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happyfeet123

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      happyfeet123
      Participant
        Thanks for sharing Sheri and Julie’s excellent adventure. Scenery is breathtaking and the memories are priceless. So, glad you got to experience it in the chubs moblie. Take Care Julie and hopefully the chemo will be kind to you.
        Tammy
        happyfeet123
        Participant
          Hi Mark
          I loved MD !! !!! I know that MD Anderson has a social service department that can assist with referrals to other agencies for help. There is a lot of support in the community for those receiving treatment. Networking with others is awesome. Most people riding hotel and public transportation are receiving treatment. Found everyone to be very nice and willing to help. Keeping you in my thoughts and prayers
          Tammy
          happyfeet123
          Participant
            I was on keytruda for 15 months before I had to discontinue due to colitis. I was on steroids for 6 weeks and needed two rounds of rimcaid to clear up the colitis. I too have experienced diaherra, constipation and stomach pain after this. I am curious to your physician thoughts. I have another appt inJune to discuss? I have been ned for slmost two years. I am very interested in your thoughts. Praying for continuing wellness with this beast for you both.
            happyfeet123
            Participant
              I was on keytruda for 15 months before I had to discontinue due to colitis. I was on steroids for 6 weeks and needed two rounds of rimcaid to clear up the colitis. I too have experienced diaherra, constipation and stomach pain after this. I am curious to your physician thoughts. I have another appt inJune to discuss? I have been ned for slmost two years. I am very interested in your thoughts. Praying for continuing wellness with this beast for you both.
              happyfeet123
              Participant
                Hi Julie
                I love you have a nickname for your Doc. That means you have a great personal and professional relationship. I believe the care even gets better when they have a positive relationship with the patient. I love love the trailer. How fun to travel around in. Have you given it a name. If not, we need too!
                Tammy
                happyfeet123
                Participant
                  Hi Julie
                  I love you have a nickname for your Doc. That means you have a great personal and professional relationship. I believe the care even gets better when they have a positive relationship with the patient. I love love the trailer. How fun to travel around in. Have you given it a name. If not, we need too!
                  Tammy
                  happyfeet123
                  Participant

                    Hi Blessed for Life 

                    I was on keytruda for 14 months when colits happened.  My July and Oct petscan showed I was NED.   It also showed my pancreas and colon were inflammed and keytruda would be no more.  We were going to continue with keytruda passed the two clean petscans due to a new nodule showing up during treatment for extra measure.   I was on a steroid for 5 weeks but once the tapering started the systoms came back.  I had an infusion of rimcaid.  Still having a few issues after the rimcaid. Hoping I will not need another infusioin of it.  I guess I am thankful it came at the end.  Otherwise, I may not have been able to continue with the keytruda.  My oncologist stated I may have issues until the keytruda is out of my body.  Not much fun, but a small price overall to be NED and living my best life.  

                    Happyfeet123

                     

                    happyfeet123
                    Participant

                      Hi Blessed for Life 

                      I was on keytruda for 14 months when colits happened.  My July and Oct petscan showed I was NED.   It also showed my pancreas and colon were inflammed and keytruda would be no more.  We were going to continue with keytruda passed the two clean petscans due to a new nodule showing up during treatment for extra measure.   I was on a steroid for 5 weeks but once the tapering started the systoms came back.  I had an infusion of rimcaid.  Still having a few issues after the rimcaid. Hoping I will not need another infusioin of it.  I guess I am thankful it came at the end.  Otherwise, I may not have been able to continue with the keytruda.  My oncologist stated I may have issues until the keytruda is out of my body.  Not much fun, but a small price overall to be NED and living my best life.  

                      Happyfeet123

                       

                      happyfeet123
                      Participant

                        Hi Mike:

                        I think it takes guts to admit you didn't have the surgery because of your anxiety.  No one thinks any less of you, probably more.  This is part of the disease that is much harder to deal with then the physical part.  It's hard to turn those feelings off and a dose of keytruda/nivo isn't going to cure it.  Thanks for keeping it real and letting others know we all have these feelings.  It is part of the process of what we deal with.  Some days will be good, others not, and some days just suck!!!!!!   Keep posting and encouraging all of us.  

                        Happyfeet123!

                         

                         

                        happyfeet123
                        Participant

                          Hi Jennifer

                          I mostly read the posts and seldom post. Your post struck me because I am going through some of the same feelings.  I had been NED since July but wanted to stay on keytruda for at least six more months. I developed another lesion while on keytruda and my oncologist felt it would be beneficial to stay on it a little longer.  Not the case, developed colitis in October.  I have to admit the first scan after being off was probably the most difficult.  Your hoping and praying it is still working.  It was mentally hard. I had a good scan in January but it doesn’t make the fear any less.  I know I have no control over this and will deal with whatever comes up as it comes.  I try to remember my worse day is someone’s best day. I am hoping as time goes by the aniexty becomes less and less.  I think melanoma changes all of else for good and bad.  I try to focus on the good.  Take Care. 

                          Tammy

                          happyfeet123
                          Participant

                            Hi Erica

                            If you interested in MD Anderson I can find out the name of the doctor I saw.  He was friends with my oncologist at University of San Francisco.  They had similar treatment plans but also some differences in treatment.  I dicussed those with my oncologist at UCSF and her thought process.  One of those differences were brain mri.  MD does them every 3 months and she believed you didn’t need unless you were having symptoms, especially when I was doing so well on keytruda.  She agreed to have one every six months, unless otherwise warranted. I have heard Dr. Weber name on this forum. I believe in a very positive light.  You can search threads by putting his name in the search button.  My question to your doctor would be If nothing can be done until the colitis subsided and the diagnosis is not looking so well why the steroids? The steroids gave me terrible insomnia and wouldn’t want to go there again.  Also, if they did cure the colitis at what point could you go back on the immune therapy?  Right away or do you need to wait weeks for your colon and pancreas to calm down.  I would ask what the plan is since it they are not giving you many options at this time. You might want to ask Celeste.  She is very knowledgeable and has a medical background.  As she said you have to advocate your needs in your treatment plans. I am so sorry you are dealing with this and pray for this to turn around.  I can only imagine how scared you both must be.   This is a great place to be for support.   Everyone on this forum is pulling for you. 

                            Tammy

                            happyfeet123
                            Participant

                              Hi Erica

                              I was on keytruda for 14 months when I developed colitis. Rimcaid is infusion based and it takes about 3-4 hours from start to finish to complete. Depending on your insurance it takes awhile for approval.  If possible, I would have it ordered by a melanoma oncologist.  My local oncologist and GI physician have little knowledge.  My GI doctor stated I didn't look sick to have the treatment.  I stated I don't look like i have stage 4 cancer, but I do.    I was first diagnosed with stage 2 b in 2014, had surgery to remove with every 3 month check ups.  In 2017, found two nodes next to primary. Stage 4 at this point. It spread to the lungs. Keep us updated on your wife's health.  Keeping you in my prayers and thoughts.  If possible, maybe you can get a second opinion with MD Anderson.  I was  really impressed with them.  I went there for a second opinion.  

                              Tammy

                               

                              happyfeet123
                              Participant

                                Hi SA

                                I have an appointment with my oncologist tomorrow.  I brought this up last month but he thought we could wait until the next scan in Jan.  I have had pain in the site where they did the wide excision but not like this.  They state it could be from scar tissue.  I am not someone who over reacts, but I have to admit I am feeling some anxiety.  I cant  wait to get this scan over.   This will be the first one since going off the keytruda.  

                                happyfeet123
                                Participant

                                  Hi Erica

                                  I have been NED since July and stopped Keytruda in October due to colitis. (similar to your friend) I went on predisone for 5 weeks,  but as I was tapering off predisone the symptoms returned.  They suggested a infusion of rimcaid.  It helped but did not completely stop the issues.  I will be doing my second infusion of rimcaid this week.  Hopefully, this does the trick.  My oncologist stated we could rechallenge the keytruda if the melanoma returned but would have to stop immediately if the symptoms returned.  I am wondering if you have tried rimcaid.  If you could get the colitis under control with this maybe you could rechallenge opdivo or keytruda. Did your friend have any symptoms to indicate the melanoma had returned.  I posted a post regarding leg pain.  Your friend situation is scary and makes me a little nervous.  I am hoping and praying for the best for your friend. 

                                  Tammy

                                  happyfeet123
                                  Participant

                                    Best News Ever!!!!!!!

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