Good Info to Have When Considering Clinical Trials
Comments
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metsknolltop said:Nic
When my cancer met to Liver....as I mentioned before, I had ciplatin and 5FU. I mentioned to my oncologist this time around...if it is back in lungs, would he contact Dr. Cathy Eng in Houston and discuss my case with her and see what chemo may work better. I know on another cancer site some patients used other chemos. One was stage 4 and she has been clean for over 5 years, Martha may be familiar with the chemos I talking about....can't remember the names right now.
I pray for everyone on this forum daily. So glad you are doing so well after surgery.
Yes, we need to build up our immune system. Don't know how to do it either. I will look too on the internet.
Sending Blessings of healing.
tory
Tory - My oncologist says my lung mets are "anal cancer" not "squarmous cancer of the lung". Apparently it makes a difference in treatment. I have the impression that the latter is worse than than former in this case.
The standard treatment for anal cancer w/lung mets is cisplatin & 5FU. I have not found any clinical trials currently for ac stage 4.
I will f/u reading the blog of which you speak. I think I read some of it ages ago & it was tediously long.
Thanks for your blessings. Wishing you the same. You are due for another scan?
Nic
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Nicnicotianna said:mets
Tory - My oncologist says my lung mets are "anal cancer" not "squarmous cancer of the lung". Apparently it makes a difference in treatment. I have the impression that the latter is worse than than former in this case.
The standard treatment for anal cancer w/lung mets is cisplatin & 5FU. I have not found any clinical trials currently for ac stage 4.
I will f/u reading the blog of which you speak. I think I read some of it ages ago & it was tediously long.
Thanks for your blessings. Wishing you the same. You are due for another scan?
Nic
This is the blog mentioned above. http://ihavebuttwhat.tumblr.com/
Martha
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Nic....nicotianna said:EGFR & Cetuximab
Hi Katheryn -
Thanks for the prayers & good wishes as well as the info.
Who is/was conducting the clinical trial for Cetuximab? Do you know if your pathology specimen was tested for EGFR before the trial was started?
I think that Cetuximab is considered to be immunotherapy. I am trying to learn more about this.
A research-oriented MD relative thought it would be a good idea to have my path specimen tested for EGFR. My path was not tested for EGFR (epidermal growth factor receptor). My oncologist said that this testing is not standard of care for anal cancer (only lung cancer) & that I would have to pay for it. I will pay.
Nic
Hi, I was in the clinical study in February of 2011. It was conducted by ECOG (Eastern Cooperative Oncology Group) 3205. It was a phase2 trial. I called the researcher that I have contact with to check if the pathology specimen was tested for EGFR and she said it was not but that while that was not standard practice a few years ago it is being done more often now.
I do hope you are finding what you need as the search can be overwhelming.
Katheryn
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Marthamp327 said:knolltop
The woman you are referring to is Michele, a virtual friend of mine. The name of her blog is "I Have Butt What?" Her treatment has been done at MDA and yes, she has had mets to her lung(s). I believe she has had the lung nodule(s) "plucked" out (to use her word), and if memory serves me correctly, she has undergone some chemo and/or radiation for the lung met(s). If you do a Google search, you will find her blog. She is also a blogger on another site that I frequent and post on. Ironically, she and I have discovered that we have a mutual friend in real life, not virtually! It's a small world. Michele is very informed about this disease and is a nurse by profession. I admire her very much because she has spoken up about anal cancer in the public arena and has even written a book. She is a regular poster on the other site.
As for what chemo drugs are used to treat metastatic lung cancer, I'm not sure. I do believe you may be right about the Taxol. Perhaps Carboplatinum as well.
If you cannot find Michele's blog, please let me know. I'll do a search and if I can post a link, I will.
I just edited this post--here's the link. http://ihavebuttwhat.tumblr.com/
Martha
Thank you, Martha for the link to her site.
tory
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Nicnicotianna said:mets
Tory - My oncologist says my lung mets are "anal cancer" not "squarmous cancer of the lung". Apparently it makes a difference in treatment. I have the impression that the latter is worse than than former in this case.
The standard treatment for anal cancer w/lung mets is cisplatin & 5FU. I have not found any clinical trials currently for ac stage 4.
I will f/u reading the blog of which you speak. I think I read some of it ages ago & it was tediously long.
Thanks for your blessings. Wishing you the same. You are due for another scan?
Nic
I will try to go to the link Martha posted and see if I can contact Michelle and ask her if MDA is conducting AC trial.
Just tried to contact her on her blog and could not find a place to contact her....just a place to ask a question which I did. However, I could not leave my email....it would not allow it to happen.
tory
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nicotiannanicotianna said:mets
Tory - My oncologist says my lung mets are "anal cancer" not "squarmous cancer of the lung". Apparently it makes a difference in treatment. I have the impression that the latter is worse than than former in this case.
The standard treatment for anal cancer w/lung mets is cisplatin & 5FU. I have not found any clinical trials currently for ac stage 4.
I will f/u reading the blog of which you speak. I think I read some of it ages ago & it was tediously long.
Thanks for your blessings. Wishing you the same. You are due for another scan?
Nic
Wishing you the best of success on your care, please know I will send some prayers your way right now. Keep us posted on your plan and progress, hoping to hear good news from you soon.
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EGFReihtak said:Nic....
Hi, I was in the clinical study in February of 2011. It was conducted by ECOG (Eastern Cooperative Oncology Group) 3205. It was a phase2 trial. I called the researcher that I have contact with to check if the pathology specimen was tested for EGFR and she said it was not but that while that was not standard practice a few years ago it is being done more often now.
I do hope you are finding what you need as the search can be overwhelming.
Katheryn
Katheryn - Thank you for calling the researcher who was involved in your therapy. This is what I have found. "These tumors tend to express EGFR (epidermal growth factor receptor) at higher levels. It is not approved (FDA) for this clinical indication. Overexpression of EGFR may not be a determinant of response. For example, in colon cancer cetuximab was initially approved for patients with strong IHC staining for EGFR. However, cases were reported with response to patients with negative IHC EGFR staining. It was learned that the issue was not the EGFR but rather KRAS. If KRAS was "mutated" the patient never responded to cetuximab but if KRAS is wildtype, then the response rate to cetuximab was 30%. Any mutation along the signaling pathway would probably negate a favorable effect of cetuximab." So it appears that there is not anything known at this time to predict the response in anal cancer. This is all very technical:( I have decided not to have my path specimen checked for EGFR.
Nic
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Marthamp327 said:knolltop
The woman you are referring to is Michele, a virtual friend of mine. The name of her blog is "I Have Butt What?" Her treatment has been done at MDA and yes, she has had mets to her lung(s). I believe she has had the lung nodule(s) "plucked" out (to use her word), and if memory serves me correctly, she has undergone some chemo and/or radiation for the lung met(s). If you do a Google search, you will find her blog. She is also a blogger on another site that I frequent and post on. Ironically, she and I have discovered that we have a mutual friend in real life, not virtually! It's a small world. Michele is very informed about this disease and is a nurse by profession. I admire her very much because she has spoken up about anal cancer in the public arena and has even written a book. She is a regular poster on the other site.
As for what chemo drugs are used to treat metastatic lung cancer, I'm not sure. I do believe you may be right about the Taxol. Perhaps Carboplatinum as well.
If you cannot find Michele's blog, please let me know. I'll do a search and if I can post a link, I will.
I just edited this post--here's the link. http://ihavebuttwhat.tumblr.com/
Martha
Thanks for the info on Michele's blog. I found it. It's very nice but very long. Will have to read when I am not so anxious. Also thanks for the info on the mushrooms. Turkey Tail mushrooms are supposed to have documented benefits to the immune system. I have the catalog, "Fungi PerfectI", <http://fungi.com> if anyone is interested.
Nic
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Toryknolltop said:Nic
I will try to go to the link Martha posted and see if I can contact Michelle and ask her if MDA is conducting AC trial.
Just tried to contact her on her blog and could not find a place to contact her....just a place to ask a question which I did. However, I could not leave my email....it would not allow it to happen.
tory
Michelle Longabaugh is the butt gal. Her email: <michele-longabaugh@att.net>. She has an interview on You Tube: <https://www.youtube.com/watch?v=C39UHHA2O0>. The video is great but does not give enough details (for us). Her blog is nice but sooo long!
Nic
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Toryknolltop said:Nic
I will try to go to the link Martha posted and see if I can contact Michelle and ask her if MDA is conducting AC trial.
Just tried to contact her on her blog and could not find a place to contact her....just a place to ask a question which I did. However, I could not leave my email....it would not allow it to happen.
tory
Michelle Longabaugh is the butt gal. I have her email. I can give it to you privately (somehow). She has an interview on You Tube: <https://www.youtube.com/watch?v=C39UHHA2O0>. The video is great but does not give enough details (for us). Her blog is nice but sooo long!
Nic
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More clinical trial questions...AZedj said:I was Dx with stage 2-3 anal
I was Dx with stage 2-3 anal cancer no node and no mets 4-2013 and medical friends found clinical trial at NIH. The trial was for a cream that they were hoping would help with the radiation burns. Concept was to save the skin. My MD and medical friends did the research on the chemical compounds in the cream and felt it was a safe bet if I could get into the clinical trial. The mitamycin and 5FU X2 rounds at the first week and week 5 along with 33 rounds of radiation were the standard of care for this type of cancer so nothing there was any different. I had to jump through many hoops to qualify because the restrictions on the trail are very specific. But after much testing I did qualify and received care that was very personalized due to the fact gathering that there were doing. I also volunteered for several other trials that will help others in our shoes by giving snags and blood on scheduled dates. NIH is the gold standard of care for cancer care in this country. My rad and med onc team are NCI people. I met many people along with lots of children with cancer doing trial studies. It is awesome to be cared for by the people who write the rules. Check out the trials studies at NIH.
Hello, AZedj:
Do you live near the NIH? If not, then transportation back and forth must become quite expensive for you. Do they provide lodging while you are there? Again, if not, more expense. If you live at a distance, how were you able to travel there while feeling your worst? Did you travel alone? There were times when I could barely ride to the local radiation machine with my husband driving.
More practical details will be appreciated, too.
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