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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Tabbott's picture
Replies 3
Last reply 6/26/2017 - 3:06am
Replies by: pharmasmruti, Tabbott, Anonymous

Could someone recommend a Melanoma specialist in Alabama? We live near Mobile, Al but willing to travel for the right specialist. I appreciate any information provided. This is all very new to me and my family. Thank you!

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adriana cooper's picture
Replies 2
Last reply 6/26/2017 - 1:05am
Replies by: adriana cooper, Bubbles

There was a post here some time ago (I think) about rectal administration of medication, specifically BRAFi for those who can't swallow. I have unsuccessfully searched. If anyone can find or experience with it, would be appreciated. Also with opening Taf. capsules and mixing in yogurt or the like (just started this with Adriana today as a last chance.) she has been taking some of her meds rectally (oxy, dilauded, dex, topomax) but have gotten some oral replacements.  

Adriana update coming. Obviosly not good.

Thanks, Rob

Adriana

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Jubes's picture
Replies 4
Last reply 6/25/2017 - 6:35pm

Hi all

i haven't posted for a while. I've been waiting for my next pet on July 4 (no long weekend here)

meanwhile I have a next door neighbour who also has stage 4. He did 2 years of Pembro, had had two new mets since he was on it and 5 months ago had to have the duodenum surgically removed because the new met was between that and his pancreas. He is  just starting to recover from that op. It was traumatic. He is sbout 70. His last ct was clear but he is very thin and naturally he and his wife are thinking what the next plan would be if another met appears. The original was in his media Steinem but he had also had it in his adrenal gland and had that respected too. He's been off pembro since January and has not had too bad side effects. When h gets them they tend to be bad rashes and vitiligo. 

His doctor says he would not put him back on keytruda since he had new mets while on it, so the next step would be chemo which my friend is not keen on. 

Does anyone have any ideas of what the most effective next step would be if not chemo? I know there is the new treatment that Georgina long presented at asco but apparently that has bad side effects. Does anyone know anything about that?

thanks

 

anne-Louise 

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Laurus's picture
Replies 6
Last reply 6/25/2017 - 2:51am

Hi everyone,

I'm 35 years old and I was diagnosed with stage 3b melanoma in November 2016. I live in Japan and melanoma is very rare here. There is very little information about the treatment of melanoma. So I need your help.

I had the surgery to remove the melanoma around the knee and two lymph mets around the groin/pelvis in December 2016.

I had 4 infusions of Opdivo from January to April 2017 to treat one more lymph met around the pelvis. But PET scan showed old one(same size) and new lymph met(11mm) around the pelvis in April, so I had 2 infusions of Yervoy from April to May 2017. And I got side effects, which were severe diarrhea, headache and fever. I've been taking Prednisolone but sometimes I still have headache and fever.

My latest PET scan showed the growing lymph met from 11mm to 19mm in June 2017.

Next week, I'll start a infusion of Keytruda and have a CyberKnife for the growing met. In Japan, the Yervoy/Opdivo combo and Yervoy/Keytruda combo haven't been approved. After some infusions of Keytruda, I'll try some infusions of Yervoy again.

My doctor is a specialist in cancer immunotherapy and he thinks the CyberKnife is the best way and the only option for me. I did some research and I've just found Keytruda might work after failing Yervoy/Opdivo, so there is a ray of hope of the Keytruda treatment in my case as well.

And I've just found there is T-VEC clinical trial here. Currentry I've been searching for other ways.

Are there any other solutions to this situation? I am very interested to know if anyone else has/had a similar experience to me. CyberKnife is the only option in my case?

Thank you,

Takuya

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dhwriter's picture
Replies 2
Last reply 6/24/2017 - 7:08pm
Replies by: dhwriter, Janner

I had my followup with the nurse practitioner today about excision of a biopsied moderate atypical mole. Here is the pathology report:

MODERATELY DYSPLATIC COMPOUND MELANOCYTIC, EXTENDING TO THE PERIPHERAL EDGE

Gross Description: The specimen received in formalin labeled with patient's name and as "lower back left of midline" consists of skin measuring 0.5 x 0.5 x 0.1 cm. ES, 2y / 1bs

Microscopic Description:

Sections demonstrate skin with single cells and nests of moderately atypical melanocytes which bridge adjacent rete ridges. Within the dermis there is papillary dermal fibroplasia and an inflammatory host response. A dermal component of the nevus is present.

Based on the report I was okay with a conservative excision. However the NP said she would be doing a WLE with 4mm margins. I decided to go with a 3 month observation of the area to see if anything recurs and then go from there. The mole was biopsied because it was offered by the NP, not because of any issues with mole. Had it since I was early 20s, possibly late teens, 34 now. No history of melanoma, family or otherwise.

A 4mm margin WLE felt excessive, but she said it was standard for a 5x5mm biopsy. Does this sound right? I've read a small conservative excision should be enough.

The NP seemed perfectly okay with observation. I'm just confused and a bundle of nerves.

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Julie in SoCal's picture
Replies 10
Last reply 6/24/2017 - 6:44pm

Greetings Friends!

We have a plan!!! And it's a good one!

Next Tues afternoon I will start my first (of four) rounds of a chemo combo (carboplatin and pemetrexed). The thinking is that this is the treatment that makes treating two cancers (Melanoma and NSCLung Cancer) comparatively simple. It's quick (only 12 weeks) and very well known. After being in the land of amazing new medicine (I'm talking to you Ipi and Pembro!!), it is strangely comforting, knowing that there shouldn't be any mystery side effects to deal with. After chemo I will start 35 or so sessions of radiation. Then Larry the lung cancer will have been cut, poisoned, and burned!

This is my first trip into the chemo-beamo world and while I like the "known" aspects of it, I'm not really wild on those known things happening to me.  I know I'll be fine. I have an amazing team and am surrounded by crazy friends and crazier family.  So I'll be very well supported.  But I'm still a bit apprehensive. And of course, I may (or may not) get to keep my hair.  

This has been one long, scary roller coaster ride and I've hated waiting to figure things out. But this waiting time has given me opportunity to think and pray about what I want in treatment. It's easy to say that I want to be cured (and my 23 year old body back as a side effect). But it's much harder to figure out what I'm potentially willing to give up. This extended time has helped me figure this out. And I'm so grateful.

Thanks for coming along with me on this long, scary ride.

Shalom,

Julie

Stage 3  (TXN2cM0)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, (intransits) 2013 IPI, (intransits) 2014 PEMBRO, (intransits resected in 2017) 2017 Non-small cell lung cancer VATs

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baesill's picture
Replies 4
Last reply 6/24/2017 - 6:42pm
Replies by: Ed Williams, baesill, Patrisa, Anonymous

I have a feeling this is going to be me. I had an X-ray almost five weeks ago where the shadows looked the same or maybe worse and another one yesterday that was the same. However this past week feels like the meds started kicking in. I had first side effects--super high fevers, slightly elevated liver numbers, and more. 

My big scan is next week. I'm already sad.

 

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lesleynunn's picture
Replies 7
Last reply 6/24/2017 - 6:01pm

This forum has been a tremendous rescource for me, thank you to all who contribute!

My father, age 59, was diagnosed with Stage IV melanoma on April 14th.  Brain mets x6 was the first area found, 1wk later spinal mets were found.  He had an emergency craniotomy, 2 lesions removed, has done gamma knife x1, 12 rounds of IMRT on brain and spine.  He has had 2 opdivo infusions.  F/u MRI showed remarkable improvement in brain, 1 new lesion,  they scheduled him for another gamma knife.  Spinal lesions were smaller as well.  He continues to have bowel and bladder dysfunction.  He is walking unassisted but has pain and weakness in right leg.  

No primary site has been found, he is BRAF neg.

We are not specifically seeing a melanoma specialist, however I have been pleased with the care he has recieved thus far.  I just wanted to "compare notes" and make sure we are doing all we can.  If anyone has any suggestions as to questions I should ask his team of doctors, or treatment recommendations, I greatly appreciate any thoughts/experiences/recommendations you are willing to share.  I have read some about leptomeningeal metastasis, mostly bad, but his doctors seem hopeful.  

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Shaneswife's picture
Replies 9
Last reply 6/24/2017 - 5:58pm

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GAngel's picture
Replies 10
Last reply 6/24/2017 - 5:56pm

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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mrsaxde's picture
Replies 3
Last reply 6/24/2017 - 3:27pm

As promised, I wanted to come back to give everybody an update on my experience in the anti-LAG3 (BMS986016) trial at Johns Hopkins.

I had my first infusion on Tuesday (6/20). Pretty uneventful in my case. I received Opdivo first, followed by the experimental medication. Everything went smoothly and I have experienced no side effects so far. The research nurse who is overseeing all of us on the trial there told me that another patient who also started on Tuesday had an entire range of side effects. But I've been just fine. As I told her, I hope outwardly things go smoothly while on the inside it's eating up the cancer. But I won't know for sure until my first scans, which I think come at the end of the first or second 45 day treatment cycle.

My next infusion is on July 5 due to the holiday. I'll update again after that one, or sooner if I start noticing any side effects or anything else noteworthy.

-Bill

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Gene_S's picture
Replies 1
Last reply 6/24/2017 - 1:50pm
Replies by: Anonymous

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

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TexMelanomex's picture
Replies 6
Last reply 6/24/2017 - 12:19am
Replies by: Anonymous, Nick C, TexMelanomex, MichelleRHG, jennunicorn

Hey Warriors!

I recently finished my 3 month (post surgery) CT and MRIs and everything came back clear which was awesome to hear...but as many of you know there is sometimes a good and not so good result from our visits.

The not so good was the identification of a lymph node that was "concerning"...so a week later back to MDA for ultrasound of the neck and fine needle biopsy. Interestingly, the node of concern was not of concern to the radiologist but she identified a different node on the opposite side of the neck that looked "possibly problematic" so the fine needle biopsy proceeded just in a different location on the opposite side of my neck. I am learning that phrases such as these are not what you want to hear in an oncology hospital BUT they don't always mean anything terrible.

I got the call today that the "possibly problematic" node was benign and I got the 3 month NED badge today.

In other super exciting news the donor site for my skin graft is finally healed and closed!! and the graft site is nearly completely healed. To my surprise and delight it is much smaller than it started out and doesn't look too obvious since its on the crown of my head and it just looks like I'm balding there. Never thought male pattern baldness would work out to my advantage!

I am taking some time to get caught up on all of you and I just read that Jenn's scans are looking good which is super exciting! I hope you are all fighting, living life, and enjoying each and every day as much as you possibly can! Stay in the fight Warriors!

 

Tex

Tex

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cammeronwall's picture
Replies 1
Last reply 6/23/2017 - 10:54pm
Replies by: jennunicorn

Hi all! I hope you're feeling good today! We received our news on my scans from yesterday. All clear other than an inconclusive tiny spot on my liver but the surgeon said it's not a tumor. We are scheduled to speak with plastic surgeon on Monday then hopefully set for wide excision sentinel biopsy next Friday. They said I have a 30% it will be found in my nodes... first biopsy on templecwas .61mm (shave), second biopsy ( punch) was 3.15mm...so ... to me 30% sounds low. My husband was very upset. Thoughts? 

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Hi,

So I'm a stage IV melanoma patient.  I've been on medical leave since 3/24 when I found out I had a brain tumor which was aggressivly growning after taking a break from Ipi/Nivo treatment due to complications.  I had been off treatment for about 5 months but tumors were shrinking and then bam, brain tumor.  They were quite concerned that the tumor would cause motor issues if not removed immediately so I was immediately scheduled for surgery.  I ended up with loss of feeling in my right leg and foot which is coming back slowly but still not all the way back.  Then the MRI 10 days post op showed the tumor growing back.  The original post op MRI was perfect.  Now the drs were really moving quickly.  They wanted to start radiation with nivo immediately.  It was a wednesday so we started on Monday.  Things were going OK until I had severe muscle cramping and spasms in my right foot then leg then abdomin and neck.  Of course this was memorial day weekend.  The drs are confident that this was a seizure due to edema from the radiation.  They put me on Keppra and informed me about a driving ban.  So long story longer... I have to go back to work tomorrow and I can't drive until November.  My husband is going to drive me into the office one day a week and I'm going to work from home the other four days.  Honestly I don't feel ready to go back or to deal with the schedule juggling.  I had a busy day today between watching my two children, going out to lunch with my in-laws, and getting ready for tomorrow and sure enough I had another seizure.  It was smaller and I was able to quickly take some adovan to stop it but I was home alone with my 5 year old and this always makes me nervous.

 This is my second medical leave since my initial diagnosis last year.  Mentally I'm still a bit of a mess and with all the meds I'm not feeling up to leaving the house or being glued to my work computer.  What if I have another seizure?  Does the clock restart on my driving ban?  Just when I think the cancer has taken everything it's going to take then it goes and takes away something else.  I'm still bummed out about losing my hair from the radiation.  I'm still bummed out about gaining twenty pounds from the steroids.  I can't really exercise because of the numb foot.  I used to be a runner.  Now I'm a tentative walker.

How have you handled working and stage IV?  I guess I've just been trying to power through it but lately I feel like it's all catching up to me.

Thanks,

Jennifer

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