Just do not know what to do...

Amandajayne
  • By Amandajayne · January 15, 2013 at 10:51 am · 14 replies
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Hi ladies,
Well after starting on letrozole last dec 2011 for wide spread bone mets it went well for 5 months and then stopped working, then faslodex was added and that did not work at all so in all I have been without anything working for the last 7 months so have just started Afinitor and aromasin but the onc said only a 15 percent chance of that working and dreading the side effects, maybe I should just go on to xloda but just confused at the mo. I wonder how long I wld have if I stopped all treatment except zometa which I get on with so far.
Any thoughts to give me some inspiration would be great.
Just very worried at the moment..

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14 replies   

Happy-

Amanda, I cant give you any advice, I have no medical knowledge at all.

seems your best bet is to listen to your doctors and get a second opinion.

I wish you well and hope that one of our more knowledgeable ladies come along and give you some useful information.

Best wishes. Glo

Breezy1

Amanda, Have you been on Herceptin. I noticed that in your original description of your cancer and its biology/chemistry that you said that you are HER+ If so, why not herceptin? I certainly understand your fear, but don't let that rule your decisions. If you don't feel good about your docs suggestion then how about as Happy suggested - you get another opinion. You just never know when something new will come down the turnpike and stop at our exit.

Bestbird

I agree that if you are Her2+ Herceptin should be a viable possibility, and it is generally not too hard to tolerate. You may also want to have a look at the following AI's.

1. A combination of the two anti-estrogen drugs Arimidex and Faslodex extended the median survival time of women with Stage 4 hormone receptor-positive metastatic breast cancer by more than six months compared to those who underwent standard treatment with Arimidex alone.

2. Fareston (toremifene) A study looked at 91 postmenopausal women who had been diagnosed with advanced-stage hormone-receptor-positive breast cancer that grew while the women were being treated with either Arimidex or Femara. The women were randomly chosen to get either Aromasin or Fareston until the cancer grew or unacceptable side effects developed. Women who got Fareston were 38% less likely to have the cancer grow than the women who got Aromasin. About twice as many women who got Fareston got benefits from the medicine compared to women who got Aromasin:
• 47.5% of the women who got Fareston got some benefit from it
• 26.7% of the women who got Aromasin got some benefit from it

warrior1

I'm wondering why you're not on Herceptin or tdm1? Her2+ is the only criteria for Herceptin...........Maybe you need a different opinion. The different AI's, as 'bestbird' mentioned are viable options. Your best bet is to only start chemo if all other options are gone. Aromasin/Affinities would be appropriate............after all anti hormonals have failed. Even still, I'd try to get a 'Caris testing' done. This can rule out whether the Aromasin/Afinitor combo will even work (instead of having yet another drug fail...........and it can let you know if it is even worth the time and side effects). The 'Caris testing' info can be obtained by posting the question to 'flymom'.

Hope all goes well.
Best regards.
Anita

bevvy22

No one was more resistant to the idea of chemo than me, and I still hate the idea. But fact is, the cancer will spread if you aren't on something. Some excellent suggestions here about 2nd opinions etc. but the fact is you do want to try and stay ahead of it if you can.

While chemo can be debilitating, doing nothing is even scarier. There was a member here who died recently and she had refused all treatment except prayer. It was so difficult for us to witness because she had options and never listened to anyone. She'd post these frightening descriptions of what was happening and then we'd all ask her "have you looked into this?" and she wouldn't answer. A few weeks later she'd post again and it would start all over again. I hope she's resting in peace, because her last months had to have been awful.

We all have to make our own decisions and I'm not saying you should or shouldn't. But now that I've crossed over into "better living through chemistry" I'm finding that there ARE doable chemos when other avenues have been exhausted, especially if you have an oncologist who is artful at balancing quality of life with keeping the cancer in check. I think the best is a combo of alternative and conventional, though it's hard to find people who do that. Dr. Block in Chicago is a good one to check out if you want to do it in a more holistic way (wish he was here in NYC). Also Dr. Nagourney / Rational Therapeutics is highly respected for chemo sensitivity tests too.

7975

Hi Amanda- I don't want to give advice but I will share what worked with my wife as she is HER2+ and has had several bone mets. Taxotere with herceptin worked great. The side effects of taxotere were tough, but it worked so well she was able to take a good break.

She later tried Xeloda combined with Tykerb for tumors in the lungs, which also worked well. I know its hard to make decisions like these when side effects can cause many hard days. I encourage you to make the best decisions that you can.

Matt

LauraW43

Please try the xeloda. Side effects can be manageable or dose can be changed, but at least give it a try. Got me NED, and I know everyone's not the same, but the S/E's are not bad enough (in my case anyway) to risk further progression because of that particular fear!!!!!

I know everything is scary, right now.

LW

sistersnevergiveup

I would go w/ the xeloda. My sis had good results with it. Afinitor can really backfire as it did w/ my sis. Best of luck to u :)

Amandajayne

Sorry did forget to mention oestrogen and progesterone receptors were positive but herceptin receptors negative at 1st dx in 2007.

sistersnevergiveup

You have the same type f BC my sis had. Watch your liver panels like a hawk on afinitor. If they are going up reconsider the afinitor as it is very hard on the liver and has caused liver mets in people that did not have them previously. My sis had the liver mets to begin with. Her liver enzymes were ging up but the doc wanted to give it 3mos. She developed abdominal swelling and then edema in legs and then liver failure. I am not trying to scare you, just sharing so that you can watch out for yourself. Hugs :)

Marsha47

Xeloda is easy to tolerate. I've been on it over 2 years. Give it a try!
Good luck.
Marsha.

Almost10

As several have mentioned above, consider xeloda. I have been on it for 6 months with very manageable side effects and no progression at all. Prior to this I had tried AL's getting very limited results.I am dealing with mets of the entire spine and ribs, plus two spots on the brain. 2001 I was diagnosed Stage 2b, remaining NED until June 2011, when severe right rib pain led to finding I was no longer NED but showing cancer had returned. Now I am stage 4 and very glad to have xeloda available.

SailonSandy

Two thoughts:

1. I was HER2 - first time with BC, but it mutated, and the MBC in my bones is actually HER2+. So your doc should have checked to confirm this when your mets happened. Ask about it just to be sure!! I understand this happens in about 15% of the cases.

2. Recent research indicates that Herceptin sometimes works even in HER2 - women. It's side effects are minimal, so perhaps your doc would be willing to try it even if you are negative. Insurance may or may not cover its use in a HER2 - person, but again, it is worth asking.

I hope you find something soon and with minimal side effects!!

flymom767

Your Her2 status is a bit confusing from your profile.... So, you are ER+/PR+ and Her2-...... As for stopping all together.....I would reiterate what Bevvy22 said.....I think you have not exhausted all your AI's yet---these are the hormonal treatments..... this is a general chart of that treatment line

tamoxifin/femara (letrozole)
faslodex with/without arimidex/aromasin
and every combination of the 5
then affinitor/aromasin

Bestbird has spoken of fareston....that I would love to know more about and will ask my onc about on Monday. Can anyone add anything to Bestbird's info?

Then you move on to chemo. This disease is treated by trial and error unless you do a Charis Target Now test on a preserved tumor or you do a test on living tumor tissue (Rational therapeutics/Weisenthal.org) Xeloda is a good workhorse for most. The list of chemo choices and combos is infinite.... I would suggest that you search a bit more on this site.....taxotere, abraxane, herceptin, tykerb, tdm-1and any other chemo anyone's mentions as that may help you find direction..... and keep asking questions!!

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