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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danny201819's picture
Replies 3
Last reply 3/1/2019 - 8:28pm

Hi, My mom had two infusions of Opdivo so far and she has no side effects ( little dizzy on the second day only )  Does that mean opdivo is not working ?  Is there anyone out there who had opdivo worked without aby side effects ? My mom is 58 and was diagnosed with vaginal melanoma in Oct and was not a candidate for surgery as they would have to cut out alot. Her lymph node shrunk to half in january before starting any treatment and her blood work looks fantastic, I am telling this becuase i am wondering she doesnt has any side effects because she is very healthy or because Opdivo isn;t doing anything. Please share you expereince if you had resuklts with opdivo without any side effects

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Derdew's picture
Replies 2
Last reply 3/1/2019 - 5:10pm

My sister has just been diagnosed with melanoma.  She had a mole looking thing on her abdomen and had it biopsied.  So far that's as far as she has gotten.  She has an apt. with a surgeon next week and I would like to know what to expect.  I am the researcher of the family and would like to help her through this.

Should she be going to a specialty hospital for the surgery?  Get a second opinion? 

Will she be having an oncologist? 

Should she expect that they will they order further scans and tests to make sure it hasn't spread? 

They told her they believe it to be "shallow".  Does that mean it hopefully hasn't spread.

Any assistance you can give would be greatly appreciated. 

 

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cjm22's picture
Replies 6
Last reply 3/2/2019 - 2:43pm

Over the past 4 weeks or so my husband has developed pain in one of his shoulders. He's dislocated both shoulders many times and they're just generally weak and crotchety, but the pain has been slowly increasing over the past 4 weeks and I was just wondering what people's experiences with immunotherapy-related arthritis have been like.

My husband has been on Keytruda since November and Yervoy since about, well, 5 weeks ago (so kind of lines up with the shoulder pain).

As far as we know the most recent PET scan from two weeks ago didn't show activity in his shoulders, but we didn't think to ask. The pain seemed quite mild at first and related to yet another regular funky shoulder thing of his.

But the past few days, if he lifts his arm too high, his shoulder reaches a 5 out of 10 in pain. Sometimes when he is trying to sleep the pain keeps him up if he can't find the right position. If he leaves his arm down, the pain is 0-2 out of 10.

He says it feels like a pulled muscle more than anything. Neither of us have any other experience with arthritis so nothing else to compare it to.

I'm just worried it's another new met.

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NancyGM's picture
Replies 4
Last reply 3/3/2019 - 11:01am
Replies by: NancyGM, Jules, Gene_S

Hi, I rarely post anymore, as I have been stage IV no evidence of disease (NED) for eleven years. I feel humbled as I have lost many to cancer in that time. 

So, now, I have a supraclavicular lymph node that is enlarged, firm, rubbery and moveable. An ultrasound is scheduled in 10 days. Since the mediastinum drains to the right supraclavicular nodes and my last met was a hilar node in mediastinum, I'm a bit concerned. Has anyone had experience with a met to that area? 

Thanks and I wish everyone here the very best of luck dealing with melanoma or supporting a loved one.

NancyGM

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mortalMike's picture
Replies 8
Last reply 3/10/2019 - 6:55pm

Ok, here's the big questions... the Dr says that this med will boost my immune system and hopefully help my body prevent anymore cancer and there might be side effects.  IS IT WORTH TAKING??? All of you out there that have taken this drug, would you do it again??

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RichInLife2's picture
Replies 9
Last reply 3/1/2019 - 7:12pm
Replies by: kst, Lucas, RichInLife2, Bubbles

So it seems that I am among the 0.9% of people who have contracted Type 1 Diabetes Mellitus after receiving Opdivo monotherapy.* My doctors, both my endocrinologist and the two oncologists I have seen are all  at a loss when it comes to helping me manage it. They all tell me that immunotherapy-mediated T1D is even harder to manage than regular old T1D, but beyond that there's just shrugging of shoulders. My oncologists refer my questions to my endocrinologist, but my endocrinologist says she only knows of one other patient who has gotten diabetes as a result of immunotherapy. It's a new area for a lot of people, me included.

Needless to say, I am very frustrated, so I am reaching out to anyone else on this forum who might have also been in that 0.9%. How are you managing it? Do you feel like you have it under control? Have your doctor's been helpful? Please respond here or message me. Mostly, I'm looking to see that I'm not alone, and also that I'm not crazy.

Thanks,

-Rich

http://www.opdivohcp.com/servlet/servlet.FileDownload?file=00Pi000000onjAXEAY

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Scooby123's picture
Replies 5
Last reply 3/1/2019 - 11:22pm
Replies by: SOLE, Scooby123, lkb, mandyjill

Hi all just a update I went today for my scan results which I had 4 weeks ago. So no sleep due to scan anxiety as you all well know. Well still not back so consultant had taken a look at it and said no change as far has he can see but when gets full report will let me know if any issue. Treatment 24 of keydruda tomorrow. So for time being I take it as still Ned.
Scooby xx

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mortalMike's picture
Replies 15
Last reply 2/28/2019 - 11:29pm

Sorry folks been gone a while. I'm starting immunotherepy with Opdivo. Anybody have any thoughts on this drug? At the moment they say I'm cancer free.

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MarkR's picture
Replies 6
Last reply 3/1/2019 - 1:11pm

Went back to see the oncologist today and after discussion with the radiologist they are convinced lung nodules are Melanoma.  I was expecting this so not much of a surprise.

We then discussed treatment options and they decided recommencement of Nivo is the best option at the moment as I had previously responded well.  The plan is to start in a week or 2 and if it isn’t successful we will reintroduce Ipi (the Marsden has had success Re-challenging with the combo) and then there are a few clinical trials available as well.  For any fellow Brits - rechallenge with Nivo is not available under NHS treatment at the moment but I am fortunate to have private medical so will now be under the direct care of Prof Larkin.

I am oddly relieved and happy with this plan as I was worried we were going to be talking about Phase 1 trials.

Mark

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Lucygoose's picture
Replies 3
Last reply 3/1/2019 - 8:41am
Replies by: Lucygoose, Mark_DC, Bubbles

Hi. I am recently diagnosed 3B with an unknown primary. ‘ Normal’ course of action is surgery and an anti PD 1 like nivolomab( optigo). 

 

Ive been offered a clinical trial to do 2 doses of an Anti SEMA4D (pepinmab (sp?) and Yervoy over 6 weeks prior to surgery then 1 year of optivo  

My scans currently show involvement of the one large lymph node.  

 

Anyone had had similar treatment?  Can you share your experience? 

 

Thank you. 

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Anonymous's picture
Replies 4
Last reply 3/3/2019 - 12:13pm
Replies by: Bubbles, Don O'Neal, Hukill

Hi, I am the caregiver for my wonderful wife who has had MS for 20 plus years and now we are Stage IV and starting the treatment. We are not taking any MS Meds because they work against what we are trying to accomplish. I am looking for ways to help her system stay strong and fight off side effects. Does anyone have suggestions that have worked for them or their loved ones?

Thank you in advance, I am a Retired Army Soldier of 23 years, I am not afraid of much, but I am afraid of not doing enough for my wife. 

Thanks!

 

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Hukill's picture
Replies 11
Last reply 3/1/2019 - 11:29am

Got my port removed yesterday, another thing come and gone. 19 months NED and 6 months since my last treatment.

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desmelwife's picture
Replies 3
Last reply 3/1/2019 - 2:02pm

We met with my husbands hand surgeon today to get the path results from the mass they took off his tumor. I was very happy when the surgeon showed us the report that indicated a benign neuroma. My husband, however is very apprehensive.

Turns out that desmoplastic melanoma is often misdiagnosed as a neuroma. Both often involve nerves and look like scar tissue. His pathology report indicates:

skin with fibrosis and scant adipose tissue,
margins of excision are free of carcinoma
 

So now I really don't know what to make of it. When you type in "neuroma" and "melanoma" into good ole google there are several articles about the complexity of differentiating a neuroma from desmoplastic melanoma. Apparently the pathologist was aware that my husband is being treated for melanoma but as DM is such a different creature that does not have the typical characterics to mel I wonder if he was looking for the right thing.

I'm not sure where to go from here. I'm assuming further testing of the specimen is not an option as it has probably been disposed. Wondering if there is more comprehensive results that our oncologist could get if he contacts the pathologist. I'm not sure what the likelihood is of this pathology being incorrect?

I was really hoping that this news would relieve some of my husbands anxiety but unfornutately it just seems to have compounded it.

Love + peace,

Tania

 

Husband diagnosed with Desmoplastic Melanoma 10/18. Started Opdivo at Moffitt clinic 1/19.

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MLD1973's picture
Replies 2
Last reply 2/28/2019 - 12:54pm
Replies by: MLD1973, ed williams

Hello all,

I have a copy of my path report now and just wanted to know if anyone could advise what Regression Present 0.6mm means?

The write up reads -

The juncational component shows feature of an in-situ mealanma of superfical spreading subtype with a large atypical melanocytes howing some suprabasal spread single and in nest.  Beneathe this there is a much chronic inflammation and pigmant incontinence with regression a thickness of 0.6mm.

Breslow depth 0.57mm

Mitotic index 1

Bit confused with the ulceration, I was told not ulcerated but in the report it states not identified.

 

Thank you

Mandy

 

MLD

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Anni's picture
Replies 4
Last reply 2/28/2019 - 1:06pm
Replies by: Anni, Shannon39, skfitz

Hi all, thank you in advance for any input. My sister is 6 months into her treatment on Dabrafenib and Trametinib, she had 4 days off treatment due to an index, however since going back on is experiencing some nasty effects this time, more Severe than before. Approximately 5 hours after taking morning and evening dose, she starts with extreme shaking, followed by vomiting then fever and headache. Has anyone else experience of this. Many thanks 

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