Stivarga? Opinion? Knowledge? Recommendations?

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PeterG
Posts: 46
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: 644
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: 1202
Joined: Sat Jun 22, 2013 6:29 am
Location: Budapest

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: 46
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: 1285
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: 46
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.


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