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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Hello all. What a wonderful community this is. I wish I hadn't waited so long to register. I've only read a few threads, and I already feel encouraged by the stories of survival here. My melanoma story starts less than 3 weeks ago, but it's been such a long 2.5 weeks that it feels more like months.

I'm a 31-year-old male, and I was diagnosed with melanoma on my left calf on April 29th. My tumor was 1.6 mm thick, no ulceration, a mitotic rate of 1, and a Clark level of IV. My doc said I only had a 15% chance of spread to my sentinel lymph nodes. My wide local excision and sentinel lymph node biopsy was 3 days ago. Unfortunately, luck wasn't on my side, and my sentinel lymph node (inguinal) was positive for cancer. She only removed one node. Two lit up on the lymph node study, but the second was at a deeper lymph node basin.

In my node, it's only microscopic disease (she said about 0.5 mm), and there is no extracapsular extension. She thinks it's highly unlikely that it has spread to any of my other regional lymph nodes. However, and she warned me this was controversial, the standard of care will still be to do a complete dissection of my groin lymph nodes. Afterward, I'll probably be able to link up with a clinical trial (it's a research hospital) to boost my immune response against the cancer.

I'm a scientist myself, so I have been reading clinical studies, and I see how lymph node dissection doesn't improve survival at all. What have your experiences been? I'm wondering if I should try to skip the node dissection and go straight to the clinical trials. I am all about aggressive treatment, but it seems like the lymph node dissection has few positive benefits in my case (since I have no extracapsular extenstion) while greatly increasing the risk of surgical complications.

I know the standard of care is limited until research identifies a better solution, but does anyone know if the standard of care is changing at some places around the country?

Thanks and God bless!

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jjd583's picture
Replies 6
Last reply 5/20/2015 - 7:44am

Hi,

 

I have just been told by my GP I have a 4.3mm thickness on the Breslow and 4-5 on the Clark scale , melanoma on my scalp

I am 31 years old and relatively fit.

I'm seeing a specialist this week to have a wider excision done. There are no signs of spread in my biopsy , 

I guess I'm just wondering what to expect and of there is no real answer at this stage until the excision is done.

Any advice or info as to what I'm in for would be great

 

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raeds's picture
Replies 3
Last reply 5/19/2015 - 11:05pm
Replies by: Janner, raeds

Hi all -

I know I am very fortunate to not have a melanoma diagnosis, but I do have many atypical moles and have had 3 AMH (Atypical Melanocytic Hyperplasia) removed. I have read on line that some docs don't like to call a a melanoma in situ, so they say AMH instead. I DID speak to the pathologist (pretty reknowned - at Scripps in San Diego) and he said I did not have melanoma in-situ. 

 

Here is my concern: the derm who removed the first 2 AMHs 7 years ago only took 3 mm margins on one, and 4mm margins on the other. I am freaked that the margins weren't large enough. The pathologist had recommended 3-5 mm, and if I had been aware, I would have insisted on 5 mm. Fast forward 7 years, I have a 5 year old and a 21 month old and have just had another possibly atypical mole removed, and I am now obessessing about the old AMHs.

 

What is the liklihood of recurrence? Does recurrence happen at the site? After 7.5 years, am I in the clear on these? 

 

Please help. My anxiety is peaking. 

 

Thank you.

Rae

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Concerned_Australia's picture
Replies 4
Last reply 5/19/2015 - 10:56pm

Hi,

My Father-in-law was diagnosed with advanced melanoma in late 2014. I'm sorry, I don't have specific details about much of his diagnosis, prognosis and treatment as the information is filtered down to me from my wife (which comes from my mother-in-law). It has been difficult for me to obtain specific clinical information.

My Father in law had a primary, malignant tumour removed from his thigh in late 2014, and lympth nodes were also removed. A PET scan revealed multiple MET's (liver, spine, lungs), and he commenced immunotherapy (I wasn't given additional details). I believe this fits the criteria for a stage 4 diagnosis?

A recent MRI scan (last week) highlighted that the MET's were not responding to the treatment and it was ceased. The MET on his spine had reportedly increased in size and coincided with an increase in intense hip pain symptoms. I was informed that they were going to commence chemotherapy.

They just received the results of a second brain MRI today, which confirmed the presence of a brain MET (I was given no additional information regarding its size or if there was just one or multiple tumours. I was told that all other treatment (chemo) is to be cancelled and he will have 5-6 shots of radiotherapy to treat the brain tumour. I was also informed that apparently the radiotherapy will not commence for approximately 5-6 weeks and that according to the doctor, the waiting time is not an issue.

I am just wondering if it is normal to delay the commencement of a specific treatment for a brain MET for 5-6 weeks? My instincts (and my concerns re: the poor prognosis associated with melanoma brain MET's) are screeming "this is wrong!! He should be commencing the treatment right now".

I don't know if I am ignorant or just overly critical of his Oncologist and other treatment providers but it seems like there has been a delay in the commencement of each stage of treatment, or imaging investigation (in the order of weeks), and they (in my opinion), seem quite relaxed about the whole affair.

Should I be concerned about these delays (especially the brain MET treatment delay of 5-6 weeks)?

Thanks in advance for any guidance and advice.

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Anonymous's picture
Anonymous
Replies 14
Last reply 5/19/2015 - 9:03pm

My mother was recently diagnosed with Stage III melanoma, primary site unknown. She had a small mass in her right parotid that her ENT orginally though was benign. During her surgery on April 2, 2015 the doctor was concerned with the appearance of the mass and a frozen biospy was completed. Orginal diagnosis was non-oat cell Small Cell Carcinoma. It was two weeks later and path results going to Mayo that they confirmed she had Melanoma. Her orignal surgery was converted into a total parotidectomy and level I and IIb dissection. PET/CT scans just confirmed she still has three localized lymph nodes positive with melanoma and MRI was clear. We are seeing the melanoma specialist and he has suggested my mother participate in a clinical trial where she will be started on High dose interferon for four week five days per week which then moves to the standard three SQ injections per week with Ipi every three weeks two infusions. The trial is around 3 or 10 mg doses of ipi, and she would then receive the radical neck dissection on week six. Afterward she would go into a maintenance phase of the interferon with SQ injections and the Ipi would eventually be given every 12 weeks for the entire study for approx. one year.

 

I am concerned about the delay in the radical neck dissection for six weeks and knowing all the side effects with the study.

 

Is there anyone else who is going through this study right now, or any one have additional insight?

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Anonymous's picture
Anonymous
Replies 0

Hi, I'm a 32 year old woman with Stage 4 melanoma, based in the UK. I'm about to start on Ipilimumab, following a surgey to remove a met where the surgeons didn't manage to get clear margins.

I just wanted to do a quick survey to see if anyone knew of any female patients still able to become pregnant after their Ipi treatment.

 

There doesn't seem to be any official info, and  I'm trying to weigh up the likelihood of having any future fertility problems. My oncologist is generally great, but he's a bit unhelpful on this point, saying that if I were male then he'd recommend freezing sperm as it's easy and relatively cheap, but that for me it will be expensive, delay my treatment and is more likely to be unsuccessful anyway as the whole process has more problems. The lack of clear data also means that, in the UK, any pre-emptive egg-harvesting/freezing isn't funded. I understand that by pushing for it I would potentially put my health at risk but at the same time I'm nervous about making a decision now that I will regret later - I guess we're all just trying to make the best decision at the time, and hopefully a bit of extra info from you guys will help in that.

Thanks is advance for any help, info and advice you can offer!

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MindyD's picture
Replies 18
Last reply 5/19/2015 - 2:44pm
Replies by: cece, Anonymous, MindyD, Squash, Happy_girl, jenny22, Janner

Hi all,

New to the forum, as I was diagnosed earlier this month.  It's been a crazy couple of weeks, and I have learned a lot from stalking this forum.  ;-)

I am one week out from having the WLE and SLN biopsy, which removed 5 axillary nodes - all negative.  Yay!

This puts me at at Stage IIa.  My surgical oncologist decided to submit the tumor for a new test that they've only been doing for about 6 months.  It is called DecisionDx - Melanoma, performed by Castle Biosciences, Inc.  It is a gene expression profile test...  Quote from the site:   "...a molecular test which has been shown to identify tumors at high-risk for metastasis more accurately than the factors currently used by doctors, including the depth of the melanoma (Breslow's thickness)".

My doc says that if it comes back in the Class 2 (high risk) category, then there is a better argument to have further tests/scans to check for spreading, which insurance is more likely to cover.  He also said risk for recurrence would be higher, so we might go ahead with adjuvent treatment.

I am thrilled that something like this now exists, as I did not like the idea of the "wait and see" approach for the next 5 years.  Especially since it had been 6 years since I had seen a dermatologist prior to having this mole removed.  Who knows how long it's been there...  and I've heard several examples of Stage 2 skipping 3 altogether and goind directly to 4. 

From the studies I've read, the accuracy of past patients has been highly accurate.  I should get results in a couple weeks.  In the meantime, I tried to find some threads about this topic, to no avail.  Has anyone had this test done that would like to share their experience? 

Thanks!

- Mindy

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Just watched this and learned a lot!  Surgical Oncologist Jeff Gershenwald provides this excellent webinar on all aspects of surgery and melanoma from early to advanced stage. He does a great job with diagrams and photos explaining Sentinel Node Biopsy and also the new intralesional therapies. You can view it here:http://melanomainternational.org/webina ... 015-primer

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Anonymous's picture
Replies 6
Last reply 5/19/2015 - 8:48am
Replies by: Anonymous, ncdaniel, Thandster

I was diagnosed with stage 2 March 2015. 

I had a breslow depth of 2.9, clarks level IV, and a mitoitc index of 12. I don't know if anything else is important from the path reports.

My treatment was a sentinal node biopsy, followed by a wide local excison. (University of Michigan Cancer Center.)

The two nodes removed came back negative and my margins are clear.

My surgon says that is all I need for treatment. 

I am asking for comments or insight if this is ok or should I pursure other treament or scans.

Feeling relieved but also still a bit unsettled.

 

Thanks!!

 

Ken

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I have some questions about basic properties of cancer/melanoma that I can't find the answer to.

How is advanced melanoma sub-staged? I understand that the sub-stages are M1a (skin and lymph node metastases), M1b (lung) and M1c (any other organs, including liver and lung). But what about metastases in the bowels? Is that M1c? Does it make a difference for the prognosis if the tumors are in the liver or in the brain?

Why is the tumor burden important? What happens to the body if you have a high tumor burden? I have seen the word cachexia, but how ill do you have to be before that occurs?

Thank you!

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Anonymous's picture
Replies 3
Last reply 5/18/2015 - 6:54pm
Replies by: Ed Williams, Bubbles, Anonymous

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Bubbles's picture
Replies 1
Last reply 5/17/2015 - 8:55am
Replies by: JoshF

This is not something I am pushing at all, but did come across the info and thought it might be worth investigating in patients who have already had several therapies and are still seeking an effective treatment.  I am not sure if patients who have been treated with anti-PD1 will be accepted, though patients are required to have had treatment with IL2, ipi, vemurafenib (if BRAF+) OR dacarbazine.  So...here's the links to the article, clinicaltrial.gov info, and my write up (as best as I can tell, anyway!!!):  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/05/new-immunotherapy-trial-with-nbs20-for.html

Wishing you all my best.  Celeste

chaoticallypreciselifeloveandmelanoma.blogspot.com

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Anonymous's picture
Anonymous
Replies 4
Last reply 5/16/2015 - 2:18pm

My wife of 25 years recently passed away from melanoma.  She went to her family doctor with a large new thick black lesion on her face.  He sent her to an Ear Nose and Throat (ENT) doctor to have it removed.  We waited for 3 months to get in to this appointment.  He removed it and 2 weeks later told us it was melanoma.  It took another month to get in to an oncologist. The oncologist referred us to another ENT who did a radical lymphectomy (positive for 13 lymph nodes).  At this point it was 6 months from the time she called for an appoinment from her family doctor until the day of surgery.  They waited two months to heal from surgery and decided to do 30 treatments of radiation, which made her so sick and lost almost 40lbs unable to eat due to mouth sores).  They started a Gtube to do feedings.  Now 10months from her initial appointment they decide to start one dose of dacarbazine then Vervoy x 3 doses.  Asked several times for a brain MRI but told they wouldn't do it if there were no symptoms.  She told them several times of numbness and tingling in her hands and I told the doctor that her personality was changing.  She died 2 weeks after the third Vervoy dose from a bleeding brain turmor-9 months from the time of diagnosis.  My question-we went to a melanoma specialist, why did they wait 6 months before they started systemic therapy on a metastatic melanoma?  Why did they do radiation first? I truly believe that there must have been a better way to manage her treatment.  In the effort of improving care for future people living with melanoma what could have been done different (aside from having a family doctor that made her wait for 3 months for a biopsy for something that clearly appeared like melanoma)?  Thanks everyone for your help.  It has been a fast and difficult ride.

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mike_nj's picture
Replies 5
Last reply 5/15/2015 - 10:56pm
Replies by: Janner, mike_nj, Anonymous, Debbieamccoy

Hi Janner

 

This is MIke from NJ.   Whn the chat was active, we used to both participate regularly.

 

I skipped my scan this year as being 3B out 10 years but plan on getting one in a few months or so.

 

Reson for post is that my sister Patty had a recent shave biopsy of a mole on her shoulder and it came back as mm  IN SITU

I had questions of the effect of the shave on the true assessment and I was wondering if my sister could call you to get your perspective.  She has an appointment tomorrow with a surgeon.

 

My email is mike.kelly@churchdwight.com if you can send me your contact info.

 

Regards,

 

Mike Kelly

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eturner82's picture
Replies 8
Last reply 5/15/2015 - 10:42pm
Replies by: _Paul_, RJoeyB, Wheels1994

Hi guys,

I always like to have a plan B for my husband here is a run down on my husband and the treatments he had had.

May 2007- stage 1 mole on right shoulder removed

Feb. 2, 2013- Yearly derm appt. dr feels enlarged node in right arm pit

Feb. 18, 2013- Meet with Mel specialist UVA- ATTEMPTS biopsy of node but only pulls fatty cells and spindle cells- Orders MRI AND CT

Feb. 23, 2013- MRI of brain clear- CT showed "snowstorm" small areas on right lung

March- Rt. Lung has biopsy- NEG (no cancer ) biopsy

April 2013- 6cm lump removed from right armpit and is POSITIVE for mel

May 2013- All nodes removed from right arm- NED

July 2013- Radiation to right armpit

Sept 2013- CT of chest ( was going to do a vaccine trial at UVA)- CT showed he was not NED and had bone met to lower spine

Nov 2013- IL2 - after 2 rounds scans show growth- Bone Mets

Feb 2014- starts Braf combo drugs- responded until July 2014- Bone mets

Sept 2014- starts IPI and receives all four doses ( scans show progression) Bone Mets( spine, hips, ribs and skull) Bone mets are to numerous to count and both Lungs have multiple mets.

2015- STARTS PD1

Which now brings use to May 2015- First set of PD1 scans showed 1 new tumor in lung and new adrenal gland- continued on with PD1 (giving plenty of time for PD1 to work) scan coming in one week- He has had a rib break in this time and pain in his spine which has lead to a X-RAY that showed a T-5 spinal tumor and radiation was given to the area- last week arm pain lead to large arm tumor being found and rod being placed in arm today.

Needless to say I am very nervous about next Mondays scans and wondering if anyone has any suggestions on our next step if PD1 is not our magic bullet.... Would he be someone who could even have TILS?

 

thank you 

EMILY

 

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