MPIP: Melanoma Patients Information Page

Register Login Help

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.

Expand/ Collapse Topic
 
Replies By
View Topic
MelMel's picture
Replies 2
Last reply 1/23/2020 - 9:27am
Replies by: Bubbles

Nifuroxazide is an oral nitrofuran antibiotic, patented since 1966 and used to treat colitis and diarrhoea in humans and non-humans.

The following three links may be of interest

1. https://www.ncbi.nlm.nih.gov/m/pubmed/30293938/?i=2&from=/31260646/related

ALDH1 Bio-activates Nifuroxazide to Eradicate ALDHHigh Melanoma-Initiating Cells.
Sarvi S, et al. Cell Chem Biol. 2018.

Abstract
5-Nitrofurans are antibiotic pro-drugs that have potential as cancer therapeutics. Here, we show that 5-nitrofurans can be bio-activated by aldehyde dehydrogenase (ALDH) 1A1/1A3 enzymes that are highly expressed in a subpopulation of cancer-initiating (stem) cells. We discover that the 5-nitrofuran, nifuroxazide, is selective for bio-activation by ALDH1 isoforms over ALDH2, whereby it both oxidizes ALDH1 and is converted to cytotoxic metabolites in a two-hit pro-drug mechanism. We show that ALDH1High melanoma cells are sensitive to nifuroxazide, while ALDH1A3 loss-of-function mutations confer drug resistance. In tumors, nifuroxazide targets ALDH1High melanoma subpopulations with the subsequent loss of melanoma-initiating cell potential. BRAF and MEK inhibitor therapy increases ALDH1 expression in patient melanomas, and effectively combines with nifuroxazide in melanoma cell models. The selective eradication of ALDH1High cells by nifuroxazide-ALDH1 activation goes beyond current strategies based on inhibiting ALDH1 and provides a rational basis for the nifuroxazide mechanism of action in cancer.

2. https://www.nature.com/articles/srep20253
Nifuroxazide exerts potent anti-tumor and anti-
metastasis activity in melanoma

3. https://www.medicalnewstoday.com/articles/323260.php
Existing antibiotic could help treat melanoma

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 0

Good morning,

My father was diagnosed in August 2017 w/stage 4 metastatic melenoma and was initially on Ippi/Nivo and that worked well initially but then started to impact his liver. Since then they have stopped the combo and he was having Tvec injections and we did not see any positive results w/that. The Dr. is now looking to put him on Axitinib 5mg and I'd like to see if anyone has any information on this medication regarding what to expect. Thx.

Login or register to post replies.

Marburg's picture
Replies 9
Last reply 1/22/2020 - 2:51pm
Replies by: Bubbles, ed williams, tkoss, Anonymous, TarlieT, JudiAU

Hello, new poster, old visitor , original diagnosis State 1 - to 3 July 2005. Stage IV after biopsy of lump under skin in left thigh (same location exactly in wide local excision scar 14 years earlier). Wondering with nerves what to expect as my treatment ipi/novo (sp?) Round 1 is scheduled for beginning of February. And preparation suggestions for the side effects or pre-infusion hints. I really have not even got a conversation with my treating oncologist as I am travelling for treatment and only saw him once prior to scans. PET revealed 2 lesions of 2cm in liver observed (booo !!) Yeah I am still in the phase of 'I'll come out swinging in round 1, but honestly don't want to let my husband know I am scared to .....well, you guys know the rest. Just knowing maybe someone will answer is my hope for today. Small steps, big hope. All the best to everyone. I've seen this board grow for 15 years and life is GOOD.

Mom of 2

Login or register to post replies.

Hi all - I am currently receiving ipi/nivo for unresectable Stage IV, but just found out from mutational analysis that my tumors are ALK-positive. Apparently there is an ongoing basket trial to allow ALK-positive patients with a range of types of cancer to receive alectinib (Alecensa), a targeted therapy that's historically been used for ALK-positive non-small cell lung cancer (NSCLC) patients. Here's the clinical trial page--it's Phase IIa, they're recruiting through 9/30/2020, and it's not just alectinib that they're testing.

From what I've read, alectinib has been pretty effective in the NSCLC patients who've received it, and the side effect profile isn't horrible. But I guess it's not clear how this will translate to other types of cancer. Is there anyone else who has experience with this trial? I'm curious to hear personal experiences, particularly after having been hit hard by the side effects of ipi/nivo...

Warm wishes to all,
Tarlie

Stage IV since May 2019 after four years Stage III NED. Receiving ipi/nivo at MSKCC with Jedd Wolchok. Age 28. Blog: astudyinblu.wordpress.com

Login or register to post replies.

Anonymous's picture
Replies 9
Last reply 1/23/2020 - 4:33pm
Replies by: daniellekha, sj, tkoss, Anonymous, JudiAU

I had a melanoma removed 10 years ago and was referred to a dermatologist. Who I was meant to see every 3 months, every 6 months then yearly. I was ignorant after having a mole removed that wasn’t cancerous through the dermatologist I decided to see my GP who found initial melanoma.
If you have had past melanoma removed did you see a dermatologist or GP.
I have recently decided to go back to dermatologist and am going to get 4 moles removed. I am terrified as I am 10 weeks pregnant. And don’t want to have to terminate to receive treatment. How ever if that is the out come will have to do what I have to do. My anxiety is in overdrive. What if the dermatologist has picked up on something that the GP has missed.

Login or register to post replies.

donna conn's picture
Replies 7
Last reply 1/21/2020 - 5:45pm

I started on tafinlar/mekinist and initially did well except for some nausea and vomiting, then about 2 weeks into it started in with the chills and fever. I stopped the drug for a few days, but had a return of chills and fever so I had to stop it again. When I took the next dose 2 hours after ingesting it I had the most severe headache which was unbearable sending me to the ER for pain relief. I took another break from the meds and when I started them up again the same thing happened with a headache sending me back to the ER. After another break , I resumed the medication at a half dose with my sister, who is a nurse helping me deal with the side effects. She had me take two extra strength excedrine one hour before the 75 mg tafinlar and when I took the half dose, I didn’t get a headache, but started having extreme pains in my neck, shoulders, arms, and legs. I took Tylenol 500mg, ibuprofens 800mg, and finally 5 mg of oxycodone without any relief. I ended up in the ER again where they gave me 1mg dilaudid but that didn’t take the pain away, it just made it a little more bearable, so they finally gave me 1 mg of dilaudid and 1 mg of Ativan the next thing I remember was waking up the next day at noon. Has anyone had any similar experiences? If so how can I deal with taking this medicine and not having to go to the ER after taking it?

Donna

Login or register to post replies.

lkb's picture
Replies 3
Last reply 1/18/2020 - 9:07pm
Replies by: lkb, Anonymous, Edwin

I'm in treatment for head and neck melanoma and have had good results from gamma knife (brain) and intralesional therapy (scalp and neck and Pembro (systemic). However, I just found a dark bump inside my mouth--Friday night of a holiday weekend, of course. Anyone have experience with growths in the mouth? Admittedly, frightened.

October 2017 primary scalp WLE; SLNB; partial neck dissection (PND). July 2018 recurrence in neck. August 2018 second PND. September 2018 started Nivo. December 2018 SRS for brain met January 2019 Pisces trial IL-12 + Pembro. .

 

Login or register to post replies.

sks2019's picture
Replies 2
Last reply 1/21/2020 - 12:07pm
Replies by: sister of patient, lkb

My mom is a stage 4 pateient who has failed ipi/nivo and currenlty seeking trials. I am also looking into alternatives to see how she can benefit in any possible way in addition to the traditional medicines.

I have been reading about RSO and wanted to check if anyone has used RSO here and would like to share some information on it. You can also send me an email sharma_ajita@yahoo.com incase you dont wish to post here .

I dont believe that naturopathy can fight this disease but anything that could be added to help is what I am seeking so RSO users please share your experiences.

Login or register to post replies.

sj's picture
Replies 9
Last reply 1/20/2020 - 8:31pm
Replies by: lkb, JudiAU, sj, Bubbles, EllieS, ourvan

Initial post: https://melanoma.org/legacy/find-support/patient-community/mpip-melanoma...

My Wide Local Excision is scheduled for tomorrow morning. Yesterday I had a CT of my head, neck and abdomen. Last March an unrelated CT showed a tiny lesion too small to classify on my liver, and thankfully that hasn't changed at all so it's unrelated to the melanoma and they suspect I was born with it. In fact all of my organs in my abdomen look fine, which is huge news for me. I believe this effectively rules out stage 4 at this time. I am tempted to have the lesion on my liver removed regardless, but I'll leave that for another day.

The CT showed no masses on my lymph nodes as well, and I had the Lymphoscintigraphy Injections today so they've highlighted the sentinel node and a couple of others in close proximity.

So tomorrow I'll undergo surgery, and hopefully he is able to remove it all and get clean/clear margins. Hopefully the cells haven't started to move to the lymph nodes as well. No masses in that area is huge for me, but he'll take the sentinel one for biopsy just to be safe, and possible a couple more if he detects any cells in that region.

This has been a horrible couple of weeks obviously, and I have some relief now as I was very worried about that lesion on my liver and was thinking the worst.

Hopefully tomorrow goes smoothly. Thank you all for answering my many questions. You've all been wonderful to me.

Login or register to post replies.

sks2019's picture
Replies 9
Last reply 1/18/2020 - 9:12am

Hi , posting for my mom. She was diagnosed with vaginal melanoma in oct 2018 , since then she has tried nivo alone for 6 months and then 3 doses of ipi/nivo . It seems her tumor on the liver has grown from 1 cm to 7 cm since starting ipi/nivo.
Oncologist today suggested getting into a trial at UCSF
The medicine is commonly called as xencor. I am sure people here have not heard about it. But please let me know if you have . I am not very optimistic about this trial as this is phase 1.

He mentioned surgery is very hard due to the size of her tumor and might not even be feasible, he is going to check with liver surgeons and if it is possible then we will go for surgery followed by his xencor trial

He is not suggesting radiation becoz he feels due to the size and location of the tumor radiation is not possible

The tumor is in the middle of the liver and 7 cm

I am surprised he is basically telling me there are no options left beside the phase 1 Trial ?

Please please pour in ideas on what you did for liver metastasis

Login or register to post replies.

sj's picture
Replies 13
Last reply 1/17/2020 - 5:38pm

I've seen varying accounts that say it's only bad for 3 seconds or so per injection, to other people saying the burning pain lasts 30+ seconds.

Just wondering about people's experience on here.

Login or register to post replies.

sks2019's picture
Replies 7
Last reply 1/15/2020 - 7:00pm
Replies by: sks2019, JudiAU, Summer S., Edwin

Seeking advice from the folks who have failed ipi/nivo . My mom originally diagnosed with vaginal melanoma failed nivo in August as disease progressed to liver with two Mets in liver 1 cm. Started ipi/nivo in September and had to stop after her third infusion due to GI side effects
Scan today revealed the tumor grown to 7 cm and multiple new lesions in liver. I have an appointment tomorrow to discuss the plan going forward.

Can anyone suggest what are the options after failed ipi/nivo ?
FYI she had all the side effects but still it failed.
She is being treated at Ucsf by dr.Adil Daud

Still thinking how do I talk to mom about this. Can’t see her breaking down.

Login or register to post replies.

kristenh730's picture
Replies 9
Last reply 1/19/2020 - 9:39am
Replies by: tkoss, JudiAU, mandyjill, LRS88, kristenh730, ourvan, Anonymous

Hey everyone!

I am 31, and I was just diagnosed with melanoma. It is .7 mm. I was told by my dermatologist that I was going to have a wide excision and possibly a sentinel node biopsy/ removal. I don't meet with my surgical oncologist until next Friday, and for this planner, that is a long time away! Does anyone have any feedback about how long recovery would take for just the wide excision versus both? I am trying to plan time off of work and wanted to know how much I would need.

Thanks in advance!
Kristen

Kristen Hehn

Login or register to post replies.

Juan Arias's picture
Replies 11
Last reply 1/17/2020 - 2:13pm

My name is Juan, I'm 44, from Chile (South America).
In 2015 I was diagnosed with skin cancer (2,2 mm thickness melanoma). After surgery I had a successful recovery.... However the last 31th December was confirmed that Cancer is back in all my body, with metastasis in liver, lungs, bones, head, even heart....V600 BRAF mutation was also confirmed. I began the same day a treatment with drugs, Tafinlar and Mekinist (Novartis lab), with unbeliavable results...I was almost dead when I get into the hospital and 3 days after was at home with my family.
The main problem to me are the side effects. In the beginning (3rd to 5th days) diarrhea was so intense, so I had a loss of weigth important. But then fever arrives..... 39°C to 40°C (102 to 104°F), chills, uncontrolable tremors, low blood pressure (90/50 mmHg), the emergency team tought it was an infection, so again to the hospital.... blood test, urine test, culture..... But nothing. It seems side effects.
Fever is under control with 1gram paracetamol today, but my main conclusion is I was dehydrated when the fever starts because previous diahrea, this created the perfect storm. Lesson learned: You need drink TOO much water during both diahrrea and fever events.
I would like to know how you are making for managment the side effects of therapy, and of course if you have other "lesson learned" please share with us.
Thank you in advance.

Juan Arias

Login or register to post replies.

Summer S.'s picture
Replies 10
Last reply 1/24/2020 - 10:00am

Hi everybody,

Hope we are all getting healthier and happier everyday!

Stage IV still did not get lucky with either immunotherapy or targeted therapy, we are trying old school chemo for now. Spirits are up though and we are really hoping for the best!

So we have been trying to enroll in clinical trials for a while but without any luck, people basically do not respond to emails and we live in Africa, I almost have given up, if it was not for our two good fellows here Ed and Jackie who halve encouraged me to dig deeper

So, does anybody have a tried method or a direct contact that could help?
We are looking across Europe and US as well

Lemme know!
Love
S.

Login or register to post replies.

Pages