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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OzzieK's picture
Replies 11
Last reply 5/20/2014 - 2:48pm

This board has provided a wealth of information. THANK YOU to all of those that support and educate!

Very brief background: My dad had 4.9mm nodular diagnosed in January, WLE and complete axillary node dissection under left arm (8 of 48 with melanoma). He has had 2 local recurrences since, with the first one removed surgically. The second one is growing on the outside of his WLE scar (from 1st local recurrence) and he has a couple of very small mets in the tissue in the same general area. Organs are clean thus far.

His specialist doc (O'Day from Bevery Hills Cancer Center) started him on Yervoy on Friday and does not believe surgery is necessary/helpful at this time. He wants to see how the mets respond and then, depending on how things go, may continue with the full 4 doses of Yervoy or switch to PD1 expanded access.

My mom spoke with a general surgeon friend and he insists that the mets need to be removed if they can be. Dr. O'Day feels differently and wants us to trust his judgement. We do and understand his reasoning, but can't help but have some doubt about just leaving the mets there indefinitely and risking them growing and spreading further. After all, surgical removed is or used to be best practice right??

Anyone else have a similar experience? Could really used some insight.

Thank you in advance!

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camping_mama's picture
Replies 32
Last reply 6/11/2014 - 2:50am

Hi all,

New to the melanoma world, with a 7 year old daughter diagnosed about 3 weeks ago.  (T1b, wide exsision and SLNB completed, awaiting results of SLNB).

Have any of you had experience with DMSO and turmeric/curcumin.  I have read a lot about the anti-cancer aspects of curcumin, but many also report that it is difficult to assimilate significant amounts through the diet.

My thought is dissolving in DMSO and rubbing near the area of the primary tumor and possibly the lymph basins.  (DMSO takes anything dissolved in it directly into the skin and cells).  I realize that DMSO isn't "approved" for this use, but it seems that the minor risks could be offset by the cancer fighting benefits.  

Anyone tried it?  Thoughts?

http://www.mdanderson.org/newsroom/news-releases/2005/07-11-05-potent-sp... (one of many reports on the tumor inhibiting quality of turmeric).

 

 

 

 

7 year old daughter recently diagnosed with melanoma. T1b.  SLNB results clear. 

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starletwoman2007's picture
Replies 3
Last reply 5/21/2014 - 9:09am
Replies by: ecc26, starletwoman2007

Just been told that my brain mets have got worse and that need wrbt. I am currently on vem only. Just wondered who had had it and been any effects. Also how successful has it been for people?I

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Nadia's picture
Replies 9
Last reply 5/20/2014 - 11:31pm
My husband was enrolled in the BMS ipi/nivo three arm trial, he showed both progression and new growth and was kicked out. When he was unblinded we found out he was on the ipi only arm. He is not eligible for the EAP Mercks trials since he is Braf positive and he never took any Braf drugs yet. He started two days ago to take Dabrafenib.
 
The plan right now is to let Dabrafenib to do it's magic, for as long as it works, 8 months average, and then go for the antiPD1, hopefully available either as EAP or as standard care for people that failed ipi and Braf meds.
 
But I do have this thing in mind that really stresses me out. As almost all the stats I read are saying that antiPD1, which as of today is everybody's dream treatment, is only working on 38% of the patients! what if Dave is one of the unlucky ones? Is there a test out there that tells if his melanoma cells are expressing PDL-1 and antiPD1 will work? I'd rather know this sooner rather than after months of unsuccessful treatment, and try to find another line of treatment, like TILs. 
 
I would only hope that my answer lies on one of the tests that BMS performed on his blood and melanoma tissue they biopsied. I understand why BMS would not make this public information, they obviously don't want people leaving the trials when they find out antiPD1 doesn't work on them. I am not going to bring up any ethical issues I may have. I just want an answer: is there anywhere in US or Canada, heck, even in Europe a lab that would analyze Dave's blood or melanoma tissue and tell us if his melanoma would respond to antiPD1 or not?
MariaS
 
Posts: 7
Joined: 24 Jan 2014 23:28
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SamC 23's picture
Replies 4
Last reply 5/21/2014 - 3:27pm

I met with my Thoracic surgeon today and feel relieved yet still nervous for what lies ahead. Next Tuesday he will perform an EBUS, I didn't know but lymph nodes in my lung are enlarged. He will biopsy the nodes and hand them over to a pathologist in the OR and determine if it is MET or not. If it is MET they will leave the node in my lung as a marker for treatment. If the lymph nodes are negative a wedge resection will be done. 

in essence more surgery is better then a little. I'm staying positive for the best outcome. Definitely sucks having to wait yet another week to determine what is going on.

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Jme's picture
Replies 10
Last reply 5/21/2014 - 6:35pm
Replies by: Jme, Anonymous, Gene_S, OzzieK, Wolverine

 

My husband Was recently diagnosed with a 3b or 3c.. Unknown primary, Nodular melanoma. WLE in December with SNLB-  Lymph node clear.  Had a met occur on the edge of the scar in April and biopsied. Which actually ended up removing the met. Margins clear on biopsy. We are BRAF positive.  Where are consulting a second opinion at MD Anderson. Thoughts on PD-1? Yervoy, etc?
Also, his Sentinel node was on the opposite side from his Nodular tumor which several doctors find unusual.. Anyone had this occur?
 

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Anonymous's picture
Anonymous
Replies 6
Last reply 5/21/2014 - 12:15pm
Replies by: Mat, ecc26, starletwoman2007

Can someone tell me whether they have had wbr and if was successful. Did there hair grow back?

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mwcollins's picture
Replies 3
Last reply 5/20/2014 - 5:17pm
Replies by: OzzieK, BrianP, hbecker

So I have been a little quiet lately (and I think Kevin has as well). We have been enjoying NED since his surgery in February doing normal life activities and celebrating children's accomplishments. Reality, however, has come back around and Kevin's 3 month scans are scheduled for tomorrow. Hearing all the warrior stories you all share make me less worried about whatever the results are tomorrow, so thank you all for that. I am so hoping and praying for more NED status, but am ready for anything!

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Anonymous's picture
Anonymous
Replies 2
Last reply 5/20/2014 - 9:35am
Replies by: ecc26
tcell's picture
Replies 5
Last reply 5/22/2014 - 3:39am
Replies by: tcell, kpcollins31, Gene_S, Mat

Hi all,

had my first scans after begin of BRAF / MEK therapy in February this morning and will discuss the results on Friday with my oncologist.

I originally had mets on lungs, liver, adrenals, pelvis and th-10. Hoping that my tumor burden has been reduced at least at bit!

I had no brain mets according to the PET they did back in February. The onc said that because of that there is no need for an MRI but just had a CT of skull, thorax and abdomen done. He suggested that if they find something suspicious in the CT we would do an MRI of the brain

Q: Do you usually get MRI scans with stage IV melanoma every 3 months as a routine? Is the CT still accurate enough to show lesions in the brain, especially when they are rather small?

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beatricefromPARIS's picture
Replies 1
Last reply 5/21/2014 - 9:08am
Replies by: Tina D

Hello Tina,

A quote from one of your 2012 messages when you had to stop Zel because of uveitis

"My pupil is actually shaped like a sideways heart at the moment... looks rather unusual, haha!"

Did that pupil problem solve in the end and how?

I also had to stop Zel because of uveitis early January. 2 months after stopping, I developped on one side a drooping eyelid and enlarged pupil (reactive but larger than in the other eye). Exams have ruled out serious causes such as problems in the brain which could damage eye nerves.

My ophtalmologists here seem puzzled by this rare occurrence.

Just curious to know what your experience is...

Thanks in advance

 

Beatrice

 

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ncdaniel's picture
Replies 1
Last reply 5/20/2014 - 3:09pm
Replies by: Janet Lee

Has anyone had WBR more than once? I know at time this is done but has anyone had experience with a second WBRt?  My wife currently has to small spots 5mm and 7mm plus. Numerous small spots. The current response from medical treatment is wait 4 weeks for new MRI and then plan treatment based on results. This plan makes sense as there is questions on what small spots will do.  My interest is has a second treatment of WBRT had any significant effects. while our med team has not reccomended WBR I am thinking this could be a possibility.  She has already had gamma knife in September followed by WRBt at that time. No issues until last week.

Daniel

 

Trust in God - Live one day at a time

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Expanded Access Program With Nivolumab for Subjects With Histologically Confirmed Stage III (Unresectable) or Stage IV Melanoma Progressing Post Prior Systemic Treatment Containing an Anti_CTLA-4 Monoclonal Antibody

https://clinicaltrials.gov/ct2/show/NCT02142218

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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Anonymous's picture
Anonymous
Replies 1
Last reply 5/21/2014 - 2:09pm
Replies by: NYKaren

Can you tell me ate there any people out there who have had long term brain mets. I have just been diagnosed with them and just wondered if I stood a chance x

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