› Forums › General Melanoma Community › Ready to face oncologist
- This topic has 24 replies, 6 voices, and was last updated 7 years, 7 months ago by
SOLE.
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- October 16, 2016 at 3:36 pm
Hello all
Here is a brief summary of my situation
T3bN1aM0 (as of august for pet and CT and sept. for WLE and SLN)
Primary on plantar of the foot: Breslow 2.85 (at least), Clark 4, Ulcerated (bled for a month before removal), mitoses 4mm2, vertical growth phase, lymphovascular or perineural or microsatellitosis absent, TILs present non brisk.
WLE: ALL margins clear despite a small 5mm portion missing of tissue because of toes that were saved. Breslow 1.47, no ulceration, mitoses 0mm2, lymphovascular or perineral absent. Microsatellitosis: no clear evidence, TILs absent.
One sentinel node out of three; found ´rare isolated cells' only. Onco surgeon said no CLND necessary.
Here is my plan and I would like to have feedback from you.
I will be given up a new scan schedule and all but even if my first scans come up clear (which I think they will given my short history) here is what I would like to try as adjuvant therapy.
I should say that I think Ihave more chances than others the mel cells have traveled through my blood stream and not so much my lymph nodes.
I am 48 male and in good health, lost all my extra weight this summer through dieting (20lbs) plus another 15 lbs since then out of anxiety. Apetite is there when moral is good and now I am taking more and more ownership of what's happened. I have no intention of letting this disease win over me. Have a beautiful soon to be 14 years old daughter and a very special girlfriend by my side. Work seems to resume for me (am self employed), phone rings and I have Life saying to me: are you going to continue living or what? Hell yes!
Here is my plan. Interferon: no. Ipi alone: no I dont see much advantages of doing this alone since only 20% respond to that drug. So I am looking at the combo ipi+nivo. I know its not standard of care and that it has its share of side effects but listen, if I progressed to Stage 4, I would be offered that combo so why not be pro-active instead? If I'm not mistaken, there is about a 50% response rate which is the highest rate out there.
That is my thinking. I dont have anything to report about lumps or secondary mel or lesions on my skin despite the huge amount of nevi I have. About inside my body I guess my first scan will show what the situation is. I think it will be negative.
In other words, I plan to remain stage 3 for the rest of my life or until they find a cure in about ten years from now.
Toughts on my plan? Sode effects to expect and for how long? Maintenance doses or not?
- Replies
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- October 16, 2016 at 3:49 pm
The combo is not available for the adjuvant setting, so it's unlikely you'll be able to have that as an option. I think watch and wait is the best approach for you, given the very very small amount of mel found in your lymph node. I would suggest a trial, but, I think for most adjuvant trials you have to have had more than one lymph node affected and sometimes they require a CLND.
My suggestion is to live life, enjoy your girlfriend and daughter, be vigilant with doctor appointments and scheduled scans, and there's a good chance you will stay stage 3 NED forever! If not, through vigilant watching, something would be caught very early and dealt with if it comes up.
All the best,
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- October 16, 2016 at 3:49 pm
The combo is not available for the adjuvant setting, so it's unlikely you'll be able to have that as an option. I think watch and wait is the best approach for you, given the very very small amount of mel found in your lymph node. I would suggest a trial, but, I think for most adjuvant trials you have to have had more than one lymph node affected and sometimes they require a CLND.
My suggestion is to live life, enjoy your girlfriend and daughter, be vigilant with doctor appointments and scheduled scans, and there's a good chance you will stay stage 3 NED forever! If not, through vigilant watching, something would be caught very early and dealt with if it comes up.
All the best,
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- October 16, 2016 at 9:20 pm
It is not legal for a doctor to provide you that option. It is not FDA approved for stage III adjuvant or stage III at all with the possible exception of stage III unresectable. Insurance wouldn't pay and this is a 6 figure treatment. Adjuvant treatments for stage III include Interferon and Ipi 10mg. Other than that, you have to find a trial to get any different type of treatment.
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- October 16, 2016 at 9:20 pm
It is not legal for a doctor to provide you that option. It is not FDA approved for stage III adjuvant or stage III at all with the possible exception of stage III unresectable. Insurance wouldn't pay and this is a 6 figure treatment. Adjuvant treatments for stage III include Interferon and Ipi 10mg. Other than that, you have to find a trial to get any different type of treatment.
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- October 16, 2016 at 9:20 pm
It is not legal for a doctor to provide you that option. It is not FDA approved for stage III adjuvant or stage III at all with the possible exception of stage III unresectable. Insurance wouldn't pay and this is a 6 figure treatment. Adjuvant treatments for stage III include Interferon and Ipi 10mg. Other than that, you have to find a trial to get any different type of treatment.
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- October 16, 2016 at 10:08 pm
Anon gave the answer: insurance will not approve it and your oncologist will not either. Unless you are a billionaire, I would say paying out of pocket is not possible.. also, I don't even think you could just pay full price and get the drug, just doesn't work that way. There's no reason to put your body through all that anyway, like I said, with such a small amount found, I'd much rather stay feeling good and be vigilant about check ups and scans.
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- October 16, 2016 at 10:08 pm
Anon gave the answer: insurance will not approve it and your oncologist will not either. Unless you are a billionaire, I would say paying out of pocket is not possible.. also, I don't even think you could just pay full price and get the drug, just doesn't work that way. There's no reason to put your body through all that anyway, like I said, with such a small amount found, I'd much rather stay feeling good and be vigilant about check ups and scans.
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- October 16, 2016 at 10:08 pm
Anon gave the answer: insurance will not approve it and your oncologist will not either. Unless you are a billionaire, I would say paying out of pocket is not possible.. also, I don't even think you could just pay full price and get the drug, just doesn't work that way. There's no reason to put your body through all that anyway, like I said, with such a small amount found, I'd much rather stay feeling good and be vigilant about check ups and scans.
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- October 16, 2016 at 3:49 pm
The combo is not available for the adjuvant setting, so it's unlikely you'll be able to have that as an option. I think watch and wait is the best approach for you, given the very very small amount of mel found in your lymph node. I would suggest a trial, but, I think for most adjuvant trials you have to have had more than one lymph node affected and sometimes they require a CLND.
My suggestion is to live life, enjoy your girlfriend and daughter, be vigilant with doctor appointments and scheduled scans, and there's a good chance you will stay stage 3 NED forever! If not, through vigilant watching, something would be caught very early and dealt with if it comes up.
All the best,
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- October 16, 2016 at 10:16 pm
Hi Sole,
Jenn is giving you good advice. Live a little. The possible harms from treatments at this stage will probably exceed possible benefits ….the scales might tip if you had palpable tumours in a number of lymph nodes but this is not the case.
For now you can enjoy NED status and long may it stay this way. If and when you need the drug treatments they may have got better at targetting them to individuals and may well have sorted the likely best dosages and the best order /combination of treatments with lowest side effect burden.
If I was walking in your shoes this would be my choice. Melanoma is a strange beast and difficult to predict .
Try and listen to your oncologist's game plan in the first instance, – then ask your questions. You need these folk to go the extra mile for you and part of that is building a working relationship that demonstrates you value their skills and expertise.He or she is lkely to set out the choices and pros and cons and make a recommendation.
Ipi was approved in 2015 by the FDA for treatment at stage III but if you look at Celestes blog better results are gained if treatment with the PD1 preceeds treatment with ipi….but the research on this is only just coming through. I gather it can be quite tough treatment with ipi and you have chance to live your life unburdened by treatment .Do some of the things you always planned.
Best wishes
Deb
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- October 16, 2016 at 10:16 pm
Hi Sole,
Jenn is giving you good advice. Live a little. The possible harms from treatments at this stage will probably exceed possible benefits ….the scales might tip if you had palpable tumours in a number of lymph nodes but this is not the case.
For now you can enjoy NED status and long may it stay this way. If and when you need the drug treatments they may have got better at targetting them to individuals and may well have sorted the likely best dosages and the best order /combination of treatments with lowest side effect burden.
If I was walking in your shoes this would be my choice. Melanoma is a strange beast and difficult to predict .
Try and listen to your oncologist's game plan in the first instance, – then ask your questions. You need these folk to go the extra mile for you and part of that is building a working relationship that demonstrates you value their skills and expertise.He or she is lkely to set out the choices and pros and cons and make a recommendation.
Ipi was approved in 2015 by the FDA for treatment at stage III but if you look at Celestes blog better results are gained if treatment with the PD1 preceeds treatment with ipi….but the research on this is only just coming through. I gather it can be quite tough treatment with ipi and you have chance to live your life unburdened by treatment .Do some of the things you always planned.
Best wishes
Deb
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- October 16, 2016 at 10:16 pm
Hi Sole,
Jenn is giving you good advice. Live a little. The possible harms from treatments at this stage will probably exceed possible benefits ….the scales might tip if you had palpable tumours in a number of lymph nodes but this is not the case.
For now you can enjoy NED status and long may it stay this way. If and when you need the drug treatments they may have got better at targetting them to individuals and may well have sorted the likely best dosages and the best order /combination of treatments with lowest side effect burden.
If I was walking in your shoes this would be my choice. Melanoma is a strange beast and difficult to predict .
Try and listen to your oncologist's game plan in the first instance, – then ask your questions. You need these folk to go the extra mile for you and part of that is building a working relationship that demonstrates you value their skills and expertise.He or she is lkely to set out the choices and pros and cons and make a recommendation.
Ipi was approved in 2015 by the FDA for treatment at stage III but if you look at Celestes blog better results are gained if treatment with the PD1 preceeds treatment with ipi….but the research on this is only just coming through. I gather it can be quite tough treatment with ipi and you have chance to live your life unburdened by treatment .Do some of the things you always planned.
Best wishes
Deb
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- October 17, 2016 at 12:37 am
There are treatment related deaths for both ipi and novo. My thoughts are Why expose body to that kind of risk to treat what might not be there?
I would Listen to and consider your oncologist's recommendations, get a second opinion if you still aren't sure.
I am also high risk to recur/progress but beat the odds coming up node negative.. and am just doing all I can to keep my immune system in fighting shape. (Exercise, diet, music, meditation, prayer, yoga, looking into fermented wheat germ extract but not sure) All things that also positively affect my quality of life and that of my family. Then later, if Mel rears his head I will be ready to go after him with all my strength, and more will have been learned about the best way to use these new drugs and prevent/deal with their toxicities.
blessings,
joyce
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- October 17, 2016 at 12:37 am
There are treatment related deaths for both ipi and novo. My thoughts are Why expose body to that kind of risk to treat what might not be there?
I would Listen to and consider your oncologist's recommendations, get a second opinion if you still aren't sure.
I am also high risk to recur/progress but beat the odds coming up node negative.. and am just doing all I can to keep my immune system in fighting shape. (Exercise, diet, music, meditation, prayer, yoga, looking into fermented wheat germ extract but not sure) All things that also positively affect my quality of life and that of my family. Then later, if Mel rears his head I will be ready to go after him with all my strength, and more will have been learned about the best way to use these new drugs and prevent/deal with their toxicities.
blessings,
joyce
-
- October 17, 2016 at 12:37 am
There are treatment related deaths for both ipi and novo. My thoughts are Why expose body to that kind of risk to treat what might not be there?
I would Listen to and consider your oncologist's recommendations, get a second opinion if you still aren't sure.
I am also high risk to recur/progress but beat the odds coming up node negative.. and am just doing all I can to keep my immune system in fighting shape. (Exercise, diet, music, meditation, prayer, yoga, looking into fermented wheat germ extract but not sure) All things that also positively affect my quality of life and that of my family. Then later, if Mel rears his head I will be ready to go after him with all my strength, and more will have been learned about the best way to use these new drugs and prevent/deal with their toxicities.
blessings,
joyce
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- October 17, 2016 at 7:53 pm
Is there possible going to be a cure in 10 years?
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- October 17, 2016 at 7:53 pm
Is there possible going to be a cure in 10 years?
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- October 17, 2016 at 7:53 pm
Is there possible going to be a cure in 10 years?
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