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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Don't forget to join us TODAY, December 15 at 2:00 pm ET for a Twitter chat about handling the stress, sadness and other emotions that often accompany the holiday season for those in the melanoma community. Special guest, award-winning author and licensed oncology social worker Sage Bolte, PhD, MSW, LCSW, OSW-C, will answer questions and provide tips for coping with the holidays. Dr. Bolte is the Director of Life With Cancer, a part of Inova Health System, established to support and provide people diagnosed with cancer with resources to help them understand and cope with their emotions. Dr. Bolte will be joined by Drucilla Brethwaite, MSW, LCSW, OSW-C, who is also an Oncology Counselor with Life with Cancer. 
 
Dr. Bolte is a licensed clinical social worker who specializes in how cancer and its treatments affect people and their relationships, including the psychosocial impact. 
 
Find the MRF on Twitter at @CureMelanoma, Dr. Bolte on Twitter at @LifewithCancer and on December 15, follow #MRFChat.
 

Instructions:

Remember, you don't have to be a Twitter user to follow the conversation! Simply go to Twitter at 2pm ET and search for #MRFChat. If you refresh your screen every minute or two, you'll be able to see the conversation. The chat transcript will also be posted on the MRF website after it concludes.

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Anonymous's picture
Anonymous
Replies 4
Last reply 12/17/2014 - 5:03am
Replies by: Anonymous, Janner, arthurjedi007, AnitaLoree

My father was diagnosed with anal melanoma this past spring.  He had the tumor removed and had a clear PET scan in June.  He just had another PET scan last week and it's showing nodules on his chest wall and some spots on his lungs.  The thoracic surgeon wants to go in, collapse his lung to biopsy the nodules.  I want to get another opinion as I feel like the oncologist made some poor decisions by not insisting on further treatment even after the initial scans came back clear knowing how quickly this spreads.   Also, why he didn't have him seen sooner than 6 mts for a follow up scan seems basically neglible.  My parents aren't ones to self advocate and go with whatever the doctor says but I am very concerned and would like another opinion if nothing else.  Can anyone shed any light on this situation and help me navigate this world of melanoma.  Thank you.  

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With the pain in my hip, leg and shoulder I finally started taking these pain pills. They are oxycodone HCL 5 mg capsules. I had been fighting taking them but I found that worked out to taking more in a day. For now I can get by on 1 at about 10am and 1 at about 5pm. Dunno if I will need more in the future.

First and foremost I was wondering if they hinder the pd1 from working? Dad thinks they help the healing because I'm more relaxed instead of all tensed up in pain but I dunno.

I know they do something to the central nervous system and spinal cord making me feel like I have less pain. I know the common side affects they can also cause is nausea, vomiting, constipation, loss of appetite, dizziness, headache, tiredness, dry mouth, sweating, itching. When I was taking 2 at a dose so about 4 a day I noticed I went into withdrawal if I didn't take another within about 20 hours. I would feel achy but about 10 minutes after taking just one all the achy feeling went away so at least I think that was withdrawal. Since I'm taking them regular now I don't have that.

So I guess my main concern is they don't hinder the pd1 from working. I'm trying to get off them. Thanks to the radiation I think I can put up with the pain in the hip and leg but the shoulder even with heating pads and ice packs is just too much for me anymore without these pain pills. Hopefully I can get the shoulder treated sometime in the future too but I think I'm going to be on them long term so I wonder what they are doing to me. A few months ago my doc mentioned I was doing good and one of the things he mentioned why is because I wasn't taking pain pills. So I'm really wondering about these pills.

Thanks.

Artie

 

 

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Happy_girl's picture
Replies 7
Last reply 12/26/2014 - 6:16pm
Replies by: DZnDef, Josh, 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 9
Last reply 1/2/2015 - 4:52am

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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