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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arthurjedi007's picture
Replies 19
Last reply 8/26/2014 - 2:04pm

I got my first scan with this Merck PD1. It was a few hours before my 5th dose so week 12. I would like my fellow warriors who have had every medicine fail so we finally get into the EAP to have faith. It does work.

I think my mayo doc was actually a little disappointed I didn't have a complete response but I think it is fantastic to have a mixed response. About a dozen or so tumors are shrinking including the t10 that almost paralyzed me last winter. About 6 or so stayed the same. 5 grew. However this was compared with a scan almost 1 month before I started PD1. Of the 5 that grew the huge 9 x 10 cm in my left shoulder they think is mostly dead tissue now because the huge center was dark surrounded by the red/orange mel. Also it visibly measures 9 x 9 now. The one on my skull that the visible part shrank a lot is internally at my brain so my mayo doc wants my local doc to radiate it so trying to get that started. I maybe should have had it done at mayo but didn't even think of it until we were on our way home. But my local radiation doc is really good. There are also the t12 and l2 in my spine that grew a lot so also waiting to hear if they want them radiated too. The one on my collar grew some since that old scan but the visible seems to have stayed the same. If you notice I refer to most of my mel by bone is because pretty much everything has started in a bone then grew to soft tissue involvment. So yes this stuff definitely works on bone mel tumors too.

So that's it. Finally some pretty darned good medicine if you ask me.

I dunno but I assume it is possible the PD1 might start working on the non responsive tumors? I know it can continue working on the responding tumors. I just don't know about the non responsive ones that grew or stayed the same.

Anyway be strong. Keep fighting. Like I've said many times that someone said to me on here no matter how many medicines fail you have to stay strong and find the one that works for you.

Artie

 

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jogo's picture
Replies 4
Last reply 8/19/2014 - 2:58pm
Replies by: Kim K, BrianP, jogo, katie1

After 2 3mg/K ipi infusions, a toxic immune related Adverse Event, 2 infusions of Remicade, massive doses of Prednisone, orthostatic hypotension due to adrenal gland insufficiency, massive headaches for several months, convergence (vision) problems (the oculomotor nerve crosses behind the pituitary gland), I'm told I don't have hypophysitis.  My adrenal gland responds to ACTH when it's administered.  When the endocrinologist takes me off the 5 mg Prednisone and 0.1mg fludrocortisone, I'm exhausted by early afternoon after taking things easy.  I'm back on the Prednisone and fludrocortisone. The ophthalmologist has given me eye exercises to see if I can improve my vision without the use of prism lenses.  My internist doubled my synthroid. And I'm still told I don't have hypophysitis.  My husband says it's all in my head.  He's trying to be funny.

.

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angtom's picture
Replies 10
Last reply 11/15/2014 - 2:56am
Replies by: RJoeyB, Anonymous, sis1971, MelanomaAnkara, angtom, Patina, ecc26, WITom

I have a question my husband had his first ipi treatment 2 weeks ago he is stage 4 melanoma braf neg mets in lung and trunk. He had his tumor harvested yesterday for the TIL trial  at moffitt. We were surprised at how much the tumors had shrunk as was the doctors, the original spot to harvest the tumor which was the largest was almost to small now to get a good sample they wanted 2 cm but said 1 cm would do so they also took another sample from his abdominal wall which had shrunk also has anyone else had this kind of reaction to ipi after first dose?

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Ginger8888's picture
Replies 12
Last reply 8/23/2014 - 2:58pm

I did the 30 day Hd interferon back in april with just a little fatigue as side effects and failed it..I just finished my last of 4 infusions of Yervoy Wed and have no side effects with it either..I've been reading about the Yervoy and most people are having crazy side effects and it's working for them..I am very worried that i'm not going to respond to it because of the lack of side effects..Has anyone responded to Yervoy with no side effects?..I won't have scans for 4 weeks...I'm stage 3 C

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Anonymous's picture
Anonymous
Replies 3
Last reply 8/18/2014 - 4:08pm
Replies by: lou2, Anonymous

FDA approved this year.  Supposed to detect melanoma without biopsy.  Anyone had this used on them?  Only can be done by derms, not patients by themselves.

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Nicole35's picture
Replies 3
Last reply 8/18/2014 - 12:35am
Replies by: Nicole35, Janner

I am new here so Id like to say hello! I was diagnosed with Melanoma In Situ on 8/6/14, had my WLE on 8/13.. Now I am waiting for those results. In the mean time I have been reading my original path report and noticed some things of concern. First off, my mole, which was flat, small mis shaped, was taken with a shave biopsy and that came back in situ, can In situ truly be diangnoses with just a shave? Or is it more of AT LEAST In Situ? Also path report says things like with in Epidermis there are nested and single melanocytes growing in a lentiginous and confluent growth pattern, the lesion closely approaches a lateral margin and there is pagetoid scatter of melanocytes to higher levels of the dermis.  I hate this waiting game, and am concerned that with a shave biopsy in situ is just the only depth it could be staged at.  im aware of how dangerous Melanoma can be, my aunt had a WLE with no further treatment and 10 years later out of no where had stage 4 melanoma in her lungs. I want to see a melanoma specialist to be on the safe side, but any and all info anyone here could give is very much appreciated. Melanoma is a beast and we are all fighters. Thank you so much! And God bless!

ps. I also have several dysplastic nevi

 

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jualonso's picture
Replies 2
Last reply 8/19/2014 - 1:24pm
Replies by: jualonso, gaby

Hi, i just want to inform for people who has problems for dealing with english language that there is a new web with a forum for people who speak spanish language.

 

just for trying to help as many people as possible

 

Http://venciendoalmelanoma.com

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Anonymous's picture
Replies 8
Last reply 8/21/2014 - 1:35pm
Replies by: Anonymous, deardad, casagrayson, dodgedh2, Janner

As taboo as subject as this is, I need and want to know what it will like and what I can expect to see as my loved one gets closer to death from melanoma.  Does anyone have insight that they can share about this?

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Brigitte's picture
Replies 6
Last reply 8/18/2014 - 8:30pm

Hi. Last week I had a conservative excision to remove the rest of a atypical  mole.  I got the patholgy report back and I was wondering if the margins are all clear? 

 

Diagnosis: Surgical Changes

Gross Discriptin: Received in formation, labeled "right mid upper back", is a 2.8 x1.2 cm elliptical excision specimen of gray-tan skin and subcutaneous tissue. The specimen is inked, serially sectioned and submitted entirely in four cassettes.

microscope decription: sections show surgical changes without residual nevomelanocytic proliferation. 

 

I go back in a week to get the stiches. out. Whats next? 

 

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Had my most recent PET scan on July 17th.  The results were phenomenal.  I had 11 mets "resolved" from the B-raf/MEK.  Granted, that was out of 15 mets and 4 of the ones not resolved were in my brain.  I had whole brain radiation back in March/April so I was sure that I was going to have positive results.  As you can tell from the subject here, the bad news is coming.  We did a Brain MRI last week and as of right now, I have 9 mets in my brain.  Three of the four that were in there grew and the new 5 are all 6 to 8 mm.  The other ones were 2 mm and three are now 6 mm, one stayed the same.

As you can see, this was not the result I expected.  The Oncologist and I both were convinced that the Ipi I did last year was helping the B-raf/MEK.  Who knows, maybe it still is.

Any idea what to expect now?  I only had a heads up phone call from the P.A. and haven't seen the doc yet.

 

The smile on my face isn't a disguise, it's confidence that I'll be here for many years to come.

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tcell's picture
Replies 7
Last reply 8/20/2014 - 2:39pm

Dear Friends,
Last Wednesday I had my first dose of IPI. At the same day I also received a dose of Zometa for the tumors in my bones.

The good news is that I did not encounter any of the severe side effects. Nothing much besides A little diarrhea.

Due to my high tomor burden I am not in very good shape at the moment but still trying to go for a short walk every day.

Ginger, thanks for the advice with V-8 juice. Thanks to all the others for their advice!

lab results from last week were not looking too good with an LDH close to 2000. had some blood drawn today hoping that the situation is already improving. I know, however, that waiting for IPI to kick in can take quite some patience.

so please keep your fingers crossed for me!

all the best,
Chris

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miky85's picture
Replies 1
Last reply 8/18/2014 - 5:11pm
Replies by: tcell

Hi, I just started to read this forum recently. 

My father has started his terrible journey in Sept 2011 when they found out a melanoma in his thigh. That was already stage 3, not sure about the specification. After different treatments and surgery to remove linphs he has got satellite melanoma all over the leg. Obviously, the leg became bigger and bigger during the period. 

From January 2013 to November 2013 he has been part of the sperimentation of a new drug, the project was callend PRAME. We did not see any relevant benefit and that's the reason he left for starting Yervoy, in January 2014.

In the process of going from local melanoma to satellites they moved him from stage 3 to 4, and that was right during the PRAME therapy. In our country Yervoy is given just to stage 4 patients.

He has been able to have the first three sessions and then, in April 2014, just went down. He collapsed being in and out from hospital with infections, inflammations, pain. Doctors told us was a reaction and probably an intoxication from Yervoy. Recently, just a month ago he was again in hospital with very high fever, nausea, diaorrhea, confusion.

Doctors told us that he is in a terminally ill stage where they are not able to do any prediction. His blood has a very high LDH value and the forecast is to have blood cancer and perhaps mets on linphs and brain. He is literally under palliatives and he is not eating, so skinny and pallid. Most of the day just sleeps and his voice his so low and innocent, like his behaviour, since he is not clearly aware of the situation. He cannot have TC or radio because he is too weak, at least they say.

I am feeling so bad, do not know what to do and what to think. I am very confused because everything went so fast and now I am stuck with this situation. What do you think? Do you have any experience at all with this particular aspect of illness?

Thank you all...

  

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ray39's picture
Replies 2
Last reply 8/18/2014 - 10:59pm
Replies by: ray39, Janner

I had a new mole removed today from my stomach area that my derm said was suspicious. It was slightly under 5mm. He told me before he did it that if there was pigmentation under the skin it's usually a bad sign.  Well, he did a deep shave biopsy and said it was all clear and that he always likes to be overly cautious. Has anyone else heard of this pigmentation description?

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Amanda's picture
Replies 2
Last reply 8/19/2014 - 10:31am
Replies by: Owl, ltalley

Sorry i havn't posted in a long while.  Randy is still on the Mk-3475 trial at 10mg and it still doing well.  He had an issue with an adrenal insufficiency from the treatment which he now has to take replacement hydrocortisone every day, as well as had a pnuemonia and was hospitalized for both these conditions until they were discovered and controlled.  

For those of you who don't know about my boyfriend randys case, he was diagnosed march 9th 2012 stage 4 right off the bat.  No primary.  Brain, liver, lungs.  He had a craniotomy followed by WBR, and Yervoy.  The radition did great on the brain mets, and the yervoy kept the tumors stable for about three months, when they started growing again.  He had a small bowel obstruction which eventually required surgery.  During the time before surgery he lost a lot of weight, was really weak, had lost about 30lbs. After this surgery, and discharge we got a new oncologist who was more informed about melanoma.  He pressed to star chemotherapy.  I knew from research that chemo was rarely successful in melanoma, and had been reading about a new trial for Anti-pd1, now known as Pembrolizumab(former Lambrolizumab, or anti-pd1).  I insisted we try our best to get into this trial, and not do chemo.  Luckily his oncologist knew the trial oncologist and got us an appointment.  

Long story short, randy has been on the trial since february 1st 2013, and doing well.  Some tumors gone, and one, the original size of a large breast, now the size a little bigger than a golf ball, and stable.  One under the jaw line gone.  

Living day by day.  Just wanted to give an update.

-Amanda-

 

"Give thanks in all circumstances"

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curious12's picture
Replies 5
Last reply 8/21/2014 - 6:18am
Replies by: Anonymous, curious12, Janner

My son (age 9) had a spot removed from his heel. It was removed via punch and apparently was mildly atypical, but with margin(s) involved. The derm thinks completely unnecessary to re-excise. I am bummed there are margins (although thankful it is nothing)  Would it be overkill to take him elsewhere to re-excise? I have read that acral nevi on kids appear atypical under the scope anyways. It was 1mm,dark and on his sole? It's also painful to have a shot there, but will do it if need be! I'm not comfortable asking the derm to do it-- he really didn't even want to remove it in the first place. Another derm thought it was slightly atypical but she couldn't do a punch so I went to him. guess that backfired!!

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