Please Help

Denise,

I'm so sorry you are having such a tough time.  I'm sure some of our smart folks will chime in with some great advice.  I'm not sure if you have seen the thread on MIF from Jonathan but he is enrolled in a very promising ADC clinical trial.  This might be another option for you.  Not sure of the eligibility requirements in regards to stable brain mets but I believe it has a fairly liberal eligiblity on previous treatments.  The results seem to be pretty quick if you are a responder and the side effects don't seem to be too bad.  The biggest negative now is it's only phase I so openings are scarce and the only locations I know are Detroit, Nashville, and LA. 

http://forum.melanomainternational.org/mif/viewtopic.php?f=54&t=34242 

Prayers for you Denise.

Brian

Denise,

I'm so sorry you are having such a tough time.  I'm sure some of our smart folks will chime in with some great advice.  I'm not sure if you have seen the thread on MIF from Jonathan but he is enrolled in a very promising ADC clinical trial.  This might be another option for you.  Not sure of the eligibility requirements in regards to stable brain mets but I believe it has a fairly liberal eligiblity on previous treatments.  The results seem to be pretty quick if you are a responder and the side effects don't seem to be too bad.  The biggest negative now is it's only phase I so openings are scarce and the only locations I know are Detroit, Nashville, and LA. 

http://forum.melanomainternational.org/mif/viewtopic.php?f=54&t=34242 

Prayers for you Denise.

Brian

Denise,

I'm so sorry you are having such a tough time.  I'm sure some of our smart folks will chime in with some great advice.  I'm not sure if you have seen the thread on MIF from Jonathan but he is enrolled in a very promising ADC clinical trial.  This might be another option for you.  Not sure of the eligibility requirements in regards to stable brain mets but I believe it has a fairly liberal eligiblity on previous treatments.  The results seem to be pretty quick if you are a responder and the side effects don't seem to be too bad.  The biggest negative now is it's only phase I so openings are scarce and the only locations I know are Detroit, Nashville, and LA. 

http://forum.melanomainternational.org/mif/viewtopic.php?f=54&t=34242 

Prayers for you Denise.

Brian

FYI, I am getting a lot of skin tags and squamous cell stuff from the Trafilnar, but I was told that once they resolve, they generally stay gone after about a month or two.
What is your doctor saying about the options you’ve outlined?
Karen

FYI, I am getting a lot of skin tags and squamous cell stuff from the Trafilnar, but I was told that once they resolve, they generally stay gone after about a month or two.
What is your doctor saying about the options you’ve outlined?
Karen

FYI, I am getting a lot of skin tags and squamous cell stuff from the Trafilnar, but I was told that once they resolve, they generally stay gone after about a month or two.
What is your doctor saying about the options you’ve outlined?
Karen

I’m sorry you are having such a hard time, be sure you are getting lots of clear fluids, low bp could be causing the dizziness. I had that on Ipi. I’ve heard of temodar given with other Chemos, like avastin, and others, but what does your dr say? IL2 is usually given on its own, inpatient. A few centers still combine it w chemo ( biochemo) .

I have heard of people getting surgery while on Ipi or PD1, definitely.

Hang in there and keep fighting! I continue to pray for you.

Amy

I’m sorry you are having such a hard time, be sure you are getting lots of clear fluids, low bp could be causing the dizziness. I had that on Ipi. I’ve heard of temodar given with other Chemos, like avastin, and others, but what does your dr say? IL2 is usually given on its own, inpatient. A few centers still combine it w chemo ( biochemo) .

I have heard of people getting surgery while on Ipi or PD1, definitely.

Hang in there and keep fighting! I continue to pray for you.

Amy

I’m sorry you are having such a hard time, be sure you are getting lots of clear fluids, low bp could be causing the dizziness. I had that on Ipi. I’ve heard of temodar given with other Chemos, like avastin, and others, but what does your dr say? IL2 is usually given on its own, inpatient. A few centers still combine it w chemo ( biochemo) .

I have heard of people getting surgery while on Ipi or PD1, definitely.

Hang in there and keep fighting! I continue to pray for you.

Amy

Denise,

I don't have more to add to the other responses but just want to say I'll be sending good thoughts your way!!! I do not post on here much but check the board frequently. Your positive energy and strength have impressed and inspired me to remain hopeful many times. I hope you and your doctor are able to quickly identify some good next steps for you.

Best,

Doro

Denise,

I don't have more to add to the other responses but just want to say I'll be sending good thoughts your way!!! I do not post on here much but check the board frequently. Your positive energy and strength have impressed and inspired me to remain hopeful many times. I hope you and your doctor are able to quickly identify some good next steps for you.

Best,

Doro

Denise,

I don't have more to add to the other responses but just want to say I'll be sending good thoughts your way!!! I do not post on here much but check the board frequently. Your positive energy and strength have impressed and inspired me to remain hopeful many times. I hope you and your doctor are able to quickly identify some good next steps for you.

Best,

Doro

Oh, Denise! I hope you're wrong. I SO hope you're wrong and that the ipi is working even if it doesn't seem that way to you now. It is not at all unusual for it to take 3 or 4 months to have an effect. You're still trying to keep the melanoma at bay long enough for the ipi to work. Try not to get too rattled and discouraged yet. 

By all means, do get yourself to drink lots of fluids. I agree that some of your symptoms could be dehydration. Try to keep eating healthfully. If you don't feel like eating, try finding some combination of fruits and veggies that you like and drink a couple of "green smoothies" each day– that's a good way to get fluids, too.

You won't know for sure what is going on with you, especially in your brain, until the next set of scans. Do you know when they are scheduled? 

Even though I am not convinced that the dabrafenib + ipi is not working, I think you are smart to be thinking of a Plan B. A Phase 1 clinical trial might be your best bet. True, Phase 1 trials mean they don't know if the drug will work or not. The good news is that you are certain of getting the drug, not a placebo. So check what Phase 1 trials might be available to you with brain mets and make contact with the trial coordinators. You might even put their phone numbers on "speed dial" in case you really do need them some day.

Your other option might be biochemo, which is a combination of several different drugs and chemicals including cisplatin, temodar, IL-2 and some others. Different treatment centers use different "recipes". I think that Dr. Minor has had success with biochemo, so you should ask him about it. 

Biochemo is a very rough treatment and it doesn't work in most people. But when it does work it can work for a long time. Search this site for "biochemo" and you will see a lot of posts about it. 

I know that you are feeling frightened and discouraged just now. But you do not KNOW exactly what is going on with your tumors. Try your best to hang onto your normal Positive Mental Attitude and start looking into a Plan B. Maybe just knowing what you will do IF you need to do something else will help you feel calmer.  

Oh, Denise! I hope you're wrong. I SO hope you're wrong and that the ipi is working even if it doesn't seem that way to you now. It is not at all unusual for it to take 3 or 4 months to have an effect. You're still trying to keep the melanoma at bay long enough for the ipi to work. Try not to get too rattled and discouraged yet. 

By all means, do get yourself to drink lots of fluids. I agree that some of your symptoms could be dehydration. Try to keep eating healthfully. If you don't feel like eating, try finding some combination of fruits and veggies that you like and drink a couple of "green smoothies" each day– that's a good way to get fluids, too.

You won't know for sure what is going on with you, especially in your brain, until the next set of scans. Do you know when they are scheduled? 

Even though I am not convinced that the dabrafenib + ipi is not working, I think you are smart to be thinking of a Plan B. A Phase 1 clinical trial might be your best bet. True, Phase 1 trials mean they don't know if the drug will work or not. The good news is that you are certain of getting the drug, not a placebo. So check what Phase 1 trials might be available to you with brain mets and make contact with the trial coordinators. You might even put their phone numbers on "speed dial" in case you really do need them some day.

Your other option might be biochemo, which is a combination of several different drugs and chemicals including cisplatin, temodar, IL-2 and some others. Different treatment centers use different "recipes". I think that Dr. Minor has had success with biochemo, so you should ask him about it. 

Biochemo is a very rough treatment and it doesn't work in most people. But when it does work it can work for a long time. Search this site for "biochemo" and you will see a lot of posts about it. 

I know that you are feeling frightened and discouraged just now. But you do not KNOW exactly what is going on with your tumors. Try your best to hang onto your normal Positive Mental Attitude and start looking into a Plan B. Maybe just knowing what you will do IF you need to do something else will help you feel calmer.  

Oh, Denise! I hope you're wrong. I SO hope you're wrong and that the ipi is working even if it doesn't seem that way to you now. It is not at all unusual for it to take 3 or 4 months to have an effect. You're still trying to keep the melanoma at bay long enough for the ipi to work. Try not to get too rattled and discouraged yet. 

By all means, do get yourself to drink lots of fluids. I agree that some of your symptoms could be dehydration. Try to keep eating healthfully. If you don't feel like eating, try finding some combination of fruits and veggies that you like and drink a couple of "green smoothies" each day– that's a good way to get fluids, too.

You won't know for sure what is going on with you, especially in your brain, until the next set of scans. Do you know when they are scheduled? 

Even though I am not convinced that the dabrafenib + ipi is not working, I think you are smart to be thinking of a Plan B. A Phase 1 clinical trial might be your best bet. True, Phase 1 trials mean they don't know if the drug will work or not. The good news is that you are certain of getting the drug, not a placebo. So check what Phase 1 trials might be available to you with brain mets and make contact with the trial coordinators. You might even put their phone numbers on "speed dial" in case you really do need them some day.

Your other option might be biochemo, which is a combination of several different drugs and chemicals including cisplatin, temodar, IL-2 and some others. Different treatment centers use different "recipes". I think that Dr. Minor has had success with biochemo, so you should ask him about it. 

Biochemo is a very rough treatment and it doesn't work in most people. But when it does work it can work for a long time. Search this site for "biochemo" and you will see a lot of posts about it. 

I know that you are feeling frightened and discouraged just now. But you do not KNOW exactly what is going on with your tumors. Try your best to hang onto your normal Positive Mental Attitude and start looking into a Plan B. Maybe just knowing what you will do IF you need to do something else will help you feel calmer.  

Denise prayers sent your way.Hoping you get the right treatment or trial you need asap.You are a true fighter.Beat the Beast ……Al

Denise prayers sent your way.Hoping you get the right treatment or trial you need asap.You are a true fighter.Beat the Beast ……Al

Denise prayers sent your way.Hoping you get the right treatment or trial you need asap.You are a true fighter.Beat the Beast ……Al

Denise,

Just letting you know I feel your despair and my heart goes out to you.  I don't have any suggestions for you other than the temodar might be right for you at this time.  Since I joined MPIP, I've seen many posts from other's whose options were shrinking and they chose temodar with good results/and or until they could get to the next trial/treatment option.  I will continue with positive thoughts and prayer for a treatment soon, that will renew your hope and restore your health.

You are such a fierce warrior in this fight and have shown amazing strength in your mindset and physical endurance. You are an inspiration to all of us who know your story and we continue to battle for and with you.  Stay strong, keep fighting!

Swanee

Denise,

Just letting you know I feel your despair and my heart goes out to you.  I don't have any suggestions for you other than the temodar might be right for you at this time.  Since I joined MPIP, I've seen many posts from other's whose options were shrinking and they chose temodar with good results/and or until they could get to the next trial/treatment option.  I will continue with positive thoughts and prayer for a treatment soon, that will renew your hope and restore your health.

You are such a fierce warrior in this fight and have shown amazing strength in your mindset and physical endurance. You are an inspiration to all of us who know your story and we continue to battle for and with you.  Stay strong, keep fighting!

Swanee

Denise,

Just letting you know I feel your despair and my heart goes out to you.  I don't have any suggestions for you other than the temodar might be right for you at this time.  Since I joined MPIP, I've seen many posts from other's whose options were shrinking and they chose temodar with good results/and or until they could get to the next trial/treatment option.  I will continue with positive thoughts and prayer for a treatment soon, that will renew your hope and restore your health.

You are such a fierce warrior in this fight and have shown amazing strength in your mindset and physical endurance. You are an inspiration to all of us who know your story and we continue to battle for and with you.  Stay strong, keep fighting!

Swanee

Here are some of my experiences with IL2:

I would check into the hospital early I’m Monday morning.

This was at Yale New Haven hospital. They do not use a n ICU unit, but a really nice, modern dedicated unit. Each room is private and has some sort of a fold-out recliner that a family-member can stay in.

First thing was Atavan. As soon as vital signs are taken, a pic line is set up. Everything that was done was done at my bedside–they used a fluoroscopy unit to get the line in.

After that, first bag of IL-2is given. (You’ll have to forgive me, I don’t remember how many they give, this was almost 2 years ago).

Many people have said they’ve gotten rigors after they start the drug; that didn’t happen to me.

As soon as the first bag started, my entire body would turn bright red and itchy. To answer your question, every symptom I had was treated with a drug. The itching was treated w/Benadryl or some other antihistamine. I had diarrhea most of the time, treated by lomotil or Imodium. I also gained about 20 lbs, as most people do, but it comes off in about a week.

After that, I had 2 bags of IL2 a day until Friday morning. Before every bag, they would ask me to count backwards from 100 by 7’s. I did a cheat sheet, but the doctor found it. It’s a good thing she had a sense of humor.

I’m pretty sure I’m telling you most things, but I’m sure I’ve forgotten a lot too. I did this for a total of 3 weeks, after determining that I was a partial responder.

Until I started taking Tranfilar, I was always a partial responder to every treatment, except Temodar, which didn’t help at all.

I hope this helps, Denise. If you want to PM me, I’ll be happy to answer any questions.

Take care,
Karen

Denise, I am really sorry to see this news. I do know that you can have surgery while on the ipi ( I did) . Also… sometimes the ipi does not take too long to kick in…AND sometimes tumors actually increase a little in size before they start shrinking as a part of the whole immune response – so there is still hope that things can be working. I understand your fears, though, and am not trying to minimize those.. I do not know enough about what is currently out there trial-wise, I am sure others have much more info about that. When is your next scan? Also… there are other poss explanations for your symptoms – I had incredibly severe pains in my head, and dizziness when my pituitary got inflamed and swollen due to the ipi. When were your last labs and did they check thyroid AND cortisol levels? It took a few weeks while I had that headache for them to track down what was going on. Just a couple of ideas….

Tina

Denise, I am really sorry to see this news. I do know that you can have surgery while on the ipi ( I did) . Also… sometimes the ipi does not take too long to kick in…AND sometimes tumors actually increase a little in size before they start shrinking as a part of the whole immune response – so there is still hope that things can be working. I understand your fears, though, and am not trying to minimize those.. I do not know enough about what is currently out there trial-wise, I am sure others have much more info about that. When is your next scan? Also… there are other poss explanations for your symptoms – I had incredibly severe pains in my head, and dizziness when my pituitary got inflamed and swollen due to the ipi. When were your last labs and did they check thyroid AND cortisol levels? It took a few weeks while I had that headache for them to track down what was going on. Just a couple of ideas….

Tina

Denise, I am really sorry to see this news. I do know that you can have surgery while on the ipi ( I did) . Also… sometimes the ipi does not take too long to kick in…AND sometimes tumors actually increase a little in size before they start shrinking as a part of the whole immune response – so there is still hope that things can be working. I understand your fears, though, and am not trying to minimize those.. I do not know enough about what is currently out there trial-wise, I am sure others have much more info about that. When is your next scan? Also… there are other poss explanations for your symptoms – I had incredibly severe pains in my head, and dizziness when my pituitary got inflamed and swollen due to the ipi. When were your last labs and did they check thyroid AND cortisol levels? It took a few weeks while I had that headache for them to track down what was going on. Just a couple of ideas….

Tina

Dear Denise,

I am so sorry you are having such a hard time. I do not have another good advice, I think most options are said before. I hope Ipi will work finally for you, at least will slow things down. There are still options, you live in the states, actually the best place to live in with melanoma. You are so strong, go on and give melanoma a hard kick!

My thaughts are with you! Jenny

Dear Denise,

I am so sorry you are having such a hard time. I do not have another good advice, I think most options are said before. I hope Ipi will work finally for you, at least will slow things down. There are still options, you live in the states, actually the best place to live in with melanoma. You are so strong, go on and give melanoma a hard kick!

My thaughts are with you! Jenny

Dear Denise,

I am so sorry you are having such a hard time. I do not have another good advice, I think most options are said before. I hope Ipi will work finally for you, at least will slow things down. There are still options, you live in the states, actually the best place to live in with melanoma. You are so strong, go on and give melanoma a hard kick!

My thaughts are with you! Jenny

Hi Denise,

I haven't been on the Board too much lately, but you have been in my thoughts and prayers. Many of your melanoma experiences have mirrored my husband's, so I've felt a particular concern in hearing of your treatments and progress. I'm so sorry to hear that you are scared and think the Ipi might not be working. I don't have a lot of knowledge to share, but I have heard, like others on this Board, that the Ipi can make things worse before they get better. I do believe this was the case with my husband, Don. Actually, he was quite sick for the vast majority of the time he was on Ipi. It has now been 6 weeks since his last dose of Ipi, and the doctors have told us he is definitely responding. But it did take a long time before the improvements were noticeable. So don't give up!

You continue to be in my thoughts. Stay strong. I hate this horrible disease!

Janet

Hi Denise,

I haven't been on the Board too much lately, but you have been in my thoughts and prayers. Many of your melanoma experiences have mirrored my husband's, so I've felt a particular concern in hearing of your treatments and progress. I'm so sorry to hear that you are scared and think the Ipi might not be working. I don't have a lot of knowledge to share, but I have heard, like others on this Board, that the Ipi can make things worse before they get better. I do believe this was the case with my husband, Don. Actually, he was quite sick for the vast majority of the time he was on Ipi. It has now been 6 weeks since his last dose of Ipi, and the doctors have told us he is definitely responding. But it did take a long time before the improvements were noticeable. So don't give up!

You continue to be in my thoughts. Stay strong. I hate this horrible disease!

Janet

Hi Denise,

I haven't been on the Board too much lately, but you have been in my thoughts and prayers. Many of your melanoma experiences have mirrored my husband's, so I've felt a particular concern in hearing of your treatments and progress. I'm so sorry to hear that you are scared and think the Ipi might not be working. I don't have a lot of knowledge to share, but I have heard, like others on this Board, that the Ipi can make things worse before they get better. I do believe this was the case with my husband, Don. Actually, he was quite sick for the vast majority of the time he was on Ipi. It has now been 6 weeks since his last dose of Ipi, and the doctors have told us he is definitely responding. But it did take a long time before the improvements were noticeable. So don't give up!

You continue to be in my thoughts. Stay strong. I hate this horrible disease!

Janet

Denise,

You haven't checked in on the forum in a while.  How are things going?  Did you get in to see your doctor?

Susan

Denise,

You haven't checked in on the forum in a while.  How are things going?  Did you get in to see your doctor?

Susan

Denise,

You haven't checked in on the forum in a while.  How are things going?  Did you get in to see your doctor?

Susan