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.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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Sbdeutsch's picture
Replies 10
Last reply 1/1/2017 - 11:08pm

Wanted to update everyone on Juan.  After getting to the hopsital his condistioned worsened after having a Pulmonary embolism.  The regular doctors were ready to give up but Dr Luke wanted to try Chemo in patient which is highly unsually to give to a patient who was in Juan's condition and blood thinners.  At this pont he was in ICU and needing 10 liters of oxygen.  On Sunday 12/18 they started giving him blood thinners at a very low level and Chemo.  Fast forward to 12/29 and after many shocked doctors (not Dr. Luke) Juan left the hospital needing only a little oxygen at night.

So the plan now is get stronger, one more chemo treatment and get back on some cocktail of immune therapy drugs.  I am hoping he will be strong enough to also look into TIL treatment.  I am having a hard time understanding the diffrent type of treatments and who are the go to Doctors in that area (we usually see Luke and Weber who both don't do TIL) So any help with reserach or contact information would be appreciated.

My love is fighting so hard and I am so proud of him...

Stacey

 

 

 

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Anonymous's picture
Anonymous
Replies 12
Last reply 12/31/2016 - 6:15pm

Today has not been dull. Two hours after my 4 AM infusion I had a reaction. It was intense shivering (rigors) similar to the ones from two days before but this time it was accompanied by what felt like an inability to breathe (Strider).

 
The trial lead investigator told me one more treatment could kill me. But I had only received 3 bags of IL-2, on top of  low TIL yield. 
 
It was an agonizing decision to make, since I will die soon without treatment and this looked like my best shot. 
 
I asked the lead investigator what she would do if she were here in the bed not me and she said that she would go for another infusion.
 
I finally said go for it, so long as all the countermeasures were in the room first: 50ml Demerol syringes, anaphylactic stuff and steroids.
 
So then the lead investigator spoke to my regular oncologist. He reminded her that I already have had many immunotherapy treatments which could be causing all kinds of strange reactions. Also I respond very oddly sometimes to immunotherapy such as being one of the first patients to develop type one diabetes in response to ipi.
 
They said there have been instances at MDA of people completing the first two portions of the treatment but for whatever reason not able to take any of the IL-2, and still have some form of response.
 
They have to wait for six weeks for the next set of scans because the TIL works slowly and they cannot get any meaningful data until at least six weeks.
 
Frankly I don't know if I'm going to last six weeks. So now I have to spend time and come up with my best Plan B. So I am going to go back to Celeste's post with the set of links, and Ed's link about with the De. Hamid interview. I need to really get wheels in motion now, not 6 weeks from now.
 
I will be honest. That breathing thing was the worst experience of my life. And it is a response nobody has seen before. I honestly thought I might die.
 
But, as you can see that was not the case.
 
But now I have to recalibrate my personal 1 - 10 pain scale.
 
When they told me no more bags of IL-2, it was both the best news and the worst news.
 
Even though things are a bit more dire, I'm not giving up. Life is just too damn awesome to let go easily (although that was not my thinking during the Strider/Rigors combo).
 
I feel compelled to say this last thing. I am not religious at all. But I believe deeply in God. When asked if I wanted another bag of potentially terminal IL-2 I prayed to God for an answer. Shorty after that was when I received the news that there would be no more IL-2. The need to make a decision was removed, that was his answer.
 
Sorry for the typos--it's my accursed autocorrect.

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Anonymous's picture
Anonymous
Replies 5
Last reply 12/30/2016 - 1:00pm
Replies by: cancersnewnormal, Ed Williams, Anonymous, Janner

In sept i got sick really bad with a cold. In early oct i was getting headaches and lightheadiness. I went to see a doctor who diagnosed me with viral sinusitis and said it would get better.

I had a pet/ct scan full body in nov that was all clear.

As of a few days ago i was having same symptoms. Went to dr and he gave me a mri of brain cause of cancer history. My brain came back clear (no tumors) and the mri stated thickening of mucous in sinus's. Ive had a ct scan in july and oct and both said sinus disease seen.

Could this be mucosal melanoma? Or is it just a sinus infection. Im going to see a ent soon. Sorry i have really bad anxiety ever since i was diagnosed. Ive had this since oct 5th 16.

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Anonymous's picture
Anonymous
Replies 3
Last reply 12/30/2016 - 3:35pm
Replies by: triciad, Bradley75, MaPerny

Does anyone have experience with metastasis to spine vertebrae? What is treatment?

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ToddC's picture
Replies 4
Last reply 12/30/2016 - 4:52pm
Replies by: ToddC, jpg, Bubbles, Ed Williams

I know my story is totally anecdotal and I don't intend to try to convince people not to pursue medical options with this disease, certainly anyone reading this who has active Mel should seek the advice of qualified oncologists but I like to check in from time to time here since I got some fantastic ideas from this forum many years ago from a gentleman named James Sennel whom I thought was a total quack when I first read what he wrote here. Turns out he was on the right track however and I just want to continue the discussion for current readers.  

I never took Chemo (Inf) or Yervoy but my stage 4 melanoma vanished in 2011 and never came back. I was waiting for yervoy to get FDA approved back in 2011 but I never needed to take it because there was no longer any detectable tumors after my last sterotactic procedure in Nov 2011. I had a total of seven surgeries or radiation procedures to remove or kill melanoma tumors in my lymph system over the course of about 3 years from 2008-2011 and thought I would be dead from this cancer.  I was very lucky this never invaded any significant internal organs or my brain, it did grow in my gallbladder (removed) and about 1/2 inch from my heart (near my Aorta - fried by gamma radiation beam)

I think it was the following changes I made in lifestyle that cause a remission:  I purchased a Vitamin D/ UVB lamp from a company called Sperti and used it 3 times a week for about 10 min time, perhaps 30 minutes total each week. I ceased bathing my skin with soap other than the parts that really needed it, this increased sebum on the skin surface which really helped raise my vitamin D levels. My VD level was always low even though I took pretty large doses of vitamin D in pill form, upto 6000iu per day but it was when I started using this lamp the levels really raised up to mid 50s and sometimes 60+ while before that was always around 20 or so.  This is not a tanning lamp which is mostly UVB and is meant for very short duration use, not enough to seriously damage your skin cell dna, UVB does not penetrate skin as deeply as does UVA.

In addition to using this sort of UVB lamp, I ceased using fluoride toothpaste and began really scrubbing any produce I ate to remove any pesticide or fumigant residue which is also very high in Fl. Anyone that gets cancer should be aware of the degrading effect that this stuff has on mitochondrial enzyme production which is how vitamin D is modified to become active in the kidneys and liver. Also I would point out nearly all our steroidal hormones are the result of enzymatic processes so if these enzymes are not effectively working due to fluoride interference you will become low in some very important endocrine hormones.

I also ceased eating pretty much all processed dairy products such as cheese (I loved cheese before), skim milk, basically anything with high levels of casein protein. Casien protein is a sticky molecue which I think gums up your lymphatic flow and can prevent your immune cells from mounting an effective attack on tumors. This is because casein protein is highly imflammatory to the immune system resulting in reduced effectiveness of your T and NK cells whcih will usually wipe out cancer growths. Casein I would also point ouit is used in medical research to actually induce inflammatory responses for cellular research so you need to curtail most processed dairy products as you want your low level inflammation gone. 

I know people that get this disease are also super worried about sun exposure and sunscreens, I went thru the same thing.  I have not worn sunscreen at all in 5 years and havn't taken a vitanin D supplement in all this time yet my bloodwork shows I have super high vitamin D levels FWIW. Sunscreen is a very stupid product since it will generally prevent you from being able to produce any vitamin D since this is formed when UVB light wavelength catabolyses the cholesterol in your sebum and upper skin levels, that is this light frequency opens up the steroidal ring by removing a chemical bond in that hydrocarbon ring structure. That precursor is then reabsorbed into your skin since it is a lipid and makes its way to your liver for further modification by cellular enzymes. I used to grow all sorts of weird skin lesions and strange moles but that has ceased and my skin has actually improved a lot in 5 years. 

One other thing I feel is important is you must supplement your trace mineral intake including magnesium, zinc, iodine, boron, etc as all these substances are really important building blocks for all your hormones. Steroidal hormones are a controlling agent for genetic expression affectinve many bodily functions and feedback mechanisms. Get plenty of raw green leafy vegetables in your diet as well, they are high in Mg, vitamin A and C along with vitamin K, all of these are necessary in your fight.

The warnings about sunburn and UVB rays may have some merit but if you over-react by wearing sunscreen all the time and thus never receive enough mid-day sunlight which is highest in UVb contect you are asking for further cancer growth IMO. Apparently some people (like me) cannot absorb the pill form of vitamin D for some reason. Anyway, please just consider my message which I know seems implausible but yet here I am still alive and doing pretty well. My bloodwork today shows an LD reading below 20 which is awesome, it was well over 70 when I had active tumors. My wbc's are upto 25% levels from a low of less than 10%, my vitaminD is over 50 from around 20 previously, my blood sugar is much lower now, usually high 80's (early morn) and was always 110-115 range when I had active disease. (BTW - keep all of your bloodwork in a binder for later reference - the above markers are great for following progress in your fight)

IMO and based on my own experience with this thing, Mel is actually a reversible condition and not a death sentence. BTW-none of what I recommend will interfere with chemo or gene therapy medicines, higher vitamin D level will absolutely help all of these efforts for you to become health again. Good luck 

 

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Anonymous's picture
Replies 1
Last reply 12/31/2016 - 11:39pm
Replies by: debwray

What were your experiences? I don't see a lot of research on this. 

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annouk's picture
Replies 7
Last reply 1/3/2017 - 3:42pm
Replies by: annouk, Anonymous, Janner

Hi,

i will try to keep it short...

back in April I noticed a mole at the back of my upper arm - it was small, symmetrical and red/brown coloured  but scabby and itchy. Since then I had 3 doctors looking at it (GP,derm and oncologist) all of them assured me it was fine. However it itched a tiny bit every now and then and I finally went to have it removed privately (we have national health service in the UK)

after 3 weeks of waiting for the biopsy results I got a call from my doctor saying that the path report said it was a Spitz naevus, fully excised.  She said they have sent it for a second opinion and scheduled me for a WLE (5mm). I'm currently waiting to hear back from her as this was just before Christmas.

After researching it online I've found that Spitz naevus and melanoma are very similar and often mistaken for one another. I also have a palpable lymph node on my neck and groin so I'm really worried that the path misdiagnosed me. Has anyone else here had a Spitz naevus? Has anyone been told that they have Spitz naevus but it turned out it was melanoma? Do you think that if the second opinion comes saying it is melanoma (I really hope this doesn't happen :( ) is it likely to be early stage? Is it possible that path says Spitz naevus but then it turns out to be metastatic melanoma? I'm really anxious and can't stop worrying about it ;(  I also find it hard to trust doctors since 3 assured me it was nothing!

any advice would be very appreciated.

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Scooby123's picture
Replies 4
Last reply 1/16/2017 - 12:37am
Replies by: SOLE, debwray, Scooby123, MaPerny

Can anyone tell me if you can have your cells saved for Till treatment  if you ever need to go down that route. This is if you was having it done private. 

Sorry I have read about how the treatment works but also have read readings when you are so ill and cannot wait for cells to grow . Could you have them saved if you ever needed them. I know it might not work in the first place but if it did would this be possible if paying for it. Plus I have no idea how much it would be but it was on my mind. You can only get it I think but  could be wrong in Uk private. 

Sorry if you think this is a silly question but was woundering, I am braf negative so finding as much I can  on treatments for braf negative.

scooby

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Hriggenbach's picture
Replies 3
Last reply 12/29/2016 - 9:17pm

I had snb and wle my dr just called saying one lymph node tested positive but the melanoma is encapsulated she scheduled my for Ct and MRI as well as surgery to remove the rest of the lymph nodes. Is it good it's in only one??

My original pathology report ...Ohio state university hasn't posted latest report yet 

Ulcerated invasive spitzoid malignant melanoma 

Breslow Depp at least 2.3 MM Clark's level IV
ulceration present
Focal angiolymphatic invasion present
No neurotrophic invasion present 
No microsatellitosis present 
There is a brisk host inflammatory response 
Note: The breslow depth maybe deeper than reported as the lesion is seen extending to the base of the biopsy specimen. The AJCC staging for this lesion is PT3B Pnx, stage IIB. The mart-1 strain efficiency highlights these meanocytes with the PHH3 highlighting Mitotic figures

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Anonymous's picture
Anonymous
Replies 4
Last reply 1/1/2017 - 4:14pm

Hi Julie,

I was reading old posts and saw your last post in September and was wondering how you are doing? I hope that you are doing well and enjoying your Hanukkah. Please post to let us know your OK!

Shalom

 

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casagrayson's picture
Replies 2
Last reply 12/30/2016 - 1:00am
Replies by: casagrayson, geriakt

Has anyone had an update from Juan or Stacey?

Strength and Courage,

Susan

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Casitas1's picture
Replies 11
Last reply 12/30/2016 - 8:35am

Hey all, six month scans after becoming NED in July were all clear today! Been off treatment since Oct. Feeling great except for joint inflammation which i see a rheumatologist for on Fri. Happy New Year to all! And to all those battling the beast I think of you often and wish you well.

Paul

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Aloha14's picture
Replies 0

I had the groin ultrasound today to check on the lumps~I don't just have one seroma I have three! All this for removal of two lymph nodes. I see the surgeon in the morning to find out if the largest one can be drained. The smaller ones I could deal with. 

Plus, had my Pet Scan today and made it through without the Valium. The wrost part seemed like getting the saline and glucose stuff into my veins~I could smell and taste it. 

Hopefully, the stitches in my lower leg come out tomorrow. 

Thanks to all for the support

 

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Anonymous's picture
Replies 8
Last reply 12/30/2016 - 4:41pm
Replies by: Anonymous, ida_aud, Janner

Hello Everyone,

I have two questions in regards to this new journey.

First, I will talk about my diagnoses, I am 22 and was recently diagnosed with stage 1a melanoma with 

0.23mm in thickness

ulceration: absent

Regression: present

deep margin: negative

peripheral margins: positive (have already had the WLE procedure and got the all clear that got everything)

Mitotic Rate: 0

Microsatellitosis: Absent

Lymph-Vascular invasion: absent

Lymph nodes: N/A

The mole that was cut out was on my upper trunk above my scapula near my shoulder, I am almost certain this was caused by a nasty blistering sunburn I had as a child. I have known about the dangers of melanoma way before this diagnoses, and before this mole was biopsied, I have had 15-17 other moles biopsied before this, all have come back mildly atypical at the worse. With this being said, my question in regards to my recent diagnoses is how low of a risk is this mole? I know that my risk falls somewhere as the ten-year survival rate of stage 1a is 95% but just wanted to hear some others that can add to these findings. I am pretty scared but am ready to move past this and am glad that I found it early. Is there any advice anyone can give for this diagnoses and how to deal with it?

 

Second question:

I am also worried about now having another melanoma on me right now.. I wanted to see if anyone could give any advice on how common it is, if it is at all to have two primary melanomas on your body at the same time. I have read that my risk for a new primary is around 4-8% but wanted to see if anyone could point me to studies or from own experience on if they have had two primaries at once or if they occurred later in life. Thank you for reading this, and please let me know your thoughts. 

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MelissaMW's picture
Replies 12
Last reply 1/1/2017 - 11:19am
Replies by: MelissaMW, Janner, Anonymous

Hello, my name is Melissa. I'm a mom of a 9 month old daughter and I was just diagnosed with a 1 a Melanoma. Right now I'm very confused and worried. I had a mole checked out on my forearm a week ago and wasn't expecting these results at all. I do not now how to cope with this right now since I just lost my mother to a stage III cancer with peritoneal carcinosis. My Dermatologist keeps telling me to not worry since I caught it early. He also tells me that I do not have to go see an oncologist. He did refer me to an plastic surgeon to get more skin cut out. I was wondering if you could give me some more info? Should I go see an oncologist? Really how bad is this diagnosis? Also, I'm very fair and blonde so I have lots of moles an freckles all over the place. How do I know which ones are dangerous? How am I even able to check all of them and notice changes?

 

This is what my report reads

 

-early malignant melanoma, superficial spreading type

- possibly arising at the site of a precursor nevus

-breslow depth 0.24mm 

-clarks level II

-no ulceration present 

-dermal mitocic index zero per square millimeter

-no microsstellitosis present 

-no lymph-vascular invasion identified

-in situ melanoma closely approximately and may involve a lateral edge of the biopsy 

 

 

Really looking forward to any advise and help. Thanks. 

 

 

 

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