Stage IV Melenoma and Chron's

Posted By
Anonymous
2/6/2019 3:13pm
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Replies: 6

My husband was diagnosed with stage IV and he has active Crohn's.  The doctors say that the good news is even thou he has two tumors in his thigh, they are not on the bone and they have not found any other tumors on any other part of his body.  They say this is good news because it's not on any bones or organs.  He started Stelara last week and will starts immunothereapy very soon.  After the Stelara infusion his thigh started to hurt.  he says it feels like the bone hurts and now he fears the tumor is on the bone or causing pressure on the bone.  He didn't have any pain before and now he can brely walk.  Since he's a vetran, we're going thru the VA and no one is giving him a straight answer on what to expect or do.  he goes for another MRI next week and will see the oncologist as well to discuss the immunotherapy.

has any one else had this happen?  What is his survival rate?  

Anonymous - (2/6/2019 - 4:19pm)

Hi, I am new to this Board as I was just recently diagnosed with Melanoma (a recurrent Melanoma since close to same area as last).  It is deep, so doesn't sound favorable.  But no official staging yet as docs are reviewing path reports and slides from original melanoma from 2013 and this recent one just biopsied a week ago.  Plus I have PET CT scan scheduled for the morning.  And I too have Crohn's.  I am sorry to hear about your husband.  I was just diagnosed with Crohn's in 2016.  I haven't been on any meds because Gastro didn't want to because of my history of melanoma.  He said my Crohn's was mild then.  It was limited to small area in terminal ileum.  Anyway, it has progressed since 2016 and I don't know what they will do for medication.  Having seen my new Crohn's specialist yet.  First and foremost, oncologist wants all my results in from this Melanoma and once we see where things are with that, then I guess Gastro Doc and the oncologist will work together on a treatment plan for both.  Having both Melanoma (or any cancer) and Crohn's would seem to be quite a challenge from what I understand when it comes to treatment as many of the standard medications have risk of cancers.  I don't want to scare anyone...heck, I am scared to death right now.  But I would encourage you to get his oncologist and gastroenterologist together to come up with an appropriate treatment plan.     

My brother works in pharmaceuticals and has for many years.  He has a colleague that says for Crohn's, Entyvio is very selective and works in the gut in a targeted fashion.  It is given as an infusion (30 minute infusion).  Entyvio will be released as an injection later this year.  And says that drugs llike Humira and Remicaid have "black box" warnings and are, I believe, immunomodulators which you wouldn't want anyone with cancer taking.  I don't know much about Stelara.  But I would not wait until next week...I would call the doc to let them know about the pain immediately.

When was he diagnosed with Melanoma?  What are the specifics if you don't mind sharing?  Like how deep was it?  Was it a mole or nodule?  Is / was it just confined to thigh?    

Wishing you all the best.

 

 

Anonymous - (2/6/2019 - 4:35pm)

He was originally diagnosed in 2015 when a mole on his temple turned to melenoma.  he was diagnosed with stahe 3 because of how deep it was and it his the lymph nodes.  After three surgeries, and six months of radiation he was in remission.  As for the Crohn's he was in remission fom 2010-until this past November.  That's actually how we found the melanoma.  He had a severe Crohn's attach that landed him in the hospital.  Due to his history of melanoma, his doctor sent him for an MRI and PET scan before deciding on how she weanted to treat him.  That's when we discovered the two tumors in his leg.  They did a biopsy and diagnosed him with Stage IV melanoma.  The tough part with the VA is they drag their feet on this stuff.  Because of the severeity of the Crohn's, his doctor wnats to treat it as quickly as possible.  So she decided to put him on Stelara.  Stelara can cause melanoma but since he already has it, the benefits are greater than the risks according to her.  The Stelara can also supress his immune system.  He is supposed to begin immunotherapy in the next few weeks to treat the melanoma but first he has to do another round of scans.  His oncologist has to keep an eye on one of the tumors in his thigh because it is close to the bone.  Pluse she fears he may have smaller tumors that the scans have not detected yet.  With the Stelara and the immunotherapy i have been told that he basically won't have an immune system until this is all over.

I honestly don't know how deep the tumor was but I'm guessing because it's not on his skin but in the leg tissue/muscle it's a nodule?  Right now they are saying the cancer may be in his lymph nodes in his stomach but it's hard to know because it could be inflamation from teh Crohns, and it's in his thigh.  But this was all almost a month ago!  We will have new scans done next week and will talk to the oncologist next week as well.

Dear Anonymous,

Continued prayers for your situation.  Keep us posted on how things are going and results of the scan next week.  I don't know how the VA operates, but keep pressing forward.  Ask tons of questions.  Become informed.  As I am working on myself.  My MRI for the Crohn's identified my tumor as not a pillar cyst and needed to be biopsied due to my melanoma history.  Not for that, who knows how long this thing would have been on me, wreaking even more devastation on my body that I know it already has...even though I feel well.  

Hang in there and let us know how things go next week.  

Beverly

 

Hello both anons.  

As it seems you are both new to melanoma, but simultaneously dealing with auto-immune related disease, I thought these posts might be of interest to you.

This is a primer that I put together regarding current melanoma treatments generally:

https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=primer  

Here is an artcle regarding immunotherapy when dealing with a pre-existing autoimmune disease with multiple links within:

https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/03/tolerating-immunotherapy-for-melanoma.html  

Hope that helps.  Ask more questions as you need.  There are many kind and knowledgable peeps on this forum.  I do recommend that you pick a "name" for yourself.  Needn't be your real one.  But, if we on the forum are able to recognizie who YOU are, advice may be more meaningful and threads between folks - less confusing.  Up to you.  Just a thought.  I wish you both my best.  Celeste

Hi Bubbles (Celeste),

I inadvertently replied as Anonymous yesterday.  Glad you pointed that out.  I'm Beverly. 

Thanks so much for the links to those articles.  I skimmed over the first one and will read in more detail this afternoon.  Looks to be very helpful. 

I read over your profile info - you are quite the fighter and an inspiration.  I know more questions will come.  I still have tons of unanswered questions as I am still waiting to hear back on the consensus from the experts on my path reports and slides (past and present), of course the upcoming WLE and SLN biopsy procedure on the 22nd.  Would be waiting on results of PT CT scan scheduled for this morning except I found out yesterday at 5:30 pm from the hospital that my insurance denied approving the scan.  They say they hope to do the peer to peer today (Doc was in surgery yesterday afternoon) but I can't imagine why a denial (money driven I'm sure) based on what my path report says and history of past melanoma.  I don't know what information gets sent initially to the insurance company when asking for authorization?  Do they send the path report?  Medical history?  Or what when asking for approval? 

I need to seek out a local advocate to help me navigate all of this (if there is one locally).  But I do know after looking through this website and the forum that there is a wealth of information and knowledge that will be so helpful.  So many amazing and uplifting stories as well.  Just trying to weed through everything, different experiences and results, etc. is quite overwhelming.  If I could just get my scan done and results and get the surgery so I can get some answers, that will clear some of the muddy waters.  Without a miracle, my research shows that with the depth of my melanoma (and other details) there has to be spread somewhere. 

Further, I am so frustrated because I brought to the attention of my dermatologist this lump when I first noticed August 2018 by the scar from my Jan 2014 melanoma WLE surgery.  She assured me it was a pillar cyst and absolutely nothing to worry about.  I should have insisted it be cut out then.  But I was assured it was a typical pillar cyst.  I didn't have enough knowledge back then to realize that it could be a real problem.  The Derm should have known.  If I had not had the MRI from my Crohn's in December 2018, it likely would still be there.  I got my medical records from the Derm from last year and this year and it apparently doubled in size (width), even though id didn't appear it had upon the naked eye.      

Seems like things move at a snails pace...meanwhile cancer doesn't wait on anything. 

Thanks again!  And so happy you are in a good place with all of this!  Praying for continued blessings.       

Hukill - (2/7/2019 - 12:47pm)

I am a disabled vet and receive treatment at Audie Murphy VA Hospital in San Antonio. I was diagnosed stage IV in June of 2016 with 7 tumors in my lungs. I was the first vet to receive the yervoy/opdivo combo at the hospital as it had not been approved for long and my overall health was good enough to risk the side effects. Due to the estimated cost of the drugs a finance board at the hospital had to sign off on my treatment. My immune system reacted great even though with many side effects but none that caused me to miss a treatment. I actually still worked full time but did ususally miss 1 day a week during the combos. At 14 months I was NED and continued on treatment for another year. In August 2018 I was offered to stop treatment as some data is showing continuing after 1 year of NED may not improve anything. I had scans last week at 6 months after treatment and they were clean. It is hard to say what the survival rate can be, depends on how well the immune system reacts. I had scans 8 weeks after the first treatment and had great results with 6 of the 7 tumors smaller. So many people fear the side effects but I was glad when they appeared, my immune system was having a reaction. I have had nightmares with the VA for 16 years but my cancer treatment has gone very well. I think because I was the first on the combo I was kind of a case study so they made sure everything went well. I don't know if this will help but with intestinal problems being one of the main side effects I ate PB&J, bananas and foods like those to help me stay "thick". I am also on hydrocodone for other pain management which I think helped me not get poop problems. But I also developed a rash on my arms and chest the second week and still have it but it has never itched or burn like many others have had. Good luck, this board is a place to visit everyday, so much helpful info from some very smart people.