› Forums › General Melanoma Community › Cont. Advice and support form all you warriors
- This topic has 9 replies, 2 voices, and was last updated 9 years, 1 month ago by
debwray.
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- October 29, 2016 at 8:02 pm
Oops ! Posted before I finished. Anybody know how to edit a post ? So we are awaiting a diagnosis and in the meantime my father was in a hospital that had no oncology. I was continually disheartened by the doctors who basically kept giving my dad a grim diagnosis. He will be referred to a proper oncologist once the diagnosis is confirmed. When I was reading the discharge papers they referred to my fathers spots as masses ? How big does a spot have to be to be considered a mass ? Or is this just the terminology they use for all spots of cancer ? Has anyone here had numerous spots that were treatable ? This has to be the most incredibly stressful time waiting for diagnosis and hopefully a treatment plan. Thanks in advance !!!
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- October 29, 2016 at 9:42 pm
Hi Jango,
Think the docs would refer to spots on say a ct scan- where the nature of the difference in density of tissue etc has yet to be determined. Not sure how big anything needs to be to be given the terminology of a mass but as they have done biopsies and are sure that he has spots/ masses in several areas – it does look like they are creeping in the right direction re diagnosis but until confirmed yu are still in no mans land to a degree.
Have they given him steroids to make him feel better and stimulate appetite ? This might be contra- indicated for some of the newer immunotherapies like pembro or nivo.
Again- if melanoma is confirmed your Dad needs someone experienced and up to date in the treatment of melanoma. Things do look grim at stage 4, but the newer treatments can treat multiple mets via his immune system though the length of response (if any ) does vary between individualsand different treatment regimes.
Yes, this is a stressful time – might be worth shouting out your location and asking for Dr recommendations ?-if you know who or where you want to be referred to might help make things happen a little bit faster.
PS a search on cliniacltrials.gov- condition melanoma – open studies- and location the area you are in should give you an idea of who and where is on the money for clinical research and who has experience in managing the side effects of some of the newer drugs.
Best wishes
Deb
ps I wish there was an edit button too- have ended up with duplicate posts too.. I'm just not patient with the post message button…….
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- October 29, 2016 at 9:42 pm
Hi Jango,
Think the docs would refer to spots on say a ct scan- where the nature of the difference in density of tissue etc has yet to be determined. Not sure how big anything needs to be to be given the terminology of a mass but as they have done biopsies and are sure that he has spots/ masses in several areas – it does look like they are creeping in the right direction re diagnosis but until confirmed yu are still in no mans land to a degree.
Have they given him steroids to make him feel better and stimulate appetite ? This might be contra- indicated for some of the newer immunotherapies like pembro or nivo.
Again- if melanoma is confirmed your Dad needs someone experienced and up to date in the treatment of melanoma. Things do look grim at stage 4, but the newer treatments can treat multiple mets via his immune system though the length of response (if any ) does vary between individualsand different treatment regimes.
Yes, this is a stressful time – might be worth shouting out your location and asking for Dr recommendations ?-if you know who or where you want to be referred to might help make things happen a little bit faster.
PS a search on cliniacltrials.gov- condition melanoma – open studies- and location the area you are in should give you an idea of who and where is on the money for clinical research and who has experience in managing the side effects of some of the newer drugs.
Best wishes
Deb
ps I wish there was an edit button too- have ended up with duplicate posts too.. I'm just not patient with the post message button…….
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- October 30, 2016 at 1:10 am
Hi Deb, thanks for all of the info. Yes they have given him steroids and it has made a tremendous difference. Would it mean he couldn't have immunotherapy drugs ? Or would they just stop it ? It is such a s are situation, but it seems that some stage 4 patients are responding to these treatments. Just looking for hope.xx
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- October 30, 2016 at 1:10 am
Hi Deb, thanks for all of the info. Yes they have given him steroids and it has made a tremendous difference. Would it mean he couldn't have immunotherapy drugs ? Or would they just stop it ? It is such a s are situation, but it seems that some stage 4 patients are responding to these treatments. Just looking for hope.xx
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- October 30, 2016 at 2:34 am
Hello again,
The trials of any of the new immunotherapy drugs excluded those who needed steroid treatment for auto immume conditions. Presumably as it was anticipated they would have worse side effects when their immune system was stimulated. Some have had responses whilst on steroid treatment for side effects. Not sure if a melanoma expert would want steroids tapering before treatment started but pretty sure clinical trials might be a problem whilst on steroids for certain drugs. Think you need more bits of the puzzle- like BRAF status etc but the steroids explain your Dads condition appearing to have improved without treatment of the underlying problems.
Hang on in there and see what is offered.
Best wishes and internet hugs
Deb
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- October 30, 2016 at 2:34 am
Hello again,
The trials of any of the new immunotherapy drugs excluded those who needed steroid treatment for auto immume conditions. Presumably as it was anticipated they would have worse side effects when their immune system was stimulated. Some have had responses whilst on steroid treatment for side effects. Not sure if a melanoma expert would want steroids tapering before treatment started but pretty sure clinical trials might be a problem whilst on steroids for certain drugs. Think you need more bits of the puzzle- like BRAF status etc but the steroids explain your Dads condition appearing to have improved without treatment of the underlying problems.
Hang on in there and see what is offered.
Best wishes and internet hugs
Deb
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- October 30, 2016 at 2:34 am
Hello again,
The trials of any of the new immunotherapy drugs excluded those who needed steroid treatment for auto immume conditions. Presumably as it was anticipated they would have worse side effects when their immune system was stimulated. Some have had responses whilst on steroid treatment for side effects. Not sure if a melanoma expert would want steroids tapering before treatment started but pretty sure clinical trials might be a problem whilst on steroids for certain drugs. Think you need more bits of the puzzle- like BRAF status etc but the steroids explain your Dads condition appearing to have improved without treatment of the underlying problems.
Hang on in there and see what is offered.
Best wishes and internet hugs
Deb
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- October 30, 2016 at 1:10 am
Hi Deb, thanks for all of the info. Yes they have given him steroids and it has made a tremendous difference. Would it mean he couldn't have immunotherapy drugs ? Or would they just stop it ? It is such a s are situation, but it seems that some stage 4 patients are responding to these treatments. Just looking for hope.xx
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- October 29, 2016 at 9:42 pm
Hi Jango,
Think the docs would refer to spots on say a ct scan- where the nature of the difference in density of tissue etc has yet to be determined. Not sure how big anything needs to be to be given the terminology of a mass but as they have done biopsies and are sure that he has spots/ masses in several areas – it does look like they are creeping in the right direction re diagnosis but until confirmed yu are still in no mans land to a degree.
Have they given him steroids to make him feel better and stimulate appetite ? This might be contra- indicated for some of the newer immunotherapies like pembro or nivo.
Again- if melanoma is confirmed your Dad needs someone experienced and up to date in the treatment of melanoma. Things do look grim at stage 4, but the newer treatments can treat multiple mets via his immune system though the length of response (if any ) does vary between individualsand different treatment regimes.
Yes, this is a stressful time – might be worth shouting out your location and asking for Dr recommendations ?-if you know who or where you want to be referred to might help make things happen a little bit faster.
PS a search on cliniacltrials.gov- condition melanoma – open studies- and location the area you are in should give you an idea of who and where is on the money for clinical research and who has experience in managing the side effects of some of the newer drugs.
Best wishes
Deb
ps I wish there was an edit button too- have ended up with duplicate posts too.. I'm just not patient with the post message button…….
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