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

On 9-4-14 I had a melanoma removed from my scalp.  The initial biopsy suggested its thickness was .49mm.  However the path report showed that parts of it were 7mm thick.  The margins were clear.  The location of the sentinel nodes made removal impossible w/o major surgery, so the node removal attempt was aborted.  Subsequent PET CT scans showed no evidence that the cancer had spread to nodes or organs.  At this time, my doctor has not seen BRAF reports from the path study, so he does no know whether I am a candidate for certain clinical trials.  If I do not find a suitable clinical trial, he will most likely recommend year-long interferon treatments, although acknowledging that it is questionable whether benefits outweigh the probable significant loss in quality of life during treatment.  I'm also considering radiation therapy at the removal site and neck area where sentinel nodes are located, but this therapy is on hold because starting it would disquallify me for clinical trials. 

Any thoughts??

g_booker

Login or register to post replies.

Ashley's picture
Replies 8
Last reply 10/20/2014 - 3:03pm

Hi,

My dad has stage 4, and just started on a combo trial of nivolumab and lirilumab.  Since starting his LDH has been dropping... I don't want to get my hopes up, but at the start it was 400, after the 1st dose it went to 397, then 348, and today 260 (normal range 110-210).  I'm hoping this is a good thing, but just looking for some feedback :-)

 

Thanks,

Ashley

Login or register to post replies.

TinaB's picture
Replies 5
Last reply 10/6/2014 - 7:58pm
Replies by: Bubbles, BrianP, RJoeyB, TinaB

Hi

A year ago I returned home from a 10 day business trip to find the "depression" symptoms my husband (we were only married for 8 months) was displaying had worsened. I started a concerted fight to get someone look at it seriously. He was very apathetic, so I had to cajole, connive and lie to get him to a doctor 3 times in 8 days. Finally I had him admitted to a psychiatric clinic and the psychiatrist decided on an MRI - Thank God!. She told me not to worry, there is a 1% chance of it showing anything, but that was the moment I knew - he has a brain tumor. I was right...(sometimes it is awful to be right!). He had a 5.3X5.2 tumor in his right frontal lobe with severe swelling of the brain. During the two days we had to wait to see a neurosurgeon he deteriorated rapidly - paralysis, confusion and just total incomprehension. He became a little boy.

On the 23rd of October the surgeon removed the tumor. Then two weeks of silence. I kept on asking about the histology and just got silence back. Finally the doctor saw us to remove the staples from the craniotomy. But his first words to my husband was: "Take off your shirt." I knew. Melanoma.

He had already set up an appointment with a radiation oncologist for us for the next day. This is why he waited so long to give us the histology results. There was no time to look for a second opinion or to do more research. I was panicky and hubby still apathetic. The radiation oncologist (telephonically) informed my husband (who couldn't care) that he is changing the radiation treatment from SRS to 3D conformal radiation therapy. I couldn't get answers since I am not the patient. He had 5 sessions of radiation - how much I don't know - because I am not the patient.

I started hunting for a medical oncologist and finally found one through my husband's nefrologist. He is one of only 10 in our country! It seems patients are by default sent to radiation oncologists since there are so few physician-oncologists. Never mind a melanoma specialist. (Our country has the second highest incidence of melanoma after Australia). This doctor is great! Yet he only offered watch and wait - it would have been our preference too. In the mean time he has had MRIs every three months and is due for a PET scan in November. So far No Evidence of Disease! Thank you, thank you, thank you.

How is my husband doing? He sleeps most of the time, he is sometimes confused, he has developed epilepsy and is on two different medications, he has stage B chronic kidney disease, he has short term memory problems, there is something wrong with the way he walks, he has very little interest in anything outside the home. The way things look now, he will never work again. He even forgets to water the plants.

The man I married only 21 months ago is gone. Gone is the highly intelligent, very musical Maths genius with an acute social awareness. In his place I have a little boy eager to see me, who pines for me when I'm at work. I get nervous when we are in social situations, since he is bound to say or do something completely inappropriate. Some days are better than others. I still love him with all my heart and will always take care of him!

Currently I just feel overwhelmed and alone. I stopped talking about all of this to friends and family - thinking they must feel I'm always complaining. Financially it is a struggle, we both have college aged kids from previous marriages and just my income. Luckily I have very good medical aid (medical insurance), but I still have to contend with ever increasing cost of living and the realities of living in this country.

I am reliving every moment of one year ago. I am double guessing myself. Most of all, I think I should have stopped the radiation therapy - I suspect that is the reason for his current state, and why his confusion is growing. Suddenly I cannot stop crying...

I am grateful that he is with me and "healthy", I am sad that at 52 he is suddenly a very old man. I am truly glad I knew him before he got ill. I am all in all happy to have him around and to care for him. I just really wish I can have him back the way he was...

Now I'll dry my tears and cook a nutritional supper, while doing some work in between, because I fell behind today what with all the feeling sorry for myself!

 

 

 

Login or register to post replies.

G-Samsa's picture
Replies 2
Last reply 10/6/2014 - 3:12pm
Replies by: kylez, BrianP

Recap:  My last treatment (Nivo/IPI) was withheld based on scans which indicated some growing unknown in my lungs...I have melanoma there (and pretty much everywhere else), but it has been stable for about a year and a half.  There were a number of possibilities -- with the most likely being a  cumulative reaction to the drugs (but the rearing head of melanoma not ruled out)

Resolve

 

Seems after an interim scan the docs are confident I have been reacting to the NIvo.  This seems to have been bolstered by the inflammation of my joints which was becoming extreme by the time I stumbled into the office for the verdict/checkup.  The reaction in the lungs seems to have hit its high water mark already and the joint inflammation is being dealt first with Aleve and if necessary steroids.  ( whether I get my final treatment, scheduled in  six weeks is up in the air). 

If there is something to be learned by the community here, it may be that pneumonitis and joint inflammation are beginning to be seen as "classic" symptoms of Nivo taken over time.  I was told of a number of instances, including someone who had never reacted to the drugs until the last treatment, and then had a fairly extreme reaction requiring hospitalization.   There's a lot of experience in the facility where I am treated so this is good to know about .... I've heard again and again that the Nivo is Ipi's benign cousin.... but it's  a powerful drug nonetheless. 

 

 

Login or register to post replies.

Patina's picture
Replies 1
Last reply 10/7/2014 - 1:55pm
Replies by: Anonymous

Very off topic...

I saw a spammy post again tonight and wanted to ask if anyone knows if there is a process to report them in order to have the posts taken down and the user account deleted? If there isn't a process for this feel free to send me an email and I'll at least I'll report them to Google.

I reported the site gojivitabr.com referenced in the post from yesterday to Google via Webmaster Tools. - I do online marketing for businesses and report links/site as spammy when I find them...

Here is the post I mentioned: "Because I was just too tired"

 

Login or register to post replies.

Anonymous's picture
Replies 2
Last reply 10/10/2014 - 6:46pm
Replies by: Anonymous

Nodular 3.5mm primary melenoma  on leg18 months ago with a positive lymph node and 1 local in transit met.  I was staged at 3c.  Was on the ipi vs interferon trial and randomized into the 3mg ipi arm.  Completed all 8 doses of ipi in July and just found 3 small subq mets 2 inches from primary site.  A fine needle biopsy done and positive for melanoma.  Ct scans were just done last week as well and all clean.  My melanoma specialist oncologist wants to do an MRI of brain and full body PET scan just to make sure no further disease.  Assuming all clear he wants to have surgery to remove the 3 mets and then interferon as an adjuvant therapy.  

My doc says I am still stage 3c.  What other options do I have?  Can I leave the mets and do some type of systemic treatment?  Can I surgically remove the mets and then do some type of adjuvant treatment besides interferon?  Any clinical trials available that I should look into?  Thank you in advance for any suggestions.

Login or register to post replies.

Jewel's picture
Replies 3
Last reply 10/6/2014 - 2:49pm
Replies by: Teochasse, Jewel

Hello,

I was hoping to be writing on here that we just celebrated 3 yrs NED from a stage 3c diagnoses. Instead we got the news that my husband has a node showing up in his pelvis. 2011 CLND in groin 3/19 nodes positive, original primary on leg. Go for PET tomorrow. Depending on what PET shows our oncologist suggest surgery. What should we be planning after? Radiation was a thought. If the surgery goes well he will be back to NED status which doesn't offer much in ways of options. Will take any and all thoughts. Thank you

Jewel

Login or register to post replies.

cbe's picture
Replies 5
Last reply 10/7/2014 - 1:16pm
Replies by: cbe, sweetaugust, RJoeyB, Bubbles

My 48 year old husband has stage IV melanoma (N-RAS mutation), currently in several lymph nodes and spots on liver. After 2 rounds of ippy (stopped because of elevated liver functions), he is now on Merck anti-PD 1 (Keytruda). Despite being told that there are few side effects, he's feeling quite sick --tired, lack of appetite, low grade fever, persistent non-productive cough. (He had no side effects from ippy) He's on 20mg of prednizone--he's tried going off it but then he's completely wiped out. Also being treated for Thrush which helps somewhat.  CT scan last week showed liver spots still there, possibly bigger, but no spread to lungs or abdomen. Doctor considering adding MEK inhibitor.

How long before we should expect to see effects from the anti-PD 1? Has anyone had these kind of side effects from anti-PD 1? We can't tell if its from that, the steroid, or the cancer... Anyone have experience adding a MEK inhibitor for N-RAS mutated melanoma?

Login or register to post replies.

katieherwig's picture
Replies 8
Last reply 10/7/2014 - 12:02pm

I was diagnosed six years ago with Stage 3a while 22 weeks pregnant. I went through one year of interferon and had been cancer free. On July 28, 2014 I was diagosed with Stage 4. I have melanoma in my liver, lungs, bone, and had in my ovaries. I had a intense surgery on August 8, 2014 that removed my ovaries. 

On August 20, 2014 I started my tafinlar treatment. On November 14, I go back to MD Anderson to have scans and possibly start my Yervoy treatment. 

i have a great husband and sweet 6 year old daughter. I am still able to work full time and really feel pretty good. Sometimes I wonder if I am in denial or just handleing this well. To be honest I'm not sure which one it is. I do have a strong faith in God. But I'm still scared and sad. 

Login or register to post replies.

Rocco's picture
Replies 2
Last reply 10/5/2014 - 11:37am
Replies by: Bubbles, Janner

A dear friend of mine just notifed me her Derm gave her a dx of melanoma in situ.  Very concerned as her brother just recently passed away from mel.  I'm not familiar with in situ and what all tests they'll run on her, etc  Her path info is as follows:

"Malignant melanoma, predominantly insitu, superficial spreading type.  Dept of invasion is 0.29mm, Clark's level II.  Melanoma is in a horizontal growth phase."

Her next step is surgery - assuming to get clear margins, etc..  She has an upcoming consult with Dr. Amod Sarnaik, surgical Onc at Moffit in Tampa. 

 Can anyone chime in on what she should request given the family history and/or what she should expect.  Also any input on Moffit in Tampa and/or Dr. Sarnaik would be appreciated.

Thanks -

Rocco

 

Luke 1:37

Login or register to post replies.

Rocco's picture
Replies 5
Last reply 10/5/2014 - 11:08am

Thanks for the good thoughts and vibes last week.  Amazing how quickly the fear of the unknown came upon me while waiting for the all clear...

Last week I posted that my PCP had suggested I get a CT the neck to look at what appeared to be a small lump under my jaw/neck area.  So went to DFCI in Boston and had my Onc order it up.  Had the scan - it showed nothing (YEAH!), followed it with an ultrasound to be sure - still nothing.  Current thought it is a submadibular gland issue (could be blocked) so I'm off to an ENT specialist to figure it out.  Bottom-line - no mel....<insert deep cleansing breath here>. 

-Rocco, Stage IV since 2005, Ipi responder, NED since 2009

Luke 1:37

Login or register to post replies.

cruzinsusan's picture
Replies 2
Last reply 10/6/2014 - 9:14am
Replies by: mary1233, Becky

Sorry to be on here!!  Just dianosed wtih very rare and very grim Oral mucosal melanoma!!

At stage one in sit tu and all pet scan are clear.  There is not much reasearch on this rare meanoma so I am out here looking for anything that can give me more hope!!

Thanks Suz

Login or register to post replies.

ecc26's picture
Replies 9
Last reply 10/6/2014 - 6:52pm

I feel like a yoyo these days. I finally got the path report (last week) from the mass they removed from my brain about 2 weeks ago: all radiation necrosis- no live cells. 

In some ways that's great- better than having active disease! But now they can't seem to decide what to do with me. Pre-surgery the plan was to give me about 3 weeks to heal after the surgery then bring me back for gamma knife to the surgical area and a few other spots that were seen on the MRI in non surgically accessible areas. That was fine, but with the path report now they're concerned that perhaps that's not the best course of action given that what they took out was radiation necrosis. If the other spots are as well then more radiation is NOT good. I feel like I'm being tugged back and forth between some who still think I should get a gamma knife and those who don't. To be honest, not that gamma knife is such a big deal, but if I didn't have to do it, I'd be perfectly happy. 

At the moment the plan is for me to go back to the hospital where the surgery was done (Roswell Park in Buffalo, NY) on Monday for a follow up MRI. If things look at least stable, no gamma knife. If there's growth or anything new- the conversation starts all over again. I'm really hoping things are stable and I (and  my husband) can get a break from all travel and doctors stuff. I'm still not cleared to drive myself after the surgery (even though I never had any symptoms of any kind pre or post surgery and have been back to work full time this past week). Having another gamma knife would delay that clearance for sure. 

I'm happily off all medications except the anti-seizure, which I suspect will continue for at least a few more weeks.

On the bright side- I got my first dose of the now FDA approved PD-1 here locally yesterday! So excited to be back on that and to not have to drive over 6 hrs to get it! Even with the surgery I'm really not even off schedule with it (maybe a couple of days as I used to get them on Mondays and this one was on a Friday). Super excited I can get it at home now. Yesterday was dose number 6!

Wishing everyone out there all the best as you do battle with this horrible disease. Hold on to hope and remind yourself that it's becoming more managable every day- I am now almost 3 years since progressing to stage IV, and 2 years and 3 months since my first brain mets. I've been through every FDA approved therapy (currently on the Merk PD-1) had whole brain radiation, 2 (possibly soon to be 3) rounds of gamma knife, and a craniotomy for brain mets and I'm still here! You can do this, it may seem like an impossibility, but you can do this! If I can, you can

 

-Eva

Login or register to post replies.

BrianP's picture
Replies 17
Last reply 10/7/2014 - 9:43pm

Just got my third 12 week scan in a row with the two key phases "Grossly stable" and "no new metastasis".  Not sure why they use the term "grossly stable".  I think "awesomely stable" is a better description.

For a quick recap, I started last August in a Nivo/Ipi/Nivo sequential trial with 4 cm and 3 cm nodes around the liver area.  After 12 weeks of Nivo the two nodes were about 40% smaller.  After the next 12 weeks of Ipi nodes were mostly unchanged but had numerous new mets in my lungs.  Ever since returning to nivo the lung mets have completely resolved and the two original nodes are holding steady.   

The durability reports of the anti-PD1 drugs gives me hope that I can stay this way for quite some time.  Not sure what will be next come August when the trial is scheduled to end.  I listen with great interest to those on the tip of the spear like Celeste and Laurie to see what they are hearing on that front.  Right now I'm just counting my blessings and so thankful for these new wonderful drug options.

Brian

Login or register to post replies.

Pages