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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pookerpb's picture
Replies 8
Last reply 7/9/2015 - 7:25pm
Replies by: Anonymous, pookerpb, jamieth29

I am new to this forum and am the wife of a stage IV melanoma cancer patient. Husband was first in 2008 when husband was 37. He had a nodule (>4mm) removed from calf. lymph nodes tested negative. Was on interpheron for one year.

in 2014 it came back in small intestine. Had resectioni done and on IPI/Interpheron trial for 8 mos until some of the lymph node markers progressed.

Jan 2015 started the Keytruda/Peg Interpheron trial. Showed shrinkage with first 12 week scan, and then last week scans showed some stability with very minimal growth in others.

Had to come off treatment due to Pneumonitis. On very hight dose prednisone for a few weeks and hopefully back into study in 6 weeks (will have missed 2 doses).

We live in Northwestern PA and see Dr. Kirkwood in Pittsburgh who is a melanoma specialist. we have 2 daughters age 13 and 15.

The unfortunate thing is that my husband has a concerete business which is very labor intensive. I dont know how he goes to work each day and I hate seeing him suffering from his job (very physical).

Just wanted to say hello....

 

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tangerine1953's picture
Replies 2
Last reply 7/8/2015 - 7:48am
Replies by: jamieth29, Anonymous

Hi all.

The reason i post is because of a mole i have on my arm. A couple of weeks ago i noticed a mole on my arm had raised slightly, the thing that scared me the most is that i have just had a holiday in the sun. The mole hasnt grown in size apart from raising slightly, it isnt itchty, painful or bleeding either. The mole is about 2 mm in diameter, i have been to the doctors and he quickly dismissed it as being nothing. I noticed like a black spot inside the mole, this has now risen to the surface and formed a scab on top of the mole and the colour of the mole seems to have changed to like a flesh colour. Do i need to go back to the doctors or could it just be irritated or something??

 

Thanks in advance for any advice

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Bubbles's picture
Replies 10
Last reply 7/9/2015 - 6:41pm

How do you be, my friend?!!!  Wishing you well.  Hope you are at least a bit better.  c

chaoticallypreciselifeloveandmelanoma.blogspot.com

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Anonymous's picture
Anonymous
Replies 3
Last reply 7/7/2015 - 11:26pm
Replies by: Anonymous, Janner, Colleen66

I have searched high and low for answers to my questions, but kind of get run around answers. Everyone here seems very educated on the topic, so I thought I would give it a shot here. 

I have never watched my moles....didn't ever think about melanoma. Then the doctor removed two that looked odd. The first pathologist could not come up with a clear determination on classification, so it was sent to a second pathologist. This pathologist sent report saying one was severely atypical and the other was moderately to severely atypical. Neither had clear margins so I am having both excised to get clear margins. When I went to dermatologist for first time, she saw another suspicious one, and it came back moderate but had clear margins. 

My question is...I didn't realize these were odd, so never watched for change. I have several others which are odd looking now that I have done a body check. Since I have no idea which have changed, and which have always looked weird, and all three have come back atypical, should I be concerned that there could be one that is melanoma? I'm not sure what to do now. I don't want to wait around and have the bad one missed, and I cent find answers on what I should do. 

 

Thanks!!

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dfeng's picture
Replies 4
Last reply 7/10/2015 - 10:03pm
Replies by: tschmith, Bubbles, jamieth29, Mat

In march I was in severe pain in abdomen, during the surgery a 2cm tumor was found and removed. It turns out to be metastatic melanoma, stage IV. After three months, last week a CAT scan shows 6 more around liver size from 2cm to 3cm. It seems that I am really in bad situation.

 

I am going to do brain scan and chest scan again this Thursday. Since three month ago everything shows clear but now, anything could happen.

 

Talked to my doctor in MSKCC, I am going to start a clinic trial from next Thursday. I will never give up and definitely fight to the end of world.

I will try to keep this post updated.

D. Feng

My record of progress on the first ipi/nivo trial is here:

http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/treatment-plan-made

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Anonymous's picture
Anonymous
Replies 15
Last reply 7/9/2015 - 1:17pm
Replies by: Anonymous

Does anyone know whether a 2 x 3 cm superficial spreading melanoma would show up on a PET CT or plain CT? 

I always think of these questions right after appointments, with another 3 months before I go back in.

My last PET CT was clear, but I got to wondering:  If superficial spreading melanoma spread internally, how big would it have to be to show up on PET?  Unless it took a more nodular form, it seems like it could grow for awhile before being detectable. 

Would it even show up at all on a regular CT scan? 

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uccio2014's picture
Replies 23
Last reply 7/10/2015 - 5:21am

TY

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Rita and Charles's picture
Replies 9
Last reply 7/12/2015 - 6:37pm

So we haven't even allowed ourselves to worry about what the drugs cost - in the end , who cares we are going to find a way to get therapy. But just cuious what the costs are of Nivo or Ipi?? Charles has a Medicare Supplement Plan through Healthnet - PPO...... of course he is in the damned "donut hole"!

Anyone have any insight to what health insurance coverage averages?? Vemurafenib + MEK, Keytruda, Ipi?

Rita

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Anonymous's picture
Anonymous
Replies 3
Last reply 7/7/2015 - 1:17pm
Replies by: Anonymous, jamieth29

Just a little background, 3b, positive ulceration, mitosis 18, two years as NED. I am still seen every three months but no scans and I have never had a PET scan that everyone on here seems to have routinely. Do they just stop doing scans after a certain point, am I missing something?

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jvictoria's picture
Replies 2
Last reply 7/17/2015 - 1:23pm

Background...

> Got Diagnosed this June after a missed diagnosis last July 2014; colorless melanoma on the right thumb nail bed.

> Went to Moffitt (Tampa, FL) for second opinion and decided to have initial treatment done there

> Had distal right thumb amputated and sentinal node performed

Results are back... Amputation went as well as can be expected. Tumor 5mm depth and Clark level of 5.0mm. Sentinel node came back 2 of 10 nodes positive for cancer. Current recommendation is a follow up complete lymph node dissection in right arm and then potentially go on a clinical trial.

I have been getting some conflicts on the benefits of the dissection... some people are saying that the full node removal sholdn't be done and I should go directly on a trial... then I hear you cannot go on a trial unless you have all your nodes removed.

All your thought and knowledge are greatly appreciated...

Also, curently thinking of getting a second opinoin at MD Anderson or Sloan.

Juan

 

Juan

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Nell's picture
Replies 2
Last reply 7/7/2015 - 1:05am

Just kind of bummed out...have only been on tafinlar/ mekinist combo 13 days and already the last 2 days I have been flat on my back with over 102 fever. I have had this sick tired all week...the lie down kind of tired...Hoping the dosage can be adjusted and I don't have to stop altogether....anybody have their dosage adjusted? Thanks for the chance to vent a bit....this disease sure gets scary at times.....

One voice can make a song; one life can change the world.

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Anonymous's picture
Anonymous
Replies 11
Last reply 7/6/2015 - 9:18am
Replies by: yazziemac, Ed Williams, jamieth29, Bubbles, Anonymous

Just curious if any one has had radiation following a radical lymphadenectomy of neck nodes? I noticed that it is not even a treatment option on this website.  I was recently diagnosed with melanoma and have had surgery one month ago to remove approximately 30 nodes in my neck area (primary melanoma on my nose).  They said 13 nodes were positive out of 30 for melanoma.  They said it is too soon to start any systemic therapy and want me to wait until I heal further from the sugery before I start radiation.  Radiation likely to start 6-7 weeks following surgery.  I am BRAF neg.  Otherwise healthy, although this surgery has kicked my butt.

Thank you for any help you can offer.  Something just doesn't feel right.

Mike

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Hi, 

Finished the Ipilimumab treatment successfully 3 years ago. Now - high PTH and enlarged parathyroid. Anyone experienced this side effect and if so - what is the treatment?

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Anonymous's picture
Anonymous
Replies 6
Last reply 7/8/2015 - 4:47pm
Replies by: hopeagain, Kim K, Anonymous, casagrayson, Wader

Hi, 

We know Dr., Steven O'day moved from the Angeles Clinic to Beverly Hills Clinic, but we are patients from the past and wish to consult with Dr. O'Day about a side effect that now appeared (a few years after end of Ipilimumab treatment). Does anyone know his email or where he is?

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RayfroMTN's picture
Replies 3
Last reply 7/6/2015 - 5:51pm

Hello all, first post on this wonderful site I found yesterday. I was diagnosed stage IV metastatic melanoma in April of 2014. During this past 14 months of course my family and my life has been turned upside down. Had a brain met surgically removed and then had 3 sessions of the newest radiation treatment on the bed of the tumor. Results come back Melanoma metastatic stage IV. We had a PET scan run and found nodule on my left lung, after Dr.s discussing situation the ping pong ball size Nodule was surgically removed along with the entire upper left lobe of my lung August , It to was melanoma, by now we have blood work and biopsy lab work return and I'm BRAF + my med oncologist decided we hold up on chemo for a little while as I was totally exhausted from the surgery. Then in December something happened to left lung it began to fill with blood and I gained 13 pounds in a couple days, we chose to go back in and repair or search out the problem, pumped the blood from the lung, mostly teaming with melanoma cells, I had blood transfusion to recover all the lost blood. Now by February, my Medical Oncologist decided it was time to try and slow this freight train down, so we started Chemo Zelboraf  pill form, took it for ab 10 days and side effects went wild, so we had to stop for 2 weeks, then restarted at lower dosage and we clicked along pretty well until last month June, We had a CT Scan done and it showed many lymph nodes expanding  in my chest area and 2 new nodules on same Lung. So my Dr. Decided we're going with Yervoy, had my first treatment June 22, went good, since I slept most of the way through it, that Benedryl through IV was a knock out punch. I go back on July 10 for blood work with my oncologist, in the mean time I had a CBC done at my regular Dr. They detected my platelet count up? So they sent info to my Onc. And next Friday we'll find out if that a prob or not? My 2nd Yervoy treatment is Monday July 13. The only effects I've had thus far from my Yervoy treatment has been Extreme fatigue, just kinda a sick feeling which is bearable. So just wondering anyone else at my stage in the game ready for Yervoy #2 and maybe what to expect. Yes there are some VERY scary side effects associated to this drug so I'm hoping Gods got this

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