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 1
Last reply 7/28/2015 - 7:08pm
Replies by: DianaD

Hello,

I thought I would give this a try. My finance is who I am writing about, not myseld. He is 22 years old and has moles on his body his entire life. He has had them checked around 6 years ago. Well, recently he has been having night sweats every now and then and he also has a couple "holes" on the sole of his foot. I read online that these could be linked to melanoma.. and since he has so many moles that does not surprise me. He also has developed two moles on his scalp that have caused grey hair to form.. I read that those are nothing to worry about but as his fiance and him only being 22 I am FRIGHTENED. I guess what I am on here asking is... because he had these "spots" on his foot and occasional night sweats is he in danger of having melanoma??? We go to doctor in September but so scared to wait that long.

 

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rabbits68's picture
Replies 3
Last reply 7/28/2015 - 5:50pm
Replies by: rabbits68, Aussielyn, dfeng

3 month scan showed tumor regression in lungs, liver and bone! One has disappeared! I am having a few side effects from the meds. Anyone experienced back pain or joint swelling?  My wbc count is getting low and doctor has mentioned adjusting dosage. I am so thrilled about scan but am scared about wbc level.  Any personal experiences? 

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Scooby123's picture
Replies 7
Last reply 7/28/2015 - 3:52pm
Replies by: Scooby123, Anonymous, dfeng, 273c

Hi everyone hope you are all having a good day. I have completed ippi had itchy, stomach pains bumps here and there but did settle. Now I have finished ippi I have been experiencing pain were tumours are liver especially ,lungs can anyone who had ippi had this after treatment . I did have pain a bit when on treatment but it seemed to move around but now constant. Had scans but results not till 6th august .

scooby123

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Mat's picture
Replies 14
Last reply 7/28/2015 - 1:31pm

Earlier this week I posted that I thought I was having a weird side effect from Keytruda.  I'm having pain behind my left eye and my vision in that eye is "off".  I went to an eye institute which ruled out inflammation in the eye (e.g., uveitis) and my pituitary panel came back mostly normal.  I moved-up a regularly scheduled brain MRI thinking that maybe I had inflammation of the optic nerve (neuritis)--but it turns out that I have a new 15mm brain met that's pressing on my optic nerve.  My last MRI (which was clear) was on June 1st, so--as we know--things can change quickly.  (I've stressed in earlier posts the importance of Stage IV patients receiving routine brain MRIs.)  I've had 2 brain met previously--one in 2013 and one earlier this year.  Both were smaller and in "better" locations and were treated with gamma-knife.  Based on initial discussions, it sounds like this one may not be a candidate for gamma-knife, but rather a proton beam procedure or surgery.  It's unclear based on these discussions the degree to which my vision will be at risk.  I'll know more on Monday.

Of course, dealing with the brain met is only the first order of business.  I'll also get scanned this week, after having now moved up those scans as well.  My last scans while on Keytruda (at ~14 weeks) on June 1st were stable with some minor reduction.  I have one small lung met (less than 1 cm) and several small liver mets (less than 3cm).  I'm now at ~22 weeks.  A treatment decision is likely coming.  Unfortunately, having done BRAF-MEK, ipi and Keytruda, the next step is not obvious. 

I'll report back as I learn more over the next week.  Thanks.

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jvictoria's picture
Replies 13
Last reply 7/28/2015 - 11:38am

Hello all,

Melanoma Stage III, I have already distal thumb amputation and sentinel node which came back with two positive nodules.

I'm currently scheduled for Lymphadenectomy 7/31 but have been told it would be a good idea to get scans (PET/MRI) done before; some doctors are saying do scans before, some say do it after surgery. Doing before would mean 3-4 week postponement of the Lymphadenectomy.

Thoughts?

Juan

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Mrbass's picture
Replies 4
Last reply 7/28/2015 - 10:40am
Replies by: Janner, stars, Mrbass

Hi,

I recently found a mass on the shoulder/arm area had my local surgeon remove it. The path report said it was metastatic melanoma spindle cell type, but there where some unknowns so the slides were sent to The Cleveland Clinic for furthur testing. That report was the same diagnosis.

Then I saw a surgical oncoligist he wants to widen the borders and check the sentinal lymph nodes. But wont be for 3 weeks. Having a pet scan this week. The dr said he wont consider this metastatic until a primary site is found. With 2 path reports saying metastatic melanoma I'm thinking we are acting to passive here.

I asked about a dermatoligist and was told maybe after surgury. The Dr didn't even look me over for the primary, just relying on scans.

Can the report be wrong or is a sure thing I have metastatic spindle cell melanoma?

Thanks,

Matt

 

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Lyric17's picture
Replies 31
Last reply 7/28/2015 - 4:09am

Hi everyone,  my name is Lyric and yes that is my real first name. I am 30 years old and I seem pretty healthy except for an issue I have going on with my index finger nail.

 

About a year ago I noticed a small skinny pale light brown streak on my nail. The line is near the side of the nail and not the middle of my name. It runs from the cuticle to the end of the nail. And to be honest I use to smoke and had quit about a month before I noticed this discoloration of a line on my nail. So when I spotted this I thought it was nothing more than cigarette tar stain to my nail and it would slowly go away since I was smoke free.

 

Six months went by and nothing changed. The small skinny light pale brown streak was in the same spot with no changes. My fiance kept telling me I was worrying over nothing and just to forget it and as you age your body changes. At the moment I went along with what she said but at times in the back of my head I didn't feel right about ignoring it. Kind of like it was my body telling me something or a possible warning. 

 

Finally at about a year I got tired of looking at it and after several hours of non stop looking online the only thing I seen remotely was something called Subungual Melanoma. My fiance did her own research and it's all she could come up with as well. She grew a little worried by now and so did I.

 

Next day I called my local clinic and doctor to get an appointment. I was able to see the doctor about an hour later. So the doctor looked at my index finger nail and was speechless. She said she had no idea in all her years of practice had she seen something like this. I mentioned to her what I found online and she left the room to do some searching. She came back and stated she had no idea and she called making a referral and appointment with a Dermatologist Clinic and Cancer Specialist next town over.

 

I had to wait about a month before I went to see the dermatologist. Once the dermatologist looked at my fingernail she asked if I'd like to have a biopsy done that day or later and of course I chose now. So the dermotologist comes back and ssys she is doing a punch biopsy of my nail and the skin area below the nail which is where melanoma/whatever it is is. She does the punch biopsy and not to much discomfort. 

 

Now I had to wait a couple weeks for the results of my biopsy. If I got a letter in the mail it was benign and if the called me it's malignant. Well today my results came by a phone call. But the RN says the results showed nothing but something is there and we need to figure out the cause of it. She said that this time I will be seeing the head main dermatologist next visit who will performing a deeper biopsy sample of the area. The RN stated they knew it was some type of melanonychia but don't know exactly why or what. So they don't know if it's benign or malignant or nothing. So now I have to do a second biopsy of the same spot and a little deeper. And now i gotta wait another month till my next biopsy. This concerns me a lot and has me extremely worried. My fiance keeps saying things will be alright but that people die young everyday - which this is not very helpful.

 

Can anyone give their thoughts and opinions here? I'd really appreciate it a lot. If you know anything about, anyone who has been through or if you have been through this please let me know more information. I feel lost and kind of like it's a type of cancer that many doctors don't know about. Help please!!!

 

BTW I have recently became a member also of Cancer Compass asking for help and thoughts. The people there have been really nice and I have had a couple replies but I would like to see thoughts and help also from those from melanoma.org site here. Please if you've have had experience, know someone who has or any information please let me know. I have included a couple pics as well of my index finger with the supposed issue. In the photo you will see the light pale brown line near the edge of my nail and you will also see where a recent punch biopsy was performed. As stated above that biopsy came back inconclusive and I have to now go in for a second biopsy which will be deeper. 

I'm a 30 year old white male btw just to give a little idea of my age and race.

I'm very terrified and scared. I have cried almost every day over  and can't imagine dying and leaving my two dogs and two cats. I can't imagine leaving my fiance as well who will not discuss or talk about it all. I have no family to talk to as I was adopted and have not talked with my adopted parents in over 10 years. I don't know my real parents and family so medical history and support is not there. I have no one to really turn to and I'm sorry for asking for help and support. But then again this could all come back benign but from what I've read one benign cases are more common in african american but with caucasian it's very rare and more possibly malignant. Plus the life expectancy is horrible. Help me with information or anything if you can.

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kimgibler's picture
Replies 1
Last reply 7/27/2015 - 5:49pm
Replies by: arthurjedi007

How long until this starts working?  Does anyone have first hand experience?

 

My husband is almost on his 3rd round, plus tafinlar, and showing no signs of getting better.  Lots of pain and tumors getting bigger.

 

 

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Brendan's picture
Replies 16
Last reply 7/27/2015 - 1:28pm

Hi Everyone,

I have been on PD-1 for about 18 months now.  The melanoma has been behaving as my single,defiant, 5mm met in my left lung has been stable for over a year.  I have recently had a tingling sensation in my left leg and sometimes my left foot seems to be 'heavy' when I walk to the bathroom in the middle of the night (which is all the time!!).  I had a seizure in June and my keppra was upped to 2000 mg/daily.

Anyone experience have a similar sensation?

Thanks!

Brendan

 

 

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Anonymous's picture
Anonymous
Replies 5
Last reply 7/26/2015 - 4:21pm
Replies by: Anonymous, mrsaxde, jamieth29, SABKLYN

Can anyone shed some light on what will happen in my first meeting wtih the surgical oncologist? What will he do in that appointment? 

 

Thanks!

Christine P. 

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kspfjsaf's picture
Replies 5
Last reply 7/26/2015 - 4:13pm
Replies by: DZnDef, Anonymous, 273c, Janner, stars

 

My wife was just diagnosed a few weeks ago, and we had the wide area excision and SLNB last week.  I know we are so lucky to have everything come back negative.    The oncologist is saying that at this point the standard of care is just to come back every 3 months and he'll do an exam, feel the lymph nodes, ask how she's doing, and thats about it.   We just have to hope that she's not in the 10-20% where she gets hit with a stage 4 metastasis down the road.     He doesn't even want to think about doing a PET scan down the road because he says the chances of getting a false positive (and the resulting surgeries and complications from it) are too high.

I guess we're just not feeling too happy about this course of action, although I understand from doing a lot of reading it does seem to be the norm.   Although the mitosis rate is 2, the depth was just barely over 1mm (1.12).  The SNLB tracer localization was supposed to be very strong, so the surgeon feels very good that we got the 3 lymph nodes that the cancer would have spread to.  

Is it just crazy to try to push for some of the new drugs as adjuvant therapy (I know we'd have to pay out of pocket, yervoy is ~140k and the PD-1 inhibitors are more?).    But setting aside the monetary cost, the oncologist seemed to think that the toxicity risk of the new drugs outweighs any positive benefit we might get.  However I feel like it has to be a lot easier to nip any microtumors in the bud right now rather than wait until they are so large they will be caught be a physical exam.  Although I guess if your system/cancer reacts well to the new drugs, it will react when the tumor is large, and you don't necessarily need to try to get a jump on the process?

Interferon doesn't seem like a great option at all (although it did work for my nephew at stage 3, 8 years disease free now!).   Neither are the vaccines from the data I've seen.

Should I at least look at getting her to another melanoma center for a 2nd opinion and push for the PET scan in a few months? 

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_Paul_'s picture
Replies 17
Last reply 7/25/2015 - 11:26pm

Because I got mine today as well. Pretty good results I think. This was a 6 month scan and the bottom line was that there was no progression. And in fact the new tumor I had growing in my shoulder is no longer visible.

All the tumors in my liver and lungs are still there, but they are all 1cm diameter or smaller. And the one tumor that was zapped with SRS and expanded (consistent with inflammation from the radiation and scar tissue) has now begin to shrink (consistent with a decrease in inflammation).

I would love to be NED, but I will take no progression!

- Paul

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mbd's picture
Replies 2
Last reply 7/25/2015 - 5:14pm
Replies by: stars, Janner

Hi,

I am away for the month and have discovered what may be another melanoma on my leg. It is right near where the first two occurred.(1st one-2013, 2ndone-May of 2015) It looks like a blood blister and I was hoping that it was- but it has not changed since I first noticed it 10 days ago.

I have an appt w/ my dermotologist on 8/4 but am wondering whether I should get it checked beforehand at a local clinic near where I am staying. Input appreciated.

Thanks

MBD

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Anonymous's picture
Anonymous
Replies 1
Last reply 7/25/2015 - 2:42pm
Replies by: Anonymous

My Dr said they changed the upper limit of the normal range from 100 NG/ML to 50 NG/ML, due to Increased risk of hypercalciuria.  What is the recommended level we really be at?

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Beezer's picture
Replies 7
Last reply 7/25/2015 - 8:45am

Just one hour ago I got the news from my brother in law, that my darling sisters fight is coming to an end, she had only one keytruda infusion but had deteriorated so bad in the past two weeks that after scanning her a few hours ago they informed my brother in law that she is too far gone and there is no point with the keytruda any longer as my darling little lamb had lost her battle and now must go back home to die, as I write these lines I am utterly shattered I really thought this drug would help extend her life it's even harder for me right now as she lived in Austrslia and I'm in Ireland, I had hoped so much to go to see her soon but my husband was hospitalised with a pericardial effusion and he's not well so I am nursing him and feel so so useless no being able to hold my sister and tell her how much I love her Oh God I'm so sorry for my emotional outburst at the moment but I'm sitting here in the dark and am torn in half. If anybody is reading this and knows anything about how long she might have I could prepare the rest of our family tomorrow as we all live here. She has lost the use of her hand and legs and is sleeping a lot and her husband ( my hero) told me that she really does not know what's happening as her cognitive awareness gone too, he thinks this is a little blessing as she very happy in her own little unaware state Thankyou for reading 

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