Topic: Another set back

Well more bad news this week or at least a set back. I had posted that my one year scan post resection now showed a 2cm tumor in my liver and spots in both lungs. Had a clear scan a little over 3 months before that. Given 3 choices, do nothing and scan in 2 months, take one of chemo drugs I was on before, or go back on both. I opted to go back on both (Gemcitabine/Xeloda)to really fight this demon. I had my first round a week ago Monday. Went back this Monday and got pulled into a room and told the Dr would need to talk to me. Never had this happen before. Well, my WBC and neutrophils were really low, lower than they had ever been even after 7 months of straight treatments. I havent been on chemo for 9 months. He now has me off all chemo this week and next week I will get Gemcitabine if counts are better but will not put me back on the Xeloda. The day after the chemo I will get a shot of Newlasta. We'll have to see how that works to determine next step. If it helps, then he says I'll get Gemcitabine once a week for 3 weeks like I used to, but no Xeloda, and the 2-4th days after chemo I'll give myself injections of Neuporgen (sp?). I am really mad that my body isn't doing what it needs to. I hate not being able to take the chemo that worked before. On the other hand, this week I really got my fight back. I hadn't talked to the Dr since we got scan results. I felt that he was maybe writing me off somewhat. Well, after he told me about blood work and his plan I decided to speak up. I told him that I had heard of other patients with cc with mets to lungs that still were around and that had even had radiation for liver tumors, etc. I said that I want to treat this aggresively and not to write me off. That I know he rolls his eyes when I talk about beating this, but that even if it is unlikely, improbable or unrealistic that I believe that it is not impossible. All things are possible with God and that is what guides me. I was surprised that he said he was sorry if I ever felt that he was "rolling his eyes". That all options are still on the table for me (not what I thought I heard the last visit) but that he was just looking at the first choice option and not looking beyond that until needed. So I felt better about that but still bummed that I can't tolerate our first choice. I guess I just have to change my armor to go into this battle now. Sorry I'm long winded. I just needed to share what's going on and get your opinions about current option. Thanks a bunch guys for being here. You'll never know how much you and this site mean to me.
God Bless,
Jamie

Re: Another set back

I COMPLETELY understand being disappointed in your body. I have not been on schedule since day 1. In my case, my liver acts up or I get so dehydrated I end up in the hospital. It is so frustrating when you want to be a warrior and your body wants something else.

Perhaps you can get back on Xeloda when your body settles down. Did he rule out radiation? Several people have had radiation to the lungs for pallative reasons and it killed the tumor. I dont understand why doctors wait till its pallative to radiate the little suckers.

I sometimes wonder about doctors. Most of the chemos and drugs given for cc were developed in the last 10 years. Developments are coming. As I told my friends and family, I might be terminal now, but that doesnt mean I am terminal in 5 years. I just have to hang around until new things come. My husband and I like to say there is a big difference in 3 months and 3 years and that difference is worth fighting for. Why dont doctors always get it?

Anyway, have you asked about adding a different chemo instead of Xeloda...oxilaplatin or another one or how about Avastan? There are so many options now. I know it is disappointing, but now we just have to develop another plan of action for the future when your body can handle it.

Take care.
Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Another set back

Jamie, sorry about your body having a mind of it's own, but you GO girl! I still am a firm believe that if you are not satisfied with what your doctor is saying....just get other opinions. I don't like when doctors roll their eyes. The Urologist that Teddy went to was an eye roller. I did the best thing ever by switching doctors. He was giving up on the ureter damaged by the cancer, and the new guy says ,"oh its not as bad as I thought it was going to be, we can work with this". Listen to your gut feelings. I can see you now putting on those rose colored boxing gloves with the sequined robe!!! You go girl. You know we are all sending you our best thoughts.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Another set back

I hear ya, Jamie.  If we are going to fight, we need doctors to fight along side with us. 

I have a scan/chemo/dr visit next week and as always I'm a little nervous about the results. 

To be honest, I want to fight, but the fight is wearing me out.

Re: Another set back

Lisa, take some big deep breaths because I know you are a fighter.  Just remember you need to be around to buy that next washer and dryer  when these wear out! smile:)

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Another set back

Thanks for your replies. You always make me feel better!

Kris,
I totally agree about being around when the next discovery is made. Who knows, maybe a cure is about to be discovered. The longer I'm here the better chances something new will be discovered.
I did ask about other chemo drugs, mentioned the new standard combo from here. At this point he just wants to get the Gemcitabine in and tolerated I guess. My white counts have never gone back to normal even after being off all chemo for 9 months so I think that is why his caution. I am calling another Dr today to get another opinion though.

Lainy,
You always put a smile on my face, and we all know how much that helps! Still praying for good news next week for Teddy's PET results.

Lisa,
You are a warrior! You have 3 very important reasons to fight, plus a bunch of 4 legged ones. I know what you mean about the fight wearing out. It's like being hit by a truck not just once, but over and over. In my darker moments, I give in to predictions and statistics.... but then I kick myself in the butt, or something or someone else does, or reminds me that I am needed here. So I get ready for battle again. Now, thanks to Lainy I have a new vision of myself with a sequined robe and rose colored boxing gloves! Lisa, you need to put them on also. I'll loan you mine or maybe you want your own color smile   I'm gonna says extra prayers for you for strength until next weeks scan and for good results.

God Bless you all,
Jamie