Lousy PET result
Brief recap of my situation: Diagnosed with Stage III rectal 8 years ago. Surgery plus chemo. Three solitary lung mets, all about 2 years apart, all treated with surgery and mop up chemo. Then another NED period. About a year ago I was diagnosed with bone mets (about 5, all small, asymptomatic). I've been on chemo for about 10 months - Xeliri plus Avastin. Seemed to be going well -- one spot disappaered, the rest were shrinking. Then I had two new spots appear - bummer. Treated with radiation (tomotherapy). Which kinda worked.
But my scan this week showed lots of new spots (about 6-7). So, this chemo ain't working no more.
OK -- what's the good news? I have no visceral (organ) involvement. I unexpectedly had no chemo yesterday (yea!). And my onc has a plan. And I'm going to Hawaii on Monday for 8 days holiday!
Tentative plan is after I get back I will have Cyberknife for one spot which is potentially dangerous (L4, near spinal cord). And then a new chemo regime. Probably 6 cycles of FOLFOXFIRI (= FOLFOXIRI) -- 5FU plus oxaliplatin plus CPT-11. (Curious if anyone else has been on this. I've had all these drugs previously, but not all together). Then probably maintenance chemo.
Sigh. I'm disappointed. And a bit scared. But I have a lot of confidence in my oncologist. And in myself! I just have to stay one step ahead and keep the beast at bay....And dance in the waves whenever I can.
Tara
Comments
-
Hi Tara:)
We've never really spoken but I've followed you for a couple of years now:)
I know you are at 4 recurrences, 5 major surgeries and have been battling for 8-years, which has my ultimate respect for you.
I'm right in behind you, weighing in with 3 recurrences, 4 major surgeries and fighting for 7-years.
We're part of about a handful of people in the community, which I call the "Long Term Fighting Group." We're a small team, but fierce and determined and our longevity speaks for itself, especially being in the battle the whole time, with little rest.
I think you are going to be the only one doing this new chemo! Wow, all at once...that's got to be some kind of kicker - one mean cocktail. I'm worried for you in the fact of what that chemo will do to you. I know you are hoping it knocks the cancer down, but I can only hope that your body can tolerate this to make that happen.
You're one tough fighter and the way I see it, you rank #1 on the board as the longest person in the fight - my hats off to you and you've got my complete support.
You're going into new uncharted waters with this new combination chemo....I will be anxiously watching to see how you are doing. You're breaking new ground and I'm very proud of what you are doing. We will learn from you:)
All the best!
-Craig0 -
oh TaraSundanceh said:Hi Tara:)
We've never really spoken but I've followed you for a couple of years now:)
I know you are at 4 recurrences, 5 major surgeries and have been battling for 8-years, which has my ultimate respect for you.
I'm right in behind you, weighing in with 3 recurrences, 4 major surgeries and fighting for 7-years.
We're part of about a handful of people in the community, which I call the "Long Term Fighting Group." We're a small team, but fierce and determined and our longevity speaks for itself, especially being in the battle the whole time, with little rest.
I think you are going to be the only one doing this new chemo! Wow, all at once...that's got to be some kind of kicker - one mean cocktail. I'm worried for you in the fact of what that chemo will do to you. I know you are hoping it knocks the cancer down, but I can only hope that your body can tolerate this to make that happen.
You're one tough fighter and the way I see it, you rank #1 on the board as the longest person in the fight - my hats off to you and you've got my complete support.
You're going into new uncharted waters with this new combination chemo....I will be anxiously watching to see how you are doing. You're breaking new ground and I'm very proud of what you are doing. We will learn from you:)
All the best!
-Craig
ok....not likin this news much....holiday....good
go away....enjoy come back....start over....
I am with Craig....hats off....what a fighter....
so sorry darling girl for crappy news
very best love and a hug
mags0 -
dear Tara
Hi Tara,
Sorry to hear the kicker news with the new mets. Sigh- I hear you- disappointing and scary at the same time. Wow- that chemo combo really will be strong- I guess that is what the onc is hoping for- that it will kick these tumors's butts! I just hope it doesn't kick yours too much. Take this time to really strengthen your body before you come back and start it all. Lots of antioxidants (check w/ your onc first, of course)- but I'd think it would be wise to get your body energetic and strong to take all this on.
ENJOY Hawaii!! How fun- so glad you are getting to go there!
Keep us informed and know that I am praying for you, my dear. You are one strong lady, and I admire you for it!
Hugs,
Lisa0 -
Hi Tara, I am so sorry your
Hi Tara, I am so sorry your news was not good.
From what i have read, you are a heck of a fighter,. So fight on.
Enjoy Hawaii, it is truly Paradise. Savor the time there and come back rested and ready!
Prayers are coming you way.
Judy0 -
Tara
Tara,
Sorry you did not get the results you were hoping for. Cancer is a nasty thing that just keeps hanging on.
I hope your time in Hawaii renews you. Today it is beautiful!! Get in the water a lot and soak up the warmth.
Aloha,
Kathleen0 -
Tara.......your tone and inner and outer strength will serveKathleen808 said:Tara
Tara,
Sorry you did not get the results you were hoping for. Cancer is a nasty thing that just keeps hanging on.
I hope your time in Hawaii renews you. Today it is beautiful!! Get in the water a lot and soak up the warmth.
Aloha,
Kathleen
you very well in your new treatment regimen. First of all, go, and enjoy the islands, forget about all of this. Then upon return look for positive results in this groundbreaking treatment...Strong but powerful. If your Onc didn't think you couldn't handle it you most likely wouldn't be doing it. You are the epitomy of strength...use it to your advantage and see what this will do to expunge the bad cells away for good.......Love to you sweetheart and really enjoy the islands.........buzz0 -
Tara I feel so sorry for your results , I see you are in anBuzzard said:Tara.......your tone and inner and outer strength will serve
you very well in your new treatment regimen. First of all, go, and enjoy the islands, forget about all of this. Then upon return look for positive results in this groundbreaking treatment...Strong but powerful. If your Onc didn't think you couldn't handle it you most likely wouldn't be doing it. You are the epitomy of strength...use it to your advantage and see what this will do to expunge the bad cells away for good.......Love to you sweetheart and really enjoy the islands.........buzz
excellent attitude despite your understandable disappointment,so enjoy your days in the islands . I'm sure this new combo will work it sounds like heavy artillery against the bug!.
Hugs dear friend!.0 -
Tara, what a rough road
Tara, what a rough road you've been on. You inspire me with your courage and confidence. I had folfox before switched to folfiri, so I only know them separately. And man does the folfiri make me tired. And the oxy...ew. Good luck girl!
So happy to hear you get a pre treatment of Hawaii before chemo starts up.
Gail0 -
Tara
I won't add much, I just want you to know, cyber holding your hand in this journey, you got us with you.
Thinking of you, hoping for better news next time!!
Winter Marie0 -
Good luck...
First of all, have a great trip - eat lots of pineapple - its one of those health superfoods...
I have not heard of anyone doing FOLFOXFIRI - sounds interesting to me as I have failed the shorter versions too but it also sounds harsh. Not saying I know anything about the choice - I just know how I felt on FOX and FIRI individually and I am not sure How that would go. Are they going to alternate the OX and FIRI every other or do you get each on every cycle?
Have you explored the possibility of a clinical trial? I am on a phase II that I am tolerating very well (but of course I do not know what effect to expect yet...).
Good luck
Tom0 -
Tara:
Sorry for the crappy scan, it is a real punch in the stomach, we have been there, done that, so we do understand just how disappointed and scared you are feeling about now. George is also in the "long term fighting" group, we are into year 3, never NED, but plugging along, more good days than bad. Never been on the cocktail you will be starting but it sounds like strong stuff and hopefully it will show success for you at your next scan.
Go and enjoy Hawaii, cancer and chemo will be there when you return. I won't tell you to put cancer out of your mind when you are there, that is impossible, just enjoy your holiday and try and put cancer on the back burner even if for just a few days.
Take care - Tina0 -
Both each timekuastoi said:Good luck...
First of all, have a great trip - eat lots of pineapple - its one of those health superfoods...
I have not heard of anyone doing FOLFOXFIRI - sounds interesting to me as I have failed the shorter versions too but it also sounds harsh. Not saying I know anything about the choice - I just know how I felt on FOX and FIRI individually and I am not sure How that would go. Are they going to alternate the OX and FIRI every other or do you get each on every cycle?
Have you explored the possibility of a clinical trial? I am on a phase II that I am tolerating very well (but of course I do not know what effect to expect yet...).
Good luck
Tom
Hi Tom,
My understanding is that they give you both each time.
Clinical trial is another possibility for me. My oncologist is going to do a bit more research/thinking (while I am dancing in the waves in Hawaii!) before we finalize a plan. I'm glad to hear you are tolerating your Phase II trial so well....
Tara0 -
thinking of youtaraHK said:Thanks
Thanks all for the great replies. Brought some tears to my eyes -- but "you lift me up"
Tara
Tara, I have been off the board over wkend, enjoying my grandsons and going to church and resting. I read about your proposed new treatment and first of all sorry about this latest news and set back but YOU will come through it,you are such a fighter. Like everyone before me has said. I can't add much other than I did all 12 rounds of folfox with Avastin a year ago, Avastin only for 9 mos and am now on Folfiri with Avastin after a disappointing attempt at surgery that was stopped due to new cancer that did not show up on a PET... too small. So on a positive note, am glad they found yours and can treat it now. I have never heard, read or talked with anyone who did the combination of Folfox and Folfiri but it sounds like a real potent way to kick the cancer's butt. And I hope it does. Your onc sounds like a very proactive thinker, someone who will push the envelope and that's what we need sometimes. Mine is that way. In fact he asked if I wanted to go back on Folfox since I had done so well on it. I politely said no thank you, not yet, can I do the folfiri.
Enjoy Hawaii and the waves, sunshine and earth. And know that I'm thinking of you and will add you to my list of prayers. Keep in touch and let us know what you decide when you return. With hugs and love and all good wishes, Joyce0 -
Tara
Tara,
I am sending hugs and positive vibes to you. I can't imagine what you are going through. As always I admire your strength and positive attitude. You are such a strong person. Have a great time dancing in the waves, come back rested and kick that cancers butt.
From your friend, Maureen
ps I really don't know what to say---hang in there-----your onc. sounds amazing.0
Discussion Boards
- All Discussion Boards
- 6 CSN Information
- 6 Welcome to CSN
- 121.2K Cancer specific
- 2.8K Anal Cancer
- 440 Bladder Cancer
- 306 Bone Cancers
- 1.6K Brain Cancer
- 28.4K Breast Cancer
- 391 Childhood Cancers
- 27.9K Colorectal Cancer
- 4.6K Esophageal Cancer
- 1.2K Gynecological Cancers (other than ovarian and uterine)
- 12.9K Head and Neck Cancer
- 6.3K Kidney Cancer
- 666 Leukemia
- 789 Liver Cancer
- 4.1K Lung Cancer
- 5.1K Lymphoma (Hodgkin and Non-Hodgkin)
- 235 Multiple Myeloma
- 7.1K Ovarian Cancer
- 53 Pancreatic Cancer
- 486 Peritoneal Cancer
- 5.3K Prostate Cancer
- 1.2K Rare and Other Cancers
- 532 Sarcoma
- 717 Skin Cancer
- 647 Stomach Cancer
- 190 Testicular Cancer
- 1.5K Thyroid Cancer
- 5.8K Uterine/Endometrial Cancer
- 6.3K Lifestyle Discussion Boards