› Forums › Cutaneous Melanoma Community › Have Insight or Advice for new stage 3
- This topic has 45 replies, 7 voices, and was last updated 9 years ago by
tmelanio.
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- May 26, 2015 at 4:41 am
In great health at 67 and retired in the rural community of Nalcrest, Polk County, Florida, I chose the cheapest advantage plan I could find, saving over $300 a month over my previous plan which I suspended. I can always go back or choose a better palan during open season.
Because my plan does not authorize routine skin check-ups, my PCP picked a random blemish to be checked out by a participating dermatologist. On February 11, 2015, his nurse found a suspicious spot elsewhere on my right forearm. I got a call right away that it was melanoma. Oblivious, I thought nothing of it.
On March 2, I was shocked at how much the dermatologist cut away for such a small speck, but soon afterward I got a call that the margins were too small and that I had stage 2 melanoma.
The earliest available appointment was April 21 for one of only two oncology surgeons at the Lakeland Regional Cancer Center which is approved by the Commission on Cancer. He said he would perform a wide excision and remove 2 lymph nodes. The earliest he could do it was May 7.
My plan requires all testing to be routed through my PCP, a round-about way apparently foreign to everybody. I personally had to play phone tag between the Cancer Center, my PCP, and health plan to clear up repeated miscommunications and misunderstandings before my pre-op testing was approved. Labcorp and ATR waiting rooms were full and obviously low income.
Right up to the afternoon before my scheduled May 7 surgery, I was assured that I would get an automated call informing me of what time to show up. Just after 5 PM I received the automated call informing me to check in 2 hours before my 2:05 PM surgery.
May 7, 10:30 AM, I received a call asking why I wasn't there for a 10:00 AM procedure for which a medical team was waiting. When I told her about the automated call she apologized – a nurse was supposed to have called me.
My girlfriend, Julie, was told that she could accompany me every step of the way. However, she was left in a room to which I was to return. She was forgotten for over an hour and a half until a nurse came by and asked what she was doing in there. She was told the surgery would last 2 hours so she went to the hospital cafeteria to eat. The surgery was over in 40 minutes and she missed speaking personally with the surgeon.
Immediately before the surgery, a kid came by with some papers to sign. I was hooked up on the gurney wearing nothing but the gown and of course I didn't have my glasses. On retrospect I believe it was giving him permission to insert the breathing tube for the anaesthesia. Afterward I had a miserably raw throat and was coughing up gobs of green phlgm for 3 weeks. It hurt to swallow. I read online that this is preventable and is dependent upon the skill and technique of the anaesthetist.
The follow-up was on May 18 with a nurse practitioner in lieu of the vacationing surgeon. She balked twice before answering my question. Julie burst into tears when she said one of my lymph nodes tested positive. I asked what next and she replied, "Chemo". I asked how much cancer was in the positive lymph node and after looking at her clipboard, replied, "I don't know". She reiterated the surgeon's assertion that he would take out all my lymph nodes should one test positive. She prescribed a PET scan and brain MRI. She scheduled my next appointment with her since the surgeon was fully booked for the month. June 2 was chosen because he would be in a nearby wing and she might be able to get him to drop by.
Again I played phone tag trying to get approval for the PET scan. May 21, on my way to the mobile unit, I received a call informing me that it would have to be rescheduled because it had not been approved yet. From my car I made a couple of calls clearing some blatant miscommunications before she called back with an Okay.
Yahoo! The PET scan is negative. I would have not known until long after Memorial Day had I not called and insisted. However, I learned some perhaps dated info that PET scans have trouble detecting cancer that is less than 8 cm, which seems awfully big to me. How accurate are they?
Cancer.net states that the survival rate is the same for patients who elect not to have lymph nodes removed, and that because of this, many patients choose to leave them alone to avoid probable complications for life. Immunotherapy does not increase lifespan, and even with chemo and lymph node removal, recurrence is 27%. Are there any stats for watch and wait?
Brain MRI scans are not available in Lakeland until the middle of June, so I am having one in Plant City May 28. If that is negative also, am I considered NED?
I have gone cold turkey and removed sugar and processed foods from my diet. Eating as much as I want, I now consume foods which strengthen the immune system and I am losing weight.
I feel like my June 2 appointment with the nurse is doc-in- the-box assembly line care. I know I need a melanoma specialist. I am long registered to receive care from any Veteran's Hospital in the country. Open season to change plans is at year's end.
Any insight or advice would be sweet. Thank you.
- Replies
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- May 26, 2015 at 6:37 am
Check into clinical trials. You will see a melanoma specialist they can run interferance with your insurance company for the most part and much of what you will get is "free care".
And tell your friends not to skimp on insurance. It doesn't pay when things like this happen and you never know when it will. 🙁
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- May 26, 2015 at 6:37 am
Check into clinical trials. You will see a melanoma specialist they can run interferance with your insurance company for the most part and much of what you will get is "free care".
And tell your friends not to skimp on insurance. It doesn't pay when things like this happen and you never know when it will. 🙁
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- May 26, 2015 at 6:37 am
Check into clinical trials. You will see a melanoma specialist they can run interferance with your insurance company for the most part and much of what you will get is "free care".
And tell your friends not to skimp on insurance. It doesn't pay when things like this happen and you never know when it will. 🙁
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- May 26, 2015 at 1:46 pm
Pet scans show spots that attract the glucose. Thus the brain and some other spots always show hot. Thus the need for a head mri. Yes pet scans may not show hot enough for smaller spots. It just depends. Also some docs will interpret the pet significantly different than other docs. It's kind of like an art as well as a science. I've had like 8 pet scans and lots of mri and cts.
It sounds like you've been through a lot over quite awhile though. You really need a melanoma specialist who knows the urgency of melanoma so you get things done sooner.
I have no idea where you heard that about immunotherapy. The truth is quite opposite I would think. I know I wouldn't be here if it wasn't for pd1. That's one of the immunotherapies called Keytruda and another called opdivo.
For stage 3 you really should get into the trial where you get either Yervoy or pd1. In Florida is dr weber at mofffitt . One of the best melanoma docs in the world. Also in Houston is md anderson. Both are the best places if I were you I would pick one and go.
Melanoma is very serious stuff especially when it goes beyond stage 1. So at stage 3 you really need a doc on your side that knows the stuff and has a sense of urgency. I've been stage 4 since day 1 on June 21 2013.
For diet make sure you get the protein. As close to natural as you can without the processing and preservatives like you said is the way to go. Also exercise like walking is good.
Artie
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- May 26, 2015 at 3:44 pm
Thank you so much for your reply.
From other threads it appears that to qualify for a trial the melanoma has to be more advanced. The nurse said I am Stage 3 N1 which she indicated is the lowest. I will inquire all the same, although I am leaning toward observation/close surveillance.
It appears that my surgeon's nurse is in the Stone Age, having told me chemo is the next step.
Sorry, I mixed up immunotherapies – I read that interferon does not improve survival and makes you miserable.
I checked out pd1, keytrudo, and opdivo – they all appear to be used only after everything else has failed, and shows improvement in 30% of patients taking it, which seems low to me. Again, trial studies want a higher stage 3. Observation/surveillance appears more attractive at this point.
Cancer.net states that removal of the remaining lymph nodes after one positive has no effect on survival, and that because of this, many patients leave them alone to prevent probable life-long complications. What do you think? I value your opinion.
Thank you so much for your advice. I am going to follow it. Moffitt sounds great, although I may not qualify for a trial. Open season is far away, but – any suggestions?
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- May 26, 2015 at 3:44 pm
Thank you so much for your reply.
From other threads it appears that to qualify for a trial the melanoma has to be more advanced. The nurse said I am Stage 3 N1 which she indicated is the lowest. I will inquire all the same, although I am leaning toward observation/close surveillance.
It appears that my surgeon's nurse is in the Stone Age, having told me chemo is the next step.
Sorry, I mixed up immunotherapies – I read that interferon does not improve survival and makes you miserable.
I checked out pd1, keytrudo, and opdivo – they all appear to be used only after everything else has failed, and shows improvement in 30% of patients taking it, which seems low to me. Again, trial studies want a higher stage 3. Observation/surveillance appears more attractive at this point.
Cancer.net states that removal of the remaining lymph nodes after one positive has no effect on survival, and that because of this, many patients leave them alone to prevent probable life-long complications. What do you think? I value your opinion.
Thank you so much for your advice. I am going to follow it. Moffitt sounds great, although I may not qualify for a trial. Open season is far away, but – any suggestions?
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- May 26, 2015 at 6:07 pm
I'm at stage IIIC. I've been stage III ever since I was diagnosed in January 2013. I had the surgery, the lymph node biopsy, and because of micro-metastases in one node I had the lymph node dissection. It hasn't been too bad. The worst parts have been the fact that I'm left handed, and thanks to the surgeon having to cut a nerve, the back of my left arm and my armpit area are now permanently numb, and I wanted to get a new tattoo on my left forearm, but was told by my wife, an RN, not to.
My melanoma came back last summer, I had more surgery. My first scan after surgery found likely metasases in several places including one in a lung. I say "likely" because they were too small to light up on the PET scan.
I had given interferon a try after my first go-round, but it made me so sick that the potential benefits weren't worth it. When the scan last fall found the new mets, I started treatment with Yervoy. I know that 30% response for immunotherapy sounds low, but if you respond, you get up to 100% better. I was at least a partial responder. My scan in February indicated no change in the lesion on my lung, or any other internal lesions that were identified on the scan from last November. I have several spots on my skin near the site of the surgeries, but Dr. Sharfman, at Johns Hopkins, thinks I could get a delayed response, due to my apparent at least partial response. I just had another scan last week. I don't see the oncologist until June 17. They had to change my appointment from tomorrow for some reason.
I hear what you're saying about insurance. The good news is that now, thanks to the ACA, you can get insurance that will cover more of your costs, without having to worry about your "pre-existing condition." I've been lucky. I'm a state of Delaware retiree, and I have good coverage. I always took it for granted until I got the EOB that showed that Blue Cross had paid over $147,000 to the cancer center for my Yervoy treatment, and my cost was zero.
My best wishes to you, that you will get effective treatment, and you'll be around to post here for years to come!
Bill
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- May 26, 2015 at 6:07 pm
I'm at stage IIIC. I've been stage III ever since I was diagnosed in January 2013. I had the surgery, the lymph node biopsy, and because of micro-metastases in one node I had the lymph node dissection. It hasn't been too bad. The worst parts have been the fact that I'm left handed, and thanks to the surgeon having to cut a nerve, the back of my left arm and my armpit area are now permanently numb, and I wanted to get a new tattoo on my left forearm, but was told by my wife, an RN, not to.
My melanoma came back last summer, I had more surgery. My first scan after surgery found likely metasases in several places including one in a lung. I say "likely" because they were too small to light up on the PET scan.
I had given interferon a try after my first go-round, but it made me so sick that the potential benefits weren't worth it. When the scan last fall found the new mets, I started treatment with Yervoy. I know that 30% response for immunotherapy sounds low, but if you respond, you get up to 100% better. I was at least a partial responder. My scan in February indicated no change in the lesion on my lung, or any other internal lesions that were identified on the scan from last November. I have several spots on my skin near the site of the surgeries, but Dr. Sharfman, at Johns Hopkins, thinks I could get a delayed response, due to my apparent at least partial response. I just had another scan last week. I don't see the oncologist until June 17. They had to change my appointment from tomorrow for some reason.
I hear what you're saying about insurance. The good news is that now, thanks to the ACA, you can get insurance that will cover more of your costs, without having to worry about your "pre-existing condition." I've been lucky. I'm a state of Delaware retiree, and I have good coverage. I always took it for granted until I got the EOB that showed that Blue Cross had paid over $147,000 to the cancer center for my Yervoy treatment, and my cost was zero.
My best wishes to you, that you will get effective treatment, and you'll be around to post here for years to come!
Bill
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- May 26, 2015 at 6:07 pm
I'm at stage IIIC. I've been stage III ever since I was diagnosed in January 2013. I had the surgery, the lymph node biopsy, and because of micro-metastases in one node I had the lymph node dissection. It hasn't been too bad. The worst parts have been the fact that I'm left handed, and thanks to the surgeon having to cut a nerve, the back of my left arm and my armpit area are now permanently numb, and I wanted to get a new tattoo on my left forearm, but was told by my wife, an RN, not to.
My melanoma came back last summer, I had more surgery. My first scan after surgery found likely metasases in several places including one in a lung. I say "likely" because they were too small to light up on the PET scan.
I had given interferon a try after my first go-round, but it made me so sick that the potential benefits weren't worth it. When the scan last fall found the new mets, I started treatment with Yervoy. I know that 30% response for immunotherapy sounds low, but if you respond, you get up to 100% better. I was at least a partial responder. My scan in February indicated no change in the lesion on my lung, or any other internal lesions that were identified on the scan from last November. I have several spots on my skin near the site of the surgeries, but Dr. Sharfman, at Johns Hopkins, thinks I could get a delayed response, due to my apparent at least partial response. I just had another scan last week. I don't see the oncologist until June 17. They had to change my appointment from tomorrow for some reason.
I hear what you're saying about insurance. The good news is that now, thanks to the ACA, you can get insurance that will cover more of your costs, without having to worry about your "pre-existing condition." I've been lucky. I'm a state of Delaware retiree, and I have good coverage. I always took it for granted until I got the EOB that showed that Blue Cross had paid over $147,000 to the cancer center for my Yervoy treatment, and my cost was zero.
My best wishes to you, that you will get effective treatment, and you'll be around to post here for years to come!
Bill
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- May 27, 2015 at 12:21 am
I have no idea about the surgery. If you can see dr weber at mofitt you should do good with his guidance.
Artie
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- May 27, 2015 at 12:21 am
I have no idea about the surgery. If you can see dr weber at mofitt you should do good with his guidance.
Artie
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- May 27, 2015 at 2:10 am
I do not think you,have too "low"' of a stage 3 to get in a clinical trial. Go see dr Weber at Moffit in Tampa. My husband has Medicare advantage in,California through kaiser and had nothing like what you went through. You should complain to MediCare also.
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- May 27, 2015 at 2:10 am
I do not think you,have too "low"' of a stage 3 to get in a clinical trial. Go see dr Weber at Moffit in Tampa. My husband has Medicare advantage in,California through kaiser and had nothing like what you went through. You should complain to MediCare also.
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- May 27, 2015 at 2:10 am
I do not think you,have too "low"' of a stage 3 to get in a clinical trial. Go see dr Weber at Moffit in Tampa. My husband has Medicare advantage in,California through kaiser and had nothing like what you went through. You should complain to MediCare also.
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- May 27, 2015 at 12:21 am
I have no idea about the surgery. If you can see dr weber at mofitt you should do good with his guidance.
Artie
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- May 26, 2015 at 3:44 pm
Thank you so much for your reply.
From other threads it appears that to qualify for a trial the melanoma has to be more advanced. The nurse said I am Stage 3 N1 which she indicated is the lowest. I will inquire all the same, although I am leaning toward observation/close surveillance.
It appears that my surgeon's nurse is in the Stone Age, having told me chemo is the next step.
Sorry, I mixed up immunotherapies – I read that interferon does not improve survival and makes you miserable.
I checked out pd1, keytrudo, and opdivo – they all appear to be used only after everything else has failed, and shows improvement in 30% of patients taking it, which seems low to me. Again, trial studies want a higher stage 3. Observation/surveillance appears more attractive at this point.
Cancer.net states that removal of the remaining lymph nodes after one positive has no effect on survival, and that because of this, many patients leave them alone to prevent probable life-long complications. What do you think? I value your opinion.
Thank you so much for your advice. I am going to follow it. Moffitt sounds great, although I may not qualify for a trial. Open season is far away, but – any suggestions?
-
- May 26, 2015 at 1:46 pm
Pet scans show spots that attract the glucose. Thus the brain and some other spots always show hot. Thus the need for a head mri. Yes pet scans may not show hot enough for smaller spots. It just depends. Also some docs will interpret the pet significantly different than other docs. It's kind of like an art as well as a science. I've had like 8 pet scans and lots of mri and cts.
It sounds like you've been through a lot over quite awhile though. You really need a melanoma specialist who knows the urgency of melanoma so you get things done sooner.
I have no idea where you heard that about immunotherapy. The truth is quite opposite I would think. I know I wouldn't be here if it wasn't for pd1. That's one of the immunotherapies called Keytruda and another called opdivo.
For stage 3 you really should get into the trial where you get either Yervoy or pd1. In Florida is dr weber at mofffitt . One of the best melanoma docs in the world. Also in Houston is md anderson. Both are the best places if I were you I would pick one and go.
Melanoma is very serious stuff especially when it goes beyond stage 1. So at stage 3 you really need a doc on your side that knows the stuff and has a sense of urgency. I've been stage 4 since day 1 on June 21 2013.
For diet make sure you get the protein. As close to natural as you can without the processing and preservatives like you said is the way to go. Also exercise like walking is good.
Artie
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- May 26, 2015 at 1:46 pm
Pet scans show spots that attract the glucose. Thus the brain and some other spots always show hot. Thus the need for a head mri. Yes pet scans may not show hot enough for smaller spots. It just depends. Also some docs will interpret the pet significantly different than other docs. It's kind of like an art as well as a science. I've had like 8 pet scans and lots of mri and cts.
It sounds like you've been through a lot over quite awhile though. You really need a melanoma specialist who knows the urgency of melanoma so you get things done sooner.
I have no idea where you heard that about immunotherapy. The truth is quite opposite I would think. I know I wouldn't be here if it wasn't for pd1. That's one of the immunotherapies called Keytruda and another called opdivo.
For stage 3 you really should get into the trial where you get either Yervoy or pd1. In Florida is dr weber at mofffitt . One of the best melanoma docs in the world. Also in Houston is md anderson. Both are the best places if I were you I would pick one and go.
Melanoma is very serious stuff especially when it goes beyond stage 1. So at stage 3 you really need a doc on your side that knows the stuff and has a sense of urgency. I've been stage 4 since day 1 on June 21 2013.
For diet make sure you get the protein. As close to natural as you can without the processing and preservatives like you said is the way to go. Also exercise like walking is good.
Artie
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- May 27, 2015 at 2:31 am
Tmelanio,
You have been through a lot in a short amount of time..but sadly you have many things you have to learn and decide quickly. Artie and others have given you sound advice. It seems as though you had a sentinel node biopsy but I'm not sure you had a complete lyphadenopathy of the other nodes in the area. That is something you will have to decide whether you wish to do or not. It is a personal decision…some opt to do so and some do not. Here is some information that may be important to you: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/lymph-node-removal-after-superficial.html
Technically, interferon is categorized as immunotherapy. However, it is tough to withstand and has long been proven to provide no additional survival benefit. New immunotherapies are very different….Ipilimumab (Yervoy) and anti-PD1 (2 products: nivolumab/opdivo and pembrolizumab/keytruda) provide much better results with fewer side effects. As sad as the 30% sounds to you (and IS!) it is ever so much more than melanoma patients had available to them as treatment options as recently as 2010. Trust me. I've been riding this horse since 2003.
As a matter of fact, there ARE clinical trials available to NED (also call adjuvant treatments) patients stage III/IV: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/03/new-ipi-vs-nivo-trial-for-resected.html
Trials have many different requirements…so it is tricky finding one in which you fit. Watching and waiting is also an option.
Two other folks recently diagnosed as stage III have made posts below. If you scroll down you will see their postings and the advice they were given may benefit you as well. I echo what you have been told in that a melanoma specialist is essential in order to acquire the care and advice you need. I wish you my best. Celeste
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- May 27, 2015 at 11:00 am
It is becoming obvious that the best and fastest way to become educated is through forums like this one. Thank you so much for the links. I read both several times.
So much appears to be a crap shoot and that your best bets are the ones with the best odds. Low odds are often the only options.
In the link concerning lypadenopathy, those who had it had an increased surviuval rate 10% higher with intermediate lesions and 6% higher for those with thick ones, which makes sense – the bigger the cancer, the more likely it is to spread. I have read so much that I often cannot remember sources, but I read somewhere that if the melanoma found in the sentinel lymph node is under a certain size, that it is unlikely to spread. In this study, all the lesions were big – no reference is made to microspopic lesions. A general oncologist, like mine, will automatically do a lypadenopathy in a routine followed for melanoma – which is why I need a melanoma specialist. I need to press harder to find out how much melanoma was in my sentinel lymph node and not accept another "I don't know" from his nurse.
I have learned that sugar fuels cancer and weakens the immune system so I have purged it from my diet. Although I was an utter sugar junkie and glutton and drank only heavily sweetened beverages instead of water, it has been easy for me to change – it is now poison and I am not going to consume it. Although I had headaches and fatigue at first, my taste buds have become tuned in and are surprisingly pleasured by all natural unprocessed foods which enhance the immune system and my general health. There are doctors who advocate this diet in a holistic approach, claiming that it actually starves cancer cells. I have not seen this supported by any clinical studies, but it makes sense. What do you think?
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- May 27, 2015 at 11:00 am
It is becoming obvious that the best and fastest way to become educated is through forums like this one. Thank you so much for the links. I read both several times.
So much appears to be a crap shoot and that your best bets are the ones with the best odds. Low odds are often the only options.
In the link concerning lypadenopathy, those who had it had an increased surviuval rate 10% higher with intermediate lesions and 6% higher for those with thick ones, which makes sense – the bigger the cancer, the more likely it is to spread. I have read so much that I often cannot remember sources, but I read somewhere that if the melanoma found in the sentinel lymph node is under a certain size, that it is unlikely to spread. In this study, all the lesions were big – no reference is made to microspopic lesions. A general oncologist, like mine, will automatically do a lypadenopathy in a routine followed for melanoma – which is why I need a melanoma specialist. I need to press harder to find out how much melanoma was in my sentinel lymph node and not accept another "I don't know" from his nurse.
I have learned that sugar fuels cancer and weakens the immune system so I have purged it from my diet. Although I was an utter sugar junkie and glutton and drank only heavily sweetened beverages instead of water, it has been easy for me to change – it is now poison and I am not going to consume it. Although I had headaches and fatigue at first, my taste buds have become tuned in and are surprisingly pleasured by all natural unprocessed foods which enhance the immune system and my general health. There are doctors who advocate this diet in a holistic approach, claiming that it actually starves cancer cells. I have not seen this supported by any clinical studies, but it makes sense. What do you think?
-
- May 27, 2015 at 11:00 am
It is becoming obvious that the best and fastest way to become educated is through forums like this one. Thank you so much for the links. I read both several times.
So much appears to be a crap shoot and that your best bets are the ones with the best odds. Low odds are often the only options.
In the link concerning lypadenopathy, those who had it had an increased surviuval rate 10% higher with intermediate lesions and 6% higher for those with thick ones, which makes sense – the bigger the cancer, the more likely it is to spread. I have read so much that I often cannot remember sources, but I read somewhere that if the melanoma found in the sentinel lymph node is under a certain size, that it is unlikely to spread. In this study, all the lesions were big – no reference is made to microspopic lesions. A general oncologist, like mine, will automatically do a lypadenopathy in a routine followed for melanoma – which is why I need a melanoma specialist. I need to press harder to find out how much melanoma was in my sentinel lymph node and not accept another "I don't know" from his nurse.
I have learned that sugar fuels cancer and weakens the immune system so I have purged it from my diet. Although I was an utter sugar junkie and glutton and drank only heavily sweetened beverages instead of water, it has been easy for me to change – it is now poison and I am not going to consume it. Although I had headaches and fatigue at first, my taste buds have become tuned in and are surprisingly pleasured by all natural unprocessed foods which enhance the immune system and my general health. There are doctors who advocate this diet in a holistic approach, claiming that it actually starves cancer cells. I have not seen this supported by any clinical studies, but it makes sense. What do you think?
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- May 27, 2015 at 12:54 pm
Yes, you have picked up on one thing quickly! Crap shoot it is!!! Some folks in your position have additional lymph nodes in the same bed as the positive one return all negative and never hear from melanoma again in any way. However, there are others who experience a very different scenario. Clearly, this does not help one in making decisions, given we are working without personal crystal balls!!!
Diet is a very contentious issue….on this board and generally. First disclaimer: I have always been a runner and something of a health nut. I have never been over weight. I don't even like sweets! (Pasta and cheese…another matter!!!) I am a pediatric provider who believes whole heartedly that children will be healthier adults if they eat mostly fruits and vegetables with little or no junk or sugary drinks. I know adults will be heathier if they do the same. I am a huge advocate for diet and exercise…for everyone. BUT….everything we eat is changed to glucose. It is the only thing our cells can use for energy. I think a healthy diet will benefit you. However, if the solution were that simple….we could all cure cancer, now couldn't we?? Many folks have jumped on the "Eat this/not this and Cure Cancer" band wagon. Sadly, most often to make money off of desperate souls. Here are some related posts: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/01/better-diet-advice-for-melanoma_13.html
This one has all kinds of "data" on all the things that "cure melanoma"!!! http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/04/everything-kills-melanomatake-4.html
Curcumin….helpful? Maybe? http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/for-melanomaeat-that-curryagain-we-just.html
So…good luck with all that. c
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- May 27, 2015 at 12:54 pm
Yes, you have picked up on one thing quickly! Crap shoot it is!!! Some folks in your position have additional lymph nodes in the same bed as the positive one return all negative and never hear from melanoma again in any way. However, there are others who experience a very different scenario. Clearly, this does not help one in making decisions, given we are working without personal crystal balls!!!
Diet is a very contentious issue….on this board and generally. First disclaimer: I have always been a runner and something of a health nut. I have never been over weight. I don't even like sweets! (Pasta and cheese…another matter!!!) I am a pediatric provider who believes whole heartedly that children will be healthier adults if they eat mostly fruits and vegetables with little or no junk or sugary drinks. I know adults will be heathier if they do the same. I am a huge advocate for diet and exercise…for everyone. BUT….everything we eat is changed to glucose. It is the only thing our cells can use for energy. I think a healthy diet will benefit you. However, if the solution were that simple….we could all cure cancer, now couldn't we?? Many folks have jumped on the "Eat this/not this and Cure Cancer" band wagon. Sadly, most often to make money off of desperate souls. Here are some related posts: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/01/better-diet-advice-for-melanoma_13.html
This one has all kinds of "data" on all the things that "cure melanoma"!!! http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/04/everything-kills-melanomatake-4.html
Curcumin….helpful? Maybe? http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/for-melanomaeat-that-curryagain-we-just.html
So…good luck with all that. c
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- May 28, 2015 at 11:15 am
Thank you for your enlightening reply. I must admit that I realized if treatment was that simple, it would make headlines. But I was hoping someone might steer me toward clinical studies or have experience where diet made a difference. It appears that there are no clinical studies probably because of a glaring reality – zealously healthy people get it and it may still progress. And so far no one here has related experiences where diet made a positive difference – the opposite is true.
At 5"11" and 206 pounds since retiring 6 years ago, I am sticking with my diet simply to be healthy and lose down to a target weight of maybe 185. Eating as much as I want, I am down to 198 since starting it 2 weeks ago. Julie doesn't want me to lose too much because she says it will make me look older – wrinkles. I am also exercising more recreationally – no gym. I hope to get the 6-pack back which I lost after retiring.
Melanoma will always gobble up more glucose than healthy cells. Does anyone know if a weight loss diet will temporarily slow its growth?
Thanks.
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- May 30, 2015 at 7:06 am
I switched from a junk food diet to a healthy one once I was diagnosed (no sugar, no carbs – essentially Paleo). I lost 40 pounds over a 9 month period. During that time, my two largest tumors grew only 2 mm each. The other two were unchanged. After my weight stabilized, all tumors began growing more quickly. This may have just been a coincidence. But that's what happened in my case.
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- May 30, 2015 at 7:06 am
I switched from a junk food diet to a healthy one once I was diagnosed (no sugar, no carbs – essentially Paleo). I lost 40 pounds over a 9 month period. During that time, my two largest tumors grew only 2 mm each. The other two were unchanged. After my weight stabilized, all tumors began growing more quickly. This may have just been a coincidence. But that's what happened in my case.
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- May 30, 2015 at 7:06 am
I switched from a junk food diet to a healthy one once I was diagnosed (no sugar, no carbs – essentially Paleo). I lost 40 pounds over a 9 month period. During that time, my two largest tumors grew only 2 mm each. The other two were unchanged. After my weight stabilized, all tumors began growing more quickly. This may have just been a coincidence. But that's what happened in my case.
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- May 28, 2015 at 11:15 am
Thank you for your enlightening reply. I must admit that I realized if treatment was that simple, it would make headlines. But I was hoping someone might steer me toward clinical studies or have experience where diet made a difference. It appears that there are no clinical studies probably because of a glaring reality – zealously healthy people get it and it may still progress. And so far no one here has related experiences where diet made a positive difference – the opposite is true.
At 5"11" and 206 pounds since retiring 6 years ago, I am sticking with my diet simply to be healthy and lose down to a target weight of maybe 185. Eating as much as I want, I am down to 198 since starting it 2 weeks ago. Julie doesn't want me to lose too much because she says it will make me look older – wrinkles. I am also exercising more recreationally – no gym. I hope to get the 6-pack back which I lost after retiring.
Melanoma will always gobble up more glucose than healthy cells. Does anyone know if a weight loss diet will temporarily slow its growth?
Thanks.
-
- May 28, 2015 at 11:15 am
Thank you for your enlightening reply. I must admit that I realized if treatment was that simple, it would make headlines. But I was hoping someone might steer me toward clinical studies or have experience where diet made a difference. It appears that there are no clinical studies probably because of a glaring reality – zealously healthy people get it and it may still progress. And so far no one here has related experiences where diet made a positive difference – the opposite is true.
At 5"11" and 206 pounds since retiring 6 years ago, I am sticking with my diet simply to be healthy and lose down to a target weight of maybe 185. Eating as much as I want, I am down to 198 since starting it 2 weeks ago. Julie doesn't want me to lose too much because she says it will make me look older – wrinkles. I am also exercising more recreationally – no gym. I hope to get the 6-pack back which I lost after retiring.
Melanoma will always gobble up more glucose than healthy cells. Does anyone know if a weight loss diet will temporarily slow its growth?
Thanks.
-
- May 27, 2015 at 12:54 pm
Yes, you have picked up on one thing quickly! Crap shoot it is!!! Some folks in your position have additional lymph nodes in the same bed as the positive one return all negative and never hear from melanoma again in any way. However, there are others who experience a very different scenario. Clearly, this does not help one in making decisions, given we are working without personal crystal balls!!!
Diet is a very contentious issue….on this board and generally. First disclaimer: I have always been a runner and something of a health nut. I have never been over weight. I don't even like sweets! (Pasta and cheese…another matter!!!) I am a pediatric provider who believes whole heartedly that children will be healthier adults if they eat mostly fruits and vegetables with little or no junk or sugary drinks. I know adults will be heathier if they do the same. I am a huge advocate for diet and exercise…for everyone. BUT….everything we eat is changed to glucose. It is the only thing our cells can use for energy. I think a healthy diet will benefit you. However, if the solution were that simple….we could all cure cancer, now couldn't we?? Many folks have jumped on the "Eat this/not this and Cure Cancer" band wagon. Sadly, most often to make money off of desperate souls. Here are some related posts: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/01/better-diet-advice-for-melanoma_13.html
This one has all kinds of "data" on all the things that "cure melanoma"!!! http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/04/everything-kills-melanomatake-4.html
Curcumin….helpful? Maybe? http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/for-melanomaeat-that-curryagain-we-just.html
So…good luck with all that. c
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- May 27, 2015 at 11:05 pm
Your body needs some sugar though. You have to feed your good cells. I get my sugar from fruits and natural fruit juices. Quite the opposite of the liter of soda I drank a day before this disease.
Artie
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- May 27, 2015 at 11:05 pm
Your body needs some sugar though. You have to feed your good cells. I get my sugar from fruits and natural fruit juices. Quite the opposite of the liter of soda I drank a day before this disease.
Artie
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- May 27, 2015 at 11:05 pm
Your body needs some sugar though. You have to feed your good cells. I get my sugar from fruits and natural fruit juices. Quite the opposite of the liter of soda I drank a day before this disease.
Artie
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- May 28, 2015 at 10:33 am
I was just told by my significant other that I got something wrong on the study on lypadenopathy. I thought it was the size of the melanoma in the positive sentinel lymph node that determines the probability of it spreading to other lymph nodes. She says it is the size of the melanoma at the original site. I think she is right. The study refers to "lesions" – melanoma in lymph nodes is probably called something else. Can anyone clarify?
If that is the case, 1.91 mm is my magic number for determining probability. The study refers to "intermediate" and "thick" lesions ("thick" being the largest of the two) with neither being defined. Can anyone link me to a definition?
Also – are lymph nodes the only way melanoma spreads?
Damn – you guys are sharp! I hope to get there too.
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- May 28, 2015 at 12:24 pm
No, lymph transit is not the only way melanoma spreads. Julie is correct regarding the article you mentioned. Perhaps this will help: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/04/with-melanoma-you-can-never-be-too-rich.html c
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- May 28, 2015 at 12:24 pm
No, lymph transit is not the only way melanoma spreads. Julie is correct regarding the article you mentioned. Perhaps this will help: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/04/with-melanoma-you-can-never-be-too-rich.html c
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- May 28, 2015 at 12:24 pm
No, lymph transit is not the only way melanoma spreads. Julie is correct regarding the article you mentioned. Perhaps this will help: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/04/with-melanoma-you-can-never-be-too-rich.html c
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- May 28, 2015 at 10:33 am
I was just told by my significant other that I got something wrong on the study on lypadenopathy. I thought it was the size of the melanoma in the positive sentinel lymph node that determines the probability of it spreading to other lymph nodes. She says it is the size of the melanoma at the original site. I think she is right. The study refers to "lesions" – melanoma in lymph nodes is probably called something else. Can anyone clarify?
If that is the case, 1.91 mm is my magic number for determining probability. The study refers to "intermediate" and "thick" lesions ("thick" being the largest of the two) with neither being defined. Can anyone link me to a definition?
Also – are lymph nodes the only way melanoma spreads?
Damn – you guys are sharp! I hope to get there too.
-
- May 28, 2015 at 10:33 am
I was just told by my significant other that I got something wrong on the study on lypadenopathy. I thought it was the size of the melanoma in the positive sentinel lymph node that determines the probability of it spreading to other lymph nodes. She says it is the size of the melanoma at the original site. I think she is right. The study refers to "lesions" – melanoma in lymph nodes is probably called something else. Can anyone clarify?
If that is the case, 1.91 mm is my magic number for determining probability. The study refers to "intermediate" and "thick" lesions ("thick" being the largest of the two) with neither being defined. Can anyone link me to a definition?
Also – are lymph nodes the only way melanoma spreads?
Damn – you guys are sharp! I hope to get there too.
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- May 27, 2015 at 2:31 am
Tmelanio,
You have been through a lot in a short amount of time..but sadly you have many things you have to learn and decide quickly. Artie and others have given you sound advice. It seems as though you had a sentinel node biopsy but I'm not sure you had a complete lyphadenopathy of the other nodes in the area. That is something you will have to decide whether you wish to do or not. It is a personal decision…some opt to do so and some do not. Here is some information that may be important to you: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/lymph-node-removal-after-superficial.html
Technically, interferon is categorized as immunotherapy. However, it is tough to withstand and has long been proven to provide no additional survival benefit. New immunotherapies are very different….Ipilimumab (Yervoy) and anti-PD1 (2 products: nivolumab/opdivo and pembrolizumab/keytruda) provide much better results with fewer side effects. As sad as the 30% sounds to you (and IS!) it is ever so much more than melanoma patients had available to them as treatment options as recently as 2010. Trust me. I've been riding this horse since 2003.
As a matter of fact, there ARE clinical trials available to NED (also call adjuvant treatments) patients stage III/IV: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/03/new-ipi-vs-nivo-trial-for-resected.html
Trials have many different requirements…so it is tricky finding one in which you fit. Watching and waiting is also an option.
Two other folks recently diagnosed as stage III have made posts below. If you scroll down you will see their postings and the advice they were given may benefit you as well. I echo what you have been told in that a melanoma specialist is essential in order to acquire the care and advice you need. I wish you my best. Celeste
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- May 27, 2015 at 2:31 am
Tmelanio,
You have been through a lot in a short amount of time..but sadly you have many things you have to learn and decide quickly. Artie and others have given you sound advice. It seems as though you had a sentinel node biopsy but I'm not sure you had a complete lyphadenopathy of the other nodes in the area. That is something you will have to decide whether you wish to do or not. It is a personal decision…some opt to do so and some do not. Here is some information that may be important to you: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/lymph-node-removal-after-superficial.html
Technically, interferon is categorized as immunotherapy. However, it is tough to withstand and has long been proven to provide no additional survival benefit. New immunotherapies are very different….Ipilimumab (Yervoy) and anti-PD1 (2 products: nivolumab/opdivo and pembrolizumab/keytruda) provide much better results with fewer side effects. As sad as the 30% sounds to you (and IS!) it is ever so much more than melanoma patients had available to them as treatment options as recently as 2010. Trust me. I've been riding this horse since 2003.
As a matter of fact, there ARE clinical trials available to NED (also call adjuvant treatments) patients stage III/IV: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/03/new-ipi-vs-nivo-trial-for-resected.html
Trials have many different requirements…so it is tricky finding one in which you fit. Watching and waiting is also an option.
Two other folks recently diagnosed as stage III have made posts below. If you scroll down you will see their postings and the advice they were given may benefit you as well. I echo what you have been told in that a melanoma specialist is essential in order to acquire the care and advice you need. I wish you my best. Celeste
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Tagged: cutaneous melanoma
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