Scan shows progression, need advice.

Maria,

Sorry your scans haven't been what you were hoping for.  I had one of those recently as well.  Not sure how your trial is structured for the ipi/nivo arm but in my trial I had 6 nivo infusion followed by good scans, then 3 ipi infusions followed by scans which showed progression.  I'm back on the nivo now and hoping it starts working again.  Is it possible you started with ipi infusions?  If that's the case then it would not be out of the norm to have progression at the first scans.

I've been thinking about my plan A, B, C, and D a lot lately as well.  TIL is definitely one of those.  I think you should also consider IL-2 as an option.  I know it's a tough treatment and hasn't had the best reponse rates in the past but I think it's  worth considering while Dave is still strong.  Jerry has posted a couple things lately about IL-2 and vaccine combos and Il-2 and temozolomide (TMZ) combo which have shown some pretty impressive results.  I think another option is the ADC trial they are doing at Sarah Canon in Nashville (I think it is also at the Angeles Clinic and a site in Michigan). You've probably seen this but if not you can read it it here:  http://forum.melanomainternational.org/mif/viewtopic.php?f=54&t=34242

It's not hard to pick the top 3 or 4 options, the hard part is the order.  Of course you need to be careful that one choice you make isn't going to disqualify you for a more promising option.  If my trial doesn't work out I'm really thinking about a IL-2 trial.  My thinking is the Ipi and Nivo inhibitors still having some influence on my immune system may have a positive impact on the IL-2's effectiveness.  I think after that I would try TIL.

I just got a newletter from Moffitt recently and in it they mentioned getting a grant to do more TIL research so that might be a good option if you decide to go with TIL.  Dr. Weber is overseeing that program and he studied under Dr. Rosenberg at NCI for something like 12 years.

Good luck Maria.  Hopefully we can bounce ideas off one another more.  I'm not Braf positive so I'm not very knowledgeable on those options.

Brian

Maria,

Sorry your scans haven't been what you were hoping for.  I had one of those recently as well.  Not sure how your trial is structured for the ipi/nivo arm but in my trial I had 6 nivo infusion followed by good scans, then 3 ipi infusions followed by scans which showed progression.  I'm back on the nivo now and hoping it starts working again.  Is it possible you started with ipi infusions?  If that's the case then it would not be out of the norm to have progression at the first scans.

I've been thinking about my plan A, B, C, and D a lot lately as well.  TIL is definitely one of those.  I think you should also consider IL-2 as an option.  I know it's a tough treatment and hasn't had the best reponse rates in the past but I think it's  worth considering while Dave is still strong.  Jerry has posted a couple things lately about IL-2 and vaccine combos and Il-2 and temozolomide (TMZ) combo which have shown some pretty impressive results.  I think another option is the ADC trial they are doing at Sarah Canon in Nashville (I think it is also at the Angeles Clinic and a site in Michigan). You've probably seen this but if not you can read it it here:  http://forum.melanomainternational.org/mif/viewtopic.php?f=54&t=34242

It's not hard to pick the top 3 or 4 options, the hard part is the order.  Of course you need to be careful that one choice you make isn't going to disqualify you for a more promising option.  If my trial doesn't work out I'm really thinking about a IL-2 trial.  My thinking is the Ipi and Nivo inhibitors still having some influence on my immune system may have a positive impact on the IL-2's effectiveness.  I think after that I would try TIL.

I just got a newletter from Moffitt recently and in it they mentioned getting a grant to do more TIL research so that might be a good option if you decide to go with TIL.  Dr. Weber is overseeing that program and he studied under Dr. Rosenberg at NCI for something like 12 years.

Good luck Maria.  Hopefully we can bounce ideas off one another more.  I'm not Braf positive so I'm not very knowledgeable on those options.

Brian

Maria,

Sorry your scans haven't been what you were hoping for.  I had one of those recently as well.  Not sure how your trial is structured for the ipi/nivo arm but in my trial I had 6 nivo infusion followed by good scans, then 3 ipi infusions followed by scans which showed progression.  I'm back on the nivo now and hoping it starts working again.  Is it possible you started with ipi infusions?  If that's the case then it would not be out of the norm to have progression at the first scans.

I've been thinking about my plan A, B, C, and D a lot lately as well.  TIL is definitely one of those.  I think you should also consider IL-2 as an option.  I know it's a tough treatment and hasn't had the best reponse rates in the past but I think it's  worth considering while Dave is still strong.  Jerry has posted a couple things lately about IL-2 and vaccine combos and Il-2 and temozolomide (TMZ) combo which have shown some pretty impressive results.  I think another option is the ADC trial they are doing at Sarah Canon in Nashville (I think it is also at the Angeles Clinic and a site in Michigan). You've probably seen this but if not you can read it it here:  http://forum.melanomainternational.org/mif/viewtopic.php?f=54&t=34242

It's not hard to pick the top 3 or 4 options, the hard part is the order.  Of course you need to be careful that one choice you make isn't going to disqualify you for a more promising option.  If my trial doesn't work out I'm really thinking about a IL-2 trial.  My thinking is the Ipi and Nivo inhibitors still having some influence on my immune system may have a positive impact on the IL-2's effectiveness.  I think after that I would try TIL.

I just got a newletter from Moffitt recently and in it they mentioned getting a grant to do more TIL research so that might be a good option if you decide to go with TIL.  Dr. Weber is overseeing that program and he studied under Dr. Rosenberg at NCI for something like 12 years.

Good luck Maria.  Hopefully we can bounce ideas off one another more.  I'm not Braf positive so I'm not very knowledgeable on those options.

Brian

Hi, Maria-

I think that Brian has given you some very good advice. Although this first set of scans is not as good as you were hoping for, it does appear that Dave is having at least a partial response– think about what these scans would be likely to show if Dave had had no treatment at all these last 3 months. So whatever he is getting is doing something. That's good!

It's also early days yet. Both ipi and nivo take some time to work, so it's quite possible that the next set of scans 6 weeks from now will be better. Hang in there.

That being said, you are wise to think about and plan for what comes next. Brian is right, there have been some reports that getting IL-2 after ipi or after nivo can improve the response rates. I think there is a clinical trial studying that right now. So as long as Dave is strong and healthy, following up with IL-2 might be a good option.

If you are seriously considering the TIL option, you could use the next 6 weeks to find out if Dave gets IL-2 will that disqualify him from future TIL. I heard that Moffitt just got a new grant to try TIL again so you could call both NIH and Moffitt and find out the details of their inclusion/exclusion criteria.

And lastly, the new antibody-drug conjugate (ADC) approach is promising. Not much has been published about that yet, but it is certainly worth looking in to. Personally, I would hold off on the Tafinlar + Mekinist combo for now. It has already been FDA approved so Dave can get that at any time. Since Dave does seem to be having at least a partial response to whichever checkpoint inhibitor he is getting, I would recommend trying to leverage that success before switching to a BRAF inhibitor. But then again, maybe a 1-2 punch with a completely different approach would be exactly the right thing. That is something you could discuss with your oncologist. 

Hi, Maria-

I think that Brian has given you some very good advice. Although this first set of scans is not as good as you were hoping for, it does appear that Dave is having at least a partial response– think about what these scans would be likely to show if Dave had had no treatment at all these last 3 months. So whatever he is getting is doing something. That's good!

It's also early days yet. Both ipi and nivo take some time to work, so it's quite possible that the next set of scans 6 weeks from now will be better. Hang in there.

That being said, you are wise to think about and plan for what comes next. Brian is right, there have been some reports that getting IL-2 after ipi or after nivo can improve the response rates. I think there is a clinical trial studying that right now. So as long as Dave is strong and healthy, following up with IL-2 might be a good option.

If you are seriously considering the TIL option, you could use the next 6 weeks to find out if Dave gets IL-2 will that disqualify him from future TIL. I heard that Moffitt just got a new grant to try TIL again so you could call both NIH and Moffitt and find out the details of their inclusion/exclusion criteria.

And lastly, the new antibody-drug conjugate (ADC) approach is promising. Not much has been published about that yet, but it is certainly worth looking in to. Personally, I would hold off on the Tafinlar + Mekinist combo for now. It has already been FDA approved so Dave can get that at any time. Since Dave does seem to be having at least a partial response to whichever checkpoint inhibitor he is getting, I would recommend trying to leverage that success before switching to a BRAF inhibitor. But then again, maybe a 1-2 punch with a completely different approach would be exactly the right thing. That is something you could discuss with your oncologist. 

Hi, Maria-

I think that Brian has given you some very good advice. Although this first set of scans is not as good as you were hoping for, it does appear that Dave is having at least a partial response– think about what these scans would be likely to show if Dave had had no treatment at all these last 3 months. So whatever he is getting is doing something. That's good!

It's also early days yet. Both ipi and nivo take some time to work, so it's quite possible that the next set of scans 6 weeks from now will be better. Hang in there.

That being said, you are wise to think about and plan for what comes next. Brian is right, there have been some reports that getting IL-2 after ipi or after nivo can improve the response rates. I think there is a clinical trial studying that right now. So as long as Dave is strong and healthy, following up with IL-2 might be a good option.

If you are seriously considering the TIL option, you could use the next 6 weeks to find out if Dave gets IL-2 will that disqualify him from future TIL. I heard that Moffitt just got a new grant to try TIL again so you could call both NIH and Moffitt and find out the details of their inclusion/exclusion criteria.

And lastly, the new antibody-drug conjugate (ADC) approach is promising. Not much has been published about that yet, but it is certainly worth looking in to. Personally, I would hold off on the Tafinlar + Mekinist combo for now. It has already been FDA approved so Dave can get that at any time. Since Dave does seem to be having at least a partial response to whichever checkpoint inhibitor he is getting, I would recommend trying to leverage that success before switching to a BRAF inhibitor. But then again, maybe a 1-2 punch with a completely different approach would be exactly the right thing. That is something you could discuss with your oncologist. 

I just became stage IV myself and I plan to be here for a long time. I just have too much more left to do :).

So my simple message is do not give up hope.

Kevin

I just became stage IV myself and I plan to be here for a long time. I just have too much more left to do :).

So my simple message is do not give up hope.

Kevin

I just became stage IV myself and I plan to be here for a long time. I just have too much more left to do :).

So my simple message is do not give up hope.

Kevin

Hi Maria,

So sorry that you and Dave are going through all this just now.  However, I know that he has a fabulous weapon in his anti-melanoma arsenal….and that is you.  I have one of those myself and it is without a doubt…a partner like you in melanoma mess is worth more than gold!

I am also sorry that scans demonstrated only a mixed response.  However, since your doc thinks there may be more benefit down the road, I think that it is a very hopeful thing.  I finished a nivo, NED trial at Moffitt.  Here are some things I've learned that may be helpful for you.  No matter if Dave is getting ipi or anti-PD1 or both….these agents are known for two properties that has made response rates hard to calculate using traditional standards.  They work slowly AND sometimes, even when ultimately effective, show increased size of tumors and even growth of new tumors, despite eventually eradicating the tumors completely or decreasing them significantly.  According to Dr. Weber at Moffitt, there was a guy in my study that progressed early on and was kicked off the study.  In trying to find a different course of therapy for him, Weber rescanned him…and the tumors were then shrinking….time passed and he was rescanned…tumors still shrinking.  Last I heard, he was STILL stable with no further treatment, and because his time in the trial was stopped..this continued with very few doses of medication!  (I couldn't find all my references to that case from my blog…but two are: the entry from Sunday, March 4, 2012 and Sunday Sept 9 2012.)  Additionally, Weber has often talked about needing to change the evaluation process as well as "endpoint" measurements in immunotherapy studies for these very reasons.  Many studies have noted that tumors often appear larger on scans after initiation of immunotherapies because of the accumulation of t-cells around the tumor.  So…all in all….those factors do NOT make it unreasonable to hope that Dave's tumors are actually responding to the med given and will show decreased size on subsequent scans.  With all that….I would definitely stay the course and continue your current trial at this point.

1.  In my work and discussion with another couple on a very similar study…they talked to the doctor and found that should they fail the study, the patient would be "unblinded".  I consider this essential for making decisions about possible next treatments and feel it is most likely how your case would be handled as well, but would ask my doctor to confirm.  I would also ask about any possibility of "cross-over" should Dave need it.

2.  Weber has discussed many times (there are several reports on my blog) how many patients who do not respond to ipi….will subsequently respond to anti-PD1 and vice versa.  So, if Dave really doesn't respond to the med he is on now, He may respond to the other…later.  (I really don't understand why your husband…if he is getting only ipi now…not be allowed to take anti-PD1 later.  Apart from the difficulty of getting into a trial…since so few remain open with the single agent.  But, many patients have been taking anti-PD1 after ipi, and it seems to me that there would remain that option albeit that it may not happen until anti-PD1 is approved.)

3.  If any of Dave's lesions are superficial enough….he may want to look at (LATER…IF needed) some studies starting up with Rose Bengal…PV-10.  It is showing some pretty good results.  You inject one or so tumors with the med and they, as well as internal tumors, GO AWAY!  Pretty cool.  Too early to know too many numbers now though.  Have a recent blog post on all that.

4. I have also posted about the ADC (antibody drug conjugate) trial on my blog.  There are few openings, but a dear one of mine is in this trial and is having reduction in tumor burden, so I am very hopeful.  It is not stereotypical chemo, but rather chemo bound to a monoclonal antibody that is picked up only by the tumor cells….and like a Trojan Horse…BAM!!  Tumor cells in trouble…the rest of you…mostly…protected…from the bad drug and the bad tumor cells.

5.  Perhaps the link below will shed some light on the rationale for use of an immune therapy (IL2) along with a BRAF inhibitor (Vemurafenib).  http://clincancerres.aacrjournals.org/content/19/5/1225.abstract  The BRAF inhibitor increases the amount of melanoma antigen on the tumor cell and makes it a better target for the immune system.

6.  The MEK/BRAF combo's are now FDA approved as already mentioned.  TIL is certainly an option.  The anti-PDL1 BRAF/MEK trial is also something that seems to hold promise and may be a real possibility should you need it.

Lastly, there are many, many more trials ongoing.  I know it is a lot of work, but reviewing those options for Stage IV melanoma (as I'm sure you probably already have) might turn up something more.  Hang in there.  Yes, Brian knows me well.  Being a rattie is not easy!  It is hard and confusing, and a jump off a ledge into the unknown in even the best of cases.  Hang in there.  Talk to your docs.  Demand to know what they think.  Ask them, "What would you do next if he was your…wife, husband, etc.?"  I've used that a lot.  It gets more answers than you might get otherwise.

Wishing you my best.  Celeste

Hi Maria,

So sorry that you and Dave are going through all this just now.  However, I know that he has a fabulous weapon in his anti-melanoma arsenal….and that is you.  I have one of those myself and it is without a doubt…a partner like you in melanoma mess is worth more than gold!

I am also sorry that scans demonstrated only a mixed response.  However, since your doc thinks there may be more benefit down the road, I think that it is a very hopeful thing.  I finished a nivo, NED trial at Moffitt.  Here are some things I've learned that may be helpful for you.  No matter if Dave is getting ipi or anti-PD1 or both….these agents are known for two properties that has made response rates hard to calculate using traditional standards.  They work slowly AND sometimes, even when ultimately effective, show increased size of tumors and even growth of new tumors, despite eventually eradicating the tumors completely or decreasing them significantly.  According to Dr. Weber at Moffitt, there was a guy in my study that progressed early on and was kicked off the study.  In trying to find a different course of therapy for him, Weber rescanned him…and the tumors were then shrinking….time passed and he was rescanned…tumors still shrinking.  Last I heard, he was STILL stable with no further treatment, and because his time in the trial was stopped..this continued with very few doses of medication!  (I couldn't find all my references to that case from my blog…but two are: the entry from Sunday, March 4, 2012 and Sunday Sept 9 2012.)  Additionally, Weber has often talked about needing to change the evaluation process as well as "endpoint" measurements in immunotherapy studies for these very reasons.  Many studies have noted that tumors often appear larger on scans after initiation of immunotherapies because of the accumulation of t-cells around the tumor.  So…all in all….those factors do NOT make it unreasonable to hope that Dave's tumors are actually responding to the med given and will show decreased size on subsequent scans.  With all that….I would definitely stay the course and continue your current trial at this point.

1.  In my work and discussion with another couple on a very similar study…they talked to the doctor and found that should they fail the study, the patient would be "unblinded".  I consider this essential for making decisions about possible next treatments and feel it is most likely how your case would be handled as well, but would ask my doctor to confirm.  I would also ask about any possibility of "cross-over" should Dave need it.

2.  Weber has discussed many times (there are several reports on my blog) how many patients who do not respond to ipi….will subsequently respond to anti-PD1 and vice versa.  So, if Dave really doesn't respond to the med he is on now, He may respond to the other…later.  (I really don't understand why your husband…if he is getting only ipi now…not be allowed to take anti-PD1 later.  Apart from the difficulty of getting into a trial…since so few remain open with the single agent.  But, many patients have been taking anti-PD1 after ipi, and it seems to me that there would remain that option albeit that it may not happen until anti-PD1 is approved.)

3.  If any of Dave's lesions are superficial enough….he may want to look at (LATER…IF needed) some studies starting up with Rose Bengal…PV-10.  It is showing some pretty good results.  You inject one or so tumors with the med and they, as well as internal tumors, GO AWAY!  Pretty cool.  Too early to know too many numbers now though.  Have a recent blog post on all that.

4. I have also posted about the ADC (antibody drug conjugate) trial on my blog.  There are few openings, but a dear one of mine is in this trial and is having reduction in tumor burden, so I am very hopeful.  It is not stereotypical chemo, but rather chemo bound to a monoclonal antibody that is picked up only by the tumor cells….and like a Trojan Horse…BAM!!  Tumor cells in trouble…the rest of you…mostly…protected…from the bad drug and the bad tumor cells.

5.  Perhaps the link below will shed some light on the rationale for use of an immune therapy (IL2) along with a BRAF inhibitor (Vemurafenib).  http://clincancerres.aacrjournals.org/content/19/5/1225.abstract  The BRAF inhibitor increases the amount of melanoma antigen on the tumor cell and makes it a better target for the immune system.

6.  The MEK/BRAF combo's are now FDA approved as already mentioned.  TIL is certainly an option.  The anti-PDL1 BRAF/MEK trial is also something that seems to hold promise and may be a real possibility should you need it.

Lastly, there are many, many more trials ongoing.  I know it is a lot of work, but reviewing those options for Stage IV melanoma (as I'm sure you probably already have) might turn up something more.  Hang in there.  Yes, Brian knows me well.  Being a rattie is not easy!  It is hard and confusing, and a jump off a ledge into the unknown in even the best of cases.  Hang in there.  Talk to your docs.  Demand to know what they think.  Ask them, "What would you do next if he was your…wife, husband, etc.?"  I've used that a lot.  It gets more answers than you might get otherwise.

Wishing you my best.  Celeste

Hi Maria,

So sorry that you and Dave are going through all this just now.  However, I know that he has a fabulous weapon in his anti-melanoma arsenal….and that is you.  I have one of those myself and it is without a doubt…a partner like you in melanoma mess is worth more than gold!

I am also sorry that scans demonstrated only a mixed response.  However, since your doc thinks there may be more benefit down the road, I think that it is a very hopeful thing.  I finished a nivo, NED trial at Moffitt.  Here are some things I've learned that may be helpful for you.  No matter if Dave is getting ipi or anti-PD1 or both….these agents are known for two properties that has made response rates hard to calculate using traditional standards.  They work slowly AND sometimes, even when ultimately effective, show increased size of tumors and even growth of new tumors, despite eventually eradicating the tumors completely or decreasing them significantly.  According to Dr. Weber at Moffitt, there was a guy in my study that progressed early on and was kicked off the study.  In trying to find a different course of therapy for him, Weber rescanned him…and the tumors were then shrinking….time passed and he was rescanned…tumors still shrinking.  Last I heard, he was STILL stable with no further treatment, and because his time in the trial was stopped..this continued with very few doses of medication!  (I couldn't find all my references to that case from my blog…but two are: the entry from Sunday, March 4, 2012 and Sunday Sept 9 2012.)  Additionally, Weber has often talked about needing to change the evaluation process as well as "endpoint" measurements in immunotherapy studies for these very reasons.  Many studies have noted that tumors often appear larger on scans after initiation of immunotherapies because of the accumulation of t-cells around the tumor.  So…all in all….those factors do NOT make it unreasonable to hope that Dave's tumors are actually responding to the med given and will show decreased size on subsequent scans.  With all that….I would definitely stay the course and continue your current trial at this point.

1.  In my work and discussion with another couple on a very similar study…they talked to the doctor and found that should they fail the study, the patient would be "unblinded".  I consider this essential for making decisions about possible next treatments and feel it is most likely how your case would be handled as well, but would ask my doctor to confirm.  I would also ask about any possibility of "cross-over" should Dave need it.

2.  Weber has discussed many times (there are several reports on my blog) how many patients who do not respond to ipi….will subsequently respond to anti-PD1 and vice versa.  So, if Dave really doesn't respond to the med he is on now, He may respond to the other…later.  (I really don't understand why your husband…if he is getting only ipi now…not be allowed to take anti-PD1 later.  Apart from the difficulty of getting into a trial…since so few remain open with the single agent.  But, many patients have been taking anti-PD1 after ipi, and it seems to me that there would remain that option albeit that it may not happen until anti-PD1 is approved.)

3.  If any of Dave's lesions are superficial enough….he may want to look at (LATER…IF needed) some studies starting up with Rose Bengal…PV-10.  It is showing some pretty good results.  You inject one or so tumors with the med and they, as well as internal tumors, GO AWAY!  Pretty cool.  Too early to know too many numbers now though.  Have a recent blog post on all that.

4. I have also posted about the ADC (antibody drug conjugate) trial on my blog.  There are few openings, but a dear one of mine is in this trial and is having reduction in tumor burden, so I am very hopeful.  It is not stereotypical chemo, but rather chemo bound to a monoclonal antibody that is picked up only by the tumor cells….and like a Trojan Horse…BAM!!  Tumor cells in trouble…the rest of you…mostly…protected…from the bad drug and the bad tumor cells.

5.  Perhaps the link below will shed some light on the rationale for use of an immune therapy (IL2) along with a BRAF inhibitor (Vemurafenib).  http://clincancerres.aacrjournals.org/content/19/5/1225.abstract  The BRAF inhibitor increases the amount of melanoma antigen on the tumor cell and makes it a better target for the immune system.

6.  The MEK/BRAF combo's are now FDA approved as already mentioned.  TIL is certainly an option.  The anti-PDL1 BRAF/MEK trial is also something that seems to hold promise and may be a real possibility should you need it.

Lastly, there are many, many more trials ongoing.  I know it is a lot of work, but reviewing those options for Stage IV melanoma (as I'm sure you probably already have) might turn up something more.  Hang in there.  Yes, Brian knows me well.  Being a rattie is not easy!  It is hard and confusing, and a jump off a ledge into the unknown in even the best of cases.  Hang in there.  Talk to your docs.  Demand to know what they think.  Ask them, "What would you do next if he was your…wife, husband, etc.?"  I've used that a lot.  It gets more answers than you might get otherwise.

Wishing you my best.  Celeste

Maria, will provide more when I get back from town, but for now some general IL-2 info. 

The aim is to administer one bag every 8 hours for a maximum of 14 bags. Normally one is able to tolerate around 7 to 9 bags in the week. Normal protocol is 5 days for the first week of each of the standard three rounds, then a one or two week break. I recommend a 2 week break, before returning for the second week of each round. Scans are taken about a month after the second weeks IL-2 treatment. If less than 25% growth, they usually consider one to be responding enough to start the second round after about a two month period between week two and week one of the next round. My Oncologist takes patients into the hospital on Monday and usually discharges them on Saturday if the blood work/body functions are acceptable.

My Oncologist has worked with IL-2 since the early 1980;s and helped develop the standard protocols for when the FDA finally approved IL-2 for Melanoma in the late 1990's. You do want a Doctor and staff that are all experienced with administering IL-2. While the side effects can be rough (horrendous) if not caught as soon as they start, they can usually be controlled without one going through the extremes that could be experienced. I urge people not to try to “man it out” with the side effects. The timing for start of side effects is fairly consistent for a person. After the first few bags you should have it down and know when to expect what to happen.

As you read, I tried that once and instead of one shot, it took three and too much time to stop my bad shakes (the Rigors). I urge people to try to keep the fluids going regularly, not to have to try to catch-up after the urine flow and kidneys have started shutting down. Keeping some bananas on hand will help keep ones potassium levels up. The larger the heating pad that is available, the better. Have warm blankets available shortly after the bag is administered.

Don't be surprised if there are some hallucinations, this is not unusual. I didn't have any, but know several people that did.

If a man has a mustache I recommend shaving it before receiving the IL-2. The nasal discharge I had caused the skin of my upper lip to become raw and the mustache matted up with scabs. (First week only, knew better afterwards.) (Much rougher to cut when it is matted with scabs on raw flesh!)

If possible, someone should stay with the patient most of the time, especially for several hours after each bag of IL-2. At the first indication of either chills/coldness or nausea the nurses should be immediately notified and provide meds to counteract within a few minutes. (In less than 5 minutes)

Low blood pressure was one of most peoples main problems. On a few, the BP goes up. Learn what happens before taking any licorice. Black Licorice raises ones blood pressure (can get licorice tea) The tea is awful tasting, more palatable if mixed with another tea. The other colors of “licorice” actually contain no licorice, only the black contains actual licorice. They skip bags when the BP drops below 90.

Our wonderful Jane from Maine has helped many people and produced much information about IL-2 treatment at : http://melanomaresources.info/jane.html#homenotes

I do suggest being careful about the use of Atavan. On some people (me) it does not result in the desired effect. It aggravated my Mother rather than calming her. I could not function properly after taking it myself. Most people have no problem with it. It is often used in hospitals and nursing homes to “calm” older people so that they aren't “problems”.

My Oncologist said I could take most of my supplements during treatment but to cut out things that act as blood thinners.  They will give one many shots of blood thinners during the week of each Il-2 hospitalization. 

Make sure you receive Lasix (FUROSEMIDE) water pills, or another type of diuretic before you leave the hospital. This is necessary to eliminate the excess fluid that develops in ones body from the capillary leak caused by the Il-2.

Don't be surprised when after a couple of days food loses it's taste to one. The taste resumes a few days after finishing the week of IL-2.

Try to eat 2 bananas a day so your potassium levels don’t get depleted.  When mouth starts feeling sore (it's usually thrush) Magic mouthwash/lidocaine viscose

Have they said if they will be using a Bard port or a Pic line?

My story/journal is at :  http://www.carepages.com/carepages/JerryEllis

**************************************************************************************************************
I see that Janner has redone her site.  Janner, while a multiple primary person is still a stage I person, Her father is stage IV.  She is quite a Gal.  Here is her site.   She has Jane, Kim's and Stann's  info  posted along with more under her "Patient Perspectives" at:  http://www.melanomaresources.info/

Be glad to talk verbally .

Maria, will provide more when I get back from town, but for now some general IL-2 info. 

The aim is to administer one bag every 8 hours for a maximum of 14 bags. Normally one is able to tolerate around 7 to 9 bags in the week. Normal protocol is 5 days for the first week of each of the standard three rounds, then a one or two week break. I recommend a 2 week break, before returning for the second week of each round. Scans are taken about a month after the second weeks IL-2 treatment. If less than 25% growth, they usually consider one to be responding enough to start the second round after about a two month period between week two and week one of the next round. My Oncologist takes patients into the hospital on Monday and usually discharges them on Saturday if the blood work/body functions are acceptable.

My Oncologist has worked with IL-2 since the early 1980;s and helped develop the standard protocols for when the FDA finally approved IL-2 for Melanoma in the late 1990's. You do want a Doctor and staff that are all experienced with administering IL-2. While the side effects can be rough (horrendous) if not caught as soon as they start, they can usually be controlled without one going through the extremes that could be experienced. I urge people not to try to “man it out” with the side effects. The timing for start of side effects is fairly consistent for a person. After the first few bags you should have it down and know when to expect what to happen.

As you read, I tried that once and instead of one shot, it took three and too much time to stop my bad shakes (the Rigors). I urge people to try to keep the fluids going regularly, not to have to try to catch-up after the urine flow and kidneys have started shutting down. Keeping some bananas on hand will help keep ones potassium levels up. The larger the heating pad that is available, the better. Have warm blankets available shortly after the bag is administered.

Don't be surprised if there are some hallucinations, this is not unusual. I didn't have any, but know several people that did.

If a man has a mustache I recommend shaving it before receiving the IL-2. The nasal discharge I had caused the skin of my upper lip to become raw and the mustache matted up with scabs. (First week only, knew better afterwards.) (Much rougher to cut when it is matted with scabs on raw flesh!)

If possible, someone should stay with the patient most of the time, especially for several hours after each bag of IL-2. At the first indication of either chills/coldness or nausea the nurses should be immediately notified and provide meds to counteract within a few minutes. (In less than 5 minutes)

Low blood pressure was one of most peoples main problems. On a few, the BP goes up. Learn what happens before taking any licorice. Black Licorice raises ones blood pressure (can get licorice tea) The tea is awful tasting, more palatable if mixed with another tea. The other colors of “licorice” actually contain no licorice, only the black contains actual licorice. They skip bags when the BP drops below 90.

Our wonderful Jane from Maine has helped many people and produced much information about IL-2 treatment at : http://melanomaresources.info/jane.html#homenotes

I do suggest being careful about the use of Atavan. On some people (me) it does not result in the desired effect. It aggravated my Mother rather than calming her. I could not function properly after taking it myself. Most people have no problem with it. It is often used in hospitals and nursing homes to “calm” older people so that they aren't “problems”.

My Oncologist said I could take most of my supplements during treatment but to cut out things that act as blood thinners.  They will give one many shots of blood thinners during the week of each Il-2 hospitalization. 

Make sure you receive Lasix (FUROSEMIDE) water pills, or another type of diuretic before you leave the hospital. This is necessary to eliminate the excess fluid that develops in ones body from the capillary leak caused by the Il-2.

Don't be surprised when after a couple of days food loses it's taste to one. The taste resumes a few days after finishing the week of IL-2.

Try to eat 2 bananas a day so your potassium levels don’t get depleted.  When mouth starts feeling sore (it's usually thrush) Magic mouthwash/lidocaine viscose

Have they said if they will be using a Bard port or a Pic line?

My story/journal is at :  http://www.carepages.com/carepages/JerryEllis

**************************************************************************************************************
I see that Janner has redone her site.  Janner, while a multiple primary person is still a stage I person, Her father is stage IV.  She is quite a Gal.  Here is her site.   She has Jane, Kim's and Stann's  info  posted along with more under her "Patient Perspectives" at:  http://www.melanomaresources.info/

Be glad to talk verbally .

Maria, will provide more when I get back from town, but for now some general IL-2 info. 

The aim is to administer one bag every 8 hours for a maximum of 14 bags. Normally one is able to tolerate around 7 to 9 bags in the week. Normal protocol is 5 days for the first week of each of the standard three rounds, then a one or two week break. I recommend a 2 week break, before returning for the second week of each round. Scans are taken about a month after the second weeks IL-2 treatment. If less than 25% growth, they usually consider one to be responding enough to start the second round after about a two month period between week two and week one of the next round. My Oncologist takes patients into the hospital on Monday and usually discharges them on Saturday if the blood work/body functions are acceptable.

My Oncologist has worked with IL-2 since the early 1980;s and helped develop the standard protocols for when the FDA finally approved IL-2 for Melanoma in the late 1990's. You do want a Doctor and staff that are all experienced with administering IL-2. While the side effects can be rough (horrendous) if not caught as soon as they start, they can usually be controlled without one going through the extremes that could be experienced. I urge people not to try to “man it out” with the side effects. The timing for start of side effects is fairly consistent for a person. After the first few bags you should have it down and know when to expect what to happen.

As you read, I tried that once and instead of one shot, it took three and too much time to stop my bad shakes (the Rigors). I urge people to try to keep the fluids going regularly, not to have to try to catch-up after the urine flow and kidneys have started shutting down. Keeping some bananas on hand will help keep ones potassium levels up. The larger the heating pad that is available, the better. Have warm blankets available shortly after the bag is administered.

Don't be surprised if there are some hallucinations, this is not unusual. I didn't have any, but know several people that did.

If a man has a mustache I recommend shaving it before receiving the IL-2. The nasal discharge I had caused the skin of my upper lip to become raw and the mustache matted up with scabs. (First week only, knew better afterwards.) (Much rougher to cut when it is matted with scabs on raw flesh!)

If possible, someone should stay with the patient most of the time, especially for several hours after each bag of IL-2. At the first indication of either chills/coldness or nausea the nurses should be immediately notified and provide meds to counteract within a few minutes. (In less than 5 minutes)

Low blood pressure was one of most peoples main problems. On a few, the BP goes up. Learn what happens before taking any licorice. Black Licorice raises ones blood pressure (can get licorice tea) The tea is awful tasting, more palatable if mixed with another tea. The other colors of “licorice” actually contain no licorice, only the black contains actual licorice. They skip bags when the BP drops below 90.

Our wonderful Jane from Maine has helped many people and produced much information about IL-2 treatment at : http://melanomaresources.info/jane.html#homenotes

I do suggest being careful about the use of Atavan. On some people (me) it does not result in the desired effect. It aggravated my Mother rather than calming her. I could not function properly after taking it myself. Most people have no problem with it. It is often used in hospitals and nursing homes to “calm” older people so that they aren't “problems”.

My Oncologist said I could take most of my supplements during treatment but to cut out things that act as blood thinners.  They will give one many shots of blood thinners during the week of each Il-2 hospitalization. 

Make sure you receive Lasix (FUROSEMIDE) water pills, or another type of diuretic before you leave the hospital. This is necessary to eliminate the excess fluid that develops in ones body from the capillary leak caused by the Il-2.

Don't be surprised when after a couple of days food loses it's taste to one. The taste resumes a few days after finishing the week of IL-2.

Try to eat 2 bananas a day so your potassium levels don’t get depleted.  When mouth starts feeling sore (it's usually thrush) Magic mouthwash/lidocaine viscose

Have they said if they will be using a Bard port or a Pic line?

My story/journal is at :  http://www.carepages.com/carepages/JerryEllis

**************************************************************************************************************
I see that Janner has redone her site.  Janner, while a multiple primary person is still a stage I person, Her father is stage IV.  She is quite a Gal.  Here is her site.   She has Jane, Kim's and Stann's  info  posted along with more under her "Patient Perspectives" at:  http://www.melanomaresources.info/

Be glad to talk verbally .