help pls

rhondat123 · 10-25-2006, 09:00 PM

iam 34 and have 2 kids . i was dx with mammery carcinoma in august 24 2006. it is stage 1 i had an exbopsy and then lumpectomy with snb which all came back clear. i was told a vessel was found with a few cells in it not sure of invasion there but the original path said i had infilterating tissue invasion but the lumpectomy got it all. it was also her2pos so the doc has sent me for many test and all came back clear ned. the doc says because of age and 1st path that i have to start 3mths ac every 3 wks and then 3mths weekly taxol and herceptin and finish herceptin for another6 mths weekly then rads and tamox. i have a tubal already. i am shocked at the aggresive treatment and im scared to death does this sound right? my tumor was 1.7 cm. also pls tell me what to expect and if you think ill be terribly sick or can i have somewhat of a normal life for 6 mths. i have never been sick and do my diagnosis seem to be good? doc says i have great prognosis and he thinks i may never see it again? anyone had these same treatments? just want to know what to expect i will start treatment nov1 and get port that day also!!!!!

tousled1 · 10-25-2006, 09:09 PM

Rhonda,

It sounds like your doctor is going to treat your breast cancer very aggressively, which is a good thing. The A/C will make you loose all your body hair. They should give you EMEND which prevents nauseau -- it really works. I wasn't sick at all though A/C. You are fortunate that your doctor is going to give you Herceptin since you have what is called early stage breast cancer. During your treatments your blood counts may drop but if they do they give you Neulasta for the white cells and Procrit for the red cells. I'm not going to say that it will be a walk in the park but you will get through it. Chemo affects each individual differently so it's hard to say what you may experience. Just know that HER2 is an aggressive breast cancer and must be treated aggressively. Come to this board with any questions you have or just for support. Best of luck to you.

rhondat123 · 10-25-2006, 09:17 PM

thanks for replying i am just really still in shock i cant believe this is happening i know its only preventative i should be happy for that i am i know in a way im lucky i dread this but maybe ill come out a stronger person i have always been the healthy strong one and now i feel helpless and scared ill be okay i wish it was over though and i could be telling someone else that it wasnt so bad thnx

tousled1 · 10-25-2006, 09:21 PM

Rhonda,

Having breast cancer changes your outlook on life. Just remember it's not a death sentence -- it's a battle that you must and will fight. Take it one day at a time and that way things won't seem so overwhelming. I am a one year survivoras of today and have no evidence of disease (NED).

sarah · 10-26-2006, 12:16 AM

Sounds like you have an excellent doctor. I wish the first time around, they had been more aggressive with mine. Maybe it would not have come back.
good luck
all the best
sarah

Sheila · 10-26-2006, 05:21 AM

Sarah
I feel the same way...
Kate
None of us asked for this, but now when we are faced with it we need to fight. I am glad to see your Dr is taking a strong approach, you will be able to look back after the treatment and know you have a great chance of no recurrence. Think positive, this is not a death sentence, but a bump in the road you have to go over. Try to maintain normalcy in your life, although it is hard...life does change after diagnosis, but I am grateful for the change....I dont take anything for granted anymore, and enjoy living life to the fullest each and every day.

MJo · 10-26-2006, 12:29 PM

I must agree that I'm glad your doctor is being aggressive. My tumor was smaller than yours with a negative sentinal node biopsy, but I decided to treat Her2 aggressively. We have a chance of actually being cured. I don't have children, but your two babies give you even more of a reason to smash this cancer to pieces. One thing I learned from treatment is that everyone is different -- everyone has a different response to chemo and radiation. Do you have people to help you if you get sick? I took Adriamycin & cytoxan, followed by taxol and herceptin, followed by radiation. A/C made me pretty sick. I didn't work. Taxol and herceptin were easier, and so was radiation. I was able to work part time. By "easier" I mean I wasn't sick -- bone pain was mild, not much nausea. But I sure was tired and I'm still tired. Get all the help you can -- family, church, local organizations, hired help if you can afford it. Take antidepressants if you need them. Find a cancer support group or talk to a therapist if necessary. You'll get through it, but it's no walk in the park. MJO

PS Try to let go of "always being the healthy, strong one." I rarely took aspirin before BC. Try to make your health come first for now and be good to yourself. It's easy to say all this now that the intensive part of my treatment is over. One year ago I was a basket case. But I know you will come through this.

rinaina · 10-26-2006, 12:49 PM

I think your doctor is definitely taking the right approach. Her+ breast cancer is an extremely aggressive form of breast cancer and while you have so much going for you being an early stager and negative nodes, the protocol is to hit this hard to hopefully increase your chances of no more recurrences. I just completed my chemo and radiation and am still receiving herceptin through September of next year, 2007. I had 4 treatments of a/c every 3 weeks as you will and took emend, compazine and ativan the first 3 days following treatment including day of treatment and had very little nausea, not even worth mentioning. Everyone reacts differently but I did have some other side effects to the chemo such as fevers and had to have Neulasta injections to keep my white count up. You will definitely feel fatigued and a tiredness you have never felt before so make sure you have support in place to help you out with the kids and please rest rest rest. I have had no problems with Herceptin. Radiaition wasn't bad at all just a bit of a rash across my breast area. Let me know if I can be of any help to you with questions or just to talk. Feel free to email me as well. I wish you an easy time with treatment and remember that a good positive attitude can only help so stay positive, so many beat this. I am doing the same, fighting this and beating it.

Lolly · 10-26-2006, 03:28 PM

I'm just chiming in with the others that you're very, very lucky to have an oncologist who's current with the proper protocol for treating early stage Her2+ bc. You'll get through this, and although some things will change, most of it is for the better. As the others say, you'll find you don't take anything for granted. Come here often for moral support, shoulders to cry on, and victories to celebrate which we love!

<3 Lolly

rhondat123 · 10-26-2006, 07:12 PM

thanks for the encouragement i need it i think ill be okay im pretty strong cut my hair off today and have 3 cute wigs that i love short and stylish one i blonde one is red one is brown i think ill be okay i like to change my hairstyle often my mom said its a wonder it hadnt fell out all ready i color it so much haha i didnt cry but my mom sure did and all the ladies at jcpenney cried also they gave it to me free and buzzed my hair and styled the wig free taht was so great i will buy my christmas there

Lori · 10-26-2006, 07:25 PM

I can remember how scared and shocked I was when I first started my treatments. I was diagnosed at the age of 31 (I'm 33 now) and I have two kids, also. I had the AC, taxol, herceptin, and radiation. I taught 7th grade through the whole thing. I used a lot of hand sanitizer to keep the germs away. I tried to keep life as normal as posible. I felt a little yucky at times (especially while on the AC), but I made it. I am fortunate to have a super supportive husband, without his help, I could have never made it. Like you, I was healthy and had a hard time believing that I had cancer. Everyone reacts differently, but it sounds like you have a good doc and that makes a HUGE difference. You will find this support group will be very valuable. Fight hard now so you don't have to worry about it so much later.

Lori

MJo · 10-28-2006, 11:11 AM

I remember I grew to hate the hand sanitizer and the disinfectant wipes while I was getting chemo. Hated the smell, hated that I always forgot to bring them along with me in the car. I think the hand sanitizer came to symbolize chemo for me. When chemo was over in the spring, one of the biggest reliefs was no more hand sanitizer and disinfectant wipes. Well, ladies. It's cold and flu season again. Guess what I bought yesterday -- a bottle of hand sanitizer and some disinfectant wipes!!
Lori -- you will have your treatment stories too. All the very best to you. MJO

gin-tx · 10-28-2006, 12:26 PM

Dear Rhondat,

Don't know what state you live in but I would get another opinion. My onc group says absolutely no Herceptin more often than every 3 weeks and be sure they do a Muga (heart scan) on you before beginning Herceptin. My cardiologist saw me after I called for appt for Muta, they did not schedule Muga, said to come back. My onc was not happy, had his nurse call and tell them it must be done that day as treatment was starting next day. They worked me in when gasoline was $3 per gal and I had to make 2 trips in one day to the medical center, I wasn't happy.

This sounds like a lot of treatment to me but if you're satisfied with this diagnosis, guess I would go thru with it but question the frequency of the Herceptin. I'm a lot older than you and saw 3 onc before I made a decision. I thought first was too aggressive, second wanted to do identical treatment but then a tumor was detected on my spine that changed me to Metastatic Grade IV, so that had to be dealt with first, I had 18 radiation treatments on spine and lungs which radiation oncologist promised would alleviate tumor, it is still there. It is somewhat smaller but may never be totally gone. Now having pains in spine and am seeing a spine specialist next week.

Good luck and please keep me informed, I care. I have a young daughter with 2 children of her own and would hate for any young person to go thru this.

hugs,

ginkott1@aol.com

Bev · 10-28-2006, 08:20 PM

Hi there. What's your full path? Er/Pr? Grade 1,2, or 3? I just had a bad feeling about everything I learned about my particular diagnosis. Right or wrong, I wanted to hit it with everything. Except for excessive sleepiness and cloudiness, my life has gone on and am so happy everyday for that. I love working. I love being with my friends and family. The hair thing had me down but it's almost history. Although it's not guaranteed, I'd do the chemo. Good luck. BB

gin-tx · 10-29-2006, 03:45 PM

Dear Bev,

When I read people's posts and they know all the minute details of their path report, it amazes me. I guess I wasn't that clear on all of it except I knew it was very aggressive Her2. I'll get the report and see if it makes sense to anyone else. First biopsy: Invasive mammory carcinoma. Second wider margins and lymph gland? Her 2/neu, Her 2/Cep-17. Mean Ratio 2.4. The other backward and forward v symbols I do not know how to type. It's all technical. Hope this answers your questions. I'll have to ask my onc for further details, I don't know if it was plus or minus.

Thanks for your good wishes and the same to you. I'm sure you will do fine. I too was upset about the prospect of losing my hair and if they change treatment that still might occur. I had just purchased a beautiful wig to wear, same color as my hair, when the spine tumor crept up and changed everything.

Keep in touch and let me know how you are doing. I have no idea how many treatments I'm to have, one gal I talked with said her onc said she would need Herceptin forever to keep her alive. My dr has not mentioned that.

hugs,

ginger

Bev · 10-29-2006, 09:21 PM

Hi Ginger, originally I was directing my comments to Rhonda. I'm a layman and not a propeller head as Tom would call them. I think if we're on this site for 4 years we should qualify for some degree. 3 more years to go. Sorry about the spinal tumor. That has to be hard on the mind.

Perhaps when they did your initial biopsy , it wasn't common to test for all the parameters. Maybe you just couldn't decipher it.
I think they save the tumor for 5 years so you could get it retested if need be.

I would think right now if Herceptin doesn't clear that met, you need to look at adding something that will.

Keep posting your questions. The learned ladies will reply eventually. I would say at this point it is important to get lots of input from HER2 friends. So far I'm OK. Hope that continues. Best of luck, BB

gin-tx · 11-01-2006, 05:02 PM

Dear Bev,

Thanks for your reply. The tumor on spine had nothing with the BC, it was totally separate. In fact I had had a bone scan a yr before with pain in back, trouble breathing, etc, they called it arthritis. Think someone missed a diagnosis if you ask me.

Anyway it was a fluke that they discovered it, radiation oncologist says the 18 treatments should make it disappear, has not so far. Am seeing a spine specialist on Fri before chemo. I hope they won't want to add anything else, can hardly handle what they are doing now.

Hope this finds you doing well with no problems. After I get this back issue resolved and can sleep flat without excruciating pain, I should be on the road to recovery I hope. Am to go out of town for Thanksgiving to visit family in CA, hope I'm not going to have to cancel my trip.

After I get thru on Fri will try to send you an e mail to let you know the outcome. Of course they'll probably want to do an MRI, have to get it scheduled and results in, everything seems to move like a snail when you want results. And on top of it my ins is not paying much on my chemo treatment, saying it's patient responsibility. They're paying 100% of everything else, refusing to handle the chemo, it's been a nightmare. Still trying to sort thru this and applied for some financial assistance thru Onc office.

ginkott1@aol.com