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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Lee Parlier's picture
Replies 6
Last reply 8/17/2016 - 5:21pm

I finished my lasy yervoy 10 mg treatment almost 3 weeks ago. I got through the first 3 with minimal side efffects but my luck ran out as I was expecting. colitis, fatigue, nausea and abdominal pain. I began urinating blood which clears up through the day with water consumption. I know this is a rare side effect but was wondering if any other ipi users experienced this during or after the ipi treatments? I see my onco on Wed and will tell him but has anyone else experienced this side effect? 

Lee Parlier

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Anonymous's picture
Anonymous
Replies 7
Last reply 8/16/2016 - 12:53pm
Replies by: Anonymous, Duffy's Mom, Polymath, btcedarr

My doctor told me on June 13/16 that I had melanoma. Stage 1b. I have since had it excised with 1.4cm and 2cm margins on the side and under, respectively. They say it's good news. Now my job is to be sun smart, do regular skin checks and try to figure out how to live my life with melanoma.

I am not a sun worshipper, but do love to be out enjoying activities like gardening, hiking, photography and kiteboarding. The latter is the easiest since I am completely covered in a full wetsuit, booties, gloves and helmet.

Since getting this diagnosis I have been afraid of the sun. I wake up in the morning and my first thought is "what can I wear that is safe and not too hot?"

I am weeks away from retiring. My husband has been patiently waiting for me to do so. We are all set to carry out our long prepared plans to travel in our RV through the southwestern US national parks and open areas. Now I am scared to do what we have worked so long to do. We are looking into having window film put on the RV windows to screen out UVA/UVB rays. Hopefull that will help and give me a safe shade place.

My question is could someone please, please tell me about clothes? I have spent more money on SPF clothing than on clothing in years.  Does everything have to be rated SPF 50+ to protect me? Plus, where can you buy SPF clothes besides on line?  Does anyone know if the Sunguard Laundry additive really works?

There must be a way to do this, but I don't feel at all confident about how. I don't want to make mistakes, due to my ignorance that will cost me my life. Any help will be deeply appreciated.

 

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laulamb's picture
Replies 7
Last reply 8/17/2016 - 3:42pm

Hello,

I am Stage 3a and did not qualify for S1405 (ipi/interferon arm vs pembrolizumab arm) because I only had 1 sentinal lymph node positive and not 2.  Dr. Kirkwood at Hillman Cancer Center recommended interferon as a treatment option.  I declined and got a 2nd opinion with Dr. Schucter in Philadelphia.  She recommended no treatment because my original melanoma was superficial spreading, 1.3 mm, clark III and Mitosis rate = 0-1/mm2.  She said I was low risk.  She asked me how I felt about that and I told her I understood what she was saying but I was looking for a treatment option.  She sent pre-authorization to my insurance company for ipilimumab at 3mg rather than the 10 mg and I had my first treatment two weeks ago.

Questions are:  How will I know if I am a responder to ipilimumab?  And will ipilimumab work on BRAF negative melanomas?

Thanks in advance!

Laura

 

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ecc26's picture
Replies 18
Last reply 8/23/2016 - 1:11am

got back from the oncologist this morning and he confirmed my suspicions that the Ipi/pd-1 combo is not working. now what? there was talk about chemo and hospice and we set another apt for Wed so I could have time to make a decision. I've just finished looking the cliicaltrials.gov listiing and don't see anything for me.

I need help and any suggestions are welcome

-Eva

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Anonymous's picture
Anonymous
Replies 5
Last reply 8/15/2016 - 6:26pm
Replies by: Anonymous, Brice311

Here's the Mole

 

https://imageshack.us/i/pozbaHfZp

 

 

No idea how long it's been there It's under 4mm I think. The problem I have is I can't afford to shell out for s Biopsy without sacrifice so please looking at the mole is it safe to watch and wait? Or because it's new should I remove it?

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Anonymous's picture
Anonymous
Replies 1
Last reply 8/14/2016 - 6:02am
Replies by: stars
JoshF's picture
Replies 32
Last reply 8/19/2016 - 10:31pm

I've been through a lot recently and ended up in ER this afternoon. Just feeling lousy and got nauseous. Long story short, CT scan showed 8mm hypodense lesion in left frontal lobe. I had no idea, not a symptom. Waiting to do MRI now and hopefully act fast with treatment course next week. I'm devastated guys... but based off earlier posts I'll take it day by day. I need to enjoy my wife and kids. Everything happens for a reason. 

My onc emailed me and said gamma or cyber knife. Kyle, Matt...thoughts? I'm bummed because I'm fairly certain this delays trial at MDA. This hurts...but fight on, we can beat this! I know many of you have...share or give advice please.

Josh

Let's work for better treatments....for a cure!!!!

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Jubes's picture
Replies 4
Last reply 8/15/2016 - 1:49am
Replies by: Jubes, landlover, Bubbles

Hi all

i have not posted for a while as (fortunately) not much has changed 

however my 2 yr anniversary of stage 4 diagnosis had just past and I have gone back to work and so happy

if it helps anyone, pembro did the trick for me

i did 9 months worth but had terrible inflammation through my whole body so I couldn't move so I had to stop

as the tumour in my lung had shrunk down from 9 to 3 cm stable the doctors were happy to stop. We tried various drug combos for the ankylosis spondolytis symptoms but nothing worked until I started infliximab (remicade) in April. I have done a course of 4 infusions and have almost weaned off steroids now. Now we will decide if it is worth doing the maintenance doses but either way I am functioning fine for now and so very happy and grateful to all of you Celeste, Ed mat josh and not forgetting dear Artie 

anne-Louise 

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Shaneswife's picture
Replies 7
Last reply 8/14/2016 - 12:47pm

Hello,

I hope you are all winning your battles against melanoma. My husband is having a lymphadenectomy on Monday. It was supposed to be only the superficial nodes but the CT scan yesterday showed that all of the deep nodes are enlarged quite big so they have decided to remove those as well. Has anyone here had their deep nodes affected? How was the surgery and recovery? Did you stay in the hospital over night? He used to be stage 2b but now with this news hes stage 3c.

Thanks

Janis

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Coach337's picture
Replies 1
Last reply 8/13/2016 - 1:10pm
Replies by: jpg

Anyone have a success story?  

Diagnosed in November 2015.  Originated from a mole on my inner thigh/knee area.  Since then:

1. excision

2. sentinel node biopsy (positive)

3. partial inguinal lymphadenectomy (all negative)

4. Yervoy (discontinued after 1 infusion due to uncontrollable side effects)

5. recurrence of tumors in the thigh/knee

6. TIL harvest

7. admission into clinical trial @ MD Anderson

8. several months of T-Vec injections

 

Found out a few days ago after an ultrasound that the tumors are spreading and increasing in size (and returned to the groin), so they are removing me from the clinical trial.  Brain MRI & chest/abdominal/pelvic CT in the next few days, then the "team" will recommend a new course of action.

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LizaC's picture
Replies 14
Last reply 8/15/2016 - 9:47pm

Hi
My partner is on day 4 of her first ipilimumab treatment. The cancer is progressing aggressively and we pray that the IPI starts kicking in. (She responded to brafi keytruda) why not ipi. .

She went back on brafi for a short time 2 months ago and ct scan showed mixed response. Mainly in the liver, since then shes had internal liver radiation, radiation for bone mets.

We decided to go back on brafi but only the dabrafenib not mekinist due to side effects. Cancer has continued to progress. We spoke to Onco last night and asked about going back on braf full dose. He said no point with dabrafenib as she still got resistance, but I feel that the dose wasnt enough.. he suggested continue with Ipilimumab and we could bring in mekinist. Does anyone know much about how these 2 drugs are together?, I can find anything on the net.

Things are getting very desperate now.
Regards
Liza
(Partner to Melissa)

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Anonymous's picture
Anonymous
Replies 1
Last reply 8/14/2016 - 10:07am
Replies by: Tim--MRF

"Brisk lichenoid tissue reaction with dermal melanin pigment incontinence and focal solitary intradermal melanocytic nest.  The histopathologic features are not entirely specific. The main body of the lesion contains a brisk lichenoid tissue reaction with prominent melanin pigment incontinence into the dermis associated with lymphocytic inflammation. The findings are suggestive  of and favor a lichenoid keratosis.  However, I cannot entirely exclude the possibility of an almost fully regressed melanocytic lesion that is no longer discernible in these sections.  Additionally there is a solitary dermal melanocytic nest in the peripheral most aspect of the biopsy present at one lateral tissue edge.  This nest is present at some distance from the lichenoid tissue reaction and felt to be unrelated and incidental. An incidental solitary nest may be represented or perhaps the edge of an intradermal nevus focally sampled within the excisional tissue. Margins are narrowly free of the lichenoid tissue reaction."

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Anonymous's picture
Anonymous
Replies 4
Last reply 8/13/2016 - 4:27pm
Replies by: geriakt, Beehappy, Polymath

Just curious to see what opinions there are out there.  My husband, stage IV, had 8mm tumor removed almost a year ago, unknown primary.  scans have been clear, Thank God.  12 opdivo treatments that ended in April.  The after effects of the opdivo have been worse now than when he was on it.  Theres been no other growths since the one removed, which is good.  Dr's are keeping a very close eye on him since theres nothing really to measure if the Opdivo is working for him or not.  The last 3 months he's seen his Derm and yesterday she noticed a spot she called pre cancerous on his face.  zapped it and said he would have a blister that would go away in a couple of weeks.  Seemed unconcerned.  Well Im now wondering, is this indicative that the Opdivo is not working or am I overthinking?  Something I am definitely prone to doing. 

I wonder if he should mention this to his onc?  He is scheduled for a PET scan next week too.

Thank you everyone.  You've been my rock. 

 

 

Bin

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TerisalyT's picture
Replies 7
Last reply 8/20/2016 - 9:32pm

Hi,

I would like opinions on available Trials for Stage IIIa Melanoma as an adjunctive therapy for patients with high risk of reccurence.  I have already had CLND and am considered NED but due to the size of and traits of my original melanoma I have been told that I should continue treatment.  It was suggested that I get involved in a trial and I am looking into a Vaccine Trial with MHP6. 

Has anyone had personal experience with this trial? 

Do you have recomendations for other trials that are open to Stage IIIa as adjuntive therapy after surgery especially around the Washington DC area, VA, MD?

Will studies that I am in today make it difficult for me to get into studies later should I have a recuurence and progress to Stage IV?

I want to thank you in advance for any information.  I was having a crisis over my decision to have the CLND and everyone was very helpful.

 

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jennunicorn's picture
Replies 10
Last reply 8/17/2016 - 3:39pm

I recall reading that some people have developed pneumonitis while on immunotherapy drugs. I have had these symptoms for the past week: deep cough with not a lot of mucus but not totally dry, burning feeling in lungs (like the feeling after a run or heavy exercise), heavy chest, more fatigue than usual.

Wondering if anyone else who has dealt with pneumonitis can tell me if these symptoms sound familiar, or maybe it's just the crappy air quality of california that's doing it. Had pneumonia as a baby, not sure if that makes me more susceptible or not. Emailed my onc, should hear back from her tomorrow, but wanted to get some input from you guys.

Thanks :)

Jenn - Stage IIIB  (currently doing Ipi [Yervoy] adjuvant treatment)

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