Anyone w/ 4+ nodes recur more than yr after chemo

[Christine MH]

Hi,

Back in the days of the old board, I remember looking at the profiles of people and being shocked because everyone with lots of nodes involved seemed to recur within a year of finishing chemo.

Right now I am trying to decide what to do regarding the latest herceptin findings (aren't we all). I had 8 out of 19 nodes involved and had my last chemo (taxotere) in mid-June last year and finished all my treatment in late August. Since I would probably have to pay for herceptin out of pocket, I want to make sure that I might actually benefit from it.

Take care,

Christine

[Kathy]

Hi Christine,
I would try for the Herceptin, but I had 12 of 24 nodes involved and did not recur for 19 years following agressive chemo--so it does happen.
Kathy

[Lisa]

Christine,

What is your HER2 status? ++ or +++

Love and light,

Lisa

[Christine MH]

3 on IHC and very aggressive.

[StephN]

Hi Christine -
I don't know why, with those path stats, you would not qualify to get herceptin anyway with the new reports showing such good results.
Your med onc should be approachable on this subject, and can write his recommendation for you to get herceptin so that your insurance would pay.

You state that you would have to pay for your treatment, but have you really checked this out thoroughly? You may have a copay, but should not have to pay for all the cost to get it for one year.

Go for it!

[Rozebud]

Christine - Most of the multiple node positive women I know recurred later, like between 3 and 5 years. Just had one with 15 nodes recur after 6. Don't know most of the longer one's her2 status as they didn't check it at the time. From what I understand, the highest probability is between 1 and 3 years from dx...but doesn't mean it can't happen. I have 11/18+ nodes. I would take a look at the webcasts from ASCO this week...it might help you with your herceptin decision. The biggest benefit from herceptin was NOT in the first year (per the slides I looked at last night) - it was in years 2 and 3.

[*_anne_*]

Hi Christine,
Try to get the Herceptin. Your ins. company can be appealed to cover. Ask your onc to describe your situation to them and they might cover it. If not Genentech has a reimbursement policy. You can go on their website or ask Joe. They will help people pay for it other wise a year's worth could be $100K.
Take care,
Anne

[Barbara H.]

I had 7 out of 9 lymph nodes in May of 1998 and recurred again last May, 2004. I wish I had known about this website before a recurrance because I might have tried to get into a trial for herceptin. I felt somewhat safe after 5 years. Not the case.
Good luck,
Barbara H.

[Esther]

Christine, if I had a choice to make, I would opt to try to get the Herceptin.

Take my case, in Jan 2002 I was stage 1, no nodes pos. Feb 2004, I was diagnosed with bone and liver mets. My liver mets were so severe that my liver was shutting down, I was jaundiced, and even my eyes were yellow.

Because I had no nodes pos, I was not even offered the Herceptin trial. Oh well....

Check with your insurance, you might be eligible for coverage.

[*_Peggy_*]

Christine, my original dx was just barely stage II - tumor size 2.5 cent. and NO NODES INVOLVED. My mets spread (left lung) was found 6 months after I completed chemo (3 months after radiation completed).

It just goes to show - it's very unpredictable. I think if you should do whatever it takes to get the herceptin.

Peggy in Florida

[*_Peggy_*]

Christine, my original dx was just barely stage II - tumor size 2.5 cent. and NO NODES INVOLVED. My mets spread (left lung) was found 6 months after I completed chemo (3 months after radiation completed).

It just goes to show - it's very unpredictable. I think if you should do whatever it takes to get the herceptin.

Peggy in Florida

[Christine MH]

Hi folks,

Ok, Barbara H's response clinched it. I will try very hard to get this. The matter is complicated because I am in the UK, where oncologists are much more restricted about what they can do, which is also why the whole issue of payment arises.

Best wishes,

Christine

[Lisa]

Christine,

Find the abstract paper on this site from ASCO that talks about the recent trial which was halted because of great results. Copy that and take it to your onc. Maybe that would support your case.

Love and light,

Lisa

[Cara]

Just to say good luck in your quest Christine.

I was given Herceptin here in France with a Dx of 4 underarm nodes + 2 chest wall.
Maybe you can shame them into giving it to you.