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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kalisama's picture
Replies 6
Last reply 12/8/2014 - 8:33am
Replies by: kalisama, ncdaniel, mary1233

landed in the hospital, when i thought i was going for a final yervoy treatment. my body had other ideas. still looking towards starting the Keytruda, but am focusing on getting my strength back for a few weeks first.

question, we haven't heard about Temador in many years. my onc is suggesting i go on this due to my proclivative towards brain mets and LMD. he is suggesting i start this now and use it in combo with the PD1/

this is starting to sound a bit mad scientist to me. has anyone with brain mets here had any success with Temador. i've searched the forums and while people were having some success, this was quite a while ago. there were threads of people combining with early PD1 trials but i found little follow up.

if anyone has gone this route or has thoughts about it, i am very open to hearing.

as always, thank you in advance and bless,
kali

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Linda56's picture
Replies 3
Last reply 12/7/2014 - 11:20am
Replies by: Linda56, rick1981

Hello everyone,

 
Thought I should post another update which will give hope to other fellow sufferers.
 
In March 2014  changed from Zelboraf to Tafinlar which shows lesser side effects for sun sensitivity and skin problems.  Tafinlar contains the same substance as Zelboraf, namely vemurafenib.
I had some troublesome months since April 2014 when small lesions started to appear on the scan.
There was among others a possible bone metastasis on the sacrum wing and the doctors were already planning some radiotherapy sessions, but since it didn't hurt anymore, they decided that it was not appropriate to start the irradiation.  They decided to wait until the next scan and the lesion showed unchanged after two months.  
In the meantime, I had an accident and I broke my hip.  This happened in August and during surgery they placed a hip prothesis.  My scan of September showed also various lesions, but the doctors said that this was due to the accident.
And then in October 2014, I passed another petscan which shows NED again.
This is just to say that when the scan shows sometimes worrying lesions, that these can dissappear again after a few months.  During all this time I didn't stop my medication and I feel very good for the moment.  I have very little side effects now and I'm fully recovered from my hip surgery.  
I will be able to celebrate another wonderful Christmas together with my family. 
 
Greetings to everyone  :D 
 

Linda

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SABKLYN's picture
Replies 2
Last reply 12/6/2014 - 4:41pm
Replies by: SABKLYN, Marianne quinn
churchwelldana's picture
Replies 14
Last reply 12/6/2014 - 12:05am

 

I was recently diagnosed with stage 3 melanoma. I've had a SNB and one of the lymph nodes was positve for cancer. Now they will 
remove all the remaining lymph nodes from my groin. The nurse said the typical recovery time would be 4 weeks. Is that accurate? I'm a fourth grade school teacher and I was wondering when I might feel like returning to work.

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Anonymous's picture
Replies 2
Last reply 12/5/2014 - 12:17pm
Replies by: sweetaugust, DZnDef
Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Anonymous's picture
Replies 4
Last reply 12/5/2014 - 11:31am
Replies by: StephyD83, Janner

Hi Everyone-

I wanted to get everyones opinion on this. How likely is it that I can have matestis since the Shave biopsy that was done in November 2012 was said to be Severly Atypical and never removed any further when in fact it was Stage 1A .4mm with occasional mitotic figures & peripheral margins involved. It wasnt until March 2014 that I had the re-excision and it was found to be a Scar with residual Melaonma In Situ extending to within 1 mm of the peripheral margin and it says that the dermis is alteres by a moderate degree of solar elastosis.

So now it has been 2 years & I still do not have the propert 1 cm margins as of yet.

Any advise is welcomed.

Thanks!
Stephanie

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Mat's picture
Replies 2
Last reply 12/5/2014 - 10:20am
Replies by: arthurjedi007, Bubbles

In 2013, there was a Phase I trial combining dabrafenib and ipi.  (There was also an arm that included mekinist, but it was suspended due to a disproportionate number of patients experiencing colitis.)  As a Phase I trial, the purpose was to test safety and tolerability--but does anyone have a sense for how the patients on this trial are doing?  At one point in the not-so-distant past, folks were very optimistic about this combo.  Thanks.

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JustMeInCA's picture
Replies 4
Last reply 12/5/2014 - 6:19am

Dad got the approval today from his oncologist at UCSF to try cannabis oil for pain management. He said he's seen other people do very well with it and that there are no contraindications with his Keytruda treatments.

Next step: off to the dispensary. The doctor says that the note from Dad's PCP on a prescription pad is all we need, as there is no actual "prescription" that can be written for it anyway. (There is some irony there somewhere that we have this legal drug that is completely unregulated.) He just said that no one has ever OD'ed on cannabis but that we'll want to start low and then add more as needed after 30 minutes or so.

Welcome to the Wild West.  

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StephyD83's picture
Replies 10
Last reply 12/5/2014 - 6:16am

Hi Everyone-

I went to UCSF Melanoma Center yesterday for a 2nd opinion & they reviewed all of my pathology slides. They found that I never had a Severely Atypical Mole that was not re-excised & turned into Melanoma InSitu like I had thought. It turns out that 2 years ago it was actually Invasive Melanoma 0.4 mm in thickness, extending intraepidermally to the peripheral margin Stage 1A.

So the Invasive Melanoma was left on my face for 17+ months & retaken out 2 more times this past March & now I am being told that I need to have another surgery because I have never had the proper margins of 1 cm I only have 5 mm at this point.

I also showed her that my PET/CT Scan light up on a few areas my Spine, Ovaries, Lymph Nodes under both of my arms, & my right knee. She said this needs to be looked into.

What do you all think of this?

Thanks!
Stephanie

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Emcjones1's picture
Replies 3
Last reply 12/5/2014 - 1:07am
Replies by: Momrn5, Emcjones1, BrianP

Quick questions for those who have had PET CT scans, did your oncologist mentions the presence of nodules they would be keeping an eye on that showed up in CT, but we're not active on the PET. I am wondering how common this is?

i suspect it is common, but am wondering.

 

thanks 

Genie

I am a 50 year old female biomedical scientist with stage 3a melanoma.

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michaelinsocal's picture
Replies 2
Last reply 12/4/2014 - 11:16pm
Replies by: KMick, BrianP

Hello all. It's been one year since my diagnosis of maligement melanoma just before Thanksgiving of 2013. 

The primary was contained in a pinto size growth I had on the outer part of my left ankle, just below the ankle bone. The site was given a breslow depth of 4.2mm. What was unique in my case was that I had the growth since my early 20's. It appeared on the left side of my ankle and grew rather quickly (within 2-3 years) and then stopped. For 20 years it never changed shape or color. It was looked at from previous doctors as nothing to be concerned about. In September 2013, I had a hernia repair surgery. For the first fee weeks my wife had to help me put on socks and that's when she noticed a tiny speck of black smack in the middle of my growth. With her encouragement, I went to my primary doctor who shaved it which led to the diagnosis.

In Dec 2013 I had a WLE done along with a SNB with a subsequent skin Granth to cover up the half dollar size area created by the WLE. The sentinel node biopsy came back for micro traces of melanoma in the lymph node. That lead to a full lymph node dessection on the left side of my groin. The good news in all this was none of the 12 lymph nodes removed were maligement. I'm officially stage 3A. Being off my feet for nearly two months and the physical therapy after the dessection were definite challenges but I weathered it.

I opted to do the 12 month Interferon. I'm half way through it now. The first 3 weeks of high dosage was a roller coaster. By the fourth week I had such bad anxiety, depression and flu like symptoms the Dr had to stop the high dosage and gave me a two week break. Since then it's been weekly self injected shots which have been tolerable and have been put on Remeron (anti depressant) and take Ativan as needed for the axiety.

Some days are better than others. I know see my oncologist every three months along with my dermatologist as well as follow up with my surgical oncologist. 

I realize I am at high risk for reoccurrence but I'm keeping my head up and living my life. I feel I have a good team of doctors watching me. I'm vigilant and so should you. Once we learn to conquer the reality that we'll love with this disease the rest of our lives, the better we can not let it dominate our lives. I'm 41 years old and not ready to leave this earth.

 

So there you have it. Live life to the fullest!

mike

PS if anyone near me in the Coachella valley portion of Southern California has recently been diagnosed, I recommend the following Doctors. 

Dr Hyams surgical oncologist

Dr Amy Law Oncologist

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New webinar on MIF.  It's titled "Melanoma 101" and as the name somewhat indicates, those that have been in the game for a while may not learn anything new.  However, the longer it goes the better it gets and toward the end there was some pretty interesting information.  The first 30 minutes is more prevention but after that it gets to treatments which Stage IVers will find more relevent.

http://melanomainternational.org/webinar/2014/12/melanoma-101-a-brighter-outlook/#.VH3oJzHF_Ls

Brian

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Anonymous's picture
Anonymous
Replies 3
Last reply 12/4/2014 - 2:11pm
Replies by: Anonymous, Jubes, jenny22

about a year ago I reached out for some answers I was told I had melanoma didn't know much just had stage 1 well had a large excision done margin clear, I was told to go about life and not worry kept my appointment with dermatology every three months. Well to make a log story short I have had a lot dysplastic moles removed but know the lastest is stage 2 and near the same site as my first melanoma. I go for surgical consiltation the 18th dermatoligist says I need a surgeon for this one. waiting for my pathology report to be mailed to me so I can know exactly the measurements and everything . Just had to let it out I lost my mother to this awful disease in 1993. I will not just go about life I will fight

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mwcollins's picture
Replies 3
Last reply 12/4/2014 - 10:53am

I wanted to give all you warriors and caregivers an update on Kevin (stage IV since Feb 2014).  After a scare in August with a clean CT scan, Kevin had his routine PET scan and MRI today.  Both were clear to the doctor and one of his staff members.  A radiologist has to confirm, but according to the doc, Kevin is still NED!  Praise God!!!  He did get the opportunity to speak to one of the team members about a clinical trial that involves Yervoy and a vaccine.  Kevin has decided (with my blessing and the support of all medical staff) to hold onto any ammunition for when he has a high tumor load, or an inoperable tumor.  He feels good now, and is currently healthy and wants to enjoy that.  I see the benefits of being proactive, but support him in his decision. There is always the possibility of taking part in a clinical trial and still have a recurrance.  If that were to happen, I know he'd be extremely frustrated with putting himself through the pain and agony of the side effects of Yervoy...  Hold out until you really need it!  Don't pull the goalie yet.

I wanted to let you all know that NED is a blessing, taking life as a gift is a realization that we have all come to, and bottom line, life is precious.  Enjoy your Thanksgiving all.  Hug your families!  Love unconditionally, laugh hard, cry if you need to.  Support each other and know that we are all in it together!  Love to you all!!!

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