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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susan-scalp MM 2014's picture
Replies 4
Last reply 12/18/2014 - 8:35pm
Replies by: Janner, susan-scalp MM 2014, Anonymous

Hi everyone.  I am new here.  Diagnosed with Stage 1B Malignant Melanoma on top of scalp in June this year. Due to complications I cannot have surgery under general anesthesia. My question is can an ultrasound detect an enlarged lymph node I may have in my neck and if so can it be biopsied accurately and treated without surgery?

Susan

It is well with my soul!

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Anonymous's picture
Replies 3
Last reply 12/18/2014 - 5:51pm
Jsneathen21's picture
Replies 6
Last reply 12/18/2014 - 10:37am
Replies by: Janner, Jsneathen21, Anonymous

I am 26 years old it took approximately 2weeks for the dermatologist to tell me my results of this even... They sent it off for second opinion at a university even.. To tell me today I have this? And that it's rare in my age group and at all!! Does any one know anything about this rare type? Please let me know thank you!

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Lauri England's picture
Replies 5
Last reply 12/18/2014 - 9:03am
Replies by: _Paul_, BrianP, jbronicki, BP, SABKLYN

I have been NED for 4 and a half years. On Thanksgiving I noticed a bebe size lump on left side of my neck.   I gave it a week and it doubled in size.  I went to my family doctor and she refered me right on to my oncologist.  I had a CT scan December 9th 2014 and got results back December 16th.  I have a 4 inch mass in the upper part of my left lung and a 10mm size mass right behind my liver.  Doctor right now is not sure of this is spread of Melanoma or another type of cancer.  Next week I will be going in for PET scan and diopsy to confirm.  Not sure what is going to happen next.  Very scared once again.  I beat this once and I feel in my heart I can do it again...

Don't sweat the small stuff. There are bigger fish to fry!

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Anonymous's picture
Anonymous
Replies 3
Last reply 12/18/2014 - 8:25am
Replies by: 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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ashlee12's picture
Replies 1
Last reply 12/18/2014 - 2:18am
Replies by: Janner

Hey everyone 

 

I've posted on here anot being diagnosed with melanoma about 2 months ago... I'm 22 and it wasn't even stage 0 yet which is great but I do have some questions?

 

now so far I have had 4 atypical moles removed one severe 2 mildly and 1 moderate. Now I know I have a greater risk of developing another melanoma which scares me... And now I think all my miles are weird hahha and I've kinda become obsessed with them 

 

Now some questions I have 

how likely is it that if I'm going to regular check ups that the doctor will miss something and I'll get a higher stage melanoma?

 

now I have read people get melanoma removed and they are okay and it comes back and then they have stage 4 melanoma .. How does that happen? Is it doctors fault ? 

 

 

And and last question is they removed my melanoma with surgery .. I got local anesthetic and she went in with some small pen like thing and as she was going smoke was coming from where she was working.. Is this a good way to remove moles???

 

 

 

thanks!

 

 

 

 

 

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ChrisB's picture
Replies 6
Last reply 12/18/2014 - 12:27am

Today marks the 20th anniversary of my diagnoses with melanoma.

 

Although I don't come to the boards often these days, my patnet is available for anyone that would like to know my melanoma history.

 

I have been fortunate in that I have been able to live a somewhat normal life (with the exceptions of doctor/scan appointments - etc) and continue to work full time.

 

While I know that this might not be the average life of a stage IV patient I’m hoping this post gives at least a glimmer of hopefulness to others in similar circumstances.

 

My Sincere Thank You to all of you that continue to frequent this board and offer comfort, support and hope to the newly diagnosed and others unselfishly.

 

My heart goes out to all of you, patients and caregivers alike.

 

Chris

Stage IIb December 8, 1994

Stage IV February 19, 2003

Manageable Disease since October 1, 2004

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Teej's picture
Replies 4
Last reply 12/18/2014 - 12:27am
Replies by: Teej, Gene_S, O_O

Hi everyone,

My name is TJ and I'm 28 and was recently diagnosed with Stage Ib malignant melanoma on the scalp, which is typically found in men with an average age of around 60. This website has been incredibly helpful for me hearing the experiences of others. Are there any other folks out there who were dianosed with a primary on their scalp at such a young age? I would love to hear any experiences with scalp melanoma that you may have.

Thanks!

TJ

Teej

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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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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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Ashley's picture
Replies 5
Last reply 12/17/2014 - 4:10pm
Replies by: sweetaugust, BrianP, Anonymous

My dad is on a trial with PD-1 and his first set of scans showed 20% decrease in tumors.  We just got the second set of scans and it showed 9.5% more shrinkage from baseline. Could those who had positive responses to Pd-1 share how quickly it worked?  Is this bad that second scans didn't have as good of a response?

Thanks,

Ashley

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Anonymous's picture
Anonymous
Replies 7
Last reply 12/17/2014 - 11:21am

Hello all,

There's loads of great posts on this forum about treatments, but I didn't find anything about the period when switching from one treatment to the other.

My wife is Stage IV, diagnosed in June after several weeks of fever & lesions under her skin appearing, and after many blood tests they ultimately discivered metastatic melanoma after a CT scan. All major symptons disappeared within the first weeks of being on the Dabrafenib/Trametinib combo and her tumors started shrinking on the following CT scans and ultimately she become PET negative on October.

However, on the next scan in December tumor growth was observed, not only in the main sites (liver, spleen) but now also in her bones in several places. We're now onto immune therapy.

Since it may takes weeks, if not months, for that therapy to work, we're in a free fall at the moment. Her condition is worsening and we feel new nodes under her skin. The fevers and night sweats are also back.

So I have two questions:

- Is there any data on how fast the immune therapy typically needs before it kicks in? I know averages are not very useful here, but maybe there is % after x weeks, % after x+2 treatments, etc information.

- How did you feel in this period in between treatments? Did you feel worse, did you get additional treatments, were you hospitalized? How did you cope with it mentally.

For my wife it's very tough as we believed we were on a path to some type of recovery, but now not only is the tumor growth back, so are the symptoms, so it's like starting all over again which is something she had blocked out as a possibility.

Thanks for sharing your "free fall" experiences, and we hope that the parachute will open soon!

Thanks, Rick

(PS. I have posted here several times before but wanted this post to be anynymous for personal reasons, hope you understand)

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RJoeyB's picture
Replies 13
Last reply 12/17/2014 - 8:01am

Hello friends,

I'll have to fill in the details later, but for those of you who know my recent background dealing with ups and downs from radiation necrosis over the past six months as a result of CyberKnife from almost two years ago, l had a significant decline in left side motor control deficits and impact of Decadron steroid side effects over the past week.  After much deliberation, we decided to move forward with a second craniotomy which was moved up from tomorrow to today for simple scheduling reasons.  Most of my team of doctors still believe this is necrosis and not recurrent tumor, although there is a possibility it's both, but surgery will get both, regardless.  We're hopeful that the physical deficits that have affected the use of my left arm, hand, leg, and foot, will not be permanent and that the powerful effects of prolonged (6+ months) Decadron use will resolve soon as I'm able to taper down after surgery.

I will post more for the group later as there are some lessons to be learned, but wanted to ask you all for your thoughts and prayers today as we await an actual start time and go over this not completely unexpected bump in the road.

Best, Joe

 

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Anonymous's picture
Anonymous
Replies 4
Last reply 12/17/2014 - 5:03am
Replies by: Anonymous, Janner, arthurjedi007, AnitaLoree

My father was diagnosed with anal melanoma this past spring.  He had the tumor removed and had a clear PET scan in June.  He just had another PET scan last week and it's showing nodules on his chest wall and some spots on his lungs.  The thoracic surgeon wants to go in, collapse his lung to biopsy the nodules.  I want to get another opinion as I feel like the oncologist made some poor decisions by not insisting on further treatment even after the initial scans came back clear knowing how quickly this spreads.   Also, why he didn't have him seen sooner than 6 mts for a follow up scan seems basically neglible.  My parents aren't ones to self advocate and go with whatever the doctor says but I am very concerned and would like another opinion if nothing else.  Can anyone shed any light on this situation and help me navigate this world of melanoma.  Thank you.  

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Maureen038's picture
Replies 14
Last reply 12/16/2014 - 10:39pm

There are many very courageous  warriors out there that have signed up for trials with any of the big pharmaceutical companies. The patient has to sign a mountain load of paperwork and give more than 20 vials of blood sometimes and weathered many side effects to try to save his or her life. My husband had hemoyltic anemia after his third dose of ipi/nivolumbab .There are many very dedicated and compassionate  doctors who stand along side of the patient and do everything possible like my husband's physician, Dr. Kirkwood. I think he just assumed BMS would do the right thing. The official word is NO. My husband can't stay on the trial of ipi/nivo because it's working SO well that 8 lung nodules and 5 lymph nodes don't show any activity on the PET scan and they continue to shrink and/ or stabilize. Unfortunately, he has to have VATS   Surgery for the one lung nodule on Dec 22. Please say prayers for my unbelievably brave husband who has worked full time most of the time while going through HD interferon, TIL therapy at NIH and now this trial. If all goes well with the surgery, he will only have 2 spots that showed very little activity.

Wouldn't it make sense that BMS would want this tissue to explore why it didn't work on this one nodule? Couldn't this information possibly help other patients? After my husband has been on nivolumbab over a year, wouldn't they want to have the chance to "cure" a patient? No!! They make billions of dollars while the patient has virtually no power at all.  After surgery, my husband will have to switch to Mereck's Keytruda and hopefully he won't have any new side effects.

Who is looking out for the patients at Big Pharma? This rant is dedicated to Nick Auden and the countless other vibrant lives that have been lost because saving lives is not the number one concern to Big Pharma., making money is. Shame on you  Big Pharma because if your husband or wife had this disease you would NOT play by the rules you make!!!!

Maureen

 

 

s

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