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.

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kp23's picture
Replies 6
Last reply 8/27/2017 - 7:29pm
Replies by: kp23, Janner, Anonymous

Hello...a little background before my question.

End of July I noticed a spot on my right thigh - not a mole and not a freckle - a little bigger than a freckle, but smaller than a pencil eraser. It has been there my whole life, but I noticed it seemed to be darker. Didn't notice any new colors, and there was no change in the size at all, just seemed darker than normal. I kept an eye on it, and of course poked around at it - because, anxiety - often to assess whether the texture/feel of it had changed (it had not). Then a couple of weeks later, I noticed it seemed just slightly raised...scratched and poked it and was able to kind of peel away a layer. No blood or oozing, and a thin scab formed after. A week later, I saw my dermatologist. Scab was still partially there - showering had washed away part of it and underneath was pinkish skin. 

Dermatologist did a shave biopsy, and results came back last week benign. I have not read the full path report - I spoke with my dermatologist over the phone and she explained it was a benign sun spot according to the report. I did check with the lab to verify that it was a dermapathologist who did my biopsy. My dermatologist is going to have their in house dermapathologist look at my biopsy, too, for peace of my mind. 

Here is my question - not sure if it's crazy, but I've been feeling super anxious and need to ask it. Is it possible for a path report to be wrong? What if this happened to be a fast growing melanoma that grew downwards quickly...would it be possible for there to be no more atypical/cancerous cells at the surface, therefore resulting in an incorrect diagnosis of the biopsy? Does that even make any sense? My dermatologist told me not to worry, but I am so worried! My fear is what if the path report is wrong, and the cancer spreads and game over. 

Thank you in advance to anyone who takes the time to respond. I deeply appreciate it. 

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Vcollie's picture
Replies 4
Last reply 8/27/2017 - 10:10am
Replies by: keepthefaith11, Vcollie, Anonymous

I'm not sure if I'm posting this in the correct forum. 

Regardless, here it goes. 

My 71 year old father was diagnosed with stage 4 melanoma Oct 2015. He first reported a lump in his leg a year earlier but it was missed by GP and oncologist. 

December 2015 he started Opvido infusions every 2 weeks. No side effects. 

December 2016 he had lymph nodes removed from his groin. Prior to Christmas, no more melanoma was found in his lungs. 

He continued his regular Opvido treatment. 

May 2017 treatment was stopped upon a recent CAT scan showed the melanoma had spread to abdomen, chest, neck and brain. June 2017 he started decadron. No signifcant side effects. 

July 2017 he had one radiation treatment for one side of his brain followed by 5 daily treatments to the other side. The following week he was back on his regular immunotherapy. Immediately he had an adverse reaction, fever, chills, confusion and was brought to the ER. Doctors at small hospital initially misdiagnosed with pneumonia and he started 5 continuous days of various antibiotics. No improvement. His blood oxygen levels continued to decline as low as 67. His oncologist luckily was at that hospital for clinics and saw him. He was immediately started on 3 steroids as there was no infection but he was having an serious adverse reaction. 

Since July 26 (day after last immunotherapy treatment). There has been significant changes and decline in my dad. He requires supplemental oxygen at night and most parts of the day. His mental state has sharply declined. He's very confused. Unable to finish his sentences, forgets how to get dressed, is withdrawn and appears depressed. My mom and I brought him back to the hospital regarding his mental state. 

It is a small hospital that lacks specialists and we are not getting concrete answers/explanations. Yesterday his MRI showed slight decrease in brain lesions but still some swelling. There is an infectio of some sort but not specified. The doctor says his lip sore is/was shingles (herpes virus). 

Again he could not explain the confusion.

side effects of radiation?

steroids?

as the result of the adverse reaction to immunotherapy?

His age ...is this what happens to seniors with brain mets?

We are not sure if this is short term or the beginning of his cognitive decline. 

Any similar stories? Or possible answers?

many thanks 

Vanessa 

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Ridingaroundwith27Jennifers's picture
Replies 6
Last reply 8/27/2017 - 9:28am

Hi All,

I keep learning new things.  I've learned the worst place to have an IV when getting contrast for your CT is the wrist.  I've had 5 CT scans prevously and it has never hurt.  I almost jumped out of the machine but no more complaining.  The scan looked good.  Tumors are still shrinking.  For some reason I thought there were only two left but it turns out it is three left.  Not bad considering I started out with over twenty.  This time around the oncologist mentioned that it could be scar not tumor.  I didn't realize that it was possible to end up with scar tissue where tumor initially was.  So we continue with nivolumab and wait for the MRI next month.  If that looks OK then we will make a plan. 

The other good news is that my hair is growing back after the brain surgery and radiation.  It's almost an inch long and doesn't blend well with the rest of my hair.  The style is a little bizzare.  I actually went out to lunch on Friday without a hat.  I should just go get a new style but I'm afraid to get my hair styled because of the surgical site.  I know it's silly but I haven't wanted anyone near my head since the surgery.

Augut 29th, 2016 is the day I had my first CT scan and started this journey.  As the one year mark gets closer I find myself looking back on the journey.  The short version is that I fought with my primary care's help to get a biopsy.  [My dermatologist of 10 years failed me.]  CT scan at the ER; biopsy; stroke; 4 day hospital stay; Ipi/Nivo combo infusion 1; Ipi/Nivo combo infusion 2; extreme fevers, chills, nausea; 5 day hospital stay in the MICU with IV antibiotics and blood cultures to rule out infections; 1 day home with extreme nausea; IV steriods with another 5 day hospical stay.  2 months on high doses of prednisone and then cellcept;  2 months of watch and wait;  brain tumor;  brain surgery resulting in loss of feeling in right lef and foot; tumor regrowth at 10 days post op; targeted radiation and nivolumab.  Seizure.  Seizure meds.  6 months no driving.  Did this really all happen to me?  Has it really been an enitre year?

Who am I now?  What's my new normal?   Three forever meds.  I'm a pill person now.  Pills so I don't have a seizure, pills for my thyroid, pills so I can sleep.  Injectable blood thinners.  Pills to control the itching.  I've got 3 more months on the driving ban.  My right foot is still numb.  

Apologies for the mega post.  I'm sure many of you have been through so much more than I could ever imagine.  You've come through the fire so I know I can too.  Best to you all and thank you for being there.

Cheers!

Jennifer

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Hawthorne7304's picture
Replies 1
Last reply 8/26/2017 - 12:34am
Replies by: Anonymous

Hello! I was diagnosed with Superficial Spreading Melanoma 2 weeks ago. This past Monday I saw a plastic surgeon who will do the wide excision and sentinel node biopsy. My derm did a shave biopsy, the pathology report showed 0.82mm thickness (although I'm feeling like that's probably not accurate given the shave biopsy), cells are showing mitosis and the borders were not clean. This thing came out of nowhere and grew FAST. My biopsied spot has healed and as of two days ago just appeared dark pink. Tonight I noticed it's black again and looks larger than before!! My surgery is schedule for Sept 5th and I'm afraid that's too long to wait. Is this normal to wait this long or should I call and push them a little? I'm 39 and a mom to two little ones and this is all I can think about. 

Thank you for your feedback!!

Noel

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Megara984's picture
Replies 6
Last reply 8/25/2017 - 4:03pm

Hey all. My husband just started having really bad knee pain behind his left knee. He's had some pain there before being diagnosed with melanoma. I'm wondering if the Opdivo/Yervoy is making it worse? He taking a low dose of Advil or Tylonel to help. Has anyone experienced this? Is it a side effect? Or is it the immunotherapy working on his bones. (His Melanoma is in his bone to some extent). Thanks. 

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NicholePhillips's picture
Replies 3
Last reply 8/25/2017 - 2:31pm

I was diagnosed in February 2015. Stage 3b. I was NED since April 2015 and had interferon treatment for a year which was completed in June 2016. My latest CT scan showed tumor in my rt pelvic area and confirmed melanoma. They believe its lymph node related. I did have 8 nodes removed back in 2015. I see the surgeon and oncologist next week. Anyone else with recurrence like this and if so what is next? Surgery and more treatment? 

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Yesterday, I went to the dermatologist to look at a nasty "mole" on my thigh. He looked at it, did a partial excision for biopsy and basically said: "I suppose I could be wrong, but I'm almost sure that's melanoma and it's very thick. Once you go over 4 mm it really doesn't matter, and this is definitely over 4 mm. We'll put a rush on this, and my guess is we'll send you down to [local big hospital with cancer center], and they'll do a full excision and test what's called a 'sentinel node' and other nearby nodes to see if it has spread."

So I'm waiting on the biopsy and just learning about melanoma while I wait. The Derm didn't struck me as a cavalier guy, so I'm thinking he feels pretty confident in his diagnosis--though I obviously hope he's wrong.

So what I'm trying to get a feel for (and can't find anywhere) is what percentage of "thick" melanomas (assuming for a second that's what it is) end up being Stage 3 or Stage 4? I've had some family members and close friends with cancer, so I'm well aware that "every case is different" and all that, but I'm an analytical type, and I just want to get a sense of my odds. We have to wait on the biopsy results, and then (presumably) go down and have the nodes tested, so we're still a good number of days away from finding out whether it's spread IN MY CASE, but I just want to get a sense of what the likelihood might be. 

55 y/o WM, fair skin, red hair, blue eyed, but no family history of melanoma. Anyone know where I might find the percentages I'm looking for?

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Sharon93065's picture
Replies 11
Last reply 8/25/2017 - 2:06am

When my liver numbers went thru the roof my 4th treatment of Opdivo/Yervoy was cancelled and i was put on Prednisone.  50 per day for 5, then 40 per 5 etc.  Weaning down on dose. My AST and ALT have come down, being tested by weekly.  But i have not slept since the first night. I wake up at 1:30 to 2:30 and that's it.  I'm  up.  Sometimes i can go back to sleep at 4 or 5am for only a  hour or 2  but not always.  Too tired to get up to go to church yesterday.  I have message to my oncologist to ask 'liver' doctor what can i take maybe even 1 to 2 days a week to sleep.  I have trazapan, xanax, benadryl, melatonin.  I thought melatonin would be more natural but i read it does something with our immune system.  He told me on my last visit not take take xanax.  I've only had one since May anyways, i try not to.  All these go thru the liver so we're not supposed to take them.  I looked up  my Health Summary and it's called Drug Induced Hepatitis.  To make matters worse I am sure i have a bladder or UTI infection, so drinking lots of water etc.  I did email him to include urine test in todays liver panel.  So last night in the 3  hours sleep i did get up got up every hour to potty.  Has anyone else had insomnia from Prednisone?  I've drank hot mile with chamomile tea. I even read a teaspoon of honey tells the liver to give you sleep.  Didn't work.  I am taking a xanax at midnight tonight.  I set my alarm, I'm sure one pill won't hurt me (I hope). Or s hould it be a benadryl???   I am upset that Kaiser has me waiting a month for my new Petscan. I am calling Membership to complain tomorrow.  I am both worried and excited to see what has been going on inside of me.  The inital large bump on my back disappeared the day after the 2nd treatment (Icould feel with my hands.)  But I feel stuff going on in other places I'd like to know about.  And thank you for those that have sent me those wonderful messages about not being too upset about missing my 4th dose.  Sharon

 

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yulkame's picture
Replies 2
Last reply 8/24/2017 - 6:26pm
Replies by: yulkame, Bubbles

Hello,

Has anyone successfully tried T-VEC injections at an advanced stage 4? What was your experience/side effects?

Ippi/Nivo, and Pembro seemed to have failed. Lots of bone mets, and the platelets are very low, requiring frequent transfusions. Bone marrow is probably involved. 

Another question--has anyone tried intralesional IL-2 injections? What was the outcome/side effects?

This is for my mom , I wrote the post about her history in (https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/treatment-options-failed)

One more question, has anyone tried any targeted therapies for NF1? If so, what are the side effects and outcomes?

Thank you!

Yuliya

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Anonymous's picture
Replies 5
Last reply 8/24/2017 - 3:55pm

My husband was diagnosed with melanoma 2 days ago.  The dermatologist did an excision biopsy.  The Breslow depth is .24mm but that is all of the information my husband was given.  I've requested a copy of the pathological/histological report and I will find out the Clark level, mitosis factor et al.  The dermatologist referred him to a surgical oncologist.  Is this standard procedure for a very thin tumor or does this referral suggest something more serious was seen in the report but not shared with my husband?  His appointment with the oncologist is in 3 weeks.  That seems like a long time.  I won't be able to wait that long for staging information.  I'm preparing myself to understand the pathology report.  Can I be given the actual histological images the pathologist viewed?  Those are what I'm focusing on.  I have jumped head long into learning everything I can about the biology of this disease.  I'm not a wierd, bossy, control freak wife but my husband isn't big on in depth research of anything medical, especially a diagnosis that is scaring him badly.  I'm scared too but knowledge is power and I'm more frightened by not understanding.  Thanks. 

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smyers5015's picture
Replies 3
Last reply 8/24/2017 - 3:31pm

Hi All,

I was diagnosed with metastatic melanoma in April 2017.  I had a 8x6cm mass on my left adrenal gland and a 1.3cm nodule on my right lower lung lobe (according to the PET scan just before treatments started.)  I'm also hypertensive which I take lispro, and type 2 diabetic which I take insulin.  I was able to make all 4 treatments and really the only side effect I went through during treatments was fatigue.  At 3 weeks after the final infusion I had a 2nd PET scan which showed the adrenal mass had reduced to 4.5x3cm and no change in the lung nodule.  A day or 2 after that PET scan I started having some bad side effects... extreme fatigue, muscle and joints sore to the point I didn't have full mobility, diarrhea, lost normal taste, and now produce almost no saliva.  On top of that without changing my meds or usuall diet I went hypoglycemic 3 times and found my blood pressure had dropped to 107/54 (probably the cause of the extreme fatigue).  My oncologist put me on Prenisolone 5 day pack and by the end I felt better than I had in months... seems everything cleared up except for the taste and saliva production.  The night after the pack was finished my blood pressure dropped again, and 2 days after all the symptoms came back with fever and chills added.  For some reason he seems adverse to keeping me on the steroids.  Has anyone had these type of symptoms?  What did your onc. do for it?

 

Thanks for any input!

Steven

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Newmanbell's picture
Replies 2
Last reply 8/24/2017 - 10:44am

Hi all,

Earlier this week I asked for help deciphering a ct/petscan report.  There were 3 to 4 areas of concern in my husband's chest (who is stage 3b).  I spent the last two weeks sad, tears, and worried over this.  We received a call from our Oncologist and he said that the 3/4 lymph nodes enlarged are due to carbon inside them.  My husband is a finish carpenter and the dust, etc. he inhales must be contributing to these lighting up on the screen.  Sure hope he is right and that is all there is!  If that is the case, the first scan after having a wide incision from a large tumor removed and lymph nodes out 5 months ago, all is clear presently.  He was only able to do 3 out of 4 Yervoy treatments.  I believe right now we relax until next scan since unfortunately there are not many other options for Stage 3b adjuvant setting.  I'm going to try and just enjoy the next 3 months...

Our Oncologist is waiting to hear back from Steve Hodi (who we met) at Dana Faber in case he recommends something else.  Take the good news when you can, right?

Donna

 

 

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Anonymous's picture
Anonymous
Replies 8
Last reply 8/24/2017 - 6:33am
Replies by: scottw1978, geriakt, Anonymous, Mark_DC, Ed Williams, Bubbles

I have currently enrolled in a clinical study for my stage 3B melanoma.  Yervoy vs. Keytruda.  I have not yet started.  I am getting nervous about this....any thoughts/input on efficacy of PD1's for stage 3?  My original hope was the PD1 as it seems to be better tolerated?  However, I obviously want something efficacious.  I know their is a ton of expertise out there..thoughts?  Thank you...

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Dave63's picture
Replies 10
Last reply 8/23/2017 - 10:34pm

I was recently diagnosed with malignant melanoma stage T1. I explained to my family about diagnosis and that I had cancer on my shoulder. Their response "it's only skin cancer, it's not that bad". I guess I don't know how to take that. I understand there are other cancers that are more severe, maybe I just shouldn't mention it to anyone. I've never had anything like this before and I was just looking for support. Has anyone else had this reaction from family?

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AlexBogues's picture
Replies 3
Last reply 8/23/2017 - 7:25pm
Replies by: Anonymous, Janner, AlexBogues

So about two weeks ago I went to a dermatologist for the first time to have a mole on my left shoulder/back checked out (http://imgur.com/a/OiTNU see image). I got the results last week and they said it was a Compound Nevus with Severy Atypia. I was very scared hearing sever and began to worry. I am scheduled to get it removed this Friday and am afraid some of the back pain and sholder pain im having on the same side as the mole is melonoma that has spread.

My question is how unreliable could a shave biopsy be to diagnose melonoma? If they called it Sever Atypia could the worse the diagnosis be "Melonoma in Situ?" Could my back pain be melonoma that has spread to my bones.

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