Need opinions, please

dede10 · 10-07-2006, 01:52 PM

I had mets with my scans & started on Gemzar, which turned out was not doing much, so switched to navalbine in July. Anyway, all total, I have been on chemo for the past 7 mos. Navalbine has realy taken its tole on me with days I am so tired & so much pain, I have lain on the couch crying.

I had scans Thursday, and I only have mets deep in the back of my neck, very small, but they have not really changed since last scans. Everything else is gone! I am sick of chemo, but my doc is going to want me to do at least 2 more rounds. This puts me into Christmas (I can never do the 3 in a row, usually 2 off, 1 of, 1 on, then off 1, then start all over.) I am thinking about taking a break for Christmas. The only scary thing is that from May-July, the mets doubled in size.

I want to keep everything at bay, but I feel I need a break.

What would you do??

I

heblaj01 · 10-07-2006, 02:47 PM

Dede10,
You did not specify which type of scan was used to evaluate the neck mets. Since they are small I think only a PET/CT scan determine how actve or inactive they are. The fact that they did not worsen is encouraging.
Also ask your onc if he would allow you to take omega-3 fish oil pills which may help reduce inflammation & perhaps progression.

Barbara H. · 10-07-2006, 02:55 PM

Hi Dede,
I have been on Navelbine since 3/06. I had severe mouth sores with the first dose. Subsequent doses have been easier except for low counts and muscle aches. My goal is to return to just Herceptin. Navelbine has reduced my mets in the bones and I have agreed to do another two months and then rescan. I do not qualify for Tykerb because I am not progressing with this treatment. I can identify with you because I have not felt great since I started on Navelbine. I do continue to teach third grade, but that is about all that I can do. I wish that I had more energy to exercise.
Good luck with your decision. I don't think think that a few weeks off at Christmas time would hurt.
Barbara H.

dede10 · 10-07-2006, 03:01 PM

I had ct scans on Thurs, neck, chest, abd, & pelvis.

I am so wore out, & feel so bad that I have trouble going to the store! I cannot imagine trying to work.

Barbara H. · 10-07-2006, 03:10 PM

Hi Dede,
Your post proves that we can react differently to chemo. I have heard that Navelbine is easy to tolerate. I can deal with it, but don't find it easy. Good luck!! You may need a few weeks off, and then need to try something else. What about Zeloda?
Barbara H.

chrisy · 10-07-2006, 05:32 PM

Hi Dede,

Sorry to hear you are feeling so crummy - but I sure don't blame you - what a lot to deal with. I wasn't clear from your post - you said
"I only have mets deep in the back of my neck, very small, but they have not really changed since last scans. Everything else is gone!"

Does this mean that you had more mets visible and they are gone all but the very small ones which are stable? Since you had a CT, not a PET scan, could the remaining mets be necrosis or scar tissue?

Tough decision, it sounds like the Navelbine is working - and if it were me, I'd be afraid to get off the winning horse, too. On the other hand, giving your body (and soul) some time to recover its strength sounds like it would also help.

Why not talk it over with your oncologist - do you know for sure he/she would be so adamant you continue for 2 more cycles when you feel so crummy? Maybe not!

Good luck with your decision...
Hugs,
chris

dede10 · 10-10-2006, 12:00 PM

Went to see doc, today, & I couldn't take chemo anyway! My counts were still too low after 2 weeks! Anyway, I am going to go ahead & do 2 more rounds & see what my next scan shows. I didn't want to cut myself short & need to do chemo again too soon. Also, Only 2 more rounds, so there is an end to this...at least til next time. Maybe I will be in remission for a long time, and won't have to take chemo.....I do know that I'll be living from scan to scan, but on herceptin, only.

MJo · 10-10-2006, 01:48 PM

If your counts were too low to take chemo today, you are getting a short break. I am glad for you. I got very very sick with Adriamycin and didn't finish -- took 3 instead of four. But after recovering I was able to go on to Taxol. I hope you can finish your last two chemos, since the doctor is urging you. But a short break won't hurt. That mean little chemo keeps working. All the very best MJO

dede10 · 10-10-2006, 01:57 PM

I need this break, & a longer one, which is what I'm working on.