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looking for melenoma survivers

scotcny
Posts: 3
Joined: Jun 2009

i'm looking to find melanoma survivers that have had a recurrance that has spread to other parts of the body.I had melignant melenoma removed from behind my right knee and from the sentinel lymph noid .This was 8 years ago. After some right leg problems I went to docters to find out that cancer has spread into my lymph noids and a spot on my brain. The spot on brain was small and I just had a cyber knife procedure done that will hopefully take care of this issue.I have to wait 6-8 weeks before next mri .then there talking about doing interlukin2 and vaccine made from melenoma tumor.I'm trying to find out if and what dietary changes survivers made and what type of exercises they may have started to help boost immune system.I'd like to also find out what treatments you used.I'm 46 years old with 2 kids in college and i want to be there for them.so i'm going to beat this

Derrick's picture
Derrick
Posts: 7
Joined: Apr 2007

Hi,
I am 36 yrs old. I was diagnosed with Melanoma Stage 3A over 2 yrs ago. My primary was on my back and it was spread to my nodes under my left arm. I had all nodes removed. I am doing ok so far. I am very interested in your case. Similarities and a lot I can learn I think. Hope to add you as friend.
ttyl
Derrick,
Canada.

asilvis
Posts: 2
Joined: Mar 2009

Hi Derrick,

I too was diagnosed with Stage III melanoma in January of this year. The mole was on the back of my left shoulder. I had my first surgery in February to remove the primary tumor as well as sentinel node mapping. Both sentinel nodes tested positive for cancer, so in April I had all of my left axillary nodes removed as well (70 in all). 32 of them tested positive for cancer so I was advised to undergo radiation and interferon. I just finished up 23 treatments of radiation a couple of weeks ago. I will begin high dose interferon on Monday. I had a mediport put in today for the IV infusion of interferon (5 days a week for 1 month). After that I will have 11 months of self injection (3 times per week). So far I am handling treatment very well. I am being treated at Roswell Park Cancer Institute in Buffalo, NY and they have been wonderful. I am glad to hear you are doing well.

Amy

shellsings44
Posts: 1
Joined: Feb 2004

how did you know that it had spread to the nodes under your arm what test did they do to find it there when your primary was on your back. I had a melanoma on my neck 6 years ago and just had a mole biop done on thurs. but when i had the pimary they did not look any further than the three closest lymph nodes??
TY
shell

scotcny
Posts: 3
Joined: Jun 2009

Derrick ,
I had a mole removed from behind my right knee which came back possitive . then had sentinel lymph noid removed.That also came back possitive.I then had all the lymphnoids removed from my right groin.These came back negitive. I went 8 years with clear check ups untill back in march I was getting more swelling in my right calf then normal.I went to doctors and they did a sonogram to check for a blood clot,there were none. I had a ct scan done and by chance the went a little hgher in my chest and discovered a mass in the lymphnoids behind the liver.I had a MRI done and a pet scan done and found that the cancer had spread to 9 different lymphnoids.Then a 7mm spot on my brain .last week I had a cyber knife treatment done and the doctor is very confident that this will take care of it.I'm now waiting for 6-8 weeks for results and then going to NIH in Bethesda MD for consultation about having high dose interluckin 2 and a vaccine made from one of the tumers and then injected back into me.While I'm waiting I.m looking into nutritional changes and exercising changes to help build up my immune system to fight this off.I would be happy to keep you up to date on what I find out.

longingforhope's picture
longingforhope
Posts: 61
Joined: Apr 2009

My husband who is 50 had a malignant tumor on his back removed last fall and it led to another surgery 2 weeks later to remove 20 lymph nodes under his arm because it had matastisized. He is on Interferon for a year, his only choice, if they do chemo it will be back within 6 weeks and the same for rad. He underwent 5 weeks of treaments 5 days a week by iv which took several hours a day. Now he does shots 3 times a week for a year. The medicine makes him very fatigued and causes depression and nausea at times. But it's this or check out and he's not ready. Interleuken 2 in an option in the future if it spreads again. He eats lots and lots of fresh veggies and fruit, especially tomatoes that are high in anti oxidans. He also is taking fish oil another good cancer supplement and you have to protect your heart too from all the stress your body is undergoing. Drink lots of water and ensure helps boost your immune system. Take vitamins and even check with your health food store or a Nutrionist for advice. Our kids are only 15 and 18 so he is fighting hard and trying everything he can. Oh and don't forget exercise it releases endorphins in your brain and the more the better.

peggy01700
Posts: 8
Joined: Mar 2008

I also have melanoma that has spread to other parts of my body. Originally, in 2003, I had a melanoma on my right shoulder. It was removed with a wide excision and I also had a sentinal node biopsy which came up with no cancer. Then in 2007 I started having back/hip pain which turned out to be a large tumor on my hip which was melanoma. Also, it has spread to my lungs with some small nodules and to my bones. Since then I have had chemotherapy through a clinical trial (carboplatin & paclitaxol & Bay 43/placebo); This seemed to keep the disease stable for quite some time. I also have been in different clinical trials involving immunotherapies-- these did not help in my case. I have had hip fractures and I am in a wheelchair now, but I'm not giving up. Now, I have just started on an FDA approved drug, Riluzole, through a clinical trial. Riluzole is used to treat ALS (Lou Gherig's Disease) and they had some success treating melanoma with this drug. These trials are through the Cancer Institute of New Jersey. As for my diet, I have not changed it significantly as I was a healthy eater before I had melanoma.

I have 2 grown daughters and a new granddaughter, so I also am fighting melanoma. It has been almost 2 years now. So, try to be optimistic and give it all you have.

All the best to you.

Peggy01700

rwagner
Posts: 11
Joined: Jul 2009

Hi! My dad is fighting a recurrence of melanoma from 25 years ago that has spread to his lungs and brain.
While researching how I could help him, I found http://www.crazysexycancer.com/. This site is by a woman who is using diet & exercise to boost her immune system. I hope it is helpful or at least interesting to you!
Best wishes to you...
R

yalleh's picture
yalleh
Posts: 36
Joined: Jul 2009

Dear Scotcny, I am a stage 4 Melanoma survivor. I have tumors in the lungs (7), lymph nodes (7) and brain (5). I have had stereotacitic radiation on the brain, I have undergond the Interlukin 2 and several vaccines and trails. I have done the Interferon A and a bunch of other chemotherapies (3 of which were given during the Interluken 2).

My first advice is to be careful of advice given over the internet, especially while on one of these treatments (even from me). Speaking from experience I had done some of the diets suggested and it made me too weak to do the treatments so I actually had to go on a high protein diet (my doctor made me) so my body could reproduce some of the blood cells that the chemo was killing. The best advice is to ask the doctor that is giving you the treatment, what you should eat or drink. Again speaking from experience while on Interluken 2 I can almost gaurantee they will want you to drink lots of water (and keep track of what fluids you take in and put out... a side effect of interluken 2 is that you may retain water and blow up like the michelin man which can be very painful and fatal.

My advice for diet is to eat healthy as almost every doctor has adviced for the last hundred years. Eat a balanced diet veggies, fruits, grain, meats... dont have to much fat and try not to have too much sugar.... HOWEVER remember this...always keep a good attitude (looks like you've done that)... I was told 2 years ago when the melanoma spread to my brain that the 50% survival rate was on 4 months for my type of fast spreading melanoma, so enjoy what time you have and eat what you like.

Feel free to send me an email any time you want

scotcny
Posts: 3
Joined: Jun 2009

I thought i would give an update . after finding melanoma in my lymphnoids and right calf,chest and left thigh the pet scan also showed 7mm on my brain .I had cyber knife radiation done and the tumor is gone. Went to NIH in bethesda for clinical trial and had another tumer 4mm found on my brain . I had cyber knife radiation done again and hope this is also successful.I will be starting a chemo treatment of tamidar for 5 days then check to see if tumers in leg and chest reduce then will wait to go back to NIH FOR CLINICAL TRIAL and repeat chemo for another 5 days.if this does not work then I will have IL-2 ,CHEM,RADIATION AND A TUMER REMOVED AND HAVE GENETICALLY ALTERED TO FIGHT CANCER AND PUT BACK INTO MY SYSTEM.
i BELEIVE THAT YOU NEED TO TAKE ONE DAY AT A TIME AND BE THANKFUL FOR THAT DAY AND ENJOY LIFE.

hollyberry's picture
hollyberry
Posts: 176
Joined: Nov 2008

Scot,
Great attitude! While taking that one day at a time, try also, to be a little self-indulgent. It will make you feel better to get through the crappy treatments if you know that you can: take a nice bubble bath, have your favorite meal or just do what makes you feel good at the moment! It may not cure our cancer, but it sure goes a long way to boosting your ability to keep fighting.
I have spent nearly 2 years fighting this beast and I can say that taking the time to do things I enjoy makes the treatments and testing easier. Hang in there, my friend,and know that we care!
Best of luck to you,
Hollyberry

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