Starting Chemo July 2013

Hey JeriGrace, welcome home I'm so glad to hear you are out of the hospital.

JeriGrace,

I'm so glad you are home and doing better !! Sounds like your MO is on top of things.

I have my 2nd round on Fri, and will talk to my MO then about tingly toes, lips and teeth pain.  Hopeully he will be able to do something about it. 

Hugs 

First and foremost.  so glad you are home gerigrace and I loved your post you say things so elegantly.  

I just got home a few hours ago from my first of four every 3 weeks, chemo treatments.  All went very well and so far all is good maybe a little fuzzy kicking in not sure (maybe so).  I go tomorrow for the shot I didnt know I was getting probably to late for clariton does everyone take clariton? 

Daisy72 and Angela, Gerigrace response was so wonderfully put, ditto to her words.

Stay strong all we are in this to win.  As Gerigrace said we will be stronger from this.  We are going to help others through this.

Angela I draw blood on cancer patients it is very hard to see that everyday when you are going through this, your MO is wise.  Im off for 3 months.  I think we as women just dont take the time to care of ourselves.  Its our time.

Twohobbies I second that on the chemo chores.  My first today so next time I will add some and scratch some.

Rambo good to hear you teaching schedule will work for you. And pray your WBCs stay up

Poconos3 So glad you have a good MO now. The team of drs works so well and makes you feel alot more confortable.

JeriGrace, what is UTI? Thanks

Jerigrace, so glad your home! yayyyyy! They also told me they will be changing my chemo this Thursday due to severe dyhydration even though I drank and drank and drank some more. I had to go back 5 times in 8 days for IV's. I'm so glad I have someone thats going through this too. I hate it for all of us but just knowing I'm not alone helps so much! If anyone wants to add me on facebook just private message me. I'd love to have friends on there that's going through this also. 

I see my oncologist tomorrow, I think they are going to give me extra fluids the day before, day off and the day after chemo. One nurse told me with all the IV fluids I've been getting I should have the prettiest skin in town (too go alone with my bald head) lol

Poconos3, I am also Her2+ and checked with both my local onc and my onc from Mayo Clinic - where I had my surgery. They both told me that Herceptin is given with chemo because there have not been clinical trials to see if Herceptin is effective alone.

I went ahead with chemo, but I used cold caps and did not lose my hair. Good luck.

I will have 6 1/2 weeks of radiation after chemo, 5 days a week. That was decided even before chemo was talked about. 

Zimmy, i had pain my teeth too.  Not in one tooth specifically but they all just ached, along with my jaw.  I'm curious to know what your MO says.

Daisy, I wondered why you had to go back so many times.  How did you know you were dehydrated?  Is that a dumb question?!

Baby Ruth, I think your FISH result means this is not a new primary cancer, right?  So glad about that.  It looks like you have already been through enough already. I know what you mean - just get on with it!

Nocompromises, I was also told from the very beginning (even before surgery) that I would have rads. It was only the chemo that was in doubt.  I also had great margins and no node involvement at all.  Do you think protocols are different between US and Australia?  I always had the feeling that radiation was easy for the docs to recommend, few side effects compared to chemo, so why not use it as an insurance policy.  I'm sure it's probably based on data but just my feeling.

I'm getting more info a little at a time about my neutropenia episode.  My son manages clinical trials for pharmaceutical companies and has some knowledge about taxotere.  I have had problems for a long time with elevated liver enzyme levels and he says there could possibly be a relationship that put me in a higher risk category for neutropenia.  As for the urinary infection, I was one of the lucky (?) ones that didn't get constipated but had diarrhea instead.  Sorry if this is TMI but it is definitely harder to manage that and keep bacteria-free if you know what I mean.  OK now you know we all know way too much about each other!! 

Mellie239:  I am new to this forum. Wish I had joined one when I went through my chemo.  Anyone on this forum can feel free to email me or ask me any questions.  I took extensive notes - as to what side effects occured when and how I felt, etc.  I was diagnosed with breast cancer in March of 2012.  I had a lump in my right breast and had a mastectomy.  I went through chemo for 6 months - and my last treatment was October 13, 2012.

You mentioned that you have decided not to have a port.  I did get one and I was very glad I did.  It did not hurt to have it inserted and it made it so much easier to have my tubes inserted each time I had a treatment.  I only had to put some numbing lotion on it each time about a half hour before treatment to numb the area.  I do recommend that you get one.  It has left a scar but its not very big.

Also, the chemo treatments were very uneventful.  I went to MDAnderson at St Lukes in the Woodlands and they were wonderful.  I had a treatment every week for 3 months, then every month for 3 months.  It went by pretty quickly.  I went in and they put me in a room with a recliner, a tv and hooked me up to IVs.  It takes about an hour, although wait time and labs, I was actually there about 2 hours.  I never felt anything going through my body.  It was hard to believe that it feels like nothing's happening, when, in fact, a strong chemical is killing cancer cells.  I was given meds through my IV for nausea so I never experienced vomiting throughout.  I DID, however, have an allergic reaction to my Tamoxifen (I believe it was) in the beginning and I broke out with sores and a rash all over but my oncologist reduced the dose and it went away.  After each treatment, it did knock me out for about 3 days but I continued to work.  Every now and then, I had to take off a day or two.

My hair did fall out exactly 2 weeks after my first treatment.  I was out of town doing a trade show when that night my hair started coming out in long strands, not clumps.  It was traumatic but I came prepared.  I brought a scissors and a wig - thank God.  My sister began cutting off all my hair.  I never did shave it.  I had gone to MDAnderson and tried on wigs as soon as I found out so I'd be prepared.  They graciously GAVE me two wigs of my choice.  Good wigs are very expensive so you might check into what resources are available to you.  I had shoulder length hair and my wig was very short.  I got so many compliments on it when I got back to work, I decided when I was through with all this, I wanted to keep that style.  (However, I am now discovering that when your hair grows back, it won't necessarily be the same texture or color as you were used to.)  My hair just started coming back in May, I think.  I'm still wearing my wigs cuz I hate the way my hair is growing back but in 100 degree heat, they're very hot.  Sometimes I wear a hat.

The biggest and worst side effect I experienced was the dry mouth (and dry everything) which changed the taste of all foods.  NOTHING tasted the same so I lost my appetite.  The only food that was consistently good and appealing was fruit and I ate lots of that.  No one had ever warned me of this side effect.  It lasted until my last treatment.  When I first began to eat again, and it tasted like I remembered, it was amazing.  But I did lose 15 pounds.  I bought a cookbook that I believe is called "Cooking While on Chemo" - it has lots of great receipes and tips.  It will also tell you what to expect.  One day you might crave hot foods, that night you might crave cold foods and the next day could be entirely different.  You might want salty foods one day and sweet the next.  BUT, not only does it not taste good, you might develop canker sores in your mouth, under your tongue.  I had them the entire time so every time I tried to chew, my teeth would hit the sores and it hurt like hell so it was easier just not to eat.  Sometimes I was starving but it was just too painful to eat.  My doctor did give me something called "Magic Mouthwash" (true name) and it did coat my mouth and made something taste tolerable for the moment but it didn't last. 

The other worst side effect was that I lost all energy.  I have always been an energizer bunny but wow!  It zaps the life out of you.  I slept a lot!  In fact, now, 9 months later I still don't have all my energy back but its getting there.

I'll stop here for now but, please, if anyone wants any advice or wants to know the specifics of my cancer and treatment, I would be very glad to share.

I forgot to mention a couple of other side effects - I had neuropathy in both hands and feet.  My nails actually hurt but i didn't lose any of my nails on my fingers.  However, I did lose some of the nails on my toes.  Surprisingly, they have grown back.  But I still have numbness in my fingers and some of my toes.  I was recently diagnosed with Carpal Tunnel and I know that affects the fingers as well as the hands and wrists but my doctor thinks some of the stiffness, swelling and numbness in my fingers might be residual from the chemo. She just started me on Gabapentin (a nerve pain killer) so hopefully that will start working.

Also, my skin was extremely dry and it also dried out my eyes so it was hard to wear contacts.  Use plenty of lotion and eye drops.

Hi

I just read ur post, I have couple of questions. Can I PM you?

Jerigrace, I didn't realize the first couple times what was happening, I just felt like I was dying pretty much. Felt terrible, nauseated, and very weak. My daughter who's 18 actually called my doctor the first time to let them know I felt bad and they said bring her immediately for IV fluids she dehydrated. After I got those fluids I felt like a new person, I could actually eat! So from then on when I start to notice I'm not urinating as much and I'm feeling terrible I just call my Nurse Navigator, with in minutes she has a order from my doctor and calls me right back and says come now, they are waiting on you! My doctor said we'll give you fluids everyday if that's what it takes to get you through treatment. They say I'm drinking enough, I'm doing nothing wrong, it's just the chemo, steroids and nausea meds combined. Hopefully, this next one will not be as hard...oh and thank God for my port...that would have been a lot of sticks! 

We now keep me a chemo bags in every car, just in case we have to go again in a hurry. Blanket, socks, snacks, tablet, puzzle book and hard candy. IV fluids take an hour and half or more every time I go, but well worth it!

Hi Lynn,

I am doing PT for range of motion and avoiding lymphadema. It helps. Sooner than later. Had cording already developing from lymph fluid left in channels from the nodes removed. Grooming my horse with my right hand has been the most pleasurable exercises and the result in 2 weeks was "substantial improvement!" So groom your dog. Reach for that dish or pantry item. It will get better. :-) Watch for feeling of fullness. Overdid it grooming 2 horses and one very shaggy dog and boy did I pay for it. Will be getting a compression sleeve and compression glove/gauntlet to wear on flights and for any more strenuous exercises. Be sure to ask if you aren't offered them.  Good luck tomorrow dear Lynn. 

Been busy and have missed a bit!  JeriGrace, I'm SO glad your episode is behind you - forward ho!

I experienced headaches too, but nothing a couple (or 3) tylenol couldn't handle - I was also told this was sinus pressure from the Cytoxan.

Congrats to you head shavers ;-)  and, IMO, wigs are overrated!  Wore mine Monday and got SO hot!!! I prefer hats and scarves myself. 

I'm in for round 2 this morning, began Claritin again yesterday and will continue MUCH longer this time in hopes of avoiding the pain I had last round.  

Sheila - I went yesterday for a lymphedema PT as well!!! Great therapist, and I had cording down my side. I've been doing daily stretches already, and I have gained another 10% range of motion since last weeks' consult. I just want to be back to 100% physically!  I'm going to be fitted for a sleeve sometime in the near future - said better now than later, especially if I need rads (not sure yet).  My best to YOU today TOO

Hugs to all,

Lynn

Hi Everyone,Sue when u called us firecrackers I loved it because thats exactly what i am,must be the redhead temper in me. I'm also on dose dense AC then will get get the T also dd.Everytime i ask my onco about the taxol he says lets wait until ur through the AC. I never read se of any of my chemo because i dont want to pyschosomatically(is that a word?) get any ,but the Taxol sounds just as bad as the red devil. My counts came back yesterday lower than the first tx,do they continue to drop more after every tx? Im not neutropenic but close.I also developed a huge darkened area around my port after this last tx,the nurses said yest its from the adriamycin,anyone else get this? As far as rads i getting 61/2 weeks after chemo,with a lumpectomy its a given,also i had a 9mm metastasis to my sentinel node,not that rads r no big deal but alot of cancer pts ive spoke too that have relasped and their common denominator,no rads,i would get 2 or 100 opinions on not doing it,noncomp.,really. About going to the mall,if ur counts r ok do what makes u happy Seebha,i asked my onco about going to the movies and he said just go at less busy times(like matinee).Hang in there all my bald buddies,good luck to all getting their chemo this week,soo happy ur home Jerigrace.Angela