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My father on dovitinib

4 years 4 months ago #46709 by sara.anne
The cancer that your father has is the most common form, and it couldn't get any better than stage 0. However, your father is experiencing what is BAD about this cancer...while it is Stage 0 (which means that it has not gone "anywhere") this cancer tends to come back over and over. It is notorious for this. BCG is what they use when it starts returning, but it isn't always effective in this situation. It is probable that this is why they have gone to a clinical trial of such a drug.

You will find, if you read a bit on this website and Forum, that we are always championing second opinions. We do it so often that it has almost become a joke!
But, seriously, a second opinion would seem very pertinent here; your father has a situation that could become more serious as the tumors continually re-appear, BCG has not been effective, and he is not doing well on the experimental treatment.

He is close enough to NYC to seek a second opinion at Sloan-Kettering, or Boston at Mass General, or Baltimore at Johns Hopkins. There may well be other options that would be better for your father's circumstances. At least he would know what options might exist.

I do understand that it is difficult sometimes when parents do not want to "worry" their children. But you are now entering a medical field and have some knowledge and advice to offer. With the cancer returning, this is not a situation to be ignored.

My thoughts and best wishes are with you.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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4 years 4 months ago #46705 by lwaterfo
Hi Sara,
Thanks for your reply =)
I am not sure..I assumed it was non-invasive because it has not affected any areas beyond the inner bladder layer. I think the name of what he has is "stage 0 non-invasive papillary carcinoma".
He was diagnosed spring 2013 and has had about 4-5 bcg treatments but maybe more..
None of them have been effective in preventing the cancer cell re-growth. The growths he is getting do not seem to be aggressive, but they have recurred consistently even after the bcg treatments..does that maybe sound like a rarer form of the cancer? Also, is bcg the most traditional form of bladder cancer treatment?
I wish I knew more about his situation, but both of my parents choose to keep me in the dark about a lot of things surrounding his cancer. I think it is because they do not want to scare me...
Anyways, he is being treated FoxChaseCC and they seem to be somewhat confident that dovitinib will have an effect. I am just hoping he gets back to his old self again soon..with or without the cancer.

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4 years 4 months ago #46704 by sara.anne
Don't quite understand why your father would be in a clinical trial of dovitinib if his diagnosis was non-invasive bladder cancer. IF his cancer is transitional cell carcinoma (also called urothelial carcinoma) (most common form of bladder cancer) there are very successful treatment options available. I know that dovitinib is being tried in many different types of cancer and I haven't seen anything that indicates that it has been shown to be effective in bladder cancer cases.

If your father's diagnosis is one of the rarer forms of bladder cancer, that might be a different story.

Do you know what the pathological diagnosis is?

Where is he being treated? This might be an excellent time for him to get a second opinion at a different center for bladder cancer treatment. There is a list of such places on our home page....just click on "New Treatment Center Findwer." Or, if you tell us where your father is located, some of our members might have suggestions.

Since your father is in a clinical trial he has the right to withdraw at any time. If the side effects are so uncomfortable, he might consider this and instead go to a more traditional treatment.

Transitional cell carcinoma can be treated very successfully.

Best of luck to you and your family

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
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4 years 4 months ago #46703 by lwaterfo
My father was recently diagnosed with bladder cancer. Not invasive yet but I am afraid of what is to come. I am a pharmacy student at a school 8 hours away from my family. I'm home for the summer now and leaving soon to go back. I fear spending less time with my dad. I don't want to leave and him to get more sick than what he is now.
I also don't like seeing my father weak. Just last week he started a trial drug dovitinib. He has been having bad side effects. He seems so frail and weak and unhappy. It doesnt help that he (and my mother) is retired and doesnt have much to do now. They both seem to be getting increasingly depressed and I feel like no matter what I do I cannot help either of them cope.
I want this drug to work so bad so that my dad can get back to enjoying his life. I also want the side effects to go away so that he can enjoy the last years of his life...He is in his 70s..

Any other members on here with family on dovitinib? Any success stories or coping methods for side effects?

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