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.

Expand/ Collapse Topic
 
Replies By
View Topic
Bria12lane's picture
Replies 14
Last reply 5/17/2018 - 11:57am

I’ve spent a lot of time reading through posts on here and figured it was about time I started being a contributor and utilizing all of you as the wonderful resources that you are! 

I was originally diagnosed with melanoma in summer of 2014. It was located on the left superior helix of my ear. Fast forward almost 4 years later and I was diagnosed with a local reoccurrence in February. I had a WLE and SNB completed on 3/5. Margins and nodes came back clean. Margin however was extremely slim. It has been staged at a IIIB because of current characteristics as well has the primary. For everyone at OSU’s Wexner Medical Center it would normally be a no brainer for me to start Opdivo. The complication is that I’m currently pregnant. 25 weeks along. 

The oncologists at The James (OSU) suggested treating it as a primary and “watching and waiting” and completing full scans after the baby is born. They are hesitant to go forward with Opdivo after the baby is born because they think 6 months after diagnosis the benefits may be strongly diminished and the side effects may outweigh the benefits- as there isnt a whole lot of data out there where someone delayed treatment for so long.

I didn’t feel quite right about this and my dermatologist seemed to share my hesitation. I had a second opinion with Dr. Tarhini at The Cleveland Clinic and he suggested definitely still completing the Opdivo treatment after the baby is born. He went as far as to even ask if I was committed to continuing the pregnancy. He also said that if I completed the treatment he would even feel comfortable with having a 2nd pregnancy 2-3 years down the road. 

I didn’t want to go “fishing” for a contradictory opinion but had a feeling I would get one. I was hoping he would agree as the thought of starting Opdivo 4 weeks after having a baby is quite scary to me. 

I guess what I’m really looking for is-

-Has anyone experienced positive or negative effects after delayed treatment with Opdivo or Keytruda? 

-Insight into real life side effects experience with Opdivo.

-Experience with a Stage III or IV Melanoma during pregnancy. Did you have multiple reoccurrences? Did you have any subsequent pregnancies? 

Thank you! 

Bri

 

Bri Cagnoli

Login or register to post replies.

Jazzycat1126's picture
Replies 3
Last reply 4/26/2018 - 12:24am

I didnt ask what type of biopsy they did...but now I am nervous! Can you tell by the incision what type they did?

Jd

Login or register to post replies.

cjm22's picture
Replies 4
Last reply 4/25/2018 - 8:24pm
Replies by: Bubbles, GeoTony, BillB, iskitwo

Hi all - thought I'd update everybody with what's been going on since my fiance (!!!) was hospitalized last week. It's so comforting to hear from people who've gone through this. Telling the story seems to help.

He was discharged over the weekend. We have a very fancy home oxygen system now to help his breathing. So far he just sleeps most of the day, feels nauseous, limited appetite. He gets extremely fatigued with any exertion and can't go without the oxygen, although at rest he does alright at just 2LPM (pretty low trickle of oxygen there). With activity we boost it to 5LPM. We learned the name for what he's got going on in his lungs - lymphangitic carcinomatosis. Along with the blood clot, of course (which remains small and unchanged since they discovered it 1.5 weeks ago). 

There have been some small improvements since he started Taf/Mek last Tuesday. The tumour in his mouth is over 50% smaller than it was pre-treatment. His LDH has declined slightly (it had skyrocketed the week before). The respiratory therapist who came by to assess his oxygen usage yesterday thinks that his oxygen levels have improved since he was in the hospital, since at rest now he does pretty well even without oxygen (at the hospital he needed 6LPM even at rest in the hospital bed).

Still, we're not really seeing that hallelujah moment where he is back to himself. He's very tired and sleeps almost all day. He can't walk very far due to shortness of breath (I'm renting a wheelchair for him right now). The oncologist called me and said everybody is different, but someone in his condition can probably expect a life expectancy <6 months. What we can hope for now, she says, is that Taf/Mek will put him into partial remission for a few months. She doesn't think putting him back on immunotherapy is worthwhile even if Taf/Mek works for a little bit, considering he failed so spectacularly after the first treatment. She might change her mind on that if Taf/Mek put him into a nice solid remission for more than a couple months but she doesn't think that's likely with his tumor burden. 

Trying to take things day by day. We've been referred to palliative services and a home care nurse program. Looking for hope in the small things. It's hard to see him so scared.

Login or register to post replies.

tedtell1's picture
Replies 13
Last reply 4/30/2018 - 5:36am

Dear friends;

I had my first once a month dose of Nivo with the larger dose. No new side effects, just immediately noticed that my usual side effects came on faster and were amplified. The body aches and pain were pretty nasty and the fatigue....ugh. I have been skipping work the day of then going back to work the day after. It was very hard working yesterday feeling like I had been run over by a bull dozer. But better today, now I feel like a bob cat ran over me instead. Looking forward to just once a month though....another subject. Has anyone suddenly gone from being an easy stick to having difficulties? I have always been an easy stick/blood draw, had to get stuck 5 times on Monday. YUCKY!

Fight on everybody,

Ted

Ted

Login or register to post replies.

NatSR's picture
Replies 3
Last reply 5/8/2018 - 9:26pm

Hi,

I was wondering if anyone can offer me information or experience, I was diagnosed with stage 1a melanoma on my back in July 2012, which I had surgery for and no other treatment which I was very thankful for that it was caught very early on, I have now noticed 2 swollen lymph nodes in my neck, they are not huge but I can feel they are swollen, has anyone had a reoccurance or spreading of Melanoma stage 1a?

 

Thanks for reading x

Login or register to post replies.

Tset's picture
Replies 1
Last reply 4/25/2018 - 9:50am
Replies by: Tset

Hi all. I was diagnosed 3 and a half years ago with a Lenigo Maligna/ melanoma in situ close to the sternum of my chest. I was 34 years old. Had a WLE done with clear margins. When I got home and looked at this awful long scar It had a few freckles that were close to the scar and one that touched the scar a little. I have freckles on my chest already most of them small and patchy so figured that its just from where the skin was pulled together and it just so happens to have freckles around it. I have regular skin checks every 6 months with no issues or concerns. Ive kept a watch on these freckles close to the scar and the one that runs over the scar a bit. Nothing looked unusual or changed from what I saw.. During my recent 6 month skin check my dermatologist said she just wanted to remove that as one side looked a bit darker and that wasnt there 6 months ago. She said she wasnt concerend and was fairly sure that it was normal pigment change on the freckle on a scar which she said was common but would rather just remove it. My question is that if this happens to end up being Melanoma again would this be considered a local recurrance or a new primary? With this freckle being there from day one of my WLE of my MIS would that mean recurrance immediatly following WLE 3 and a half years ago or a new primary since the freckle was there already? Can a recurrance of the MIS happen in a different mole or freckle from the previous melanoma? I think had this freckle not been there from the time of previous WLE surgery that I would say a recurrance if the spot was new but snce its been there I dont know. Would love others thoughts on this issue and to hear if anyone had a similar expierence. Thanks so much.  Have a blessed day.

Login or register to post replies.

Scooby123's picture
Replies 4
Last reply 4/26/2018 - 3:19pm
Replies by: Scooby123, Bubbles, corgimom

Hi guys, I resent posted regarding pain in stomach on keydruda and vitamins to help when on treatment plus am going through meanupause and dealing with thyroid issues.

well after getting home from hospital again yesterday late night I had bloods again X-ray to find out why I was in so much pain in stomach.

 

Findings was despite I go and empty my Bowles regular excuse me for saying I was bunged up inside . The doctor showed me on X-ray. So hoping meds with help me go more and decrease pain am having.

Bloods still hemaglobiam going down plus B12 very low. Been put on b12 injections not giving me iron tablets as yet till Bowles better due to can make you more constipated. She not sure why hemaglobia is going down. So if I don't feel better in 5 days with pain scans early due to find if I have a bleed or some thing going on.

feeling so exhausted due to thyroid still not right and meanupause, aching joints.

Has anyone experienced problems with b12 low and hemaglobia going down with more infusions of keydruda or treatment.

cheers guys 

Scooby❤️

Login or register to post replies.

dessie's picture
Replies 8
Last reply 5/4/2018 - 1:58pm

More spam ... grrr..   btw has anyone on Opdivo find that the further you get away from your treatment, the more fatigue, itching , bowel upset and dizzy others have?  I am just about a week out of my 4th infusion but i find that the day of is iffy but not bad.. day 2-5 great but as i get closer to the next infusion (for me every other Thursday ), my side effect symptoms seem to become amplified... i am due again 1 week from tomorrow.  Just odd , but def tolerable considering the alternatives ....

Have a great day everyone

Dessie

Login or register to post replies.

tedtell1's picture
Replies 9
Last reply 4/26/2018 - 7:45am
Replies by: Anonymous, tedtell1, bjeans, Shelby - MRF, Bubbles, ed williams

Hey admin;

Anything you can do about the spam? I really enjoy this sight for support and knowledge but the spam makes it very difficult for me to even find the legit posts. Kind of worried that this sight might have malware/harmful viruses etc.....the way things are going. I don't really want to stop checking and using the site but kind of worried...

Thanks,

Ted

Ted

Login or register to post replies.

TrishW's picture
Replies 9
Last reply 4/25/2018 - 1:51pm

Hi All, I have been lurking on this board a couple of months now. So much awesome information and so many well informed people!

My husband has nodular desmoplastic melanoma. He just took his 3rd dose of Opdivo. The pre-lab work showed dropping cortisol levels. The office just called today and wants to put him on Prednisone. Doing some online research tonight I'm seeing the endocine side effects can end up as permanent problems :o(

Just wanted to hear from anyone who has had these side effects. How they were dealt with and what the long term implications were.

 

A little about me- My name is Trish. I am a Pediatric RN. Have worked in hospitals for 35 years. I have had an eye opening experience being on the other side of patient care with this diagnosis 

My Husband Wally's history-Lump on back fall of 2017. Primary Dr said no problem fatty lipoma. Seemed to get a little bigger and firmer so asked to have it removed. Referred to dermatologist who did extensional removal 12/17 Sent for pathology. Returned with probable MPNST sarcoma. Went to sarcoma surgeon Dr William Tseng at USC Keck. Residual tumor removed with WLE 2/6/18 Secondary pathology at Keck diagnosed Desmoplastic Melanoma. Original tumor was 3cm, spindle cell neoplasm with mitotic rate 24 (that one seems to always freak the Dr's out) So basically a big,thick highly active tumor. No SLNB biopsy was done by the Derm and with the second surgery (WLE) the Dr felt the tumor had been too cut up to do one and a specific path would not show up. Also at the time they thought they were removing a MPNST sarcoma. Currently NED seen on CT/MRI/PET. Had an US guided needle biopsy of a nodule on the Thyroid today so awaiting results on that.   

Thank you all for the wisdom you share on this board. Celeste your blog is amazing-soooo much info in one place! 

Thanks

Trish

 

 

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 1
Last reply 4/27/2018 - 9:33pm
Replies by: GreenWally

Hi all, had a biopsy done two weeks ago pathology report came back with Complete excision is recommended, had it taken out 4 days later Pathology report came back with the following.

Malignant Melanoma with invasive naevoid component (i-e. naevoid-type malignany meloma), Sub-type Superficial spreading Melanoma, Breslow .95mm, Dermal Mitotic rate 3/mm2, Clark level 4. 

Made ther mistake of googling lol and naevoid kept coming up as rare.

In two minds one saying this is nothing to worry about at all and the other saying is this serious. 

Been referred to clinic can anyone tell me what the next step will involve. :)

 

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 2
Last reply 4/27/2018 - 10:06pm
Replies by: majahops, Janner

Hi I just got my pathology report and I need help understanding what it means. 

Compound melanocytic Nevis, dysplastic type, severe

comment: re-excision is recommended. Deep and lateral margins are involved. 

description: enlarged melanocytes are arranged as solitary units and as nests at the dermo-epidermal junction, as occasional solitary units above it, and within the papillary dermis as nests, cords and strands in association with fibroblasts, telangiectases and an inflammatory cell infiltrate with lymphocytes, histiocytes, and melanophages.

I am scheduled to get a wide excision. This was a shave biopsy which I now know is not reccomended in here but unfortunately I did not have the expertise of the board before I went into the dermatologist. 

So the next level would be melanoma in Situ correct? What happens if the wise excision doesn’t get it all? Do you have to get another one? Just pretty freaked out because they called at 5 and in the shock of it all I didn’t get all my questions answered. Of course when I composed myself they were closed and not answering the phones. 

Login or register to post replies.

iskitwo's picture
Replies 6
Last reply 4/25/2018 - 2:52pm
Replies by: cjm22, Bubbles, iskitwo, JW

I had my lung biopsy last week. Thanks to those who made me feel more positive about the decision to go head and do it!! Sometimes you wonder if you are about to do a surgery that turns out to be nothing (although nothing would have been great....don't get me wrong) This is the only spot of concern that has shown up on my scans at this point and surgeon is saying that it was all removed with clean margins...YES!! They will send off for BRAF test....Just wondering if this ever changes because when I was first DX in 8/2016 MD Anderson did say that I tested positive. Hopefully I will have appointment soon with my oncologist to where we go from here. Very open to any questions I should be asking.....I feel like my brain is spinning at this point!!! Thanks to all those who have posted such great info for all of us new to the ugly beast.

Missy

Login or register to post replies.

JW's picture
Replies 8
Last reply 4/25/2018 - 10:10pm
Replies by: JW, Bubbles, Janner

I'm trying to think through the information I've been reading in hopes of asking intelligent questions at my husband's upcoming appointments with melanoma specialists.  

Could any of you confirm or refute my understanding of a few things (or maybe just add more to think about)?

True or False:  Anorectal mucosal melanoma is highly likely to recur and/or spread even if he has additional surgery to get wider margins. (By the way, we're still unclear as to whether it's realistically possible to get wider margins anyway -- surgical consult in 2 weeks.)

True or False:  Local radiation could be sufficient to knock out residual cancer cells if additional surgery is not done.

True or False:  Immunotherapy is the best possibility for preventing recurrence regardless of what else has been done or not done.

True of False:  A relatively low percentage of individuals respond to immunotherapy (but you don't know until you try).

Thanks for any input from anyone!

Background info:  My husband was diagnosed with anorectal melanoma 6 weeks ago when he had a "polyp" removed from his anus that turned out to be 3 melanoma tumors.  The largest was about 2 cm diameter and 11 mm deep.  4 weeks post-surgery he had a PET/CT scan which shows no distant metastis but a small amount of activity in the area of surgery -- inconclusive as to whether this is post-surgery inflammation or residual cancer.  One small lymph node showed up that was characterized as reactive.  

He has appointments scheduled with melanoma specialists at UT Southwestern and MD Anderson within the next 2 weeks.

JW

Login or register to post replies.

Login or register to post replies.

Pages