The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Ipilimumab – a story of hope!

Forums General Melanoma Community Ipilimumab – a story of hope!

  • Post
    willtolive
    Participant

      Hi everyone

      I´ve been reading posts at this Bulletin Board for almost a year now. Some posts I have read with tears in my eyes, and some with joy. Here is our story (short version): 

      I am the husband to a 39 year old woman from Denmark in Europe.

      In 2003 she had a mole removed from her thigh (Stage II). It contained melanoma-cells.

      In 2007 melanoma had spread to a lymph-node in her groin (Stage III). Surgery was needed.

      In 2008 melanoma relapsed in another lymph-node, surgery again.

      Hi everyone

      I´ve been reading posts at this Bulletin Board for almost a year now. Some posts I have read with tears in my eyes, and some with joy. Here is our story (short version): 

      I am the husband to a 39 year old woman from Denmark in Europe.

      In 2003 she had a mole removed from her thigh (Stage II). It contained melanoma-cells.

      In 2007 melanoma had spread to a lymph-node in her groin (Stage III). Surgery was needed.

      In 2008 melanoma relapsed in another lymph-node, surgery again.

      In 2009 melanoma hit us hard (Stage IV). It had spread to her lungs, one met in each lung. The size of the mets was 25 mm and 16 mm respectively. Surgery was fortunately possible.

      In October 2010 melanoma went back. This time there was multiples mets in each lung. About 5-6 mets in each lung. The biggest was 19 mm. It was unsurgeable, which was very hard to cope with.

      In November she began Interferon/Interleukin-2 treatment. It was tough beyond imagination. She had all the known sideeffects, and she was so bad during hospitalization. The midway PET/CT scans in January revealed that she was a responder! Scans showed that all the mets had become inactive or necrotic. Some mets had even shrunk a little bit. We were delighted, and she continued with the third and fourth series of Interferon/IL-2.

      February 15 we got the results of the next scan. We were optimistic because the midway scans was indeed promising. We were shocked when told that the melanoma had began to grow again. There was 2 active mets now. One big met, about 32 mm in diameter, in her right lung lightened up. In addiction there was a lot of fluid in the right lung membrane, and it probably contained melanoma-cells. All other mets was still inactive, except one, and our doctor feared that it would be only a matter of time, before the other mets would begin to grow again. We were devastated.

      Our doctor suggested Ipilimumab, and my wife started March 11, on the same day Japan was shaken by the huge earthquake. I watched it on TV while she was receiving the first dose of ipilimumab (3 mg/kg dose). I remember wishing that the drug was the earthquake of our lives…

      My wife have always been a positive and happy human being, no matter what challenges life would bring, she still truly believe that she could defeat this Melanoma Devil. She began consulting a Chinese doctor and received acupuncture twice a week. Beside this she trained 4-5 times a week, fitness and running. In these situations we talked about preparing your body to fight the cancer, with a "little" help from our friend, ipilimumab…

      She received 4 doses every third week and got a CT scan in June.

      Three days ago on June 21 we arrived to the hospital to talk with our doctor about the results of the CT scan. The time from the scans being done and to get the results is awful with a lot of anxiety, you guys all know… The scan showed that the 32 mm met in the right lung was completely GONE!!!!! The fluid was gone too, and the x-ray showed a nice healthy looking right lung. We were stunned. I hugged my wife with a lot of tears in my eyes. Our doctor was very delighted too. Ipilimumab had worked much better than expected. We had hoped for stabilization, maybe shrinkage, if we were lucky. But this???? Unbelievable. Some other small mets was still there but hasn´t grown in size in half a year, and our doctor said it very well could be necrotic tissue.

      This is where we stand now. We´re thrilled and delighted and so so happy. We have now dared to plan for more than a month 🙂

      So this story is to all you Warriors out there, keep on fighting with believe and trust in your hearts. The path is very tough but the battle can be won, sooner or later. We´ll keep fighting this Devil.

       

      Kind regards

      willtolive

    Viewing 17 reply threads
    • Replies
        jimjoeb
        Participant

          FANTASTIC!

            Lisa13
            Participant

              Thank you so much for posting your wife's success story.  I'm so very happy for your wonderful news and hope this trend continues for years to come.   Your wife's positive spirits and refusal to back down was also a contributing factor to her success – keep going!

              I also have up to 15 mets in my lungs (all less than 1cm) and currently on dacarbazine as a first line treatment. Ipillumumab will be next if needed, so I truly hope I can have a similar story 🙂

              Never give up!

              Lisa

              Lisa13
              Participant

                Thank you so much for posting your wife's success story.  I'm so very happy for your wonderful news and hope this trend continues for years to come.   Your wife's positive spirits and refusal to back down was also a contributing factor to her success – keep going!

                I also have up to 15 mets in my lungs (all less than 1cm) and currently on dacarbazine as a first line treatment. Ipillumumab will be next if needed, so I truly hope I can have a similar story 🙂

                Never give up!

                Lisa

              jimjoeb
              Participant

                FANTASTIC!

                kylez
                Participant

                  Awesome news. That's so great.

                  I appreciate you posting this, it helps me hope for the same kind of results for myself too.

                  kylez
                  Participant

                    Awesome news. That's so great.

                    I appreciate you posting this, it helps me hope for the same kind of results for myself too.

                    Carol Taylor
                    Participant

                      Read with tears of joy, thanksgiving,and awestruck wonder! Thank you so much for sharing your journey! Give your wife bunches of hugs & kisses!

                      Can I ask a favor of you please? If you're on Facebook, will you go to the Melanoma Prayer Center and post this please? You don't have to "like" the page, but this would give so many so much hope and give you & your wife alot of prayer support. There are a lot of people who read that page and aren't on here, and there are a lot around the world and who aren't counted in the official "likes." We need stories like yours and your wife's!

                      If you aren't on FB, while you can read everything on the page, I don't think you can post, so if you aren't on, could I have your permission to copy/paste what you've written and post it myself with whatever name/signature you wish?

                      And if you say "no" that you're sharing in this forum only, that's good too. I'm just grateful you shared!

                      Lord, in Your mercy, Thank You for what You're doing in this family. Continued blessings on them. Amen.

                      Grace and peace,

                      Carol

                      Carol Taylor
                      Participant

                        Read with tears of joy, thanksgiving,and awestruck wonder! Thank you so much for sharing your journey! Give your wife bunches of hugs & kisses!

                        Can I ask a favor of you please? If you're on Facebook, will you go to the Melanoma Prayer Center and post this please? You don't have to "like" the page, but this would give so many so much hope and give you & your wife alot of prayer support. There are a lot of people who read that page and aren't on here, and there are a lot around the world and who aren't counted in the official "likes." We need stories like yours and your wife's!

                        If you aren't on FB, while you can read everything on the page, I don't think you can post, so if you aren't on, could I have your permission to copy/paste what you've written and post it myself with whatever name/signature you wish?

                        And if you say "no" that you're sharing in this forum only, that's good too. I'm just grateful you shared!

                        Lord, in Your mercy, Thank You for what You're doing in this family. Continued blessings on them. Amen.

                        Grace and peace,

                        Carol

                        jim Breitfeller
                        Participant

                          Willtolive,

                          Congrats on your immune response!!

                          Is it possible to contact about your therapies? I believe that the IFN/IL-2 set the stage for your complete response. Please contact me so I can get your whole time-line of therapies. Thanks in advance

                          Jimmy B

                          [email protected]

                           

                          Did High Dose Interferon Alpha set the stage for the perfect Orchestration of an Immune Response?Melanoma..Jim Breitfeller

                           
                          As I continue my search for the Holy Grail, I need to keep grounding myself to what really took place in the Melanoma treatment. I can not keep wondering if Interferon therapy had played a part in our successful treatment. Both Vicky and I did some IFN therapy first.

                          http://melanomamissionary.blogspot.com/2010/01/did-high-dose-interferon-alpha-set.html

                          jim Breitfeller
                          Participant

                            Willtolive,

                            Congrats on your immune response!!

                            Is it possible to contact about your therapies? I believe that the IFN/IL-2 set the stage for your complete response. Please contact me so I can get your whole time-line of therapies. Thanks in advance

                            Jimmy B

                            [email protected]

                             

                            Did High Dose Interferon Alpha set the stage for the perfect Orchestration of an Immune Response?Melanoma..Jim Breitfeller

                             
                            As I continue my search for the Holy Grail, I need to keep grounding myself to what really took place in the Melanoma treatment. I can not keep wondering if Interferon therapy had played a part in our successful treatment. Both Vicky and I did some IFN therapy first.

                            http://melanomamissionary.blogspot.com/2010/01/did-high-dose-interferon-alpha-set.html

                            TracyLee
                            Participant

                              Praise God! I just had my second ipi transfusion last Friday.

                              I know that God is curing me, with a little boost from ipi and a lot of prayers and support from so many wonderful people.

                              Awesome post!

                              Hug your wife, plan for months from now, live life!

                              TracyLee

                              TracyLee
                              Participant

                                Praise God! I just had my second ipi transfusion last Friday.

                                I know that God is curing me, with a little boost from ipi and a lot of prayers and support from so many wonderful people.

                                Awesome post!

                                Hug your wife, plan for months from now, live life!

                                TracyLee

                                MariaH
                                Participant

                                  Thank you so much for sharing your good news.  It lifts the spirits of many who have just been knocked down again by this crappy disease.  So very happy for the both of you!!

                                  Maria

                                  MariaH
                                  Participant

                                    Thank you so much for sharing your good news.  It lifts the spirits of many who have just been knocked down again by this crappy disease.  So very happy for the both of you!!

                                    Maria

                                    cfw9186
                                    Participant

                                      Praise the LORD, I am about to receive my 4th IPI infusion next month and swear since my 3rd my lungs feel better, but I do not want to hold onto false hope, this is such a difficult path, but to hear a story like this lightens my heart and brings much joy and hope into my soul.  I am so happy for you….I pray it works like this for all of us.  God Bless.

                                      cfw9186
                                      Participant

                                        Praise the LORD, I am about to receive my 4th IPI infusion next month and swear since my 3rd my lungs feel better, but I do not want to hold onto false hope, this is such a difficult path, but to hear a story like this lightens my heart and brings much joy and hope into my soul.  I am so happy for you….I pray it works like this for all of us.  God Bless.

                                        cfw9186
                                        Participant

                                          Praise the LORD, I am about to receive my 4th IPI infusion next month and swear since my 3rd my lungs feel better, but I do not want to hold onto false hope, this is such a difficult path, but to hear a story like this lightens my heart and brings much joy and hope into my soul.  I am so happy for you….I pray it works like this for all of us.  God Bless.

                                          cfw9186
                                          Participant

                                            Praise the LORD, I am about to receive my 4th IPI infusion next month and swear since my 3rd my lungs feel better, but I do not want to hold onto false hope, this is such a difficult path, but to hear a story like this lightens my heart and brings much joy and hope into my soul.  I am so happy for you….I pray it works like this for all of us.  God Bless.

                                            JerryfromFauq
                                            Participant

                                              I have had a strong suspicsion that there is a beneficial relationship between Ipi and il-2.  Jimmy B has done much technical follow thru in this area.  I urge that he be provided info on timing and dosage of treatment info.  Il-2 often seems to "prime the pump" for other treatments that may follw it.  in the case of Ipi, and il-2 it may be possible that each helps set the stage for continued inprovement by the other.  Mow if we could get more dual treatment clinical trials.

                                              JerryfromFauq
                                              Participant

                                                I have had a strong suspicsion that there is a beneficial relationship between Ipi and il-2.  Jimmy B has done much technical follow thru in this area.  I urge that he be provided info on timing and dosage of treatment info.  Il-2 often seems to "prime the pump" for other treatments that may follw it.  in the case of Ipi, and il-2 it may be possible that each helps set the stage for continued inprovement by the other.  Mow if we could get more dual treatment clinical trials.

                                            Viewing 17 reply threads
                                            • You must be logged in to reply to this topic.
                                            About the MRF Patient Forum

                                            The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                                            The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

                                            Popular Topics