Need Help- elevated ca-27-29

[PattyD]

I need some advice. For the last 3 mo my CA 27029 has been going up from 50 to 89- Mu onc ants to do a PET scan as well as brain MR. Brief hx incldes dx of breast ca mets to lungs in Jan 2003- treated sucessfully with 4 months of taxotere. Then dxd of mets to brain (6 tumors all under 1 cm)treated with WBR and followed by Cyberknife- results were4 destroyed and 2 remaining but shrunk some. I dont know how much the PET will show vs CT. Can anyone tell me more about this? My onc is saying there are a couple of drugs- navelbine and something else beginning with a G-he is going to pull me off the herceptin and told me if the PET scan is negative then we will have to just follow the tumor markers and decide if any type of chemo is worth pursuing. My take on this is that he feels since the markers keep rising-the end is near and the chemo really isnt going to help and I will have to decide to do it or just take what time I have and try to maintain the best quality of life.
Please ladies I need advise from you. I have remained as positive as I can but it is very hard right now to see any light. I will have my scan on Friday but wont have the results til Monday at which time I will know more and will have to decide what to do. I want to give myself every chance I can (I owe this to myself and my family) but I dont want to make myself so sick with chemo tx that may not even work. Would it really be worth it.
Thanks for listening and I hope to hear from someone. God Bless

[Kristen]

Dear Patty,
My gosh, I can't even imagine an onc saying that. I think I would be in someones face in no time. Tell him you are a fighter and if he won't do something, then go some place else.

I don't know how you are feeling, (physically) from the post, I know scared and wanting to fight. So fight, fight, fight. How many times have we heard from this board, that they have beaten the odds. Tons. Too many are not suppose to be here and they ARE!! Thank God!

Patty, I don't know what all the drugs will do to you, but if your feeling up for it, go, if at sometime you think it's to much than you can always make your decision then. And why do they always schedule tests on FRIday? Do they not know what kind of hell they are putting you through?

Patti, I hope I wasn't out of line. I will pray for you that the decision will come to you and you will feel comforted. I just hate it when I hear some doctor talking like that. I just can't go there. God Bless you. K

[Patty H]

I'm glad to here from you. You and Patty Z were both on this site when I started and I watched you both go through brain mets which is so scary but you guys did it so well that it has really made me see that nothing here is a death threat. I have not had brain mets but I have lung and bone mets. Navelbine has worked this time and the side effects have been so mild. Most people don't even know I am stage 4. The pet scan will show if there are mets any other place in your body. I have only had one but I have heard only good about it. Most people do recomend the MRI for brain though. You made it through brain mets so if your Dr. puts you on navelbine it will be a piece of cake after what you have already been through. I know I always get nervous waiting for test results. My prayers of peace of mind are going out to you. Patty H

[al from canada]

Patty,
If you are HER2 ++ and he wants to take you off herceptine, I would make sure he has a damn good reason. I don't know your history nor your onc however, it sounds like he is at an impass with your treatment. Ask him to do the right thing and refer you to an oncologist who is: a) more experienced, b) someone who cares or c) someone willing to review your case and possibly shed some new light.
One thing I have learned: "If the red light goes off, don't wait to see if it changes color"!!
Take care,
Al

[lu ann]

If you can't find another local oncologist, call Cancer Treatment Centers of America. Their counselors will take your insurance info. and let you know if you are covered. Most plans are. They will provide transportation and meals for you and a guest. There is reasonable lodging with free shuttle service to the hospital. My husband and I arrived on a Monday and they had a treatment plan for us by Thursday. I went there for a second opinion and stayed for 6 weeks, had a biopsy of my other breast (benign), and 22 radiation tx. to my chest and spine. I talked to so many people that were given no hope from their docs at home. I met many survivors. Don't give up the fight yet. I was dx. stage 4 last Feb. and I really didn't think I would be here today. I decided to have my chemo here at a local provider, but If I need more rad. tx. I would seriously think about going back. They have one of six tomotherapy radiation units that can pin-point tx. so well that it can be used on patients that have had their max of radiation treatment. Even if you don't want to go, let them send you their kit of information. The place is amazing.

Take care and God Bless you. Love, Lu Ann.

[anonymous]

Patty!


The end is NOT near! If you have a doc who wants to give up and you aren't ready to give up, time to find another doc. Also, even if you are progressing on herceptin, it doesn't mean you should come off herceptin. The way it was explained to me is that herceptin can still slow the pace of progression.

The G drug is gemzar. I have been on it for 9 months and it has done wonders for me. I too had a doc who wanted to give up so I switched docs.

I know it is scary. We all know this and wait with anxiety when tests are done but you still have many options left. ( doxil, navelbine, gemzar, alimta, xeloda and clinical trials. )

Hang in there and know that there are still options if you wish to continue.

Hugs

[Jackie]

Hi Patty,

I was so surprised by your post that I had to reread it! Is there any chance that your onc just thinks that you should hold off on chemo until a metasteses can actually be found in your body (besides the brain)? Before recurrence, I had a Pet scan when my Ca27/29 became slightly elevated, nothing showed up and I didn't begin treatment until it did. Since then I have had disease progression while on herceptin but my onc believes that it helps the chemo drug do a better job. If you are her2+, you should continute with your herceptin! The bottom line is that you have many drug options to help you and there is no reason for a negative outlook! If your onc isn't positive and supportive of your fight, by all means find another who is. This website is proof that women can live for many many years with metastatic b/c, and you can too!!
Lots of love,
jackie

[Lolly]

Patty, I'm just adding my ditto. I don't see why your onc wants to take you off Herceptin, even if the PET is positive Herceptin has been proven to enhance the effects of many chemo's. When I progressed while on maintenance Herceptin this spring my onc added Navelbine for 6 months and we beat it back again...if the brain mets remain stable you really can feel hopeful you haven't reached the end of your options...hang in there and when you get your reports in let us know and especially what your onc proposes, we will help you sort this out.

Love, Lolly