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went to the onc today

lisa42's picture
Posts: 3661
Joined: Jul 2008

I saw my oncologist today to discuss my PET scan results (which I had posted on Friday that I got the results for already- new spots on my lungs and one area in my liver).
Anyhow, the visit was good & we discussed all aspects of my situation, treatments, options, etc. Due to the number of widespread nodules of small size in the lungs, surgery or radiation/cyberknife are not options for me right now. As I had anticipated, I'll be starting up the irinotecan again. Rather than continuing the Xeloda along with it, I'm instead going to have the 5FU pump again. As much as I really, really hate the idea of that pump again, I feel it probably is the more sure option to go with of the two. I had been wondering about absorption issues possibly interfering with taking the Xeloda. Since I have had some hand/foot syndrome (all foot, actually- no hand), we know it has been getting in my system. Most people apparently, however, have more problems w/ the hand/foot with the Xeloda than with the 5FU. Since it's been the reverse for me- my hand/foot syndrome and other side effects were far more profound with the 5FU pump than with the Xeloda, he was saying it's a possibility (although there's no for sure way to tell) that maybe I'm not getting the benefit of the drug as well with the Xeloda. He left the decision up to me as to which one to go on. Before deciding, I asked my onc, "Putting my opinions aside, which one would YOU feel better about me being on?" His answer was, "I'd feel more sure that you're getting the full dose if you went on the pump. If we're going to treat this aggressively, I think that would be best." So that decided it for me. My onc did say that if after a while, I really couldn't stand the pump anymore, then we could maybe switch back to Xeloda.

We also discussed options of taking other drugs and we both agreed that as long as irinotecan still works for me, we should continue that avenue rather than try something new with unknown results. I won't be able to have Erbitux or oxalyplatin again, so irinotecan is my last treatment option out of the approved treatments. I know there are clinical trials out there with other things, but I'll keep on w/ the irinotecan until/unless it stops working. One more thing my onc told me about irinotecan is that its toxicity level is lower than some and most patients can stay on it for a long time, with some breaks possible from time to time. I know that I'm at a point where I'll need to keep on taking something forever (unless I receive a miracle & I do believe in miracles! :)

I can do this and I felt very calm and level headed at my appt. today- thank you to so many of you for your prayers. It definitely also helped having gotten my PET results a few days ago, in that I had time to process it all and make my questions list.

Thanks for everyone's support and blessings to all of you-

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

It's such a tough ride!!

Annabelle41415's picture
Posts: 6613
Joined: Feb 2009

I'm so glad that you felt comfortable with your decision on your new treatment program. It is important that you trust your oncologist and can talk about the decisions that need to be made. I'm praying that all goes well with this new treatment.


Sundanceh's picture
Posts: 4408
Joined: Jun 2009

Your case is very interesting indeed. It amazes me how the drugs react differently from person to person...I was the opposite of you...5fu pump was ok for me, and the Xeloda made me pay...for you the opposite.

Oxy busted my immune system up so I don't know if that drug would be in my future again or not...we'll just have to see.

In the back of my mind, I'm always wondering when we fired our last bullet and then it's out of our hands...last year when I was deep into chemo and coming to the end....I made a peace with it and was pretty calm too like you are being now. It's funny how you switch back and forth between OK I'm ready and Oh no let's fight.

I'm trying to stay up with everybody's case and find them all fascinating...sometimes mine don't seem like everybody elses, but after 5 years and counting, I'm still breathing, so it's hard to say.

I'm hoping everything will be ok...we got my liver cleared up, almost 18 mos no cancer there, but the spots on the pleura of my lung finally popped up and it's game on...I've been out of chemo about 8 months...but it looks the ride is over...surgery more than likely...a CT scan in a couple of weeks to compare to the previous will decide my fate. Always something...

Always nice talking with you...I'll be thinking of you and praying for the best.


Posts: 881
Joined: Feb 2007

Hi Lisa. It sounds like you and your onc had a good visit, and your decision on treatment seems based on good evidence. I'll be praying for you and sending "kill cancer" vibes your way! I, too believe in miracles.


tootsie1's picture
Posts: 5056
Joined: Feb 2008


I do hope things go better with the pump than you think. I'll be praying for you!


nudgie's picture
Posts: 1483
Joined: Sep 2006

If I could have only been as level headed as you are when I was DX. It is a lot to take absorb at one sitting with the doctor, but it seems that your Dr really listens and works for the patient. That is always a good sign.

Keep us posted and I am sending good vibes and prayers your way

dixchi's picture
Posts: 438
Joined: Jun 2008

I too admire your level headedness and your spunk and truly
hope that this next treatment will be totally successful.
It does help so much to get those reports and be prepared
instead of being an emotional wreck when we see the docs.


angelsbaby's picture
Posts: 1171
Joined: May 2008

You have a plan now and you go girl.


Fight for my love
Posts: 1530
Joined: Jun 2009

Hi Lisa,it's good to hear that you had a good oncologist vist.It's always good to know which way to go.Best luck to you with the following treatment.

lisa42's picture
Posts: 3661
Joined: Jul 2008

Thanks again, everyone for your input of kind words and encouragement!
I'll get started w/ the new regimen next week Tuesday, which was when I was due to have my usual Avastin infusion.
Have any of you heard of or had a test to see if Avastin will work for you? The other oncologist I consult with, Dr. Fanta, said there's a new test out to see if Avastin will work for you or not. I mentioned it to my regular (new) onc, Dr. Helton, at the appt yesterday and he hadn't heard of it & said he would call Dr. Fanta and ask him about it. Until/unless I have results from that showing it won't work for me, I'll probably continue on it, alongside the irinotecan and 5FU.


Posts: 163
Joined: Apr 2009

Hi Lisa
Serrana here. Looks like you and i are in the same boat.
If you find out there is a test re Avastin let me know; I watch the literature closely and have not read of such, only the KRAS test regarding Erbitux not being effective on mutated KRAS.
I do know that if you have high microsatellite instability that folfiri is better than folfox
an announcement that came out in 2008 along w/ the KRAS erbitux connection. This may be why the folfox didn't keep me from having a lung met.
Anyway lets stay close about this.....I'll email you in the next couple of days. Im having a biopsy on Friday re my new lung spots.
Prayers for complete healing

kristasplace's picture
Posts: 956
Joined: Oct 2007

Hi Lisa! I hate replying ot posts when i'm on heavy drugs, but it seems i'm always on them, and i wanted to let you know how much i'm thinking abou tyou. i'm worried, and i know you don't need to hear that, but please know you are in my thoughts, and my prayers, and i'm trying to keep very positive about how all this will turn out for you. i have a feeling the ironetican will work again, and you will be cancer free!

Many, many hugs,

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