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lou2

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      lou2
      Participant

        You should do what makes you feel safer.  However, having said that, I did that and was sorry afterwards.  I was more or less rushed into it and it was the first opinion.  I should have gone for a second opinion.  It was a kind that grows very slowly, and the PA did not even think it was a problem on first glance.  Just biopsied to make me feel like he was doing something, probably.  At my age and with other health problems, it was unlikely to kill me or lead to more problems in the time I have left.  I was left with a big ditch on my back, which was not explained to me that it would be like this.  This was definitely overdone.  I think it is hard to find someone who will be disinterested if they will also do the surgery.  Maybe this is more true in an independent office than in a big medical institution.

        On this board, my remarks will probably not be in the majority because most are dealing with a more serious situation.  I just didn't know and wasn't given enough information to make an informed decision.

          lou2
          Participant

            I should make it clear that the surgery was preceded by a biopsy.  The problem came with their opinion that surgery was indicated when the biopsy results should have meant a less drastic response.  So maybe the answer for you is to biopsy if you are worried, but research the results so you don't do surgery that is not necessary.

            lou2
            Participant

              I should make it clear that the surgery was preceded by a biopsy.  The problem came with their opinion that surgery was indicated when the biopsy results should have meant a less drastic response.  So maybe the answer for you is to biopsy if you are worried, but research the results so you don't do surgery that is not necessary.

              lou2
              Participant

                I should make it clear that the surgery was preceded by a biopsy.  The problem came with their opinion that surgery was indicated when the biopsy results should have meant a less drastic response.  So maybe the answer for you is to biopsy if you are worried, but research the results so you don't do surgery that is not necessary.

              lou2
              Participant

                The references give names.  Also, here is a report from Science journal on this work.  Do search for full text by using the journal name etc at the bottom.

                 

                Taking aim at regulatory T cells
                Leslie K. Ferrarelli
                Cancer immunotherapy attempts to stimulate the patient's immune system against a tumor, but it can be limited by the suppressive effects of the patient's own regulatory T (Treg) cells. Nie et al. showed that coinhibiting a TNF (tumor necrosis factor) receptor reduced Treg cell activity and proliferation, stimulated antitumor immune memory, and even shrank colon and breast tumors in mice that were unresponsive to common single-agent immunotherapies. Thus, adding anti-TNF therapeutics may help to increase and broaden the efficacy of immunotherapy for cancer patients.

                Sci. Signal. 10, eaan0790 (2018

                lou2
                Participant

                  Sorry, I know you don't want to hear anything against immunotherapy, but not everyone feels this way.  If you want to ignore anyone who wishes for side effects to be part of research and hopefully reduced, then do that.  You have used someone's background to tarnish any effort to improve treatment.  As far as I know, there is no cancer treatment without side effects, some worse than others.  But patients should be told what they are, and improvements should be made.  Unless you think ignorance is preferable.  Choose it for yourself, not others.  Ordinarily I would not speak this way to another sick person, but you were rude and unfair, attacking me for posting what some people would think is common sense about medical treatments.  Maybe this is not a friendly place for sick people and I should leave.

                  lou2
                  Participant

                    Sorry, I know you don't want to hear anything against immunotherapy, but not everyone feels this way.  If you want to ignore anyone who wishes for side effects to be part of research and hopefully reduced, then do that.  You have used someone's background to tarnish any effort to improve treatment.  As far as I know, there is no cancer treatment without side effects, some worse than others.  But patients should be told what they are, and improvements should be made.  Unless you think ignorance is preferable.  Choose it for yourself, not others.  Ordinarily I would not speak this way to another sick person, but you were rude and unfair, attacking me for posting what some people would think is common sense about medical treatments.  Maybe this is not a friendly place for sick people and I should leave.

                    lou2
                    Participant

                      Sorry, I know you don't want to hear anything against immunotherapy, but not everyone feels this way.  If you want to ignore anyone who wishes for side effects to be part of research and hopefully reduced, then do that.  You have used someone's background to tarnish any effort to improve treatment.  As far as I know, there is no cancer treatment without side effects, some worse than others.  But patients should be told what they are, and improvements should be made.  Unless you think ignorance is preferable.  Choose it for yourself, not others.  Ordinarily I would not speak this way to another sick person, but you were rude and unfair, attacking me for posting what some people would think is common sense about medical treatments.  Maybe this is not a friendly place for sick people and I should leave.

                      lou2
                      Participant

                        I am really bothered that you say this author is biased because of his field of study.  Apparently you did not read the article I posted.  Here is a quote "Concerted research efforts to understand the mechanisms of immunotherapy-triggered responses are crucial for developing better treatments."

                        Obviously we need to identify and deal with side effects of cancer therapies.  The article points out that almost known of the trials have as part of the research the undesirable side effects.  Wouldn't you want that to be handled better?

                        I know a woman who had a solid abdominal cancer, not melanoma, that was treated with a cocktail of cancer drugs.  It was apparently cured, but she was left with peripheral neuropathy and other side effects.  Because of the neuropathy, she has no feeling in her toes and it affects her balance.  So, one day this caused her to fall and break bones in her hand and wrist.  Certainly all of us would want to avoid this kind of result from cancer treatment, wouldn't we?

                        lou2
                        Participant

                          I am really bothered that you say this author is biased because of his field of study.  Apparently you did not read the article I posted.  Here is a quote "Concerted research efforts to understand the mechanisms of immunotherapy-triggered responses are crucial for developing better treatments."

                          Obviously we need to identify and deal with side effects of cancer therapies.  The article points out that almost known of the trials have as part of the research the undesirable side effects.  Wouldn't you want that to be handled better?

                          I know a woman who had a solid abdominal cancer, not melanoma, that was treated with a cocktail of cancer drugs.  It was apparently cured, but she was left with peripheral neuropathy and other side effects.  Because of the neuropathy, she has no feeling in her toes and it affects her balance.  So, one day this caused her to fall and break bones in her hand and wrist.  Certainly all of us would want to avoid this kind of result from cancer treatment, wouldn't we?

                          lou2
                          Participant

                            I am really bothered that you say this author is biased because of his field of study.  Apparently you did not read the article I posted.  Here is a quote "Concerted research efforts to understand the mechanisms of immunotherapy-triggered responses are crucial for developing better treatments."

                            Obviously we need to identify and deal with side effects of cancer therapies.  The article points out that almost known of the trials have as part of the research the undesirable side effects.  Wouldn't you want that to be handled better?

                            I know a woman who had a solid abdominal cancer, not melanoma, that was treated with a cocktail of cancer drugs.  It was apparently cured, but she was left with peripheral neuropathy and other side effects.  Because of the neuropathy, she has no feeling in her toes and it affects her balance.  So, one day this caused her to fall and break bones in her hand and wrist.  Certainly all of us would want to avoid this kind of result from cancer treatment, wouldn't we?

                            lou2
                            Participant

                              There are a lot of anonymous posts and I don't think you can expect all people to be able to decipher nefarious intent in published articles.  I think it would be fair to say that many of them have motive.  You probably are mad because you want the "CURE" to be found, and one with no side effects and works for everyone.  Gee, that does sound wonderful.  If only it were true, and true about every medical problem.  But don't take your fear and anxiety out on other patients who are just as scared as you are.

                              Recently there was a Science mag sponsored webinar about immune therapy for cancer, and it was clear that it was not perfect.  Clear because they kept repeating that one of the challenges now was to figure out which patient would be helped by this, and which would not.  Does that tell you something?

                              I would not want to reduce the hope of anyone with this awful cancer, but some of us do want the whole story before we invest our time, money, and whole heart in something.  Do you read all the published articles on melanoma treatment, does anyone before they start a treatment?  I doubt it.  They go to the places that are recommended on this forum and they trust the doctors to tell them the truth about the pro's and cons of treatment.  Some of us do want to know the cons as well.  In the end we all have to make a choice about what to do, how much we want to know.  If you do not want to know, and assume everyone that does tell you the cons has an ulterior motive, then that is your choice.  It is not everyones.  If they don't want to read posts like this, they can just pass it by.

                              lou2
                              Participant

                                There are a lot of anonymous posts and I don't think you can expect all people to be able to decipher nefarious intent in published articles.  I think it would be fair to say that many of them have motive.  You probably are mad because you want the "CURE" to be found, and one with no side effects and works for everyone.  Gee, that does sound wonderful.  If only it were true, and true about every medical problem.  But don't take your fear and anxiety out on other patients who are just as scared as you are.

                                Recently there was a Science mag sponsored webinar about immune therapy for cancer, and it was clear that it was not perfect.  Clear because they kept repeating that one of the challenges now was to figure out which patient would be helped by this, and which would not.  Does that tell you something?

                                I would not want to reduce the hope of anyone with this awful cancer, but some of us do want the whole story before we invest our time, money, and whole heart in something.  Do you read all the published articles on melanoma treatment, does anyone before they start a treatment?  I doubt it.  They go to the places that are recommended on this forum and they trust the doctors to tell them the truth about the pro's and cons of treatment.  Some of us do want to know the cons as well.  In the end we all have to make a choice about what to do, how much we want to know.  If you do not want to know, and assume everyone that does tell you the cons has an ulterior motive, then that is your choice.  It is not everyones.  If they don't want to read posts like this, they can just pass it by.

                                lou2
                                Participant

                                  There are a lot of anonymous posts and I don't think you can expect all people to be able to decipher nefarious intent in published articles.  I think it would be fair to say that many of them have motive.  You probably are mad because you want the "CURE" to be found, and one with no side effects and works for everyone.  Gee, that does sound wonderful.  If only it were true, and true about every medical problem.  But don't take your fear and anxiety out on other patients who are just as scared as you are.

                                  Recently there was a Science mag sponsored webinar about immune therapy for cancer, and it was clear that it was not perfect.  Clear because they kept repeating that one of the challenges now was to figure out which patient would be helped by this, and which would not.  Does that tell you something?

                                  I would not want to reduce the hope of anyone with this awful cancer, but some of us do want the whole story before we invest our time, money, and whole heart in something.  Do you read all the published articles on melanoma treatment, does anyone before they start a treatment?  I doubt it.  They go to the places that are recommended on this forum and they trust the doctors to tell them the truth about the pro's and cons of treatment.  Some of us do want to know the cons as well.  In the end we all have to make a choice about what to do, how much we want to know.  If you do not want to know, and assume everyone that does tell you the cons has an ulterior motive, then that is your choice.  It is not everyones.  If they don't want to read posts like this, they can just pass it by.

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