Any metastatic melanoma survivors?

shumba

yalleh said:

Heloo ihatemelanoma
My course of treatment is the entire gamet and all the tricks in the book known to Oncologists. I started off with an 8 inch skin removal on my back as wells as all the lymph nodes in my arm pit (from stage 2 to 3). I did 1 month of high dose Interferon followed by 12 months of the inject yourself every second day (this was Stage 3 Melanoma). The tests came back clear with no Melanoma for almost a year after Interferon. It was then found that I had progressed to stage 4, so I become a lab rat for a new trial chemotherapy. After 3 months it showed no progress so I did biochemotherapy along with 3 other known Melanoma chemotherapies (IL-2 + abraxane, decarpozine and one other ). The tumors showed no more progression but it also had not gone away. SO I stayed on Abraxane and decarpazine in the hopes that we could contain the tumors in my hilar lymph node and my upper right lung. We would then remove the lung and lymph node. The tumors did not stay contained, they were now spread all over the lungs and throughout the body (but not the brain). I then went on another trial (which by the way is the one that is working but was not approved by the FDA because it has not shown high enough success). After three months it had further progressed and was now in the brain. I was taken off the trail so that I could get stereotactic raditation in the brain. I had to wait a month (off of treatment) before I could get the radiation on three tumors. So I did the radiation (at which time I now had 5 tumors in the brain but they could only work on three of them). I was then was tested again a month later. This time it showed that the tumors operated on were stable and the other two had gone away. I was then rushed back on the trial that looked like it worked and now here I am.

I'm sorry to say that I cant say I have beat it, I still have tumors in my lungs, brain and throughout the body, but I can say I'm in a much better position than I was almost a year ago.

I can tell you that what helped my wife more than anything is to focus her energy on something positive. She did a walk to raise money for melanoma (the website is AIM for Melanoma). I would also suggest (coming from the side of the person with cancer) that you live in the moment, spend as much positive time with your Nana as possible and if you can only spend a little time with her make sure it is good time for both of you. I know I had to shoulder the burden of many family members and its not fun or easy to do. I know I really appreciated a smiling face and a good joke (even if the joke was at my expense.. not sure if your Nana wants you to make fun or tease her).

Hopefully this helps and good luck for you and your loved ones

hi yellah
sorry about your
hi yellah
sorry about your condition,your story is simarlar to my wifes,she had a melanoma removed from her back 4years ago it was huge as it was misdiagnosed as a cyst,2 yrs ago she had a section of her intestine removed as it had colapsed,a melanoma was found inside{again missed}she now has them in her lung and liver and had 2 tumors removed from her brain on the 17/12/09 ,we find out what further treatment is needed this week,what interests me is the treatments you received as up until now they have only monitered her condition,and surgically removed the tumors,did you insist on them or were they offered to you,please let me know if anything has really helped,
keep on fighting and good luck

Misdiag1Fauq

shumba said:

hi yellah
sorry about your
hi yellah
sorry about your condition,your story is simarlar to my wifes,she had a melanoma removed from her back 4years ago it was huge as it was misdiagnosed as a cyst,2 yrs ago she had a section of her intestine removed as it had colapsed,a melanoma was found inside{again missed}she now has them in her lung and liver and had 2 tumors removed from her brain on the 17/12/09 ,we find out what further treatment is needed this week,what interests me is the treatments you received as up until now they have only monitered her condition,and surgically removed the tumors,did you insist on them or were they offered to you,please let me know if anything has really helped,
keep on fighting and good luck

Melanoma - BRAF chemo
Has she had the BRAF/NRAS/KRAF or C-kit tests? These are used for targeted therapies that are just in trials.

1drusX

I'm a metastatic melanoma survivor
Dawn,

I had a melanoma tumor removed in 1997 and I'm still here. Mine also started as a mole then invaded my lymph nodes, then my brain. I did radiation and a vaccine study. Jesus got me through it.

I didn't do chemo, just radiation, but I still had trouble eating. It was very important to get good nutrition so I had a ton of juice during that period, and that really helped me out.

Keep smiling, keep laughing, start planning what you'll be doing in five years, pray, pray, pray, and you'll make it!

Kisma

Your Awesome!
I have had two cases of melanoma and several BCC. All of them in moles. You beat it once, you will beat it again and continue to do so. Like many of us here, we pay attention to our bodies and skin. Its a battle we will beat.

Keep your spirits up!

nmcmcn

1drusX said:

I'm a metastatic melanoma survivor
Dawn,

I had a melanoma tumor removed in 1997 and I'm still here. Mine also started as a mole then invaded my lymph nodes, then my brain. I did radiation and a vaccine study. Jesus got me through it.

I didn't do chemo, just radiation, but I still had trouble eating. It was very important to get good nutrition so I had a ton of juice during that period, and that really helped me out.

Keep smiling, keep laughing, start planning what you'll be doing in five years, pray, pray, pray, and you'll make it!

metastatic melanoma
my grandad has 4 metastatic melanoma tumors in his brain that originally came from having a mole cut out of his back 3 years ago. he has had 4 sessions of intense radiotherapy but doctors have said that they can't cure it. I've read that some of you have said that you were given a vaccine test. can you remember the name of the trial?
thank you for help in advance and good luck to everyone !

sbillinghurst

metastatic melanoma survival
march 1 swelling in armpit
march 10 see doc
march 14 see physical therapist
march 16 see other PT, tells me to see orthopedic surgeon
march 20 ortho orders MRI
march 20 MRI
march 25 MRI leads to referral to oncologist
march 30 orthopedic oncologist is out of network
april 1 appt with oncologist, biopsy
april 4 diagnosis of melanoma, must be stage IV
april 6 PET/CT scan ordered
april 10 PET/CT shows no brain or lung tumors, but tumor is fast growing, has doubled in size, and reaches up above collarbone into neck, inoperable ("nonresectable")
april 14 appt with director of clinical trials, object is to treat systemically.

this means that no tumors can be completely eliminated, just reduced in size. IL-2 however, I believe, has in 10% of cases resulted in complete remission. IL-2 has bad side effects, and I see some stories on that subject here I have not read.

I wonder just when to expect brain tumors. I feel something in my head. Maybe I have been laying in bed too long. Certainly if the doc hasn't started treatment he must believe there is time. But, PET scans can't see a tumor if it is too small, so, if they were already there, how long does it take for them to get large enough to cause symptoms?

Or does it depend on diet?

carrie2010

dawn144 said:

Hey there!

I am ready to succeed...I am not ready to be beat, that's for sure. All is well with the chemo..so far anyway. I've had two MRI's so far and they have been clear

Question
I will be starting interferon A here in about two weeks, I am scared to death about it. I am 25 years old with 2 young girls , a husband who is in the military ( who will be gone for most of my battle with chemo) and family who is 12 hours away. Is this the type of chemo your on and if so what were/are your side effects? Mine was found in the back of my head with a little bit of lymph node in it. When they did the sentinel lymph node biopsy and removed the margins everything came back clear. The doctor said the chemo is a preventive measure. I am diagnosed with stage 3A. Most of the posts I've read on here says that's a high stage to have. I know your no doctor but from what your told / been through the chances of it coming back are high?

carrie2010

rosebud1942 said:

Hello, I am a thirty year surivor of melanoma cancer to my right leg calf and right hip . I had chemo and radation which I suffer from the damages from them but I am alive.Keep your chin up and smile.E=mail me back and I live in Flordia too.Carolyn

I am getting ready to start
I am getting ready to start chemo and radiation her in about two weeks, if you don't mind me asking what damages did the treatments do to you?

donnaannand

sbillinghurst said:

metastatic melanoma survival
march 1 swelling in armpit
march 10 see doc
march 14 see physical therapist
march 16 see other PT, tells me to see orthopedic surgeon
march 20 ortho orders MRI
march 20 MRI
march 25 MRI leads to referral to oncologist
march 30 orthopedic oncologist is out of network
april 1 appt with oncologist, biopsy
april 4 diagnosis of melanoma, must be stage IV
april 6 PET/CT scan ordered
april 10 PET/CT shows no brain or lung tumors, but tumor is fast growing, has doubled in size, and reaches up above collarbone into neck, inoperable ("nonresectable")
april 14 appt with director of clinical trials, object is to treat systemically.

this means that no tumors can be completely eliminated, just reduced in size. IL-2 however, I believe, has in 10% of cases resulted in complete remission. IL-2 has bad side effects, and I see some stories on that subject here I have not read.

I wonder just when to expect brain tumors. I feel something in my head. Maybe I have been laying in bed too long. Certainly if the doc hasn't started treatment he must believe there is time. But, PET scans can't see a tumor if it is too small, so, if they were already there, how long does it take for them to get large enough to cause symptoms?

Or does it depend on diet?

Melanoma
Hi,

I'm 28 and 3 years ago was diagnsed with melanoma on my back, sentinal node biopsy came back clear however a CT scan last Aug showed it in my lungs stage IV. Doctors wrote me off, i went to mexico on the Issels programme and found it was in my brain so have had gamma knife radiation. I have just returned from the IAT clinic in the bahamas and feel extremely well. Have a CT scan this week and am waiting on the results of yesterdays brain MRI today so fingers crossed. Have changed me diet to organic vegan with fish and am doing juicing, definately no sugar and take lots of supplements, infrared saunas special baths (H2O2 bicarb and epsom salts) and coffee enemas, you name i'll try it!

Not ready to give up by a long shot so will see what results the scans bring!

All the best to everyone.

Donna

ckeeble93

carrie2010 said:

Question
I will be starting interferon A here in about two weeks, I am scared to death about it. I am 25 years old with 2 young girls , a husband who is in the military ( who will be gone for most of my battle with chemo) and family who is 12 hours away. Is this the type of chemo your on and if so what were/are your side effects? Mine was found in the back of my head with a little bit of lymph node in it. When they did the sentinel lymph node biopsy and removed the margins everything came back clear. The doctor said the chemo is a preventive measure. I am diagnosed with stage 3A. Most of the posts I've read on here says that's a high stage to have. I know your no doctor but from what your told / been through the chances of it coming back are high?

Intereron A
Carrie,

Hello, my name is Charmaine Keeble, and I live in Alabama. I was diagnosed in 1995, and then again, in 2002, I was diagnosed with stage 4 metastatic melanoma. Like you, I have two daughters ages 15 and 10 now they were 8 and 2 in 2002. I know how scared you must be at this time. If you need someone to talk to call me my cell number is 256.749.1161. I’m not crazy giving you my cell phone number. I just know how nice it is to talk to someone who has had and going through the same experience.

May, will be a year that I have been on Interferon A. I started May 2009 taken daily dosage's Monday through Friday. Since last June, I have been taken "Interferon A" shots three time a week which I give myself at home. The side effects for me were like having the flu all the time when I first started. Body aches, chills (mostly when I was taken it daily at the cancer center), and headaches. The pre-meds help a lot. There were a few times it felt like ice water was running through my blood and mood swings (still have). I have been able to continue with my schedule and my girl’s schedule. I may have slowed down just a bite, but I have learned only to do what you can, and you can’t will either take care of its self or finish it the next day. Remember the only way to being healthy is to take care of yourself first and then others I know it’s hard and to say and do when you have a family to take care. Talk to your girls, and explain to them. What is going own, believe me, I learned this the hard way. I also find it health for my girls to know everything that I am going through, and what they are going through.

I would love to talk more so please do not hesitate to call or email me ckeeble93@yahoo.com with any question you have.

sbillinghurst

donnaannand said:

Melanoma
Hi,

I'm 28 and 3 years ago was diagnsed with melanoma on my back, sentinal node biopsy came back clear however a CT scan last Aug showed it in my lungs stage IV. Doctors wrote me off, i went to mexico on the Issels programme and found it was in my brain so have had gamma knife radiation. I have just returned from the IAT clinic in the bahamas and feel extremely well. Have a CT scan this week and am waiting on the results of yesterdays brain MRI today so fingers crossed. Have changed me diet to organic vegan with fish and am doing juicing, definately no sugar and take lots of supplements, infrared saunas special baths (H2O2 bicarb and epsom salts) and coffee enemas, you name i'll try it!

Not ready to give up by a long shot so will see what results the scans bring!

All the best to everyone.

Donna

Update
I asked before whether "it" depended upon diet, but I did not specify what. The next girl said she definitely did not eat sugar. On this page we all have been diagnosed or a loved one has, so it is not about a diet to prevent cancer, it is about a psychological response to the natural impulse to eat food that makes a person healthy but does not feed a cancer, if such food exists. Since the doctors have not said much about diet to me, it is probably harebrained to worry about diet. The cancer is the only thing growing in a cancer patient's body. Stable disease (SD), progressive disease (PD), complete response (CR), partial response (PR), in no particular order, were used by one author
http://jjco.oxfordjournals.org/cgi/content/full/35/9/507
but these are terms for use when radiation, surgery, chemotherapy, and biological therapy might be tried, and people may be switched from one to another in a span of weeks, when life expectancy is on the order of months, and I am glad of that. I bet the growth rate of a cancer depends upon its mutations. I have a fast one. My time scale up there was long. It got to be ten centimeters in its longest diameter (LD), so, these designations are to be taken with a grain of salt. It doesn't have to spread to adjacent lymph nodes, and five years symptom-free is not out of the woods. It doesn't have to metastasize to the most common organs. It's only a little bit predictable. If you don't get it in Stage I the prognosis is grave, no matter how shallow. Getting it means doing more than the doctors are willing to do. Don't be misled by something they say. If you've ever had it, insist on PET/CT scans every six months. It's not really curable. The whole medical approach needs top-to-bottom reform. Why have loved ones drive you home or stay with you in the hospital? Why let dermatologists monitor it without instruments? Why can't a tumor be partially resected? What is it that allows a tumor to have a border with normal tissue which constantly migrates into the normal tissue, vascular, bone, or soft tissue, and become nonresectable by virtue of the necessity for hacking two centimeters into good tissue to allow the wound a clear border to close? It grows quickly and can be found anywhere, so it just kills in almost every recurrent case. It is really two diseases IMO, and the term "early detection" as applied to moles and not metastases, given the long latent period, is medical hogwash.

Since I posted on the sixteenth, Starting Monday, April 26, I am to receive interleukin-2 alone. That is toxic, but it is not enough. It is my belief that vaccines have shown efficacy and should be standard.

ACS:: Dietary Supplements: How to Know What Is Safe:

http://www.cancer.org/docroot/ETO/content/ETO_5_3x_How_to_Know_What_Is_Safe_Choosing_and_Using_Dietary_Supplements.asp

mc1984

carrie2010 said:

I am getting ready to start
I am getting ready to start chemo and radiation her in about two weeks, if you don't mind me asking what damages did the treatments do to you?

Side affects
Hi Carrie,

I did interferon back in 2008/2009. We stopped 9 months into the treatments because of neuropathy. I had stage 3 melanoma in 2008. I also had it twice in 1996. I still hurt today because of the neuropathy the pain Never stops. I pray you do not develop to many side effects. I also haven't slept through the night in over a year. I also have many sleepless nights. I quess I could be called Sleepless in Atlanta lol. If you ever need someone to talk to please don't hesitate to contact me.

Mark

rianna

donnaannand said:

Melanoma
Hi,

I'm 28 and 3 years ago was diagnsed with melanoma on my back, sentinal node biopsy came back clear however a CT scan last Aug showed it in my lungs stage IV. Doctors wrote me off, i went to mexico on the Issels programme and found it was in my brain so have had gamma knife radiation. I have just returned from the IAT clinic in the bahamas and feel extremely well. Have a CT scan this week and am waiting on the results of yesterdays brain MRI today so fingers crossed. Have changed me diet to organic vegan with fish and am doing juicing, definately no sugar and take lots of supplements, infrared saunas special baths (H2O2 bicarb and epsom salts) and coffee enemas, you name i'll try it!

Not ready to give up by a long shot so will see what results the scans bring!

All the best to everyone.

Donna

IAT THERAPY
Hello Donna


How are you? did IAT treatment worked. I am trying to do a search about that clinic if it works for melanoma.

Thank you in advance

Meg1414

Here's another....
I just found this site today and it's amazing that there are so many of us! I was diagnosed 8 years ago with stage 4 metastatic melanoma. It had started as a mole on my left foot and spread to 1 lymph node in my thigh. I did 1 year of interferon, and besides lymphedema in my leg now, I'm doing fine. However, now I am trying to get pregnant. I don't have an oncologist anymore (he retired a couple years ago) and wondered if anyone knows about my chances of getting pregnant after interferon. I remember that they told me there was a chance that I couldn't then, but that was a long time ago. Wishing all of you the best!

DynamicDbytheC

ckeeble93 said:

Intereron A
Carrie,

Hello, my name is Charmaine Keeble, and I live in Alabama. I was diagnosed in 1995, and then again, in 2002, I was diagnosed with stage 4 metastatic melanoma. Like you, I have two daughters ages 15 and 10 now they were 8 and 2 in 2002. I know how scared you must be at this time. If you need someone to talk to call me my cell number is 256.749.1161. I’m not crazy giving you my cell phone number. I just know how nice it is to talk to someone who has had and going through the same experience.

May, will be a year that I have been on Interferon A. I started May 2009 taken daily dosage's Monday through Friday. Since last June, I have been taken "Interferon A" shots three time a week which I give myself at home. The side effects for me were like having the flu all the time when I first started. Body aches, chills (mostly when I was taken it daily at the cancer center), and headaches. The pre-meds help a lot. There were a few times it felt like ice water was running through my blood and mood swings (still have). I have been able to continue with my schedule and my girl’s schedule. I may have slowed down just a bite, but I have learned only to do what you can, and you can’t will either take care of its self or finish it the next day. Remember the only way to being healthy is to take care of yourself first and then others I know it’s hard and to say and do when you have a family to take care. Talk to your girls, and explain to them. What is going own, believe me, I learned this the hard way. I also find it health for my girls to know everything that I am going through, and what they are going through.

I would love to talk more so please do not hesitate to call or email me ckeeble93@yahoo.com with any question you have.

Thank you from a newly diagnosed
Hi Charmaine,
I am stage 3 but am waiting for the pathololy reports to know what is next. I am scared when I see the range of survival statistics anywhere form 35-65% or less depending where I look.
Thanks for posting and giving me hope.
D

DynamicDbytheC

1drusX said:

I'm a metastatic melanoma survivor
Dawn,

I had a melanoma tumor removed in 1997 and I'm still here. Mine also started as a mole then invaded my lymph nodes, then my brain. I did radiation and a vaccine study. Jesus got me through it.

I didn't do chemo, just radiation, but I still had trouble eating. It was very important to get good nutrition so I had a ton of juice during that period, and that really helped me out.

Keep smiling, keep laughing, start planning what you'll be doing in five years, pray, pray, pray, and you'll make it!

Thanks for hope from a newly diagnosed who..
is waiting for pathology reports and scared.

drewherndon

APatient said:

First I d like to ask a question. Why is it
I cannot post a messg on my own here? I see
no where on this board for me to start a new
topic? Why? Can you help?
Next......I had a rare melanoma removed from
my scalp this past Aug. I now have in 2003
a mass inside and on the outside of my spleen
don't know how long its been sitting there.
It was found by accident on a M R I of
abdomen. The melanoma in scalp was a
cellur blue nevus . Anybody have melanoma
show up in there spleen and what could
be done about it. Im being told that
the whole spleen will have to come out.
please respond anybody..............
thanks

Spleen Melanoma
Try IL2

turtlegur_22

Meg1414 said:

Here's another....
I just found this site today and it's amazing that there are so many of us! I was diagnosed 8 years ago with stage 4 metastatic melanoma. It had started as a mole on my left foot and spread to 1 lymph node in my thigh. I did 1 year of interferon, and besides lymphedema in my leg now, I'm doing fine. However, now I am trying to get pregnant. I don't have an oncologist anymore (he retired a couple years ago) and wondered if anyone knows about my chances of getting pregnant after interferon. I remember that they told me there was a chance that I couldn't then, but that was a long time ago. Wishing all of you the best!

i was diagnosed also with
i was diagnosed also with this cancer stage 3 and wanted to get pregnant my doctor from military base said it was fine because interferon is given to pregnant women for other things also not to sure for wat but he said if i had wanted to get pregnant during treatment that i could. and your not on it anymore so should be fine i am only 21 so not sure if age plays a part in this hope this was helpful.

turtlegur_22

Meg1414 said:

Here's another....
I just found this site today and it's amazing that there are so many of us! I was diagnosed 8 years ago with stage 4 metastatic melanoma. It had started as a mole on my left foot and spread to 1 lymph node in my thigh. I did 1 year of interferon, and besides lymphedema in my leg now, I'm doing fine. However, now I am trying to get pregnant. I don't have an oncologist anymore (he retired a couple years ago) and wondered if anyone knows about my chances of getting pregnant after interferon. I remember that they told me there was a chance that I couldn't then, but that was a long time ago. Wishing all of you the best!

Hi, i was diagnosed with
Hi, i was diagnosed with this cancer also stage three a , my oncolgist from a military base said it was safe for to get prenant on treatment because they give interferon to pregnant women with other diagnoses not sure for wat exactly but i was told it was safe for me to do so. Im sure sent you been off a while shouldn't be hard, im only 21 but dont think age play a part in this. Well hope this was helpful good luck!!!

young_survivor

im not sure about any
im not sure about any statistics, but i was diagnosed with melanoma stage 2 in early october 2010 im 14 and had surgery early november 2010 i have a massive scar (8inches ) on my right arm reaching from a bit below my sholder to a bit above my elbow. im pretty sure im the youngest in florida so far