Stivarga? Opinion? Knowledge? Recommendations?

Please feel free to read, share your thoughts, your stories and connect with others!
PeterG
Posts: 47
Joined: Tue Feb 03, 2015 12:32 pm

Stivarga? Opinion? Knowledge? Recommendations?

Postby PeterG » Fri Apr 13, 2018 6:46 am

Just finished third round of Xelox (Xeloda with Oxaliplatin) . Lung meta stable, but side effects ( cold sensitivity, neuropathy and fatigue)are nearly unbearable for me, working full time in cold New England. Onc has recommended a few weeks off, then see if I remain stable on Stivarga. (Says we can go back to 5FU with Oxali if not.) Anyone have experience with Stivarga as a palliative/maintenance med. long term? Side effects? Effectiveness?
DX Aug. 2013 Resection 09/13.
08/14 CT : .7 CM pulmonary nodule--further CT: growth & multiple nodules.
03/15 15 dendritic cell vaccine-monthly
05/16 begin 3000 MG Xeloda & Avastin
11-16 shrinkage.”Sstable" CT scan scheduled
2/2017: Port installed. Begin Folfiri and Avastin
8/2017: Xeloda, Avastin and Iranotican. 3-wk cycle.
2-6-18: small pulmonary embolim—some growth in one pulmonary tumor. Start Xarelto.
2-8-18 : Change of chemo: Xeloda with Oxaliplatin no avastin.

stu
Posts: 845
Joined: Sat Aug 17, 2013 5:46 pm

Re: Stivarga? Opinion? Knowledge? Recommendations?

Postby stu » Sat Apr 14, 2018 1:01 pm

Hi ,
No direct experience but I have watched with interest . Side effects do sound tough but I have noticed those it works for seem to do really well with it .
Well done with gaining stability . I get the whole icy and cold thing . Scotland is challenging for that one too . I use to wrap my mum up like a parcel .
Hopefully bump this back up for a more informed reply too!!
Take care and I hope it goes well for you .
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared

User avatar
O Stoma Mia
Posts: 1450
Joined: Sat Jun 22, 2013 6:29 am

Re: Stivarga? Opinion? Knowledge? Recommendations?

Postby O Stoma Mia » Sat Apr 14, 2018 1:58 pm

PeterG wrote:...Anyone have experience with Stivarga as a palliative/maintenance med. long term? Side effects? Effectiveness?

I have no experience with Stivarga, but there have been several members here who have had it, and there are some threads here on the topic, e.g.,
In 2014, Guinevere wrote:...There's a good Regorafenib/Stivarga thread here http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=44278. I will say I was on it but I grew new tumors and my experience with it was rough near the end of treatment. I started out alright but progressively got to feeling worse and worse. That said, there are some for whom the side effects aren't that bad and they experience shrinkage....

PeterG
Posts: 47
Joined: Tue Feb 03, 2015 12:32 pm

Re: Stivarga? Opinion? Knowledge? Recommendations?

Postby PeterG » Sat Apr 14, 2018 7:55 pm

Thanks. The thread was very informative. Worried about side effects, but will see.
DX Aug. 2013 Resection 09/13.
08/14 CT : .7 CM pulmonary nodule--further CT: growth & multiple nodules.
03/15 15 dendritic cell vaccine-monthly
05/16 begin 3000 MG Xeloda & Avastin
11-16 shrinkage.”Sstable" CT scan scheduled
2/2017: Port installed. Begin Folfiri and Avastin
8/2017: Xeloda, Avastin and Iranotican. 3-wk cycle.
2-6-18: small pulmonary embolim—some growth in one pulmonary tumor. Start Xarelto.
2-8-18 : Change of chemo: Xeloda with Oxaliplatin no avastin.

rp1954
Posts: 1377
Joined: Mon Jun 13, 2011 1:13 am

Plan B

Postby rp1954 » Sat Apr 14, 2018 9:08 pm

Yes, 1-2 did well on a lower dose, like half dose or less but at full dose the odds and side effects one might best allow for a Plan B ready in the wings.

PeterG from earlier thread ... I have been dealing with hand-foot effects of Xeloda for years. The Oxi is bringing this to a new level. Short-term disability for a person with lung mets on palliative chemo who needs insurance to pay for treatment is really not a possibility. Nor is it psychologically or economically feasible for me to stop working.

Plan B
There's a lot of fundamentals you haven't mentioned here, things that would help compare experience and plans. e.g. KRAS/BRAF/MSS, CEA, CA199, WBC etc. But given the overall odds and your need for functionality, instead of oxi-Avastin added to 5FU, we've been happy with oral 5FU prodrug, celecoxib, targeted cimetidine, baby aspirin, IV vitamin C and powerful supplements, where most people apparently never see potent levels, consistently across the board. Back when you were hearing esoterica from Chang and Nesselhut, I had hoped they would offer more hard hitting, basic integrative formulas, but apparently not. I feel like we've had better results with our artillery tactics - aim [bloodwork and path], fire, spot the next shot [based on bloodwork, eventually scan, change the shell type, size, powder, aim], fire...

Basically you would need to intensify Dr Lin's ADAPT formula enough for the 5FU to work again or slow this stuff down, without the side effects of oxi- and Avastin. Our answer for prevention of hand foot syndome was two fold: IV vitamin C and a different 5FU drug, tegafur-uracil, that is made in Taiwan, Korea, India, China, Japan (still?) and Europe(still?), perhaps available in Mexico (it's listed in their national formulary). My wife plays the piano after almost 8 years of chemo, that's not likely with Folfox. I've seen published mentions of IV vitamin C suppressing Xeloda's external effects, but we added other supplements too, to repair internal toxicities (5FU-folic acid). Even without the extras, Lin's earlier ADAPT patients had remarkable survivals despite mCRC and prior failures e.g. median OS headed over 8 years.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

PeterG
Posts: 47
Joined: Tue Feb 03, 2015 12:32 pm

Re: Stivarga? Opinion? Knowledge? Recommendations?

Postby PeterG » Sun Apr 22, 2018 9:06 pm

Thanks RP 1954. Keeping plan B in mind. No $ left for Chang Nesselhut esoterica. Immunotherapies are certainly developing and the possibility of a Plan C becoming widely and affordable available is the light at the end of the tunnel for a lot of long term palliative care mCRC folks. I do not yet share thatI have cancer with most acquaintances and colleagues, and I hide and bear the chemo side effects; my cancer continues not to show outward signs. I apparently present as a person with robust health and energy. I am very lucky, as apparently is your spouse. The vitamin C thing is fascinating.
DX Aug. 2013 Resection 09/13.
08/14 CT : .7 CM pulmonary nodule--further CT: growth & multiple nodules.
03/15 15 dendritic cell vaccine-monthly
05/16 begin 3000 MG Xeloda & Avastin
11-16 shrinkage.”Sstable" CT scan scheduled
2/2017: Port installed. Begin Folfiri and Avastin
8/2017: Xeloda, Avastin and Iranotican. 3-wk cycle.
2-6-18: small pulmonary embolim—some growth in one pulmonary tumor. Start Xarelto.
2-8-18 : Change of chemo: Xeloda with Oxaliplatin no avastin.

rp1954
Posts: 1377
Joined: Mon Jun 13, 2011 1:13 am

Re: Stivarga? Opinion? Knowledge? Recommendations?

Postby rp1954 » Mon Apr 23, 2018 1:33 pm

...Immunotherapies are certainly developing and the possibility of a Plan C becoming widely and affordable available is the light at the end of the tunnel for a lot of long term palliative care mCRC folks.

At one level, I don't allow myself that. We've had our fingers burnt since the 70s-80s with Big Medicine promises and slow successes. Also we couldn't qualify on that level of insurance for newly commercialized offerings, $$$$$$$$. So for us, the best defense, is a good offense.

Right now, started early enough, before CC stage 4a and some CC 4a's the generic technologies are pretty much already there, if anyone uses them. We've made them work in the most common CA199 and biomarkers case for CC 4b (4c, AJCC 8th ed). "Right now" is the basic time to start the small, extra steps to maximize the possible quality and quantity.

...hide and bear the chemo side effects

If you can successfully crossover an ADAPT style backbone (celecoxib with Xeloda, or UFT), and enough nutraceuticals, I'm convinced that "hide and bear" is usually not necessary for side effects that aren't generated anymore.

...my cancer continues not to show outward signs. I apparently present as a person with robust health and energy.
I'm glad you have this respite, that is a potentially common result of treatment, (real) supernutrition and exercise. To me, combined with even more mild or natural chemistry, all these can be leveraged over time, for more time and quality.

...lucky, as apparently is your spouse.

mmmm, I'm more like a card counter. With discipline and knowledge, it is possible to systematically "cheat the house" even though luck and social interactions are elements. My failure is getting other people to count their cards and collaborate.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: glenncal, Yahoo [Bot] and 37 guests