Stage IV, how could this be!!!

Well, where to begin, at the beginning. I had this mole on my right upper arm, it had been there for years. I would look at it, and know that it wasn't right; and that little voice kept saying, "go, go have it checked." In May, 2009 I went to my primary doctor and she did a biopsy, calling me the next night and telling me I had melanoma. I had no idea that it was as serious as it was. She sent me for a chest x-ray and blood work, all were fine. I went and had a wide excision done - they went right to my bone - I knew then that this wasn't alright. They checked 3 sentinel lymph nodes; all were fine. My surgeon assured me that it couldn't spread in my blood, and that I was just stage 1. Things went along fine, and then in November, I woke up in the middle of the night feeling this ball in my abdomen. I went to see my doctor - she sent me for a CT scan, then to the surgeon. None of them expected it to be melanoma - it was. I was then sent to an oncologist and I thought he was going to tell me it was stage 3. But no, with almost tears in his eyes he told me it was stage 4, metatastic melanoma. I felt so helpless. How could this be happening? Well, I buckled in for a long ride. I went to U of M and met with a great team there. They advised me of the treatment options - no chemo, just clinical trials and IL-2 - I opted for the IL-2. That happened in January, 2010. It was a horrible experience. My blood pressure was extremely low, 60/30, so they put me on dopamine, and every 15 minutes a nurse was there checking me. I prayed and prayed. I knew God was there with me. I made it through 5 doses each time. I am home now, waiting. I go for another CT scan in February and back to U of M on March 10th. I guess at the 3 month mark, which will be in June, they will decide if I have to do the IL-2 again. There are no mets, yet, on my vital organs; but I have 2 tumors - one on my shoulder and one on my leg, which both seem to be getting larger each day. I don't know of anyone I can talk to so I came here and got a lot of information. Please keep me in your prayers. I am going to fight this MONSTER!!! Thanks for listening. Jo


katsilver3 - (5/22/2011 - 11:33pm)


Your story is amazing and shows your strength and faith.  Please let me know how you are....  Praying....a friend in Texas.


gtown - (5/24/2011 - 12:28am)

Hey what's up,

 I understand you're feeling about not being able to talk to anyone. I'm presently waiting fort the results of my sentinel node biopsy and I'm worried sick. I could kick myself in the ass because like you, I noticed it and just forgot about it everytime I went to tthe doctor. Anyhow have to just deal with the present. Be strong and give it your best. There's always someone to answer any questions on this site.


concernedaughter2011 - (10/3/2011 - 5:18pm)

Hi, I just read your post. How are you doing? 

Your story brought tears to my eyes. You are very brave. I know that God is with you. 

I am praying for you!

"Trust in the LORD with all your heart and lean not on your own understanding." ~ Proverbs 3:5

michelethomte - (11/9/2011 - 1:12pm)

wow, i am having a sentinel node biopsy next week and assumed if that is clear i would be fine....scary stuff.  i just got diagnosed a few weeks ago, we have to go into the mucsle to remove the rest of it, and also am currently waiting on results from one he removed on my butt......i put this off for about 6 months, and glad i finally went in, but it wasn't for that, i hurt my foot and its not healin so i thought i would ask about my arm at the same time.  i just found this site and it seems very helpful....vent all you want, thats exactly what helps....good luck and keep your attitude up!  ill be watching your progress :)

Tamarah - (1/15/2012 - 12:02pm)

Hi, My name is Tamarah and my partner, Shannon, first had melanoma removed in Feb of 2011 from her back, another on her side, and two sentinel lymphnodes removed which came back clear.  Then we went for our annual mammograms and her's came back with something which a sonogram and biopsy showed to be melanoma.  That was November of 2011.  She had the lump and all of the lymph nodes beneath her left arm removed.  They analyzed 25 of the nodes and one was cancerous.  They sent us to a medical oncologist and since she currently doesn't have measureable cancer ( apparently PET scans only detect if they are a bigger than a certain size) there is no way to measure the effectiveness of any treatment options.  So we're approaching from a nutritional angle.  I read a book called Anti-Cancer, and it explained that author's perspective on a cancer cell's growth. What I got from the reading was cancer cells need inflammation to grow.  And the second thing I got was we all have cancer cells and our immune system finds them, breaks them down and dispells them.  So I decided that we needed to focus on anit-inflammatory foods and nutritional supplements, and foods and supplements that boost the immune system. Shannon is taking Green Tea capsules, Tumeric capsules, Q-10, Flaxseed oil, and Coral calcium.   Additionally we are buying grassfed meats, Omega-3 enriched eggs, and organic omega 3 enriched milk.  Some fruits and vegetables can be cleaned free of pesticides etc and don't need to be organically grown.  But some foods, like berries, broccoli, apples need to be organically grown to be free of bad stuff.  My theory on ridding our diets of hormones and pesticides etc is that Shannon's immune system doesn't need to be fighting the bad stuff in what we eat,  It needs to be fighting the teeny tiny cancer cells that could grow to be melanoma.  I don't know if we're on the right path, or if it will do any good, but I thought I'd share this information.  I believe that to fight cancer we need to have confidence in our medical providers, we need to have a strong support system, we need to have a positive attitude, proper nutrition and a strong spiritual path.  That's what we're trying.  God bless you and may He make the way to your healing be open.

Be the change you want to see in the world.

lynnell_sherbie - (1/31/2012 - 10:45am)

You are in my thoughts and prayers. God bless.

- (2/28/2012 - 2:27am)

Hang in there Jolaina, I don't know what else to day.  You sound like a warrior  ready to do battle and you are very pretty. Recently my Dr just told me that the  " age spot" on my neck is  a  actually a mole and I could read his face as to what he thought of it. I have been asking him about this for 2 years.  So I insisted on a referal to a specialist as the mole is irregular, two toned , new , growing and the plastic surgeon said it looks suspicious and must come off for a check asap. Now I wait and have to deal with the feeling that this was so avoidable as I have 2 young teens na dthe job is not yet done. 

Keep fighting ...Ros

islandbreeze - (10/30/2012 - 5:30pm)

How are you doing today? I relate to your changes looking through cancer cells.

Time is a versatile performer. It flies, marches on, heals all wounds, runs out, longer then rope and will tell.

blden2186 - (9/5/2013 - 9:49pm)

Very sorry to hear what you are going through. I see Dr. Armatruda who is associated with U of MN. I have stage 3c site is left leg. I try to think of it as a chronic illness otherwise too over-whelming. Be good to yourself. Beth