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
Replies 3
Last reply 1/4/2019 - 1:35am
Replies by: Anonymous, aldrichdesigner, cjm22

Hello. My mother just started the Keytruda treatement, and she has severe backpain (hips area), she's very weak and has no appetite. She had these symptoms before Keytruda, although they didn't bother her that much. Her relults showed liver mets, but I'm scared that it can be bone metastasis.

She also has recurrent pain, that also quickly passes in the areas of the scars from her lymph node surgery, neck and liver.

My mother is taking 400mg ibuprofen every 4 hours, it works just fine and she doesn't feel any pain, although sometimes she has to take it every 3 hours, its effect seems to not last long.

I'd be very grateful if someone who experienced similar situation would share it and I would know what to expect. Thank you.

 

 

Login or register to post replies.

SteveDB's picture
Replies 11
Last reply 1/5/2019 - 6:45pm

Good evening all.

It's been since last April, and I'm here with a question....

I'm coming up on 15 years, and as of 2014, the protocols were---

diagnostic scans every 3 months, under the 2 year mark (0 to 2 years since last occurrence/recurrence-- O/R)

scans every 6 months 2 years to 5 years. (2 yrs to 5 years since last O/R)

Scans every year, 5 years to 10 years. (5 to 10 years since last O/R)

After 10 years, you're considered cured, and it's scans once every 5 years.

Well..... I'm at my first 5 year, following the 10 years NED.

Is there an updated protocol for diagnostics? I've googled this, but am not able to find ANYTHING about it. Everything I've found is about new, or recent diagnosis, and care for the various stages.

My wife is just as wearied with all the $$ we've spent on care/diagnostics, so has asked me to ask, before I go fork out a mess-load of $$ on a PET scan.

 

Thank you.

SteveDB.

btw---- 15 years, February 10th. :-)

Point being--- there is Hope!

One heartbeat at a time.

Login or register to post replies.

Hi all, my story is in my profile, but in short, though they were diagnosed and treated a year apart, I had thyroid cancer AND melanoma at the same time.  What's more surprising than that (to me at least), is that I have never tanned or sunbathed, and am young (36 at the time).  My pathology report was: .9mm, non-ulcerated, Clark's level III/IV, mitotic rate 2.

My melanoma was pink, and as a result was missed the first time I had it checked out.

The staging of T1b remained so after my WLE and SNB came back clear (T1bN0M0).

This all happened just two months ago, basically a year to the date of my thyoidectomy. Sheesh.  I have two young children, and this hasn't been easy emotionally and it has been tough for us all.

I try to not think about it honestly, though someone recently asked if I was waiting for the other shoe to drop (on a bad day, yes).

My surgeon was concerned about the mitotic rate and had me see an oncologist to establish yearly visits.  She told me to be on the lookout for bumps in the hotpsot (torso).

I'd love to hear from others in the PNW -- there is no support that I can find for this part of the country.

And how worrisome is the mitotic rate of 2?  I have read didfferent things online.

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 5
Last reply 1/4/2019 - 10:57pm
Replies by: Anonymous, lkb

I’m 17 years old and I am southeast asian and live in southeast asia. I have darkening on the corner of my toenail for maybe 4-6 months (or maybe more because I didn’t keep track of it and thought it was not concerning. However, lately I’m curious and pretty concerned.) This is what it looks like: https://imgur.com/a/qkvxiPu

My toenail (the one besides the pinky) has dark corner and it’s kinda stripe-like and the cuticle is kinda dark too. I am pretty worried after I read about melanoma. I tried cutting the nail and there’s nothing under the nail and it’s only dark on my nail (as far as I know). I also tried using the flashlight of my phone (so I can see through it) because I thought phone flashlights can make our veins visible so it would make sense if it can show any dark spots under your nail too. Anyways, I did that and put my flashlight under my toe so It would make the nail and the toe itself somewhat see through and it doesn’t show anything and I don’t see any dark spots or stripes. My question is, does the melanoma dark stripe show up on the skin/flesh under your nail or the actual nail itself? And is it even possible for this to still be melanoma after the whole flashlight thing? I’m planning to see a dermatologist but now I’m wondering if this is still concerning.

Login or register to post replies.

kb9718's picture
Replies 3
Last reply 1/2/2019 - 11:00pm
Replies by: ed williams, Bubbles

Hi everyone, 

I have gotten some more information and I am being told I'm in stage 3 after having my right lymph nodes have melanoma in them. My PET scan showed some abormal acitivty in my left shoulder now so I will have a minor surgery regarding that tommorow and then a few more scans and then if all goes well they said I can join a clinical trial my doctor said I will have a spot if I get everything done in time. The drugs being given to me are Dabrafenib anad Trametinib and its a form of targetted therapy. This is because of my BRAFT test and I tested postive for BRAFT not entierly sure what that test exactly means. I was wondering if anyone had any experience with these drugs, I am suppose to take both pills each day for a year and I am curious about the side effects.Im still in school so Im hoping I will be okay to finish this year. I feel scared but excited for the ball to get moving and hopeful for the future.

Thanks for taking the time to read this, 
KB

Login or register to post replies.

Edwin's picture
Replies 6
Last reply 1/3/2019 - 11:56pm
Replies by: lkb, Edwin, Bubbles, Coragirl, GeoTony

I had my 14th PET scan on December 27.  This morning I met with my oncologist Dr Anu Gaba and received my 64th infusion of Opdivo.  A 1 centimeter tumor under my left jaw is stable after receiving radiation in May and June.

my PET scans:

August 14, 2014
December 15, 2014

March 11, 2015
August 10, 2015 ( melanoma in a rib )
November 5, 2015

March 1, 2016 ( melanoma in ribs, spine, hips, femurs and right shoulder )
August 23, 2016 ( significant improvement after 4 ipi + nivo treatments )
December 12, 2016

March 20, 2017
August 10, 2017
December 18, 2017

April 17, 2018 ( cancer under my left jaw )
September 5, 2018
December 27, 2018 ( still cancer under my left jaw )

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 5
Last reply 1/2/2019 - 8:36pm
Replies by: Bubbles, MarkR, marta010, Anonymous

I was diagnosed with Stage 4  Metastatic Melonoma in Dec. 2015/Jan. 2016.  They surgically removed stuff on top of my skin (in bikini area) but it had spread too far, thus the Stage 4 diagnosis.  I did Tafinlar/Mekinist starting in May 2016 until Oct. 2017 when the tumors (2, now 3) were not breaking up at all, etc.  Went on Opdivo, twice a month.  Started Yervoy with Opdivo in Feb. 2018 as once again the tumors started growing.  Got thru 3 double infusions then my liver levels went to hell.  Diagnosed as auto-immune hepatitis.  No more infusions and weekly bloodwork plus steroids to stop inflammation and to keep eye on liver as failure was very possible - they then tried Mycophenolate, a liver transplant drug for patients whose body starts rejecting the new liver.  It tricked my system into thinking I had a new liver and to "please accept it" (my words).  It worked, my levels finally came down after 2 months.  This was in November.

So, now doc says he will not put infusions into me - I am too likely to trigger organ failure with the drugs. I get that.  So we are just waiting - for what?  I am nervous as I have daily bad joint pain, nausea and have since cancer started - they have not abated.  Joint pain is worse, I take opoids and anti-nausea, blood pressure and anxiety drugs.  Without these - well, I cannot imagine how bad life would be.  He says he's looking for a new/different treatment but nothing yet.  My November petscan showed a tiny bit of growth, but he was not concerned.  He is a great doctor I think,, but I am wondering what could possibly be next?  Is chemo the logical next step?  Are there other pills people take for Stage 4?  My appt. is next week so any good conversation points would be nice.  

Login or register to post replies.

Tracyyy's picture
Replies 3
Last reply 1/2/2019 - 10:32pm
Replies by: lkb, marta010, Tracyyy

I know that MRI is better for what is going on in the brain, but is there anyone whose brain mets have been detected after a PET/CT scan? I am worried because had a clear PET/CT 1 month ago and lately been having headache which goes away with Tylenol, then comes up again. Brain MRI scheduled for next week. Have been on Keytruda for a year. Thanks and Happy New Year, may it bring more NED results!

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 3
Last reply 1/2/2019 - 12:33pm
Replies by: RichInLife2, Linny, Anonymous

I had a irregular mole that had a black raised center and spreading lighter brown area that short of peeled on my lower leg for about 7 years. I finally got it removed to be tested on the 20th. The doctor sent it out for testing. The nurse called me on the 28th and told me, unfortunately, it was a melanoma. I'm not sure how serious this is. I'm confused to have been told over the phone, and I felt like I could not ask questions because it was the nurse who called. She did tell me a surgeon would be calling me to schedule another surgery to go deeper to get the rest of it. Not even sure what that means. She also said they were discussing sending me to an oncologist, also confusing to me. I'm scared and confused because I made the mistake of trying to do research because cancer is a scary word, but the way its being handled seems weird. Seems as if the doctor is not too concerned since he had the nurse call and is only talking with a general surgeon about sending me to an oncologist. She also said they are unsure if it has spread and what stage it is. How in the world will we know if I do not see a specialist. Am I freaking out for nothing? I have an appointment tomorrow to get the stitches removed from the first surgery. I'm going to try to get more answers. I'm very confused and scared. Not sure what to expect. I live in a small town, not sure about my doctors experience or knowledge. Any thoughts?

Login or register to post replies.

Bubbles's picture
Replies 26
Last reply 1/13/2019 - 7:41am

Happy New Year!!!!

Though my dear peeps and ratties here are well acquainted with my story, in the effort to provide hope to new members....

I was diagnosed with Stage 3b melanoma in 2003, progressing to Stage 4 with brain and lung mets in 2010. I was saved with SRS to the brain met, surgical removal of the right upper lobe of my lung, and 2 1/2 years of an Opdivo trial back when it was called MDX-1106.  I have lived with melanoma for 16 years and remained NED for melanoma more than 8.  Yes!  Melanoma treatments have come a long way, baby!!!  Here's hoping for even more effective treatments in the coming year.

As for my latest crazy, I am DONE with my adjuvant CAPOX treatment for ex-goblet cell carcinoma of the appendix!  (Thank God and Greyhound they're gone!!!!)  I am finally feeling better.  For those interested, here's the latest installment in that tale:

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2019/01/happy-new-year-and-capox-as-adjuvant.html  

I am ever so grateful for the support that each of you have so generously provided over these past 4 months.  It has meant more to me and mine than you will ever know.

May the coming year bring much love, peace, and health to each of you.  Love, les

Login or register to post replies.

Replies by: stevek1959x, dessie

Hi everyone,

On 5th Nov 2018, I had an inguinal lymph node dissection. I was healing well, until 3 weeks later i started to notice significant swelling & redness of my thigh, mild fever, fatigue, and hardness in the skin around the wound. It turns out it was infected, and I was re-hospitalized, given lots of antibiotics through an IV, and the wound re-opened and a wound vac was installed.  2 weeks later, I had the drain and wound vac removed, and given the green light to start being more mobile. 

It is now over 8 weeks since I had the surgery, and 3 weeks since the drain & wound vac have been removed. I am almost fully healed up, and working on getting full range of motion back. I’ve been walking and cycling, and feel fine but still have a heaviness and swelling in my thigh, which gets worse throughout the day. I’m unsure if this is still the swelling going down after the infection, or whether it could be Lymphedema? I thought lymphadema was most common in the lower part of the legs, and I don’t have any swelling there.

I wondered if any of you have any experience or advice on this, as I’m struggling to find any relevant info online. Is this something I should inform my doctor of?

Thanks again

Clare

Login or register to post replies.

Jydnew's picture
Replies 4
Last reply 1/2/2019 - 10:43pm
Replies by: lkb, BrianP, dessie, Johnjk04

Hi all,

I used to browse this page constantly for information and support after my husband was diagnosed at stage 3a - a week after we returned from our honeymoon in January 2002.  We will celebrate 17 years of marriage this weekend and celebrate 17 years NED in March, which is the anniversary of the surgery removing all his lymph nodes.

I came back tonight because I was triggered by the recent death of a woman in our community who was diagnosed at stage 3 and had a recurrence diagnosed at stage 4, 16 years later.  It's so close to my heart to think of her and her family's suffering, knowing that my family and husband could endure the same fate.

For 17 years, we've gone from worrying about a recurrence to barely giving my husband's diagnosis a thought.  We've been busy raising 2 beautiful girls, traveling, enjoying our land and recreation and suffering the losses (some very deep) that come with living.  But melanoma has taken a back seat - like hardly even in the same vehicle back seat.  It gives me such pain to come back to the boards and witness the devastation that melanoma brings, knowing that it strikes so randomly and without warning.  However, after reading many posts, it seems like my husband went through melanoma in the dark ages compared with some of the therapies that are being used today.

May 2018 bring you all peace and health.

Wendy

Login or register to post replies.

MelanomaMike's picture
Replies 5
Last reply 1/2/2019 - 10:50pm

Hi guys, happy new year "again", damn time goes by fast doesnt it? Haha..
I have a question to folks who have had lung surgery, as you know i did also on Dec 17th using the VAT technic (removing Right Lower Lobe) and im recently noticing the incision more towards my back (the other is under my right tit/chest) seems to bulge when i cough? It doesnt hurt at all but feels weird! Is this normal? The other incision (only have 2 small ones, 3rd is chest tube) doesnt do this?? Is this called a Lung Hernia? Did my "inner" stiches may have come undone? They sealed both incisions with tape not stitches or staples and both are totaly healed. Now this only happens when i cough not to breath, inhale or exhale..i see my surgeon again late this month (already saw him for post op) i wanna say this is new cause its a wierd sensation, it wasnt doing this before...please reply if ya know whats up!! Yixe! Lol..hope your all doing well, were gettin threw this!...Mike

Im Melanoma and my host is Mike..

www.covvha.net

Login or register to post replies.

Nick C's picture
Replies 5
Last reply 1/2/2019 - 10:55pm
Replies by: lkb, Nick C, Bubbles, ed williams

Hey guys...

A little update. While doing the pre-trial physical, I mentioned that I occasionally have a "runny nose". MRI was mentioned and it was decided to have since it had been over a year. Had the MRI on the 21st. Within 2 hours after the MRI, I get a call from my OC that the trial will be postponed because found a lesion on my brain. They got me quickly to see the radialogistic last Friday. He showed me where it was. Although they are not positive that it not melanoma, there is a very good chance that it is. Options are biopsy, physically remove it or radiation. I opted for the radiation. I will have another MRI on Friday (more detail imaging) and then do the mapping. This will be a SRR radiation procedure..."one and done". Hopefully, the postponement will be short. My CT scans still show progression. It now actually shows that my largest met pushing up against my stomach which is causing some pain if I eat too much. Most of mets are just under the skin with 2 of protruding noticibly. This will be my fifth different treatment and third clincal trial (third time is a charm, right?).

On a better note, wishing all of you a very Happy New Year! 

Nick


Login or register to post replies.

jordieg's picture
Replies 3
Last reply 1/3/2019 - 8:18am
Replies by: Bubbles, betsyl, BrianP

I've had these two spots on the bottom of my foot for a while now, and never thought anything of them. I've never had my body checked my a dermatologist, even though I have a lot of freckles, which is SO dumb. But I'm 20, so I wasn't thinking of it.

I moved to Japan for a semester to study, and had a mild breakdown about the moles being cancerous when checking online, which my parents told me was ridiculous. I sent pictures to my friends, who assured me they looked fine - but the spots look JUST like acral lentiginous melanoma. So, after that I tried to forget about it. My parents said we would check when I got home.

I ended up going to a dermatologist in Japan, who said the marks on my foot were probably fine (Japan has a very low rate of aural lentiginous melanoma, mind you) but removed a mole on my back that came back as negative.
 I think.

Then, I started to have these very strange chest pains. I went to the doctor in Japan about them multiple times, had cardiac and bloodwork done, and nothing was explained. I’m now having really severe bone pain in my arm and chest and legs. I had x-rays done that show nothing, but that doesn’t mean much. Then, I noticed the lymph nodes under my armpit are swollen, and that I have two big lymph node-y lumps in my groin. I can feel them in my tummy, too, basically my whole body. I’m also noticing a lot of new freckles and spots, including inside my mouth and in places where the sun doesn’t hit on my legs and shoulders. I know this sounds crazy, but I had my host mom and an ER doctor feel the lymph nodes as well, and they agreed they felt them and it was odd. 

My parents and friends encouraged me to stop going to the doctor, but I’m freaking out. They think I’m crazy, but I’m really certain this is late-stage. 



My question is, I guess, has anyone ever caught melanoma THIS late before? Everyone I read about had a mole removed, and then it came back later to be stage IV in just the brain or a few lymph nodes. I’ve never even had anything removed. I know it’s not curable, but is there anything doctors can do if it’s this widespread? At all? I would be cool with just living even a few more months - I know Bob Marley lived 8 months after being diagnosed with a lot of mets. Does anyone know about any cancers being caught this late in a young person? I can’t find anything, except about lung cancer.



I’m leaving Japan in a week, but I’m going to see a doctor on Friday to get my lymph nodes biopsied, which feels a little pointless due to the timing. My parents are assuring me it’s fine, which makes me feel guilty because this obviously won’t be. I'm scared, and I'm also just in a lot of physical pain. I don't know how I'm not dead yet when all of my lymph nodes hurt this bad. 

Login or register to post replies.

Pages