Feeling down about scan results

[aussielones]

Well....the Soup Nazi oncologist strikes again....

'NO SURGERY FOR YOU'...if ever.

I had my CT scan yesterday, after a horrendus day the day before trying to get a vein (after about 4 goes and a blow out in the vein, I said 'Look, I'll come back tomorrow and try again').

The results show that after 8 treatments of FOLFIRI and Avastin that my colon tumor has shrunk a little bit (less bulky and less ulcerated according to the report), one liver met has slightly shrunk and also a lymph node has slightly shrunk. However the other 3 liver mets and the two other lympth nodes are stable and unchanged. I know from looking at the board topics in the past that shrinkage and stability is good, but I just want it to shrink so that I can have surgery and GET RID OF THE BLOODY STUFF!!!

Have had some rectal bleeding (how FUN!) so also got to see a surgical fellow, Tim the Lovely Scottish Surgeon Man who took a look and I have a fissure from constipation. I was freaking out as thought may have been a tumor but it's not. He was really nice, and I found out that the surgeons haven't even reviewed my case since I started treatment, so Tim the Lovely Scottish Surgeon Man is going to get them to have a look at it.

Oncologist is talking doing the four remaining cycles of FOLFIRI, then going onto Xelodia and Avastin only....for as long as I can tolerate it. I guess I'm tolerating the chemo ok, have only really had fatigue as a side effect and mouth ulcers. So we will see. But the idea of chemo for life.....gah.

Just so depressed...just needed to vent today. I HATE CANCER!!!!

[Kathleen808]

ilona,
I understand you wanting to see more shrinkage and for all the cancer to go away. I know the scan is not what you wanted to hear but it is better than it could have been. Shrinking and stable are good. I hope you have a better day tomorrow.

Thinking of you.

Aloha,
Kathleen

[Liz2011]

Hi Ilona,
Sorry to hear you didn't get the news you were expecting, but don't forget - NO progress of the cancer, so we're heading in the right direction! I don't know how hard this is to be going through as a patient, but I know how hard it is to remain positive as a carer when you feel that everything is going against you, and things don't go as you wish... But shrinkage, even if small, is GOOD news, and the new chemo might do wonders, so please try and keep your spirits up!
Also you often hear of a doctor ruling surgery out whilst another wouldn't. Also no one knows how things will evolve so they can never say never!

I am feeling really strongly about this as you are in a very similar situation to my mum, for whom surgery is 'impossible' given the extent of the liver and LN involvement. The problem is that unlike you mum is really struggling with Folfiri (on round 3) and has been vomiting loads this time (she's on day 4) and getting really strong headaches, and I am getting very worried that she's gong to end up in hospital, and unable to carry on with the chemo... Whenever she tries to take some meds she throws them up at the minute

Anyway - I have been looking at your file for a while (makes me sound like a voyeur now!!!) and my heart goes out to you for what you're going through.
I actually live in the UK so can send you local news if you want (although I live in the depths of Hampshire, so not much happening in our village! lived in London for 15 years though...

Liz x

[SkiFletch]

Hey Ilona, sucks that your not a surgical candidate, but stability is better than the other alternative. Any chance that Oxaliplatin is available "downunder"?

[clarabelle64]

Dear Illona
I'm sorry you didn't get better news....but stable is excellent!!! Really, stable means no progression, no extra tumours, no increase in size of existing tumours....I love stable!!! Keep your chin up Illona....
Clarabelle NZ

[xharryx]

prayers coming your way that you have great news in the future

[catta]

Hey Ilona, sucks that your a surgical candidate, but stability is better than the other alternative. Any chance that Oxaliplatin is available "downunder"?

Im in Melbourne, Australia.. and dad had 12 rounds of Folfox originally, so the Oxi is definately available here..i thought that was always the first line of chemo..

[CRguy]

I know from looking at the board topics in the past that shrinkage and stability is good, but I just want it to shrink so that I can have surgery and GET RID OF THE BLOODY STUFF!!! I HATE CANCER!!!!

Stable and shrinkage...is GOOD
Hating Cancer is Good too.

Sending you Cheers and g'days !
Staying strong on the Journey
CRguy

[mjkelley]

My first scan was after 4 treatments, my CEA had dropped dramatically but there was NO change in my scan. Onc thought it didnt make sense, so few months later we did a pet scan, but that was hard to compare to anything, then a few months after that we did another scan and finally some shrinkage showed. He thought maybe I could have surgery for my primary, but the rest of the oncology/surgical team decided it was too risky to take me off chemo due to amount of mets in my liver.

I had to talk my self into good news each time. No change was better than growth, and some shrinkage is good, even though surgery isn't an option.

Will have another scan in a month or so and am hoping for some REAL good news on that one!

Hang in there, next time you could see better results.

Mary Jane

[Becky2011]

I'm not a surgical candidate either. Can be very depressing, especially when your CEA has gone way down and scans show the mets are shrinking. Unfortunately it doesn't change the location of the mets, which in my case is right on top of major blood vessels which is why I can't have surgery. However, I am a candidate for those little magic beads that they can put inside the tumors and burn those suckers out. My liver may end up looking like swiss cheese according to the Onc but it is a good option for non-surgical candidates like me. Check with your Onc about your other options. We are trying to shrink the tumors as much as possible first, if not get rid of some altogether, then take a break from chemo and avastin before we do the next step. May have to do a course of Folfiri first though if the Folfox/Avastin hasn't shrunk the mets enough first. Saying a prayer for you. Each day we are here is a battle won against cancer.

[aussielones]

Anyway - I have been looking at your file for a while (makes me sound like a voyeur now!!!) and my heart goes out to you for what you're going through.
I actually live in the UK so can send you local news if you want (although I live in the depths of Hampshire, so not much happening in our village! lived in London for 15 years though...

Liz x[/quote]

Hello to you in Hampshire! I miss the UK! I'm sort of glad I missed winter....I'm hoping to get back in July for a few weeks

[aussielones]

I'm seeing another oncologist next month...hopefully this one might be a bit more aggressive in their approach.

When I was first diagnosed I was offered a choice of treatments including FOLFOX, how hard to pick one! I had no idea. I asked the onc which one he'd pick if HE had cancer, and he chose the FOLFIRI with Avastin.

I wonder if you can do FOLFOX after FOLFIRI? I still have four more FOLFIRI to go, then another scan, so fingers crossed this next scan will show even more shrinkage. I was taking a selenium supplement with added Vitamin A, C and E which I've now stopped...just in case that had anything to do with it not shrinking as much. I also do meditation and reiki which I find really helpful.

In terms of a break, apparentley if you go off Avastin and the tumors start growing again, you can't get Avastin on the PBS anymore...how crap is that!?

As far as I'm aware Cyberknife is not here in Australia yet, but I'm thinking I might ask about SIRT spheres.

Yes I know I should be happy with these results...but I am so not a patient person. I want them OUT OUT OUT!! Damned spot.

I'm still feeling well though, still going for runs, and trying to enjoy life. I went out after my doc appoinment and straight to a wine bar and had two wines. Give Larry Liver something to REALLY think about. Then chased it with a massive chocolate mousse.

[Bev G]

Hi Ilona:

I'll echo the others who have said that it does indeed suck that you're not yet a surgical candidate, but it DOESN'T mean you won't ever be. I had sort of the opposite problem in that my liver surgeon wanted to go get my liver met about a month after my colon resection and the Tumor Board said NO WAY. I had three rounds before the liver resection (they wanted 6 but I couldn't tolerate more). Have just finished my "mop-up chem a year later, and had to stop at 10 because I'm a chemo wuss.

You can indeed take FOLFOX after FOLFIRI. Also, at least here, you can talk to different surgeons, although I'm not saying I think you should do that right now. I know for a fact that many surgeons would not have touched my liver tumor because of its location (1 mm from vena cava in posterior caudate lobe, "may have been, but wan't, growing into vena cava). Chemo totally sucks, but try to hang in there with it, and see how your surgical candidacy improves over the next few months.

Much love being sent to you, Bev

[aussielones]

Thought I might post an update to this...thanks for all your supportive messages!

I saw a new oncologist yesterday, 8 hour round trip later, I have some good news and some hope!

I am on a chemo break for two weeks, after my last scan I went a bit nutty...and mentally hit a wall. I couldn't go through with my 9th cycle...the thought of chemo for life just kept going over and over in my head. But I think my body needed a break too, and I'm enjoying it. Rode my bike in the early autumn sunshine and felt a lovely breeze on my face. Keeping moving makes me feel like I'm not sick.

My new onc says he is going to get me to do another 12 cycles of FOLFIRI/Avastin after my next 4 cycles are done. He said I can have little breaks now and then if I like, his goal and my goal is to get me to surgery. He also talked about SIR spheres, HIPEC wash and clinical trials. He told me not to give up or to lose hope.

Also one of his receptionists thought I was a medical rep when I walked in! Must be my purty new wig. I wondered why they let me use the staff bathroom when I first walked in. I was holding my black medical folder and I guess she thought I was selling something...

After my appointment she said 'oh my gosh I had no idea you were a patient, I thought you were a rep! you look so well!'

Thanks love!! Kept me smiling the rest of the day.

[wwroam]

I like the attitude of this onc. I was never sure if HIPEC was available down here but you've answered the question for me ( though probably involves travelling to Melbourne). 8 hours round trip sounds grim.
Best wishes
Wayne