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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audgator's picture
Replies 6
Last reply 3/6/2013 - 10:12pm

First let me say I know I am talking about very small lesions and some readers will be dealing with much scarier issues, but I also know they will not begrudge me my present apprehension. Two of the things I love about Moffitt are the friendly optimism of my oncologist and the fact she almost always gives me the results of my scans the same day. This time I scheduled my appointments over 2 days with the CT & MRI yesterday afternoon and consultation and infusion today. Due to backups in Radiology my MRI was not finished until 7 PM last night. When I saw the doc this morning she did not have the report yet but had looked at the pix. She was pleased saying that my mets continue to shrink. She also points out that she is looking at the images in B&W on a 15" monitor and the radiologists have bigger & sharper screens. The trial coordinator brought in the report Just before we left but I did not read it until we got home.  So these are the sizes in mm with previous sizes in ( ): 4x1 (3x1);  5x3 (4x1);  5x3 (5x5); 5x4 (4x4).  OK so 2 are down but 2 are up which she did not mention.  We did talk about a splenic lesion that continues to grow and is at 2.1 cm now.  She does not think that will affect my trial eligibility and we will continue to watch it with the possibility of surgery if all goes well with the others.

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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!

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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!

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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!

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dellriol's picture
Replies 8
Last reply 3/15/2013 - 2:21pm

Just over a year ago I lost the use of the entire right side of my body when a brain met I didn't know I had started bleeding.  After craniotomy, scans showed more tumors: one more brain and 5 or six lung tumors.  I spent a month in rehab learning to walk again, then started on zelboraf for the tumors. I started taking an arthritis class at the YMCA in case the medicine started causing joint pain.  I've been hospitalized twice more, for liver problems from meds, and for a transient ocular ischemia. We are now a year later,and my tumors have shrunk but are still there.  I've stayed out of the hospital for 6 months.  My YMCA class morphed into lap swimming. So for my 1 year anniversary, I swam a full mile.  It was amazing to me to think that in one year I've accomplished that much, from being right side paralyzed to a one mile swim.  LET ME TELL YOU, GOD IS GREAT!

This ain't no hill for a stepper.

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dian in spokane's picture
Replies 4
Last reply 3/6/2013 - 11:04am

I'm sure plenty of you still remember Vern and Nancy Dutton. Nancy was on interferon the same time as AmyB and King and me. And she and Vern drove their motor home to texas for the big MPIP Bash there.

Keep her in your thoughts and prayers.

http://www.caringbridge.org/visit/nancydutton

 

dian in spokane

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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.

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Muru's picture
Replies 7
Last reply 5/12/2013 - 8:03am
Replies by: Muru, Anonymous, Tim--MRF

Hi All,

 

I had mucosal melanoma in Tongue in 2007 and my 2/3 of the tongue has been removed. I was under constant observation. I was cancer free for 5.5 years. Now melanoma has recurred again in my larynx area. As per PET CT it has not spread to any other part of the body. Now my entire Voice Box has been removed on Feb 6th 2013. I got discharged from the hospital on Feb 24th and I am still in recovery mode.

No Molecular studies like (BRAF mutation) are done so far. I am trying to get this done in a couple of weeks. Meanwhile how do I make sure that this won't come again. Please share your views/Ideas.

Do We have any good drugs available to fight against Melanoma.

 

Thanks,

Muru

India 

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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.

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kpcollins31's picture
Replies 35
Last reply 4/29/2013 - 11:16am

Let me start by saying that I am stage 3c, 39 years old, and undergoing no treatment currently. I had surgery in Sep 2012 to remove a single infected lymph node in my upper left arm... they took a few sentinal nodes as well and they were all clear. I am seeing a melanoma specialist (Dr. John Stewart at Wake Forest Baptist Health) who does not really believe in scans, but he did plan to do another PET scan at the 1 year mark.

So my question is, how do you know if you have a problem? I feel great - I have started eating better and lost some weight. I hit the gym hard several times a week and feel stronger than I have in years. Does some physical symptom typically manifest itself if you become stage 4?  How many people cruise along thinking everything is great and then have some kind of routine scan to find out otherwise?   

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meeshka6059's picture
Replies 10
Last reply 3/12/2013 - 2:35pm
Replies by: susanr, meeshka6059, POW

After only a short time on Zel my father's tumors in his body grew. He is on a very low dose as he doesn't tolerate Z well. His last brain scan showed new tumors and we are meeting today with his neurological radiologist to discuss options, if any, today. (Dad is 82, diagnosed stage IV in October.) I expect to hear some talk about gamma knife today. Wondering about anyone's experience with this, effectiveness, side effects, etc. He is continuing on the Z for now until the brain mets are dealt with. Then they will do another body scan to see if it's working. Dad continues to be weak and tired, losing weight, and his mental capacity is dwindling. He has no pain or nausea. We are giving him medical marijuana tincure for seizures and that seems to be doing the trick. I continue to count every small blessing.

Thank you. I'm sending you all love and light. ~Michelle

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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,

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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,

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Colleen66's picture
Replies 5
Last reply 3/7/2013 - 9:43pm

I have lymphedema in my left leg.  I do the self massage and wear a stocking during the day.  Two things I have learned in the last 3 months.  I can only sleep on my right side or back, this leaves the left open to drain during the night.  This was hard for me cuz I always slept on my left side so I piled firm pillows at my back so I wouldn't roll over in my sleep.  Second thing I learned is don't buy a drugstore stocking.  It needs to fit correctly and have the right compression, I use a 30. 

I missed my opportunity to get to the specialist in a timely manner because of my interferon treatments.   I'm probably not alone in that category but I did learn the message technique from a YouTube video and figured the rest out as I went.

Anyone else have any tips?

Colleen 

Live!

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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

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