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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B_Hutz's picture
Replies 14
Last reply 7/19/2016 - 12:07am
Replies by: Beehappy, B_Hutz, MoiraM, Anonymous, Ed Williams

I am a 43-year-old male that was first diagnosed with melanoma in 2009.  I had an in situ melanoma (.7mm Breslow thickness) removed via WLE. I was followed by my dermatologist and oncologist for the last 6 years.  In June of last year, my dermatologist felt a swollen lymph node under my left arm and I had an axillary dissection in August.  1 node of 16 tested positive for metastatic melanoma and was staged at 3B.  I developed lymphedema shortly after surgery and I have been working with garments, a pump, and OT twice a week to try to keep it between stage 2 and 3.  

 

I started 10mg/kg Ipilimumab infusions in early November.  The last infusion I received was on New Year's Eve, which was my 3rd.  In early January, I was hospitalized with hypophysitis and treated via intravenous high dose steroids.  I was sent home on hydrocortisone, but was hospitalized again when the pituitary headaches returned.  I was given more high dose steroids (120mg) and have been on them trying to taper basically since January 5th.  Each time I reached the end of the taper and transitioned to hydrocortisone, I had major issues.  

 

Over the past 6 months, I have been fighting the ipi side effects and also the side effects of all the meds that they are giving me to treat the ipi side effects.  I have been diagnosed with Ipilimumab-induced hypophysitis (swollen pituitary gland), Prednisone-induced pre-diabetes, Ipilimumab-induced hepatitis, Prednisone-induced hypothyroidism, Prednisone-induced hypomania, and my former 20/20 vision is now a mess from the HD prednisone.  My endocrine system is non-functional, but I hope that it regains some function when I can finally be done with the steroids.  

 

My last MRI showed that my hypophysitis had resolved.  That is good!  My liver has been the last to cooperate.  At the end of all but my last my tapers, I have been hospitalized or placed back on high dose steroids to try to get my counts to drop to normal levels.  I finally was able to get off of the prednisone on 6/5/16.  I am now taking 20mg of hydrocortisone in the AM and 10 in the PM.  In addition I am taking Cellcept to try to keep my liver enzymes down.  

 

I have had a ton of CT’s and MRI’s over the last 6 months.  All have been checking on areas where I have had all the side effects to try to find the problems.  They have all been clear of mets. That is something to be very happy about, and I am.  I will not receive any more ipi infusions due to the toxicity that occurred.  If melanoma returns, my oncologist will look at a different treatment option.

 

My major issues right now are the edema, swelling, pain, and weight gain that no one can seem to help me with.  I went from running 5 full marathons and 6 half marathons 2 years ago, to gaining 60 lbs of swelling in 2 months.  I am eating clean and doing my best to move with difficulty, but I am not able to get the miserable swelling to decrease.  My oncologist blames everything on the prednisone.  I was just diagnosed with 3 superficial blood clots in my right leg that I am treating with Lovenox injections in my stomach twice a day for 3 months.  I was also diagnosed with Meralgia Paraesthetica that makes it tough to sleep.  

 

Has anyone out there experienced some similar side effects of ipi?  If so, I would love to hear from you.  I still believe the ipi is very active in my body, as it has shown with my liver and causing all of this swelling.  I know that side effects can continue to show up for a year after my last treatment, but this one thing after another is getting very hard to handle.

 

My thoughts and prayers are with all of you!!

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keepthefaith11's picture
Replies 26
Last reply 7/6/2016 - 8:22pm

So really bad news. My had had the MRI today even though they could not complete it due to him not cooperating. They were however able to see he has 13, yes, 13 brain mets of varying sizes...

Please, someone give me some guidance..
WHAT do we do now...

Annie

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Anonymous's picture
Replies 4
Last reply 7/6/2016 - 4:36pm

So I am 3 years out from my original stage 1-2 diagnosis with surgery and negative lymph nodes and there is now a slightly tender round lump near my incision site, about 1/2 inch to the right and just under the skin.  I can feel it as a round bump, about half the size of a marble, a little painful to press on.  Can melanoma present UNDER the skin surface?  With no pigment?  Just a lump?  My original was superficial spreading on the surface, the multicolored flat type of melanoma.  Just got to wondering if the tender painful lump I've been feeling the past month or so might actually be melanoma, but a different type? 

If it is melanoma, and if I bring it up at my next skin check, how do they check to see if it's melanoma?  Does it have to be biopsied?  Ultrasound or CT?

Any and all insights appreciated.

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Anonymous's picture
Replies 4
Last reply 7/5/2016 - 10:22am
Replies by: MoiraM, Maureen038, Casitas1

Does anyone know if tooth decay (dental caries) is a known adverse effect of immunotherapy, specifically Keytruda and/or Ipi?

Thank you!

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Peter A's picture
Replies 1
Last reply 7/4/2016 - 8:24am
Replies by: Bubbles

I received a liver in February 23, 2016 and have just had a growth removed from my nose on June 16, 2016. The biopsy report diagnosed a melanoma that was 1.4x.9x.6 cm under the skin. This was to be a scar tissue removal where a mohs procedure was done to remove a squamus cell growth on my nose 2 years ago. This was a total surprise as I have been through so many scans and tests to qualify and receive a liver transplant. The Dermatologist said it is a very rare melanoma and He thinks I will need to have a large portion of my nose removed and rebuilt to remove the cancer. As you can imagine I am on high doses of anti rejection drugs and my immune system is very depressed and fighting this cancer will be a challenge.

Does anyone have any insight on this topic ?

I do have appointments set up with a meanoma center in San Francisco to consult with a surgeon and melanoma specialist.

Thanks for any responce.


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Anonymous's picture
Anonymous
Replies 2
Last reply 7/3/2016 - 4:47pm
Replies by: Cynthia C, Janner

I want to apologize in advance my concern is no where near as important as most of the posts on this forum but I did not know where to go.

I recenty had to switch my general practicioner because my other doctor retired.  I was at my yearly visit with the new doctor and he had me strip down to nothing and examin my moles.   In 15 years with my previous doctor this has never happened.   I am 34 years old and in pretty good health.   Most of my moles look very similar light to darkish brown small spots... some have weird shapes but they have never changed.   I do have a good deal of moles but blame that on being italian and nothing has ever come from them.

I have a few moles that he freaked me out over.  One is on my left butt cheek ( Sorry).  It looks like a dark brown circle and I have noticed it for years when I get out of the shower.  I never noticed it changing its one color but it is an odd shape... it is about 3mm-4mm,    The other moles were on the tops of my feet.   I have about 5 normal looking moles on the top of my feet... again nothing has ever changed.

 

This doctor said that having any moles on areas where the sun doesnt shine is not a good thing and I need to be checked by a dermatologist immediatly.    I asked if my moles looked like melanoma and he said no.. but you should not have moles in these locations and this concerns me.    So now over the 4th of July holiday I keep thinking that I have had these moles forever and my anxiety is taking over. 

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keepthefaith11's picture
Replies 11
Last reply 7/3/2016 - 10:15pm
Replies by: keepthefaith11, kylez, Bubbles, jennunicorn, Anonymous

We are 6 months out from my dad's stage 3C diagnosis. The full body pet scan back in December showed no cancer. Except in the lymph nodes which were taken out. He also had a CT scan in April, completely clean.
They are now back in Europe for the summer and last night my dad had an epileptic type incident. (He does not have epilepsy. He was rushed to the ER and they did a CT scan of the brain. The doctor says he sees a couple of "shadows" in the brain but can't be sure what it is. They are doing an MRI hopefully tomorrow.

Obviously with the recent melanoma diagnosis one has to assume that these are mets.

I am hopefully wishing this is something completely unrelated. But I realized it's unlikely. What do we do now? If these are in fact mets, what is standard procedure? Celeste, I have read a lot of your blogs and they have been very helpful. It seems gamma knife followed by Opdivo or Keytruda is the way to go. But what about surgery? How big do the tumors need to be for that to be an option? This is all new to me and I am quickly trying to read up on it. We thought we might have beat the Beast. I want to make sure I am ready to talk to the doctors in Europe if it comes to that. I also read that gamma knife, immunotherapy followed by the BRAF Inhibitors is a great option. His cancer is BRAF positive.

I am completely devastated right now..:(

Thank you everyone,

Annica

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Anonymous's picture
Anonymous
Replies 3
Last reply 7/2/2016 - 4:02pm
Replies by: jennunicorn, Anonymous, 2smallpeas

Hi folks! I want to preface this by saying I do have an appt. with a Dermatologist for mid August.

I have one mole above my bikini line that has gradually changed in the last few years. It started off a light tan color and fairly small to now be about .25". Not only has it grown, but little dark brown spots are popping up on the mole. It resembles a chocolate chip cookie. 

Admittedly, the only reason I made the appt. was to appease my husband. Because this spot stands out from the rest and my Father being a melanoma survivor, I promised to make and keep the appt. I'm more curious than concerned at this point.

While I know that you can't diagnose cancer simply by looking, does this mole look to be concerning? 

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CourtneyDMiller's picture
Replies 3
Last reply 7/2/2016 - 12:37pm
Replies by: Anonymous, CourtneyDMiller, DragonLadyRed

Hello,

Ever since I heard my diagnosis had the word melanoma in it, i havent been able to resume normal life. I feel so guilty because i should be extremely happy it the was cut it out and you are done kind, but i cant go a hour without thinking about it. I'm constantly checking myself for changes in moles/freckles and feeling for lymph nodes. I do have 3 papable nodes in my groin that i would guess are under a cm - I just had an aytypical mole cut off my buttock and leg, so I'm assuming that is why those are able to be felt. I also can feel one on the right side of my neck and two on the right. They are small as well, but they continue to freak me out. Two days ago i have also noticed that a mole on my arm has began to have a burning sensation. I am just constantly worries about everything. I want more moles/freckles taken off, but the doctors tell me that they are fine, and i should be done being cut on for a while. I had a full body check by my doctor as soon as we found out, and have already had all suspicious ones removed that she picked out. I have an appointment with a well trusted and liked dermatologist in my aera for a full body check again on 7/19. The thing im most concerned about is my lymph nodes.. what do you all think?

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CourtneyDMiller's picture
Replies 2
Last reply 7/3/2016 - 4:59pm
Replies by: michaelinsocal, Mark82

Hello,

Ever since I heard my diagnosis had the word melanoma in it, i havent been able to resume normal life. I feel so guilty because i should be extremely happy it the was cut it out and you are done kind, but i cant go a hour without thinking about it. I'm constantly checking myself for changes in moles/freckles and feeling for lymph nodes. I do have 3 papable nodes in my groin that i would guess are under a cm - I just had an aytypical mole cut off my buttock and leg, so I'm assuming that is why those are able to be felt. I also can feel one on the right side of my neck and two on the right. They are small as well, but they continue to freak me out. Two days ago i have also noticed that a mole on my arm has began to have a burning sensation. I am just constantly worries about everything. I want more moles/freckles taken off, but the doctors tell me that they are fine, and i should be done being cut on for a while. I had a full body check by my doctor as soon as we found out, and have already had all suspicious ones removed that she picked out. I have an appointment with a well trusted and liked dermatologist in my aera for a full body check again on 7/19. The thing im most concerned about is my lymph nodes.. what do you all think?

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CharmaineD's picture
Replies 8
Last reply 7/8/2016 - 9:20am

Good day to all, found this forum while searching for information. So glad I did. The entire internet is filled with doom and gloom about Melanoma and this is the first place I have found positive stories etc. I have not been diagnosed so obviously I am in a diffferent place than many on here. But I am desperate for more information about what I am facing as my doctor has been very vague. I have been in serious health situations in my life before but none has scared me more than the prospect of being diagnosed with Melanoma (have no idea why but I am freaking out a little). Usually I am a very tough person.

I have had a large (over 1cm) flat brown mole (with a much darker brown edge on one sideonly  on my back for at least the past 7 years that I positively know of. I actually have a number of moles on my back but this one is biggest. It could have been there much longer but it is not really a spot I can see without contorting myself like a pretzel.  The first time I noticed it I asked me GP to check it and he said I should not worry as it was flat and I should only worry if it elevates. Having no reason to doubt his opinion I never thought of it again. My eldest child started medschool 5 years ago and did her dermatology rotation this year. She asked me to please let a dermatologist check it out. I was very suprised when the dermatologist told me she thought it looked suspicious and took dermoscope photos of it. She said I must come back in three months and if it has changed or grown we remove it. So suddenly my  "harmless" mole went from ok to suspicious. I asked her what should I expect and she was vague.

When I got home I started researching on the internet (frightening thing) The more I read the more worried I became so I called her and said I wanted it removed rather (I am sure she thinks I am paranoid as her words were, I am happy to wait for three months but if it is causing you anxiety lets remove it). 

So looking for a honest opinion, am I letting my anxiety run away with me here? Surgeon said it was going to leave a relatively big scar but thats ok. So pardon my paranoia but since this mole has been around for years I am very worried that it had plenty of time to do harm if indeed it is malignant so it makes sense to act faster?

I feel like I am overreacting when I read all the brave posts on here but I really need some honest information about what I should do. Thanks for reading and I appreciate any feedback

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Replies by: desertsun, beneficii, Janner

I've had some soreness when lying down lately, and I was able to localize it to these 3 areas (circled in green):

http://imgur.com/cik5hug

http://imgur.com/ST4mApf

The pictures are taken from different angles.

The moles in question do look kinda strange. I have a doctor's appointment on 7/21 and I will get it checked out then.

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sallyandree's picture
Replies 4
Last reply 7/2/2016 - 2:30pm

Hello,

Do you know of anyone who has Stage IV melanoma which traveled to their stomach? My significant other's melanoma was removed 6 or 7 years ago, but we found out in March that the stomach problems and severe anemia he had in late February were due to the melanoma traveling to his stomach. He has been taking the Opdivo and Yervoy regimen (soon will be starting just taking Opdivo every two weeks) and we are hoping for the best. But it still is a brutal regimen! I understand that melanoma traveling to the stomach is rare.

Thank you,

Sally

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Happy_girl's picture
Replies 2
Last reply 7/4/2016 - 10:29am
Replies by: Linny, jennunicorn

I just wanted to share that I was able to talk with my doc and she is very confident that the spot on my liver is a cyst.  Just wanted to share the good news! Thanks for listening while I had my freak out moments! 

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Replies by: Bubbles, JoshF, MoiraM

I responded to Yervoy/Ipi. It shrank my tumours. It also took out my anterior pituitary gland and the damage is permanent.

When I go to see my endocrinologist and my oncologist, they both say that they are anticipating lots more cases of people with damage to their glands as a side effect of immunotherappy for cancer. They see me as as the first of many.

I imagine what I would feel like if my anterior pituitary gland had packed up but the Yervoy/Ipi had not worked. I have said that to them and they both hint that only people whose T cells had been activated by the Yervoy/Ipi would experience the damage to their anterior pituitary gland.

If that is so, I feel a lot better about all those people in the US who have NEAD and are 'doing' Yervory/Ipi because it has now been approved as adjuvant therpy.

Does anyone else know of evidence to support the hypothesis that the autoimmune side effects of Yervey/Ipi only happen in people whose melanoma cells are also being attacked?

Stage 3C Ipi/Yervoy responder with phobia of doctors/hospitals and pituitary dysfunction caused by Ipi/Yervoy

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