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MD Anderson…..second opinion/consult re ILI (isolated limb INFUSION)

Forums General Melanoma Community MD Anderson…..second opinion/consult re ILI (isolated limb INFUSION)

  • Post
    Vermont_Donna
    Participant

    Hello all,

    Hello all,

    Had my third dose of Ipi. Showed my melanoma oncologist my newest melanoma tumors…pretty high up on my leg (almost near groin), which now has taken the above the knee amputation for a CURATIVE option off the table (it could remain as a palliative option down the road should my leg get horrible). If I was to consider amputation it would now be the whole leg…guess its called hip disarticulation. Pretty much NOT an option for me. I saw another surgical oncologist at DHMC who trained at MD Anderson. I have met with him twice before, the last time in 10/09 after my ILP in Boston. He had always advised going to MD Anderson and doing the infusion NOT the perfusion. But I chose to go to Mass General and do the perfusion, which we can now say didnt work. The surgeon questioned why my oncologist is having me do IPI now, a systemic treatment when the melanoma is only in my right leg, as best we can all tell, with all the scans done. He thinks I may be a good candidate for an isolated limb INFUSION, although like I said my newest tumors are pretty high up on my leg. 

    So I called MD Anderson and am going to fax my records and pictures of my leg when all that paperwork is obtained and the particular doctor who does this procedure (Dr Merrick Ross) and his team will review my records and determine if they need to see me for a consult or can they rule it out as an option (or would they have any other options to recommend). This is all if we deem the IPI trial to have "failed". I have one more Ipi infusion, then wait 4 weeks and get scanned. My surgeon said better have "Plan B" lined up now and not need it than to not have a plan and need one. Yes bio chemo is an option but he said save that for systemic disease if you can do the ILI if Ipi fails.

    So now I am looking for people's advice on navigating the MD Anderson center…..airfare, lodging, etc. I cannot afford these costs. I hear they have a travel agency there and I can look for reduced airfare and also they own a hotel, right on campus, with reduced lodging rates. Is this the way to go?? I live in northern VT, can get to Boston where I have friends who can put me on the plane there. I am pretty much a novice at flying and travel. I think I remember hearing about airlines with free airfare for cancer patients.

    On a side note, my parents, who have been so supportive of me and my treatments, are NOT in favor of me doing this, going to MD Anderson, for a second opinion/consult about ILI. I feel that I need to go, this is my LIFE!!! (Oh my doctor also said to look in the U of Pittsburgh Cancer Institute too, anyone know about this resource and also if they do ILI's here?? Their website said they do perfusions, but say nothing about infusions).

    Looking for any and all comments and advice.

    Thanks, Vermont_Donna

    stage 3a, currently doing IPI trial at DHMC, Lebanon, NH

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  • Replies
      Rocco
      Participant
      Clinical Trial ParticipantNED

      Donna,

      It's always good to have a plan B in the works when dealing with melanoma.  I have no experience with MDA, however  when I was first diagnosed in 2005, ILI was suggested as a possible treatment for me.  My doctors at DF in Boston suggested that since the mel appeared to be limited to my arm  that it might be a good option for me.  My surgical Onc at DF suggested I fax my records, etc and speak with Dr. Mary Brady at Memorial Sloan Kettering Cancer Center in NY – which I did.  For me, ILI ended up not being an option as mel appeared in my lungs and I needed a systemic treament.

      This is the link to Dr. Mary Sue Brady's page on the MSKCC web site.  Not sure if you would want to reach out to her as well as MDA…

      http://www.mskcc.org/prg/prg/bios/16.cfm 

      Wishing you the best and praying for you – I know these decisions are not easy.

      Rocco – Stage IV

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      Rocco
      Participant
      Clinical Trial ParticipantNED

      Donna,

      It's always good to have a plan B in the works when dealing with melanoma.  I have no experience with MDA, however  when I was first diagnosed in 2005, ILI was suggested as a possible treatment for me.  My doctors at DF in Boston suggested that since the mel appeared to be limited to my arm  that it might be a good option for me.  My surgical Onc at DF suggested I fax my records, etc and speak with Dr. Mary Brady at Memorial Sloan Kettering Cancer Center in NY – which I did.  For me, ILI ended up not being an option as mel appeared in my lungs and I needed a systemic treament.

      This is the link to Dr. Mary Sue Brady's page on the MSKCC web site.  Not sure if you would want to reach out to her as well as MDA…

      http://www.mskcc.org/prg/prg/bios/16.cfm 

      Wishing you the best and praying for you – I know these decisions are not easy.

      Rocco – Stage IV

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        Vermont_Donna
        Participant

        Hi Rocco,

        Thanks so much for the link. NYC is certainly do-able as far as a trip. I will call to get consult info on Monday!

        Good Luck with your treatments!

        Vermont_Donna

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        Vermont_Donna
        Participant

        Hi Rocco,

        Thanks so much for the link. NYC is certainly do-able as far as a trip. I will call to get consult info on Monday!

        Good Luck with your treatments!

        Vermont_Donna

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      ockelly
      Participant

      Donna

      You might try this contact for assistance in planning your trip to MD Anderson.

      He organizes patients consults.

      David (not sure of his last name)  (713)563-9723

      Kelly

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      ockelly
      Participant

      Donna

      You might try this contact for assistance in planning your trip to MD Anderson.

      He organizes patients consults.

      David (not sure of his last name)  (713)563-9723

      Kelly

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        Vermont_Donna
        Participant

        Thank you Kelly, for the contact info!

        Vermont_Donna

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        Vermont_Donna
        Participant

        Thank you Kelly, for the contact info!

        Vermont_Donna

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      killmel
      Participant

      Donna,

       

      So sorry to hear about your new mets.

      After showing your onc the new mets, did he give you his opinion that about if IPI is working? Just maybe IPI is working & IPI inflamed mets that were small/ or dormant???

      Has your onc suggested another systemic treatment if zIPI doesnot work like BRAF/MEK, etc

      Is your leg healing at all??/

      Stay strong.

      Jamie

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      killmel
      Participant

      Donna,

       

      So sorry to hear about your new mets.

      After showing your onc the new mets, did he give you his opinion that about if IPI is working? Just maybe IPI is working & IPI inflamed mets that were small/ or dormant???

      Has your onc suggested another systemic treatment if zIPI doesnot work like BRAF/MEK, etc

      Is your leg healing at all??/

      Stay strong.

      Jamie

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        Vermont_Donna
        Participant

        Hi Jamie,

        Yes my onc does think the ipi is showing some effect in my body, very slight, and new mets are "acceptable" in the first 12 weeks of treatment, so he is not put off by the fact that I have new mets popping up every week (probably have in excess of 50 now). I see a color change in one larger met and also a "crust" formed on a smaller one and flaked off and I think the smaller one is going away. I am BRAF negative. He talks about bio chemo being the NEXT step if Ipi fails, but would consider an ili he said. Its just not offered at the hospital I am going to. So I am researching the possible places I can go to. My leg is slooooooooooowly healing from the wider excisions, one now 7.5 months "old" and the other 3 months "old" (open wounds). I am using Santyl ointment packed in the wound with gauze, more gauze over that as the wounds leak lymph fluid and then a cotton mesh stocking over the wounds (I am allergic to ALL bandages at this point), and then my compression stocking over that!

        Thanks for asking! Thanks for your post!

        Vermont_Donna

        stage 3a

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        Vermont_Donna
        Participant

        Hi Jamie,

        Yes my onc does think the ipi is showing some effect in my body, very slight, and new mets are "acceptable" in the first 12 weeks of treatment, so he is not put off by the fact that I have new mets popping up every week (probably have in excess of 50 now). I see a color change in one larger met and also a "crust" formed on a smaller one and flaked off and I think the smaller one is going away. I am BRAF negative. He talks about bio chemo being the NEXT step if Ipi fails, but would consider an ili he said. Its just not offered at the hospital I am going to. So I am researching the possible places I can go to. My leg is slooooooooooowly healing from the wider excisions, one now 7.5 months "old" and the other 3 months "old" (open wounds). I am using Santyl ointment packed in the wound with gauze, more gauze over that as the wounds leak lymph fluid and then a cotton mesh stocking over the wounds (I am allergic to ALL bandages at this point), and then my compression stocking over that!

        Thanks for asking! Thanks for your post!

        Vermont_Donna

        stage 3a

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        Janner
        Participant

        Donna,

        I have nothing to add to help you as far as treatment…. but your comment about being allergic to adhesives did ring a note with me.  Been there, done that, and suffered.  UNTIL… I found out about skin barrier wipes from a wound care nurse.  http://global.smith-nephew.com/us/SKIN_PREP_8631.htm  Skin Prep is one I have used before, but there are others out there.  Basically, you wipe the skin with a little towelette, then apply the adhesive tape.  I went from welts to zero reaction.  There is also another wipe to remove the residual skin prep, but I haven't found that to be a real issue.  When I had major surgeries on each leg (10" incisions) – I used these wipes.  It was miraculous for me in terms ot being able to tolerate adhesives.  So, you might have figured a workaround, but please be aware this stuff can and does help.  Not the cheapest, but well worth its weight in gold if it works for you.  I started out by trying it on my inner arm.  Wiped it, put a piece of tape I know really bothered me before.  No reaction.  So then I graduated to the real thing.  I've found the wipes online or at medical supply stores.  Never seen them in any type of drug store.  Any time I go to a doc's place or somewhere I know I might have adhesive issues, I take it along.  Had a breast biopsy recently, brought my own wipe.  They used it before the adhesives and no problem.  I don't rely on anyone to have it even though some places might.

        Good luck,

        Janner

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        Janner
        Participant

        Donna,

        I have nothing to add to help you as far as treatment…. but your comment about being allergic to adhesives did ring a note with me.  Been there, done that, and suffered.  UNTIL… I found out about skin barrier wipes from a wound care nurse.  http://global.smith-nephew.com/us/SKIN_PREP_8631.htm  Skin Prep is one I have used before, but there are others out there.  Basically, you wipe the skin with a little towelette, then apply the adhesive tape.  I went from welts to zero reaction.  There is also another wipe to remove the residual skin prep, but I haven't found that to be a real issue.  When I had major surgeries on each leg (10" incisions) – I used these wipes.  It was miraculous for me in terms ot being able to tolerate adhesives.  So, you might have figured a workaround, but please be aware this stuff can and does help.  Not the cheapest, but well worth its weight in gold if it works for you.  I started out by trying it on my inner arm.  Wiped it, put a piece of tape I know really bothered me before.  No reaction.  So then I graduated to the real thing.  I've found the wipes online or at medical supply stores.  Never seen them in any type of drug store.  Any time I go to a doc's place or somewhere I know I might have adhesive issues, I take it along.  Had a breast biopsy recently, brought my own wipe.  They used it before the adhesives and no problem.  I don't rely on anyone to have it even though some places might.

        Good luck,

        Janner

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        Vermont_Donna
        Participant

        Hi Janner,

         A nurse did give me some skin prep wipes and I used them a little bit…I had switched to the mesh tube bandaging so long ago that I cant remember if the skin prep wipes "worked"…but I will try them again. Thanks for your input, I definitely appreciate it!! 

        Vermont_Donna, stage 3a, currently doing ipi

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        Vermont_Donna
        Participant

        Hi Janner,

         A nurse did give me some skin prep wipes and I used them a little bit…I had switched to the mesh tube bandaging so long ago that I cant remember if the skin prep wipes "worked"…but I will try them again. Thanks for your input, I definitely appreciate it!! 

        Vermont_Donna, stage 3a, currently doing ipi

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      killmel
      Participant

      Hi Donna,

       

      Hope ipi works for you. Any side effects??? Can you tell whether or not you see some positive changes or any clues ipi is working? What is your doctor telling you about IPI if it is working?

      Stay strong

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      killmel
      Participant

      Hi Donna,

       

      Hope ipi works for you. Any side effects??? Can you tell whether or not you see some positive changes or any clues ipi is working? What is your doctor telling you about IPI if it is working?

      Stay strong

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        Vermont_Donna
        Participant

        Hi, thanks for asking…see above post re IPI working (possibly). Keeping my fingers crossed and hopes up!

        Vermont_Donna

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        Vermont_Donna
        Participant

        Hi, thanks for asking…see above post re IPI working (possibly). Keeping my fingers crossed and hopes up!

        Vermont_Donna

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      sue i
      Participant

      Hi Donna,  sorry to hear bout you predicament. 

      I have been going to MDA since 2007 (diagnosed in 2004) and currently on IPI trial with Dr Papadopolus.  Started IPI in 2008.  It has been going terrific for me.  Several tumors have disappeared and others are still shrinking.  Will be going back jan 18 and 19 for scans and treatment.

       

      Best advise is to check out their webpage for info regarding help with various expenses.  Several local churches have accomodations also, although i have never used them, i have heard they are nice, but probably hard to get into.  There is the rotary house next to MDA connected with skywalks that a lot of people stay in.  The area motels give discounted rates and have shuttle services to MDA, but even that can be expensive for an extended stay. 

       

      Cannot help with you with the air fare info, we drive in. 

       

      MDA is a huge complex of clinics and treatment centers that one can easily get lost in.  When i first started going there, i must of have that lost sheep look because the staff was always asking if i needed help getting around.  Doctors in their white coats would escort us to our next clinic if they thought we need help.  Call it Texas hospitality.  They were tremendous.  Now my wife and I help others with that lost look get around. 

      Good luck to you in fighting this beast.  Research is giving us new options every day and you have to stay strong. 

       

      RJ in Texas

       

      ps.  I rarely post, but check out the board regularly

       

       

       

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      sue i
      Participant

      Hi Donna,  sorry to hear bout you predicament. 

      I have been going to MDA since 2007 (diagnosed in 2004) and currently on IPI trial with Dr Papadopolus.  Started IPI in 2008.  It has been going terrific for me.  Several tumors have disappeared and others are still shrinking.  Will be going back jan 18 and 19 for scans and treatment.

       

      Best advise is to check out their webpage for info regarding help with various expenses.  Several local churches have accomodations also, although i have never used them, i have heard they are nice, but probably hard to get into.  There is the rotary house next to MDA connected with skywalks that a lot of people stay in.  The area motels give discounted rates and have shuttle services to MDA, but even that can be expensive for an extended stay. 

       

      Cannot help with you with the air fare info, we drive in. 

       

      MDA is a huge complex of clinics and treatment centers that one can easily get lost in.  When i first started going there, i must of have that lost sheep look because the staff was always asking if i needed help getting around.  Doctors in their white coats would escort us to our next clinic if they thought we need help.  Call it Texas hospitality.  They were tremendous.  Now my wife and I help others with that lost look get around. 

      Good luck to you in fighting this beast.  Research is giving us new options every day and you have to stay strong. 

       

      RJ in Texas

       

      ps.  I rarely post, but check out the board regularly

       

       

       

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        Vermont_Donna
        Participant

        Hi RJ in Texas!

        Thanks so much for your unput…very helpful to me!!!!! keep up the good work!

        Vermont_Donna, stage 3a, currently doing ipi

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        Vermont_Donna
        Participant

        Hi RJ in Texas!

        Thanks so much for your unput…very helpful to me!!!!! keep up the good work!

        Vermont_Donna, stage 3a, currently doing ipi

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      JakeinNY
      Participant

      Another alternative in NY is Dr. Anna Pavlick at NYU. She seems to be up on everything and is so down to earth as well.

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      JakeinNY
      Participant

      Another alternative in NY is Dr. Anna Pavlick at NYU. She seems to be up on everything and is so down to earth as well.

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        Vermont_Donna
        Participant

        Hi, do you know if she does the isolated limb INFUSIONS?? Or I can just call too. Thanks for the resource!

        Vermont_Donna, stage3a, currently doing ipi

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        Vermont_Donna
        Participant

        Hi, do you know if she does the isolated limb INFUSIONS?? Or I can just call too. Thanks for the resource!

        Vermont_Donna, stage3a, currently doing ipi

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      LynnLuc
      Participant

      Call the American Cancer Society they have several resources available…like Mercy Medical Airlift…http://mercymedical.org/

      I had to pay for airline flights to and from for most of my clinicial trial and hotel rooms because the hosung was usually full. They offer some discounts but it was cheaper to use cheap tickets or priceline packages. I heard at MD  Anderson a lot of people take campers/RV's and live close.

      We moved to Florida so I could continue my trial and treatment at Moffitt because we couldn't afford to keep going back and forth…If you go to  the NIH you will get transportation/or mileage if you drive and 50.00 off for hotel AFTER you are accepted into the trial.

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      LynnLuc
      Participant

      Call the American Cancer Society they have several resources available…like Mercy Medical Airlift…http://mercymedical.org/

      I had to pay for airline flights to and from for most of my clinicial trial and hotel rooms because the hosung was usually full. They offer some discounts but it was cheaper to use cheap tickets or priceline packages. I heard at MD  Anderson a lot of people take campers/RV's and live close.

      We moved to Florida so I could continue my trial and treatment at Moffitt because we couldn't afford to keep going back and forth…If you go to  the NIH you will get transportation/or mileage if you drive and 50.00 off for hotel AFTER you are accepted into the trial.

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        Vermont_Donna
        Participant

        Thank you so much for this wonderful information!!!

        Vermont_Donna, stage 3a, currently doing ipi

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        LynnLuc
        Participant

        PS  The NIH will pay for airfare if you are accepted in their trial

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        LynnLuc
        Participant

        PS  The NIH will pay for airfare if you are accepted in their trial

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        Vermont_Donna
        Participant

        Thank you so much for this wonderful information!!!

        Vermont_Donna, stage 3a, currently doing ipi

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      Jim in Denver
      Participant

      Hi Donna,

      I am a patient at MDA and chose to go there becuase there was/is only one other option locally/regionally nearby, the U of Colorado.  I wanted a second opinion, so I went to MDA, partly because it is easier to get there from here.  Denver is actually out in the middle of nowhere, so all my options (west coast, east coast, south) all included getting on a plane, unlike yourself.  The cost and inconvenience of flying, lodging expenses, rental car, etc was not an issue for me, but that is not true for everybody, and it sounds like it is an issue for you.

      A Doc will recommend what he/she has most confidence in, and your Dartmouth Doc obviously has confidence in MDA having trained there.  My experience there has been very positive, and I have recommended it to others myself.  HOWEVER, there are other nationally recognized hospitals with expertise in melanoma on the east coast including Dana Farber/Mass General (your experience sounds like it may not have been positive),  Memorial Sloan Kettering (MSK) in NYC, and the National Cancer Institute (NCI) near DC.  So you have some good options that are closer than MDA, that I did and do not have. 

      One issue is whether to do ILI or not.  Though you did not say so, your current Onc (is he/she actually a specialist in melanoma?) believes that you need a systemic treatment, otherwise you would not be receiving Ipilimumab.  But getting a second sounds like a good idea, although I am not sure that you would be better off going to MDA rather than somewhere else in the Northeast (Farber, MSK, NCI or maybe Johns Hopkins).  Whether surgery would be your best option is not the same question as who would be best to do it.  A PET scan would help determine whether the mel has spread beyond the leg to internal organs or other limbs – you do not say.  Localized vs metastatic is the most important question to obtain and answer about, and you seem to have one Doc saying it is and the other not, which is not helping you make informed and intelligend decsions right now.  Thsi beast may also seem to be localized right now, but could become metastatic later, and you might not have any evidence of that right now.  So amputation may not be sufficient to stop the mel – you might not know whether it has or has not for some time.

      A surgeon's answer seems to always be surgery, of course. Radiologists are also key players in diagnosis and monitoring, but also seem to be the weakest member of your (mine and everyone else's as well) Doctor team since there is almost no continuity (different one for each scan, and they are often farmed out to India and other far off places these days) .  Anyway, you need to get copies of all scans on CDs and copies of all you records to prepare to get a second opinion.  It would be good to get one set for yourself, and prepare to send another set directly to the Doc you ultimately choose.  I agree that you should have a Plan B (and C as well), but it would also make some sense to get yout 4th Ipi infusion and scans (including whole body PET scan).  Since you seem to trust him, you might ask your Dartmouth surgeon if he can recommend another one in the Northeast.

      You have reservations about the economics of going to MDA, which are understandable.  I have mixed feelings about your situation, becausehow muchit costs money to go to MDA, seperate from any insurance considerations.  I know David can help you get scheduled quickly (he did the same for me), and I also met Dr. Ross when he removed one of my surface tumors before I started my Ipi+Temador trial at MDA last summer.  If you do go to MDA, check out Southwest Airlines (and pay the exttra $10 each way to get on the plane earlier that most of the other passengers – they have no reserved seats.  You have to book on southwest.com and fly to Hobby Airport).  You can call the Rotary House hotel adjacent to MDA directly yourself, but they can be sold out weeks in advance, so do it early.  Shuttle bus vs car rental is another issue.  Anyway, I have done this many times, and can help with more details if you want.

      I agree it would be good to get a second opinion, but suggest you seek out all high quality options that are closer first.  Maybe that doesn't help much, but maybe it does a little.  Even if you have ruled Farber/MassGeneral out, ask your surgeon or other trusted sources of information for other recommendations.  I picked the hospital first, then they helped me find a Doc.  Not sure if doing it the other way around is better or not.

      Best Wishes,

      Jim

       

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      Jim in Denver
      Participant

      Hi Donna,

      I am a patient at MDA and chose to go there becuase there was/is only one other option locally/regionally nearby, the U of Colorado.  I wanted a second opinion, so I went to MDA, partly because it is easier to get there from here.  Denver is actually out in the middle of nowhere, so all my options (west coast, east coast, south) all included getting on a plane, unlike yourself.  The cost and inconvenience of flying, lodging expenses, rental car, etc was not an issue for me, but that is not true for everybody, and it sounds like it is an issue for you.

      A Doc will recommend what he/she has most confidence in, and your Dartmouth Doc obviously has confidence in MDA having trained there.  My experience there has been very positive, and I have recommended it to others myself.  HOWEVER, there are other nationally recognized hospitals with expertise in melanoma on the east coast including Dana Farber/Mass General (your experience sounds like it may not have been positive),  Memorial Sloan Kettering (MSK) in NYC, and the National Cancer Institute (NCI) near DC.  So you have some good options that are closer than MDA, that I did and do not have. 

      One issue is whether to do ILI or not.  Though you did not say so, your current Onc (is he/she actually a specialist in melanoma?) believes that you need a systemic treatment, otherwise you would not be receiving Ipilimumab.  But getting a second sounds like a good idea, although I am not sure that you would be better off going to MDA rather than somewhere else in the Northeast (Farber, MSK, NCI or maybe Johns Hopkins).  Whether surgery would be your best option is not the same question as who would be best to do it.  A PET scan would help determine whether the mel has spread beyond the leg to internal organs or other limbs – you do not say.  Localized vs metastatic is the most important question to obtain and answer about, and you seem to have one Doc saying it is and the other not, which is not helping you make informed and intelligend decsions right now.  Thsi beast may also seem to be localized right now, but could become metastatic later, and you might not have any evidence of that right now.  So amputation may not be sufficient to stop the mel – you might not know whether it has or has not for some time.

      A surgeon's answer seems to always be surgery, of course. Radiologists are also key players in diagnosis and monitoring, but also seem to be the weakest member of your (mine and everyone else's as well) Doctor team since there is almost no continuity (different one for each scan, and they are often farmed out to India and other far off places these days) .  Anyway, you need to get copies of all scans on CDs and copies of all you records to prepare to get a second opinion.  It would be good to get one set for yourself, and prepare to send another set directly to the Doc you ultimately choose.  I agree that you should have a Plan B (and C as well), but it would also make some sense to get yout 4th Ipi infusion and scans (including whole body PET scan).  Since you seem to trust him, you might ask your Dartmouth surgeon if he can recommend another one in the Northeast.

      You have reservations about the economics of going to MDA, which are understandable.  I have mixed feelings about your situation, becausehow muchit costs money to go to MDA, seperate from any insurance considerations.  I know David can help you get scheduled quickly (he did the same for me), and I also met Dr. Ross when he removed one of my surface tumors before I started my Ipi+Temador trial at MDA last summer.  If you do go to MDA, check out Southwest Airlines (and pay the exttra $10 each way to get on the plane earlier that most of the other passengers – they have no reserved seats.  You have to book on southwest.com and fly to Hobby Airport).  You can call the Rotary House hotel adjacent to MDA directly yourself, but they can be sold out weeks in advance, so do it early.  Shuttle bus vs car rental is another issue.  Anyway, I have done this many times, and can help with more details if you want.

      I agree it would be good to get a second opinion, but suggest you seek out all high quality options that are closer first.  Maybe that doesn't help much, but maybe it does a little.  Even if you have ruled Farber/MassGeneral out, ask your surgeon or other trusted sources of information for other recommendations.  I picked the hospital first, then they helped me find a Doc.  Not sure if doing it the other way around is better or not.

      Best Wishes,

      Jim

       

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        Vermont_Donna
        Participant

        Thanks Jim for such a long and thoughtful answer. I think my melanoma oncologist suggested the ipi trial becuase he had it available and didnt know what else to offer me, having failed two rounds of radiation treatment, and some other treatments. I think he didnt offer an ILI because the ILP failed maybe and also because it is not offered at my treatment hospital. My oncology surgeon, who is the second surgeon I had met at DHMC and because he had trained at MDA I wanted to talk to him, more about what he thought about amputation but that went off the table for now, so he and I talked about regional treatment again. He questioned why I was on systemic treatment with regional disease (but my melanoma onc thought systemic was ok, especially if I had micro mets not showing up on the PET/CT scans,those have been clear except for my leg). 

        I do realize that there are closer places which offer ILI and many people have been writing to me here giving me suggestions. Now I have been wondering about do I pick the place first (reputation) and then look for a doc, or do I go with a personally recommended doc?? I am getting my records and will be preparing them to fax to the different places.

        Thanks for all your help and good luck!

        Vermont_Donna, stage 3a, currently doing ipi

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        Vermont_Donna
        Participant

        Thanks Jim for such a long and thoughtful answer. I think my melanoma oncologist suggested the ipi trial becuase he had it available and didnt know what else to offer me, having failed two rounds of radiation treatment, and some other treatments. I think he didnt offer an ILI because the ILP failed maybe and also because it is not offered at my treatment hospital. My oncology surgeon, who is the second surgeon I had met at DHMC and because he had trained at MDA I wanted to talk to him, more about what he thought about amputation but that went off the table for now, so he and I talked about regional treatment again. He questioned why I was on systemic treatment with regional disease (but my melanoma onc thought systemic was ok, especially if I had micro mets not showing up on the PET/CT scans,those have been clear except for my leg). 

        I do realize that there are closer places which offer ILI and many people have been writing to me here giving me suggestions. Now I have been wondering about do I pick the place first (reputation) and then look for a doc, or do I go with a personally recommended doc?? I am getting my records and will be preparing them to fax to the different places.

        Thanks for all your help and good luck!

        Vermont_Donna, stage 3a, currently doing ipi

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      Hi Donna,

      Dr. Douglas Tyler at Duke University, Durham, NC does isolated limb infusions:

      http://www.dukehealth.org/physicians/douglas_s_tyler

      I took my father there for a consult.  I can't say I was in love with his manner, but according to my father's physician here at UNC, he is the expert in ILI down here.  Duke is certainly a good place.

      Good luck with your decision.  I am so sorry finances have to play a part in this!

      ellen – dads daughter

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      Hi Donna,

      Dr. Douglas Tyler at Duke University, Durham, NC does isolated limb infusions:

      http://www.dukehealth.org/physicians/douglas_s_tyler

      I took my father there for a consult.  I can't say I was in love with his manner, but according to my father's physician here at UNC, he is the expert in ILI down here.  Duke is certainly a good place.

      Good luck with your decision.  I am so sorry finances have to play a part in this!

      ellen – dads daughter

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        I forgot to say that I have 2 articles written by Dr. Tyler in 2008.  They are not extremely positive about ILI, although it's possible the therapy may have improved since 2008. If I remember correctly, they were hoping ILI would be as effective as ILP, but with fewer side effects, so that they could give it to people who were not candidates for ILP due to other health issues.  However, I am sure Dr. Tyler's research has moved forward since then.

        If you would like the articles, please feel free to email me at [email protected] and I can send them to you.  

        Best wishes,

        ellen – dads daughter

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        I forgot to say that I have 2 articles written by Dr. Tyler in 2008.  They are not extremely positive about ILI, although it's possible the therapy may have improved since 2008. If I remember correctly, they were hoping ILI would be as effective as ILP, but with fewer side effects, so that they could give it to people who were not candidates for ILP due to other health issues.  However, I am sure Dr. Tyler's research has moved forward since then.

        If you would like the articles, please feel free to email me at [email protected] and I can send them to you.  

        Best wishes,

        ellen – dads daughter

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        Vermont_Donna
        Participant

        Hi Ellen, Thanks for the recommendation. What about Dr Tyler did you not like?? I would like the articles….I will email you from my email [email protected]. Thanks!

        Vermont_Donna, stage 3a, currently doing ipi

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        Hi Donna,

        I sent you some articles yesterday.  I hope I didn't overload your mail box!!

        ellen

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        Hi Donna,

        I sent you some articles yesterday.  I hope I didn't overload your mail box!!

        ellen

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        Vermont_Donna
        Participant

        Hi Ellen, Thanks for the recommendation. What about Dr Tyler did you not like?? I would like the articles….I will email you from my email [email protected]. Thanks!

        Vermont_Donna, stage 3a, currently doing ipi

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      Dawn
      Participant

      Donna

      I had to take my nine year old daughter to MDAnderson for a second opinion for melanoma in October.  We don't have a lot of money so I was looking for ways to save money.  We ended up staying about 5 days.  We flew in.  I booked flights on expedia….use any site..they are pretty much the same…but search everyday so you know what the price is and when it goes down you can book it. For transportation from the airport to the hotel,  I got in touch with Houston Ground Angels….check it out on the internet… wonderful, free service from volunteers….and very easy to use.  They pick you up and give you a free ride to your hotel.  We stayed at the MainStay Suites….wasn't probably a 5 star but it was exactly what we needed.  They do provide breakfast  in the morning and shuttle you to and from the clinic.  They also shuttle you anywhere within a 3-4 mile radius and to Hobby if you fly in/out from there.  They best thing is that the rooms are a suite (and not  a bad price either)  I have a friends and family deal with choice hotels and got my room for $50 bucks a night….see if you know anyone that has that and see if they can get you that.  The suites have  a full frig, stove top, dishes, dishwasher….it was perfect.  The hotel shuttle took us to the grocery store so we were able to buy food and make it instead of eating out all the time.  We saved so much money ….the Ground angels, the hotel cost, and the grocery food.  See if any of that works for you.  Good luck witheverything.  We ended up getting treatment at SLoan Kettering in NY, NY but have not ruled out MDAnderson for another phase if needed.  Good luck to you…..Dawn

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      Dawn
      Participant

      Donna

      I had to take my nine year old daughter to MDAnderson for a second opinion for melanoma in October.  We don't have a lot of money so I was looking for ways to save money.  We ended up staying about 5 days.  We flew in.  I booked flights on expedia….use any site..they are pretty much the same…but search everyday so you know what the price is and when it goes down you can book it. For transportation from the airport to the hotel,  I got in touch with Houston Ground Angels….check it out on the internet… wonderful, free service from volunteers….and very easy to use.  They pick you up and give you a free ride to your hotel.  We stayed at the MainStay Suites….wasn't probably a 5 star but it was exactly what we needed.  They do provide breakfast  in the morning and shuttle you to and from the clinic.  They also shuttle you anywhere within a 3-4 mile radius and to Hobby if you fly in/out from there.  They best thing is that the rooms are a suite (and not  a bad price either)  I have a friends and family deal with choice hotels and got my room for $50 bucks a night….see if you know anyone that has that and see if they can get you that.  The suites have  a full frig, stove top, dishes, dishwasher….it was perfect.  The hotel shuttle took us to the grocery store so we were able to buy food and make it instead of eating out all the time.  We saved so much money ….the Ground angels, the hotel cost, and the grocery food.  See if any of that works for you.  Good luck witheverything.  We ended up getting treatment at SLoan Kettering in NY, NY but have not ruled out MDAnderson for another phase if needed.  Good luck to you…..Dawn

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      Dawn
      Participant

      Donna

      I had to take my nine year old daughter to MDAnderson for a second opinion for melanoma in October.  We don't have a lot of money so I was looking for ways to save money.  We ended up staying about 5 days.  We flew in.  I booked flights on expedia….use any site..they are pretty much the same…but search everyday so you know what the price is and when it goes down you can book it. For transportation from the airport to the hotel,  I got in touch with Houston Ground Angels….check it out on the internet… wonderful, free service from volunteers….and very easy to use.  They pick you up and give you a free ride to your hotel.  We stayed at the MainStay Suites….wasn't probably a 5 star but it was exactly what we needed.  They do provide breakfast  in the morning and shuttle you to and from the clinic.  They also shuttle you anywhere within a 3-4 mile radius and to Hobby if you fly in/out from there.  They best thing is that the rooms are a suite (and not  a bad price either)  I have a friends and family deal with choice hotels and got my room for $50 bucks a night….see if you know anyone that has that and see if they can get you that.  The suites have  a full frig, stove top, dishes, dishwasher….it was perfect.  The hotel shuttle took us to the grocery store so we were able to buy food and make it instead of eating out all the time.  We saved so much money ….the Ground angels, the hotel cost, and the grocery food.  See if any of that works for you.  Good luck witheverything.  We ended up getting treatment at SLoan Kettering in NY, NY but have not ruled out MDAnderson for another phase if needed.  Good luck to you…..Dawn

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      Dawn
      Participant

      Donna

      I had to take my nine year old daughter to MDAnderson for a second opinion for melanoma in October.  We don't have a lot of money so I was looking for ways to save money.  We ended up staying about 5 days.  We flew in.  I booked flights on expedia….use any site..they are pretty much the same…but search everyday so you know what the price is and when it goes down you can book it. For transportation from the airport to the hotel,  I got in touch with Houston Ground Angels….check it out on the internet… wonderful, free service from volunteers….and very easy to use.  They pick you up and give you a free ride to your hotel.  We stayed at the MainStay Suites….wasn't probably a 5 star but it was exactly what we needed.  They do provide breakfast  in the morning and shuttle you to and from the clinic.  They also shuttle you anywhere within a 3-4 mile radius and to Hobby if you fly in/out from there.  They best thing is that the rooms are a suite (and not  a bad price either)  I have a friends and family deal with choice hotels and got my room for $50 bucks a night….see if you know anyone that has that and see if they can get you that.  The suites have  a full frig, stove top, dishes, dishwasher….it was perfect.  The hotel shuttle took us to the grocery store so we were able to buy food and make it instead of eating out all the time.  We saved so much money ….the Ground angels, the hotel cost, and the grocery food.  See if any of that works for you.  Good luck witheverything.  We ended up getting treatment at SLoan Kettering in NY, NY but have not ruled out MDAnderson for another phase if needed.  Good luck to you…..Dawn

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        Vermont_Donna
        Participant

        Thanks Dawn,

        That is really helpful information! How is your daughter doing??

        Vermont_Donna stage 3a, currently doing ipi

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        Vermont_Donna
        Participant

        Thanks Dawn,

        That is really helpful information! How is your daughter doing??

        Vermont_Donna stage 3a, currently doing ipi

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      Sharyn
      Participant

      Hi Donna,

      I don't know how a Canadian hospital would fit into your plans. It certainly would be closer for you. Dr. Ari Meguerditchian at Royal Victoria Hospital does ILI. I could give you his contact info if you want to email me. If that isn't an option, try applying to Angel Flight Northeast for a free flight. http://www.angelflightne.org== 

        Good luck!

      Sharyn

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      Sharyn
      Participant

      Hi Donna,

      I don't know how a Canadian hospital would fit into your plans. It certainly would be closer for you. Dr. Ari Meguerditchian at Royal Victoria Hospital does ILI. I could give you his contact info if you want to email me. If that isn't an option, try applying to Angel Flight Northeast for a free flight. http://www.angelflightne.org== 

        Good luck!

      Sharyn

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        Vermont_Donna
        Participant

        Thanks Sharyn, I will have to check how my insurance would work in Canada, or do you know? I will email you privately too. Thanks for the angelflight email too.

        Donna

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        Vermont_Donna
        Participant

        Thanks Sharyn, I will have to check how my insurance would work in Canada, or do you know? I will email you privately too. Thanks for the angelflight email too.

        Donna

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