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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adriana cooper's picture
Replies 1
Last reply 6/25/2017 - 2:32pm
Replies by: Bubbles

There was a post here some time ago (I think) about rectal administration of medication, specifically BRAFi for those who can't swallow. I have unsuccessfully searched. If anyone can find or experience with it, would be appreciated. Also with opening Taf. capsules and mixing in yogurt or the like (just started this with Adriana today as a last chance.) she has been taking some of her meds rectally (oxy, dilauded, dex, topomax) but have gotten some oral replacements.  

Adriana update coming. Obviosly not good.

Thanks, Rob

Adriana

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Jubes's picture
Replies 4
Last reply 6/25/2017 - 6:35pm

Hi all

i haven't posted for a while. I've been waiting for my next pet on July 4 (no long weekend here)

meanwhile I have a next door neighbour who also has stage 4. He did 2 years of Pembro, had had two new mets since he was on it and 5 months ago had to have the duodenum surgically removed because the new met was between that and his pancreas. He is  just starting to recover from that op. It was traumatic. He is sbout 70. His last ct was clear but he is very thin and naturally he and his wife are thinking what the next plan would be if another met appears. The original was in his media Steinem but he had also had it in his adrenal gland and had that respected too. He's been off pembro since January and has not had too bad side effects. When h gets them they tend to be bad rashes and vitiligo. 

His doctor says he would not put him back on keytruda since he had new mets while on it, so the next step would be chemo which my friend is not keen on. 

Does anyone have any ideas of what the most effective next step would be if not chemo? I know there is the new treatment that Georgina long presented at asco but apparently that has bad side effects. Does anyone know anything about that?

thanks

 

anne-Louise 

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RitysMom's picture
Replies 5
Last reply 6/25/2017 - 12:31pm

My last post was on 6/8 when we found out Kristine has mets in her spine. The last couple weeks have seemed to fly by while also going in slow motion...it's a very odd feeling. I flew out to her in AL on 6/9, by then she had had a high dose of radiation on one of the tumors in her spine, but still had no functionality from the waist down. Her husband and I spent some time with a home health nurse and learned how to care for her, we then decided to continue with our travel plans.

I had contacted a few drs in the Los Angeles area and Dr. Chang from USC and Dr. Hamid from The Angeles Clinic both wanted to see her. Dr. Hamid was in contact with her dr at MDA, Dr. Tawbi, and said they were both in agreement to get her started on ipi/nivo before we went to Hawaii even tho she's still on 4mg/day of dex.

We flew from Pensacola to LAX on 6/13 and it was a nightmare, Kristine was bruised by the end of the trip after all the transfers by inexperienced employees. We also had a Southwest Airlines pilot who told us that 'life isn't fair' when I complained about yet another indignity that my sweet girl had to endure. I almost got kicked off the plane when I responded to him. Really? We don't know by now that life isn't fair??

After arriving at LAX, we made our way to The Angeles Clinic for an appt with Dr. Hamid. He scheduled her to have her first ipi/nivo treatment that Friday, 6/16. We decided to cancel with Dr. Chang due to how exhausted she was. Dr. Hamid also did a brain MRI and CT of the body. The brain still had numerous brain mets, but she only finished WBRT in 5/24, so we still may see a response to that. Her body had one lesion on the lungs.

Her treatment on 6/16 went smoothly. We flew to Hawaii on 6/20. She has had no improvement in mobility and has deteriorated in some ways. During transfers from wheelchair to car or bed, she sometimes loses consciousness if her head goes back too far. It usually only lasts a few seconds, but yesterday was a long one. My son-in-law called Dr. Hamid and he upped her steroid to 8mg/day. She also seems extremely fatigued, like falling asleep as she's sitting up. And she was vomiting yesterday.

My fear right now is that we're at the end. I'm worried she won't be able to get the 2nd dose of ipi/nivo due to the increase of steroids. 

She's been spending her days here in Hawaii sitting on the back patio watching the waves and embroidering when she's not dozing. She hasn't felt up to going anywhere after the first day. I want to do whatever I can to make this trip enjoyable and memorable for her and the whole family. 

I don't know if I have questions or just need to hear other experiences. I'm just feeling lost.

Cindy 

Mom of the beautiful Kristine

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Sam33's picture
Replies 4
Last reply 6/25/2017 - 6:18pm

Hi everyone,

10 months after learning one of the sentinel lymph nodes contained micro metastasis of 0.03 mm.(no dissection of lymph nodes) and 14 doses of mono Keytruda (minimal side effects), I had malign melanoma metastasis on one lymph node (positive Pet CT scan and positive fine needle biopsy), yesterday.

What should i do? Two options to choose from my oncologist.

1) To add Yervoy to Keytruda and watch around 2 months if it will work on the lymph node (to understand the effectiveness of combination therapy) and remove the lymph node after 2 months.

2) Make a partial lymph node dissection (2 or 3 levels) of neck and adding Yervoy to Keytruda.  

I appreciate your recommendations..

Best,

Sam  

 

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Gene_S's picture
Replies 1
Last reply 6/24/2017 - 1:50pm
Replies by: Anonymous

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Bubbles's picture
Replies 2
Last reply 6/25/2017 - 3:44am

We're here!  The end of my ASCO review for this year.  I thought it fitting, and important, to end on this note:

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/06/asco-2017-friends-in-need-are-friends.html

I wish you all my best.  Until next year....'Thank God and greyhound she's gone!!!!! ' c

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Laurus's picture
Replies 6
Last reply 6/25/2017 - 2:51am

Hi everyone,

I'm 35 years old and I was diagnosed with stage 3b melanoma in November 2016. I live in Japan and melanoma is very rare here. There is very little information about the treatment of melanoma. So I need your help.

I had the surgery to remove the melanoma around the knee and two lymph mets around the groin/pelvis in December 2016.

I had 4 infusions of Opdivo from January to April 2017 to treat one more lymph met around the pelvis. But PET scan showed old one(same size) and new lymph met(11mm) around the pelvis in April, so I had 2 infusions of Yervoy from April to May 2017. And I got side effects, which were severe diarrhea, headache and fever. I've been taking Prednisolone but sometimes I still have headache and fever.

My latest PET scan showed the growing lymph met from 11mm to 19mm in June 2017.

Next week, I'll start a infusion of Keytruda and have a CyberKnife for the growing met. In Japan, the Yervoy/Opdivo combo and Yervoy/Keytruda combo haven't been approved. After some infusions of Keytruda, I'll try some infusions of Yervoy again.

My doctor is a specialist in cancer immunotherapy and he thinks the CyberKnife is the best way and the only option for me. I did some research and I've just found Keytruda might work after failing Yervoy/Opdivo, so there is a ray of hope of the Keytruda treatment in my case as well.

And I've just found there is T-VEC clinical trial here. Currentry I've been searching for other ways.

Are there any other solutions to this situation? I am very interested to know if anyone else has/had a similar experience to me. CyberKnife is the only option in my case?

Thank you,

Takuya

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cammeronwall's picture
Replies 1
Last reply 6/23/2017 - 10:54pm
Replies by: jennunicorn

Hi all! I hope you're feeling good today! We received our news on my scans from yesterday. All clear other than an inconclusive tiny spot on my liver but the surgeon said it's not a tumor. We are scheduled to speak with plastic surgeon on Monday then hopefully set for wide excision sentinel biopsy next Friday. They said I have a 30% it will be found in my nodes... first biopsy on templecwas .61mm (shave), second biopsy ( punch) was 3.15mm...so ... to me 30% sounds low. My husband was very upset. Thoughts? 

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baesill's picture
Replies 4
Last reply 6/24/2017 - 6:42pm
Replies by: Ed Williams, baesill, Patrisa, Anonymous

I have a feeling this is going to be me. I had an X-ray almost five weeks ago where the shadows looked the same or maybe worse and another one yesterday that was the same. However this past week feels like the meds started kicking in. I had first side effects--super high fevers, slightly elevated liver numbers, and more. 

My big scan is next week. I'm already sad.

 

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Jamie1960's picture
Replies 2
Last reply 6/24/2017 - 6:33pm
Replies by: Jamie1960, Ed Williams

Any recent stage 2 (or 3) patients with current experience regarding depigmentation / vitiligo around atypical nevus ?

Have had a 1/4" pink nodule / bump "puff up" in a depigmented area. Bump sloughed a layer and has started to recede. Similar pattern as a prior melanoma with ulceration / regression (came, went, came back). Biopsy scheduled for this coming week.

I've read some encouraging articles that depigmentation may be favorable from an immuno response perspective, but want to get on this in the event of regression and reduced ability to correctly gauge depth (2015 experience).

Thank you for any personal experiences regarding depigmentation prior (important) to beginning immunotherapy.

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Anonymous's picture
Anonymous
Replies 5
Last reply 6/24/2017 - 11:03am
Replies by: Sophietx, Anonymous, stars, Ridingaroundwith27Jennifers

29-year old healthy male. Went to Dermatologist on 6/22/2017 with a lifelong mole (literally on my right thigh my entire life) that had crusted/scabbed over and bled a little bit (I may have been scratching it as I was out in the woods with mosquitoes the day before I noticed the blood). He said it is "more likely than not" melanoma, but would not counsel on what type or depth. Did a punch biopsy and sent to lab. Awaiting Results. Are doctors ever wrong after dermatascope or are they pretty adept at diagnosis w/o biopsy?

 

A few things: there was hair growing in the mole. Is this a good sign? Also, I have a nasty bruise on the inner thigh semi-close to the mole site. Is this dangerous? Thank you for your comments. The waiting game sucks. G-d bless all of you.

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mrsaxde's picture
Replies 3
Last reply 6/24/2017 - 3:27pm

As promised, I wanted to come back to give everybody an update on my experience in the anti-LAG3 (BMS986016) trial at Johns Hopkins.

I had my first infusion on Tuesday (6/20). Pretty uneventful in my case. I received Opdivo first, followed by the experimental medication. Everything went smoothly and I have experienced no side effects so far. The research nurse who is overseeing all of us on the trial there told me that another patient who also started on Tuesday had an entire range of side effects. But I've been just fine. As I told her, I hope outwardly things go smoothly while on the inside it's eating up the cancer. But I won't know for sure until my first scans, which I think come at the end of the first or second 45 day treatment cycle.

My next infusion is on July 5 due to the holiday. I'll update again after that one, or sooner if I start noticing any side effects or anything else noteworthy.

-Bill

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There have been many questions about this type of blood test on this forum and I've been posting about it for years.  Now, there's this:

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/06/asco-2017-circulating-dna-to-measure.html

I'd say it's time to make this a reality, right????  Happy Friday!  Celeste

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Tabbott's picture
Replies 2
Last reply 6/23/2017 - 1:00pm
Replies by: Tabbott, Anonymous

Could someone recommend a Melanoma specialist in Alabama? We live near Mobile, Al but willing to travel for the right specialist. I appreciate any information provided. This is all very new to me and my family. Thank you!

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Hi,

So I'm a stage IV melanoma patient.  I've been on medical leave since 3/24 when I found out I had a brain tumor which was aggressivly growning after taking a break from Ipi/Nivo treatment due to complications.  I had been off treatment for about 5 months but tumors were shrinking and then bam, brain tumor.  They were quite concerned that the tumor would cause motor issues if not removed immediately so I was immediately scheduled for surgery.  I ended up with loss of feeling in my right leg and foot which is coming back slowly but still not all the way back.  Then the MRI 10 days post op showed the tumor growing back.  The original post op MRI was perfect.  Now the drs were really moving quickly.  They wanted to start radiation with nivo immediately.  It was a wednesday so we started on Monday.  Things were going OK until I had severe muscle cramping and spasms in my right foot then leg then abdomin and neck.  Of course this was memorial day weekend.  The drs are confident that this was a seizure due to edema from the radiation.  They put me on Keppra and informed me about a driving ban.  So long story longer... I have to go back to work tomorrow and I can't drive until November.  My husband is going to drive me into the office one day a week and I'm going to work from home the other four days.  Honestly I don't feel ready to go back or to deal with the schedule juggling.  I had a busy day today between watching my two children, going out to lunch with my in-laws, and getting ready for tomorrow and sure enough I had another seizure.  It was smaller and I was able to quickly take some adovan to stop it but I was home alone with my 5 year old and this always makes me nervous.

 This is my second medical leave since my initial diagnosis last year.  Mentally I'm still a bit of a mess and with all the meds I'm not feeling up to leaving the house or being glued to my work computer.  What if I have another seizure?  Does the clock restart on my driving ban?  Just when I think the cancer has taken everything it's going to take then it goes and takes away something else.  I'm still bummed out about losing my hair from the radiation.  I'm still bummed out about gaining twenty pounds from the steroids.  I can't really exercise because of the numb foot.  I used to be a runner.  Now I'm a tentative walker.

How have you handled working and stage IV?  I guess I've just been trying to power through it but lately I feel like it's all catching up to me.

Thanks,

Jennifer

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