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


clarkk62 - (5/26/2010 - 6:16pm)

I wish you the best of luck!

martie - (7/7/2010 - 5:11pm)

Hi Jolaina,

I was diagnosed with melenoma in May of 2010. I am not getting a treatment as of right now, but, I have to go back in 3 months for repeat scans and work up.

It's the not knowing and the uncertainty that is hard to endure, and, like you I just keep praying and praying!

I will remember you in my prayers,
Sincerely yours,
Martha Bruinsma

Never speak in anger.
Be still and know that I am God!

Misty Dobson Duanes sister - (7/9/2010 - 12:01am)

You are not alone. You have come to the right place! I feel for you and I will pray for you .
My Brother left this life January 30,2010 and I promised him I would continue fighting Melanoma in his name, I told him I would tell everyone how amazing he was/is.
Misty Dobson Duanes Sister

Elise - (7/20/2010 - 7:58am)

Hey.I read ur post and it popped out at I joined so I could reply.firstly my name is Elise I'm 23,I live in Australia. I was diagnosed with stage 3 malignant melanoma in 2007,four months after I got married. I had a heap of lymph nodes removed from my neck,most of which where effected.the primary was a mole on my scalp which I also had removed in 2007.all seemed good until 2009 when I began getting sever abdominal pains,tests revealed it had made it's way to my smal intestine.a few tumors where removed and this made it stage 4.again things felt good until early 2010 when we discovered it had made it's way to my elbow and knee. This has been more difficult than my first few times.I guess because I can't do alot exercise and it's a daily reminder.I'm now thinking about entering a trial(braf).I have a tiny nodule in the fatty tissue around my this will b what they will be watching thru the trial. That's a little about my are you since ur post? It made me smile when I read you know God is looking after you! God is only hope thru all of this.I'm blessed have an extrodonary family and church,Who support me with words of hope. I will defiantly think of u and pray for not just strength and peace but a healing! I love hearing hope filled journeys,I'd love to hear urs!

- (5/4/2011 - 8:25am)

Hi Jo. Your story sounds so similar to me. My brother just went through this last year. God bless you. This really is a monster

- (5/20/2011 - 9:19pm)



My only two daugters are both Stage IV Malignant Melanoma. My oldest daughter presented with Nodular Melanoma on her back, she then had Interferon for 1 year, then found mets in her stomach, she had 5 tumors the size of grapefruits removed, they were not able to remove all of the tumor mass, left part of one tumor about the size of a walnut, from her stomach she developed mets to her brain, in 2 different lobes. Since all of the mets, and the stomach surgery, she has had a controlled protocal of  IL -2 in combination with Temador and other drugs, administerd by Dr. Samlowski, of the Nevada Cancer Institute in Las Vegas Nevada. She also had 3 brain surgeries and 2 Gamma Knife surgeries....she has since been free of any metastatic disease for the past 18 months. She just had another MRI of the brain this past week and she is still clear, and will be due for a PET scan the first of August. Dr. Wolfram Samlowski, is one of the foremost Melanoma specialists in the U.S., he is on the cutting edge of treatment protocols. I don't know where you live, but if at all possible, get in touch with him. You can go on the internet and see his credentials, this man is amazing. He just recently left the Nevada Cancer Institute and is joining another treatment group in Las Vegas, if you can't locate his number, please get in touch with me. My youngest daughter presented with a large sub cutaneous tumor on her forearm, she also had Interferon for a year, her primary site is still unknown, but she has been clear for almost 6 years. Both of my daughters went to the Huntsman Cancer Center in Salt Lake City Utah,  prior to seeing Dr. Samlowski in Nevada....they are alive because of him. Don't settle for anything less than the very best. You are in my prayers.

Nancy Bennett

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.


- (6/22/2011 - 1:37am)

Keep strong, lady.  My thoughts are with you. 

Leslie in Arizona (melanoma removed from my scalp, keeping fingers crossed every day)

- (6/25/2011 - 9:31am)


I too had stage IV metastatic melanoma diagnosed in August 2005. Took temadoe for 6 months and it seemed to be working. One day I was told the cance was not responding to the therapy. My Dr. got me into a trial for ipilimumab. Dr. Wolchok from MSK has been treating me for 5 yrs. Ipilimumab, now called YERVOY, has helped me and many others survive without surgery.

Tell your doctor about Yervoy. It works. I had only 3-5 months to live once I was diagnosed. Don't give up. Go to the site. There is alot of good things out there. YERVOY is one of the. I swear by it. Tell your doctor to look into it. Tell your doctor to contact Dr. Jedd Wolchok at Memorial Sloan Kettering. Tel. # 646 888 2395.

Good Luck and God Bless.

Tom Telford

- (6/25/2011 - 12:01pm)

Hi Jolaina,

How are you and I feel for you. Right now my sister in law is in almost the same position. But she or us, her family, husband and children are not giving up We hold on to each other and are looking for other options now.

We, in the netherlands, heard a lot of the progress in this area in Germany, I don't know your situation now or if you undergo treatments in the States  but maybe you can read about the treatments in Germany, via the different websites, you never know what the outcome can be.

In the meantime I wish you strength and courage!


- (7/9/2011 - 10:28pm)

Hi Jolaina,

I was just reading your story and was wondering how you are doing? My brother Mickey is going through stage 4 metatastic melanoma and did 2 rounds of IL-2 and yes it was a horrible experience for him as well. He will be starting another treatment on July 11, YERVOY. The melanoma started on his back and also they did a PET Scan and it had spread to his adrenal glands. He got his results from his 2nd PET Scan after the IL-2 treatments and the tumor on his back his active but stable, the mass on his adrenal gland his active but stable but his lymph nodes are larger, so to us that is good news. Now we see how Mickey responds to the YERVOY treatments. 90 min IV drip then he goes every three weeks as out patient. Please let me know how you are doing i will be praying for you.



- (7/27/2011 - 9:30pm)

Jolaina,  I had melanoma (stage IIb) -- my story is also on here -- and since my treatment in 2008 with Interferon, have not, fortunately, had any sign of recurrence.  I wish you for you, the best medical support, and treatment (I had wonderful medical support at the Seattle Cancer Care Alliance affiliated with the University of Washington Fred Hutchinson Center).  Treatments and care are getting more sophisticated and better everyday.  And I hope that  with the next generation of continued diagnoses, research and treatments will continue this trend to the ultimate goal -- finding a cause and cure.

But, please talk to us.  I think this is a forum for everyone -- and this means YOU.  I understand your fears.  We are a family that has been rocked with melanoma (my mom, my uncle, my first cousin, with metastic melanoma). We can only fight.

- (8/13/2011 - 8:54pm)

keep fighting, I too was being treated at u of M and know I am headed to Bethesda to see if I can get into TIL trials. If you need to talk, I will listen.

- (8/22/2011 - 11:50pm)

HI Jolaina,

Wanted to say be strong and best of luck as you fight this monster.

I'm being treated at University of Miami for Stage III Melanoma.



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

- (3/29/2012 - 7:32pm)

Well i totally forgot about this site until facebook reminded me it was here. My update is pretty extensive since i posted this. After Il2 didnt work i went to NIH for TIL. High dose chemo with IL2 then to be told it spread to brain and eye and lungs. Did ipi and it slowed it a bit but
now facing the poss craniotomy. Had SRS and radiation to eye. My life is so different now. I face anxiety daily with any little pain its automatically thinking its melanoma. Oh how i wish i was that girl in the photo you see unfortunately warriors have battle scars and boy do i.

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

Wanda C. - (7/14/2014 - 8:20am)


A nurse who works at the National Institutes of Health in Bethesda, Maryland

(301) 496-4000 told me that there is a Dr. Rosenberg there who has great

results with Stage IV melanoma treatments. They have different clinical

trials going on through NIH all over the country.

(800) 411-1222 is the number for patient referrals


It might be worth giving them a call to see what they suggest.


Will pray for you! 

Francyn - (6/2/2016 - 10:44am)

Just diagnosed Stage IV MMM. In lymph nodes on the left side of my groin and abdomen. Unknown point of origin. PET showed no cancer in bone, lungs, brain, etc - just nodes and a lot of them. Waiting for BRAF results to determine treatment - immuno or target. Only have had one consult with oncology - getting two more tomorrow, then next week at U of Michigan.  You mentioned U of M - which M? What system? Looking for support network and partners in this journey. Thanks for sharing your story. i've started a to share my story and recorded several vlogs, but not sure about posting them. Good luck in your battle and pave the way for me. We'll fight together!  Francyn