What is good for metastatic decease?- being agressive or not

Julie2 · 08-14-2008, 05:15 PM

I just want to get some opinions about how to manage the metastatic desease. What increases the longevity? being aggressive or keeping the options for later and managing with minimal or no chemo?
I came to know many people on this board who managed their metastatic desease with just Herceptin or someother form of non-chemo options even when they have lot of desease. I am really amazed at their courage for not getting panicked and remain calm in such a stressful period.
On the other hand many people have succefully used aggressive chemo and remained NED. I guess each one's tumor biology is different but in general I am interested if anybody has any opinions form their's or others experiences.

I am currently on Navelbine and Herceptin for my mediastinal nodes and scan is coming up in three weeks.

Thanks,
Julie

Sheila · 08-14-2008, 05:25 PM

Julie
Are you on anything with the Navelbine? I am wondering why not Herceptin with it...I have been on Herceptin Xeloda, then Herceptin Avastin Taxol, then Herceptin Taxol....always an agent with the Herceptin to keep things Stable, not NED but stable....I have been doing this for 3 years straight for supraclavicular nodes. Good luck on your upcoming scan....I know how nerve racxking they are!

Julie2 · 08-14-2008, 06:01 PM

Shiela,

Thanks for the response and I am on Herceptin and Navelbine.

Julie

Mary Anne in TX · 08-14-2008, 06:42 PM

Hi Julie!
When I was diagnosed, I made the decision (with my onc) to be very aggressive with treatment. The reason for my decision was that I was in good health and felt pretty good, except for being tired, and figured I'd fight hard while I felt good. I was highly motivated to take what I did. Who knows what is best? I just trusted my instincts and did what felt right for me! Did it work? I don't know! But I'm NED and doing well. Someday they'll have a test for us to take to tell us what to take, if it will work, and help us decide. But for now, I think we get lots of opinions, read a ton, and do the best we can to "listen to our bodies".
Best of luck on making yours, ma

pattyz · 08-14-2008, 07:12 PM

Julie,

My initial dx was Stage IIIb, too. I had two tumors, plus Inflammatory and 6 pos nodes of 26 taken.

My mets occured at two and a half yrs., July of '02. Mediastianal node/s, spot on lung, spot on pelvis. I had a surgical biopsy of aortic window node to confirm.

My tx was Navelbine/Herceptin. In only four rounds, I was NED in body, and I opted to stop tx. All treatment.

I was dx'd with brain mets in Sept. '02, and that became my focus, as long as my other scans were good.

For the past three yrs I've been on Xeloda/Temodar for my brain mets... but my bod is still NED, as far as we know. So, with this tx, we also added Tykerb last fall. My brain mets progressed a bit, but I MIGHT be getting an advantage with it to my body along with the Xeloda now.

Anyway, that still leaves three yrs with no tx for my 'body' at all.

It is generally wise to begin with the lesser of 'evils' unless ofcourse the mets are raging. Then combos come in to play.

However, as we are all individuals, we need to do what we and our oncs feel is the best course for us.

Hope that does not confuse, but offer another opinon.

pattyz

madubois63 · 08-14-2008, 07:19 PM

Mary Anne - they do have that test. I am sure someone will chime in with info about the test.

Julie - I would wait until the scans to before making any changes or decisions, but certainly research and have info ready to discuss with your onc. I personally would rather do everything possible (and I have) to keep things at bay or to beat it back and earn NED status. My very dear friend, not HER2+ and ER?PR- listened to her onc and waited to do any chemo. It was a total mistake and way too late to do anything when she took her last breath. I know people don't want to hear the bad side of cancer, but I am still very angry at my dear Stephanie's onc for not doing anything. Go with your heart, make the best decision FOR YOU and don't let anyone try and force you in to something you don't want to do. Good luck and God bless you and your decision...

Sherryg683 · 08-14-2008, 09:22 PM

My initial treatment was agressive and it must have worked, at least for the time being. I remain on Herceptin indefinately. I am definately of the belief that you hit it with all you got. If it's there, why go easy on it and let it progress more. Why save a chemo for later, there may be no later...sherryg683

AlaskaAngel · 08-15-2008, 09:46 AM

I've seen quite a few times here where the sequence of treatment selected ended up with the person ineligible for various trials because they'd run through the gamut of treatments so fast. Trials often are based on the latest info available. Good luck with your decision.

AlaskaAngel

sarah · 08-16-2008, 04:05 AM

maryann i hope you feel as great as you look! you're one of my insprirations
julie i would find it difficult not to be aggressive but i agree with maryann at least be as informed as possible and maybe get more than one opinion on future treatments.
hugs and love
sarah

VirginiaGirl · 08-16-2008, 04:50 AM

Julie, I just went for a 2nd opinion to a breast cancer specialist at Johns Hopkins, and your question was a main reason I sought that other opinion. My onc and the JH onc (even more so) are both of the opinion to hold off on any chemo as much as possible, treat as minimally as possible, to maintain quality of life and to minimize cumulative damage that occurs to bone marrow each time we do chemo. The JH onc told me that at my present point (my signature isn't current. I had about 6 spots of bone mets recur earlier this year and in June completed 12 weekly Taxol/Herceptin leaving only 3 spots in my bones; still no history of mets to organs), that I don't need to "hit a mosquito with a bazooka," and if it were her she would hold off on "the big guns" until I really needed it. Since I am only 43, also strong and healthy except for cancer, work full time and have a 10-year-old daughter, I'm trying to find a balance between treatment that's aggressive enough to keep me close to NED but allows me to live my present life without being sick all the time. It's a tough decision, and as both these oncs told me, if you ask 5 different oncs you'll get 5 different treatment recommendations. Waiting for scan results is hard, but will help you make your decision. Good luck!
Peace and Blessings,
Liz

Carolyns · 08-16-2008, 09:26 AM

Julie,

Great question and one most of us mets girls ask or think about at some point. I have been dealing with bc for 20 years and I just turned 52. The first bc I had spread to the lymph nodes and I did CAF. The second bc 9 years later was treated by a mastectomy alone in the other breast. 8 years later I had mets and those were discovered 2 1/2 years ago. I went to 3 treatment centers and was going with the big guns first based on the first treatment center's advise. Upon visiting 2 other major bc centers that ONLY treat breast cancer it was decided (by all) that we had time to try the least life changing options first. The timing was perfect because the hormonals stretched out treatment until something new (Tykerb) was available. I made it 2 years in treatment without losing my hair or missing life as a single mom raising a young boy while working full time.

This past March I had a set-back and had to go to Abraxane and Carbo (Carbo for 1 cycle only). For now I am on Abraxane, Herceptin and Zometa. I missed work for one month and lost my hair...but this is 2 years later and prior to this I had only been on Gemzar for 6 months. Now I am back on track working full time, taking vacations and happy that school is about to go back in session (do all mom's feel guilty about that?). Life is good.

So far no one knows the answer to the sequence of drugs for each individual or all of the doctors would agree. My doctor believes that sequence of drugs should work to allow the best quality of life while keeping the cancer in check - when the situation permits this option. Unfortunately not everyone's situation permits that option. Also different doctors have different opinions on sequence and some believe in using the big guns first. Who knows??? That is why we must weigh in and do what we think is best.

I feel confident with my decisions because I thought long and hard about them and then took a leap of faith. That is all I could do because I am in uncharted territory....we all are. If I had gone with the big guns first I would have backed up that decision too. We all make the best decision that we can and hope for the best...

Best of luck to you on your journey.

Love, Hope, Peace, Carolyn

Sherryg683 · 08-16-2008, 08:07 PM

After reading the responses, I can see both sides. It does make sense to want to control the cancer and have a good quality of life and still save the stronger drugs for later. I guess I would just like to destroy the dang stuff so it wouldn't come back at all, if that's possible..sherryg683