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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Happy_girl's picture
Replies 5
Last reply 12/14/2014 - 8:46pm
Replies by: Happy_girl, Anonymous, Linny, 5dives

Hi everyone! Elaine, you posted something similar the other day.  I'm wrking hard at my mental game for melanoma.  I have had a cough for about a week- mostly at night. And I trying not to freak out. My dr did order a chest X-ray which has me even more panicked.  I am truly hoing the fear lessens over time!  Have a great christmas everyone!

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Anonymous's picture
Anonymous
Replies 4
Last reply 12/16/2014 - 8:49pm
Replies by: Anonymous, BrianP, kylez, arthurjedi007

Has anyone had success on Keytruda even after being diagonised with leptomeningeal metastases/ spread of melanoma?  My loved one is to start Keytruda on Monday 12/15.  Wondering if it is going to help the LM?  Thank you for any information.

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Ashley's picture
Replies 2
Last reply 12/15/2014 - 9:46pm
Replies by: BrianP, arthurjedi007

I know I've asked a similar question before but my dad just had his scans and we get results on Monday...

He had a great response from the first set of scans after starting a PD-1 and targeted therapy trial.  His LDH levels were very high at the beginning of melanoma diagnosis and begining of PD-1 trial, and they have continued to drop.  This has been a good sign so far for us, but just wondering...

Has anyone been on PD-1 and had it work at first and then stop working?

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eturner82's picture
Replies 9
Last reply 12/13/2014 - 10:14am
Replies by: Ed Williams, kylez, BrianP, eturner82, arthurjedi007, BP, Anonymous

Hi guys I'm in need of any and all advice, My husband just finished Yervoy and had scans 4 weeks out.... Dr meet with us and stated no new bone growth and we would rescan in 3 months. Great news I know!! the problem is yesterday dr called and said he had pulled the scan to tell us before he had read the report that came with it. He said the CT report that I would be reading in my husbands mychart was going to be very concerning to me as it would read that a lung nodule had increased in size by 1mm but that he had looked and looked at it and saw no enlargement at all.I was ok with this news knowing things get bigger before smaller with ipi, dr said trust him and continue with 3 month plan. I then got on his mychart to look at the repost myself it states........ three 3mm nodules increased to 4mm and one 4mm to 5mm.... NEW 6mm pulmonary nodule NEW 5MM pulmonary ( all in  middle lobe)also a NEW 9MM nodule within the upper lobe. New thicking at the suture line at right middle lobe resection area concerning for recurrent disease. Also New destructive osseous lesion of the 5th right rib and 4th and 6th  left rib. Also many lymph nodes in the chest have enlarged. I'm very confused as to why the doctor failed to say anything about the new growths. I am VERY  upset at this point and have no clue what to do... 3 months seems a really long time to go between scan..... up to this point bone mets in spine and hips was our major problem. So if anyone has any advice please give it.

Emily

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Anonymous's picture
Anonymous
Replies 7
Last reply 12/17/2014 - 11:21am

Hello all,

There's loads of great posts on this forum about treatments, but I didn't find anything about the period when switching from one treatment to the other.

My wife is Stage IV, diagnosed in June after several weeks of fever & lesions under her skin appearing, and after many blood tests they ultimately discivered metastatic melanoma after a CT scan. All major symptons disappeared within the first weeks of being on the Dabrafenib/Trametinib combo and her tumors started shrinking on the following CT scans and ultimately she become PET negative on October.

However, on the next scan in December tumor growth was observed, not only in the main sites (liver, spleen) but now also in her bones in several places. We're now onto immune therapy.

Since it may takes weeks, if not months, for that therapy to work, we're in a free fall at the moment. Her condition is worsening and we feel new nodes under her skin. The fevers and night sweats are also back.

So I have two questions:

- Is there any data on how fast the immune therapy typically needs before it kicks in? I know averages are not very useful here, but maybe there is % after x weeks, % after x+2 treatments, etc information.

- How did you feel in this period in between treatments? Did you feel worse, did you get additional treatments, were you hospitalized? How did you cope with it mentally.

For my wife it's very tough as we believed we were on a path to some type of recovery, but now not only is the tumor growth back, so are the symptoms, so it's like starting all over again which is something she had blocked out as a possibility.

Thanks for sharing your "free fall" experiences, and we hope that the parachute will open soon!

Thanks, Rick

(PS. I have posted here several times before but wanted this post to be anynymous for personal reasons, hope you understand)

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Marianne quinn's picture
Replies 1
Last reply 12/15/2014 - 11:44am
Replies by: arthurjedi007

My husband was diagnosed with stage 3C melanoma under his thumbnail in Sepetember 2013.. After a partial amuptation and a lymphendectomy, he started on the ip vs. Interferon trial. He completed the induction phase of 10 mg. ipi and was able to manage the side effects. In week 14, a CAT scan showed a small metastasis in his liver. He was removed from the trial and did not receive any maintenance doses. We were devastated by the news and the removal from the trial. He underwent successful microwave ablation of the lesion. Our Christmas present was a clean scan today-nine months after progession on ipi. His 3rd clean scan. Our doctor is optimistic. It was nice to hear after all the negative stuff you hear when first diagnosed.

My question is does anyone now if the maintenance doses are effective?

I think that my husband is a responder to ipi. I would like BMS to examine his blood.I think it would be provide beneficial information  to BMS. Does anyone have an idea of how to make that happen? We have Kaiser and I am basically pleased with them, but I doubt if Kaiser would point us in the direction to get this done. I don't think they would be opposed to it either.

Wishing all of you mel warriors and their families a healthy new year.

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Dear MPIP Community Members,

We are working to create an extensive album of melanoma photos to be used in our education and media efforts. It is our hope that this album will help people learn what melanoma looks like and what to look for on their own skin and the skin of their loved ones. If you have photos of a mole or lesion that was diagnosed as melanoma and would be willing to share them with us, please send them, along with any details you would like to share, to me at education@melanoma.org. We are also interested in photos of moles that looked suspicious, but upon biopsy, turned out not to be melanoma. Upon receiving an email from you, I will send you a photo release form for you to fill out, giving us permission to use them. 

Thank you, in advance, for considering this request. Please don't hesitate to ask if you have any questions.

Sincerely,

Shelby - MRF

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sweetaugust's picture
Replies 7
Last reply 12/15/2014 - 11:19am

Just giving you all another positive update.  My scans are totally stable and clean again.  I just had my 37th treatment of Keytruda yesterday.  I am now 2 years and 1 and a half month into Keytruda.  The doctors decided to just have me stay the course as things are going so well.  Merry Christmas to me!!!  :)

All my best to all of you fighting the fight.  Laurie

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Jsneathen21's picture
Replies 6
Last reply 12/18/2014 - 10:37am
Replies by: Janner, Jsneathen21, Anonymous

I am 26 years old it took approximately 2weeks for the dermatologist to tell me my results of this even... They sent it off for second opinion at a university even.. To tell me today I have this? And that it's rare in my age group and at all!! Does any one know anything about this rare type? Please let me know thank you!

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jenny22's picture
Replies 4
Last reply 12/10/2014 - 10:36pm

Hi to all who may read this....

It is hard to stop my mind from wandering, and my fingers from clicking away on the internet. After making it through 6 years with my husbands stage IIIA lung cancer diagnosis, I thought i would have been better able to handle all these feelings and fears.  He is a SURVIVOR and doing great almost 6 years later.

But I remember the beginning and all the those awful thoughts you cant stop thinking.  So now I am stage IIIB melanoma, just 14 months after stage 1B.....everyone said i had better than a 90% chance of no recurrence....so i guess i am just one of the unlucky ones.

A few things I wonder about:

1.  Is it worse to be diagnosed at stage III, or progress from stage I to Stage IIIb......?

2. I am considered IIIB based on intransit mets, (2 very small .5mm subq bumps near orig site) but with negative nodal status.....considered N2c....i have even been able to find some data that says N2c has a 69% 5 year survival as compared to overall IIIB which shows 59% 5 year survival.  (though we know all these stats are old)

3. So hard not to have many treatment options in the adjuvant setting for recurrent, resected IIIb......watch and wait doesnt feel great.....working on vaccine trials.

4. I know some poeple do survive this, but how likely is it that IIIB always progresses to IV?

5   It recurred in 14 months after stage 1, so worried that makes it more likely to spread again, and faster....

I have seen MEL experts at SLoan and NYU (michael postow and anna pavlick)....waiting for further info on vaccine trails from NYU, sloan has none.  Monday seeing Philip Friedlander at Mt. Sinai who may have trials and similar consultation tomorrow at Rutgers with Janice Mehnert for other trial info.  Even keep wondering about Interferon, though less interested in that.

I am a voracious reseracher and find myself online after midnight when i cant sleep.....wodinering if i should be running to MD anderson, Dana Farber....etc

What to do, how to get thought this???????????????  as we know many who have survived this are no longer here and writing daily...as they are out just lviing their lives..... so we see more of "us" who are in the thick of it, everyday

As the subject said: "so many questions, so much fear"

Thanks in advance for any replies and insight!

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_Paul_'s picture
Replies 9
Last reply 12/12/2014 - 6:27pm

I started ipion 9/24 and was scheduled for my last infusion on 11/26. My onc suggested to skip the last one as my pituitary more than doubled in size and I am now on prednisone and testosterone as a result. My next PET/CT scans are not scheduled until end of January and I can feel change occurring in my abdomen (it feels like a new tumor is growing on my left side under my rib cage). I don't want to wait that long since according to the onc the conventional outlook after stage IV diagnosis is less than 1 year, and it has already been three months since I was restaged. The way I look at it is if the ipi failed, then I have used up 3 of those months. I know it takes time for ipi to work but if there are new tumors or a lot of growth I am hoping to get on Keytruda sooner rather than later.

My onc is going to coordinate with my clinical trial Dr. (I am on a trial that combines ipi and stereotactic radiation of one tumor) so see about doing just a CT earlier.

So let's say I end up on the Keytruda. From what I have been reading Keytruda is slow too, but maybe not as slow as ipi. When do you decide whether its working or not? How long does one wait? I know these are subjective questions, and individual reactions are all different, but there is so much experience here on this board.

In the meantime, my sister who is a GP suggested I investigate palliative care while I am still in good shape. So I met with the folks at SCCA in Seattle and while it was a difficult conversation, I am away feeling good about their ability to manage pain should treatment fail. The nurse practioner I spoke too promised me that they could prevent a horrible agonizing death. Of course I am hoping to avoid dying any time soon, but it is comforting not to have to fear a bad outcome!

Thanks! - Paul.

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Anonymous's picture
Anonymous
Replies 1
Last reply 12/10/2014 - 3:05am
Replies by: JerryfromFauq

Trial for mucosal melanomaa journey men:   ---- http://trialx.com/clinicaltrial/86899/mucosal-melanoma-su011248-patients...

 

I'm me, not a statistic. Praying to not be one for years yet.

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Anonymous's picture
Anonymous
Replies 4
Last reply 12/14/2014 - 5:30pm
Replies by: casagrayson, Anonymous

Has anyone had any success using alternative therapies in treating their melanoma either in conjunction with mainstream treatments or as stand alone treatments?

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spitfiregirl's picture
Replies 4
Last reply 12/10/2014 - 2:20pm
Replies by: Ed Williams, spitfiregirl, Anonymous

hi everyone, first time joining the board, but have been reading your posts and gaining knowledge and strength!

I'm a few weeks away from determining which clinical trial to participate in (or worse case - biochemo!). I will time out of these options around 1/8 or 1/9. I'm stage 3A resected (1 SLNB found, other 18 nodes clean - they thought it was .5mm but they went back and were able to find aggregate cells to bring it to the >1mm mark, which should allow me to participate in the BRIM study)

It turns out I may qualify for the BRIM 8 clinical trial - I was wondering if anyone has participated in this, and what sorts of side effects I could expect. This is a placebo/drug trial (2 of 4 will receive drug).

The vaccine Trial is placebo/drug trial, but 3 out of 4 will receive the drugs.

Lastly, my (new to me) oncologist also suggested BioChemo - which I know is very toxic and intense. Has anyone done this and what were your results.

 

Thank you so much for your help & support!

~h

 

 

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yazziemac's picture
Replies 8
Last reply 12/10/2014 - 12:25pm
Replies by: yazziemac, Anonymous

Hi Everyone

I've posted several times about my Stage 4 husband, Pete, who is soon to undergo Gamma Knife radiation for brain mets after a successful Craniotomy 11 days ago.  He is being treated at Princess Margaret in Toronto.  I was hoping to find some fellow Canadian patients/caregivers, as sometimes our treatment options are a bit different than those in the US.  I live in Kitchener, Ontario, an hour west of Toronto.

Yasmin

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