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stage 3 after first surgery

jessicaansean
Posts: 2
Joined: Jan 2007

hello, i am new to this board and i really need to hear some facts. My cousin was diagnosed with melanoma in november, and just had her first surgery on Jan. 5. Her tumor was more than 4mm thick and was ulcerated. Her biopsy showed that her cancer spread to her lymph nodes and she is schedualed for a second surgery to remove the rest with a follow up treatment of chemo. I'm really scared for her. The doctor told her she has 4-6 years, and all the statistics that i have read show that she has a 28%-60 % chance at a survival rate of 5 yrs. I'm really scared for her. I know because she is young that automatically gives her a better chance. Honestly, if she has the surgery and gets the chemo, wont that kill the cancer cells? And even if it does come back, wont they find it early, since she'll be going for regular check ups? I mean, i know i'm in shock, but HOW could she possibley die from this? I would really appreciate to hear anyone's advice, survivor stories, or just straight facts-thanks!

Hander's picture
Hander
Posts: 6
Joined: Sep 2006

jessica I don't have a lot of facts and figures, but I can tell you this: I am 28 yrs old and was diagnosed this past September with melanoma. After they removed the ulcerated tumor and did a sentinel biopsy, they found that the cancer had spread to not only my groin lymph nodes but to my pelvic nodes also. I have had surger to remove all the nodes in both areas and another surgery to clean up some infection. I am now going through my chemo (Interferon with a drug called Intron A). I will do this treatment for a month intravenously, then I will give myself injections 3 times a week for 11 months. My doctors are some of the best and feel certain that I will survive this. I'm sure your cousin will get through this fine. My experience with this has taught me to not look at facts and figures and just believe that I will be okay. I have talked to many people in my cancer clinic who are survivors and they give me a lot of faith. My prayers are with your cousin and your family. Please just know that positive thinking plays a huge role in recovery! If you need to talk just let me know.

jessicaansean
Posts: 2
Joined: Jan 2007

Thank you so much for your response. You're absolutely right, i should rely more on my faith than on the facts that i've been hearing. All things are possible through Jesus! I wish you the best of luck with your treatments and you will be in my prayers. Did the interferon make you loose your hair?

Hander's picture
Hander
Posts: 6
Joined: Sep 2006

I have finished my first week so far and things are going better than expected. I do have some fatigue and nausea, but I have not lost my hair. My nurse checked with other nurses and told me that they have had only a couple of people lose their hair from this treatment. Since our bodies naturally make interferons, this treatment is not as harsh as other forms of chemotherapies. I will let you know more as my time goes on. Feel free to ask me anything. I'm away from home for this month so I get on the computer quite often.

agregory
Posts: 1
Joined: Jul 2007

Hi Hander. I am just starting Interferon, and am wondering if the side effects get better or worse over time. What is your experience?

pniro
Posts: 43
Joined: Jul 2007

Hi there...my husband has been on 10 million units of alpha-interferon for the past 7 months. He is in a clinical trial for a rare disease called Lymphomatoid Granulomatosis. He pretty much feels like crap all the time..he says he feels like he runs a marathon everyday. His mental alertness is not where it was but he is managing. We found out Thursday he had a relapse and his meds have increased to 15 million units. We were supposed to be done this November but now we are hoping for August '08. He is still working but we are wondering how he will handle this new dosage. He will be 40 this weekend and we have 3 children. How many units are you on, and how often will you administer the drug?

wbrinson
Posts: 1
Joined: Feb 2008

Hi, I too am dealing with Melanoma and the interferon. I have been taking the drug for almost a year. I did 4 weeks of daily IV infusions and Have been giving myself shots 3x per week since. With the infusions, I felt really really tired afterwards. I only got sick one time. Somedays you just feel blahh..But for the most part it has not been bad. My doctor tried to get me to file for disability while I was undergoing the treatments but I refused. I felt mentally I needed to keep on going or I would dwell on the worse. (Which I still do but not as bad as I would) Foods will lose there flavor, try taking Zinc if you start tasting metals. Would also suggest Calcium supplements for the leg cramps. For the fever I take 2 Ativan and 2 Nabumetone before each injection. This is the only thing I have found that keeps the side effects under control. (Ask your doctor first)
I would not say things get worse. I think we just begin to learn how to deal with the expected. The worse side effect is Fatique. Try to get some sort of exercise and You'll do fine. (This is coming from someone who absolutley HATES exercise. But It does make a difference. Meds can control the side effects but only exercise can control the fatique.
Friend from the East Coast. Good luck to you.

devastated
Posts: 4
Joined: Jul 2009

My son was put on interferon three times a week for 1 year. About half way through they found melanoma in the pancreas. It didn't help him. Just want you to know that not everybody's body is receptive to that drug. Hope you are well.

emanuel41's picture
emanuel41
Posts: 2
Joined: Apr 2005

dear jessica i was the same way 4mm thick on the trunk of my back stage 4 thank god in did not spread into my nodes my survival rate was the same they told me i had 4-5 years tops its been 7 now the facts are they dont know possitively about how long thats gods decision but eating right and positive attitude really helps the body heal itsself i was 36 years old just got married on jan 8 2000 and diagnosed in march26,2000 it was devastating news for my wife and 2 kids at the time i refused chemo i said cut away after 6 hours of surgery that was suppossed to be 1/half hours it was over, leaving me with chronic pain and nerve damage to my back. even so i was happy to be alive,7 years and 2 more kids total of 4 boys iam getting along good ,along with pain meds i can enjoy my quality of life, which is sometimes comprimised,when the docters say i have no pain and try to cut my meds? go fiqure they cant feel it its not there!! your cousin has a good chance of living a long and happy life just make sure they visit there dermatolgist at least every 3 months and always always get an second opinion if not it may cost them there lives!!anyway tell your cousin keep the faith up and happy attitude helps tremendously,god bless emanuel osborn

tomsteve
Posts: 4
Joined: Nov 2006

well i wish i could have written a few months ago, but i'm still a computer idiot.by now your cousin has probably gone through a lot.i hope and i will pray that both of you have the strength, courage and will to fight. i'm a stage 3c melanoma survivor and can say so far i have learned quite a bit in the last year.i've had the nodes under my arm carved out and a huge chunk of my back carved out,and they had to go in again after 4 months. went through 4 weeks of interfuron in between the surgeries, but the cancer was still there after the first carve job. a few months later a PET scan showed i had 9 tumors on my back and the cancer was spreading across my collarbone.went through IL-2 treatment, which was pretty rough, but a followup PET scan showed it knocked back all of it but 1 tumor on my back, but that one was smaller. gonna get another PET scan in a few weeks and i am gonna be goin through moreIL-2 or if the cancer shows up elsewhere, something else.what gets me through all this????? major amounts of faith. i MUST let God and the doctors do what they do best. ib dont know anything about treating cancer and quite often i don't know what is good for me, so i leave it in their hands. i have total trust in both of them and leave it that way. if i keep my mind in today, i have a highr level of serenity. yesterday's history, tomorrow's a mystery, today's a gift and that is why it's called the present. one of the greatest things i must do is keep my expectations low. when i went in for the IL-2 treatment i didn't know if i should pray for the best but prepare for the worst or what i should do. by not expecting anything, my level of acceptance of what happened was higher. i have to do that for appts. with my oncologist, too. if i don't expect good news, then when he says more chemo. i can accept it better and my serenity level is higher. i hope something i typed can help you and your cousin and i will pray for both of you..take care and hope to see an update.

lmh31
Posts: 1
Joined: Apr 2007

Hi I don't know if the original writer will get this, but hopefully it will help anyone who looks at this as I remember all too well searching the web for some positive news about stage 3 melanoma. I also really wanted some realistic information about surgery and interferon. I will be a two year survivor in June. I was diagnosed at age 29. The original melanoma was on the back of my right calf. They found a micrometastasis in my sentinel node and after much debate and lots of research, I decided to go ahead and have the rest of the lymph nodes in my groin removed. I also decided to do a year of interferon. After all, I was way too young not to try everything in my power to beat this. My surgery went well, my right leg is still pretty numb, but I really don't have too much trouble with lymphedema. My leg would get a little swollen every now and then for a while but rarely does now. As far as the interferon, I can't say that it was fun and that there haven't been several other problems that have been a result, but I made it through and it is just a faint memory now. As far as hair loss goes, I lost about half of it around months 6 and 7 of the interferon, but luckily I started out with an abundance of it! I also understand that hair loss is pretty rare. I had many pretty good days. I was fatigued most of the time, but I didn't have to miss anything that I really wanted or needed to do. I worked full-time but sometimes had to leave early or come in late. I experienced some nausea and vomitting, but the medicine they gave me helped. I had some gastrointestinal problems that I never had before and am now actually getting ready to have my gallbladder removed due to gallstones that I am pretty sure are a result of the interferon in some way. My teeth also became very fragile and I recently had to get two caps. I know that doesn't sound very good when it is all thrown out at once, but it has all been very manageable and I WOULD do it all over again if I had to. So far, scans have been good. I am optomistic at this point and my doctors have never given me a time frame. Like someone else mentioned, you have to remember that each case is completely different. I hope all who read this are doing well. Please let me know if you have any questions. I am sorry this is so long, but I would have wanted to read this when I was going through it. God bless.

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

Hi, I am 34 yrs old living in Newfoundland, Canada and I was diagnosed with stage 3+ melanoma back in Jan of this year. I've had the sentinel node biopsy, one node was positive under my left arm. Both nodes removed in my neck were ok. Then I had the total ALND to remove all the nodes under my left arm. So far I'm doing fine, no swelling, just lots of pain when moving the arm or stretching the arm far, but not too bad altogether. I'm waiting the results from a CT Scan I had done, as well as the ALND....hopefully nothing else is bad. I know the stats are horrible but I'm a strong believer in God as many of us are. God will work through the doctors and ourselves if we ask him. Not one of us, helathy or sick, knows about or is guarenteed tomorrow, live each day and have faith as the reward of eternal life in heaven will totally eclipse any sort of life on earth, no matter how long, how rich or how many earthly riches we have. There are numerous new research projects and trials ongoing, some show some success, but still not a lot. I've heard about a new treatment just in the trial stages but with some great results in trials, by a company gammacan ...this stuff is quite interesting, just search for it in google...biological therapies, vaccines, and chemo have shown some effectiveness in as much as 10-25% being potentially cured. Although nearly 8000 people die yearly in the United States from melanoma, it is clearly something that requires much better treatments and more research, as it is one of the more stubborn cancers when it comes to responding to chemo and other drugs. Do not give up, however, as the power of God, your mind, and the doctors can all combine through God to heal anyone, anytime when God sees that you are a true believer, and are following the bible, and in your heart God knows your true beliefs, your true ideals, and thoughts, how you feel, and if we truly believe we will be healed, as it says in the bible that if we were to have the faith the size of a mustard seed we could move a mountain by God's power through us. God Bless!
Derrick.

tomhr
Posts: 1
Joined: Jun 2007

Thanks for sharing-I agree that faith in Jesus is the most important of all the cancer process-I am at stage 3 melanoma now and exploring what I should do-how is your life at the moment? Regards, Tom

annamom1
Posts: 3
Joined: Sep 2007

Hello, I am new to this site. I have been reading and wanted to hear about someone elses experiences w/ Melanomo and treatment. I am currently taking Interferon, the beast. I am also Stge 3 and worried.

devastated
Posts: 4
Joined: Jul 2009

How is you cousin doing? My son was recently diagnosed with melanoma. I too am in shock. He is my only son. The melanoma was removed and he had lymph nodes out and then recently they found melanoma in his pancreas. He has just had 8 hour surgery for the removal of the body of the pancreas. I did not realize how bad melanoma is, as the survival rate is 10% for a 5 year survival rate. Diet is very important for survival. Let me know what has happened. thank you.

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

Just to let everyone know that the facts you heard are correct and although it is disheartening I am a stage 4 Melanoma suvivor. I have had over 19 tumors inlcuding 7 in the lungs and 5 in the brain (others throughout the lymph nodes).

A couple of things to remember, one is you are still alive so dont waste your time worrying (I know thats hard to due at times), enjoy every minute of every day. Second their are new drugs all the time (I'm on one right now that has been in the news) so the odds continue to get better (I had a 50% chance of living 2 months and every 2 months after that and that was 2 years ago.)

Some things that help
1. Eat well no matter what treatment you are going through being healthy helps
2. Exercise... trust me I know how hard it is especialy while on Interferon. Any exercise you have done will act like you've done 1000 times that once you are off treatment. (ie I would walk to the end of the block or on a golf course, when I was complete I could run further than I did while I was training before chemo)
3. LAUGH EVERY DAY. Its good for you and others around you. If they hear you laugh they know you will be alright.
4.Hug someone ... it kills cancer.
5.

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

I found my mole starting from a size of a dot, it was the size of a pencil eraser in a couple of months. I had it removed as wells as the lymph nodes. I went on Interferon for 13 months (not fun). Within 6 months it had spread to the lung and a lymph node right beside the lung. I then did trial chemos and eventually interluken 2 and three other standard melanoma chemos all at the same time (maybe the only thing that I've heard of that is worse than interferon). After other tests showed that that wa not working I went on other trials. The cancer continued to spread and eventually made its way to the brain. I had stereotactic radiation done but the prognosis continued to look bad....

The problem is that once Melanoma is in the blood stream it is very hard to contain and remove. No chemo or radiation to date as shown that Melanoma can go into remision.

Now shortly after I was told that I didn't have to stay on my strict diet anymore and that I should take some time to go and visit family and friends (A nice way of saying you dont have many days left... 2 months maybe). Now just so you know that not once did I get mad or blame anyone, I didnt sulk or hide away... I continued to live my life with a joy and a clarity I never could before the Melanoma. Everyday I woke up and was thankful that I could, I laughed I made others laugh, I played with the dog and just like my dog I lived in the moment (whatever happened in the past I could not change, and whatever is going to happen in the future I have no control of).

I funny thing happened... A month earlier I had 3 tumors in my head and another 2 were forming (I could have a stroke at any moment), the main tumor in my lungs was the size of a fist and the one in the lymph node under it was the same size and the two were squeezing my main artery to the heart (about 90% blocked), so I could have a heart attack at any moment. If you've seen the preview for Adam Sandlers new movie.. the part where the doctor said he doesnt know which is winning the treatment or the cancer was pretty much word for word what I was going through. Then all of a sudden the trial vaccine started to work and 2 years later here I am. I am not tumor or cancer free, but I still enjoy everyday that I have.

So my advice to you is read my 4 things to do at the bottom of the thread.

Also please know that the 5 year survival rate for stage 3, although it may be true, is misleading because there is also a chance that she could live without the Melanoma every spreading and could die of normal causes. So do whatever it takes to keep it at stage 3 (ie the hell known as Interferon).

ClarenceJ
Posts: 2
Joined: Jul 2009

I would like to know where do you do those treatments?

My husband has recurrance melanoma. It appears the doctors at MCV are very reluctant on providing treatments such as interferon. Their advice is surgery and radiation, which i find it very conservative for this condition.

Hoping to hear from you,
Clarence

devastated
Posts: 4
Joined: Jul 2009

What were the trials that you were on? Were they effective?

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