Contacting your long distance doc – question

Hi,

This is weird. First off, this is my first time posting anything. I wish I'd started 2 years ago when this disease reared it's ugly head, with 2 of my sons.

In 2015, it came back – fast and bad. My son's name is Arthur, too. In March they found tumors on the shoulder joint, which was the initial cancersite, on his spine, and 3 spots in his brain. He drove to UCCC to get a 2nd opinion, but while he was there, one of the tumors in his brain hemorraged and he had to have emergency brain surgury, preformed bby the neuro-oncologist Dr. Lesniak. Also there eas Dr. Gajewski, who is now his oncologist. He went on Braf iinhinitors for 4 weeks to reduce the tumors, because the spine (now several spots causing lots of pain) and the tumors did shrink, significantly. BUT THE MEDICINE DID NOT CROSS THE BRAIN BARRIER, and the MRI in june showed 3 spots (this was befor Tanifar and the other BRAF inhibitor.) Dr. Gajewski wanted another MRI to use as a baseline before starting him on Ketruda. We were so excited, because the scan showed significant reduction., and the tumor in his liver was gone. So we expected good results for the baseline MRI, but it was devestating. He had 'multiple lesions', which was actually so many we couldn't even count them. When we got back to Rckford, that's when we actually saw the MRI. Arthur did not come in (he was getting fluids, anti-nausea meds and steroids, because he was alredy in decline.) He had to do another round of radiation just to buy him some time. He is getting more radiation than the safe limit, but there was no alternative.His decline was so rapid it was indescribable. But I'll try: loss of balance, weakness of right side with his foot dragging, headaches, vommiting, cognitive decline (he was so slow in everything, he couldn't figure anything out – i.e. he would cap the water bottle, uncap it, try to drink from the cap…) and memory loss, dementia. In 1 WEEK!

After only the 1st radiation treatment he could walk better, the steroids help with the nausea and fatigue. Our Rockford Drs. called these treatments 'comfort measures" and suggested Hospice. I asked Dr Gyjewski about trials, but he said there weren't any.

Now we are weening him off the steroids so we can go back to Chicago for a second infusion of Ketruda. 

Who is Dr. Luke? I wrote a letter to Dr. Lesniak  asking about clinical trials on Aug 5, and I missed him by one day, he is out until the 25th or something. Here is the letter:

I guess it won't let me paste, that's weird.

I just thought it Bizarre that the 1st time I go on this forum and there is an Arthur that sees Dr Gajewski.

Do you know of any trials anywhere?

SarahA (Arthur's mom. (he's 24, btw)

Glad you got through to the right person (doc) to get past what must be their standard barrier/boundary.

On the great experience side, Providence in Portland was and has been very helpful and made the whole experience very non-frustrating. The clinical coordinator for solid tumor trials talked with me a number of times on the phone letting me know about the status of cohorts opening. The cohorts in the trial I was interested in kept getting postponed (phase 1 participants encountering adverse events). When it looked like there was an opening, that's when I made the appt and flew up. By the time I got there the cohort had been postponed once again (MEDI4736 + MEK), but they just got slots for another (PD1 + anti-KIR5) which they got me into. 

Another very helpful one on the phone was Dana Farber. 

Some others weren't so helpful on the phone. MDA and MSK both wanted me to come in person (which I did with MDA). Maybe they get so many phone calls they've adopted the policy of not talking unless come in for appt.

Glad you got through to the right person (doc) to get past what must be their standard barrier/boundary.

On the great experience side, Providence in Portland was and has been very helpful and made the whole experience very non-frustrating. The clinical coordinator for solid tumor trials talked with me a number of times on the phone letting me know about the status of cohorts opening. The cohorts in the trial I was interested in kept getting postponed (phase 1 participants encountering adverse events). When it looked like there was an opening, that's when I made the appt and flew up. By the time I got there the cohort had been postponed once again (MEDI4736 + MEK), but they just got slots for another (PD1 + anti-KIR5) which they got me into. 

Another very helpful one on the phone was Dana Farber. 

Some others weren't so helpful on the phone. MDA and MSK both wanted me to come in person (which I did with MDA). Maybe they get so many phone calls they've adopted the policy of not talking unless come in for appt.

Glad you got through to the right person (doc) to get past what must be their standard barrier/boundary.

On the great experience side, Providence in Portland was and has been very helpful and made the whole experience very non-frustrating. The clinical coordinator for solid tumor trials talked with me a number of times on the phone letting me know about the status of cohorts opening. The cohorts in the trial I was interested in kept getting postponed (phase 1 participants encountering adverse events). When it looked like there was an opening, that's when I made the appt and flew up. By the time I got there the cohort had been postponed once again (MEDI4736 + MEK), but they just got slots for another (PD1 + anti-KIR5) which they got me into. 

Another very helpful one on the phone was Dana Farber. 

Some others weren't so helpful on the phone. MDA and MSK both wanted me to come in person (which I did with MDA). Maybe they get so many phone calls they've adopted the policy of not talking unless come in for appt.

 Thanks, again!

 Thanks, again!

 Thanks, again!

Sarah, when I searched for clinical trials 4 years ago dealing with brain tumors, it was very frustrating to find out that bascially almost no clinical trials wanted anything to do with brain mets that weren't both treated and stable/unchanged for at least 30 days. I came to see that many if not most trials list either "CNS disease" or "brain tumors" in the exclusion list unless treated and stable. On clinicaltrials.gov, the listing format has both "Inclusion Criteria" and "Exclusion Criteria". I got so sick of seeing either "CNS" or "brain" in the exclusion list. It's even more difficult if there's no tumors in the body, which means they don't have anything to measure to decide if someone is responding or not.

There's a very few trials out there that look for brain tumor patients, but the criteria of the ones I looked at a few years ago seemed pretty tough also. 

I'm wondering, since you saw good signs from him after the 1st radiation treatment, if there'll be a point where his brain has been stable for 30 days. In that case, maybe having a small set of trials picked out and the wheels in motion for each one (contact the trial coordinator, confirm if he's a candidate, possibly even make an appointment) would maybe get him in for an acceptance appointment as soon after the 30 days are up as possible. I never tested that path myself. 

I had symptoms similar to some of your son's the last time I dealt with brain mets 4 years ago. Balance was okay but had difficulty figuring things out which resembled dementia. I was treated with a double craniotomy — I felt so much better when I woke up, dementia gone. Then Gamma Knife. Then IPI. 

I hope the Keytruda works for your son along with the radiation that's been helping him. 

That's probably why Gajewski said that there weren't any trials, Arthur probably isn't a candidate for any of them. We did steriotactic radiation-cyborknife- is that the same as gamma knife? idk what a double craniotomy is, but i'll look it up. The Drs aren't real hopeful that the radiation will do much/last long, because he had initial WBR and one of the larger tumors hemorraged, so after removing it they did steriotactic radiation on the cavity and on the other 2. Within 2 months he had 3 more, then a month later the "too many to count" MRI.

I can't thak you enough for sharing your story and your suggestions.

Sarah

That's probably why Gajewski said that there weren't any trials, Arthur probably isn't a candidate for any of them. We did steriotactic radiation-cyborknife- is that the same as gamma knife? idk what a double craniotomy is, but i'll look it up. The Drs aren't real hopeful that the radiation will do much/last long, because he had initial WBR and one of the larger tumors hemorraged, so after removing it they did steriotactic radiation on the cavity and on the other 2. Within 2 months he had 3 more, then a month later the "too many to count" MRI.

I can't thak you enough for sharing your story and your suggestions.

Sarah

Sarah,

My heart goes out to you and your son. I truly don't know what you're going through.

For me the cumulative number of brain tumors found went from 1 to 2, to 3 to 5, over nine months. The double craniotomy was to physically removed #2 and #3. They did gamma knife to #4 and #5. The doc put me on IPI but I didn't hold out much hope as I thought there must be more disease. Either there wasn't, or more likely my doc thinks I got some benefit from IPI.

I'm not an oncologist, all I can really talk about ismy situation. It's scary how faster they grew in my brain (doubled in a couple of weeks) compared to in my lungs. I hope there's some relief from the symptoms he's currently experiencing, and I hope something will can be found to stop the progress. 

I'm thinking of him and you.

Sarah,

My heart goes out to you and your son. I truly don't know what you're going through.

For me the cumulative number of brain tumors found went from 1 to 2, to 3 to 5, over nine months. The double craniotomy was to physically removed #2 and #3. They did gamma knife to #4 and #5. The doc put me on IPI but I didn't hold out much hope as I thought there must be more disease. Either there wasn't, or more likely my doc thinks I got some benefit from IPI.

I'm not an oncologist, all I can really talk about ismy situation. It's scary how faster they grew in my brain (doubled in a couple of weeks) compared to in my lungs. I hope there's some relief from the symptoms he's currently experiencing, and I hope something will can be found to stop the progress. 

I'm thinking of him and you.

Sarah,

My heart goes out to you and your son. I truly don't know what you're going through.

For me the cumulative number of brain tumors found went from 1 to 2, to 3 to 5, over nine months. The double craniotomy was to physically removed #2 and #3. They did gamma knife to #4 and #5. The doc put me on IPI but I didn't hold out much hope as I thought there must be more disease. Either there wasn't, or more likely my doc thinks I got some benefit from IPI.

I'm not an oncologist, all I can really talk about ismy situation. It's scary how faster they grew in my brain (doubled in a couple of weeks) compared to in my lungs. I hope there's some relief from the symptoms he's currently experiencing, and I hope something will can be found to stop the progress. 

I'm thinking of him and you.

That's probably why Gajewski said that there weren't any trials, Arthur probably isn't a candidate for any of them. We did steriotactic radiation-cyborknife- is that the same as gamma knife? idk what a double craniotomy is, but i'll look it up. The Drs aren't real hopeful that the radiation will do much/last long, because he had initial WBR and one of the larger tumors hemorraged, so after removing it they did steriotactic radiation on the cavity and on the other 2. Within 2 months he had 3 more, then a month later the "too many to count" MRI.

I can't thak you enough for sharing your story and your suggestions.

Sarah

Sarah, when I searched for clinical trials 4 years ago dealing with brain tumors, it was very frustrating to find out that bascially almost no clinical trials wanted anything to do with brain mets that weren't both treated and stable/unchanged for at least 30 days. I came to see that many if not most trials list either "CNS disease" or "brain tumors" in the exclusion list unless treated and stable. On clinicaltrials.gov, the listing format has both "Inclusion Criteria" and "Exclusion Criteria". I got so sick of seeing either "CNS" or "brain" in the exclusion list. It's even more difficult if there's no tumors in the body, which means they don't have anything to measure to decide if someone is responding or not.

There's a very few trials out there that look for brain tumor patients, but the criteria of the ones I looked at a few years ago seemed pretty tough also. 

I'm wondering, since you saw good signs from him after the 1st radiation treatment, if there'll be a point where his brain has been stable for 30 days. In that case, maybe having a small set of trials picked out and the wheels in motion for each one (contact the trial coordinator, confirm if he's a candidate, possibly even make an appointment) would maybe get him in for an acceptance appointment as soon after the 30 days are up as possible. I never tested that path myself. 

I had symptoms similar to some of your son's the last time I dealt with brain mets 4 years ago. Balance was okay but had difficulty figuring things out which resembled dementia. I was treated with a double craniotomy — I felt so much better when I woke up, dementia gone. Then Gamma Knife. Then IPI. 

I hope the Keytruda works for your son along with the radiation that's been helping him. 

Sarah, when I searched for clinical trials 4 years ago dealing with brain tumors, it was very frustrating to find out that bascially almost no clinical trials wanted anything to do with brain mets that weren't both treated and stable/unchanged for at least 30 days. I came to see that many if not most trials list either "CNS disease" or "brain tumors" in the exclusion list unless treated and stable. On clinicaltrials.gov, the listing format has both "Inclusion Criteria" and "Exclusion Criteria". I got so sick of seeing either "CNS" or "brain" in the exclusion list. It's even more difficult if there's no tumors in the body, which means they don't have anything to measure to decide if someone is responding or not.

There's a very few trials out there that look for brain tumor patients, but the criteria of the ones I looked at a few years ago seemed pretty tough also. 

I'm wondering, since you saw good signs from him after the 1st radiation treatment, if there'll be a point where his brain has been stable for 30 days. In that case, maybe having a small set of trials picked out and the wheels in motion for each one (contact the trial coordinator, confirm if he's a candidate, possibly even make an appointment) would maybe get him in for an acceptance appointment as soon after the 30 days are up as possible. I never tested that path myself. 

I had symptoms similar to some of your son's the last time I dealt with brain mets 4 years ago. Balance was okay but had difficulty figuring things out which resembled dementia. I was treated with a double craniotomy — I felt so much better when I woke up, dementia gone. Then Gamma Knife. Then IPI. 

I hope the Keytruda works for your son along with the radiation that's been helping him. 

The other frustrating thing for me was I had brain tumors, but no disease in my body. While that is great for not having to deal with more tumors, it makes getting into a clinical trial even harder. I don't know if that's your son's case. But for me it was. S0ometimes they need two tumors in the body, one to biopsy at the beginning of the trial and the other to measure without having being disturbed by a biopsy. But no tumor in the body meant no clinical trial for me, no matter that my brain had been treated and was stable.

– Kyle

The other frustrating thing for me was I had brain tumors, but no disease in my body. While that is great for not having to deal with more tumors, it makes getting into a clinical trial even harder. I don't know if that's your son's case. But for me it was. S0ometimes they need two tumors in the body, one to biopsy at the beginning of the trial and the other to measure without having being disturbed by a biopsy. But no tumor in the body meant no clinical trial for me, no matter that my brain had been treated and was stable.

– Kyle

The other frustrating thing for me was I had brain tumors, but no disease in my body. While that is great for not having to deal with more tumors, it makes getting into a clinical trial even harder. I don't know if that's your son's case. But for me it was. S0ometimes they need two tumors in the body, one to biopsy at the beginning of the trial and the other to measure without having being disturbed by a biopsy. But no tumor in the body meant no clinical trial for me, no matter that my brain had been treated and was stable.

– Kyle

Hi,

This is weird. First off, this is my first time posting anything. I wish I'd started 2 years ago when this disease reared it's ugly head, with 2 of my sons.

In 2015, it came back – fast and bad. My son's name is Arthur, too. In March they found tumors on the shoulder joint, which was the initial cancersite, on his spine, and 3 spots in his brain. He drove to UCCC to get a 2nd opinion, but while he was there, one of the tumors in his brain hemorraged and he had to have emergency brain surgury, preformed bby the neuro-oncologist Dr. Lesniak. Also there eas Dr. Gajewski, who is now his oncologist. He went on Braf iinhinitors for 4 weeks to reduce the tumors, because the spine (now several spots causing lots of pain) and the tumors did shrink, significantly. BUT THE MEDICINE DID NOT CROSS THE BRAIN BARRIER, and the MRI in june showed 3 spots (this was befor Tanifar and the other BRAF inhibitor.) Dr. Gajewski wanted another MRI to use as a baseline before starting him on Ketruda. We were so excited, because the scan showed significant reduction., and the tumor in his liver was gone. So we expected good results for the baseline MRI, but it was devestating. He had 'multiple lesions', which was actually so many we couldn't even count them. When we got back to Rckford, that's when we actually saw the MRI. Arthur did not come in (he was getting fluids, anti-nausea meds and steroids, because he was alredy in decline.) He had to do another round of radiation just to buy him some time. He is getting more radiation than the safe limit, but there was no alternative.His decline was so rapid it was indescribable. But I'll try: loss of balance, weakness of right side with his foot dragging, headaches, vommiting, cognitive decline (he was so slow in everything, he couldn't figure anything out – i.e. he would cap the water bottle, uncap it, try to drink from the cap…) and memory loss, dementia. In 1 WEEK!

After only the 1st radiation treatment he could walk better, the steroids help with the nausea and fatigue. Our Rockford Drs. called these treatments 'comfort measures" and suggested Hospice. I asked Dr Gyjewski about trials, but he said there weren't any.

Now we are weening him off the steroids so we can go back to Chicago for a second infusion of Ketruda. 

Who is Dr. Luke? I wrote a letter to Dr. Lesniak  asking about clinical trials on Aug 5, and I missed him by one day, he is out until the 25th or something. Here is the letter:

I guess it won't let me paste, that's weird.

I just thought it Bizarre that the 1st time I go on this forum and there is an Arthur that sees Dr Gajewski.

Do you know of any trials anywhere?

SarahA (Arthur's mom. (he's 24, btw)

Hi,

This is weird. First off, this is my first time posting anything. I wish I'd started 2 years ago when this disease reared it's ugly head, with 2 of my sons.

In 2015, it came back – fast and bad. My son's name is Arthur, too. In March they found tumors on the shoulder joint, which was the initial cancersite, on his spine, and 3 spots in his brain. He drove to UCCC to get a 2nd opinion, but while he was there, one of the tumors in his brain hemorraged and he had to have emergency brain surgury, preformed bby the neuro-oncologist Dr. Lesniak. Also there eas Dr. Gajewski, who is now his oncologist. He went on Braf iinhinitors for 4 weeks to reduce the tumors, because the spine (now several spots causing lots of pain) and the tumors did shrink, significantly. BUT THE MEDICINE DID NOT CROSS THE BRAIN BARRIER, and the MRI in june showed 3 spots (this was befor Tanifar and the other BRAF inhibitor.) Dr. Gajewski wanted another MRI to use as a baseline before starting him on Ketruda. We were so excited, because the scan showed significant reduction., and the tumor in his liver was gone. So we expected good results for the baseline MRI, but it was devestating. He had 'multiple lesions', which was actually so many we couldn't even count them. When we got back to Rckford, that's when we actually saw the MRI. Arthur did not come in (he was getting fluids, anti-nausea meds and steroids, because he was alredy in decline.) He had to do another round of radiation just to buy him some time. He is getting more radiation than the safe limit, but there was no alternative.His decline was so rapid it was indescribable. But I'll try: loss of balance, weakness of right side with his foot dragging, headaches, vommiting, cognitive decline (he was so slow in everything, he couldn't figure anything out – i.e. he would cap the water bottle, uncap it, try to drink from the cap…) and memory loss, dementia. In 1 WEEK!

After only the 1st radiation treatment he could walk better, the steroids help with the nausea and fatigue. Our Rockford Drs. called these treatments 'comfort measures" and suggested Hospice. I asked Dr Gyjewski about trials, but he said there weren't any.

Now we are weening him off the steroids so we can go back to Chicago for a second infusion of Ketruda. 

Who is Dr. Luke? I wrote a letter to Dr. Lesniak  asking about clinical trials on Aug 5, and I missed him by one day, he is out until the 25th or something. Here is the letter:

I guess it won't let me paste, that's weird.

I just thought it Bizarre that the 1st time I go on this forum and there is an Arthur that sees Dr Gajewski.

Do you know of any trials anywhere?

SarahA (Arthur's mom. (he's 24, btw)