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
Roxy1453's picture
Replies 2
Last reply 10/1/2013 - 3:26am
Replies by: JerryfromFauq, JoshF

I'm sorry I haven't gotten back with the results of my talk about my biopsy results. It was in the middle of the website changing and I was having trouble getting on.

My Dr was sure this spot in my lung was Mel. He pulled up my tests and was comparing them to the previous ones. I have had a spot behind my knee that couldn't be removed. It has shown that it was decreasing in size for quite awhile. But now he was seeing that it is now showing less intense, which it had not done before.

He thinks that maybe the 2 doses of IPI I have had have taught my immune system to recognize the Mel and fight it! He thinks I'm now fighting this beast on my own!! Now I read, yesterday, about exactly this happening with people who have had IPI.

I go back for another CT scan Oct 11 and if the spot in my lung has grown, he's taking it out to find out what it is and this whole story is out the window.

I am so excited but yet not 100% sure I can trust any of this!!

"I can do all things through Christ who strengthens me." Philippians 4:13

Login or register to post replies.

Anonymous's picture
Replies 10
Last reply 12/16/2013 - 7:06pm
Replies by: natasha, Anonymous, smurph226, Ktmay, Janner, casagrayson

Hi, i had a mole removed from my thigh and have been told it was stage 1a melanoma and only 0.2mm. I realise as things go I'm very lucky. I am due to have a WLE in a weeks time and I'm ok with that. What I am worried about is my future. As a sun worshipped, I realise that has to stop but will I still be ok in the sun covered up with sun block. I've only told a few people about this and they seem to think my mole is gone so that's it all sorted. I don't feel like that and I'm quiet emotional and not sleeping very well. I understand I'm low risk but do statistics mean no re occurrence? I'm sorry to share my worries with you when a lot of you are in a worse place than me.

Login or register to post replies.

Charlie S's picture
Replies 4
Last reply 9/30/2013 - 7:07pm
Replies by: MarieM, Eileen L, Janner, mike_nj

There just aren't enough words to express my sadness about the death of Dian.

Here is her obituary in the Spokane newspaper http://www.legacy.com/obituaries/spokesman/obituary.aspx?n=dian-l-newell&pid=167204034#fbLoggedOut

 

Here is a link  to her band "Dead Fiddlers Society".  Dian was a marvelous musician.

http://www.deadfiddlerssociety.com/

Also see some pictures of Dian and Bob at the 2006 MPIP Bash in Dallas

http://melasuckanoma.com/

Lastly a video of Dian doing what she loved.........making beautiful music in beautiful surroundings

http://www.youtube.com/watch?v=26IuTcIVYFY

You shall be missed Dian, you shall be missed.

Cheers,

Charlie S

Login or register to post replies.

Rocco's picture
Replies 1
Last reply 9/29/2013 - 4:09pm
Replies by: MaryD

I experienced side effects of the eye while on Ipi trial (10MG/KG compassionate use) way back in 2009, and just this year was diagnosed with thryoid issue, Graves Disease and very early Glaucoma.  Wondering if anyone who had the same strength dose of Ipi while on trial have experienced eye issues since stopping?

- Just Curious

-Rocco

Luke 1:37

Login or register to post replies.

cindersma2's picture
Replies 3
Last reply 9/30/2013 - 8:43pm

hi, i just got back node results clear...yay no more surgeries right now.  because my spot was over 2 they want me to be put on interferon for a year or dr.slingluffs clinical trials(shots). i was wondering if i could get some real opinions on pros and cons of both.

Login or register to post replies.

terihenry's picture
Replies 2
Last reply 9/30/2013 - 11:38am
Replies by: SteveH230, BrianP

My husband was diagnosed with Stage 4 Metastic Melanoma (in ther liver).  He was BRAF negative but had 4 Yervoy treatments with no negative reactions - slowed the disease.  DTIC was not good and had no benefit.  We'd hoped to get him on PD1 so applied/accepted for a clinical trial - but we're randomized into the chemo arm (not DTIC as he's already been treated with that) but am still looking for PD1 opportunities fo rhim (or anything else that can treat the cancer successfully and/or buy us some time.  I'd heard the there were PD1 options in paliative care.  Does anyone have any info on that?

Thank you.

Login or register to post replies.

Anonymous's picture
Replies 1
Last reply 9/30/2013 - 11:15am
Replies by: Sherron

Miles Against Melanoma North TexasLewsiville, Texas · Non-Profit Organization · 364 like this

 

Sign up and Register for the walk it takes a village to raise awareness and raise funds to  raise awareness,-hope and new treatment available.

 

Melanoma Fighter you can find all info on facebook or active.

Login or register to post replies.

JoshF's picture
Replies 8
Last reply 10/3/2013 - 10:59pm

HI All-

So my surgical oncologist from Northwestern Memorial Hosp called me this morning with results of CT Scan on chest that was ordered due to hyper metabolic activity in mid lobe of right lung found on PET scan. He cancelled surgery as wants a biopsy of nodule in lung which measured 9mm. He said he would be remiss to do surgery as I would immeadiately start some type of systemic treatment if biopsy comes back positive for mel. I got impression that's what he is thinking. He said you could have some type of infection which made PET light up and so on. That being said I've had numerous CT Scans which show nothing with the latest being from March. So in 6 months something grew to 9mm in my lung. I did smoke for 20+ years but I'm a realist. I'd put money on this being MM and gladly lose it if biopsy comes back neg.

SO my confusion here is I always thought surgery was best way to treat melanoma then followed with treatment. Something I'm missing? Maybe I should stop trying to understand this awful disease... Thanks for listening and to the many that have replied...I feel like this is best place to go for information and advice...

 

Josh

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

Login or register to post replies.

Linny's picture
Replies 1
Last reply 9/29/2013 - 4:42pm
Replies by: Roxy1453

Past President of ECCO, Professor Alexander Eggermont, Directeur Général of the Institut Gustave Roussy Comprehensive Cancer Center (France), who specialises in the treatment of melanoma, commented: "This pooled analysis clearly demonstrates that ipilimumab can lead to long-lasting tumour control in metastatic melanoma patients. With a response rate of only 10-15%, one can achieve more than 3-10 years survival in 17-25% of patients who have received only a few doses of ipilimumab. Thus, patients apparently can keep residual tumours under control for a long time when the immune system is properly 'reset', and the concept of 'clinical cures' becomes a reality. These survival results could even double or triple with anti-PD1/PDL1 monoclonal antibodies, and metastatic melanoma could become a curable disease for perhaps more than 50% of patients over the coming 5-10 years."

http://esciencenews.com/articles/2013/09/27/longest.follow.melanoma.patients.treated.with.ipilimumab.shows.some.survive.10.years

Considering where we were with Melanoma even as recently as 2010, this is pretty astounding.

I just with there was a way to "fast forward" Anti-PD1/PDL1 and get it on the market.

Stage III, Unknown Primary; 1 positive node in left axilla

Login or register to post replies.

blissful_creations's picture
Replies 1
Last reply 9/27/2013 - 11:46pm
Replies by: JoshF

Hi all! I have the exciting news to share that after being diagnosed with 3b and  5 10 mg ippi treatments part of a cancelled study arm for toxicity I am still NED. I have had my scans this morning showing I am free of disease. Lord knows I have had a lot of scanxiety.

I am really lacking in faith and trust sometimes in the Lord because sometimes I am really scared. I am 27, intially diagnosed at 25, with two kids, 3 and 5. I did not think I would be able to see another birthday with them but here I am. I guess if the Lord intends for me to go, I will be going but I will fight the good fight before I will be departing from this life.

Login or register to post replies.

Michelem's picture
Replies 4
Last reply 9/28/2013 - 9:17pm
Replies by: Michelem, Fen, BrianP

Hello - I'm the spouse of a newly diagnosed melanoma patient and am so glad to have found a reliable source of sharing information. I am frightened!
My husband has had a non-healing sore on his foot which is diagnosed as melanoma. Sonogram revealed three spots in groin lymph nodes which are also malignant. He will have surgery to address these issues in three weeks. We are awaiting results of his PET scan, and he will have an MRI next week.so we don't yet know what stage or what further treatments. He is a very youthful 72.
I look forward to learning from others here, and having a place to ask questions of those who have been through or are going through this experience. Thank you!

MicheleM

Login or register to post replies.

Aussielyn's picture
Replies 2
Last reply 9/28/2013 - 2:59am
Replies by: Johnfdc7, JoshF

Hi from Australia ! This is my first post .
I am Stage 4 after having mole on ankle removed 29 years ago. 22months ago I had full pelvic inguinal node dissection after a swollen lymph node showed metastatic melanoma. Only one node was affected & no radiation required. I was lucky & had no lymphedema. End of good luck!

While on hols in June this year I noticed pea size lump in soft tissue anterior left deltoid - biopsy showed malignant metastatic melanoma - PET Scan showed high grade tumour in right deltoid muscle, & mets in left groin, behind right knee, outside abdomen anterior to left para spinal muscles as well as lesion deep in right adductor muscles. I tested Braf positive & am now on compassionate access to GSK combo. This is my 7 th week - plain sailing till week 6 when fevers, headaches, mouth ulcers , severe feet & leg pain & severe dehydration all hit at once. I was taken off drugs (300mg Dabrafenib & 2 mgsTrametenib) for a week. Am now on 200mgs Dabrafenib but same dosage of Trametinib.

I would love to hear from anyone else who is knows about this treatment - what side effects ? What success? What your journey has been like? Today is the second day since resuming meds & already legs have started to ache ! Just hoping they don't get as bad as last week.
Do hope you all are feeling well & positive today.
Cheers Lyn

Heal with every inhalation and let go of cancer with every exhalation.

Login or register to post replies.

sbrooks90's picture
Replies 3
Last reply 9/28/2013 - 8:56am
Replies by: hbecker, POW, JoshF

Hello Everyone,

The last time I posted on this board, I had decided to undergo a CLND after a positive SNL was found. Today I can report that the results of the CLND has resulted in no further involvement! I cant begin to express how happy I was to find that out. I am now waiting to meet with a medical oncologist to determine the best treatment option for me (likely IFN-A) but have yet to come to the conclusion on what to choose. Big shout out to all active members on this board who have helped me through my journey so far... amazing people you all are.

Samuel

Login or register to post replies.

Pages