Length Between Mets

HavahJ · 03-12-2006, 04:12 AM

Hi folks. I just got back from Mayo - one bone met in upper skull that was radiated. They gave me 2 to 5 years. I'm wondering how long most of you go before you get another met? Have any of you stayed only in the bone? The met was radiated so the onc will only do herceptin now (and aromasin). Is it normal not to add more chemo? I feel like I am just sitting on a cliff waiting for something else bad to happen!

StephN · 03-12-2006, 11:29 AM

Hi -
From my experience - once you have no measurable disease or are pronounced NED they do not give chemo. We are lucky to get the Herceptin and anything else.
Have you gotten the HER2 serum assay? This is another way to keep track of your cancer through blood draws. See posts above under "Dr. Carney."

Glad you are doing fine now. Don't listen to those stats as they are OLD and we are writing NEW stats with Herceptin and the other new drugs like hormone suppressors. Stay NED as long as you want to. That is what I am trying to do!

I have been off chemo for over 3.5 years now and had severe liver mets.

Sherryg683 · 03-12-2006, 05:30 PM

I thought I have read where there are many girls that have been on all sorts of chemo's for reoccuring mets. Why would they not give you chemo if you were NED and had another met pop up? I don't think that's what my oncologist has planned, I sure hope not. I will question him on Thursday about it..sherryg683

madubois63 · 03-12-2006, 07:14 PM

>>Why would they not give you chemo if you were NED and had another met pop
up?<<

If another met popped up, then you would no longer NED and chemo may be warrented at that point...

I almost didn't reply here, because once again I am the exception to the rule. I have been NED since April of 2005 but continue to get chemo (except when my counts are low). I think it all depends on the oncologist, the patient and the diagnosis... I don't have met's in the bones, but it was 4 1/2 years between my original diagnosis and the reoccurance.

Sandy H · 03-12-2006, 07:56 PM

Maryann: I guess, I don't understand if you are NED why would you continue on chemo??? Would you not keep it for later? Besides how will your body or immune system build itself back up? I know you told me you would be on continuous chemo but I wasn't thinking at the time. I thought NED meant no evidence of disease and so no need for chemo. Maybe, my chemo brain isn't working these days. Hugs, Sandy

Esther · 03-12-2006, 08:20 PM

If you are ER +, Aromasin as a first line of treatment is reasonable. If hormonals maintain you stable there would be no need for chemo yet. I would not push for chemo unless you were facing disease progression and needed to halt it quickly.

There are a limited number of chemo options, so you want to use them when they are truly needed.

I would discuss this with your onc, and get your questions answered.

eric · 03-13-2006, 05:42 AM

I agree with Esther and Sandy; why do chemo if NED when you have an opportunity to allow your immune system to recover? I would imagine that your onc is hoping to kill off any micro cells but I like the idea of taking advantage of the time off and saving the somewhat limited ammo. I'm sure your doc is doing what he/she feels is best for you but why not discuss to ensure that you are most comfortable with this approach. I think the important thing to remember though is that there is no black and white, no right or wrong, so whatever you decide, don't second guess yourself.

Eric

madubois63 · 03-13-2006, 01:35 PM

Sandy - Although I have No Evidence of Disease at this time, I do have plueral effusions (minor) in my lungs. I had my lungs sealed so no further fluid can build up, which in turn also keeps the fluid in. I will most likely always have minor fluid in my lungs. When most of the fluid was drained 17 months ago, there were cancer cells floating in the fluid. There is no way to know if the remaining fluid has microscopic cancer cells floating around...so I am truly considered stable - not in remission. The chemo is keeping me stable and is considered a maintenance plan. My onc feels that if I stop chemo and it comes back then I will loose momentum and have to start all over again and it may be too late... Of course, this may not be the best thing for everyone else, but it works for me.

julierene · 03-13-2006, 08:36 PM

Maryann,

what's a plueral effusion?

that makes good sense to me. i sometimes forget there are the gals in here too with inflammatory bc...

for most of us, we got NED and may take a little extra and then we are done with the chemo. for inflammatory, they probably treat it more aggressively.

madubois63 · 03-14-2006, 05:32 AM

Pleural effusion is fluid build up in the lungs. The fluid (for me) is a byproduct of the cancer on the lung. I also had a build up of fluid on my heart, but that is gone now. Anyway. At first, it was thought that I had pneumonia so I was treated with antibiotics which of course didn't work. I then ended up in the ER and gained a pulmonary doctor. He drained my lung (thoracenticis). The fluid was sent to pathology and came back inconclusive. I went home thinking I had pneumonia - yeah. Before long, my lungs had filled up again (boo) and I set up VATs (video assisted) surgery with a thoracic surgeon which included a biopsy of my liver, throcenticis and Pleurodesis (sealing the lung with talc so that the lung and the chest wall stick together not allowing fluid to build up again). This surgery made my life livable. I could not even walk from my bed to the bathroom prior to the surgery - breathing was so difficult. That was 17 months ago and I am still going strong...