Starting Chemo April 2009

Anyone have any issues with swelling near the port following a treatment? I'm noticing that near the shoulder and port area, it's very tender, achy and kind of annoyed feeling.  I don't want to call the onc on the weekend (don't want to end up in the ER again on a sunday), but don't know if it's normal or not?

Otherwise, besides the groggyness-fog and some mild heartburn, starting neck tenderness, that seems to be it for the SEs.  Maybe it won't be so bad once I get through tomorrow. 

My hair is starting to fall out--17 days after my first treatment.  My plan is to shave my head later today.  I am not too excited about this but I also don't want chunks of hair falling out either.  I know this is something I have to get through.  I can do this.  At least I am feeling better and I could eat today.  Talk to you later. 

Hi - another April chemo beginner here. I have stage IIa  estrogen +, HER2. Am getting TCH x 6 and then 11 more just herceptin and then radiation. And then tamoxifen. Whew.

Did the first TCH 10 days ago.  I wish I had found this forum before then. But it really went fine. The port was great to have (especially since it hurt so much after the surgery - but now I am glad I have it!), and everything went smoothly. No fatigue to speak of. A bit of heartburn/constipation/diarrhea that was a challenge but NO NAUSEA. Didn't even take the anti-nausea meds at all, and usually I am the WORLD'S BIGGEST PUKER for any reason. Weird, huh?

My concern is - a few days after the treatment, I began to break out on my face. This is not usual for me AT ALL. Was mostly on my forehead, but has gotten worse and worse every day since (this is day 11) so that now I am COVERED with bumps and pimples all around my hairline, around my ears, my jawline and chin, some on my cheeks, behind my ears, neck, some on chest,  They really hurt. I called the onco nurse on Wed and mentioned when it wasn't quite so bad - she said it might be from the Herceptin and there was nothing you can do. Since then it has gotten worse each day and is painful and upsetting, even besides how hideous it makes me look. I am 51 and look like a pimply teen aged boy (no offense to the teenaged boys in the world - I feel sorry for them!). Has ANYBODY had anything like this happen, or heard of it? I have not read anything about it anywhere.

Help please!

And to all those who haven't started yet - TRY not to worry too much about the first time. I was convinced I would be projectile vomiting non stop and never even was queasy one time! I never stayed in bed, only napped one or two days at my mom's insistence.  Walked my regular 2 mile loop every single day and am going to ask the doc if I can start running/training hard again. I hope he says yes!

Thank everyone in advance who can help me with the skin thing.

Amy

I had my first round of FEC on Thursday, and thanks to all the helpful tips here, have survived most S/E.  I've had flushing with Decradon, minor nausea, minor heartburn, limited food tolerance, etc.  I'm mostly sleeping, but when I am awake, I have horrendous headaches.  I've had migraines that didn't feel this bad.   

Has anyone else had an issue with bad headaches?  

Geri,

Sorry about the hair. You can make it till tuesday. (just don't touch it till then.)

Luckofthedraw, I had really bad headaches also. I am on TC I would check with your onco. They may be able to change one of the meds for you.  

Hi Ladies

Haven't logged on for a while and just caught up on how everyone has been feeling. I had my second AC last Tuesday and finally had to shave my head yesterday. I wasn't prepared for how bad my head hurt and had a lot of trouble sleeping last night. Still having residual headaches today. Losing the hair is harder than I thought it would be that is for sure. I am struggling everytime I look in the mirror. Mostly because I know it will be like this for another 16 weeks before the hair can even start growing back in. Really I have had some tiredness that past few days but for me the second treatment was easier than the first. I have slept more but at least my stomach hasn't felt like the last one. Half way through the hardest part is what I just keep trying to tell myself. Is anyone else having as much trouble from the Neulasta shot? That seems to be the worst for me with the bone pain. I have been able to continue working through the chemo but the day after the shot I am pretty much chair ridden due to the bone pain.

Thanks for the support  - I am not combing my hair until Tuesday - just kind of "patting" it gently to hold on to it until I can get buzzed..

Stephanie, glad to hear your second treatment was easier.  Hope I can say that after Thursday.  I had bone pain after the Neulasta, but not for a full week after the shot, and then it only lasted for less than a day, and was not horrible - everyone seems to have such individual responses.

Geri

I thought I'd check in today. I had my husband shave my head. I had my second A/C treatment on Weds and the hair started falling out slowly that evening. By today, it was in big clumps and I was just tired of the hair everywhere. It was so hot here today that the shave was a nice idea.

 I have almost 7 year old twin daughters who are having  a tough time with the hair loss. They will be okay, but it's quite an adjustment for them.  I don't have a wig, but will dig out some hats for school drop off tomorrow, for sure!

 Other than the hair, I'm hopeful to start feeling a little more energetic tomorrow. I have been very tired this go around and would really like to have a bit more of my usual energy before I get hit from the Neulasta shot. I know for everyone it is different, but for me I really felt it on day 8! Funny how it's different for everyone, isn't it?

Pam

Tammy - the onc nurse told me that there is a range on the dosages of chemo they give and depending on some of the the se's that you are having the onc may adjust the dosage within those ranges.  They are watching the numbness and tingling in my toes from the taxol and this is one of the things she said he might adjust the dosage for.  From what i have heard se's like fatigue are cumulative.  Each week you have less reserves to draw upon.  Other se's might not be the same.  Hope this was some help. Sending hugs and wishes for a se free week to everyone.  Annette

I decided to be completely pro-active about my hair. So I made an appt with my regular stylist. She was overcome with the fact that she just found out I had BC & when I told her my plan she totally misunderstood! I told her I wanted a short spikey do. Then in 2 wks when my hair starts falling out, I'll come back in & she'll shave it.

Well, she made me short all right. It has no style at all & is mostly shaved with spikes on top! It looks awful! Now I have to wear a wig or hat to my first chemo treatment!

I have been following all of your comments, and getting lots of advice, but finally decided to join in.  I had my first T/C on the 9th of April, and here I am on the 17th day, also picking clumps of hair off of my shoulders.  I am hoping to hang onto it through tomorrow, when I will have my daughter come over and shave it off.  I wish I would've thought to keep a journal of my SE's after my first treatment.  I have my second treatment on Thursday, and am trying to remember what I should have on hand.  I had terrible headaches, I couldn't keep anything down for two days, had constipation, and then diarrhea.  I also had bone pain for a week after the Neulasta shot. I found that a heating pad, and Capsacin cream helped. I have also scheduled an appt. for Acupuncture for the day following the chemo.  Has anyone out there tried it?  Funny how all of our side effects seem to vary, but the losing of the hair time-line seems to be pretty much the same for us all!

Linda

Hi Ladies,

I'm having a tough time today, feel like crap. I was hoping that the 2nd dose of TAC wouldn't be as bad as the first. Bone pain and muscle cramps kept me up for most of the night. My husband got up for work and found me sitting downstairs on the couch crying like a big baby. Guess I was feeling sorry for myself. I've tried very hard to have a positive attitude from day one. And today it's in the toilet. Mama Mia is my positive therapy movie, I've seen it five times already. Sorry just needed to bitch a little. Thanks for listening.

Good morning, ladies.  Feeling much better today, day 5 of round #2.  I do want to report that I tried a daytime allergy tablet for 3 days, similar to Claritan, for the Neulasta SEs, and I did not have ANY bone pain or shortness of breath this time.  I did have regular chemo SEs - tender neck and throat, heartburn, constipation that finally relaxed, but I did feel better with the dropped dosages from round #1.  Fingers are a little numb, but not too bad.  I still don't want to do any more treatments, but that's just how I feel about it all - especially once I start feeling better.  I start to question how much is this really going to lower my Oncotype score - it was 18% and they were hoping for 10%.  I just wonder if it is worth all of the side effects and what we are putting our bodies through for an 8% decrease.  I seem to have very weird side effects - they are always just out of what they say are "normal."

I did call my onc's office this morning and am waiting to hear back from the nurse at the onc's office about the tenderness and slight pain / swelling around the port - hope it's nothing too bad - I realize there could be clotting issues or hopefully it's just some sort of allergic reaction.  If they need to see me, I'll have to drive myself in, which I don't really want to do - still a little in the fog, and everyone has gone off to work today.  I've taken 2 days off to recuperate.  I'll keep everyone posted to what's happening.  

I need to have my DH shave my head again - still losing lots of little dark hairs and want to bring it closer to bald, to help keep so many little hairs from raining down.  Stubborn grays won't even pull out - but the rest, oh, they are coming out.  We'll have to buzz it shorter,  as close as I can get it.  Nadine - yes, I noticed a slightly tender scalp this weekend too, I just couldn't get my head comfortable.  Must be more of the little darlings shooting out of our heads.  Alaina, I have the same reaction - I go to scratch my head and my nails come back full of hair.  Ick!!  Its so out of control, to have it just falling out all over the place at random.

Hugs to everyone - hope we all have a good day!

Well, back from the onc's office - and they had to fight to get blood out of my port.  Now its even more sore than ever, but doesn't immediately appear that there is something clogging it, which is good.  I need to put ice on it and hopefully it will feel better.

But, after discussing with my husband on the way home from the doctor, where I was understandibly frustrated, emotional and scared (they were talking of having to go for x-rays, and other tests, other 'things" that would be needed if there was a clot), I'm planning to talk to my doctor on Thursday during my blood draw about stopping treatment.  I am having side effects that are way out of the spectrum, and I just don't think I can handle any more.  My husband and daughter support me, since this is a preventative thing, and I am getting radiation and Arimidex following anyway, and my surgery was clear margins / no lymph nodes.  I know I am strong, but there are just too many things that I cannot handle two more times, and I give big hugs and kudos to everyone who can stick with it.  i will keep you posted as to our discussion and what happens with this port business.  forgive me if my typing is not the best, I cannot feel any of the fingers on my left hand, so it's hard to type right now. 

talk to you all soon.

woke up with a pillow covered in hair, wasn't expecting that for a few more days. i guess i am going to have my bf buzz it this afternoon. 

yesterday i ate my first full meal since chemo and i hope to do the same today. i go back in for round two on wednesday and i am already scared.