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
Replies 3
Last reply 6/13/2016 - 4:07am
Replies by: Anonymous, Janner

Hi, hoping for some insight.  Seven years ago I had shave biopsy on a mole which changed shape during pregnancy.  I remember being told pathology was fine but I did not ask for written lab results...something I now always do.  I have a new dermatologist and mentioned this mole removed years ago.  She looked and noticed a bit of color but wasn't sure if it was part the remaining mole or scaring. Because I didn't have the original pathology results we decided to biopsy it again. Pathology came back as mild atypical, excision recommended.  My doctor is out of the office this week so the nurse called.

Is excision really necessary for mild atypical?  Would scarring for multiple shave biopsy hide more advanced atypical cells in the current pathology results?  Should I be worried this mole was more serious seven years ago?  I thinking because there are no original slides to compare to the pathologist recommended complete excision.  Thx

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JoshF's picture
Replies 14
Last reply 6/8/2016 - 5:18pm

Surgery on Friday went good. Got home yesterday and now healing. Apparently there were 2 tumors that were roughly orange size. A couple of satellite lesions on colon and removed my appendix because apparently a tumor started growing there. Also 3 very suspicious spots on/in liver. Those were not removed. Too close to vein and at this point not worth the risk. Surgeon felt it better to heal up and get on treatment quicker. All that growth in the matter of 6 months. Unreal. They're sure it was there prior just not detected. So now I'm healing, waiting for path results and have decision to make. 

I am going to MD Anderson on the 10th. I need best option possibly. How my life changed in matter of weeks. Just very depressing. Long road ahead...scared of where that may lead but will trudge on. Just wanted to give an update. Appreciate all the support I've received over past couple weeks. Praying everyone is well!!

Josh

Let's work for better treatments....for a cure!!!!

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Rosegargala's picture
Replies 4
Last reply 6/2/2016 - 8:13am
Replies by: Rosegargala, Janner, MoiraM

  This is my ct result . any input would be appreciated . I am stage 3a
             The heart, great vessels and mediastinal structures are within
normal limits.  There is a lymph node in the right hilum which
measures approximately 1 cm in short axis and is at the upper limits
for normal.  Other small mediastinal lymph nodes are also noted, not
size significant for pathology and likely inflammatory and reactive.  

 
 The left lung shows no opacification.  Previously diagnosed
opacification in the lingula is no longer seen on this examination. 
At least four nodular densities in the medial aspect of the right
lower lobe are noted.  The largest one measures approximately 1.25
cm.  These may be true pulmonary nodules versus atelectatic changes
adjacent to vertebral body osteophytes.  However, given the patient's
past medical history of malignancy, further evaluation of this
finding with PET CT is recommended.

Roseyes

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Hello Dear Friends. 

I have one question and please help me, as the last Pet scan was not as good as we waited, we are looking for an alternative way of treatment, we found Atavistic chemotherapy and Immunology by Dr. Frank Arguello, MD. we are interested, if someone treated by this methode and what is the success rate, how do you think, will it be effective after keytruda Treatment ? thank you in advance for answer, Mari and I are looking forward for your response.

 

Nino and Mari

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desertsun's picture
Replies 7
Last reply 9/11/2016 - 10:03am

My husband had his 14th keytruda treatment Friday. Labs that day showed a hemoglobin 8.4. The previous 3 week lab level was 11. The PA says this is treatment related and can't be corrected with diet or supplements yet we are waiting until Tuesday as directed to do another lab to check the level and then blood transfusion if indicated. Syptoms of severe shortness of breath and weakness in just trying to walk around. Anyone else experience this with keytruda?

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takkat's picture
Replies 1
Last reply 5/31/2016 - 9:04am
Replies by: Ed Williams

Well, after the met in my lung was removed in october ipi was withdrawn and I never did it.

Two weeks ago I had a sesure and was taken the surgery to have a tumor taken out of my head.

I have another one that will be taken with radiation.

This time I also have a tumor on my spleen so they are going to do imunotherapy.

Does this seem like it is moving fast? I mean the met on my lung was their for years and growing slowly.

And now a met on my spleen and brain.

 

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andybyars's picture
Replies 2
Last reply 6/1/2016 - 2:53pm
Replies by: Anonymous, Bubbles

Hello All:

Just found this forum.

Diagnosed Stage 4 metastatic Melanoma December, 2015.  Made it through 4 treatments of the Yervoy/Opdivo combo.  Got one of the Opdivo alone  treatments and developed colitis.  Cleared with Mega dose of Prednisone.  Two more Opdivo treatments. Now have pneumonia again.  Biopsy this week to see just what is causing.  Right now all Opdivo treatments stopped.

Question: Has anyone else experienced pneumonia as a side effect of the Opdivo?

I have only one symptom: shortness of breath.  No coughing, no chills, no pain in chest if I cough.

My thanks to you all.  Glad I found this forum.

 

---

Andy Byars  - pb7357@gmail.com

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Anonymous's picture
Anonymous
Replies 2
Last reply 5/30/2016 - 6:34pm
Replies by: ldub, Patrisa

About two weeks ago I went to my dermatologists office for a body scan.   Looked over my body and the whole process took about 10 minutes.  Nothing was found  I have a good deal of moles and also light brown sun spots on my forearms and shoulders.  

Yesterday our family had a cook out at our pool I noticed a very light brown spot on my shin. It is all one single color very light brown and honestly matches the color of all my other spots  but when I look close the borders look irregular.  It is about 2mm in size.  I know my derm looked at my legs and should have seen this  spot during the scan.  Is this something I should concern myself with or just keep an eye on?  It looks similar to the sun spots I have on my shoulders and forearms? 

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Anonymous's picture
Anonymous
Replies 9
Last reply 6/6/2016 - 10:36am
Replies by: lakegirl67, jennunicorn, Charlie S, Anonymous
Kare83's picture
Replies 5
Last reply 6/26/2016 - 6:20pm
Replies by: Kare83, desertsun, Anonymous, jennunicorn

I have been on 3 monthly skin checks since December when I had Stage 1 Melanoma removed from my shoulder blade. 

I am the third in my immediate family to get a diagnosis.

I have had a few moles removed now, all benign except for the Melanoma. My doctor knows I honestly don't care about the scars.. I know taking off moles that may be benign won't stop me from getting it again but I sure feel better about removing ones I am worried about just for peace of mind.

However my Doctor won't take any off. I had been to him a few times and he was happy with how everything looked. My husband noticed a mole on my shoulder blade started to change colour, half was dark brown and half was light. I went back to the Dr but he told me to just keep an eye on it. Three months later and half the mole was black and the other half was still light. I went back and although he examined it and said he could see some change, he doubted it was anything sinister and said he didn't want to remove it. I explained that I was uneasy about it, specially because of the quick change and he agreed then, that because it was on my back and hard for me to monitor personally, he would take it off the following week. Then, once removed, he called the next day and said it was Melanoma and I needed wide margins removed.

It's not his fault, I realise. He honestly didn't think it was anything sinister. Though I have two more changing colour that have been worrying me for the last few months and have seen two people about them (my original Dr and another Dr for a second opinion). Both have said the two moles, along with all the others are fine. I practically begged for them to biopsy them both - I really need the peace of mind here.. But both refused.

So the thing is, yes I know the chance of having another primary is higher than the norm, yet it's not all common... Though I don't know what to do now? I honestly don't care about paying for the procedures or having scars - I just need peace of mind. I figure it's better to biopsy or remove them than regret it later, no matter what the chances are.

I'm just not sure who I can see that will do a biopsy now though. It seems most regular doctors like to steer clear of this and let the skin cancer doctors do things?

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Anonymous's picture
Anonymous
Replies 5
Last reply 5/31/2016 - 3:36pm
Replies by: Anonymous, AshleyS, jennunicorn

Hello!!!

My sister was diagnosed with melanoma stage 1a (Breslow 0.6 clark III mitosis <1) at the end of 2014. So far everything seems to be ok. She might be planning to have a baby, but I read once that it is inadvisable, someone can give me some information about this. I still do not want to tell her anything about a possible risk, because for her the melanoma is part of her past, and I do not want to scare her. Someone can advise me what should I do and the risk of getting pregnant? Thank you very much.

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youngann's picture
Replies 5
Last reply 5/31/2016 - 6:38am
Replies by: youngann, Lil0909, Anonymous, laulamb

I'm wondering what the expected recovery time is for SLNB in the armpit. I'm having it done on 6/2 and will be heading out of town 2 days later. I'll be the passenger on a 6 hour road trip and will then be dry-camping in a motorhome for a week whilst working at an outdoor event.

A friend has suggested that I'm out of my mind for trying to do this so soon after surgery. So, for those who have had this procedure done, am I expecting too much of myself? Or do you think this won't be a problem?

Thanks.

http://www.cafepress.com/daybreakdesigns

Home of the original "Crappy Shirt"

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Anonymous's picture
Replies 20
Last reply 5/31/2016 - 2:47pm
Replies by: Anonymous, Bdk2727

I'm really panicking I've had a painless enlarged node on my neck for about 2 weeks and today I shaved my head for summer and noticed this large brown irregular mole I literally can breathe from worry judging by the looks can you please tell me if it's a suspicious lesion? I have no idea if it's changed or been there for a long time.

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WithinMySkin's picture
Replies 15
Last reply 6/7/2016 - 4:58pm

Steroids, that is.

 
I had my second Ipi/Nivo infusion back on the 6th of May, and everything was smooth sailing until about 2 weeks ago. Started with mouth sores (which I'm told by my team is much more common than previously mentioned in the stats) which was annoying, but not a big deal. Never really got the Ipi rash...my black fly bites itch worse than the bumps on my back. But then the diarrhea started, with lots of cramping. Imodium to the rescue there. Then nausea...UGH...the nausea. I couldn't even LOOK at food. I'm down 7 lbs in about a week. Nothing seemed to help with that. They did blood work, and my liver enzymes are 7 times normal, so they finally decided to roid me up. I now feel like I have rejoined the living.
 
So my question: do I continue treatment? Did those who got hit with steroids end their treatment or continue? I was supposed to have my third infusion last week, but we've delayed that due to symptoms, and I have a follow-up on Tuesday, so I'd like to have my questions in order by then. I do have good news that I KNOW it's already been working - the silver dollar sized met in my leg has disappeared totally!! :) While excited, I'm weary of ending or delaying treatment when I've only gotten half the prescribed doses. So continue with steroids and continue treatment? Any insight is greatly appreciated! (And if Ed has any of your fabulous videos, that'd be amazing!)
 
Hope everyone is enjoying this holiday weekend. And a big thank you to all those who have served in the US armed forces. One day of remembrance doesn't give your fallen comrades the recognition they deserve. My thoughts are with you every day, but especially this weekend.
 
Lauren

WithinMySkin

www.Withinmyskin.com

 

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Anonymous's picture
Anonymous
Replies 10
Last reply 5/28/2016 - 6:49pm

I had a huge melonoma removed from my back over 10mm(looked like a med size mole for 15 pus years or more, but suddendly flared up in 3 months to a tumor/ nodular cancer)...SURGEON removed it along with doing a sentinal node biopsy, after working over an hour under my left armpit  they COULD NOT find the sentinal node....

They noticed on a previous x-ray a med size area on my lung and 3 nodules(which was probably from a cold i was just getting over but had for like 4 weeks or more), so they ordered a PET/CT scan to be done fearing it had spread to other organs...Did the pet scan NOTHING lit up anywhere on my body except a small area under the left armpit where they had just done the sugery to find the sentinal node....They pet scan was done two weeks or less after the surgery to find the sentinal node....Now they want to do a axillary node dissection...After looking on the internet it looks like a false reading can happen in the area surgery was done is this true ? i would hate to have this surgery done only to find out the cancer had not spread there......

 

 

 

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