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Another bad scan ***Replys to ya all

janie1
Posts: 753
Joined: Apr 2011

Well friends and family.......i hate to be a downer. Those of you who have upcoming scans.....do not fear. I have the worst luck.
I did folfox. Now clearly folfiri isnt working. I'm KRAS mutant, so i cant do erbitux.
Onc wants to add Avastin to Folfiri?????? Folfuri doesnt work.
Regorafenib & Zaltrap wont do any good since they have to be given with folfox or folfiri.
Tumors grow fast, so hardly time to do anything else........however.......willing to try anything.

John23....what is your TCM's number in Orlando? I'm serious.

Pete.....wish i could go on that tour to Germany with you.

I had always been cautiously hopeful......but i feel completely let down.

I doubt that the Sloan doc will help me with a clinical trial. I feel like I'm on my own.
The plan is to do avastin now with the Folfiri for 4 times, then rescan. Ha....like anything will be any different.
For the first time, I'm actually thinking about the reality of death in the not so distant future.

Trapbear's picture
Trapbear
Posts: 91
Joined: Sep 2009

Regorafinib was approved by the FDA today. You do not have to take it with folfiri or folfox, can be taken alone, three weeks on, one week off. Good luck!
Bill

annalexandria's picture
annalexandria
Posts: 2202
Joined: Oct 2011

Damn, I hate cancer and what it does to us so very, very much. Has your doctor looked into the "R" drug, since it's now approved? Isn't that for metastatic disease that hasn't responded to standard treatments? And if your Sloan doc won't help with getting into a trial, then I wold want to find someone who would. There are so many things out there in the works, and one of them could be the right one for you. Sending hopes for strength your way~Ann Alexandria
PS I have to say that your kindness in thinking of others first, and being worried about those with upcoming scans, just brought tears to my eyes. You truly have a good heart.

PhillieG's picture
PhillieG
Posts: 4667
Joined: May 2005

I'm sorry to hear this. I was watching NOVA on PBS and they had a section on treatments in the works which are fascinating and not pie-in-the-sky fantasy, but things don't happen as quickly as we need them.
-phil

Chelsea71
Posts: 1170
Joined: Sep 2012

Bill is right. The med he is referring to( commercial name is Stigvara) sounds quite promising. You should mention it to your onc.

Good luck

lepperl's picture
lepperl
Posts: 39
Joined: Jul 2012

Hi my name is Lori. Your post caught my eye because I feel the same way. I am so sorry you have to go through this. I too did oxi and xeloda and Avastin and now folfiri with avastin and I to have never had a good scan. 5 bad scans in a row each one showing just a little more progression. My last scan was several months ago and I am do for another but my Dr is going to wait until I comlpete 12 rounds of chemo in a row before we scan again. I feel good so why rock the boat. I am glad we are no longer scanning so often because each time I get a scan I have to pick myself up off the floor yet again. Pay attention to pete and tanstafle. They have great ideas and do great research. They have really inspired a lot of my research. I have added celebrex, tagamet, essiac tea,apatone, ic-6, grape seed extract, and an endless list of vitamins to my treatment plan. My Doctor knows and does not give me a hard time. Some will say this can hinder chemo but chemo has let me down so I don't want to hear it. I feel great other than a minor set back I had last week. My right kidney failed due to a blocked ureter and I had a minor set back but am much better now. You need to regroup. Cry, kick something, throw a fit, whatever you need. Get it out of your system and then remember your not dead yet. Live each day to the fullest. Try to eat well, hydrate, and exercise if you can. Then research. Maybe even consult with an integrative Dr and develop a complimentary treatment plan to follow with chemo. Don't go down without a fight! Get knocked down 5 times get up 6. You are in my thoughts and prayers. Stay strong.
Lori
PS: I am stage 4 KRAS mutant, signet ring cells, lymph node involement, not currently a surgical candidate, bla,bla,bla..... I was diagnosed over 1 year ago and against all odds still hear kicking and screaming. I should have been dead 6 months ago and I just went back to work. Someone on the colon club said to me "you keep skewing those odds baby" and that is exactly what I indend to do. I hope thats what you want to do too!

Maxiecat's picture
Maxiecat
Posts: 524
Joined: Jul 2012

(((hugs)))). I am so sorry that your scans are not good... I hope you can find a new treatment plan that will give you some good results.

Alex

luvinlife2
Posts: 172
Joined: Jul 2012

If you have the finances, we have a clinic here in BC, Canada that just brought over the same hyperthermia machines used in Germany and it's cheaper. I did one treatment of the full body hyperthermia and my CEA dropped from 49 to 24. A CT scan a week later, showed my tumors starting to die. I'm going to have a couple more and am hoping for a complete remission. The best results are obtained in conjunction with chemo so even if you could tolerate Xeloda it would help a lot. The theory is that heat kills the cancer, but opens all the blood vessels and increases circulation up to 400%. The chemo reaches everywhere in the body and is recirculated many more times so is more effective and efficient.

I can give you more info in a pm if you are interested. I've met a lot of people from the US, New Zealand and eastern Canada who've come for the treatments. Many of them have had very good success with their treatments. Personally, I'm very excited about it. After my 1st treatment which was done within 24 hours of my 65th chemo treatment, I felt like I'd never ever even undergone chemo. I had NO side effects from my chemo the day before. Nothing, not even the funny taste in the back of my throat. Just felt a little tired.

Whatever route you choose, I wish you well and pray something will work for you :)

DianaCEO
Posts: 9
Joined: Oct 2012

Thank you for the information, I am looking at this soon. It was great to know that you did not have any side effects. I called University of Texas where Dr. Joan Bull started Hyperthermia and spoke with her Nurse Practicitioner, Thersa, and she said they never had a death in the years since they started, 25% of patients were completely healed, 50% in remission, other 25% had better quality of life. But their program is currently suspended for lack of funding. I appreciated your information as I did not know this mechanism.

jasminsaba
Posts: 149
Joined: Jul 2011

Hi there luvinlife2 - I was wondering if you'd be willing to message me the name and contact for your hyperthermia clinic in BC. I have family in Vancouver ... and a friend there who might be interested in this treatment. I would appreciate your help.

luvinlife2
Posts: 172
Joined: Jul 2012

I'll pm you :)

k44454445's picture
k44454445
Posts: 494
Joined: Jul 2012

i was told i had 3 months to live late june 2012 but i am still here. the people on this board picked me up off the floor when i signed on in july. thank God for them. do not give up & keep searching until you find a tx that will work. i wish you the best of luck & i will pray for you. keep your chin up!!!
hugs
judy

luvinlife2
Posts: 172
Joined: Jul 2012

Keep it going!!!!

:)

SharonVegas's picture
SharonVegas
Posts: 189
Joined: Feb 2012

"willing to try anything" that says it all. You can look at it like you are fighting a war and you are not going to win every battle but you're not going to lose every battle either. Expose yourself to the right medical center or onc becuase there are so many treatments out there for a doc who is willing to fight for you. You've already proved YOU are a fighter. You can do this because you want to. That makes all the difference.
I'm sending you a big hug because I know how it feels to get those scan results. You may have to return the hug on Tuesday after I get my scan results :-)
Ron of SharonVegas

taraHK
Posts: 1961
Joined: Aug 2003

I'm not trying to promote it, particularly, but I am on Gemzar (plus folfox and avastin -- soon to be xeloda oxali and Avastin) and it's working for me. I have also been on both folfox and folfiri previously and relapsed while on them. The addition of the Gemzar seems to make a difference, FOR ME, FOR NOW. You might want to ask your doctor about it??

There are still options out there.

Good luck!

Tara

taraHK
Posts: 1961
Joined: Aug 2003

sorry for double post.

mukamom's picture
mukamom
Posts: 357
Joined: Oct 2010

Don't give up. Find a way to fight..change docs, research on your own. Find out whats out there. You have to be your own advocate. This is your life. Knowledge is power.
Prayers for continued strength.

(((Hugs))
Angela

jen2012
Posts: 1195
Joined: Aug 2012

I'm really sorry...but agree with the others - don't give up. Give yourself the weekend to be pissed and sad and then get determined again! Prayers for the docs finding the right thing for you!

smokeyjoe
Posts: 1428
Joined: Feb 2011

I would ask the onc. about trials, or Regor.....seems to me you gotta search your own and present things suggestions to oncologist in some cases.....I know mine told me a website to go to research what's out there. It was like if I find something bring it to him if it's suitable he'll refer me. Where are your tumors exactly?? Have you had surgery etc. I have scans coming up next week, hoping the xeloda is working for me. Won't hear results until the following week.....ugggh....

janie1
Posts: 753
Joined: Apr 2011

Trapbear & Chelsea.....thanks for the info..... and Regorafenib....can be used alone....now that's a blessing.

Ann A .......I think you are the one with a "heart". You're always so kind. Now that humor....you can never leave this forum. If you ever decide to switch careers....i think you would do well in stand-up comedy. Laughter....that's a blessing too.
Haven't talked to doc about Regorafenib. Ya see.....i get about 1 minute with her. She will add Avastin......so that is what we will do this time.....end of appt.

Philly...... i looked up Nova on PBS.....yup, all sounds good.....now can they hurry up with all those good ideas.

Alex & Judy.........hugs and support MUCH appreciated. Back at ya.

Lori........thank you soooo much. I was wondering how you were after being in the hospital....what did they say.....obviously it wasn't bad news. I had always meant to PM you. Will do so this week.

luvinlife2......thank you so much for taking the time to provide that info. I am seriously considering that. I have an implanted HAI pump about the size of a hockey puck (made of stainless steel with a catheter in the Hepatic Artery)......so need to check that there would be no danger there. Will PM you.

SharonVegas.....thanks for the Hug. You will get one this week too, because the scan will be GOOD.....you hear me.

Tara.....I will ask about Gemzar. I guess that will be off-label, but I will definitely ask about it. Lisa was on it too. Tara, you are a super woman......how much folfox (esp. OXI) have you done? Incredible.

Angela.....thanks for prayers....and thanks for updating info on Roberts' trial. That is helpful to all. You better believe I wrote the Name of the trial down. :)

Smokeyjoe......I had liver surgery in January. One section did not have clear margins and it has been a run-a-way train since then......new tumors in liver, also 1 lymph node near liver. Had them ablated and radiated, but this last scan shows about 3 more in liver......so adding Avastin since chemo isn't keeping things at bay.

Jen.....thank you......i plan to watch "Revenge" tonight....love it. Maybe it will motivate me to take Revenge on cancer, one way or another.

Varmint5's picture
Varmint5
Posts: 371
Joined: Feb 2012

I have not kept up with the board like I would like to, insanely busy. But I am sorry for your crappy news and hope this new protocol with Avastin will turn things around. Have you checked into any liver targeted therapies? SIR Spheres or HAI? I would think it would be worth checking into since it's mainly your liver. Hopes and prayers you can get this turned around.

Sandy

janie1
Posts: 753
Joined: Apr 2011

Thanks for your reply.
I am one of the unsuccessful people who got the HAI a little over a year ago. I had wasted time going to a local oncologist when I was first diagnosed (who doesn't). Later I got the pump, and after using it twice the liver enzymes elevated (not too bad), but onc wanted to be cautious. She was getting me set up for future surgery.

Anyway, the pump was only used twice, then I had surgery, which in hindsight was probably too soon. I actually thought it was too soon back then, but I didn't speak up, thinking this "team" has more experience than I do.
Immediately, following surgery, tumors began popping up. I had RFA twice, and 1 lymph node by liver radiated.....now the latest 3 new tumors. Now using avastin which hadn't been used before, but that's no cure

I knew you were thinking about it for your daughter and then she had the sir spheres, so i am hoping that is keeping things at bay for her.
I've travelled to NY many, many times, and it hasn't been easy, but glad I tried.
It's most effective it appears, when the liver can be resected first, then the pump will "help" keep the liver tumor-free. I've talked to a lot of people with the pump. I can't say I know of anyone that had the pump first, then resected......and stayed clear. I'm sure there must be some people that did it the way that I did......I just don't know of any.

Varmint5's picture
Varmint5
Posts: 371
Joined: Feb 2012

I agree that two treatments probably wasn't enough. But how are we supposed to know these things? Long story about my daughter's experience with Theraspheres but the jury is still out... I'll have to post the story here when I get time. I don't know where you live but it might be something for you to check out - SIR Spheres. Suzanne Lindley at www.beatlivertumors.org knows everything there is to know about it. She has a hotline you can call. I had checked into HAI at a major cancer center near here for my daughter and that all fell apart. I just don't know very many people who have had it, and like you, most that I have met had the surgery then the pump implanted and HAI started at that time. Hang in there, Janie.

Sandy

Phil64's picture
Phil64
Posts: 435
Joined: Apr 2012

Janie,

I think I may end up in a similar boat as you. So far, eight FolFox treatments done. CT and PET Scan show a small (3mm) nodule in right lung. They will re-scan in a few more weeks to see if it's growing or if it goes away. Obviously I'm hoping it will go away, but it is in the lower lobe, right lung -- same place I already had a met removed.

If it's growing the onc said that FolFox is not working. He mentioned Erbitux and FOLFIRI as an alternative treatment. He is testing KRAS mutation now to see if these will be options.

I think it stinks to have gone through FolFox treatments only to find out that it may not have helped me at all. Suffering those side affects and finding out that it may not have helped is very FRUSTRATING.

My CEA has been climbing too. After initial surgeries (colon and lung resections) my CEA droped to 3.7 (near normal). It has climbed and last check was 10.2. Onc says it may be related to chemo treatments, but also said if it keeps climbing we will likely do additional scans several more weeks down the line.

Bottom line for me is I have to keep a positive outlook for my wife and family's sake... And hope that I can handle the side-affects from further treatments (if we have to switch).

Fighting cancer takes a lot out of a person.

Good luck with your fight!!!

And God Bless us all!!!

dmj101's picture
dmj101
Posts: 526
Joined: Nov 2011

We all have these dark moments. Please don't let them take you under.. I know it is hard to chase them away.. I have them too.. I wonder why it is exactly we fight. but I am sure we all have our reasons....
I have no advise medical wise that has not already been offered..
I am not into be**** a rah rah so I will just say.. Luck Love and Laughter can be found by looking into our souls and I hope you will not quit the fight...

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