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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Dave61184's picture
Replies 7
Last reply 9/26/2018 - 6:31pm

Hello everyone prayers for all.  As I stated in previous post I was diagnosed with stage 1a and had it removed this past July. The individual that did my wle was a dermatologist that was specialist in Mohs Surgery he seem very confident and said after this wle I’m good. At that time I was worried and rushed into the wle and didn’t even do any research. I’m now  doing research and others people told me that I should have gotten a melanoma specialist/melanoma oncologist first and reviewed it with them and had them remove it. Now I feel that I made a bad decision. I’m now seaking an oncologist/melanoma specialist to review everything. Now I’m just worried that I did this in July it is to late and it won’t benefit me cause I don’t know what they can do.  I want to be proactive and don’t want it to spread. Has anyone just had a dermatologist do the  Wle? Thanks again everyone.

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MelanomaMike's picture
Replies 13
Last reply 9/29/2018 - 11:50pm

Hi family, alotta you know Whats up with me currently (3 diff Immunol meds arnt working for me), my question is, is it safe to say that trying Chemo meds like Interferon, Interleukin, Proleukin and other types not a even worth trying? Is that like going backwards? Im gathering that those meds have very little success with our desease compared to the Pembro, Ipilimumab & Nivolumab that iv done already...just curious! Please share..thanx!

Im Melanoma and my host is Mike..

www.covvha.net

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Anonymous's picture
Anonymous
Replies 6
Last reply 9/27/2018 - 12:38pm

I have not posted any updates in a while so here it is... I am official 10 treatments in (treatments every two weeks) So far the treatment side effects have been pretty mild. I have lost the thyroid which was no surprise since my doctor had warned me that is was a possibility. The fatigue has been overwhelming at times but I have been working full time and still full time momming to a 6 & 9 year old. So for those that have asked if it is possible to keep working and keep doing the thing you love to do the answer is a big YES!! Some days you may need that extra nap or bed at 7pm but you can do it!! I have now had my second set of scans since starting Nivo and last scans showed NO cancer!! I have really had to take a deep breath and process that....I guess because I know how tricky this cancer can be. But today I am going to enjoy every moment....the best lesson I have learned in this journey!! I still have 8 months of treatment ahead of me but so thankful for treatment options. I lost my grandfather to melanoma 24 years ago and I know how lucky we are now to have all these treatment options. 

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Olytown's picture
Replies 8
Last reply 9/27/2018 - 11:27am

I'm a stage III melanoma survivor and following surgery 2 years ago, I have had good body and CT scans. I used to be very active outdoors : running, hiking, kayaking, swimming, body surfing, etc.  I've become afraid to even go from the house to the car to go to the store. I do follow the advice of my oncologist to choose outdoor activities during times that my shadow is longer than me. I cover up with UPF clothing more than relying on sunscreen and I even wear UPF gloves.  I have become somewhat outdoor-phobic though, and it is limiting my previously active lifestyle. Sometimes I get depressed about it. When does it feel safe to be outside again? I have turned down some fun invitations due to fear. 

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aldrichdesigner's picture
Replies 19
Last reply 10/8/2018 - 5:51pm

Think we could all use this boost from time to time to understand just what's possible these days. All survivors please respond but I'm selfishly interested in the stage 4 numbers ...

I'm going on 1.5 years since being diagnosed stage 4 and another 9 before that when they found the primary. So I'm already at 10.5 years since my very first positive biopsy. Currently stable and on keytruda and really hoping to get another 10.

- - - Never Giving Up No Matter How Hard This Gets - - -

Stage I Survivor Since Aug 2009, Stage IV Warrior Since Apr 2017, #AldrichStrong Since Apr 1983

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Momofjake's picture
Replies 14
Last reply 9/24/2018 - 10:35pm

Okay!! 

Hi there:) I just want to post some happy stuff even though we are in the hard place. This board just makes all the difference. I am the quiet reader most of the time and Jake is pretty private so I try to respect that. 

But the odds of Jake from Utah and Brian P from North Carolina being in California and meeting for a visit are just too slim to be a coincidence. Jakes first talk with anyone really. Brian was great and Jake got motivated!! He is ready to start a trial with Dr Hamid in LA and seeing if he is eligible for Brian’s trial in Houston! Brian helped get the doctor on board. 

The wreched beast has made its way to Jakes heart, brain, bladder, bowels, bones, muscles....but Jake is okay:) He feels pretty good despite the SRS, terrible biopsy through his entire torso yesterday and the constant travel. We got this. 

Many thoughts and prayers...that means you Celeste! The board changes lives. It’s changed ours. We got this!!

With gratitude for you all here, truly, 

Kerri

 

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MelanomaMike's picture
Replies 3
Last reply 9/25/2018 - 12:12pm
Replies by: MelanomaMike, Roberto

Hi guys, in my original post this morning titled My CT Scan Report is In (i think that's what it reads), iv replied to each of you & thank you again, by doing so, the day flew by & im done sulking & "oh god im gunna die sooner then expected!" Lol...you all Rock!
Mike..

Im Melanoma and my host is Mike..

www.covvha.net

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RichInLife2's picture
Replies 2
Last reply 9/27/2018 - 11:36am
Replies by: RichInLife2, bjeans

Hey, anyone know how to contact MRF support for an problem I'm having with my account? I've searched around on the website but I can't find it anywhere. Thanks.

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mike_nj's picture
Replies 9
Last reply 9/24/2018 - 12:00pm

Greetings

Just wanted to stop in and say hello.  Name is Mike from near Princeton NJ and turned stage 3B back in 2004 after a stage 1A diagnosis back in 1999.  Working as a chemical engineer and hope to retire next year.

Went to high school with George R R Martin who wrote Game of Thrones.  We were in the chess club back then but he was no match for me!

So far all is still well with me since then after axilla dissection, radiation, and clinical trial back at UPMC with peptide vaccine called Mel43.

Back when I progressed to stage 3B, the mpip chat room was a literal life saver.  Every evening, after work, I got to know many of my colleagues with this disease and we supported each other every night as we chatted about everything, melanoma related or otherwise.  Not sure where the chat went, but it was really dynamic back then.

Some of us did OK and others were not so fortunate and I was thinking about a few members earlier today.  I recall a brave woman form the UK named Imo, who joined us in chat frequently,  and I remember her last post "Off I go", as she was traveling somewhere to get treatment and that was her last post.  There were many others though that beat the odds. 

Wishing all the new patients and those battling this for a while the best and hope you all well.

Mike K

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Raeofsonshine's picture
Replies 10
Last reply 9/24/2018 - 11:34am

Hi there!
Any thoughts from anyone with the same sort of history would be so greatly appreciated.  Had 2 rounds of Ipi/ Nivo late last year.  Due to a plethora of problems - as we have all faced on treatment- we stopped infusions.  Last treatment was 12/2017.  Scans in May showed great response- in transit mets in leg - 7 or more- had shrunk or disappeared completely.  Fast forward to scans in August and I have 2 new growths in the leg, confirmed with a core biopsy- active mel.  For real?  BRAF neg so looks like the only option I get right now is TVEC.  This is only because my doc does not want to pull enough tumor together for the TIL trail and still leave plenty in my leg for monitoring.  I asked if I could just "wait and see if it continues to grow" and he does not want me to wait.  Thoughts from those that have had the TVEC injection?  Should I be getting a 2nd opinion?  My doc is at University of Colorado Melanoma Clinic so I know I'm not dealing with someone that isn't abreast of current options and information. 
Thank you all and I hope you all have a great weekend and stay strong!
Ann

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MelanomaMike's picture
Replies 44
Last reply 9/23/2018 - 7:55pm

Well, deep breath, as i was typing to you all right now this morning, like i do every morning, my Oncologist calls in to tell me my scan revealed Not So Good News, right lower lobe (Lung) tumor has increased now to 5.2cm and basically all the otherones have not vashished but not grown either, the one on the right (the 5.2 one) is the strong BASTARD of the group..DAMNIT! she said my treatment will be postponed today & shes sending me back out to Kaiser Riverside to see their specialist to talk again..comon' now! Somethings gotta give here, time is moving fast!...gunna go sulk for a few minutes, ill be back later, ill head over to pick up my CT Report later, i guess they cant Email it only Fax & i dont have a machine...love ya guys..Mike

Im Melanoma and my host is Mike..

www.covvha.net

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I've had eleven skin cancer primary sites: four melanoma, four squamous and three basal, all different body parts ... but the melanoma on my forearm, which looked like a cafe au lait birthmark, has returned. The staining began reappearing two years ago, in the same place and odd shape as the original, despite its having been completely removed by repeated Mohs surgeries five years ago...I go every four months for a skin checkup with the dermatologist, and when he finds something he biopsies it, and if positive ssend me on to the sin surgeon.  The surgeon told me today that he has never, in twenty years of practice, seen a cancer that had been successfully removed by repeated Mohs, reoccur in the same place and style. I am totally worn down by the repetition of skin cancers at new sites, and now to know that they can come back after Mohs has really lowered my confidence and strength. Your thoughts?

Terry

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Anonymous's picture
Replies 3
Last reply 9/22/2018 - 1:56pm

Hi all - my mother was diagnosed in August with having stage 4 melanoma. It has spread to her brain, liver, spinal cord and lung - took us completely by surprise.

As there were multiple tumours in the brain (>10) and due to their positions on the brain, the doctors decided WBRT would be the first step forward. 

We were told the next step most likely would be immunotherapy but we should wait for the biopsy results. When the biopsy results came back it was found that she has the BRAF mutation (not sure which one) and the doctors wanted to start us on the BRAF/MEK targeted therapy instead.

I was unsure about us switching to the targeted therapy when we had immunotherapy lined up but the doctor explained that it was a better option at this point in time since :

a) my mother is still on very high doses of cortisone which affects immunotherapy negatively

b) targeted therapy acts faster compared to immunotherapy in the cases they have seen and my mother's case calls for immediate results

c) the WBRT has most likely damaged the blood-brain barrier and the BRAF drugs would make their way there with greater success

We were going to start the treatment last Monday but the weekend leading to that my mother had a brain haemorrhage. Noone would agree to operate on her due to the risk, her being on blood thinner drugs and the extent of the damage. Miraculously, she seems to be slowly recovering, talking again, still in bed of course, with control of her limbs and she has started eating normally again. The doctors believe she is now stable and the haemorrage has most likely stopped as she is getting better each day. No CT scan to confirm this yet.

The doctors have said we should start the targeted therapy as soon as possible : Dabrafenib but only that one alone as a) the Trametinib drug has not yet arrived and b) Trametinib causes higher instances of haemorraghic events. 

I understand that this is an incredibly difficult situation but I have been reading great things about these treatments. I haven't read anything about stage iv people with multiple sites of metastasis though.

My questions to you are - in your experience :

a) Does dafrabenib/ trametinib work well for people with many sites?

b) Have you or anyone you know started on dafrabenib and then added on trametinib a while later?

c) Is it worth me buying Trametinib privately than waiting for it to arrive? Worried that doctors are not giving trametinib because it hasn't arrived, not because it causes bleeding events.

d) When do we start seeing results of the targeted therapy - how do you guys check that it is working?

e) Should I ask the doctor that we switch to immunotherapy and cut down on cortisone to do this?

f) Really scared about what WBRT is going to do long term - when do you usually start seeing effects?

g) Should I push the doctors to find the primary location of the melanoma? It is non-melanotic (i.e. has no dye) so it's not easy to find but i can get a dermatologist to do what they need to do if it is necessary.

I keep telling myself my mother can get to an NED state if I everything works as expected and I'm not giving up hope.

Thanks for taking the time to read this - I have read plenty of the posts here. You are all going through a massive I wish for courage to you and your carers as well. Have a nice weekend everyone!

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Savymoo23's picture
Replies 10
Last reply 9/22/2018 - 1:10pm

Here is my lab results:

 

Study Result
Impression
1. No discrete evidence of metastatic disease.
2. Cystic abnormality associated with the left ovary. Consider further evaluation with pelvic ultrasound.

Narrative
HISTORY: Malignant melanoma of torso excluding breast (HCC).

COMPARISON: None.

TECHNIQUE: 100 mL Isovue 300 was administered IV. Postcontrast CT images were obtained of the chest, abdomen, and pelvis. Automated exposure control was used. DICOM format image data have been securely sent to the Idaho Health Data Exchange (IHDE) and
are available to nonaffiliated external healthcare facilities or entities on a secure, media free, reciprocally searchable basis with patient authorization for at least 12-months following the study. For more information visit http://www.idahohde.org

FINDINGS:
Thoracic Inlet: Normal.

Chest Wall: Postoperative changes of the right axilla. Postoperative changes noted in the right back.

Heart/Pericardium: Normal.

Great Vessels: Normal.

Mediastinum/Hila: Normal.

Lungs/Pleura: Clear. Airways are normal. No pleural effusion.

Liver: Normal.

Biliary: Normal.

Pancreas: Normal.

Spleen: Normal.

Adrenals: Normal.

Kidneys/Ureters: Normal.

Bowel/Mesentery: No obstruction is present. No wall thickening or pericolonic inflammatory stranding. No mesenteric mass. There is no free intraperitoneal air. Normal appendix.

Vasculature: Normal.

Lymphatics: Normal.

Pelvic Organs: Left ovarian cyst measuring 3.7 cm in diameter.

Bladder: Normal.

Musculoskeletal: Age associated degenerative changes. Postoperative changes of the right back.

Savannah Price

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MelanomaMike's picture
Replies 8
Last reply 9/22/2018 - 1:30pm

Hi guys, hope yer all doing well & in good spirits, yep, Opdivo #6 is fixin' to go down tomorrow assuming my oncologist "Doesn't" deem it unnecessary, im due to get results from CT scan last Monday so, im not scheduled to see her actually, just straight shot into the Juice Bar (infusion room) shes on the same floor so, im sure we'll see eachother!
Boy, we sure have alotta new folks poppin up here at MRF, since im off work for the time being (SSDI) Ive taken on the role as Gate Keeper/Butler etc. greeting these folks especially if no one has replied back to them, for not everyone is off work or retired etc...
Anywho, ill keep ya all posted after tommorrow..love ya guys..Mike!

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