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Update post chemotherapy

Forums General Melanoma Community Update post chemotherapy

  • Post
    gabsound
    Participant
      Hi all,

      I finished up 4 rounds of Abraxane, Avastin and Carboplatin and had scans last Friday. After my fist tretment I saw a soft tissue tumor on my back disappear. Another lesion on my arm went way down by the third treatment, but after the 4 th started growing again. It Is now quite large and uncomfortable. . The lesion on my back is growing back as well. The lesions in my liver I don’t think are growing like the arm, or I would be in some serious pain. My bone mets in the spine are bothering me off and on. I started on a fentanyl patch and that is giving me less problems than the MS Contin. Such a balancing act, managing pain and the side effects from the pain meds ( nausea, constipation, sleepiness and for me anxiety).

      Pet scan results show mixed response with liver and lungs looking better, but increase in a lot of the lymph nodes, soft tissue lesion in arm and thigh quite large as well as bones and buttocks region.

      Brain MRI shows multiple small lesions in the cerebellar and cerebral hemispheres as well as a 19 mm lesion in the left occipital lobe. Devastating news!!

      I had a good cry with my husband. We continued today with another chemo treatment which had the dose increased as it is helping some of the lesions.

      Plan will be to meet with the radiation Oncologist and get going on treatment for the brain mets. My oncologist wants to start me on MEK inhibitor, hopefully it will be approved soon. He is checking on a trial, but I think brain mets exclude you from most trials. He will attend ASCO next week and hopefully there may be other options.

      I am so thankful for all of you on this board. It really does help to have fellow warriors going through this together.

      Praying for all of us, and let’s keep moving forward .

      Julie

      I was diagnosed Jan 2011 stage 3. I hoped not to keep progressing like I am, but am so glad for the time I have had with my family and friends. I pray the quality of my life will remain good. Brain wise I think I am asymptotic I feel for my husband who gets all this news and has to support me. He does such a great job. I love him, and am so happy to have him in my life. My daughter will graduate from high school this June. I’m happy to be here for that as well.

    Viewing 26 reply threads
    • Replies
        bikerwifee
        Participant
          Julie i have been thinking of you. Sorry your going through such a rough time but you are not alone abaraxene worked for us only a short time. The 32 mets that were treated are dead or dying but have seven tiny new one. That pretty much kicked us out of trials also. we go to drtomo not sure if we are moving on to temador or if we are going on hospice. Lynn has became very weak and run down.

          It was so great to see your post I will continue to pray for you. Best of luck my warrior friend. Sending you lots of love and hugs. Ive cried till i became sick today.

          bikerwifee
          Participant
            Julie i have been thinking of you. Sorry your going through such a rough time but you are not alone abaraxene worked for us only a short time. The 32 mets that were treated are dead or dying but have seven tiny new one. That pretty much kicked us out of trials also. we go to drtomo not sure if we are moving on to temador or if we are going on hospice. Lynn has became very weak and run down.

            It was so great to see your post I will continue to pray for you. Best of luck my warrior friend. Sending you lots of love and hugs. Ive cried till i became sick today.

            bikerwifee
            Participant
              Julie i have been thinking of you. Sorry your going through such a rough time but you are not alone abaraxene worked for us only a short time. The 32 mets that were treated are dead or dying but have seven tiny new one. That pretty much kicked us out of trials also. we go to drtomo not sure if we are moving on to temador or if we are going on hospice. Lynn has became very weak and run down.

              It was so great to see your post I will continue to pray for you. Best of luck my warrior friend. Sending you lots of love and hugs. Ive cried till i became sick today.

              bikerwifee
              Participant
                Julie i have been thinking of you. Sorry your going through such a rough time but you are not alone abaraxene worked for us only a short time. The 32 mets that were treated are dead or dying but have seven tiny new one. That pretty much kicked us out of trials also. we go to drtomo not sure if we are moving on to temador or if we are going on hospice. Lynn has became very weak and run down.

                It was so great to see your post I will continue to pray for you. Best of luck my warrior friend. Sending you lots of love and hugs. Ive cried till i became sick today.

                bikerwifee
                Participant
                  Julie i have been thinking of you. Sorry your going through such a rough time but you are not alone abaraxene worked for us only a short time. The 32 mets that were treated are dead or dying but have seven tiny new one. That pretty much kicked us out of trials also. we go to drtomo not sure if we are moving on to temador or if we are going on hospice. Lynn has became very weak and run down.

                  It was so great to see your post I will continue to pray for you. Best of luck my warrior friend. Sending you lots of love and hugs. Ive cried till i became sick today.

                  bikerwifee
                  Participant
                    Julie i have been thinking of you. Sorry your going through such a rough time but you are not alone abaraxene worked for us only a short time. The 32 mets that were treated are dead or dying but have seven tiny new one. That pretty much kicked us out of trials also. we go to drtomo not sure if we are moving on to temador or if we are going on hospice. Lynn has became very weak and run down.

                    It was so great to see your post I will continue to pray for you. Best of luck my warrior friend. Sending you lots of love and hugs. Ive cried till i became sick today.

                    Phil S
                    Participant
                      Julie, I am so sorry to read your post, you have been such a strong warrior, fighting with treatment after treatment! I hope that the chemo continues to work on your liver and lungs, and provides some stability until your doctor can find a trial. The brain mets usually respond well to radiation, so praying for you to have good results with treatment. What about AntiPD1 trial once brain mets are stable? Hope ASCO brings us all good news! I am so happy that your daughter is graduating from high school in June, you must be such a proud mother and you will be there cheering her on! God bless you and your husband, keep fighting! Valerie (Phil’s wife)
                      Phil S
                      Participant
                        Julie, I am so sorry to read your post, you have been such a strong warrior, fighting with treatment after treatment! I hope that the chemo continues to work on your liver and lungs, and provides some stability until your doctor can find a trial. The brain mets usually respond well to radiation, so praying for you to have good results with treatment. What about AntiPD1 trial once brain mets are stable? Hope ASCO brings us all good news! I am so happy that your daughter is graduating from high school in June, you must be such a proud mother and you will be there cheering her on! God bless you and your husband, keep fighting! Valerie (Phil’s wife)
                        Phil S
                        Participant
                          Julie, I am so sorry to read your post, you have been such a strong warrior, fighting with treatment after treatment! I hope that the chemo continues to work on your liver and lungs, and provides some stability until your doctor can find a trial. The brain mets usually respond well to radiation, so praying for you to have good results with treatment. What about AntiPD1 trial once brain mets are stable? Hope ASCO brings us all good news! I am so happy that your daughter is graduating from high school in June, you must be such a proud mother and you will be there cheering her on! God bless you and your husband, keep fighting! Valerie (Phil’s wife)
                          Fen
                          Participant

                            Zap those brain mets and charge ahead.  Keeping my fingers crossed for MEK and ASCO.  You are so blessed to have a wonderful spouse.   You have no idea what an inspiration you are.      Fen

                            Fen
                            Participant

                              Zap those brain mets and charge ahead.  Keeping my fingers crossed for MEK and ASCO.  You are so blessed to have a wonderful spouse.   You have no idea what an inspiration you are.      Fen

                              Fen
                              Participant

                                Zap those brain mets and charge ahead.  Keeping my fingers crossed for MEK and ASCO.  You are so blessed to have a wonderful spouse.   You have no idea what an inspiration you are.      Fen

                                kylez
                                Participant
                                  Julia,
                                  Sorry to hear you’re going thru this.

                                  For the occipital lobd tumor is anyone talking craniotomy? i had one of those not much bigger, 2.5 cm maybe. Hardest part was showing up that morning. There’s always a small risk, my neurosurgeon said 4-5% risk of complications. If it’s offers and you trust your neurosurgery dept. / surgeons… i’ve had 3 that size or a little larger resected. plus rad followup too. plus smaller ones zapped. The occ. lobe has been stable since oct. 2010. hole in visual field but not too bad. i’m glad i had that one resected. Simultaneous systemic treatment as well is what i had 2nd time around. others stable since july 2011.

                                  wishing you the best for your choices and treatment.

                                  kylez
                                  Participant
                                    Julia,
                                    Sorry to hear you’re going thru this.

                                    For the occipital lobd tumor is anyone talking craniotomy? i had one of those not much bigger, 2.5 cm maybe. Hardest part was showing up that morning. There’s always a small risk, my neurosurgeon said 4-5% risk of complications. If it’s offers and you trust your neurosurgery dept. / surgeons… i’ve had 3 that size or a little larger resected. plus rad followup too. plus smaller ones zapped. The occ. lobe has been stable since oct. 2010. hole in visual field but not too bad. i’m glad i had that one resected. Simultaneous systemic treatment as well is what i had 2nd time around. others stable since july 2011.

                                    wishing you the best for your choices and treatment.

                                    kylez
                                    Participant
                                      Julia,
                                      Sorry to hear you’re going thru this.

                                      For the occipital lobd tumor is anyone talking craniotomy? i had one of those not much bigger, 2.5 cm maybe. Hardest part was showing up that morning. There’s always a small risk, my neurosurgeon said 4-5% risk of complications. If it’s offers and you trust your neurosurgery dept. / surgeons… i’ve had 3 that size or a little larger resected. plus rad followup too. plus smaller ones zapped. The occ. lobe has been stable since oct. 2010. hole in visual field but not too bad. i’m glad i had that one resected. Simultaneous systemic treatment as well is what i had 2nd time around. others stable since july 2011.

                                      wishing you the best for your choices and treatment.

                                        NYKaren
                                        Participant
                                          Julia, I’m sorry to hear your news… I really hope you respond to the higher dose chemo.
                                          What you said about your husband… he doesn’t HAVE to go through this with you, he WANTS to. You guys are so lucky to have each other. It’s exciting (is that the right word I wonder) that he’s going to ASCO.
                                          I know what you mean about your daughter’s HS graduation. Congratulations, and bring a box of tissues. My son’s graduating college on the 30th and I’m just so thrilled to still be here for this milestone. When my daughter graduated last year, I cried buckets.
                                          I’m thinking of you and hoping the MEK inhibitor is approved very soon– I know the announcement on both drugs is imminent.
                                          Karen
                                          NYKaren
                                          Participant
                                            Julia, I’m sorry to hear your news… I really hope you respond to the higher dose chemo.
                                            What you said about your husband… he doesn’t HAVE to go through this with you, he WANTS to. You guys are so lucky to have each other. It’s exciting (is that the right word I wonder) that he’s going to ASCO.
                                            I know what you mean about your daughter’s HS graduation. Congratulations, and bring a box of tissues. My son’s graduating college on the 30th and I’m just so thrilled to still be here for this milestone. When my daughter graduated last year, I cried buckets.
                                            I’m thinking of you and hoping the MEK inhibitor is approved very soon– I know the announcement on both drugs is imminent.
                                            Karen
                                            NYKaren
                                            Participant
                                              Julia, I’m sorry to hear your news… I really hope you respond to the higher dose chemo.
                                              What you said about your husband… he doesn’t HAVE to go through this with you, he WANTS to. You guys are so lucky to have each other. It’s exciting (is that the right word I wonder) that he’s going to ASCO.
                                              I know what you mean about your daughter’s HS graduation. Congratulations, and bring a box of tissues. My son’s graduating college on the 30th and I’m just so thrilled to still be here for this milestone. When my daughter graduated last year, I cried buckets.
                                              I’m thinking of you and hoping the MEK inhibitor is approved very soon– I know the announcement on both drugs is imminent.
                                              Karen
                                            gabsound
                                            Participant
                                              Thank you all for your kind and encouraging words.

                                              Julie

                                              gabsound
                                              Participant
                                                Thank you all for your kind and encouraging words.

                                                Julie

                                                gabsound
                                                Participant
                                                  Thank you all for your kind and encouraging words.

                                                  Julie

                                                    deardad
                                                    Participant

                                                      Hi I'm sorry about your news. It's very stressful receiving bad scan results, but stay positive that a MEK trial will become available and you will be a responder. Keep in touch.

                                                      Love Nahmi

                                                      deardad
                                                      Participant

                                                        Hi I'm sorry about your news. It's very stressful receiving bad scan results, but stay positive that a MEK trial will become available and you will be a responder. Keep in touch.

                                                        Love Nahmi

                                                        deardad
                                                        Participant

                                                          Hi I'm sorry about your news. It's very stressful receiving bad scan results, but stay positive that a MEK trial will become available and you will be a responder. Keep in touch.

                                                          Love Nahmi

                                                        awillett1991
                                                        Participant
                                                          Julie. – so sorry to hear you are having such a difficult time. Keep fighting and putting one foot in front of the other. You are such an inspiration! Amy
                                                          awillett1991
                                                          Participant
                                                            Julie. – so sorry to hear you are having such a difficult time. Keep fighting and putting one foot in front of the other. You are such an inspiration! Amy
                                                            awillett1991
                                                            Participant
                                                              Julie. – so sorry to hear you are having such a difficult time. Keep fighting and putting one foot in front of the other. You are such an inspiration! Amy
                                                              buffcody
                                                              Participant

                                                                You really are a wonderful gift to all of us.  Just keep on giving and feeling better in doing so every day.  My mother used to always tell me, "This too shall pass."  That's my prayer for you!

                                                                buffcody
                                                                Participant

                                                                  You really are a wonderful gift to all of us.  Just keep on giving and feeling better in doing so every day.  My mother used to always tell me, "This too shall pass."  That's my prayer for you!

                                                                  buffcody
                                                                  Participant

                                                                    You really are a wonderful gift to all of us.  Just keep on giving and feeling better in doing so every day.  My mother used to always tell me, "This too shall pass."  That's my prayer for you!

                                                                    MeNDave
                                                                    Participant

                                                                      Aww, Julie, I have thought about you often and will log in to check and see how you and fellow warrior NYKaren are doing.  I will continue to keep you in my thoughts and prayers… much love to you and your family.

                                                                      Maria

                                                                      MeNDave
                                                                      Participant

                                                                        Aww, Julie, I have thought about you often and will log in to check and see how you and fellow warrior NYKaren are doing.  I will continue to keep you in my thoughts and prayers… much love to you and your family.

                                                                        Maria

                                                                        MeNDave
                                                                        Participant

                                                                          Aww, Julie, I have thought about you often and will log in to check and see how you and fellow warrior NYKaren are doing.  I will continue to keep you in my thoughts and prayers… much love to you and your family.

                                                                          Maria

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