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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Patrick O.'s picture
Replies 14
Last reply 7/30/2016 - 12:13pm

Hello all. Just diagnosed with stage IV as of 7/13. Am seeing my OCL for the first time on 7/20. Just wondering what are a few of the most important things I need to ask him about.
I've been reading many of these posts and it has been a great source of info and hope.

Thanks
Pat

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Ddw's picture
Replies 7
Last reply 7/30/2016 - 1:11am
Replies by: Anonymous, MoiraM, Janner, Ddw

I just had a wide excision surgery on my heel. And they removed two groin lymph nodes and I'm waiting on pathology. So far the only information I had from shave biopsy it was a clarks level 3 with not clear margins. This is so different from breast cancer that I just finished chemo for in march. I have tripple positive breast cancer which means all hormone driven plus her 2 positive. I don't know if the two cancers cross in any way. When they put the radioactive tracer in me my groin lit up and also my neck which I don't understand. With my breast cancer I had a small tumor but it had already spread to my lymph node. I'm so confuse. If anyone could help I would appreciate it. I had the black spot on my foot for years my breast cancer oncologist told me we would worry about it later.

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Anonymous's picture
Replies 3
Last reply 7/30/2016 - 12:26am
Replies by: Lhawkins, Janner, slh4448

I had a growth removed from scalp and doc said path results were superficial melanoma. He first did a shave biopsy and said it was "nothing to worry about as it was in situ" per the results of the initial path.    But he then excised the area and sent for a biopsy of the margins.  Again, said no problems - it was in situ.  I got copies of initial and 2nd biopsy report and it is stated on the first report "Superficially invasive melanoma arising in melanoma in situ, lentigo malign type, melanoma in situ pesent at peripheral biopsy margin." Stage pT1b, Breslow: .30mm, Mitoses, 1, no Ulceration.

Path report from 2nd biopsy states no evidence of residual invasive or in situ melalnoma.

Did the doc read the path report correctly?  How can it be both in situ and invasive?  And do I need a 2nd opinion or any other treatment? 

 

 

 

 


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desertsun's picture
Replies 2
Last reply 7/29/2016 - 9:27pm
Replies by: desertsun, Anonymous

Well after a year almost to the day of Keytruda my husband's stage 4 shows progression on his scan. He was diagnosed stage 4 in November 2013 (lungs) and completed 4 doses of Yervoy with no response. Next came genomics and targeted therapy with Mekinist for NRAS mutation. He does not have BRAF. This worked for about 10 months with the next and most recent treatment being Keytruda. He has had additional sequencing but now shows NO mutations that gave available medicines.

To back up...in 2008 he was initially diagosed stage 3c and underwent radical neck, radiation and one entire long year of adjuvant interferon.

Back to current. Given the option of Opdivo combo or Temodar. We chose temodar at this time with the hopes to give him just a shot break from immunotherapy and maybe a very slight chance for some response from the temodar. Any input on temodar would be appreciated.

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Anonymous's picture
Anonymous
Replies 9
Last reply 7/29/2016 - 12:50pm
Replies by: Anonymous, desertsun, Polymath, Toby0987, RaquelP, Patrisa

I'm a stage 1 from 5 years ago.  had an annual physical the other day and LDH is slightly elevated 252 U/L.  I'm not sure if i should be worried or take any further action because of this with regard to the risk of it being melanoma as the cause.

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Anonymous's picture
Anonymous
Replies 1
Last reply 7/29/2016 - 11:21am
Replies by: Anonymous

I sit here right now, post WLE, with my boot and wound vac on and have way too much time to think about my diagnosis.

My melanoma was found just after I started IVF. My mole was there a long time before we started IVF so I don't think it's related. We finished our IVF cycle and have 6 perfect embryos waiting for us. All of them are frozen and my doctor (Dr. Gastman at the Cleveland Clinic) recommends waiting 1 year to try and implant them.

I'm OK with waiting, it's not thrilling, but I'm OK with it. But, I've read a lot about women, even with early stages, deciding not to go ahead with pregnancies.

I know this topic has been brought up on the forum before but anyone have more recent information/ recommendations about getting pregnant after a melanoma diagnosis?

Thank you!

Alc

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Shaneswife's picture
Replies 4
Last reply 7/29/2016 - 7:17am

Is LDH testing done prior to stage IV? My hubby had a brain mri fo which we haven't gotten the results from yet but the doctor did suddenly order an LDH test after the scan. Currently being restaged. Initially stage was 2b. Now with very large lymph nodes we know hes at least 3b.

Thanks in advance.

Janis

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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 disecction May 2016.  Enrolling in S1404 Ipi vs pembro.

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