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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RJoeyB's picture
Replies 13
Last reply 12/17/2014 - 8:01am

Hello friends,

I'll have to fill in the details later, but for those of you who know my recent background dealing with ups and downs from radiation necrosis over the past six months as a result of CyberKnife from almost two years ago, l had a significant decline in left side motor control deficits and impact of Decadron steroid side effects over the past week.  After much deliberation, we decided to move forward with a second craniotomy which was moved up from tomorrow to today for simple scheduling reasons.  Most of my team of doctors still believe this is necrosis and not recurrent tumor, although there is a possibility it's both, but surgery will get both, regardless.  We're hopeful that the physical deficits that have affected the use of my left arm, hand, leg, and foot, will not be permanent and that the powerful effects of prolonged (6+ months) Decadron use will resolve soon as I'm able to taper down after surgery.

I will post more for the group later as there are some lessons to be learned, but wanted to ask you all for your thoughts and prayers today as we await an actual start time and go over this not completely unexpected bump in the road.

Best, Joe

 

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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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Maureen038's picture
Replies 14
Last reply 12/16/2014 - 10:39pm

There are many very courageous  warriors out there that have signed up for trials with any of the big pharmaceutical companies. The patient has to sign a mountain load of paperwork and give more than 20 vials of blood sometimes and weathered many side effects to try to save his or her life. My husband had hemoyltic anemia after his third dose of ipi/nivolumbab .There are many very dedicated and compassionate  doctors who stand along side of the patient and do everything possible like my husband's physician, Dr. Kirkwood. I think he just assumed BMS would do the right thing. The official word is NO. My husband can't stay on the trial of ipi/nivo because it's working SO well that 8 lung nodules and 5 lymph nodes don't show any activity on the PET scan and they continue to shrink and/ or stabilize. Unfortunately, he has to have VATS   Surgery for the one lung nodule on Dec 22. Please say prayers for my unbelievably brave husband who has worked full time most of the time while going through HD interferon, TIL therapy at NIH and now this trial. If all goes well with the surgery, he will only have 2 spots that showed very little activity.

Wouldn't it make sense that BMS would want this tissue to explore why it didn't work on this one nodule? Couldn't this information possibly help other patients? After my husband has been on nivolumbab over a year, wouldn't they want to have the chance to "cure" a patient? No!! They make billions of dollars while the patient has virtually no power at all.  After surgery, my husband will have to switch to Mereck's Keytruda and hopefully he won't have any new side effects.

Who is looking out for the patients at Big Pharma? This rant is dedicated to Nick Auden and the countless other vibrant lives that have been lost because saving lives is not the number one concern to Big Pharma., making money is. Shame on you  Big Pharma because if your husband or wife had this disease you would NOT play by the rules you make!!!!

Maureen

 

 

s

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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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Nadia's picture
Replies 4
Last reply 12/16/2014 - 12:00pm
Replies by: Nadia, Patina, Bubbles, BrianP

My husband is on Keytruda, he already had 7 infusions, and we are two weeks away from the second CTscan and so far, so good, he had 20% to 50% tumour shrinkage.  He had several side effects, the most common ones being fatigue, sore joints, itchy skin, rashes, and we were able to keep all of then under control without going to the hospital, with only otc drugs.  But 2 days ago he started to develop some sores on his tongue, they are very painful, no bleeding yet, and they look like raw meat. 

I was wondering if anybody else on Keytruda experienced this, and how did you manage it?  Is there any type of treatment, like a mouth rinse or ointment that we can get from a drug store to make the sores go away, or at least to make the pain manageable.

Thank you!

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lsmith - MRF's picture
Replies 4
Last reply 12/16/2014 - 9:15am
Replies by: lsmith - MRF, Anonymous, Julie in SoCal

Hi all,

The holiday season can be a hard and stressful time, especially for those who are battling melanoma (or have a friend, family member or loved one battling). Each year we receive calls from patients, survivors and caregivers asking for tips for coping with the holidays. To answer those questions and more, we're hosting a Twitter chat about "Coping With The Holidays" on Monday, December 15 at 2pm ET with special guest, licensed oncology social worker  Dr. Sage Bolte from Life With Cancer. Dr. Bolte will be on hand to answer questions like "How do I manage feelings of resentment or frustration", "How do I tell young family members why I dont feel well?", "How do I cope with the feeling of 'death' during a time that is supposed to be joyous?", "How do I honor a loved one's memory while still enjoying the holiday?" and more. 

We want to hear from you - what other questions do you think should be addressed? What questions come to your mind that you think would be hlepful for others? Please let us know in the comments below or email me at lsmithdyer@melanoma.org. Thank you for your suggestions and we hope you join us in the chat on the 15th.

Here is a link for more information about joining the chat: http://www.melanoma.org/get-involved/calendar-of-events/twitter-chat-cop...  

Lauren - MRF

 

 

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Anonymous's picture
Anonymous
Replies 1
Last reply 12/16/2014 - 8:36am
Replies by: _Paul_

Been experiencing pretty noticable brain fog lately. Short term memory, forgetting things, etc.

Will be seeing Dr. tomorrow and ask for brain scan, but I wonder if it might be the Ipi.

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sofiaeli's picture
Replies 4
Last reply 12/15/2014 - 10:40pm

Hi everyone.

My husband is currently fighting stage IV melanoma and is about to enter the TIL study at NIH.  Anyone have any experience with it? 

Thanks!

Melissa

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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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The December twitter chat transcript featuring a Q&A with licensed oncology social workers, Dr. Sage Bolte and Drucilla Brethwaite of Life with Cancer, is now on our website! 

Check it out!

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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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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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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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Replies by: arthurjedi007, tschmith, Anonymous, rick1981, JustMeInCA, Momrn5

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 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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