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
Anonymous's picture
Anonymous
Replies 1
Last reply 3/5/2013 - 5:27pm
Replies by: Janner

Hi everyone. I am looking for some first hand information and advice about my fathers battle with melanoma. Im an only child and he is divorced so I am the primary care giver and want as much information to help him as possible. If you guys could offer any insight it would be greatly appreciated! Here is his backstory... My father has had several small melanomas removed throughout his life most likely due to being a rancher and oil man and out in the sun way too much. However in September of 2011 a small black and ulcerated melanoma with a thickness between 2 and 4 millimeters that was ulcerated and spread into the top two layers of tissue but not the muscle. He had a PET scan that was suprisngly clear and they did a wide excision with clear margins leaving a large dent and a 5 inch scar. He went for his regular check ups and everything was ok. Then this week March 4 2013 he called me and said his back hurt where his surgery site was and asked me to look at it. Its in a spot you cannot see yourself. What I saw was very alarming. At the site of the wide excision is one lump the size of a ping pong ball and another above it but attached to it the size of a quarter. They both protrude from the skin and are red and the largest one is ulcerated. He says it is very painful and he cannot lay on it or stretch his arms and pull on that area.I made an appt with the dermatologist right away and he will be seen this afternoon. This seems to have happened very quickly yet they are so big. This disease is nasty and quick I guess. Has anyone had a larger reoccurence at the orginal site and does this most likely mean we will find it spread to other places. Another thing to note is his health is not good in the first place and it makes it hard to notice things that could be caused by a spread of the meanoma to an organ. He has severe COPD and developing early memory problems which have been worse the last several months. He does have a family history of alzheimers and is about to turn 69. Any help or insight is appreciated. I know we will not know anything for certain until the dr sees him and we get more tests, but does this sounds pretty bad? It sure looks awful and Im scared but able to face the harsh reality that we could be in for a fight here. Thanks again!

Login or register to post replies.

pds's picture
Replies 8
Last reply 3/5/2013 - 2:55pm
Replies by: Mandi0280, Ali, ncdaniel, Anonymous, Colleen66, Becky, Janner

Hi everyone!  I am 32 and just recently had my 6 mo full body check and had a "clean" check and this was also my 5 year mark from my first non-invasive Melanoma.  About a month later a lesion appeared on my ear and after pathology returned it showed it was another melanoma.  So I had surgery to remove the lesion and they also performed a sentinel node biopsy.  The path on the sx came back and showed clean margins on the Melanoma, but not very big.  Also, one of my lymph nodes came back positive.  I have another surgery lined up in about 1 1/2 weeks to go in and remove a larger section on the ear and to remove all the lymph nodes from that side of my neck.  I am due back to the oncologist's office later this week to discuss the staging of the cancer and future treatment.  I am guessing from what I have read on all the legit websites that they will stage it Stage III-a.  At my prior appt w/ the oncologist he briefly mentione Interferon treatment.  Just curious as to how all of you younger patients out there responded to it?  Side effects?  I am very active and healthy, so I am hoping that will be to some benefit.  I also have long, thick hair and the vain side of me is curious to how much of it I will lose??  Fertility?  Did anyone freeze eggs?  How long was the I.V. part of it?  Thanks!  I am sure I will have many questions in the future, but these will get me started =)

Thank you!

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 0

Hi everyone. I am looking for some first hand information and advice about my fathers battle with melanoma. Im an only child and he is divorced so I am the primary care giver and want as much information to help him as possible. If you guys could offer any insight it would be greatly appreciated! Here is his backstory... My father has had several small melanomas removed throughout his life most likely due to being a rancher and oil man and out in the sun way too much. However in September of 2011 a small black and ulcerated melanoma with a thickness between 2 and 4 millimeters that was ulcerated and spread into the top two layers of tissue but not the muscle. He had a PET scan that was suprisngly clear and they did a wide excision with clear margins leaving a large dent and a 5 inch scar. He went for his regular check ups and everything was ok. Then this week March 4 2013 he called me and said his back hurt where his surgery site was and asked me to look at it. Its in a spot you cannot see yourself. What I saw was very alarming. At the site of the wide excision is one lump the size of a ping pong ball and another above it but attached to it the size of a quarter. They both protrude from the skin and are red and the largest one is ulcerated. He says it is very painful and he cannot lay on it or stretch his arms and pull on that area.I made an appt with the dermatologist right away and he will be seen this afternoon. This seems to have happened very quickly yet they are so big. This disease is nasty and quick I guess. Has anyone had a larger reoccurence at the orginal site and does this most likely mean we will find it spread to other places. Another thing to note is his health is not good in the first place and it makes it hard to notice things that could be caused by a spread of the meanoma to an organ. He has severe COPD and developing early memory problems which have been worse the last several months. He does have a family history of alzheimers and is about to turn 69. Any help or insight is appreciated. I know we will not know anything for certain until the dr sees him and we get more tests, but does this sounds pretty bad? It sure looks awful and Im scared but able to face the harsh reality that we could be in for a fight here. Thanks again!

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 0

Hi everyone. I am looking for some first hand information and advice about my fathers battle with melanoma. Im an only child and he is divorced so I am the primary care giver and want as much information to help him as possible. If you guys could offer any insight it would be greatly appreciated! Here is his backstory... My father has had several small melanomas removed throughout his life most likely due to being a rancher and oil man and out in the sun way too much. However in September of 2011 a small black and ulcerated melanoma with a thickness between 2 and 4 millimeters that was ulcerated and spread into the top two layers of tissue but not the muscle. He had a PET scan that was suprisngly clear and they did a wide excision with clear margins leaving a large dent and a 5 inch scar. He went for his regular check ups and everything was ok. Then this week March 4 2013 he called me and said his back hurt where his surgery site was and asked me to look at it. Its in a spot you cannot see yourself. What I saw was very alarming. At the site of the wide excision is one lump the size of a ping pong ball and another above it but attached to it the size of a quarter. They both protrude from the skin and are red and the largest one is ulcerated. He says it is very painful and he cannot lay on it or stretch his arms and pull on that area.I made an appt with the dermatologist right away and he will be seen this afternoon. This seems to have happened very quickly yet they are so big. This disease is nasty and quick I guess. Has anyone had a larger reoccurence at the orginal site and does this most likely mean we will find it spread to other places. Another thing to note is his health is not good in the first place and it makes it hard to notice things that could be caused by a spread of the meanoma to an organ. He has severe COPD and developing early memory problems which have been worse the last several months. He does have a family history of alzheimers and is about to turn 69. Any help or insight is appreciated. I know we will not know anything for certain until the dr sees him and we get more tests, but does this sounds pretty bad? It sure looks awful and Im scared but able to face the harsh reality that we could be in for a fight here. Thanks again!

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 7
Last reply 3/5/2013 - 11:34am

My aunt just received a Stage 4 Melanoma diagnosis after having a biopsy at the dermatologist. She had a shave biopsy that was 4.1mm all Melanoma. The mitotic index was 8. Does anyone know what the mitotic index of 8 means? We understand that is the rate at which the cells are dividing, but what is bad and what is good?

Login or register to post replies.

sjl's picture
Replies 1
Last reply 3/5/2013 - 10:58am
Replies by: G-Samsa

My husband received his second round of yervoy ten days ago after a new lump popped up under the skin of his neck and another one began to grow agian.  Since then, the two tumors have changed shape, size, gotten harder, softer, etc and I understand that all of this could be because of the yervoy and that it will take some time to know if it is working.  A couple days ago he got up and said his jaw had hurt during the night.  Yesterday I noticed new growth along the jaw line. I could see it acrosss the room.  It's hard as a rock and last night he couldn't sleep because of the jaw pain.  I'm worried sick.  I know it's melanoma growing again and I'm afraid it will take off like it did last summer when it grew everyday until things reached gigantic proportions before beginning treatment.  You can check my profile if you need more information.  We are waiting for a call from his doctor.  He is braf and cKit negatice, NRAS positive but ineligible for clinical trials because of a secondary primary lung cancer that was treated in October.  Carbo/Taxol failed and I don't know what else can be done for him.  He had to go the chemo route initially because things were growing so fast and the only other treatment mentioned at that time was IL2, which the doctor said he couldn't handle.  Maybe he can now, I don't know.  Any ideas on other options and what we should be asking the doctor?  If this takes off like it did last summer we won't have much time to get things taken care of.

Login or register to post replies.

audgator's picture
Replies 2
Last reply 3/4/2013 - 9:44pm
Replies by: Bubbles

Bubbles et al:  3 months ago I posted about my itching being worse.  Here I am 2 days from my next quarterly treatment and I am worse again.  I'm always somewhat itchy but it seems I get worse just before the next infusion. Interesting.     Dan

Login or register to post replies.

I found this while reading throuh Angeles Clinic  (Los Angeles, CA) latest info.  I don't know anything more about it but I am sure if it is something that can help someone you can find out.heart

BRAF/MEK -   BRIM 7: BRAF and MEK Inhibition with Vemurafenib and GDC-0973 in Patients with BRAF V600 Mutated Advanced Melanoma * available for patients progressed on Vemurafeib or Vemurafenib naieve

Life is too short to be anything but happy. Falling down is a part of life, getting back up is living.

Login or register to post replies.

joy_'s picture
Replies 17
Last reply 3/4/2013 - 4:29pm

Hi everyone.  First of all, I want to say that I am really grateful for the information that everyone shares here.  It has been very beneficial...  We found out a couple of weeks ago that mel has returned after a 2 1/2 year hiatus.  My husband has tumors on his lung, liver, adrenal gland, etc.  We are waiting for the BRAF test to come back, and in the meantime I am trying to figure out what options are out there.  After talking to his doctor, it sounds like that only choices available here are either a clinical trial of Vemurafenib followed by IPI (if BRAF pos) OR choose between Ipi and IL2.

We are good with the trial if his BRAF test comes back positive but trying to have our game on to know what to do if it isn't because IL2 sounds like a horrible choice for him.  Does anyone have any suggestions based on your experience or about other trials that are being done around the country?  Is there anything else I can be looking into?  It seems like you pretty much have to have a failed attempt with IL2 or Ipi to move on to something else?  I am trying to educate myself  so any feedback would be much appreciated.

Thank you.

Login or register to post replies.

buffcody's picture
Replies 4
Last reply 3/4/2013 - 3:02pm
Replies by: JerryfromFauq, awillett1991, Anonymous, POW

On this and another forum, people talk about getting tested not only for BRAF mutations but C-Kit and RAS as well.  Maybe others.  I know that my insurance allowed me to be tested for BRAF and this was done twice using older and current techniques.  No mutation. Both tests paid for by my insurance.  I've mentioned being tested for C-Kit but my oncologist seems to duck the question.  I have an unknown primary, though it is assumed, I suppose because of likelihood rather than anything strictly scientific, that it was originally skin.  Would it benefit future treatment to know about the other two mutations listed or any others?  Is there any insurance coverage for other tests besides BRAF? I would not hesitate to pay for them out of pocket is they could tell me something significant for further treatment?

Login or register to post replies.

Janet Lee's picture
Replies 5
Last reply 3/4/2013 - 2:22pm
Replies by: Tim--MRF, awillett1991, POW

I've seen some posts here that people have been treated with Zelboraf even if they didn't have the V600e mutation (they had V600K or V600-other-than E). Could you share with me how you got that treatment? My husband tested positive for BRAF, but he is V600R and the insurance company denied him the treatment. It was denied twice, and a third appeal has been sent. I've tried Genentech's various avenues for assistance, but even they won't help. It seems if your household earns > $100,000 per year you are not worthy of help.

Thanks.

Janet

Login or register to post replies.

Christinalynn4's picture
Replies 5
Last reply 3/4/2013 - 12:33pm
Replies by: Christinalynn4, JC

I was diagnosed with Melanoma on Jan 28th 2013 I had a mole on the left lower leg that had been there my whole life.. It had not changed but i did cut it with a razor shaving. I was nervous to have it removed in dec so i waited another month..it did not hurt at all when I had the shave biopsy and could have prob cut it off my self..it came back melanoma ..long story shorter i had surgery feb 15th the surgeon thought i would need a skin graft w a wound vac but he was able to pull the skin and stitch it closed..I thought it was good i have stretchy skin. I had slab to the left groin also. 2lymph nodes were taken and thank god came back negative and w the wle all the margins were clean no cancer..I ended up with a seroma to the groin and increased pain then increased pain to lower leg w redness and drainage. The groin has eased up and I opted to let the seroma hopefully dissolve on its own. Im really concerned about the lower incision. I started Keflex thurs but called the dr sat because the wound looked worse and started taking Bactrim twice a day. The dr does not seem concerned it is a five inch incision and they say there is a chance it will open! I have been out of work almost three weeks now and am a little terrified to go back thurs if it opens i will prob need a wound vac and another month off of work.. DOES ANYONE OUT THERE HAVE ANY ADVICE?? I have been wrapping the leg with four ace wraps as recommended by the dr from the toes to the groin and taking it off at night. 17days since surgery! The most pain I have is in the thigh....I don't know if I tore the muscle..I ve tried creams Lidoderm patch and ice nothing seems to be working. If anyone can help i would really appreciate it,

Login or register to post replies.

I was diagnosed with Melanoma on Jan 28th 2013 I had a mole on the left lower leg that had been there my whole life.. It had not changed but i did cut it with a razor shaving. I was nervous to have it removed in dec so i waited another month..it did not hurt at all when I had the shave biopsy and could have prob cut it off my self..it came back melanoma ..long story shorter i had surgery feb 15th the surgeon thought i would need a skin graft w a wound vac but he was able to pull the skin and stitch it closed..I thought it was good i have stretchy skin. I had slab to the left groin also. 2lymph nodes were taken and thank god came back negative and w the wle all the margins were clean no cancer..I ended up with a seroma to the groin and increased pain then increased pain to lower leg w redness and drainage. The groin has eased up and I opted to let the seroma hopefully dissolve on its own. Im really concerned about the lower incision. I started Keflex thurs but called the dr sat because the wound looked worse and started taking Bactrim twice a day. The dr does not seem concerned it is a five inch incision and they say there is a chance it will open! I have been out of work almost three weeks now and am a little terrified to go back thurs if it opens i will prob need a wound vac and another month off of work.. DOES ANYONE OUT THERE HAVE ANY ADVICE?? I have been wrapping the leg with four ace wraps as recommended by the dr from the toes to the groin and taking it off at night. 17days since surgery! The most pain I have is in the thigh....I don't know if I tore the muscle..I ve tried creams Lidoderm patch and ice nothing seems to be working. If anyone can help i would really appreciate it,

Login or register to post replies.

eric w's picture
Replies 2
Last reply 3/4/2013 - 8:58am
Replies by: eric w, POW

Hi all,

My wife had melanoma removed from her arm 2 years ago. It was ulcerated. It was removed with a node ...clean margins and node.. Done at UCLA.. And we have been going every 3 months for follow up..including pet/ct scans... Multple millimeter nodules were noted in an April 2012 pet scan.. Told to watch them..August 2012 ct should nodules stable.. February ct showed 5 of the nodules had grown from April.. Did a needle biopsy of a nodule a couple weeks ago and found to be melanoma... So we are going this Friday to meet with our onc.. The following week we are going to MD Anderson in Houston to meet with Dr. Kim for a second opinion on treatments... Then go from there.. We are still waiting for the mutation test results... My question on this would a molecular report be valuable in the beginning part of treatment... And for that matter for the whole process.. Trying to get all the tools I can to help my beautiful wife through this. Thanks

Login or register to post replies.

Hello - my name is Bret and I'm a 42 year old father in Minnesota who has been battling Stage 4 melanoma for four years (started in leg, went to groin, then pelvis three times).  After going a full year without a tumor, I got scan results Thursday showing two new tumors in my pelvis.  I've had 8 surgeries, Interferon, chemo, ipi, oncovex, and radiation.  Running low on options now.  B-RAF negative and C-KIT negative.

Doctor is recommending I get into either a PD-1 study or a TIL study. The PD-1 study using MK-3475 is available at Mayo Clinic and I think I can get in.  I have an appointment tomorrow to sign consent and ensure that I qualify.

My questions - first, what has been your experience with PD-1 studies?  Second, we know very little about TIL and would appreciate any advice or input.  Finally, I have never tried IL-2, is that a good option or am I better off with a clinical study?  Also, does anyone know anything about the sequencing of these options?  Could I get IL-2 before or after one of these trials?

Thanks in advance for any advice.

Login or register to post replies.

Pages