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.

Expand/ Collapse Topic
 
Replies By
View Topic
Nickm's picture
Replies 5
Last reply 4/3/2014 - 10:28pm
Replies by: Nickm, Tim--MRF, benp

I am writing on behalf of my father who was diagnosed in June 2013 with a mets in his lymph nodes as well as his lung.  He had successful surgery in Dec 2013 and was recoverying well until he sneezed one evening, had a massive brain hemorrhage and we subsequently learned that he has two mets in his brain one of which obviously bled.  He has had wbr since and 1 tumor appears stable(the one that bled) and the other has grown minimally.  Our onco has said there is nothing left to do because of the tumor that has grown after wbr and is asking us to wait 6 weeks to see if he is stable at which point we can possibly look at systemic treatment.

My question is to those of you with profound experience - does the oncologists approach sound right?  I believe in second opinions and also thought that the goal was to shrink rumors that are growing.(I do relize that wbr didn't work however)

thank you in advance.

 

m

Login or register to post replies.

Everymoment's picture
Replies 5
Last reply 4/4/2014 - 2:36pm
Replies by: tcell, Everymoment, kpcollins31, Anonymous, KMick

You know, I keep thinking there might be a time when every ache & pain doesn't bring me to my knees grappled with fear. My mind is my worst enemy. Once you have melanoma, it is part of your mindset. I realize that for my entire adult life, I live in this state if acute awareness that my body does not function like everyone else's. It's kind of sad:( I realize that I'm not like other people my age.
Isabell

Login or register to post replies.

Editor's summary

Melanomas carrying a mutant BRAF gene generally respond to treatment with BRAF inhibitors, but in the majority of cases resistant cancer clones emerge. It has been shown that such resistant clones can nevertheless exhibit reduced fitness when the drug is removed. This paper demonstrates a molecular mechanism underlying this observation. Rene Bernards and colleagues show that a signalling cascade leading from suppression of SOX10 to increased expression of the EGFR (epidermal growth factor receptor) gene confers resistance to BRAF inhibitors and at the same time reduces melanoma cell proliferation and induces senescence in the absence of inhibitors.

With preliminary evidence that this pathway is induced in patients who have developed resistance, the authors suggest that temporary withdrawal of BRAF inhibitors — a drug holiday — would reverse induced EGFR expression and thus may re-sensitize melanoma cells to BRAF inhibition when treatment is reinstated.

 

http://www.nature.com/nature/journal/v508/n7494/full/nature13121.html?WT...

 

Login or register to post replies.

http://www.nature.com/news/cancer-treatment-the-killer-within-1.14955?WT...

 

Cancer treatment: The killer within

The immune system can be a powerful weapon against cancer — but researchers are still grappling with how to control it.

 

02 April 2014

 

(this is quite long and covers melanoma and other cancers)

 

Login or register to post replies.

ilikepralinen's picture
Replies 4
Last reply 4/3/2014 - 3:31am
Replies by: ilikepralinen, Bubbles, POW

Hi,

I am 27 Year old Indian living in Germany. End of Feb 14, I had consulted a Neurologist (due to Headaches). Neurologist happened to see a 1.7 cm lesion in Brain MRI. I was referred to Neurosurgeon, who did a Stereotatic Brain Biopsy (in Mid of March). Biopsy results : Metastatic Melanoma. As of now I am undergoing Radiation Therapy called Brachytherapy.

Last week I also met the Dermatologist. Body examination did not reveal any Melanoma. CT scan of Thorax, Abdomen and Neck has not found any other Metastase. Dermatologist thinks its Melonama in Brain. (According to her, its quite rare.) As i have only headache, Doctor wants me to wait till end of May. (End of May she wants to do : PET - CT scan, MRI for spinal Cord and other Blood tests).

a. Does anyone have information about this type of Melanoma?

b. What do you guys suggest?

1. Should i wait till end of May?
2. Should i consult another Dermatologist?
3. Or was the Biopsy result wrong in the first place?

(My Neurosurgeon and Dermatologist are one among the best doctors in Germany)

Login or register to post replies.

Replies by: hbecker
BostonTerrierFan's picture
Replies 6
Last reply 4/23/2014 - 7:54pm

I was recently diagnosed Stage 3, & I underwent lymph node dissection under my left armpit a few days ago. I have had decent drainage into the line & bulb, but also some drainage from the incision site. The surgical strips & dressing are close to saturated. Can anyone tell me if this is normal? Also, how is the removal process? Is it painful?

Login or register to post replies.

phtreehuggr's picture
Replies 3
Last reply 4/4/2014 - 3:55pm
Replies by: phtreehuggr, kathycmc, Anonymous

My mom had this done years ago and there was nothing found in the sampling of nodes they took. At the beginning of this year they found a golf ball sized tumor in her abdomen, and later other ones, regionally. The excuse for this is that there is an small error rate in the test.

WHAT? I understand nothing is perfect, but c'mon, that is a piss poor excuse. She went back for skin checks every 6 months following the SNLB and nothing was found. They never checked her glands. Had they done so, they would have felt that her glands in her pelvis were clearing swollen. She never noticed them until after the diagnosis, and then it became apparent to everyone that it was clearly more swollen that the nodes on the opposite side.

My initial thought was...why were they just doing skin checks and not scans? Of course, for the small number of people that experience was she has experienced, insurance agencies are not going to cover expensive testing like this just for 1-2% of people.

Following her diagnosis, she gets a PET scan. For which she is told is 97-98% effective in detecting melanomas. Wrong again. Her scan showed nothing other than the golf ball size mass in her abdomen...turns out there were several other, smaller (but not so small they shouldn't show up on a PET scan) areas that contained melanoma.

Are there no alternatives? Going forward, how is she suppsoe to know whether or not the melanoma has resurfaced?! I mean, really, I just don't get it.

Login or register to post replies.

Replies by: kccaddy23, Anonymous, Tim--MRF, Scuba Doc

We are desperate!  My brother has stage IV melanoma and was told there is nothing else they can do for him.  There is a drug (MK-3475) Anti-PD-1 inhibitor that is available for expanded access for compassionate use from Merck.  Since he had a seizure a couple of weeks ago and has new brain tumors they state he is not eligible. I’m hoping someone may know of a way to get an exception to the rule and get my brother access to this drug.  His doctor, Stephen Hodi from Dana Farber said Merck refused to allow him to receive the drug but would not put their refusal in writing.  We were told he only has weeks to live and that was last week so we are desperate for him to get this treatment.  We will sign anything releasing them of any liability if anything happens to him.  Please let me know if you have any suggestions or any other options you think we can try.  We are even open to anything at this point.  Thanks!!

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 1
Last reply 4/2/2014 - 3:31pm
Replies by: Anonymous

 I cannot find a post from April 1st that discussed errors on scan reports so that I could respond to it. Anyone  know why it is no longer posted? People like to read threads so that replies make sense.

 I thought that  others would be interested in knowing that I to have had a bad experience at The Angeles Clinic radiologist's missing mets on my scans more than once.

I have also spoken to other patients at The Angeles Clinic that months after receiving their scan reports from the Radiologists at the Angeles Clinic that other doctor's like neurosurgeons, and other surgeons have found that scans reports were not correct.

In my particular case, I have been going to The Angeles Clinic "On and Off" cliniical trials for yrs. There are 2 Radiologists that read scans at The Angeles Clinic. Unfortunately, and to my dismay, BOTH Radiogists have missed mets and made errors on my scan reports.  I know get at 2nd opinion on all my scan reports. It is very disheartening that you cannot trust the Radiologists reports at The Angeles Clinic.

I want to WARN others, particularly patients at The Angeles Clinic, to get a 2nd opinion on Scan Reports. It is better to be safe than sorry.

 

 

Login or register to post replies.

tcell's picture
Replies 7
Last reply 4/5/2014 - 9:36am
Replies by: BrianP, tcell, pigs_sty

Hi all,

I have been following this forum fo a few weeks now and find it very helpful and encouraging. I really admire people here and the strength they show in fighting melanoma or taking care of their loved ones.

I am 35 years old, husband and father of a daugher of 1 1/2 years and probably one of the few European members (it seems to me) of this forum.

I have had lots of moles and spots on my body all my life and was used to seeing a dermatologist on a regular basis to get all of them checked. Always tried to avoid to much exposure to direct sun, always used factor 50 sunscreen as I was very aware of my high risk

On January 29 of this year I went to our local university hospital's ER after one month of coughing and 2 nights of severe pain in my thorax. The x-ray showed liquid between my lungs and pleura, CT of the thorax showed something on my pleura, lungs and the top of the liver and adrenal glands as far as visible that according to the doc looked like metastasis of a malignant rumor.

I was admitted right away and 2 days later a biopsy was done and a drain put in to get rid of the liquid. The surgeon told me that it was obviously a malignant melanoma irght after the operation.

Long story short: Pathology report and PET scan revealed that I had stage IV melanoma with mets in lungs and liver, adrenal glands, pleura, abdominal membrane, hip bones and vertebra TH 10. Luckily nothing in the brain. Tumor is BRAF positive, C-Kit negative. Primary unkown.

I spent one month in hospital where in the beginning they were not so sure whether I would survive as my blood params were really bad and there were 3 big mets attacking my liver

Luckily they have a research group specialized in melanoma treatment taking part in a number of trials so I have a very competent team of specialists to take care of me.

I am now taking GSK's Tafinlar + Meikinist combo (the latter through the compassionate use program as apporval for Europe is pending). Judging from the rapid imporvement of my blood params they think that I respond really well to the meds. I have had not side effects at all and will pick up work again next week.

I know that this may only work well for a limited period of time but I am trying to focus on the present and to be happy with what I have.

Just here to say hello to verybody and tell you how much I appreciate the discussions in this forum and how much self-confidence they give me to be ready for my own fight! Looking forward to taking part!

// Chris

 

Login or register to post replies.

Bruce Davis's picture
Replies 2
Last reply 4/6/2014 - 1:05am

Feel so fortunate just being able to get around and have a daily routine. 

My heart goes out to everyone fighting as I know I've had it very easy compaired to most! Been able to make it to work every day only due to the people I worked with being in worse shape than me. They didn't realize how much motovation I received from them as I was supposed to be motivating them to exercise.

About 60 days ago started feeling very fatigued,  With a difficult time writing and thinking. Went on vacation for a week, thought it would help. Never got any better. Ive had to stop working and take it easy for a while.

Just wanted to know if anyone else has had the same reaction?

Presently it's "Don't give up."

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 8
Last reply 4/2/2014 - 8:53pm
Replies by: Bubbles, pigs_sty, POW, kylez, Brent Morris, Anonymous, dhrahn

I have been diagnosed with multiple brain mets and told that gamma knife is not an option. Therefore was wondering whether anyone had been a complete responder just using ipi?

Login or register to post replies.

It started with what just looked like a little pink dot on my forearm.  I ignored it.  Over 3-4 months it got bigger and puffed up.  It had no color and just looked like a weird blister.  I went to my regular MD and she said it could be a basal cell carcinoma which is no big deal because they don't metastasize and grow very gradually.  She referred me to a dermatologist to have it checked out.  I saw him a month later and he looked it over thoroughly and also thought it was nothing more than a basal cell carcinoma.  He cut it out and sent it off for a biopsy. 

Two days later I was then frantically called by his office and told I needed to get in as soon as possible, but they wouldn't tell me why. When I got there he sadly and apologetically told me that the lab results had come in and it is actually a nodular non-pigmented malignant melonoma at Clark's level IV, Breslow's thickness, at least 1.75 mm and transected at a deep margin (in situ melanoma in adnexa).  He said it is a deep tumor which is VERY serious.  I went into shock and my mind went blank.  For a few minutes I didn't hear what he was saying and just heard murmuring.  I had no idea this could possibly be a melanoma.  I have seen numerous images of them and what I had that he cut out looked nothing like one because it had no color of any kind.  If it had I would have rushed to the doctor much sooner.  He checked over all of my skin everywhere and felt all of my lymph glands and abdominal organs.  He said he could not see anything that looked like other melanomas and my lymph glands and organs felt ordinary which could be promissing. 

He has referred me to a melanoma specialist in San Francisco where he said they will inject me with blue dye and/or some kind of radiation stuff to see if the melanoma has metastisized to my lymph glands or anywhere else that will then result in surgery.  He also said that they will also likely remove more of the the area around the melanoma nodule that he may only have partically removed to hopefully get it all out.  I have to go and get blood tests done and two chest xrays today, and they are in the process of setting me up to have a PET bodyscan (hopefully this week).  I am still in shock.  I don't know what to think because I feel perfectly fine.  I am just scared $hitless (sorry for the cuss word) right now and don't know what to think.  I am just hoping this evil, destructive thing that has invaded my forearm has not moved to other parts of my body.  My love of the sun, gardening, and the beach (even though I always wear sunscreen) has turned against me.       

     

jazzygal ♥

Login or register to post replies.

Pages