Urachal Cancer Survivor

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RE: Launching DNA sequencing project and website

by julesgreenb on Fri Jun 26, 2015 11:27 AM

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Glad to hear Sridhar is connected. I really like her. It would be would be great to add a section with links to the literature on Urachal cancer. Or maybe it's there and I missed it, also to have a link to this forum. The site would be a great one stop shop for anyone who has been diagnosed with urachal cancer and for their friends and family. In the end those are the people who will donate money anyway. What kids your vision for the evolution of the site? Julia

RE: Launching DNA sequencing project and website

by julesgreenb on Sat Jun 27, 2015 02:56 PM

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I don't know if you know but there is a discussion thread on Urachal cancer on the BCAN inspire website. Wondering if you want to link directly to that one too. You can't find it easily by searching from the BCAN homepage. https://www.inspire.com/groups/bladder-cancer-advocacy-netwo

RE: Launching DNA sequencing project and website

by vtoole on Sat Jun 27, 2015 04:27 PM

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On Jun 27, 2015 2:56 PM julesgreenb wrote:

I don't know if you know but there is a discussion thread on Urachal cancer on the BCAN inspire website. Wondering if you want to link directly to that one too. You can't find it easily by searching from the BCAN homepage. https://www.inspire.com/groups/bladder-cancer-advocacy-netwo rk/discussion/urachal-cancer-2/?ref=as&asat=264542810"" target="_blank" rel="nofollow">https://www.inspire.com/groups/bladder-cancer-advocacy-netwo target="_blank" rel="nofollow">https://www.inspire.com/groups/bladder-cancer-advocacy-netwo
I,went onto the link you provided Julia but only see about 4 posts from back in 2011.imente re urachal adenocarcinoma in the search box. Have I not found the correct thread?

RE: Launching DNA sequencing project and website

by julesgreenb on Sat Jun 27, 2015 04:41 PM

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On Jun 27, 2015 4:27 PM vtoole wrote:

On Jun 27, 2015 2:56 PM julesgreenb wrote:

I don't know if you know but there is a discussion thread on Urachal cancer on the BCAN inspire website. Wondering if you want to link directly to that one too. You can't find it easily by searching from the BCAN homepage. https://www.inspire.com/groups/bladder-cancer-advocacy-netwo "" target="_blank" rel="nofollow">https://www.inspire.com/groups/bladder-cancer-advocacy-netwo target="_blank" rel="nofollow">https://www.inspire.com/groups/bladder-cancer-advocacy-netwo "" target="_blank" rel="nofollow">https://www.inspire.com/groups/bladder-cancer-advocacy-netwo "" target="_blank" rel="nofollow">https://www.inspire.com/groups/bladder-cancer-advocacy-netwo target="_blank" rel="nofollow">https://www.inspire.com/groups/bladder-cancer-advocacy-netwo target="_blank" rel="nofollow">https://www.inspire.com/groups/bladder-cancer-advocacy-netwo "" target="_blank" rel="nofollow">https://www.inspire.com/groups/bladder-cancer-advocacy-netwo target="_blank" rel="nofollow">https://www.inspire.com/groups/bladder-cancer-advocacy-netwo "" target="_blank" rel="nofollow">https://www.inspire.com/groups/bladder-cancer-advocacy-netwo "" target="_blank" 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I,went onto the link you provided Julia but only see about 4 posts from back in 2011.imente "" target="_blank" rel="nofollow">http://2011.imente " target="_blank" rel="nofollow">2011.imente re urachal adenocarcinoma in the search box. Have I not found the correct thread?
The one I've been involved with started this past September with a few people involved, 18 posts. I posted the new website on it just now and in the past posted our discussion forum.

RE: Launching DNA sequencing project and website

by vtoole on Sat Jun 27, 2015 04:42 PM

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Got it. Found it. Thx. Btw, my husband had to "hold" (stop) the experimental drug, BVD253, as of Thursday night. He was having side effects that were frightening and painful. He was having eye change issues (a noted possible side effect) and sharp burning pains in his abdomen with a feeling of fluid retention in the belly. We are supposed to go back to MDA Monday, to the Center for Targeted Therapy for a check-in/ check up as to what might be happening and reassess the possibility of continuing/discontinuing the treatment. My husband is determined not to continue th drug and simply see a general oncologist here and just abstain from any further treatment. This has been the only possible hope he has been given at MDAnderson. The lung mets have increased in activity on the PET scans and have also entered two mediastinal lymph nodes as of June 11th PET - 2 months after precious PET.

RE: Launching DNA sequencing project and website

by julesgreenb on Sat Jun 27, 2015 04:57 PM

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On Jun 27, 2015 4:42 PM vtoole wrote:

Got it. Found it. Thx. Btw, my husband had to "hold" (stop) the experimental drug, BVD253, as of Thursday night. He was having side effects that were frightening and painful. He was having eye change issues (a noted possible side effect) and sharp burning pains in his abdomen with a feeling of fluid retention in the belly. We are supposed to go back to MDA Monday, to the Center for Targeted Therapy for a check-in/ check up as to what might be happening and reassess the possibility of continuing/discontinuing the treatment. My husband is determined not to continue th drug and simply see a general oncologist here and just abstain from any further treatment. This has been the only possible hope he has been given at MDAnderson. The lung mets have increased in activity on the PET scans and have also entered two mediastinal lymph nodes as of June 11th PET - 2 months after precious PET.
Oh I'm so sorry to hear that V! What a stressful and disappointing turn of events. I don't blame him I have to say. At a certain point you just can't face it any more. Does your husband experience any discomfort from the cancer itself at this point or just from the treatments? Poor guy. I'm bracing for my scan July 9. Scan schedules really do end up shaping your world. I just got back from a week doing yoga in the Bahamas. It was heaven to reconnect with my body in loving way again. I had a couple of experiences of emotional release, one in a pose that opens the heart chakra and the other in a pose for the chakras around the abdominal surgery area. I think i really needed it. I came back really fatigued. I wish i could offer some hope to you. Let's see how my scan goes on the 9th. I'll either be offering hope or in the same boat with you guys. Wish us all luck! Xoxo Julia

RE: Launching DNA sequencing project and website

by PhilA on Sun Jun 28, 2015 10:45 PM

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Hi Julia,

I ran into Dr. Sridhar at the conference on Friday - she is a super lady.

 

With regards to your questions...

- I've tried to put a feed from Google Scholar on the site but cant seem to make it work.  Were you thinking there should be links to specific research reports?  If so, which ones?  (I have a bunch.)

- The site already has a link to BCAN and to Bladder Cancer Canada.  I noticed that your link to the BCAN UC feed only works if you are signed up.  I will make a note of that.  Good suggestion.   

You'll be happy to know that both BCAN and Bladder Cancer Canada have agreed to promotewww.urachalcancer.com .

I also set up a facebook page on urachal cancer that can serve as a message board.

Lastly, check out the Bikus Urachus public group page on Facebook where you can find updates on the BU team and how we are raising awareness on UC.  https://www.facebook.com/#!/groups/bikusurachus/

 

Keep the suggestions coming!

RE: Launching DNA sequencing project and website

by PhilA on Sun Jun 28, 2015 10:47 PM

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Hi Julia,

I ran into Dr. Sridhar at the conference on Friday - she is a super lady.

 

With regards to your questions...

- I've tried to put a feed from Google Scholar on the site but cant seem to make it work.  Were you thinking there should be links to specific research reports?  If so, which ones?  (I have a bunch.)

- The site already has a link to BCAN and to Bladder Cancer Canada.  I noticed that your link to the BCAN UC feed only works if you are signed up.  I will make a note of that.  Good suggestion.   

You'll be happy to know that both BCAN and Bladder Cancer Canada have agreed to promote www.urachalcancer.com .

I also set up a facebook page on urachal cancer that can serve as a message board.

Lastly, check out the Bikus Urachus public group page on Facebook where you can find updates on the BU team and how we are raising awareness on UC.  https://www.facebook.com/#!/groups/bikusurachus/

 

Keep the suggestions coming!

RE: Launching DNA sequencing project and website

by julesgreenb on Sun Jun 28, 2015 11:09 PM

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Hi Phil, How was the conference? Anything else interesting you learned about that could help us? How do I get my tumour into the study? I had the gen mutation test done and my main mutation is p53. But as Sridhar told me that doesn't necessarily mean that the lung Mets I now have will have the same mutations. It's hard to say which publications should be listed but since there aren't that many maybe the most recent. Dr Sridhar has published and there's one I found useful out of Australia about using FOLFOX for Urachal cancer. Right now I'm more focused on alternative treatments but depending on how I do in my next scan in July that could very well change. Maybe I'll make a trip to Montreal and visit. If tough are ever in Toronto let me know. Best, Julia

RE: Launching DNA sequencing project and website

by PhilA on Sun Jun 28, 2015 11:24 PM

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The conference was really good.  I only stayed for the urachal cancer portion.  You can see pics on the Bikus Urachus facebook group page.  One thing that I didnt expect was that my team is putting together clinical guidelines for urachal cancer treatment in canada.  This is really important bc they are driving a discussion amongst all the GU medical oncologists in Canada about the best treatment for UC.  Currently, these guys independently read the literature then go to google and ask their friends.  This will drive collaboration and some real thinking about how to improve treatment for the disease.  It's really awesome!

To get your tumour into the study, ask Dr. Sridhar and she'll take care of it.  I'm sure she'll be the person responsible for getting the study through ethics at PMH.

I'll speak to the advisory board about posting studies on the website.

I hope to be in Toronto this summer and will look you up.

July 9th is the Bikus Urachus team dinner before the Ride to Conquer Cancer on July 11.  You can be sure that the BU team will be thinking about you.

 

Phil

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