MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

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Jubes's picture
Replies 7
Last reply 11/20/2016 - 6:05pm
Replies by: SOLE, Jubes, Bubbles

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18 NOV 2016 - 1:36PM

Melanoma diagnosis in hours with new test

 

 
Melanoma patients will be able to receive targeted treatment within hours with a Melbourne-developed new blood test that acts as a non-invasive biopsy. 
Source: 
AAP 
18 NOV 2016 - 1:36 PM  UPDATED 5 HOURS AGO

Advanced melanoma patients will be able to get a diagnosis of how far along their cancer is within hours, not weeks, thanks to a new blood test.

The "liquid biopsy" blood test was pioneered in Victoria by the Melbourne Melanoma Project and has saved lives by telling doctors almost instantaneously what melanoma mutations exist in a patient's DNA.

That information is then used to treat them with targeted medication for that strain of melanoma.

 
 

Normally surgical biopsies can take up to three weeks to give doctors that information.

The test is now available to advanced melanoma patients through the Olivia Newton John Cancer Wellness and Research Centre and has had impressive results.

Medical Director of the centre, Professor Johnathan Cebon said a severely ill melanoma patient recently managed to get treated within hours after the centre did the test.

"He was on death's door and literally on the following morning he was able to sit up and have breakfast," Prof Cebon told reporters on Friday.

The test is also used to track how treatment is progressing, giving doctors a visible view of how many mutated genes exist in the blood stream over time, tracking the cancer's retreat.

Researchers are confident the test can be applied for other cancers, with tests already underway to see if it can be used for lung cancer.

Currently it is used on advanced melanoma patients but researchers believe the test will help in diagnosing early stage melanoma too.

Touring the facility on Friday, Health Minister Jill Hennessy called the test a "very important breakthrough".

About 1400 people die from melanoma in Australia every year.

 

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Anonymous's picture
Anonymous
Replies 0
rayofsun0777's picture
Replies 1
Last reply 11/20/2016 - 1:21pm
Replies by: Anonymous

I'm fair skinned, freckled and a strawberry blond. I am 38 and grew up in a time that a peeling sunburn was a badge of courage. Different times. When I was 16, I was burned very badly on my leg by an exhaust pipe. 3 yrs later an fleshy nodule appeared. It was removed and biopsied for fear it was BCC. It was negative. the lump returned and years later was removed again. Still know issues. Last night I was shaving my legs and saw a very dark freckle on the scar area. I examined it further after getting out of the shower. It was small (2 mm) but struck a cored with me, as I'm very used to my freckle colors and it was distinctly different. Then later that evening, my boyfriend noticed it too and was drawn to it. Clearly it's new and an ugly duckling relative to everything else. I'm trying to stay calm until I can get into see a dr, but I can't help but be anxious. Have any people here had melanoma on thermal burn scars? 

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stephlovins621's picture
Replies 6
Last reply 11/18/2016 - 9:10pm

Back in 2013, I noticed a mole on the left upper side of my back. Being an ignorant fool, I disregarded the fact that it was growing and continuing to look suspicious up until July of 2016 when I finally had it removed. The look on the dermatologist's face said it all, and being a nurse myself I knew ultimately what I was up against. Needless to say, she removed the entire mole for good measure and confirmed that it was in fact melanoma. 

I'm currently 29 years old with a 6 month old baby girl so hearing this sent me into a full blown panic. I felt such anger towards myself for feeling invisible to sickness; I should know that in my line of work, I see people of different ailments at different ages every day! Why didn't I get this taken care of earlier? 2016 blessed me with my daughter, but now is the year I'm reminded of how health isn't something to take for granted. 

I met with the Melanoma Cancer Center at the University of Michigan in August and was told my mole was 0.81mm Breslow thickness, however the way the mole was presenting, they suggested performing a wide excision as well as a SLNB to rule out any lymph node involvement. Of course I was given a 5-6% chance that it spread so of couse I felt relieved! 

Guess luck wasn't on my side...the wide excision showed no traces of melanoma (which was to be expected) however the SLNB showed that THREE nodes in my left axillary lit up and had 1% of melanoma. If it had been a 1% spread to one lymph node, they said they wouldn't have given much thought to it, but the fact that three nodes lit up changed the treatment plan. Again, I felt like a fool thinking "of course it'll come back negative and all I'll need to do is skin checks for the rest of my life! No big deal!"

I'm awaiting the call to schedule my CLND to see what exactly we're dealing with. I'm not going to sugar coat it--I'm terrified. Regardless of the results of the CLND, they're referring me for further treatment where they'll suggest either Interferon or "waiting it out". I'm trying my best to stay off the internet, it only makes me more fearful, but it's the planner in me that wants to be two steps ahead already prepared. It's scary to think about cancer cells potentially floating around, having absolutely no control over them. I pray that perhaps the 1% is on my side? To give me some glimmer of hope? 

Regardless, my heart and prayers go out to the victims of melanoma fighting the good fight. I thank you for your time in reading my message and please know that even though we have never met, I'm thinking of you and praying for you. I'm thankful for this site to use as both a resource as well as a support system and I'm thankful for any tips or advice from you all :) 

 

Stephanie

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Anonymous's picture
Anonymous
Replies 2
Last reply 11/18/2016 - 8:58pm
Replies by: Totally Blessed, Janner

I know that all new spots need to get checked out and I plan to do that but in the meantime, am just hoping to get some opinions and knowledge based on this terrible disease.

History - I have not had a melanoma but had a BCC removed in my 20's. Due to that and family history of melanoma, I go for skin checks every six months. Have had moles removed and a couple come back as atypical but thankfully, nothing else. 

Given this, I check my skin often.  This morning, I noticed a brown "patch" / spot / area, on my upper back, I estimate it be a good 1-1.5 inches long.  It doesn't look like a mole, of which I have a fair number or like anything else on my skin. I am 99% certain it wasnt there just a couple of days ago!  It has very defined edges from where the browness is separated from my normal skin color. It's rectangular shape and almost looks like a burn mark from something hot, however I wasnt burned with anything there.  

My question is, can melanoma go from entirely non visible, nothing on the skin to something that large and clearly visable, essentially overnight?  Or does a "new" spot usually start small and then grow from there?

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Lentil's Mommy's picture
Replies 3
Last reply 11/18/2016 - 3:22pm

Hello! I was diagnosed with stage 4 metastatic melanoma in July. After a neck dissection with the removal of 96 lymph nodes, and a round of SRS radiation on my brain, I started Pembro. I am 2 treatments down and not sure what to expect going forward. One of my oncologists mentioned arbitrarily deciding a time to stop treatment, maybe after a year. The other suggested continuing treatment forever as long as it is working. I know I am getting ahead of myself, but trying to stay positive, and plan on best case scenario of what to look forward to if treatment works. I am 35 years old and have a 2 year old Daughter. I am grateful for everyday I have with her, but am struggling with the thought of not being able to have another child due to long term treatment. Any others with similar situations and advice? 

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Kristi A.'s picture
Replies 8
Last reply 11/18/2016 - 11:25am

Hello Everybody.  My name is Kristi. I am 30 years old, married and have a beautiful 10 year old daughter. I've been following this forum since March.  I have learned so much from all of you here and I really appreciate it. I will try my hardest to explain all of this the best I can.

On March 22,2016 I ws diagnosed with stage 4 malignant melanoma.  I am being seen at Mayo Clinic in Rochester, MN. Here is the rundown of everything that has happened since then.

1. March 22 - diagnosed with metastatic disease involving the left axilla, subcutaneous tissues, lungs, and bone. Initiated immunotherapy with ipi/nivo.

2. April 14- went to ER with pains below right lung. Tumor had swelled up from first ipi-nivo treatment. Given pain medication and sent home after 2 days. Also told they found a lesion on my kidney.

3. May 12- admitted to hospital for profound fatigue, severe headaches, nausea / vomiting,  and fevers. Underwent a lumbar puncture after no infection was found and they found swelling of the brain, Aseptic Meningitis. Also, underwent surgery to have gallbladder removed after 3 stones were found. I was put on steroids and my fevers and headaches went away. This was a 9 day hospital stay.

4. May 27- reinitiated ipi-nivo but developed fevers and diarrhea, requiring steroid use.

5. June 22- decision was made to omit fourth dose of Ipi-Nivo and continue with just Nivo.

6. July 8-developed immune related colitis.  Stopped Nivo after one cycle and initiated steroids. Diarrhea gradually resolved and slowly tapered off steroids. 

7. September 7-PET scan showed complete response.  No tumors lit up at all. I was over the moon when  I heard these results.

8. September 9-reinitiated Nivo. Total: 3 doses of ipi-nivo, 2nd dose of just Nivo. 

9. October 7- PET scan showed progression.  Left axilla(SUV 3.5) and tumor in left lung(SUV 2.8) lit up again. Oncologist was unsure if the progression was caused by a break in treatment for two months or if cancer is just not responding any more. Decision was made to rescan in 6 weeks. If more progression is found, we will either restart ipilimumab or start braf/mek combo.  Was told they don't really want me to restart ipi because of the side effects I had on it before.

10. November 4-mentioned to oncologist that left axilla  seemed to be getting a little larger and noticed a couple of swollen lymph nodes in left side of neck. Oncologist decided to start Braf/Mek right away due to likely progression and keep me on Nivo in the meantime. Just waiting for my insurance company to approve the medication.

I guess what I'm hoping is that I can get some advice on whether or not I'm going about this all the right way.  I'm not going to lie.  I'm a mess and I've been trying so hard to deal with all of this but I'm beyond lost right now.  I have no idea if I should really be starting Braf/Mek so soon without a lot to go off of. I have had 3 doses of ipi-nivo and this Friday will be my 7th just Nivo treatment.  The lymph nodes are still a little swollen and left axilla doesn't seem to be getting bigger or smaller, just staying the same. I've been debating whether I should email my doctor to see if we should do another scan before starting Braf/Mek, or just wait for the meds and do that. I just don't understand how it came back so quickly after getting a complete response from the ipi-nivo.  

If anyone can help me understand this and let me know if I'm doing the right thing when it comes to the next step to take, I would greatly appreciate it.  I know all of you here are very knowledgeable about melanoma and I feel like your the ones I should be turning to right now. Sorry for the really long post. 

 

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davidstewart's picture
Replies 7
Last reply 11/18/2016 - 8:17am

I have metastatic melanoma, treated with 2 infusions of ipi/nivo last fall.  Recently experienced inflammation of the meninges of my brain, causing significant neurological impairment; was hospitalized; experienced a major seizure and was placed on anticonvulsant medication (KEPPRA). Treatment with high dose steroids brought the swelling in the brain down and is allowing return of functioning.  They do not think it is metastatic cancer, nor sarcoidosis, but a delayed side effect of ipi/nivo treatment. Hopefully as steroids are tapered the swelling will stay down and I will return to normal.

Questions: Has anyone else had this?  What treatments were used?  What was the outcome? Does it have any significance for prognosis?

History:

I was diagnosed with metastasized melanoma August 31, 2015.The PET scan showed cancer in lymph nodes, bilateral pulmonary nodules and a right adrenal lesion. The brain was negative for intracranial metastases. I had my first infusion of ipi/nivo on October 2, 2015. Colitis was addressed with low dose steroids.  Second infusion was December 4, 2015. Colitis was treated with high dose steroids. High fever and disorientation led to hospitalization for a few days at the beginning of January, treated with high dose steroids.  At the end of January I came off the steroids and was feeling much better. There was only a small nodule in one lymph node. 

PET/CT scan on January 28, 2016 revealed findings of concerns in the lungs. . A pulmonologist performed a biopsy and diagnosed it sarcoidosis, mild and no treatment necessary.  Some problems with kidney functioning resolved on their own as well.

At the end of this past summer I began having visual anomalies such as small illuminated letters that when I examined them would persist and  I eventually got used to them. More recently I was frightened by driving and not seeing a truck in the right-hand lane. I was having a medium range constant headache that lasted about ten days. When I began having difficulty finding words and doing routine tasks, I went  to the ER.  They checked for strokes/tumors did not find anything and released me with the tentative diagnosis of TIAs, small strokes that leave no permanent damage.  Two days later my symptoms became worse, went back  to the ER and was admitted.

I had multiple neurological problems – not being able to understand or comply with instructions about touching my nose, moving my foot in a certain way;  could not understand questions like “how many pennies in a dime”; difficulty forming sentences, finding words; identifying common objects and the peripheral vision in my right eye was virtually gone. Possible diagnoses: leptomemingeal carcinomatosis, sarcoidosis or inflammation as a side effect of ipi/nivo.

High dose steroids brought a beginning decrease of symptoms but then I had a major seizure and have been placed on antiseizure meds (Kepra).  Am home and am continuing to improve but still not back to the mental acuity before this episode. (My wife is helping me compose this.)

Thanks for any information.....David

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jag's picture
Replies 9
Last reply 11/18/2016 - 4:27am

Hello ladies and gentlemen,

Anybody reading this, I would just like to say that all of my life, I have been a bit of a retarded clown so just imagine some idiot with a red nose and a horn jumping around writing this and bear with me. I am just posting this to hopefully pass on the good news, inspiration, hope to somebody else, some people might be entertained and some might shake their head and say here we go again with this idiot.  Very happy to be above ground and over 40.  Now I can say things like "In my day, we didn't have all of the fancy schmancy immunomodulators and targeted molecular treatments like they do now".  I have attached a patnet of my treatments just to put it in perspective-back in those days I wasn't the only one who went through this much misery- Charlie S is a perfect example.  Everybody was miserable in those days, but we were all in it together, we ate dirt and we were greatful.  Lance Armstrong was the hero, men were men, and sheep were scared.  I thought I was a goner when I first got mets to the brain.  My license plate at the time was 1 lung which was pretty catchy I guess on account of it getting me out of a bunch of speeding tickets.   I had already had 2 lung cuts- the second one took the whole left side.  In and out of that, I got some pretty miserable scriptions called Biochemo and IL2 I think .  But the lung removal took a lot out of me, and then there was more to come.  The whole time, my wife propped me up like a scarecrow and the crows were dropping them terds all over me-she'd clean me off and put me back out in the fields again.  Then into the brain I tell ya.  Not good into the brain, but life is hard so they zapped me with a crown bolted into my head, cut me and and I still got up-6 more times.  Each time a little lower IQ then the next. couldn't feel ma left leg after #3 and needed a cane.  Eventually I was having the fits, lost ma job, and was on the Dilantin, that had me seein purty colors and dizzy so they changed me to some new scriptions which eventually worked.  In the meantime I also had the temodar and gave maself injections.  This all happened and when they finally got rid of the tumors, my last 2 surgeries were to get rid of the radiation dirt.  We lost plenty of good ones in those days too.   Hate to think about it sometimes.  Don't know why God picked me to make it.  Inside the whole time I had the spirit telling me I might just make it, and I did-no fancy dancy pants treatments either. Last 2 surgeries were just the necrosis and dirt from the zappin.  I got ma life together went back to fixin cats and dogs.  Me and ma wife started a business (see here)

http://gsvmobile.com/

the day after my last brain surgery somebody called to make an appointment I answered the phone from my hospital bed(no lie) and told them that I wasn't going to be available for appointments but they waited.  By that point I came to realize that melanoma was more like a chronic disease that you manage and hope for the best and just keep on living.

Then we had a chitlin named Jedd-see here

(got to scroll down a ways)

https://www.fredhutch.org/en/news/hutch-magazine/2013-12/revolutionizing...

Best little critter you ever did see.  The little house we bought after the weddin(600sqft-literally we had to walk outside to the basement to do laundry) and brain cut #3 didn't hold up to the critter so we wrecked it to get him a proper bedroom (see here)

https://www.youtube.com/watch?v=MeidUhsc5_Q

and had a new one delivered on the back of a truck.  See here.  

https://www.youtube.com/watch?v=XQbR8CUfKUk  

Life is good again, despite terrible odds I made it-even without the new treatments available.   If a clown like me made it, you can too, keep on pecking away at it.  As time goes on, the more I read, the most helpful things you can do for yourself are, keep active(you want to be able to get out of bed every day, crunches and pushup are helpful, and over time, melanoma can really wear you out., have a low stress level, eat in moderation a wide variety of food low fat/red meat hight in vegetables and grains-there is a new superfood everyyear-so don't pin your hopes on cocoa milk, keep your eyes open for new treatments, surround yourself with good doctors and a good support group ( I used to have my e-mails tuned to google alerts for melanoma survivors and new trials on a daily basis).

Despite change of treatments, the one thing I can say is that the people fighting this beast today are as tough as in the past.  Luckily there are more people sticking around.  I hope there will be even more going forward and the people on this board continue to improve the statistics to the point where unless you deny all treatments(or kill yourself) you have no excuse but to be alive.  I'm also happy to see that there are now a variety of less punishing new treatments in case it comes back-so I feel a little safer.  

I am also proud to say that I am now have had and beat the trifecta of skin cancers, Basal Cell, and Squamous Cell have been added to the list and crushed.  Oh and my derm biopsied a scalp thing which came back as ink (from my brain surgeries) I didn't even know they put them there but you learn a lot about yourself everyday.

There is life after(and during) melanoma treatment even stage IV with brain mets.  These days, I think about melanoma once in a while and tell my story to people (which even I cant even believe unless I feel the scars on my head)-only if they ask.  Meredith and I went on our first vacation in 4 years this March. I feel guilty wasting my oncologists time which could be more focused on treating actual sick people.  I now have old age problems like everybody else (had to get glasses for reading last year).  After 10 years you graduate-even from yearly checkups.  Jedd will turn 4 on May 5, and he is a true blessing. 

God Bless every last one of you and thanks for letting me live to post this.

John

I will leave you with this.

https://www.youtube.com/watch?v=Akec_5zCgso

 

       I am

the patient
Initial Diagnosis
June
Initial Diagnosis (year)
2003
Current Stage
Stage 4
Depth of Primary
1.2cm ulcerated
Treatment History

6-20-03 Resection of right upper back primary 13mm in depth. Clarks level 4 Subsequently had wle and sentinel lymph node biopsies (neck and axilla) which were negative(actually diagnosed w/melanoma on 30th birthday!)

1-30-04 Adjuvant cancer vaccine trial at the University of Virginia (Mel 43/without GMCSF)

09-07-04 3 new left lung lesions ->VATS resection. Pathology + for melanoma

01-10-04 tadpoles on ice.

10-11-04 3 New tumors left Hilum, treated w/6 cycles of Biochemotherapy, Cisplatin, IL2, temozolamide, INF, and vinblastine. Initial Partial response had subsequent disease progression

11-14-05 HD IL2 therapy x 2 courses. tolerated 10,8,7 and 3 doses during each cycle

05-04-06 left pneumonectomy complete excision

07-01-06 GMCSF injections

08-20-06 Brain tumor nodule 7mm left side SRS surgery performed

09-15-06 Attended Kushi Institute and started Macrobiotic diet.

10-01-06 repeat MRI initial tumor increased in size w/hemorrhage 2nd tumor in right frontal area

11-01-06 craniotomy and removal of both tumors followed with adjuvant Temodar therapy 1st tumor dxed as radiatoin necrosis not recurrenc on path.

01-01-07 recurrance of right frontal tumor. Both tumors craniotomy re-explored and removed followed by adjuvant Temodar and radiation boost

10-01-07 new tumor in falx cerebri Tumor removed via craniotomy. SRS to surgical site to prevent recurrence 2 weeks post op.

2-25-08 Recurrence or radiation necrosis in area of falx cerebri surgery. Surgery scheduled for 3-11-08 removal. No new evidence of disease in CT chest Abd since left Pneumonectomy. (May of 2006)

3-11-08 Tumor removal. Confirmed as new tumor as per surgeon. Not radiation necrosis. Pathology pending.

3-20-08 Fit for radiation mask and boost. Further consult w/Radiation oncologist 3-11-08 mass was marginal miss recurrence due to SRS boost. Thats why Radiation boost decided ATT.

6-16-08 MRI of brain, CT of chest abd/pelvis equals ALL CLEAR/NED.

8-01-08 Severe headaches head/neck. MRI of Brain/neck shows NED.

9-22-08 MRI shows possible swelling @false cerebri? approx 2cm in diameter

9-29-08 Craniotomy #5 radiation necrosis!

11-10-08 collapsing episode/partial seizure put on dilantin 300mg/day. currently doing fine MRI equals all clear.

01-07-09 partial seizure MRI equals NED. increased dilantin to 400mg qd.

02-12-09 Feeling very lousy, blurry vision, colors changing when reading, nausea, ataxia. MRI equals no change. Dilantin levels elevated. Switch to Keppra.

6-01-09 Still Seizuring on Keppra(actually moreso). Epileptologist upped meds to 1500mg BID adding lamictal hopefully tapering Keppra

ALL SCANS CLEAR > 1 YEAR

8-06-09

On Keppra 1500 mg BID, + Lamictal 150mg BID, CT and MRI clear

11-05-09 1250 Keppra BID, Lamictal 200mg BID, MRI clear.

seizure free since July.

03-04-10 CT/MRI negative! No seizures since July!

06-17-10 MRI still clear driving privileges restored.

08-30-10 weakness on Lt side, MRI shows edema in area of rt frontal lesion.
09-02-10 craniotomy # 6, residual tissue noted on path, final results pending.

09-07-10 Manliness evaluation: Shooting Blanks/luckily have tadpoles on ice.

09-15-10 Path of brain tissue negative.

10-08-20 CT Chest Abd Pelvis Clear

1-6-2010 Brain MRI much improved.

5-5-2012 Jedd Andrew Gallagher born! no melanoma since 3-11-2008

Doctor
Jedd Wolchok
Treatment Center
Memorial Sloan Kettering Cancer Center

 

Insert Generic Inspirational Motto Here

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SOLE's picture
Replies 16
Last reply 11/18/2016 - 4:04am

in the case of ulcerated primary tumors? And possibly low node burden? Got back from seeing a second oncologist today. Textbook answers. Who can blame them? But the thing about interferon is new to me. Celeste?

He also told me that since my tumour was ulcerated, there are malignent cells in my bloodstream. Is this how it works?

I am afraid to post again here but what the heck, for those of you fed up, you can just pass me by.

For the others, I am truly grateful for your replies.

Sincerely

Sole

 

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Anonymous's picture
Anonymous
Replies 1
Last reply 11/17/2016 - 8:47pm
Replies by: Janner

I was diagnosed 3b nov 2015. My original melanoma was on my back. Had wle on back but the wound opened and have a softball size scar on back. Noticed a small freckle by bottom of softball scar oct 16. Removed by derm nov 16 and it tested positive for melanoma in sit u. What would be the next steps. Is this a reoccurrance or brand new melanoma.

Thanks

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EJJ's picture
Replies 5
Last reply 11/17/2016 - 8:28pm
Replies by: EJJ, Kim K, Hukill, Janner, Anonymous

After 8 years NED and 10 years since first Dx of Melanoma today I received a call that one of my biopsies came back as basal cell carcinoma.
I begin topical treatment tomorrow.
Kind of at a loss of what to think.

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tkrepr's picture
Replies 2
Last reply 11/17/2016 - 12:25pm
Replies by: Holli, dvd

My brother-in-law is currently undergoing treatment for stage IV melanoma under the Opdivo/Yervoy regimen.  After his 3rd treatment, he began to develop severe side effects (severe fatigue, shortness of breath, severe insomnia).  His liver enzymes have elevated to ALT/GPT=1246 and AST/GOT=670.  He has had severe insomnia for over one week accompanied by hallucinations at night.  His doctor has stated that his ability to take steroids is limited due to complications from diabetes.  Due to a severe lack of sleep, he is at the end of his rope mentally and physically.  Sleep aids such as Ativan and Ambien have not helped. The doctors are discussing possibly putting him in a medically induced coma to allow him to rest.  He is completely miserable.  We are desperate for any suggestions that may help with these side effects.  Here are my questions:

1)  Have any of you experienced liver enzymes elevated to this extreme?  If so, did they improve?  Was there permanent liver damage?

2)  Does anyone have any suggestions to address the insomnia?

His melanoma, which had exploded prior to treatment has completely disappeared, so his big hurdle at this point is trying to get through these side effects.  Any advice would be greatly appreciated.

Terry R. 

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Gene_S's picture
Replies 0

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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