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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Anonymous's picture
Anonymous
Replies 1
Last reply 7/31/2016 - 9:05pm
Replies by: landlover

I am stage IIIa.  I was diagnosed in January 2016 with a 1.5mm melamona on my left ear, no ulceration, 4/sq mm mitotic rate.  I had surgery March 22, 2016 to excise the melamona and complete a SLNB.  2 of the 7 nodes were positive for micrometastatsis melanoma.   I then had a paratidectomy and CNLD on the left side of my neck.  All 54 lymph nodes were negative.  Recent CT scans and Pet Scans were negative.  

Since the CNLD in May,  I still cannot raise my left arm above 90 degrees to the side.  I'm doing daily stretching and exercises but haven't seen a lot of progress.   In addition, my smiile is lobsided as my left lower lip is impaired.  However, this seems to be getting better.

Does anyone have advice for these symptoms? 

My surgeon said the nerves were spared during surgery but were stretched and this weakness in normal.  However he didn't give me a recovery time.

As for next steps, I'm waiting to hear whether I'm eligible for a clinical trial comparing Keytruda to High Dose Interferon.  If I don't do the trial my options are high dose intereferon or watch and wait.  Ipi is not approved in Canada for stage III.

Any thoughts on next steps?

 

Thanks,
​Stacie

 

 

 

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Shaneswife's picture
Replies 13
Last reply 8/1/2016 - 12:09pm

My husband is having a right groin CNLD and I was wondering if he will need crutches to get around after? I want to order them from the health care store but wanted to ask first if any of you needed them after.

Thanks in advance.

Janis

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Everymoment's picture
Replies 2
Last reply 7/31/2016 - 5:04am
Replies by: Anonymous, Janner

Hi,
I'm starting to realize the role genes play in our future. After having melanoma four times and having a breast cancer scare it got me thinking...by having melanoma are we predisposed to other specific cancers?
Thank you.

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Ace226's picture
Replies 10
Last reply 8/3/2016 - 1:09am
Replies by: kylez, Ace226, eric w, Mat, Casitas1

Hi Everyone,

 My dad has been doing well with metastatic melanoma for several years now but they told him that it now looks like leptomeningeal metastases which we are all very worried about CSF was negative and he doesn't have side effects of LM which is encouraging. 

 The doctors tried the Ipi/nivo combo (he had Ipi 2 yrs ago and was on opdivo for 8 wks this year)  but with in three weeks he started vomiting and having diarrhea now he has been in the hospital for one week and they are having trouble getting the diarrhea and vomiting under control. They say he has colitis. Has anyone had a side effect of vomiting from yervoy or this combo?  Tomorrow they may try Remicade if things don't get better today.

 I am very worried about him just wanted advice on if anyone had experience the similar side effects. And how they were treated  

 Also if anyone knows about better treatments for LM let me know. 

Thank you!!

 

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Anonymous's picture
Replies 4
Last reply 7/31/2016 - 10:03am
Replies by: Anonymous, Everymoment, Esmith123

Hi, my name is Emily. I'm 23 years old and when I was a lot younger, I made the foolish decision to start using tanning beds. I haven't for a few years, but since I stopped I've been keeping a close eye on my skin. I'm currently feeling helpless. I keep seeing spots on my body, all under 2 mm. My GP will not refer me to a dermatologist unless a spot is 6 mm. I have told him about my tanning history, and he told me that it's rare to get melanoma at my age even after my use of tanning beds. But when I read online it says otherwise and now I feel completely doomed that suffering from melanoma is my fate. Can a spot that's 2mm be deadly? I'm in Canada and to see a specialist you have to get a doctor referral to get in to see a dermatologist. Should I be concerned about anything under 2mm? If I have melanoma, I want to catch it early and do what everything says online is to get skin cancer screenings but my doctor won't help me. What should I do? 

thank you in advance.. You all sound like lovely people on this site... 

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Ddw's picture
Replies 7
Last reply 7/30/2016 - 1:11am
Replies by: Anonymous, MoiraM, Janner, Ddw

I just had a wide excision surgery on my heel. And they removed two groin lymph nodes and I'm waiting on pathology. So far the only information I had from shave biopsy it was a clarks level 3 with not clear margins. This is so different from breast cancer that I just finished chemo for in march. I have tripple positive breast cancer which means all hormone driven plus her 2 positive. I don't know if the two cancers cross in any way. When they put the radioactive tracer in me my groin lit up and also my neck which I don't understand. With my breast cancer I had a small tumor but it had already spread to my lymph node. I'm so confuse. If anyone could help I would appreciate it. I had the black spot on my foot for years my breast cancer oncologist told me we would worry about it later.

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Anonymous's picture
Replies 21
Last reply 8/2/2016 - 4:36pm

Hello,

My name is Maria and my mother was diagnosed with vulvar melanoma in Nov 2015. It all started with a woman's wellness check after she noticed a lump in her private part and was misdiagnosed. We live in Texas close to MD Anderson but unfortunately was denied because she does not have insurance and does not qualify for assistance program due to her immigrant residency status.  She was granted a gold card and we were able to get care from Harris county hospital. They diagnosed her with stage 3 and told her that surgery was not an option due to the delicate area so they recommended immunotherapy. The treatment was interrupted due to the immune system making her psoriasis flare up even worse (she already had a skin condition to begin with and the immunotherapy made it even worse) so the doctor decided to drop one of the drugs and keep her on ipi. In the meantime, the tumor was growing and was on lots of narcotics to keep the pain down so the doctors started radiation treatment on her to attempt to shrink the tumor down while on the immunotherapy. She received 6 weeks of immunotherapy and the tumor shrunk significantly. A couple of months later they repeated scans and found that the cancer had metastasized to her lungs and back even the the initial tumor and lymph node were almost undetectable. Because she receives care at a county hospital she has been seen by fellows and residents and unfortunately the first fellow we had ended her rotation when she told us the news about the spread. They recommended chemo as the next option but after 2 cycles I could see the chemo sucking the life out of my mom. The first visit with the new fellow was a nightmare. He pretty much told us that there's no cure for this and eventually the cancer will outgrown the chemo. After the two cycles and my mother barely unable to walk the doctors convinced us to just stop treatment and go home to enjoy life. My reaction to them is "so you're just giving up? Just like that?" And they went on to explain that quality of life at this point is the priority. We are not the richest people on earth, my mother has no insurance but she is one of the hardest working people I know. Does this really mean that there is really no hope for this woman because of lack of access to resources? The doctors have given up on her but I just refused to. I have turned in an application for Medicaid (since MD Anderson accepts this as form of insurance) but they said it takes 45 days to see if she gets accepted of denied.....I just graduated from pharmacy school in May and turned 25 this month.  this year has been the most challenging year of my life but I believe that it's not over until God says it's over. I am trying to explore clinal trials options but I don't know if they cost money and I am new to the process. If anyone has any information that may be helpful to my mother and my family I will really appreciate it. 

God Bless,

Maria 

 

- ps I have read some of the stories on the threads and you all inspire me to keep fighting this ugly disease. Thank you for reading. 

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slh4448's picture
Replies 12
Last reply 8/9/2016 - 7:26pm

So today I met with my oncologist. The great news is that my pet scan and mri came back clear...whew!! So I am stage 3a. Then our discussion turned to the clnd of my right groin. As many of you know from my posts and your responses about this very topic lately and my anguish and worry about whether or not to have the clnd, I decided after much discussion and many questions that I am going forward with it. My surgery is on August 26th. Around late September or early October I will then start my immunotherapy. I was definitely wavering and even as I type this, I still am, really. But both MD Anderson and my oncologist at KU agree that this is the next step that I should be taking. I will evenutally be at peace with it and have put my faith in God that everything will turn out just fine. Won't be easy or pleasant but I'm a fighter, really pretty healthy and a very good immune system, so F-it! I'm swinging for the fences with God by my side!! I really appreciate everyone's support and responses and encouragement regarding this.

Stacy

 


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desertsun's picture
Replies 2
Last reply 7/29/2016 - 9:27pm
Replies by: desertsun, Anonymous

Well after a year almost to the day of Keytruda my husband's stage 4 shows progression on his scan. He was diagnosed stage 4 in November 2013 (lungs) and completed 4 doses of Yervoy with no response. Next came genomics and targeted therapy with Mekinist for NRAS mutation. He does not have BRAF. This worked for about 10 months with the next and most recent treatment being Keytruda. He has had additional sequencing but now shows NO mutations that gave available medicines.

To back up...in 2008 he was initially diagosed stage 3c and underwent radical neck, radiation and one entire long year of adjuvant interferon.

Back to current. Given the option of Opdivo combo or Temodar. We chose temodar at this time with the hopes to give him just a shot break from immunotherapy and maybe a very slight chance for some response from the temodar. Any input on temodar would be appreciated.

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KAF's picture
Replies 13
Last reply 7/31/2016 - 11:48pm
Replies by: FromPerth, Maria C, KAF, Anonymous, desertsun, Aaron, Lee Parlier, MoiraM

I've been on the Opdivo/Yervoy combo since Early June.  I have stage 4 melanoma (to liver) w/BRAF.  I did great on the first two doses. After the 2nd dose I became hyperthyroid after being hypothyroid for over 10 years. I loved all the energy and was feeling amazing.  I did fine  on my third dose last Tuesday.  On friday night I got a headache - not a big deal.  Was with teen daughter and old friends all day at the Mall of America which can give anyone a headache. Thought nothing of it.  Headache got worse over the weekend and by Monday nothing would make it better (advil, aleve, etc...) By yesterday i was in so much pain and couldn't take it anymore so I contacted my oncolgist.  Went in for MRI & labs today and within 15 minutes of the MRI being done (I wasnt' even home yet) she called to say my pituitary was swollen and I had to go on predinosone immediately and had to stop treatment. She didn't say whether that was permanent but that we would reevaluate once the swelling went own.  I'm so angry that after feeling so amazing after the 2nd dose that a week after my 3rd I'm now on steroids and in essence cancelling the treatment.  I'm trying not to be down but this is the first day I've cried.  I'm trying to not let my daughter see and told her that I'm a fighter and I don't let a headache get the best of me.  Has anyone had positive results after only 2 treatments and when did you know?  What are my options now?  Single dose Opdivo or Keytruda maybe?  BRAF drugs?

I'm a fighter and I hate feeling helpless.  I was prepared for the rashes (which I had one and Atarax helped) and the stomach issue (which never came).  I wasn't prepared for this one.

Any words of advice or encouragement are needed!!!

thank you all.

karen

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JoshF's picture
Replies 11
Last reply 8/3/2016 - 5:02pm

Hi Everyone-

I received a call today from the Sr Clinical Leader at MD Anderson. Just to bring everyone up to speed I'm doing the Phase2 trial of Adoptive Cell Therapy with low dose IL-2 and IPI. They took the CD8+ cells from my blood about a month ago, collected Mart 1+ cells and then let them grow. She said everything looked great and earliest infusion date of September 1st. I'm nervous, excited...hopeful. I know there's not a lot of people out there who haven't done this so it makes me scared....but is there any guarantee in anything we do? I had complete response on ipi and went for a while before recurring in a big way after starting PD-1. Currently, I've had 2 doses of ipi and 3 days of radiation with 7 to go. My 3rd infusion of ipi is scheduled for Aug 12th which would make me start trial a bit later to meet washout. On top of all that I had a 4mm punch biopsy yesterday for a tiny bump on side of scalp. Love the anxiety waiting to see what that is...as derm told me, clinically I wouldn;t be concerned but it's you so... he was going to leave it...I asked him to take it so I can know. Now I have decisions...go with early date or wait for another dose of ipi....any thoughts? I know this seems like a no brainer but with stuff like this I start to lose logical thinking...indecision...one of biggest problems I've had to deal with in my life. Hope everyone is well...

Josh

Let's work for better treatments....for a cure!!!!

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Anonymous's picture
Anonymous
Replies 1
Last reply 7/29/2016 - 11:21am
Replies by: Anonymous

I sit here right now, post WLE, with my boot and wound vac on and have way too much time to think about my diagnosis.

My melanoma was found just after I started IVF. My mole was there a long time before we started IVF so I don't think it's related. We finished our IVF cycle and have 6 perfect embryos waiting for us. All of them are frozen and my doctor (Dr. Gastman at the Cleveland Clinic) recommends waiting 1 year to try and implant them.

I'm OK with waiting, it's not thrilling, but I'm OK with it. But, I've read a lot about women, even with early stages, deciding not to go ahead with pregnancies.

I know this topic has been brought up on the forum before but anyone have more recent information/ recommendations about getting pregnant after a melanoma diagnosis?

Thank you!

Alc

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Anonymous's picture
Anonymous
Replies 9
Last reply 7/29/2016 - 12:50pm
Replies by: Anonymous, desertsun, Polymath, Toby0987, RaquelP, Patrisa

I'm a stage 1 from 5 years ago.  had an annual physical the other day and LDH is slightly elevated 252 U/L.  I'm not sure if i should be worried or take any further action because of this with regard to the risk of it being melanoma as the cause.

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Casitas1's picture
Replies 11
Last reply 7/31/2016 - 8:04am

Hello all, Long day yesterday after Pet ct, two Mri and Infusion of Keytruda. Was meeting with all my Drs. Oncologist, Surgeon and Radiologist to see what next step was going to be. I was nervous while in office waiting results. My Dr. (Rock Star Doc.) came in with all the rest and looked a little serious to me! They all smiled at once and said all clear your NED!!!! I started to cry and they informed me that the only other surgey i will need is cosmetic(facial) You know I have kind of gotten used to the scars, crooked lips neck scars etc. No more cutting for me for a long while.

I just wanted to thank all on this forum for the wealth of knowledge and support over the last 6 yrs. Even though I have only been posting a little while I am hoping NED sticks around a while and finds all of you!

Best, Paul

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Lee Parlier's picture
Replies 14
Last reply 8/6/2016 - 10:14pm

While I am receiving my 4th and final dose of yervoy 10 mg I wanted to do something productive (and pass the time) so I will share as much information as I can. I have mentioned the archaic view that my Dr.'s have had with immunotherapies and their fears of the side effects. I started yervoy 8 weeks ago today under the guidance of a regular oncologist. It took a month for me to finally convince him that interferon was not an option and yervoy was my choice. I stress 2 things: 1) Regular oncologist 2) My choice I should have began my melanoma journey with a mel specialist and if I do have an option in treatment with a better chance at achieving NED, I have the final say.

I recently went to Duke Cancer Center and spoke with Dr. Salamas (mel specialist) and Dr Moscow (cancer Surgeon) I want to say it is a night and day difference in question and answer sessions to what I have been used to. I recently had a pet scan (mid yervoy treatment) which showed multiple tumors on liver etc.

Answers from Dr's Salamas and Moscow (prolly mel 101 for most) but hope there's some useful info for some.

1) What are these sobcutaneous nodules that popped up after starting yervoy?

ANSWER: They are in transit cancer that reacts to the treatment. (even though I did have a biopsy that showed some were) She said biopsies are not always reliable when dealing with this reaction and her experience showed most had some melanoma in the sub q tumors.

2) I started with 50 or so mel sub q's and I currently have 9 visible, is this a sign I am a responder?

ANSWER: I am caustiously optimistic that you are a responder based on the disappearance and shrinkage of the visible tumors. The chance of being a total responder in my experience is around 12% but you have signs of being at least a partial responder.

3) Does my chance of being a total responder increase since I will complete the 10 mg rather than the 3 mg doses? 

ANSWER: People are different but in my experience the benefit may increase the chances of being a responder by 5% with substantially more risk of toxic side effects. Sometimes more is not better.

4) My mid treatment pet scan showed new tumors etc. Is there any conclusion to be drawn?

ANSWER: Not really, The pet scan was showing activity but since I do not have a base line scan to compare it to it is impossible to say. My feeling is that the lesions were there before and are reacting to the treatment . I have seen pet scans light up and after treatment is through and it has been dead tumors that did react well to the treatment. I want a pet scan 2 months after your final treatment and we will determine if the tumors are the same, better or worse.If they are the same or better we set up the next pet scan and watch and wait. If they grow we move onto a different treatment and since you are stage 4 now, you have more options for treatments which have out performed yervoy in trials. With yervoy, there is usually a worsening before the treament kicks in even though everyone is different, most experience side effects and or inflammation from immunotherapies.

5) Would I benefit from T-VEC INJECTIONS IN THE SUB Q TUMORS? 

ANSWER: Stage 4 patient's are not eligible to receive t-vec injections and again, I am cautiously optimistic the positive reaction to the visual tumors with the yervoy that I wouldn't recommend it anyway. 

6) What kind of adjuavant therapy can I receive when I am NED (NOT IF)? 

ANSWER: There is no adjuvant therapy at stage 4. We will wait and see if the yervoy kicks in and will have a better idea after your next scans. Yervoy can take a while to rev up ypur immune system. Scans every 3 months to monitor. If you are worse, we move to something else. We have new trials daily at Duke and since yervoy was approved, we have other treatments that have shown to be more effective than yervoy.

 

There were some other things we discussed but suffice to say my experience with a specialist was at least more informative than I have been accustomed. I didn't hear all good news, didn't hear all bad but I did feel like I had some direction when I left.

Will I be a responder to yervoy? Don't know but glad I made the decision and wouldn't change it.

Would I begin my journey with a mel specialist if I had a time machine? Absoluteley and a surgical onc too. 

I would compare a regular oncologist and a melanoma specialist like this:

 

You are going to a big city you have never been to. You're nervous about losing your way. You miss a turn and you are lost and you are holdin your map quest directions as you drive. You may well find your way back on the right path but you spent a lot of valuable time lost.

You are going to a big city and turn on your GPS. You get future instructions on turns and what lane to get in. You make a wrong turn and the GPS gets you back on track. 

Maybe over simplifying but I thought of this as I was cussing my way out of Durham trying to find my way. My yervoy drip is beeping. Best of Luck to everone fighting. Can be scary, but it's not hopeless 

 

Lee Parlier

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