Poll for Triple Positives

blondie45

I posted this a few days ago but I think I put it in the wrong forum as I only had 1 response.

 Anyhow, can someone tell me is being triple positive a good thing, a bad thing? Am I guaranteed to have to have herceptin and/or chemo? Can you have herceptin alone if you have no lymph nodes involved?

 Can any of you triple positives share with me if you have herceptin, herceptin and chemo, or neither? Also if you had chemo what was your combination (i.e. taxotere, cytoxen, etc.).

REKoz

I'll start! Chances are unfortunately not in your favor as far as avoiding chemo. I am early stage as well and am basically on TCH( taxotere, carboplatin herceptin)  x 4 (my protocol is a little different- but for all intents and purposes). I was told chemo is a given regardless of stage for HER2 pos. It is an aggressive cancer whether in lymphs or not (mine was not-  happy dance  Herceptin is usually given with chemo initially and then every 3 weeks for a year. I believe the general protocol everywhere is that they do not give Herceptin only for early stage initial diagnosis bc.

Hope that helps. I'm almost done with the chemo part and I JUST cannot wait!

Ellen

mmm5

Actually triple positvie is becoming a more favored dx per several Oncs I have spoken with. Yes aggressive cancer but actually most treatable, and in early stages Herceptin has astounding return rates! I did TCH x 6, then finish a year of Heceptin next month.

lexislove

I did ACx4 and then Tx4 with Herceptin. After the Taxol finished I had my Herceptin every 3 weeks till Nov 2008. 52 weeks total, and 17 infusions.

Wow...that's alot...lol

blondie45

When you guys say TCH x 4, TCH x 6, AC x 4 or Tx4 can you explain the number please. Do the numbers mean that many treatments over a period of time or does the number mean those treatments for 4 or 6 months, etc, every so many weeks?

lexislove

those numbers mean how many treatments. Some woman get it every 2 weeks and some every 3 weeks

Ex. ACX4....AC 4 times.My regime was every 3 weeks.

blondie45

lexislove

so you had ac every 3 weeks x 4 and then t every 3 week x 4 for a total of 8 sessions of chemo. Do you think they determine how long per how big  (like yours was 6 cm+) or your stage? This is probably a silly question but everyone loses their hair correct? How sick (like nausea and vomitting) did you get? p.s. thanks for answering my other post on this in the IDC forum.

lexislove

Thats right!

I think they took into consideration the size of the tumor, tumor grade(3), Her 2+ and my age.

The results that came our of the original Her2 findings in 2005, were done with AC and Taxol, to show a reduction of recurrence by ~50%. Since then , they have also seen the same results with the TC combo. The AC comes with a slight increase of risk of heart failure, but the docs monitor you. I was young,with no heart disease in my family and healthy(besides BC) so my onc was ok with doing the AC. My heart is fine. I finished chemo over a year ago. A woman who maybe a bit older, might do the TC.

And yes...evryone looses their hair. Sickness, it all depends.Some woman can work through their chemos, others have it a little rougher. But you are not sick all the time. Just for 2-4 days after your chemo.Then you feel ok. Fatigue was the big issue for me. I didn't throw up once.

blondie45

Another question, am i actually considered triple positive if I am ER+/PR+ and HER2 neu + or is there a way to have a triple positive of only the HER2neu part?

REKoz

Triple positive+ ER, PR and HER2 positive

juniper

I am triple positive.

I had two large tumors and 18/18 nodes tested positive.  I had twelve weekly treatments of Abraxane/Herceptin.  Then 4 treatments of CEF over 12 weeks.  Then, I went back on Herceptin, which I get every three weeks which will continue for life.

navygirl

I was triple positive and only supposed to do TCx4 with Herceptin, then my oncoDx score came back significantly high at 50 so they altered my treatment to A/C x 4 dose dense (every two weeks) with Taxol and Herceptin for 12 weeks, and now I am on Herceptin every week until September. I tried every 3 weeks but I am allergic and could not tollerate the higher dose they give every 3 weeks. Triple positive is not thought to be as bad with the discovery of Herceptin. We have hormonals for the ER/PR and Herceptin for the HER2 so there is something for all of it.

Jenniferz

Here's a different spin for you. I have a former co-worker that was diagnosed with IDC and triple positive, Stage II nearly 8 years ago.  She had a lumpectomy, chemo, and rads, but at that time, Herceptin was only given to Stage IV. She is doing well. Three years ago, I was diagnosed with IDC, tumors < than 1 cm., mastectomy only. I am also triple positive.  AT THAT TIME, Herceptin was only given to stages III and IV, or that is what I was told by my pcp, a surgeon, a nurse practioner, and two oncs., I didn't recieve rads or chemo because all believed that I had treated this cancer aggresively enough.  I am now three years out, so far so good, and on Femara only.  I think if I had been younger, they would have looked at me differently, as it  was only a year after my dx that the tables turned for all Her2 patients, and all now receive Herceptin.

Will you receive Herceptin?  Probably, as this seems to be the way the triple positive tide has turned.

Here's wishing you well,

Jennifer

yellowfarmhouse

HI. dx 2/05 : had mastectomy ( bilateral) 4/9 nodes positive.  Had AC x 4 and then Herceptin went off trial just a few days before  I started Taxol so had Herceptin x 4 with taxol ( every 2 weeks) and then every three weeks for a year. Had 25 rads.  Then took vaccine in Seattle at U of Washington.  NED-- 4.25 year survivor.  Had ooph and have taken Arimidex almost 4 years already.  I'm 44 years old now.

Wishing you the best. Take care.  Wendy

chiquita

Yeloowfarmhouse...can you please let me know what was the SEs with Arimidex?

I have to take it for 5 years and I like to know if the SEs are bad. Thank you...

flash

chiquita- the SE's are different for different people.  It depends on many things.  For example, many people get aches and pains in their joints because of the lack of estrogen. Someone of an age that doesn't have any arhtritis in their joints would not get the aches and pains. Every person is really an individual and has a unique response.

The best thing to do is to try it and see what YOUR se's are.  If it doesn't work well for you, you can try some of the other AI's.  Everyone has to do what is best for them. I've done Arimidex and now Aromasin; other friends have gone from Aromasin onto Arimidex.  It's all different.

I hope it all works well for you.

Mitch56036

Hi Blondie,

AC and TC are different chemo treatments by 4 times.  I had AC once every 3 weeks four times, then radiation for 6 weeks(daily), and then herceptin every 3 weeks for 18 doses.  I'm also on Arimidex and suffered aching and stiff joints and bones - these did seem to ease after about 12 - 18 months and I'm still on Arimidex (about 18 months to go) Am still NED (no evidence of disease) to date which is fantastic.

If Her2+ I would think you would have Herceptin - as it is an aggressive form of breast cancer.

Diag 2/05 Stage 3 Grade IIB 1/4 ER/PR+ Her2+

blondie45

Mitch

Did you have a mastectomy or bilateral mastectomy? After the call from the surgeon yesterday that pretty much my entire right breast is involved (I am sort of small) and per the MRI they are thinking the lymph nodes are also involved I have opted for bilateral mastectomy next Wednesday. They are putting the port in right away for chemo also.

Mitch56036

Hi Blondie

I just had a mastectomy - though sometimes wonder whether it would have been easier to have a bilateral.   I also didn't have an option as tumour quite large and deep.

Also, I think on one hand, as Her2 is aggressive, it is not good but on the other hand we are also lucky because we have treatment options available especially if ER/PR+ as well.   I was 49 when diagnosed and went into menopause after my first chemo treatment so I received Arimidex.

At first I found myself a bit intimidated by the surgeon and oncologist - then I decided it was my life and I needed to find out as much as I could about what they were doing and why - I tried to ask the hard questions (even though sometimes I wondered whether I really wanted to know).  I am separated and living in a another country from where my family is, so sometimes it was tough going - thank God for my sister who was and still is a wonderful support and flew in to help)  I'm definitely a stronger person and have learnt so much (about myself and others) from having had breast cancer.

Take care - I'm sure all will go well next week and if I can help with anything at all just get in contact. 

Always try and look at the positives in life

Carolina59

I am triple positive, Stage 1, and received TCH x 6 (every three weeks) and then Herceptin every 3 weeks for the rest of the year--finished in Aug 08. I had a bilateral mastectomy and oopherectomy and am on Arimidex for 5 years.

My understanding is that Herceptin works synergistically with chemo for a better outcome. I had cancer in both breasts, so I chose the most aggressive tx recommended by my doctors.

Good luck to you on Wednesday!  Come back and let us know how you're doing.

NanaA

I am a triple positive early stage no nodes.  If I had not been her2+ they would have just had me do radiation.  But because of the her2+ they would not consider not doing some kinds of chemo so that they could do herceptin too.  Apparently it must start along with chemo but then can continue the rest of a year without it.  They are doing 12 weekly of taxol (this week will be #6)  and I have had herceptin twice (every 3rd week).  Since I am post menopause I will be doing femara for 5 yrs.  The onc told me recurrance went from 25 % to less than 5 by doing chemo, rads, herceptin and the femara.  Triple positive is not the best just ER+PR+ would have been better, but triple positive is much better than a triple negative.  They really get hit hard with chemo because they don't have other choices like herceptin and tamoxifin or femara.  The side effects are doable and am looking forward to being halfway done this week..  Can see light at end of tunnel kind of.  Still have rads to go.  You can get thru this.  I have still been working 20 hrs a week so far.  Hopefully can make it all the way thru and continue to work.  They have been very good about letting me choose what hours I feel well enough to be there

simojt_jeffrey

Hi blndie ..

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mmm5

Hi Wendy

Have been reading your inspirational posts and wanted to ask you about your vaccine trial, how did you get in and what did you learn about the prevention of reocurrance with this vaccine?

Now that you are a almost 5 year survivor of Her2 do you feel mostly out of the woods as most studies show a real drop off of recurrance for HER@ after 3 years. (after completion of Hercpetin)

ALso being one of the few triple positives out there I wondered HOW positive for Est/Prog you were? I am on the low side and really considering going off the AI's I am only 18% positive for ER and one Onc says the Herceptin trumped all for my treatment, still seeking other opinions.

How do you feel after 4 years of Arimidex? Anything help you stay feeling good?

THanks Michelle

jap

Hi everyone,

I have been told that triple positive is the best diagnosis.  I wonder what they use for criteria.  What have others heard?

Jo Anne

LouLou40

Hi everyone,

I was dx in Feb aged 40 with IDC 2 x 2cm, 2/10 Lymph nodes.  I recently finished Chemo AC x4 every 3 weeks, followed by weekly Taxol x12. Herceptin started with the Taxol every 3 weeks ongoing for 12 months. Currently doing 6 weeks of Radiotherapy as I had a WLE not mastectomy. Arimadex to follow.

Not sure about the best diagnosis, but lot's of treatment options - feel like I hit the jack pot in BC treatment!

Gizzie

Hi Everyone!

I was dx Jan. 7, 2009 with metastatic invasive lobular cancer- right breast-lymph node involvement.  Tumor was 5 cm+ so started with ac every two weeks for four treatments, then taxol x 12.  My neice asked me for some info so I was reading the original path report and decided to speak to the onc about the results. 

If I hadn't asked about my her2 status they wouldn't have noticed that I was on the margin line and they re-tested and found me to be her2+ so they then started me on Herceptin. 

 We must watch out for our own heatlh.  This was a pretty huge slip. 

 So I am triple positive.  I decided on a bilateral masectomy and that was a very hard decision.  Turns out that I did have cancer in the left breast at the time of the surgery so that was a good decision.  I only found this out last week when I was reading the path report issued after the surgery.  I was so out of it at the time that I don't even know if I read this report but my other niece recently asked me for some info and I was re-reading thru everything.  So two different nieces have asked me questions that have led to some startling findings for me.  As I know that the cancer doesn't jump or travel from one breast to the other I am really freaked.  I tried to talk to my sister, a nurse yesterday, and she kind of shut me down.  She obviously couldn't deal with this. 

Having the first diagnosis was a bomb shell.  Finding out about the other breast three months after my bilateral and having finished 6 weeks of radiation and realizing that I had this cancer at the time of surgery after five months of chemo and herceptin was troubling for me to say the least.  This is on top of having the herceptin weekly for three months.  Help!  The chemo and herceptin did shrink the orignal tumor from 5 cm to 1.5 cm which was huge!!!!!!  But why did it allow cancer to grow in the other breast?????????

So.............I am freaked.  All this medicine to kill cancer and I ended up with cancer in the other breast while on same medicine.  Then being told am disease free and yet had six weeks of radiation, more herceptin til next Mar and on arimidex.  Am I overreacting here>>>>????  I have been doing great with all this so far til this and now am bowled over with it.

So triple positive is good.  We do have the drugs, thank the Lord.  I kept hearing triple negative and thought that was what I had but I have triple positive and that is a good thing.  Go figure.

This whole cancer thing is mind boggling.  Anyone out there???  Help!!! Calm my nerves.  sooth my soul!!!!!!!

suzieq60

Hi everyone, I am located in Brisbane Australia. I had a 1.1cm tumour, node negative (0/5 nodes) but HER2+ grade 3 ER+ 95% PR+ 90%. Surgery was 2 weeks ago. Not seen the oncologist yet (this Thursday). Luckily we already know him as he treated my husband for bowel cancer so I'll be in good hands. I'm glad to see all of the posts that favour TCH over AT-CH as I'm not keen to end up with permanent heart problems. I'm having a pre treatment echo today. Also had a bone scan and cat scan this week cheking for any spread. Wish me luck.

jezza

Hey suepen....I will send you a link to the Aussie forum. Often helps to chat to locals..we have quite a few from Qld.

I am in Melbourne.

jezza

jezza

Have sent you a Private Message suepen.

jezza

Gizzie

 Hey Jap:

Being triple positive means you have options with drugs.  Triple negs don't have as many options so out of the two yours is something they are currently treating.  That is my understanding as I am the same and was getting confused so I did a lot of reading.

Keep good thoughts!!!

suzieq60

Anyone highly hormone receptive?

 I'm 95% ER+ and 90% PR+ as well as the dreaded HER2+

Are these high percentages good or not? I guess I'll find out tonight when I go to see the oncologist.