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
Stlmag's picture
Replies 2
Last reply 3/15/2017 - 2:06pm
Replies by: Stlmag, maryb-z

Is there anyone receiving Imylgic injections  ?       Husband got first treat today. Only 6 people in Mississippi that I know about.

 

Login or register to post replies.

AVeryHopelessPerson's picture
Replies 4
Last reply 3/15/2017 - 2:01pm

Hello everyone. I have been trying to avoid this community ever since my boyfriend has been diagnosed with Melanoma (three weeks ago) He discovered a mole on his back shoulder and after a lot of begging and shouting from me to get him to a hospital, he finally agreed. And then he got diagnosed with stage 3 C Melanoma. He got the surgery to remove it and some lymph nodes but there are still traces left in his lymph nodes. He's currently getting chemotherapy and so far it didn't spread. The doctors say he has a 35% chance. I couldn't stop crying. My aunt survived stage Three breast cancer and she told me to not think of him as a percentage. (Her doctor told her she is a person, not a percentage.) I think it took her five years to finally be cancer free. I'm not sure what else to say but I don't want to lose my boyfriend at all. All I keep thinking is "he's going to die." Te doctors are already asking him to write a will. Do you think he has a chance to survive this?

Login or register to post replies.

aziza's picture
Replies 2
Last reply 3/15/2017 - 12:48pm
Replies by: CindyCo, Anonymous

I am still new to melanoma, as it is a rare case in Thailand.

My mom, aged 77, has mucosal melanoma at her upper vagina, which could not be removed by a surgery. Now she is having a radiotherapy, external beam .

- Any ideas on how we monitor whether it is not spreading?

- How often do we need a PET-CT?

It is hard to make her not to worry about a radiation. 

Login or register to post replies.

Lddaughter's picture
Replies 17
Last reply 3/15/2017 - 12:41pm

I apologize, I feel like I have been using this board/forum as support, hope, guidance and a way to help us get through this really tough beginning. High overview, the last 2 months have been crazy. My moms masses are primarily in her liver where she is feeling most of her pain and the adrenal gland (hormones are being thrown off I am sure). They explained that the masses lay on many nerves that spread throughout your abdomen and back so they gave her high does of oxycodone to try and help alleviate the pain. That was this past Tuesday. We won't start treatment until next Thursday so until then it is just pain management.

Well, she has been having a rough few days. Extreme fatigue (can't stay awake at all), she feels ok until they wear off and then it is back to extreme pain. She is also experiencing nausea and headaches. We are trying to time it and get the pain under control but she hates the feeling of them and the fatigue that comes with it. We are hoping that once her body gets used to them and it is working together to control the pain she will perk up. I just hate seeing her like this and I know she is having a hard time. Any tips on getting these bad days over? I hate to say it scares me but seeing her so lethargic and in pain makes me concerned. Is it smart to keep pushing food and water or should I just let her sleep? 

Thank you for all your information, I truly appreciate it.

Login or register to post replies.

JoshF's picture
Replies 24
Last reply 3/15/2017 - 6:25am

Hi Everyone! It's been awhile and I've been staying in touch with Paul but figured it's time to update. So I did TIL beginning in February. Ended up with 14 billion cells which the PI for trial said was reasonable. I guess the trick to TIL is having the "right mix" of cells. My TIL cells had good viability so hopefully they can get some work done. I definitely need it. I'm scared, anxious...all the above but doing best to live life. I'm not thrilled about having to go back to Houston every 3 weeks for keytruda. Since I failed Nivo, didn't think it was good option but it's part of trial and doc says new immune system can provide different results. I'm praying that's the case. Outside of that I'm trying to get strength back. TIL does take it out of you for sure.

On another note, I lost a friend while in hospital. He was doing bio-chemo and his body gave out. It's hard part about this disease, you meet people and then they're suddenly gone. I'm heartbroken....he would've been 40 yesterday. I guess it's why I've been staying away from this forum. Too much suffering. Not to mention I haven't heard from Paul in 2 days. 

Anyway, I'm hopeful and not ready to leave my kids so I'll fight on but I'm not going to lie, I'm wiped out. Cmon TCELLS!!!!

Josh

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

Login or register to post replies.

RaquelP's picture
Replies 4
Last reply 3/15/2017 - 6:22am

Has anyone heard from Kerri? Hoping Jake is doing well!

Login or register to post replies.

Lori C's picture
Replies 7
Last reply 3/15/2017 - 5:31am

Will is one week past his first carboplatin and taxol treatment.  He's also on a Fentanyl patch for pain, the first time his hip pain has been properly addressed.  So far, he's feeling very well - eating fine, (he wants to go out for Italian food for lunch) and actually seems slightly less fatigued than before he began chemo, which is a bit mysterious.   He goes back for round 2 on August 10th. 

At this point, we've been extremely pleased with the care from Dr. Howard Kaufman and the nurses at Rush in Chicago.  Dr. Kaufman, who is a surgeon as well as head of oncology and a melanoma specialist, is not exactly a touchy/feely kind of doc but he's honest, careful, attentive, and obviously a very excellent doctor.  A huge relief.  And the nurses have been wonderful, especially given Will has some special needs and is not always the easiest person to communicate with.

I'm hoping things will be stable for a while, at the very worst, and at best, this will really reduce the tumors.

Login or register to post replies.

MichelleRHG's picture
Replies 6
Last reply 3/14/2017 - 10:18pm

My hubby may lose his job. We have had excellent insurance that allowed me to go to MD Anderson as "in network", covers my ipi and testing here at home,etc. HAS ANYONE HERE RECEIEVED TX FROM ACA? HOW HAS IT BEEN?

Login or register to post replies.

BrianP's picture
Replies 3
Last reply 3/14/2017 - 9:53pm
Replies by: Bubbles, BrianP

Stumbled across this trial tonight.  Seems like a pretty good option for those patients made NED through surgery and are weary of trying Ipi or interferon.

 

https://clinicaltrials.gov/ct2/show/NCT02301611?term=%22melanoma%22+and+...

Login or register to post replies.

CindyCo's picture
Replies 8
Last reply 3/14/2017 - 9:16pm
Replies by: kim1224, Cathy M, Bubbles, Anonymous, CindyCo, debwray, BrianP

Sharing an update here in the forum in case it helps someone else.

After being told no more immunotherapy for my mom due to dose limiting toxicities, we were pretty disheartened since all the advances right now are in immunotherapy.  We were offered Abraxane, which only seems to buy time (and Dr. Ribas confirmed that the hope is to slow down tumor progression).  Celeste sent me a lot of trials to look into, and I also emailed Dr. Weber at NYU who she has said will recommend trials that aren't his own (he did! he responded very quickly as well).

In short, this is where we are at right now:

1.  Leaning towards getting the Abraxane as scheduled with hope that there is synergistic effect with the one dose of Keytruda. I know there are Abraxane/Avastin trials at the Rochester Mayo Clinic, but we asked Dr. Ribas about the combo and while he thinks that the role of Avastin is currently unclear, he is open to giving it to us, with the only caveat being that insurance might not approve.

2.  Getting the tumor tested by Foundation One for mutations for targeted therapy.  Dr. Ribas says that there aren't many actionable mutations in mucosal melanomas, but it is worth a shot.  We are also looking into NCI-MATCH, I-PREDICT (supposedly a more flexible version of NCI-MATCH, and the rare tumor clinic at UCSD. Waiting to schedule the appointment with UCSD, which does all three of these.

3.  Seeing Dr. Hamid tomorrow.  He called me today and said that there may be trial options at the Angeles Clinic, so we are going to see what they are.  I have a feeling that it is the Glembatumab + Varililumab combo that Paul is offered, since my mom is excluded by other trials by her severe hepatitis.  Coincidentally, Dr. Weber told me about a varililumab + vaccine trial by Celldex in his email. 

4.  Depending on what my mom's tumor testing reveals, we may look into MEK inhibitors, which Celeste suggested.

5.  Looking into two trials with Palbociclib that Celeste sent to me.  However, these are in PA and Boston, so we have to take the traveling into consideration.

6.  Looking into OX-40 trials that my mom might not be excluded by, as suggested by Dr. Weber. Will do this tonight.

7.  Looking into a Hu5F9-G4 Phase 1 trial at Stanford that Celeste had suggested for Josh.

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 5
Last reply 3/14/2017 - 8:30pm
Replies by: Anonymous, Bubbles, Casitas1, Charlie S

I'm a Stage IV, long term (NED) survivor who is contemplating leaving the workforce.  I'm over 55 and under 60 and tired of my extremely stressful but lucrative job.  The day to day grind and stress is not and has not been healthy both during the battle and even now at NED.  Corporate cuts, continuously looming layoffs and not being a millenial is starting to really get to me...I know that I am very fortunate to have the job, the healthcare coverage and feel very lucky/blessed to have survived through a lot of surgeries, treatments, etc.  I've been NED for almost 9 years and am only getting annual scans and not on any treatments or meds.  Would I quality for SSDI? 

Luke 1:37

Login or register to post replies.

Michelle820's picture
Replies 7
Last reply 3/14/2017 - 9:20am
Replies by: Michelle820, jennunicorn, Anonymous

Hello, was wondering if someone could help me. I had a WLE in late December for a melanoma in situ on my chest area. Margins were clean, etc. While doing my skin check today, I noticed a few pigmented areas at the end of the scar. It's hard to know if there were there initially? Because of how the skin goes through so many color variations during the healing process. Plus, I used a new "MoleScope" device to take pictures of my moles, so of course it magnified the area. Now I am uncertain if this "normal" or not. I only had an insitu, so I wouldnt think anything could recur or spread? But don't also want to blow it off either:/

Login or register to post replies.

nicolepfeil's picture
Replies 7
Last reply 3/14/2017 - 8:49am

My husband was diagnosed with Stage 3 Melanoma that was located on his arm and in Lympnodes under his arm pit, His option at this point was to start Interferon 5 days a week for 4 weeks, then radiation, then an additional 11 months of Interferon 3 days a week.

We were told how horrible this treatment would be but decided to try.  

After one week he was pulled off of the treatment because it was affecting his liver,  He will be starting again in 2 days and at this point we are wondering if it is worth it.  He is so sick, he cannot leave bed  and is wondering if the 5% chance is worth losing a year lying in bed,

I am wondering if there is anyone on here that has completed the year long treatment, or any opinions on this treatment in general?

I realize everyone is different but as newbies to this diagnosis I am hoping to get any advice that is out there, 

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 6
Last reply 3/13/2017 - 11:46pm
Replies by: Julie369, Racetraxx1, jennunicorn, Anonymous, youngann

I have two moles on my face that bother me. No derm has ever told me to get them off but everytime I look at them I get anxiety.  I play several outdoor sports and my face is always in the sun and sometimes im not wearing sunscreen so I'm always worried about these two moles going haywire?  I have never had melanoma but did have 1 atypical mole removed years ago and it was the Lowest level.  The one mole is on my temple and I have always had it. It is about 4mm. The other appeared on the bridge of my nose after a golf trip in 2011.  It is dark, tiny,maybe 2mm but shaped like a lightining bolt which I thought was odd but several derms viewed it over the years and said nothinh.   My question is do you think it's prudent to remove these moles and if so what's the best way to minimize scaring ? 

Login or register to post replies.

jjd583's picture
Replies 11
Last reply 3/13/2017 - 11:28pm

Hi,

 

I have just been told by my GP I have a 4.3mm thickness on the Breslow and 4-5 on the Clark scale , melanoma on my scalp

I am 31 years old and relatively fit.

I'm seeing a specialist this week to have a wider excision done. There are no signs of spread in my biopsy , 

I guess I'm just wondering what to expect and of there is no real answer at this stage until the excision is done.

Any advice or info as to what I'm in for would be great

 

Login or register to post replies.

Pages