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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Hello brothers & sisters, hope you all are well & fighting the hell outta our common enemy. Today {Nov 22 2017} at 2pm i did my first infusion of Pembrolizumab, 165.5 mg & the other stuff to wash it down haha, like a shot a Whisky with a Beer Back! i am now officially inducted into MRF..Side effects? none really, i do feel buzzed like i did do a shot a whisky but, i dont drink or do drugs anymore {by the grace of God} so, Pembro gave me "freebi" i guess. I feel a bit run down, and that just could be me being drained from the whole "build-up" up untill it was over. All i feel is drained. During infusion, i felt my chest burn about half way through the bag so, my tumors are in both lungs, maybe that was the first time Pembro met my damn tumors? lol..like a street fight, a rumble, ya know? lol..Will see as the weeks go by, im startin to think it will be just fine, "toxicity" would have already happened right? im possitive though, we all have to be...thanks again to all of you & look forward to reading & answering alot of you here MRF...Happy ThanksGivin' to all who celibrate it, i sure do...Mike..

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1Cbras's picture
Replies 1
Last reply 11/22/2017 - 10:09pm
Replies by: Janner

Hi,

On November 13, I had an excisional biopsy of a suspect lesion on the sole of my foot. The pathology report is still outstanding. ( It's going to be an anxious Thanksgiving). Is this a normal wait time for results. Thanks in advance for input. Extremely Anxious.

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Anonymous's picture
Anonymous
Replies 1
Last reply 11/23/2017 - 1:45am
Replies by: MelanomaMike

First, I want to thank everyone on this site. It is a wealth of information and the compassion here is amazing. I posted yesterday about the accuracy of my biopsy results related to the streak in my nail. I got some great advice from Janner and polydad, then I received a call from my doctor today since I spoke with only the nurse yesterday. She said she was reassured that there was no cancer found, when I asked her what the cause of the pigmentation was she said “it is possible that the site of the pigmentation was so small that it was missed on the biopsy. Another option would be to remove part of the nail and repeat the biopsy.” Im flabbergasted, we had discussed removing the nail and on the day of the procedure she convinced me that she was confident we could biopsy only under the nail fold to determine what was causing the pigment. What should I do? I was already questioning the results and then she drops this on me. Is this common? Any thoughts would be appreciated, thank you!

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Anonymous's picture
Anonymous
Replies 3
Last reply 11/22/2017 - 5:55pm
Replies by: Dhva, jennunicorn, Anonymous

Has anyone experienced flushing of the face while being infused with Nivo?  The flushing (deep red) has occurred about halfway through the infusion for the past two (4 treatments so far) treatments. Severe fatigue at the same time and then a sweaty sheen. Is this common?

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TexMelanomex's picture
Replies 1
Last reply 11/22/2017 - 10:03pm
Replies by: CancerSpouse

Hey Warriors!

Sorry for the framented posts, just wanted to log a quick update after round 3 of Pemrbo and PV-10. The flu symptoms hit much faster this time (and I'm hoping that also means they end sooner). Fever and chills the same night, about 6-8 hours after infusion, a little more intense than before, it seemed to take hours to "warm up" even though my skin felt really warm. More fatigue this time around also, I just woke up from a 2 hour nap which is unusual for me (I'm not really a nap person). A few more aches and pains this time so far...but again, nothing unmanageable and certainly nothing that will keep me away from some turkey tomorrow! 

As I said in the original post, I think the results are definitely something to be thankful for. God is good! Each day of life is a gift and Melanoma reminds be to be thankful every single day that I wake up..it also reminds me to fight like hell to rid myself of this disease.

I hope this finds all of you fighting and winning. Stay in the fight!

Tex

Tex

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Lori Ann's picture
Replies 7
Last reply 11/22/2017 - 10:59pm
Replies by: Lori Ann, CHD, Bubbles, adrianc

Hi All.  I was diagnosed in January, 2015 with mucosal melanoma in the nasal passage.  Since then, I have done 6 weeks of radiation therapy, then had 7 surgeries to remove tumors; I've done Yervoy, then Keytruda.  I had one tumor shrink on Keytruda, then no response.  I just finished 3 rounds of chemo (carboplatin and paclitaxel).  The tumors have grown and spread. 

I treat at Rush Univ. Medical Center in Chicago.  We went to Mayo Clinic this summer for a second opinion and they confirmed that everything we have done so far is pretty much standard procedure.  Is Rush a good option?  We live in Northwest Indiana.

We are trying to decide whether to do a Phase 1 study of SEA-CD40 with/without Pembrolizumab (keytruda) or try different chemo drugs (abraxane and Avastin).

Does anyone have any insight?  I am OVERWHELMED.  Thank you.

LORI

 


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Anonymous's picture
Replies 5
Last reply 11/22/2017 - 8:04pm
Replies by: TexMelanomex, Anonymous, Bubbles, sister of patient

My husband is currently undergoing immunotherapy for stage 4 melanoma due to tumors found in his lymph nodes.  My niece just called and mentioned her daughter has a small grade fever and is wondering if they should stay home tomorrow (Thanksgiving) as to not bring germs around my husband.  His Dr. has never said one way or the other rather he should take extra percautions not to get sick.  He works, and is out and about around people all the time.  I left a message for our Dr's nurse but am told there aren't to many people in the office today so it may take them a while to get back to me.  I thought I would ask this group what your experience has been.  He is otherwise healthy, seldom gets sick.   I am worried that if he gets sick that they might want him to skip a treatment until he is better, and we don't want to skip any treatments as he is responding so good to them.

 

Thank you.

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J.bun's picture
Replies 6
Last reply 11/22/2017 - 4:53pm

No matter where you are, or what you do - wishing all who celebrate a 'Happy Thanksgiving.'

My melanoma nightmare began 1 year ago at this time (diagnosis day before; consent forms for treatment day after) - and so I cannot help but reflect.  This year I am thankful for all the advances in medical treatment - and for all of you!

Your posts have provided endless inspiration, answers to lingering questions, and lots of support!  While the battle is different for each of us, I know we are on the same team.

 

 

 

- J.

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Anonymous's picture
Anonymous
Replies 4
Last reply 11/22/2017 - 11:29am
Replies by: Anonymous, Polydad, Janner

I do not have a pathology report yet but received a call from the nurse today to let me know the biopsy of my nail matrix revealed no cancer. She said the report stated that the nail matrix tissue was completely normal. I’ve asked for a copy of the report obviously, but i was expecting some sort of explanation as to what is causing the pigmentation in my nail, this has been such a stress to me and I would like to have closure. Should I just accept that this is benign Melanonychia with no explanation? I’m afraid of a missed diagnosis. I’ve had three dermatologists look at it before the biopsy and all were of the opinion that it was benign. I’ve had it for at least 3 years and there has been no noticeable change (although I haven’t monitored it closely), can I be sure that if it were subungual melanoma it would have been revealed via the biopsy? 

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Anonymous's picture
Anonymous
Replies 4
Last reply 11/21/2017 - 9:24pm
Replies by: Anonymous, jennunicorn

I had my biopsy last Wednesday, my dermatologist told me I should have results by Monday (yesterday) and assured me I would have them before the holiday (Thursday). Still no results, and now I am freaking out thinking that the reason for the delay is because it is not going to be good......I emailed this morning and received a response from the nurse that they were still in process. Can someone please give me some insight, is the delay a bad thing? It's Kaiser, not sure if that makes a difference. My anxiety is so bad and this process has taken so much time, it's been 3 1/2 weeks since my initial appointment, and that was only because I was lucky enough to grab an appointment someone else canceled. 

Any thoughts or insight is appreciated......

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TexMelanomex's picture
Replies 2
Last reply 11/22/2017 - 10:41am
Replies by: MovingOn, TexMelanomex

Hey Warriors!

Back at MDA today for round 3. Primary tumor meassurement is mostly unchanged in length and width since last round, however it is less deep than it was 3 weeks ago. There also appears to be a "breakoff" lesion next to the original so it's going to get its own dose of PV10 today. Overall, I will call the measurements a "draw", not a win or loss...it does serve to piss me off a little and therefore renew my motivation to fight harder. Not looking forward to the PV10 today, 3 full syringes are pretty rough and I could be looking at 4 today and then bring on the Pembro. 

I'll do my usual check in after all the injections and infustions later today. Hope you are all out there fighting the good fight and taking it to the enemy at every turn. Shout out to Melanoma Mike since he starts his Pembro tomorrow, I hope you tolerate it even better than I do brother!

If any of my MDA Warrior brothers or sisters are here today, you can identify me by the patch on my profile. I have the Texas Punisher patch on the bag I'm carrying.

 

Tex

 

Tex

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Anonymous's picture
Replies 1
Last reply 11/21/2017 - 8:31am
Replies by: Abbygx2589

Partner had stage II melanoma removed 3 years ago and has received CT scans and blood work every 4-6 months since then. He has several lung nodules but they've been stable this whole time. Now one of the lung nodules has increased in size fairly significantly since his last scan 6 months ago. Have any of you heard of something like this before?

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Jubes's picture
Replies 2
Last reply 11/21/2017 - 1:58pm
Replies by: Jubes, cancersnewnormal

Hi all

 

i haven’t posted for a while but I’m back at work and my last 2 pet scans were clear! They show inflammation consistent with my ankylosis spondalytis in my spine hips and right shoulder. I see my rheumatologist regularly and am on a mix of sulphazalasine plaquenil and anti inflammatories  but at the moment I have a lot of pain in my right shoulder and bicep. It’s been like that for five months. I have had 2 cortisone shots which have helped me get to work but the pain keeps coming back. At this point the rheumatologist has offered me either surgery or infliximab. Down side of surgery is it takes 6 months to heal. Also not sure if the surgery would just drain out the fluid ( there’s lots) or also fix the torn tendon. Down side of infliximab is possible side effects of MS ! Or melanoma. I did infliximab for 6 months last year and it worked very well. Then my melanoma in lung grew and we had to do a left lower lobe resection. The oncologist is not convinced that there’s a connection but the rheumatologist is not so sure as we don’t have much evidence to go on. Also he says if it’s even only a 1% chance of progression due to infliximab I might well be in the 1% as it’s happened before. 

Are there any stats of recurrence after infliximab that might help me with the decision?

btw the rheumatologist thinks if infliximab is not a problem then overall it will be better for me if I live longer, as if I keep going with all this inflammation I might have very serious joint problems as I get older if I don’t take it

 

thanks for listening and much love and respect to you all

 

anne-Louise 

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Anonymous's picture
Anonymous
Replies 3
Last reply 11/22/2017 - 1:03pm
Replies by: Anonymous, Richard_K, Prd10

Question:  once you have been on taf/mek, can zel still be an option if needed?

thanks in advance. 

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