Insight Appreciated RE: AC w/T or CTH

[*_Victoria_*]

Hi Everyone - My name is Victoria, I am 30, and new to this site!

I was diagnosed with Infiltrating Ductal in late Oct. 2004 and had a Lumpectomy in Dec. 2004. These are the Details: Stage 1, No NODE involvement, 1.9cm, Grade 3, PR-, ER+, Vascular Invasion present, and HER2 +.
I will be starting chemo in about 2 weeks or so. Initially, I was offered 2 options re: chemo treatment. The first being AC w/ T every 2 wks. for 4 months & the 2nd: Carboplatin, Taxotere, & Herceptin (3 weeks on & 1 week off) for 6 mons. Yuck!!
My Onc. made me very aware of the potential irreversible side effects (heart and fertility problems) of option 1. He added that this is very "standard" treatment with well documented research.
On the other hand, the CTH is supposedly more tolerable with less toxicity but, with little, if any, documented research re: the benefits of CTH in Stage 1 Breat CA patients.
The Onc. is now leaning towards the CTH Therapy for me. He seems very concerned about the Toxicity of cocktail 1 (Quality of Life issues) and seems to want to be super aggressive primarily due to HER2 status. I am being treated like "I have mets that have not been found yet" according to my Onc. (Wow!!)
If anyone could tell me what they think of CTH for Stage 1 as the initial treatment option -- I would most appreciate it. Is this the way to go????
I value all of your opinions.
ps. If anyone knows on any research re: the above issue, please let me know.

Thanks so much - Victoria:)

[StephN]

Hi -
You do not say where you are being treated, but your med onc seems to be right up on the latest for Her2 pos patients. There are a number of women who have posted to this site in the past few months on this
Carbo/Tax/Herceptin option.

You may SEARCH THIS SITE for those posts or just "search engine" those three words and some links will come up. Look for "M.D, Anderson trials."

I WILL say that Adriamycin did not work for me in containing my cancer as it went quickly to my liver after taking that, Taxotere and radiation. A trial with Herceptin at outset was not avail for me at the time of my diagnosis or I would have fought like a tiger to get it as I had heard of the good work of this drug!
It has worked for me since to get rid of the liver tumors and stave off any more progression in my body.

[*_Victoria_*]

Hi Steph,

Thanks so much for the response. Since I am new to this site I am slowly learning that there are several past postings re: CTH. The more I read the more I am ready to demand this treatment cocktail!!!! I also feel so fortunate that I am being offered Herceptin. It hurts to read about the women across the world that are "looking" for it(Herceptin). That is not right.

Anyway, in regards to my Onc. -- He is wonderfull! I feel so comfortable with him. He calls me all the time. I am in Cleveland, Ohio and being treated at "The Cleveland Clinic". My Onc. also teaches and is active in the research arena besides treating me!! He often makes me feel like Im his only patient!!! Which I know Im not, but a good feeling.

I know that I could go for a second opinion and always have that option available to me. However, I am a bit overwhelmed at this point with all these Dr's appts. and general testing appts. For now, I am trusting his judgement along with the rest of the "Breast CA community"(that includes all of you!). You are all so knowledgable.

I have a clear Bone Scan and am waiting with DOUBLE, TRIPLE fingers crossed on my PET/CT scans that were conducted yesterday.

Thanks so much Steph!

Victoria

[Lolly]

Victoria, I do agree with Steph, your onc is very progressive. I was dx at Stage IIIB, proceded with AC/T and Rads, finished in May '00 and was dx with mets in Jan. '01. Now Herceptin keeps things contained for me, but if it had been available for me as first line tx I can't help but think it would have made a difference in time to progression. You, at much earlier stage, would most lilkely benefit greatly from Herceptin now, given that you have a high grade Her2+ cancer with vascular invasion. Your onc is right on the money in wanting to treat this aggressivly. And, 6 months is not such a long time, really :) Best wishes as you make your decision.

Love, Lolly

[Former Clevelander]

Hi Victoria,

I used to live in Cleveland (Westlake). Where do you live? I took HTC after FAC and survived it quite well. I know it seems like a long haul, but you're being given the very best drugs around. Your doctor sounds awesome. I would love to know his name. Also, why did you have the bone scan, PET/CT scans? Is this part of the doctor's practice to do these before treatment and after surgery? or before surgery? What's your e-mail and I'll e-mail you? Thanks.

[Audrey]

Dear Victoria, hello! and welcome to this board. Just wanted you to know that I am also from the Cleveland area (Shaker Heights) and was successfully treated at the Cleveland Clinic for my stage III breast cancer over three years ago...I had a large tumor, 11+ lymph nodes, ER- and Her2+...I was given A/C, followed by weekly Taxol, radiation and 52 weeks of Herceptin under a clinical trial. I think that the Adriamycin really worked for me, as well as the Herceptin...I have always trusted my onc. at the Clinic and would encourage you to take the Herceptin if offered --I do think it is the best thing right now for us Her2+ gals...Good luck with your treatment, whatever you decide. And I would also recommend having a port-a-cath inserted if you are going to be getting weekly IV , it makes things so much easier, in fact I still have mine in since I go to the clinic for bloodwork every 6 months....
Best of luck, Audrey

[AlaskaAngel]

Those who posted before me are in tune with current research on this question. I can't tell for sure but I may be the only one posting so far who is Stage 1. I keep in mind the understanding that more than 50% of the women who are Stage 1 would never have a return of cancer if all they did was have surgery with clear margins.

Having said that, it is important to recognize that being HER2+ is SAID to be a reason to think we are among the less than 50% whose cancer would return if we don't go through additional therapy.

However, before I would jump on the bandwagon I want a good clear explanation from someone as to why oncologists continue to use HER2+ as a persuasive argument (if not a threatening stick) for why those of us who are HER2+ are more prone to have a recurrence, and yet as a group oncologists so far do not agree on that assumption strongly enough to list being HER2+ as a defining factor in the standards they specify as generally accepted practice for advising patients with bc about which therapy to have.

A.A.

[*_Victoria_*]

Hi Everyone--- You words make me feel so confident and reassured. Thank you.

To answer some of the previous questions: I had all the scans done as a precaution in order to rule out mets. Since I do have vascular invasion. Im glad that the Doc ordered them -- And.. it is official...they are clean and clear. Cause for a mild celebration!!!! OK maybe huge!!!

I live in Tremont for those of you in the Cleveland area. It is good to hear such positive feedback about the Cleveland Clinic!!

I do have a few Q's:
What is a Port-a-Cath?? I think I have an idea but, details would help - like where does it go?? How does it work? What is the procedure for putting it in?? Doc has not mentioned this yet. I think I want it though.

Do you loose hair on the CTH??

My email: VictoriasSea@aol.com

Thanks everyone!!

[Lyn]

Hi Victoria, having just finished H/T/C on a 26 weekly dose and having a porta cath since 2000 the side effects I got was yes hair loss caused by the Taxol, I had lost hair before on AC and Taxotere, I found that during the last 2 months of treatment I took Flaxseed Oil Capsules 1000mg 2 in morning 2 at night and my hair started to grow back while still having chemo but not on the arears that were previously radiated. Not everyone gets neuropthy, numbness in the fingertips and feet but I did, that was how I stumbled on the Flaxseed Oil caps trying to reverse it apart from that I had no problems. My Porta Cath was put in as a day surgery, it is connected to the Jugular Vein and you have to lay still and rested for a couple of hours after, not hard to handle, it was a little uncomfortable the first week but it is a foreign body just under the skin. Mine is prominent which the nurses love, I had 16 lymph glands removed so could only access my right arm for veins and they got pretty fried from the chemo. You only feel pressure when they insert the line which is similar to putting a thumb tack on the wall and that is it, they flush at the end with heperin to keep the vein clear and if not being used for chemo then it is flushed once a month. Blood tests can be taken via the porta cath but not things like nuclear dyes for CT scans as the pressure is too much for the apparatus which is usually made from titanium so you don't set off metal detectors. B12 is also recommended for numbing and Glucosomide which is advertised for arthritus, my physio lady told me that the Glucosomide takes about 3 months before it takes effect so it wasn't my imagination when I thought it wasn't working. I think that just about covers it, I was told they can stay in for up to 5 years but it there is no problems with it then who knows how long.

Love & Hugs Lyn

[jhandley]

Hi Victoria
I was dx with Stage II BC (grade 3, PR/ER -) nearly four years ago with 1 lymph node involved out of 13. I went on a clinical trial with Adriamycin/taxotere 3 cycles of each 3 weeks apart..followed by 3 cycles of CMF 1 month apart... so 9 cycles of chemo. (30 weeks). followed by 6 weeks of radiation treatment. About two years ago I asked for my tumour (in the tumour bank) to be tested for Her 2 and found it was positive. Since then I have been periodically trying to keep up with the Her 2 research. I went to a public lecture in Melbourne given by Denis Slamon who was instrumental in bringing Herceptin to reality and was very impressed not only by the Herceptin results but also the latest results that are being achieved with herceptin in combination with other mono. antibodies.
At the same time I was having my chemo. two women were participating in the Herceptin trial..they both had advanced BC. Now I know they are both off Herceptin now but I believe that they are both stable 4 years on.
If I was given the option of having herceptin as adjuvant treatment when I was dx I would have taken it.

I also take flaxseed oil and have also seen some positive research on the omega 3 fatty acids contained in flaxseed oil and her 2. The other thing I am religious about is Coenzyme Q10 (100 mg ) a day which also has some documented anticancer effects as well as general health and feeling good.

I have also read that after about 4 years the rate of recurrence for Her 2 BC levels off to about the same as non Her 2 BC.
I would like to keep in touch with others who hav been dx with Her 2 Stage 1 or 2 so keep in touch. I am thinking of you.
Jackie

[AlaskaAngel]

Nice to meet another early stage HER2 here, Jackie.

I just want to say that I have been taking CoQ10 as well as freshly ground flax seed daily (as well as using olive oil for diet) ever since diagnosis. None of these are expensive. Other than that, I do try to get at least 20 minutes to half an hour of sunshine for natural vitamin D to help the bones, and on days that I can't do that I take extra vitamin D. I was 1 1/2 years out from treatment before I could handle very much exercise, but it is easier now. These are really simple things.

It is a little hard to post here since I am NED and I am not sure everyone wants to hear from HER2's who have stayed NED, but at the same time I think maybe it is meaningful, even if only in giving us all more information about how NED HER2's do over time.

AlaskaAngel

[Lolly]

AA, just want to tell you that as a Stage 4'er I find your posts to be very inspiring and am so so glad for you that you are early stage, NED and doing so well adjusting to the new normal, as even being early stage you know your life has been forever changed. It's positive and affirming to see someone like you reaching out to others with more "experience" if you know what I mean, and being a sympathetic ear to other early stage'ers. It helps me to know I may have something to offer to you. So I appreciate your posts, I understand also that it may be difficult for you to post here as you're confronting the possibility of mets head on rather than hiding your head in the sand, and that's the best way to maintain control of the fear of recurrence. You are a valued member!

Love, Lolly

[*_Victoria_*]

Hi Jacki, AA, and Lolly,

So nice to hear from all of you. It is sooo important for me and Im sure for many others, to hear of early stage HER2er's who are NED. That is the goal.

Thanks for all the input on the Herceptin issue. As I get closer to the start of chemo I begin to realize how terrifying this treatment process is. When im feeling (mentally) strong i think to myself that I will fight not only for myself, but all of those fighting this batltle with me.

Again, if anyone hears of any research - do share!!

I just purchased Flaxseed Oil caps and the Q10--have not started them yet.

Thanks so much - Victoria

ps- how do you register on this site b/c I attempted to but its not "official"!?

[louise a.]

hi all,
newcomer here...
i have stage 1 bc, er/pr neg, and her2 +++ with 2 pos. nodes...ive been given info on a trial where id be put into one of 3 groups of different combos of drugs, and my onc. has said shed like me to take dose-dense adiramycin and cytoxan for 4 cycles followed by taxotere for 4 cycles...that sounds brutal...i dont think herceptin has been mentioned but weve only met once...the port goes in monday and treatment begins soon and im not sure which way to go...any ideas?? ( the possibilty of node removal and radiation still loom, but nobody seems in a hurry to do any of that right now , thank goodness)

[madubois63]

Victoria - a port-a-cath is a "button" like device which is attached to a main artery near the shoulder area. The port is about the size of a quarter and a life saver. The nurses are able to draw blood for tests and, of course, administer chemo treatments with ease! It's a tiny pinch to attach the IV needle. As someone else previously stated, it is a one day surgery and in the scheme of things, no big deal. Good luck in your decisions and your battle. Maryann