› Forums › General Melanoma Community › Latest update….recurrence stage III
- This topic has 51 replies, 8 voices, and was last updated 9 years, 5 months ago by
JC.
- Post
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- December 2, 2014 at 3:58 pm
I wanted to write and again say thank you to all those who repsonded to my VERY first post recently.
I had presented my history and current situation…..Now have addtional info and would love to hear any further thoughts.
Got all the scans back and ALL were negative (Brain MRI and CTS of neck, chest, ab, and pelvis)…..so no distant mets, calling it in transmit mets……Only thing is cannot confirm stage IIIB or IIIC, since no way to know about LN……(explained in my first post, I was never able to have a SNB due to cosmetic surgery ….) Even asked again now and was told no way to do any type of LN sampling as everything has been so "rearranged"….so that is why cant confirm IIIb or IIIC…..
I need to have additional surgery for one of the 2 small mets that needs some further excision.
Now, to my question…..I met with MED ONC at NYU yesteray (ana pavllick….loved her)
Since i would be considered NED after upcoming surgery she said she wouldnt treat other than a vaccine trial which i could start in january, and then have close surveillance, scans etc……I am concerned about no treatment and just waiting…..as surgeon at Sloan (dr. Coit) told me it is MORE LIKELY THAN NOT that these recurrences will come back again…..I asked about adjuvant treatment to help prevent recurrences in this setting and sounds like clinical trials are only options….BUT NYU onc said she would not treat now, other than vaccine .
I am seeing Michael Postow at Sloan on thursday and will get his opinion. Surgery is scheduled for saturday.
I was told last year I had a VERY LOW probablitlriy of recurrence based on a1.5 mm melanoma, and now am stage III with intransmit mets….hard to do nothing but wait for this to come back.
Just wondered what others thoughts would be.
This site is invaluable and thanks to all to have been here longer.
- Replies
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- December 2, 2014 at 4:49 pm
Jenny – I wish you the best.
I hope you like Michael Postow as well as I do. He will answer anything for you.
Please do not be afraid of a clinical trial – Many people are alive today because they opted for a trial. Melanoma is one of the cancers cited frequently as success stories in the clinical trials for immune therapy.
I can't remember where I heard it, but one oncologist said (paraphrasing) that there is never a good time to have cancer, but because of the advances in immunotherapy, now is a really good time to have cancer.
You have the right to be optimistic and I am optimistic for you.
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- December 2, 2014 at 7:36 pm
thanks mary-
I really liked Ana pavlick at NYU but am looking forward to seeing micheal postow. All my former treatment and surgery has been at sloan….I just wanted another opinion. It will be interesting to see if his opinion is same or differs from dr. pavlick…in whcih case i will get a 3rd opinion.
I am not afraid of a clinical trial (preferably a phase III trial)…..i think i am more afraid of getting nothing……
So far only thing recommened is vaccine trial, but will see what postow says.
How are you….what was your "story" no profile, but how are you doing?
tks again,
j
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- December 2, 2014 at 7:36 pm
thanks mary-
I really liked Ana pavlick at NYU but am looking forward to seeing micheal postow. All my former treatment and surgery has been at sloan….I just wanted another opinion. It will be interesting to see if his opinion is same or differs from dr. pavlick…in whcih case i will get a 3rd opinion.
I am not afraid of a clinical trial (preferably a phase III trial)…..i think i am more afraid of getting nothing……
So far only thing recommened is vaccine trial, but will see what postow says.
How are you….what was your "story" no profile, but how are you doing?
tks again,
j
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- December 2, 2014 at 8:24 pm
Jenny – I am almost two years post surgery (this month) and have had no recurrence of mucosal melanoma.
The last time I was scanned in August, Dr. Postow called me to tell me that the scans were clear, but even if they had not been clear, there were "many, many things they could try". It is so comforting to me to have someone so positive in my corner.
Another thing to remember about going to a major cancer center is that they determine your treatment by committee decision, so you actually have experts sitting in a room together, talking about the best way to treat you, Jenny.
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- December 2, 2014 at 8:24 pm
Jenny – I am almost two years post surgery (this month) and have had no recurrence of mucosal melanoma.
The last time I was scanned in August, Dr. Postow called me to tell me that the scans were clear, but even if they had not been clear, there were "many, many things they could try". It is so comforting to me to have someone so positive in my corner.
Another thing to remember about going to a major cancer center is that they determine your treatment by committee decision, so you actually have experts sitting in a room together, talking about the best way to treat you, Jenny.
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- December 2, 2014 at 8:24 pm
Jenny – I am almost two years post surgery (this month) and have had no recurrence of mucosal melanoma.
The last time I was scanned in August, Dr. Postow called me to tell me that the scans were clear, but even if they had not been clear, there were "many, many things they could try". It is so comforting to me to have someone so positive in my corner.
Another thing to remember about going to a major cancer center is that they determine your treatment by committee decision, so you actually have experts sitting in a room together, talking about the best way to treat you, Jenny.
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- December 2, 2014 at 9:17 pm
thanks Mary- congrats on your 2 years so far (what stage were you?)……as you know mine came back at 14 months after a 1.5 mm stage 1 so I am a little nervous now that i am now stage III (B or C).
Noted your points regarding major cancer center….that is why i have been at sloan and completely agree with you.
Anxious to see Dr. Postow and what he has to say as compared to Dr. Pavlick at NYU.
Will let you know after i see him thursday….
Surgery is on for Saturday for a little left from one of the recent intransit mets.
tks again for your notes
j
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- December 2, 2014 at 9:17 pm
thanks Mary- congrats on your 2 years so far (what stage were you?)……as you know mine came back at 14 months after a 1.5 mm stage 1 so I am a little nervous now that i am now stage III (B or C).
Noted your points regarding major cancer center….that is why i have been at sloan and completely agree with you.
Anxious to see Dr. Postow and what he has to say as compared to Dr. Pavlick at NYU.
Will let you know after i see him thursday….
Surgery is on for Saturday for a little left from one of the recent intransit mets.
tks again for your notes
j
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- December 2, 2014 at 9:17 pm
thanks Mary- congrats on your 2 years so far (what stage were you?)……as you know mine came back at 14 months after a 1.5 mm stage 1 so I am a little nervous now that i am now stage III (B or C).
Noted your points regarding major cancer center….that is why i have been at sloan and completely agree with you.
Anxious to see Dr. Postow and what he has to say as compared to Dr. Pavlick at NYU.
Will let you know after i see him thursday….
Surgery is on for Saturday for a little left from one of the recent intransit mets.
tks again for your notes
j
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- December 2, 2014 at 7:36 pm
thanks mary-
I really liked Ana pavlick at NYU but am looking forward to seeing micheal postow. All my former treatment and surgery has been at sloan….I just wanted another opinion. It will be interesting to see if his opinion is same or differs from dr. pavlick…in whcih case i will get a 3rd opinion.
I am not afraid of a clinical trial (preferably a phase III trial)…..i think i am more afraid of getting nothing……
So far only thing recommened is vaccine trial, but will see what postow says.
How are you….what was your "story" no profile, but how are you doing?
tks again,
j
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- December 2, 2014 at 4:49 pm
Jenny – I wish you the best.
I hope you like Michael Postow as well as I do. He will answer anything for you.
Please do not be afraid of a clinical trial – Many people are alive today because they opted for a trial. Melanoma is one of the cancers cited frequently as success stories in the clinical trials for immune therapy.
I can't remember where I heard it, but one oncologist said (paraphrasing) that there is never a good time to have cancer, but because of the advances in immunotherapy, now is a really good time to have cancer.
You have the right to be optimistic and I am optimistic for you.
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- December 2, 2014 at 4:49 pm
Jenny – I wish you the best.
I hope you like Michael Postow as well as I do. He will answer anything for you.
Please do not be afraid of a clinical trial – Many people are alive today because they opted for a trial. Melanoma is one of the cancers cited frequently as success stories in the clinical trials for immune therapy.
I can't remember where I heard it, but one oncologist said (paraphrasing) that there is never a good time to have cancer, but because of the advances in immunotherapy, now is a really good time to have cancer.
You have the right to be optimistic and I am optimistic for you.
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- December 2, 2014 at 5:39 pm
I was supposed to see Dr Postow last winter but never could make it because I was almost paralyzed. It sounds like you are good hands. A vaccine trial is treatment. If you read up on it the vaccines they are talking about are different than what we think of vaccines. Also some of those vaccine trials combine it with things like nivo pd-1. So it could be a good thing. Good luck.
Artie
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- December 2, 2014 at 7:38 pm
thanks artie-
i hope you are doing ok…i read your history…..
yes, i know vaccine trial is "something" ….just want to be sure its enough and no one else has any other thoughts.
The fact that mine came back is scary since they all told me i had only about a 3-7% chance it would!!!!!
Tks again, and hope you are doing ok.
best,
j
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- December 2, 2014 at 7:38 pm
thanks artie-
i hope you are doing ok…i read your history…..
yes, i know vaccine trial is "something" ….just want to be sure its enough and no one else has any other thoughts.
The fact that mine came back is scary since they all told me i had only about a 3-7% chance it would!!!!!
Tks again, and hope you are doing ok.
best,
j
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- December 2, 2014 at 7:38 pm
thanks artie-
i hope you are doing ok…i read your history…..
yes, i know vaccine trial is "something" ….just want to be sure its enough and no one else has any other thoughts.
The fact that mine came back is scary since they all told me i had only about a 3-7% chance it would!!!!!
Tks again, and hope you are doing ok.
best,
j
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- December 2, 2014 at 5:39 pm
I was supposed to see Dr Postow last winter but never could make it because I was almost paralyzed. It sounds like you are good hands. A vaccine trial is treatment. If you read up on it the vaccines they are talking about are different than what we think of vaccines. Also some of those vaccine trials combine it with things like nivo pd-1. So it could be a good thing. Good luck.
Artie
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- December 2, 2014 at 5:39 pm
I was supposed to see Dr Postow last winter but never could make it because I was almost paralyzed. It sounds like you are good hands. A vaccine trial is treatment. If you read up on it the vaccines they are talking about are different than what we think of vaccines. Also some of those vaccine trials combine it with things like nivo pd-1. So it could be a good thing. Good luck.
Artie
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- December 3, 2014 at 1:03 am
Hi Jenny
I have been stage 3B since 2004 after 5 years at stage 1A. I skipped ny X-ray in 2013 but will go back in May for another check up. You mentioned a vaccine trial. Back in 2004, I went to UPMC and had a peptide vaccine called Mel-43, developed by Dr Slingoff at UVA. I did go to Dr Pavlick back then but there were no local ttrials open and I did not want interferon so i wondered off to Pittsburgh with Dr Kirkwood.
A few of us that I know in the trial are still NED. My treatemt also consisted of lymph nodes removed in my axilla and high dose radiation to my axilla. Good a pretty good case of lymphedema in my arm as a result
Back then, this site was humming with a vibrant chat room. As soon as I got home from work, I logged on and we had a group always in the room. Not sure what happened here to this site now, but it seems dead to me,
I take some supplements and not sure if they are helping or just creating expensive urine, but I will stay the coarse.
Good luck going forward. Not sure what path is best as there are more options now than back in 2004
Listening now to a Velvet Underground tune called "Rock & Roll" featuring a Jenny as the main character!!
All the best
Mike from NJ
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- December 3, 2014 at 1:03 am
Hi Jenny
I have been stage 3B since 2004 after 5 years at stage 1A. I skipped ny X-ray in 2013 but will go back in May for another check up. You mentioned a vaccine trial. Back in 2004, I went to UPMC and had a peptide vaccine called Mel-43, developed by Dr Slingoff at UVA. I did go to Dr Pavlick back then but there were no local ttrials open and I did not want interferon so i wondered off to Pittsburgh with Dr Kirkwood.
A few of us that I know in the trial are still NED. My treatemt also consisted of lymph nodes removed in my axilla and high dose radiation to my axilla. Good a pretty good case of lymphedema in my arm as a result
Back then, this site was humming with a vibrant chat room. As soon as I got home from work, I logged on and we had a group always in the room. Not sure what happened here to this site now, but it seems dead to me,
I take some supplements and not sure if they are helping or just creating expensive urine, but I will stay the coarse.
Good luck going forward. Not sure what path is best as there are more options now than back in 2004
Listening now to a Velvet Underground tune called "Rock & Roll" featuring a Jenny as the main character!!
All the best
Mike from NJ
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- December 3, 2014 at 1:03 am
Hi Jenny
I have been stage 3B since 2004 after 5 years at stage 1A. I skipped ny X-ray in 2013 but will go back in May for another check up. You mentioned a vaccine trial. Back in 2004, I went to UPMC and had a peptide vaccine called Mel-43, developed by Dr Slingoff at UVA. I did go to Dr Pavlick back then but there were no local ttrials open and I did not want interferon so i wondered off to Pittsburgh with Dr Kirkwood.
A few of us that I know in the trial are still NED. My treatemt also consisted of lymph nodes removed in my axilla and high dose radiation to my axilla. Good a pretty good case of lymphedema in my arm as a result
Back then, this site was humming with a vibrant chat room. As soon as I got home from work, I logged on and we had a group always in the room. Not sure what happened here to this site now, but it seems dead to me,
I take some supplements and not sure if they are helping or just creating expensive urine, but I will stay the coarse.
Good luck going forward. Not sure what path is best as there are more options now than back in 2004
Listening now to a Velvet Underground tune called "Rock & Roll" featuring a Jenny as the main character!!
All the best
Mike from NJ
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- December 3, 2014 at 3:28 am
Hi Mike-
congratulations on 10 years!!! thats great. I wil have to see what Sloan offers, and will compare to what Dr. pavlick suggested, and then may also go elsewhere to be sure i am doing everything possible.
they wont do lymph node sampling due to everyhitng being moved around from the cosmetic surgery, so iwont know for sure what the LN situation is.
Thanks again for your reply…..I will see what dr. postow says on thursday and will post again.
Tks so much,
j
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- December 3, 2014 at 3:28 am
Hi Mike-
congratulations on 10 years!!! thats great. I wil have to see what Sloan offers, and will compare to what Dr. pavlick suggested, and then may also go elsewhere to be sure i am doing everything possible.
they wont do lymph node sampling due to everyhitng being moved around from the cosmetic surgery, so iwont know for sure what the LN situation is.
Thanks again for your reply…..I will see what dr. postow says on thursday and will post again.
Tks so much,
j
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- December 3, 2014 at 3:28 am
Hi Mike-
congratulations on 10 years!!! thats great. I wil have to see what Sloan offers, and will compare to what Dr. pavlick suggested, and then may also go elsewhere to be sure i am doing everything possible.
they wont do lymph node sampling due to everyhitng being moved around from the cosmetic surgery, so iwont know for sure what the LN situation is.
Thanks again for your reply…..I will see what dr. postow says on thursday and will post again.
Tks so much,
j
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- December 3, 2014 at 3:06 am
Hello,
I don't have much to add to the discussion here, but I am also stage 3B and I saw Dr. Postow at Sloan Kettering. I am so glad I made the trip to see him as he spent a lot of time with us and clearly explained all options. I have decided to take the "wait and see" approach, but it isn't an easy approach by any means. I'd definitely consider a clinical trial if one was available for me.
Good luck, and keep us posted.
Best,
Elaine
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- December 3, 2014 at 3:06 am
Hello,
I don't have much to add to the discussion here, but I am also stage 3B and I saw Dr. Postow at Sloan Kettering. I am so glad I made the trip to see him as he spent a lot of time with us and clearly explained all options. I have decided to take the "wait and see" approach, but it isn't an easy approach by any means. I'd definitely consider a clinical trial if one was available for me.
Good luck, and keep us posted.
Best,
Elaine
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- December 3, 2014 at 3:19 am
Hi Jenny, I just wanted to offer a different perspective. Other than Interferon, there aren't any clinically approved treatments for Stage 3, so you would need to find a clinical trial or a doctor willing to prescribe off label. I think it's very difficult to find a doctor to prescribe off label, but I'm fairly certain it's impossible at Sloan. My husband was treated there (not by Dr. Postow, but we did meet him) and his doc was pretty clear that she was held to prescribe standard of care only. Eventually she recommended that we see his local oncologist instead who might have more freedom to prescribe off-label (he did, but that was stage iv).
You might also search clinicaltrials.gov for "adjuvant melanoma" to see what other trials are currently open. I don't know if it's still recruiting, but there was a Phase 1 trial combining vaccines w/ Nivolumab or Ipi which might be worth exploring (Moffitt). Also, there used to be an interferon vs. ipi trial that may still be recruiting. You can always drop out if you are offered interferon.
Best of luck and so sorry..
Donna
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- December 3, 2014 at 3:19 am
Hi Jenny, I just wanted to offer a different perspective. Other than Interferon, there aren't any clinically approved treatments for Stage 3, so you would need to find a clinical trial or a doctor willing to prescribe off label. I think it's very difficult to find a doctor to prescribe off label, but I'm fairly certain it's impossible at Sloan. My husband was treated there (not by Dr. Postow, but we did meet him) and his doc was pretty clear that she was held to prescribe standard of care only. Eventually she recommended that we see his local oncologist instead who might have more freedom to prescribe off-label (he did, but that was stage iv).
You might also search clinicaltrials.gov for "adjuvant melanoma" to see what other trials are currently open. I don't know if it's still recruiting, but there was a Phase 1 trial combining vaccines w/ Nivolumab or Ipi which might be worth exploring (Moffitt). Also, there used to be an interferon vs. ipi trial that may still be recruiting. You can always drop out if you are offered interferon.
Best of luck and so sorry..
Donna
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- December 3, 2014 at 3:19 am
Hi Jenny, I just wanted to offer a different perspective. Other than Interferon, there aren't any clinically approved treatments for Stage 3, so you would need to find a clinical trial or a doctor willing to prescribe off label. I think it's very difficult to find a doctor to prescribe off label, but I'm fairly certain it's impossible at Sloan. My husband was treated there (not by Dr. Postow, but we did meet him) and his doc was pretty clear that she was held to prescribe standard of care only. Eventually she recommended that we see his local oncologist instead who might have more freedom to prescribe off-label (he did, but that was stage iv).
You might also search clinicaltrials.gov for "adjuvant melanoma" to see what other trials are currently open. I don't know if it's still recruiting, but there was a Phase 1 trial combining vaccines w/ Nivolumab or Ipi which might be worth exploring (Moffitt). Also, there used to be an interferon vs. ipi trial that may still be recruiting. You can always drop out if you are offered interferon.
Best of luck and so sorry..
Donna
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- December 3, 2014 at 3:24 am
hi Donna,
thanks so much for your reply. I have done exactly what you mention and searched for trails in the adjvant setting…i found the same one at Moffitt…..I will aks about all options at Sloan and if need be will go wherever i have to.
Thanks agian, and will post more after i see Dr. postow.
how is your husband doing?
best,
j
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- December 3, 2014 at 3:24 am
hi Donna,
thanks so much for your reply. I have done exactly what you mention and searched for trails in the adjvant setting…i found the same one at Moffitt…..I will aks about all options at Sloan and if need be will go wherever i have to.
Thanks agian, and will post more after i see Dr. postow.
how is your husband doing?
best,
j
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- December 3, 2014 at 3:24 am
hi Donna,
thanks so much for your reply. I have done exactly what you mention and searched for trails in the adjvant setting…i found the same one at Moffitt…..I will aks about all options at Sloan and if need be will go wherever i have to.
Thanks agian, and will post more after i see Dr. postow.
how is your husband doing?
best,
j
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- December 3, 2014 at 3:20 am
hi elaine- thanks for your reply…..how long since you've been 3B? Were there no trial availbe at Slaon or just none for you in general? I am worried I will hear the same, and I dont think I can do the wathc and wait…..
anxious to hear what he'll have to offer.
Thanks again….i so appreiciate all the replies as this is such a scary time!
best,
j
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- December 3, 2014 at 3:20 am
hi elaine- thanks for your reply…..how long since you've been 3B? Were there no trial availbe at Slaon or just none for you in general? I am worried I will hear the same, and I dont think I can do the wathc and wait…..
anxious to hear what he'll have to offer.
Thanks again….i so appreiciate all the replies as this is such a scary time!
best,
j
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- December 3, 2014 at 3:20 am
hi elaine- thanks for your reply…..how long since you've been 3B? Were there no trial availbe at Slaon or just none for you in general? I am worried I will hear the same, and I dont think I can do the wathc and wait…..
anxious to hear what he'll have to offer.
Thanks again….i so appreiciate all the replies as this is such a scary time!
best,
j
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- December 3, 2014 at 3:06 am
Hello,
I don't have much to add to the discussion here, but I am also stage 3B and I saw Dr. Postow at Sloan Kettering. I am so glad I made the trip to see him as he spent a lot of time with us and clearly explained all options. I have decided to take the "wait and see" approach, but it isn't an easy approach by any means. I'd definitely consider a clinical trial if one was available for me.
Good luck, and keep us posted.
Best,
Elaine
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- December 3, 2014 at 8:34 pm
Hi Jenny,
I had my WLE / SLNB on July 10th for what appeared to be a 1B melanoma. My one node came back slightly positive. My doctor here in Chicago didn't love my pathology results and felt I should have another lab look at them, so I went to Memorial Sloan Kettering. Doctor Postow called me T1bN1a, or 3B. He told me that MSK is a "no interferon" institution and he explained to me that because interferon is not a cure, and because it comes with serious and potentially long-term negative negative effects, that it isn't the right course of action. As for the node dissection, for me in my situation, he felt it was better to leave my nodes intact as there was such a small amount of melanoma in my node. Again, he said that the dissection isn't a cure and it comes with difficult long-term effects for some people.
In spite of the fact that I fully agree with all of this information (and I do!), I still find it difficult to "do nothing". I know I'm not the only one who feels that way.
By the way, I saw Dr. Postow in October, but I saw my Loyola oncologist yesterday. I asked him what he feels my risk of recurrence is. He said he feels it's 15-20%.
I would definitely consider an adjuvant clinical trial if there was one available. Dr. Postow said there wasn't anything that applied to me at the current moment.
If you hear something interesting, I'd love to know more about it.
All the best,
Elaine
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- December 3, 2014 at 8:34 pm
Hi Jenny,
I had my WLE / SLNB on July 10th for what appeared to be a 1B melanoma. My one node came back slightly positive. My doctor here in Chicago didn't love my pathology results and felt I should have another lab look at them, so I went to Memorial Sloan Kettering. Doctor Postow called me T1bN1a, or 3B. He told me that MSK is a "no interferon" institution and he explained to me that because interferon is not a cure, and because it comes with serious and potentially long-term negative negative effects, that it isn't the right course of action. As for the node dissection, for me in my situation, he felt it was better to leave my nodes intact as there was such a small amount of melanoma in my node. Again, he said that the dissection isn't a cure and it comes with difficult long-term effects for some people.
In spite of the fact that I fully agree with all of this information (and I do!), I still find it difficult to "do nothing". I know I'm not the only one who feels that way.
By the way, I saw Dr. Postow in October, but I saw my Loyola oncologist yesterday. I asked him what he feels my risk of recurrence is. He said he feels it's 15-20%.
I would definitely consider an adjuvant clinical trial if there was one available. Dr. Postow said there wasn't anything that applied to me at the current moment.
If you hear something interesting, I'd love to know more about it.
All the best,
Elaine
-
- December 3, 2014 at 8:34 pm
Hi Jenny,
I had my WLE / SLNB on July 10th for what appeared to be a 1B melanoma. My one node came back slightly positive. My doctor here in Chicago didn't love my pathology results and felt I should have another lab look at them, so I went to Memorial Sloan Kettering. Doctor Postow called me T1bN1a, or 3B. He told me that MSK is a "no interferon" institution and he explained to me that because interferon is not a cure, and because it comes with serious and potentially long-term negative negative effects, that it isn't the right course of action. As for the node dissection, for me in my situation, he felt it was better to leave my nodes intact as there was such a small amount of melanoma in my node. Again, he said that the dissection isn't a cure and it comes with difficult long-term effects for some people.
In spite of the fact that I fully agree with all of this information (and I do!), I still find it difficult to "do nothing". I know I'm not the only one who feels that way.
By the way, I saw Dr. Postow in October, but I saw my Loyola oncologist yesterday. I asked him what he feels my risk of recurrence is. He said he feels it's 15-20%.
I would definitely consider an adjuvant clinical trial if there was one available. Dr. Postow said there wasn't anything that applied to me at the current moment.
If you hear something interesting, I'd love to know more about it.
All the best,
Elaine
-
- December 4, 2014 at 3:36 am
For stage 3 patients of which i am one as well if you are not in a trial there are options rather than just wait and see.
You can be proactive by doing some things for yourself.
Lifestyle changes, supplements, exercise, diet and some interesting therapies that have some solid background like hyperthermia.
Supplements like green tea extract ,curcumin, selenium, vit d , flaxseed oil, pacreatic enzymes, mistletoe avamer IP6 beta glucans, organic phyto greens..
Detox including colonics, liver flushes, daily enemas, skin brushing, juice fast
There are also a number of off label drugs that are worth considering taking like: cimeditine, celebrex, metformin, tamoxifen.
I guess the point i am making is wait and see doesnt mean that you should do nothing. Statistically the majority of stage 3 patients eventually becoome stage 4 so you should do whatever you can in your powers to avoid that.
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- December 4, 2014 at 2:13 pm
Hi Squash,
Thanks for the reminder that we can do more than "just" wait. I'm interested to learn more about what you said about statistics. You said "majority" of 3s become 4s. I asked my oncologist what my odds of recurrence were, statistically speaking, and he said for stage 3b, "15-20%". I wish I had a source to look at, because I like to pin things down.
Does anybody have a hard source for rates of recurrence?
Thanks,
Elaine
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- December 4, 2014 at 2:13 pm
Hi Squash,
Thanks for the reminder that we can do more than "just" wait. I'm interested to learn more about what you said about statistics. You said "majority" of 3s become 4s. I asked my oncologist what my odds of recurrence were, statistically speaking, and he said for stage 3b, "15-20%". I wish I had a source to look at, because I like to pin things down.
Does anybody have a hard source for rates of recurrence?
Thanks,
Elaine
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- December 4, 2014 at 2:13 pm
Hi Squash,
Thanks for the reminder that we can do more than "just" wait. I'm interested to learn more about what you said about statistics. You said "majority" of 3s become 4s. I asked my oncologist what my odds of recurrence were, statistically speaking, and he said for stage 3b, "15-20%". I wish I had a source to look at, because I like to pin things down.
Does anybody have a hard source for rates of recurrence?
Thanks,
Elaine
-
- December 4, 2014 at 3:36 am
For stage 3 patients of which i am one as well if you are not in a trial there are options rather than just wait and see.
You can be proactive by doing some things for yourself.
Lifestyle changes, supplements, exercise, diet and some interesting therapies that have some solid background like hyperthermia.
Supplements like green tea extract ,curcumin, selenium, vit d , flaxseed oil, pacreatic enzymes, mistletoe avamer IP6 beta glucans, organic phyto greens..
Detox including colonics, liver flushes, daily enemas, skin brushing, juice fast
There are also a number of off label drugs that are worth considering taking like: cimeditine, celebrex, metformin, tamoxifen.
I guess the point i am making is wait and see doesnt mean that you should do nothing. Statistically the majority of stage 3 patients eventually becoome stage 4 so you should do whatever you can in your powers to avoid that.
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- December 4, 2014 at 3:36 am
For stage 3 patients of which i am one as well if you are not in a trial there are options rather than just wait and see.
You can be proactive by doing some things for yourself.
Lifestyle changes, supplements, exercise, diet and some interesting therapies that have some solid background like hyperthermia.
Supplements like green tea extract ,curcumin, selenium, vit d , flaxseed oil, pacreatic enzymes, mistletoe avamer IP6 beta glucans, organic phyto greens..
Detox including colonics, liver flushes, daily enemas, skin brushing, juice fast
There are also a number of off label drugs that are worth considering taking like: cimeditine, celebrex, metformin, tamoxifen.
I guess the point i am making is wait and see doesnt mean that you should do nothing. Statistically the majority of stage 3 patients eventually becoome stage 4 so you should do whatever you can in your powers to avoid that.
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