Another Roller-coaster ride

[Linda in MI.]

Hi Ladies,

Just when I thought I had finally turned the corner and could see some light at the end of the tunnel I have been hit with another roadblock!! I got my ct. scan results on Monday and there are not any lung tumors but now I have multiple liver mets. I also have possible lymphangitic mets in the lungs but my oncologist said that can be reversed.

This news hit me so hard. I have been on oxygen for 3 months now and have been getting fluid drained from a catheter by a nurse that comes to my house every 2 days and things were just starting to look better......now this. My fluid has decreased from 1,000 cc (1 liter)to 450 cc. But, I'm still having shortness of breath which according to my nurse could just be from my lungs becoming desensitized to the amount of the fluid and now has to adjust, expand, etc. which takes some time. Of course it could also be from the lymph. spread.

I have been on navalbine and herceptin for the past two months and prior to that was on taxotere/carbo/herceptin for 7 months which knoocked out my lung mets but then 3 weeks later I had pleural effusions. I had the lung talc surgery on my left lung and am now draining the right with the catheter. I read it's unusual to have it on both sides....lucky me!!

I'm waiting to see if I can get into that GSW#### trial (her1). My onc. seems optimistic about it and is telling me he WILL find something to make me better. AMEN to that...I don't know how much more I can take.

I"M NOT GIVING UP!!! But, sometimes I feel paralyzed with fear. I hope this trial is going to do the trick for me. I'm a little scared though not being on any chemo. Of course no harsh side effects sounds great to me but I want the cancer knocked out too.

By the way, I asked about the RFA for the liver but my onc said since I have multiple spots it can't be done right now.

I really need everyone's prayers right now and if you have any advice for me that would help too. I know I can always count on my wonderful sisters!!

Blessings and Hugs,

Linda in MI.

[Pattie]

Dear Linda, I don't know if you remember me, but we had corresponded several times about your lung mets and the talcing procedure. Anyway, I just wanted to tell you that you are in my prayers and I am so sorry that you are having such a tough time. If you need someone to talk to please don't hesittate to e-mail me. Hope things get better real soon for you. Love, Pattie

[rosie]

Dear Linda

Your story sounds a lot like mine but sort of in reverse. I was on the GW drug for 4 months last year when they couldn't sort out what was going on in my lung after several biopsies. It did hold things but only for 3 months then I went downhill very very quicky including pleural effusions and a big effusion around my heart compressing it to the point that I couldn't stand up.

I tried navelbine but it did not work and everyone was saying I had just a couple of months left. I switched oncologists who said single therapy was not enough for such aggressive disease and he put me on a combo of gemzar and xeloda. The first couple of cycles were rough. I was very very ill but it has gotten much better.

I too have been on oxygen since January but there are times now when I can be off it for up to an hour! My breathing has dramatically improved. If you have specific questions about my whole pulmonary regimen, send me your e mail address and I will answer back.

I guess what I am saying is that 3 months ago, I was giving away my jewelry, my good clothes, writing good bye letters, stuck at home. Now I am sorry I gave away the good clothes, somedays I can drive, I have really cut back on the oxygen and will be able to tell my pulmonary guy that his prediction of June for the end is wrong!!!

You hang in there!!! The liver mets can be treated with the same combo as the lung mets.

Hugs,
Rosie

[Steph N]

Dear Linda -
Been following your posts for the past few months. Was really hoping you were coming out of the treatment tunnel.
I am a survivor of major liver mets. I too was given a bad outlook for survival, but have knocked out my tumors and am clear for nearly two years. No lung complications for me, but there was a lot of disease to deal with.
Milk Thistle (standardized) is good fro liver cleansing. I also ate a lot of Shiitake (organic) mushrooms which have good anticancer properties. Drink a lot of good quality "detox" teas. Avoid as much as possible all foods grown with pesticides, herbicides, etc. Also, avoid meats and dairy that have been treated with growth hormones and antibiotics. This is what I did, in addition to my taxol, navelbine and herceptin weekly treatments.
I hope and pray that you can help your body along with these suggestions. Just think "taking the toxic load off" when you shop and eat.
Taking charge in some small way really helped me to stay positive in the face of my very bad news.

[cathyB]

Rosie - just came from an appointment with a pulmonary doctor and am glad he is not my onc. I would be very interested in your pulmonary regimen as I too suffer from sob & pleural effusion-the cause of which is unknown at this point. I had it drained once but it came back in a day or two but contained no malig. cells. Now he has ordered a CT scan of something he thinks is suspicious but my onc never mentioned anything suspicious. So any info you can share would be greatly appreciated. It is good to hear you are feeling more comfortable now and hope you continue to improve. Cheers!!!!! PS - my email is cath08@aol.com.

[janelle]

Linda,
I too was diagnosed w/liver mets (Mar 03).. too many to count. But thanks to Herceptin, my last CT did not recognize any tumors. Be positive and never, never give up.

Will keep you in my prayers....
Your Michigan buddy, Janelle

[Sherry in WV]

I know what you mean...after a long layoff, I too was told that tumors are growing in liver again. Then, Xeloda knocked me off my feet. Hang in there, that is what I keep telling myself! I don't know which is worse, diappointment or chemo or all factors involved. Stay positive, no matter how hard and know we are all out here supporting you.
Love n Peace,
Sherry in WV

[Sue C]

Definitely sending my prayers. I hope to hear better news from you soon.

[Lolly]

Dear Linda,
I'm so sorry to hear about this, I know you were looking forward to turning the corner and now it seems like you're in for another round of chemo. I'll be keepint you in my thoughts and prayers, and if I come across any internet info that seems helpful I'll be sure and post it for you. Take care of yourself, and keep us posted.
Love, Lolly