UCSF 2nd Opinion

Cazz
Cazz Member Posts: 106
in Anal Cancer #1

I went for a 2nd opinion yesterday to the GI Oncology Dept - not the Anal Cancer Clinic, I'm not sure why, except that the Anal clinic has a 4 month wait for a new consult. The doctor I saw told me pretty much what my own oncologist has told me and, very disappointingly, only pointed to the standard treatment for metastatic anal cancer, which is Cisplatin with 5-FU.  Well, seeing as my two liver tumors grew merrily all the time I was being treated initially with Mitomycin and 5-FU, I said I didn't want to put myself through the misery of more 5-FU with very little chance of it helping.  She sympathized but offered no alternatives.  She did encourage me to look for clinical trials as my stage iv anal cancer and apparent resistance to 5-FU indicates that I will be lucky to be around in two years without something new.

While we were talking, she mentioned that the ASCO (American Society of Clinical Oncology) annual meeting is at the end of May and for the first time in over ten years there will be three presentations on anal cancer trials.  She said that she has no foreknowledge of what they will say, and couldn't tell me if she did, but she strongly hinted that she expected there to be some new developments that might help us all.  I think one of the presenters may be Dr Johanna Bendell who has recently completed a trial in Nashville, TN.  Do any of you know anything about this?

One good outcome was that when I reported back to my oncologist on what UCSF had said, he readily agreed to help me find a suitable clinical trial if there is one, and said he would check with more knowledgeable colleagues about treatment options outside the standard protocols.  It was as if he had been holding back to see if UCSF had any better ideas and now that they didn't offer anything he is free to be more creative.  I hope so as I really feel that my chances for even medium-term survival are not very good with current treatment.

So, if any of you happen to know of any suitable trials anywhere in the country, please let me know.  I have been to the NCI website but there are only a few for anal cancer and I don't qualify for some of them.  It seems that most big cancer hospitals do run trials but sometimes the anal cancer is included in such categories as "solid tumor", making it difficult to find.

Carol

Comments

  • mp327
    mp327 Member Posts: 4,440 Member
    #2
    Cazz

    I'm sorry that your visit to UCSF was disappointing.  How I wish you had gotten into the Anal Dysplagia Clinic to see Dr. Michael Berry.  If I were in your situation, I would definitely be securing an appt. with Dr. Catherine Eng at MD Anderson in Houston.  She treats lots of cases of metastatic anal cancer and is also up on current clinical trials that might be available to you.  I recently met her at a conference of the International Anal Dysplasia Society and she indicated at that time that new treatments for anal cancer may be on the horizon, just as this oncologist at UCSF told you.  I think we will all be waiting anxiously to hear more about that.  Please contact MDA and see if there is any chance of seeing Dr. Eng or if they can give you any info on clinical trials that you might qualify for.  I wish you all the very best.  Please keep us posted.

    Martha

  • nicotianna
    nicotianna Member Posts: 209
    #3
    clinical trials for stage IV AC

    Carol - Cathy Eng at MD Anderson will be conducting a trial for recurrent cancer w/a drug called nivolumab in June.  It is an immunotherapy drug (hot in research now).  It is also called anti-PD-1 human monoclonal antibody.  There are other names for it.  It is listed on the NCI site: <clinicaltrials.gov> Identifier: NCT02314169

    I do not qualify for it:(

    I am interested in clinical trials as well.

    I hope this info is helpful.  Wishing you a cure!

    Nic

  • Cazz
    Cazz Member Posts: 106
    #4
    nicotianna said:

    clinical trials for stage IV AC

    Carol - Cathy Eng at MD Anderson will be conducting a trial for recurrent cancer w/a drug called nivolumab in June.  It is an immunotherapy drug (hot in research now).  It is also called anti-PD-1 human monoclonal antibody.  There are other names for it.  It is listed on the NCI site: <clinicaltrials.gov> Identifier: NCT02314169

    I do not qualify for it:(

    I am interested in clinical trials as well.

    I hope this info is helpful.  Wishing you a cure!

    Nic

    Trial

    Thanks for the information, Nic, I hadn't realized that nivolumab was an immunotherapy drug.  I had seen that trial and passed over it because I really want to try the immunotherapy treatment.  I'm sorry you didn't qualify for this one, but won't they consider you for others?  I have an application in at MD Anderson and also at NCI in Bethesda and my oncologist is faxing over all my records.  I think that they then look them over and they tell me what I qualify for.  I just sent a vial of blood to NCI so that they can test my HLA (human lymphocyte antigen) whatever that may be, but it needs to be exactly what they are looking for, so I am keeping my fingers crossed.  One would think it should be pretty straightforward "you've got metastatic anal cancer and chemo doesn't seem to be working, so come on down!", sadly, its not that easy. 

    let me know if you get in somewhere as I would love to follow your progress and one day read those magic letters: NED!

  • nicotianna
    nicotianna Member Posts: 209
    #5
    Cazz said:

    Trial

    Thanks for the information, Nic, I hadn't realized that nivolumab was an immunotherapy drug.  I had seen that trial and passed over it because I really want to try the immunotherapy treatment.  I'm sorry you didn't qualify for this one, but won't they consider you for others?  I have an application in at MD Anderson and also at NCI in Bethesda and my oncologist is faxing over all my records.  I think that they then look them over and they tell me what I qualify for.  I just sent a vial of blood to NCI so that they can test my HLA (human lymphocyte antigen) whatever that may be, but it needs to be exactly what they are looking for, so I am keeping my fingers crossed.  One would think it should be pretty straightforward "you've got metastatic anal cancer and chemo doesn't seem to be working, so come on down!", sadly, its not that easy. 

    let me know if you get in somewhere as I would love to follow your progress and one day read those magic letters: NED!

    Trial

    Carol - How did you contact MD Anderson & NCI?  Did you go to their website, email or call on the phone?

    I emailed Cathy Eng about the nivolumab trial & got a personal email right back.  The oncologist here communicated with her by email, &, I did not qualify.  I sent her an email asking for a recommendation to see her or someone else.  No response!

    Nic

     

  • Cazz
    Cazz Member Posts: 106
    #6
    nicotianna said:

    Trial

    Carol - How did you contact MD Anderson & NCI?  Did you go to their website, email or call on the phone?

    I emailed Cathy Eng about the nivolumab trial & got a personal email right back.  The oncologist here communicated with her by email, &, I did not qualify.  I sent her an email asking for a recommendation to see her or someone else.  No response!

    Nic

     

    Trials

    Hi Nic,

    I spent a lot of time on the internet and printed out the top three clinical trials that I thought looked best and that I might qualify for.  I gave them to my oncologist who then contacted NCI and MDA.  Both institutions phoned me right away and asked a bunch of questions to set up a new patient account for me.  My onc's office has now to fax over to both all of my records, and NCI wanted the blood and tissue (not sure if there is any left, my onc sent it to Foundation One for testing).  Then, my understanding is that once they have everything, they will review my case and they will decide whether or not I qualify for any of the trials and if so, they will contact me to come in and interview.  Hopefully it won't take too long.

    I'm sorry you did not qualify for that particular trial, but there seem to be others using nivolumab, maybe their qualifiers are different, who the heck knows what anti-PDs or CTLA-4 are anyway?

    I just got off the phone with the new patient office at MDA, you could try calling them directly and explaining what you want and they can tell you how to proceed.  They were very nice.  Phone number is 713-792-0266.

    Good luck and let me know if you come across anything else interesting.  I saw one at Baylor that looks promising but its not yet active and then would be phase 1 - figuring out the right dose - NCT02379520.  Maybe one for later.

    Carol

  • nicotianna
    nicotianna Member Posts: 209
    #7
    Cazz said:

    Trials

    Hi Nic,

    I spent a lot of time on the internet and printed out the top three clinical trials that I thought looked best and that I might qualify for.  I gave them to my oncologist who then contacted NCI and MDA.  Both institutions phoned me right away and asked a bunch of questions to set up a new patient account for me.  My onc's office has now to fax over to both all of my records, and NCI wanted the blood and tissue (not sure if there is any left, my onc sent it to Foundation One for testing).  Then, my understanding is that once they have everything, they will review my case and they will decide whether or not I qualify for any of the trials and if so, they will contact me to come in and interview.  Hopefully it won't take too long.

    I'm sorry you did not qualify for that particular trial, but there seem to be others using nivolumab, maybe their qualifiers are different, who the heck knows what anti-PDs or CTLA-4 are anyway?

    I just got off the phone with the new patient office at MDA, you could try calling them directly and explaining what you want and they can tell you how to proceed.  They were very nice.  Phone number is 713-792-0266.

    Good luck and let me know if you come across anything else interesting.  I saw one at Baylor that looks promising but its not yet active and then would be phase 1 - figuring out the right dose - NCT02379520.  Maybe one for later.

    Carol

    Trials

    Thanks Carol!  I really appreciate all the info.  I will keep you posted about me.  Please do the same about you:)

    Nic

  • Ouch_Ouch_Ouch
    Ouch_Ouch_Ouch Member Posts: 508 Member
    #8
    A study I saw.....

    I missed what must have been a previous thread that explained your background, so excuse me if I misinterprete you. It sounds like you may be having a recurrence of anal cancer - is that right? If so, here's a study that you may want to consider.

    Sloane-Kettering is running a study for people with recurrent anal cancer: "Patients must either not want or be able to have major cancer surgery."

    http://www.mskcc.org/cancer-care/trial/14-104

    If I've put my foot into it, I'm sorry.

  • nicotianna
    nicotianna Member Posts: 209
    #9
    Ouch_Ouch_Ouch said:

    A study I saw.....

    I missed what must have been a previous thread that explained your background, so excuse me if I misinterprete you. It sounds like you may be having a recurrence of anal cancer - is that right? If so, here's a study that you may want to consider.

    Sloane-Kettering is running a study for people with recurrent anal cancer: "Patients must either not want or be able to have major cancer surgery."

    http://www.mskcc.org/cancer-care/trial/14-104

    If I've put my foot into it, I'm sorry.

    Trials

    Ouch - Thank you for the info on the MSK trial.  It's good to know. Not sure I need it although my PET scan in lighting up in or near the vagina.  I have lung mets.  I plan to start chemo & may be eligible for Cathy Eng's clinical trial w/nivolumab at a later date.  

    Nic

  • Cazz
    Cazz Member Posts: 106
    #10
    Ouch_Ouch_Ouch said:

    A study I saw.....

    I missed what must have been a previous thread that explained your background, so excuse me if I misinterprete you. It sounds like you may be having a recurrence of anal cancer - is that right? If so, here's a study that you may want to consider.

    Sloane-Kettering is running a study for people with recurrent anal cancer: "Patients must either not want or be able to have major cancer surgery."

    http://www.mskcc.org/cancer-care/trial/14-104

    If I've put my foot into it, I'm sorry.

    No foot too big!

    After everything all of us have been through with this wretched disease, I think it would be pretty darn difficult to offend anyone, especially with an offer to help!  I was diagnosed stage iv in August 2014 and while my anal cancer and a met on the hip bone both disappeared after initial chemo/radiation, the mets on my liver kept on growing merrily all through it and it didn't kill the lung met that I had removed in December.  My onc says next round of chemo "should" help, but I am trying to get into immunotherapy clinical trials while I am still relatively healthy as I don't really feel that more chemo will do it for me.  My onc is helping me with applying for trials, but I am really afraid that if the immunotherapy doesn't work for me, I won't be around next year.

    I will check out the mskcc link you posted - thank you for it, I need all the help I can get!

  • Ouch_Ouch_Ouch
    Ouch_Ouch_Ouch Member Posts: 508 Member
    #11
    Cazz said:

    No foot too big!

    After everything all of us have been through with this wretched disease, I think it would be pretty darn difficult to offend anyone, especially with an offer to help!  I was diagnosed stage iv in August 2014 and while my anal cancer and a met on the hip bone both disappeared after initial chemo/radiation, the mets on my liver kept on growing merrily all through it and it didn't kill the lung met that I had removed in December.  My onc says next round of chemo "should" help, but I am trying to get into immunotherapy clinical trials while I am still relatively healthy as I don't really feel that more chemo will do it for me.  My onc is helping me with applying for trials, but I am really afraid that if the immunotherapy doesn't work for me, I won't be around next year.

    I will check out the mskcc link you posted - thank you for it, I need all the help I can get!

    Do it.

    Calling them can't hurt at all.

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