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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Anonymous's picture
Anonymous
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I'm a little behind but your post caught my eye. I had a persistent cough with no diagnosis last winter. It happened following a mild respiratory infection. I was diagnosed with Laryngo/pharynx reflux. I would cough up clear frothy sticky mucus by the tons and always had a rattle in my throat. Another symptom classic to LPR is the feeling of a glob of mucus at back of throat at all times. It cannot be diagnosed by typical imaging. An ENT can perform an exam to diagnosis. It has none of the classic symptoms of reflux such as heartburn, burning in esophagus etc. Google LPR Laryngopharyngeal reflux or silent reflux Hope this helps.

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Anonymous's picture
Anonymous
Replies 3
Last reply 12/23/2015 - 11:05am
Replies by: Toby0987, Anonymous

I was told my Thyroid was "full" by ENT. Had an ultrasound today and technician said she could tell me exactly what was what,  instead of waiting for ENT. She said my thyroid was normal but had 8mm nodule that they would watch for a year. I said, so it can't be melanoma, she said " Oh no, melanoma is only on your skin" ! What the what! I am 3b, mitosis 18, ulcerated. Any thoughts?  I'm thinking of dropping all med appts and follow ups, I'm sick of the hype to find out it's nothing over and over again.

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Anonymous's picture
Anonymous
Replies 5
Last reply 1/6/2016 - 6:37pm
Replies by: Anonymous, Scooby123, Mat

I have liver mets and am on Keytruda for five months now.

My blood work for liver and LDH etc is normal but just lately i have noticed my liver is tender in the mornings and i can sort of feel activity going on there. Sometimes i feel a sharp twinge as well.

Is this consistent with worsening liver disease? What can i expect if things get worse?

Are their any treatment possibilites. I am due for a PET scan next month but already feel like things are spiralling out of control.

 

 

 

 

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AshleyS's picture
Replies 1
Last reply 12/22/2015 - 11:50am
Replies by: geriakt

Ugh...I have had a day full of nausea, stomach cramps, and diarrhea. This is the part I hate about cancer...I keep trying to guess if I'm sick, if it's side effects (I'm on Opdivo), or if it's some kind of bad sign that my melanoma is spreading/re-growing, 

In April I was kicked off the Ipi/Nivo trial after 3 infusions. At the end of May I had a single dose of ipi. Since June I've been on Opdivo. I had lots of gastro issues until the middle of September, but they cleared up. I am on meds for hypothyroidism as a result of the drugs. In November, I learned I'm NED.

Has anyone else had side effects return after disappearing? 

I could be jumping the gun - I have lots of exposure to germs, church, hospital, 2 kids in daycare when I'm at treatment or sub, and a husband who is an elementary teacher. 

I'd appreciate any thoughts!

Ashley

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mireillep's picture
Replies 1
Last reply 1/8/2016 - 9:06pm
Replies by: sayres

İ am a 74-year old female.The malignant melanoma on my ear(in 2013)metastasised atypically and İ have undergone successful surgery on my breasts followed by 4 months of Tafinlar 75mg which eliminated a small tumour on my lung.The side-effects have been severe with mainly hair loss and strong back pain on my right shoulder blade and upper right arm and thickening of the skin under my feet.İ have to remain on Tafinlar for 3 more months at 150mg daily.What İ want to know whether anyone has experienced similar side effects.Has your hair grown back and has the back pain disappeared?

Did the treatment work?

Mireille


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mkirkland's picture
Replies 17
Last reply 12/22/2015 - 8:55pm

Well the day is here. I will get first round of Yervoy today. To say that I am scared would be an understatement! Lol any extra prayers would be appreciated! Thanks everyone!! 

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eemmiillyy's picture
Replies 1
Last reply 12/22/2015 - 11:32am
Replies by: Janner

Hi everyone,

I was diagnosed with melanoma in situ when I was 18 years old (back in 2012). The little spot looked like a very irregular freckle that had multiple colors and was growing quickly. I found it on on my own, and the derm did a biopsy then a WLE a week later. The scar is ~3in. long, and the stitches ripped during healing so the center is also about the size/width of a quarter.

I know there's a pretty low chance for reoccurrence following a WLE on such an early stage of the disease, but today I noticed a new freckle right in the middle of the scar. I look at the scar in the tub fairly often, so I know it's new... And this is how and where the last one started.

Is this something I should be worried about? Do any of you have experience with in-scar reoccurrences? Especially with in situ levels?

Thank you!
-Emily

 

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Anonymous's picture
Anonymous
Replies 7
Last reply 12/26/2015 - 8:53pm
Replies by: Anonymous, tapsisarkar, Janner

Hello everyone,

I have had my skin checked recently and had a couple of biopsies done which came back medium Atypical.  I'm not so sure my doctor looked very carefully at my back, as it doesn have heaps of moles like my legs do, just lots of little freckles.  Anyway, I've been aware of a little growth that I could feel that was hidden under my bra strap, which has been growing. When the doctor checked me it was under my bra and she didn't look under it, so today I remembered it and got my husband to take a photo (in the Google Drive link below).  He said there was a larger one near it, that I didn't know what there, which has pigmentation on the left hand side.  The one I can feel has no colour, is just a raised oval area. 

I've taken a photo of both next to a ruler (in centimeters as I live in Australia) and wondered if i should go back and ask my doctor to look at them and perhaps a biopsy?  I'm aware that this is not a place to seek diagnosis, so I am interested in thoughts and suggestions please.  I'm 48, so perhaps these types of growths is just an age thing.  Thanks for your time. I would love your thoughts please?

https://drive.google.com/file/d/0B__F_Ob7Tx3EeDBjWTc2OFNtMGc/view?usp=sharing

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knittingirl's picture
Replies 7
Last reply 1/8/2016 - 8:38pm

Hello,

I was following a yervoy/opdivo infusion since October but after the third infusion my liver enzyms went up, I developped hypothyroidism and finally diarrhea ( 6-7 stools a day). I have started prednisone last Tuesday ( 40 mg in the morning and 20 mg at night). While I am under the medecine it controls pretty well my diarrhea but around 2 a.m I wake up and go 2 to 3 times to restrooms until 5 a.m and same at the end of the afternoon.I am very tired because I stay long time awake at night.

I know that everyone is different but how long should I wait before to see any improvement regarding the diarrhea ? I understand also the prednisone will have to be tapered before I stop to take it, how long should it take ( weeks ? days ?)? Any advice for having better night sleep  ( I prefer natural remedies )?

I won't be able to get the fourth infusion, but the doctor told that if my diarrhea gets better quickly, we may consider only Opdivo as Yervoy seems to be the most toxic effects of the combo.

The good news is the tumor is not detectable anymore under my skin and neither with the portable ultrasound at the doctor's office. I wait impatiently for the CT scan.

Best

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Anonymous's picture
Anonymous
Replies 1
Last reply 12/22/2015 - 11:43am
Replies by: Janner

my skin feels like its ripping open on back by moles. is that a possible indicator of things to come. its 2 inches away from primary melanoma site?

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jackister's picture
Replies 4
Last reply 12/21/2015 - 8:17pm
Replies by: Bubbles, jackister, Anonymous

Discovered two brain mets last week, after having been stage 3, unknown primary since January of this year.

 One met removed by surgery, other to be removed with rapidarc very shortly. Can not get trials because of very low risk stage 1 colon cancer surgically removed 2.5 years ago. I want to get the ipi/nivo combo that was approved in October, but I am getting static about that not being for adjuvant. My question is does anyone have a doctor in Southern California who has used this combo for adjuvant stage 4 and gotten it paid by Medicare. My plan would be to take the combo and then pembro and clearly the other way around would be just as good or better.

 

Jack

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TomJ6299's picture
Replies 4
Last reply 12/21/2015 - 7:16pm

Hi everyone, just checking in, I was diagnosed on December 16th, 2011 with Choroidal Melanoma, enucleation of my right eye was performed on December 22nd, 2011. I have not been sick since. Just a message of hope for anyone who is newly diagnosed.  

I made a mistake after learning about the cancer,  I made an identity of myself as a cancer patient, and a survivor. I would say be careful of this, it gave me an excuse to play the victim role, which is not heathy. I am not a victim of anything, and I mean ANYTHING. I will not go into further detail about this part unless someone would like to talk to me about it.

My only other regret, (using the word regret for lack of a better term), would be rushing to a decision to remove the eye. The great team at Wills Eye Institute in Philadelphia Pa. were wonderful. They educated me on all of my options, and made it clear that the survival rate was basically the same whether removed the eye, or treated and killed the cancer with radiation.

My ocularist did a great job with the prosthetic eye, it looks great. The only problem is in 4 years, it has never ceased to annoy the hell out of me, Lol. I have tried every possible remedy, but it weeps and the discharge is slimey, then it hardens on the prothesis, making it painful to even blink. Hahaha, oh poor me right? I know, but I sometimes wonder, had I kept the real eye, it may have been better for me.

Anyway, all is well, and if you recently had an eye removed, don't worry, you mind will adjust your vision in a short while, and you will actually park your car all the way in the parking zone again.  And be careful at buffets, I knocked a few trays out of peoples hands because of my blind side, Haha it was classic to see their expressions !

 

 

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Anonymous's picture
Anonymous
Replies 2
Last reply 12/19/2015 - 9:26am
Replies by: Ed Williams

Has anyone ever heard of the three drug being used together? Any thoughts on the idea?

Rebekah

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Gene_S's picture
Replies 2
Last reply 12/20/2015 - 8:40am
Replies by: Anonymous

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Gordknight's picture
Replies 4
Last reply 12/22/2015 - 11:41am
Replies by: Janner, Gordknight, stars

A year ago I was diagnosed with a stage 1a melanoma on my neck.  Clarks 2 .22mm depth.  Havent had any other issues or recurrences from that site and I have been going to my derm for follow up.

However, there as always been a mole on my face that I never liked the look of and I mentioned it to my Derm.  My der is very skilled and he looked at it with his dermascope several times.  He said its definitely NOT a melanoma but promised that it was at least mild to moderately atypical but because of my profession (acting on stage and film) he said it would probably be best to leave it and watch it because he didnt want to risk scarring.

I was still not comfortable with it so he said I should see a good plastic surgeon if I really wanted it removed.  So a few days ago that is exactly what I did.  My pathology came back on my health account today (havent heard from the actual Doc yet about it) and I am really confused and concerned. Here is my pathology.  Maybe you all can help me figure out what it means.  I REALLY don't want to have more removed or risk scarring my face more.

PATHOLOGY:

A. SKIN, RIGHT CHEEK, EXCISIONAL SPECIMEN: ATYPICAL LENTIGINOUS JUNCTIONAL MELANOCYTIC PROLIFERATION ON SOLAR-DAMAGED SKIN WITH FOCAL BASALOID ATYPIA AND CALCIFICATION OF THE DERMIS.

THE ATYPIA INVOLVES PERIPHERAL INKED TISSUE MARGINS. SEE MICROSCOPIC EXAMINATION.

MICROSCOPIC EXAM:

A. Multiple step sections of skin extend to the superficial subcutaneous tissue. There is a background of solar elastosis. There is an atypical junctional proliferation of single and focally apparently nested melanocytes with scattered moderate cytologic atypia, bridging of rete ridges and patchy confluency. Focal basaloid atypia not involving a peripheral inked tissue margin is noted. There is central calcification of the dermis which causes partial disruption of the specimen. Deeper step sections show similar findings. An immunohistochemical stain is performed with appropriate controls.* Melan-A highlights the atypical junctional proliferation on solar-damaged skin with at least moderate atypia. It raises the possibility of a precursor lesion of a more aggressive lesion such as melanoma in situ. We cannot make a definitive diagnosis of melanoma in this specimen. The lesion involves peripheral inked tissue margins. If a complete re-excision is not done at this time, then very close clinical follow up at this site with additional sampling or re-excision of any residual clinical or recurrent lesion is recommended, as clinically indicated. I assume this specimen is representative of the entire clinical lesion/process. Clinical correlation is required. I would be happy to discuss this case at any time. 

 Dr. Zarandona (also a dermatopathologist) studied this case. The above is a consensus diagnosis.

Thanks in advance for advice!

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