Starting Chemo, November 2013 Group

smrlvr

Amazon I broke down and cried for an hour or so yesterday and today my headache is worse. So much for cleansing tears. What happened is similar to what you said about your son's class. A very kind hearted and well intentioned old friend of my mothers sent me a card to support me in this fight. She is an old friend of my mom's and has known me since I was born. So in the card she included a baby picture of me as well as my first grade class,photo, telling me what a strong little girl I was. Well, I just lost it. I just made me so sad.

Of course I couldn't have received the card on a worse day. My hair is falling out in massive quantities and I was ready to shave it all off until my hairdresser friend came over and said she thought it was too early. So now my head really hurts and I have yet to cut it off.

We all have our bad days.

audra67

Amazon-

Maybe the LUMP is taking longer to heal because of the chemotherapy. my infected arm from I.v. is still bruised and reddish and it's been 3 weeks! Your infection was worse! I'll bet it will just take longer to heal...and it WILL go away!!! BELIEVE!

Patalameda, Pompom, Paulette- Aren't we all on same schedule? How are you all feeling today?

I am using just Phenergan and Ativan this time and just the full stomach, lump in throat and tiny queasiness so far, I am avoiding the Zofran as my psychologist friend told me that it blocks serotonin to our brain which is our mentally feel good/sleep part...and I did have awful time mentally last round while I took Zofran religiously every 6 hours to prevent nausea for 6 days...so hoping to avoid that this time.

I have heard the Ativan helps with nausea also...and I do like the relaxing effect. Usually I don't even use Advil and am very ANTI taking any pills, but this is a different time and battle and I'm using all of the artillery available to me that works and doesn't cause more side effects.

Lorreymom- I got rash the first round on hips, hands only but the hip one took a full 2.5 weeks to go away and now just discolored area there...weird..My oncologist said hand and foot rash is common but he'd not heard of hip area..? It itched and hurt almost...glad it's gone and yours is going away.

We are snowed/iced in and watching movies all day...hoping all will be clear to get to DR Monday for neulasta...I DO NOT want low wbc again....I want ENERGY!!! HA!

ellischestnutgirl

Amazon,

I am so very sorry the infection isn't going away as quickly as you would like. It definitely is affected by the chemo and I am sure your cell counts have been affected by the cancer and the infections. The infections that people get post op often take longer to go away as your body is already under stress. Give it time, but be aware of any changes and call your doctor if you are concerned about anything. You will probable not run a fever if you are on any oral antibiotics.

I also wanted to let you know that some antibiotics also cause hair changes., My hair started to fall out while I was on Vancomycin in the hospital for a tissue expander infection and continued to thin out while I was on oral Zyvox at home for the same infection.

These infections and complications are so very frustrating. I keep telling myself that all of this crap is happening now because the worst will be at the beginning and it will only be able to get better.

I do feel blessed to be able to fight this thing, despite the fact that both the MO decided that the Herceptin and chemo were not necessary for my cancer. They went along with me though and I am starting with Quirky on Monday. I am also blessed to be able to have some insight by virtue of message boards. I don't have to be going thru this alone.

I know family helps, but it is not the same. I know my husband loves me, but he isn't a woman who just lost her breasts and felt like she was just given a death sentence. I know BC is no longer the same as it was even 5 years ago, but the initial diagnosis still felt like a death sentence to me. It took a while, and an very skilled and gifted Radiologist who told me upon seeing my mammogram and ultrasound, even before she did my biopsy," I am telling you now that this is not going to take your life. I do not want to have you go thru a biopsy worrying about that. This breast cancer will not take your life and I want you to know that 100%. "

She was the most wonderful doctor I have had the pleasure to have care for me and I will be forever indebted to her. She came in to do my second biopsy on her day off at 0600. It was the same day her father was going to have surgery. She saw my name on the list for scheduled biopsies and came in to do that for me. I hope you all have been able to come into contact with a physician like that.

Nurses....now they have been another story. I have had some very poor nursing care during this experience. I know haw things ar supposed to be done and it is very frustrating to see how nurses actually do things.

Please speak up if you are not getting what you perceive to be adequate care. Make sure doctors and staff wash their hands. Purell isn't enough, especially during this time of year. Purell must be rubbed in and allowed to dry on the hands, not just given a quick swipe. Use sanitizing wipes on things if your are in the hospital for anything and ask for a container of wipes for your room. Ask for a container of purell at your bedside and ask all visitors to wash their hands upon entering your room. Ask visitors to your home to wash their hands and have people stay away if they have any signs of a cold or flu.

Enough of a lecture. Please just take care of yourselves. Let other people care for you.

Gayle

SpecialK

gracers55 - if you look at my sig line you will see that I actually started on Femara.  My onc likes it the most of the aromatase inhibitors because it  seems to have the best track record.  I was on it for six months and developed a trigger thumb on my dominant hand.  I immobilized it but it was particularly painful and I could not comfortably write, use scissors or use a knife while cooking.  My onc switched me to Arimidex, and the trigger resolved.  I did fine for about a year, then developed a trigger on the wedding ring finger, one toe and a severe one in my left ankle.  Simultaneously my right knee swelled and became painful enough to receive a cortisone injection (ouch!) because all that was imaged was mild arthritis appropriate to my age.  The ankle and knee - because they were opposite made it very difficult to exercise.  That was in May and I switched back to Femara in the summer, but to a different manufacturer.  I am having no issues so far, aside from the normal amount of joint pain to be expected on an AI, which is taken care of with movement.  The knee appears fine, the cortisone injection has worn off, but so far so good.  I just registered for a 5k in Feb - keeping my fingers crossed.

Palameda

Yes Audra, you me and Paulette are in the same schedule. Where is our Florida girl? Haven't heard much from her, Paulette hope you're not having a hard time of it. I'm doing SO much better this cycle. I know I went into chemo in a bad state, so I can only guess I'm better this time since I'm stronger. I felt better in the few days leading up to Wednesday than I'd felt in months. Last cycle, at this point I was using every anti-nausea drug laying around: today, nada. Great big body aches, fatigue, and feeling mentally "not present" but I'll take those instead of nausea any day!

Amazon, please don't stress over your lump where you were infected. I sure know I refused to believe my initial infection was finally cured since I'd had it for months and the area was still so sore and swollen and I was still weak. But it was cured. Where I had my "little" infection from the cat bite on my arm I still have a lump the size of a bean on my bone. Just residual swelling since everything takes forever to heal. You're going to be all right! It's hard to trust and believe after what you've been through, but find a smidgen of faith and carry on.

Ugh, last night was an emotional wreck. I was coming down from the steroids and "dear" husband decided it was a great time for a temper tantrum that he blamed on me. He still has this image of me as a strong assertive in-charge woman. I can't get him to keep a consistent image of what I am right now in his mind.

My hair ended up looking so horrible. There were bits that were semi-long, but mostly you saw scalp. I looked like a zombie who'd been buried a while before coming back to life. Buzzed it down. Don't look TOO bad bald.

BigT16

Chemo on Thursday wasn't bad. Friday, I was able to go to work and enjoy my husband's office Christmas dinner. Today neulasta is kicking my butt. I"m back on the couch.

I haven't had a menstrual cycle since my MX Sept. 30th. Experienced the chemo hot flashes too.

Amazonwarrior

I want to share with you a special moment that I experienced today. My family and I went out to our favourite restaurant. This seems to be our weekly outing. So we got there, sat down and then I had this sudden urge to take my hat off. Mind you the 'hat' was really my wig that felt just like a hat that needs to be removed. Luckily, I stopped myself in the process, and saved the situation by not exposing my grandfather like scalp to the fellow diners.

QuirkyGirl

Amazon, waiting on my infected wound to heal proved to be far more taxing emotionally than surgery. It's tough to wait it out and see no progress. Try to focus on other things and be reassured that it will heal. I wanted to sass mt derm when she told me that but she was right. However, if there is a change in discharge, temp, color or pain I wouldn't hesitate to check it out. This is hard, hang in there!

My cancer center is about 3 hours away and bad weather is coming so we are heading there tomorrow to get there before the ice hits here... and there. I've stocked up on drinks for the hotel and home and my son says he's never seen that much fluid in one place except for a store. I plan to be Miss Hydration!

Palameda

Quirky, good plan for the hydration. I swear my SE are half what they were last time when I didn't worry about it! That seems like a lot of work to relocate to be near your treatment center. Where do you live? I'm guessing someplace where it gets cold. I'm doing so well this cycle that we made it up to our country cabin where I'm sitting by the fireplace, enjoying the beauty of the fallen leaves. Last time I couldn't have held my tummy together enough for the two hour drive. Up here in the low mountains it will dip into the 20's tonight, but we've got a movie to watch, dogs and a cat to cuddle and should have a quiet time to recuperate. The city just doesn't do it for calm and restful peace.

audra67

Patalameda-

My side effects seem less too, so far...I am really wanting neulasta shot since I didn't get one last time and my wbc got so low, I felt VERY ill and tired that week...so hoping our ice clears and they are open on MOnday...

no garbage trucks, mail, ups, coming through our streets yet...the snow and ice are just freezing more and more...

Glad I am feeling OK, since not sure if we could get out.

Phebe38

hi Phebe here: I only got one welcome but I also post only once. Right now I'm going to vent. Not to you people because I can identify what you are going through. My emotions go up and down. I used to have real long hair close to my bum. Then when I found out I had breast cancer I cut it to shoulder length, about a month ago I had it cut short longer on banks. Close to my second round of chemo I start to shed. I tried to keep my hair as much as I can now it just strands here and there. Every shower I get more come out. I use strainer to keep the tub from getting clogged. I'm just going to leave it and see what happens. I usually brush it all off after my shower which is a nuisance. Believe me I can identify what you're all going through. After my second round of chemo I was dizzy and nauseated the next day, My daughter who lives with me helps me out a lot with showers and personal hygiene. I have a lot of support. The port implant is another story.

Palameda

Phebe. I tried to let my hair do its own thing, until yesterday when I got my buried zombie look. Until that point I couldn't bring myself to have it clipped off. We just have to do whatever makes us the most comfortable! We have no one to answer to about that kind of choice: the few places we have control we deserve to take it!

smrlvr

Phoebe welcome. Yes we are all going through the same emotions I am like you and not shaving it but it is falling out everywhere. My friend is a stylist and she will buzz it for me but she says I have too much hair left. But it hurts! Maybe in the next few days. I want it do before my girls come home from college.

Pat I so have that dizzy foggy feeling. More than last time

lisa137

My husband just buzzed my hair tonight, and I am sitting here now in a brown scarf with little eyes all over it so I now have eyes in the back of my head....and in the side of my head....and on the top of my head. No one in this house is gonna slip anything by me.

It wasn't even falling out yet--I had a few days to go I think--but I just decided to not put myself through that---THIS Was a transition I could control--- or we, my husband and I--could control, and we controlled it. I'm glad we did.

I cried a little while he was doing it... I'm a LEO dammit, we're supposed to have MANES, and I've always had a serious mane.... and got a little more emotional because my little dog was standing there watching all this with THE most worried look on her face, just terribly concerned about what was being done to my head. She even tried to crawl up into my lap lol. Of course the other dog was just trying to eat the hair, but that was no surprise. She's special. So there was laughter along with the tears.

Now that it's all done though, I'm cool with it, I think. I only needed one towel after my shower, instead of needing one for my hair and one for my body, so that's a plus. Drying my hair wasn't a concern. The scarf is super comfortable, and I already warned my husband that I'm gonna build such a crazy colorful collection of hats and scarves and accessories....especially long flowy scarves with woven in bling and such... that I might never grow my hair out again. And my husband's comment when he was done buzzing it and I was still a bit teary-eyed was "To tell you the truth, I think it looks cool as hell."

Apparently he's always wanted to be married to a marine? lol...I dunno. But it's good. It's all good.

The only physical complaint today has been that my mouth is still a bit sore, but nothing like it was yesterday, so THAT's a huge relief: I was a little afraid it was going to stay that bad, or get worse, thru this entire ordeal, and I'm not sure I could handle that. It's a funny thing but I actually think that in my case the Biotene toothpaste and mouthwash *might* have been exacerbating the problem. They are sweetened with sorbitol and ...xylitol maybe? I'm not sure without going and looking, but I know that ONE of those sweetners I've had good reason to think I might have a sensitivity to before, so it's possible. Anyway....brushing teeth with pure baking soda now, drinking lots of SUPER COLD drinks, and rinsing occasionally with water/salt/baking soda mixture, and....with the help of some ambesol, feeling much much better.

@Phebe38 My port is still my biggest gripe. It's useful, and preferable to having them dig around for a vein everytime they need one, but it does annoy the crap out of me on a regular basis. I will not miss it when the time comes that I can get rid of it, that's for sure. I just hope it doesn't wind up taking 3 nurses and a 1 inch needle to get it hooked up and working again on Monday like it did for my first chemo. :P

So I guess what we've learned is that it's perfectly normal for us to look at other women's boobs. Good to know. I know several women who have been through breast cancer in the past--including my mom--and now I wonder if they looked at MY boobs and thought "Yep, bet she's gonna have trouble with those one day." I now bet that at least one of them did.

@Amazon that is EXACTLY why I'm not going to even buy a single wig. I would TOTALLY yank the wig off at the dinner table and plop it down next to the mashed potatoes or something without even thinking about it...OR our "special" dog would grab it off my head and run outside with it --- or try to kill it lol. I read your post to my husband and he said "Yeah, I can see you doing that," so my decision is confirmed by the person who knows me best.

I get one more "normal" day -- tomorrow--and we're going grocery shopping and...not sure what else. Then Monday is chemo and the whole thing starts again, but hey, that'll be half my A/C's down the hatch, and I'll feel like I am well on my way....and this time I know to drink drink drink drink drink, and to NOT take all my anti-nausea meds at once, and that too much fruit juice gives me heartburn and all kinds of neat little things I didn't know for the first round...... Onward!

Hugs to you all.

QuirkyGirl

ugh. iPhone just erased my message. To sum up, my treatment is at Johns Hopkins (using the biggest cancer guns I can), Lisa your post is so encouraging, Phebe - so sorry about your hair. Everyone - you are very brave to do this knowing there can be nasty SE. You have my great admiration.

Phebe38

thanks for the welcome. Pat, smrlr, Lisa

Pat: yes we have to do what needs to be done to our own hair. I don't why this effects me more than having mastectomy.

smrlr: yes I'm not shaving it. My chemo nurse told me not to shave it so my daughter cut it 1 1/2 inches everywhere. When I first start to shed I cried to my husband. He came home from work to console me. Then on my 2nd chemo my hair fell in chunks so I cried to my daughter(Sylvia) who has been helping me a lot. Yes it's harder to lose hair than having mastectomy. I'm moving on to continue to fight "c" at all cost.

Lisa: now after showering Sylvia made a make-believe tourban. Yes I'm using baking soda for rinsing but still using sensitive sensodyne just a little bit. My port was imported on my upper right arm. I had a hard time when stitches were taken out. They were internal stitches, so when cancer clinic nurses tried pulling it off. I screamed it felt like a knife went through me. So she referred me back to the doctor who put those stitches there. I ask him to freeze my arm. He said he can't do that cuz he might ruin my port or accidentally poke the vein. It had to be pulled manually. I ask my daughter to hold my other arm for support. He pulled using scissors twice, every time I screamed just like a knife went through me. The third time he was going to yank it out using both arms, my daughter ask him to stop. He cut the remaining stitch to the edge. He said "I'm sorry you have to go through this but it's not infected or swelling. You will be happy to use your port because you won't have to be poked all over your arm when taken blood or for chemo.

lisa137

I don't feel brave. I feel a lot of things, but brave definitely is not one of them.

My husband rubbed my head with some kind of lotion cuz he said my scalp appeared dry to him. Turns out, it was "shimmering body lotion."

My head is shimmering. That's a first.

Phebe38

I feel ok with my head now too. Still going to church tomorrow with my favorite toque. I have to keep being positive. I still have my taste buds. My port implant is healing nicely.

atlbraves

Hi Everyone,

I started AC on 11/29, so I thought I was. December gal but I see there are a few of you late November starters, too. I've enjoyed catching up on your posts...you're a lively group!

Yep, it's 4am and I'm not asleep because I have a headache that will not go away, despite Tylenol and Aleve, and my scalp feels as though it's shrunk a size or two and has been infested by fleas. Seriously, it's the most bizarre feeling. Sound familiar to anyone?

I'm planning to buzz my hair next Friday (the 13th...and I live on Elm Street) but this scalp weirdness is making me wonder if I need to do the buzz sooner.

Other than those two things, I've been doing pretty well since Wednesday, which is when the clouds parted and all my post-infusion crud went away.

I hope you all are having a good weekend!

QuirkyGirl

shimmering head! Love it! Sounds like something Paulette might have going on. Has anyone heard from her?

Tammibaby

Hugs to you lisa137. I had one chemo treatment and started to see my hair thinning and went straight to the clippers for a buzz. It was all coming out as I unraveled the extensions, anyway. I kind of like it -- my 18 year old son -- not so much. He did say, "whatever makes you feel comfortable, mom". That was great!!! I, too, was miserable this past Friday night and all day Saturday with the gum/mouth sores. I saw the biotene toothpaste and mouthwash and was thinking about buying it (kind of expensive). I'm glad I read your post. I also completed a few web searches for canker sores a few minutes ago and found they are prevalent in chemo patients and individuals with immune system issues. Guess what? I'm 2 for 2 with the lupus and breast cancer. I did see that a baking soda "paste" works (1/2 cup of baking soda mixed with very little water to form a paste), and I just put it on and it feels a heck of a lot better already. Whoo hoo. I see you got the memo, too. I'll keep liquids in me and I LOVE ICE.

Back to the hair: I always wear hair extensions (my original hair is very thin) and have worn human hair wigs before so I guess that's why I was not so freaked by the hair loss. I was kind of surprised that it came out so fast. I have been searching a lot of websites for wigs and have seen A LOT of adorable, reasonably priced ones. I had my stylist sew the wig to the stocking cap so that it could remain secure (since I have no hair to hold the wig combs to that are fastened underneath). After she stopped crying because she had to buzz my head (sweet thing), everything worked out pretty well. So, while you stock up on the headbands, I'll stock up on the wigs. I do want to look at headbands, headscarves, head wraps, etc. Does anyone know of any cool sites?

I love this forum. I love you ladies, WE ARE GOING TO GET THROUGH THIS. Hugs, kisses, and prayers to all. MUAH MUAH MUAH.

wallymama

Really wish I could sleep past 5am. At least I am sleeping, even if I get up before the crack of dawn.

Phebe- Sorry you've had so much pain with the port. It really will be worth it though, when you see how easy the infusion and blood draws are . Just a little poke and done.

Audra- are you guys able to get out yet? We didn't get it nearly as bad as they predicted, only about 1/4" of ice and a couple inches of snow, but it got awful cold. There is a bit of snow/sleet falling this morning.

Amazon- I can't really see myself wearing a wig either. I do plan to try to get to my resource center sometime this week to pick one out, just in case, but I doubt I'll wear it. Of course, I also think wearing it out then taking it off and plopping it on the table sounds strangely funny. Get a laugh where you can.

Lisa- Maybe I'll go ahead and shave my head too. I catch myself tugging on my hair to see if it's starting yet. My hubby is more than a little interested in me being bald. Some long lost fantasy or something. Or at least he's pretending very sincerely. Either one works. And you're right, I don't feel one bit brave. Actually, the next round scares the shit out of me. The first one was so easy, I'm worried that the next will be a bitch just to make up for it.

Altbraves- Aleve isn't really that good at headaches, try ibuprophen. And a heat pad on your head. I've got several of those Bed Buddy things and I'll heat one up and wrap it around my head kind of tight. Really helps.

Anyone having mouth issues, see if your local drug store can order you some Prevention Oncology. Made by Colgate. Or try online. It's a rinse made just for chemo mouth.

I sure hope Paulette is just having more trouble with her phone and not something more serious.

ellischestnutgirl

Quirky,

I had my mastectomy and tissue expanders placed at Johns Hopkins and had my second opinions at Hopkins, too. Maybe we could get together sometime when you are at Hopkins for care. I am also having my DIEP done there after my chemo is completed.

Tammi, the ACS helps get you wigs for free or at a discount. Most insurance also pays for wigs and mastectomy bras if you get a script from your MD. I am sorry you are having problems with mouth sores, but grateful for the information on how to treat the.

Gayle

inks

Welcome atlbraves ,Phebe and tammybaby!

Phebe - sorry about the painful stich removal. Do you still have to get the rest of the stiches out? Can they numb the area before they take the stiches out. I have no clue about ports since I don't have one, I'm the one getting poked multiple times for blood and infusions. But I am still not sold on the benefits of the port after hearing about the troubles everyone seems to have with theirs.

Quirky - good luck with your first chemo on Monday, wishing you minimal side effects!

atlbraves - I can totally relate to the weird feeling of the scalp. I was mentally ready to loose my hair but was not ready for the physical discomfort of it actually falling out. I'm using the lint roller to pull the stubble out, because if it falls out on its own it makes me feel all itchy and I'll have to keep changing my clothes.

I sure hope Paulette is just having technical difficulties, it would probably take 10 of us to try to cheer her up. Where does she get her energy from??

Mikesgirl17

Lisa137, Yesterday I only took one pill around 2:00 when I felt queasy. Today is my first morning that I don't have to take any medication unless I need it.  I feel more clear and like myself.  The steroids make me so scatter brained.  I'm anxious to see how I feel today.  I must say, the fear of chemo is such a waste of energy.  I wish that I had just gone through the motions instead of stressing about all the horrible things that could happen.  Anyone out there have any vision problems a couple days after chemo and Nuelasta shot.  I just notices that I'm having trouble focusing on the computer screen.  It's like there is an electric current going through my right eye.

lisa137

Mikesgirl: Yeah, I've been having eye problems. Part of mine is because my eyes are a little more dry than usual, but it took me days to figure that out--they just felt strained part of the time, and over-senstitive to light part of the time and just in general kind of cruddy.

I have also had a lot of visual migraine auras as well. I get those sometimes anyway, but now I'm getting them kind of often and the last longer and are really really vivid. No migraine to follow them tho so that's fine.

lorreymom

Lisa - OMG...I am laughing. Thank you so much for your story about your shimmering head. I just started losing my hair today, and so needed a good chuckle about hair loss. My scalp has been very tender the last few days...outright hurt to touch yesterday. I brushed it this morning and had a brush full of hair. Shedding like crazy. I am not prepared to shave it yet...we will see.

audra67

Wallymama- Still snowed in and ice under snow and on top of snow...but either way I am getting my neulasta shot this time! I do NOT want to feel like I'm about to die like I did the last round. I slept from 11 to 11 last night and am still weary...other than that no real side effects...it is weird...I'm eating and drinking as normal. Even had spaghetti and meatballs with red sauce....

Lisa137- My eyes are sortof blurry too...weird and my hair is almost bald in some areas, my scalp looks super white! But I do have some strands sticking it out still...I shower and some comes out, rub with towel and more, use argan oil then more, then use the roller and more still...You would think it would be bald already!

My wig looks like a wig and I think good only with a hat on it, so I am loving these scarves at home, they are soft and warm and cute...my husband likes them too..

Paulette- WHERE ARE YOU???

pompom, patalameda- how are you doing? We are on same schedule- wondering how you are feeling?

Hope everyone has a fabulous day!

lisa137

I'm going out soon with a little gray fleece cap/toboggan type thing on, and a pink and black plaid scarf "carelessly" tied over it. I have the weird urge to go earring shopping. Also (I'm a no reconstruction girl, remember,) wearing one of my old "boobs of steel" bras with its own idea of shape....with a pair of fluffy pink house socks stuffed into it. I think one of my "boobs" may be slightly dented, but at least I'm not flat today bahahah.

The things we do some days to try and feel "feminine." lol.

Palameda

oh Lisa, you're cracking me up. Socks stuffed in a bra: too much! I'm feeling woozy and shaky today. Not horrible, but a bit fragile. Oh well. My SE are a lot less than last time, so that's good.

Quirky good luck tomorrow! When you've been beset with delays, it's so exciting to feel the train is finally moving again.