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
jms0104's picture
Replies 6
Last reply 11/13/2016 - 7:32pm
Replies by: jms0104, Anonymous, Janner

I know my stage of 1a makes me very lucky, but I'm anxious nonetheless.  Dx last week with a suspicious mole on my torso, punch biopsy, stage 1a, .45mm, no ulceration.  I also have MS and have been taking an immunomodulator for the past 11 years, that I am strongly considering stopping.  Will I need a node biopsy for 1a?  Reading lots of horror stories with other Stage 1ers coming back at stage 4 much later down the road.  

Login or register to post replies.

Aubreesmommy41's picture
Replies 5
Last reply 11/13/2016 - 5:43am
Replies by: Anonymous, Aubreesmommy41

Went for my 6 month skin check and he did 3 punch biopsies.. one in my chest, one of the backside of my right arm and one on my back.. he said he didn't think they are melanoma but may be dysplastic nevis.. I've had 3 of those already along with a stage 1 melanoma on my left arm.. I really don't have a question just wanted to vent.. everyone on this board is having their own varying degrees of battle with melanoma.. I'm 6 months out and wondering when I can breathe and be happy again.. I'm thankful I only had a stage 1 and I'm praying for everyone on here.. but geez the anxiety is brutal!!

Login or register to post replies.

slouttit's picture
Replies 15
Last reply 11/12/2016 - 10:52pm

I was diagnosed as stage IIIa in early 2016 with a 1.5MM primary on the ear tip, no ulceration, 4/sq mm mitatic rate.  After a removal and SNLB, 2 of 5 nodes had micrometatasis (.65 and .7mm).  I then had a CNLD of the neck and all 50+ nodes were clear. 

I entered the interferon/pembro clinical trial and drew the interferon arm.  I only lasted one week on interferon but am still being watched closely.  My July CT and PetScan came back clear.  My next CT is scheduled for Nov 17. I have not had an MRI. 

As Ipi is not yet approved for stage III in Canada, I'm wondering if it worth my while to travel to Seattle for treatment with IPI?  Any thoughts?  iF so, who should I see in Seattle?

Also, I've been having mild headaches for the past two months.  At my last appointment with my oncologist he thought this was not a problem as I would find the headaches getting worse.  However, the headaches keep coming. I will see my oncologist next week and will ask if I should have a brain MRI.  I also will see my eye doctor as  hopefully the headaches are related to vision changes.  Otherwise, I feel fine. 

Thanks for your support and advice. 

Stacie

 

Login or register to post replies.

Allie's picture
Replies 11
Last reply 11/12/2016 - 10:16pm
Replies by: Allie, Mat, mjanssentx, Ed Williams, debwray, Anonymous

I've had 8 rounds of Keytruda and started having headaches and vision issues. I saw the eye doctor and had an MRI a couple of months ago, both showed I was clear and looked healthy.  Lately I've had tracers, lines and spots at random moments during the day. Has anyone had this? My next infusion is Monday. Thank you for any testimonies or thoughts. -Allie

Login or register to post replies.

lmccann2016's picture
Replies 4
Last reply 11/12/2016 - 4:51pm

Had wle and neck disection to left side of neck removal of all nodes that side. I am getting really concerned it's been 5 days swelling hasn't reduced and when u touched the swollen area it is hard. Has anyone had this recently and help me not worry. No fever. Just extremes tightness and swelling

Lisa McCann

Login or register to post replies.

WallyE's picture
Replies 2
Last reply 11/12/2016 - 10:30am
Replies by: WallyE, debwray

Please can someone explain to me what the following means as per an MRI scan done on 2/11/16:.

Small subcentimeter aortopulmonary lymph nodes measuring 5 to 6 mm

Small right tracheobronchial lymph node measuring 4 mm

A calcified grunuloma is noted in within the left lung base (the middle lobe of my right lung was resected)

A wedge shaped hypo density noted with the lower pole of the right kidney represents a small cyst measuring 7 mm

A simple cyst is noted in the upper pole of the right kidney measuring 5 mm

There is a rim enhancing heterogeneous hypo dense periphery enhancing lesion measuring 44 x 34 x 38 mm (APxTRVxCC) related to the subfundal region,and greater curvature of the stomach inseparable from and superior to the tail of the pancreas. This is suggestive of recurrent disease.

I thought I was fast approaching permanent NED when I had 4 years of NED last year - then Mets to my stomach (total stomach removal underwent in Nov 2015) and now this new thing,

What does this all mean? The doctors appear to be coy in telling me at this stage - they are going to discuss the way forward at a meeting on Tuesday 8/11 and will contact me on Friday 11/11.

Could this be Melanoma Metastases of the Pancreas?

Thanks all for a wonderful forum for discussion,

Wally

One day at a time.

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 5
Last reply 11/11/2016 - 4:16pm
Replies by: Anonymous, Toby0987

I was able to take a brighter picture of the mole from previous topic

https://imageshack.com/i/pnfMAIiWp

Just wondered what if anyone had any thoughts, if it looks serious, if i need a biopsy or if it even is a mole.

Login or register to post replies.

wayward's picture
Replies 2
Last reply 11/10/2016 - 8:25pm
Replies by: wayward, Janner

My wife had noticed an abnomal spot on my back and asked me to goto the doctor I went to my GP doctor and she referred me to a dermatologist. The dermatologist did a biopsy and sent it to the lab and the results was that they found what thay called suspicious cells that could be precancerous. The dermatologist cut out that area along with a margin as a precaution. When they sent that to the lab the results was what he called stage 2 inside melanoma. He described the thickness as three sheets of paper and I'm not sure what that translates to in thickness. He said what happened to me was rare but does happen sometimes. He cut a larger area for a wider margin and the lab results was clear. I did have him do a full body scan and he did a bioposy of a mole but haven't got got the results yet. I will get the stiches out in a few days. I have a follow up every six months for the next two years at least.

The initial diagnosis was very scary but I do feel much better now.

Login or register to post replies.

snow white's picture
Replies 6
Last reply 11/10/2016 - 10:59am

Well...my Dad is finally home.  He had his 1st dose of NIVO exactly 1 week ago.  He did fine, he said it took 1 hour.  Not much in the way of side effects, he said he felt slight flu like symptoms but not bad at all. He will go 1 week from today for his 2nd infusion.

When I went up to see him yesterday, he was very weak and tired.  He said he didn't sleep well.  He seems very tired, his color is off, he is not himself, kind of hunched over etc.  It scared me.  I came back down to my house and just cried. I am trying so hard to be strong, but it just kills me to see him this way. So far, I have been able to be strong and positive in front of him.  I want to push him a bit and get him up and walking around more, but I am not sure how hard I can push.  What scares me the most is that I know we have a very long road ahead of us and I am having a hard time thinking about anything else but him.  I know I have to be able to live my life with my family, but its so hard not to be focused all of the time on him. Funny thing is, he wants me to keep doing my "normal" rountine, but sometimes I fell like I am betraying him for laughing and having fun.   Ugh!

Sorry for rambling so much, I guess I needed to get this off of my chest and talk to people that understand.

I hope you are all doing well not matter what stage of this battle you are in.  HANG IN THERE!!!!!!

XO

 

Jennifer

Login or register to post replies.

laulamb's picture
Replies 7
Last reply 11/10/2016 - 10:16am

Hello everyone,

Looking for any advice, April 2016 diagnosed Stage 3a, had 4 infusions of ipi at 3mg.  Just had 6 month CT scan and results came back with "indeterminate 4 mm left lower lobe pulmonary nodule".  I have only talked to the Dr through email but she has said what they are describing are normal variations.  I'm not buying that though, could this be melanoma?  I am really in a panic right now.  Any opinions are very much welcome! 

Thanks,

Laura 

Login or register to post replies.

Polymath's picture
Replies 20
Last reply 11/9/2016 - 11:55pm

I normally keep my cool regarding my battle, but last night I must say the demons were running amok.  PET/CT results appear to show my 12-month run on ipi-nivo (with radiation), which provided some improvement and/or stability has come to an end.  My main problem is the splenetic masses.  A pair of orange sized tumors that have more or less merged into a very large, cantaloupe sized mass engulfing my spleen.  I knew things were not going well as I began to notice my ribcage being being pushed outward, and the invasion into the stomach area which has caused various appetite and discomfort issues.  OK, that's the venting part.  Now it's decision time.  I have looked into radiation again and determined the potential collateral damage to GI tract is very risky, but still under consideration.  Surgery to remove entire spleen is an obvious choice but both these treatments carry risk and potential long-term side-effects.  Ideally, immunotherapy would defeat this monster, and my doc has me pegged for a trial of IDO inhibitor combined with anti PD-L1 which sounds really good, but does not begin for several months.  But time is running out and the spleen issue is causing stresses on other systems that could cause massive internal bleeding and risk death.  So, anyone who had spleen removed?  Melanoma in spleen is unusual but somebody must have dealt with it.  I'd love to hear from you.  Radiation?  Or any luck with drug therapies defeating unusually large solid tumors?  Please chime in.  Best to you all in the battle.

Gary

 

Login or register to post replies.

landlover's picture
Replies 7
Last reply 11/9/2016 - 10:48pm

Yesterday I received my PET CT results from U of M and although I do not know the FDG uptake ( I was at work when Dr. Lao called me and a little thrown off), the 3 lung nodules all had uptake and Dr. Lao finally admitted that he thinks that they are metastisis and wants a biopsy.  Scarily he said that a portion of my esophagus also lit up but that it could be just inflammation?  He had already talked to interventional radiology and they declined to do a needle biopsy so he wants to schedule me for a wedge resection.  I have read others posts about that procedure and I feel ok about it.

I imagine that I will meet with onc after the biopsy results and if positive will make treatment decisions.  In a weird way I am glad that I finally will be able to DO SOMETHING about this invader in my body other than just trying to be healthy and keep on keeping on (and of course the neck dissection..)

I am nervous, I am confused but I ahve here to work it all out and for that I am thankful.

Peggy

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 3
Last reply 11/9/2016 - 10:22pm
Replies by: Lhawkins, Whyland1, Cathy M

This is a very important post. I lost my husband to leptomeningeal disease from melanoma last month. I am looking to help someone truly in need of tafinlar and mekinist. It can save lives, it just couldn't for my husband due to how his disease progressed. I have meds left and I am not just throwing them away. Help me everyone to help someone else.

Please respond if you know of anyone.

 

Login or register to post replies.

lmccann2016's picture
Replies 4
Last reply 11/9/2016 - 5:10pm
Replies by: lmccann2016, SOLE, debwray

HI everyone

I'm home and best rest had my WLE and neck dissection Nov 4th. Drain tube came out today recovering good.

Doctor talk to my husband after surgery I won't talk or see doctor until Nov 17th hope path report back by then. Anyhow he said I have a great chance of beating this surgery was success and I won't need radiation or chemo however will require immunotherapy which will be discussed on final path report.

One day at a time... just thought I would follow up and say thank you to all for ur support and crossing fingers it was just one lymph node and not more than that as we knew one was positive from fine needle.

Feeling ok tired no energy and in a lot of pain but nothing meds and rest can't help with. This wasn't as bad considering I had pregnancy worst then this surgery. The surgery was very comprehensive but I had a great doctor who is actually chief of oncology so I fell confident I am in good hands and which treatment is suggested be what I need to fight this demon away.

Much love from Canada Lisa xo

Lisa McCann

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 1
Last reply 11/9/2016 - 4:54pm
Replies by: debwray

Does anyone have any info on maxillectomy?  Diagnosed stage 4 melanoma back in 2014.  Mel spread to sinus cavity and upper maxillary.  Done the interefron, IL-2, Yervoy & Nivo.  Currently in a genetic clinical study.  Showing some improvement but not at the point we had hoped to be by now.  Dr. says to keep moving forward with trail as he feels we're moving in the right direction.  The hope here is for tumor in upper maxillary to get small enough to have surgery and a maxillary obturator to be done.  From what I'm ready about this procedure scares me to say the least.  I'm having issues with the maxillary area and in constant discomfort.  My feeling has always been to get the cancer out, but again, this is such a horrifying thought!  Please, any insight is much appreciated. 

Login or register to post replies.

Pages