November 2009-Starting Chemo

Hi, Ladies...just popping back from radiation land to check in on everyone. I hope chemo isn't giving everyone too many SEs. I feel like I am on the far bank of a huge river, and am shouting encouragement to you all while you swim across! You can make it!

Rads is definitely different.  I was thinking about it while lying on the "couch" during treatment today (couch being a nice way to say hard table...).  Chemo was scary and wierd because it was toxic and made me sick, but on the other hand you sat in a recliner and had an IV, which was familiar.  Rads so far don't give me any SEs, so I don't feel sick (yet), but you lie on a hard table in a big room while a huge machine zaps you and people talk to you over an intercom. It is scary and wierd in a whole different way. 

I am starting to get into the routine of rads -- going every day at lunch, getting situated under the machine, putting cream on my breast, keeping my markings visible. I am doing 33 treatments total, 28 regular and 5 boosts. I see the Rads onc every Monday after my tx.I am in and out in less than 20 minutes most days.

I may be delusional, but I think my hair is starting to come back a little bit.  My dr said it is ok to take biotin supplements to encourage hair growth, so I'm giving it a try. At least it feels a little more like hair and a little less like stubble -- even though someof it is still teeny-tiny. Probably every sixth hair is sticking up an inch or so, but is still that transparent chemo hair.

Every day I feel a little more of the effects of chemo fading away. I am sleeping better, at least. I am holding my breath to see if I lose any more eyelashes...I hear that happens about a month post-chemo.

I am still thinking of you all and sending good vibes...hoping you all join me on this side soon!!!

Hi Kay,

I was wondering where you had got to. Don't you have a porta cath? You look lovely, so don't even think you don't. Wait a couple of days for the SE's to arrive though.

Sue

I haven't posted for ages and have just spent an hour and more catching up. Several of you have spoken my mind, my experience. I'm in the 4th of 6 cycles and though some SE get better or worse, overall each cycle is harder and harder. I am just so very tired of it all. I want to curl up and disappear. And yet, like many of you, going to bed at night does not provide the escape and relief it once did. There is no out for now, just taking it a day or a moment at a time with as much grace as possible.

The last cycle and now this one, I caught a head cold, streaming miserable eyes, nose like a faucet on full, sore throat and scraping cough.....just when I was surfacing from the usual SE. And both colds came with a fever that pushed up to the magic number, 101F, when my onc says I have to go in for WBC testing. It's a personal triumph to get to 100.8 and go back down and not go to the hospital - been there, done that, don't want to do that again.

I am glad I never had AC ---the TCH (taxotere, carboplatin and herceptin) and Neulasta is bad enough for me. I had a lumpectomy (3 surgeries), now chemo, then 7wks of rads, herceptin will keep going for the year and then hormone therapy begins for 5 yrs. I'll be around! The port will stay in for the year due to the herceptin tx, so rads must not affect it... though I think the rads will focus on the one side and the port is on the other. My port is OK, your reports give me one more thing to be grateful for.

My hair hasn't ever totally fallen out. It is very sparse and thin, but starting to grow in length a teeny bit. My 1/4" buzz is now 3/8" but no thicker. In an odd way I am disappointed to get this close to bald but not all the way --- very wierd to feel this way. If it does fall out, I probably will wish I still had this fuzz!

Sweet dreams this week.

Becca

Hey hey, So good to hear from Pam "on the other side."  I just had my 4th Taxol TX (and 4 to go)and the only side effects so far are still the lack of energy and the missing taste buds.  I do take 2 reg. Tylenol every 6 hrs. starting day 2 to keep any pain at bay. Works for me, but I also get weekly TX, so the dose is weaker to start with.

BrendaShar:  I was told that the port removal is an office visit and involves a local injection of anesthetic, they freeze the surrounding tissue, slide out the port, and you leave the office with a band aid.  I plan to use the EMLA cream where they will stick me and I'll also sedate with as much Ativan as recommended prior to going to the procedure.  My surgeon is aware of my intense anxiety with any medical visit or procedure, especially involving needles, so she'll help me through this on March 3rd. (Just FYI: my next TX is 1/26.)

I have 3 hairs that are at least an inch long and growing on the top of my head, compared to the 1/16" stubble of the rest.  I'm going to look like Gollum in Lord of the Rings!!!

Good luck to those having TX this week.  Nette

BrendaShar:  I wanted to clarify something I mentioned in my post on the port removal...it is that once she makes a small incision, she "frees up" the tissue (guess that means she clips the stitches holding the port down), not "freeze."  I misunderstood her words during the 1st phone conversation.  We talked again today and I got the correction.

Alicia:  I was told that fatigue is cumulative with the Tax.  I'm not sure I can get any tireder (is that a word?) than I already am.  And the taste buds being dead is getting really old.  Nothing tastes good longer than 30 secs. or so.  So who wouldn't be depressed going through all that we are??!!  Keep looking toward that light at the end of the tunnel, though.  It's there.  Nette

I feel like I've "graduated"...the 4th (and final for now) chemo was last Wednesday.  This one really kicked my butt - the others had issues but this time it was like I was slammed against a wall and just could not com eout of the fog.  I've been so tired and weak.  On top of getting over chemo, I caught a cold or allergies and that, on top of recovery from chemo, just sucked out all the energy I had.  I'm slowly but surely bouncing back now.

Next week I have THREE doctor appts.!  Monday, meet with breast surgeon to prepare for lumpectomy.  Tuesday, meet with ob/gyn about possible hysterectomy but for sure ovary removal.  Wednesday, 2 week follow-up from last chemo...hoping to hear that the tumor is significantly smaller!  It was 3cmX5cm when I was first diagnosed, when I went for last chemo, it was approximately the size of a lima bean

Next for me is surgery, followed by radiation.  So nice to see a light at the end of the tunnel!

Congrats Sherri! Good luck with your upcoming surgery.

I had my last AC Monday and am doing pretty OK, I have had poopy fairy visits everyday! (That is a chemo first for me). I will do another echo and PET/CT scan at the end of the month and then start my 12 Tx of the next cocktail.

I am craving lemon, lemon bars, lemon cake, lemon pie, I could just eat a can of lemon pie filling! But I am sick of lemonade!

Are any of you experiencing hot flashes? I woke up with night sweats at 2 this morning. I normally wake up at 5, so no sleep for me! They just kept coming and coming! It's 20 degrees outside and I'm ready to run outdoors naked! Plus my hormones...or lack thereof...are driving me to the brink! Someone stole the license plate off of my car. I burst out in tears; I couldn't handle the fact that my car (my car?) had been violated. I've cried all day and feel so stupid writing this. What a hastle! I am just so emotional anymore. My mom patted me on the arm and told me she loved me. I broke down.

I know the onc said he was going to shut down my oviaries, but damn...this is the pits!

Hugs to all.

Hey Alicia - I've been really depressed and cranky, now I know why. Same as you - pre chemo pissed off mood.

We're allowed to be I reckon.

Good luck to everyone for next week's treatments - not looking forward to it as usual but it should go better since I went and complained to the head onc nurse about the novice I had last time.

Sue

Food?!  I can find absolutely nothing  I can eat or drink except water.  Everything tastes bad.  For some reason, this seems worse than when I was doing A/C and the taste buds went bad.  Maybe I'm just fed up with it all.  Anyway, called the onc. office yesterday to see if there was anything I could do.  PA gave me a prescript. for something that treats thrush (oral yeast infection) that can be caused by chemo.  Not sure I have that, but I'll try anything to be able to eat.  She said my weight is staying stable, but I don't see how with how little I'm eating.  Would love to have food cravings and be able to give in to them.  My son turned 16 on Thursday.   I tried to eat some b-day cake, but couldn't, it tasted so bad.  In the past, I could have eaten the entire cake by myself.

Re: hot flashes - I sleep in practically no clothes to start with, but keep the pj's and a sweatshirt next to me and put them on when cold.  Have many layers of covers to put on/ take off as hot flashes hit.  Still no energy.  Feel like the biggest slug but can't seem to do anything about it. If only lack of energy and the bad taste buds, guess it could be worse.

4 taxol TX's down and 4 to go.  I can do this.

Hi Girls,

  Yesterday was my follow up exam with my BS and Oncologist, as it was 1 1/2 wks since my surgery.....My BS said I dont need to come back to see her for 6 months....My Oncologist is having me come back in 2 weeks,  need to get my other drain out first....then starting the 12 wk Taxol/Herceptin.....I know some of us here are on the Taxol ,  but she said I will get 1/2 dose of T . 1/2 Herceptin,,,,,then after the 12 wks....1 yr follow up..........

  I would like to hear from any of you girls who are doing the same treatment as I am...Just because I read the side effects from Taxol , then Herceptin and I hope I can do this....I know I have to , so I will..

Connecting on this thread has helped me alot through my chemo , and will continue Im sure !! Have a good Saturday...sun is shining here in Upstate NY..YES, !

Alicia,

I share your pain - I'm really down this weekend. I found out last week that pleomorphic lobular cancer is four times more likely to come back and that has made me so depressed, not to mention the HER2 thing as well. Why did I have to get one of the rarest types of bc - NOT FAIR!!

Still I guess we have to soldier on and get through this crap and hope we are ok at the end.

Hugs to you from me.

Sue

Alicia: Thanks for the hugs I felt them. I'm lucky today, hubby went off to golf, so I can just lie around and watch the tennis and not have anyone to be bitchy to. Like you, food shop all done. Lucky there's only the 2 of us.

I'll stop researching, I was just trying to help another PILC lady on here who wasn't sure if she should have chemo. The neat thing is that she lives close to me here in Brisbane, Australia and we're going to meet up. What a wonderful thing that we can be posting on this US forum and be so close to each other in another country and have the same nasty type of bc - except mine was HER2 and hers wasn't.