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  • Post
    daughter1
    Participant

      HI.   I haven't posted in a while and I just wanted to give an update and post a few thoughts/questions about my mothers journey.   August of 2016 she had a CT scan because she was experiencing discomfort.  Nothing was there.  Not a thing.  February 2017- she thought she was having gall bladder attack.  We took her to the hospital thinking that she needed gall bladder surgery.   Gall bladder was clear.  Liver was not.  In hospital for a few days.  Doctors suspected melonoma because of her history (2 wide excisions performed on her back- 12 years ago- deemed clear)   Biospy came back benign.  we were elated- but I couldn't rest until we had the best of the best telling us she was fine.   Made an appt with Sloan (we live in NJ- thankfully!)  There testings came back with absolute certainty- their biopsy- Stage IV metastatic melamona.  Found in her liver, spleen and tiny in her lungs.  Started ipo/nivo in March.   First treatment- fine with very little side effects (occasional fevers and sweats)  Second treatment-  fevers worsening and night sweats something fierce.  Kidney and liver levels postponed third schedules treatment.  Was put on steroids and monitired twice a week with blood work in Basking Ridge.  

       

      I should mention that when we arrived for the third scheduled treatment that she didnt receive- we got the results from the first cat scan since starting immunotherapy.   Report was positive- ofcourse I was looking for a miracle but I was assured that the results were good   Slight decrease in all tumors and even more remarkable was the density of these tumors.  Dr. assured us that going off the schedule wasn't that big of a deal because the meds would still be working.   

       

      Ok- so moving on-  three or 4 weeks- (I don't remember!) of steroids and blood work, she was approved to receive third treatment yesterday.  She received a second cat scan last week prior to this third treatment.  Dr. came into office very pleased.  Said that he is now going to move her to just Opdivo every two weeks.  He was concerned that the combo would have side effects that could hospitalize her.  He was happy so we were happy.  

      I got home and took a look at her cat scan report.  (he didnt show us the results yesterday in his office- and at times, I will be honest, he makes me feel awkward asking questions.- I will accept all of that- just save my mothers life- you can make me feel any way you want!!)  

      So the report showed little to no decrease at all.  Positives- no new tumors.  (remember how aggressive this is from august to feb) but the size of the tumors didnt really shrink at all.  

      I guess there is a part of me that wanted better news.  I know I know- this is a marathon not a sprint- but her side effects weren't totally crazy from the combo- why couldn't we just continue with it. 

       

      Thoughts?  This is a true nightmare. I hate when I hear this extends lives- although its wonderful that lives are extended by this amazing revolutionary thing called immumotherapy and I thank God that he put brilliant scientists on this earth to tremendously improve the way we treat cancer,  I am constantly worried about this-   how many months years, are you talking?  I know we don't have a crystal ball- but is it possible my mom could live like this for years and years.  Is it possible she will be here to see my sons get married.  

      Need some hope here.  THanks in advance.  And thanks to all of you that selflessly respond and share your own stories. 

       

      Sincerely ,

      Robin

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        UBContributor
        Participant

          I think this: since it has been 12 years since the first Dx (long time, really), this could mean her cells are slow growing, so if you keep having your treatments slowly and consistently, then it can be kept at bay. Good luck. 

          ed williams
          Participant

            Hi Robin, with Melanoma treatments like the one your mom is getting some answer are hard to find because the treatments are still new. The study of Ipi and Nivo that lead to the combination being approved is called checkmate 067 which I have been part of since Jan. of 2014. I am considered a partial responder with shrinkage of lung tumors and stable disease based on Ct scan now for about 40 months. I still go every two weeks for treatment and scans every 3 months. While clear scans and being NED would be welcomed, I have kind of got used to having my little tumor friend in my right lung. I have a link for you which features Dr. Omid Hamid of the Angeles Clinic speaking about current and future directions for Melanoma treatments. At the 6.00 min mark he talks about Ipi and side effects, many Oncologist done like to push too much Ipi adverse events start showing up!!! Best Wishes!!!Edhttps://www.youtube.com/watch?v=FtQJQhQE3dQ

              ed williams
              Participant

                last sentence should read " Ipi once adverse events start showing up"

              cancersnewnormal
              Participant

                As Ed mentioned, it is difficult to have any real answers. What you can hang onto is hope, becaue it is possible that your mom will be around for a good loooooong time and will see your sons get married. Partial responses/stability, at the very least, buy time. Again, pointing to Ed, 40 months is a long while, and he's still here ticking along!  : )  Doctors and researchers still continue to make advances, particularly with the introduction of these immunotheraputic drugs. They now have tipping points to continue advancing….. "Why doesn't everyone respond?" "What is different about mutations that we could alter or attack on a secondary level?" "Why do some patients fully respond and others only partially?" That's just the tip of the iceburg. There are also researchers sniffing around how to prevent metastasis in the first place. Once a lesion exists, how do they get it to stop breaking off mutant cells to set up shop elsewhere? It's all in the works, and like with treatments, it all takes some time… more than any of us would like… but still… stability means more time. There are those of us fortunate enough to be living NED post treatment too. Celeste has been around for a gooooood long while since the conclusion of her trial treatment. She's a wealth of information by the way…. pick through threads for "Bubbles" and you'll find links to lots of recent and helpful research. I also know a gent in Colorado who has been on BRAF drugs for years and years and is still holding strong NED. From a personal standpoint, Ipi did little to nothing for me, but was my only option with "uncontrolled brain mets". I had some surgeries and a brief stint with Mekinist (I am not the standard FDA approved mutation for BRAF inhibitors… soooo… that's a whole side story). The MEK helped shrink things a bundle, and the research is being continued in trial phases on other "odd mutations" that exibit BRAF characteristics. Unfortunately, the MEK didn't work for long, and I was sprouting brain issues within 2 months…. BUT… it bought me precious time. Finally, Keytruda gained FDA approval, and I was put on it immediately. That was 2 1/2 years ago. I was on the treatment once every 3 weeks for 29 rounds, before side effects forced me to stop in early July 2016. I had a brain MRI four weeks ago. It's still only showing 2 tiny bits of gamma treated scar tissue. My body CT from 2 weeks ago is clear of melanoma… still. Going from brain mets (lungs too) and a grand mal seizure in April 2013 to no active disease at 11 months post stoppage of treatment…. I could bear hug every researcher, doctor, and "test facilitator" (be they human or mouse species!) who has put an effort into finding a "cure". It has taken over 4 years to get me here, but when I look back, it sometimes feels like this all happened to someone else. I feel entirely too well, and too normal for it to have happened to me. 2013 and 2014 were dicey years, but every brain radiation, surgical procedure, or drug tried, bought me time. Sometimes, when things are looking real sh**ty, you just have to tuck your chin in and think "How do we get through this today, until the next best thing to try comes along?". It is indeed a marathon… and the first 13 miles sometimes suck… but once your adrenaline kicks in and your legs hit autopilot, you'll be surprised how easily time flies by. ; )

                  UBContributor
                  Participant

                    Very inspiring to read your journey! 

                    daughter1
                    Participant

                      I can't thank you enough for taking the time to respond so selflessly.  You have given me hope. God Bless.

                    RitysMom
                    Participant

                      Robin,

                      I know exactly how you feel…I'm watching my 32 year old daughter suffer through this. Do I really want to know how long she has left? Some days I do, because we could make the most of every moment…most days I don't, because I think it would overwhelm and depress me. I often beg God not to take her. Will she be able to become a mother and raise her children? I want her to be a grandma! She miscarried twins in 2014, so it's heavy a burden for her.

                      I am trying to be positive and strong for my family, but it is hard. I am afraid to say some of these things out loud! I am blessed to have an amazing husband, but whenever I speak about my fears, he goes into fixer mode and says everything will be ok…I know that's how he is, but I sometimes need him to just listen.

                      I, too, am grateful for all the advancements that have been made, but I also worry that whatever time she has left will be spent fighting this dreaded disease.

                      I'm sorry if this comes across negatively…I truly am positive 95% of the time! It's been hard reading about the losses that have hit this group, and our own journey has had recent setbacks, so I'm just having a difficult time right now. Thank you for letting me vent.

                        daughter1
                        Participant

                          I AM SORRY it took me so long to respond.  I thank you all for taking the time to respond to my post.  I dont know what to say anymore except that I am holdling on to all the wonderful hope that is here and I am blocking out the horrible realities that can occur.  I will continue to pray for my wonderful mother and for Kristine.  

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