Brand New To This

nmoss1000

Hello my fellow Her2+++ fighters,

This is my first post after reading numerous threads for the past month.  I suppose posting made it to real. After being diagnosed a month ago, I underwent Bi Lat Mast, 3 weeks ago. Cancer was only on the left side but I opted to remove both. I mean who wants to do it twice? 

I met with my Onc last week and he prescribed 6 rounds of TCH and weekly doses of herceptin for 12 months. I do not know but it seems like allot. Has anyone with similar diagnosis (ER+70/PR +50 HER 2 +6.0  2.5 CM Tumor Stage 2 Grade 3) have ever not done chemo or just did herceptin? Also i was hoping if anyone had my treatment and can share their side effects?

 After reading the boards, I am terrified of the chemo, I know I am not alone but I am interested in finding out any recent feedback or stories. Thank you and I wish this board did not exist..

lago

I just finished 6 rounds of TCH 5+ week ago and now just doing herceptin. 1st 3 rounds were pretty easy. Then the SE lasted a little longer each time but not horrible… at least for me. Everyone is different. You will not get every side effect. This site was great support too.

I too did the BMX with the tumor on the left side. They did find a very small amount of precancer (LCIS) one the right so I'm glad I got rid of that one too.

Everyone is terrified of chemo. I really expected it to be a lot worse. For me it wasn't quite as bad as I though although I did have some rare SE that effected my nails. Had I iced them during treament I probably could have prevent that.

Here are the threads you should check out:

taxotere,carboplatin and herceptin
http://community.breastcancer.org/forum/69/topic/578284?page=1 

TRIPLE POSITIVE GROUP
http://community.breastcancer.org/forum/80/topic/764183?page=1 

There are more but this is a good place to start.

KristyAnn

I had a similar treatment in 2008- left mastectomy, 6 rounds of TCH with herceptin weekly until last chemo- then herceptin was every 3 weeks until the 1 year mark. I also had 33 rounds of radiation after that. My onc was very proactive in prescribing stuff to counteract the side effects and I took them- anti-nausea, steroids. I was really groggy for a couple days afterwards, didnt drive for about 3 days due to that but I never threw up and I worked all the way through chemo- usually 3-4 days a week depending on whether it was a chemo week or a herceptin week.

Find a group on here going through the same time as you- we have a May 08 chemo group and we are all still friends and communicate on here and through Faceobok. A lot of us have even travelled and been able to meet each other- it really helps!!!!!

PM me  if you have any questions or just need a shoulder to lean on during the process!

Jaimieh

I think we all wish that the need for this board would go away.    I do not know of any person who got just herceptin with you stats (it doesn't mean they don't exist).  I also did TCH and YES i was scared out of my mind but after the first one I was shocked that it was easier than I thought it would be.  It did suck but you just take it one day at a time and eventually it ends.  ((hugs))

dragonfly1

Sorry you've had to join us here but you have definitely found a great place for support! I just started TCHx6 with Herceptin for a year on 2/15/11. It's not always easy but it is definitely your best chance of beating a very aggressive breast cancer and reducing your recurrence. I'm in my first cycle which many people say can be the worst and although I'm having side effects, I'm managing. You will get through it too! We've all been at the point of being terrified by chemo but once you begin treatment the time will go by and you'll put it behind you. I've actually been able to work during chemo so hopefully that will encourage you:)

Please join us on the "Triple Positive" and "Taxotere, Carboplatin and Herceptin" boards as well-there is a lot of support there and you can ask any questions you may have...wishing you all the best! 

kathleen1966

Hello,

I finished my chemo about seven weeks ago.  Though everyone is different, the side effects were not too bad for me.  I would get chemo, feel fine that day and the next and then on the third to about the fifth day I would be very tired and depressed. I was told however I felt when I was pregnant is how I would likely handle chemo.  This proved to be true (other than the glowing energized feeling I also had). I did not feel nauseous nor did I throw-up once. I believe this could be because of the drugs given to prevent this during chemo.  Everything I ate for the first week and a half tasted like dirty water.  I would lose 10 pounds the first week and gain it back by week three (and ended up gaining 10 total by the end). The worst part for me was losing my hair. It didn't physically hurt but made me feel like I wanted to isolate myself.  And it became more obvious to everyone that I was being treated for something than before, when they may not have known. I am now in my fourth week of radiation.  It is a long journey and I am tired but doing fairly well.  I believe this aggressive cancer requires the most aggressive treatment the first (and hopefully only) time around. And it hasn't been that bad to be honest.  Perhaps if you think of it as only one year out of many, many years that you will live because of it, you will feel better about it, or at least able to tolerate it. I think studies show that herceptin works best when given with chemo. I was treated with TCH for six treatments, I will get Herceptin for a year and I am currently receiving radiation for 6.5 weeks.  I wish you well!  

nmoss1000

Thank you! All of your experiences and kind words have helped put my mind at ease a bit. I do think loosing my hair will be the most traumatic and I am concerned about the side effects of the steroids. Weight Gain , acne, menopause etc. I know it sounds superficial and I am sorry but these are very important things I think make me a woman. I get my port installed next week and have my first chemo the following week. I wish all of you well and I am happy to have support here.

dragonfly1

nmoss1000: None of it sounds superficial at all...many of us struggle with exactly the same things and the hair loss is a very big deal. I'm on day 12 of cycle 1 of TCH and will be losing my hair this week and I hate it! We all learn to accept it as part of this necessary treatment but it's so hard and traumatic at the same time. The acne has not been bad and the weight gain has been a really big concern of mine as well but it's something that can be worked on. You will be SO glad to have the port-it makes this treatment much easier. Hang in there-you have a LOT of women here to help as you go through this. Make sure you follow the taxotere, carboplatin, herceptin thread when you start chemo because there is a wealth of info/tips about managing side effects...Best wishes!

lago

nmoss1000 I wasn't too stressed about losing my hair either. Mores stressed about losing my eyebrows but I never did and I'm almost 6 weeks out from my last chemo. My hair is growning back.

Weight gain: First 2 tx didn't gain a pound. Gained 3 after tx4 I really started to retain fluid so by the end I put on 16 but then they gave me a diuretic. After I lost the fluid I only gained 8 lbs and that's because I stopped working out. I'll lose that again. Just don't be stupid and start eating high calorie, high sugar unhealthy food and you will be fine.

Cheompause: This is different for everyone. I had my last period 2 weeks before chemo. Still MIA and since I just turned 50 I don't expect it to come back. I get some night flashes but I don't get drenched. I sleep through most of them. I do notice I get them more when I eat spicy food… and I like spicy food. I did get the chemo-vagina (dryness and sore during intercourse).

I am now using Replens and it appears to be getting better. Still have my sex life. Just remember if you don't use it you lose it. If you feel up to fooling around during chemo I highly recommend you do it. Keep that blood flowing down there and you will have less problems. Also I have never had a vaginal birth (no kids). Women who haven't experienced vaginal births do have a tendency to get vaginal atrophy more than those who have… so if you did a vaginal birth it helps.

But at age 41 you might even get your period back.

Acne: I had terrible acne in my 20's and 30's. Was on Accutane 3 times. I did not break out once on chemo. If the break out doesn't go away or keeps happening the oncs have meds for that too. I was also diagnosed with Rosacea 1 month before chemo. I just use a topical on my nose. Never had a break out on chemo.

Steroids: Again different for everyone. I had no SE. Actually loved being on them because in my case they reduced my fluid retention. Yes it did blow out my face a little… which actually made me look better. Yes I looked better on chemo than I do now. My face is now back to it's long skinny self. Did I mention my avatar is 2 weeks after my 4th chemo? Most people are not on steroids the entire time. I was on it the night before and day of chemo… that's it.

It's different for everyone but just remember you will not get every SE. Most of the people posting are the ones with issues looking for support and advice. Those who didn't have problems are not likely to post about it.

nmoss1000

Thank you, your avatar looks great. The dread that lies ahead, lessens each time I read these posts. It seems all of you have bravely weathered the storm and came out on the otherside ok. I worry how this will change me when it's over and how to move on from it. But I guess just like anything else, you just do. I only hope it all sounds much worse than what it actually is. Not a walk in the park but not white knuckle either?



I am lucky to have a fantastic supportive husband who could look and me and tell me I am beautiful when I could not. I have wonderful family & friends who are supportive. I actually feel guilty being a whiner when there are so many of us alone and without treatment options.



Sorry for the rant, it's easier to ge out when someone, anyone is listening.

saralmom

nmoss - I actually didn't have steroids before or after treatment - I had one bag as part of pre-meds with chemo, but no pills.  I had ACTH though, so maybe there is a difference with TCH?  I will say that after chemo I would sometimes have mood swings and be edgy, but nothing major. And with all the meds now available, chemo is doable.  I felt some nausea, but never vomited.  I just felt kind of "off" and toward the end I had MAJOR fatigue.   

I was really worried about weight gain too - and it turns out that I did gain about 6-7 pounds - but that is probably because I have been eating whatever I want and not feeling like watching my diet - bad idea.  At one point my onc told me that I should NOT be dieting during treatment, so I have not been careful since.  I'm about to start Weight Watchers this week though.  Started about 10 pounds over my good weight, and with the additional 6, I need to do something.  

I am 44 (43 at diagnosis) and I went into chemopause after my 3rd treatment.  I had minor hot flashes after that, and never anything extreme.  I recently had a complete hysterectomy, and my hot flashes are a little worse now.

I didn't have a trouble with skin issues.  But I was never an acne person anyhow - no problems with it during my teens, etc.

I always say that if I can do it, anyone can do it.  And feel free to rant here anytime!!

pejkug3

I'm on TCH and I don't have steroids before or after treatment either.  Just the day of in the IV.

nmoss1000

Hi ladies,



I looked on the boards and I can t find how long the steroids SE last? My regime is 8 mg a day for 3 days every 3 weeks.

kathleen1966

I had the steroids the day before, the day of and the day after each chemo.  I only had the side effects when I was taking them.  Towards the end, I cut them down to only the day before.  I had read somewhere that they can reduce the effect of the chemo.  I don't know where I read this (some where on the internet, so maybe not even true) and I don't want to scare anyone but I also wanted to take as little drugs as possible.  They made the hot flashes of instant menopause worse and I couldn't fall asleep with ease at night.  They are to take care of an allergic reaction? But as taking them was brief, the side effects were brief.  

kathleen1966

And had the TCH treatment.

nmoss1000

Thank you Kathleen. The steroids are really bothering me, I do not like being wired period and the other host of nastiness. I am still trying to figure out if they make you feel that bad, what side effects are worse that they are prescribed from are worse ?

Jaimieh

The steroids where the cause of a lot of my issues going thru chemo.  My body likes steroids and goes crazy when I stopped so I had to wean myself off of them.  Chemo #6 I forgot to take a lot of the steroids and I was fine (not that I am recommending that) and felt better 1000x quicker.  BTW, I lost 30lbs while going thru chemo.  Although it is a shame that I gained 40lbs back .

nmoss1000

Thanks ladies, I am wondering my my Onc won't give me Benedryl and is insisting on the steroids. I am thinking between the Emmend and Bendryl that should cover the SE the steroid was prescribed for?

nurseronda10

I finished TCH on Feb. 21st and will continue on Herceptin every 3 weeks until end of October.  My first chemo was the worst, had a multitude of symptoms such as broke out in a rash on face and chest, got thrush, bone pain, sharp pains in my head, burning in esophagus, nausea, diarrhea with rectal burning, felt like I was pooping fire.  I really dreaded the second chemo, but the only symptoms I had with the rest of treatments were stomach related.  Did vomit a few times and had a lot of reflux, but drinking Maalox around the clock for 3-4 days after chemo helped tremendously.  I did not take pill form steroids but did get steroids intravenously prior to chemo.  Would also take Tylenol 650 mg and Benadryl 50 mg prior to chemo.  I did not sleep well the night of chemo which I attributed to the steroids.  My main problem now is generalized swelling but did start on Lasix last week which has helped some.  My wig leaves a big dent in my head and I have indentions from my socks.  I feel water logged and weight is up approximately 10 pounds.  My biggest problem during chemo and still have is low hemaglobin (7.7) and neutrophils (200).  I have been getting weekly Procrit for several weeks.  I have basically been homebound since November just trying to avoid catching something.  Chemo is very doable and actually went by fast for me.  I am dealing with lymphedema now which sucks big time.  I hate it and to know that I will have it the rest of my life is depressing.  

nmoss1000

Hi Nurse Rhonda



Your first round sounds like my worst nightmare. My onc is not giving me Benedryl but I will take it on my own. May I ask how many cycles did you completed (yeah!! You made it) also how many days did it take for your SE to subside? Where you on Neuladta as well? I heard that stuff can be harsh. I am sorry about the lymphadema, that was my biggest concern and had I not gotten a dissection I sure I would have it. I have been swollen since bi lat a month ago.



Please try to keep your head up and do not let cancer take anymore minutes , hours or days that it already has. Thank you for your honesty and despite all the suffering you endured, it's over for you now and you know that you helped someone along the way.

nurseronda10

 nmoss 1000:  My oncologist has me bring my own Tylenol and Benadryl and I take it right after she gets my lab results and I will continue to take it prior to Herceptin.  She said it cuts back on any allergic reactions.  I did have a reaction to the Taxotere the first time I got it, and chemo nurse gave me extra Benadryl in my IV and also extra Decadron IV, so my head was feeling really weird by the time I left.....kind of sleepy from the all the Benadryl but wired from the steroids.  With first chemo, side effects and rash showed up on day 3 and were gone by day 5 except for the thrush and diarrhea.  I was on antibiotics with most of my treatments due to low neutrophils, so I think they caused a lot of the diarrhea.  My neutrophils would always be up by next treatment, so I never had to have Neulasta.  Second and third chemos were not bad at all.  Fourth one I had a lot of nausea and had to go the ER because I kept feeling like I was going to pass out on day 4.  Labs weren't too bad so oncologist said with next two treatments the weakness and lightheadedness would get worse and to stay in bed if I felt that way.  She said it was a side effect of the chemo.  The 5th and 6th chemos, I actually had vomiting on day 3 and 4 and very, very weak, so I was in bed an entire week.  I took Zofran, Phenergan, and Maalox but didn't seem to help any with the  nausea and vomiting.  I had 6 cycles 3 weeks apart of Taxotere, Carboplatin, and Herceptin.  I go back to work next Tuesday 12 hour shifts.  I know I'm not ready physically but I have already been off 6 months and I have no choice.  I work with a bunch of great people so hopefully it won't be too bad.  Some people are able to work throughout their treatments.  Not everyone gets neutropenic and anemic like I did.  I am 53 so I think the older you are the harder the chemo is.  You look young, so you will probably breeze right through it.  Sending prayers your way!!!