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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arthurjedi007's picture
Replies 8
Last reply 8/27/2014 - 8:32pm

Just an update if anyone is interested.

I believe I'm really lucky with this brain stuff so far. Basically the one skull tumor that is growing is pressing on the outer layer of the brain and displacing the brain but nothing is in the brain. The other 2 tumors are actually a little smaller than they were in February with one of them still pressing on the outer layer of the brain but it doesn't displace it. I assume that's the PD1 working some but dunno. So why didn't they radiate last February when the mri said I had a tumor pressing on my brain? I dunno. That was my local onc doc then and now I have my mayo doc. That was also the time I was almost paralyzed so I didn't really look at the mri i guess.

Anyway my local radiation doc is actually more concerned with the spine. Apparently there is some more spinal cord stuff happening like last February although I'm not really experiencing much symptoms yet. My mayo doc did confirm after reading the mri reports that the spine needs radiated too. So the plan is PD1 on Sept 3. Radiate t12 and l2 in spine at 30 gray in 5 fractions Sept 8 to 17th. That is the same plan that shrank the t10 in March and now the PD1 is continuing to shrink it.

For the skull though he basically said he hasn't decided the best way of doing it. He hasn't got it in his head yet he said. He also said he will be talking to his colleague about it. He also didn't want me on the table that long and not being able to stay still for 30 plus minutes. So he's going to decide how to do it and do it after the spine. So the plan is PD1 on Sept 24. Radiate skull in some fashion starting around Sept 26.

Like Joe said about the dosage needing to be higher per zap for melanoma he did say it would be higher than 3000 (ie: 3 gray I think) probably something like 4100. I guess that is a little over 4 gray. But he was not sure about a minimum of 6 gray to the skull. But he hasn't decided anything with the skull yet. He was talking more about focusing the beams directly and things instead of the standard area blast. So I think he's on the right track. I also think if he can shrink it even a litle maybe the PD1 will take over.

I hope I get the radiation/pd1 combo miracle that some people get. We shall see.

 

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GAngel's picture
Replies 6
Last reply 8/27/2014 - 4:50pm
Replies by: GAngel, rick1981, jualonso, Mat

I wanted to share the good news and update everyone on Rudy's health status. His last scan on July 25th showed no evidence of disease. The date of that scan was the 1 year mark of him starting the combo and 8 months NED status. His oncologist said that Rudy is one of three of his patients that are still responding to this therapy with Rudy being the patient with the most months of NED status! It's important to note that for the past 4 months Rudy has been on an intermittent dosing schedule of 2 weeks on combo 1 week off. He took a 1 month break from the combo back in April which was the month before he started intermittent dosing.  Taking a month off of the medication was Rudy's idea and he did not tell his oncologist until after the fact.  His doctor scolded him and said that Rudy had dodged a bullet and that what he did was "non-compliant" but he was smiling all the while and quite amazed that his scan was clear despite his rebellion.  

I'm sure that many are thinking that Rudy is playing russian roulette but it's not a decision that he made lightly. For him, it's a quality of life issue along with a strong belief in the effectiveness of the alternative meds he is taking.  I have shared before that Rudy has been taking hemp oil since May of 2013 (he was diagnosed stage 4 in February 2013).  We believe that the oil is playing a big role in his success so far in battling this disease.  The hemp oil  (he makes it himself) is not legal in this country, yet, it has proven healing abilities and is safer than any chemotherapy drug offered by the pharmaceutical companies. There are no side effects other than slight drowsiness. We know personally two melanoma patients who are both currently NED status and the only treatment they have ever done is hemp oil.   I am not suggesting that this is the answer for everyone...I'm just letting you all know that there are other things out there. Not all are "snake oils" just because they have not been FDA approved. Do the research...dig deep, it's your life...do all you can to save it.     

We also strongly believe in having a positive mental attitude and eating a healthy diet. Last but of most importance to us is holding on to our faith, knowing that it's all in Our Heavenly Father's hands.

God bless you all!

Gina  

 

 

"Don't worry about anything; instead, pray about everything. Tell God what you need, and thank Him for all He has done."- Philippians 4:6

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Charlie S's picture
Replies 15
Last reply 8/27/2014 - 1:53pm

Guess I didn't get the memo about ALL the posts being moved to the archive.  Ouch.  Here's hoping everybody catches on pretty quick.

 

Charlie S

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Anonymous's picture
Replies 4
Last reply 8/27/2014 - 1:37pm
Replies by: ChemistLN, Janner, Anonymous

I was just denied a 20 year term life insurance policy because of an early stage 1 melanoma from a couple years ago.  If the survival rates are really as positive as what I thought, why would an underwriter decline coverage if the expected survival is 90%+ ?

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BrianP's picture
Replies 10
Last reply 8/27/2014 - 1:30pm

This is a pretty interesting 8 minute panel discussion on checkpoint inhibitor Combination Strategies.

Joe, I think you'll find the discussion interesting on TIL therapy and some discoveries they've made recently on why TIL sometimes works initially but then there are recurrences.

G-Samsa, I looked through the 2014 ASCO abstracts and couldn't find anything relating to the side effects to the lungs you recently mentioned but there is a little discussion to PD-1 side effects in this video that may be what you were referring to. They mention that anti-PD-1 not only blocks PD-L1 but also PD-L2. Apparently PD-L2 is needed to promote homeostasis in organs and prevent pneumonitis in the lungs which can be very dangerous.  This is why they think that anti-PD-L1 is so far having less side effects than anti-PD-1.

The link is to part 4 of a 5 part panel discussion. I haven't watched all the discussions yet but found this one pretty informative.

http://www.onclive.com/peer-exchange/immunotherapy/Checkpoint-Inhibitor-Combination-Strategies

 

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Anonymous's picture
Anonymous
Replies 6
Last reply 8/27/2014 - 11:27am
Replies by: Anonymous, arthurjedi007, G-Samsa, RJoeyB

This is a qestion for anyone that can help and I will provide all of the information that I have. Here goes. I work with a lady that was diagnosed with stage 4 OM about 6 years ago. This is where I don't have all the info as to what happened at this point but fast forward about 5 years of checkup and clean scans to the last year where she has had a mestastasis to the liver, She has taken IPI that she did not tolerate very well ( made her very sick with colitis) She has also had a few ablations to the liver that did well but the tumors would come back. Last week her doctor sent her home with a bottle of pain pills and told her that was all he could do for her. She now has active tumors in both lobes of the liver. She sees doctors at The West Clinic in Memphis,TN. I'm not sure if the doctor is a melanoma specialist or not but my real question is this. Does anyone know of any stage 4 melanoma studies going on now that she could possibly get into. This could be her last hope!

Thanks for any input & again what i have stated her is really all the info that i have about her case.

 

 

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brooke's picture
Replies 13
Last reply 8/27/2014 - 8:48am

Hello!

I've been reading about various 'cancer fighting'  supplements and wondering if anyone has opinions or experiences with them.

I've heard especially good things about curcumin, wondering what common dosing is.

My  husband has also been juicing every day and I've bought him green tea extract and vitamin D. 

(We are not doing this in lieu of standard treatment, just additionally!)

Thanks,

Brooke

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The PD1 is doing fantastic but there are a few problematic tumors thus they want to do radiation.

A tumor in my skull is right at my brain. Tomorrow's MRI will show details. But today my radiation doc was thinking of doing external beams to that section of the skull where the tumor is of 39 gray in 13 fractions. After the MRI he will know if he can instead angle the beams to just that tumor or if we are dealing with further problems. The pet scan did seem to indicate several tiny tumors in various spots of my skull as well as this 2cm one.

There are also the t12 and l2 in my spine. He's thinking of doing those like last time for the t10 of 30 gray each in 5 fractions. Although they are a problem I'm not having anywhere near the symptoms like I did when the t10 almost paralyzed me last winter. Although the pet/ct scan seems to indicate from the light on the skelatal view the t12 is about 2 thirds the size the t10 used to be. It's a short horizontal bar instead of a dot.

So my first concern is over 90 gray seems like a whole lot of radiation but I dunno maybe that is common. It's certainly more than 3 times what I've had in the past.

My second concern is the plan to radiate the tumor in my skull. I was thinking something more like gamma knife but maybe that is only for inside the brain not the skull at the brain I dunno. I was also thinking intensity-modulated radiotherapy (IMRT) but again maybe that is only for inside the brain. I know mayo where I get my pd1 is still working on their proton therapy which again may not be for this. I know when my doc kept me from being paralyzed he did stereostatic radiation (SRS) with a CT scanner to more directly pinpoint the beams.

So I dunno. I'm kind of over my head again. Any advice would be appreciated.

Artie

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arthurjedi007's picture
Replies 19
Last reply 8/26/2014 - 2:04pm

I got my first scan with this Merck PD1. It was a few hours before my 5th dose so week 12. I would like my fellow warriors who have had every medicine fail so we finally get into the EAP to have faith. It does work.

I think my mayo doc was actually a little disappointed I didn't have a complete response but I think it is fantastic to have a mixed response. About a dozen or so tumors are shrinking including the t10 that almost paralyzed me last winter. About 6 or so stayed the same. 5 grew. However this was compared with a scan almost 1 month before I started PD1. Of the 5 that grew the huge 9 x 10 cm in my left shoulder they think is mostly dead tissue now because the huge center was dark surrounded by the red/orange mel. Also it visibly measures 9 x 9 now. The one on my skull that the visible part shrank a lot is internally at my brain so my mayo doc wants my local doc to radiate it so trying to get that started. I maybe should have had it done at mayo but didn't even think of it until we were on our way home. But my local radiation doc is really good. There are also the t12 and l2 in my spine that grew a lot so also waiting to hear if they want them radiated too. The one on my collar grew some since that old scan but the visible seems to have stayed the same. If you notice I refer to most of my mel by bone is because pretty much everything has started in a bone then grew to soft tissue involvment. So yes this stuff definitely works on bone mel tumors too.

So that's it. Finally some pretty darned good medicine if you ask me.

I dunno but I assume it is possible the PD1 might start working on the non responsive tumors? I know it can continue working on the responding tumors. I just don't know about the non responsive ones that grew or stayed the same.

Anyway be strong. Keep fighting. Like I've said many times that someone said to me on here no matter how many medicines fail you have to stay strong and find the one that works for you.

Artie

 

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Anonymous's picture
Replies 9
Last reply 8/26/2014 - 8:52am
Replies by: ChemistLN, vlmd1986, Janner

Hi everyone!  Thank you for taking the time to read my post.  My dad (65 yrs old) is stage 3C, currently on interferon treatments.  Last week, I (I'm 28) had two "moles" removed via shave biopsy.  The physician had said it would be about a week for results.  She boasted about the dermatopathologists quick work and skill.  She called earlier this week to tell me the dermatopathologist wanted to seek a second opinion, causing a delay in about two days for my results.  It slightly worried me but with my family history and past tanning bed use, I was just hoping they were being cautious.  Last night, she called again to ask more questions about my dad - specifically asking what treatment he was on and if his melanoma arose from an existing mole or a new spot. Unfortunatly, we don't really know.  He noticed a swollen lymph node before they found the lesion.  I asked the doctor what she was trying to get at, and she said "honestly, I don't know.  These were just questions that were passed along to me."

I'm thinking the purpose in asking about the treatment for my dad was to see if it was one of the treatments specific to genetic mutations. I sent my dad's pathology reports to them, hoping that might clear up some of their questions. (One of the good things about his treatment at the VA... online medical records!)

I'm hoping someone can help me understand the process of the dermatopathologist.  Would a dysplastic nevi cell stain look similar to a melanoma cell stain?  Do the questions from the dermatopathologist seem familiar to anyone?  I understand that this would be largely speculative but I'm hoping just to gain a little insight on the process.

Thank you!

LNM

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mike potthoff's picture
Replies 7
Last reply 8/26/2014 - 7:57am

I was diagnosed today with subungual melanoma.  Started in my finger nail and now recommending that they remove 1/4  of my thumb.  Does anyone know of a cancer center in the US that specializes in this type of melanoma?  Scary for me...four young sons and have always been healthy

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DZnDef's picture
Replies 1
Last reply 8/26/2014 - 3:44am
Replies by: rick1981

Hi all,

For those of you interested in learning more about Integrative and Alternative approaches to cancer, there is a free online summit starting on September 2nd.  You would have to give them your email address (yes, you will be added to their mailing list) then you can attend the summit for free.  They make money by having folks sign up for a monthly membership where you can watch/listen to the presentations anytime rather than just the free period.  But you aren't required to be a member to listen during the free period.

TheCuretoCancerSummit.com

I don't seem to be able to add live links on my ipad for some reason, but you can cut and paste the link above if you're interested in the material.

Be well,

Maggie

 

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robbier's picture
Replies 3
Last reply 8/25/2014 - 9:25pm

After 4 surgery related biopsy. Being sent to MD Anderson back in May 2014. Here is my update: July 23; 2014 pet scan showed 2 areas of concern. On in the pelvic area, the other the mid right shaft in the right leg. Was sent for a bone scan Aug 12th. I chose to go to hospital to get the results before going back to see cancer Dr Aug 12th . I wanted to know the results, because we the doctor and myself where to talk treatment. Results from bone scan no abnormalties seen in pelvic area, no abnormalties seen in mid right shaft. No evidence of metastasized disease seen. I thank God for this! Doctors appointment I ask my Doctor what's next? Treatment? His reply was you can't treat something that is not there. Again I praise my God.! At this time I will be followed next test and appointment not until October or November. Very happy lady and I still give my God the credit for helping me through. Robbie

I believe in God and his son Jesus, I know that this is not everyones belief. I know that God has me in his hand, I might not like what I am going through but God is the one that gives me strength fromd day to day.

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gossteach's picture
Replies 20
Last reply 8/24/2014 - 9:20pm

Hi- I am new to this forum, but have learned so much from all of the info that has been posted. I am in my fifth month of interferon treatment for stage 3B. I feel like the symptoms are getting progressively worse as I get further along....I have joint pain, headaches, loss of appetite,fatigue, and I'm staring to notice myself being very irritable, which isn't my nature. I guess I thought I would get used to the symptoms and feel "normal"by now, but that's not the case. Some of you have stopped interferon due to side effects....how did you know when it was time to stop? Is it typical for side effects to get worse in the later months of treatment?

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Nal64's picture
Replies 9
Last reply 8/23/2014 - 11:53pm

My 40 yr old husband found a lump in his shoulder in January. We believed it to be a muscle knot but when it didn't go away after a few months we were sent to a surgeon.  The general surgeon didn't like that the lump was underneath the muscle and took a needle biopsy that was diagnosed as melanoma. The general surgeon disagreed and sent us to a sarcoma specialist at the University of Chicago.

Our sarcoma specialist performed an incision biopsy to make sure radiation was appropriate for the "sarcoma". We also had a PET scan done that showed no other evidence of disease. The sample came back from the pathologist again as melanoma (but now from a more reputable hospital).

Our sarcoma specialist conferred with a team that included a radiation specialist and melanoma specialist and decided excision without prior radiation was the best course of action. He removed a 3cm x4cm tumor with narrow but clean margins on July 1, 2014 on the side of the neck and top of the shoulder. It was located beneath the trapezius muscle. No lymph nodes were checked because this was considered "metastatic" with an unknown primary.

We then sought the care of a highly regarded melanoma specialist within our advocate hospitals medical network. He says he believes that the PET scan is correct, that this is a "primary melanoma of soft parts which is extreamly rare and cannot be staged because melanoma is staged from the top of the skin down".  This tumor appeared beneith the muscle. We can find no other information on this diagnosis online, as it all leads back to clear cell sarcoma. 

I should also make it clear, this tumor has been tested for every genetic marker there is. It contains NO genetic mutations and a FISH test was performed that completely ruled out clear cell sarcoma. 

The melanoma specialist wants to take a "watch and wait " approach. He fears radiation would do more harm then good in the long run. He said if Yervoy were available to us that he would give it, but that the FDA hasn't approved it for Resected melanoma. 

Yesterday my husband had a follow up with the surgeon who performed the resection. Because I couldn't attend the appointment, I emailed a list of nagging questions I still had. The surgeon was then able to talk to the melanoma specialist (gajewski)  on staff at UofC before my husbands visit. The surgeon said there is no such thing as "primary melanoma of the soft parts" . They believe the PET scan missed something microscopic and want us to see Dr. gajewski who will most likely radiate and get us into a clinical trial where we will either get high or low dose yervoy or IL2.

The melanoma specialist we have been seeing with a watch and wait approach told us he would contact our surgeon twice. He has not. We are in the process of emailing him and getting answers as to why this wasn't done.  

The question becomes: do we get our second opinion at the University of Chicago (where we have pretty much been told by the surgeon what treatment will be) , or do we seek out a "third" -but second to our insurance company- opinion that proves to be a tie-breaker? Is it too late for radiation? Do we fight to get seen at MD Anderson or Sloan-Kettering? I would love another PET scan too, but will not be allowed one for one year following the resection per our insurance company.

Any info you have would be greatly appreciated. We are so confused at this point and don't know who to believe. I have all path reports and any other info needed if it would help someone lead us in the right direction.

Thank you in advance

-N

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