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roll call for leptomeningial mets – juist me & Kevin from Atl?

Forums Caregiver Community roll call for leptomeningial mets – juist me & Kevin from Atl?

  • Post
    Amy Busby
    Participant

      I was wondering if we  had any other patients / lurkers / caregivers dealing with leptomeningial mets.  I know Kevin from Atl and I have them, right?  Hope you’re doing well Kevin – I’d love an update when you feel like it.  We can compare notes on my intrathecial IL2 vs. your ipi plan.  Have you been able to continue that in TN?

      I was wondering if we  had any other patients / lurkers / caregivers dealing with leptomeningial mets.  I know Kevin from Atl and I have them, right?  Hope you’re doing well Kevin – I’d love an update when you feel like it.  We can compare notes on my intrathecial IL2 vs. your ipi plan.  Have you been able to continue that in TN?

      I am still at once a week rounds (one day admissions inpatient each week for the dose).  But I am getting close to moving to once every two weeks.  At least that’s MY plan, lol.  Dr. Papa may have other ideas.  I know he’s had a crop of patients who have had some success with this.  I’d love to hear from some others who have done this.

      The treatment is definitely tolerable in comparison to bio chem.  Of course with bio chem as the standard by which all are judged it’s pretty hard to imagine ANYTHING that wouldn’t rate as "well, at least it isn’t bio chem!".  I stay in patient for 23 hours and then have a few days at home as a vomitting, moaning vegetable, then a few days of more normal couch potato "at least she’s here" kinda days.  Then if I’m lucky I have a day or two of "good" productive unmedicated days.  Just in time to start all over!  If I go to another week off then it will be great! 

      Side effects are pressure headaches, muscle aches, severe dry mouth, vision changes, naseua, dizziness, etc.    Now I think it may be screwing with my hearing – everything sounds muffled, like when you water in your ears.  Or have ear plugs in so you hear your own voice REALLY loudly in your ears and have no idea if you’re volume appropriate or shouting at people.

      I am so thankful that this treatment seems to be working.  Last MRI showed some shrinking of the LMD and everything else is still stable.  No luck getting back on the GSK but so far so good with the other body systems.  So that issue is on the backburner for now.

      Thanks again to all my wonderful MPIP buddies for yyour love, encouragement and prayers.  Sorry so bad about keeping my CarePage and facebook updated.  And don’t even get me started on THIS debacle.  I’m trying to get used to it but hate all the changes and hope we can all keep each other up to date on the latest developments.

      Love,

      Amy

       

    Viewing 5 reply threads
    • Replies
        King
        Participant

           Amy,

          Thanks for the update.  You are one very brave and strong warrior!  Thanks for sharing your experience.  I hope you can go to every other week treatments as well.  I can imagine that would make a huge difference in your quality of life.

          One day at a time.

          Stay Strong

          King

          Stage IV 7/05 Liver mets

          Kevin from Atlanta
          Participant

            Hello Amy,

            I got lucky. Although I have met along the spine, they have not entered the spinal fliud. 2 onc and the radiologist all thought it would have been in the spine due to the thick fluid surrounding the brain. I had 5 days of WBR. I just took treatment 3 of 4 today on Ipi. No serious side effects yet. i did get a intestional ct scan recently. More mets there and some have grown from 1 CM to 4 CM. I took morphine for several days really screwed up my up severe nausea and constipatiion. That is why I got the CT scan, I was afraid of blockage. Other than peeling on my feet and hands I really have not had a severe side effects from Ipi, which is bad. The more severe the side effcts from Ipi, it increases the chances you will be a responder.

            I am glad I did not have to do the Ommaya treatment, the Ipi is much easier. I still have a high chance of mets in the spine.

             

            JMart
            Participant

              Amy,

               

              My best friend is battling breast cancer that has spread to her brain and spinal fluid.  She has had two rounds of radiation as well as the ommaya port.  Methotrexate was delivered through the port.  Her latest scans were good showing shrinkage to the brain lesions as well as no evidence of cancer left in the spinal fluid.  She is putting up a good fight.

              I have always followed your posts and root for you along the way as I keep track of my pal, too.  wishing you well.

              Janet

               

               

               

               

               

               

              Wife of Carl
              Participant

                Amy,

                Thanks for the update.  I am glad to hear that there has been evidence of a response from the treatments.  This must make is a little easier to do the treatments…knowing that they are doing some good.  I hope that you will soon be able to go to the every two week schedule.  I have been thinking of you and I want you to know that you are in my prayers.

                Pat

                Carver
                Participant

                  Dear Amy,

                  Thanks for the update. I am so glad that you have been responding so well to treatment although of course I hate you having to go through so much. You are in my thoughts, heart and prayers. As ever, Carver

                  Sherron
                  Participant

                    Hey, Amy,just dropping in to say Hello….It is good to hear from you.  Thinking of you daily! Keep your fighting spirit!

                    Take Care,

                    Sherron, wife to Jim

                     

                     

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