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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Bradley75's picture
Replies 4
Last reply 7/21/2017 - 5:48pm

After my latest MRI and PET, all my lung mets have resolved.  I have no FDG Uptake in my lungs at all.  A half dozen doses of Keytruda after failing the Ipi/Nivo combo have paid off.  Also, the favorite phrase for all of us here, no new mets.  That phrase from the onc never gets old.

Now for the twist.  The tumor in my back is growing.  FDG uptake is up to 13.2.  It seems the Keytruda may be slowing it, but it can't overcome it.  The tumor is causing me considerable pain and is pushing against my spinal fluid.  The tumor is in the bone of my 5th rib and kind of looks like a lollipop sticking into my spine.  After consultation, conversation, and everything else I have decided surgery is the best route.  My Mayo medical teams all say radiation is a bad idea right now.  Even the radiologist doesn't recommend radiation because we already radiated that tumor back in December and it didn't kill it.  This tumor was inoperable back in December.  It is now in a spot where the surgeon feels surgery will help.  The tumor is about 2.5 inches at its widest so there is a bit to remove.

The plan is tumor removal on the 27th or at least as much of the tumor as they can get.  They want to get me back on Keytruda ASAP after surgery in the hopes that it will knock out all the scraps left behind.  They have said radiation is a better option at that point, if needed.  This is the only cancer I have left right now, so I am going for it.  Any experience out there with this type of surgery?  Curious about any thoughts you all might have?

As always, we fight on!

Brad

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CindyCo's picture
Replies 12
Last reply 7/21/2017 - 5:22pm

My mom starts her clinical trial today and receives her first infusion of IMCGP100!  She will be getting this weekly, with an additional dose of Durvalumab every 3 weeks.  

Praying that this will be a promising treatment for her without much toxicity!  We're not sure why, but her liver numbers have been elevated lately.  This worries us, because she's had to stop treatment before for hepatitis (both on ipi/nivo and pembro).  We've been careful and not taking any supplements or anything herbal, so we're not sure what the cause is.  Maybe a continuing flare or reaction to last week's liver biopsy?

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Dore's picture
Replies 5
Last reply 7/21/2017 - 4:04pm
Replies by: Dore, Anonymous, Janner

I recently had a biopsy of a mole on my stomach.  I am scheduled for WLE on August 9.  The nurse told me that basically it was as close to a melanoma as it could be without being a melanoma.  After reading the path report, I am freaking out a bit because it pretty much says they can't exclude the possibility of it being a melanoma.  Any help deciphering the report would be greatly appreciated!!

------------------------------------

Diagnosis:

-Compound Dysplastic Nevus, Severe Atypia

-The lesion involves the deep and peripheral edges of the biopsy.

​Please note:  The specimen shows concerning cytologic and architectural atypia. The atypical melanocytes are large and epithelioid and there are patterns of incomplete pagetoid spread. In addition a mitosis was identified within the junctional component. We cannot entirely exclude that the changes represent a partial biopsy of melanoma and wide full thickness re-excision with adequate margins to ensure complete removal and to allow further pathologic evaluation is recommended.

Microscopic Examination:
Sections show a thin biopsy of skin. There is proliferation of atypical melanocytes both singly and within nests at the dermo-epidermal junction and singly and within nests in the underlying dermis. The melanocytes are large epithelioid cells showing prominent villi. An occasional mitosis was identified at the dermal junction. There are focal patterns of incomplete pagetoid spread. Lesional cells are highlighted on Melan A stained sections.
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Thanks in advance for any insight you can offer on this report!

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Elaine Block's picture
Replies 2
Last reply 7/21/2017 - 2:53pm

Hi, all -- I wanted to introduce myself.

My husband, David (age 71), was diagnosed with a melanoma on his back in May -- Breslow Depth 6.75 mm, mitotic rate 4 per mm3. He had a wide excision and SNLB in June with clean margins and no lymph node involvement.  During a follow-up visit in June with our oncologist, the onc felt a new lump between the surgical site and the lymph nodes -- we were sent for an ultrasound and then needle biopsy, which came up positive for metastatic melanoma, making him Stage IIIC.  No other suspicious areas showed up in a CT scan.  Our onc and our 2nd opinion onc considered the new site to be in transit to the lymph nodes. The new site was removed with clean margins and we're now trying to figure out the next steps.

It seems the 2 primary options are the soon-to-close trial comparing Ipi and Pembro, and the upcoming trial comparing Ipi and Nivo alone and in combination (though I read on another thread that they may be dropping the IPI alone arm).  Our greatest concern is that my husband had a bad reaction to prednisone when he received it after having gum surgery.  We're meeting with our 2nd opinion onc (at Georgetown Lombardi) again on Monday -- he's asked David to look into what the binding agent was for the Prednisone -- hoping to find that his reaction was to the binding agent, not the prednisone itself.  Georgetown is participating in both the existing trial and the new trial; our initial onc (at Inova in No. Va) will be participating in the new trial but isn't participating in the existing Ipi/Pembro trial.  

With David's possible allergy to prednisone, we're particularly worried about the side effects from Ipi.  If it's true that the new Ipi/Nivo trial will only have two arms, it looks like he'd have a 50-50 chance of getting the Ipi in either trial,  I wonder though, if he winds up being randomized into the Ipi-Nivo combination arm and has intolerable side effects, whether that would prevent him from getting Nivo alone at a later date because of the difficulty of proving which treatment he reacted to.  

If it can't be determined that David can tolerate prednisone, one other option is to choose no further treatment at this time, with very close follow-up -- if his melanoma recurs, he might be eligible to go straight to Pembro or Nivo.

It's tough sorting it all out -- I'm hoping we'll have a better sense of direction after seeing the onc on Monday, but I'm only guardedly optimistic about that!

We welcome any thoughts/advice you might have.

Thanks,

Elaine

Elaine

Husband, David, diagnosed 5/2017, stage 3C

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Anonymous's picture
Anonymous
Replies 9
Last reply 7/21/2017 - 2:29pm

I just read that Senator McCain's gioblastoma newly diagnosed is related to his previous melanomas going back to 2000.  Really scary!  I hate thinking that the mole on my shoulder that was removed last year could potentially pop up as brain cancer in a decade or so.   This disease scares the snot out of me.  My first year post-cancer was full of denial.  So far this second year is more anxious and frightening for me.

 

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Photopassion's picture
Replies 1
Last reply 7/21/2017 - 1:51pm
Replies by: sister of patient

I just received my pathology results from a mole that I had biopsied. The mole in question used to be a smallish flat mole that was uniform in color. I thought it randomly appeared a few years ago but wasn't really sure. Recently, while I was pregnant, I noticed a small part of the mole had changed and was now a dark brown that didn't match the rest of the mole. I was worried about the change and decided to have it biopsied.

Today the PA called me back to say that it was a benign Spitz nevus but they recommended removing it with 2 mm margins to be safe. She didn't give me any other details and I wasn't really prepared with questions.

After researching a bit,I read that it's very difficult to distinguish between a Spitz nevi and melanoma. I also read that they mainly occur in children (I'm 31). The pictures online really look nothing like my mole either.

Has anyone else received this diagnosis or have any thoughts? It doesn't seem right to me so I am requesting the pathology report and a second opinion. It's really freaking me out and I'm not really sure what to think. If it's not very deep then I guess getting the excision would be good if it were actually a melanoma. Ugh, I really thought this part would be straightforward :(

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Scooby123's picture
Replies 6
Last reply 7/21/2017 - 12:15pm

Hi all plan is PD1 so any one who has experience with it much appriciated . Starting ASAP , cannot do radiotherapy node too near wind pipe and could damage it.

Thanks

Scooby ❤️

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Jubes's picture
Replies 15
Last reply 7/21/2017 - 12:15pm

Hi all

just wanted to share with you that my biopsies fromfriday are clear. They took five biopsies from 2 sites in my chest and all clear of melanoma despite very hot pet scan

it seems the hot spots were likely granulomas. They didn't check the liver and neck spots but assume they are also not melanoma 

we will continue to check with 3 monthly pets but even a false negative is better than a positive

thanks to all for suggestions if it progresses

anne-Louise 

 

 

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jc2dad's picture
Replies 6
Last reply 7/21/2017 - 12:09pm

I had a black line that appeared in the fingernail of my middle finger of my left hand about 18 months ago.  After a couple of months the discoloration spread and the nail split.  I made an appointment with my PCP and had him examine it along with some stomach issues I was having.  He said the nail was nothing to worry about, probably fungal or damage to the nail bed from trauma (of which I had none).  Long story short after complete deteriation of the nail bed and a raised ulceration of the skin below the nail bed and two more examinations by two different doctors (both who said it was an infection at best and prescribed anti-biotics) over the next year, I finally visit the ER because of the pain and bleeding in the finger.  ER doc immediately refers me to dermatologist and get biopsy the same day.  Preliminary pathology came back as malignant melanoma, blood work shows melanoma is already in my blood system, so Dermatologist referred me to Md Anderson, said the mitosis shows very agressive.  Don't know if it has metastized anywhere else yet, but definitely having symptoms of metastizes in other areas.  39 years old healthy with 4 small kiddos that I am raising by myself, so I have to beat this.  Have an appointment with Dr. Michael Wong at MD Anderson on August 1st.  Sorry I don't have more information at this time.  Any advice would be appreciated.

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Anonymous's picture
Anonymous
Replies 12
Last reply 7/21/2017 - 11:23am

 My husband had to stop the opdivo/yervoy treatment after three. He was on a break for a month (after a few days in the hospital) to help rid the side effects.  Next week he will have a  scan and talk to his doctor about the maintenance.  From what I am reading it will be opdivo every two weeks.  I am not sure if he will be willing to try this since his side effects were so bad with the combo.   Can anyone shed light on the fact that it wil be just the one med and perhaps not nearly as bad?  I understand everyone is different--I am just not ready for him to "give up".  I feel he needs to at least try it and see how his body responds.  Any words of encouragement?  Thank you in advance!

Jim's wife

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ImMark's picture
Replies 5
Last reply 7/21/2017 - 11:18am
Replies by: Sharon93065, ImMark, J.bun

Hi everyone,

September 2016 I completed 3/4 ipi/nivo infusions for stage IV melanoma. But had to stop as toxicity became too much.

Following treatment I had my lymph nodes removed as they had reduced but still had Melanoma present.

Fast forward to yesterday and I received the results from an MRI which showed an 8cm tumour in my pelvis. My Oncologist now has me starting on BRAF as I tested positive for the BRAF gene.

I was sad that the ipi/nivo combo hadnt worked as well as I had hoped. But my Dr told me that it is still an option for me down the track as I had a response.

Has anyone gone to BRAF following a response to the ipi/nivo combination treatment?

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pplexed's picture
Replies 2
Last reply 7/21/2017 - 11:13am
Replies by: pplexed, Jamie1960

I recently had a 0.67 cm moll removed from my left torso the pathology report came back as follows: Consistent with compound nevi with severe atypia II.
Two mitotic figures can be observed at both levels of the lesion. The lesion extends broadly to the base margin. A nevoid melanoma cannot be excluded. Wide re-excision is recommended. Per my dermatologist he is telling me that he thinks this may be an in situ or stage 1 melanoma. What are the forums thoughts?

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Nemesis's picture
Replies 4
Last reply 7/20/2017 - 10:42pm
Replies by: stotesbery, Janner, Anonymous

Of moving from stage I to further stages. I can't seem to find a definite answer. Is there one?

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Ingekk's picture
Replies 7
Last reply 7/20/2017 - 8:48pm

Hi, I am 40 years old and live with my family in Norway. I found out in May that may melanoma from 15 years ago has come back. I have one large lymph on on my neck under my ear that is almost 3x3 cm large. PET scan shows no other activity. I am going to have a lymph gland removal on Wednesday. They are removing all lymph nodes, The muscle Sternokleido Mastroideus and everything else in the area. After this I am supposed to have radiation therapy for 6 weeks.
Is this the way to go? I asked about this new therapies, but they told me that it is not for me as it has not spread further?
I am really scared right now and crossing my finger that this surgery will make me NED.

Inge Kristian

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jennunicorn's picture
Replies 9
Last reply 7/20/2017 - 7:22pm

Since being told my TSH number was high 2 weeks ago, meaning my thyroid is underactive, I have noticed that I am getting a lot more fatigued than usual. Mostly in a weird foggy brain, feeling off, not quite myself, tired way. For those who have also experienced hypothyroidism, does this sound similar?

I will see the nurse practitioner tomorrow before my infusion since my oncologist is on vacation this week, and will let her know all of this. It usually takes until the end of the day to get the TSH blood test back, so I won't know if it's gotten worse until tomorrow evening. 

When others have started on Synthroid (levothyroxine), how long did it take before you felt more normal again? I am in the process of interviewing for a new job, I have my second interview on Friday, and if I get this job I really need to be back to more normal energy levels, so I'm stressing a little bit about this if you can't tell. 

 

Jenn - stage IV - Ipi/Nivo (Yervoy/Opdivo); now on Nivo maintenance

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