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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casagrayson's picture
Replies 3
Last reply 10/29/2018 - 11:56pm

Here's an update on our situation.  Hubs has had two primaries, on the jaw line and the scalp.  Both were caught early.  A recent appointment with an opthalmologist for a drooping eyelid and wandering eye had him in for a brian MRI.  Abnormalities were found by radiologist indicating possible vasculits (if on treatment for melanoma, which he was not) and/or perineural metastasis.  Anyway...

We went ahead with the appointment with the neurologist in late August.  He said that the MRI was "unusual" and wanted to have another one in three months.  So .. we waited ... and just had that done and had another appointment with the neuro.

In the three months since the original MRI, the concerning areas have not changed.  That's good news.  Stable is good.  Shrunk or gone would have been better.  DH said "well, I'm getting older, so can't this just be some old age thing".  Neuro said no -- that this MRI was definitely abnormal, and unfortunately it could be quite serious.  The radiologist has suggested a rescan in six months, but the neuro said he was still trying to decide if that long of a wait was prudent.  We talked about what this could be -- and the answer was vasculitis, which increases stroke risk.  The other potential was leptomeningeal metastatic disease, which is obviously a major concern.  The neuro said that the area is right at the junction of the meninges and the cortex, and it is almost impossible to tell by imaging.  However, the only way to know for sure is a brain biopsy, and he really didn't want to put my husband through that since we are seeing stability. 

So now we play the watch and wait game, with instructions to call the neuro immediately if and when any new symptoms pop up or get worse.  What we are dealing with now is severe eye pain (at the back of the eye), headaches, fatigue, drooping eyelid, and wandering right eye.  If he has another instance of the excruciating eye pain, we will see the doctor immediately.

Not the answers I really wanted -- as I feel we are still in limbo -- but with my DH's wish to not do imaging any more frequently than six months, I guess it's the best we've got.

Strength and Courage,

Susan

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Dreaf01's picture
Replies 2
Last reply 10/29/2018 - 10:12pm
Replies by: Dreaf01, marta010

I hope you all are kicking some major melanoma a**. I hoped when I started visiting this group 2 years ago that it was a temporary thing, but in August I was diagnosed with a deep 2.5 cm modular recurrence in the original melanoma site. I had a PET scan with an Oncologist in August prior to my WLE of the recurrence and at that time this was the only thing that showed of any concern per the report. I have since had the WLE and confirmed the diagnosis. I have transferred my care to Moffitt. I am scheduled to start Opdivo tomorrow and had a second PET scan Friday. This PET scan showed the following: Thorax: tiny non avid stable upper lobe nodule as well as multiple right groin nodes with SUV max of 2.7. My question is this, how do they know the lung module is stable if my last PET was negative? Also, would a CLND be offered along with the Opdivo? I feel like I have been anxious and stressed for 2 years. Any advice would be extremely appreciated. Prayers to you all ❤️.

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Jennycrn1's picture
Replies 12
Last reply 11/2/2018 - 2:06pm

Hi group!
I'm starting a trial on Tuesday of Opdivo with an un-named phase 1 checkpoint inhibitor (TIGIT) from BMS. Have been reading some recent posts about adverse effects- especially fatigue.
My question is: how soon do these effects start after dosing? I'm traveling 4hrs for dosing, and expect some of this to be driving alone. Will I be able to drive home after infusions? Or should I exepct to need a hotel after dosing? Does it take a few doses before the adverse effects may start?
Thanks in advance..
Jenny

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Lovetofish's picture
Replies 10
Last reply 11/1/2018 - 4:54pm

Hello all! I am new here and anxiously waiting confirmation of melanoma. I am only 28, and am a mother to have four children. 

I have had several atypical moles all my life. Last checked when I was probably 20 or 21, all were fine. Within the last few years one particular mole on my back has changed. It would itch randomly. I always chalked it up to being right on my bra line and getting rubbed, so I ignored it. This last year, my husband started mentioning how weird it looked and i should get it checked out. Life happened, and I forgot about it. About 5-6 months ago, it bled for no reason. Once again, figured I must have caught it with a shirt or bra. But my husband made me promise to get it checked out. Again, I forgot. With my kids and running our businesses, it slipped my mind. For the last three months, I’ve now had one swollen lymph node along with night sweats. I chalked the night sweats up to having a baby 11 weeks ago and being pregnant. 

I finally went in yesterday because I had some bumps on my arm. They were lipomas. While I was there I had him check the mole. He was very concerned and took it, along with a big chunk of skin, off with it. I then went to my primary to check my lymph nodes per his advice and how he does not deal with those. My mole got sent off for biopsy. I got a CBC done for lymph node. My doctor said if it comes back as cancer or gets bigger, or the CBC comes back abnormal, he will want to biopsy my lymph node as it’s been this way for months. 

 

I an am posting because I’m wondering if anyone else had a similar a story and it was not melanoma. I have a gut feeling it is, as my family members have had it and this mole was very weird. Being on my back, I never saw it until yesterday. My next question, I know it moves fast. Could that lymph node in my neck be the place it went, or are there closer lymph nodes? I am trying to be proactive and getting everything checked out and prepared for if it comes back as melanoma like my doctor suspects. It hit all the ABCDE characteristics and bled/itched periodically. 

What stage were you at when diagnosed? I am terrified for my children’s sake 

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jjk17's picture
Replies 8
Last reply 10/29/2018 - 7:13pm

I posted something the beginning of this week about some elevated labs (kidney functions) and the way I had been feeling. Was reaching out to see if anyone had experienced this ect. I have not heard a thing and I thought that was way unusual for this group....

I was to have #12 of Nivo last week, but withheld due to the way I had been feeling the last 2 weeks and my creatine level was increasing some. It is week 3 now with fatigue, no appetite, feeling cold, side pain off and on and just kind of full feeling. Oncologist wants to wait until next week for labs and a CT....Its been a long 3 weeks. I just want to feel myself again....Something must be going on for me to feel this way, this is NOT ME. I am usually on the go :(

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MarkR's picture
Replies 13
Last reply 10/31/2018 - 10:06pm

Hi All

Looking for some info on those of you that had partial response to Ipi/Nivo.  After a rocky road with side effects I’m off treatment and on to watch and wait.  Unfortunately (or fortunately depending on how you look at it) I can feel the lump daily in my arm and while I had an initial reduction it’s either stable or maybe a small reduction since my last scan.  At this stage CR looks unlikely so looking to hear from other partial responders on their experiences.

cheers

mark

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Stoofs's picture
Replies 2
Last reply 10/27/2018 - 2:23pm
Replies by: MelanomaMike, Bobman

I posted the other day about waiting for biopsy results. I just called my doctor because it's been a few days after they said the results should be back. I was told the pathologist sent the biopsy to U of M. I asked if this was pretty normal and they said it is not typical, but they want a second opinion. So, my mind is going to the worst place possible. Obviously something is wrong, right? Is a second opinion something to be concerned about? I know you all are going through the worst hell possible and I don't mean any disrespect by expressing my anxiety.

Stephanie McCann

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GeoTony's picture
Replies 4
Last reply 10/30/2018 - 6:55am

Hi all, its been a while, so I'm still on the Nivo maintenance and everything's stable, so no complaints there. However I've been offered a place on British Columbia's POG research program, basically they run a DNA/RNA profile on my blood and on a tumour sample, compare the two and look for anomalies. This then allows them to recomend existing cancer treatments and non-cancer drugs that target cancer pathways, the coordinator presented a way more technical description of the process and I'm still digesting the 18 page consent form. Trial # NCT02155621 if you're interested in the technical detail

My question is does anyone on the board have experience of DNA profiling to guide treatment?

Thanks

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I had a mole removed that my wife thought was changing, it was just about the size of an eraser.  My primary care doctor removed it and sent it off to the lab. The lab report came back as a moderate to severe atypical mole, margins were clear but by only .01mm.  Path report suggests re-excision for wider margins.  My primary care called with the results and said to come back when the current incision healed so he could remove more to be safe. This made me worry about the rest of my body so I scheduled an appointment with a dermatologist for a full body check and 2nd opinion. My primary care will check but I figure the dermatologist has a better chance of spotting something that looks funny since he trained in that filed.  He didn’t see anything else but wanted to see the lab report from the mole biopsy.  I sent the dermatologist the report and he called me back and confirmed yes it should be excised to get 5mm clear margins. 

 Here’s my debate, should I have the dermatologist do the re-excision or my primary care that did the original biopsy?  As long as they both send the new section into the lab and it comes back with adequate margins does it matter?  I know the dermatologist does this more frequently but he even said self checks are the best way to prevent melanoma and I would bet they will send off the biopsy to LabCorp or an affiliate like my primary does.  

I realize this is no where as serious as the majority of the posts on this site, but I want to make an educated decision but I don’t see an obvious clear winner. Any thoughts would be appreciated! 

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Jhynes's picture
Replies 2
Last reply 10/26/2018 - 11:28am
Replies by: Jhynes, Janner

Had a nevus malignant melanoma removed breslow .2mm . Then had a WLE the report says negative for residual malignant melanoma , margins negative for melanoma . It also says " centrally located on the skin surface is a sutures area that measures appx 2.0cm on length , and upto 0.2cm in thickness and comes to within 0.7cm of the closest short axis resection margin" my surgeon then said he is happy with what he took but would like to take another 0.7mm . But its upto me if I want this done or not. Does this make any sense?

J Hynes

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mrsaxde's picture
Replies 14
Last reply 10/30/2018 - 7:20am

Hi everybody!

Historically I haven't posted as regularly as some here, but I know there are a few of you who have been following my progress. I haven't been on in a while and I thought I'd check in with an update.

There's not much going on with me at the moment. My last scans at NIH, as I related a little over a month ago, were encouraging. Brain mets were resolving after radiation, the lymph nodes in my chest were stable, and two other non-target lesions were stable. Most importantly there was nothing new. My next scans are scheduled for a month from now.

My biggest problem since being discharged from the hospital post TIL trial has been nausea and appetite. I was down about 25 pounds after treatment, and in the past 3 months or so I have lost another 25. I needed to lose a few pounds, 25-30, but this was a little much. A month ago I saw my PCP and he cut my blood pressure medicine and metformin doses in half. He pondered stopping the metformin entirely but decided not to. My last A1C was 5.9%. Not great but not bad, either.

After trying several things, at the beginning of last week I decided to stop taking metformin. Within 24 hours my appetite had begun to rebound. Now, after a week and a half there's no more nausea and my appetite has  largely returned to normal.

So that's what's up with me. I hope everyone is enjoying their fall. I hear some cancer centers are offering pumpkin spice Opdivo and Keytruda for the season. ;-)

-Bill

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kandx's picture
Replies 17
Last reply 10/27/2018 - 9:45pm

Hi everyone,

I was diagnosed in August at stage 3a after WLE and SNLB revealed a small cluster of cells in my sentinel lymph node. I recently had a (mostly - except for probable surgical healing residual activity) clear PET/CT scan. I'm trying to decide between starting a 12 month series of monthly adjuvant Opdivo next week or just waiting/observation.

I was pretty set on adjuvant therapy from the beginning, but got a second opinion yesterday and I am now hesitant. It feels like my doctors and some family - while supportive of whatever I decide - are leaning toward observation mostly due to potential side effects of nivo on my otherwise active life and stress management (running and yoga and kids!). I have two young children and this is all bringing up fresh memories of my mom's short battle with a different cancer when I was younger, so I think I'm stalled in all my emotions. I've always told myself I would pursue whatever treatment possible and not let fear of treatment stand in my way.

I know nobody can tell me what to do, but I'm having a hard time pushing through this decision (I've been weighing it for weeks now). I guess I'm looking for more anecdotal info on nivo impacts on lifestyle as well as any wisdom on just coming to peace with their choices on this rollercoaster ride. I know that whatever I do, I want to be all in and not look back.

I've been reading here since I was diagnosed, and I've posted on a couple of your posts, but this is my first time starting a thread. I have found the support you all have for each other to be really uplifting and I now carry you and yours in my thoughts.

Continue to take care, and thanks for reading if you've gotten this far, Kelly

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Anonymous's picture
Anonymous
Replies 3
Last reply 10/29/2018 - 5:21am

I'm waiting for results of a mole biopsy done by my PC doctor. We thought it best in the mean time if I got checked by a dermatologist just to look at a couple other areas of concern. I've never had my skin checked so this was a first. This dermatologist has great credentials and has even won awards, so I figured I was in great hands. I just had the appointment today. She seemed like she was in a hurry and rushed through the whole thing. She didn't check my scalp or the back of my neck (didn't even move my hair out of the way.) She said everything looked fine, aside from what reamins of my funky mole, and left. I'm a little frustrated. If my biopsy comes back normal, should I maybe get another skin check by another doctor, or should I trust her and let it go?

Stephanie McCann

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Momofjake's picture
Replies 19
Last reply 10/27/2018 - 4:00pm

Okay friends, what do you have?? What’s working? 

Heres where we are:

Jake has done biochemo, interferon, pembro, ipi, Mek/Taf, lots of radiation(including brain), and is now on a clinical trial. 

The trial he ended up on is with Omid Hamid in LA. It’s a Cmet inhibitor with an infusion of a pembro type drug once a month. 

He felt like 3 new tumors grow when he started this. We haven’t had a scan since he started. He has lost 6lbs and feels lousy. Still up and going though. We are spending SO much money traveling!!! But will go wherever needed of course. 

We were hopeful about the trial “BrianP” did at MDAnderson with dr Yee. But found out today Jake doesn’t qualify due to a genetic marker. It was a non invasive adoptive T-cell trial w no big chemo. He really wanted that one. 

Now what???? Oh, and we gave no Mel specialist now. Our doctors left our hospital! No replacement for 18 months so far. On our own here. Plus I went crazy in Hamids office this week trying to get test results. It was NOT pretty!  He can do the ipi/nivo combo here in Utah. Haven’t tried that. Also, Jake wants to just clean out his body. He believes in all the health stuff and does all the supplements and diet. He is ready to just go to oasis of hope in Mexico. He is discouraged and really down. He won’t talk about any of this anymore so his dad and I are searching, defining the options, and letting him choose from there. What else can we do??

its in his heart and brain among all the other places so it feels important to make a good decision. 

K. There you go. A novel. Thank you. I think about many of you often and keep you in my prayers as I pray for Jake. It’s a hard thing you are doing. I know. 

Kerri

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Bennickliz's picture
Replies 4
Last reply 10/24/2018 - 4:22pm

I’m about to embark on my fifth round of ipi/nivo combo with radiation to both adrenal glands in the next few weeks.  I’ve had basically zero side effects with treatment.  Been on nivo maintenance in between ipi doses. Had radiation to left adrenal about 3 years ago.  Radiation to femur four years ago.  My tumors shrink, then grow.  Right now they’re about 4cm in size.  The smallest about 2cm.  Diagnosed 5 years ago right out of the gate with stage 4, unknown primary.  My subqs have disappeared.  

I’m wondering if anyone else has had multiple doses of the combo and radiation before and if side effects have increased along the way.  No other tumors at this time.  I feel very fortunate to be where I am at this point, but i am concerned about culmative side effects.

Thank you

Becky

 

 

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