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
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.

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

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 7
Last reply 4/1/2014 - 4:45pm
Replies by: Anonymous, kpcollins31, DUSTILANE, Ashley

Does anyone take aspirin to try to keep the cancer from returning?

 

There's been a bit written, and some from cancer doctors.

Login or register to post replies.

DUSTILANE's picture
Replies 0

My husband had a turmor removed from under his arm, 11/15/13 the size of an ostrich egg.  The biopsy said it was metasized cancer of an unknown primary.  We set up an appointment to go to MD Anderson.  His first appointment wa 01/08/14.  At that time, the tumor had come back.  In fact, there were now 3 of them that combined was bigger than the 1st one.  MD Anderson tested the slides of the biopsy and it came back as Metastic Melanoma.  The tumor got so big and my husband go ill so the tumors could not be removed.  They did radiation on the tumors and he is waiting for his 4th Ippy treatment.  We have an appointment the last of May with the surgeon to pssibly remove th turmors under his arm.  My question, since tumors reappeared after the first surgery, what are the changes of more appearing if they remove these turmors?

If more tumors are going to appear, we just don't see the benefit of putting him thru an extremely long surgery.  The surgeon said the surgery could take 6 - 8 hours.  My husband has heart problems that put him at risk every time he is put under. 

Any thoughts and comments would be greatly appreciated.

 

 

Login or register to post replies.

Leslie'sHusband's picture
Replies 4
Last reply 4/4/2014 - 1:16pm

Our consult @ Duke yesterday left us with mixed feelings.  We were a bit disappointed that the slides of the tumor and lymph node had not been reviewed by the pathology labs before our visit yesterday.  On the upside of that, we are happy that they are not just taking the other lab's word for things and are looking at things for themselves before making any diagnosis and plan of attack. 

 I was also a little disappointed that my main question about the minimally invasive lymph node dissection was not answered until we got the consent form for the surgery to take home.  I asked "Are you seeing any improvements in recovery times and fewer complications with the minimal invasive surgery?"  The answer was essentially "it's still a trial, that's why we're offering it."  The consent form, however, states that wound complications are about 18% with the laproscopic surgery, and about 65% with the conventional surgery.  Those numbers may be off a little, I don't have the form in front of me now.  They gave us the consent form so that we would have it ready in the event that their lab confirmed the presence of melanoma in the lymph node.  "We see more melanoma in a week than most of the local doctors see in a year, lets wait and see if our labs confirm the lymph node diagnosis before we schedule surgery."

Les is committed to having the laproscopic lymph node removal done at Duke if their lab confirms melanoma in the SLN.  Treatment afterwards is still up in the air...

 

Login or register to post replies.

My Dr office has LDH at 100 - 250 as normal. Mine has been around 190 for as long as I know until this month.

On 3/3 it was 259. Dr thought it was the T10 vertebrae and the radiation would cause it to drop but it hasn't.

On 3/31 it is 396.

My Dr mentioned it was still high but when I left I got the report and I'm like what the heck. That's a huge jump. I also know I've been feeling a bit lousy for over a month.

Any advice what I should have my Dr do to find out what is going on? Currently he's not planning on doing anything except continuing to try to get me into the Merck PD1 EAP.

Any advice on anything I can do about it?

 

 

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 0

Hi Everyone,

 

I will be in chat tonight at 8:30 tonight.  Hang tough.

Love and Light

Carole K

Login or register to post replies.

jswce77's picture
Replies 7
Last reply 4/8/2014 - 10:08am
Replies by: tickyloo, jazzygal, Janner, dellriol, jswce77, Anonymous

My husband was recently diagnosed with an amelanotic T1b melanoma on his face. He is having it excised as well as a SLNB this week. Our doctor is hesitant to perform any scans. From what I've read, melanoma is unpredictable. We have young children and I want to error on the side of caution. Should I push for a scan of some sort? Is it typical for a T1b patient to get a scan or chest x-ray? Any advice would be greatly appreciated. Thank you. 

Login or register to post replies.

Anonymous's picture
Replies 2
Last reply 3/31/2014 - 4:42pm
Replies by: laura b, Janner

My dad (69) had a mole removed from his scalp in September 2011 which was staged at IIC. After experiencing some chest pain two weeks ago, we learned after a PET and biopsy that the melanoma is back and contained to his lungs. The oncologist has suggested two treatment options - Yervoy and Vemurafanib, depending on BRAF testing. The doctor expected the results back on Friday, but when we called to find out, we learned Medicare is making us wait 14 days to submit another lab test, and then it will take another 3-5 days for results.

It makes me feel so helpless. We know this is obviously aggressive, and it seems like days/weeks really matter. Does anyone know of a way to appeal to get it faster? 

We are currently seeking treatment at the West Clinic in Memphis, but honestly, the more I think about how few resources they gave us, I would like to move on. It looks like MD Anderson offers many trials for melanoma. Does anyone else have thoughts of where we should look in our area? I feel limited in my ability to research since I have no test results to research and I know the genetic testing is so important. I also worry that they are only testing for BRAF, not other mutations, and will we have to wait weeks for that??

I really appreciate any help that can be offered. This site has been extremely helpful, and has offered us hope when Dad's physician did not. Thank you all so much for that.

 

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 12
Last reply 4/2/2014 - 12:35pm
Replies by: Anonymous, sweetaugust, Gene_S, Brent Morris, POW

Hi, all-

My mom was diagnosed with stage 3 melanoma mid-February when she was in for something unrelated. She had "superficial" bladder cancer with a 1% reoccurrence rate and they found a 5mm mass in her lower abdomen. Turns out it was a cluster of nodes gone crazy and it needed to be removed immediately. 5 years ago she had a small piece of melanoma that was removed from her skin with clear margains. They did did a due test and removed her sentinel node and found that the melanoma had not entered her nodes. Well, they were wrong. There is apparently a 1-2% error rate in that test, and after they removed it the melanoma decided to go to the next node where it made its home for 5 years. 

Fast forward. They removed both clusters of nodes (18 in total), and 7 of them had cancer in them. It was wrapped around an artery. The nodes were stuck to lining of her stomach (from the outside), and they also found a small lining of cancer near her ovary on the other side, as well as two small masses on that side. The PET scan (a so-called 97-98% accurate) didn't show this.

All VISIBLE cancer has been removed. Because it travelled beyond the nodes she qualifies for ipi, which she starts this coming Friday. She has also completely changed her diet...raw foods, heavy alkaline producing foods --she's a champ!

We have taken the news of no visible cancer as a positive one, as well as the ipi treatment. But since my mom is asking not to know any details from doctor, we are kind of in the dark on where everything stands. She's asked the doctor to provide her only with positive, so at her last appointment he said that people - some - are being cured by ipi, and that technically she doesn't have any in her (other than microscopic...how do they know this?).

 

Also I'm a bit scared because she has a sporadic light cough over the past year or so. Perhaps the PET scan also didn't show that? Are there other tests that are more accurate??

I guess I'm just wondering what all of this means. Like, it seems like good news...but is it? 

Thanks :/

Login or register to post replies.

Pages