› Forums › General Melanoma Community › CSF Flow Test
- This topic has 24 replies, 3 voices, and was last updated 8 years, 8 months ago by
adriana cooper.
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- September 27, 2016 at 5:03 am
Adriana has surgery in the AM to place her ommaya and is scheduled to start Depocyt on Friday then every 2 weeks. She has not been scheduled for a flow test. I have been doing quite a bit of research and read that it is an important step and most every post I read from folks undergoing IT therapy have mentioned this step. Should I be concerned that it has not been scheduled. I understand the entire process takes 24hrs. As far as I can tell her Neuro-oncologist is quite experienced in IT therapy and has run trials using it (sadly none for melanoma) https://clinicaltrials.gov/ct2/show/NCT00992602. I would be devastated if something bad were to happen because a step got missed. I think the Dr.s get tired of my asking questions and researching but as with us all, our loved ones come first.
We are trying to stay optimistic about the Depocyt working for melanoma given it is her only current option, although any instance of melanoma patients using IT chemo therapies have passed within a few months. We will continue to investigate IT IL-2 options. Adding TIL would not me an option as no tumor has been preserved for such and there are none currently available as the BRAF worked on them? but sadly allowed the brain tumor to occur.
Thanks for any advice.
Would love to hear from any one with first hand experience with leptomentingeal disease (good or bad.)
Hoping for the best but very worried, Rob
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- September 27, 2016 at 12:31 pm
Rob,
i have leptomeningal mets as well (also have had a resected brain met, resected lymph nodes and both SRS radiation, and other radiation to lymph basin)and am being treated currently with the Ipi/Nivo combo (2 treatments in, so very new to it) I'm stable at this time symptomatically and hoping for the best from the combo just playing the waiting game for the immunotherapy to see if I get a response. l appreciate these posts and wish you all the best. I don't have anything to add to this specific discussion right now about the ommaya and CSF, but am meeting with my Melanoma doc Dr. Patrick Ott at Dana Farber in Boston to discuss next steps in the event that the Ipi/Nivo combo doesn't work on Thursday. I will post something Thursday/Friday based on our discussion and maybe I can come out of the meeting with something that can help both of us and others. I'll be asking about intrathecal approaches, trial stuff, IL-2, TIL, whatever I can think of. Probably the topics you've covered. Will be interesting to see what he has to say and I'll post anything I get out of it.
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- September 27, 2016 at 12:31 pm
Rob,
i have leptomeningal mets as well (also have had a resected brain met, resected lymph nodes and both SRS radiation, and other radiation to lymph basin)and am being treated currently with the Ipi/Nivo combo (2 treatments in, so very new to it) I'm stable at this time symptomatically and hoping for the best from the combo just playing the waiting game for the immunotherapy to see if I get a response. l appreciate these posts and wish you all the best. I don't have anything to add to this specific discussion right now about the ommaya and CSF, but am meeting with my Melanoma doc Dr. Patrick Ott at Dana Farber in Boston to discuss next steps in the event that the Ipi/Nivo combo doesn't work on Thursday. I will post something Thursday/Friday based on our discussion and maybe I can come out of the meeting with something that can help both of us and others. I'll be asking about intrathecal approaches, trial stuff, IL-2, TIL, whatever I can think of. Probably the topics you've covered. Will be interesting to see what he has to say and I'll post anything I get out of it.
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- September 28, 2016 at 7:47 pm
Andrew, Thanks for your reply. I look forward to sharing information with you. Rob
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- September 28, 2016 at 7:47 pm
Andrew, Thanks for your reply. I look forward to sharing information with you. Rob
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- September 28, 2016 at 7:47 pm
Andrew, Thanks for your reply. I look forward to sharing information with you. Rob
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- October 1, 2016 at 12:31 pm
Rob,
So as I mentioned, I also have leptomeningal disease like your wife with spine involvement and history of brain tumor and I had a discussion with the melanoma team at Dana Farber to discuss current treatments and my options in the event that the Ipi-Nivo treatment I am on is not effective. I don't have too much concrete to tell you that came out of that meeting unfortunately. I'm still in the position where I will still have a couple months anyway to evaluate whether my treatment is working before I'd be inclined to move on to something unless (depending on symptoms and how they go of course). Trial options are of course limited with CNS, lmd or brain involvement, but they pointed to MD Anderson as the go to place probably doing more for our populations than anything. The docs didnt point to any particular style of treatment and say definitively that this or that treatment is definitely the one I'd point you too if we wanted you to switch tomorrow. Little nerve-wracking not knowing for sure what my next step would be, but I appreciated the frank conversation I had and also the openness to say that today's best alternative might not be the best alternative in two months. I will keep you in my thoughts and if I hear anything that I think might help, I will post. All the best for now, and remember we can be just one treatment away from our cure, we just have to find the right one.
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- October 1, 2016 at 12:31 pm
Rob,
So as I mentioned, I also have leptomeningal disease like your wife with spine involvement and history of brain tumor and I had a discussion with the melanoma team at Dana Farber to discuss current treatments and my options in the event that the Ipi-Nivo treatment I am on is not effective. I don't have too much concrete to tell you that came out of that meeting unfortunately. I'm still in the position where I will still have a couple months anyway to evaluate whether my treatment is working before I'd be inclined to move on to something unless (depending on symptoms and how they go of course). Trial options are of course limited with CNS, lmd or brain involvement, but they pointed to MD Anderson as the go to place probably doing more for our populations than anything. The docs didnt point to any particular style of treatment and say definitively that this or that treatment is definitely the one I'd point you too if we wanted you to switch tomorrow. Little nerve-wracking not knowing for sure what my next step would be, but I appreciated the frank conversation I had and also the openness to say that today's best alternative might not be the best alternative in two months. I will keep you in my thoughts and if I hear anything that I think might help, I will post. All the best for now, and remember we can be just one treatment away from our cure, we just have to find the right one.
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- October 2, 2016 at 8:10 pm
Thanks Andrew, Next week I will post a separate thread on Adriana's Depocyt experience (which has proved difficult at best thus far) as well as what the oncologist starts her on to take care of the other side of things.
Rob
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- October 2, 2016 at 8:10 pm
Thanks Andrew, Next week I will post a separate thread on Adriana's Depocyt experience (which has proved difficult at best thus far) as well as what the oncologist starts her on to take care of the other side of things.
Rob
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- October 2, 2016 at 8:10 pm
Thanks Andrew, Next week I will post a separate thread on Adriana's Depocyt experience (which has proved difficult at best thus far) as well as what the oncologist starts her on to take care of the other side of things.
Rob
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- October 1, 2016 at 12:31 pm
Rob,
So as I mentioned, I also have leptomeningal disease like your wife with spine involvement and history of brain tumor and I had a discussion with the melanoma team at Dana Farber to discuss current treatments and my options in the event that the Ipi-Nivo treatment I am on is not effective. I don't have too much concrete to tell you that came out of that meeting unfortunately. I'm still in the position where I will still have a couple months anyway to evaluate whether my treatment is working before I'd be inclined to move on to something unless (depending on symptoms and how they go of course). Trial options are of course limited with CNS, lmd or brain involvement, but they pointed to MD Anderson as the go to place probably doing more for our populations than anything. The docs didnt point to any particular style of treatment and say definitively that this or that treatment is definitely the one I'd point you too if we wanted you to switch tomorrow. Little nerve-wracking not knowing for sure what my next step would be, but I appreciated the frank conversation I had and also the openness to say that today's best alternative might not be the best alternative in two months. I will keep you in my thoughts and if I hear anything that I think might help, I will post. All the best for now, and remember we can be just one treatment away from our cure, we just have to find the right one.
-
- September 27, 2016 at 12:31 pm
Rob,
i have leptomeningal mets as well (also have had a resected brain met, resected lymph nodes and both SRS radiation, and other radiation to lymph basin)and am being treated currently with the Ipi/Nivo combo (2 treatments in, so very new to it) I'm stable at this time symptomatically and hoping for the best from the combo just playing the waiting game for the immunotherapy to see if I get a response. l appreciate these posts and wish you all the best. I don't have anything to add to this specific discussion right now about the ommaya and CSF, but am meeting with my Melanoma doc Dr. Patrick Ott at Dana Farber in Boston to discuss next steps in the event that the Ipi/Nivo combo doesn't work on Thursday. I will post something Thursday/Friday based on our discussion and maybe I can come out of the meeting with something that can help both of us and others. I'll be asking about intrathecal approaches, trial stuff, IL-2, TIL, whatever I can think of. Probably the topics you've covered. Will be interesting to see what he has to say and I'll post anything I get out of it.
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- September 28, 2016 at 9:49 am
My husband had an ommya place two different times the original and he developed hydrocephalus and they placed a new ommya with a shunt and each time a flow test was done.
Good luck and God bless
Samantha
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- September 28, 2016 at 8:25 pm
Samantha, I was hoping to hear from you. I have read as many of your posts as I could find, thanks for sharing. Ommaya placement went well and Adriana now has a new haircut 🙂 after just getting it grown back post BRAF. She is now looking forward to finding a new half head hair style with a pattern in the shaved part and converting her Seahawk colors to some new ones. Yesterday the surgical resident said that because she doesn't have any known issues or any MRI findings concerning CSF flow restriction is likely why CSF flow test hasn't been ordered by the neuro-oncologist. So I guess we go with that.
Sadly I find that most of the LMD patients posted about here, are no longer with us. How is your husband doing, well I hope. Is he still on IT IL-2 at MDA? How often now? Was he ever offered IT chemo or was that ever a consideration or discussed. Any additional advice you can provide is appreciated.
Best wishes, Rob
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- September 29, 2016 at 11:07 am
Hi Rob
Sadly today I will lay my sweetie to rest. He had passed away at MDAnderson on 9-24. His LMD was under control and he had started the TIL trail for progression in his liver,lungs and lymph nodes. They did a CT of the chest and abdomen on Sunday and all was stable. The third day in his blood oxygen were low and blood pressure was low, they did a chest X-ray that showed possible aspiration gave him lasiks then they took him to the ICU where he passed away. They asked if I wanted an autopsy I said no more cuts.
Mickey's LMD was in his spine and they did do radiation there so that maybe way he had to have the flow test both times. He did the intrathecal with the IL2 but had to stop to get on this trial. We were going every eight weeks. In 2013 Mickey developed hydrocephalus (which is a side effect if intrathecal) that was when they put the shunt in. he had had WBR and two gamma knifes done and by the end of 2015 his brain was getting tired. He had the intrathecal done in 12-15 and by the time I got him home he could not make his legs move so we went back down there nothing found he got better we went home then the next one after being home an hour he couldn't talk we went to the ER here at home they said it was a seizure. When we went back for the next one Mickey progression had gotten worse so they wanted to try to get him in this trial.
I keep coming back here for the LMD Warriors, I know he would say he would do this treatment all over again. It was bumpy but I would go on the journey again knowing what I know.
Sorry for the rambling. I did email you but may have went to junk. My email is [email protected] I will answer any question if I can.
Good luck and God bless
Samantha
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- September 29, 2016 at 11:07 am
Hi Rob
Sadly today I will lay my sweetie to rest. He had passed away at MDAnderson on 9-24. His LMD was under control and he had started the TIL trail for progression in his liver,lungs and lymph nodes. They did a CT of the chest and abdomen on Sunday and all was stable. The third day in his blood oxygen were low and blood pressure was low, they did a chest X-ray that showed possible aspiration gave him lasiks then they took him to the ICU where he passed away. They asked if I wanted an autopsy I said no more cuts.
Mickey's LMD was in his spine and they did do radiation there so that maybe way he had to have the flow test both times. He did the intrathecal with the IL2 but had to stop to get on this trial. We were going every eight weeks. In 2013 Mickey developed hydrocephalus (which is a side effect if intrathecal) that was when they put the shunt in. he had had WBR and two gamma knifes done and by the end of 2015 his brain was getting tired. He had the intrathecal done in 12-15 and by the time I got him home he could not make his legs move so we went back down there nothing found he got better we went home then the next one after being home an hour he couldn't talk we went to the ER here at home they said it was a seizure. When we went back for the next one Mickey progression had gotten worse so they wanted to try to get him in this trial.
I keep coming back here for the LMD Warriors, I know he would say he would do this treatment all over again. It was bumpy but I would go on the journey again knowing what I know.
Sorry for the rambling. I did email you but may have went to junk. My email is [email protected] I will answer any question if I can.
Good luck and God bless
Samantha
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- September 30, 2016 at 6:56 am
Samantha, I am so sorry to hear this. My heart goes out to you as you are going through this. I am ever so greatful that you took the time to reply to my post as you were going through this. You and Mickey are truly giving people, helping others through the years, as you have been going through all the ups and downs of your own. Thank you for the info. Please take care of yourself and know that you are in my daily thoughts.
Rob
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- September 30, 2016 at 6:56 am
Samantha, I am so sorry to hear this. My heart goes out to you as you are going through this. I am ever so greatful that you took the time to reply to my post as you were going through this. You and Mickey are truly giving people, helping others through the years, as you have been going through all the ups and downs of your own. Thank you for the info. Please take care of yourself and know that you are in my daily thoughts.
Rob
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- September 30, 2016 at 6:56 am
Samantha, I am so sorry to hear this. My heart goes out to you as you are going through this. I am ever so greatful that you took the time to reply to my post as you were going through this. You and Mickey are truly giving people, helping others through the years, as you have been going through all the ups and downs of your own. Thank you for the info. Please take care of yourself and know that you are in my daily thoughts.
Rob
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- September 29, 2016 at 11:07 am
Hi Rob
Sadly today I will lay my sweetie to rest. He had passed away at MDAnderson on 9-24. His LMD was under control and he had started the TIL trail for progression in his liver,lungs and lymph nodes. They did a CT of the chest and abdomen on Sunday and all was stable. The third day in his blood oxygen were low and blood pressure was low, they did a chest X-ray that showed possible aspiration gave him lasiks then they took him to the ICU where he passed away. They asked if I wanted an autopsy I said no more cuts.
Mickey's LMD was in his spine and they did do radiation there so that maybe way he had to have the flow test both times. He did the intrathecal with the IL2 but had to stop to get on this trial. We were going every eight weeks. In 2013 Mickey developed hydrocephalus (which is a side effect if intrathecal) that was when they put the shunt in. he had had WBR and two gamma knifes done and by the end of 2015 his brain was getting tired. He had the intrathecal done in 12-15 and by the time I got him home he could not make his legs move so we went back down there nothing found he got better we went home then the next one after being home an hour he couldn't talk we went to the ER here at home they said it was a seizure. When we went back for the next one Mickey progression had gotten worse so they wanted to try to get him in this trial.
I keep coming back here for the LMD Warriors, I know he would say he would do this treatment all over again. It was bumpy but I would go on the journey again knowing what I know.
Sorry for the rambling. I did email you but may have went to junk. My email is [email protected] I will answer any question if I can.
Good luck and God bless
Samantha
-
- September 28, 2016 at 8:25 pm
Samantha, I was hoping to hear from you. I have read as many of your posts as I could find, thanks for sharing. Ommaya placement went well and Adriana now has a new haircut 🙂 after just getting it grown back post BRAF. She is now looking forward to finding a new half head hair style with a pattern in the shaved part and converting her Seahawk colors to some new ones. Yesterday the surgical resident said that because she doesn't have any known issues or any MRI findings concerning CSF flow restriction is likely why CSF flow test hasn't been ordered by the neuro-oncologist. So I guess we go with that.
Sadly I find that most of the LMD patients posted about here, are no longer with us. How is your husband doing, well I hope. Is he still on IT IL-2 at MDA? How often now? Was he ever offered IT chemo or was that ever a consideration or discussed. Any additional advice you can provide is appreciated.
Best wishes, Rob
-
- September 28, 2016 at 8:25 pm
Samantha, I was hoping to hear from you. I have read as many of your posts as I could find, thanks for sharing. Ommaya placement went well and Adriana now has a new haircut 🙂 after just getting it grown back post BRAF. She is now looking forward to finding a new half head hair style with a pattern in the shaved part and converting her Seahawk colors to some new ones. Yesterday the surgical resident said that because she doesn't have any known issues or any MRI findings concerning CSF flow restriction is likely why CSF flow test hasn't been ordered by the neuro-oncologist. So I guess we go with that.
Sadly I find that most of the LMD patients posted about here, are no longer with us. How is your husband doing, well I hope. Is he still on IT IL-2 at MDA? How often now? Was he ever offered IT chemo or was that ever a consideration or discussed. Any additional advice you can provide is appreciated.
Best wishes, Rob
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