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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keepthefaith11's picture
Replies 17
Last reply 2/26/2017 - 3:06pm

Quick background. My dad was diagnosed with stage 4 melanoma back in July. He had 13 tumors in his brain which were discovered because of the seizure he suffered.

He went through whole brain radiation, which was the only treatment they would do in his home of Sweden. They only do gamma knife on four or fewer tumors. I was firmly against this but we were left with no choice. Two months after diagnosis he had another seizure and two months after that yet another one.

He got through five infusions of opdivo before developing diarrhea and it had to be discontinued. In December he got really ill with the flu and was hospitalized. Ever since then he has been deteriorating. Last week he started running a super high fever and his blood pressure plummeted and pulse went up to 180. He was rushed to the emergency room and they suspected it could be sepsis. They are still not sure if it were but either way he was in bad shape. He came back from that and it's stable now.

His overall condition is now to the point where he is unable to move, sleeps most of the time, and it's pretty much in a daze most of the time when he's awake. He does have moments where he is completely on and will respond clearly and talk. It is like he drifts in and out of awareness.

This is mind-boggling to the doctors since the latest pet scan and MRI shows disappearance of two lymph nodes in the abdomen and brain scan shows disappearance of many tumors and 50% shrinkage of the others. He has been on TAF/MEK the past six weeks. We are all wondering how he can be acting so completely sick when the cancer has gotten so much better. They are discontinuing the anti-seizure medication to see if that could be part of it. They have done all tests on pituitary and thyroid function as well as Vitamin deficiencies.

The latest brain scan did show damage in the white matter of the brain and it looks like fluid is not flowing properly. So today he ended up having a spinal tap and pressure check of the brain. We have not heard back yet. They will put in a shunt if the tests show issues in that area.

The doctor is talking about possible brain damage from immunotherapy which to me sounds completely unrealistic. Looking up the odds of the severity he is experiencing being from immunotherapy it's pretty much unheard of from what I've read.

What do you guys think? Has anybody heard of white matter damage in the brain with brain tumors? Or what could be causing this?

It is so incredible that he has responded so well to the cancer treatment and cancer is not our worry at this point. All the other issues are. We would be on cloud nine with these kind of scans if it weren't for the fact that he pretty much acts like a physically handicapped person with dementia.

Any help will be appreciated!

Annie

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casagrayson's picture
Replies 0

Has anyone heard from Juan or Stacey?

Strength and Courage,

Susan

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BrianP's picture
Replies 13
Last reply 2/26/2017 - 12:04pm

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Anonymous's picture
Anonymous
Replies 5
Last reply 2/26/2017 - 10:55am
Replies by: AliCat61, Janner, Anonymous

Do you feel that that 'D' for diameter isn't useful for melanoma diagnosis?!
Just wondering, what was the diameter of your melanoma at the time of diagnosis? Was your mole growing in diameter or stayed the same size?

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ryanbkyle's picture
Replies 17
Last reply 2/26/2017 - 8:30am

I am a generally healthy 54 year old woman who has been diagnosed with Stage 3A melanoma.  I had the wide excision and the sentinel lobe dissection. One out of three lymph nodes showed a microscopic trace of cancer.  I now have to decide on treatment, and would like advice from those that have gone through this.  My gut is telling me to take one day at a time and see what happens and be monitored by my oncologist -- not to do a CLND or the Interferon and IPI treaments.  Any advice would be appreciated?  Thank you!

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Anonymous's picture
Anonymous
Replies 3
Last reply 2/26/2017 - 4:17am
Replies by: UBContributor, jennunicorn, Anonymous

If melanoma was on the lower lig which lymph nodes it will usually transmit for? Is it in groin area? Or it could be behind the knee? and what they usually feel like?

Thankyou for reading

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MichelleRHG's picture
Replies 3
Last reply 2/25/2017 - 8:47pm

I just started adjuvant ipi and have read various reports about Curcumin while on ipi. You guys are the experts...do you know if its ok?

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CHD's picture
Replies 3
Last reply 2/25/2017 - 10:58am
Replies by: CHD, Bubbles, UBContributor

Just wondering, got my labs back yesterday and melanoma doc said all OK but platelets were on the high (438).  Said just something to be watched and will repeat labs in a few months.  I figure if it was worrisome, she would not be willing to wait a few months to repeat.  But knowing there CAN be a link between high platelets and cancer recurrence, decided to come here and ask how common it is here to have elevated platelets as part of a melanoma diagnosis.

Any input welcome.

I am one of the mucosal melanoma survivors, 3, almost 4 years out from initial diagnosis, clear PET CT last year.  Try not to worry where there is no reason.  Still whenever anything unusual happens, my mind does race.

Cheri

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rabbits68's picture
Replies 11
Last reply 2/25/2017 - 10:27am

I have progressed on Keytruda and my doctor wants to start the chemo drug Abraxene. I am not sure if this is the next step I should take. At this point I am considering going to either MD Anderson or Sloan Kettering. Does anyone know how I go about getting a consult or having someone look at my records. Short history: failed Yervoy, failed Mek combo and now failed Keytruda. Does chemo seem like the next logical step? Any advise is appreciated. I am feeling unsure and scared. Thank you

LisaG

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Anonymous's picture
Replies 4
Last reply 2/25/2017 - 1:35am
Replies by: Anonymous, Polymath, stevenallenschwartz

Its crazy how stage 4 has a way of moving the goalposts as to what's good news and whats not. I'm currently stage 4C, but have had a good rersponse to PD-1. Has anyone had any experience with trying something new after achieving "stable disease"? I've been pretty lucky (and feel healthy still!), but some stubborn mets remain -- has anyone tried and been able to get radiation or something along those lines at a similar point in time? I really don't like the idea of just being passive while PD-1 fights ther mel to a stalemate. I'm hoping to have a serious discussion about surgery with my doctor at some point, but don't think that's an option at present. 

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marta010's picture
Replies 6
Last reply 2/24/2017 - 11:28pm

After 5 tremondously difficult years, my husband FINALLY is responding to treatment!  His latest PET/CT scan showed a significant reduction in the tumor activity in his cervical lymph nodes and minor reduction in his periportal and portacaval nodes.  Better yet is that his brain MRI showed stability with no new tumors.  His last Keytruda infusion was in July 2017 - had to take a break due to a sudden brain edema event that required a craniotomy and Gamma Knife.  Currently, he's continues to take Dabranib - we hope to discontinue that after his next scans in 3 months if the response continues.  His quality of life still is hampered by joint pain in the hips and knees which limits his mobility.  Would love to know what others are taking to mitigate this side effect.  Thanks.

Ann

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Aaron's picture
Replies 11
Last reply 2/24/2017 - 10:47pm

Ok.  So before I go a little further I will give you a shortened version of the whole story, like I always do, for those who are unfamiliar or have forgotten.  

NIVO/IPI combo

1st scan everything reduced by 1/2  Roller coaster high

Pituitary enlargement and vitiligo develops and  put on Prednisone complete only 3 of 4 Ipi and continue on Nivo  Roller Coaster high because I'm thinking I am responding but also low because I want the 4th dose and questioning what my life will look like now on all these new meds to replace pituitary function.

2nd scan no growth no shrinkage; stable  Roller coaster low; questioning if my good responses were over.

Tuesday I had my third scan.  I originally had 20+ tumors and now only have two measurable tumors left and they are shrinking!  Thank God for modern medicine and for being with me and my family through this.  I know it isn't over and that NED is not "cure" but I can't help but feel I am going to beat this.  ROLLER COASTER HIGH!

 

Wishing the best and for all as always.

Aaron

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Replies by: Mat, Anonymous, brendon, Lddaughter, J.bun, debwray, jennunicorn

Hello, 

We are new to this whole stage 4 diagnosis and we are desperate to start a treatment. A little back story, my mom got sick at the beginning of January. After an initial CT and U/S they said she has spots and wanted a liver biopsy. The liver biopsy identified our cancer was Melanoma. She has it heavily in her liver and small spots on her adrenal gland, kidney, and 2 small spots on her lungs. Good news, the brain is clear. The biopsy was sent back for mutation diagnosis but they said we won't get that until the end of next week or 2 weeks still. We are working to set up a referral to a great university department but just feel like there is nothing we can do until we get the mutation results. Is this typical to feel like you are in limbo before treatment or is there something we should be pushing for? We keep hearing that Melanoma is unlike any other cancer so reading posts from this site have been helpful! She lost a lot of energy at the beginning so we are working on diet and rest to start getting strength back. I feel slightly helpless so I can only imagine how she is feeling right now. 

 

Thank you for reading.

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Anonymous's picture
Anonymous
Replies 12
Last reply 2/24/2017 - 2:55pm
Replies by: Janner, Anonymous, UBContributor, J.bun, jennunicorn, Gene_S, Hukill

Is it really caused by Sun exposure? I don't think so. There are many many people enjoying each day in their life soaking up the sun, tanning, not applying sunscreen and never get melanoma, while others never do these stuff and it happens to them in a young age. I just don't know what really causes this disease! It's unfair.I hate it.
Sorry but I'm very disappointed and just want to say it.

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Its crazy how stage 4 has a way of moving the goalposts as to what's good news and whats not. I'm currently stage 4C, but have had a good rersponse to PD-1. Has anyone had any experience with trying something new after achieving "stable disease"? I've been pretty lucky (and feel healthy still!), but some stubborn mets remain -- has anyone tried and been able to get radiation or something along those lines at a similar point in time? I really don't like the idea of just being passive while PD-1 fights ther mel to a stalemate. I'm hoping to have a serious discussion about surgery with my doctor at some point, but don't think that's an option at present. 

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