Melanoma Dr. recommending Interferon or clinical trial of IPI vs Interferon that is due to open up any time

This topic has 32 replies, 7 voices, and was last updated 13 years, 9 months ago by theonlydrea.

Post

- March 28, 2011 at 5:25 am
- Quote
gabsound
Participant
Hi,

The first Oncologist I saw was not to keen on Interferon, was suggesting watch and wait, and going to check with colleague regarding clinical trials.

Hi,

The first Oncologist I saw was not to keen on Interferon, was suggesting watch and wait, and going to check with colleague regarding clinical trials.

I opted to meet with Dr. Samlowski (he seems to be the Melanoma guy for Las Vegas) personally. I'm glad I did-he was very informative and much more comfortable discussing melanoma, statistics and treatments (not that I remember everything he said). He is suggesting interferon. The high dose phase for sure, and for as long as I can take take it the 3 times a week injections. He says it's tough, but they will help me get through it. He thinks it for sure prolongs time to progression of disease and therefore it is prolonging overall survival. He thinks in my situation ( Stage 3B with an ulcerated lesion) it could improve my odds by 10-20 percent. I'm going to quote him he said "we keep running this horse, because it keeps winning". He is also optimistic about IPI-he says he has used it for years and he has patients with years of no progression in their disease. He said a trial is due to open very soon-early April.

After coming home I read all the news of Yervoy being approved (on this board) and happened to read the patient insert (link posted by another helpful member on this board). Yikes!!!! Some of the potential immune related adverse events sound pretty scary. Some irreversible and some even causing death. Tonight I looked up Intron and found some good ones in there as well.

My head is spinning-all the reading I do seems to make me more confused. Is there another choice I should be asking him about? Has anyone done both Interferon and IPI-is one easier than the other? I wouldn't get to choose if I'm in the clinical trial-it's randomized between the two. I meet with him again in a week. I also need to get a brain MRI, my PET scan was negative except for some reaction probably related to surgery and inflammation as it was only 3 weeks post surgery.

From what I have read on here-you have only so much time post surgery to get started on Interferon and some clinical trials.

I have to say though, I think I'm feeling better about doing something vs nothing. I reread my posts and they sound so jumbled up-so many of you post such eloquent coherent words! It has been so informative reading all the posts and I'm so thankful that you all have been so generous with your first hand knowledge about this disease. It is overwhelming, but I'm going to fight it!!

Julie in Las Vegas

Viewing 7 reply threads

Replies

- - March 28, 2011 at 12:23 pm
  - Quote
  jim Breitfeller
  Participant
  Julie,
  
  I did interferon, but the cancer was intransit and I relapsed. If your tumor burden is very, very low, I would opt for IFN (Interferon) instead of a wait and see approach. If your Tumor burden is high, I would try another trial.
  
  There is a paper published 2005 called, "Newfound roadblock to interferon effectiveness against malignant melanoma".
  
  Researchers have uncovered a significant contributing factor to interferon resistance of malignant melanoma cells. The finding represents a step forward in understanding the molecular events that govern the growth of this type of cancer and the changes in gene expression and cellular signaling that underlie resistance to established therapies.
  
  Malignant melanoma is the deadliest form of skin cancer, and if not treated successfully, it can spread to affect the liver, lungs, or brain. Chemotherapy fights the disease with limited efficiency, and the use of interferon has become the most established immunotherapy for advanced-stage melanoma. However, melanoma tumors often develop a resistance to the drug, posing one of the major obstacles in the clinical treatment of this cancer.
  
  Now Professor Manfred Schartl and Dr. Claudia Wellbrock, scientists at the Universityof Werzburg, believe they have an explanation for how this interferon resistance is acquired. They have found that when a gene called STAT5 is too active in melanoma cells, it can counteract the anti-cancer effect of interferon. Interferon normally impedes the growth of cancer cells, whereas STAT5 is thought to act to promote cellular growth.
  
  The new work, published by Professor Schartl and his colleagues in Current Biology, shows that interferon actually activates STAT5 in melanoma cells but that under normal conditions, this does not interfere with the inhibitory potential of the drug. However, when cancer cells posses too much STAT5 activity to begin with, the further activation of STAT5 function by interferon induces a mechanism that blocks the ability of the drug to effectively inhibit growth.
  
  Confirming this initial finding, the researchers found that when they inhibited STAT5 in interferon-resistant melanoma cells, they were able to restore the effectiveness of interferon. This demonstrates the relevance of STAT5 and its contribution to the behavior of melanoma cells in the late stage of the disease.
  
  The findings explain the frequent failure of interferon therapies and thus further our understanding of melanoma in its late, and most aggressive, stage. In the future, a routine analysis of the STAT5 status in melanoma patients might help to improve and personalize therapies."
  
  Bottom Line is,
  
  if you have high tumor burden with stat5 activity, IFN increases that activity and helps differentiate the T-cells toward T regularatory cells (Tregs) which are suppressive to the immune response.
  
  You want to remove that checkpoint (Tregs) so the immune response can flourish
  
  I hope this helps
  
  Best regards,
  
  Jimmy B
  - March 29, 2011 at 4:46 am
    
    Quote
    gabsound
    Participant
    
    Jimmy thanks for the info. A couple of questions for you. What do you mean by tumor burden? I had a WLE and 1 positive node. My Onc is concerned because my tumor was ulcerated. What did you mean by another trial? Do you mean not interferon or IPI?
    
    Thanks, Julie
  - March 29, 2011 at 4:46 am
    
    Quote
    gabsound
    Participant
    
    Jimmy thanks for the info. A couple of questions for you. What do you mean by tumor burden? I had a WLE and 1 positive node. My Onc is concerned because my tumor was ulcerated. What did you mean by another trial? Do you mean not interferon or IPI?
    
    Thanks, Julie
- - March 28, 2011 at 12:23 pm
  - Quote
  jim Breitfeller
  Participant
  Julie,
  
  I did interferon, but the cancer was intransit and I relapsed. If your tumor burden is very, very low, I would opt for IFN (Interferon) instead of a wait and see approach. If your Tumor burden is high, I would try another trial.
  
  There is a paper published 2005 called, "Newfound roadblock to interferon effectiveness against malignant melanoma".
  
  Researchers have uncovered a significant contributing factor to interferon resistance of malignant melanoma cells. The finding represents a step forward in understanding the molecular events that govern the growth of this type of cancer and the changes in gene expression and cellular signaling that underlie resistance to established therapies.
  
  Malignant melanoma is the deadliest form of skin cancer, and if not treated successfully, it can spread to affect the liver, lungs, or brain. Chemotherapy fights the disease with limited efficiency, and the use of interferon has become the most established immunotherapy for advanced-stage melanoma. However, melanoma tumors often develop a resistance to the drug, posing one of the major obstacles in the clinical treatment of this cancer.
  
  Now Professor Manfred Schartl and Dr. Claudia Wellbrock, scientists at the Universityof Werzburg, believe they have an explanation for how this interferon resistance is acquired. They have found that when a gene called STAT5 is too active in melanoma cells, it can counteract the anti-cancer effect of interferon. Interferon normally impedes the growth of cancer cells, whereas STAT5 is thought to act to promote cellular growth.
  
  The new work, published by Professor Schartl and his colleagues in Current Biology, shows that interferon actually activates STAT5 in melanoma cells but that under normal conditions, this does not interfere with the inhibitory potential of the drug. However, when cancer cells posses too much STAT5 activity to begin with, the further activation of STAT5 function by interferon induces a mechanism that blocks the ability of the drug to effectively inhibit growth.
  
  Confirming this initial finding, the researchers found that when they inhibited STAT5 in interferon-resistant melanoma cells, they were able to restore the effectiveness of interferon. This demonstrates the relevance of STAT5 and its contribution to the behavior of melanoma cells in the late stage of the disease.
  
  The findings explain the frequent failure of interferon therapies and thus further our understanding of melanoma in its late, and most aggressive, stage. In the future, a routine analysis of the STAT5 status in melanoma patients might help to improve and personalize therapies."
  
  Bottom Line is,
  
  if you have high tumor burden with stat5 activity, IFN increases that activity and helps differentiate the T-cells toward T regularatory cells (Tregs) which are suppressive to the immune response.
  
  You want to remove that checkpoint (Tregs) so the immune response can flourish
  
  I hope this helps
  
  Best regards,
  
  Jimmy B
- - March 28, 2011 at 12:42 pm
  - Quote
  KatyWI
  Participant
  HI Julie,
  
  Remembering that side effects are completely individual and variable…
  
  I did Interferon after my stage IIIa diagnosis. I then went seven years from the completion of IFN until I learned I had progressed to stage IV. Those were seven really good years and totally worth the challenges of interferon.
  
  I just finished Ipi on the expanded access protocol. It was a lot easier than interferon; I hardly had any side effects at all. I am not sure whether I actually had any effect, however, since a) I just finished and b) I chose to have resection after I finished the Ipi.
  
  The only other thing I have heard of, besides interferon and the Ipi stage III trial, is GM-CSF. Some doctors still use it and believe in it, although the randomized clinical trial testing GM-CSF for stage III was not favorable. My personal opinion is that you have been offered your two best choices – try the Ipi trial or start interferon.
  
  Good luck – whatever you decide we're all here to help you through.
  
  KatyWI
  - March 28, 2011 at 1:07 pm
    
    Quote
    Vermont_Donna
    Participant
    
    Hi Julie,
    
    I am stage 3a and I have done Interferon (made it through two doses of the high dose then got an infected PICC line (called a mechanical phlebitis), and then my oncologist had that pulled and after a few weeks of healing, I did the 11 months of low dose injections. I had a rough time in that I was extremely fatigued. I slept 12 hours at night and took 3 to 4 hour naps during the day. I took a leave of absence from work, but I was a single mom of a teen so I still "ran the house". I didnt eat as well, and had a hard time concentrating ie reading was hard, and I am not a big tv person but that was hard to concentrate on too…….I had a reoccurence 11 months later, but I have NO regrets about choosing to do the interferon.
    
    I then did radiation to my leg after resection and then 7 months of leukine. I did not have nearly as much fatigue and I worked the whole time after completing the radiation. I did have some injection site issues, as many do, but they were manageable with ice, tylenol and benedryl, and doing the injections at bedtime, like the interferon.
    
    I did have a reoccurence after 7 months too, and had some other treatments (ILP, radiation, resection, etc) but then I was offered Ipi in a trial with no arm in December 2010…..I have completed 4 infusions of Ipi, and all my melanoma has gone from my leg, and I do not have it anywhere else as far as we can tell. I have some fatigue and nausea with this, and again I left my employment to stay home and take care of myself better…ie not get so run down while working. I wanted to be able to sleep more, have much less stress, and eat better.
    
    Good luck in your decision making. Focus on the fact that you feel like you DO want to do something, your options are limited, and dont agonize over the statistics, of any of it! None of us are numbers. For me any drug that gave me a longer time before any reoccurence was worth doing (interferon) over "watch and wait". Ipi was not an option then and Leukine was not recommended by my oncologist as first line treatment.
    
    Vermont_Donna, stage 3a
    
    stable after 4 infusions of Ipi
  - March 28, 2011 at 1:07 pm
    
    Quote
    Vermont_Donna
    Participant
    
    Hi Julie,
    
    I am stage 3a and I have done Interferon (made it through two doses of the high dose then got an infected PICC line (called a mechanical phlebitis), and then my oncologist had that pulled and after a few weeks of healing, I did the 11 months of low dose injections. I had a rough time in that I was extremely fatigued. I slept 12 hours at night and took 3 to 4 hour naps during the day. I took a leave of absence from work, but I was a single mom of a teen so I still "ran the house". I didnt eat as well, and had a hard time concentrating ie reading was hard, and I am not a big tv person but that was hard to concentrate on too…….I had a reoccurence 11 months later, but I have NO regrets about choosing to do the interferon.
    
    I then did radiation to my leg after resection and then 7 months of leukine. I did not have nearly as much fatigue and I worked the whole time after completing the radiation. I did have some injection site issues, as many do, but they were manageable with ice, tylenol and benedryl, and doing the injections at bedtime, like the interferon.
    
    I did have a reoccurence after 7 months too, and had some other treatments (ILP, radiation, resection, etc) but then I was offered Ipi in a trial with no arm in December 2010…..I have completed 4 infusions of Ipi, and all my melanoma has gone from my leg, and I do not have it anywhere else as far as we can tell. I have some fatigue and nausea with this, and again I left my employment to stay home and take care of myself better…ie not get so run down while working. I wanted to be able to sleep more, have much less stress, and eat better.
    
    Good luck in your decision making. Focus on the fact that you feel like you DO want to do something, your options are limited, and dont agonize over the statistics, of any of it! None of us are numbers. For me any drug that gave me a longer time before any reoccurence was worth doing (interferon) over "watch and wait". Ipi was not an option then and Leukine was not recommended by my oncologist as first line treatment.
    
    Vermont_Donna, stage 3a
    
    stable after 4 infusions of Ipi
  - March 28, 2011 at 4:00 pm
    
    Quote
    EmilyandMike
    Participant
    
    Hi Julie
    
    If you are Stage 3b or 3C there are more options for clinical trials than if you are 3a (like the MAGE3 Derma trial, Ipi vs interferon, ipi vs placebo adjuvant trial). I am not sure what stage you are.
    
    There are even more options for people with Stage 3 and recurrences or unresectable mets – like ipi alone, Oncovex, Ipi and Avastin, etc…but that isnt the case for you. Those that are Stage 3a NED after surgery have the fewest options – interferon vs ipi is the only one I know of.
    
    The immune system is very complex and I still dont think the researchers understand excactly how it works. So with any drug that messes with it, there is definately going to be some risks involved. A recent study on Mice just revealed that another type of interferon (gamma) actaully PROMOTES skin cancer . I dont have full confidence in any of these drugs but I would sure chose Ipi over interferon if we could get it.
    
    Thanks
    
    Emily
    Wife of Mike, Stage 3a NED 19 mos with observation alone. http://www.emandmichael.com
  - March 28, 2011 at 4:00 pm
    
    Quote
    EmilyandMike
    Participant
    
    Hi Julie
    
    If you are Stage 3b or 3C there are more options for clinical trials than if you are 3a (like the MAGE3 Derma trial, Ipi vs interferon, ipi vs placebo adjuvant trial). I am not sure what stage you are.
    
    There are even more options for people with Stage 3 and recurrences or unresectable mets – like ipi alone, Oncovex, Ipi and Avastin, etc…but that isnt the case for you. Those that are Stage 3a NED after surgery have the fewest options – interferon vs ipi is the only one I know of.
    
    The immune system is very complex and I still dont think the researchers understand excactly how it works. So with any drug that messes with it, there is definately going to be some risks involved. A recent study on Mice just revealed that another type of interferon (gamma) actaully PROMOTES skin cancer . I dont have full confidence in any of these drugs but I would sure chose Ipi over interferon if we could get it.
    
    Thanks
    
    Emily
    Wife of Mike, Stage 3a NED 19 mos with observation alone. http://www.emandmichael.com
  - March 29, 2011 at 5:28 am
    
    Quote
    gabsound
    Participant
    
    Thank you Emily. I’m pretty sure I’m stage 3b.
    I appreciate you taking the time to share this information. It’s a tough choice. I’m trying to gather information and will make my decision pretty soon. It helps to hear differing opinions.
    
    Julie
  - March 29, 2011 at 5:28 am
    
    Quote
    gabsound
    Participant
    
    Thank you Emily. I’m pretty sure I’m stage 3b.
    I appreciate you taking the time to share this information. It’s a tough choice. I’m trying to gather information and will make my decision pretty soon. It helps to hear differing opinions.
    
    Julie
  - March 29, 2011 at 5:15 am
    
    Quote
    gabsound
    Participant
    
    Hi Donna, you are a celebrity! My sister e mailed me the article Friday that you were interviewed for. I knew right away who you were in the article from your posts here!!
    
    Sorry you have been thru so much, but thanks for sharing. So, no obvious problem from the IPI? You’re just recovering from your most recent surgery? That Pt info sheet for IPI is scary! Although my sister says if I read one for aspirin I wouldn’t take an aspirin either. I guess I have to have faith
  - March 29, 2011 at 5:21 am
    
    Quote
    gabsound
    Participant
    
    That my Dr has experience w both these drugs.
    
    I’m happy to hear of your great response to IPI!
    
    Julie
  - March 29, 2011 at 5:21 am
    
    Quote
    gabsound
    Participant
    
    That my Dr has experience w both these drugs.
    
    I’m happy to hear of your great response to IPI!
    
    Julie
  - March 29, 2011 at 1:31 pm
    
    Quote
    Vermont_Donna
    Participant
    
    Hi,
    
    I have had fewer problems with the Ipi…..less fatigue than with Interferon, but fatigue none the less. The nausea would come on several times a week, but when it hit, I couldnt move. I would take my meds and lay down or just sit. I would take compazine and if that didnt work after 90 minutes I would take Zofran. My oncologist said I was the only patient in the trial (15 were doing it at the same time as me) to complain about nausea. My stomach is my "weak" point anyways, its weird, but since I have been diagnosed with melanoma, I feel nauseaous more than before the diagnosis. I think thats where I manifest my anxiety!
    
    No, I have not had recent surgery…..I had two wider excisions…..6/1/10 and 10/4/10 and those two excisions, both on my lower calf, two inches away from each other, have not healed yet. They were stitched and one had the stitches out at 2 weeks then popped open gradually, so the next excision my surgeon had me leave the stitches in 3 weeks and then that one still gradually popped open to (dehiscence is the word for it). I have had numerous numerous doctor appts for these wounds….my surgeon, and a wound specialist. I have tried a wound vac for a week…..but my wounds have too much exudate daily from them for the wound vac to be effective. Without a bandage lymph fluid runs down my leg. They are slowly healing. I have had numerous cellulitis infections. I use an enzymatic wound debrider gel, on gauze, pack the wounds, and cover with more gauze and put a mesh bandage that slips on my leg like a footless sock, and it holds the bandages in place. (I am allergic to all bandages pretty much, so this works the best). I have been on narcotic pain meds since last July as they are so painful. I am telling you all this only to describe why I am no longer a surgical candidate for any resection in my lower leg. This is the biggest reason why I didnt opt for above the knee amputation which was what we were discussing last fall before Ipi. I was afraid of having a stump that wouldnt heal, among other issues.
    
    I read through and signed the 15 double sided consent form for the clinical trial I am on for Ipi, so got a chance to read all the possible side effects and also discussed each of the possible side effects with my oncologist before I was ever allowed to participate. You are right, reading other drugs side effects are often very scary too.
    
    Yes, I am thrilled to have been mentioned briefly in the NY Times interview. The reporter was great, didnt want to just ask me a few questions, he wanted to know my whole story. He emailed me the article on Friday like I asked him to and he asked me some questions regarding price and what did I think of that, and gave me his phone number and asked me to call him right away or email him. I chose to formulate my answer in an email to him. I am hoping he chooses to do a followup on me like in a year. Or maybe I'll just get in touch with him!!! You know I answered a survey that MRF (this site) put out about my experience with Ipi, and not very many people responded. So I was lucky to be picked out of the ones that did.
    
    Good luck!!!!
    
    Vermont_Donna
  - March 29, 2011 at 1:31 pm
    
    Quote
    Vermont_Donna
    Participant
    
    Hi,
    
    I have had fewer problems with the Ipi…..less fatigue than with Interferon, but fatigue none the less. The nausea would come on several times a week, but when it hit, I couldnt move. I would take my meds and lay down or just sit. I would take compazine and if that didnt work after 90 minutes I would take Zofran. My oncologist said I was the only patient in the trial (15 were doing it at the same time as me) to complain about nausea. My stomach is my "weak" point anyways, its weird, but since I have been diagnosed with melanoma, I feel nauseaous more than before the diagnosis. I think thats where I manifest my anxiety!
    
    No, I have not had recent surgery…..I had two wider excisions…..6/1/10 and 10/4/10 and those two excisions, both on my lower calf, two inches away from each other, have not healed yet. They were stitched and one had the stitches out at 2 weeks then popped open gradually, so the next excision my surgeon had me leave the stitches in 3 weeks and then that one still gradually popped open to (dehiscence is the word for it). I have had numerous numerous doctor appts for these wounds….my surgeon, and a wound specialist. I have tried a wound vac for a week…..but my wounds have too much exudate daily from them for the wound vac to be effective. Without a bandage lymph fluid runs down my leg. They are slowly healing. I have had numerous cellulitis infections. I use an enzymatic wound debrider gel, on gauze, pack the wounds, and cover with more gauze and put a mesh bandage that slips on my leg like a footless sock, and it holds the bandages in place. (I am allergic to all bandages pretty much, so this works the best). I have been on narcotic pain meds since last July as they are so painful. I am telling you all this only to describe why I am no longer a surgical candidate for any resection in my lower leg. This is the biggest reason why I didnt opt for above the knee amputation which was what we were discussing last fall before Ipi. I was afraid of having a stump that wouldnt heal, among other issues.
    
    I read through and signed the 15 double sided consent form for the clinical trial I am on for Ipi, so got a chance to read all the possible side effects and also discussed each of the possible side effects with my oncologist before I was ever allowed to participate. You are right, reading other drugs side effects are often very scary too.
    
    Yes, I am thrilled to have been mentioned briefly in the NY Times interview. The reporter was great, didnt want to just ask me a few questions, he wanted to know my whole story. He emailed me the article on Friday like I asked him to and he asked me some questions regarding price and what did I think of that, and gave me his phone number and asked me to call him right away or email him. I chose to formulate my answer in an email to him. I am hoping he chooses to do a followup on me like in a year. Or maybe I'll just get in touch with him!!! You know I answered a survey that MRF (this site) put out about my experience with Ipi, and not very many people responded. So I was lucky to be picked out of the ones that did.
    
    Good luck!!!!
    
    Vermont_Donna
  - March 29, 2011 at 5:15 am
    
    Quote
    gabsound
    Participant
    
    Hi Donna, you are a celebrity! My sister e mailed me the article Friday that you were interviewed for. I knew right away who you were in the article from your posts here!!
    
    Sorry you have been thru so much, but thanks for sharing. So, no obvious problem from the IPI? You’re just recovering from your most recent surgery? That Pt info sheet for IPI is scary! Although my sister says if I read one for aspirin I wouldn’t take an aspirin either. I guess I have to have faith
  - March 29, 2011 at 4:49 am
    
    Quote
    gabsound
    Participant
    
    Thank you Katy. I will read a bit more.
  - March 29, 2011 at 4:49 am
    
    Quote
    gabsound
    Participant
    
    Thank you Katy. I will read a bit more.
- - March 28, 2011 at 12:42 pm
  - Quote
  KatyWI
  Participant
  HI Julie,
  
  Remembering that side effects are completely individual and variable…
  
  I did Interferon after my stage IIIa diagnosis. I then went seven years from the completion of IFN until I learned I had progressed to stage IV. Those were seven really good years and totally worth the challenges of interferon.
  
  I just finished Ipi on the expanded access protocol. It was a lot easier than interferon; I hardly had any side effects at all. I am not sure whether I actually had any effect, however, since a) I just finished and b) I chose to have resection after I finished the Ipi.
  
  The only other thing I have heard of, besides interferon and the Ipi stage III trial, is GM-CSF. Some doctors still use it and believe in it, although the randomized clinical trial testing GM-CSF for stage III was not favorable. My personal opinion is that you have been offered your two best choices – try the Ipi trial or start interferon.
  
  Good luck – whatever you decide we're all here to help you through.
  
  KatyWI
- - March 28, 2011 at 10:01 pm
  - Quote
  CKasper
  Participant
  I'm being treated at a Melanoma Treatment Facility in New England. In 2006 I went through the high dose interferon therapy. Its wasn't a shot. It was an IV bag filled with Interferon given to me daily for 5 days then the weekend off.
  
  My experience was life threatening and the complications afterward are horrible.
  
  I cannot do Interferon, Interlukin or another of the immunotherapies. So I just stopped looking into them, but what I did find out is that in our facility up here they supposedly no longer do the High Dose interferon Therapy.
  
  Read all you can about this drug before you decide. For your peace of mind.
  
  C.
  - March 29, 2011 at 4:54 am
    
    Quote
    gabsound
    Participant
    
    C, yours is the 1st post I’ve seen about serious effects from the interferon. I’m pretty new here though. Got my news Feb 2 of this year. Could you elaborate? You could e mail directly if you prefer.
    
    Thanks for your input.
    
    Julie
  - March 29, 2011 at 4:54 am
    
    Quote
    gabsound
    Participant
    
    C, yours is the 1st post I’ve seen about serious effects from the interferon. I’m pretty new here though. Got my news Feb 2 of this year. Could you elaborate? You could e mail directly if you prefer.
    
    Thanks for your input.
    
    Julie
- - March 28, 2011 at 10:01 pm
  - Quote
  CKasper
  Participant
  I'm being treated at a Melanoma Treatment Facility in New England. In 2006 I went through the high dose interferon therapy. Its wasn't a shot. It was an IV bag filled with Interferon given to me daily for 5 days then the weekend off.
  
  My experience was life threatening and the complications afterward are horrible.
  
  I cannot do Interferon, Interlukin or another of the immunotherapies. So I just stopped looking into them, but what I did find out is that in our facility up here they supposedly no longer do the High Dose interferon Therapy.
  
  Read all you can about this drug before you decide. For your peace of mind.
  
  C.
- - March 29, 2011 at 12:33 am
  - Quote
  theonlydrea
  Participant
  though i have never met him, i do know Dr samlowski use to be at huntsman in utah, i have heard really great things about him and a friend of our now travels from utah to las vegas to see him and after 3 years stage iv her tumors have all shrank (ipi). my husband and i have discussed traveling out to see him for a second opinion several times.
  
  that being said my husband did il2 (didn't work) and is now starting the braf inhibitor food/particle (random on which study food or particle). he was suppose to start today but couldnt due to having to wait from just finishing radiation.
  
  we didnt do the braf study first becuase of our fears if the first study being double random meaning it could of been interferon or braf or none. now that he is stage four and nothing has been able to slow it down they asure us he will be getting the braf drug. I have heard great news about the braf saying it has an 80 percent response rate where his il2 only had a 10-15 percent response rate.
  
  best wishes to you and i know how you hear about all these drugs and feel like your spinning because really dont know what to do and scared of what if's
  - March 29, 2011 at 12:40 am
    
    Quote
    theonlydrea
    Participant
    
    p.s
    
    definetly dont wait and see.. we did that and it was the biggest mistage we have made so far. i wish we had been more aggressive but they assured us they had it all and would take scans ever 4 months.. 3 months later it was back… the size of a fist and now in a non operative and closing off his artery and bronchial tube) please dont wait to decided is my advise
  - March 29, 2011 at 5:03 am
    
    Quote
    gabsound
    Participant
    
    dreah,
    
    Thanks for your response. I hope your husband gets started soon and that 80 percent response rate sounds Wonderful. I hope he will be getting some relief quickly. I will be asking Dr Samlowski a few more questions. I’m still not sure how thus clinical trial business works. Does the dr only talk about the ones he’s affiliated with? I like Dr Samlowski.
  - March 29, 2011 at 3:11 pm
    
    Quote
    theonlydrea
    Participant
    
    My husbands doctor mostly talks about trials he is associated with (dr grossman @ huntsman) that being said he has told my husband if needed he would send him to the city of hope hospital in ca (that tells me he is about the patient and now just his work and I like knowing ).
    
    As for Dr. samlowski I can ask my friend. I just know she loves him to pieces
  - March 29, 2011 at 3:11 pm
    
    Quote
    theonlydrea
    Participant
    
    My husbands doctor mostly talks about trials he is associated with (dr grossman @ huntsman) that being said he has told my husband if needed he would send him to the city of hope hospital in ca (that tells me he is about the patient and now just his work and I like knowing ).
    
    As for Dr. samlowski I can ask my friend. I just know she loves him to pieces
  - March 29, 2011 at 5:03 am
    
    Quote
    gabsound
    Participant
    
    dreah,
    
    Thanks for your response. I hope your husband gets started soon and that 80 percent response rate sounds Wonderful. I hope he will be getting some relief quickly. I will be asking Dr Samlowski a few more questions. I’m still not sure how thus clinical trial business works. Does the dr only talk about the ones he’s affiliated with? I like Dr Samlowski.
  - March 29, 2011 at 12:40 am
    
    Quote
    theonlydrea
    Participant
    
    p.s
    
    definetly dont wait and see.. we did that and it was the biggest mistage we have made so far. i wish we had been more aggressive but they assured us they had it all and would take scans ever 4 months.. 3 months later it was back… the size of a fist and now in a non operative and closing off his artery and bronchial tube) please dont wait to decided is my advise
- - March 29, 2011 at 12:33 am
  - Quote
  theonlydrea
  Participant
  though i have never met him, i do know Dr samlowski use to be at huntsman in utah, i have heard really great things about him and a friend of our now travels from utah to las vegas to see him and after 3 years stage iv her tumors have all shrank (ipi). my husband and i have discussed traveling out to see him for a second opinion several times.
  
  that being said my husband did il2 (didn't work) and is now starting the braf inhibitor food/particle (random on which study food or particle). he was suppose to start today but couldnt due to having to wait from just finishing radiation.
  
  we didnt do the braf study first becuase of our fears if the first study being double random meaning it could of been interferon or braf or none. now that he is stage four and nothing has been able to slow it down they asure us he will be getting the braf drug. I have heard great news about the braf saying it has an 80 percent response rate where his il2 only had a 10-15 percent response rate.
  
  best wishes to you and i know how you hear about all these drugs and feel like your spinning because really dont know what to do and scared of what if's