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
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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Megara984's picture
Replies 4
Last reply 8/23/2017 - 6:45pm

Hey all... My husband is going on round 3 of the Opdivo/Yervoy infusion in a week. His oncologist and nutritionist want him to eat 2300 calories a day and maintain the weight he has on him. Since his second round on August 10, I want to say the past 2 weeks have been kinda crappy. His coughing got slightly worse and he could only keep down so much food. Needless to say he has lost another 2 pounds. He FINALLY had a good day yesterday and managed to keep alot of food down and has mentioned that he feels like the swelling in his neck area has gone down (he can feel his adam's apple again). This to me is good news and that the Immunotherapy is working. I'm looking for some suggestions of High Calorie foods that will help him start gaining some weight back. Any suggestions are welcome. Also, has anyone experienced weight loss while on this type of treatment.

Thanks.

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mrspink's picture
Replies 4
Last reply 8/23/2017 - 4:49pm
Replies by: Scooby123, sister of patient, jennunicorn, Anonymous

I only posted a few times but my father passed from stage iv melanoma last week. Obviously heartborken especially becuase he was only diagnosed in March but we want to hopefully make a difference with donations to help with reasearch or educational purposes. 

We'd like to suggest a donation to a melaona group in lieu of flowers. I know this page has the post on the top that I'll use if I don't have any other suggestions but wanted to check with you all on any suggestions of great groups. 

Thanks. 

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AvaL's picture
Replies 3
Last reply 8/23/2017 - 11:43am
Replies by: SABKLYN, Anonymous, Toby0987

Hi, hubby stage 3a and year out from diagnosis. I know melanoma is wildly unpredictable but does anyone have any research/stats about chance of recurrence the further out from diagnosis one gets. I know it reduces after 2,3,5 years etc, but anyone know from and to what (approx) for this stage? Feels like need to appreciate each small milestone, cautiously of course x

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Nemesis's picture
Replies 6
Last reply 8/23/2017 - 9:33am

T1b here, 9 months post WLE and SNB. My melanoma was discovered during my post partum period (6 months after giving birth). I am not sure if a second child is off the table for me at this point. I want to wait for two years before trying to conceive, but I have read studies that say melanoma is worsened by pregnancy, therefore I am not sure if I should even risk it.

What would you do in my shoes?

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guynamedbilly's picture
Replies 1
Last reply 8/23/2017 - 9:27am

I had my first Nivo injection thursday and have not had any side effects at all.  I was nervous about it, which is nothing new since my diagnosis over a month ago, and my blood pressure was up.  In the end, there was nothing to it.  On a previous post, some were curious how I got approved for Nivo at stage 3a, and I am following up.  

 

I asked my oncologist about how I was approved so quickly, and she said they have had a lot of patients approved for it over the past two weeks, and only one rejection.  She acted like a lot of it depended on the insurance claim agent they tallked to, so maybe Bluecross is just especially good in this regard.  Either way I'm very happy and feel lucky to be near to Vanderbilt.  

 

If there is anyone needing this option, maybe now is a good time to get your doctor really trying to get it through insurance.  Good Luck

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Dhva's picture
Replies 4
Last reply 8/23/2017 - 7:59am
Replies by: Dhva, jennunicorn, AZSoCal

PET scan is positive -4x3x4 cm mass in arm.( about 9 inches from where the primary was located)  MRI also indicates an 8mm soft tissue nodule in the left suboccipital lobe.  No communication from the dr except to email an appointment with the surgeon.  Wondering, based on your experiences,  what is next besides surgery. By the way- found out about the test results on the patient portal.

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Anonymous's picture
Replies 7
Last reply 8/22/2017 - 11:33pm

All of my lymph nodes which tested positive are in the same "field / mat" under my arm (primary was on my chest).

Does the term metastatic come from the fact I may have micro-metastize particles which can travel throughout my blood and lymph system?

I'm having a hard time distinguishing between stage 3 and 4, but it seems like the difference is in where the melanoma is found and not necessarily a difference in prognosis.

I can see the difference between stage 2 and 3 being prognostically significant because at stage 2 the melanoma has only been "found" in the skin. However, just because it hasn't been found in other places doesn't mean the micro particles haven't started spreading to anywhere else.

ok, I started out with a question and ended up scaring myself.

Diagnosed Jan 2017 (stage 3b with unknown primary). Radical neck dissection Feb 2017 (4 positive nodes in level 5A). Ipi started Mar 2017 - ended May 2017 (Hypophysitis), recurrence Sep 2017 (node by ear)

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Nicklindner's picture
Replies 3
Last reply 8/22/2017 - 7:23pm

Good Morning,

I started immunotherapy back in December and the first few times I ate my favorite food(sushi) i ended up vomiting shortly after.  I just chalked that up to the drugs and not the sushi as I had thrown up other times as well.  I had been feeling relatively well, as it related to naseau, for a few months and 2 weeks ago tried eating sushi again. Within 2 hours I was hugging the toilet and the experience was different and more painful then before.  I still have not recovered fully - the naseau has remained and my appetite has suffered.

 

Has anyone else found that once enjoyable foods now have negative side effects? have you found any solutions? 

Thanks everyone,

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Anonymous's picture
Anonymous
Replies 0

 

As far as I understand, the approved treatments for bone mets (excluding systemic therapies like BRAFi and PD1) are as follows:

1. X-ray Beam Therapy

2. Denosumab/bisphsphates

3. Surgical removal

Are there any other treatments for bone mets and melanoma or treatment strategies beyond this that specifically treat bone mets? Are there any centers that focus on bone met treatments? Is SRS an option once XRT has been tried? Any non-pharmaceutical approaches backed by scientific studies? Perhaps I'm grasping at straws here. 

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