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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nlac26's picture
Replies 9
Last reply 5/4/2016 - 12:50pm

Hey everybody! April 14th ended my first cycle of the clinical trial I'm participating in. What a blessing to say I finished without any problems or major side effects. My study involves Nivo infusions every 2 weeks and I take two pills a day of what the Trial coordinators are now offically calling "epacadostat" instead of some big long number. It's always an interesting trip to the hospital every couple weeks because you never know what new thing the trial people have come up with that has to be included. One trip it could be, we now need 2 EKG's, one before infusion and after...or a stair walking stress test or more blood. I never know, I just roll with the punches and am very fortunate to have a wonderful, humourous trial coordinator I work with every single time. Sometimes we get to joking and laughing so loud I'm sure they can hear us all the way down into the waiting room. Hey, if I've got to be there, it's nice to have someone that can make me laugh and who's standing in my corner fighting for my well being too. 

I had my first follow up CT on April 25th which is standard for the end of each cycle. We had held out for great news and some what recieved what we prayed for...but as we all know, melanoma is a tricky bitch and can surprise you on a dime. My original tumor in my left axillary lymph nodes measured 25 x 23 mm on 02/19/2016. After one full cycle of treatment, it has shrunk to 24 x 19 mm. I mean, that's not the best but at least it's not growing! And that's only 4 infusions so far. The weird part about the scan was the NEW tumor that popped up right next to it, side by side, measuring 25 x 18 mm. Talk about a jaw dropping moment when the doc first pulled up the scans. But what I was told and what my scan read out as,  it is indicative of necrosis and more than likely dead. What?! So, in a matter of 8 weeks, I had another large tumor grow and then just die? Has anybody else had this before? It's hard to know what to feel exactly. Sucks there's a new spot but if it's dead then should I throw a fit or just move on? The doc did say there is no certain way to tell if it's completely necrotic without removing it and we're not opting for surgury right now. We decided to stick with the plan and trial and keep pushing forward. Last Thursday the 28th i had my first infusion of cycle 2. I'm fortunate the drugs don't bother me too bad. I'm like a sleepy zombie when I walk out infusion days and I nap pretty good for a couple days, then it's back to work and life like normal. My husband and I actually ran a 5k Saturday morning and it felt awesome to be out moving in the fresh air.  Here's to keepin' on and reaching forward! God bless all of you out there and best wishes! Niki

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Sflynn's picture
Replies 11
Last reply 5/4/2016 - 11:13am

Hello everyone 

My husband was diagnosed in August 2015 stage IV melanoma with lung and brain mets, BRAF positive and can't find orgin. 

He received 1 Opdivo treatment which had to be terminated due to a severe reaction. It took approximately 6-8 weeks to clear it up with high doses of steroids. In this time he also received 10 WBRT and 2 SRS treatments. 

In November he started the Taflinar Mekinist combo. This made him severely lethargic, loss of appetite and dehydrated. He made it 4 weeks on the treatment before ending up admitted to the hospital on Christmas Eve with saddle pulmonary embolisms and DVTs. After multiple scans it showed that there was more brain mets, edema and hemorrhaging on his brain. They discontinued treatment and sent us home 6 days later on hospice care.

Which brings me to today.. He decided to try this treatment again and sign himself out of hospice. The latest pet scan, MRI and catscan showed significant progression and new signs of the metastic disease in both lungs (2 lesions one fairly large) and brain (15 mets-3 large that are hemorrhaging). Also in his right femoral chain. Hemorrhaging of lesions, swelling, Short term memory loss, seizures, loss of mobility are just some of the new symptoms. 

I support his decision to try this treatment again but  I can't help to think is it the right treatment?? I guess I just looking for some positive results or the honest truth from others that are in the same stage. 

 

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MELK's picture
Replies 11
Last reply 5/4/2016 - 1:50am

I had melanoma on mt liver but then it went into my bone marrow. I was put on Keytruda and had a few blood transfusions and according to my blood results the Keytruda killed the cancer in my bone marrow. It saved my life. I had three infusions all up but then got the side effect of liver autoimmune disease, where my own body was attacking my liver, inflamming it and blocking the bile duct and giving me lots of stomach aches. I was put on steroids and had a two week break from the Keytruda.
Two weeks after going back on the Keytruda, I started getting pain in my back. A CT scan showed new tumors in my spine, cervical and thoracic.
My Oncologist says the cancer has become resistant to the Keytruda, in other words the cancer is blocking my T cells from killing them.
I am wondering if anyone has had similar experience. I had another Keytruda infusion today as I want to give it a couple more goes, bug i am also thinking i could ask about other PD 1 drugs.

Being positive for everyone out there
Mel

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mikeygib's picture
Replies 8
Last reply 5/3/2016 - 11:39pm

Hi,

I have a mole that I have been keeping an eye on for a while and I have a doctor's appointment booked in a couple of weeks time. However, can anyone shed some light on the image below? Thoughts on whether it's a melanoma or not? I am going crazy waiting and can't wait for the doctor's appointment !

 

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Charlie S's picture
Replies 5
Last reply 5/3/2016 - 10:31pm

It is almost an out of body experience.

Getting the central line shoved down your neck to start is the first insult.

That is far from the first funjet though.

When they hang that first bag of aldesleukin brought up from the lab by security because the price tag is a tick more than 7 grand,a copy; well, you know this ride is not going to be cheap, let alone easy.

Then it starts to kick your ass with a soft shoe.

The first sensation  is a sort of chemical thing that hits the brain that tells you there are drugs coming into your body.

Then your body starts to tell your brain that yes, you are under the influence of toxic chemicals; and in response your brain says "yeah, I know that"

It is a strange sensation..

I want no judgement posts about what I am doing right now nor sympathy.

I'm just reporting what is the start of one bag every eight hours of my choice to start.........again.

Melanoma is not for sissies.

Cheers,

Charlie S

 

 

 

 

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Anonymous's picture
Anonymous
Replies 2
Last reply 5/3/2016 - 5:50pm
Replies by: Edwilcox, Janner

Background - I've had 5 biopsies in the past year, two resulting in moderate to severly atypical cells that required excisions.  Fair skin, used to tan and not use sunscreen pretty regularly.  

I just went in for my yearly skin check.  Had four more biopsies done.  Still waiting on those results.  In the meantime, I'm worried about three spots on me that I was told to "wait and watch".  One is a large mole I've had for years, although it's on my lower leg and that entire general area seems to be itchy (not just the mole, whole shin, although sometimes the mole) that I don't think has changed, but I could be wrong.  The other two are newer and look slighty bad, but aren't very big.  

So, the question is, should I have insisted those get biopsied, too?  Should I wait and watch?  Should I call back and ask to have them biopsied as well?  Wait on results from the others and go from there?

Thanks!

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Randy437's picture
Replies 3
Last reply 5/3/2016 - 3:21pm
Replies by: Anonymous, Randy437

Can anyone recommend a melanoma specialist in the St. Louis area?  My current doctor (Linette) is leaving the city and I'm not certain of other resources.

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MELK's picture
Replies 6
Last reply 5/3/2016 - 2:39pm

Hi All, 

This is my first post. 

I was misdiagnosed with stage IV breast cancer in August 2014, and put on chemo for 4 months. This misdiagnosis was because I had a tumor in my breast and it is very unusual for melanoma to metastasize to the breast. I also had lesions in my lungs, liver and bones. 

I was given Braf/Mek combo in January of 2015. It worked. Lots of my tumors were gone, only a couple in the liver remained. I was feeling really well. I had been doing lots of bush walking and going to the gym. I had gone back to work and was feeling great. 

In January, 2016, I went to the gym and the next day I thought I must have overdone it, as that’s what the pain felt like. After three days though, the Panadol were not working. I had really strong pain all around my rib cage, in my legs and my arms. I saw a GP to get some stronger pain killers and found out I had very low oxygen levels, so I went to hospital. 

My bloods were quite alarming. My haemoglobin and platelets were very low and my LDH reached 21,000. My oncologist and his team were puzzled. I also had some fluid on the lungs, which I had drained and analysed for any infection or cancer cells. No infection or cancer cells found in the fluid. I also had an MRI of my spine and a biopsy of my bone marrow. The cancer had gone into my bone marrow. At first my Oncologist thought it could be a completely different cancer, but it was determined it was the melanoma. Apparently it is very unusual that melanoma metastasize into the bone marrow. I not only had the cancer spread to my bone marrow, but I had more tumors/lesions in my liver and many in my thoracic and lumbar vertebrae and pelvis. I was on high doses of Oxycodone and I had to have several blood and platelet transfusions. Then I was put on Keytruda.

After a week or so and a few more blood transfusions, my bloods came right and I went home from hospital. I was there for 21 days. I was so not expecting “getting resistant” to look like that.

I am having some success with the Keytruda, although experiencing some auto immune of the liver and we are dealing with that presently. 

Mel 

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Scooby123's picture
Replies 1
Last reply 5/3/2016 - 2:33pm
Replies by: WithinMySkin

Hi guys,

Anyone got any good travel insurances due to having a brain met treated resent my travel insurance company will not insure me . Some ones I've tried which say been turned down for travel insurance try us have been within the 2000 pounds mark. 

Hope you all having a good day 

Scooby23❤️

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scots's picture
Replies 12
Last reply 5/3/2016 - 2:03pm
Replies by: gostan, scots, Bubbles, BrianP

I may be starting a clinical trial using glembatumumab - vedotum. I was wondering if anyone had any experience with this drug? Side effects/ opinion.    I'm braf negative. The oncologist is also trying to see if she ca get my insurance to pay for MEK Inhibitor.  Any opinions the MEK inhibitor?

 

thanks,

scot

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Anonymous's picture
Replies 2
Last reply 5/3/2016 - 8:35am
Replies by: debwray, Anonymous

Hi Folks,

Had infusion 2 -18 days ago. Currently Stage III Melanoma-on drug  trial Keytruda v placebo to prevent recurrence.

10 days after first infusion had dramatic inflammation and rash following route of likely lymph redirect- round thigh and buttock - (inguinal and pelvic lymph dissection late Dec 2015). Resolved to bruising- Lymphoedema practioner was interested and took photos.

12 days after second infusion more probs- woke up and had lost significant movement in melanoma leg- back on elbow crutches as so painful to walk. ( Like  10 days after total knee replacement September 2015)

Lymphoedema swelling pronounced- can't even lift foot to drive to docs. Running temps= was assessed for spinal lesion- new MRI negative.  crp 100 plus ESR 20 . Movement issues reduce so discharged from hospital after precautionary overnight stay but then end up with high temps and aggressive cellulitis type rash from above knee to ankle that evening.

Antibiotics started for cellulitis by GP. fiollowing morning. Movement still painful and restricted but not as severe as initially. Redness much reduced.  Temp still spiking intermittently.

Question- Has anyone else had violent rashes at the site of previous recent surgeries ( Knee replaced  28 September 2015 )

Are the violent rashes likely to recurr ? Anyone else had anything similar ? Its all rather strange

 

 - 

 

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Replies by: Anonymous, Emma_Melbourne, stars

I am in Australia, and just diagnosed, and I wasn't given staging which fits the model that Americans are using.

 

Can someone tell me what stage you regard this as in the USA please?? (I know it's below the epidermal and into the dermal layer.)

 

Here's the info I have on my Synoptic report:

Malignant melanoma, superficial spreading subtype

Site: Right forearm

Clark level: 2

Breslow thickness: 0.25 mm

Ulceration: absent

Cell type: Epithelial

Mitotic index: Nil

Lymphovascular invation: Not seen

Neurotropsim / desmoplasia / satellites: Not seen

Features of regression: Present

Associated naevus (type): Displastic junctional naevus

 

Microscopy:

There are atyypical melanocytes at the dermo-epidural junction and small numbers of atypical melanocytes in the papillary dermis. The junctional melanocytes show nested and confulent growth and pagetoid spread. The dermal component is surrounded by a dense lymphcytic inflammatory infiltrate.

 

Thanks in advance for any help you can give me.

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spiderman's picture
Replies 4
Last reply 5/1/2016 - 9:00am
Replies by: keepthefaith11, Bubbles, Anonymous

As melanoma warriors we face an interesting dilemma with respect to vitamin D levels. We know that melanoma incidence is correlated with low levels of vitamin D. We also know that sun exposure increases vitamin D levels. The dilemma is that sun exposure is known to increase the likelihood of melanoma incidence.

Since my diagnosis, my approach has been to still get some sun exposure, but do it responsibly (i.e. no midday sun, no extended periods, reasonably well protected with sunscreen, etc.). I have actually been doing this for the past 20 years, and even though I recently got diagnosed with my melanoma, I feel quite confident that IF it was a result of excess sun exposure that it was in my younger years when I did not practice more responsible sun habits.

As I continue to ponder my approach, here are some questions that hopefully some knowledgeable people have some insight on:

Are supplements as good as natural sun exposure? I suspect that they are not, although they likely help and I am taking them now.

Does it make sense for everybody with melanoma to get their vitamin D levels tested just to see if it is abnormally low and would warrant more aggressive action?

Does using sunscreen eliminate the natural absorption of vitamin D from the sun? I know that it blocks the harmful rays, but are those the same rays that give us our vitamin D?  

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sseuregitong's picture
Replies 7
Last reply 5/1/2016 - 12:33am

Hi everyone,

I was recently diagnosed with a large (10mm) melanoma behind my ear. I'm a 30-year-old male in fairly good health. As far as I know, I have no family history of melanoma except a half-sister who was diagnosed with stage I about 10 years ago and has had no further complications. I live in Korea, where melanoma is extremely rare. I don't speak the language well, so my treatment has been very stressful and often confusing. My test results so far have been good, though.

PET/CT - no evidence of distant metastasis

Ultrasound of lymph nodes - no evidence of metastasis

Wide excision biopsy - no evidence of local metastasis

While I'm of course happy about these results, I have a few concerns about my treatment here.

1) I did not have a sentinel node biopsy. From what I've gathered online, a sentinel node biopsy is standard procedure for Stage IIC, especially for a melanoma as large as mine. I will be asking my oncologist about this when I see him again in a couple days.

2) My dermatologist told me that one year of high dose Interferon Alfa injections is mandatory treatment for Stage IIC in order to prevent recurrences of melanoma. However, when I met with my oncologist, he told me it is optional, and many doctors think the severe side effects outweigh the potential benefits. Further research online suggests that Interferon is not particularly effective in reducing recurrence rates. Is Interferon necessary/worth the risk for treatment of Stage IIC?

Thank you for your help!

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Ginger8888's picture
Replies 12
Last reply 4/30/2016 - 12:30pm

Has anyone tried this?...I have been doing some reading on this in hoping it will be come legal in my state soon.I've read a lot of success stories..

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