S worked great for me for constipation. I have this weird body that has had problems while traveling before and have tried just about everything at one time or another. Senekot-S definitely has worked better than anything else. I believe that this combines both a laxative and a stool softener. Colace is just a stool softener. I don't remember what Miralax is and don't take my word on what the others are for sure...that's how I remember it but my memory has failed me before

One thing obvious about this journey we're all on, everyone reacts differently and has different side effects. There sure aren't any cut and dried answers to anything. So the fact that you're having earlier Neulasta side effects probably shouldn't be any big surprise to me.

I had my 3rd infusion today. So far so good but it's really too early to know.

VLH

GRACIE SAYS:

Welcome to the newcomers to our group! We're sorry that you find yourself here, but you're in the right place.

I feel especially bad for those of you going through the HER2 positive treatment since it makes for such a long day. I was just thinking that I'd made it through the day without feeling dizzy or queasy, and, yup, you guessed it. 8-P I need to check my blood sugar & BP since both have been affected by the chemo.

I had my wig fitting today. It should be here within a couple of weeks. I hope I made a good choice. One unexpected side effect I've noticed is that the bags under my eyes have gone from small carry-on to pushing-the-surgcharge-weight duffle bags in recent weeks. Since I had to quit my part-time jobs, I feel like I've gotten plenty of rest, but still look rough.

The stylist surprised me with a gift bag that they distribute for a local cancer group. It's a cute fabric bag & includes a coloring book & pencils, a book of word games, a little box of Tic Tacs, a blanket, a nice notebook / journal, a teddy bear, small bottles of moisturizing body wash & Biotene mouth wash (the latter for mouth sores that I'll probably get at some point), a hand knit beanie & a pair of soft, fuzzy socks. The lady putting the stuff together had chemo & these were things she enjoyed or wished she had during her treatment. So very thoughtful...

We're getting some wonderful rain, but, gosh, makes my Chemo / Fibro sleepiness even worse. Zzzzz...

Hang in there, Gang!

Lyn

Luwusu

I have just lost half my hair in one brush through

VLH

Boo, Luwusu! That has to be tough.

I had mine buzz cut to avoid that trauma. There were tons of little hairs on the towel today so I'll ask the oncologist tomorrow if she recommends shaving the rest off with an electric razor.

Lyn

VLH

Barb, have you been discharged from the hospital yet?

Lyn

Miles

Having your hair fall out sucks. Before finding out I had cancer my hair was 3" below my bra strap. I first cut it into a pixie cut, then once chunks of it started coming out I had it buzzed. The buzzed hair poked into my scalp and it was painful so I used an electric razor and shaved it. It feel so much better now that I have shaved it. My scalp still burns and stings but it is better than it was.

Barb- Sending you healing thoughts. I hope that you are doing okay. Miss you...

Connie1230

somewhere in these postings, someone mentioned problems in the nether regions. I had read in the tips for getting thru chemo that sleeping naked helped with this. I don't do that but I do sleep in a nightgown with no underwear and that has eliminated some of the issues. I also switched from nylon to cotton underwear I felt like a yeast infection was just starting and felt kind of swollen and slightly itchy with a slight discharge. That has gone away without any other treatment since I've done that. So you might give that a try when your period ends before taking my drastic measures.

The steroids from this treatment have turned me into a night owl. I even took a sleeping pill which allowed me to sleep,for a whopping 4 hours. Now, of course, I'll be good for nothing all day tomorrow.

Connie1230

I'm curious. What do most of you wear on your heads and where do you purchase it? I have a wig that I wear when we go most places. In the house, I wear nothing most of the time. But when we go for a walk, to the mailbox, just out and about in the neighborhood, I wear mostly tied scarves from headcovers.com. Some find really comfortable and some not so much. The chemo beanie type caps I can't hardly wear. They cover my ears so tightly that I can't stand them. Of course, I'm in FL in 80 degrees too which would make a difference. I do have a straw hat and beanie denim type hat but it's been too warm for that so far

chickdudefood

Connie1230, I am just starting to lose my hair and will be going to the barber sometime this week for the full treatment. I don't know how dressy you want to be when you go out, or how much you want to disguise the baldness, but my housemate, who will be 100% bald for life, uses cotton kerchiefs (you know, the ones with paisley and other patterns) to very stylish effect, low on the forehead and tied in the back. They are very informal (and cheap!) but I bet the cotton is really comfortable in the heat. He wears them to the gym so headsweat doesn't drench him and will be lending me a some (he has a vast collection, I get to choose as many as I want.)

Up here in Boston in our cold drafty house, and probably out of it too, I'll be wearing a cashmere cap and will probably be thrilled that it covers my ears and comes down onto my forehead almost to my eyebrows (or where my eyebrows would have been if they go too.) I wear glasses and they come up almost to eyebrow level so I think I may be able to get away without stencil/penciling them in when I go out, with wig or with cap.

Best,

Kate

Abracadabra

I'm back!!!!! Hello everyone, I missed you so much! I lost internet access on Sunday, and literally was going into withdrawal from not being able to touch base with you all!

So I was finally discharged from the hospital on Monday afternoon. I felt pretty rough when I got home, but after an amazing sleep in my own bed, and cuddles with my DH, DS, and Max the dog, I am a new woman!

I'll be continuing to take antibiotics for the next 14 days, which is probably going to delay my next chemo (Nov 14). I don't care ... I want to be clear of this mess, and I also want to get a port or PICC or anything to prevent my poor left arm from being poked any more.

After 4 days of isolation (with an extra hour thrown in because of the time change this weekend, grrrr!!!), I feel like a kid in a candy shop being back in my own life. Life is delicious! After breakfast, I'm going to go for a walk and smile at everyone I pass.

Have a great day, and thank you so much for all of your kind thoughts, prayers, and well wishes. I am so grateful to have you in my life!

Love, Barb

Al12

Barb, so happy your back and feeling good!

I'm back at work today I feel great but I do have a weird reaction to chemo that is coming out on my face. Under my left eye my skin is very red and swollen and now my left eye is swollen and red too looks like it's closing. I spoke with a nurse yesterday but she only told me to take benydril. I feel great after my 3rd round of chemo so this really sucks that I look like I was punched in the face. Has anyone heard of someone or are experiencing any type of skin allergy issues from chemo. I think thats what this is. I'm already trying to manage to look presentable in public without hair to have this to worry on top of it is a huge downer and is causing more stress then I need right now.

Alla

Connie1230

Barb, I'm so glad you're home. There's no place like home particularly if the alternative is a hospital!

Alla, someone has mentioned skin issues. I can't remember who at the moment but I thought it was on their hands. I can only imagine how this has to stress you out more. I hope the Benadryl works for you. See,s like every time we turn around, there's some other strange side effect that someone is having. Geez, isn't it enough already

Al12

so I spoke with the nurse and it seems that I am having an allergic reaction to one of the drugs either the A or C or the steroid. now that I think of it I had a small spot from the 2nd time I had chemo under my jaw. so now i'm thinking is def accumulating reaction. I'm just worried it will be worse next time. It doesn't sound as if they will change my dosage since they don't know which one is causing this reaction. All we can do is monitor it. My luck. I'm am an emotional mess and to top it of I'm at work but nothing will change if I was at home either. I just have to suck it up and this too shall pass.

deemendoza

Good Morning ladies,

seems like I only come on here to complain. Anyone else have a horrible metal taste in their mouth? I'm 5 days post 2nd infusion and this metal taste in my mouth is horrendous. I was told to suck on hard candy (lemon heads) but that seems to make my reflux worst (never had reflux until treatment started) my onc called in omeprazole 40mg 2x a day but that doesn't seem to help out either.

OASN: I tried the Miralax lastnight and I was finally able to go... never thought in 37years I would be so happy to have been able to used the bathroom.

Barb, glad your back home and on the road to feeling better will continue to pray for you and us all.

Miles

Alla: I hate that you are going through this! I hope the Benadryl helps.

Barb: I am so happy that you are home. I'm sure that Max and your family are glad to have you home. Enjoy your walk!

I hope everyone hangs in there today and can find something to smile about.

I am getting my second Chemo this afternoon.

(((gentle hugs)))

KLNiss

Connie1230 - thank you for being brave enough to tackle my nether region question. I have started doing that and it has helped. Going to talk to my onco about it on Thursday. Living in NY, I don't have any head covering recommendations since it is chilly here now and all of my caps are knit. hope you find something comfortable.

hugs to all - Kathy

DogwoodPos

chickdudefood: I like your approach to the yoga. I realize that you are a yoga instructor?! I have a few Rodney Yee DVDs that seem to work for me. I am interested in the streaming options.

I have chemo round #2 on Thursday of this week. My thoughts go out to all those there today and the rest of the week. I was pretty nervous about it until my hair started to fall out, yes-right behind my ears-a good friend who is also a licensed cosmetologist shaved my head. My husband did the same. And, then our kids, age 31 and 26 both did as well. That coincided with my Look Good Feel Better class which did make me look good and feel better. Walked out with all sorts of hats, make up strategies, and a turban on my head. Then, I immediately ran into someone I knew and thought to myself...I have a turban on my head...not really normal.

But, I feel good...that is very fortunate.

I want to see if I can lower my dose of steroids, too. Glad others mentioned this.

Grateful for this forum!

chickdudefood

DogwoodPos, my favorites are https://yogainternational.com/, https://oneoeight.com, and on the top of the pack, http://www.jbrownyoga.com. None of them are free. With yoga international and oneoeight, you can select the type of yoga you want, time, level, etc. I've seen a yoga for breast cancer on the oneoeight site but haven't tried it yet. J Brown offers several different timings of one yoga sequence, which is the only one he teaches, and if you read some of his site you'll understand his thinking behind this. I'll be going to a workshop with him here in Boston this weekend, assuming I'm still feeling well. I'm a real fan.

Several of my friends praise gaiam.com too, but I figure I'm already outlaying enough monthly fees. With J Brown, you buy once and then get a dvd or can download the videos.

I'm kind of fascinated by this hair loss thing so I'm going to wait a few days before going to the barber (I figure they know how to get a close shave.) I started shedding behind my ears during chemo #2 yesterday--first I felt a kind of tingling which I thought might be related to the first bag of saline but no, just hair loss right on schedule, and so of course spent much of my infusion time investigating back there, making piles of hair, and checking to see how solid the rest of my head was. My Look Good Feel Better class is on Monday so I'll be sure to do it before then.

Lowering my steroids dose seems so far so good. Still no nausea and I only had to take 1/2 a dexametha...whatever it's called with breakfast this morning. Last time I was taking 2 a day for the first 3 days after chemo. I feel like myself today, a real blessing. Of course if nausea starts, I'll be all over the meds, but right at the moment all is well. My big job today is hydration, which makes taking a walk something of a risk, but it's probably one of our last "warm" days so I'll at least fit in a half hour.

Barb, so glad you're back home. We were worried!

Alla, I'm with everybody else about the benadryl. This sounds really uncomfortable. Is there a backup plan in case your eye does close up? My skin is extremely dry to start with, and only getting worse with chemo, so along with hydration there's a whole lotta moisturizing going on. I have hand and body lotion in every room of the house at this point.

Love to all,

Kate

kshorten

Question is the reason for lowering you steroid dose to help prevent the sleeplessness and jittery feeling?

chickdudefood

kshorten, yes. I couldn't sleep, read, watch TV--I felt like I'd been invaded by aliens and/or had had 200+ cups of coffee every day. It became a real concern--I couldn't think straight and really didn't feel like myself at all. I was even wary about taking a walk by myself, and didn't trust myself to use a knife to slice something. Since the steroids are to prevent nausea, and I had no issues with nausea, surprisingly, since I get seasick easily and that's supposed to be an indicator for nausea side effects, my oncologist lowered the dose for chemo #2, which was yesterday. My regimen was chemo in a drip (I think the standard dose both times) and then 3 days on dexamethasone, two 4 mg tablets, twice a day, so 16 mg daily total. Today, I took half of one, so 2 mg only. I don't need to take any more unless nausea strikes, or any compazine or Zofran, unless needed. So far so good.

kshorten

Thanks chickdudefood, having my 2nd treatment on Thursday so I start my steroids tomorrow. My first treatment wasn't a real test because I had my port put in the day before and was taking Hydrocodone, but I'm really sensitive to caffiene have had any except what's in chocolate in 20 + years. Going to talk to them about it Thursday morning. Again thanks for the info. I too had very little nausea.

chickdudefood

kshorten, I'm always a little puzzled by the different protocols. You have steroids before, I have them during and after. Of course I see that our staging and overall chemo mix is different, but I wonder why the before/after steroid distinction. I'm very affected by caffeine too. I'll have a cup of coffee occasionally, but never after 11am. And not even chocolate after 8pm.

Connie1230

Deemendoza, for the metallic taste, my drs. recommended using plastic silverware. Also, don't use anything like a Yeti cup which is also metal. I know that's not much but it's all I know of. I hope someone else has more ideas for you. I go a few days with most everything's tasting like cardboard but not so much the metallic taste.

Alla, I can't tell you how sorry I am for your issues. I really cannot imagine how miserable you have to be. You have to be one very strong lady to stick this out at work. I really admire your strength

VLH

Yay, Barb!

I looked so mangy that I couldn't stand it and shaved my head before Chemo #3 today. My poor electric razor was not happy with the magnitude of the job and kept clogging up. The little brushes that came with the razor proved woefully inadequate. I ended up having to shave a little, pluck out little globs of hair with tweezers, shave a little more, lather, rinse, repeat. Took forever! Still some tidying to do it I haven't killed my razor. The top of my head looks okay, but the back looks weird. It's got little dimples and unattractive veins...looks nothing like the lovely, bald ladies ladies in the pink ribbon commercials!

I came home & slept over 2 hours on the sofa. It's unusual for me to sleep more than 20 - 30 minutes there so surprised me. Re: head coverings, I'm usually hot so haven't been wearing anything, but someone was in "my" chair at the chemo center & it was freezing in the area I chose instead. I had a pre-tied cotton scarf purchased at the wig shop, but wished I'd had one of the beanies I thought would be too hot. They had heated blankets that I've declined before, but welcomed today.

Luckily, I've not experienced it yet, but "metal mouth" is reportedly a common, but yucky side effect. Other than plastic utensils, I don't recall what others mentioned that helps except time. :-(

Lyn

Connie1230

chickdudefood, I have never heard that seasickness level was supposed to be an indicator for chemo nausea levels. Oh, I so hope that is true. If so, I should be home free (knock on wood---afraid I'll jinx myself)

Has anyone else been told this? I've got to remember to ask about this at my next appointment.

Miles

Hello Everyone.

I am jittery from my the Steroids I got today with Chemo #2...

I found out that shaving my head was a bad idea.. I now have folliculitis.. I only have one small bump that feels like a small pimple on the back of my head but the onc says it is follicultitis.

Fyi- for those of you who have already shaved your heads etc...

"What is folliculitis? Folliculitis is an inflammation of the hair follicles. Each hair on your body grows out of a tiny pouch called a follicle. You can have folliculitis on any part of your body that has hair...What are the symptoms? Folliculitis usually looks like red pimples with a hair in the center of each one. The pimples may have pus in them, and they may itch or burn. When the pimples break open, they may drain pus, blood, or both What causes folliculitis? It may be caused by bacteria. It also can be caused by yeast or another type of fungus. You may get folliculitis if you have damaged hair follicles. Shaving or wearing clothes that rub the skin can irritate the follicles, which can lead to folliculitis. They also can become blocked or irritated by sweat, (Coco butter)...or makeup. When the follicles are injured, they are more likely to become infected.You are more likely to get folliculitis if you (have a) lower.. ability to fight infection." (Taken from WebMd: http://www.webmd.com/skin-problems-and-treatments/tc/folliculitis-topic-overview#1)

My Onocologist said that it is better to just buzz your hair as short as possible and leave it. The discomfort of having the little hair poke into your scalp is better than the risk of infection. so I am going to let the spots that have hair grow... bummer.. If you have already Shaved your head you may want to check out the link above it gives tips on how to avoid getting Follicltitis... Good luck to everyone. I hope that you don't get this.

(Gentle Hug)

Luwusu

Thanks.I ended up getting it shaved yesterday. I picked up my wig, too. Up until now I didn't feel like a cancer person. Now I do.

Ella22

Luwusu- I too feel like it makes it real!

Thanks Miles I was trying to decide if i should shave my buzzed head, but after reading your post I think I will just deal with my buzzed hair

Nfullblume

Good info, Miles! Thank you. Shaving mine next Tuesday. 😜 Think I'll stick to a 2 on the clippers instead. I just dread the thought of all those little hairs everywhere. Hopefully the sleep cap will catch some.

Hkuester

Metal taste- last time I took off all my jewelry and used plastic utensils-at least I was able to eat a little that first week and then it went away. I have now heard sucking on carmels help. I will try this time. Chemo #2 is tomorrow. I am going to an outside event and it's windy,afraid to wear wig so I have a cute hat. Haven't left the house without wig yet and no one has seen my bald head except the poor girl at Great Clips that shaved it. I wear those tshirt hats in house all the time. Although my head is feeling dry and itchy, what do you guys do for that, any special lotions that work better?