› Forums › General Melanoma Community › newly stage 4
- This topic has 18 replies, 5 voices, and was last updated 7 years, 3 months ago by Joannxbuc.
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- November 26, 2016 at 12:56 am
Well I had my wedge lung biopsy 2 days ago and the preliminary results are that it is melanoma. It was my first question to my husband and daughter in the recovery room. Although I knew it was very liekly it was still hard to hear, and I know it was hard for them to hear too.
I will be talking to my oncologist soon, and just want to know if anyone has any suggestions aobut what questions I should be sure to ask. I am BRAF negaive, was stage 3C prior to this and have not had any treatment other than CLND left neck.
Thanks for being here as a place for people struggling and seeking answers to meet.
Peggy
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- November 26, 2016 at 1:02 am
Dang it, I was hoping that your biopsy would come back clean, but of course melanoma is a bully and doesn't like to play nice.
Glad you know for sure now and you can start treatment. I am sure just from being on this forum you've heard all the great approved options like Ipi/Nivo or Keytruda. Talk to your onc about those options, maybe ask about trials, but really at this point, with Ipi/Nivo & Keytruda available, trials seem like more of a thing to get into if you've already tried everythinge else. That was my opinion anyway after my most recent talk with my oncologist when I had to decide what path to take.
Sending you lots of hugs and I'm sure others will chime in with more good info and questions you can ask your onc.
Rest up,
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- November 26, 2016 at 1:02 am
Dang it, I was hoping that your biopsy would come back clean, but of course melanoma is a bully and doesn't like to play nice.
Glad you know for sure now and you can start treatment. I am sure just from being on this forum you've heard all the great approved options like Ipi/Nivo or Keytruda. Talk to your onc about those options, maybe ask about trials, but really at this point, with Ipi/Nivo & Keytruda available, trials seem like more of a thing to get into if you've already tried everythinge else. That was my opinion anyway after my most recent talk with my oncologist when I had to decide what path to take.
Sending you lots of hugs and I'm sure others will chime in with more good info and questions you can ask your onc.
Rest up,
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- November 26, 2016 at 2:27 pm
Thanks Jenn-
I have been keeping track of your situation too. I'm glad that you've been tolerating ipi/nivo pretty well so far. You are very knowledgable about all of this. I've been a little bit in denial by not learning more about treatment options before now- I sort of glossed over that when reading people's posts hoping that it wouldn't apply to me. Really when I think about it I have been stage 4 since April but just didn't know it – those spots have been there in my lungs since then (though I knew it was possible).
I'll get more informed now, put on my big girl pants, etc. In the meantime, I have Thanksgiving dinner to go to at my daughters today. 🙂
Hope your day is good,
Peggy
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- November 26, 2016 at 2:27 pm
Thanks Jenn-
I have been keeping track of your situation too. I'm glad that you've been tolerating ipi/nivo pretty well so far. You are very knowledgable about all of this. I've been a little bit in denial by not learning more about treatment options before now- I sort of glossed over that when reading people's posts hoping that it wouldn't apply to me. Really when I think about it I have been stage 4 since April but just didn't know it – those spots have been there in my lungs since then (though I knew it was possible).
I'll get more informed now, put on my big girl pants, etc. In the meantime, I have Thanksgiving dinner to go to at my daughters today. 🙂
Hope your day is good,
Peggy
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- November 26, 2016 at 2:27 pm
Thanks Jenn-
I have been keeping track of your situation too. I'm glad that you've been tolerating ipi/nivo pretty well so far. You are very knowledgable about all of this. I've been a little bit in denial by not learning more about treatment options before now- I sort of glossed over that when reading people's posts hoping that it wouldn't apply to me. Really when I think about it I have been stage 4 since April but just didn't know it – those spots have been there in my lungs since then (though I knew it was possible).
I'll get more informed now, put on my big girl pants, etc. In the meantime, I have Thanksgiving dinner to go to at my daughters today. 🙂
Hope your day is good,
Peggy
-
- November 26, 2016 at 1:02 am
Dang it, I was hoping that your biopsy would come back clean, but of course melanoma is a bully and doesn't like to play nice.
Glad you know for sure now and you can start treatment. I am sure just from being on this forum you've heard all the great approved options like Ipi/Nivo or Keytruda. Talk to your onc about those options, maybe ask about trials, but really at this point, with Ipi/Nivo & Keytruda available, trials seem like more of a thing to get into if you've already tried everythinge else. That was my opinion anyway after my most recent talk with my oncologist when I had to decide what path to take.
Sending you lots of hugs and I'm sure others will chime in with more good info and questions you can ask your onc.
Rest up,
-
- November 26, 2016 at 10:03 pm
Hi Peggy,
Was also hoping your spots would not be melanoma. The waits and decisions are hard to deal with for sure.
I'm Braf negative too- and was confirmed stage 4 in October. Just had second dose Ipi nivo on Monday. So far not as traumatic as expected. Am taking probioticsto try and get the right bacteria flourishing, vit d and tumeric- in fact med student daughter has been in the haematology clinic this week and the consultant there was recommending 4 capsules of tumeric a day and VSL3 for the lymphoma patients…..
As for questions- think Jenn has probably pinned down the likely treatment options , with ipi nivo or ipi keytruda having the best overall response rate… but with nivo /keytruda as sole agents likely to be easier to tolerate. The debate re trials seems to be moving on to is a lower dose of ipi sufficient-(and easier to tolerate) ? Is it worth kicking off treatment with a PD1 initially then adding ipi later ? also if you "injure " the tumour via vacine /radiation etc does this also help make the other melanoma cells more visible to the immune system- triple play combo more powerful than the double ?
I'm not sure asking about prognosis is terribly helpful as the range of responses is so very variable between individuals and averages tell you so little about your disease and how well you will respond. My oncologist stuck rigidly to average responses ….which means he can never be wrong. However ,he has said we will review progress at the first scan as it is only then he can work out if I am a responder or not– although Ithink the blood test of LDH give an indicator of disease progression and they are tracking liver size and tenderness before each infusion.
Celeste has posted some info on possible biomarkers that indicate likely response to ipi- odds being increased if LDH is normal or below 2 x normal and also if theneutrophil to lymphocyte ratio is below 4.
Not sure if it was this study – but same message https://www.ncbi.nlm.nih.gov/pubmed/26343230.
The initial shock is a tough period- we have to process the news ourselves- and learn how to cope with the emotional impact of the diagnosis- but then it is like ripples on a pond as we have to witness the pain and distress the diagnosis brings to our family and friends. Familiar routines provide some comfort as does starting treatment as it brings to me the feeling of being helped to mount a defense against this dreadful disease.
Best of wishes to youand your family at this very stressful time. It is a difficult path to tread with all the uncertainty about the future. Easier said than done I know- I needed sleeping pills initially as my mind was restless at night .There is wisdom in taking things one day at a time and enjoying the pleasures of life where we can find them- like your family celebration of thanksgiving. If you have a good medical team I would work on building your relationship with them, and getting them to understand your priorities. My oncologist presented the scan findings formally- laid out treatment choices and gave me the chance to ask further questions at a follow up meeting where I was supposed to give the treatment decision but i was fairly sure I wanted the ipi nivo route quite quickly as in the UK it was easy to go from combo to single agent pd1 treatment but adding ipi later if nivo or pembrolizumab did not work would not have been an option… So I phoned in the decision and asked them to get treatment started asap.
It does seem to be normal to have a sort of duality of mind when dealing with this- I switch from rational calm to emotional wreck depending on various triggers and if I have to explain the current situation and answer the unspoken question about the likely success of treatment. Only saying as it feels very strange a bit like I have a split personality. I guess it is just that emotionally it is very raw and that can be triggered easily but the rational side of my brain has processed the info and has accepted the diagnosis.
Sorry for rambling on- hope it helps a bit. You are definately not on your own …
Deb
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- November 27, 2016 at 1:54 am
Deb please do not apologize- It does help and more than a bit. I find your posts very thoughtful and informative- and I can so relate to the "duality of mind". I go from feeling this sage- like calm to being overcome with fear with no warning. Of course I want to be the strong mama for my family and am trying not to let my anxiety show much to my kids. My husband is a rock and can take my occasionally freak outs.
I have a couple weeks off work to recuperate and will be digging into the studies and sources that are here and in Celeste's blog. I know that my LDH has been within the normal range- last tested in early November. And I'm with you- I've waited long enough, I want to get treatment started.
Thanks again, it means a great deal to me.
Peggy
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- November 27, 2016 at 1:54 am
Deb please do not apologize- It does help and more than a bit. I find your posts very thoughtful and informative- and I can so relate to the "duality of mind". I go from feeling this sage- like calm to being overcome with fear with no warning. Of course I want to be the strong mama for my family and am trying not to let my anxiety show much to my kids. My husband is a rock and can take my occasionally freak outs.
I have a couple weeks off work to recuperate and will be digging into the studies and sources that are here and in Celeste's blog. I know that my LDH has been within the normal range- last tested in early November. And I'm with you- I've waited long enough, I want to get treatment started.
Thanks again, it means a great deal to me.
Peggy
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- November 27, 2016 at 1:54 am
Deb please do not apologize- It does help and more than a bit. I find your posts very thoughtful and informative- and I can so relate to the "duality of mind". I go from feeling this sage- like calm to being overcome with fear with no warning. Of course I want to be the strong mama for my family and am trying not to let my anxiety show much to my kids. My husband is a rock and can take my occasionally freak outs.
I have a couple weeks off work to recuperate and will be digging into the studies and sources that are here and in Celeste's blog. I know that my LDH has been within the normal range- last tested in early November. And I'm with you- I've waited long enough, I want to get treatment started.
Thanks again, it means a great deal to me.
Peggy
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- November 26, 2016 at 10:03 pm
Hi Peggy,
Was also hoping your spots would not be melanoma. The waits and decisions are hard to deal with for sure.
I'm Braf negative too- and was confirmed stage 4 in October. Just had second dose Ipi nivo on Monday. So far not as traumatic as expected. Am taking probioticsto try and get the right bacteria flourishing, vit d and tumeric- in fact med student daughter has been in the haematology clinic this week and the consultant there was recommending 4 capsules of tumeric a day and VSL3 for the lymphoma patients…..
As for questions- think Jenn has probably pinned down the likely treatment options , with ipi nivo or ipi keytruda having the best overall response rate… but with nivo /keytruda as sole agents likely to be easier to tolerate. The debate re trials seems to be moving on to is a lower dose of ipi sufficient-(and easier to tolerate) ? Is it worth kicking off treatment with a PD1 initially then adding ipi later ? also if you "injure " the tumour via vacine /radiation etc does this also help make the other melanoma cells more visible to the immune system- triple play combo more powerful than the double ?
I'm not sure asking about prognosis is terribly helpful as the range of responses is so very variable between individuals and averages tell you so little about your disease and how well you will respond. My oncologist stuck rigidly to average responses ….which means he can never be wrong. However ,he has said we will review progress at the first scan as it is only then he can work out if I am a responder or not– although Ithink the blood test of LDH give an indicator of disease progression and they are tracking liver size and tenderness before each infusion.
Celeste has posted some info on possible biomarkers that indicate likely response to ipi- odds being increased if LDH is normal or below 2 x normal and also if theneutrophil to lymphocyte ratio is below 4.
Not sure if it was this study – but same message https://www.ncbi.nlm.nih.gov/pubmed/26343230.
The initial shock is a tough period- we have to process the news ourselves- and learn how to cope with the emotional impact of the diagnosis- but then it is like ripples on a pond as we have to witness the pain and distress the diagnosis brings to our family and friends. Familiar routines provide some comfort as does starting treatment as it brings to me the feeling of being helped to mount a defense against this dreadful disease.
Best of wishes to youand your family at this very stressful time. It is a difficult path to tread with all the uncertainty about the future. Easier said than done I know- I needed sleeping pills initially as my mind was restless at night .There is wisdom in taking things one day at a time and enjoying the pleasures of life where we can find them- like your family celebration of thanksgiving. If you have a good medical team I would work on building your relationship with them, and getting them to understand your priorities. My oncologist presented the scan findings formally- laid out treatment choices and gave me the chance to ask further questions at a follow up meeting where I was supposed to give the treatment decision but i was fairly sure I wanted the ipi nivo route quite quickly as in the UK it was easy to go from combo to single agent pd1 treatment but adding ipi later if nivo or pembrolizumab did not work would not have been an option… So I phoned in the decision and asked them to get treatment started asap.
It does seem to be normal to have a sort of duality of mind when dealing with this- I switch from rational calm to emotional wreck depending on various triggers and if I have to explain the current situation and answer the unspoken question about the likely success of treatment. Only saying as it feels very strange a bit like I have a split personality. I guess it is just that emotionally it is very raw and that can be triggered easily but the rational side of my brain has processed the info and has accepted the diagnosis.
Sorry for rambling on- hope it helps a bit. You are definately not on your own …
Deb
-
- November 26, 2016 at 10:03 pm
Hi Peggy,
Was also hoping your spots would not be melanoma. The waits and decisions are hard to deal with for sure.
I'm Braf negative too- and was confirmed stage 4 in October. Just had second dose Ipi nivo on Monday. So far not as traumatic as expected. Am taking probioticsto try and get the right bacteria flourishing, vit d and tumeric- in fact med student daughter has been in the haematology clinic this week and the consultant there was recommending 4 capsules of tumeric a day and VSL3 for the lymphoma patients…..
As for questions- think Jenn has probably pinned down the likely treatment options , with ipi nivo or ipi keytruda having the best overall response rate… but with nivo /keytruda as sole agents likely to be easier to tolerate. The debate re trials seems to be moving on to is a lower dose of ipi sufficient-(and easier to tolerate) ? Is it worth kicking off treatment with a PD1 initially then adding ipi later ? also if you "injure " the tumour via vacine /radiation etc does this also help make the other melanoma cells more visible to the immune system- triple play combo more powerful than the double ?
I'm not sure asking about prognosis is terribly helpful as the range of responses is so very variable between individuals and averages tell you so little about your disease and how well you will respond. My oncologist stuck rigidly to average responses ….which means he can never be wrong. However ,he has said we will review progress at the first scan as it is only then he can work out if I am a responder or not– although Ithink the blood test of LDH give an indicator of disease progression and they are tracking liver size and tenderness before each infusion.
Celeste has posted some info on possible biomarkers that indicate likely response to ipi- odds being increased if LDH is normal or below 2 x normal and also if theneutrophil to lymphocyte ratio is below 4.
Not sure if it was this study – but same message https://www.ncbi.nlm.nih.gov/pubmed/26343230.
The initial shock is a tough period- we have to process the news ourselves- and learn how to cope with the emotional impact of the diagnosis- but then it is like ripples on a pond as we have to witness the pain and distress the diagnosis brings to our family and friends. Familiar routines provide some comfort as does starting treatment as it brings to me the feeling of being helped to mount a defense against this dreadful disease.
Best of wishes to youand your family at this very stressful time. It is a difficult path to tread with all the uncertainty about the future. Easier said than done I know- I needed sleeping pills initially as my mind was restless at night .There is wisdom in taking things one day at a time and enjoying the pleasures of life where we can find them- like your family celebration of thanksgiving. If you have a good medical team I would work on building your relationship with them, and getting them to understand your priorities. My oncologist presented the scan findings formally- laid out treatment choices and gave me the chance to ask further questions at a follow up meeting where I was supposed to give the treatment decision but i was fairly sure I wanted the ipi nivo route quite quickly as in the UK it was easy to go from combo to single agent pd1 treatment but adding ipi later if nivo or pembrolizumab did not work would not have been an option… So I phoned in the decision and asked them to get treatment started asap.
It does seem to be normal to have a sort of duality of mind when dealing with this- I switch from rational calm to emotional wreck depending on various triggers and if I have to explain the current situation and answer the unspoken question about the likely success of treatment. Only saying as it feels very strange a bit like I have a split personality. I guess it is just that emotionally it is very raw and that can be triggered easily but the rational side of my brain has processed the info and has accepted the diagnosis.
Sorry for rambling on- hope it helps a bit. You are definately not on your own …
Deb
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- November 28, 2016 at 3:17 pm
I was diagnosed with 7 tumors in my lungs in june, started nivo/ipi in july. I have had several minor side effects, none that stopped treatment. My 14 week scan had 3 either gone or scar tissue left, 2 down to 2.5mm and 2mm and the other 2 down to 1cm from 1.4 and 1.5. I get my last dose of nivo by itslef this friday and then should go back to both drugs on the 90 day maintanance program until 10/2018. I was BRAF negative.
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- November 28, 2016 at 3:17 pm
I was diagnosed with 7 tumors in my lungs in june, started nivo/ipi in july. I have had several minor side effects, none that stopped treatment. My 14 week scan had 3 either gone or scar tissue left, 2 down to 2.5mm and 2mm and the other 2 down to 1cm from 1.4 and 1.5. I get my last dose of nivo by itslef this friday and then should go back to both drugs on the 90 day maintanance program until 10/2018. I was BRAF negative.
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- November 28, 2016 at 3:17 pm
I was diagnosed with 7 tumors in my lungs in june, started nivo/ipi in july. I have had several minor side effects, none that stopped treatment. My 14 week scan had 3 either gone or scar tissue left, 2 down to 2.5mm and 2mm and the other 2 down to 1cm from 1.4 and 1.5. I get my last dose of nivo by itslef this friday and then should go back to both drugs on the 90 day maintanance program until 10/2018. I was BRAF negative.
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- December 16, 2016 at 7:54 pm
Hi–I am newly diagnosed as stage IV. will be meeting with onc. next week to discuss options. All sounds so confusing. ipi/nivo/keytruda? how do you decide? How was your program set up? both nivo/ipi, then nevo, then back to both? how frequent are the IVs? I'm at Dana Farber in Boston, onc says lot of choices.
thanks and best of luck & prayers to everyone on the board
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- December 16, 2016 at 7:54 pm
Hi–I am newly diagnosed as stage IV. will be meeting with onc. next week to discuss options. All sounds so confusing. ipi/nivo/keytruda? how do you decide? How was your program set up? both nivo/ipi, then nevo, then back to both? how frequent are the IVs? I'm at Dana Farber in Boston, onc says lot of choices.
thanks and best of luck & prayers to everyone on the board
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- December 16, 2016 at 7:54 pm
Hi–I am newly diagnosed as stage IV. will be meeting with onc. next week to discuss options. All sounds so confusing. ipi/nivo/keytruda? how do you decide? How was your program set up? both nivo/ipi, then nevo, then back to both? how frequent are the IVs? I'm at Dana Farber in Boston, onc says lot of choices.
thanks and best of luck & prayers to everyone on the board
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