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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flvermonter's picture
Replies 2
Last reply 6/6/2014 - 3:50pm

Hello, I need to update the profile once i find it again, but would like some help in next direction.  My husband had BOTH lung cancer (right lung) and melanoma on the right side.  He had all the lymph nodes removed and was advised it had passed beyond; however, no other site found in May 2012.  His petscans were good through Jan 2014.  By the way had open heart surgery for aortic valve replacement Dec 2012.

He balance became quite off and worsened over time.  Petscan was good, MD checked and ok, ifnally went to a Nerology Dr who ordered and MRI this was end of March 2014.  3 metastic tumors showed on the brain.  This was followed by WBRT that completed 3 weeks ago.  His balance was somewhat better for awhile, but is slowly worsening.  Additionally, his righ hip or top of his right light has sharp pain when he stands.  He has also been on prednisone since 3/22/14 for the swelling on the brain.

He had a petscan last week, it showed no other tumors in his body, albeit, a suspicious spot on his top of right femur.  That is getting a catscan today.  The petscan showed the 3 tumors that the March 2014 showed.  The Radiation Onc said it may be just the swelling from the radiation and that may be unusual for radiation not to kill the turmors.  He added that melanoma is unpredicable.  So we are waiting to see if his balance improves and checking the leg. 

 

Here is the MRI info from 3/20/14:

asymmetric areas of vasogenic edema involving the right posterior parietal lobe and left frontal lobe as well as the cerebellum on the right side.  A discrete 18-mm mass in the right posterior parietal region and a larger 2-cm mass within the cerebellum on the right side.  A distinct lesion within the left frontal lobe is not appreciated; however, given the asymmetric white mater changes, it is highly suspected that a third lesion in this location is present.

Here is the PETscan from 5/30/14:

Hypermetabolic 29mm right cerebellar metastasis with SUV of 8.5.  There is circumjacent vasogenic edema with mass effect and effacemetn of djacent margin of fourth ventride.  No hydorcephalus.  A second 20 mm intensely hypermetablock metastasis with SUV of 11.2 in superior right parietal lobe involving precuneus.  Circumjacent basogenic edema with compression of overlying parietal cortical suici.

 

He has not seen a medical onc, only the radiation onc.   I think we need an MRI to compare apples to apples for sure, but can melanoma be treated with radiation and NOT be killed?

Hugs to all, patients and care givers.

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odonoghue80's picture
Replies 12
Last reply 6/6/2014 - 4:44pm

Hi there,

Has anybody have any surgeries while on Anti-PD1 clinical trials? I have been on Anti1-PD1 / Anti-KIR clinical trial for just over two months. I had a mixed response from my first scans. First of, I'm feeling much better which is great, and some of the tumors shrunk, or even resolved. So I'm happy about that, however, there were others that grew and some new tumors appeared. Now both me, and my oncologist are unsure what will happen in the short term. So I want to be ready to know what the next treatment option is.

Since I have numerous accessible tumors, I want to have a tumor or two, taken out at MD Anderson so they can try to grow the Tcells. If my TIL's grow, MD Anderson can froze those until I might need them, or if I'm qualified for the TIL therapy.

My concern now is that I don't want to just jump ship from my current Anti PD1 / Anti KIR trial. I definitely don't want to get kicked out of the trial by going to another center and having a surgery in the middle of a trial. Is there any way to find out if this is possible? Is there a way to call the pharmaceutical drug/trial directly and ask them?

My reason for removing the tumors and testing to see if MD Anderson can grow my TIL's is a type of insurance for myself. This way, if my current trial/drugs don't work, then I know ahead of time if the TIL therapy is a next option for me.

Any thoughts? Or help? If anybody else encountered similar problem?

Thanks,

Shane

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DUSTILANE's picture
Replies 1
Last reply 6/6/2014 - 6:26pm
Replies by: joelcairo

Has anyone ever heard of melanoma causing dementia?

Dustilane

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brittanyx's picture
Replies 6
Last reply 6/6/2014 - 7:55pm
Replies by: michaelinsocal, ed williams, Ginger8888, Becky, Anonymous

I'll be doing the interferon treatment for a year and was curious if anyone here has done it or doing it and how it was/is for them and the side effects?

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on June11. All due to literally "one" Mel cell in sentinel node biopsy. To say we have waffled back and worth on this is an under statement.

As her primary care giver, what should I be aware of and expect?

Thanks

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Anonymous's picture
Anonymous
Replies 6
Last reply 6/7/2014 - 3:14pm
Replies by: jbronicki, Anonymous, FayFighter, Fen, buffcody, hbecker

we just lost my hubby and father to two great kids at 56, on our 34th wedding anniversary from metastatic melanoma to the brain. He couldn't get into clinical trials as he had brain mets and he couldn't get into the Merck 3475 early access due to growing brain mets. Isn't it contradictory that the early access is also called 'compassionate care' yet someone who so desperatly needs the drug is denied it??This medical system is majorly screwed up. He never had anything on his skin. They found the cancer, already metastized, on his lung in April 2013. It was removed in May 2013 and then it reoccurred in his brain in Nov 2013. He was the most kindest, patient, ethical person and taken way too soon.

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rgrand's picture
Replies 5
Last reply 6/8/2014 - 11:04am

I am on the mend for my foot skin graft. Looks like my body has decided to slough off the outer layers of the epidermis. My surgeon is "cautiously optimistic" that the deeper layers of skin in the full thickness skin graft are healthy and will grow new skin layers to replace the sloughing skin.

Initially my punch biopsy indicated a Breslow depth of 0.4mm and a Clark level II.

Long story short, I think they removed all my cancer and it doesn't appear to have spread anywhere. For those interested, here's through path report:

FINAL PATHOLOGIC DIAGNOSIS
A. SENTINEL LYMPH NODE, RIGHT INGUINAL, SENTINEL LYMPH NODE
DISSECTION
-- NEGATIVE FOR MALIGNANCY IN ONE LYMPH NODE
B. SKIN, RIGHT PLANTAR FOOT, EXCISION 
-- MALIGNANT MELANOMA, ACRAL TYPE, COMPLETELY EXCISED, SEE
COMMENT
-- BRESLOW DEPTH: 1.03 MM
-- CLARK LEVEL: III
-- HOST RESPONSE: PRESENT, NON-BRISK
-- REGRESSION: NEGATIVE
-- MITOSES COUNT PER 1 MM2: 1
-- SATELLITOSIS: NEGATIVE

-- ANGIOLYMPHATIC INVOLVEMENT: NEGATIVE

-- PERINEURAL INVASION: NEGATIVE 

-- ULCERATION: NEGATIVE

-- SURGICAL MARGINS: PERIPHERAL AND DEEP MARGINS ARE
NEGATIVE

-- PATHOLOGIC STAGE:pT2aN0
JOHN FITZGERALD KUNKEL M.D.

** Report Electronically Signed by JFK **
Comment
The melanoma exhibits a spindle morphology. Breslow depth is
ascertained on the Melan A stained section.
Microscopic Description
Hematoxylin and eosin sections of the sentinel lymph node are
negative for metastatic melanoma. Further, immunohistochemistry
stains, S100 protein and melan A are negative for metastatic
melanoma. 

 
Thank you all for the support and help. I wish you all the best outcomes possible and will check in from time to time. I will also contribute to the MRF and continue to point others to the website for useful info.
 
i hope to see continued success on all the trials taking place and send all my good thoughts and positive healing vibes!

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robbier's picture
Replies 1
Last reply 6/8/2014 - 11:54am
Replies by: Jme

I returned home On May 29th from MD Anderson.  while there, I went through a ct scan, and according to dr there is still a small mass near my bladder and another lymph node that needs looking at.  I was told that I could do this biospy either at home or at MD anderson.  I choose to come home to Alabama for test.  Found out I have the BRAF gene, and according toDr, the therpy recommended out there can be administered by my Dr. here in Alabama.  So my thoughts was why travel to Texas for treatment when I can do the same treatment at home.  I go Wednesday to see my Cancer Dr and will go from there.  So I have more test in my future.  I would like to here some success stories from anyone that have been diagmosis with stage 4, m 1 b melanoma that are out there. 

I believe in God and his son Jesus, I know that this is not everyones belief. I know that God has me in his hand, I might not like what I am going through but God is the one that gives me strength fromd day to day.

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jogo's picture
Replies 2
Last reply 6/8/2014 - 6:49pm
Replies by: jogo, Tina D

One year NED as of D-day (June 6th).  Ipilimumab (3 mg/kg body weight) was stopped after second infusion in clinical trial E1609 due to an irAE that was off the charts.  Inflammatory ulcerative colitis seems to have been taken care of thanks to 2 infusions of infleximab (Remicade).  Still careful about diet.  Still waiting for hair to grow back.  Now I'm told that while the MRI did not show hypophisitis, I do have AI, adrenal insufficiency.  My Medic Alert medallion now will have to be the size of a hub cap.  I have anaphylaxis to peanuts and all tree nuts and their oils.  I will have to add information about my adrenal insufficiency.  This is important in an ER situation. I obviously need information and instruction on how to deal with this new development.  Florinef, prednisone, and epi-pens, oh my!  One NED day at a time sounds good to me.smiley

.

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Anonymous's picture
Replies 1
Last reply 6/8/2014 - 9:00pm
Replies by: ecc26

My father's melanoma started on a spot on his neck that the dermatologist he was visiting regularly overlooked the spot for a few years. He had one surgery in 2010 to remove the spot and then it came back months later.  The second surgery they found it also in one lymph node.  It came back again and they found it in a few lymphnodes.  Eventually he had spots in his lungs, adrenal glands and on a rib.  He has been treated at Sloan Kettering and Yale with ippi and PD1.  He had a good response to the PD1 initially where there was 80% shrinkage.  But then the spots started to grow so the dr decided to refer him to NIH for a cell therapy study.  He participated in one study but it didn't work and a lesion appeared on his brain.  He had brain surgery to remove it and was about to start a new study and 9 more lesions popped up.  He is now back at Yale and will be undergoing brain radiation this week and then determining the next treatement plan with his oncologist.  Anyone have any success stories when the disease progressed to this point or been in a similar position?  Support and guidance would be appreciated:)

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Pembrolizumab (MK-3475) which targets the programmed death (PD-1) pathway produced a 1-year 69% survival rate.
A combination of the investigative PD-1 inhibitor nivolumab in combination with another targeted agent ipilimumab (Yervoy) produced a 1-year survival rate of 85% and 2-year survival rate of 79% for advanced melanoma patients.

ASCO: Targeting PD-1 Works in Advanced Melanoma:  Published: Jun 5, 2014
http://www.medpagetoday.com/MeetingCoverage/ASCO/46159

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

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mwcollins's picture
Replies 4
Last reply 6/9/2014 - 10:10am

Kevin just left about a half hour ago to go  back for his MRI.  His PET scan was clear a couple weeks ago, but part of his liver "took on more constrast" than the other.  No measurable mass, no numbers with the amount of uptake, blood work was clean as a whistle, but MRI was suggested to see what is going on.  I was told that on a scale from 1-10 of the worry factor that this is a 1.5.  This coming from the Treatment Coordinator at Wake Forest Baptist Medical Ctr.  She and the doctor only work with mel, so I'm putting a lot of trust in her, the doctor and God.  Praying that this isn't anything, but the roller coaster continues. .  .

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My past topic related to our need to transfer into one of the carriers that provide coverage through the Affordable Care Act. I lamented that our choices around Greenville SC are very limited and appear to exclude coverage for some of the drugs my wife is and will be taking in her battle with Melanoma. I am looking into some of the carriers in the Charlotte area, and it appears that we may have better options in that community.  I have no problem moving to the area if it means we can get her the care she needs.  The carriers listed, include Aetna, Cigna, Humana and Coventry One. I am only starting to research their coverages but at least Cigna has some Oncologists for us to work with.

1) Does anyone currently have coverage with any of these carriers - with the plans provided under the ACA?

2) Doe anyone have suggestions for doctors or clinics that they are using?

Thanks in advance for your help.

John

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braunerk's picture
Replies 3
Last reply 6/9/2014 - 5:15pm

So I had the testing and I am neg for BRAF NRAS and CKIt. I am starting ippi on Friday and hoping for an EAP for PD-1 to open soon. I am in Tucson AZ so does anyone know of an opening for PD-1 on the west coast I will travel if I can get into a trial. IL-2 is not really an option due to my asthma I am stage 4 so I am open to all suggestions. 

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ckoch's picture
Replies 7
Last reply 6/9/2014 - 9:02pm

I finished my four treatments of Yervoy on April 24, 2014.  During the treatments I suffered from most of the common side affects, headaches, itching, tirednes all which resolved after treatment ended.  .   Around two weeks after completing the treatment I was hit with severe fatigue. I often times sleep up to15 hours perday, I have severe body weakness and aching.   It is so bad that i have had to go on disability because I am unable to work.  In 2010 I completed 1 Year Interferon and the symptoms I am having now are just like those I experienced while on Interferon.

Wondering if anyone has experienced, what I feel is a delayed response to Yervoy?  If so, how long did it last.  Would appreciate any input.

BTW 1st PET/CT showed tumors have shrunk to almost nothing.  Will re-scan in July.

Thank you,

Cindy

 

Cindy

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