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momof4boys

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      momof4boys
      Participant
        I have discussed this fact with my onc. who is a mel specialist and she is completely for it. I had mine taken out 4 1/2 years ago in the groin. I also have 4 young boys so I know what its like to “have ” to be there. I do have lymphedema and yes some minor adjustments had to be made for that but my outlook is “who cares, I’m alive.” When I first joined this group the statistics were horrible and I just felt like I was going to do whatever needed to survive. Treatments have came a long way since then so the statistics dont matter anymore. Bottom line is this disease is unpredictable and you need to do whats best for you. Your family will learn to adjust. Maybe you will need a little help, everyone does at one point or another! Good luck with your decision.
        momof4boys
        Participant
          Im pretty biased as I was in the same boat as you 4 1/2 years ago. I did the clnd and have not recurred. I have scans this week so I’m hoping it stays that way. I did get lymphedema and will have that forever. I also did Ipi.
          momof4boys
          Participant
            Omg, yes! She has been my oncologist for 4 years. She is great, very friendly, up to date on current info. I love her. Unmc is great as well. Havent been to the new cancer center yet but will in Nov with scans. Good luck to you. Where is yours located?
              momof4boys
              Participant
                I see you posted this morning, what did you think? How was your experience?
              momof4boys
              Participant

                It sounds through reading your post that you are not ready to return to work. Maybe you should give yourself a little more time getting back your energy until you don't feel so overwhelmed with it. I realize this may not be possible and probably are needing to return after not having worked for awhile. If that is the case, take it slow. Maybe jumping right in to 5 days a week is too much. Basically what I am saying is, listen to your body, it seems to be telling you something. Good luck to you

                Rachel

                momof4boys
                Participant

                  You, my dear, always try to keep it light and funny on here, just what we all need! I appreciate you and your posts and have been wondering how you were doing. Hope this is it and hopefully Larry didn't get too attached like we have!!

                  Rachel

                  momof4boys
                  Participant

                    I had this done last summer. I was very nervous about the whole thing but after I came out of anesthia it wasn't bad at all. I was a little sore but nothing too big and my surgeon did a freeze stain so they pretty much had an answer before I came to. All in all, this was by far my easiest "surgical" procedure to date.

                    momof4boys
                    Participant

                      Janis…so sorry. You guys have been through so much. I'm sure you are exhausted. I've never lost my spouse, but I did lose my mom to cancer. All I can say to you is take it one day at a time. They same time heals wounds and they are sort of right. I don't know that you'll ever heal but hopefully time will at least give you some peace. Also Janis, I for one have gotten used to reading your posts so please check back in with us and let everyone know how you're doing.

                      Prayers to you and your family

                      Rachel

                      momof4boys
                      Participant
                        http://brustfuneralhome.com/blog/?
                        Actually this is the funeral home.
                          momof4boys
                          Participant

                            I don't know about you guys but this time I'm just pissed off! I hate this stupid disease! I know God has a plan for each of us that we don't understand but I'm sorry, this just pisses me off. Why is it always the good people? There are plenty of people in this world that are not even close to people like Josh, Paul, Jamie, Shane, Artie, Juan, etc. Why do the good ones have to go first? I feel like we haven't talked to Josh for so long we never got to really tell him how we all feel. It's so unfair.

                            Rachel

                          momof4boys
                          Participant

                            Janis, so sorry to hear about Shane. There seems to be so much sadness on this board lately! I know your heart is breaking and so mine breaks for you at this time. Just cherish what time you have and have hope you will see him again without all the pain and suffering. Prayers for your family

                            momof4boys
                            Participant

                              So it has taken me a whole day to gather my thoughts enough to post this. Obviously Josh meant a lot to alot of us here. I would like to share what he meant to me. When I first started this journey 4 years ago now, I was just like all the rest of you, scared shitless! I am a mother to 4 boys, young at the time. I am a internet junkie, meaning I research everything. Once I saw the statistics, the old statistics, I thought for sure I was going to die in the next couple of years. I was given the option of Interferon or a trial. I was so scared of taking Ipi so I was just about ready to go with Interferon when I found this board. I read some amazing stories about Immunotherapy and was sold but the two people that gave me tremendous hope was Josh and Celeste. I even told their stories to my onc. Celeste was obvious because she has a wealth of knowledge but Josh, I don't even know what it was about him. I guess I could tell that he was a genuinely good guy. When Artie started progressing this board of people just became so strong together and I think Josh had to do with that. When Artie passed it was so hard on all of us but especially Josh. After that he seemed to kinda step into Artie's role a little bit in that he was always posting great things to people. Which then he got so close with Paul. Paul and Josh were both great guys and everyone loved to read their posts. I think Josh lost a lot of hope when his dear friend Paul passed. That too was hard on all of us. Now to think about our beloved Josh in this same situation just absolutely breaks my heart as I can see it does all of yours as well. I know personally this has been a punch in the face to me because I just hit the 4 year mark and I have allowed myself to think maybe I've beat this for good. Then I think about Josh and he thought the same thing, until it returned with a vengance. I know I will sure be thinking about our good lost friends every day as I make choices in my life to be the best I can be. I hope Josh is able to hear how much he means to all of us before he goes. My life has been tremendously touched by someone I've never even met and he probably has no idea. I will pray for his wife and his 2 kids, his brother and everyone else as I'm sure he has left an impact on many peoples lives. As I write this Artie's picture is on the side of the page and I'm sure he's looking down on Josh right now, just waiting to see his good friend again. I feel this is some kind of a sign, as I have never seen Artie's on here!

                              Rachel

                              momof4boys
                              Participant
                                Yes I was able to do it all including maintenance. So basically what for like a year, year and a half. I did 3mg and the only real side effect was itching which I controlled first with benadryl then a prescription later. So yeah, it wasnt bad at all. Fatigue the day of infusion. I have scans thur so hopefully nothing has changed.
                                momof4boys
                                Participant
                                  What has worked for me for the last 4 years is dont let your mind wander to much. One day at a time and before you know it, you’ll be back to living life. It may be a little different life but it wont consume you anymore. I guess for me getting past the first year and all the scans, treatments and visits thats when I started feeling back to myself. I developed lymphedema in my leg so that changed some things but im living life. I think it just takes some time to get your new normal.
                                  momof4boys
                                  Participant
                                    One question, are you seeing a melanoma specialist? I just wondered since you mentioned your primary hadn’t heard of it. Mel specialist are up to date on all the new treatments. His side effects probably should be shared with his onc and he needs to be honest in order to have the best chance of beating this beast. I hope you stay around, its best to be on top of all the new treatments and what better way to weigh options than by hearing others stories. Plus its a place to vent a little to fellow mel warriors and caregivers!
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