2009 Herceptin group

Hey Laura....I have not started my chemo yet.  I will get my port in about 1-2 weeks and then chemo.  I will have ACT for 5 months and Herceptin for 1 year. I have tissue expanders in...and I HATE them.  I cant imagine living with these this for 6 more months.  Do the TE get any better?  I look at the long road ahead of me and I think "I just cant do this."  I am tired already.  I am glad I have found this forum!!!!!!

Donna

Hi there,  Kinda late but I`m joining in.   All finished with my chemo and surgery.  Rads now and Herceptin until December.     Herceptin is a whole new world for me since they forgot to give me my premeds last time - I had no reaction so they`re going to keep on giving it to me `straight`.   Much better than my 3 hour Benadryl nap that I was taking. 

I too got my port after my mast.  The reason they gave me was because my surg-onc didn`t do ports so I had to go to a different surgeon. 

HI donna,

I have the tissue expanders in.  I had a bilateral mastectomy 9/08 and am now finishing up chemo.  I have to wait two months after chemo to have the exchange surgery.  So my surgery is scheduled for April23rd.  I can't wait to get these hard as rock expanders out.  I can't remember how far out from surgery you are but it does get better.  I am still uncomfortable but guess you get a little use to it.  The Chemo side effects are so much worse I tend to forget about my foobs.  Ha

Good luck

Karen, sorry that you are feeling lousy.  I know what you mean about not being able to pinpoint where the side effects are coming from.....I go through this all the time.  It is very frustrating.  Please keep us posted on what your doctor says.

Prayers and hugs coming your way.

CrystlC....my exchange surgery should be right around the same time as yours.  The doctor told me to plan on 6-8 weeks after last chemo and my last chemo is mid-Feb. 

Donna....the tissue expanders are something that you just get used to.  After a short while, you hardly remember that they are there.  Compared to the chemo, they tend to take a back burner and they are a non-issue since I know that they are only temporary.  Hang in there.

Anne

Donna,

I know you are tired sweetie and you dont feel like you can do this. It is EXACTLY how I felt in April of 08 when I was dx. But I promise you that you will get through it! Some how we find our strength and get through because we have to. All of us extend hands to eachother, so on the days when ya feel like you are just not gonna make it, just come here. We will lift you up!!

Tracey

Hi Party Girls,

I'm another Laura.  I'm 46 and have been married 27 years.  I have two kids,  23 and 26.  I'm originally from Ohio but have lived in VA. since 1981.  I'm an x-ray tech working as a computer analyst for radiology at local hospital. 

I was diagnosed on my son's 25th birthday which was Nov.27, 2007.  I've been through chemo, radiation, tissue expanders, and this past Wed. got my silicone implants!!!  If the ticker holds out, I'll be getting Herceptin until Sept.2009.  My ejection fraction has fallen from 70% to 51% so I'm praying that I can continue on for the whole year. 

Thanks for getting this party started, Karen.

Love, Laura K 

hey traceyz, we share the same cancerversary!

Hi,

My pre-med orders for Herceptin were Benadryl and something else - I think it was anti-nausea.   But Benadryl knocks me out completly (my snoring makes the nurses laugh) so I'm glad they forgot it.  

 I think the only reason I got pre-meds is because the trial protocol requierd it and they kept it up when the drug switched to herceptin. 

HI Laura(estepp) Yes of course I found you ladies, you can run but cha cant hide! LOL. Im glad you are doin really good and I hope you are still on cloud 9 from your response to chemo. I know I am. Keep me posted on the rads. Remember there is no wrong choice.

Laura K. I am glad you are with us on this thread. I live in Hampton!!! BTW what is an ejection fraction? I am a member of Beyond Boobs, its a breast cancer group of premenopausal women. We get together in Willaimsburgh and Newport News. If you wanna learn more about us go to www.beyondboobsinc.org I am the "chocolate" one right in the middle of the group pic. We have alot of fun I think you would enjoy it. If you find yourself interested PM me and I will give you my contact info. I am on face book under Tracey Dickson Scott. Hope to meet cha.   

Karen, The pre meds for Herceptin are tylenol and benedryl. The only SE that I had from herceptin when I 1st started was headache and dizziness. And it went away. Of course I had a MRI and CT scan just to be safe. My hands also swelled once but I think it was the taxotere. My ankles also swelled. But that also went away. There are so many side effects from chemo, it really does a number on our bodies, thank God it also does a number on the cancer. But dont let the docs make ya think you are crazy because you are not the SEs are real. Just relax and take good care of yourself. You can ALWAYS say how you feel here. We are your sisters and trust me when I say... we UNDERSTAND! But I promise Karen, this to shall pass. BTW thanks sooo much for starting this great thread!

EJLG, Although I wish this was not the kind of anniversary date we shared, im glad we can relate.

Until next time take good care!!

Tracey

Fly, so sorry you are having these SE too! I had NO idea that Herceptin could cause so many of them. I hope after your surgery that the weekly dose with fair better for you.

Karen, good luck at your appt. today. PLEASE tell them everything. Speak up and tell them your story. After this past year we have all had, we deserve to be heard. Just tell them everything you feel now. Let us know sister!

Tracey, so far my rads doc thinks I should give rads a try... but if I choose not too, he understands. He is calling MD Anderson today ..( he and the rads doc there are friends) and going to show him my path and biopsy reports and the MRI before Chemo... see what he says.

So... my BS says no.. it will only give me a 2-3% better chance... 2 rads onco here say It might be good to do them... and I am waiting to here from MD Anderson.

I AM NOW more messed up than last week. My rads doc says in the end, it will be my choice. Grey area girl. I told him that this "choice" so many of us need to make is ridiculous. That EVERY woman who does neo-chemo should have a SNB PRIOR to chemo so that everyone knows for sure how many nodes are involved. He told me that they are very close ( at my cancer center) to making that mandatory because of ALL the women like you and I and that neo-chemo is getting very popular.

Pray for me to make the right choice. Is rads ONLY for local recurrence? Does it have anything to due with mets?

Ladies, enjoy the day... breathe..

Laura

Laura

The way i understand it is that rads will mop up any stray cancer cells,which for us in the lymph nodes could kind of be important, because we did at one time have positive nodes, and we dont know how many!!  Very frustrating, I agree!!!  My BS also said no rads.  If it'd been on my left side, i mightve had a harder decision.  However, if there is any stray cells that somehow didnt get killed by chemo, the radiation will kill them and stop them traveling.  We  both had a complete response, so chances are low, but i just didnt want to take that risk and look back and though i shouldve done it!

Angie,

YOu need to call your doc asap about the odor and pus.  I am having terrible nail problems.  The main thing I have been told is if I see pus to call immediately because that means there is an infection.  My big toenails are hurting so bad and yesterday I went to a podiatrist.  I wish I would have gone a while ago.  Anyway she drained the fluid from under my toes and had to remove the right one.  It is SOOO painful and SOOOO ugly.  I have it wrapped up and have to soak it 3 times a day.

Cristl-I am going to call the doc today.  One of them tore off a little bit ago, talk about nasty.  It didn't hurt but the smell was a lot worse and there was a lot of pus. Ugh.

Ejlj-Yes, I am part of a study, it is the Beth trail.  I was given the Avastin along with normal treatment, TCH every three weeks and now I will get it with just the Herceptin.  The only side effect I have from it is bad sinus issuses. There's been a lot of hoopla about the trail.  Avastin has deaths on this trial but, it's in Phase 3 so I figure if it was too dangerous they wouldn't continue with it.

sorry for dropping off here, started back to work then I got sick.  I am just starting to feel human again. 

About the nails ~ puss is definitely a sign of infection and an antibiotic may be needed. The podiatrist had to pull off one of my toe nails too (yes ~ really freaking gross!) but it is starting to grow out and I haven't had any other problems.

I only have 3 to 4 more herceptin treatments left, so I might be the first one finished in the group.  I wonder what it will be like not going to the treatment center so often.  It has practically been my home for the last year!

Last Friday, I had a margarita (yummy!!!) then a few beers which is the most alcohol I had in so long and of course I wake up Saturday with this awful cold.  I am supposed to go back to work tomorrow, so hopefully I can talk! 

Hi Laura,

About the rads. As you know I went to see an internationally known Rads specialist at MCV in richmond VA his name is Dr. Arthur. You can look him up (google him) and read his background. He advised me that there is a new study that has come out but has not been published yet about the survival rate and rads on women with only a few nodes involved. He explained that in my situation with the 1 node and complete response to chemo that rads would only give me a 0-1% benefit in overall survival as rads is for local recurrence. The fact that I got a bilateral makes the chances of local rec low less than 10%. And trust me my onc will be monitoring me every step of the way. So when I look at survival and it only gives me maybe a 1% benefit and I have less than 10% chance of a rec. I declined rads at the advice of Dr Arthur and I have not looked back. But there are no wrong choices! Also he said the rads docs that tell you that your gonna get a 10% benefit in survival with rads have not seen the new info because it hasnt been published yet. Keep in mind that if you go to Midas, you get a muffler so talk to your onc as well. But like I told you before he did not lump me into a big general study. He indivisualized my tumor make up and personalized his recommendation for me. It's a tough decision but I am sure your gonna do just fine either way. Best wishes!

Tracey