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Donna in VT
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Donna in VT

› Forums › General Melanoma Community › Donna in VT

  • Post
    • July 11, 2011 at 3:09 pm
    ValinMtl
    Participant

      Hey Donna, haven't seen your name posted recently.  I trust all is well.  Just to let you know that I purchased the solaris tribute garment.  What a blessing…it saves my husband from wrapping my leg daily.  I can put it on myself!  Hopefully, the tumors will shrink and I'll be able to get back into regular 30/40 garment but for now I use the solaris tribute garment almost daily and nightly.  Quite expensive though!!  $1600…thank goodness, hubby's health insurance covers 90% although only up to $50,000 and that has gone down significantly du

      Hey Donna, haven't seen your name posted recently.  I trust all is well.  Just to let you know that I purchased the solaris tribute garment.  What a blessing…it saves my husband from wrapping my leg daily.  I can put it on myself!  Hopefully, the tumors will shrink and I'll be able to get back into regular 30/40 garment but for now I use the solaris tribute garment almost daily and nightly.  Quite expensive though!!  $1600…thank goodness, hubby's health insurance covers 90% although only up to $50,000 and that has gone down significantly during the past 3 years with all the meds and support hose.  Val xx

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    • Replies
        • July 16, 2011 at 12:26 pm
        Vermont_Donna
        Participant

          Hi Val,

            Well I have been missing in action from this board….with two kids home from college, my internet usage/access on my computer is being used up (only have so much access per my monthly fee to the satellite company, and I already upped it to the highest package).So my hotmail and MPIP, which need a fast connection just doenst work. You can always email me at [email protected]….somehow my gmail works.

            Well I am glad that you got the Solaris garment….its fabulous….does more for me than I think my compression stocking that i wear in the daytime…that being said, when I go with out it, my leg does swell up around the ankle especially and feels "funny". Pricey things arent they??

          So where are you at with NIH?? I read Bruce in NH's disappointing news…

          Hugs,

          Donna

          ps are you back in Canada?? Fabulous weather we are having eh?

            • July 16, 2011 at 11:21 pm
            ValinMtl
            Participant

              Good to hear from you.  Yeah, Bruce's news was a set-back, so close!!  The board can bring you down for a while when you hear something like that.  I pray he finds good treatment for his brain mets. 

              Well, I had my surgery on July 7th, they took two lymph nodes from the left groin. Went well and drain was put in place, it comes out tomorrow.  I have always said the problem with the other surgeries was that the drains came out too early.  My stitches look beautiful and my drain is at 10 ml per day which is quite low now.

              Anyways, my tumors are in the lab and they are working their miracles..the white cells are growing according to my doctor.  I have to fly back down on July 24th to 28th for another colonoscopy since up here they didn't take a biopsy and the doctors down there are worried about my hemmorroids, could be a result of ipi treatment and that would have to be corrected first before drugs, hopefully not. Plus 2-day stress test they did up here did not include a specific result they want, so I'm going there to have it.  THEN (dear God, please let me be eligible after that – this is causing me stress!!) I will be called back down for drug treatment..won't know what arm I am on until they advise me (Total Body Radiation or not). 

              Enjoy the kids being home!!   Val xx

              • July 16, 2011 at 11:31 pm
              killmel
              Participant

                Valin,

                 Do you have to meet a criteria to have so many tumors & the tumors have to be a certain size before you can get into the trial??? I am sure others might also be interested because the trial sounds like a great trial.

                How many subqs do you have & sizes.

                I pray you get into the trial.

                God Bless,

                Mary

                 

                • July 17, 2011 at 3:04 am
                ValinMtl
                Participant

                  Hi Mary,

                  I replied to you in an earlier 'string'…here's what I wrote, hope it helps.  Yes, I think it is a promising trial..hope it works!! 

                  Re: Back from NIH – round 1

                  ValinMtl – (7/11/2011 – 10:57am)

                  Hi Mary

                  Yep, you're right, it's not a piece of cake.  I fully realize that after reading Warren's blog,,http://wgalinat.blogspot.com/   but I really have a good feeling that this might be the fit for me.

                  I had two masses (lymph nodes) in left groin that they removed but my sub-qs are pretty nasty on the upper right thigh.  One is 10 x 7 mm with bleeding and the other is 7 x 5 mm ..I also have about 5 smaller  ones popping up in the same vicinity so something has to be done quickly.

                  As far as responding, like ipi/yervoy..some respond quickly and some are slower. Unlike most clinical trials where the pharmaceutical companies sponsor 1000s, the trials at NIH are more limited.  Warren's trial had 25 patients, this new one has 112 divided into two arms..one with total body radiation, the other without.  I was told a number of responders in Warren's trial but I want to confirm it next time I am down…it was quite high and I think it was 'complete' responders but I don't want to say numbers until I verify, I wouldn't want to mislead anybody.    Val xx

                  • July 21, 2011 at 12:45 pm
                  Vermont_Donna
                  Participant

                    Best of luck Val, I'll be thinking of you!

                    Hugs,

                    Vermont_Donna

                    • July 21, 2011 at 12:45 pm
                    Vermont_Donna
                    Participant

                      Best of luck Val, I'll be thinking of you!

                      Hugs,

                      Vermont_Donna

                      • July 17, 2011 at 3:04 am
                      ValinMtl
                      Participant

                        Hi Mary,

                        I replied to you in an earlier 'string'…here's what I wrote, hope it helps.  Yes, I think it is a promising trial..hope it works!! 

                        Re: Back from NIH – round 1

                        ValinMtl – (7/11/2011 – 10:57am)

                        Hi Mary

                        Yep, you're right, it's not a piece of cake.  I fully realize that after reading Warren's blog,,http://wgalinat.blogspot.com/   but I really have a good feeling that this might be the fit for me.

                        I had two masses (lymph nodes) in left groin that they removed but my sub-qs are pretty nasty on the upper right thigh.  One is 10 x 7 mm with bleeding and the other is 7 x 5 mm ..I also have about 5 smaller  ones popping up in the same vicinity so something has to be done quickly.

                        As far as responding, like ipi/yervoy..some respond quickly and some are slower. Unlike most clinical trials where the pharmaceutical companies sponsor 1000s, the trials at NIH are more limited.  Warren's trial had 25 patients, this new one has 112 divided into two arms..one with total body radiation, the other without.  I was told a number of responders in Warren's trial but I want to confirm it next time I am down…it was quite high and I think it was 'complete' responders but I don't want to say numbers until I verify, I wouldn't want to mislead anybody.    Val xx

                        • July 16, 2011 at 11:31 pm
                        killmel
                        Participant

                          Valin,

                           Do you have to meet a criteria to have so many tumors & the tumors have to be a certain size before you can get into the trial??? I am sure others might also be interested because the trial sounds like a great trial.

                          How many subqs do you have & sizes.

                          I pray you get into the trial.

                          God Bless,

                          Mary

                           

                          • July 16, 2011 at 11:21 pm
                          ValinMtl
                          Participant

                            Good to hear from you.  Yeah, Bruce's news was a set-back, so close!!  The board can bring you down for a while when you hear something like that.  I pray he finds good treatment for his brain mets. 

                            Well, I had my surgery on July 7th, they took two lymph nodes from the left groin. Went well and drain was put in place, it comes out tomorrow.  I have always said the problem with the other surgeries was that the drains came out too early.  My stitches look beautiful and my drain is at 10 ml per day which is quite low now.

                            Anyways, my tumors are in the lab and they are working their miracles..the white cells are growing according to my doctor.  I have to fly back down on July 24th to 28th for another colonoscopy since up here they didn't take a biopsy and the doctors down there are worried about my hemmorroids, could be a result of ipi treatment and that would have to be corrected first before drugs, hopefully not. Plus 2-day stress test they did up here did not include a specific result they want, so I'm going there to have it.  THEN (dear God, please let me be eligible after that – this is causing me stress!!) I will be called back down for drug treatment..won't know what arm I am on until they advise me (Total Body Radiation or not). 

                            Enjoy the kids being home!!   Val xx

                          • July 16, 2011 at 12:26 pm
                          Vermont_Donna
                          Participant

                            Hi Val,

                              Well I have been missing in action from this board….with two kids home from college, my internet usage/access on my computer is being used up (only have so much access per my monthly fee to the satellite company, and I already upped it to the highest package).So my hotmail and MPIP, which need a fast connection just doenst work. You can always email me at [email protected]….somehow my gmail works.

                              Well I am glad that you got the Solaris garment….its fabulous….does more for me than I think my compression stocking that i wear in the daytime…that being said, when I go with out it, my leg does swell up around the ankle especially and feels "funny". Pricey things arent they??

                            So where are you at with NIH?? I read Bruce in NH's disappointing news…

                            Hugs,

                            Donna

                            ps are you back in Canada?? Fabulous weather we are having eh?

                        Viewing 1 reply thread
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