Results of latest PET good…but
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Results of latest PET good…but

› Forums › Cutaneous Melanoma Community › Results of latest PET good…but

  • Post
    • September 7, 2012 at 12:10 am
    Mickey n Jo
    Participant

      Again I am writing for my husband. His latest PET scan showed no progression of disease, and a decrease in size of all mets (spleen, lymph nodes,

      mediastinum and subcutaneous) which shows that Zel really does work. The problem we are facing right now is that he feels terrible.  He's

      lost a lot of weight, is very weak and fatigued, has developed a sore on his knee, still has joint pain and nausea. We spoke with the Drs. and

      Again I am writing for my husband. His latest PET scan showed no progression of disease, and a decrease in size of all mets (spleen, lymph nodes,

      mediastinum and subcutaneous) which shows that Zel really does work. The problem we are facing right now is that he feels terrible.  He's

      lost a lot of weight, is very weak and fatigued, has developed a sore on his knee, still has joint pain and nausea. We spoke with the Drs. and

      they feel it would be best to stop the Zel for awhile to try to gain some strength. He also got back the results of the spinal tap and they were

      OK, no infection, so it's possible that his memory problems are either caused by the medication ( although no one else seems to have that

      problem) or by severe anxiety (which is more likely). He has been on Zel since May 2012, started at the highest dose then had it reduced to

      3 pills 2x a day, just recently had it reduced to 2 pills 2x a day. Does anyone know how long you can stay off Zel before starting up again?

      I desperately want him to continue with the medication, but I can't stand seeing him feel so sick. Any info would be appreciated. Thanks.

    Viewing 8 reply threads
    • Replies
        • September 7, 2012 at 12:34 am
        dellriol
        Participant

          I was off two weeks when my liver problems developed. Sorry to hear the side effects have him down so bad. 

          • September 7, 2012 at 12:34 am
          dellriol
          Participant

            I was off two weeks when my liver problems developed. Sorry to hear the side effects have him down so bad. 

            • September 7, 2012 at 12:34 am
            dellriol
            Participant

              I was off two weeks when my liver problems developed. Sorry to hear the side effects have him down so bad. 

              • September 7, 2012 at 12:36 am
              natasha
              Participant

                Hi!

                      I feel so sorry for your husband.

                I want to share stroy of my antie. She did not have melanoma,but stomach cancer.

                Docs found her cancer when it was advanced stage 4 and they said she will live for 2 month and no treatment needed.

                We went for treatment anyway and she lost a lot of weight during treatment ,she lost her memory and become very weak.

                Cancer treatment really can cause all this symtoms.

                But ,after treatment ,she lived 2.5 years ( which is very good in her final stage) ,she got her memory back and even worked as a teacher.

                I understand it is not a best example ,because you husband of course is not so advanced stage ,but I am sure treatment can cause this sympoms ,but my brave auntie finished her medication and lived full life after that.

                All the best and stay brave and positive !

                • September 7, 2012 at 12:36 am
                natasha
                Participant

                  Hi!

                        I feel so sorry for your husband.

                  I want to share stroy of my antie. She did not have melanoma,but stomach cancer.

                  Docs found her cancer when it was advanced stage 4 and they said she will live for 2 month and no treatment needed.

                  We went for treatment anyway and she lost a lot of weight during treatment ,she lost her memory and become very weak.

                  Cancer treatment really can cause all this symtoms.

                  But ,after treatment ,she lived 2.5 years ( which is very good in her final stage) ,she got her memory back and even worked as a teacher.

                  I understand it is not a best example ,because you husband of course is not so advanced stage ,but I am sure treatment can cause this sympoms ,but my brave auntie finished her medication and lived full life after that.

                  All the best and stay brave and positive !

                  • September 7, 2012 at 12:36 am
                  natasha
                  Participant

                    Hi!

                          I feel so sorry for your husband.

                    I want to share stroy of my antie. She did not have melanoma,but stomach cancer.

                    Docs found her cancer when it was advanced stage 4 and they said she will live for 2 month and no treatment needed.

                    We went for treatment anyway and she lost a lot of weight during treatment ,she lost her memory and become very weak.

                    Cancer treatment really can cause all this symtoms.

                    But ,after treatment ,she lived 2.5 years ( which is very good in her final stage) ,she got her memory back and even worked as a teacher.

                    I understand it is not a best example ,because you husband of course is not so advanced stage ,but I am sure treatment can cause this sympoms ,but my brave auntie finished her medication and lived full life after that.

                    All the best and stay brave and positive !

                    • September 8, 2012 at 1:00 am
                    awillett1991
                    Participant
                      You can check my profile – I have been off and on a lot. Mostly I would feel better right away if I stopped before I got too sick. My understanding is that it stays in your system a week or more.

                      My tolerance for being incapacitated by the drug is much lower than your husbands. Yes it bought me time, so my thought was it better be mostly good time. I started in April and it worked 5 mos but just got word I have a bunch of new lymph nodes lighting up. I don’t think there is a lot they have really figured out about Zel. I am switching to IPI (Yervoy).

                      Best of luck to you.

                        • September 8, 2012 at 5:39 pm
                        Mickey n Jo
                        Participant

                          Thank you so much for your replies.  The Drs. agree that my husband should stop the Zel for now and see if he can gain back some strength and weight.  Yervoy was mentioned, but I don't think he could tolerate that right now.  How bad are the side effects of Yervoy and how is it administered?

                          • September 8, 2012 at 5:39 pm
                          Mickey n Jo
                          Participant

                            Thank you so much for your replies.  The Drs. agree that my husband should stop the Zel for now and see if he can gain back some strength and weight.  Yervoy was mentioned, but I don't think he could tolerate that right now.  How bad are the side effects of Yervoy and how is it administered?

                            • September 8, 2012 at 5:39 pm
                            Mickey n Jo
                            Participant

                              Thank you so much for your replies.  The Drs. agree that my husband should stop the Zel for now and see if he can gain back some strength and weight.  Yervoy was mentioned, but I don't think he could tolerate that right now.  How bad are the side effects of Yervoy and how is it administered?

                            • September 8, 2012 at 1:00 am
                            awillett1991
                            Participant
                              You can check my profile – I have been off and on a lot. Mostly I would feel better right away if I stopped before I got too sick. My understanding is that it stays in your system a week or more.

                              My tolerance for being incapacitated by the drug is much lower than your husbands. Yes it bought me time, so my thought was it better be mostly good time. I started in April and it worked 5 mos but just got word I have a bunch of new lymph nodes lighting up. I don’t think there is a lot they have really figured out about Zel. I am switching to IPI (Yervoy).

                              Best of luck to you.

                              • September 8, 2012 at 1:00 am
                              awillett1991
                              Participant
                                You can check my profile – I have been off and on a lot. Mostly I would feel better right away if I stopped before I got too sick. My understanding is that it stays in your system a week or more.

                                My tolerance for being incapacitated by the drug is much lower than your husbands. Yes it bought me time, so my thought was it better be mostly good time. I started in April and it worked 5 mos but just got word I have a bunch of new lymph nodes lighting up. I don’t think there is a lot they have really figured out about Zel. I am switching to IPI (Yervoy).

                                Best of luck to you.

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