Starting Chemo July 2013

Hi Ladies! I haven't posted for a while. My second chemo treatment was on 8/8. I was doing good until last weekend. Long story short I am wore out still. Can't get up for very long cause my legs give out tired. I have a question if anyone could possibly answer or know. My 3rd treatment is next week the 29th. If my counts are low will I have my treatment? I want to get them over with and am praying this tiredness goes away for at least a few days before my next treatment. I only have two left before I am done with chemo.

I am reading the posts when I can keep my eyes open long enough and have so much respect for you ladies. Hang in there!! Hugzz to all.

Hi everyone- had that last nasty red devil yesterday and everything went smoothly. Counts are on the low side, but no transfusion and no reduction in the dosage. guess I should be thankful that we were able to do dose dense AC full force all 4 rounds! Feel ok so far, just the brain fog and up at 3am. I asked questions about Taxol. She said there's less nausea, usually a little less constipation, and gradually the fatigue improves. That part sounds good. Have to wait to see what happens with allergic reaction and bone pain. She says statistics are low and if there is pain it usually subsides in a couple of days. She agreed it can't hurt to bring bags of ice for my fingers and toes to help prevent neuropathy.



Realitycheck - I think it depends on HOW low the counts get. I forgot to pick up a copy of my blood work and don't remember my numbers from yesterday. (Chemo brain 😟) The dr has often said that one thing or another is low, but still in a safe range. So we've been able to keep on schedule. It doesnt necessarily mean that you'll have a delay. Good luck, try to rest and eat well, have lots of protein, give your body every advantage you can.



Thanks to everyone for your understanding and encouragement on my last post. As I was leaving for treatment yesterday morning I threw in a pack of thank you notes to work on while I was waiting. I think writing all those cards helped me change my perspective to being thankful for all the little things people have been doing. Then a friend showed up to sit with me for a couple of hours and got me laughing. Love her. As far as the kids go, yeah they were pretty selfish on my birthday, but they've done a lot to try to support me and I don't want one bad day to overshadow that. You'll love this... My DH was having a hard time picking out a birthday present for me this year. I happened to mention earlier in the week that we needed to replace our grill brush. Yep, you guessed it. He wrapped up a grill brush for my birthday. I didn't even know what to say. To his credit he did have some other gifts too (including chocolate) but he must have been really desperate to give me a grill brush!



Angela - thanks for the info on amblyopia. When my son was 5 we discovered the vision in his left eye was 20/200. He's 11 now and in April it had improved to 20/40! We were so happy with the progress. It was all through various schedules of patching and eye drops and has been very difficult. The dr never talked about the glasses you described. During the summer we let up on the treatment (a few other things going on in our lives, ya know!) and he regressed to 20/60. So know we've wasted the summer and I feel mommy guilt for not pushing him more. I am definitely going to talk to the new dr about what other methods we can try that will not effect him so much at school. Our dr has said that our window of opportunity is closing because of his age and that's why we need to be more aggressive. Hoping the new dr has a more manageable plan.



Soryla - I never responded to your question about underarm odor. Boy has mine changed. I tried changing deodorant, but it hasn't helped. Ive started washing my pits a couple of times during the day and reapply deodorant. Helps some, and I keep wipes in the car in case I need them. Ugh. Hope this goes away. Hormonal changes maybe or simply nasty toxins escaping. Glad I dont have the "chemo gas" with this or my family wouldn't be able to live with me!



Im starting to think I'm being thrown head first into menopause. Hadn't really started that before chemo, but i know chemo can bring it on. Im waking up alot at night hot (not sweaty yet, just hot) plus all the emotional turmoil I've been in this week I'm wondering if this is the beginning.



Sorry for such a long post. Thinking of you all and hoping you're managing the SE's well. Love the support you all give to me and each other. Keep it up!

Hi Ladies,

Lark - Thank you. I just don't want to have to wait on a treatment. I'd just as soon get it over with and deal with the SE at home. I am resting and I do need to eat more protein. Nothing and I mean nothing tastes good. My taste buds are shot it seems. More eggs and peanut butter coming up! LOL

Welcome to the group HVV! I have no clue what the black patches are. I was looking at my SE list for taxotere and cytoxan as those are the two chemo drugs I am on. What chemo drugs are you on? Maybe ask your Onc at next treatment? If you find out please let us know in case anyone gets black spots.

Hugzz to all and hope your feeling good soon!!

Hi All,sorry TwoHobbies it took so long to get back to u,yesterday was a really bad day,headache,nausia,just awful but i'm alittle better today. I'm shocked they had someone with c-diff anywhere near anyone else. It's highly contagious to people with a healthy immune system never mind us. When a patient had c-diff in the hospital they were isolated to their own room and bathroom with a big sign on the door to put on a disposible gown and gloves. When doing homevisits I would also completely cover my clothes with disposible gown,booties covering my shoes,and double glove(and never would use the same bathroom). And this is when i was healthy.You did the right thing scrubbing,etc,but you never should have been exposed in the first place. Ladies,c-diff,and MERSA are highly contagious and very hard to treat,even for "healthy"people,no one with these bacteria should be anywhere near us. Hopefully you'll be fine TwoHobbies,you did the best thing u could with the circumstances. But i would say something to your onco immediately. Hugs All Angela

Angelanature, what is c-diff? I am glad u feel better today. I hate nausea and no appetite SE. Headache is another one for me.



Rambo, yes my red rash start with one line from my vein where they poked me with my first chemo infusion then continue with 2 lines parallel in the middle and then form into one line all the way to the middle of my arm. At that time my rash was so ichysn i had some small yellow bubbles on top my skin...ewww. My onc didn't seem to worry, he told me use hydrocortisone or benedryl creme. Ask your onco to see what he has to say :-)



Lark- I hope your last AC goes easy on you. I put bags of ice on my fingers n toes whenever I'm on taxotere. Don't kno if that work or not cus I'm only on #2. I still have 4 more to go.



To all , hope you flel better soon!

So my onc said: Dont worry that happens and it goes away on its own.  My research uncovered that this is due to my mouth not having the usual abiltiy to beat down bacteria. yuck. V

Happy Friday all! I believe a few had treatments today - hope all went well! I got my new boob today! I'm no longer bald & a uniboob - just bald now! We'll see how that goes. Ahh... The little things! I actually went to work bald this week - I don't mind it. I decided whatever is most comfortable for me! My hubby isn't too thrilled though, but is trying to stay supportive - he wanted to go to the bookstore last night & as we were leaving he said "aren't you going to put on a scarf or hat or something?" (He didn't know I had been rocking the bald at work!) has anyone lost their eyebrows yet? When should we expect that? Also can't remember if I asked this already or not (chemo brain!) - did anyone see the article possibly linking blood pressure meds to breast cancer??? I've been on high BP meds for years and mine was on their list! Grrr!

Hi everyone!  I haven't posted in awhile, but I read your post and pray for y'all daily.  I had my 3rd infusion on the 16th and it's hit me harder than the first two.  I think it's partly my nurse messing up my meds and pms.  I finally feel normal today.  Yay!  One more red devil to go on Friday.  Then onto 4 tx of taxol.

I have a question for those who have had a mastectomy.  Specifically the drains.  I don't know why but it's really freaking me out.  The bs said I'll have them for about 2 wks.  I asked how do they get them  out and he said they just pull them out.  No sedation no numbing...nothing.  Just a yank.  Yikes.  He said not worry, it doesn't hurt.  I find that hard to believe.  And who drains them if they get full...yuck.  He did say having the mastectomy isn't that painful either.  Usually just an overnight stay in the hospital, 2 days at most, if there were issues.  Most women are feeling back to normal within the week.  Is this true?  He said the reconstruction is a lot harder.  I thought I was going to skip the recon, but now I'm on the fence.  I'll see a plastic surgeon next month and mull over everything.

I asked my MO how come I have no hair on my head, but I still have to shave my legs!??  Doesn't seem fair.  :-)  I still have my eyebrows so I'm grateful for that.

Thanks in advance for any info.

2bluestars,

I have not had masectomy yet.

I have read about the drains.

You might consider taking a pain med if you are that nervous about having the drains pulled.

I know I had one removed before I left the hospital from partial masectomy but I didn't feel a thing...perhaps because I had pain meds in me!

Some people have to pull their own drains...or have someone pull them. (I think that is rare)



You or someone else will have to empty those drains, they will give you a chart to fill out. Once the drains (drainage) are "low" for a day or so (maybe 3? Not sure) then they can come out.



There are a few reconstructions I was told about from my PS...implants or Tram flap.

I learned on this board there is also DIEP flap. Check out the boards to find out more.



Pat

Thanks LanaM, that helps a lot. 

I had no problem when they removed the drain tubes either.  My breast was still numb from the mastecomy. My BS said the nerves get cut and they regenerate again, but you don't really feel much.  I had to measure the drains each time...I had 4 drains, 2 on each side.  They were mostly just a pain in the butt.  Getting in the way of things..couldn't sleep the way I was use to.  I felt like a cow with udders that need milking all the time.  I had expanders put in during my mastcomey surgery but one became infected and they couldn't get it to clear up..so it had to come out.  I will say that I was a little stunned by how my incisions looked..my sister helped changed my bandages once and by the look on her face I never asked her to do it again.  She tried to be brave but I could tell it shocked her.  I actually wrapped myself after that...I worked up quite the method for doing it.  My reconstruction was delayed due to other health issues and now I'm stage iv and back on chemo so it will have to wait still.  So one expander in and nothing in the other.  With my baldness and one boob I look weird but most people do to.   

2bkuestars

I had my uniMx first 6/19 and then chemo

I had 2 drains initially, one was removed in Hosp after 2 days as it was only draining 30ml a day. The other was more like 80-90ml. The bottles are vacuumed gently so the fluid just sucks out along with a bit of gunk ! I lost suction on one ( too active) but I had a spare - make sure you get one and they gave me a bag to hide the drain in and I just tied that to my jean waist - when in shower I hooked the bag over the tap so I had a spare hand - just keep your wound covered and waterproof as best you can

My 2nd drain came out day 10

You will be FINE I never felt a thing with either !!!! Sounds weird but its true

I was told after Mx not to drive with drains in ( but I did about a week after Mx). I also had full ALND and played 18holes of golf three weeks post Mx - might have been different if I had had a Dbl Mx. Don't know

The Mx isn't too bad and once out of theatre they only ever gave me Tylenol in Hosp

Good luck when it happens - I am fast thinking there is a lot of negative stuff on forums and not enough positive posting to balance the books ))))



Day 3 post round 3 TC and no ill effects yet. Woo hoo.

5:30 in the morning and I've been up since 4. Had my 3rd TC chemo on Tuesday and my Neulasta shot Thursday afternoon. Neulasta kicked my butt last time, so we tweaked some things hoping it wouldn't be so bad. I got the pain controlled, but then the pain meds nauseated me, so I had to take anti-nausea meds PLUS I'm taking anti-bx for this severe folliculitis break out over my entire scalp, so I don't think my stomach is too happy with me 

Lana-Why does your husband want you to wear a headcover? I was wearing one because I thought my bald head made others uncomfortable when I realized that I didn't do anything to feel uncomfortable about! This happened to US. We didn't do anything to be ashamed or embarrassed of. I've been rocking my bald head too, and I really like it:) Do you ever have those moments when you go to brush your hair out of your face, then remember that you have no hair? I've done that twice.

2bluestars-Don't freak out about the drains. When I took a shower, I took a shoelace and made a necklace out of the drains so that I wouldn't have to worry about accidentally yanking them. I continued to wear the drains on another shoelace around my waist. It just seemed easier. Emptying your drains will become just another task that you've had to get used to in this club that none of us signed up for. They'll show you how to empty them. It's really easy and just remember to wash your hands afterward. I had 2 surgeries. After my mastectomy, I had one drain and when my BS pulled it out, I felt nothing. After my lymph node dissection, I had two drains. When she pulled those out at the same time, it was NOT delightful, but the pain subsided within seconds. Removing the drains takes seconds, so try to remember that it'll be over soon. It'll be over soon. And take a deep breath. Also, I believe they give you a thoracic nerve block when you have a mastectomy, which is why I never had any pain from that surgery. 

Curious, do any of you wear a face mask when you're at work or in public during your nadir days? I'm going to see Michael McDonald in concert next Friday and I'll be at my nadir, so I'll probably wear a mask. As if my bald head and uniboob don't already scream my situation, I'll add a nice yellow face mask to the mix:) I'm tired and nauseated. Gonna try to sleep. Thanks for being here ladies, and good luck this weekend everyone

Nocompromise...I thought of you yesterday.

I eyeballed my daughters "stretchy" book cover and thought it would make a wonderful "buff". So I put it on and it worked! The part where the book jacket would go went on over my head and the rest hung flat down the back of my head, so I bunched it to a pony tail...it had "devils ears" sticking up soi just tucked them down . Wish I could upload photos! It looked really good, I even went out with it on. Hubby had no clue what is was when I asked him what he thought it could be.

My daughter, on the other hand, immediately recognized her book cover. She better watch out or more book covers might disappear! Lol

Hope you get over blah quickly.



KTLe. There is a girl with a blog in our area, she showed herself wearing a face ask and she had either painted or used markers to put lips on it...her friend was wearing one too. I've seen it where people write "cancer sucks" on the mask...



Pat

Angela, I had a muga scan and ECG as a baseline prior to chemo. I've already had ACT so I'm at higher risk. I've asked for a new MUGA scan which my doctor is ordering, but I think I'm more concerned than she is.



2bluestars, the most painful thing about the drains is the stitch they use to keep it from sliding out. I would encourage you to research your reconstruction options. Many PS will only offer you the procedures the are comfortable with. If immediate recon is an option, it can have better cosmetic results than delayed. (Each surgery can create scar tissue.). I chose DIEP because I did not want implants that would need to be replaced or feel foreign. It's a longer recovery but I want to put this behind me someday. Also first time around I wanted minimal surgery, and had a lumpectomy. I wasn't ready to consider anything like DIEP then, and made the best decision with the info I had. There is a lot of information to consume and it can be overwhelming, but the right path for you will become clear.



I'm 4 days past my third infusion and feeling rough. Bad headaches again that don't respond to anything. Food tastes nasty. I'll say I'm halfway done when the SE subside.