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- This topic has 24 replies, 6 voices, and was last updated 7 years, 5 months ago by
Mikers.
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- November 4, 2016 at 6:04 am
After discussion with and upon the advice of the neuro-oncologist (whom was in consultation and in agreement with her melanoma oncologist, as we understood to be at the time) and consultation with the neuro-surgon, Adriana had an ommaya placed with the plan to start intrathecal Depocyt treatments every two weeks. We briefly discussed with him the IT IL-2 going on in TX which he described as being experimental or in trial, which I found to be uninformed. I also brought up the subject of melanoma being different than other cancers and not being particularly chemo-sensitive and discussed Depocyt along with the other it-chemo options. I also inquired if he had followed this plan with other melanoma patients, he said he had and I did not press further. In hindsight I wish I had inquired about how many patients, how long ago and their specific outcomes. I found my self too trusting in the light of his expertise (or intimidated by it.) Adriana's oncologist office actually called to make an appointment with her to discuss her situation but it was for the afternoon on the day of surgery and he opted to defer to the following week so that she would not be under the influence of anesthesia and was fully aware of the discussion. Again in hindsight I still don't understand why the melanoma onologist didn't cancel the surgical plans until after he had the opportunity to talk to us. (During our most recent appointment the melanoma oncologist said, as I understood, that the neuro-oncologist likely doesn't know a whole lot about melanoma as he likely doesn't see that many melanoma patients.)
On September 27 Adriana had her ommaya placed without particular incident and recovered over the next few days although she continued to have substantial facial and sciatic pain as she has had for some time. On September 30 Adriana had her first Depocyt treatment. This day was also the first time ever that I had to use the wheelchair to get her into and out of the hospital due to the continued pain she was in, heartbreaking for me and frustrating for us both. Her pain meds were increased and the treatment was administered without incidence although I must say it is slightly disturbing seeing fluid being sucked out and put in through the top of your loved ones head. Although side effects of chemical meningitis were described no instructions as to when to call in or take action were given. By late that night neck pain and headache had set in along with her other pain, and fevers starting by noon of October 1. That evening the neck pain was severe and temperature close to 102 much of the time. We increased her Dex at the recommendation of the on call/nurse/neurology resident (middle of the night on a weekend of course) and advised to go to ER if temp stayed above 102. Pain and continued fevers through October 2 and most of October 3. The fevers finally subsided during that night.
On October 4 while still in considerable pain (again in the wheelchair) we visited the oncologist who advised Adriana to cancel further Depocyt treatments as it is “ineffective for melanoma” and will only cause further discomfort and that we will now be focusing on quality of life treatments as there is no cure for LMD. Essentially she had the surgery and treatment for no reason :>(( He confirmed that our research of prognosis of 4-6 weeks un-treated and 6-8 months for treated patients was in fact correct. He also theorized that Adriana has likely had leptomeningeal disease since February 2015 but mis-diagnosed as the symptoms were mistaken to be unusually severe side effects of ipilimumab and masked by the steroids and BRAFi she was switched to at the time. He advised that she see her family (which was already planned) and get affairs in order – the end of life discussion. Although he mentioned hospice he referred us for an appointment with palliative care. He restarted her on Taf/Mek combo and continued Dex to control fevers (a side effect for her during her previous course of Taf/Mek) in hopes of some improvement. If improvement is seen then possible return to Pembro in order to conserve BRAFi for extended use. In my hope for some optimism and in the light that she has had LMD since 2/2015 why not repeat the sequence (or some combination) of BRAFi—Gamma Knife as needed—Pembro– that has gotten her this far.
Within 5 days of starting Taf/Mek + Dex all of Adriana's pain was gone including neck-head-face and the horrible sciatic pain (lastly diagnosed via MRI as Tarlov cysts) that has plagued her for months. Although she has double vision (hope to see a neuro-opthomologist for some help soon, sooo many specialists) and continued facial palsy on the right and more recently facial muscle atrophy on the right. Our 10 day trip to Ohio to see her family and explain the circumstances went well and was actually relaxing for her. We are now planning a late December commitment ceremony with our family as we find that we can not get married without risking her health insurance, even though my income is very small. I actually asked her to marry me almost 10 years ago and this is long overdue and not something I want to let go undone.
This week's visit with the oncologist felt more down and less optimistic?? on his part. We came to the realization just how rare this is as she is the only melanoma LMD patient at SCCA. Adriana is doing well and he started her to taper her off of Dex over the next month in hopes of replacing Taf/Mek with Pembro. He does not subscribe to use of immunotherapy while on steroids as he feels they counteract each other. I hope to persuade him otherwise, if necessary, with some of the evidence Celeste has provided here in the past.
Although IT-IL2 in TX is not currently an option I theorize with the success of systemic Pembro/Nivo and the increase in incidence of LMD due to longer survivals that the newer immunotherapies will be used intertheacally in the future. Although I am uneducated in any of this it would seem to be a natural evolution.
Although things seem dire and the situation some times takes over our emotions, we continue to try and live our lives and get things in order. We strive to have as many experiences, love each other and our families and create as many memories as possible.
Please ask questions of your providers, don't be afraid to offend them, slow things down if you need to.
Thanks for reading. I hope something here may be of use to someone in the future.
Andrew1725, I hope you are doing well.
Best wishes to you all.
Feel free to email [email protected]
Rob
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- November 4, 2016 at 9:15 am
Rob,
Thank you so much For these and other updates and I apologize for any typo errors or the like as I am working off of of one eye due to symptoms of the the LMD. I am I inspired by your continued fight with Adriana and despite all your obvious frustrations and roadblocks and I think you guys are really doing it right and striking a great balance between palliative care and doing what has worked in the past for a cure.
As for for me, I continue with the Ipi/Nivo combo with my 4th of those treatments to come shortly and scans to follow after to try to evaluate the effectiveness. I'm on dexamethasone to protect me from swelling and Keppra for anti-Seizur e. My main fight continues to be pain from spinal mets, but I'm doing mostly well in that regard with narcotic pain meds. Also had a procedure about 3 weeks ago to drill a burr hole in skull to relieve pressure in brain which neurosurgeon was very pleased with results. So happy that you guys ar e battling hard and winning some victories.
All th best, Andrew
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- November 4, 2016 at 9:15 am
Rob,
Thank you so much For these and other updates and I apologize for any typo errors or the like as I am working off of of one eye due to symptoms of the the LMD. I am I inspired by your continued fight with Adriana and despite all your obvious frustrations and roadblocks and I think you guys are really doing it right and striking a great balance between palliative care and doing what has worked in the past for a cure.
As for for me, I continue with the Ipi/Nivo combo with my 4th of those treatments to come shortly and scans to follow after to try to evaluate the effectiveness. I'm on dexamethasone to protect me from swelling and Keppra for anti-Seizur e. My main fight continues to be pain from spinal mets, but I'm doing mostly well in that regard with narcotic pain meds. Also had a procedure about 3 weeks ago to drill a burr hole in skull to relieve pressure in brain which neurosurgeon was very pleased with results. So happy that you guys ar e battling hard and winning some victories.
All th best, Andrew
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- November 4, 2016 at 9:15 am
Rob,
Thank you so much For these and other updates and I apologize for any typo errors or the like as I am working off of of one eye due to symptoms of the the LMD. I am I inspired by your continued fight with Adriana and despite all your obvious frustrations and roadblocks and I think you guys are really doing it right and striking a great balance between palliative care and doing what has worked in the past for a cure.
As for for me, I continue with the Ipi/Nivo combo with my 4th of those treatments to come shortly and scans to follow after to try to evaluate the effectiveness. I'm on dexamethasone to protect me from swelling and Keppra for anti-Seizur e. My main fight continues to be pain from spinal mets, but I'm doing mostly well in that regard with narcotic pain meds. Also had a procedure about 3 weeks ago to drill a burr hole in skull to relieve pressure in brain which neurosurgeon was very pleased with results. So happy that you guys ar e battling hard and winning some victories.
All th best, Andrew
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- November 5, 2016 at 6:46 pm
Dear Rob (and Adriana),
Thank you for sharing what I know must be a hard story to write. You have both been so strong and such a source of inspiration for all of us looking on. Your difficulties teach us all. Your love is stronger than the bonds of the best marriage. Your wisdom demonstrates the balance between fighting hard and seeking peace. I hope Adriana continues to feel better and does in fact, get to change over to Pembro. Holding you both in my heart. Yours, celeste
PS Here is this report (current through last week and written by some Melanoma Big Dogs) if you need it: http://www.uptodate.com/contents/toxicities-associated-with-checkpoint-inhibitor-immunotherapy#H91786710
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- November 5, 2016 at 6:46 pm
Dear Rob (and Adriana),
Thank you for sharing what I know must be a hard story to write. You have both been so strong and such a source of inspiration for all of us looking on. Your difficulties teach us all. Your love is stronger than the bonds of the best marriage. Your wisdom demonstrates the balance between fighting hard and seeking peace. I hope Adriana continues to feel better and does in fact, get to change over to Pembro. Holding you both in my heart. Yours, celeste
PS Here is this report (current through last week and written by some Melanoma Big Dogs) if you need it: http://www.uptodate.com/contents/toxicities-associated-with-checkpoint-inhibitor-immunotherapy#H91786710
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- November 5, 2016 at 6:46 pm
Dear Rob (and Adriana),
Thank you for sharing what I know must be a hard story to write. You have both been so strong and such a source of inspiration for all of us looking on. Your difficulties teach us all. Your love is stronger than the bonds of the best marriage. Your wisdom demonstrates the balance between fighting hard and seeking peace. I hope Adriana continues to feel better and does in fact, get to change over to Pembro. Holding you both in my heart. Yours, celeste
PS Here is this report (current through last week and written by some Melanoma Big Dogs) if you need it: http://www.uptodate.com/contents/toxicities-associated-with-checkpoint-inhibitor-immunotherapy#H91786710
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- November 12, 2016 at 10:14 pm
Dear Rob,
your situation is quite similar to mine.
Sorry I didnt' understand completely why don't you try intrathecal IL-2? They do it well in MD Anderson (prof. Glitza).
Also is Adriana Braf positive? Why not to rechallenge braf+mek?
Do you know any clinical trials which you can apply with LMD?Best wishes, Mike
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- November 12, 2016 at 10:14 pm
Dear Rob,
your situation is quite similar to mine.
Sorry I didnt' understand completely why don't you try intrathecal IL-2? They do it well in MD Anderson (prof. Glitza).
Also is Adriana Braf positive? Why not to rechallenge braf+mek?
Do you know any clinical trials which you can apply with LMD?Best wishes, Mike
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- November 12, 2016 at 10:14 pm
Dear Rob,
your situation is quite similar to mine.
Sorry I didnt' understand completely why don't you try intrathecal IL-2? They do it well in MD Anderson (prof. Glitza).
Also is Adriana Braf positive? Why not to rechallenge braf+mek?
Do you know any clinical trials which you can apply with LMD?Best wishes, Mike
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- November 14, 2016 at 8:30 pm
Thanks all for the comments and well wishes.
Mikers, Adriana's son just moved 2500 miles to live with us last year and is a senior in HS this year and disrupting him (her kids have been through more than their share of disruption with their father over the last 10 years) with a move to Texas at this time is not an option. Although I know that they have had success at MDA my research tells me that it is far from a guarantee as I have read of many people that have gone on to start that treatment (which is intense) and have still died within a few months. So the main decision comes down to quality of life. In addition we have very little financial resources and Adriana is on Medicare and Medicaid and( although direct inquiries have not been made) we doubt that we could even remotely afford such a move or pay for the 20% once the Medicaid drops out (unless it would some how transfer to TX) and the upcoming change in the ACA makes things even more tenuous.
On the positive side Adriana did restart Taf/Mek successfully and all of her pain was gone within 5 days. The current plan is for her to restart Keytruda in a couple of weeks in hope of preserving BRAFi for further or extended use.
Although IT IL-2 and trials are not off the table, moving is just not an option at this time.
I must say I don't really completely understand why IT IL-2 is not offered at other sites around the country given it seems to be the only option with "documented" success.
Best wishes to all
Hoping for the best,
Rob
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- November 14, 2016 at 8:30 pm
Thanks all for the comments and well wishes.
Mikers, Adriana's son just moved 2500 miles to live with us last year and is a senior in HS this year and disrupting him (her kids have been through more than their share of disruption with their father over the last 10 years) with a move to Texas at this time is not an option. Although I know that they have had success at MDA my research tells me that it is far from a guarantee as I have read of many people that have gone on to start that treatment (which is intense) and have still died within a few months. So the main decision comes down to quality of life. In addition we have very little financial resources and Adriana is on Medicare and Medicaid and( although direct inquiries have not been made) we doubt that we could even remotely afford such a move or pay for the 20% once the Medicaid drops out (unless it would some how transfer to TX) and the upcoming change in the ACA makes things even more tenuous.
On the positive side Adriana did restart Taf/Mek successfully and all of her pain was gone within 5 days. The current plan is for her to restart Keytruda in a couple of weeks in hope of preserving BRAFi for further or extended use.
Although IT IL-2 and trials are not off the table, moving is just not an option at this time.
I must say I don't really completely understand why IT IL-2 is not offered at other sites around the country given it seems to be the only option with "documented" success.
Best wishes to all
Hoping for the best,
Rob
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- December 9, 2016 at 6:19 pm
Hey, Rob,
I was going to contact you via email but seems that you didn't get mine message. Would you be able to mail me to the [email protected]? Thank you!
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- December 9, 2016 at 6:19 pm
Hey, Rob,
I was going to contact you via email but seems that you didn't get mine message. Would you be able to mail me to the [email protected]? Thank you!
-
- December 9, 2016 at 6:19 pm
Hey, Rob,
I was going to contact you via email but seems that you didn't get mine message. Would you be able to mail me to the [email protected]? Thank you!
-
- November 14, 2016 at 8:30 pm
Thanks all for the comments and well wishes.
Mikers, Adriana's son just moved 2500 miles to live with us last year and is a senior in HS this year and disrupting him (her kids have been through more than their share of disruption with their father over the last 10 years) with a move to Texas at this time is not an option. Although I know that they have had success at MDA my research tells me that it is far from a guarantee as I have read of many people that have gone on to start that treatment (which is intense) and have still died within a few months. So the main decision comes down to quality of life. In addition we have very little financial resources and Adriana is on Medicare and Medicaid and( although direct inquiries have not been made) we doubt that we could even remotely afford such a move or pay for the 20% once the Medicaid drops out (unless it would some how transfer to TX) and the upcoming change in the ACA makes things even more tenuous.
On the positive side Adriana did restart Taf/Mek successfully and all of her pain was gone within 5 days. The current plan is for her to restart Keytruda in a couple of weeks in hope of preserving BRAFi for further or extended use.
Although IT IL-2 and trials are not off the table, moving is just not an option at this time.
I must say I don't really completely understand why IT IL-2 is not offered at other sites around the country given it seems to be the only option with "documented" success.
Best wishes to all
Hoping for the best,
Rob
Tagged: cutaneous melanoma
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