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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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.

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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

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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

 

 

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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.

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Susanlee528's picture
Replies 9
Last reply 4/24/2018 - 10:44pm

I’m  having an MRI of my brain today. I just had my fourth Opdivo treatment and I’ve been having some problems with blurry vision and dizziness and it’s worrying me a lot. Has anybody on Opdivo had vision problems or dizziness as a side effect? I’m really hoping that it is a side effect and not something worse! I’m trying not to worry too much because I know I won’t get any results until next week, and I don’t want to freak out all weekend!

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mbrrna's picture
Replies 13
Last reply 4/24/2018 - 8:52pm
Replies by: mbrrna, CindyJ, Bubbles

Hello. My beloved 84-year-old mom was finally diagnosed this past December with acral lentiginous melanoma on the bottom of her foot, after being misdiagnosed for over two years.  We don’t have the pathology report yet (even though she had the WLE with 2cm margins and skin graft surgery at the beginning of Feb) but this is what we do know:

- Minimum tumor thickness 1.9 mm with ulceration present and mitotic rate of 1.  (Visually, the tumor covered the entire bottom heel area of her foot, so it was pretty radical surgery.) 

- CT scan of the abdomen shows a right lower quadrant mesenteric mass measuring 1.8 x 1.3 cm. There are also abnormal enlarged lymph nodes in the right groin and along the right external and common iliac chains with markers in the right groin, 2.3 cm and right common iliac, 1.4 cm.

- PET scan confirmed FDG avid nodes in the right inguinal region, right iliac chain, ileocolic and right retroperitoneum, in keeping with nodal metastases. The doctor says surgery is not an option as there is too much involvement on the right side.

- Chest and head CTs clear.  Blood work normal.

I'm assuming this is kinda good news though, meaning the cancer has not spread to any organs, or am I being overly optimistic based on the type of melanoma, the length of time she's had it, and her age?  Her doctor is recommending Keytruda, but doesn’t want to begin treatments until her foot has healed more.  Should I be concerned about more delays before she gets treatment?  Is melanoma only terminal once it spreads to the organs or is lymph node involvement enough?  Isn't there a risk of it spreading more if we don't get on it asap?

Thank you.  I can't ask the doctor questions in front of mom, as she doesn't want to know, but I'm trying to educate and prepare myself for what's to come.

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Anonymous's picture
Replies 2
Last reply 4/24/2018 - 11:52am
Replies by: Tset, Jamie1960

Hi. I had a lentigo maligna( melanoma in Situ) removed by a WLE 3 years ago on the center of my chest, I was 34 years old. I have had freckles on my chest most of my life. After the WLE 3 years ago I still had a few freckles close to the scar an one on the scar where the skin was pulled together. I have now noticed a few tiny black dots in the freckle that has been on the scar. The black dots weren’t there 6 months ago nor a month ago as I always look. My question is since these small freckles( light brown in color have been there since the excision and one is now turning into a melanoma I feel certain ( go to derm tomorrow for my 6 month check) would this be a local recurrence or a primary that just happens to be on the scar. It is a pretty small freckle. Thanks,Tset

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Wife_WilliamR's picture
Replies 20
Last reply 4/24/2018 - 9:42am

My husband became Stage IV in August 2014.  He tried 3 immunotherapy trials IPI/Opdivo combo trial, TIL therapy plus 4 doses of Keytruda, Urelumab/Nivolumab trial, then chemo (Temodar) and just finished his 4th immunotherapy trial (had 4 treatments of the Anti-lag 3/Nivolumab but showing progression).  The Temodar is the only thing we saw signs of tumors shrinking (shrunk some but not all).  Now they are recommending chemo again – taxol and carboplatin.  Also note he is NRAS positive.  Please share any info that you feel could be a next step for him.  We are willing to travel anywhere!

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Scooby123's picture
Replies 2
Last reply 4/24/2018 - 1:28am
Replies by: Scooby123, WithinMySkin

Hi all, 

After posting regarding keydruda and stomach pains. I ended up at hospital I have had bloods done at my GP the reason was for due to the fact I am on treatment, going through menapause and a thyroid issue I wanted to know if I could check my calcium, magnesium due to in my family all the females have developed oestoporosis when going through change. I just want to help keep me strong for treatment and any other help with my other issues. I do eat as well has can be.i do have oesteoarthritis which I devoloped in my 20is.

So results from bloods was my thyroid was still out so needed to go from 75mg to 100mg. My HB blood was on the low side gone down again from 115 to 96. So was concerned about anima. My stomach pains they think it's treatment related but my stools are very dark. Gone from one extreme to other in the last 3 weeks. I have had 12 rounds of keydruda and working well on last scans. I am concerned about the stomach and stool isues and anima . 

Any one with similar issues advice and experience would be appriciated. I was sent home due to bloods ok despite HB falling again I believe if it goes lower then 60 would need blood transfusion only from what I have read. But until I really know what's defiantly causing it then we can treat it. Will be seeing my consultant Thursday and treatment schedule for following Monday.

Scooby❤️

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Anonymous's picture
Anonymous
Replies 0

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. :)

 

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jennunicorn's picture
Replies 12
Last reply 4/23/2018 - 10:49pm

Hi friends! 

I am asking for my mom who just underwent D&C surgery and we're waiting pathology results. But, for the past 6 months she continues to lose weight, she is down to about 100lbs. So, I am trying to get some ideas of ways to help her gain some weight. She has an appetite, so the weight loss is a mystery right now and she is open to trying any easy meals or snacks that could help her put on a few pounds.

I told her to get ensure shakes, which she has been drinking but is getting tired of them.

Was hoping if anyone here has dealt with a similar issue you might have some good suggestions.

 

Jenn - stage IV NED - Completed Ipi/Nivo (Yervoy/Opdivo) + surgery

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JW's picture
Replies 18
Last reply 4/23/2018 - 10:37pm

My husband was diagnosed with mucosal (anal) melanoma 4 weeks ago after a colorectal surgeon took out what was supposed to be a polyp but turned out to be 3 melanoma tumors.

He finally had a PET scan on Friday, and we will finally learn his stage at his oncologist appointment this week (though we know it is at least the worst level of stage 2, since there were 3 tumors and the largest was ulcerated and 11 mm deep).

We already have a second opinion visit scheduled with a melanoma specialist for next week, but I am wondering if we also should make an appointment at MD Anderson asap.  My husband is a teacher and wants to wait until June.  

I at first thought that was ridiculous, but as I've read been reading on this site and others, it looks like the treatment process is a bit slower than I would have expected, and many people pursue seveal opinions before starting treatment.

So, maybe it is not so unreasonable to wait to make the trip to MD Anderson when it is more convenient?  We also have an 8 year old daughter, and waiting until she is out of school would be easier in terms of child care, as well.

Is that stupid, though?  Should we hurry on over to MD Anderson as soon as we know the stage?  Will getting there 6 weeks sooner be likely to make a difference?

Oh, and by the way . . . when and how do you tell your 8-yr-old that her dad has cancer?

Thanks for any input from anyone!

JW

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Skijules22's picture
Replies 2
Last reply 4/23/2018 - 6:18pm
Replies by: TomW, dessie

Hi all-

 following up with my drs this week but really worried about what’s going on. I had stage I melanoma in 2005 and have been checked and healthy since.

 

for the last 2 months, I have been dizzy and fatigued. Ended up in ER in Feb- brain/neck MRI and chest X-ray normal, other than incidental findings of mucous retention cyst in sinuses and calcified nodule in lung. Noticed enflamed inguinial nodes 2 weeks ago and saw GYN yesterday. No masses seen but she is concerned w my melanoma hx and has my anxieties up. 

I am 38 with2 small kids and am catastrophizing. My last skin check was in May2017. 

am I right to be concerned w a clear check last year? (I’m terrible about knowing what’s new/different on my own).

I’m worried that perhaps the melanoma is internal andneverwas visible and could be quite far along. 

 

Any questions/concerns I should bring up Monday?

 

thank you all so much 

 

Julie 

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Raco's picture
Replies 5
Last reply 4/23/2018 - 2:53pm
Replies by: bjeans, Susanlee528, Hukill, Raco, Anonymous

Hi All:

I had my second Opdivo treatment, this time in 30min. Thursday April 19, 2018

Went very fast, stopped at grocery store on way home, once Home Had some dinner than fell out.

fatigue was way worse than my first treatment,  

went to sleep at 6:30pm Thursday untill 1130am Friday only up a few times for bathroom and meds (17 Hours)

once up, drank some coffee and got a bangle, fell back to sleep at 1:30pm and sleep till 7:00pm. Got up feeling sick in stomach for about an hour but gone now.

Back to sleep at 1030pm and now up at 1:30am Sat writing this.  What a dayindecision

Hope Saturday is un-event-full.

Thanks for listening Guys

 

  

 

 

 

 

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