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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Aundrea's picture
Replies 11
Last reply 3/11/2015 - 1:11pm

Hi guys and gals, Im stopping by once again, second time in 2 years.  Last yr my husband had a wide excision for melanoma, reached clear margins, oncologist said all looked good and released him.  Just follow up with Derm and primary to check nodes.  Well low and behold I once again caught his melanoma, you would of thought the dr would have huh!  I noticed his node swollen and made a appt.  After numerous test, surgery 2 weeks ago for a modified radical neck desection of around 30 nodes and partial parotidectomy, 5 nodes were postive.  The oncologist said we reached clear margins, yay but what about last time.  It has taken me lots of reserch to finally understand cancer has misroscopic cells that cannot be seen by the naked eye or test.  All his test come back clear, MRI of brain, 3 ct scans, pet scan.... All clear except the nodes that have now been removed.  So the paln is 6-7 weeks of radiation and then the dr said he had 2 options.  Clinical trial MEK162 or Interferon.  Need opinions and advice.  He does road construction and we are in our 30s with 2 kids.  Spent our only savings on drs the last 3 months and to hear the dr say he probably will have a hard time working due to being sick from treatment kinda deppresed us both.  Have you done MEK162 trial?  What were side effects?  How was it administered and did you go home or stay in the hospitla the whole trial?  Does insurance cover a clinical trial or is it pd for my the trial?  What about radiation, what are the side effects?  I have read about Interferon but would love to hear others experiance as well.  Any advice on financial or disibility to help me provide for my family.  We just bought our first house 2 years ago and bought a new car 2 weeks before we found out about his cancer returning. This is all overwhelming.  Thanks for any advise!!  By the way, we are from Texas. 

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Replies by: Bubbles, JerryfromFauq

Vitals

Key clinical point: Patients with advanced melanoma and mutations in the NRAS gene had better responses to immunotherapy than did those without NRAS mutations.

Major finding: Of the patients with mutated NRAS, 28% had complete or partial responses to first-line immunotherapy, compared with 16% of patients without NRAS mutations.

Data source: The retrospective study evaluated medical records from 229 patients with advanced melanoma who were treated with ipilimumab, IL-2, or anti-PD-1/PD-L1.

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http://www.oncologypractice.com/home/article/nras-mutations-predict-immu...

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Patients with advanced melanoma who were treated with immunotherapy responded better if they harbored mutations in the NRAS gene, according to a study published March 3 in Cancer Immunology Research.

Out of 229 cases retrospectively analyzed, 26% had mutations in NRASG12/G13/Q61, 23% had BRAFV600, and 51% were wild type for NRAS and BRAF. Patients received first-line therapy with high-dose IL-2 (25%), ipilimumab (62%), or anti-PD-1/PD-L1 (12%), investigators reported (Cancer Immunol. Res. 2015 March 3).

 

I'm me, not a statistic. Praying to not be one for years yet.

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Banders's picture
Replies 5
Last reply 3/11/2015 - 10:39am

To put it bluntly my question is should adoptive cell therapy only be considered when all other options have been exhausted?   From my recent experience this seems to the dominant medical thinking.

A little background.

 I've been lurking on this message board since my diagnosis of stage 4 metastatic melanoma in October 2014 that followed 5-6 mothns of chest and back pain that included 4 boken ribs. The cancer is in every bone above my knees and I have 5-6 large tumors throughout my body, with especially large one's in my ribs and spine.  

Did the 4 treatment regiment of Yervoy and two 10 dose rounds of radiation from October to December.   Also took ten daily shots of leukine with last Yervoy treatment.   Immediatley my level of pain went down and things were pretty good until about a month ago.  

I've started having back and chest the last 4-5 weeks and there is blood in my spit.  Pet scan about a month ago showed all tumors stable except one lesion that is where the pain is.  

At some point I read about adotpive cell therapy on this website and have tried to read as much about as I can in medical journal articles using google scholar.  As I understand it there are good response rates and even complete recovery rates that vary from 10 to 40 percent.  

Last week I went to a melanoma specialist and his opinion matched my doctor at the regional cancer center I go to.  They say there are just as good results without having to spend weeks in the hospital.

The specialist wants me to go on the combo of dabrafenib and trametinib.  See how long that woks and then go on anti-PD 1 when the tumors start growing again.   

 

I guess I just want to be more aggresive than the doctors.  So back to my question.  Should I only consider adotpive cell once all else has failed--which I think is going to happen anyway.  

 

Sorry for the length and I greatly appreciate any comments or opinions.

 

 

 

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yazziemac's picture
Replies 2
Last reply 3/10/2015 - 12:18pm

Good morning

My husband, Pete, has his first infusion of Yervoy tomorrow for multiple mets in liver, spine, bone, muscle. His back has become quite stiff and sore from the tumours that are in the muscle and bone there.  We are going to talk with our oncologist tomorrow about radiation options, but I wanted to find out what others' experiences have been in this community.  What is the typical process of getting radiation for pain control at the same time as getting Yervoy?

Thanks in advance,

Yasmin

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Teochasse's picture
Replies 3
Last reply 3/10/2015 - 11:11am
Replies by: SABKLYN, Teochasse, Janner

I would appreciate any feedback on top notch cancer medical centers  in the state of Nevada.Do you have to travel out of state for your medical care and where, LA?I am very happy with my medical care here  in New England but we are done with enduring  its brutal winters so we are looking to relocate to Las Vegas  starting next winter. I am willing to travel once a year for my routine check ups with my current gynecological oncologist here in Portland Maine as she is a top notch specialist  whom I credit with  basically saving my life.Any input  on Nevada's medical facilities would be welcome.

Teodora Chasse

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ashlee12's picture
Replies 4
Last reply 3/10/2015 - 10:27am
Replies by: Anonymous, Ed Williams, Linny

I'm not looking for answered really in this post. I'm looking for people who know what I've been through. 

My family isbt very understanding just kinda a dont worry about it your fine.. Same with my fiancé...

 

well what made me upset was tonight I did my skin check and I asked my fiancé to help look at my back and back of my legs because I can't see back there. He got allad when I asked him and just said oh your fine...

 

 

now I know i obesses.. But I just want some understanding .. I'm alittle on edge after thinking some miles are weird and kinda going into a panic but I huess I just wanna know how to cope.. I'm afraid of new melanomas and I just want to live life but I feel like I'm held back and stuck.

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vince1962's picture
Replies 10
Last reply 3/9/2015 - 9:29pm

Final Diagnosis [Microsopic]:  Right axilla, biopsy- A.Metastatic melignant neoplasm involving lymph node, immunohistochemically consistent with metastatic melanoma. An infiltrate of malignant cells that show strong positivity for S100 and SOX-10 is identified.  Can someone please help me with this as far as what stage this might be! I have no clue what all this means.

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Anonymous's picture
Replies 6
Last reply 3/9/2015 - 8:43pm
Replies by: DZnDef, Anonymous, joelcairo, tschmith, Squash

Hi everyone,

A parent of mine was recently diagnosed with metastatic melanoma in Oct of 2014. BRAF positive & currently on Taf/Mek combo, doing very well on both. Tumors have decreased by 20-60% in the brain, liver, lung & adrenal glands over the course of 3.5 months. Super grateful! 

As a family, besides finding a good team of doctors (which we were fortunate to get at Hopkins), we are trying to find other ways to help out. Determined to attack this monster from all possible angles! One thing we've heard many recommend is to change nutrition. We eat very healthy but are def interested in tailoring diet towards a strong, melanoma fighting super-body! 

Along with the taf/mek drugs, and steroids for edema & keppra as preventative for seizures, been giving:

*daily multivitamin

*echinacea

*biotin (for hair growth, post WBR)

In terms of food, we've tried to fuel up on: 

*salmon

*flax & chia seeds

*coconut oil & water

*almond milk (for calcium)

*dark greens (kale, spinach, brussel sprouts)

*turmeric 

*berries & citrus fruits

 

Questions that I'm hoping you all can (please) help with:

(1) Of all the "cancer super foods"  & supplements which have experience shown are *actually* important for adv. melanoma? Any validation for ones I listed above? 

(2) We ran into some trouble with echinacea...high ALT liver # and echinacea may have been to blame...were originally giving this supplement to boost immune system & help prep it for immunotherapy... and now I'm reading mixed opinions on turmeric (some say this interferes with Mek/Taf combo?) and have also read some mixed opinions on calcium. Any seemingly smart choices that actually do more harm than good? 

(3) What foods are taboo & should we absolutely refrain from (heard rumors of red meat, dairy, even carbs?...)

(4) Any other important lifestyle changes? exercise?

(5) Any specific foods/supplements/activities known to help with brain mets/brain recovery?

(6) What have you all taken to prepare for (and power through) immunotherapy? This is the next step for our family so we want to start preparing body now :)

Thanks a million! Any help would be appreciated! This forum is invaluable :) 

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Wilbur's_Mom's picture
Replies 5
Last reply 3/9/2015 - 5:55pm

My father has Stage 3C melanoma and is in a clinical trial receiving Yervoy.  He's had four treatments so far and has progressing intestinal symptoms most commonly diarrhea.  His oncologist is aware and says it is a normal side effect.  He takes Imodium.  Have any other Yervoy patients had success with any other OTC treatments or herbal/home remedies for diarrhea and stomach cramping?

 

Thank you,

Stephanie

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Julie in SoCal's picture
Replies 2
Last reply 3/9/2015 - 5:29pm

Hi Friends,

I've just come across this YouTube video explaining how PD1 works.  It's easy to understand, there's pictures and it's only 4 minutes long.  

http://youtu.be/aobxYfY-8p0

Blessings,

Julie

Stage 3c: WLE, SNB, LND, HD-INF, GM-CSF, IPI, PEMBRO.

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Jen P's picture
Replies 1
Last reply 3/9/2015 - 2:42pm
Replies by: nlavine925

Is anyone here a patient of Dr. Jeffrey Infante in Nashville?  Wanted to know what you think about him and his bedside manner?  Thanks!

 

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Anonymous's picture
Anonymous
Replies 2
Last reply 3/9/2015 - 11:47am

has anyone experienced  a pain in the leg after first infusion? If so what can i do for it ,is keeping me awake at night?

hazel43green

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yazziemac's picture
Replies 3
Last reply 3/9/2015 - 10:29am

Hi

My husband, Pete, was originally diagnosed with Stage 3 in July 2013 and has had rapid progression since then:  January 2014, November 2014, February 2015.  He now has multiple mets in liver, muscle and bone and starts Ipi next week.  Is there evidence to suggest that he has a poorer prognosis because of the rapid rate of progression of his disease, as opposed to someone who has years between new mets?

 

Thanks for any information on this.

 

Yasmin

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MindyD's picture
Replies 4
Last reply 3/9/2015 - 7:48am

Hi all,

I am only 7 weeks post-op from a WLE on my back, and SNB (neg).  2 days ago, I noticed a new spot about 2 inches from my fresh scar and had my daughter check it out.  She said it looked like a "popped pimple"...   so I thought nothing of it.   However, it seems to be evolving rather quickly...  Today she looked at it again, and it is bigger and now dark red with a darker brown spot on the side.  It feels exactly like the original primary... itches like crazy but stings and burns when I touch it.  I had her take a close up pic, and it even looks like a "mini me" version of the original. 

If the beast is back, would it be considered a local recurrence or an in transit met?  I find it hard to believe that a recurrence would happen this quickly, especially given the huge margins my surgeon took.  He initially said the incision would be 6 cm total, but it ended up being 6+INCHES.  Still not sure why.  

Has anyone heard of this kind of recurrence so quickly after a WLE?  I know I "shouldn't worry until we know for sure", but easier said than done, right?  The idea of doing this surgery/recovery again so soon is freaking me out!       

Appreciate any insight... 

Hope everyone is having a great week!!  :-)  

xxoo

- Mindy

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