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.

Expand/ Collapse Topic
 
Replies By
View Topic
Anonymous's picture
Replies 7
Last reply 7/28/2015 - 11:37pm

My husband was diagnosed last month with stage IV BRAF melenoma. No primay site found, but it is in his duodenum and may have some spots on the mesentery of the small bowel.  He had one lymph node removed from  under his left arm that was also BRAF melanoma.  He has just started on his chemo meds. He is taking Tafinlar + Mekinist.  3 days in he is doing well with it and so far has a wonderful appetite.  Any one with any information or experiences with these two drugs?

Login or register to post replies.

michaelinsocal's picture
Replies 5
Last reply 7/28/2015 - 9:20pm

Hi all. I have been diagnosed with multiple nodules on my thryriod. Nothing has been determined to be cancerous. I am seeking comments to those who have had a similar diagnosis, course of action and the insuing results.

A little background....

Diagnosed with stage 3a spindle cell melanoma on my outer left foot, just below the ankle bone. Had a WLR with SNB in Dec, 2013. One node positive with micro mets, left groin lyphodectomy in April 2014. Removed nodes were all negative. Interferon for 1yr. I have a rotating schedule of Dr appts every 3 months (surgical oncologist, immunotherapy Oncologist and dermologist).

The nodules were first detected by my only pet scan, done in Jan 2014. My surgical ONC ordered a ultrasound April 2015 which as many as 5-7 nodules, the largest bring 2.1. They don't appear to be growing and neither Dr can feel them.

Sugical ONC ordered blood work, all normal (no hypo or hyper) but my TWC? Was twice normal. From what I read, a high count isn't conclusive of cancer. The Dr wants to skip doing further scans or biopsy because as he put it (my throat would be a pin pad from all the poked) and wants to go straight to surgery.

I have a deliberating problem with that. My body has already been through a lot. Another surgery for something that *may* be cancerous is doesn't sit well. My regular ONC agrees and had ordered a follow up ultrasound in Sept along with my second set of scans (no pet this time, CT and Chest) to determine further growth, if any, in my thyroid. 

Just curious if any else has been through this and and what course of action you took.

Any helpful advice is appreciated.

Mike in SoCal

 

Login or register to post replies.

mkirkland's picture
Replies 10
Last reply 7/28/2015 - 7:18pm
Replies by: DianaD, Janner, kathycmc, stars, mkirkland, Anonymous

My story starts out kind of strange... a few months ago my fiance and I were moving around some furniture when I noticed a flat mole/freckle on his side near the ribs that had started changing colors half way through. I stayed on him to make an apt at his dermatologist and thank god he did. He was diagnosed with stage 1 superficial melanoma. It measured I believe 0.2 mm. We had an apt with the oncologist surgeon and they cut a pretty cut chunk. Well, since then he has been on me to go get this mole on top of my right foot looked at. Well, I finally went in and this week I received my diagnosis... stage 2 malignant nodular melanoma. I was floored when I received this report. I got a copy of my path report and on the report it says it cannot rule out metastasis. My apt w/ the oncologist is not for almost TWO WEEKS. So of course I am curious about others with this diagnosis and how was surgery/treatments? I am scared & nervous but at the same time I have faith that God will see me through whatever course of action we must take. Any feedback would be greatly appreciated!    

Login or register to post replies.

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.

 

Login or register to post replies.

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? 

Login or register to post replies.

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

Login or register to post replies.

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.

Login or register to post replies.

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.

 

 

Login or register to post replies.

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

 

 

Login or register to post replies.

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. 

Login or register to post replies.

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? 

Login or register to post replies.

_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

Login or register to post replies.

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

Login or register to post replies.

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?

Login or register to post replies.

Pages