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Jess58

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      Jess58
      Participant
        Hi we contacted Moffitt in Florida regarding the below trial posted by Celeste and they said that the trial is on hold. does anyone know if the trial is a go at any of the location as we are willing to travel. we are getting desperate as she has been disqualified for all trials up to now by her concurrent condition of follicular lymphoma.

        The trial we are interested in is

        “Study of the Safety and Tolerability of Urelumab Administered in Combination With Nivolumab in Solid Tumors and B-cell Non-Hodgkins Lymphoma”

        Thanks for any information.

        Jess58
        Participant
          Hi, sorry to hear things are not going your way. My wife is in same boat.

          Stage IV, in lymph nodes and bones.

          Has concurrent follicular lymphoma which has disqualified her from every trial up to now.

          Progressed after 4 rounds ipi and divide.

          Had one dose of keytruda and Dr stopped due to new Mets.

          Now getting radiation for pain.

          After radiation Dr will start her on Abraxane.

          Saw Celeste make recommends regards trials to Paul and am thinking of last one on list also for lymphomas I’ll go back and get name of trial and post it.

          She has no mutations.

          Hopefully she’ll qualify for trial so we have the dilemma of choice which is non-extistant so far.

          Hope abraxane works post one round with keytruda. Was in contact with Dr Davies at MD Anderson whom successfully tested patient with Abraxane and keytruda after profession on ipi and divide, but our insurer won’t cover that combo. I got them to cover Abraxane but it was like pulling teeth.

          All advice is most welcome.

          God bless, keep the faith.

          Jess58
          Participant
            Hi,

            Yes, my wife is treating at Sylvester Comprehensive Cancer Unit at the University of Miami. I checked out the closest NCI affiliate and it’s in Tampa -Moffit. I tried getting my wife in some trials there but the wouldn’t take her.

            Thanks for the advice.

            Jess58
            Participant
              Hi Connie,

              Thank you for the information. I will pass it on to my wife.

              I hope the Abraxane actually reverses some of the progression but will take any positive effect also. So if it just slows it so we buy time for something else to come along then so be it.

              This is such a hardcore illness to deal with and we pray daily to the Lord for help.

              It’s helpful to know that the Abraxane may be easier to deal with side effects wise.

              I wish you of the best of luck with your mother.

              Warm regards

              Jess

              Jess58
              Participant
                PS sorry for the double post don’t know why that’s happening. By the way the doctor said it would be subcutaneous injections and not into the tumor as he does not believe that it’s necessary to go directly in because it’s systematic. But I would have preferred it go into the tumor.

                Jess

                Jess58
                Participant
                  Hi Celeste,

                  Thanks for all the information most kind of you.

                  Got a call from my wife’s doctor today and he said that the MRI showEd new metastasis to two vertebraes. So now he’s talking about radiation to ease the pain and he’s also talking in about adding some chemo. Perhaps a nab-paclitaxel. He also may keep the leukine in there but he’s waiting on insurance approvals for that. I spoke to him about bringing in a follicular lymphoma consultant and he said he had no problems with doing that.

                  So we will be Consulting with the head doctor that’s handling the melanoma treatment and then another physician for the radiation and then another for the follicular lymphoma and mixing and all sorts of drugs, keytruda, leukine, nab-paclitaxel and radiation.

                  I know that they say that you have to be very aggressive with concurrent diseases but this is a lot.

                  We are hanging tough. And positive. We believe you never know when it’s tweaked right and good things start happening.

                  Jess

                  Jess58
                  Participant
                    Hi Celeste,

                    Thanks for all the information most kind of you.

                    Got a call from my wife’s doctor today and he said that the MRI showEd new metastasis to two vertebraes. So now he’s talking about radiation to ease the pain and he’s also talking in about adding some chemo. Perhaps a nab-paclitaxel. He also may keep the leukine in there but he’s waiting on insurance approvals for that. I spoke to him about bringing in a follicular lymphoma consultant and he said he had no problems with doing that.

                    So we will be Consulting with the head doctor that’s handling the melanoma treatment and then another physician for the radiation and then another for the follicular lymphoma and mixing and all sorts of drugs, keytruda, leukine, nab-paclitaxel and radiation.

                    I know that they say that you have to be very aggressive with concurrent diseases but this is a lot.

                    We are hanging tough. And positive. We believe you never know when it’s tweaked right and good things start happening.

                    Jess

                    Jess58
                    Participant
                      PS she also has clear cell features but I’m not sure what that means. Her previous doctor that was treating her lymphoma stressed that I should point that out to the new doctor that would treat the melanoma and I did but he didn’t seem to give it great importance. Any thoughts?
                      Jess58
                      Participant
                        Hi thank you for your kindness in responding so quickly. For a month or so now I have been reading your posts with wonderful information and inspiration for anyone seeking help on this site.

                        Please forgive me as I am getting my feet wet in this process and sorry that I’m posting as anonymous. I am on the site as Jess58.

                        Yes I meant leukine.

                        The doctor said she’d be receiving injections at home and the keytruda will be infused at the hospital facilities. Still don’t know how the injections will be given on her body. I guess the doctor will explain that on the 15th. My wife hopes that they don’t expect me to inject her although I’m willing and capable but she’s concerned with the situs of the injection and is not thrilled with me having to inject her visible tumors. She’s also concerned with the pain that would be involved with an injection at the tumor site but I tell her if that’s what it takes then that’s what it takes.

                        Do you know if they use topical anesthetics or do they do it cold turkey? This is all so new and I feel like we’re playing catch-up.

                        I don’t know if a nurse comes to the house and injects her. I don’t have a clue all I know is that the doctor said daily injections at home.

                        Yes I read the same article about the CD 10 expression and how it fights to keep the melanoma alive and progressing. I also read that researches indicate that that expression should serve as a Target and that perhaps a cleavable peptide prodrug is the way to go with those expressions. One such drug I believe it’s called doxorubicin.

                        She has follicular lymphoma too and I know that they use rituxan which is a prodrug but her doctor told us that that targets the cd20 expression which she does not have.

                        Hopefully this new combination will be a success but like to have a plan C&D in the works.

                        Another doctor indicated a good second line would be a abraxene which is a nab-paclitaxel chemo drug.

                        Let me just say this is one scary disease.

                        Her lymph nodes swell up then they go down. She has pain roving all over her back, on her neck under her arm and even in her groin. It just jumps around all the time and in no one fixed place.

                        She also had nausea which has gotten much better now, fevers which I’ve gotten better now ,chills which I’ve gotten better, and night sweats better now, and bloating. Some vomiting. But no diarrhea thank God. No skin rashes either.

                        We stay positive and have great faith that God will help our family.

                        I am so glad I found this site as it is so helpful and full of support and those that contribute do a wonderful thing to help others in need. To all those out there fight on.

                        I am trying to digestion comprehend the wonderful information that you supplied to me and again thank you for it.

                        Any information on the peptide prodrug and cd10 expression would be appreciated as well as any information on how addressing her follicular lymphoma,b cell might help with the melanoma.

                        Jess58
                        Participant
                          Hi thank you for your kindness in responding so quickly. For a month or so now I have been reading your posts with wonderful information and inspiration for anyone seeking help on this site.

                          Please forgive me as I am getting my feet wet in this process and sorry that I’m posting as anonymous. I am on the site as Jess58.

                          Yes I meant leukine.

                          The doctor said she’d be receiving injections at home and the keytruda will be infused at the hospital facilities. Still don’t know how the injections will be given on her body. I guess the doctor will explain that on the 15th. My wife hopes that they don’t expect me to inject her although I’m willing and capable but she’s concerned with the situs of the injection and is not thrilled with me having to inject her visible tumors. She’s also concerned with the pain that would be involved with an injection at the tumor site but I tell her if that’s what it takes then that’s what it takes.

                          Do you know if they use topical anesthetics or do they do it cold turkey? This is all so new and I feel like we’re playing catch-up.

                          I don’t know if a nurse comes to the house and injects her. I don’t have a clue all I know is that the doctor said daily injections at home.

                          Yes I read the same article about the CD 10 expression and how it fights to keep the melanoma alive and progressing. I also read that researches indicate that that expression should serve as a Target and that perhaps a cleavable peptide prodrug is the way to go with those expressions. One such drug I believe it’s called doxorubicin.

                          She has follicular lymphoma too and I know that they use rituxan which is a prodrug but her doctor told us that that targets the cd20 expression which she does not have.

                          Hopefully this new combination will be a success but like to have a plan C&D in the works.

                          Another doctor indicated a good second line would be a abraxene which is a nab-paclitaxel chemo drug.

                          Let me just say this is one scary disease.

                          Her lymph nodes swell up then they go down. She has pain roving all over her back, on her neck under her arm and even in her groin. It just jumps around all the time and in no one fixed place.

                          She also had nausea which has gotten much better now, fevers which I’ve gotten better now ,chills which I’ve gotten better, and night sweats better now, and bloating. Some vomiting. But no diarrhea thank God. No skin rashes either.

                          We stay positive and have great faith that God will help our family.

                          I am so glad I found this site as it is so helpful and full of support and those that contribute do a wonderful thing to help others in need. To all those out there fight on.

                          I am trying to digestion comprehend the wonderful information that you supplied to me and again thank you for it.

                          Any information on the peptide prodrug and cd10 expression would be appreciated as well as any information on how addressing her follicular lymphoma,b cell might help with the melanoma.

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