› Forums › General Melanoma Community › Please read..I am scared…
- This topic has 45 replies, 6 voices, and was last updated 9 years, 2 months ago by
snow white.
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- January 6, 2017 at 9:15 pm
Hi All,
Everything has been humming along. with Dad, in fact he was told that he can drive short distances.
Yesterday, he went for an MRI and then met with his neuro surgeon. They seemed positive when they met with him. My Mom called me this morning and said she needed to talk. She had been reading Dads latest report and she was very scared. This is what the report says:
FINDINGS: The previosly seen numerous lesions with intrinsic high signal intensity and some contrast enhancement predom inating in the high subcortical bihemispheric regions are again identified, as are several small "dot" peel foci in the left mid frontal convexity.
There is no obvious new disease, progression of size in the pre existing lesions, or other acute pathology.
CONCLUSION:
Stable short interval appearance of multiple metastatic foci describled on the December 2 study, and one month later today. The presence of several tiny peel foci suggests the possibility of leptomeningeal disease, cervical, thoracolumbar follow up studies can be done as indicated clinically.
What now? The Leptomeningeal disease scares the crap out of me. Please tell me there is hope here.
Jen
- Replies
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- January 6, 2017 at 10:18 pm
I understand the fear, Jen. I am sorry that there is more worry. Radiology reports are limited…though they are the best first pass we have at figuring out what is within. If it were me….I'd rather know what I was dealing with for sure and push for a lumbar puncture (spinal tap) so that spinal fluid can be analyzed for the presence of melanoma cells and you can have a deffinitive diagnosis…one way or the other. Then…you can go from there. Hang on. love, c
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- January 6, 2017 at 10:32 pm
Thank you Celeste. I was on your blog looking at info, its so scary and my Mom is freaking out. I am going to push for a lumbar puncture so that we can know for sure.
XO Jen
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- January 6, 2017 at 10:32 pm
Thank you Celeste. I was on your blog looking at info, its so scary and my Mom is freaking out. I am going to push for a lumbar puncture so that we can know for sure.
XO Jen
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- January 6, 2017 at 10:32 pm
Thank you Celeste. I was on your blog looking at info, its so scary and my Mom is freaking out. I am going to push for a lumbar puncture so that we can know for sure.
XO Jen
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- January 6, 2017 at 10:18 pm
I understand the fear, Jen. I am sorry that there is more worry. Radiology reports are limited…though they are the best first pass we have at figuring out what is within. If it were me….I'd rather know what I was dealing with for sure and push for a lumbar puncture (spinal tap) so that spinal fluid can be analyzed for the presence of melanoma cells and you can have a deffinitive diagnosis…one way or the other. Then…you can go from there. Hang on. love, c
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- January 6, 2017 at 10:18 pm
I understand the fear, Jen. I am sorry that there is more worry. Radiology reports are limited…though they are the best first pass we have at figuring out what is within. If it were me….I'd rather know what I was dealing with for sure and push for a lumbar puncture (spinal tap) so that spinal fluid can be analyzed for the presence of melanoma cells and you can have a deffinitive diagnosis…one way or the other. Then…you can go from there. Hang on. love, c
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- January 6, 2017 at 11:23 pm
Hi Jen,
Deep breath first.
Look for the good- ( and the good bits are the certain ones )
So- No progression seen in known lesions- that is good given Nivo only recently started…
No obvious new lesions- which is great .
Nothing acute-so no calls for panic re diagnostics etc.
The radiographer is identifying possibles and the indications are tiny and uncertain. Your Dad has had a lot of intervention in this area over the last couple of months with the craniotomy and gamma knife procedures that must make disturbances on scan results more likely. I would go with that thought for now and that the nivo is doing its job. Travel in hope if you can – and take comfort from the known positives-like driving being on the menu again. It is hard to deal with all the uncertainties ..but it sounds like your Dad is in a much better place for now than it was feared after the surgery. Wishing your Dad great results from the Nivo and for a continued recovery. Hang on in there for now…and don't let the fear spiral out of control. Keep the deep breathing and distraction techniques going . One day at a time and all that.. You and your Mom are strong and can do this….
Best wishes
Deb
The report has left it to the neuro to decide if further investigations are appropriate- and it doesn't sound like this possibility was raised.
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- January 6, 2017 at 11:45 pm
Oh Deb! You are such a wonderful human. You brought me to tears. Thank you so much for putting things in perspective. i was feeling so positive about everything and then my Mom called me in a panic. The Neuro didn't make a big deal of it at the appointment. My Mom called the Onc. doc (not a Mel specialist) and she said she didn't like what she saw and that is was not good. I am demanding that we switch to a Mel specialist for a second opinion ASAP.
Thank you again. I hope you are doing well.
XO Jen
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- January 7, 2017 at 2:45 pm
Hi Jen,
Doing ok. Peggy's good news about treatment response cheered me up last night.
Been thinking about you and read through the link Rob sent- which explained a lot. Unfortunately even a spinal tap may not clarify the situation as false negatives are common – especially if the original tumour is distant from the site of the tap. In my laymans understanding the melanoma cells may not be evenly mixed through the CSF and so if clinical symptoms point the finger they may repeat the test up to three times in the face of negative results…. with the various risks that entails.
Maybe the pertinent questions are-
What are the pros and cons of further testing or imaging ?
Would early diagnosis and recognition change the treatment plan in any way ?
They might just want to compare findings when the next scan is due as they seem to be monitoring quite frequently….hope they are just hot spots following the surgery and radiation.
Best wishes and an internet hug to you all
Deb
xx
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- January 7, 2017 at 6:44 pm
Thank you Deb. All excellent things to think about and all will be taken into consideration. I was just discussing this with my husband and we both hope to push my Dad (and Mom) to go to MD Anderson for a 3rd opinion, ASAP.
I think of you often and know that you will get through this. Keep fighting!!!!!! All the best!
XO Jen
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- January 7, 2017 at 6:44 pm
Thank you Deb. All excellent things to think about and all will be taken into consideration. I was just discussing this with my husband and we both hope to push my Dad (and Mom) to go to MD Anderson for a 3rd opinion, ASAP.
I think of you often and know that you will get through this. Keep fighting!!!!!! All the best!
XO Jen
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- January 7, 2017 at 6:44 pm
Thank you Deb. All excellent things to think about and all will be taken into consideration. I was just discussing this with my husband and we both hope to push my Dad (and Mom) to go to MD Anderson for a 3rd opinion, ASAP.
I think of you often and know that you will get through this. Keep fighting!!!!!! All the best!
XO Jen
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- January 7, 2017 at 2:45 pm
Hi Jen,
Doing ok. Peggy's good news about treatment response cheered me up last night.
Been thinking about you and read through the link Rob sent- which explained a lot. Unfortunately even a spinal tap may not clarify the situation as false negatives are common – especially if the original tumour is distant from the site of the tap. In my laymans understanding the melanoma cells may not be evenly mixed through the CSF and so if clinical symptoms point the finger they may repeat the test up to three times in the face of negative results…. with the various risks that entails.
Maybe the pertinent questions are-
What are the pros and cons of further testing or imaging ?
Would early diagnosis and recognition change the treatment plan in any way ?
They might just want to compare findings when the next scan is due as they seem to be monitoring quite frequently….hope they are just hot spots following the surgery and radiation.
Best wishes and an internet hug to you all
Deb
xx
-
- January 7, 2017 at 2:45 pm
Hi Jen,
Doing ok. Peggy's good news about treatment response cheered me up last night.
Been thinking about you and read through the link Rob sent- which explained a lot. Unfortunately even a spinal tap may not clarify the situation as false negatives are common – especially if the original tumour is distant from the site of the tap. In my laymans understanding the melanoma cells may not be evenly mixed through the CSF and so if clinical symptoms point the finger they may repeat the test up to three times in the face of negative results…. with the various risks that entails.
Maybe the pertinent questions are-
What are the pros and cons of further testing or imaging ?
Would early diagnosis and recognition change the treatment plan in any way ?
They might just want to compare findings when the next scan is due as they seem to be monitoring quite frequently….hope they are just hot spots following the surgery and radiation.
Best wishes and an internet hug to you all
Deb
xx
-
- January 6, 2017 at 11:45 pm
Oh Deb! You are such a wonderful human. You brought me to tears. Thank you so much for putting things in perspective. i was feeling so positive about everything and then my Mom called me in a panic. The Neuro didn't make a big deal of it at the appointment. My Mom called the Onc. doc (not a Mel specialist) and she said she didn't like what she saw and that is was not good. I am demanding that we switch to a Mel specialist for a second opinion ASAP.
Thank you again. I hope you are doing well.
XO Jen
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- January 6, 2017 at 11:45 pm
Oh Deb! You are such a wonderful human. You brought me to tears. Thank you so much for putting things in perspective. i was feeling so positive about everything and then my Mom called me in a panic. The Neuro didn't make a big deal of it at the appointment. My Mom called the Onc. doc (not a Mel specialist) and she said she didn't like what she saw and that is was not good. I am demanding that we switch to a Mel specialist for a second opinion ASAP.
Thank you again. I hope you are doing well.
XO Jen
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- January 6, 2017 at 11:23 pm
Hi Jen,
Deep breath first.
Look for the good- ( and the good bits are the certain ones )
So- No progression seen in known lesions- that is good given Nivo only recently started…
No obvious new lesions- which is great .
Nothing acute-so no calls for panic re diagnostics etc.
The radiographer is identifying possibles and the indications are tiny and uncertain. Your Dad has had a lot of intervention in this area over the last couple of months with the craniotomy and gamma knife procedures that must make disturbances on scan results more likely. I would go with that thought for now and that the nivo is doing its job. Travel in hope if you can – and take comfort from the known positives-like driving being on the menu again. It is hard to deal with all the uncertainties ..but it sounds like your Dad is in a much better place for now than it was feared after the surgery. Wishing your Dad great results from the Nivo and for a continued recovery. Hang on in there for now…and don't let the fear spiral out of control. Keep the deep breathing and distraction techniques going . One day at a time and all that.. You and your Mom are strong and can do this….
Best wishes
Deb
The report has left it to the neuro to decide if further investigations are appropriate- and it doesn't sound like this possibility was raised.
-
- January 6, 2017 at 11:23 pm
Hi Jen,
Deep breath first.
Look for the good- ( and the good bits are the certain ones )
So- No progression seen in known lesions- that is good given Nivo only recently started…
No obvious new lesions- which is great .
Nothing acute-so no calls for panic re diagnostics etc.
The radiographer is identifying possibles and the indications are tiny and uncertain. Your Dad has had a lot of intervention in this area over the last couple of months with the craniotomy and gamma knife procedures that must make disturbances on scan results more likely. I would go with that thought for now and that the nivo is doing its job. Travel in hope if you can – and take comfort from the known positives-like driving being on the menu again. It is hard to deal with all the uncertainties ..but it sounds like your Dad is in a much better place for now than it was feared after the surgery. Wishing your Dad great results from the Nivo and for a continued recovery. Hang on in there for now…and don't let the fear spiral out of control. Keep the deep breathing and distraction techniques going . One day at a time and all that.. You and your Mom are strong and can do this….
Best wishes
Deb
The report has left it to the neuro to decide if further investigations are appropriate- and it doesn't sound like this possibility was raised.
-
- January 7, 2017 at 12:42 am
Hi Jen,
I am so sorry about this latest development. The burden of fear on the caregivers is just horrible. One thing I have come to understand is that this thing is a roller coaster. The drops are terrible but you *can* get more accustomed to them. The peaks and lulls are like vacations from the ride. I am praying you and your dad hit a lull soon.
– Paul
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- January 7, 2017 at 12:53 am
Thank you Paul. I spoke to the doc and she said this could be a "grave" additon to his diagnosis. I am so sad for him, he is doing so well. I hope you are hanging in there my friend. Have you decided your next move yet?
Jen
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- January 7, 2017 at 12:53 am
Thank you Paul. I spoke to the doc and she said this could be a "grave" additon to his diagnosis. I am so sad for him, he is doing so well. I hope you are hanging in there my friend. Have you decided your next move yet?
Jen
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- January 7, 2017 at 12:53 am
Thank you Paul. I spoke to the doc and she said this could be a "grave" additon to his diagnosis. I am so sad for him, he is doing so well. I hope you are hanging in there my friend. Have you decided your next move yet?
Jen
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- January 7, 2017 at 12:42 am
Hi Jen,
I am so sorry about this latest development. The burden of fear on the caregivers is just horrible. One thing I have come to understand is that this thing is a roller coaster. The drops are terrible but you *can* get more accustomed to them. The peaks and lulls are like vacations from the ride. I am praying you and your dad hit a lull soon.
– Paul
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- January 7, 2017 at 12:42 am
Hi Jen,
I am so sorry about this latest development. The burden of fear on the caregivers is just horrible. One thing I have come to understand is that this thing is a roller coaster. The drops are terrible but you *can* get more accustomed to them. The peaks and lulls are like vacations from the ride. I am praying you and your dad hit a lull soon.
– Paul
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- January 7, 2017 at 6:55 am
Jen, Sorry to hear about your recent concerns. Remember LMD is rare. Be aware that it is sometimes difficult to diagnose as it doesn't always present in the various tests. Often there is only a presumptive diagnosis based on neurologic symptoms. Other testing methods include MRI evidence and CSF testing (positive csf cytology is definitive.) Should your father have CSF testing, please ask if the first test comes back negative, that up to two more follow-up tests be performed in short order so as to increase the accuracy of the test (not done for Adriana the first time around.) They are looking for one or a few cancer cells in tablespoon sample that came from a coke can amount of CSF that may not be mixed well.
Here is some diagnostic info.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3059292/
Best wishes
Spend time making the best of life and enjoying every moment.
Rob
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- January 8, 2017 at 4:02 am
Hi Rob. Thank you so much for all of the great information. I will absolutely demand as many tests as it takes to know what we are dealing with. I am so darn scared!!! I just saw him tonight and he is doing so well, he even drove for the first time today in months! He was so proud of himself and thrilled. Dad doesn't read the reports, he is not good with that stuff. Mom and I are the only ones that know whats going on, I asked my mom to please hold off telling him until next week, he is having such a great weekend, why worry him for no reason. How is Adriana doing?
Jen
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- January 8, 2017 at 4:02 am
Hi Rob. Thank you so much for all of the great information. I will absolutely demand as many tests as it takes to know what we are dealing with. I am so darn scared!!! I just saw him tonight and he is doing so well, he even drove for the first time today in months! He was so proud of himself and thrilled. Dad doesn't read the reports, he is not good with that stuff. Mom and I are the only ones that know whats going on, I asked my mom to please hold off telling him until next week, he is having such a great weekend, why worry him for no reason. How is Adriana doing?
Jen
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- January 8, 2017 at 4:02 am
Hi Rob. Thank you so much for all of the great information. I will absolutely demand as many tests as it takes to know what we are dealing with. I am so darn scared!!! I just saw him tonight and he is doing so well, he even drove for the first time today in months! He was so proud of himself and thrilled. Dad doesn't read the reports, he is not good with that stuff. Mom and I are the only ones that know whats going on, I asked my mom to please hold off telling him until next week, he is having such a great weekend, why worry him for no reason. How is Adriana doing?
Jen
-
- January 7, 2017 at 6:55 am
Jen, Sorry to hear about your recent concerns. Remember LMD is rare. Be aware that it is sometimes difficult to diagnose as it doesn't always present in the various tests. Often there is only a presumptive diagnosis based on neurologic symptoms. Other testing methods include MRI evidence and CSF testing (positive csf cytology is definitive.) Should your father have CSF testing, please ask if the first test comes back negative, that up to two more follow-up tests be performed in short order so as to increase the accuracy of the test (not done for Adriana the first time around.) They are looking for one or a few cancer cells in tablespoon sample that came from a coke can amount of CSF that may not be mixed well.
Here is some diagnostic info.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3059292/
Best wishes
Spend time making the best of life and enjoying every moment.
Rob
-
- January 7, 2017 at 6:55 am
Jen, Sorry to hear about your recent concerns. Remember LMD is rare. Be aware that it is sometimes difficult to diagnose as it doesn't always present in the various tests. Often there is only a presumptive diagnosis based on neurologic symptoms. Other testing methods include MRI evidence and CSF testing (positive csf cytology is definitive.) Should your father have CSF testing, please ask if the first test comes back negative, that up to two more follow-up tests be performed in short order so as to increase the accuracy of the test (not done for Adriana the first time around.) They are looking for one or a few cancer cells in tablespoon sample that came from a coke can amount of CSF that may not be mixed well.
Here is some diagnostic info.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3059292/
Best wishes
Spend time making the best of life and enjoying every moment.
Rob
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- January 7, 2017 at 9:10 pm
Jen, I just wanted to let you know I have been thinking about your dad. He is on Keytruda. How many doses now? If anything else is going on, which is absolutely npt for sure, here is to Keytruda getting in there doing some damage. The fact that your dad is feeling so well can only be a good sign.Please update when you can.
Annie
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- January 8, 2017 at 3:58 am
Hi Annie, thank you so very much for thinking of us. Dad is only on OPDIVO, he has had 4 doses. They wanted to get somthing started right after gamma knife/craniotomy and felt that a combo would be much to hard on his recovery. Side effects from Opdivo have been very minimal. I am just hoping and praying that they are wrong, but my heart tells me diffrently. I was doing so well for several months, but this just felt like a sucker punch in my gut. I just don't want to experience life without him in it 🙁
xo Jen
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- January 8, 2017 at 9:39 pm
Jenn, I know. I can’t see life without my dad either. It is all very surreal.
I have spent a good 50 hours with my dad the past 11 days. I live in America and my parents are usually there close by most of the year, but since this all started happening while they were in their native Sweden this is where he is treated. So hard being so far away. I felt I needed to come here and spend quality time with my dad. He is currently at an assisted living/rehab facility and unable to walk. We spent New Years Eve eating dinner in his room listening to music. Precious moments and I feel each minute has been a gift.His brain mets are pretty much stable as of now but he is very mentally tired and physically impared. His speech is poor as well. It is heartbreaking. We are hoping the Taf/Mek combo will work. He has been on them for about a week now.
Seems Opdivo will need a bit more time to kick in for your dad. Only 4 infusions so far. Keep the faith that it will work! And I am so glad to hear your dad is doing so well. Having good quality of life. Enjoy him!
Annie
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- January 8, 2017 at 9:39 pm
Jenn, I know. I can’t see life without my dad either. It is all very surreal.
I have spent a good 50 hours with my dad the past 11 days. I live in America and my parents are usually there close by most of the year, but since this all started happening while they were in their native Sweden this is where he is treated. So hard being so far away. I felt I needed to come here and spend quality time with my dad. He is currently at an assisted living/rehab facility and unable to walk. We spent New Years Eve eating dinner in his room listening to music. Precious moments and I feel each minute has been a gift.His brain mets are pretty much stable as of now but he is very mentally tired and physically impared. His speech is poor as well. It is heartbreaking. We are hoping the Taf/Mek combo will work. He has been on them for about a week now.
Seems Opdivo will need a bit more time to kick in for your dad. Only 4 infusions so far. Keep the faith that it will work! And I am so glad to hear your dad is doing so well. Having good quality of life. Enjoy him!
Annie
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- January 8, 2017 at 9:39 pm
Jenn, I know. I can’t see life without my dad either. It is all very surreal.
I have spent a good 50 hours with my dad the past 11 days. I live in America and my parents are usually there close by most of the year, but since this all started happening while they were in their native Sweden this is where he is treated. So hard being so far away. I felt I needed to come here and spend quality time with my dad. He is currently at an assisted living/rehab facility and unable to walk. We spent New Years Eve eating dinner in his room listening to music. Precious moments and I feel each minute has been a gift.His brain mets are pretty much stable as of now but he is very mentally tired and physically impared. His speech is poor as well. It is heartbreaking. We are hoping the Taf/Mek combo will work. He has been on them for about a week now.
Seems Opdivo will need a bit more time to kick in for your dad. Only 4 infusions so far. Keep the faith that it will work! And I am so glad to hear your dad is doing so well. Having good quality of life. Enjoy him!
Annie
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- January 9, 2017 at 5:17 am
Oh Annie, I am so very sorry to hear about your Dad. My heart literally breaks reading this, because I know we have the same feelings for our Dads. I am so happy that you are having some quality time with him. I pray that the taf/mek combo will work for him. Its good that his brain mets are stable, and hopefully he is able to get some rest so that he can build up his strength. i can't imagine the predicament you are in with you residing in the US and him in Europe. Just the time difference alone makes communication difficult. Hang in there, enjoy every moment with your Dad. Sending you virtual hugs.
XO Jen
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- January 9, 2017 at 5:17 am
Oh Annie, I am so very sorry to hear about your Dad. My heart literally breaks reading this, because I know we have the same feelings for our Dads. I am so happy that you are having some quality time with him. I pray that the taf/mek combo will work for him. Its good that his brain mets are stable, and hopefully he is able to get some rest so that he can build up his strength. i can't imagine the predicament you are in with you residing in the US and him in Europe. Just the time difference alone makes communication difficult. Hang in there, enjoy every moment with your Dad. Sending you virtual hugs.
XO Jen
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- January 9, 2017 at 5:17 am
Oh Annie, I am so very sorry to hear about your Dad. My heart literally breaks reading this, because I know we have the same feelings for our Dads. I am so happy that you are having some quality time with him. I pray that the taf/mek combo will work for him. Its good that his brain mets are stable, and hopefully he is able to get some rest so that he can build up his strength. i can't imagine the predicament you are in with you residing in the US and him in Europe. Just the time difference alone makes communication difficult. Hang in there, enjoy every moment with your Dad. Sending you virtual hugs.
XO Jen
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- January 8, 2017 at 3:58 am
Hi Annie, thank you so very much for thinking of us. Dad is only on OPDIVO, he has had 4 doses. They wanted to get somthing started right after gamma knife/craniotomy and felt that a combo would be much to hard on his recovery. Side effects from Opdivo have been very minimal. I am just hoping and praying that they are wrong, but my heart tells me diffrently. I was doing so well for several months, but this just felt like a sucker punch in my gut. I just don't want to experience life without him in it 🙁
xo Jen
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- January 8, 2017 at 3:58 am
Hi Annie, thank you so very much for thinking of us. Dad is only on OPDIVO, he has had 4 doses. They wanted to get somthing started right after gamma knife/craniotomy and felt that a combo would be much to hard on his recovery. Side effects from Opdivo have been very minimal. I am just hoping and praying that they are wrong, but my heart tells me diffrently. I was doing so well for several months, but this just felt like a sucker punch in my gut. I just don't want to experience life without him in it 🙁
xo Jen
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- January 7, 2017 at 9:10 pm
Jen, I just wanted to let you know I have been thinking about your dad. He is on Keytruda. How many doses now? If anything else is going on, which is absolutely npt for sure, here is to Keytruda getting in there doing some damage. The fact that your dad is feeling so well can only be a good sign.Please update when you can.
Annie
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- January 7, 2017 at 9:10 pm
Jen, I just wanted to let you know I have been thinking about your dad. He is on Keytruda. How many doses now? If anything else is going on, which is absolutely npt for sure, here is to Keytruda getting in there doing some damage. The fact that your dad is feeling so well can only be a good sign.Please update when you can.
Annie
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