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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knittingirl's picture
Replies 1
Last reply 1/13/2016 - 4:44pm
Replies by: _Paul_

I followed a ipi/nivo treatment at the end of the year 2015, but after the third infusion I had to stop because of diarrhea and raise of liver enzyms. I have been on prednisone since December 14th at 60 mg /day and the doctor had to increase the dose at 80 mg per day on December 30 th as things got worst. He prescribed me also some budenoside.

Over the last 3 days, my diarrhea has improved and we have started to taper the prednison. I am now at 70 mg/day.

I have few appetite and the poor diet made me loose 8 kg. I am tired but stay positive as my diarrhea gets better and I still don't feel anymore the tumor in my groin. My liver enzyms are normal. I had also some hypothyroidism but it is now under control.

I heard that the tapering of prednisone can be bad. Also, when I will be recovered of this colitis, my goal is to start nivo only but I read that it can trigger also diarrhea.

I am now on medical leave, and I was wondering when I will feel better so I may go back to work . Can you work in a stressful environnment ( I teach in a demanding private school) on low dose of prednisone ?

Is anyone would share his or her experience ?

Thanks

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jamieth29's picture
Replies 13
Last reply 1/10/2016 - 11:13pm

At home recovering well from surgery and thought i would share the results with everyone here. As some of you know i was diagnosed may 2015 3c. I have actually never been n.e.d. since I was diagnosed. I have always had "local" lymph node involvement and many intransit spots that kept coming back on incision line. I was going to have surgery again in August to try and stop intransit legions again but pet scan showed another lymph node was active. I started B-raf inhibitors August 11 after we decided that we needed something to give surgery a chance to stick. watched spots on incision disappear. Path came in and still showed microscopic foci of viable melanoma. However the report said node showed signs of regression. Report states... together these findings demonstrate involvement of the lymph node by multiple foci of metastatic melanoma on a background of melanin containing histiocytes (i.e, melanophages) these findings likely represent partial regression of a metastasis either spontaneous or by treatment. The other 6 nodes were clear. The resection of my leg showed no active cancer. It was a big surgery on my leg the pelvic dissection took 1 hour the leg surgery took 10 hrs. A week and half after I am able to walk with no crutches. I see my doctor Tues to go over report and next steps. He did send me a message the he reviewed with his team and it looks like things came off "well" whatever that means. It has been 3.5 months since I've been scanned so I know that will probably be next. Nobody is sure if things will "stick" after all this but I definitely think it's a good option to try. I think there may be big potential giving braf drugs as a neo adjuvant. Why not if it can kill some cells and a person is resectable or potentially resectable after the drugs why not try. Hopefully this can give me some disease free time and maybe a chance of ned for good. Time will tell I guess. I have been off drugs since Christmas. Tues I am going to talk To Dr Luke about continuing the braf drugs but I think he is not wanting to do that. Anyway there it is...Boom! Maybe this can help someone out there. Any questions ask away. Hope everyone is well.
Jamie

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pookerpb's picture
Replies 9
Last reply 1/11/2016 - 11:56am
Replies by: pookerpb, Kim K, Anonymous, kylez, Janner, Fen

Havent posted in a while. Our new firewall protection at work does allow me to post or comment, only read...uugh since the sign in process changed on thie board.

My husband (45) State IV  has now failed on Ipi and now Keytruda as of this week. Has been on Keytruda for a year now with signigicant growth on his last scans. Stopping Keytruda. With 3 failed treatments, we are facing whether or not to try IL-2 either alone or with the Veg-F if thats the arm he would receive. We refused IL-2 3 years ago since Ipi was to becomb available to us. Doctor says now is maybe the time to try since he is still not too symptomatic and fairly healthy for now. Eventually when health declines which we feel wont be long, he wouldnt be able to tolerate the treatment and could be disqualified.

Would like to hear from anyone what your IL-2 expereince is since response rate is so small and side effectsw can be so severe.

On days not in the hospital in between hospital stay, how did you feel? Were you able to go out and do things outside of the house or too sick?

 

Krista

 

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katie1's picture
Replies 9
Last reply 2/4/2016 - 9:36pm

Given the recent FDA approval of adjuvant Ipi, I wanted to let people know my husband has been NED now for 30 months since starting the IPi vs Interferon trial. He was in the 3mg/kg arm of Ipi.  He only received the 4 induction doses due to side effects. He is stage IIIC (T4bn2cM0- with deep amelanotic nodular lesion).  He had rash and itching beginning after the first dose (and then ongoing which was treated with topical steroid and benadrly), ocular (after 3rd dose-resolved with steroid drops). and He also started with minor diarrhea after 3rd dose which coninued on and off managed by Immodium.  Following the 4th dose he developed hypophysitis.  He was treated with high dose steroids and all his hormones returned to normal.  However, after his taper from steroids he went into adrenal crisis and has been steroid dependant ever since (due to adrenal insufficiency). It took a little over a year for the dosage required to stabilize (required higher dosage of hydrocortisone over time).  He is currently doing really well and is very thankful for the trial option.

I wish all of you starting on Ipi the best.  Report all side effects even if they appear minor to your oncologist right away.  Make sure you are being treated by a melanoma specialist with experience treating these side effects.

Kate

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stevecathy's picture
Replies 8
Last reply 1/15/2016 - 11:11pm

My husband is stage 3A with original melanoma on 4th right toe that was amputated July 2105. He had a lymph node disection in the groin with 4 positive nodes. He has now had 4 infusion of yervoy ending Dec 3rd of 2015. Last week went to dermatologist for 3 month check , he had approx 5 to 6 spots by the surgery site that looked like blood blisters but came back melanoma. Wondering if anyone has experienced anything like this with yervoy? Thank you

Cathy Jewell

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Anonymous's picture
Anonymous
Replies 1
Last reply 1/9/2016 - 11:31am
Replies by: jamieth29

Sorry but I'm sick to death of the time wasted and the money wasted and the tests and the tests and the test.im going to skip it all and let the chips fall where they may.

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RifClitz's picture
Replies 20
Last reply 1/13/2016 - 7:12pm

Hi, Today the doctor told us that my father has Melanoma. They removed a birthmark from the back of his hip and it was positive.... The details are as follows:

 

Thikness: 1.1 mm

Clark Level : III

Nodular and superficial spreading

Involving Lateral margin

non-ulcerated

Mitosis: more than 4/mm2.

The doctor suggested another appt to see whether lymph nodes were penetrated.

 

I have a few questions. Given all this, what's the likehood that the lymph nodes were penetrated. Also, what do you think is the stage??? Please, please help!!!

 

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https://www.facebook.com/groups/906485416088740/#

 

Hello Everyone, My name is Erica. I am the caregiver of for my mom who was stage 4 oral mucosal melanoma. Her diagnosis came last May after a long battle with gum pain. Since then, she has had to have her upper jaw removed, her hard pallete removed and wears a prosthetic now and has had 30 rounds of radiation.

Stage 2 Lung Cancer was also picked up on the PETscan so a Lobectomy was in order and due to mets to the lymphnodes, chemotherapy has actually begun today.

I have been very active in the melanoma community since this past summer to help bring awareness to this terrible cancer.. whether MM or cutaneous melanoma. Awareness is key.

i also find it is hard to bring all of us together...so, we opened a group on facebook to bring us all together;

Mucosal Melanoma Warriors who are trying to find others like them. They suffers from MM in areas such as :

Vulva

Vagina

Nasal

Oral

Rectum

You will find the link at the top of this post. Thank you and best wishes.

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https://www.facebook.com/groups/906485416088740/#

 

Hello Everyone, My name is Erica. I am the caregiver of for my mom who was stage 4 oral mucosal melanoma. Her diagnosis came last May after a long battle with gum pain. Since then, she has had to have her upper jaw removed, her hard pallete removed and wears a prosthetic now and has had 30 rounds of radiation.

Stage 2 Lung Cancer was also picked up on the PETscan so a Lobectomy was in order and due to mets to the lymphnodes, chemotherapy has actually begun today.

I have been very active in the melanoma community since this past summer to help bring awareness to this terrible cancer.. whether MM or cutaneous melanoma. Awareness is key.

i also find it is hard to bring all of us together...so, we opened a group on facebook to bring us all together;

Mucosal Melanoma Warriors who are trying to find others like them. They suffers from MM in areas such as :

Vulva

Vagina

Nasal

Oral

Rectum

You will find the link at the top of this post. Thank you and best wishes.

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Maereard's picture
Replies 3
Last reply 1/11/2016 - 9:06pm
Replies by: Maereard, stars

Okay I need some advice from people who have experienced this and understand my fear. I had melanoma removed from my right shoulder blade about 3.5 years ago. This morning when I took a shower it hurt to touch. I checked it when I got out and there is a little red spot right in the middle of my scar. My dermatologist could not get me in today so I went to my oncologist. He touched it and said it's just a stitch. Nothing to worry about. Has anyone else had a stitch bother them so long after surgery? Should I schedule a dermatology appointment and ask for a biopsy or am I just being silly?

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Recently diagnosed as favoring Spitzoid Melanoma Clark level IV, Breslow 2.6 w/mitosis of 6. Lump was on top of my ear. Going to Milton Hershey Hospital which is part of Penn State. Anyone have experience there?
Hoping to go to Penn but they don't take my insurance.
Thanks

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jennunicorn's picture
Replies 2
Last reply 1/10/2016 - 11:50pm
Replies by: jennunicorn, Anonymous

http://www.puravidabracelets.com/products/melanoma-awareness

Just found this site with a lot of different awareness bracelets. The Melanoma awareness bracelet is $5 and $1 of every bracelet gets donated to Melanoma Research Foundation. Thought I'd share. 

-Jenn

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mrsaxde's picture
Replies 11
Last reply 1/9/2016 - 6:18pm

Well, I saw the doctor today after my latest CT scan a week ago. The news wasn't quite what I had hoped, but it wasn't bad at all. There have been no changes since September. Several small spots in my right lung are still the same size, as are the spots on my skin that are near the primary site. There is nothing new anywhere. I would have liked to hear that everything had shrunk some more, like it had in September, but I can deal with this.

A couple of things that maybe some of you can help me with....

1) I recall seeing someone's post on here saying that their oncologist believes that the "sweet spot" for Keytruda to kick in is somewhere around infusion #10. Does anyone know if that's accurate? Tomorrow will be #9 for me.

2) What's the possibility, given that nothing has grown, that what is still showing up on this scan is actually necrotic tissue that my body has not flushed away? Does anybody have any knowledge of, or experience with that possibility?

I'm actually doing well. Feel good, spirits good. My oncologist still thinks that Keytruda might help me beat this, given my overall tumor burden is very low.

-Bill

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Nanners10's picture
Replies 11
Last reply 1/8/2016 - 6:50pm

Hi all,

Just writing to see if anyone has any thoughts on the following:

Original diagnosis May 2002, WLE removed 2.24mm mole and no further treatment was deemed required.

Recurrence in regional (groin) lymph node basin November 2014. Groin dissection performed only one malignant node of four taken. Completed ipi/interferon trial in June 2015 (received ipi at 3mg dose).

One enlarged groin and one enlarged pelvic lymph node found on CT scan November 2015. Groin node was biopsied and determined to be melanoma. Surgery performed Dec 2015 to remove both lymph nodes. Three nodes were taken in total, the two enlarged ones were positive for melanoma, the other one was clear.  

Now, options that have been given are radiation and interferon. No trials are available for me as adjuvant therapy at stage 3b because I already had ipi. 

My dr. says that he doesn't think interferon will do anything for me because the ipi failed and it already has such low stats to start with. He says it will only make me sick for a year but nothing good will come of it. How does he know this? Is there anything to link interferon and ipi? Or is this just on the fact that ipi has a better track record than interferon and if that didn't work than chances are interferon won't either. I was considering interferon as a last resort if only for the fact that it would delay recurrence and who knows what drugs will come along in that time. 

Radiation is probably a possibility (waiting on my consult) but there aren't any studies that show increased overall survival (to my knowledge).

My dr. says that there are lots of treatments for me "down the road" because of my BRAF mutation. Problem is that down the road means stage iV and that's not very comforting.

I feel like I am just waiting on another recurrence.

I would love to hear from anyone in a similar situation to get your thoughts on what you have done or been offered. 

Nancy

 

 

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