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Re: Any Suggestions?

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  • pat.dreyer
    Hi all Back from my travels after a particularly long and tiring trip from Sydney - with the time difference, was travelling for 36 hours! Just wanted to send
    Message 1 of 8 , Jun 1, 2009
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      Hi all

      Back from my travels after a particularly long and tiring trip from Sydney - with the time difference, was travelling for 36 hours!

      Just wanted to send a note re the PUVA - a good meal before taking the psolaren (seem to remember that milk and bananas also help) - and ginger is good as well.

      Amazing that you've been clear for so many years - another round of PUVA and hopefully you'll have another long stint!

      Will respond to other posts later.
    • Lovita Crasto
      Hello Lynn, I am of Indian origin, While I was on PUVA the psoralen made be queasy too but not very often. Whenever it did my mother would squeeze half a
      Message 2 of 8 , Jun 2, 2009
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        Hello Lynn,

        I am of Indian origin, While I was on PUVA the psoralen made be queasy too but not very often. Whenever it did my mother would squeeze half a lemon, add a pinch of salt, grate some ginger and squeeze out some juice and then finally add a pinch of asafoetida (its an indian food ingredient and helps in digetion used commonly in indian food and has a pungent odor but is not spicy). I would drink this potion and I would feel very very relieved. Also feeding on a good haeavy breakfast 10 mins before the tablet consumption helped me a lot.

        Best luck and regards,
        Lovita

        --- On Sat, 5/30/09, twinks0771 <twinkslynn@...> wrote:

        From: twinks0771 <twinkslynn@...>
        Subject: [mycosisfungoidesint] Any Suggestions?
        To: mycosisfungoidesint@yahoogroups.com
        Date: Saturday, May 30, 2009, 1:17 AM

        Hi all,

        I have just been told that I have to go back on PUVA again, after a 9 year gap! My patches have been flaring up over the last year or two but now is the time to resume the PUVA. I had a feeling that would be the verdict so I had resigned myself to the fact before being told.

        Anyway, my question is - last time I had PUVA the psolaren tablets made me feel quite queasy. I know I used to eat certain foods before I took them last time which made the queasyness not so bad, but I cant remember what it was that I ate!

        Can anyone give me a reminder please or any ideas.

        Thanks

        Lynn x


      • george janiszewski
        well thks people because i too am getting ready for some new puva treatmrent ...pisses me off because in hamilton ontarion canada at this hospital i had the
        Message 3 of 8 , Jun 2, 2009
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          well thks people because i too am getting ready for some new puva treatmrent ...pisses me off because in hamilton ontarion canada at this hospital i had the puva and did the bath thing but i found out they closed the clinic ( hospital cutbacks ) so now i dont know where i'm going for the treatment...suck to think i have to travel to torionto an hour drive and back and goto work ....ohh well wish me luck
           
          thks again
          george

          --- On Tue, 6/2/09, Lovita Crasto <lovita_crasto@...> wrote:

          From: Lovita Crasto <lovita_crasto@...>
          Subject: Re: [mycosisfungoidesint] Any Suggestions?
          To: mycosisfungoidesint@yahoogroups.com
          Received: Tuesday, June 2, 2009, 9:10 AM

          Hello Lynn,

          I am of Indian origin, While I was on PUVA the psoralen made be queasy too but not very often. Whenever it did my mother would squeeze half a lemon, add a pinch of salt, grate some ginger and squeeze out some juice and then finally add a pinch of asafoetida (its an indian food ingredient and helps in digetion used commonly in indian food and has a pungent odor but is not spicy). I would drink this potion and I would feel very very relieved. Also feeding on a good haeavy breakfast 10 mins before the tablet consumption helped me a lot.

          Best luck and regards,
          Lovita

          --- On Sat, 5/30/09, twinks0771 <twinkslynn@hotmail. com> wrote:

          From: twinks0771 <twinkslynn@hotmail. com>
          Subject: [mycosisfungoidesin t] Any Suggestions?
          To: mycosisfungoidesint @yahoogroups. com
          Date: Saturday, May 30, 2009, 1:17 AM

          Hi all,

          I have just been told that I have to go back on PUVA again, after a 9 year gap! My patches have been flaring up over the last year or two but now is the time to resume the PUVA. I had a feeling that would be the verdict so I had resigned myself to the fact before being told.

          Anyway, my question is - last time I had PUVA the psolaren tablets made me feel quite queasy. I know I used to eat certain foods before I took them last time which made the queasyness not so bad, but I cant remember what it was that I ate!

          Can anyone give me a reminder please or any ideas.

          Thanks

          Lynn x




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        • Judy Jones
          George, Sorry you are going to have to travel so far for treatment. Unfortunately, there are fewer options in Canada for treatment locations. On the positive
          Message 4 of 8 , Jun 3, 2009
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            George,

            Sorry you are going to have to travel so far for treatment.  Unfortunately, there are fewer options in Canada for treatment locations.  On the positive side, you will love the nursing staff in Toronto .  Great bunch of people!

             

            Judy

             

            Judy Jones

            Cutaneous Lymphoma Foundation

            www.clfoundation.org

             

             


            From: mycosisfungoidesint@yahoogroups.com [mailto:mycosisfungoidesint@yahoogroups.com] On Behalf Of george janiszewski
            Sent: Tuesday, June 02, 2009 11:41 PM
            To: mycosisfungoidesint@yahoogroups.com
            Subject: Re: [mycosisfungoidesint] Any Suggestions?

             

            well thks people because i too am getting ready for some new puva treatmrent ...pisses me off because in hamilton ontarion canada at this hospital i had the puva and did the bath thing but i found out they closed the clinic ( hospital cutbacks ) so now i dont know where i'm going for the treatment... suck to think i have to travel to torionto an hour drive and back and goto work ....ohh well wish me luck  thks again  george


            .

          • alliance15
            Well here is what I do and it has worked fine for about 10 years....If I want the effect of a puva like light session...I will eat a couple of sticks of
            Message 5 of 8 , Jun 9, 2009
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              Well here is what I do and it has worked fine for about 10 years....If I want the effect of a "puva like" light session...I will eat a couple of sticks of celery and a carrot an hour before a session and then go to the local tanning salon for about $3.50 per session and go under the lamps... first starting out at 15 minutes then working myself up to twenty minutes over say a month period. Usually going once or twice a week until a positive response is obtained and then I back off and drop down to once or twice a month sessions....staying at the twenty minute time frame in the tanning bed. This is much cheaper, easier, more convenient and based on my schedule and it works great for me...I am still here going strong after 13 years on having MF. Now...I am never pissed off!

              Good Luck
              --- In mycosisfungoidesint@yahoogroups.com, george janiszewski <georgeyboy_111@...> wrote:
              >
              > well thks people because i too am getting ready for some new puva treatmrent ...pisses me off because in hamilton ontarion canada at this hospital i had the puva and did the bath thing but i found out they closed the clinic ( hospital cutbacks ) so now i dont know where i'm going for the treatment...suck to think i have to travel to torionto an hour drive and back and goto work ....ohh well wish me luck
              >  
              > thks again
              > george
              >
              > --- On Tue, 6/2/09, Lovita Crasto <lovita_crasto@...> wrote:
              >
              >
              > From: Lovita Crasto <lovita_crasto@...>
              > Subject: Re: [mycosisfungoidesint] Any Suggestions?
              > To: mycosisfungoidesint@yahoogroups.com
              > Received: Tuesday, June 2, 2009, 9:10 AM
              >
              >
              >
              >
              >
              >
              >
              >
              >
              >
              >
              >
              > Hello Lynn,
              >
              > I am of Indian origin, While I was on PUVA the psoralen made be queasy too but not very often. Whenever it did my mother would squeeze half a lemon, add a pinch of salt, grate some ginger and squeeze out some juice and then finally add a pinch of asafoetida (its an indian food ingredient and helps in digetion used commonly in indian food and has a pungent odor but is not spicy). I would drink this potion and I would feel very very relieved. Also feeding on a good haeavy breakfast 10 mins before the tablet consumption helped me a lot.
              >
              > Best luck and regards,
              > Lovita
              >
              > --- On Sat, 5/30/09, twinks0771 <twinkslynn@hotmail. com> wrote:
              >
              >
              > From: twinks0771 <twinkslynn@hotmail. com>
              > Subject: [mycosisfungoidesin t] Any Suggestions?
              > To: mycosisfungoidesint @yahoogroups. com
              > Date: Saturday, May 30, 2009, 1:17 AM
              >
              >
              >
              >
              > Hi all,
              >
              > I have just been told that I have to go back on PUVA again, after a 9 year gap! My patches have been flaring up over the last year or two but now is the time to resume the PUVA. I had a feeling that would be the verdict so I had resigned myself to the fact before being told.
              >
              > Anyway, my question is - last time I had PUVA the psolaren tablets made me feel quite queasy. I know I used to eat certain foods before I took them last time which made the queasyness not so bad, but I cant remember what it was that I ate!
              >
              > Can anyone give me a reminder please or any ideas.
              >
              > Thanks
              >
              > Lynn x
              >
              >
              >
              >
              >
              >
              >
              >
              >
              >
              >
              >
              >
              >
              >
              >
              >
              >
              > __________________________________________________________________
              > Ask a question on any topic and get answers from real people. Go to Yahoo! Answers and share what you know at http://ca.answers.yahoo.com
              >
            • george janiszewski
              thanks you know i just might do that....better than waiting for a month till they find out the the hec is going on.. regards george ... From: alliance15
              Message 6 of 8 , Jun 9, 2009
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                thanks you know i just might do that....better than waiting for a month till they find out the the hec is going on..
                regards george

                --- On Tue, 6/9/09, alliance15 <alliance15@...> wrote:

                From: alliance15 <alliance15@...>
                Subject: [mycosisfungoidesint] Re: Any Suggestions?
                To: mycosisfungoidesint@yahoogroups.com
                Received: Tuesday, June 9, 2009, 1:11 PM

                Well here is what I do and it has worked fine for about 10 years....If I want the effect of a "puva like" light session...I will eat a couple of sticks of celery and a carrot an hour before a session and then go to the local tanning salon for about $3.50 per session and go under the lamps... first starting out at 15 minutes then working myself up to twenty minutes over say a month period. Usually going once or twice a week until a positive response is obtained and then I back off and drop down to once or twice a month sessions.... staying at the twenty minute time frame in the tanning bed. This is much cheaper, easier, more convenient and based on my schedule and it works great for me...I am still here going strong after 13 years on having MF. Now...I am never pissed off!

                Good Luck
                --- In mycosisfungoidesint @yahoogroups. com, george janiszewski <georgeyboy_ 111@...> wrote:
                >
                > well thks people because i too am getting ready for some new puva treatmrent ...pisses me off because in hamilton ontarion canada at this hospital i had the puva and did the bath thing but i found out they closed the clinic ( hospital cutbacks ) so now i dont know where i'm going for the treatment... suck to think i have to travel to torionto an hour drive and back and goto work ....ohh well wish me luck
                >  
                > thks again
                > george
                >
                > --- On Tue, 6/2/09, Lovita Crasto <lovita_crasto@ ...> wrote:
                >
                >
                > From: Lovita Crasto <lovita_crasto@ ...>
                > Subject: Re: [mycosisfungoidesin t] Any Suggestions?
                > To: mycosisfungoidesint @yahoogroups. com
                > Received: Tuesday, June 2, 2009, 9:10 AM
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                > Hello Lynn,
                >
                > I am of Indian origin, While I was on PUVA the psoralen made be queasy too but not very often. Whenever it did my mother would squeeze half a lemon, add a pinch of salt, grate some ginger and squeeze out some juice and then finally add a pinch of asafoetida (its an indian food ingredient and helps in digetion used commonly in indian food and has a pungent odor but is not spicy). I would drink this potion and I would feel very very relieved. Also feeding on a good haeavy breakfast 10 mins before the tablet consumption helped me a lot.
                >
                > Best luck and regards,
                > Lovita
                >
                > --- On Sat, 5/30/09, twinks0771 <twinkslynn@ hotmail. com> wrote:
                >
                >
                > From: twinks0771 <twinkslynn@ hotmail. com>
                > Subject: [mycosisfungoidesin t] Any Suggestions?
                > To: mycosisfungoidesint @yahoogroups. com
                > Date: Saturday, May 30, 2009, 1:17 AM
                >
                >
                >
                >
                > Hi all,
                >
                > I have just been told that I have to go back on PUVA again, after a 9 year gap! My patches have been flaring up over the last year or two but now is the time to resume the PUVA. I had a feeling that would be the verdict so I had resigned myself to the fact before being told.
                >
                > Anyway, my question is - last time I had PUVA the psolaren tablets made me feel quite queasy. I know I used to eat certain foods before I took them last time which made the queasyness not so bad, but I cant remember what it was that I ate!
                >
                > Can anyone give me a reminder please or any ideas.
                >
                > Thanks
                >
                > Lynn x
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                >
                > ____________ _________ _________ _________ _________ _________ _
                > Ask a question on any topic and get answers from real people. Go to Yahoo! Answers and share what you know at http://ca.answers. yahoo.com
                >



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