regorafenib (stivarga) work for anyone?

[Allen_Wolf]

hi everyone,

my father in law has gone through almost five years of fighting stage 4 colon cancer metastatic to liver.. he has tried multiple angles of chemo, and a liver resection. now, every time it comes back (every 2-3 months), the doctors have been doing RFA on him.

however, this time, oncologist wants him to try regorafenib (stivarga). has anyone tried this?

from what I have read, it's very new and I only found one study which I am a bit confused about.. "survival rate up 1-2 months.." can someone please clarify the research done on this pill? looks like it's the only test done and to people who were pretty much not given any alternatives.. how does that apply to people who are not in that state?


Some feedback on personal experiences with this pill as well as information would be greatly appreciated


thank you,
-Allen

[Bev G]

Hi Allen,

Please do a search on "regorafenib" in the general search field. There is a current thread, and I believe all of the members here who have been on this new drug have posted about their experiences, which by and large seem not to be too promising. I think you'll get the info you want from that thread. Best of luck, and so nice to have you on the board.

Bev

[Allen_Wolf]

Hi Allen,

Please do a search on "regorafenib" in the general search field. There is a current thread, and I believe all of the members here who have been on this new drug have posted about their experiences, which by and large seem not to be too promising. I think you'll get the info you want from that thread. Best of luck, and so nice to have you on the board.

Bev

will do, thank you

[lepperl]

I am doing okay, voice changes and very dry mouth hard to eat, and a little more tired . But thats it for side affects for me. Anyway, just started third week and I don't have a scan yet but Dr. was very pleased with physical exam . He felt the palpable nodes had a least stopped growing. They had been getting bigger almost daily. And the lymphedema in my legs is getting better again so that is a good sign. I will let you know as soon as they decide to get scan confirmation.

PS- I almost did not try regorafebin because of the thread here. It scared me to death. Don't misunderstand. I love the thread and all others like it. The people here give the best advice I get. Better than most of the health professionals. And hearing experiences from people we talk to all the time and not just reading about it in a journal article is great but everyone is Different so I am glad my Dr. talked me into giving it a shot. Besides if I ever get the terrible side effects I can stop it any time I want

Lori

[Allen_Wolf]

I am doing okay, voice changes and very dry mouth hard to eat, and a little more tired . But thats it for side affects for me. Anyway, just started third week and I don't have a scan yet but Dr. was very pleased with physical exam . He felt the palpable nodes had a least stopped growing. They had been getting bigger almost daily. And the lymphedema in my legs is getting better again so that is a good sign. I will let you know as soon as they decide to get scan confirmation.

PS- I almost did not try regorafebin because of the thread here. It scared me to death. Don't misunderstand. I love the thread and all others like it. The people here give the best advice I get. Better than most of the health professionals. And hearing experiences from people we talk to all the time and not just reading about it in a journal article is great but everyone is Different so I am glad my Dr. talked me into giving it a shot. Besides if I ever get the terrible side effects I can stop it any time I want

Lori

thank you so much for your feedback

please do let me know how the scan results go..

[rp1954]

Lori was taking a load of supplements before. Some people ameliorate their chemo side effects with supplements. CTCA also does this. We could use more details.

[jdepp]

oncologist wants him to try regorafenib (stivarga). has anyone tried this?

from what I have read, it's very new and I only found one study which I am a bit confused about.. "survival rate up 1-2 months.." can someone please clarify the research done on this pill?

Here's a recent study:

Regorafenib monotherapy for previously treated metastatic colorectal cancer (CORRECT): an international, multicentre, randomised, placebo-controlled, phase 3 trial; Grothey A, Cutsem EV, Sobrero A, Siena S, Falcone A, Ychou M, Humblet Y, Bouché O, Mineur L, Barone C, Adenis A, Tabernero J, Yoshino T, Lenz HJ, Goldberg RM, Sargent DJ, Cihon F, Cupit L, Wagner A, Laurent D, for the CORRECT Study Group; Lancet (Nov 2012)

BACKGROUND: No treatment options are available for patients with metastatic colorectal cancer that progresses after all approved standard therapies, but many patients maintain a good performance status and could be candidates for further therapy. An international phase 3 trial was done to assess the multikinase inhibitor regorafenib in these patients. METHODS: We did this trial at 114 centres in 16 countries. Patients with documented metastatic colorectal cancer and progression during or within 3 months after the last standard therapy were randomised (in a 2:1 ratio; by computer-generated randomisation list and interactive voice response system; preallocated block design (block size six); stratified by previous treatment with VEGF-targeting drugs, time from diagnosis of metastatic disease, and geographical region) to receive best supportive care plus oral regorafenib 160 mg or placebo once daily, for the first 3 weeks of each 4 week cycle. The primary endpoint was overall survival. The study sponsor, participants, and investigators were masked to treatment assignment. Efficacy analyses were by intention to treat. This trial is registered at ClinicalTrials.gov, number NCT01103323. FINDINGS: Between April 30, 2010, and March 22, 2011, 1052 patients were screened, 760 patients were randomised to receive regorafenib (n=505) or placebo (n=255), and 753 patients initiated treatment (regorafenib n=500; placebo n=253; population for safety analyses). The primary endpoint of overall survival was met at a preplanned interim analysis; data cutoff was on July 21, 2011. Median overall survival was 6·4 months in the regorafenib group versus 5·0 months in the placebo group (hazard ratio 0·77; 95% CI 0·64-0·94; one-sided p=0·0052). Treatment-related adverse events occurred in 465 (93%) patients assigned regorafenib and in 154 (61%) of those assigned placebo. The most common adverse events of grade three or higher related to regorafenib were hand-foot skin reaction (83 patients, 17%), fatigue (48, 10%), diarrhoea (36, 7%), hypertension (36, 7%), and rash or desquamation (29, 6%). INTERPRETATION: Regorafenib is the first small-molecule multikinase inhibitor with survival benefits in metastatic colorectal cancer which has progressed after all standard therapies. The present study provides evidence for a continuing role of targeted treatment after disease progression, with regorafenib offering a potential new line of therapy in this treatment-refractory population. FUNDING: Bayer HealthCare Pharmaceuticals.

[lepperl]

Lori was taking a load of supplements before. Some people ameliorate their chemo side effects with supplements. CTCA also does this. We could use more details.

this is correct. I started out feeling better than most when they start because of all the extras I was doing. However, whenever I start a new chemo I stop all suppliments. I give the medication a chance to work by itself. Some will argue supplimentsd hinder chemo. It is only after chemo does not seem to be wroking alone that I re-introduce the suppliments. I also must add that as of today I am really getting tired and nausiated. On thursday I will finish my 1st full cycle so I am at the home stretch and then I get a break. It may be a long break because I am starting radiation next week and I do not believe they will allow me to have regorafenib with it. I also have had serious bladder issues and am fighting an infection so this may be he cause of my increased symptoms and not the regorafenib. I will be restarting my suppliments friday after full cycle of chemo. I have not yet had a full conversation with the naturopath at CTCA. ( this will happen next week) So I am still doing my own thing based on my own research. I will share whatever they have to say to anyone interested. Just PM me.
Lori

[Allen_Wolf]

thank you for all your input

how are you guys doing so far?

as far as my father in law, he's on week three of the first round of this stuff

[ElaineS]

My husband has the colon cancer that went to the liver also. He was doing well on the chemo and other than being a bit tired, seemed just about normal. They decided to try him on the Stivarga - what a BAD idea. After the first week of feeling and looking horrible and losing about 10 pounds, they cut the dosage in half. After the second week of feeling and looking even worse on half a dose he stopped taking it. It took a couple weeks to start feeling good again and he is now back on the intravenous medication and back to normal. We went to a wedding about a week ago and talked to another person who's family member tried it, they had the same reaction.
I think this must be for someone who is laying in bed slowing dying, so they don't notice how horrible it makes them feel.

[crazymotherof8]

Allen,
Lepperl passed away, her is link to the post by her mom.
viewtopic.php?f=1&t=39036&hilit

[Kirranic]

Hi just wanted to say to anyone checking in on this thread that I was on Regorafenib for 5 full cycles, full dose, with no progression. Minimal progression has just occurred due to the fact I had to have a break while having radiation for a brain met. This has nothing to do with control of lung mets obviously, as blood brain barrier prevents movement of drugs to brain.... I had only the voice problem and minimal had foot redness, controlled by keeping feet and hands moisturised with urea based cream and socks. Effects were worst the first cycle. I am 36 and small female. Unfortunately because of the break, they may not be able to restart me.... I have multiple lung mets and hopefully a shrunk brain met, so have no options other than stubbornness to stay with my kids now, in reality less than 6 months, BUT this drug gave me probably 6 I wouldn't have had. Please try if you are availed the opportunity, they monitor you with regular checks and blood tests, you can discontinue if it doesn't work, but I way exceeded the quoted average progression free, please don't give up.

[TomB]

I just started my third week on Stivarga and I have not experienced any side effects to date. I read many forums prior to starting this medication and I was very concerned about taking this drug. I don't know if it will work. I had gone to MD Anderson prior to taking this and discovered that the options of proton radiation and photon therapy are not available to patients with Stage 4 Colon Cancer, and have more than 3 tumors. Has anyone been taking this drug for an extended period of time? My blood work has remained consistant, but my platelets have dropped a little. Whats troubling to me is because I look healthy, and work full time, everyone assumes that I am in perfect health. I won't have confidence in this drug until I have a CT scan in August.

[Parkplace]

My husband has been on Stivarga for three cycles. He started it with four pills and it nearly killed him. They went to half the dose and he seemed to be doing better but was treated for anemia twice and has numerous blood transfusions because of this. He suffered Heart Attacks in April and was thought that this drug was a catalyst in the heart attacks. He is now off of it since Tuesday ,four days early on a 21 day cycle as we were shocked to find that. although his CEA was done to 14 from 88 during the Stivarga treatment. he had a Colonoscopy last week and has a tumor that is so large that is causing complete blockage of his colon and is on a liquid diet, which is scary because he lost 40 pounds while on Stivarga. The direction of treatment now looks like he has a choice of Radiation or surgery. We go today to get a CT scan and talk to Doctors about the next phase in treatment. The thought of my poor husband having a bag for the rest of his life as a result,should he choose surgery saddens me because he is young and generally in good spirits and I think this would diminish his extraordinarily good attitude. His having radiation is choice two and we were told yesterday that a patient that has been on Stivarga have complications that are different then patients who have not been on it,. They prefer to allow the patients 3-6 weeks to get the drug out of their system before radiation starts but my husband doesn't have that luxury of time since the tumor is so severe they will start RE immediately once he decides between the two treatments. If anyone knows about Radiation after being on Stivarga please share what you know about the extra danger involved in this or if you have consulted doctors about this and information that may help in deciding this. Either way I am afraid we are at a cross roads that have burst our bubble of denial that we have surrounded ourselves with for 4.5 years of his treatment , prior to Stivarga things have been pretty good with side effects that were bad at times from other drugs but nothing like the last three cycles of Stivarga has done to him and now the growth of this Tumor while on the drug and the choices that lay ahead frankly are shocking and I am scared as hell about this Radiation warning we have been given due to Stivarga in his system. Hearing other peoples experience and what they know about the two treatments together would be very helpful. Thank you for anything you can share that will educate us further. Prayers to all of you and your loved ones who are going through this too. I would be happy to answer questions about this drug and our experiences for anyone who has questions also.

[Candyys03]

Anyone else on Regorafenib (Stivarga) made by Bayer and FDA approved in 2012 ?
It was approved so it must have worked for someone.

To tell you the truth I have not seen much good news on it and the posts here are a little scary but everyone is different.
I will be starting on it in a few days and I hope I'm like you Tom and I only get a few or no side affects.
I can handle all the usual side affects but heart,liver, stomach issues or pain. Makes you think twice about it.

No one at my clinic has been on this I am the first.The guinea pig.
This warrior will put on my armor and give the cancer a good fight against those pesky lung mets.
Hoping that it will work for me and for good a outcome.

Candy