CURE OM Forum


Welcome to the CURE OM Forum, a community bulletin board designed to address the needs of the ocular melanoma community – patients and caregivers alike. Here you’ll find answers to questions about OM diagnosis and treatment, and support from people from all stages, levels of treatment and from all over the world.

Questions about what to post? Visit our forum posting policies for guidelines.

Expand/ Collapse Topic
 
Replies By
View Topic

I've been out of the loop for the past year while dealing with the mets to my liver and was wondering what the new latest greatest trials are out there?

I've completed 3 Opdivo + Yervoy treatments and about 6 months of Opdivo only. My tumors are stable now for about 18 months, but I am worried they will either continue to spread or start growing again. I cannot get them removed as they are small and scattered.

Any new news would be very helpful! THANK YOU!

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 0

Hi All, I just want to ask if anyone ever tried using medical cannabis as an alternative meds? I have read many articles about medical marijuana and how it can help you in terms of chronic pain, glaucoma, eating disorder/anorexia, anxiety disorders and panic attacks, inflammation, even cancer and a lot more. Like this article about a marijuana strain hash plant. Cbd and thc are also new to me and I don't even smoke. If this is true I cant find any solid conclusive evidence that speaks to its efficacy. Any personal experience or testimonial would be highly appreciated. Thanks

Liang Chen

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 0

Would anyone consider this an conjunctival tumor???? Waiting for results from the biopsy

https://goo.gl/photos/ohPqyXwSWivV9ofn7

Jenn

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 0

Would anyone consider this an conjunctival tumor???? Waiting for results from the biopsy

https://goo.gl/photos/ohPqyXwSWivV9ofn7

Jenn

Login or register to post replies.

betsyl's picture
Replies 1
Last reply 5/26/2017 - 10:55pm
Replies by: hopeFlorida

Hi all,

My husband's skin has started to itch now that the weather is getting warm. I've heard that moisturizer is good to use, but he doesn't like the greasy feel of lotions. Would it make sense to use antihistamines? Is the itchiness caused by a histamine response? He doesn't want to ask the doctor questions like this, doesn't want to be a bother..

Lately he's really feeling the fatigue. Plus he has some knee pain, which he's never had before. His mood is pretty down, which is understandable. Today he was morose. Maybe he should get counseling..I don't know.

He wants to go to his appointments by himself without me. Is that a common thing?  Maybe I'm getting on his nerves. (shrug)

The good news is he gets his fourth infusion tomorrow, which means he's almost half-way done with the 6-month course. The even better news is that the visible subcutaneous lump has melted away. 

He should be getting a scan soon. We'll find out tomorrow when. Keeping fingers crossed for good news.

We've been married for almost 17 years. I'm not willing to settle for less than 30. Ha ha.

-Betsy

 

 

 

Login or register to post replies.

Dear all,
I have the following question to community:
I have melanoma (Braf mutation) and now I have metastasis in spine L2.
Doctor has advised to make Stereotactic Body Radiation Therapy (SBRT) in L2
with the following dosage : 5 fractions with 4 Gray per fraction (20 total)
From my searching via internet it’s not enough in case of melanoma, I mean dose per fraction and total dose.
Did someone have that experience with radiotherapy in spine?
Pls advice

Login or register to post replies.

Recently diagnosed with melonoma. It has been removed however tumor was 4.7 mm mitosis was 7 not ulcerated and margin cleared by 0.3 mm. Seen oncologist and had fine needle as I have swollen node and shows cancer from pathology report. Nov 4th under going wide excision to clean up neck get more margin and SLN biospy removing all nodes on left side of neck where original melonoma detected. Well I am scared. My name is Lisa 3o have a family and now after this I have just stopped everything. Depressed anxiety you name it. My biggest fear is dying funny I work as a personal support worker.

They haven't given me a stage however I have been reading and if it's in nodes I am stage 3 I guess I'm confused some say two some say three from what I read. So far organs are OK no spread at this time.

Any advice would be greatly appreciated

Thank you

Lisa McCann

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 1
Last reply 1/25/2017 - 7:10am
Replies by: SueGeorge

All-in-One CRISPR/Cas9 KO Kit is a highly effective and accurate gene editing kit which is based on the latest artificial endonuclease CRISPR/Cas9. All-in-One CRISPR/Cas9 KO Kit is applicable to modify genes in almost all kinds of mammalian cells.

Login or register to post replies.

For many proteins and peptides, disulfide bridges are prerequisite for their proper biological function. Many commercialized proteins are cross-linked by disulfide bridges that increase their resistance to destructive effects of extreme environment used in industrial processes or protect protein-based therapeutics from rapid proteolytic degradation. Manufacturing of these products must take into account oxidative refolding—a formation of native disulfide bonds by specific pairs of cysteines located throughout a sequence of linear protein di-sulfide bond localization analysis.

Login or register to post replies.

Nitric oxide (NO) is produced by three isoforms of nitric oxide synthase (NOS) and is a chemical messenger that reacts with free cysteine residues to form protein s-nitrosylation analysis (SNOs). S-nitrosylation is a critical PTM used by cells to stabilize proteins, regulate gene expression and provide NO donors, and the generation, localization, activation and catabolism of SNOs are tightly regulated.

Login or register to post replies.

Anonymous's picture
Replies 2
Last reply 1/25/2017 - 7:03am
Replies by: SueGeorge, DawnG

I am wondering if htere is anyone on this site that has had the immunotherapy comibnation of yervoy and opdivo for ocular melanoma.  I have read posts of skin melanoma with mets who had the treatment, but I am wondering about the eye since I willbe starting that immunotherapy combo soon.

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 0

I was diagnosed with a medium choidal melanoma in 2001 and had plaque radiation at the beginning of 2002.  From that point forward, the tumor shrunk slowly (which the doctor said was good) and had remained shrunk all these years.  I had appointments for check ups every 6 months.  My liver functions tests were good.  I had a chest xpray and ultrssound of the liver 2 weeks ago.  The chest x-ray was fine.  The liver ultrssound showed something vague and ill-defined on the left lobe of the liver.  So, I had an MRi where they did two different kinds of contrasts (first one was blurry).  That showed some very small spots on the left lobe of the liver.  My doctor spoke with the radiologist before my appt with her, and she said he was unable to determine what they were.  So, now I am havinga pet scan.  I am scared and concened.  I was shocked at myeye cancer doctor's appointment toeven hear there was anything as I feel great and have no symptoms of anyting, other than a nervous sstomach which is something I alwasy get if upset.  Has anyone had anything similar?  HELP!

Login or register to post replies.

interallymotivated's picture
Replies 1
Last reply 5/7/2016 - 12:56pm
Replies by: farmboy wannabe

Hi there,

My question to you is: how did you find out you had OM? Did you notice a spot on your eye, or was it a different experience?

For the record, I am not diagnosed with anything. I am hoping this stays that way. However, 6 months or so ago I noticed there was a spot on the white of my left eye. Never thought much of it at the time. What got me to start thinking was that for months and months now I have been having recurring dreams telling me I have cancer. The dreams have been becoming more direct. 3 dreams involving melanoma. A dream voice saying specifically to me "You have a melanoma."

 

This started making me wonder if this could actually be possibility. So I looked over my moles and such, and scheduled my routine derm appt, which was a month overdue (I am 31, and have to have derm appts every 4 months due to multiple precancerous moles, living in south Florida, and being very fair skinned). I didn't notice any unusual moles, but I did notice that black spot on my eye again. It's the size of a mechanical pencil head. Called my doc, and they completed my authorization to see an eye doctor within an hour. Appts in 2 days. I am really nervous... Hopefully this is just nothing.

 

Thanks for reading. Anyone willing to share their diagnosis experiences?

 

Login or register to post replies.

Mimi1974's picture
Replies 3
Last reply 5/16/2016 - 5:17pm
Replies by: Mimi1974

Hi,

 

I´ve just been diagnosed with chroroidal melanoma one week ago.

It has had a very hard impact on me during the first two days, I just felt like I´m gonna die right away.

I actually went to the doc

For every one, every day could be the last day - just make the best of every single minute :D

´

Login or register to post replies.

srbf's picture
Replies 1
Last reply 8/27/2016 - 2:41am
Replies by: JoyJ

My mom is scheduled to begin (in 2 weeks) a clinical trial with Ipi (Yervoy)/Nivo (Opdivo) injections... from what i understand, it's pretty toxic and the side effects are quite severe.  Can anyone attest to this?  Are the side effects as severe as it seems?

Also, just wondering if anyone has tried Adoptive T-cell Therapy instead of Ipi/Nivo?  T-cell therapy seems less toxic and more specific to the individual, given that it uses the person's DNA.  Does it take too long to get this type of treatment set up?  (My mom is Stage IV metastatic ocular melanoma in her lungs).

Alternatively, are IL treatments equally as toxic as Ipi/Nivo?  are those treatments as effective?

Thanks,

Shelley

Login or register to post replies.

Pages