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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youngann's picture
Replies 7
Last reply 7/28/2016 - 11:25pm
Replies by: Anonymous, jenny22, youngann, Polymath

I saw Dr. Mastrangelo at Jefferson today for my initial oncology consult. His bottom-line recommendation is that I enroll in a Polynoma Vaccine trial. However, the only thing he knew about it was that there were 3 arms - 2 arms receive the vaccine and one arm recieves a placebo. He said Polynoma has been used in treating melanoma for about 20 years but he said there was 'no credible data' on it.

I'm not sure how he can recommend something that has 'no credible data' on it but he offered to have "someone who knew more about it" call me.

 

Does anyone know anything about this?

 

http://www.cafepress.com/daybreakdesigns

Home of the original "Crappy Shirt"

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Ajwells's picture
Replies 3
Last reply 7/28/2016 - 7:09pm

It was a breeze. As expected. 

My exhaustion today is most likely caused by a 5 year old that was up all night with night terrors. :( But I am exhausted down to my bones, with a slight headache. Which I am again blaming on lack of sleep. 

But one question that I can't really find an answer on the intetwebs is, are swollen lymph nodes typical after an infusion?  I have two noticeable, not painful, lumps on the right side of my neck (my dissection was done on the left side of my neck). Since my doc said to call if I have as much as a hiccup (pretty much), I'm debating. Since it's only been a day and the first infusion doesn't typically cause any side effects I feel like I would just be a bother and written down as being a hypochondriac (kind of am). 

Is this a normal experience?  It makes sense since it is messing with my immune system. But that would also lead me to believe that my immune system is actively fighting something. Possibly a minor bug or something. No fever or signs of any illness. Just these two lumps hanging out on my neck saying "hey worry about me". 

27 year old mother of three. Diagnosis stage 3a with the primary on my scalp. Currently receiving Ipilimumab as adjuvant treatment. 

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youngann's picture
Replies 8
Last reply 7/28/2016 - 6:02pm

In the hopes of getting a second opinion, at 10am today, I called Dr Schuchter’s office in Valley Forge and, after explaining my situation, I was told that she didn’t have an available appointment at that office until the end of August. It was suggested that I contact the Phila office and have my initial consult there followed by treatment at the Valley Forge location…sounds good, right?

I was transferred to U of P where, after explaining my situation again, a man took my name, D.O.B., email address and zip code before transferring me to another extension. Yet again, I explained my situation and asked to make an appointment with Dr. Schuchter.

I was asked if I’d spoken to a Nurse Navigator and I explained that I hadn’t been made aware of anyone’s job title but that I’d spoken to two different people before being transferred to her. It was then pointed out that, in order to make an appointment, I must first have it cleared by a Nurse Navigator, who would then decide if Dr. Schuchter would see me or if my case would be handed off to an assocciate.

I was then transferred to a Nurse Navigator.

Of course, she wasn’t available so I had to leave a message explaining my situation yet again. After several hours, the Nurse Navigator returned my call and told me that she was in the GI department and, although she knew Dr Schuchter very well, she had nothing to do with the Melanoma department. In fact, the Melanoma department doesn’t even use Nurse Navigators. I relayed the previous events to her and, after first giving me another number to call, she changed her mind and said that she’d make the call herself as she wanted to get to the bottom of the matter.

A couple of hours later, a Practice Manager, called me and apologized profusely for the run-around that I’d been given. He listened to my story, took my information and said that he’d transfer me to a lady who would be happy to schedule an appointment for me. He asked me to hold while he filled her in on what had happened and, again offered very sincere apologies.

It was now 5:15pm and, after seven hours, I was finally feeling as if someone cared, so of course I broke down, started blubbering and had to hand the phone to my husband. The bottom line is that I now have an appointment with one of the top Melanoma specialists in the area on Thursday 7/28 at 9am – provided that Jefferson Hospital will get my records to them in time.

http://www.cafepress.com/daybreakdesigns

Home of the original "Crappy Shirt"

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Scooby123's picture
Replies 26
Last reply 7/28/2016 - 5:16pm

Hi guys, went for my scans results treatnent to brain worked tumour shrunk. Tumour to liver lungs no change stable so no treatment needed. 3 month breather till next scans. My heart was jumping out of my chest in the waiting room. So glad got another 3 months to chill.

Scooby123

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ecc26's picture
Replies 17
Last reply 7/28/2016 - 5:12pm

Due for a 3rd round of Ipi/PD-1 on Monday with a pre-infusion appointment on Frday. Since the last infusion I've had multiple problems (gastric pain, back pain, constipation, etc). Some I can guess where they're coming from (opioids and constipation for example), but every time I seem to solve one problem, seems like I just cycle back to the beginning and start over. Like this morning, pretty confident I got the constipation taken care of (and haven't had any opioids for a few days), but my back still hurts, and while I was able to eat a light breakfast and lunch (cereal, 2 small cucumbers, and a handful of fresh berries) the gastric pain has started in again, which is part of what lead to my spending so much time in the hospital last week. I just don't know how much longer I can do this combo with everything I've got going on. I'm looking into a medical leave from work, but even that gets tricky considering I teach at a University and classes will start before too much longer. I'm the only one in the department who teaches my fall (or spring) courses- there isn't anyone to step in for me and I don't want to let the students down.

I've already failed both Ipi and PD-1, so I was never all that hopeful for the combo, but it seemed like my only option if the trial failed (which it did). I've felt so poorly that I haven't been able to research other options and I'm looking for some help.

As of now, I've been through every FDA approved option for stage 4. Does anyone out there have some suggestions for a next step? I've already looked into TIL and was declined.

-Eva

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slh4448's picture
Replies 21
Last reply 7/28/2016 - 12:17pm

Hello all,

I hope everyone is doing well or as well as can be expected! I typed in CLND in the search engine for this site and I came across 5 people who had a CLND and I read through their stories and responses that they received from other people on this board. I gotta think that there are more people on here who have had the CLND procedure unfortunately!

So I just wanted to ask the question....Is there a need to have a CLND? I guess conventional wisdom says yes, but I very curious. I came across some results from a phase III study presented last year in May at the 2015 American Society of Clinical Oncology (ASCO) meeting in Chicago entitled "No need for Lymph Node Dissection in Certain Melanoma Patients".

Basically saying that a CLND for people with MICROmetastatic cutaneous melanoma following a positive SLNB "may" not be necessary. So after my SLNB, my pathology report states that I am MICRO and not MACRO!

In the paper it states that "a potential improvement in survival is only one reason that a patient could be recommended to undergo a CLND. The main reason is the chance of a local lymph node recurrence that would later require more difficult surgery". So I see the pros and cons.

Now my Oncologist at The University of KU told me that I would have a CLND if the pet scan and mri results come back negative. I have also reached out to MD Anderson about this and am awaiting their response to my question. I meet with my Oncologist from KU on Thursday so I will definitely ask this question to discuss.

I am curious to know everyone's thoughts on this and especially the thoughts from anyone that actually had the procedure and what the recovery was like, life thereafter, etc.

Just a reminder...my tumor stage from the AJCC based upon one positive lymph node from my SLNB says that I am T3aN1a, no ulceration, micrometastasis, 3mm, involves 7% of nodal cross sectional area and is negative for extracapsular extension.

Thanks in advance for your responses.....Stacy


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Chendo82's picture
Replies 2
Last reply 7/28/2016 - 10:23am
Replies by: caretothepeople, Janner

I was just diagnosed last Thursday and then seen my oncologist today. He diagnosed me at stage 1a. I asked multiple times about scans or lymph node biopsy and he told me none of the was needed: they would just do a wle and then he will see me in six months for a skin check. Is this normal procedure? I just don't want something missed and then later on find out it could have been caught early although with melanoma I know it's hard. Also my question for the more experienced. How do you love your lives normally and without worrying every little thing is melanoma spreading in your body? I have severe anxiety and I can't seem to quit thinking the worst. I have seen so many stories of stage 0 and 1 turning to stage three six months later. 

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Replies by: landlover, Lori Ann, Fen

Surgery for my  left neck dissection was last Tuesday and I am finally feeling well enough post.  What a mentally and physically rough ride- but as with most things in life the "This too shall pass"  mantra was true and each day got a little better.  I was discharged thursday (with drains pulled!) and was never so grateful for my own bed.  My surgeon is Dr. Kelly Malloy at U of M and I can't say enough about the great care I got there.  My post op visit is this coming wednesday and I hope to get the path results then too.  Then, on to the next part where I meet the oncologist and discuss treatment options.  What a wild ride. 

I took a short walk outside today-it has been a sublime spring weekend in Michigan and it did me a world of good. 

Thanks for being a support for me and for each other. 

Stage 3C, primary on neck, neck dissection May 2016.

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sweetaugust's picture
Replies 13
Last reply 7/28/2016 - 12:33am

Hi guys,

I have been very busy in the past month and a half and haven't been on the site.  I moved and now just started a new job.  All is great and I am enjoying life and the nice weather.

I just scanned again and found out today that all is perfect.  I feel so lucky!  But again that questions pops up....how much of Keytruda is too much?

I heard from my doctors that they have found that of 61 patients that have come off of Keytruda, only 2 reoccurred.  Those are great odds right?!?!  Seems as though the drug is doing a great job of re-training the body to fight off Melanoma.

So what are your thoughts and what have you found?  And I apologize if you all have already discussed this in the weeks following the ASCO meeting, I missed the conversations and am just trying to feel out peoples thoughts.

Thanks so much and all the best to you fighters out there,

Laurie

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landlover's picture
Replies 20
Last reply 7/28/2016 - 12:19am

I have been diagnosed with stage 3C melanoma- brief overview: mole on neck biopsied + for melanoma stage 1 Nov. 2015.  Swollen lymph node on left neck feb 2016, biopsied and positive for melanoma april 2016,  neck dissection June 2016 with three additional lymph nodes.  Now I am stage 3C, recovering from the neck dissection.  My melanoma is Braf negative.

I saw my oncologist for the first time yesterday, Dr. Lao at University of Michigan.  To my surprise, he is not offering ipilimubab.  He feels strongly that the benefit to stage 3 is not proven and the side effects are too potentially dangerous.   He offered me close monitoring, interferon or a clinical trial of pembro vs interferon.

I am very interested to see what others in my stage are doing and what your centers are recommending.  Based on the above options, I am leaning toward close monitoring as I strongly do not want interferon, but I kind of hate to "do nothing" active that could possibly increase my chances of not having a recurrance.

Thanks so much.

 

Stage 3C, primary on neck, neck dissection May 2016.

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mom3girlsFL's picture
Replies 5
Last reply 7/27/2016 - 11:57pm

Hi Everyone,

Its been a while since i've posted but I linger often and lift everyone daily in my thoughts and prayers!

I have been a warrior since 2003 stage 1, stage 3 in 2010 groin lymph node involvement. Did interferon till recurrence again, had radical lymph node dissection then watch and wait. 5 days before hitting 5 years I walk into oncologist and hear the dreaded "we've got a problem".  Honestly, before this appointment i was feeling embarrassed to even have these appointments when other people were really dealing with cancer!  So, stage 4 lung and retroperinoteal involvement late 2015.

Anyway,  have an auto immune disease which makes treatment tricky but started with full dose tafinlar mekinist combo. Had immediate response 3 mth scan but my body was a mess! We switched to zelboraf cotellic to see if side effects would lessen, but those meds created red purplish spots all over my body head to toe! Not funny, but yeah it was! Back to lower dose taf/mek combo.

The point of all this? Well, im still here. Still responding as of scan in june. Some days bite the big one-cant move out of bed, sleep half the day away...BUT, i also have really good days where i can be "normal"-go shopping, eat out, live! 

I really do consider myself lucky and i hurt so deeply for those of you suffering so much.  

I so appreciate the intelligent and informative posters out there who selflessly work to keep melanoma info current.  And, mostly, i am so grateful for this community who continually cheer each other on and encourage the fight.

Living WITH melanoma,

Laurie

Do not fear tomorrow, God is already there.

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Anonymous's picture
Anonymous
Replies 4
Last reply 7/27/2016 - 8:19pm
Replies by: Chendo82, Janner, btcedarr

I had a .6 melanoma removed and all secondary features were good except that i had 2mitosis per square.  Wle performed and no residual melanoma.  My doc says i have a good prognosis is this true.  They did not do a snlb because he said mels under .75 regardless of secondary features,  have a very high survival chance. I am a little confused and dont know what i should do if there is anything i can do.  

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ccf478's picture
Replies 2
Last reply 7/27/2016 - 8:05pm
Replies by: ccf478, Chendo82

Hi everyone! I just had a biopsy done yesterday. It's my first one. I had a very small flat mole on my hand for years, but recently it started getting bigger and darker. She said she wasn't super worried about it but we would biopsy it just the same. My question is, do they take the entire mole during a biopsy? I just checked today after the swelling is down and there is a tiny piece of it left on the edge of the cut. Is that anything to worry about? I can attach a photo if anyone is curious. Thanks so much!

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slh4448's picture
Replies 21
Last reply 7/27/2016 - 10:49am

Hello everyone,

My name is Stacy and I'm a 51 year old male that was diagnosed with melanoma back on May 24th. The original pathology report from my Dermatologist came back stating Clark's level IV, 2.37mm with no ulceration on my right knee and malignant melanoma in situ on my right neck. My chest xray is clear. I live in Kansas City. I went down to MD Anderson on June 22nd and met with Dr. Royal for a second opinion. Both Dr. Royal and my Surgical Oncologist here at the University of Kansas Hospital Cancer Center believed that my right knee identifies more as stage two.

Last week on July 12th, I had a Sentinel Lymph Node Biopsy of one node removed from my groin area. I also had a wide local excision procedure on my right knee and right neck. The pathology report that came back states each location is negative for melanoma. However my SLNB came back positive for metastatic melanoma. 3mm in maximum diameter and involves 7% of nodal cross sectional area and negative for extracapsular extension.

I was given these results on July 18th. I was told because of the positive lymph node, that my melanoma is now at stage three (T3aN1a). I have a pet scan scheduled for July 25th and an mri of my brain scheduled for July 28th to determine if any other areas have been affected. I meet with my surgical oncologist on July 28th to go over all of the upcoming results, etc.

I have sent my latest pathology report down to my oncologist at MD Anderson for his opinion as well.  

I would welcome any thoughts, suggestions or ideas as to how I go about attacking this from here.

Regards,

Stacy

 

 

 


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Jewel's picture
Replies 4
Last reply 7/26/2016 - 10:09pm
Replies by: Jewel, Ed Williams, Bubbles

First of all I would like to echo the words of so many of us on this Forum. Thank you so much for

all you do to help educate us about this disease and the choices that are out there to help combat it.

Recently you posted about responces between the Ipi and Pd1. My husband did the 4 doses of Ipi 3mg and

finished in an 2015. My question is this, are the 3mg doses of Ipi showing the complete responses that the

10 mg has? It seems to me that the majority if not all who are blessed with long term remission did the

10mg. My husband has scans again in Aug and of course the anxiety is through the roof. Thanks again

Bubbles.

 

Jewel

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