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Update & 3 Dr visits and questions about Stivarga...need info

KarenMG's picture
KarenMG
Posts: 72
Joined: Jun 2017

This is all boring and routine stuff I guess but I did see my Oncologist and it went fairly well. He had a medical student with him, maybe that's why he was more informative and friendly. Who knows. He had spoken with the Interventional radiologist that just did my second Y90. So they chatted but he really didn't tell me what exactly they decided about my prognosis. It's been exactly 4 weeks since the Y90, and I am still trying to recouperate from that. Since then I've had consistent pain in the right side of my liver that can be a sharp pain or barerly there and sometimes takes my breath for a second. He palpated my side but didn't feel it, like it was getting bigger so that's good. I sleep with a heating pad over it and that seems to help. Still seem to be super fatigued.

So oncologist thought that I should take a break from liver procedures and the possible TACe would definitely be the last one. He talked to me about starting Stivarga, the oral targeted therapy. I went to talk to the pharmacist about it, the side effects didn't sound too hideous, just like a lot of traditional chemo. Except seems like there is a chance more of awful skin diseases like hand and foot...also Steven Johnsons syndrome. I wouldn't know anything about that if I had not seen a patient with that once. It is fairly awful, I just don't know what the likelihood of getting those would be. The Cancer center helped me to get the drug from the manufacturer for free which is amazing, it would have been out of reach for sure...$1837 a month!!!

I did get the drug delivered, and the paper work that came with it said in all caps...WARNING-this drug can cause liver failure which can be fatal. Also fatal "holes" in your GI tract! Now what I want to know is why this was not even mentioned by the cancer center pharmacist? Anyhow, after I read that I'm pretty sure that I am NOT going to even try to take it. I am not healed or recovered from the Y90's yet. I do plan to talk to that pharmacist again about it.

I still have low appetite, nausea and stomach pain. So, I cannot fathom starting a medication in my current condition. I read on this site a couple of people having serious side effects from Stivarga.

Anyone else have experience with it and most important is did it work at all? Please, I am really needing to know.

Also had post procedure visit with Interventional radiologist that took the wonderful doctor's place. He wasn't very informative but said he wanted to schedule a 2 month post procedure scan. So that was pretty much it.

Third doctor visit was a urogynecologist. My bladder is causing a lot of problems, evidently the doc said that radiation therapy can do "strange" things to bladders. I have lost a good bit of control over it right now, but things are not bad as I thought. She was a wonderful doctor and is sending me to physical therapy for pelvic floor strengthening and a med to try. If that doesn't work, there is an option of botox. I hope something works is all I can say. I'm so glad I got to see her!

Thanks in advance for any help anyone can give me about my situation. I do think my doc avoids the issue of any kind of prognosis but since my CEA has jumped to 354, I don't think it's looking all that sunny. Sorry I can't be more positive, I guess time will tell. I am still seeing the therapist and she is looking into Pastoral care for me. I just try to keep going and pushing myself to thrive. I eat fairly well and still plan to finish all that dental work.

Let me know your thoughts...

Love y'all,

Karen

 

 

 

feckcancer
Posts: 41
Joined: Jun 2018

Hey, I have been thinking of you & wondering if you got your kitten? & if your family is treating you okay & if you are okay. Sorry I can't answer any of your questions, just wanted to say hello

KarenMG's picture
KarenMG
Posts: 72
Joined: Jun 2017

Thanks for asking. I tried to get a kitten but she was traumatized from being abandoned plus used to be around 20 cats. She was homesick I guess and cried all the time, tore up stuff and scratched the furniture so...maybe next time I will just get start with a baby kitten. It was worth a try!

I just realized that I still didn't have any energy to do all the work required. She was a beautiful Calico though, fat cat. Ha ha.

I'm doing about the same, same old same old.

Hope you are doing ok.

Hugs, Karen

Annabelle41415's picture
Annabelle41415
Posts: 5733
Joined: Feb 2009

I'm sorry that I'm not able to give your any information, but wanted to let you know that you're always being thought of.  Glad you are still going through therapy.  Sorry the cat didn't work out.  Animals can be a lot of work but hopefully you can try again soon.

Kim

KarenMG's picture
KarenMG
Posts: 72
Joined: Jun 2017

Thanks Kim,

I appreciate your support truly! If and when I feel a bit better, I would like to try getting a baby kitten. The one I got was big and a bit aggressive. It was beautiful for sure. I've always started with a kitten though. Hope you are doing well!

Butt
Posts: 85
Joined: May 2018

How long have you been in treatments? Did you have Avastin?

KarenMG's picture
KarenMG
Posts: 72
Joined: Jun 2017

I never had Avastin, I had 5FU, Oxalaplatin-2 doses, and Leucovorin, that's it. Last treatment was November '17.

Chemo didn't help me a lot for some reason. I have had 3 treatments on my liver. An ablation and 2 Y90 treatments. I feel sort of "done". Like stick a fork in me, so my ambition to take a rough oral chemo therapy drug is very, very low.

Someone will have to do some fancy talking to convince me to take the Stivarga!

Hope you are doing well...

Karen

Butt
Posts: 85
Joined: May 2018

Avastin is a good one and it is not chemo. Why no one offered Avastin because it is an automatic protocol for stage 4 in the US and Europe. Is the insurance company acting up? Did you have the scan after 2 treatments that showed Folfox was not working? Why not Folfiri? My oncologist told me that he was very dissapointed with results of stivagra on his patients. 

Butt
Posts: 85
Joined: May 2018

Where are your Mets? If liver only are you respectable?

KarenMG's picture
KarenMG
Posts: 72
Joined: Jun 2017

I don't have any clue as to why he never prescribed Avastin or the Folfiri. My oncologist is supposedly one of the "smart ones", he is the director or head of the Cancer center for a large hospital. He doesn't seem to like to be questioned, he's not arrogant but none the less...

My mets is to the liver. I'm not sure what you mean exactly about being respectful. I'm glad you told me this and I think I read that the results with Stivarga were not that great so to take a drug that could be deadly, causing liver failure and perforation of the GI tract which could definitely could cause serious problems.

Like I said, I'm still struggling to recouperate from the Y90's and nauseated daily so I cannot fathom starting a drug that will make me sicker.

Thanks Butt for your thoughts. I truly appreciate it.

Karen

Butt
Posts: 85
Joined: May 2018

Typed from my phone and meant resectable  I think it is definitely a time for the second opinion.....Not sure on your insurance but maybe a time to travel to MD Anderson or Sloan Kettering.  Something looks too fishy in this treatment approach.

KarenMG's picture
KarenMG
Posts: 72
Joined: Jun 2017

Thanks Butt, I am at a loss right now as to what to do. I wrote a bunch of nonsense at 4 am but I deleted it.

Just frustrating.

Butt
Posts: 85
Joined: May 2018

Not sure where you live. There may be some large hospitals where you can get the second opinion. May be a research university R1 level that has oncology department. Perhaps just a good oncologist in the area for the second opinion. Maybe you can even change oncologists. Not sure how big is you area. How far are you from the major city? A surgeon who dies licer surgeries is the one who makes a call on resection. Not oncologist espesially  as appears to me marginally competent. Butt.

KarenMG's picture
KarenMG
Posts: 72
Joined: Jun 2017

Butt, I appreciate the info but Ft Myers Fla is 10 and a half hour drive. I am taking a break right now recovering from the last Y90 but I will keep him in mind.

Thanks for the referral.

Karen

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