So much ridiculousness don't even know where to begin

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smalltownmess
Posts: 84
Joined: Mon Aug 04, 2014 2:09 am

So much ridiculousness don't even know where to begin

Postby smalltownmess » Thu May 28, 2015 1:46 pm

This is a rant because cancer is the worst and I hate it.

As some of you know my mom was on the RRX001 trial, after about five months on Irinotecan, she stopped responding to it. I had originally thought she would be able to switch back to RRX001 to re-resensitize, but come to find out the entire trial is on hold because the bouncing back and forth has not been approved by the FDA and my mom's oncologist says he doesn't know when or even if it will be approved. Ridiculous.

So then my mom goes on Stivarga. Everything is fine and dandy for two week and then Monday she breaks out in a rash. We were told it could be normal, I call to see if there's something they can prescribe for it, am told its best to come in. This morning she sees the dermatologist and turns out it was a very bad reaction that could have been fatal had she continued on this medication. They're doing a biopsy and then deciding if she can continue this at all safely. Ridiculous.

And to top it all off, I'm in class this morning having a lecture on genetics and cancer. Of course my professor starts talking about colon cancer and statistics of efficacy considering KRAS mutations. Didn't really feel like discussing cancer statistics, especially not this morning. The best part, the professor goes on to say that he doesn't think the few months Vectibix and other drugs extend a patient's life is worth the thousands and thousands of dollars it costs to give them those medications after he talks about how healthy he is and has never had a serious medical issue. Took everything I had not to walk out. He's an MD (although not an oncologist) and hearing him talk about money over life is just SO RIDICULOUS.

So much irony, too lol
Mom diagnosed Stage 4 with Liver mets 7/2011
July 11: Xeloda and Avastin
August 13: Irinotecan
June 14: Disease Progression
August 14: SBRT
October 14 - December 14: RRX-001
January - May 15: Irinotecan
May 15: One week Stivarga -- stopped b/c DRESS Syndrome
July 15: Disease progression
July 15: Start Xelox

janderson
Posts: 679
Joined: Tue Mar 27, 2012 11:46 am

Re: So much ridiculousness don't even know where to begin

Postby janderson » Thu May 28, 2015 2:17 pm

I feel you pain and anger. I was getting more pissed off as I kept reading your post. Especially the last part. What the Hell does he care what it cost. It's not his money. 2 months is just a statistic. That means there are also people who benefited from Vectibix for more than 2 months as well. I don't like the statistics of a lot of these drugs either BUT we need as many options as we can get until they can come up with a real solution to controlling the disease.
DX 10-05 stage IV
liver resection 12-05 Folfox1-05 to 7-06
Liver resection 8-07 Folfiri 9-07 to 3-08
Liver resection 12-11
Recurrence 2/7/2014, liver, chestwall mets, 16 rounds chemo
7/3/14, y90 radioembolization, steady shrinkage
12/8/14, cryoablation to liver and chest wall
6/1 to 6/26 SBRT radio surgery
7/2 more cryo ablation to right lung
7/16 lung infection drain tube installed
9/4 chest wall resection to remove 2 ribs

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mstults
Posts: 1327
Joined: Fri Nov 30, 2012 11:23 am

Re: So much ridiculousness don't even know where to begin

Postby mstults » Thu May 28, 2015 3:06 pm

Statistics are useless. They are at least a couple years old, even with the newer drugs. And especially with the newer drugs they are used as a last resort. Most of the users in the studies and early statistics have only days or a few months at the very most. I've been on Vectibix 3 months. Had a scan last week showing progression but my CEA had gone up before switching to Vectibix and my last scan was 5 months before this one. So oncologist says tumors could have grown more and now are shrinking but are still larger than when last scan was done. He always finds a way to put forth the positive. Vectibix is quite expensive but I'll take it as long as the Oncologist says to and insurance approves. And statistics be damned.
Male Age 53. Dx CC with numerous liver mets 6/23/12. Colon res 6/24/12. Started folfox 7/24/12. Added avastin 8/27/12. CT 12/27/12 still showing shrink. Took 17 rounds of FOLFOX. Then 5-FU + Avastin. Switched to Irinotecan for 1 yr. CEA rose to >400. Switched to Vectibix 2/18/15. CEA decreasing. Scans show some growth in liver mets. Lung Mets stable to shrinking.

https://www.facebook.com/michael.stults2/about?ref=home_edit_profile&section=work

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Sleen
Posts: 319
Joined: Tue Jan 14, 2014 7:41 am
Location: Detroit
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Re: So much ridiculousness don't even know where to begin

Postby Sleen » Thu May 28, 2015 6:42 pm

mstults wrote:...statistics be damned.

Yes! Hear hear!

smalltownmess wrote:Took everything I had not to walk out.

I'd shoot the MD a quick email letting him know that his classroom audience could do with a little bedside manner. I'm sorry you had to listen to that. Also very sorry about your Mom's reaction to Stivarga--wow. These meds are scary. :(

Celine
my blog: Cancer Riot

NED since April 2016!
April 2016: lower left lung lobectomy. NED
8 mo. f/u: 1 of 7 tumors progressed.
6 mo. f/u PR confirmed (Jan 2016)
Jul 2015: NIH TIL trial NCT01174121 NCI/NIH Surgery Branch FAQ
Dec 2014 confirmed stage IV w/bilateral lung mets
FOLFOX + Radiation (bladder)
KRAS G12D :: MSS
dx Sep 2013 @47yo: IIIc T4b N2b MX [bladder invasion, 17/21 lymph nodes]

Married 34 yrs. kids: 28, 25, 21, 16, 14
SE Michigan home schooler, unemployed mechanical engineer, and programmer.

JENNJ
Posts: 115
Joined: Tue Feb 17, 2015 8:00 pm

Re: So much ridiculousness don't even know where to begin

Postby JENNJ » Thu May 28, 2015 6:45 pm

hopefully someone that ignorant will never have to find out how condescending it would be to have people put a price tag on their life. I would spend millions (if we had it) to extend my loved one's lives. First class ass.
Katy

debb
Posts: 191
Joined: Sun Dec 21, 2008 9:03 pm
Location: NJ

Re: So much ridiculousness don't even know where to begin

Postby debb » Fri May 29, 2015 12:53 pm

I got the rash from Stivarga too. I was prescribed oral steroids and cream to treat. And I was taken off the Stivarga, because I was participating in a clinical trial to determine Stivarga's use as a 2nd line treatment. My next scan showed shrinkage. If I wasn't part of the trial, my doc would've probably given me a short break to let the rash subside, then he'd lower my dosage. But that wasn't part of the study protocol, so I opted out. No biopsy of rash..it was obviously caused by the drug, and went away in short order.
2008, Stage 3C, age 42, mom of 4
Folfox 9/08-2/09
Met to right ovary, both removed 7/10
HIPEC 8/10
VATS 7/12, right lung
10/14 Stivarga clinical trial
3/15-7/15 Folfiri & avastin
8/16 Folfiri & avastin
Break! 10 months of freedom
1/18 - 4/23 many Folfiri & Avastin
6/23 Clinical trial REGN7075. Progression
8/23 radiation to femurs and L4
9/23 rechallenged Folfox. Allergic reaction at 4th infusion
11/23 will start Bot/Bal

skypup
Posts: 2598
Joined: Mon Dec 17, 2012 12:12 pm

Re: So much ridiculousness don't even know where to begin

Postby skypup » Fri May 29, 2015 1:25 pm

mstults wrote:Statistics are useless.

No, they aren't if you understand what they are and you are of a nature that values the info they contain.

mstults wrote: And statistics be damned.

Absolutely!!!


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