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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braunerk's picture
Replies 4
Last reply 3/14/2015 - 9:09pm

Has anyone had thier adrenals come back to life after failure from Yervoy. My endo says mine won't come back so I will be on steroids forever. 

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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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Anonymous's picture
Replies 6
Last reply 3/18/2015 - 10:32pm

My friend aged 62 years was diagnosed with metastatic malignant melanoma in April 2014. HPR showed malignant melanoma of sole with invasion of reticular dermis, tumor thickness upto 3mm no PNI deep margin 1 cm away and 7/10 pelvic lymphnode positive with extracapsular extension and 8/09 ingunial lymphnode ECE. She underwent surgery in May 2014.

 

The doctor opted for observation. She was doing fine till Oct 14, when she complained of imbalance and right lower limb weakness.The MRI showed multiple intraparenchymal lesion scattered bilateral, frontal, parietal,left occipital region largest measuring 2.5x2.3 cm. She received external beam radiotheraphy to whole brain from 27/10/14 -6/11/14. PET CT on 17/1/15 showed mildly metabolically active lesion in left external iliac region and brain lesions with interval changes. She was doing completely fine . She one day complained of pain in both knees and had difficulty walking. We had to support her even to go the restroom. Her 6th chemo was scheduled on March 2 . We went to the doctor and informed him about this. He delayed chemo for 1 day and gave her meds like mannitol etc. Then continued with her chemo and said the pain is not related to lesions in brain, She got discharged on March 7. She came back and was not able to get up herself due to weakness. Next day she was in a hazy sort of situation, taking time to understand. Her right leg and right arm had become very weak. We rushed her to emergency the next day. The doc ordered an MRI of the brain. The reports showed multiple intraparenchymal well defined nodular lesions scattered in frontal ,parietal,left occipital regions, largest measuring 3.1x2.8 cm in left frontoparietal region. Moderate perilesional edema is noted with effacement of frontal horn and mild midline shift of 3.5 mm towards right.

They asked us since it is last stage and the problem has reoccured, there is little hope. Now they would be doing stereotactic RT from 12/3/15  for 10 days but arnt hopeful if it would help. They say she has just 3-4 months to live. In the meantime her condition has improved slightly . She is able to get up on her own and there is less weakness in right arm and leg. Her all other reports are good.

Just 3-4 months to live when she has shown improvement..how is this possible? Is this illness so dreadful? Is there no chance of survival in case of brain mets? Looks like my world has come to an end after hearing this..can anyone please help? Is there any ray of hope.

Stay Blessed!

 

 

 

 

God bless you

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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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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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arthurjedi007's picture
Replies 5
Last reply 3/12/2015 - 4:21pm

Anyone had issues coming off fentanyl and did anything help?

i was on the twelve patch a couple weeks then the 25 for a couple months. I was having lots of stomach issues and diarrhea I thought was due to the radiation. So much so they did a ct of the abdomen and pelvis. Granted the Imodium did help the diarrhea a lot. Not sure why but that day I decided to drop down to the 12. Low and behold my stomach issues were a lot less and when they got the ct results they could not find anything wrong. So after 6 days on the 12 I felt weird. Like very agitated sleeplessness. Like my skin was crawling. So I decided to go back to the 25 but after only a few hours my stomach started messing up so switched back to the 12. Still lots of agitated sleeplessness so 2 days later I took the patch off and have been without for 2 days. But the sleeplessness agitation skin crawling continues. Not all the time but usually off and on especially in the evening and night. 

I googled and apparently lots of people have this issue. But the only advice seemed to be to drop to a 5 patch but they said that didn't really help either. My pain or nerve tingling in my left foot and pain in my left hip and left lower leg are tolerable but this sleeplessness is crazy. Also read the foot nerve tingling others have when coming off fentanyl. Here I thought it might be nerve damage from radiation or the keytruda or a tumor pressing on a nerve only to find it really might just be part of the fentanyl withdrawal. Other advice was pretty much tough it out and hope it subsides which could be weeks or months.

Very crazy stuff. Any other advice what to do? I'll be seeing one doc tomorrow and my other one the next day but I've found it best to try and resolve things like this myself cause they tend to go way off track with more meds which I'm going to refuse from now on again. For example I was having massive syatic nerve pain in my left leg when I sat so they kept throwing stronger pain stuff at it and started radiation of the t4 and t5. Finally I became coherent enough to google and got a tailbone coxic cushion and low and behold instant relief when sitting. So yeah best to educate myself first in my opinion. Granted he's a great radiation doc and I would have been paralyzed without him but things like this are not his or his wonderful nurses specialty from my experience. Anyway I'm rambling. Sorry. 

Artie

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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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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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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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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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Mom2Addy's picture
Replies 6
Last reply 3/22/2015 - 4:25pm

My husband is due to get his second infusion tomorrow. Did others find that the side effects worsened or change as you progress through the regimen? We're you able to keep working? Thank you!

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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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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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Anonymous's picture
Anonymous
Replies 1
Last reply 3/8/2015 - 4:43pm
Replies by: arthurjedi007

After 204 weeks on braf/mek. It is time to move on to the next step. Still only have the original met but with a small temporary one on the surface of the brain. After having that removed later this week I will be moving on to keytruda. Anyone have any thoughts?

I refuse to let this beat me. I WILL NOT LEAVE MY GIRLS! MELANOMA CAN BITE ME!

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Anonymous's picture
Anonymous
Replies 9
Last reply 3/11/2015 - 1:59pm
Replies by: arthurjedi007, Want2help, Anonymous, Patina

My friend aged about 62 was diagnosed withmetastatic malignant Melanoma in April 2014 . HPR showed malignant melanoma of left sole with invasion into reticular dermis,tumor thickness upto 3mm, no PNI deep margin 1 cm away and 7/10 pelvic lymphnode positive with extracapsular extension and 8/09 inguinal lymphode positive ECE.She underwent surgery on May 14.

 

The doctor opted for observation. Her scans were all clear till 25 Oct, 14. She complained of imbalance and right lower limb weakness. The MRI of brain showed multiple intraparenchymal lesion scattered in bilateral frontal,parietal,left occipital regions, largest measuring 2.5x2.3 cm in left frontoparietal region, She received palliative external beam radiotheraphy to whole brain to a dose of 30gy/10# from 27/10 to 6/11/14 PET CT on 17/1/15 showed mildly metabolically active lesion in left external iliac region and brain lesions with interval changes.  She has just completed her 6th chemotheraphy and now has weakness in right arm and right leg. She is facing a slight not very much) difficulty in understanding and responding. Looks like the brain mets are active again. She was doing good after her radiation and this happened suddenly.

We will see the doctor tomorrow. My question is how much raditaion can be given to a person? Her radiation got over on 6/11/14. What are the survival chances in case of brain mets? I love my friend and it dreads me what might happen next. I am just not able to function now

 

Can anyone please help.

God bless!

 

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