Triple Positivers/Chemo regimens and experiences

lago

Chicago, IL it's posted on the right under my name ;D

Omaz

Lago - Ahh, I added location to my name, thanks.

lago

I get my port on Monday (10/04/2010)I start chemo on Monday or Tuesday. Having bone density test tomorrow.

Wish me luck. Ironically I have doctor/physical therapy appointments all next week. Hopefully I will feel good enough to go to them. I'm planning on it. Just expect to be a zombie from all the drugs that cause drowsiness.

Omaz

Lago - Do you start chemo the same day as you get your port?  Also, what chemo are you getting?  I am curious because your diagnosis is similar to mine.

lago

I was going to start the same day as my port but they just changed my start date to Tueday this morning. My guess is there wasn't a room available or just in case there were complications with the port they thought it best to wait a day.

I'm actually glad its not the same day. I want to be drinking a ton of water not only the day of but before chemo. You can't drink/eat anything prior to port surgery.

------------------------------------------------

6 rounds of Taxotere/Corboplatin with Herceptin (12 months total) every 3 weeks followed by 5 years of Anastrozole (Don't know about rads yet)

Omaz

Lago -If your surgeon didn't mention it, mine told me to mark where my bra straps touched so he could avoid that area.

lago

Bra? Ha I don't wear those anymore. I don't have boobs only these foob expanders. I've been wearing camisoles and muscle tee shirts. Actually just collected all my bras to donate. I won't be wearing any under-wires anymore, ever.

Also there isn't a lot of choice of where to put this. He said I'm so small and thin he doesn't have much real estate to deal with. He definitely trying to keep it to the side. Hopefully using a kiddie port… yes he decided I needed a juvenile port, will help it not stick out too much.  Of course I don't have any fat to hide it either. To bad they couldn't put this in my butt or thighs. Lots of fat/real estate there to hide it ;-)

Omaz

Lago - Oh dear, I haven't gotten used to all this yet!  I have a 'power port' on my left side sortof close to the center, just outside my v-neck permanent tan area (living in Arizona many many years!).  It is very low profile and where he placed it there is not much fat but it still isn't really obvious.  I did have to sleep propped up for the first few days after placement, I don't know if you will or not. Sounds like your surgeon is a considerate guy.

lago

All I can say is we're going to have it for a year so we better get used to it. I'm thinking I want to keep it in till my plastic surgery is done too if that works out. No IV with a port. My hand/arm blew up from the IV. I still have a bump and soreness on my hand and it's 4 months out!

Ondagrow

Hi All,

I will have my 4th chemotherapy on Tuesday...

4 down 2 to go...

lago

Tuesday will be my first. Hows it going so far sohardbnme?

redninrah

can you guys believe it i still have not had my port put in.....ive had one chemo already. next ones on 12th oct. Stupid hospital system.

elaineg

I am triple positive as well and will be getting cytoxan taxotere and the herceptin.  I have not seen others with the cytoxan as the C it looks like mainly carboplatin?  I wonder why I am different?  I have my port so ready to go starting the 20th of October for 6 rounds...

lago

Carboplatin and Cytoxam look like they do the same thing with the same side effects. Carboplatin is the only Platinum-based chemotherapy used for breast cancer occording to this site, what ever that means.

Cytoxam is used to treat early stage after surgery, before surgery to shrink large tumors or after surgery to treat advanced stage BC.

 Carboplatin is used to treat advanced-stage breast cancer.

 From what I have read Carboplatin is what they used in the trials with herceptin that seemed to work. But I don't remember if those trials were for advanced or early BC.

Ondagrow

 Hi Lago...It has been so so...My side effects are annoying but doable...

I will have my 5th round of TCH on Tuesday... Last one Nov 16..

I wish it was almost over after that...I am dreading Herceptin for another year...Mastectomy, Dec 13...uuuggghhh...

Ondagrow

Has anyone started Herceptin yet... or Tamoxifen... Please share SE's you have experienced...

I wish I could be done after my last chemo...There is more uuuggghhh... By my next birthday (in September) I will be renewed...

NanaA

I did herceptin for a year and finished in March..  Herceptin was not a problem at all compared to chemo.  I tried Fermara, Aromasin and tamoxifin.  Femara gave me joint pains so bad I could not type or sew and since I work as a bookkeeper at a computer all day that did not work.  And I had reactions to the other two so for right now I am not taking anything.  I was not willing to have headaches all day every day just to take one  of these meds.  I am allergic to the binders in some meds and these  apparently contained some of these.  I have had to have a hysterectomy since I finished the herceptin.  The lining of my uterus had thickened and developed polyps.  I decided just to have it all out instead of doing repeat D & C's since they can grow back.   First question the OB-gyn asked is if  had I been on tamoxifin.  Apparently this can be a common side effect. The surgery was 2 weeks ago and I am getting better each day but still tire out easily.  I have a friend who has been taking tamoxifin for 2 years so far with no problem at all.  Please don't worry about the herceptin that is very easy to get thru.  You will just have to try the tamoxifin.  Maybe you will do very well on it.  Just make sure your OB-gyn keeps track of how you are doing.  Best wishes  Annette

redninrah

i will be doing some form of hormone therapy, for a 36yr old ,is it usually tamoxifen?

Ondagrow

"I wanted a perfect ending. Now I have learned, the hard way, that some poems do not rhyme, and some stories do not have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what is going to happen next. Delicious ambiguity." ~ Gilda Radner

lago

Speaking of Gilda, if there is a Gilda's club in your area you should check out the free programs. I've heard great things about the one here in Chicago. I might go to some of their programs: http://www.gildasclub.org/

Ondagrow

Lago...I live around the corner from Gildas club...

My last TCH is November 16...

Has anyone ELSE dO herceptin alone...Is the side effects like TCH...I NEED TO HEAR ABOUT  MORE EXPERIENCES...

Ondagrow

Thanks Nana...

lago

Nana I will be doing Herceptin alone once my chemo ends too. From what I hear most people do not have SE with Herceptin. Granted right now I do get nose bleeds from it. There are some people who do. I would expect that you would have those SE now and I doubt new ones well develop.

Some SE listed here: http://www.breastcancer.org/treatment/druglist/herceptin.jsp

 
There is this thread too but I find most of the women can't distinguish between Herceptin and Chemo SE: http://community.breastcancer.org/forum/80/topic/728442

Ondagrow

Hi Lago

I do not get nose bleeds now, so I hope that still stands once I start Herceptin alone...

redninrah

my nose is excessively dry !

sheila888

sohardbnme...I did Herceptin alone after Taxol Treatment was done.

I absolutely got no SE from it. Herceptin is a maintenance drug not chemo.

And your hair starts growing during the treatment.

Good Luck to all who are or will be doing Herceptin.

♥

AnnieFletch

I finished chemo Feb 08 (TC), & was on Herceptin until Oct 08.  The doc's plan was for me to have radiation, but I chose to have a bi-lateral mastectomy with no reconstruction.  Since I'm post-menopausal, I'm on Femara for 5 yrs.   The only side effects I've developed from Femara is hair thinning & osteoporosis.   Other than a little fatigue (probably from chemo), I seem to have no other side effects.  All my labs (every 3 months) are coming back normal!

Omaz

Annie - Did you get your port removed after the herceptin was complete?

Cathicam

I'm tripple possitive as well, have a few more treatments of Herceptin (done in February) but I'm unable to take the Tamoxifen due to blood clot issues. I'm currently on anti hormone therapy so that I can get started on the 5 year treatment plan. I have worked all through my treatment, have had an MX and radiation already.

Everything was going ok, the hardets part is the emotional hormone rages and other issues that gow with menopause. I wish you luck its not easy but its doable.

lago

OK when do the emotional hormone rages, major hot flashes etc. start. I'm about to have my 3 tx and haven't had a period now in 8.5 weeks. I do believe I have had a some minor night sweats (just kicked of the comforter for a few minutes) but that's it. Maybe some more tender skin down below but that's it.

It would be nice to at least warn my DH. ;-)