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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Replies by: jennunicorn

So I had a mole removed in November as I was suspicious of it and around that time I noticed a mole on the sole of my foot but it didn't look too suspious at the time. Recently I found another mole, a new mole on my foreskin(awkward) so I've been monitering it. As I was researching I came across the type of Melanoma that appears on the foot and it reminded me of the one I had on my foot. I decided to take some close up pictures of the one on my foot and I litrally couldn't breathe, it looks very suspious to me and I'm really starting to worry because of how long I've left it. I don't know how long it's been there overall.

 

I measured it and it's around 2-3mm.

 

Here's images hopefully soemone has some insite. I'm going to the doctors monday to get them to refer me to a derm. 

 

http://imagizer.imageshack.us/v2/1024x768q90/922/FeiUDp.png

 
 
 
 

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 1 year back detected with left eye choroidal melanoma with negative pet ct for any otherparts in body.so enucleation and left modified radical neck disection done.

but 1 day before pet ct suggestive of metastatic melanoma to both lobes of liver and left illiac bone.we are from india.

can you guide us which is the best hospital for further treatment in world/usa/india?

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jag's picture
Replies 8
Last reply 4/4/2016 - 7:58pm

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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DragonLadyRed's picture
Replies 2
Last reply 4/3/2016 - 12:10pm
Replies by: DragonLadyRed, Janner

Background: I was diagnosed with a melanoma in situ at age 18 (I'm 31 now) and have had many biopsies of atypical moles since, with all coming back mild to moderately atypical. None were particularly concerning to me, but my doc would point them out and opt to biopsy because of my history. 

A little over a week ago I was doing a skin check and noticed a small, very dark spot on my back. I reached back and tried to scratch it, thinking maybe it was a tick (it's getting to be that time of year here), but it wasn't. The rest of my moles are a medium brown color, so it really stood out. I pulled up a picture of my back from a few months prior, and the spot wasn't there in the picture. Luckily, I already had my annual skin check scheduled for the next day. My doctor assured me it didn't look problematic, but since it concerned me and I couldn't watch it closely with it being on my back, she removed it. 

I got a call a few days later from the nurse saying, "It's not cancer, but we want to re-excise. Your doctor can't see you for a month, so we're going to get you in with someone else." I said I was fine waiting for my doctor and preferred to see her, but they insisted I not wait that long. Which, of course, worried me, so I requested my pathology report. Results are as follows:

Diagnosis: junctional dysplastic nevus with severe atypia

Comment: H+E stained sections show a small highly atypical junctional melanocytic neoplasm with an increase in bridging of large, hyperchromatic junctional melanocytes with an increase in single cell melanocytes. The MITF immunostain shows a central focus of pagetoid spread. The neoplasm is not broad in nature and is not identified at margin, however, complete re-excision with a margin of normal skin is recommended. 

So this just means that's it's just an atypical mole and that after re-excision there's nothing to worry about, right? 

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Sukibear's picture
Replies 3
Last reply 4/13/2016 - 5:34pm
Replies by: Sukibear, Janner, Kim K

Hi,  everyone. I'm new and just received news that my biopsy revealed that my mole was, in fact melanoma - stage 2. It's on the back of my left arm. It was a newer mole...maybe 8 years ago I noticed it. But, in December I woke up with it itching and swollen. (And the parameters were lighter brown and spreader out beyond the black raised mole, but not the size of a pencil eraser )The itching was maddening! ...even waking me up. Because it was a mole, I was afraid to scratch it. So, I left it alone. It took me till two weeks ago (3months) to be seen by the dermatologist from my referring doc. They did a biopsy..but I saw three dark dots left behind in the hole. I tried to stay optimistic, thinking that it was just part of a normal mole left behind. I was wrong. 

I got the news today and they want me in for the excision on Monday. I'm glad it's  fast-- I want this thing out of me! I have a couple of questions..If they cut into the cancer during the biopsy, can those cells travel into my bloodstream? (They left a portion of the nevus behind) And what happens next? After surgery...what is my followup? What is the prognosis? 

Thanks to you all for your help, advice, stories,  etc. I'm just in a daze I think right now.  I me very thought it would happen to me...

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Anonymous's picture
Anonymous
Replies 7
Last reply 4/8/2016 - 5:53pm
Replies by: Anonymous, Janner

Hello guys.

 

I'm worried about something: I have an aunt who's had melanoma. She has quite a number of moles on her body. So does my father and grandmother (between 50 and 100), but none of them had the disease.

Although, my sibling and I have very few moles on our bodies, so I'd like to know if any of us should worry about FAMMM, CDKN2A mutation or pancreatic cancer risk.

Thank you!

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mary1233's picture
Replies 2
Last reply 4/3/2016 - 12:37pm
Replies by: Maria C, Scooby123

Battling low platelets since chemo, anyone know if Keytruda could be admininstered if low?  

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gcooperbl's picture
Replies 7
Last reply 4/1/2016 - 8:19am

So my dad got very bad news today....Pembro failed after three doses and it has spread to spine and gotten worse in brain. Doctor doesn't think Pembro will do anymore good, and it's having a bad effect on his body. He didn't even recommend chemo, we are devastated and we don't what to do. Palliative care I guess and make his last few months a joyful one. 

i hate this disease I hate it so much but we must continue to fight it and keep up the research

 

 

 

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OzzieK's picture
Replies 5
Last reply 3/31/2016 - 10:47pm

In the beginning of 2014 I reached out to this board for help after my then vibrant and active 69 year old dad was diagnosed with stage 3 melanoma after having a nodular growth removed from his back. After a wide local excision and the removal of several infected lymph nodes from his arm pit, the melanoma returned just several inches away from where the original growth had been. We knew it was very aggressive.

At that point and after much research and consultation, my dad began seeing a melanoma specialist in Los Angeles. With a new aggressive growth on his back, his doctor had the green light to immediately start him on Yervoy. The results came quickly and the growth began to shrink after the second dose. Unfortunately, following the third dose my dad began to experience severe diarrhea. He was immediately taken off the Yervoy and started on a short course of antibiotics.

At this point, some decisions had to be made. His doctor was involved in clinical trials for anti-PD1 (still months away from FDA approval), but my dad was not eligible.You see, a couple of years before he had been diagnosed with stage 1 LLC (chronic lymphocytic leukemia) during a routine blood test as part of an annual physical. While he had no symptoms of this disease and was seemingly not impacted by it in any way, he was still disqualified from being a candidate for any melanoma clinical trials. It was also discovered that the LLC may have weakened his immune system just enough to allow the melanoma to develop.

Because the FDA was very close to approving anti-PD1 and because my dad was not eligible for clinical trials, his doctor was able to start him on the drug as part of a program that allowed those otherwise disqualified from clinical trials to still receive the medication. Almost immediately, the growth on his back (which had grown very large at this point) began to melt away and eventually disappeared completely.

Fast forward to present day. My dad has been receiving 3mg of anti-PD1 infusions - now Keytruda - every 3 weeks for almost 2 years. He just had his 6 months scans and he is still NED. This summer, his doctor feels comfortable taking him off the Keytruda. During his time on Keytruda, with the exception of a loss of his thyroid function (easily treated with one pill a day), he has had NO side effects from the drug. He continues to bike, play tennis, and carry on with the active life he had prior to the melanoma diagnosis. Remarkably, there is also no sign of his LLC on blood tests!

I'm sharing my story now because I want to give others hope that positive outcomes are very real and very possible. The advancements in melanoma treatment have been nothing short of miraculous and they just continue to get better and better. Educating yourself to what's out there and working with specialists in the field who are at the forefront of melanoma research is absolutely key. No one knows what the future holds, but this much is true - advanced melanoma is closer and closer to becoming a manageable chronic illness and, quite possibly, an eradicated one.

 

 

 

 

 


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Anonymous's picture
Anonymous
Replies 12
Last reply 4/3/2016 - 10:45pm
Replies by: Maria C, Anonymous, Scooby123, Janner

Hello! 

 

My mother was diganosed last year with vaginal melanoma.  Had surgery, tried that chemo combo cisplatin/temodar, but it really messed her bloodwork up, so she had to stop.  We just found out it has returned in several places.  We do know that she is NRAS positive, but Braf negative.  Trying to do a brief eduation for myself before we go to her appointment tomorrow.  I want to be fully prepared!

My question is this, becasue she is BRAF negative, would she be able to take Keytruda? Or is that not an option because BRAF negative? 

Any information would be helpful!

Thank you!

 

 

 

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Bobman's picture
Replies 10
Last reply 4/3/2016 - 12:44pm
Replies by: desertsun, Bobman, Anonymous, DZnDef, Janner, JuTMSY4

I will have the sutures  removed this Monday  from primaries  8,and 9. Primary  number  7 was just a few weeks  earlier .  In the meantime,  I have several  new lesions  popping  up all over. Forehead , neck,back,legs,and abdomen . They all look as funky as can be...a few dark as coal. Even among my sea of a typicals the new ones stand out. I saw my primary  care nurse practitioner  on Monday ,who helps with biopsies  between  visits to the dermatologist .  I told her I  am now experiencing  fatigue  like I have never known .  She asked me what the oncologist  wanted to do,and I explained  that he said nothing  he could  offer until I reached  a different  stage. He did send me for a pet/CT scan  a couple  of years  ago when I was on about my 4th,or 5th primary , combined  at that time, with put me on the floor pelvic bowl  pain. I lit up both scans in exactly  the same area  of my pain. Was scoped front and back,with nothing  found,and in general  have only experienced  that same pain a few times since. She suggested  another  pet scan now.

I am totally  confused  as what to do here. Technically  I  am still stage 1,but something  is definitely  going on. I've  only  been  on this road for 5 ,or 6 years  now but the changes  on my body  are speeding  up. If I had Mets to anywhere  would  I  still  be throwing  out all these InSitu , and stage 1 lesions ?  My surgeon  actually  said to me after primary  number  7 that I was a ticking  time bomb. I actually  appreciated  the comment , as it seemed  real,and mirrored my thinking . Then a week  later we were  at it again , and most  likely  it's going  to be repeated  in a couple  of  weeks . .....wtf ?

Appreciate  any thoughts  on this you all may have.

Aloha , 

Bob

We are one.

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WithinMySkin's picture
Replies 14
Last reply 4/2/2016 - 7:58pm

Hello friends and fellow warriors! My onc just threw me a serious curveball, and I would love your input. 

Quick history: April 2015 diagnosed stage IIIB, 2.1mm primary on thigh, >2 mitosis, BRAF+, with ulceration.  SLNB positive 1/2 nodes. Decided to watch and wait. 

November 2015 found In-transit on leg. Stage IIIC. CLND showed 6/30 nodes positive, 2 "grossly positive" with extracapsular extension. Started Sylatron. 

March scan showed 2 possible in-transits on same leg, everything else clear. Watching the in-transits. 

So I've been watching the in-transits, and one has been growing. Just met with the Onc, thinking of dropping the Sylatron and going to Ipi at 10 mg. (Because clearly, the Sylatron isn't doing its job). But he really shocked me when he said we COULD leave the in-transits and go to the Ipi/Anti-PD-1 combo. I get the jist that he is being extremely liberal with the phrase "unresected" stage III, and giving me a balls-to-the-wall option. I clearly hadn't though of this as a treatment option, because I've only had leg and nearby node involvement so far, so this is a whole new world for me. 

SO, what to do?!? My options: 1- have the in-transits resected and go back to watch and wait. 2- go to Ipi 10 mg and have the in-transit resected 3- leave the in-transits, and go guns a blazing with the Ipi/Anti-PD-1 combo. Clearly, the side effect profile for the combo will be greater than the Ipi alone, and greater still than the watch and wait. I currently don't have any distant mets, and I'm still classified as IIIC, but clearly my Mel is knocking, and 6/30 nodes aren't good odds. I think the Onc is leaning towards being aggressive due to the pathology of my case. I'd love to get ahead of the beast, but is it OK to jump to the combo?!

This is a big fork in the road, and a big decision. Any and all input you all have, I'd greatly appreciate! Hope you are all kicking melanoma tail! 

Lauren

WithinMySkin

www.Withinmyskin.com

 

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Scooby123's picture
Replies 14
Last reply 4/2/2016 - 5:19pm

Today I went to see a specialist in Gamma Knife. I was very nervous and not been sleeping very well since told I had a spot on brain. 

I saw 3 different nurses who explained every thing in detail which made me feel more confident in the treatment.

The specialist showed me my scan of my brain and where it was he said its small but I could see it clearly. It is located at the back of my brain on the right side. He did say that this treatment is good for tumours which are small. He also said when I have my MRI on Monday before treatment if there is any more they would also treat but praying there is not.

There has been no mention on me starting keydruda  after this , I did ask my nurse she said that due to me stable eles where and just this on brain this treatment is best to treat it and save keydruda for when I need it. I am Brad negative.

Do you guys think this is what you would do , the only thing worries me if more pop up on brain but I will have scans every 3 months but like some a lot can happen in 3 months as we all know.

will have to pray it does not develop any more on brain

hope you all ok and had a lovely Easter break.

scooby123❤️

 

 

 

 

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Angsta39's picture
Replies 1
Last reply 3/30/2016 - 1:06pm
Replies by: Bubbles

I had Stage IIIB Amelanotic nodular melanoma and was NED for 7 months. I went into see Derm in December and pointed ot two spots on my leg that concerened me. After biopsy, it was found that I have in-transit melanoma which moved me to Stage IIIC. By January I had 7 lesions and by February and my first set of T-VEC injections, I had over 30 lesions. 

Started T-VEC injections in February with only 7 injections. After waiting 3 weeks for next injections, doctor decided that I needed 20 injections because of all of the melanoma lesions that have popped up on my thigh. The 20 injections didn't hurt really because I have no feeling in my thigh from prior surgery, but the side effects afterwards were not fun. Within three hours of the injections, I was shaking uncontrolably, running a high fever and vomiting. I was not able to hold down any solid food for three days. I was worn out and sore for the rest of that week and finally got back to normal a week later. This time, I had 20 injections and I didn't even make it home before the shakes started. It was quite scary driving myself home like that, but I made it safely. Again, high fever, vomiting, and shakes but this only lasted over night and today I'm a bit wornn out, but not as bas as I was with the first 20 injections. 

The next time I go in, the doctor wants to do 30 injections. I am not looking forward to that at all, but at this point, I don't know what else to do. I have a new melanoma lesion pop up on my leg daily, it seems. Some have even come together to form one big one. I am just afraid with the waiting for them to be big enough to inject and watching them get so big (even bigger than originl melanoma) that it will end up spreading and I will become stage IV. 

I just feel like I am not doing enough to become NED from this disease. Any advice would be greatly appreciated. 

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