My father has Stage 4 Melanoma...

Shomzy

My father has been diagnosed with Stage 4 melanoma. He has been on immunotherapy for the past few months. There has been no change in the tumors in any of the catscans. Now they found more cancer cells on his face and in his lymph nodes(?)My father wants to continue with the therapy because that is what the doctor suggests. I want to know if there is any other studies or therapys that any one else has tried and had success with at his Stage. Every thing I look at is very grim and vague. His oncologist is telling us to hope and pray but not giving us any real information on his chances of surving this. My sister overheard one of the doctors speaking of my father after the last catscan. The doctor said that he looked like he had about six months. Now we don't know what to think. Between what we read online and this and the fact that it's been spreading- what do you do? Is it worth him continuing this therapy? He didn't become sick until after starting this treatment. So the quality of his life is crap because he is so sick from the shots he gets every week. If he is indeed dying shouldn't they say something?

Sher82051

I also have Clark's Level IV Melanoma, and because research is all so new on this cancer, there are very few treatments. The fact that your father wants to continue the treatments is all you think of now. It is his hope, and to terminate them because they may not help will be doing him no good. Treatments are very difficult, and his wanting to continue them is his way of fighting the disease. All you can do is be there for him and support his decision now. I too have done my research on the computer, and yes, the news isn't good, but I'm not giving up either, just as he isn't. God bless you all. Sherrie

blujae

I know it has been a while since you posted your message, but I have been surviving cancer now for 9 months and there is one thing I know. The doctors do not like to discuss timelines, but if you pin them down and be blunt they will. It is of utmost importance for you to be armed with reality and not have info sugar coated, no matter how hard the info is to swallow. Treatments are not for everyone and depending on age, stage, and type of cancer, prognosis plays a huge part in the decisions. I hope you read this and it helps. I have a horribly rare cancer that they say will kill me. Only 250 worldwide, in the past 20 years are known to have this kind of melanoma and no one survives it. I intend to prove them wrong. Post another message and let me know how things are going. Good luck with this new year. Jan

NoelleS

blujae said:

I know it has been a while since you posted your message, but I have been surviving cancer now for 9 months and there is one thing I know. The doctors do not like to discuss timelines, but if you pin them down and be blunt they will. It is of utmost importance for you to be armed with reality and not have info sugar coated, no matter how hard the info is to swallow. Treatments are not for everyone and depending on age, stage, and type of cancer, prognosis plays a huge part in the decisions. I hope you read this and it helps. I have a horribly rare cancer that they say will kill me. Only 250 worldwide, in the past 20 years are known to have this kind of melanoma and no one survives it. I intend to prove them wrong. Post another message and let me know how things are going. Good luck with this new year. Jan

My husband has stage 4 melanoma. We're doing our best to maintain positive. The pain problem is the biggest obstacle to that, however. I don't think doctors should give "timelines." You hear tons of stories of people told they had X amount of time who prove the doctors wrong. And, Andrew Weil says those kinds of prognostications can actually work like voodoo -- ie, the power of suggestion! They shouldn't sugar coat the news, but they also shouldn't presume that they can see the future, because it's been proven that they simply can't. The attitude of the person involved is a factor, and I can tell you that my husband's doctor simply doesn't know my husband. We've only seen him maybe 3 times, and he just doesn't know the kind of people we are. So he doesn't know all the factors involved, now does he?

KentuckyBrad

Has anyone talked to you or your Father about High-Dose Interleukin2 immunotherapy?

I have already undergone 6 treatment cycles and currently have acheived a 50% reduction in my Stage IV metastasizing melanoma, located in over 3 dozen locations thru my torso, heavy in spleen, close to heart enough to form fluid on the heart, and had moved aggressively onto my right lung.

I now am looking at probably only 2 more cycles, ending in May'04 and will PET scan in June to confirm a "Clear".

I would be only to happy to talk to you or your Father about this -- the results are strong and now have at least 3 years successful history with other melanoma victims.

God Bless and Godspeed!

Brad Houts
brad.houts@verizon.net

lcyates

NoelleS said:

My husband has stage 4 melanoma. We're doing our best to maintain positive. The pain problem is the biggest obstacle to that, however. I don't think doctors should give "timelines." You hear tons of stories of people told they had X amount of time who prove the doctors wrong. And, Andrew Weil says those kinds of prognostications can actually work like voodoo -- ie, the power of suggestion! They shouldn't sugar coat the news, but they also shouldn't presume that they can see the future, because it's been proven that they simply can't. The attitude of the person involved is a factor, and I can tell you that my husband's doctor simply doesn't know my husband. We've only seen him maybe 3 times, and he just doesn't know the kind of people we are. So he doesn't know all the factors involved, now does he?

Amen to that Noelle!!

RCDolmaker

My husband was diagnosed with stage IV melanoma 8 years ago. He has long surpassed what the doctor's gave him to live. My husband works everyday and we look at his cancer as just another part of our lives. When something shows up we deal with it. My husbands first tumor was in a lymph node in his neck, then his left lung (the lower lobe was removed), then two on his back, then 3 brain tumors, then one under his left arm and again one on his back. All of these were metasticised. We have never known where the orginal tumor was located. I have made it my responsiblity to learn about melanoma, and yes it's scary. But knowledge is like armor. I immediately sought out the best doctors within driving distance. We travel over 150 miles to see the specialist at UCLA Medical Center. My husband has also been fortunate to participate in 4 different research programs. These programs usually work on increasing his ability to fight the cancer cells. In the beginning my husband was only given 1 year to live. We figure we've cheated death for 7 years and we are still going strong. I do advocate prayer, this can make a difference and make the doctors give you knowledge. I have suprised many doctors, they think I'm in the medical field, but I'm not. But I know a lot about melanoma.

Good Luck!!

cjm

RCDolmaker said:

My husband was diagnosed with stage IV melanoma 8 years ago. He has long surpassed what the doctor's gave him to live. My husband works everyday and we look at his cancer as just another part of our lives. When something shows up we deal with it. My husbands first tumor was in a lymph node in his neck, then his left lung (the lower lobe was removed), then two on his back, then 3 brain tumors, then one under his left arm and again one on his back. All of these were metasticised. We have never known where the orginal tumor was located. I have made it my responsiblity to learn about melanoma, and yes it's scary. But knowledge is like armor. I immediately sought out the best doctors within driving distance. We travel over 150 miles to see the specialist at UCLA Medical Center. My husband has also been fortunate to participate in 4 different research programs. These programs usually work on increasing his ability to fight the cancer cells. In the beginning my husband was only given 1 year to live. We figure we've cheated death for 7 years and we are still going strong. I do advocate prayer, this can make a difference and make the doctors give you knowledge. I have suprised many doctors, they think I'm in the medical field, but I'm not. But I know a lot about melanoma.

Good Luck!!

My mother was recently diagnosed with stage IV metastatic melanoma. All the studies of treatments can be very conflicting. None of the #'s are great. She is 73 and has lumps showing up under her skin on a near daily basis. She also has lumps that have showed up on a CT scan including 1 nodule in her lung. Her doctors say that her cancer can't be cured and that immunotherapy is not an effective treatment of metastatic melanoma. Immunotherapy sounds like such a rugged and long course and I don't think she's up to it even if we pushed for it. However you'll read some patient stories on the Proleukin website of patients who have been in stage IV and treated with Proleukin and have not had a recurrence for many years. It's hard to know if they are just the very small percentage of people who get a complete repsonse. What do you think?

Marquardt

RCDolmaker said:

My husband was diagnosed with stage IV melanoma 8 years ago. He has long surpassed what the doctor's gave him to live. My husband works everyday and we look at his cancer as just another part of our lives. When something shows up we deal with it. My husbands first tumor was in a lymph node in his neck, then his left lung (the lower lobe was removed), then two on his back, then 3 brain tumors, then one under his left arm and again one on his back. All of these were metasticised. We have never known where the orginal tumor was located. I have made it my responsiblity to learn about melanoma, and yes it's scary. But knowledge is like armor. I immediately sought out the best doctors within driving distance. We travel over 150 miles to see the specialist at UCLA Medical Center. My husband has also been fortunate to participate in 4 different research programs. These programs usually work on increasing his ability to fight the cancer cells. In the beginning my husband was only given 1 year to live. We figure we've cheated death for 7 years and we are still going strong. I do advocate prayer, this can make a difference and make the doctors give you knowledge. I have suprised many doctors, they think I'm in the medical field, but I'm not. But I know a lot about melanoma.

Good Luck!!

This is my first time replying to this Cancer Survivors Network. In 1993, I had my first bout with melanoma it was on the back side of my knee, left leg. For 10 years I had no reaccurences. Then last year, it came back twice (upper left leg - 4 inch tumor and lower abdomen). At first they put me on Interferon, but after six months they had to take me off, as I developed spots behind my retina that would/could cause you to go blinde. Basically the oncologist told me he didn't have anything else for melanoma and I am now, participating in a clinical trial in Wisconsin. In this clinical trial you have a 25% change of getting a placebo. Desperately, I wanted to talk to someone else that had melanoma, as I feel so alone.

rainynyte

RCDolmaker said:

My husband was diagnosed with stage IV melanoma 8 years ago. He has long surpassed what the doctor's gave him to live. My husband works everyday and we look at his cancer as just another part of our lives. When something shows up we deal with it. My husbands first tumor was in a lymph node in his neck, then his left lung (the lower lobe was removed), then two on his back, then 3 brain tumors, then one under his left arm and again one on his back. All of these were metasticised. We have never known where the orginal tumor was located. I have made it my responsiblity to learn about melanoma, and yes it's scary. But knowledge is like armor. I immediately sought out the best doctors within driving distance. We travel over 150 miles to see the specialist at UCLA Medical Center. My husband has also been fortunate to participate in 4 different research programs. These programs usually work on increasing his ability to fight the cancer cells. In the beginning my husband was only given 1 year to live. We figure we've cheated death for 7 years and we are still going strong. I do advocate prayer, this can make a difference and make the doctors give you knowledge. I have suprised many doctors, they think I'm in the medical field, but I'm not. But I know a lot about melanoma.

Good Luck!!

We just found out my fiance has Melanoma, Clark's Level at least IV and at least 6mm deep. He had a mole removed that had changed rapidly and started to bleed when bumped. We go to the oncoligist (sp?) next week but can you help me understand any of this before we go?

Unknown

This comment has been removed by the Moderator

auntie r

your father has cancer--maybe some suggestions
My heart and prayers go out to you.

Dr. Patrick Quillin wrote a cancer nutrition book my family and friends have found helpful and encouraging, and I hope your father may as well. It offers suggestions on how and what to eat to build a powerful immune system to battle the cancer, and build up the body during the treatment. The book is "Beating Cancer With Nutrition." It has a CD so that those patients who aren't feeling well enough to read can hear his suggestions. People who were told, basically, go home and give up, either improved and extended their life-spans, or beat the disease. The mini-case histories he includes are uplifting and inspiring. I highly recommend it.

Quillin was on staff at the Cancer Centers of America. A nutritionist told my family member she thought highly of Quillin's book. It discusses the importance of nutrition, avoiding cancer spurs like sugar and nitrates/nitrites (and much more), and how to eat things that inspire cancer death (berries, maitake mushrooms, tumeric, etc., etc.).

I'm not medically trained, so I can't give medically meaningful feedback on what Quillin says. From the research I have done to check out his assertions, however, the book seems grounded and reliable. I encourage you to check into it as well.


Another thing that I've read helps (and also was recommended by this nutritionist) was fermented wheat germ. It's supposed to help with side effects from various treatments for cancer. Not easy to find, but it's out there. One of the names i found for it was "Avemar." Expensive stuff. But sounds like it does a lot of good for people. ($200/mo. seemed common when I checked the internet for prices.)

I wish you and your father, and every cancer patient on this site, good luck in the battle.

jbrown1966

auntie r said:

your father has cancer--maybe some suggestions
My heart and prayers go out to you.

Dr. Patrick Quillin wrote a cancer nutrition book my family and friends have found helpful and encouraging, and I hope your father may as well. It offers suggestions on how and what to eat to build a powerful immune system to battle the cancer, and build up the body during the treatment. The book is "Beating Cancer With Nutrition." It has a CD so that those patients who aren't feeling well enough to read can hear his suggestions. People who were told, basically, go home and give up, either improved and extended their life-spans, or beat the disease. The mini-case histories he includes are uplifting and inspiring. I highly recommend it.

Quillin was on staff at the Cancer Centers of America. A nutritionist told my family member she thought highly of Quillin's book. It discusses the importance of nutrition, avoiding cancer spurs like sugar and nitrates/nitrites (and much more), and how to eat things that inspire cancer death (berries, maitake mushrooms, tumeric, etc., etc.).

I'm not medically trained, so I can't give medically meaningful feedback on what Quillin says. From the research I have done to check out his assertions, however, the book seems grounded and reliable. I encourage you to check into it as well.


Another thing that I've read helps (and also was recommended by this nutritionist) was fermented wheat germ. It's supposed to help with side effects from various treatments for cancer. Not easy to find, but it's out there. One of the names i found for it was "Avemar." Expensive stuff. But sounds like it does a lot of good for people. ($200/mo. seemed common when I checked the internet for prices.)

I wish you and your father, and every cancer patient on this site, good luck in the battle.

My Survivor Story
I was diagnosed with stage III Melanoma in November 2003. I myself have taken a year of interferon treatment and also have had 5 surgeries to battle this disease. I have taken radiation treatments and chemotherapy and also a new experimental treatment in New Orleans, LA. at Oshner Hospital. Three years ago my diagnosis was upgraded to stage 4. Right now I am almost 3 years cancer free. It's a long hard road, but it can be beat. My doctor told me that 99.9% of a cure was for me to stay positive and focused. That's exactly what I have done and I'm still here. Please do not quit fighting because LIFE is worth living.

Katya

blujae said:

I know it has been a while since you posted your message, but I have been surviving cancer now for 9 months and there is one thing I know. The doctors do not like to discuss timelines, but if you pin them down and be blunt they will. It is of utmost importance for you to be armed with reality and not have info sugar coated, no matter how hard the info is to swallow. Treatments are not for everyone and depending on age, stage, and type of cancer, prognosis plays a huge part in the decisions. I hope you read this and it helps. I have a horribly rare cancer that they say will kill me. Only 250 worldwide, in the past 20 years are known to have this kind of melanoma and no one survives it. I intend to prove them wrong. Post another message and let me know how things are going. Good luck with this new year. Jan

Surviving melanoma
I hope you get this. Is it desmoplastic melanoma you have? I was recently diagnosed, and wondering what to expect after surgery. Thank you. I hope you are well.

CajunEagle

Katya said:

Surviving melanoma
I hope you get this. Is it desmoplastic melanoma you have? I was recently diagnosed, and wondering what to expect after surgery. Thank you. I hope you are well.

I'm not sure....

why folks respond to a subject and thread that is over 14 years old.  If you have a question, or want to discuss,  start a new thread.

pattypink

immunotherapy

I am new diagnosed with melanoma...I had a sentinel lymph node biopsy and also wide excision ...came back positive...scheduled appt with oncologist and he recommends immunotherapy...what does anyone know about side effects??

WW2vet

cjm said:

My mother was recently diagnosed with stage IV metastatic melanoma. All the studies of treatments can be very conflicting. None of the #'s are great. She is 73 and has lumps showing up under her skin on a near daily basis. She also has lumps that have showed up on a CT scan including 1 nodule in her lung. Her doctors say that her cancer can't be cured and that immunotherapy is not an effective treatment of metastatic melanoma. Immunotherapy sounds like such a rugged and long course and I don't think she's up to it even if we pushed for it. However you'll read some patient stories on the Proleukin website of patients who have been in stage IV and treated with Proleukin and have not had a recurrence for many years. It's hard to know if they are just the very small percentage of people who get a complete repsonse. What do you think?

Stage 4 Melanoma

Hello CJM,  I'm 97  & had a stage 4 wound surgerically removed from arm which all tests showed negative for wound & lympth nodes but a small cell(s) must have gotten by & formed a tumor in my lung & armpit a fe months later  I feel this caught early & with just 3 does of chemo the tumors were elinaminated. Five additional does were given for good measure and then 18 has just finished of immune therphy monthly infusion.  All PET & CT & heart scans & 2 tests of 20 pages of blood work show all clear & normal & stable. I suffer from fatigue...It's very tiring.  Good strength but only for about 2 minutes.  Sitting is good, Other minor effects. Ice cream & ginger ale help.  Warm wishes & happy to help answer any questions.

WW2vet

rainynyte said:

We just found out my fiance has Melanoma, Clark's Level at least IV and at least 6mm deep. He had a mole removed that had changed rapidly and started to bleed when bumped. We go to the oncoligist (sp?) next week but can you help me understand any of this before we go?

Stage 4 Melanonma

Hello Rainynyte,  It's great it was caught early.  I'm 97 & fairly good health.  About 2 yrs. ago I had a wound on my arm that was a stage 4 melanoma.  It was removed with 2 lympth which biospies showed negative. However a cell(s) must have slipped by the nodes & formed a stage 4 tumor in my kung & armpit just a few months later.  It took just 3 doses of chemo to clear them plus 5 more just for good measure,  Followed up with 18 months of monthly immune infusion theraphy which was just finished in May, 2021.  The chemo has caused me to suffer quite a bit of fatigue from the onset & continues. This the #1 complaint. Some other lesser side effects. The immune theraphy doesn't help. Sitting & lying is better than being up. Tireness continues but does cycle somewhat sometimes in just an hour's time. Excercise & activity is important though.  Strength is very good but short lived...about 2 minutes long. Ice cream & ginger ale helps with appetite. By all means after the wound is cured get a follow up body screening in a very few months.  I had 2 Onecologist to tell me I didn't need one the 3rd one said I did & found the tumors early.  With warmest wishes & ask me with anything that I may be able to help with.  

WW2vet

pattypink said:

immunotherapy

I am new diagnosed with melanoma...I had a sentinel lymph node biopsy and also wide excision ...came back positive...scheduled appt with oncologist and he recommends immunotherapy...what does anyone know about side effects??

Immunotherapy

I had 8 doees of chemo followed up with 18 months of monthly infusion theraphy which I just finished in May, 2021.  It seems to contribute s bit (sometimes delayed a few days) to the fatigue syndrone thae the chemo causes.  Be advised I had a wound removed with 2 lympth nodes which biospies were all negative but medical science cannot detect a small cell(s) slipping by the lympth nodes and forming tumors elsewhere in the body. So by all means have a follow up CT or PET scans. I even had 2 oncologists advise me that I didn't need a scan.  A third doctor advised a PET scan which showed the 2 early tumors in the lung & armpit. I stronly suggest the scan. My thinking the chemo may be in order with the immunetherphy.if there are tumors elsewhere in the body. Early detection is vital.  Warmest wishes & advise if I can help further.