got 2nd and 3rd opinions

optimist

I have just finished getting my second and third second opinions. This doctor said that my original oncologist gave me a 5 instead of a 10 dose of Avastin. Therefore, he doesn't feel that I failed Avastin and it is clear that I didn't fail oxaliplatin. He feels that I should do Xelox with Avastin next. He feels that xeloda should not give me the bad headaches that I got with a bollus of 5fu. He also wants me to get a hepatic pump.
My third opinion comes from a radiological oncologist in Rochester. He feels that I am a candidate for focal radiation of my liver. I am going to fly up there for a consultation. After that, I would have to stay there to get 10 treatments. The only question I have is whether I can be on chemo while taking these treatments.

After these opinions, it is clear to me that I must leave my original oncologist. I feel that she provided me with good care while I was on the first line chemotherapy. However, I feel that now that things are getting tough, she is out of options for me. I feel that my discussions with her have centered around her ego instead of my disease. It is great seeing that there are still options out there and I know that I have to pursue them.

If anyone knows about any of these treatments, I would love your feedback. I would also like to know if anyone has had experiences in switching their oncologists.

taraHK

I don't have experience with the treatments you are now considering but I want to say how happy I am that you sought out these 2nd and 3rd opinions -- it is not an easy thing to do, because most of us develop a close bond with our oncologist/doctors. Also, I am thrilled that these 2nd and 3rd opinion docs are offering you viable options -- All the best, Tara

oneagleswings

Hi- I am also not sure whether you can have chemo with focal radiation- we looked into a trial with srt radiation to liver and the protocol was a 2 week break off chemo but that was for a Canadian trial...I am so glad you have other options- do you have other mets in addition to liver or only liver (my husband is on folfiri and avastin for liver and lung mets.
Bev

foxy

Hi, you have all my prayers and very best wishes, you are always in my thoughts, the very best of luck to you, love Virginia.

Moesimo

I wsih you all the best as you continue on to conquer the beast. Don't worry about the first onc. This is your life you are talking about. You must go with the doc that will increase your fight and survivial.

Maureen

optimist

oneagleswings said:

Hi- I am also not sure whether you can have chemo with focal radiation- we looked into a trial with srt radiation to liver and the protocol was a 2 week break off chemo but that was for a Canadian trial...I am so glad you have other options- do you have other mets in addition to liver or only liver (my husband is on folfiri and avastin for liver and lung mets.
Bev

Thanks for responding. I have six liver mets and a bunch of peritoneal nodes. My lung scan showed 2, 3mm nodules that were new. They felt that 3mm was too small to call a met, however, it could develop into one.

optimist

foxy said:

Hi, you have all my prayers and very best wishes, you are always in my thoughts, the very best of luck to you, love Virginia.

Thank you so much for your kind wishes. Wishing you the best! Have a great holiday!

jsabol

I responded to your earlier post before seeing this one. It sounds like these specialists are working from a much broader knowledge base than your first one...dump her! Any time it feels like a patient's concern is the doc's ego, the wrong person is getting the special treatment!
Do any of your specialists have a recommendation for a new onc? Clearly you need someone who is able to manage this next line of chemo, and you may be right that your onc is out of her league.
Hope the plan falls into place; it sounds like you are in good hands. Continued good vibes coming your way, Judy
P.S. Kerry is one person who can speak to the advantage of switching oncs; her first one did not agree that she had a palpable neck node. If Kerry hadn't insisted on further workup, the node would have not been diagnosed!

Betsydoglover

So glad to hear that 2nd and 3rd opinions are much more hopeful. That is great news for you and a great lesson for all of us. I'm very attached to my oncologist now and I feel she is really working on my behalf, but if I ever see evidence to the contrary, I will remember your story and seek other advice.

I can tell you that I have tolerated Xeloda well (and Avastin). Initially I was on 2000mg twice a day - after 4 cycles I developed a small amount of peeling skin and the doctor reduced my Xeloda to 1500mg twice a day. That took care of that problem, but also made me feel better (no more diarrhea and less nausea - although nausea never was really bad). So hopefully you can tolerate this better than the previous treatment.

Good luck.

Betsy

spongebob

Optimist -

It is good to see you taking such an active role in your treatment and exploring ALL of your options.

I always stress to people that your oncologist works for YOU. Not the other way around. They aren't your boss and if they don't do a satisfactory job for you, fire them. That's how business works.

You are doing the absolute right thing.

Talk to your rad onc about doing hem-chem and rad-chem at the same time. That's an awful strain on your body - sometimes the cure can be worse than the affliction!

Be well and have a great new year.

- SpongeBob