Looking for answers

Carol0924

Yes, I'm one of those people who have been lurking but never posting for about two years now.  I come to the web site for information and more often than not I find what I'm looking for.  I've been with all of you through the happy dance days and also the loss of loved ones.  Now I'm turning to you for help, informatiom, whatever you can tell me. 

My husband was diagnosed with stage 4 colon cancer in November of 2011.  Colon resection in December, 12 rounds of Folfox, declared NED on June 18, of 2012.  January 2013 (our first day of retirement) CT showed mets on his liver.  Liver resection and ablation (sp?) in February of 2013, 12 more rounds of Folfox and then NED in August.  January of 2014 CT showed new mets on liver and lungs.  12 rounds of Folfox and Avastin. CEA stable and Liver mets gone but lung mets continue to be there.  More of Folfox every two weeks.  In September, CEA rising, December 5th, CEA continuing to rise, cancer has once again become resistant to chemo.  Doctor decided to stop chemo and prescribe Stivarga. 

He took his first dose today.  I've not read anything positive about this drug, only horrible side effects or it just did'nt work.  The doctor told him two weeks ago that he does not think he will be around this time next year. Needless to say we took that news pretty hard, and he spend most of the Christmas holidays depressed, and not sleeping, despite all of our children and grandchildren being here.  Guess my question to anyone who reads this is...Is there anyone out there that has had a positive experience with this drug?  

His lung mets are still very small, largest one less that 3 mm, but his rising CEA has always been a good indicator of his cancer raising it's ugly head again.  I'm hoping that starting this drug before the cancer grows anymore may produce some positive results, or at the very least hold it at bay for a while, but unfortunately I am unable to find any such results.  Hoping that those that have a good response to this drug are just not posting....

herdizziness

Ahhh Carol

I wish I could help, but I have yet to try that very drug, unfortunately, it appears I may be headed for that same scenerio as your husband, waiting to get a scan and blood tests (probably take a couple of weeks before can get in for scan) to confirm this chemo regime has stopped working.

I had the feeling last year was my last Thanksgiving dinner with my daughter and Christmas with my son, this had made me more joyous at everyday that I am here. I want to leave happy memories, not sad ones for my family, and I want to enjoy every moment I have left, every moment!!!  So I don't get depressed or sad, because there are just to many people to laugh with, to hug and depart my "wisdom" (LOL) upon, plus I want to leave as many smiles I can in pictures!!

There are still trials to look into, and maybe this chemo will work well for him, I understand the fear of that chemo, I've heard a lot of bad things, but then I have to remind myself that it HAS worked for a few people, and who knows, maybe we will be the lucky ones?

I know this is a scary time, but hopefully the new chemo will work for him.

Winter Marie

Carol0924

herdizziness said:

Ahhh Carol

I wish I could help, but I have yet to try that very drug, unfortunately, it appears I may be headed for that same scenerio as your husband, waiting to get a scan and blood tests (probably take a couple of weeks before can get in for scan) to confirm this chemo regime has stopped working.

I had the feeling last year was my last Thanksgiving dinner with my daughter and Christmas with my son, this had made me more joyous at everyday that I am here. I want to leave happy memories, not sad ones for my family, and I want to enjoy every moment I have left, every moment!!!  So I don't get depressed or sad, because there are just to many people to laugh with, to hug and depart my "wisdom" (LOL) upon, plus I want to leave as many smiles I can in pictures!!

There are still trials to look into, and maybe this chemo will work well for him, I understand the fear of that chemo, I've heard a lot of bad things, but then I have to remind myself that it HAS worked for a few people, and who knows, maybe we will be the lucky ones?

I know this is a scary time, but hopefully the new chemo will work for him.

Winter Marie

Winter Marie
Lets hope that

Winter Marie

Lets hope that this works for you and my hubby.  It's funny, I've been reading about you and others on this site and feel like I know you already.  You gaining any weight?  I know you were down to next to nothing for a while.  My left leg weighs more than you did  

He seems to be coming out of his depression, a little.  Breaks my heart to see him so sad.  We talk alot about his feelings and I encourage him to enjoy every day, every minute, but the thought of leaving all of us takes weighs heavy on his heart, and mine.  The unknown is what gets him.  

I've not found any trials that are an option for him yet.  There is one at Stanford that NanaB is going to start this week, I think.  Talked to the doc about that one, but we live about 2 1/2 hours away from Stanford.  He said if that trial were closer, he would suggest it, but the drive and being away from home might take it's toll on both of us.  This trial pitts this Stivarga aganist a new similar one that seems to have less side effects.  Anxious to see how she does on it. 

I will post how he does on it.  This is only day one, but so far so good. 

lilacbrroller

Carol0924 said:

Winter Marie
Lets hope that

Winter Marie

Lets hope that this works for you and my hubby.  It's funny, I've been reading about you and others on this site and feel like I know you already.  You gaining any weight?  I know you were down to next to nothing for a while.  My left leg weighs more than you did  

He seems to be coming out of his depression, a little.  Breaks my heart to see him so sad.  We talk alot about his feelings and I encourage him to enjoy every day, every minute, but the thought of leaving all of us takes weighs heavy on his heart, and mine.  The unknown is what gets him.  

I've not found any trials that are an option for him yet.  There is one at Stanford that NanaB is going to start this week, I think.  Talked to the doc about that one, but we live about 2 1/2 hours away from Stanford.  He said if that trial were closer, he would suggest it, but the drive and being away from home might take it's toll on both of us.  This trial pitts this Stivarga aganist a new similar one that seems to have less side effects.  Anxious to see how she does on it. 

I will post how he does on it.  This is only day one, but so far so good. 

stivarga experience

Hi, Carol. I am currently taking Stivarga, and have posted about it, but since this board "moves" my posts might have gotten buried.

I've been on it since September and have had really good results. Stivarga is not really supposed to shrink tumors but only stabilize them. WEll.... my CEA dropped from 500 to 90 when I first started on it.  However, I took it immediately followng a failed clinical trial, so my onc doesn't know whether the good results were the stivarga alone or if this drug just happens to be a good fit with the trial drugs which  may have residually been in my system. (science!) I emailed the trial Dr. about it but got no response. It could also be that I"m just on the high end of the drug effectiveness bell curve for Stivarga.  Now my CEA has stabilized at 30 and my last scan showed mixed results,  three new tiny liver mets, but lots of calcified old tumors and actually some lung tumor shrinkage.  

The way I look at it, Stivarga got me to Thanksgiving and Christmas at least! I have to be thankful for that. I had lost a lot of weight caused by erbitux/irinotecan damage to my digestive system, but once on Stivarga I'm fattening up again. 

Some info: in my first month of taking it, I got a massive full body rash. REally freaked me out. This was determined to be a "drug rash" caused by Stivarga - by onc and a dermatologist.  Onc says the rash is a good thing, and indicates a good response. After a couple of weeks the rash went away. I take my pills every day around 8, and now, I get this strange temporary rash and skin flush every day in the afternoons around 2 or 3. Usually on my face and chest and it goes away in an hour or so.  My eyes are always white and not affected. I look like rocky raccoon (board will not let me type the word that sounds like koon) sometimes.   A couple times just my nose turned red, once I had elvis sstyle mutton chop sideburns (red streaks). I like to look in the mirror when I feel flushed and see what each day's reaction will be. some are stranger than others, Today's was just a chest rash, full red face, and the usually white raccoon eyes.   I do NOT take selfies, but I should. aah. cancer

"hand and foot", a/k/a chemical burns, kicked in late last month. month three? that is such a joy. I took Xeloda for nearly a year and never got it, although Xeloda really didn't work for me. I'm still mapping out the HF cycle, seems the first week burns and I can't function at all. Once the blisters crust over (around day 7) hand functionality is restored and there is little to no pain. It affects the balls of my feet but they don't hurt as much as my hands so I can actually walk. Well, shuffle.  same with hands, once I Have hard blisters, I can walk as normal and am no longer shuffling. 

I do three pills a day for three weeks and then a week break. So far I feel allright and don't seem to have other side effects. my hair seems to have stopped growing maybe. not sure. -week three I am tired, but weeks one and two I am zipping around.  

So that's how it is for now. I'm looking into more clinical trials as well, trying to buy myself incremental bits of time.  

good luck to your husband, Hope it works for him. 

take good care

Karin

Carol0924

lilacbrroller said:

stivarga experience

Hi, Carol. I am currently taking Stivarga, and have posted about it, but since this board "moves" my posts might have gotten buried.

I've been on it since September and have had really good results. Stivarga is not really supposed to shrink tumors but only stabilize them. WEll.... my CEA dropped from 500 to 90 when I first started on it.  However, I took it immediately followng a failed clinical trial, so my onc doesn't know whether the good results were the stivarga alone or if this drug just happens to be a good fit with the trial drugs which  may have residually been in my system. (science!) I emailed the trial Dr. about it but got no response. It could also be that I"m just on the high end of the drug effectiveness bell curve for Stivarga.  Now my CEA has stabilized at 30 and my last scan showed mixed results,  three new tiny liver mets, but lots of calcified old tumors and actually some lung tumor shrinkage.  

The way I look at it, Stivarga got me to Thanksgiving and Christmas at least! I have to be thankful for that. I had lost a lot of weight caused by erbitux/irinotecan damage to my digestive system, but once on Stivarga I'm fattening up again. 

Some info: in my first month of taking it, I got a massive full body rash. REally freaked me out. This was determined to be a "drug rash" caused by Stivarga - by onc and a dermatologist.  Onc says the rash is a good thing, and indicates a good response. After a couple of weeks the rash went away. I take my pills every day around 8, and now, I get this strange temporary rash and skin flush every day in the afternoons around 2 or 3. Usually on my face and chest and it goes away in an hour or so.  My eyes are always white and not affected. I look like rocky raccoon (board will not let me type the word that sounds like koon) sometimes.   A couple times just my nose turned red, once I had elvis sstyle mutton chop sideburns (red streaks). I like to look in the mirror when I feel flushed and see what each day's reaction will be. some are stranger than others, Today's was just a chest rash, full red face, and the usually white raccoon eyes.   I do NOT take selfies, but I should. aah. cancer

"hand and foot", a/k/a chemical burns, kicked in late last month. month three? that is such a joy. I took Xeloda for nearly a year and never got it, although Xeloda really didn't work for me. I'm still mapping out the HF cycle, seems the first week burns and I can't function at all. Once the blisters crust over (around day 7) hand functionality is restored and there is little to no pain. It affects the balls of my feet but they don't hurt as much as my hands so I can actually walk. Well, shuffle.  same with hands, once I Have hard blisters, I can walk as normal and am no longer shuffling. 

I do three pills a day for three weeks and then a week break. So far I feel allright and don't seem to have other side effects. my hair seems to have stopped growing maybe. not sure. -week three I am tired, but weeks one and two I am zipping around.  

So that's how it is for now. I'm looking into more clinical trials as well, trying to buy myself incremental bits of time.  

good luck to your husband, Hope it works for him. 

take good care

Karin

Karin, that's the most

Karin, that's the most positive post I have ever read on Stivarga!  Thank you for posting. I read it to Bob, just to show him that some people do respond to this medication.  All he needs is a little positive reinforcement and he regains his positive attitude.  We are both very much aware of what the future hold for him, but any additional time we can get, we'll take, providing the side effects are not unbearable.  Always hoping that each new day will bring a cure for this awful disease.  

He is to take 4 pills a day for 3 weeks, the one week off.  His Onc told us to stop immediately and call if his side effects are bad and he will reduce the dosage.  Bob is 6'4" and about 220 lbs.  Don't know if size or weight matters with the dosage.  We are at the end of day one, and all is good.  Take care

Daisy13

I have been where you are now and offer my support to you as a former caregiver for my husband who had stage four colorectal cancer wth mets to liver and lungs.  You may private message me by clicking on my daisy icon.

This is only my experience ...

My husband was offerred Stivarga in the fifth year after his diagnosis when his lung mets (which actually remained relatively small and not numerous) had shown resistance to all other treatments.  His personal decision was to decline the treatment because he did not feel that his overall increased potential survival rate (approximately two months based upon studies at the time) justified the side effects and potential adverse effects.

I know what I have shared is not the positive experience that you have requested ...

but there are others who have been helped by this drug and have used it to buy time that allows other potentially life-saving or life-extending treatments to be discovered. 

The way through this cancer journey and the decisions made are quite unique.  

Sending you, your husband, and family strength. ~ Daisy

Annabelle41415

Thoughts

My thoughts are with you both.  I'm sorry but can't help you on your information but wishing you much success in the new treatment.  Anytime your husband has concerns or questions, we always welcome your concerns here.  Glad that you found us and are comfortable posting here as the internet can give you false information.  Welcome and hope you continue to post for both of you.

Kim

mukamom

Annabelle41415 said:

Thoughts

My thoughts are with you both.  I'm sorry but can't help you on your information but wishing you much success in the new treatment.  Anytime your husband has concerns or questions, we always welcome your concerns here.  Glad that you found us and are comfortable posting here as the internet can give you false information.  Welcome and hope you continue to post for both of you.

Kim

I can't help you

with the Stivarga since we haven't had to go that route. yet.  I am my husband's caregiver; he was dx IV colon cancer 12/08, so he's just hit his 6 year mark.  He's been "lucky" that the cancer has been limited to the colon and liver.  He's been in almost constant treatment the whole time, which seems to keep it from spreading anymore.

Keep us updated.

Angela

coloCan

mukamom said:

I can't help you

with the Stivarga since we haven't had to go that route. yet.  I am my husband's caregiver; he was dx IV colon cancer 12/08, so he's just hit his 6 year mark.  He's been "lucky" that the cancer has been limited to the colon and liver.  He's been in almost constant treatment the whole time, which seems to keep it from spreading anymore.

Keep us updated.

Angela

Stivarga and viagra?

Don't know how effective this may be but the last paragraph in this article refers to a trial using both for solid tumors;something to show to onc perhaps

http://medicalxpress.com/print339075473.html

 

 

Carol0924

coloCan said:

Stivarga and viagra?

Don't know how effective this may be but the last paragraph in this article refers to a trial using both for solid tumors;something to show to onc perhaps

http://medicalxpress.com/print339075473.html

 

 

Thank you everyone!

I sincerly appreciate every one of you taking the time to respond to my questions.  I'll will continue to keep you posted on his progress. I knew this was a wonderful place to come for answers, and  I'm so glad I decided to jump on this train, instead of just hovering.  ♥ Carol