lolly and others with neck nodes

lindaw · 11-11-2006, 02:39 PM

Hi
Can you tell me how big your nodes got and how long they were like that before you received treatment.I am waiting for the tykerb and its getting bigger . I was hoping my onc would let me start the xeloda until then, I have had xeloda befoe and although it stiopped working on my skin mets I think it can be effective in other areas.

love
linda

Lolly · 11-11-2006, 05:00 PM

Hi Linda,
I had several nodes in my neck area that started out about pea sized and got about the size of lima beans over a 3 month period before I started Xeloda. They were "twingey", with tenderness and some sharp pains once in a while. These nodes responded pretty well to Xeloda; after about six months of 500mg twice a day we couldn't feel them anymore and the PET/CT was clear. They remain NED, but I still remain on Xeloda with Herceptin as I just finished radiation for right axilla nodes that didn't respond to the Xeloda but have to the rads. Waiting a month or so to do scans and hope for another "all clear".
Hope this helps Dear, and keeping my fingers crossed for Tykerb for you

<3 Lolly

lindaw · 11-11-2006, 09:10 PM

Dear lolly

Thanks for replying. Now I am worried - mine is at the base of my neck on my left side( my left looking ahead) and is as big as a golf ball. This is why I am panicing.

love
Linda

Lolly · 11-11-2006, 10:53 PM

Dear Linda,
If you're feeling panicked about the wait, then call your onc Monday and ASK to be put on Xeloda while you wait for Tykerb...I think your peace of mind is an integral part of this whole process, and it would certainly ease my mind if I were in your shoes to have Xeloda to fall back on.
Maybe it isn't the same over there, but I know if you just keep insisting it might help.

<3 Lolly

Sheila · 11-12-2006, 05:48 AM

Linda
Mine were about the size of a big pea or small lima beans (I hate both) just as I hate these pesky neck nodes...I went on Xeloda and they disappeared in 2 cycles, but when I went off Xeloda, they came back within a month. So I am back on Xeloda, they still aren't gone but they are shrinking...Xeloda seems to have a good response on the neck nodes...Lolly and i have gotten relief...I can understand your panick...call the Onc. and see if they will start you on like 2500 mg opf Xeloda a day...thats what I started on but it had to be reduced to 2000mg as I developed the foot syndrome. Hope this helps, I will be praying for a quick resolve to your misbehavin nodes.

Lolly · 11-12-2006, 08:48 AM

Hi Again,
Just want to add that the Xeloda could also serve to keep that node STABLE and help prevent spread, while you wait for Tykerb. Just be a squeaky wheel and your onc will have to listen!

rinaina · 11-12-2006, 10:15 AM

I have a stupid question. Were these nodes malignant? I get swelling in my parotid gland from time to time due to my Sjogren's Syndrome and am followed by my ENT doctor and actually had a a benign tumor removed in my left parotid gland but I am curious as to how do you tell the difference between nodes and a swelling in parotid gland?

Sheila · 11-12-2006, 12:16 PM

Rinaina
I had mine removed 1x, they tested Her2+++, jsut like my BC...then they came back after being removed...they can do a needle biopsy...they really would rather not remove them so as to judge treatment effectiveness.

Lolly · 11-12-2006, 05:48 PM

My surgeon attempted to remove mine at the first recurrence because I wanted it out, but it ended up being too close to nerves and so he just took a portion of it which tested malignant, her2+ like the primary. At my last recurrence a year ago, the surgeon simply did a fine needle aspiration to confirm activity which had shown on the PET/CT, and again the nodes were her2+, although these were nodes on the opposite side as primary.
PET/CT's are done on me now to monitor progression as they have proven to be accurate. But whenever there's a question about her2 or hormone status, a biopsy or fluid sample is needed.

<3 Lolly

lindaw · 11-13-2006, 01:32 AM

Thanks everyone

Haven't heard from my Onc but the research nurse rang to say I should have it this Friday - at best - but probably next Monday. I would still like to begin the xeloda but my Onc doesn't seem to be responding to my call.

love
linda

Rendi69CA · 11-20-2006, 01:10 AM

When I start off with herceptin, my nodes was enlarge on the base and my neck. Last month the lumps went down and start my herceptin treatment 3 week and I am getting the lumps back. I was thinking I am doing so good and now this. I going to tell my doctor to put me back to weekly treatment.