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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gregor913's picture
Replies 12
Last reply 2/6/2016 - 6:06pm

Hey everyone so I finished my second dosing of ippi and have my 3rd scheduled for Feb 15. Right now my oncologist has me scheduled for 4 doses total of the 10mg/kg. If everything goes well after all 4 doses here is my next question. I was reading the yervoy website for preventive care and it says that you should have the 4 initial doses then every 12 weeks for 3 years maintenance doses.

Was just wondering the people who are taking ippi right now if there onc has them scheduled for the maintenance doses because mine does not. Do you need the maintenance doses?

thanks Greg

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Anonymous's picture
Anonymous
Replies 15
Last reply 2/7/2016 - 4:47am

What would be a worse prognosis for stage 3. Having a ulcerated melanoma with micromets or having a macro node without ulceration. Just curious anon

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Anonymous's picture
Anonymous
Replies 0

Join 2000 patients and caregivers for a great/fun event!  Go to  http://melanomainternational.org/

 
 

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Tessie64's picture
Replies 4
Last reply 2/9/2016 - 2:45pm
Replies by: ldub, ashley_K, Janner

I had a biopsy on my toe about six weeks ago, which came back as moderately atypical. I actually go tomorrow for further excision. But over the last 2 days, there has been a black growth developing on the punch biopsy sight. It's already as large as the original mole (5 mm). Could previously missed cells develop that quickly to melanoma?

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Totally Blessed's picture
Replies 2
Last reply 2/3/2016 - 12:30am
Replies by: ldub, Totally Blessed

My husband was diagnosed a couple months back with stage 1b Nodular Melanoma on his right shoulder. No ulceration, no Mitotic rate, breslow depth 1.4 mm, Clarks level 3/4. WLE and sentinel node scheduled for Feb 11th.

My question is this;  for the past couple months he's been experiencing pain in the same shoulder. We have just assumed it's related to an 'over used, 65 year old' shoulder.  We are with a Melanoma specialist in Ann Arbor. My husband has not shared this pain with his Dr. .  We don't want to look for any more problems but we don't want to miss any either. 

Should we be getting this addresses before his surgery on the 11th? By the way, there doesn't seem to be any swelling, no node swelling, just pain.

Help?

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My husband was diagnosed a couple months back with stage 1b Nodular Melanoma on his right shoulder. No ulceration, no Mitotic rate, breslow depth 1.4 mm, Clarks level 3/4. WLE and sentinel node scheduled for Feb 11th.

My question is this;  for the past couple months he's been experiencing pain in the same shoulder. We have just assumed it's related to an 'over used, 65 year old' shoulder.  We are with a Melanoma specialist in Ann Arbor. My husband has not shared this pain with his Dr. .  We don't want to look for any more problems but we don't want to miss any either. 

Should we be getting this addresses before his surgery on the 11th? By the way, there doesn't seem to be any swelling, no node swelling, just pain.

Help?

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Nanners10's picture
Replies 3
Last reply 2/2/2016 - 7:02pm
Replies by: WithinMySkin, Anonymous, Nanners10

Hi all,

Just looking for any advice that anyone can give. I had a CT scan (was experiencing some chest pain) and the results were so obscure. My dr. wants to follow up with a pet scan or another CT scan in a couple of months to see the difference. He didn't really go into details as to what causes (other than melanoma) these items and I was wondering if anyone has run into these before and if they turned out to be something or nothing. I know that maybe I am not giving enough info but don't have a copy of my scan yet but am stressing out. The terminology in question is:

-thickening of the pleural wall on the right side 

-abdominal stranding between the liver and the kidney

I haven't ever even heard of abdominal stranding and don't know how or what it relates to. Can't seem to find much on a google search either.

They are both listed as incidental findings as the scan did not include the whole abdominal/pelvic area it was mainly a scan on the lungs.

Any thoughts would be greatly appreciated. I know that another test is the only definitive way to determine what's going on but we all spend enough time obsessing over our reports that I thought this would be worth a try.

Thanks,

Nancy

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MoiraM's picture
Replies 15
Last reply 2/7/2016 - 9:17am

I went down the Ipi route for treatment of my Stage III melanoma. Good news is I am a responder and, six months later, the tumours in my lymph nodes have shrunk so that they can no longer be distinguished using a CT scan. (Bad news is that I have ended up with damage to my anterior pituitary gland that is probably permanent.)

My specialist has shown me a graph that appears to show that if I make it to three years then I am likely to make it to ten but she cannot answer my question, which is What proportion of 'Ipi responders' make it to the three year milestone without a reoccurence?

Has anyone got an answer to this question? Or any other relevant information (maybe like a link to a useful research paper).

Stage 3C Ipi/Yervoy responder with phobia of doctors/hospitals

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JackieH's picture
Replies 3
Last reply 2/7/2016 - 2:11am
Replies by: jae p, mdoh, WithinMySkin

Every year on the anniversary of my first diagnosis I revisit this site where I used to scan all messages looking for posts that gave me hope. So I write this esp. for newbies  to remind people there are many of us who no longer visit this website.  My  daughter was 9 when I was diagnosed with my first melanoma (stage  2b) I was diagnosed w my second primary 2 yrs later. My daughter is now a young woman of 23. I hope my message might help give some comfort to others.    

Jackie

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gcooperbl's picture
Replies 5
Last reply 2/3/2016 - 8:57pm

Hi all

 

just a bit of advice needed, my dad had a turn / dizzy spell / potential seizure he is on lower dose of steroids and has brain mets. Will the doctor slow down his immunotherapy? He got first cycle last week and not to today was fine. Due to get his second on the 11th feb.....anyone been through this? Any positive news for brain mets and pembro? 

 

G

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Anonymous's picture
Anonymous
Replies 6
Last reply 2/4/2016 - 4:45pm
Replies by: Anonymous, AllysonRuth, Janner, melj

I had a thin stage 1 melanoma removed with wide local excision and negative sentinel node biopsy 9 years ago.  Had a recent brown spot develop right along the margin of my scar- and its melanoma in situ.

I am 35 now, with three kids under four.  I am having a very hard time coping with the fear of metastatic disease and death.  I have to wait another week to meet with my dermatologist.  Anyone out there have a similar experience?

I am so confused how my tumor could come back as melanoma in situ, how it took so long to recur locally.  From speaking to the dermatologist on the phone, he thinks it may be a new primary that "just happened to develop along my scar", but I don't know if I can buy that.  He also said that, if it is a second primary, I am now at a 9 times risk for developing another.

I don't know if they can actually determine pathologically whether it's a recurrence or a new primary, or if they can somehow tell?  Because right now I'm petrified of the implications of a local recurrence (if it is still living in my skin, won't it eventually keep coming back until it metastasizes), and I'm also worried I'm at 9 times risk of another because it might be a new primary.

 

 

 

 

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Anonymous's picture
Anonymous
Replies 11
Last reply 2/2/2016 - 4:14am
Replies by: Scooby123, melj, gcooperbl

After reading posts for a few months and finding many helpful, I thought I should contribute, hence the post. I'm a Brit living in the UK, my first melanoma was in 1995. A year later, following a resection of lymph node mets in my groin I joined a trial of Cancervax at JWCI in Santa Monica. Although overall the trial was unsuccessful, it seemed to work for me. I was NED for 18 years before presenting in December 2014 with two new primaries and a local recurrence on my flank. During 2015 I had 7 subcutaneous mets excised at the Royal Marsden Hospial in London. My CT scan earlier this month showed progression to lymph nodes in my neck and chest as well as a couple more subcutaneous mets. On January 20th I started on Keytruda. The first week I had negligible side effects but the last few days I've had headaches, fatigue and night sweats. All manageable. I had the option of Yervoy and Opdivo but chose Keytruda because I have a low tumour burden and normal ldh. The more severe side effects of ipi put me off the combo therapy but if I don't respond to Keytruda that could be the next step. 

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jmm1052's picture
Replies 17
Last reply 2/4/2016 - 8:41pm

I have read with great interest the topic on IIIa using IPI- my husband will start the 10g dose in 6 weeks. We have been told that at the moment there is no other treatment than interferon and no trials for his level. The possible side effects are pretty much zero which is phenomenal- if you do get any you are to report them immediately to the doctor as any of them can be life threatening. Since this was just approved in Dec 2015 I realize not many have had experience with it yet but I'd really like to hear from anyone who has actually done any treatments   My husband has Stage IIIb with no idea where it first presented. He felt a swelling in right groin area and it turned out to be melanoma- very large 5 cm and was removed along with all of the nodes in the area this month. We are waiting for it to heal before treatment begins. At the moment he is NED but we are seeing issues with fluid buildup from the complete dissection of the nodes in that area. Has anyone had experience with any of this? 

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grahamtosh's picture
Replies 10
Last reply 2/1/2016 - 2:48am
Replies by: Anonymous, grahamtosh, Janner

Hi  All

 

i have a history of 2 melanoma on my legs - December 2014 excised . 

Yesterday my dermatologist removed 17 suspicious looking Nevi after looking at them with Mole Mate . I have been told by lots of people that this is not common practice ? when questioned , My dermatologist refers to a ' film' that masks her seeing melanoma clearly on my body that is why she just excises all  . Does anyone know about this type of 'film ' pls , what is the medical term / explanation . 

 

 . I got second opinion ,they said remove only 5 out of the 17. He said he only excises what looks worrying to the naked eye , he said suspected melanoma are very obvious and you see them with the naked eye / dermis cope very easily ! I then went back to original Dermo who wants to remove the 17 and asked her to explain. 

she said all 17 showed ABCD but not E.  With smudgy outlines . She said she finds my skin very difficult to read as there is a ' film ' which hinders masks seeing the melanoma , so she suspects them all ??? Is that possible . Does anyone have any medical terminology reference of this ? ? 

 

She has scared me sufficiently so I then went ahead and she removed all 17 yesterday wide excision and I am now awaiting biopsy results . 

 

thabks very much 

 

 

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Replies by: andie1059, jamieth29

Hi all,

I'm new this forum so I appreciate your support and patience! I just found out that my cousin’s husband has metastatic stage IV melanoma. It’s spread to the superior part of his left lung, but nowhere else. He’s 32, and from what I've seen, he’s an amazing father and overall guy. His wife is currently pregant, complicating things further. 

He is Romanian, as is most of my family. I haven’t lived there for many years and I don’t know the health care system well, but it doesn’t look very promising. According to Romanian law, cancer patients have the right to receive free medication, but drugs are very hard to find. They can be bought abroad, but this is a solution only for people who can afford it.

 

It sounds like opdivo or yervoy (or a combination of this and other treatments) are the best chances he has right now, which just can’t be found in Romania. Out of pocket, these drugs cost an obscene amount of money -- which no one in my family has. Does anyone have any suggestions or new avenues to consider? I have no idea how payment for drugs or how loans work in Europe.

 

I've done some intiial research into clinical trials in the US and in Europe, and I was wondering if anyone here has any more information on them? From my cursory research, it seems that clinical trials in the US are open to non-US citizens, although I imagine this would be a barrier regardless. I live next to a major cancer center in the US that is recruting patients for a trial for his type of cancer. If there was a chance he could be accepted into one of these trials, I could take him to appointments and he could stay with me. 

 

It sounds like health visas can be a little tricky but manageable if you have the logistics figured out (a citizen sponsoring you and proving that you have the money to afford your stay, etc.). My family could afford to fly him out here and cover the basic costs of his care, but obviously can't afford the whole treatment itself.  

 

I guess the real question I have is about timing. How long is the process to get into a clinical trial? I assume that he doesn't have a ton of time, but it also doesn't seem like there is an alternative in Romania. Could anyone describe what the evaluation process is and generally how difficult it is to get accepted? I'm planning on calling some of these trials on Monday to see if I can find out more. 

 

I've never had an experience with cancer before, and I'm just really down. I would appreciate any thoughts from people who know more about this type of cancer, or just have any ideas at all. Thanks so much.

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