VERY bad news.

So my CT/PET from yesterday has a second recurrence with a new 1.8 X 2.1 centimeter tumor on my transverse colon. It's the same place it formed last Feb. Also, the PET lit up and showed activity in my intestines although it's ambiguous. This means I've recurred twice within six and half months. VERY bad. The surgeon is meeting with his tumor board next week to decide what to do. I've requested at least the chance for a needle biopsy so i can do a functional profile assay test. It seems all of my proactive activity is useless, 40 supplements a day, Iscador, Metformin, aspirin. None of it seems to have made a difference although I don't know if it'd be worse if I didn't do those things. At a minimum, it means third line chemo, six plus cycles of something, as yet to be determined. I wonder how many lines of chemo are available? At what point do they say there are no more options? When do they say to get your affairs "in order?" It's GRIM and I know it. I feel fine, everyone says I look great, but the reality is now quite different. Will I make it to next year? Best to all.

By X-raygirl
Reply 3708284
January 15, 2013 at 3:09 pm
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I'm so sorry you are dealing with this. It is so easy to worry. I'm in my first recurrence but I feel good so I'm delaying chemo for now.
I just try to stay busy cause it helps me to refocus. Wish I had more to say.

By ImBeatingIt
Reply 3708312
January 15, 2013 at 3:20 pm
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Darn! Was your primary mucinous by any chance? If so, has anyone talked about FOLFOX or FOLFOLI? It seems to be promising since mucinous is so similar to colon cancer, and these problems are t. colon.

Godspeed.

By Rabbitgal (Inactive)
Reply 3708329
January 15, 2013 at 3:24 pm
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Ah, I was hoping the CT wouldn't show anything! So sorry.

I'm sure the supplements helped. But the unfortunate truth is that cancer figures a way to get around things. I mean we can't even get rid of it with chemo poisons, its very difficult to get rid of it with spices and vitamins. Being flip is not what I intended. After my first recurrence I did a bunch of stuff and still recurred. Now, I'm doing more stuff in an effort to stave it off again. Who knows? All any of us can do is keep going. That includes you. You are still alive and feel okay so you will have to fight back again.

I'm 52, in remission, and I have all my affairs in order. Anything important to you should be taken care of. Not to scare you. But honestly, I would recommend to anyone over the age of 40 to get their affairs in order because we have statistics that say people are more likely to die the older they get no matter what their health level. Just do it. Don't wait. I sleep way better at night knowing I have things that are important to me taken care of. I also have the advanced directives because I wouldn't want to be on life support indeterminately. These are icky topics but I think our society should start teaching people to think about it even when they are young and healthy so it is attended to.

Remember some women repeat effective chemos and have them work again. There are actually a fair number of agents out there they can try so keep hopeful, determined and try to get to remission again. Maybe whatever they use this time will do more to wipe those cells off your colon. I'll hope for the best for you.

By Mimi25
Reply 3708459
January 15, 2013 at 4:08 pm
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Dearest Xanthic....
PLEASE don't panic....keep your stress under control....and know that you still have a very good chance of beating this thing back....again and again. I had very aggressive BR CA (w/8 positive lymph nodes) 25 years ago and was given less than 5 yrs....guess who is still hanging around. I'm now 73 and, just before Thanksgiving, started treatment for my 4th recurrence of this present cancer. I've had two assays (before I knew of Nagourney or Weisenthal). The 2nd one showed that I was resistant to EVERYTHING they tested! However, it was 50/50 for the combo of Gemzar/Carbo and about the same for Taxol alone. The Caris assay wasn't that helpful but it did show that I had a slight % of VEGF....I didn't have any of the other markers/targets tested but did have a few of the very bad ones as far as prognosis....that was 3 1/2 yrs ago...(I'm 6 yrs from first surgery).
My doc didn't think my chances were at all good and I proceeded to get my affairs in order (which is always a good idea). The Gemzar/Carbo with added Avastin (because of the VEGF) gave me NED and continuing maintenance w/Avastin kept me that way for 18 months. I only recurred when the doc tried to reduce my dose of Avastin, in preparation to taking me off of it. He immediately restarted my Avastin and followed my request to retry the G/C/A combo. I did show NED and remained on the Avastin, but this time I recurred quite quickly although scans were actually not too bad. I had had a 6 month battle with diarrhea and my platelets were not responding as well as before, so I chose to wait and let my body get stronger. After spending the summer healing and accomplishing many fun/good things (travel with our grandchildren, etc), my next PET scan showed a lot of build up in the peritoneal implants (we knew they were there but they had never shown up on a scan before). As I objected to Taxol because of problems with it the first time with the carbo (and recurrence within 9 months), he has now put me on weekly Taxotere with the Avastin. We still don't know for sure if it is working, but I have high hopes. Also, I keep thinking of all the things there are in the pipeline. You may qualify for one of the many interesting clinical trials out there (unfortunately, I can't qualify). Two of the ones I like are the one combining Avastin w/Zybrestat and the new one Rosetta just posted about using a PD-1 antibody. Also, the PARP and mTOR inhibitors with other drugs. You are only in your 2nd recurrence, so you should be able to qualify for trials. You know that you will have a lot of people rooting for you on this site and giving you the support you need. Take a deep breath (good to take in lots of oxygen), keep up the other good things you are doing for your body, pray (if you are so inclined) or meditate and take the next step. We are with you.
Love, Mimi

By J-out-West
Reply 3708611
January 15, 2013 at 4:57 pm
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I recall learning at the Survivors Course that are at least 11 lines of chemo available, plus more in trial including vaccines. Don't even think about giving up. Way too early! I know this is devastating news, but you will regroup and spring into action. Good time to get a 2nd, 3rd, .. opinion. Hugs and best wishes. Let us know what the doctor recommends.

P.S. You might want to change this message to shared with members rather than public to get more responses.

By HoldingHerClose
Reply 3708715
January 15, 2013 at 5:31 pm
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I'm very sorry to hear your news, xanthic....It must feel like a real blow.

Keep your spirits up as best you can, and - as the other ladies are saying - never give up!

Its good that you are keeping your body as healthy as possible - it can't hurt, and may well be helping. If you're not already doing so, perhaps eliminate all processed sugar (feeds cancer), and reduce your Carb intake to minimal. Again, may help, and won't hurt you.

Above all, stay as positive as you can...

.

By TheresaM1
Reply 3708990
January 15, 2013 at 7:07 pm
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I'm sure your oncologist has another plan. Go with it!

I just read about a woman with stage 4 ovca and she's been fighting for ten years. On and off... Recurrences... But she's living and looks great.

I keep saying this on this site, but I believe it: Where there's life, there's hope.

By Borderline3
Reply 3709042
January 15, 2013 at 7:24 pm
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I hope the tumor board will come up with some good recommendations for you! There are a bunch of chemotherapies available, and it seems to me the trials we've been hearing about should make more of the targeted compounds available before too long. I've been trying to digest the change in my gyn/onc's strategies over time. I guess I thought we were going for a jog in the park and then it turned into a 10k event, and now I reckon it's a marathon. It's like packing a suitcase for a weekend jaunt and then staying gone three years -- not what I planned, but I guess I can pick up what I need along the way. Hang in there.

By 3978bee
Reply 3709479
January 15, 2013 at 9:54 pm
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Oh my friend. I am so sorry. I've been in recurrance since April 2011. It's never good news but it doesn't necessarilymean a quick ending. You know of women on this site who have had more than two recurrances and are still around to talk about it. You know I cannot have any more chemo and Tamoxifen has brought my CA125s down from 1054 to 522. Same thing happened with Supergirl. You just keep on taking good care of yourself and know that you are surrounded by love and prayer. Let us know what your team comes up with. And try to keep the anxiety under control.

By barbie115
Reply 3709988
January 16, 2013 at 5:06 am
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Teal hugs to you. Remember, the best medicine is your resolve. Make up your mind not to lose this battle or this war and you will win.

By chrystynh
Reply 3710010
January 16, 2013 at 5:51 am
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I am so sorry. But all is not lost. A couple of points occur to me. One is that forty supplements may be way too many. There could very well be interactions between the supplements that negates the benefit. I would reduce them to iscador, metformin, an omega 3, curcumin and perhaps inositol or something else to support your immune system. The second point is that recently I heard the story of a lady who had responded extremely well to NSAIDs. Initially she was prescribed diclophenac for something else, then she continued to take ibuprofen (400 mgms three times daily). Her first remission was six months. She has now been in a second remission for nearly two years. There are several studies that show that NSAIDs can help but the studies haven't been followed up, perhaps because of commercial reasons.
There is still hope. Please keep trying. I wish you all the best. Cx

By lowlandscot
Reply 3710120
January 16, 2013 at 7:32 am
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I have been lucky enough not to recur so far. Dx 8/10.
Don't give up, fight hard. You have been so brave, all of us here have benefitted from you sharing your experience. We all need each other, we need to fight for each other. You are in my thoughts and prayers. Good luck fellow warrior!

Shannon

By HeartsToYou
Reply 3710147
January 16, 2013 at 7:47 am
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Me too- sorry.
I don't know what you've had so far but there must be more that you
can try in the way of drugs but you can also try this:
Every night before you go to sleep ask God to send His doctors to
come and scrape and clean and heal your insides. Do you think all the
doctors that have "passed on" are just sitting around in Heaven twiddling
their thumbs? NO. They're helping us if it be God's Will....but you have
to ask. I know it sounds too simple. Sounds a lot more simple than stopping
sugar and white flour, but it works!
Blessings
Hearts

By kcingalls
Reply 3710220
January 16, 2013 at 8:22 am
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You are in my prayers! And, I agree with the other writers...do not give up. And like anyone, cancer or not, we need to live each moment to its fullest.
God bless you.

By bookepr
Reply 3710247
January 16, 2013 at 8:30 am
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You are living my (and everyone here's) worst nightmare. Please don't give up. Just as you learned you initially had cancer, you will adjust to this news and keep fighting. Because there's too much living that hasn't been done yet.

Don't ever forget that.

Hugs,
Sue

By jslachetka
Reply 3710291
January 16, 2013 at 8:48 am
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I will be thinking of you!!!! Stay positive as I have found that that always helps! Each time we learn something new and learn once again how many really really special people there are in the world!

By Laurel-J
Reply 3710643
January 16, 2013 at 10:35 am
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It may help to seek a second opinion. There are many treatments available. I hope you learn what the "plan" is for going forward very soon. I think many of us have been in that same dilemma waiting to hear what's next. Hope you keep us posted and hope to hear some great news from you in about 6 months after you're working your way through this next regimen.

Laurel

By Jafer
Reply 3710833
January 16, 2013 at 11:28 am
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I am so sorry, but like the others, I urge you to keep seeking answers. Do you take someone with you when you go to your appointments? I ask this because 1) I don't hear well and 2) when I'm stressed, I REALLY don't hear well. If the other person will take notes that you can sort through later, that is helpful. It took me awhile, but I finally learned how to get a doctor to sit still long enough to listen to my questions and concerns instead of the usual WHAM, BAM, THANK YOU MA'AM treatment. I am a great believer in prayer, so I'm sending one up for you now. Blessings, Jane

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