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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jjk17's picture
Replies 2
Last reply 6/7/2018 - 2:32pm
Replies by: jjk17, aquamak

Looking for some insight. Yesterday was another 3 month check for me. I am 7 months post-op from my inital surgery and I am currently now on Opdivo treatment #7. Stage III C

During my ultra sound yesterday they found an abnormal atypical lymph node in my groin area (which is right around) my main surgical site. Of course, I am panicing some. They just want to watch and wait for another 3 months until I go back. They don't want to take any cells as of right now, becasue I am already on my treatment plan....

Anyone else have this......

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Suebette4467's picture
Replies 11
Last reply 5/27/2018 - 11:27pm

Hello I am new. Diagnosed on April 2,2018. Had surgery April 24,2018. Now being told to have paratoid gland removed and Complete lymph node dissection. And then immunotherapy. I am scared and just wanted to know someone who has gone there same! Thanks

Susan Bette Hall

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mrsaxde's picture
Replies 7
Last reply 5/26/2018 - 4:56pm

Well, I spent the last three days getting scanned at NIH, and met with my doctors yesterday. I got a decidedly mixed bag of results.

The good news is there is nothing new growing anywhere. The so-so news is that out of the two tumors in my chest lymph nodes, one is slightly smaller but the other is slightly larger. They told me during treatment that this first follow up would not give them definitive news about my response. So right now I'm at "stable disease."

Now the less than thrilling news...I have two small brain mets. One they found on the MRI they did before treatment, and they hoped that it would resolve from the TIL therapy. But it didn't. The other was also apparently there before, but it was small and situated in such a way that Dr. Shindorf said it looked to her like a blood vessel.

So now it's on to radiation for the brain mets, and to hope for better news at my next follow up. Of course this news isn't devastating, but I would have liked it to have been better.

I hope everyone has a pleasant weekend!

-Bill

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Anonymous's picture
Replies 2
Last reply 5/25/2018 - 8:42pm
Replies by: Anonymous, Mat

Hi everyone,

I am new to this board but love the positivity and support I've come across! My husband is 28 and was diagnosed in April with a stage 1A melanoma on his side. It was caught early, at his annual skin exam, so treatment consisted of a wide local excision and now dermatology check-ups every 3 months. He has been getting remicade (infliximab) infusions for the past 8 years, which started shortly after he was diagnosed with Crohn’s Disease.

After doing some preliminary research regarding infliximab and other anti-TNF biologic medications, he consulted with his gastroenterologist and an oncologist to discuss whether it is still in his best interest to take remicade, and ultimately he decided to continue the remicade for now. While there is of course no way of knowing why he got melanoma, he is fair skinned and despite his best efforts to protect his skin, he has been sunburned a few times in his life. He also has some family history, as his grandpa and uncle both had early stage melanomas removed.

I found a couple threads on this board about infliximab and melanoma, but many of them are several years old, so I’m wondering if anyone out there has been in a similar situation and decided to continue or stop taking remicade, or has any other relevant insights to share on this matter.

Thank you!

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AMcReader's picture
Replies 6
Last reply 6/1/2018 - 9:10pm

I’m had my second dose of Opdivo  a few weeks ago and am wondering if anyone else has experienced hair loss from Opdivo. If so, can you tell me when it started and how long it went on.

I also had SRS to an area in my brain, however, that was 7 weeks ago and most of the hair in that area has already fallen out. It seems like I’m losing hair from other areas on my head but between the Opdivo, SRS and the fact that I just had a baby in February (meaning I’m at the post-pregnancy hair loss time)...it’s hard to figure out the cause.

Thanks in advance for any insight!

Amanda

Amanda

Stage IV — one brain met (resected via craniotomy 3/1/18 and subsequently treated with SRS) and two small lung mets. Started Opdivo 4/16/18.

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Anonymous's picture
Anonymous
Replies 4
Last reply 5/25/2018 - 10:12am
Replies by: Janner, Anonymous, dessie, KellyH

I had a suspicious mole removed on May 8, 2018. It has now been 17 days and I haven't received a phone call for my results.

I think I remember the dermatologist saying I'd get a phone call back within 10 days if they found cancer. 

Does no news mean it was probably benign?

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Just had my CT scan and looks like my liver Mets increased in size, my lung met decreased in size , no new Mets, but intusseption in intestine.  Plan is back on keytruda and mekinest portion of targeted therapy I couldn’t handle the tafinlar, scan again in 8 weeks.  I’m worried with this mixed bag of results and the intestine issue. Any advice is appreciated.

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Replies by: VinceMart

Hello I am Robyn wife of patient with Stage 4 Melanoma. He is BRAF positive and responding well with significant lung tumor regression since TAFINLAR/MEKINIST treatments were started in late March. Dosage adjustments have been necessary due to severity of side effects. He has been back on full dose (300mg TAFINLAR and 2mg MEKINIST for about 10 days but has developed an awful cough. Anyone have a similar reaction?

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Anonymous's picture
Anonymous
Replies 3
Last reply 5/30/2018 - 7:27am
Replies by: Anonymous

I am a staunch believer in cannabis for helping with my Stage 4 w/lepto. So far brain and spine scans have been clean for quite sometime. I was diagnosed on 9/26/16, and was given two months. I'm still here doing well feeling good, and enjoying life. Cancer to me was beautiful, it taught me how to appreciate my life and the people around me. So oddly enough I refer to my cancer as a gift. To get down to brass tax. I take the BRAF combo, the Opdivo, and every night I take a 50mg CBD capsule from NYS Dispensary, along with a THC vaporizer from them as well. I have much success and I have stumped the folks at Sloan, I now want to take my "holistic" treatment to the next level. Has anyone gone through the whole Rick Simpson Protocol, I'm sorry if this is a reoccurring question however it's tough to sort through people trying to sell me illegal passports etc. Also if anyone was curious I'm the guy who got vitiligo on my parts from Opdivo. God Bless, Never Give Up and Fight the Ef on!

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Replies by: Annalive, Bubbles

Hello All,

After 3 1/2 years of remission I had a 4.5 cm Melanoma removed from the lining of my stomach wall. I am currently N.E.D. however, as this is the 3rd re-occurance in 10 years it is obvious that something systemic is needed.  My Onco did genetic testing nwhich found that I have 0% PD-L1 so Opdivo is out.  I am BRAF pos so could take BRAF and MEK inhibitors.  Quite honestly any pharmecutcal scares me.  And, If I am NED then how do we know if it is working as ther is no tumor to track.  So, my question is... do any of you know of bio-markers or tests which would track something in my body to indicate if a protocol is working for not?  If I am going to endure a treatment then I would at least like to have some way of knowing it's validity.  I have had 3 surgeries over the past 8 years... plus the original sutaneous melanoma which was removed 25 years ago.  I have never taken pharmecutcals but have taken a more Integrative path using hypethrmia, Highdose Vit C, Mistletoe,etc... Any insights much appreciated.  Thank You ,  Ann

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Jubes's picture
Replies 3
Last reply 5/25/2018 - 1:55pm
Replies by: Mat, Jubes, Bubbles

Hi friends! 

Just checking in after long absence due to full time work and family and generally enjoying life! Had PET and brain MRI last week and no signs of any cancer 18 months after lung resection and 3 years after stopping Keytruda. 

My PET lit up like a Xmas tree with my arthritis/spondylitis through my entire body which of course is also quite painful most of the time so my onc has suggested having another go of infliximab which worked a treat last time. However whether a coincidence or not, that’s when the cancer in my lung started growing again. Now that’s been cut out he thinks it’s worth another try. Any thoughts? At the moment I am managing full time work and most everything I used to do. I suppose I am worried if I do the infliximab it might allow the cancer more room to grow and if I don’t and the cancer doesn’t return and I live longer, the arthritis will really affect my later quality of life...

anne-Louise 

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marta010's picture
Replies 4
Last reply 5/24/2018 - 2:57pm
Replies by: marta010, MovingOn, Bubbles

Hi all - just wondered if those of you who experienced adrenal insufficiency as a side effect of Keytruda ever considered taking a stress dose of steroids in conjunction with the infusion to counter the potential of adrenal insufficieny. My husband has had several bouts of adrenal insuffciency over the past many years and has been on hydrocortisone replacement therapy (20mg daily) during this time.  He ended up in the hospital this weekend again the same situation after his 2nd Keytruda infusion.  He is tapering off the high dose he was on in the hospital and will be on a new maintenace/replacement dose of 30mg daily to provide some additional relief as he resumes Keytruda infusions.  One of the docs suggested that he increase his hydrocortisone dose on the weeks he has his infusions (3 x normal for 3 days/2 x  normal for 3 days) - not sure if any of you have done this.  Also curious how long of a break you may have taken when experienceing adrenal insufficiency - we're delaying his next infusion by 2 weeks to see how his cortisol levels react.  Thanks for your input.

Ann

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MelanomaMike's picture
Replies 6
Last reply 5/23/2018 - 8:31pm

Hi Family, boy, another day of no appetite, i cant even eat Saltines for cryin out loud, its been atleast 5 or more days since my last normal meal, i gotta have them check me out, ive "muscled it" through long enough & nothings gettin better, i went out & got me the THC/CBD oil, the bottle/dropper type it did take care of my body pains but didnt help my hunger "surprisingly"...im so weak, and of course my lack of appetite could be from my tumors in my lungs, not nessesarily from the Yervoy & Opdivo...i need a lil' TLC from the team, get me back on track, i cant handle the nausea anymore & dry heaves...wish me the best, ill have my father in law take me...Take care guys...Mike

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jnell77's picture
Replies 2
Last reply 5/23/2018 - 10:43am
Replies by: Tset, guynamedbilly

Hi. I had a small itchy mole removed last week via scrape biopsy. To my doctor, and my, surprise it came back melanoma. Now a week later I am scheduled for a wide excision of the area and a sentinel node biopsy scheduled for this Friday. Three months ago I lost a friend to Melanoma, she did not get scans yearly as she was supposed to, and I am scared to death. My path report so far only says a Clark’s of at least IV and a depth of at least 1.0. The scrape did not grab a clean margin I suppose? My surgeon, on consult, did not seem very concerned and he was basically telling me that I should try to settle myself a little. He did a quick check of axillary and inguinal nodes and didn’t say much. So, now everywhere he checked I feel like it’s bumpy and swollen and painful....I think my mind is playing tricks. Has anyone else had the feeling they are going crazy because They assume that the cancer is everywhere? 

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patrick212's picture
Replies 15
Last reply 5/24/2018 - 2:18pm

Hi – I’ve been browsing this board for a while, so it’s probably time to come forward and say hello!

Pardon me if my lingo is not quite proper…  I was diagnosed with stage IIIc metastatic melanoma (T3cN1aMx) in February 2014 at age 38. The tumor on my back was removed, and later, so was a huge patch of skin. I underwent a sentinel lymph node biopsy under my right arm, which wound up being positive for melanoma. I soon had the remaining lymph nodes in the area removed -- 2 out of 12 of which contained melanoma.

At that time, they also discovered a few cancer cells in the tissue surrounding the lymph nodes, so I had a few weeks of radiation which extended from the site of the initial tumor, under my right arm, and partly across my chest.

My first post-surgery/post-radiation CT scan that October showed no evidence of disease (yayyyyyyyyy!), and that happy trend continued for four years, until two months ago.

After a routine CT scan in March 2018 (at age 42) showed a large abnormality under my LEFT arm – a needle biopsy revealed it was a melanoma recurrence. I went back into surgery last month to remove it, as well as the other lymph nodes in the area, none of which contained melanoma.

My surgical oncologist recently offered Opdivo as a treatment option – though he said that, personally, if he was in my situation, he would play a “wait-and-see” approach instead. Of course I’m not a medical professional, but my thinking is that if I have rogue cancer cells in this one lymph node that suddenly multiply after four years of NED, it seems likely that I probably have other other melanoma cells hanging out somewhere in my body.

Have you been in a similar situation? What did/would you do if you were in my shoes? Thanks in advance for any support or advice you may have.

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