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“Break” is over

Forums General Melanoma Community “Break” is over

  • Post
    SandraDee
    Participant

    Hi all:  This is Sandy – Buffalo.  I only changed my name b/c when the forum here changed, I was having trouble getting on so had to create a new user name. 

    Hi all:  This is Sandy – Buffalo.  I only changed my name b/c when the forum here changed, I was having trouble getting on so had to create a new user name. 

    Anyways, my "free ride" pass seems to have expired.  The clinical trial (IMC1121B) that I started almost 2 years ago and that was keeping me stable has gone south!  So has my melanoma.  So, in addition to 1 worrisome tumor in the bottom of my right lung, as well as other, smaller tumors bilaterally, I am now dealing with a. 5cm x 6xm (gosh, it's so hard seeing those large #'s) "mass" in my small intestine.  It is causing me a lot of abdominal/back pain, as well as fever and anemia.  Hemoglobin this week was a mere 6.8, so I have had 2 units of blood infused this week alone.  Also got 2 earlier in the month, so apparently there is some type of internal bleeding going on, and the docs have yet to pinpoint the location.  Has anybody heard of mel sypmtoms (fever, body aches) responding to antibiotic?   The confusing part is that my WBC is skyrocketed (more than doubled in 2 weeks, and was high to begin with), as my RBC continues to decline.  However, on antibiotics, fever goes away and WBC comes down a bit.  So, my doc seems perplexed as am I…do I have an infection on top of the new mel findings???  Sorry, I'm getting winded here.

    I'm currently being treated at Roswell Park in Buffalo, and they are suggesting possible small intestine surgery (capsule endocscopy scheduled next week to determine location of bleed), followed by Temodar, hopefully followed by ipi.  IPI of course is very questionable due to entering that treatment with a compomised small intestine. I am going to Pitts to consult with Dr. Kirkwood on Monday and hope to get a few more options/clinical trials. I am also in the midst of BRAF testing.   Bottom line, I need to start on something fast!

    Sorry I've been away so long, dear friends.  I am not one for change, and it took a lot for me to even figure out how to log on since the changes.  And, enough about me….blessings go out to Jerry, Kurt, Sharyn, JAG, (whose posts I've followed for 2 years now), King, Sue Kyser,  Charlie, Terra, James from Sydney and all of my other long lost friends.  Even though I haven't posted in months, I still check in on so many of you!

    Hugs,

    Sandy – Buffalo

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  • Replies
      bill58
      Participant

      Sandy,

      Sorry to hear about your change of events.  You are in my thoughts and prayers, as is everyone else on this board.

      I don't know about the antibiotic affecting the other symptoms.  I just started a dose of Dacarbazine today and had a prior infection around a site that was radiated one month ago.  I am taking Keflex for that, but it has only been 1 day so I don't know of any interaction on my part.

      I am learning about BRAF and Ipi and should start the Braf trial in November.  This trial has all arms getting the drug and no control arm.

      One thing I read about getting Ipi after BRAF that you should research, and I might not have the correct intestine, but there was a higher chance of getting some type of perforation in an intestine or colon or somewhere else in there for patients who had Braf and ipi.  So given your current intestinal issues, you may want to be aware of that so that you can monitor for any issues.

      Good luck.  Ipi will probably be my fall back plan if Braf fails (which it WON't, fingers crossed).  Maybe by then it will be approved by the FDA for general use instead of Compassionate use.

      Bill

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        SandraDee
        Participant

        Thanks for the quick response, Bill.  Have you already tried IL-2? 

        BRAF is looking good and I wish you the best of luck with it!  I am thrilled to reciprocate the good thoughts and prayer back to you and so many others.

        Hang Tough!

        Sandy

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        Bonnie Lea
        Participant

        Dear Sandy  I do not know if we have "met"  but I wish you the only bestus thing that can happen.  Tonight I am so down with news that I feel like i am just a mere speck in the great scheme of things. 

         

        I hope tht all goes well with you and that the everything works out.

         

        Love Bonnie Lea

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        SandraDee
        Participant

        Bonnie Lea:

        Yes, we have crossed paths a few times in the past 3 years that I've been coming here.  Don't feel like a "mere speck" Bonnie Lea.  Each one of us has the potential to make a positive impact.  Hold your head up, keep the faith strong and everything else should fall into place for us. 

        Take good care!

        Sandy

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        SandraDee
        Participant

        Bonnie Lea:

        Yes, we have crossed paths a few times in the past 3 years that I've been coming here.  Don't feel like a "mere speck" Bonnie Lea.  Each one of us has the potential to make a positive impact.  Hold your head up, keep the faith strong and everything else should fall into place for us. 

        Take good care!

        Sandy

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        Bonnie Lea
        Participant

        Dear Sandy  I do not know if we have "met"  but I wish you the only bestus thing that can happen.  Tonight I am so down with news that I feel like i am just a mere speck in the great scheme of things. 

         

        I hope tht all goes well with you and that the everything works out.

         

        Love Bonnie Lea

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        bill58
        Participant

        Sandy,

        Just happened to be on.  Always try to give whatever information i can that might be useful.  I am learning new things all the time.

        Have not tried IL2.  If I had, I could have rolled right into the BRAF trial.

        I think Ipi is fall back option B, will look at what ever clinical trials are going on after than and plan D E or F would be IL2 unless that is more promissing than the other options.  I am not looking forward to spending 5 days in the hospital with IL2 every time you need a dose, at least that is how I understand it works.

        BIll

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        bill58
        Participant

        Sandy,

        Just happened to be on.  Always try to give whatever information i can that might be useful.  I am learning new things all the time.

        Have not tried IL2.  If I had, I could have rolled right into the BRAF trial.

        I think Ipi is fall back option B, will look at what ever clinical trials are going on after than and plan D E or F would be IL2 unless that is more promissing than the other options.  I am not looking forward to spending 5 days in the hospital with IL2 every time you need a dose, at least that is how I understand it works.

        BIll

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        SandraDee
        Participant

        Thanks for the quick response, Bill.  Have you already tried IL-2? 

        BRAF is looking good and I wish you the best of luck with it!  I am thrilled to reciprocate the good thoughts and prayer back to you and so many others.

        Hang Tough!

        Sandy

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      bill58
      Participant

      Sandy,

      Sorry to hear about your change of events.  You are in my thoughts and prayers, as is everyone else on this board.

      I don't know about the antibiotic affecting the other symptoms.  I just started a dose of Dacarbazine today and had a prior infection around a site that was radiated one month ago.  I am taking Keflex for that, but it has only been 1 day so I don't know of any interaction on my part.

      I am learning about BRAF and Ipi and should start the Braf trial in November.  This trial has all arms getting the drug and no control arm.

      One thing I read about getting Ipi after BRAF that you should research, and I might not have the correct intestine, but there was a higher chance of getting some type of perforation in an intestine or colon or somewhere else in there for patients who had Braf and ipi.  So given your current intestinal issues, you may want to be aware of that so that you can monitor for any issues.

      Good luck.  Ipi will probably be my fall back plan if Braf fails (which it WON't, fingers crossed).  Maybe by then it will be approved by the FDA for general use instead of Compassionate use.

      Bill

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      King
      Participant

      Sandy,

       

      Gosh, I hope people realize that Sandra Dee is our sweet Sandy from Buffalo.

       

      Well, I guess you got the results of your upper GI since we talked earlier today.  It was so good to hear your voice.  I'm not sure on the size of the "mass"…0.5cmx6mm???  That's actually not that large but we know that's not the point.  And I don't think you've ever had a "free ride".

      And it sounds like you will have the pleasure of doing the capsule endoscopy prep again.

      You are in my thoughts and prayers.  I hope the pain is controlled and you get some answers as to what is really going on soon.  I know you're doing your research!!

      Please know that we are all in this together.  Call, email or post anytime.  Take a break from all this stuff whenever you need to.  One day at a time.  (((Sandy)))

       

      Stay Strong
      Kathie

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        SandraDee
        Participant

        Kathie:

        Yes, I had Ron go get them at the hospital.  I wish it was .5 cm x 6 mm….no, it's 5 cm x 6 cm, and that is BIG!  And, I'm scared!  The good news (I'm really digging here) is that the pain seems to be sibsiding.  I just want to be able to enjoy the weekend with my family and then full speed ahead on Monday in Pitts.  Damn this disease. 

        Thank you so much for taking the time out of your busy day to speak to me today, Kathie!  I appreciate it, and it was wonderful to hear your voice too. :)  YOU take care of you, good luck on the house and continue enjoying that precious grand-baby of yours.  "Hi" to Tim, ok?

        xo

        Sandy

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        James from Sydney
        Participant

        Hi Sandy

        sorry to hear your news. Please remember your body has in the past and will continue to respond to treatments, you just have to find the right one to knock Mel out. Michael had a Met that was left in his small Bowel  for 8 months and eventually the Operation set him back in terms of recovery and the ability to start another systemic treatment quickly. So ask if it can be removed and how long recovery time is. I have always believed it is better to operate where possible.

        If you do go down that path you might consider a couple of rounds of some treatment to shrink/slow it down before the Op. As far as options if you are  Braf positive then that is a good option offering quick results in many patients. There is an Ippi/Temador Trial that you should ask about. About the only other one i have read about is ALT801 which combines IL2  with Cisplatin, i understand the IL2 is fused with a protein that targets the Cancer and therefore a lower more tolerable dose of IL2 is used. I seem to remember that you may have responded to IL2 in the past.

        I am sending you as much positive energy as i can muster.

        best wishes

        James

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        SandraDee
        Participant

        Thanks, James.  I will go armed with questions and demanding answers this week. 

        I think and pray for you and to Michael often!  Your support means the world to me.

        Sandy

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        SandraDee
        Participant

        Thanks, James.  I will go armed with questions and demanding answers this week. 

        I think and pray for you and to Michael often!  Your support means the world to me.

        Sandy

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        James from Sydney
        Participant

        Hi Sandy

        sorry to hear your news. Please remember your body has in the past and will continue to respond to treatments, you just have to find the right one to knock Mel out. Michael had a Met that was left in his small Bowel  for 8 months and eventually the Operation set him back in terms of recovery and the ability to start another systemic treatment quickly. So ask if it can be removed and how long recovery time is. I have always believed it is better to operate where possible.

        If you do go down that path you might consider a couple of rounds of some treatment to shrink/slow it down before the Op. As far as options if you are  Braf positive then that is a good option offering quick results in many patients. There is an Ippi/Temador Trial that you should ask about. About the only other one i have read about is ALT801 which combines IL2  with Cisplatin, i understand the IL2 is fused with a protein that targets the Cancer and therefore a lower more tolerable dose of IL2 is used. I seem to remember that you may have responded to IL2 in the past.

        I am sending you as much positive energy as i can muster.

        best wishes

        James

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        SandraDee
        Participant

        Kathie:

        Yes, I had Ron go get them at the hospital.  I wish it was .5 cm x 6 mm….no, it's 5 cm x 6 cm, and that is BIG!  And, I'm scared!  The good news (I'm really digging here) is that the pain seems to be sibsiding.  I just want to be able to enjoy the weekend with my family and then full speed ahead on Monday in Pitts.  Damn this disease. 

        Thank you so much for taking the time out of your busy day to speak to me today, Kathie!  I appreciate it, and it was wonderful to hear your voice too. :)  YOU take care of you, good luck on the house and continue enjoying that precious grand-baby of yours.  "Hi" to Tim, ok?

        xo

        Sandy

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      King
      Participant

      Sandy,

       

      Gosh, I hope people realize that Sandra Dee is our sweet Sandy from Buffalo.

       

      Well, I guess you got the results of your upper GI since we talked earlier today.  It was so good to hear your voice.  I'm not sure on the size of the "mass"…0.5cmx6mm???  That's actually not that large but we know that's not the point.  And I don't think you've ever had a "free ride".

      And it sounds like you will have the pleasure of doing the capsule endoscopy prep again.

      You are in my thoughts and prayers.  I hope the pain is controlled and you get some answers as to what is really going on soon.  I know you're doing your research!!

      Please know that we are all in this together.  Call, email or post anytime.  Take a break from all this stuff whenever you need to.  One day at a time.  (((Sandy)))

       

      Stay Strong
      Kathie

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      Rebecca and Bob
      Participant

      Sandy,

       

      I'm so sorry to hear this news from you, your trial seemed to going so well for so long. I know you have small children like us and this disease just sucks. . I think James is right you do respond so there has to be one out there to work for you. Bob also did IL-2 and it took care of the lung mets. Then after IL-2 stopped working over a year later the small intestinal mets showed up (3 of them).  He did have surgery to remove them and it was to sections of his small intestine. It took him a month to get back on track and feel good.

      Would the surgery cause problems for you to get into the trial and is it an option if your other mets are staying pretty stable?

      Thinking of you and praying for you that the doctors get you on a treatment that gets rid of this disease for you.

      Rebecca

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        SandraDee
        Participant

        Rebecca:

        I think of you and Bob and am sooo thrilled that he remains NED!  Yes, it is definitely hard with small children.  If it were just me, it would be easier to accept.  I hate them seeing me sick.

        I do have some active lung mets as well, so I'm worried that if I go into surgery, they may continue to grow while I'm recouperating.  We'll see what Dr. Kirkwood in Pitts has to say tomorrow.  I will keep you all posted and continue to pray for ALL!

        Hugs,

        Sandy

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        SandraDee
        Participant

        Rebecca:

        I think of you and Bob and am sooo thrilled that he remains NED!  Yes, it is definitely hard with small children.  If it were just me, it would be easier to accept.  I hate them seeing me sick.

        I do have some active lung mets as well, so I'm worried that if I go into surgery, they may continue to grow while I'm recouperating.  We'll see what Dr. Kirkwood in Pitts has to say tomorrow.  I will keep you all posted and continue to pray for ALL!

        Hugs,

        Sandy

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      Rebecca and Bob
      Participant

      Sandy,

       

      I'm so sorry to hear this news from you, your trial seemed to going so well for so long. I know you have small children like us and this disease just sucks. . I think James is right you do respond so there has to be one out there to work for you. Bob also did IL-2 and it took care of the lung mets. Then after IL-2 stopped working over a year later the small intestinal mets showed up (3 of them).  He did have surgery to remove them and it was to sections of his small intestine. It took him a month to get back on track and feel good.

      Would the surgery cause problems for you to get into the trial and is it an option if your other mets are staying pretty stable?

      Thinking of you and praying for you that the doctors get you on a treatment that gets rid of this disease for you.

      Rebecca

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      skysar
      Participant

      Hey Sandy:

       

      I still go over in my mind our conversation a few months ago regarding the IL-2 and how you helped get me thru that horrible treatment.  I am now doing the IPI/Temador treatment at MD Anderson with Dr. Patrick Hwu.  I feel very fortunate that I was able to get into this trial with such a great doc.  MDA is absolutely amazing!

      However, I was not able to get IPI for the 2nd treatment due to a nasty rash I developed from either antibiotics or IPI.  I am taking the Temador  for 4 nights and my next treatment along with scans is scheduled for 10/20.  

      I hate to hear what everyone goes thru on this board and I pray everyday that everyone will "Beat the Beast".

      Keep in touch.

      Sue Kysar

      Hotlanta

       

       

       

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        SandraDee
        Participant

        Hi Sue:

        I think of you often too!  I'm so glad you are in the best of care at MD Anderson!  Roswell here in Buffalo is trying to talk me into Temador (alone), and I'm just not sold.  I've heard ipi + Temodar brings great results.  I know you're on the right track, I can feel it.

        Hugs!

        Sandy

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        SandraDee
        Participant

        Hi Sue:

        I think of you often too!  I'm so glad you are in the best of care at MD Anderson!  Roswell here in Buffalo is trying to talk me into Temador (alone), and I'm just not sold.  I've heard ipi + Temodar brings great results.  I know you're on the right track, I can feel it.

        Hugs!

        Sandy

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      skysar
      Participant

      Hey Sandy:

       

      I still go over in my mind our conversation a few months ago regarding the IL-2 and how you helped get me thru that horrible treatment.  I am now doing the IPI/Temador treatment at MD Anderson with Dr. Patrick Hwu.  I feel very fortunate that I was able to get into this trial with such a great doc.  MDA is absolutely amazing!

      However, I was not able to get IPI for the 2nd treatment due to a nasty rash I developed from either antibiotics or IPI.  I am taking the Temador  for 4 nights and my next treatment along with scans is scheduled for 10/20.  

      I hate to hear what everyone goes thru on this board and I pray everyday that everyone will "Beat the Beast".

      Keep in touch.

      Sue Kysar

      Hotlanta

       

       

       

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      MaryD
      Participant

      Hi Sandy,

      So good to see you post – but NOT under these circumstances!   I'm so sorry you have been going through all this but I know are gearing up to fight and we are all behind you.  Great that you are getting Braf tested and also seeing Dr. Kirkwood so that you can get all the options in front of you and choose from there.

      There is lots of progress being made and I know you will have a treatment option asap to get on top of this.  Just glad to hear the pain is better and that you are focusing on enjoying this weekend with your family.

      I am sending you lots of love, hugs, and prayers and will be thinking of you .. .

      Mary

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      MaryD
      Participant

      Hi Sandy,

      So good to see you post – but NOT under these circumstances!   I'm so sorry you have been going through all this but I know are gearing up to fight and we are all behind you.  Great that you are getting Braf tested and also seeing Dr. Kirkwood so that you can get all the options in front of you and choose from there.

      There is lots of progress being made and I know you will have a treatment option asap to get on top of this.  Just glad to hear the pain is better and that you are focusing on enjoying this weekend with your family.

      I am sending you lots of love, hugs, and prayers and will be thinking of you .. .

      Mary

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      MaryD
      Participant

      Hi Sandy,

      So good to see you post – but NOT under these circumstances!   I'm so sorry you have been going through all this but I know are gearing up to fight and we are all behind you.  Great that you are getting Braf tested and also seeing Dr. Kirkwood so that you can get all the options in front of you and choose from there.

      There is lots of progress being made and I know you will have a treatment option asap to get on top of this.  Just glad to hear the pain is better and that you are focusing on enjoying this weekend with your family.

      I am sending you lots of love, hugs, and prayers and will be thinking of you .. .

      Mary

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      MaryD
      Participant

      Hi Sandy,

      So good to see you post – but NOT under these circumstances!   I'm so sorry you have been going through all this but I know are gearing up to fight and we are all behind you.  Great that you are getting Braf tested and also seeing Dr. Kirkwood so that you can get all the options in front of you and choose from there.

      There is lots of progress being made and I know you will have a treatment option asap to get on top of this.  Just glad to hear the pain is better and that you are focusing on enjoying this weekend with your family.

      I am sending you lots of love, hugs, and prayers and will be thinking of you .. .

      Mary

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        MariaH
        Participant

        Sandy,

        It is good to see you post, but sorry it's under such cruddy circumstances.  I have not been on the board in awhile either, and also had to change my username under the new system.  But I thought of you last week as David went in to see Dr. Kahne for a checkup at Roswell (all scans are clear to date).  I hope you find a treatment that is successful for you.  You have been an inspiration to Dave and I from the very beginning, and I know that you will give this next round all you got – no matter what the treatment it is.  Keep your head up!!

        Best wishes always,

        Dave & Maria

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        MariaH
        Participant

        Sandy,

        It is good to see you post, but sorry it's under such cruddy circumstances.  I have not been on the board in awhile either, and also had to change my username under the new system.  But I thought of you last week as David went in to see Dr. Kahne for a checkup at Roswell (all scans are clear to date).  I hope you find a treatment that is successful for you.  You have been an inspiration to Dave and I from the very beginning, and I know that you will give this next round all you got – no matter what the treatment it is.  Keep your head up!!

        Best wishes always,

        Dave & Maria

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      Jim M.
      Participant

      Sandy,

       My heart sank upon reading your news. I don't have any good advice on treatments except Ipi.I'm there with you in spirit as we all are. I'm sending positive thoughts and prayers for complete healing. You are such a wonderful person and an inspiration to me.

       God Bless,

       Jim M.

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      Jim M.
      Participant

      Sandy,

       My heart sank upon reading your news. I don't have any good advice on treatments except Ipi.I'm there with you in spirit as we all are. I'm sending positive thoughts and prayers for complete healing. You are such a wonderful person and an inspiration to me.

       God Bless,

       Jim M.

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      lhaley
      Participant

      Sandy,

      I'm so sorry your having to deal with more tumors!  I don't have any treatment options but a few years ago when they were weighing the option of removing my bladder the worry was the recouperation time. If it quickly went to other places would I be strong enough to  go through any treatments.  The Drs. opted to just remove the tumor alone and wait and watch. When it came back it was caught very tiny. That was over a year ago and the bladder remains clear – wish that could be said for other areas.

      My Drs. have always felt that surgery when possible is the best route to go. Make sure to ask a few opinions on recouperation time!!  I have found that often the nurses give me a more accurate time then the Dr does!

      Sending hugs and wishes that you find an answer quickly!

      Linda

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      lhaley
      Participant

      Sandy,

      I'm so sorry your having to deal with more tumors!  I don't have any treatment options but a few years ago when they were weighing the option of removing my bladder the worry was the recouperation time. If it quickly went to other places would I be strong enough to  go through any treatments.  The Drs. opted to just remove the tumor alone and wait and watch. When it came back it was caught very tiny. That was over a year ago and the bladder remains clear – wish that could be said for other areas.

      My Drs. have always felt that surgery when possible is the best route to go. Make sure to ask a few opinions on recouperation time!!  I have found that often the nurses give me a more accurate time then the Dr does!

      Sending hugs and wishes that you find an answer quickly!

      Linda

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      killmel
      Participant

      Sandy,

       

      I am so sorry about your news but if anyone can win over mel, it is you.

       

      I am interested in knowing about your  "capsule endocscopy" scheduled next week. How does that procedure work??? Do most insurance pay for capsule endocscopy??? Has anyone else had experience will pill cam, I think that is what it is called.

       

      Thanks for any feedback  about "capsule endocscopy"?

       

      Sandy, you will be in my thoughts…good luck

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      killmel
      Participant

      Sandy,

       

      I am so sorry about your news but if anyone can win over mel, it is you.

       

      I am interested in knowing about your  "capsule endocscopy" scheduled next week. How does that procedure work??? Do most insurance pay for capsule endocscopy??? Has anyone else had experience will pill cam, I think that is what it is called.

       

      Thanks for any feedback  about "capsule endocscopy"?

       

      Sandy, you will be in my thoughts…good luck

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      dian in spokane
      Participant

      Sandy,

      sorry to hear that things are getting worse for you. BUT>.glad to read further down in this thread that your pain is subsiding. I hope you get a good response to your next step.

      Please keep us posted.

      dian in spokane

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      dian in spokane
      Participant

      Sandy,

      sorry to hear that things are getting worse for you. BUT>.glad to read further down in this thread that your pain is subsiding. I hope you get a good response to your next step.

      Please keep us posted.

      dian in spokane

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      Sharyn
      Participant

      Sandy!!! There you are!!! I've been wondering where you were! So nice to hear from you, but I'm not so happy about your news.  I have a tumor in my lung too, but I'm hoping the Ipi will take care of it. (Started Sept 23, and so far, so good for side effects.) The mass in your intestine is another story. Your anemia is likely caused by internal intestinal bleeding, so the sooner you get that taken care of, the better. Roswell is one of the best places around, and if you're going to see Kirkwood, better again. I had the BRAF test done, but mine was wild-type (ie, normal), same for C-KIT. But I do have the NRAS mutation, for which, as far as I know, there is no treatment  — yet. (We always live in hope!) I also had a case of anemia (hemoglobin 7.6) and had to have a transfusion before starting Ipi. But when I got the pathology back from my mastectomy, it said there was eveidence of hemorrhaging, so bingo! I guess that was the cause.

      You asked about antibiotics helping with mel. The mass in my breast was about the size of a baseball, and I developed a huge infection on the side of my  breast. It protruded like a golf ball, eventually ruptured, and spewed out … well, you don't want to know, but it was GROSS!!. Anyway, my Dr prescribed Cephalex for 10 days, and an anti-inflammatory/pain killer. It helped with the symptoms of infection, but of course did nothing to fight the tumor itself. (If only it were that easy!!) Also, my WBC was high too, which stands to reason, given the huge infection I had. So I guess the only difference between our experiences is that mine was on the surface and easy to get at, but yours is internal and will require much more invasive surgery. I don't envy you, my friend, but I know you'll get through it, bounce back quickly, and have your dukes up, ready for the next battle. I agree with you that your compromised GI system may make Ipi high risk for you, but there are lots of other options. You have the best mel specialists in your corner, so I'm sure they'll come up with something effective.

      Now that you've figured out how to use the new board, don't be such a stranger! Keep us updated on your visit with Kirkwood, the results of your BRAF test, and any decisions you make for surgery and/or treatment. Hang in there, girl! You've jumped some pretty big hurdles before, and I'm sure you can do it again. Lots of positive energy coming down the pipes from Newfoundland to Buffalo.

      Hugs from your Newfie girlfriend

      Sharyn

      Stage IV

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      Sharyn
      Participant

      Sandy!!! There you are!!! I've been wondering where you were! So nice to hear from you, but I'm not so happy about your news.  I have a tumor in my lung too, but I'm hoping the Ipi will take care of it. (Started Sept 23, and so far, so good for side effects.) The mass in your intestine is another story. Your anemia is likely caused by internal intestinal bleeding, so the sooner you get that taken care of, the better. Roswell is one of the best places around, and if you're going to see Kirkwood, better again. I had the BRAF test done, but mine was wild-type (ie, normal), same for C-KIT. But I do have the NRAS mutation, for which, as far as I know, there is no treatment  — yet. (We always live in hope!) I also had a case of anemia (hemoglobin 7.6) and had to have a transfusion before starting Ipi. But when I got the pathology back from my mastectomy, it said there was eveidence of hemorrhaging, so bingo! I guess that was the cause.

      You asked about antibiotics helping with mel. The mass in my breast was about the size of a baseball, and I developed a huge infection on the side of my  breast. It protruded like a golf ball, eventually ruptured, and spewed out … well, you don't want to know, but it was GROSS!!. Anyway, my Dr prescribed Cephalex for 10 days, and an anti-inflammatory/pain killer. It helped with the symptoms of infection, but of course did nothing to fight the tumor itself. (If only it were that easy!!) Also, my WBC was high too, which stands to reason, given the huge infection I had. So I guess the only difference between our experiences is that mine was on the surface and easy to get at, but yours is internal and will require much more invasive surgery. I don't envy you, my friend, but I know you'll get through it, bounce back quickly, and have your dukes up, ready for the next battle. I agree with you that your compromised GI system may make Ipi high risk for you, but there are lots of other options. You have the best mel specialists in your corner, so I'm sure they'll come up with something effective.

      Now that you've figured out how to use the new board, don't be such a stranger! Keep us updated on your visit with Kirkwood, the results of your BRAF test, and any decisions you make for surgery and/or treatment. Hang in there, girl! You've jumped some pretty big hurdles before, and I'm sure you can do it again. Lots of positive energy coming down the pipes from Newfoundland to Buffalo.

      Hugs from your Newfie girlfriend

      Sharyn

      Stage IV

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      acyr
      Participant

      Hi Sandy,

      So sorry you are having another round of this – you were doing an amazing job of keeping it at bay – it gives hope to all of us. You are a thrivor – not just a survivor and you will overcome this too.  You have options and please know that I am thinking of you often – even though I don't get much chance to visit the site as I am so busy trying to get the melonoma group up and running in Canada.

      Your friend in TO

      Annette

      IIIB

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      acyr
      Participant

      Hi Sandy,

      So sorry you are having another round of this – you were doing an amazing job of keeping it at bay – it gives hope to all of us. You are a thrivor – not just a survivor and you will overcome this too.  You have options and please know that I am thinking of you often – even though I don't get much chance to visit the site as I am so busy trying to get the melonoma group up and running in Canada.

      Your friend in TO

      Annette

      IIIB

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      KellieSue
      Participant

      So sorry to hear about you recurrances!

      I finished ALT-801 trial in July. Any interest in that? I've had good results. Tumor reduction and shrinkage.

      Kellie(from Iowa) Stage IV

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      KellieSue
      Participant

      So sorry to hear about you recurrances!

      I finished ALT-801 trial in July. Any interest in that? I've had good results. Tumor reduction and shrinkage.

      Kellie(from Iowa) Stage IV

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