Hello all! Returning member here.

Greetings again ATS. I'm sorry mods if I did this wrong, but I could not remember my old password or email addy. So I used my current email and just made a new profile.

Anyways ATS I had started a thread back in June when I was diagnosed with stage 4 Metastatic Melanoma I just wanted to give an update on whats been happening with me since then with recovery. (www.abovetopsecret.com...). Immediately after getting to M.D. Anderson they started me on biochemotherapy. Which is a combination of a drug called IL-2 and regular chemo, as well as 5 other drugs to try and keep the cancer from spreading. The side effects are horrible and unlike regular chemo you must stay at the hospitol and be monitored for a week or so, then go home for a few weeks to heal up. Repeat. Well after 5 months (6 treatment cyles) I'm happy to report the tumor in my right lung(which was about 5.5 cm) is completely gone. The tumor in my sinus cavity has shrunk considerably, enough so that they can operate to remove it. Before, it was too big, and too close to the brain. I did have a small tumor found on my right upper lobe at a recent MRI. and I just finished what they call the Gamma Knife procedure to radiate and kill the lesion to keep it from spreading. Next step is getting with a surgeon to see just how they plan on getting the remains of this tumor in my sinus cavity out. The doctor said that it is most likely alot of dead tissue in there that has to go. The Doctors say how lucky I am that the biochemo worked like it did on me. It only does that for about 12-15 percent of the patients who must go through it. As unlucky as getting such a rare type of cancer was, I'm lucky that I am being healed of it.

Facing your own death has a way of forcing you to look back on your life and decisions. And making you think of how you prioritize the choices you make. In a weird way I'm grateful for all the adversity that I've had to deal with the last 6 months. I'm going to update this thread as soon as I know more about the last surgery. Stage 4 cancer is horrible. If Anyone is having to go through these treatments, or if you know someone who is, or if you would just like to know more about what its like I'm happy to answer any questions.

hi...
glad you are here man....in alot of ways.....I hope we don't disappoint....I hope you enjoy our company as much as I think we will enjoy yours.....good luck buddy....I wish you the best

and we add 1 to the tally....nice...

reply to post by Cancerwarrior


Congratulations on having successful treatments! I know two people who have beaten cancer and it almost looks like with the medical breakthroughs, it may one day be something that doesn't bring your own mortality into question the moment you hear that diagnosis. Good luck with your treatments and with your life.

Glad to hear you are doing well!

Question ... my husband has had melanoma so I'm curious ... did yours go to the lungs? His was caught early so it didn't get that far but we were told that melanoma likes to go to the lungs. At stage four, I'm wondering if yours went into the lungs and if so ... WOW .. you managed to beat it?!?!!!!! Good for you!

Welcome back Warrior,,,so happy to hear you are winning the battle....

Bright Blessings,

Des

reply to post by Cancerwarrior

I'm glad to hear you are okay but your story raises an interesting point.

"The Doctors say how lucky I am that the biochemo worked like it did on me. It only does that for about 12-15 percent of the patients who must go through it."

Said differently, the doctors are used to giving people a treatment they know will be useless on almost 90% of patients.

That is quite a statement. Anyway, glad to hear you are bouncing back and rejoining ATS. See you around.

Very glad that you are doing better. Welcome back. Now get better and stick around we need you here.

All the best to you. Looking forward to your updates. I'm hoping that they will all be good news.

Welcome Back!

It sounds as if your new name was appropriately chosen.

Looking forward to hearing more from you.


Johnny

reply to post by LightSpeedDriver


Well, I would not really say that its totally useless, for some people just getting them to stop growing, or to shrink a little bit is quite a victory. Of course, there are some people on the opposite end of the spectrum whose cancer grows while on the treatments. Melanoma is a very unpredictable and aggresive cancer. I'm just one of the lucky few that got a dramatic response from the treatments.

Originally posted by LightSpeedDriver
"The Doctors say how lucky I am that the biochemo worked like it did on me. It only does that for about 12-15 percent of the patients who must go through it."
Said differently, the doctors are used to giving people a treatment they know will be useless on almost 90% of patients.
That is quite a statement.

Perhaps, but it is more of a statement regarding the ferocity of the disease. What is more relevant is the number of survivors without the treatment. Then one can decide how much they like the odds.

To the OP, welcome aboard/back. Cancer sucks...been there, done that, got the tattoo.

Originally posted by FlyersFan
Glad to hear you are doing well!

Question ... my husband has had melanoma so I'm curious ... did yours go to the lungs? His was caught early so it didn't get that far but we were told that melanoma likes to go to the lungs. At stage four, I'm wondering if yours went into the lungs and if so ... WOW .. you managed to beat it?!?!!!!! Good for you!

Yes, I had a small mass about 5.5 cm in my right lung. As well as several smaller lesions in my left lung. I also had lots of subcutaneous tumors on my head, neck, and stomach. A few of these were removed for biopsy, but the majority of them were killed by the Biochemo. I was initially diagnosed in 2007 with a giant nasty looking mole behind my left ear. I went to M.D. Anderson then for removal of it and just thought I was really lucky that they caught it early. I really had no idea that whats classified as a skin cancer can come back at any given time to any part of the body. Even with no cancer showing up on any scan of the body it can come back, in a matter of weeks, months or years. And that to me is the scariest part of this disease. What was also very scary was the aggressiveness and the quickness that it spread once it had metastasized.

My wife has diligently kept a blog because I have a large family and rather than give updates on my progress individually its much easier to direct them there./www.sinuscancer.blogspot.com... There is alot of info there on the treatments and the side effects if you would like to read more about it. Please tell your hubby to get scaned every so often because nobody is ever really cured of it. If theres anything I can ever do or any questions you would like answered I would be happy to.

reply to post by JohnnyCanuck

I do realise that. Some 94% of people do not survive my favourite (and probably of my own making, had I known I was smoking radioactive tobacco)) cancer, and that is all WITH the treatment. 94% of patients do not survive the 5 year mark, official figures.

Welcome back dude
And congratulations on your victory
It's said to fully appreciate life one needs to have first faced death
Give thanks for every day and make the most of em bro

Wonderful news of your recovery Warrior!
Hope your homecoming here is a long, healthy,happy one!
Peace & love to you

Thank you everyone for the encouraging welcome! I met with the head and neck surgeon a few days ago and had another Brain MRI and CT scan. The doctor said that the sinus tumor did not light up when i was injected with the contrast dye and was most likely dead tissue stuck up there. I have my surgery scheduled for the 26th where they will put me under and remove the mass with a endoscope. He said it would take an hour or so and that its good that the tumor has moved up and not back further where theres lots of small bones and arteries. I was thinking of asking him to put it in a jar as a paperweight or something crazy like that...heheh. The mass in my right lung is now just a tiny spot that he also thinks is dead tissue. The gamma knife they used for my brain tumor is not instant and takes 6-8 weeks for the tumor to disappear. I dont have any new tumors or metastases anywhere and my body is healing up slowly but surely from the Biochemo.

Even though I'm not totally outta the woods yet, when i take a step back and look at everything that I've been through the last 6 months I can't help but marvel at the fact that I'm still alive. Tears are falling on the keyboard as I type this. It took nearly dying for me to fully appreciate my life and the people in it. I'm a stubborn person by nature and even though I was having nosebleeds and progressively worse headahes, I did not go to the ER until the sinus tumor had almost grown into my brain. I was worried about missing work of all things. My ears still ring constantly from hearing loss due to some of the drugs I was on. I still have headaches even though the tumor is dead because of destroyed tissue and nerves in my sinus cavity. I can't feel my feet or two of the fingers on my left hand because of neuropathy from the chemo, my bones still ache from the marrow trying to repair itself, I still have almost no energy. My hair is a different color, I'm just now starting to put some weight back on because the treatments make you physically sick to your stomach, even smelling food makes you throw up. For 4 months while on the biochemo my skin turned Red as an apple and peeled off like a sunburn constantly. Not to mention watching my wife cry herself to sleep every night as I layed in the hospitol bed miserable. And you know what? I'm grateful for every bit of misery. Every bit of adversity I've went through has taught me some important lessons and strengthened my faith and relationship with God. And I believe that all the problems I've dealt with in life up until then has prepared me for dealing with Stage 4 cancer. It has taught me that there is no shame in letting other people help you when you're down. It has taught me that there is alot of people in this world who may not know you personally but do care and WANT to help. Before, I was a very cynical person when it came to people and their intentions. I've learned to be happy because it really is a choice in the end. I know it sounds strange, but as unlucky as getting cancer is, I'm such a lucky basterd for getting it.

I've lived through some things in my 33 years that I probably should not have. So that tells me that I have some kind of purpose here yet to be revealed. I can only hope that I have the oppurtunity to help someone and to give back as much as I can of the blessings I've been recieving from my friends and family and even strangers. God bless each and every one of you ATS, I'll let you know how the surgery goes

reply to post by FlyersFan


I just had the tumor removed from my sinus yesterday. It was about a 3 hour operation and the doctor said there were no signs of active disease in there!!! I'm really sore and there is alot of scar tissue and exposed bone up there, but I'm alive!!! On the M.D. Anderson website, it lists sinus melanoma as a "very low survival rate". Please make your hubby get scanned if he does'nt already. An early detection could make a big difference in treatment.

I remember your first post about your cancer, so very pleased to hear things are going well/ I have a grade 4 Brain Tumour so can understand the "facing your own mortality" bit.

It's funny all the things it makes you consider, what I find strange is how quickly I forget about it all and returned to taking life for granted. It was only 4 years ago I was being advised to write my will. Seems like a lifetime ago.

So thanks to the wonders of modern medical science I'm still around and I'm sure with the treatments your receiving, you'll be around for a long time to come.

Best of luck with the rest of the treatments, sounds like you are in good hands.

reply to post by woodwardjnr


Wow, do you still have it? Is it operable? The one I had on my brain they caught very early it was about 5mm across. So I opted for the gammma knife procedure. Thanks for the words of encouragement bro, Cancer cannot kill the spirit.

Cancerwarrior,

Sorry to hear you have such a rough time of it. Have you been scheduled for a operation yet?

reply to post by somerandomuser


Yes!!!! It was about a 3-hour operation and the Dr. said there were no signs of active disease and the tumor was mostly dried black dead tissue. I'm still pretty sore and stopped up with alot of drainage, but I'm alive Theres still exposed bone and tissue and nerve damage up there but hopefully it will heal up over time. Heres a link to a youtube video showing them doing endosopic sinus surgery if anyone is interested...

www.youtube.com...

Its kinda gross to watch, but I think its pretty amazing that they can do this without cutting on the patient. I have to go back in Feb. for another PET scan and when that comes back clear, i'm having a "screw melanoma" party.