Help -- I am confused

callen03 · 06-23-2006, 09:18 AM

I was diagnosed Stage IV in January of this year. I've been going through chemo since. Most evidence is gone except for some lymph nodes in my neck, which are in remission. I will go through another round of chemo, then radiation, and I will continue on Herceptin for a full year.

My question is it worse to have some evidence, even though it is in remission, than no evidence at all? Or, are my chances the same either way?

Cathya · 06-23-2006, 11:09 AM

Carla;

It seems to me that Lolly has had difficulties with lymph nodes in her neck so I would search her posts or message her. I am confused as to why you are only on herceptin for one year. With metatastic disease I understand that herceptin is indefinite providing you suffer no serious heart problems. All my best.

Cathy

Lolly · 06-23-2006, 12:00 PM

Hi; Cathy is right, I've had recurring disease in my neck, supraclivacular and right axilla nodes, so based on that have been receiving Herceptin maintenance with/without chemo since 2001 for this type of "systemic metastasis". I have had various degrees of response, ranging from complete response(no evidence of disease) to stable disease, but I've always remained on Herceptin with the only change being whether or not we add chemo in for extra punch as I seem to need that occasionally to keep things in check. My onc and I view my situation in this way; I may never be cured by the standard definition, but I have a chronic disease which so far is manageable and treatable with ongoing Herceptin and chemo. I have excellent quality of life, and my goal is to live out a normal life.

I agree with Cathy in that I would be asking your oncologist some hard questions about why you would discontinue Herceptin after one year when you are diagnosed as Stage IV. Ongoing maintenance Herceptin is "Standard Of Care" for Stage IV disease.

Hope this helps, don't hesitate to ask more questions and especially research this site for articles to print out to show your onc, if you feel you need to stay on Herceptin and need more ammunition. The time to make that decision will be when you've been on Herceptin for the year that's been recommended, and if you're in complete remission(meaning absolutely NO EVIDENCE OF DISEASE or NED), and if YOU are comfortable going off Herceptin. It's become something of a security blanket for many of us Stage IV'ers, but the fact is that some of us do have evidence of resistance to Herceptin after long use, meaning that we need chemo added in more often to help Herceptin do it's job. There is a school of thought that says, if you can afford to take a break from Herceptin before you develope resistance, then if you have a recurrence it will work as well as if you've never been "exposed" to it.

This is a big decision and requires total open discussion with your oncologist.

<3 Lolly

Sherryg683 · 06-23-2006, 12:53 PM

I thought remission meant there was no sign of the disease NED, am I wrong? When it doesn't get any worse, isn't that no sign of progression or disease is stable. I have been NED since April and have been telling everyone I am in remission...I would insist on being on Herceptin indefinatley also, being a stage IV. Don't know why they would take you off of it after a year if it's working for you...sherryg683

Lolly · 06-23-2006, 04:59 PM

Sherry, you're right, no sign of disease or No Evidence of Disease(NED) means one is considered to be in remission, and when there's evidence you still have activity but it's not spreading that's considered stable.
If you're considered to have NED then you're in remission; however, continuing on Herceptin in order to stay NED is what most of us Stage IV'ers prefer to do.
I wasn't quite clear from Callen's post whether she's NED or whether there's evidence the cancer is regressing and therefore expects to be NED by the time her course of treatment is through, so just tried to cover all the bases.

<3 Lolly

callen03 · 06-26-2006, 08:47 AM

Clarification and further questions: My oncologist told me "there has been no change" since the last scan. In others words, it hasn't grown, but it hasn't shrunk either. Does that mean that I am in remission, and is that the same as being NED?

Also, should I consider having the lymph nodes in my neck removed? If so, will it increase my chances of having it spread to other areas?

I was already concerned about being taken off Herceptin after a year. I will definitely discuss this with him.

callen03 · 06-26-2006, 09:02 AM

Sorry, additional information I should have told you. My cancer originated from breast cancer, and I had bilateral surgery. The tested 21 lymph nodes, and 17 were positive for cancer. Since then, I found a lump in my neck. I had a PET scan, MRI, and CT scans which revealed some very small nodes in my abdomen (no longer showing up on the CT scan) and several in my neck (no change from last few scans).

Sheila · 06-26-2006, 04:14 PM

Carla
Like Lolly, I also have problems with the neck nodes. I have been on Herceptin for 2 1/2 years, and Xeloda for 3 mos. I had them removed once and they came back in a year and a half....my Dr does not advise removal as there is nothing to monitor on how the Xeloda is doing at treating the nodes. Mine recurred while on the Herceptin and that is why the Xeloda was added. I would fight to stay on the Herceptin...as long as it works....my onc. said I would be on it 5-7 years at least if it continues to work. I am also Stage IV.