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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Rosegargala's picture
Replies 22
Last reply 12/23/2014 - 7:55am

 I had a 1.3mm melanoma with no clear margins removed from my left inner thigh area  I go to the Melanoma and Breast cancer center after my dermatologist refers me to them and then find out that the nurses giving me the info are not practitioners . I can not understand how having a microscopic ,encapsulated cell in my sentinel node and the other node was clear makes me a stage 4. She told me that if it was found in any of the 2 they removed she would have to move me from a stage 1b to a stage 4 This was before the pet scan was done !!!. I had a pet scan done on Dec. 4th and it came back completely clear! I asked how I could be stage 4 when it hadn't spread to any other areas of my body or distant nodes or organs! She said it was because they found it in my sentinel node ! I had no mitotic index and no ulceration! I am scared to death and have yet to be seen by an oncologist because my nurse says that they won't treat me until after my doctor goes back in to remove 3 or 4 more nodes although my doctor told her to make the appointment for me to see oncology and he even thought I had already been seen by one! I have seen my doctor only once since my surgery and he believes I am going to be just fine and says that I am going to live a very, very long time. I feel like he tells them to do something and they ignore him and do what they want to do! The nurse also tells me that melanoma is a very slow moving cancer but from what I have read it doesn't seem to be so slow moving to me! I need answers because I am going nuts! My primary has put me on xanex because my anxiety has completely shut me down! When you hear the word cancer you have no clue how long you have left and the thought of me being put on a timeline terrifies me. I have good days where I believe in my doctor and think I AM going to pull through this but I just have this sick feeling in my stomach because the lymph node dissection could not even pin point it as melanoma the first time so they sent it to Pittsburg where they said that it is consistent with melanoma and I wonder if it was really even that! They could not say it was definite just consistent !I really need some support because I just want to feel like me again and every time I start to I dissect what the nurse has told me and I get terrified! It's hard to be strong in front of my husband and kids but I HAVE to be so they don't get scared !


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Anonymous's picture
Replies 7
Last reply 12/23/2014 - 6:23am
Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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Jsneathen21's picture
Replies 9
Last reply 12/22/2014 - 10:11pm
Replies by: Jsneathen21, Tracey R62, Anonymous, SABKLYN, JustMeInCA, MattF

I just learned today I have to have the sentinel node biopsy done... Can any body give me advice on this? As far as what are the side effects? How long is the stay? Or is it outpatient? I would like to know how it's effveted your treatment or outcome thank you so much


diagnosed with atypical spitzoid melanoma 

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Anonymous's picture
Replies 6
Last reply 12/22/2014 - 9:32pm
Replies by: Squash, Anonymous, Marianne quinn, Lil0909

I seriously made my new oncologist upset when they posted my CT results in my account before I had my appt to go over the results. I cancelled my appt based upon the stable results. I am IIIB positive ulceration, mitosis 18, one node positive. 18 mo out from dx. The new oncologist called on phone to blast me and said I would now go to chest X-rays only?! Is that the usual progression of watch and wait?

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Julie in SoCal's picture
Replies 14
Last reply 12/22/2014 - 1:00pm

Hi there friends,

It's hard to believe that I started all of this up again a year ago!  Last Christmas was such a mess! My recurrence and my mother's illness just left all of us tired and done.  So done that we skipped Christmas. 

But yesterday I had my 1 year since starting IPI scans and once again they are "perfect", "complete response" and "see you in 6 months".  I still can't quite believe it.  But my Rock Star Doc couldn't even find evidence where the intransit mets were and the biopsy sites are now soft and pliable (as opposed to hard and BB like before).  I am so grateful!

May you have a wonderful holiday season! Merry Christmas!



Here's a picture of me and my friends celebrating. I'm in the white shirt and jeans. It is a happy day! 

Oh Happy Day!

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Thankful_Heart's picture
Replies 1
Last reply 12/22/2014 - 10:39am
Replies by: Molly- CURE OM

have seen retinal vitreous Dr in home Pittsburgh   /  all they are offering is 'plaque' temporarily attached to my eyeball --  Radioactive 'seeds' =  Brachytherapy? OR certain Death  -- { all I wanted was a New pair of eyeglasses :(  } - At Least they Found this in time' -  thoughts anyone?  


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Anonymous's picture
Replies 2
Last reply 12/21/2014 - 1:45pm
Replies by: Anonymous

I'm getting small bits of information from my mother regarding my father's diagnosis.  His melanoma is now in his lungs so we are waiting on pathology so they can come up w a treatment plan.  Is there a separate support group for ano-rectal melanomas?

Thank you.


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RGal's picture
Replies 6
Last reply 12/21/2014 - 10:43am
Replies by: jenny22, Linny, Anonymous, RGal, yazziemac

I posted the other day about my father. He was first diagnosed w Anorectal  has now returned on his chest wall.  Can anyone recommend a melamoma specialist in nj. He refuses to go to ny as much as I'm trying to convince him to go to Sloan but it's unlikely 

thank you. 

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Rebecca and Bob's picture
Replies 7
Last reply 12/20/2014 - 11:55pm

My husband had scans this week. 7 years Stage IV, 5 1/2 years NED. We found out he had Stage III melanoma when our two boys were 3  and 1 years old. Then a year later it was found in his lungs and intestine.  It has not been an easy road but hopefully sending this note will give others hope.

This has been the best Christmas news for us, no gift could compare. I don't visit this site as much as I used to but the people and this site helped us so much when my husband was first diagnosed.

Wishing everyone a wonderful Holiday!




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Gene_S's picture
Replies 1
Last reply 12/20/2014 - 10:23pm
Replies by: arthurjedi007

Does anyone know how Mark is doing?  He was from Ohio near Akron and was going for a different treatment but I haven't seen a posting from him in a long time and was wondering how he is.

Judy (loving wife of Gene - Stage IV and now NED)

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

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jenny22's picture
Replies 2
Last reply 12/20/2014 - 3:47pm
Replies by: BrianP, 5dives

Hi All-I promised myself I would try and take a break and not read so much, but i am having a particulary bad afternoon today.

As I am preparing for another surgery, and then a decision for next setps I find myself reading, and reading and reading....

I am most likley going to participate in a Vaccine trial.  But its so scary and disconcerting to read from some that vaccine trials havent really wokred, nor whons any clear data....only other options are Interfeon or IPI, whcih i am not sure about.

I would welcome any comments on the above, but also had another question.....i've read varying aritcles, abstracts, publications etc about the managment and prognosis of Intransit mets...

I've actually found a few that say, in the absence of LN involvement they have a better prognosis  than overal stage IIIB, and also have read the oppositie that they are worse prognostically.So, are stage IIIBs, equal?

All the Oncologists I've seen (Sloan, NYU, Mt. Sinai, UPENN, and Rutgers) all seem failry encouraging that this is still "beatable" ....or at least that i stand a chance to be hear a good number of years down the road.

I know i am  probably no different than anyone else here, but I can't seem to get that positive attitude just yet, and  still focusing on the negative and the overhwleming fears of what lies ahead.....

I would love to hear anyones thoughts on the IIIB/intransit question as well how to get that postive "mojo" going.

Thanks in advance and best to all.






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Anonymous's picture
Replies 1
Last reply 12/20/2014 - 9:32am
Replies by: Anonymous


I am a Stage 1b patient 10.5 years post diagnosis. About 2 weeks I am having annoying migrating pain in my middle/upper back. It is less prominent in the morning, getiing worse in the evening, and is better/no pain at night.  I may have it between shoulder blades, so I want to streach, then it can move and throb in scapular area, moving to side rib. I can feel from time to time tension/spasm in the upper part. It is not stayng in one spot, but moves around, although sometimes is more prolonged close to medial border of scapular.

I am starting to freak out about it. Could such pain pattern be melanoma-related, coming from spine, bone, or lung  tumor???


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yazziemac's picture
Replies 1
Last reply 12/20/2014 - 3:04am
Replies by: MattF

Hi all

My husband, Pete, had his gamma knife radiation two days ago and is doing well.  He has been given direction from the radiation team to wean off the dexamethasone over the next couple of weeks.  He was on 12 mg/day in November, went down to 8 mg/day last week, and will cotinue to decrease the dose.  Can you give me some idea of what to expect over this process?  What is normal and what should I be concerned about?  Thanks for your expertise in advance.


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Ann from Iowa's picture
Replies 2
Last reply 12/19/2014 - 7:18pm

If you have had carpal tunnel surgery and have lymphedema in that limb what were your results as far as complications go.  I know my husband was told not to so much as have a blood pressure cuff put on that arm so am wondering on the wiseness of doing this surgery.  The orthopedic Dr. said if he doesn't he will continue to lose strength and dexterity in that hand.  He has Stage IIIB melanoma and has been NED since treatment ended at the end of 2010.  He will at the same time have surgery on that elbow to unpinch the ulnar nerve that is also causing loss of sensation in his left hand.  They said it is severe on both hands so needs the surgery done on both.  We are only concerned about the arm with lymphedema.  Any response on results or if this surgery is advised  would be very helpful.    He had 5 high dose radiation treatments to his underarm when the melanoma returned to the lymphnodes and then a year treatment with Leukine.  Seems to have done well since until this.  Thanks for your help. 

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arthurjedi007's picture
Replies 8
Last reply 12/19/2014 - 5:35pm

I certainly don't understand much of the report but the way the radiation doctor described it the one they radiated has shrank by .1 cm in one dimension and grew .4 cm in both the other dimensions. But he thinks that is probably due to the dead cells being smooshed. The other two that were not treated have pretty much disappeared. I'm really suprised about the untreated ones because one of those was just about .5 cm smaller than the one they treated and was also pushing on the dura. Sooo whohoo again for Keytruda. I got my 11th dose Tuesday with radiation the day before and after so maybe that radiation/immunotherapy synergy will happen for me someday or maybe that's why those are gone I dunno cause I got my pd1 within 26 hours of my last head and lower spine radiation too.

I think I've developed clostrophobia though. I was in the same MRI machine as August but this time I kept choking. I also couldn't stand being in that small space this time. I'm not a big guy and I just barely fit. I was also very hot and by the time it was all over my face was really red. A few times I thought I was going to suffocate in there especially with the choking. I think next time I'll request the big donut. Dunno if that will be better but maybe.

I know we all experience scanxiety and this scan almost drove me crazy. I was able to put it out of my mind pretty much until two days before. Then all the fears hit hard imagining the crazy stuff they could find.

Here's the report. I thought it was very thorough and a well done report. They plan to scan again in 3 months. Last week my Mayo doc called to see how I was doing. He had me send my 11/3 pet/ct so I'll send him this too. It really amazes me how much the Mayo docs care.

Take care all my fellow warriors.


Findings: On the prior precontrast T1 sagittal images the right paracentral posterior parietal osseous lesion measured about 2.3 cm AP x 2.8 cm craniocaudal. On that study on the postcontrast axial images the mass measured 3.6cm transverse. There is now T1 shortening within the soft tissue components of the lesion both within the cranial vault and within the scalp. This may represent products of hemorrhage in ths individual with melanoma. On the study today I measure it at about 3.2 cm craniocaudal x 2.7 cm AP on the precontrast sagittal images. This does appear to have increased in size. When I measure the transverse dimension on the postcontrast axial images I measured about 3.5cm slightly smaller. There is some susceptibility associated with the lesion. This was also present previously. On the axial images the lesion does appear more discrete than on the prior study. There is destruction of the bone with extension of the mass into the cranial vault and into the scalp.

The lesion is again seen to displace and abut the superior sagittal sinus. The sinus continues to enhance without evidence of adjacent thrombosis.

There were additional osseous lesions in the left frontal and left parietal bone on the prior study. These have improved significantly. There has been virtual resolution. No new areas of FLAIR signal alteration are seen within the calvarium. The cerebellar tonsils are normal in position. The corpus callosum is intact. No discrete area of abnormal signal enhancement is seen in the brain parenchyma. The right calvarial lesion which extends into the cranial vault certainly may involve the dura. The dural venous sinuses enhance.

The ventricles are normal in size. Signal voids are present in the vessels.


1 Some increase in the craniocaudal and AP dimensions of the mass as measured on the T1 sagittal images and compared to the prior study from 8/21/2014. Some T1 shortening within the soft tissue components which may represent products of hemorrhage in this individual with melanoma. Of note, the transverse dimensions decreased slightly and the lesion appears slightly more circumscribed on the transaxial images. Continued follow-up is recommended.

2. Virtual resolution of the smaller calvarial lesions seen previously.

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