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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LibbyinVA's picture
Replies 9
Last reply 1/27/2014 - 12:12pm
Replies by: JerryfromFauq, LibbyinVA, Anonymous, bodrum, Momrn5, momof4boys

Has anyone ever had a repeat SNB? I am asking this for a friend who first had a stage 1b melanoma removed from the ankle area. A WLE was performed and path report showed clear margins. The SNB was clean. The patient is now stage III due to a local recurrence a few months later that was very close to the original lesion and a repeat SNB was performed. Three nodes were removed. Two were clean and one node possibly showed some melanoma. The pathologists will not put a dx of melanoma in the path report. There is only one slide that shows approximately 30 atypical cells. They needed an additional slide to do more testing but the next slide shows no atypical cells. Based on the one slide, which no one will state definitively shows melanoma cells, the oncologist is recommending an inguinal node dissection and a clinical trial with three arms: 1-INF, 2-High dose IPI and 3-Lower dose IPI. He also told the patient that none of the nodes removed will show melanoma cells.

The patient is very uncertain about how to proceed given the fact that no one is sure melanoma is present and is wondering why a total node dissection is indicated due to the oncologist's statement that it will not show any melanoma. The patient knows the LND is big surgery and all three arms of the trial have significant side effects.

Would greatly appreciate hearing from anyone with a similar experience, especially what kind of treatment was recommended. Also, did anyone participate in a vaccine trial?

Thanks!

LibbyinVA (Stage IIIb, NED since 2006)

Never, ever give up hope!

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aldakota22's picture
Replies 30
Last reply 5/20/2014 - 3:32pm

Results of brain MRI & docs visit not very good from 01/15/14. Told to get affairs in order.Not words anyone really wants to hear who has mel stage 4.Melanoma has traveled to the brain but not as tumors but as mel cells into the cellephane wrapper around it.Meaning WBR would not be of any use cause there will be mel cells in the spinal cord that would only get back in.The thing I am fighting with is the addition of a Mekinist drug with the Tafinlar drug .Dual treatment was just approved this 01/08/14/.Praying that this works.Still have high PMA and faith in healing miracles.Will see Dr Pavlick on 01/29 than brain MRI last week of Feb.Still feel really fine.Major problem is constpation & anything I drink or eat taste really horrible.Force myself to eat.Any ideas of what I should do? Get another opionion or maybe a trial.Appreciate oppions and prayers.We will beat the beast. thanks      aldakota22

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Yvonne.D's picture
Replies 7
Last reply 1/28/2014 - 1:12am
Replies by: Yvonne.D, POW, Janner, hbecker, Momrn5

Evening everyone. I have 2 questions tonight if anyone could give your inputs and experiences.

Quick Bio.

Diagnosed back in December.

Had Shave biopsy Nov 27th, 2013. Pathology results said "Surgicial incision with 1 cm MA of skin. Left thigh. Superficial Spreading Malignant Melanoma. Level 2 invasion, vertical height 0.47- No ulceration. Mitotic index is one mitosis per 1 mm squared."

WLE Dec 31st. Pathology results appointment Jan 29th. Feels like it will never come!

So on January 10th lymph nodes in groin were tender and felt bumps in a few spots on left side. Went to family Dr on Monday the 13th. He felt it and said that he doesn't think its a tumor but said that he felt a few and it could be because of the WLE and is just fighting the possible infection I could have. However he couldn't tell because of all the bruising which is huge. Not hot to the touch so he said play it by ear for now and should it get warm to go and see him and he will write a prescription. Still breast feeding my 6 month old so happy he doesn't think its infected and I need to go on anything and have to stop. He did however want to have an ultrasound done on my lymph nodes to check for sure. I have an appointment on the 28th of Jan for that. Swollen Lymph nodes are still there, however, they are not tender anymore like they used to be.

So first question. Has anyone ever had a ultrasound to check lymph nodes? I can't find anywhere on the web where it says that one would use an ultrasound to check lymph nodes.

Second question. I have my first full body check on Thursday and I would like to hear other peoples experiences and what to expect. I am already angry at my Derm for doing a Shave Biopsy(Thats all they do there) and I want to make sure this time I am informed going in as last time I just went along with what they said. My family dr is going to set me up with someone else, in addition to my derm. He had training in Australia for Melanoma "detection"(Not the proper term) So I can have two sets of eyes which will be nice. Is there anything I should make sure they do?

Any answers are greatly appreciated. Many thanks.

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Anonymous's picture
Anonymous
Replies 1
Last reply 1/22/2014 - 10:54pm
Replies by: Gene_S

My husband is having his 2nd dose of 10 mg ipi tomorrow. He did very well with the first dose and we are so glad he did not get the interferon arm. Has anyone out there participated in this trial with the high dose ipi? How did it go? Any tips?  He got melanoma from hitting his thumb with a hammer! The wound never healed. This is very rare. He had  a partial amputation. He had two positive nodes and then a lymphendectomy. So far, so good. Feeling positive and being active. Any feedback would be appreciated.

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dhrahn's picture
Replies 3
Last reply 1/24/2014 - 1:17pm
Replies by: Anonymous, POW

We are going up to sign consents at The Angeles Clinic on Friday for this trial.  (in subject above)  Is anyone currently on or know much about it?  It's a stage ll.  Praying daily for compassionate use  for PD -1.    My husband is running out of options.  He's a very healthy 49 year old.  We were only married barely 9 months when he was diagnosed.  He currently is intermittely in pain but for the most part feels pretty good.  Taking naps daily too.   It's been a year and a half here we are begging, searching, listening to everybody that has something to share.  Thank you!

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JerryfromFauq's picture
Replies 4
Last reply 1/22/2014 - 8:55pm
Replies by: jahendry12, Linny, POW, tschmith
I'm me, not a statistic. Praying to not be one for years yet.

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Leigh's picture
Replies 7
Last reply 1/23/2014 - 5:42am
Replies by: Anonymous, HelenQLD, bethwkiss, profgal43, Janner, hbecker

Hi all,

I read the board occasionally and always get frightened to see people with early stage melanomas progress.  Other than derm reviews 6 monthly, what else are people being recommended to do? I think followup varies in different centres.  I am wondering about having yearly chest Xrays, opthalmologist review of eyes, potentially bloods including liver function tests (although it would be fairly late in the piece to pick up any changes there). 

More importantly does anybody have a clear idea about what supplements may be helpful, versus harmful, versus not useful at all?

I have heard info around turmeric, ensuring vit d levels adequate (mine aren't despite living in a very sunny place), other supplements?  I am very unsure around this and would really appreciate any guidance from people who have looked into it.  I have been into the health shops and the turmeric is generally bound up with something else and I am not sure how it all ties in together.  I am in Australia so this may impact advice people may be able to give. 

Thanks for any help you may be able to offer.  With two small children I need to optimise my body and ensure I do everything I can.

 

 

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bkinman's picture
Replies 4
Last reply 1/23/2014 - 10:19am
Replies by: POW, BrianP, bkinman

Went back to MD Anderson last week.  The tumor on my liver had grown.  I am currently on 200mg Tafinlar two times a day and fighting BCBS for the MEK to add to it.

We are meeting with targeted therapy clinical trial dr to see if i qualify for ERK trial.  Anyone else on this trial know anything about it?

Also, Dr scheduled me for a transcatheter arterial chemoembolization (TACE) Friday.  Anyone else have this?  Thoughts? Have appointment with clinical trial dr first, wonder if TACE will be dependent on whether I get in trial or if I can still have it and be on the trial.  I would think I could not.

Also talked about biochemotherapy.

I left the office thinking I understood where we were going with treatment, but I am not sure now.  He ws concerned aoubt coming off Tafnlar for the required amount of time to start the clinical trial and was waiting to hear from radiology about the TACE.  I checked oline this morning and he has the TACEscheduled for Friday after my clinical trial appoinntment today. I have called and left a message, maybe they will call back and let me know where we are with all this.  This means we have been in TX out of work since last Wednesday and looks like we will not go back until at least Sunday if not later.

Thoughts and comments appreciated.

Becky 

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bigb0624's picture
Replies 3
Last reply 1/22/2014 - 11:14pm

Now that GSK's combo has been approved  my MD is switching me from Zelboraf, which i have been on for about 14 months, to the GSK combo TAfinlar/Mekinist.

Has anyone used the combo and if so, what side effects did you have and was the combo successful?

Barry

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Tina D's picture
Replies 7
Last reply 1/24/2014 - 3:39pm

My 3rd Merck PD1 scans show no chage. I have many subcentimeter nodes that shrunk considerably after the first 12 weeks. The Dr now feels that it is likely there is no active disease present. Impossible to confirm without a PET scan which will be done in 12-16 weeks. For now, I am grateful for these wonderful results. I am saddened by the reports over the past couple of weeks from those here on the board. I am only posting this so as to hopefully encurage someone along the way.I debated a good while before posting with so many difficult situations many are facing at the moment.

Tina

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kpcollins31's picture
Replies 13
Last reply 1/25/2014 - 7:19am

Well, I had my PET scan this morning as a follow up to a CT right before Christmas that indicated a mass in my bowels. PET scan confirms that the mass is indeed cancer which makes me stage IV - "small bowel metastatic melanoma" per my oncologist. At least I was mentally prepared to hear this.

The good news, if there is any, is that the spread was very localized... just a single bright spot in the small bowel (it did seem pretty large to me though). Nothing else lit up on the scan.

Next step is surgery on February 4. At least I can enjoy normal food and some good adult beverages during the Superbowl :). The surgery will be a pain, but I am confident I will bounce back quickly. After surgery, I will definitely getting involved in some adjuvant therapy... which one I still need to decide. At least there seem to be a few good options for us now. 

Kevin

 

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nancyg's picture
Replies 4
Last reply 1/23/2014 - 5:35pm
Replies by: BrianP, Anonymous, POW, arthurjedi007

Hi

Is it protocol to have a Brain MRI after being diagnosed stage IV? In all cases? Or some?

Thanks for any info you can offer!

Nancy

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nancyg's picture
Replies 5
Last reply 1/25/2014 - 4:16pm

Hi

Is it protocol to have a Brain MRI after being diagnosed stage IV? In all cases? Or some?

Thanks for any info you can offer!

Nancy

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Sorry... Not sure why that happened...

nancy

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Rocco's picture
Replies 11
Last reply 1/25/2014 - 10:31pm

The report from my semi-annual CT scan and Brain MRI showed that I'm still NED according to my Onc at DFCI.  Nice way to start the new year.  Great considering the Stage IV diagnosis back in the fall of 2005. See my PatNet/history for all the details of treatments, etc over the years.  For those still very much in the fight, there is always hope.  Hang in there!

-Rocco, Stage IV in 2005, Ipi (MDX-010) responder

 

Luke 1:37

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