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
CallMeKate's picture
Replies 14
Last reply 9/8/2018 - 1:01pm

So when I was diagnosed in May with 1B, my dermatologist said that I'd need to have a skin check every 3 months for the next two years, every 6 months for the following two years, then annually after that.

At my appointment yesterday, he said that I could do every three months for the next year, six months for the following year, then annually.  Thoughts?

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 3
Last reply 9/6/2018 - 3:25pm

My daughter had a punch biopsy yesterday.  Does anyone know how long it takes to get results.

 

Thank you.

Login or register to post replies.

mmmm's picture
Replies 12
Last reply 9/8/2018 - 8:01pm
Replies by: Mat, mmmm, ed williams, Mksews, Sissi, Linda5, Anonymous

hello everyone! 

ive just started the taflinar/mekinist combo as stage 3b for a year in Canada and was hoping to get some advice from your collective experiences. I just started a week ago, so no side effects yet but have been warned by my doc and pharmacist, and have read through most of the posts on here regarding fevers, rashes, etc. 

one of the main things im wondering about is how this will affect my work abilities. I've already had to take a lot of days off for appointments/ surgeries, so Im just wondering in general how long fevers last, and how long they take you out of it, so to speak. Or if theres no general guideline and its individual.

additiionally i was hoping to go on a week long vacation (within canada) at the start of october, and am wondering if this is a terrible idea or not, given that from what i've read, side effects usually start around the three week mark. 

i've also experienced a pretty constant but low level of nausea since i started the doses, and my pharmacist has suggested gravol, but that always puts me to sleep, so i was wondering if anyone has found an effective way to deal with this.

thanks in advance, hope everyone is doing well! 

Login or register to post replies.

Scooby123's picture
Replies 11
Last reply 9/10/2018 - 1:42am

Hi all can anyone give me advice or had same issue with keydruda and liver count up. Had bloods today consultant called and said liver count up so no treatment Monday . Check bloods next week if still up steroids. 

Anyone had to deal with same issue and what was plan for you be much appriciated.

 

scooby❤️

Login or register to post replies.

jagstter's picture
Replies 4
Last reply 9/11/2018 - 9:46am
Replies by: jagstter, bjeans, MarkR

Well, there's no getting out of it; I have to go to MAYO in AZ for a (partial?) nephrectomy, this month. The big question is - renal or mel? No one knows & I'll have to wait for pathology. The good news is, I know I'll have excellent care & compared to the local surgeon's assessment, they won't need to remove a rib to get to the 4 CM tumor, which infringes the vascular system @ the renal pelvis. MAYO hopes to spare a part of the kidney, especially w/ my melanoma but won't know until they're in there. Prayers appreciated, as I had not wanted to travel for major surgery but feel it is the right decision.

Separately, still recovering from WLE & reconstruction on my right ear from an invasive basal @ the helix, extending down almost the length & width of my thumb! Ugh ... I knew there was a reason for growing out my hair ;-)

Praying for Celeste & all of my mel Family ... stay strong & keep fighting!

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 3
Last reply 9/9/2018 - 9:28pm
Replies by: Anonymous

Hi everyone. Last year I went to the dermatologist for the first time because I noticed a mole that looked on. She biopsied it and it came back moderately atypical. After she went back in to completely remove it and surrounding margins, I got a full body check and everything was fine. 6 months later I went in and had another mole checked that I thought was suspicious. Mole biopsied, moderately atypical. I went back again a month later for another suspicious mole, moderately atypical. All removed with margins. I had her look at another mole that according to the nurse, was fine. I started seeing different dermatologist 2 weeks ago because my other dermatologist was not using a dermascope. She biopsied the same mole that my other dermatologist said was fine, and I received results today that the mole is severely atypical. The time between the two biopsies on the same mole is only about 2 months. Could the pathologist have made a mistake the first time? Going from "fine" to severely atypical is a pretty big jump. Or is it possible for a mole to become severely atypical that quickly?

 

My other question is, is it common for people to have many atypical moles (even severely atypical) and never have melanoma. I am absolutely terrified of getting it one day. I am only 25 years old. I feel this is young to have so many atypical moles already (4). However, I am fair-skinned, though not white as a ghost, and I have over 100 moles. I also tanned indoors for 2.5 years but never in the sun. Indoor tanning has been my greatest regret. I wish I educated myself on the matter. People tell me that it is great that I am being proactive but I also worry that my derm and I will not catch melanoma especially because I have a lot of odd looking moles that happen to be just normal moles so it is difficult to pick the "ugly duckling."

 

I'm sorry I put a lot on this post! It is my first time on this forum, or any skin care forum. I'm just very nervous and this is all fairly new to me. It seems that severely atypical moles are something to worry about.

Login or register to post replies.

DocPain's picture
Replies 2
Last reply 9/10/2018 - 3:54pm

If this is something that has been discussed recently, forgive me, I'm not on here often. Sixteen months ago I was diagnosed with Stage IV in my lungs. Scattered small spots and two large spots. I have had the 4 ipi treatments and 25 nivo treatments and most everything is gone. The one lingering spot just doesn't want to go away. It started at 35mm and is now only 5mm.

However, along the way I've had 2 week-long stays in the hospital. Both times for cognitive issues. The first time the official diagnosis was viral encephalitis, I don't know what the diagnosis the second time was. My doctor said, in his words, I was in zombie land. For 3-4 days both times I was a functional vegetable.

 I know these are potential side effects, and potential late effects as well. Has anyone else experienced this? Do the late effect occurrences diminish with time? Is there anything out there to minimize this?

Doc Pain

Login or register to post replies.

eric w's picture
Replies 46
Last reply 9/11/2018 - 10:00am

Hi all,

 

Celeste asked me to post this from her blog on her behalf in regards to how she was doing. She asked me to copy and paste this from her blog.

 

This is a short update for my friend SUPER WOMAN Celeste. On her behave I can say the past few days have been difficult,but she handles it all with strength and determination to get better. Picking up from her post. Appendix removed 8/30 and it was found to be cancerous. Most likely goblet cell carcinoma. This resulted in appendix and 1/3 of her colon being removed. The good news is they were able to get clear margins. The not so good news is she developed a ileus couple of days ago. After being miserable and having a distended stomach along with vomiting this am a NGT was placed. Although the tube is uncomfortable, it has brought great relief. She has had over 2 liters of stomach contents output today!!! Hopefully tomorrow her pathology report will be back. Please pray with me that she has a speedy recovery AND the path report tells us no further treatment is need. Stay strong Celeste, you got this!!

Login or register to post replies.

denimike's picture
Replies 3
Last reply 9/7/2018 - 9:44am

Hi All,

I'm new to this board. Actually, the original Melanoma Patient's board (back in 1997 era) helped me a lot 21 years ago. 

My wife had an arm lesion removed, with subsequent sentinel lymph node biopsy in 1997. It was a 1.5mm, in what today would be called Stage 2A. 

We thought all was behind us when we hit the 10yr milestone. Recently, a small (0.6cm) spot was discovered in the brain stem. This has not yet been confirmed as a metastasis. 

My questions involved guidance on taking the next steps in diagnosis, treatment and prognosis. 

- First, has anyone had/heard of such a late onset met 21 years later? 

- Spinal tap recommended by oncologist

Is this the proper next step to diagnose? 

Anything to be concerned about the test?

-  PET scan was also recommended

Does this sound reasonable in parallel with the spinal?

- Treatment (maybe getting ahead of myself)

What questions should I be prepared to ask the Dr based on results from tests above?

What treatments are available?

- Prognosis - it's been 21 yrs since I've looked closely into this disease. 

What can we expect as a prognosis for this type met?

 

Thanks for any info provided. I know this board has been a great help to many people. 

 

 

Login or register to post replies.

Jubes's picture
Replies 8
Last reply 9/8/2018 - 7:54pm

Hi friends

 

has anyone used humira for joints and inflammation?

My rheumatologist is suggesting it now after my CRP count got to 35. (Normal range 0-5)

thanks

 

anne-Louise 

Login or register to post replies.

NEDnotDead's picture
Replies 8
Last reply 9/5/2018 - 10:26pm

Anyone else have multiple blue spots appear on skin after Ipi/Nivo treatment?  I had at least 30 appear after 1st treatment and after the 4 combos, now have a white halo around the larger spots.

Login or register to post replies.

MarkR's picture
Replies 9
Last reply 9/6/2018 - 4:28am

Hi All

im not really a poster but am an avid reader as I find the posts and comments really help me get through this.  I wanted to post an update as my experience has been a little unusual and I hope it might help others in a similar situation.  My background thus far:

2005 - 1.2mm Melanoma just above elbow with WLE and Negative SLNB

2016 - Intransit Met in scar tissue and upgraded to SIIIB

2017 - New met in deep in arm with another surgery and into Checkmate 095 study for adjuvant Ipi/Nivo.

2018 - Start trial with doses every 2 weeks.  Completed doses of Ipi/Nivo then Nivo then Nivo then Ipi / Nivo before a further unresectable Met in scar tissue and new met on chest takes me off the trial.  Moved to metatastic dose and 2 more Ipi/Nivo infusions.  After 2nd dose I experienced headaches eventually leading to a 3 day hospital stay with enlarged pituitary gland and hepatitis of the Liver.  Moved on to steroids and immunosuppressants which took 4 months to get my Liver under control.

Yesterday I had my CT scan which showed no new mets and shrinkage of the Met in my arm!!!

Doctors have taken the view that I don’t need any further Ipi or Nivo as my body is now dealing with the Melanoma and I am onto watching and waiting and reserve the Nivo for any future progression if it comes to it.  The relief that the immunotherapy is working is immeasurable and I can only pass on my best wishes to everyone on this site and hope that you all see improvements with your meds and get good results.

 I am in the UK being looked after by Dr Larkin at the Royal Marsden.

Mark

 

Login or register to post replies.

CallMeKate's picture
Replies 4
Last reply 9/6/2018 - 11:25pm
Replies by: Anonymous, Threefitty, CallMeKate, gopher38

I don't post often, but I'd like to get some advice.  In May, I was diagnosed with 1B on my outer helix of my right ear.  This summer, the surgeon did a WLE and SLNB, taking about a 3 cm x 2 cm chunk out, plus 19 nodes.  Everything came back clear, which is great.

Now, I have the option to do some reconstruction of my ear.  I met with a surgeon on Friday, who gave me two options.  One is a 2 step process which would involve getting some donor cartilage from the bowl of my ear, placing it in the missing space, then later creating a "flap" to cover it with skin from the back of my ear.  The other option is a one step process which would create a small wedge in the curvature of the space and stitching together the ends.  

Does anyone have any experience with this?  I did have to break it to my son that it wouldn't "grow back", as he thinks, while my brother thinks I should get an elf ear.  However, I'm probably going to make a t-shirt for Halloween that reads "Tyson got me too!"

Thoughts?

Login or register to post replies.

Tracyyy's picture
Replies 3
Last reply 9/27/2018 - 8:06am
Replies by: Tracyyy, jrtufo

Hi friends,

I haven't posted in a while but decided to give you an update about my mother's situation. As most of you know she is Stage 3C unresectable with pelvic lymph nodes involved and in March 2018 she started a double blinded trial Dab/Tram + PDR001 (immunotherapy) or Dab/Tram + Placebo. First scans in June showed that the nodes have significantly decreased in size, but then in July the side effects started - high fevers, sweating, chills, nausea, rash, etc. She was off the drugs couple of times, in August the oncologist reduced the dose of Dab/Tram and now she is doing well. The scans in August showed that the nodes are stable - they haven't decreased, but they haven't got bigger too. The scan also showed that my mother has lung inflammation - pneumonitits. The oncologist told us that this not a side effect of the targeted therapy and that is why they think that the infusions she gets together with the targeted therapy is immunotherapy, because pneumonitis is a well-known side effect of it. They prescribed her some steroids and antibiotics and the inflammation is almost gone. Did any of you get pneumonitis while on immunotherapy? I know that stable is good response, but I want so much for her to be already NED! Best wishes! Xxx
 

Login or register to post replies.

Savymoo23's picture
Replies 5
Last reply 9/6/2018 - 12:57am

I don't know if I could really say that I'm getting back for normal. But I saw my doc about getting on anxiety/depression meds. I've been on them since Friday and it'll take some time to really tell if they are helping me but I feel just a little weight lifted off my shoulders knowing that I finally talked to someone about this stuff and that I'll be seeing a therapist. I hate talking about my mental health but it's time to stop ignoring it. Love you guys, you've been such a rock for me! 

Savannah Price

Login or register to post replies.

Pages