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.

In need of a miracle

Forums General Melanoma Community In need of a miracle

  • Post
    JenC
    Participant
      My husband has been in this horrible fight for 17 months. Each step of the way has been met with disappointment and loss of hope. He has done the standard treatments of surgery, adjuvant radiation and interferon, tried to get on the braf trial only to get the control, IL-2 and more radiation and now ipi. However it seems that there is no getting ahead of this cancer. He hasn’t been able to eat mostly due to pain and nausea but also due to the fact that he has tumors on both sides of his throat which causes difficult swallowing.

      My husband has been in this horrible fight for 17 months. Each step of the way has been met with disappointment and loss of hope. He has done the standard treatments of surgery, adjuvant radiation and interferon, tried to get on the braf trial only to get the control, IL-2 and more radiation and now ipi. However it seems that there is no getting ahead of this cancer. He hasn’t been able to eat mostly due to pain and nausea but also due to the fact that he has tumors on both sides of his throat which causes difficult swallowing. His oncologist has always been positive, but was not able to offer much hope during this week’s visit. My husband is down 60 pounds and looks like a cancer patient. He is on week 7 of the ipi trial and we’re holding on to some hope that his tumors could still shrink, however his body cannot heal small wounds, let alone massive tumors. We have a home health and hospice nurse but are not ready to give up completely. I have read this board quite often in the past year and a half and have found hope and insight. I have read many of your stories and have been inspired. I don’t want to just complain about our struggles, but maybe someone out there could provide words of hope. My hope has caused me to go on with my day life almost to the point of not facing the graveness of his situation. Life has been full and busy with two young children and a full time job. I am at a point where I may need to let go of some of my hope and just be with my husband. I hope I don’t make my decision when it’s too late.
      Thanks for listening
      JenC

    Viewing 21 reply threads
    • Replies
        Emrina
        Participant

          I am crying as I am reading your post.  My heart breaks for you.  It really sounds like your husband is suffering.  Enjoy every moment with him, but never loose hope.  Thinking of you. 

          Emrina
          Participant

            I am crying as I am reading your post.  My heart breaks for you.  It really sounds like your husband is suffering.  Enjoy every moment with him, but never loose hope.  Thinking of you. 

            James from Sydney
            Participant

              Jen, i am so sorry to hear your news, i have been in your shoes with our son, yes Ippi may work but responses are sometimes not seen for 12 weeks are you getting any idea from the Onc that there is any response so far. Have you asked your Onc about the BRAF/MEK combo Trial that some people are on, i have read that responses can be seen in 2 weeks.  If he is BRAF positive then this may be an option.

              It is so difficult to know whether to continue to fight or seek comfort and peace. Speak to the Onc then ask your husband what he wants. My thoughts are with you and i pray that one of the treatments will work.

              James

              James from Sydney
              Participant

                Jen, i am so sorry to hear your news, i have been in your shoes with our son, yes Ippi may work but responses are sometimes not seen for 12 weeks are you getting any idea from the Onc that there is any response so far. Have you asked your Onc about the BRAF/MEK combo Trial that some people are on, i have read that responses can be seen in 2 weeks.  If he is BRAF positive then this may be an option.

                It is so difficult to know whether to continue to fight or seek comfort and peace. Speak to the Onc then ask your husband what he wants. My thoughts are with you and i pray that one of the treatments will work.

                James

                Cate
                Participant

                  Hi Jen,  we went through this with my father.  Keep hoping, it takes a while for IPI to kick in and sometimes the tumors grow at first and then start shrinking.  I am also glad you have hospice helping you.  It is a wonderful, much needed service.  Make sure you keep ahead of his pain with medication and live in the moment.  This doesn't mean you are giving up, just enjoy the time you have with him.   Thinking of you.  Cate

                  Cate
                  Participant

                    Hi Jen,  we went through this with my father.  Keep hoping, it takes a while for IPI to kick in and sometimes the tumors grow at first and then start shrinking.  I am also glad you have hospice helping you.  It is a wonderful, much needed service.  Make sure you keep ahead of his pain with medication and live in the moment.  This doesn't mean you are giving up, just enjoy the time you have with him.   Thinking of you.  Cate

                    Sherron
                    Participant

                      Jen,

                      I have been thinking of you, really, just , last night as I was e-mailing another person on the board.  I thought I had not seen you post and that we had not been e-mailing.  Jen, Hope is goodThat is all we have, plus our faith in GodThose are the only 2 things I can think of that we have to hold on too.  I am sorry he can't eat.  Jim could not eat either.  And he lost a great deal of weight and muscle mass.  It hurts so much to see the one you love to be pain, be sick, etc.  I, like you during most of this continued to work…The hope was still there, both of us had the hope …And by working and doing the normal things, it allows you somehow to function, to get thru the day the best you can.  And you have small children, so that in itself, tends to make your keep some kind of normalcy in your life.  Jim had hope even the day before he passed…He never gave up…I took off some days here and there, when we had to go to  VA to blood transfusions, but tried to work, if I could…On Nov 19 , he had his surgery, then I really knew how bad it was….I did not go back to work…just unpaid days but we spent a lot of time together while he was in the hospital…but Jim still had hope, me, I was a little out of it, but somehow got thru it..I don't know how…Maybe you can take a leave of absence, if you feel you need to be home with him…Jim could not come back home…He needed 24/7 care.  Do what you feel you need to do.  Remember, you can always e-mail me at my home e-mail.  Love  & Hugs to your family.

                      Take Care,

                      Sherron, wife to Jim FOREVER

                      Sherron
                      Participant

                        Jen,

                        I have been thinking of you, really, just , last night as I was e-mailing another person on the board.  I thought I had not seen you post and that we had not been e-mailing.  Jen, Hope is goodThat is all we have, plus our faith in GodThose are the only 2 things I can think of that we have to hold on too.  I am sorry he can't eat.  Jim could not eat either.  And he lost a great deal of weight and muscle mass.  It hurts so much to see the one you love to be pain, be sick, etc.  I, like you during most of this continued to work…The hope was still there, both of us had the hope …And by working and doing the normal things, it allows you somehow to function, to get thru the day the best you can.  And you have small children, so that in itself, tends to make your keep some kind of normalcy in your life.  Jim had hope even the day before he passed…He never gave up…I took off some days here and there, when we had to go to  VA to blood transfusions, but tried to work, if I could…On Nov 19 , he had his surgery, then I really knew how bad it was….I did not go back to work…just unpaid days but we spent a lot of time together while he was in the hospital…but Jim still had hope, me, I was a little out of it, but somehow got thru it..I don't know how…Maybe you can take a leave of absence, if you feel you need to be home with him…Jim could not come back home…He needed 24/7 care.  Do what you feel you need to do.  Remember, you can always e-mail me at my home e-mail.  Love  & Hugs to your family.

                        Take Care,

                        Sherron, wife to Jim FOREVER

                        JuleFL
                        Participant
                          Hello, Jen. Spending more time with your husband is not giving up hope. Perhaps you can take some leave from work for awhile. It also might help your husband to have you less busy with day-to-day life. Ask friends and family for help if you can. Week 7 of ipi is still early. Wishing you hope and healing.
                          Jule
                            Sherron
                            Participant

                              Hey Jule,

                              Hope you have a great day….Keep busy….keep busy….and still keep busy…That is what I am trying to do….I am glad we have found each other.  It helps to vent…Hugs to you!

                              Take Care,

                              Sherron, wife to Jim FOREVER

                              cherimichele
                              Participant

                                hi… i am researching the effects of ionized/alkaline water.. and apparently it has worked miracles… huge miracles..

                                i met a man who said he knew two cancer victims who were weeks away from leaving the planet.. they both are cancer free now.. and attribute this to the alkaline/ionized water.. its not expensive.. its available.. and why not try it..

                                 

                                hope and love to you

                                jillian_g
                                Participant

                                  Just pray and don't lose hope. Everything will be fine. Just trust in the Lord, your husband will be okay in no time. He needs you so as much as possible try to be there for him.

                                   

                                  Coffee break

                                  jillian_g
                                  Participant

                                    Just pray and don't lose hope. Everything will be fine. Just trust in the Lord, your husband will be okay in no time. He needs you so as much as possible try to be there for him.

                                     

                                    Coffee break

                                    cherimichele
                                    Participant

                                      hi… i am researching the effects of ionized/alkaline water.. and apparently it has worked miracles… huge miracles..

                                      i met a man who said he knew two cancer victims who were weeks away from leaving the planet.. they both are cancer free now.. and attribute this to the alkaline/ionized water.. its not expensive.. its available.. and why not try it..

                                       

                                      hope and love to you

                                      Sherron
                                      Participant

                                        Hey Jule,

                                        Hope you have a great day….Keep busy….keep busy….and still keep busy…That is what I am trying to do….I am glad we have found each other.  It helps to vent…Hugs to you!

                                        Take Care,

                                        Sherron, wife to Jim FOREVER

                                      JuleFL
                                      Participant
                                        Hello, Jen. Spending more time with your husband is not giving up hope. Perhaps you can take some leave from work for awhile. It also might help your husband to have you less busy with day-to-day life. Ask friends and family for help if you can. Week 7 of ipi is still early. Wishing you hope and healing.
                                        Jule
                                        Lori C
                                        Participant

                                          Jen, I don't think it's ever wrong to keep on hoping.   We may be facing uphill battles but we never know the outcome or the timing.  If you feel like you should be with your husband, perhaps you could work fewer hours or take a leave of absence; that's not giving up hope.  I did that with Will and I had hopes he would continue to improve until the last 15 or so hours of his life.  Things could have gone either way.

                                          Hope is sustaining.  I was determined not to grieve Will while he was alive, though certainly I was grieving the loss of his health.  Hope helped me stay in the present and not project too far down the road.  I am a big fan of not giving up hope until you absolutely have to. 

                                          Lori C
                                          Participant

                                            Jen, I don't think it's ever wrong to keep on hoping.   We may be facing uphill battles but we never know the outcome or the timing.  If you feel like you should be with your husband, perhaps you could work fewer hours or take a leave of absence; that's not giving up hope.  I did that with Will and I had hopes he would continue to improve until the last 15 or so hours of his life.  Things could have gone either way.

                                            Hope is sustaining.  I was determined not to grieve Will while he was alive, though certainly I was grieving the loss of his health.  Hope helped me stay in the present and not project too far down the road.  I am a big fan of not giving up hope until you absolutely have to. 

                                            mrsmarilyn
                                            Participant

                                              I just wondering what the outcome of the Braf/MEK effort was?  It has been a miracle for my brother. don't give up-and our thoughts are with you.  Please feel free to email me direct if needed.

                                              MrsMarilyn

                                              mrsmarilyn
                                              Participant

                                                I just wondering what the outcome of the Braf/MEK effort was?  It has been a miracle for my brother. don't give up-and our thoughts are with you.  Please feel free to email me direct if needed.

                                                MrsMarilyn

                                                emilypen
                                                Participant

                                                  Jen,

                                                  If your husband got the control arm of the BRAF study than he can now switch to the BRAF drug as long as he can swallow the pills.

                                                  Roche/Plexicon has opened both a compassionate use arm of the study and an arm that allows all control arm patients to switch to the drug.

                                                  They only opened it up about 4 weeks ago but my husband is now on the drug because he too had the control arm orginally.

                                                  My thoughts and hopes are with you both.

                                                  Em

                                                  emilypen
                                                  Participant

                                                    Jen,

                                                    If your husband got the control arm of the BRAF study than he can now switch to the BRAF drug as long as he can swallow the pills.

                                                    Roche/Plexicon has opened both a compassionate use arm of the study and an arm that allows all control arm patients to switch to the drug.

                                                    They only opened it up about 4 weeks ago but my husband is now on the drug because he too had the control arm orginally.

                                                    My thoughts and hopes are with you both.

                                                    Em

                                                    Sherron
                                                    Participant

                                                      Jen,  I am so sorry …Please keep fighting and stay positive as long as you can.  I know it is so hard.  Maybe, the ipi will start working soon.  It seems to help some people.  I am sorry he has lost so much weight, because it is difficult for him to eat, and without eating, hard to gain his strength.

                                                      He is a wonderful husband encouraging you to keep working, taking care of your chldren and trying to live your daily life as normal as you can…Jim did that also….He would get ready like he was going to work, …..and he did not go to work,…it took me a while to figure this one out.  It was to keep me going, him acting like everything was okay.  We each deal with all this differently…The day before Jim passed, he was talking about getting back home.  He did this for me and for himself too.

                                                      I pray he is pain free and that he is able to stay at home…Jim was not able to do that after surgery…he never regained his strength, could not eat, and could not even get out of bed…so VA sent him to their Hospice( The Community Living Center)…Jim said he would be there until he got stronger..:<)…

                                                      Jen, hugs and prayers to you.

                                                      Take Care,

                                                      Sherron, wife to Jim FOREVER

                                                      Sherron
                                                      Participant

                                                        Jen,  I am so sorry …Please keep fighting and stay positive as long as you can.  I know it is so hard.  Maybe, the ipi will start working soon.  It seems to help some people.  I am sorry he has lost so much weight, because it is difficult for him to eat, and without eating, hard to gain his strength.

                                                        He is a wonderful husband encouraging you to keep working, taking care of your chldren and trying to live your daily life as normal as you can…Jim did that also….He would get ready like he was going to work, …..and he did not go to work,…it took me a while to figure this one out.  It was to keep me going, him acting like everything was okay.  We each deal with all this differently…The day before Jim passed, he was talking about getting back home.  He did this for me and for himself too.

                                                        I pray he is pain free and that he is able to stay at home…Jim was not able to do that after surgery…he never regained his strength, could not eat, and could not even get out of bed…so VA sent him to their Hospice( The Community Living Center)…Jim said he would be there until he got stronger..:<)…

                                                        Jen, hugs and prayers to you.

                                                        Take Care,

                                                        Sherron, wife to Jim FOREVER

                                                        Sherron
                                                        Participant

                                                          jILL, you can e-mail me anytime…I think you already have my e-mail…Love, Sherron

                                                          Sherron
                                                          Participant

                                                            jILL, you can e-mail me anytime…I think you already have my e-mail…Love, Sherron

                                                            Sherron
                                                            Participant

                                                              Sorry,meant Jen….I do know who you are….

                                                                Sherron
                                                                Participant

                                                                  I also thought this was a very recent post….I see it is from February….

                                                                  Sherron
                                                                  Participant

                                                                    I also thought this was a very recent post….I see it is from February….

                                                                  Sherron
                                                                  Participant

                                                                    Sorry,meant Jen….I do know who you are….

                                                                Viewing 21 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.