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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Casitas1's picture
Replies 4
Last reply 7/23/2016 - 1:19am
Replies by: Anonymous, Lee Parlier, Casitas1

Been on Keytruda  January of this year. Caught a virus two weeks after 1st. infusion. I have had a productive cough with bad taste ever since. Just wondering if anyone has had this as a side effect? Cough is listed as one...

Best,

Paul

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Lee Parlier's picture
Replies 5
Last reply 7/22/2016 - 11:41pm

I received my pet scan results yesterday and they were bad. Multiple mets in neck, liver, lower abdomen, pelvis etc. The SUV was around 4.00-5.00. My prior pet scan was clear on Feb. 29. I had lymph node removal in March in the left groin with 6 showing metastasis. I started yervoy and radiation on May 26 and due for my 4th ipi treament next Thursday. 

I did have the satellite tumors pop up and the sub q's that were purple. Most have disappeared. I see the melanoma Dr. and surgeon next week at Duke. 

Just a few questions:

1) Has anyone that tried the immunotherapy experienced a worsening before finishing treatment?

2) Is the disappearance of the visible sattelite tumors a sign that the ipi is working?

3) How long does it take to know if you are a responder to ipi? (I am currently 7 weeks)

 I know the melanoma Dr. will answer these questions next week but I know there are a bunch of melanoma fighters that have talked to some of the best Docs in the field and I would welcome any input or answers you may have been told. Thakns, Lee

Lee Parlier

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ecc26's picture
Replies 3
Last reply 7/22/2016 - 9:45pm
Replies by: ecc26, kylez, JoshF

Starting last Friday up through today I have spent the better part of every day (except Tuesday) and one overnight in the hopital. My poor husband has been with me every time and so has missed much of his work week as well. Hoping this trend doesn't continue.

Last Friday I started the week with a regular visit with my oncologist before Monday's scheduled infusions of IPI/PD-1. After looking at my bloodwork and listening to my complaints of worsening belly pain (not nausea) over the previous couple of days he decided to admit me overnight for a chest/abd/pelvis CT and a blood transfusion. He also more or less banned NSAIDs as a method of pain relief and told me to use Tylenol (virtually useless) or opiods (which make me dizzy, nauseated, and generally non functional). I wasn't very happy and we ended up with a compromise that I could use Advil and a muscle relaxant in the morning (back pain) to be functional, and the opioid in the evening when I don't need to be functional, just sleep.

I was discharged Sat morning following the CT, and 2 units of blood. As many know, hospitals are not restful places to start with, let alone with the additional monitoring that comes with a blood transfusion. I spent most of the rest of the weekend resting.

Monday morning I went back in early for a recheck and to get my infusions. They added an IV Fe and started me back on Zometa (for bone strength), so by the end I was there from 8-2. Just got a light lunch and went home- no point in trying to go to work.

Tuesday didn't go to the hospital, but abdominal pain got more prominant, and by Wed morning didn't even dare put water into my stomach I was in such pain. Calle my oncologists office and they had me come in- husband drove and 2 L of fluids and multiple IV meds later we were there from about 9-3, with instructions to come back today @ 10:30. We were there at 10 hoping to be done and have me home before my husband's 1:00 meeting. Didn't happen. While we got started early enough, didn't get the Dr visit, meds, and port de-access until around 2. Husband had meetings at 2 and 3, obviously missed the 2, but instead of being at home resting, I'm hiding in my office waiting for him to come back and get me. His meeting just ended, so we'll be on our way soon.

Not what either of us had in mind for the week, but he's done so much I can't get mad about this. Hoping to not have to go back to the hospital again for a while and planning to just stay home tomorrow.

-Eva

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Ajwells's picture
Replies 9
Last reply 7/22/2016 - 7:07pm

I talked to my medical oncologist last week about starting Yervoy for adjuvant treatment. I decided it is the right choice for me with the research I've done and me being only 27 with all of these years ahead of me for this to come back. I know all of the statistics and the decision wasn't made lightly. But she had told me we would be waiting at least another month or so to get started. I got a call today and they scheduled my first infusion for a week from tomorrow!  Now I'm getting a little nervous. 

Are there any things from personal experiences that I need to know to get ready?  Things I should avoid? Alcohol?  With my children in daycare illness runs rampant in my house. My best friend's wedding turns to be the weekend after my third infusion and I'm worried about that.  Is it okay for me to take my Klonopin the morning of treatment?  I mean yes. I should probably ask my doctor. But I'm wanting personal experiences I guess. The first infusion is pretty mild right?  You just do the thing and get on with your day?  If I'm going to start feeling fatigued and sick is it going to happen between my first and second treatments or does that pretty much start after the second and third?

i want to work SO BAD. Especially with our busiest time of the season coming up in August and September. My counter is counting on me to get our numbers back up. And if I do get some of these side effects that prevent me from doing my job the way I need to I'll let them down again.  

I know in my heart I want to do this. Even if the chances are only 25% better. I'll take anything to not have to go the last three months of my life again. 

27 year old mother of three. Diagnosis stage 3a.  Awaiting immunotherapy. 

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jennunicorn's picture
Replies 16
Last reply 7/22/2016 - 6:06pm
Replies by: jennunicorn, kylez, Anonymous, Bobman, Polymath, JoshF, Gene_S

My dad sent me this article, thought it was very interesting.

http://www.today.com/health/how-red-hair-gene-raises-skin-cancer-risk-t1...

I am the only one in my large family with red hair. When I first met my melanoma dermatologist she told me that even if I had never seen an ounce of sun in my life, I probably would have ended up with melanoma anyway due to the red head gene. It's like I was born with 2 decades worth of UV ray exposure without ever having seen the sun yet, pretty wild. Any other gingers on here will find this interesting too. 

It's also for anyone with light hair and light eyes... you likely have the ginger gene in you too. 

 

Jenn - Stage IIIB  (currently doing Ipi [Yervoy] adjuvant treatment)

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JoshF's picture
Replies 13
Last reply 7/22/2016 - 4:55pm

Justa quick update and a few questions. I had an MRI on pelvic area to see if what showed on May Pet Scan was indeed Bone Mets. Confirmed so I had bone scan yesterday to see if it is anywhere else in bones. I have an appt with Radiation Oncologist Thursday in the hopes we can add some radiation in with the ipi I'm doing before I head back to Houston in early September for Adoptive Cell Theraphy. Needless to say my anxiety has gone up another level. I keep wondering if my shoulder has it, my right elbow, my ribcage...areas that I now question. I always thought that shoulder and elbow were from weight lifting...hmmmm. Couple of questions that Itried finding but didn't find anything concrete...

1) Can or will they radiate multiple bone leisons?

2) Is there anywhere they can't radiate...i.e. ribcage if in fact it does show up there.

3) Does immunotheraphy work on bone mets?

I need to start getting some more W's in the win column here. The waiting and anxiety is overwhelming. Like all of us, I have a lot to fight for so I'll answer the bell. Appreciate everyone's love & support here.

Josh

Let's work for better treatments....for a cure!!!!

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slh4448's picture
Replies 16
Last reply 7/22/2016 - 3:23pm

Hello everyone,

My name is Stacy and I'm a 51 year old male that was diagnosed with melanoma back on May 24th. The original pathology report from my Dermatologist came back stating Clark's level IV, 2.37mm with no ulceration on my right knee and malignant melanoma in situ on my right neck. My chest xray is clear. I live in Kansas City. I went down to MD Anderson on June 22nd and met with Dr. Royal for a second opinion. Both Dr. Royal and my Surgical Oncologist here at the University of Kansas Hospital Cancer Center believed that my right knee identifies more as stage two.

Last week on July 12th, I had a Sentinel Lymph Node Biopsy of one node removed from my groin area. I also had a wide local excision procedure on my right knee and right neck. The pathology report that came back states each location is negative for melanoma. However my SLNB came back positive for metastatic melanoma. 3mm in maximum diameter and involves 7% of nodal cross sectional area and negative for extracapsular extension.

I was given these results on July 18th. I was told because of the positive lymph node, that my melanoma is now at stage three (T3aN1a). I have a pet scan scheduled for July 25th and an mri of my brain scheduled for July 28th to determine if any other areas have been affected. I meet with my surgical oncologist on July 28th to go over all of the upcoming results, etc.

I have sent my latest pathology report down to my oncologist at MD Anderson for his opinion as well.  

I would welcome any thoughts, suggestions or ideas as to how I go about attacking this from here.

Regards,

Stacy

 

 

 


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btcedarr's picture
Replies 6
Last reply 7/22/2016 - 2:47pm
Replies by: btcedarr, keepthefaith11, Anonymous

I had a Stage 1b melanoma removed in October followed by a WLE and negative SLNB. I have been going to my dermatologist every 3 months. Last week she noticed a mole on my back that looked a bit inflamed and removed it for biopsy. She thinks it's "nothing", I heard that before! Lol! But, with my history she removed it. I keep reading that inflammation is a sign of melanoma. Is this always the case? And if it wasn't pink around the border 3 months ago, shouldn't be anything too advanced if it is, correct?

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jade1111's picture
Replies 8
Last reply 7/22/2016 - 12:53pm

Hello! So my mom went to the Drs today.. they decided no infusion based on the rash.. the rash is pretty severe.. they all looked a little shocked.. purple like bumps all over legs and back and some on arms. Also revealing itself was a small purple hard like mass on the arm pimpke sized (her original site is leg). Has anyone heard of these little mets showing up with therapy? They said for now  no biopsy they will just monitor. Was not expecting that part.

Thanks!!!

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Anonymous's picture
Anonymous
Replies 4
Last reply 7/22/2016 - 11:58am
Replies by: Lee Parlier, laulamb, Anonymous

I recently completed surgery. 29 Male. Bilateral LND to level 2 lymph nodes and a quite large area taken off my back for a quite large tumor. Left side started as a SLND but it tested positive so they took the remaining out.

 

I was diagnosed at level 3, I assume 3c given the extent of my surgery and the way lymph nodes on my right side lit up on my PET scan results but I don't know the specifics.

It seems once I leave the hospital (I've been here for about a week as they take care of my skin graft and lymph drains) they want to put me on interferon.

 

I am struggling with the decision still. Part of the reason is that I live and work in a foreign country (home is America) so my family is not here and I am worried if I would be able to work. If I were to use the medicine, it seems like my only option would be to live with my parents again. Part of the reason is there seems to be a lot of divided opinions on interferon. Part of the reason is that I am nutrition and exercise nut and feel I could make sure I am eating the right foods and getting a balance of healthy exercise while staying positive (if I were to go with wait and watch option)

 

If you've read this far, thank you. What I'd like to know is anyone's opinion on interferon, specifically with regards to stage 3 patients. I also saw the 2/2016 study that said interferon showed no effectiveness, but I believe the patients had a much less complicated lymph node situation.

 

cheat sheet: looking for any opinions or advice on interferon, questions to ask doctors (scientific or personal), personal experiences, when/why would you / wouldn't use it.

 

Thank you and I hope everyone is finding the strength to remain positive and live without fear : )

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Anonymous's picture
Anonymous
Replies 2
Last reply 7/22/2016 - 11:36am

Hey guys, I have noticed a bright purple/brown spot on my chest. It bled a little a month ago then never anymore. It seems to have remained the same, but could it be melanoma? Or else, what could it be?

 

Thank you!

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BrianP's picture
Replies 3
Last reply 7/22/2016 - 9:08am
Replies by: Ed Williams, JoshF, Polymath

Pretty interesting article on the abscopal effect and work being done on trying to figure it out.

http://www.pbs.org/wgbh/nova/next/body/abscopal-response/

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Rita and Charles's picture
Replies 5
Last reply 7/22/2016 - 12:10am

After 9 months on Braf Combo, my husband was suffering still with such nausea and joint pain that he stopped.  He was 2 1/2 months without meds and we feared the worst PET Scan results.  The oncologists were as surprised as we were relieved - no progression, still stable!  The only thing that happened within the 2 months off is that he developed vitilligo..........but the good results are what we really loved.

The Combo worked!  We don't have scans scheduled now until October :)  Vacation from worry worry worry and fear......for now!

Rita

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Jewel's picture
Replies 7
Last reply 7/21/2016 - 11:56pm

Hi there,

   My husband has been lucky enough to have responded to IPI this far. We will be having scans again in a few

weeks that if hopefully NED will put him at the 2 yr mark. My ? is those of you who have responded long term

were you on the 3mg or 10mg dose? Thanks for taking the time to reply.

Jewel

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Hello everyone! I am curious if anybody out there has been in this clinical trial? I am a Stage 4 patient who completed 4 doses of Ipi ( October 2015 - December 2015) and was not a responder. I did 2 follow up Pet Scans after treatment on Dec 17th and January 28 which showed my main tumor (chest wall) was still growing..and now I have several subcutaneous tumors around my upper torso, but mainly seeming to favor my left side of my body. I have a great melanoma specialist who has been working with my husband and I but is now recommending I move forward with a clinical trial. I shouldn't be surprised at how invasive the pre-testing for a clinical trial is but sometimes it feels overwhelming. I handled the Ipi really, really well with very little side effects besides some minor itching but I always get nervous when it comes to new drugs. This trial includes taking the pills (epacadostat) every day and the infusion of nivolumab every two weeks. Has anyone been through this? Side effects? Reponses to the treatment? We've been going through this for almost a year and I feel like we're starting to grasp at treatments because we keep getting let down every time I have a scan update. Very frustrating but I'm also very determined to WIN! any input would awesome! Many thanks and love! Niki

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