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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MariaH's picture
Replies 8
Last reply 7/13/2011 - 10:51pm

Dave and I met with Dr. Kushilani at Roswell today.  Very articulate, intelligent, and personable.  Went very well.  He offered up every option I have researched and even encouraged us to think "outside the box" of melanoma treatments (I.e. clinical trials).  After research, and speaking with all of the clinicians (including the surgical onc who did Dave's LND, who Dave has great respect for) I think Dave is leaning towards IL-2.  He is very healthy with metastases to the paratracheal lymph nodes only, and it really is the only treatment showing complete response in any percentage of patients.  He is healthy enough now to try it, where as if his disease progresses, he won't be.  If IL-2 fails, then he recommended IPI, and if that doesn't work, his tumors are being tested for B-RAF.  I have contacted NIH about the trials with TIL and IL-2, but they are only available if he has failed a prior treatment. 

I am curious though, has anybody heard of radiation prior to IL-2?  I could have sworn I heard of at least a trial which was promising.  If any of you know of this, can you let me know?  I have heard that it increases the chances of an IL-2 response.

Best wishes to all the fellow Mel Warriors,

 

Maria & Dave

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amansinne's picture
Replies 2
Last reply 7/13/2011 - 6:50pm
Replies by: amansinne, MichaelFL

Sorry to make my question so specific, but I was just sent my records, including test results, from my dermatologist and I came across the following for a mole I had byopsied a while back: "compound melanocytic nevus with architectural disorder and mild cytologic atypism of melanocytes (dysplastic nevus, mild)"

Yikes! Can anyone tell me what this means?

Thanks in advance for any help!

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Lauradunc's picture
Replies 5
Last reply 7/13/2011 - 6:14pm
Replies by: Anonymous, jimjoeb, Lauradunc, Carol Taylor, FormerCaregiver

Hi All~

   I am new to this board.  I myself do not have melanoma, however my mom does.  She is currently Stage 4 with a mets to her lung and adrenal gland.  She was diagnosed in 2008 with stage 3b.  Went a whole year with no evident disease and in September of 2009 melanoma popped up in her lymph nodes in her left armpit.  It felt like she had surgery after surgery and we were always keeping up on getting them out.  One year later, August 2010 we found out it had gone to the lung or the bronchial tube.  She looks amazing and is clinically doing excellent!  We took a trip to LA to meet with Dr. O'day...what an amazing man!  He told us what his thoughts were. So, we headed back to Northern CA where we went to Dr. Wang at CPMC.  He also is an amazing dr, very knowledgeable! There we were able to get on IPI when it was compassionate.  She completed 4 rounds, and had a PEt scan.  The results were mixed.  most tumors responded with a few new ones popping up.  Dr Wang said that is very normal.  He said she needed another round.  So, we go this week for our fourth session.  She is still handling it pretty well.  she has been more tired this round and has actually had fevers. She has one nodule on her right side that feels like it has grown but doesn't feel as hard as before. Other than that no real symptoms. 

   So, my question for all of you who are on IPI or Yervoy, or have completed it, what were your symptoms? How did you tolerate it? Also, I am wondering what people recommend to do other than traditional medicine.  Like alternative treatments, vitamins, herbal stuff?  Any help would be appreciated. 

    We are trying to keep our spirits up and keep trusting in the Lord! 

     Thanks for you help,

             Laura (Mom is Stage 4)

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Wilfred's picture
Replies 8
Last reply 7/13/2011 - 6:14pm

Here is something I wrote for family and friends a month ago. I posted it on facebook and was going to send it out via email; I changed my mind about the email. I know that posting it here will be like preaching to the choir, but maybe you would like to copy it and put it somewhere else. I feel better about where I am even though I don't really know what is around the corner. I am glad I found the MRF group, you are teaching me things I did not know. Thank you.

One week ago today, at Sinai Hospital in Baltimore, Dr Didolkar, Chief of Surgical Oncology, removed a melanoma from my right ear - FOR THE FIFTH TIME. It's not his fault, it's mine. I grew up in the Bahamas, got sunburned all the time; nowI pay the piper. It started in October of 1998 when I went to Dr Ronald Sweren, Dermatologist, to have him look at a mole that had started to break open. This mole had been removed back in the late 1970's. He took a biopsy and it came out positive for melanoma. Dr Didolkar removed it. Nothing more until the summer of 2007, then Christmas, 2007, then December 2009, then last week. I have had radiation therapy twice. Less than 2 months ago, I went to Dr Didolkar for my regular six month checkup. Nothing. The same day, I went to Dr Sweren for my regular six month whole body exam. Nothing. Three weeks ago I complained to Miss Ann that I was waking up in the middle of the night because my ear hurt. I asked her to look at it. She saw a red splotch and a large bump. We went to see Dr Sweren. He said he thought it was Chondrodermatitis Nodularis Helicis, an inflamation/infection of the ear cartilage. BUT, he said, given my history, a biopsy was needed. Because of the location, he asked me to go to Dr Byrne, a facial, reconstructive surgeon, and get him to do the biopsy. Dr Byrne saw me in 15 minutes and did the biopsy. Two days later, Miss Ann and I went to Canada to open the cottage for the year. I was not concerned about my ear, I had a case of Chondrodermatitis Nodularis Helicis (sounds cool, right?) not melanoma. A week after the biopsy, I called the doctor for the results. melanoma!! AGAIN!!! What the hell is going on!!!!! Why me????? This can't be!!!!!!!! I could not finish the conversation. Miss Ann was nearby and could tell that it was not good. I cried. A lot. I couldn't think properly. I was pissed off. I was upset. I was scared. That's the problem with melanoma, even with early detection there is no guarantee that where you see it is the only place where it is. I called Dr Didolkar's office and they asked me to come straight from Canada to Baltimore. We stayed two more days in Canada and left. We spent the night with my brother, Vernon and his wife, Lucy. They were very loving and supportive, as was Miss Ann, I was scared. Macho me scared of something you could hardly see. Dr Didolkar had seen the biopsy report. They arranged for all the normal tests: blood work the next day, PET/CT scan, I arranged the MRI. Surgery was scheduled for the following Thursday. We went back to NJ for a few days and then back to Maryland. Surgery was moved up to Wednesday. On Wednesday morning, I went to Sinai at 9:00am for a nuclear medicine procedure where they inject a nuclear substance directly into the melanoma and then tract it to the sentinal lymph nodes for that area. There is NO procedure more painful than this. The technicians hate to do it because they know how much it hurts. Then off to PreOp. The stick an IV in the back of your hand, you get interviewed/checked by doctors, nurses, anesthesiologists, surgical nurses, the surgeon. Then you wait. Did I mention that I was scared? Well I was, even though I had been there, done that four times before. Finally, three hours late, (surgery schedules are fluid) the Nurse Anesthetist came and gave me me a little "cocktail" and I was out of it. So, here I am, sitting here writing this for you, and me, I suppose. Yesterday afternoon, Lisa, Dr Didolkar's Nurse Practitioner, called to say that the pathology report on the lymph nodes was negative (that's a good thing in doctor speak); and that the path report on the section of my ear that was removed showed that there were clear margins. That means that there was no sign of melanoma on the edges of the piece. That is also good news. On Monday, I go back to Baltimore to see Dr Didolkar and discuss what comes next. Radiation? Some other therapy? Who knows? Do I feel better; am I comfortable? NO!!!! I'm still pissed off; I'm still scared. My ear looks like hell - the top of it is not connected to the ear lobe. Did I mention that I'm scared? Do I have good doctors, nurses, technicians, a loving/supportive wife, children, family and friends? Yes!!!!!! I am still scared. How many more times will this happen? Dr Didolkar says I don't own the record; I feel sorry for the poor bastard that does, but I am selfish - why me - I am scared. The attached video is very good. Look at it, show it to your children, talk about it, make them wear sunscreen (at least 30 SPF), share it - and these comments if you want - on facebook or by email to your family and friends. Breast Cancer is a serious threat, but not the only one. Did I mention I'm scared? I am.

If you fight, you may lose, If you don’t fight, you will lose.

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chet's picture
Replies 24
Last reply 7/13/2011 - 6:08pm

Hello everyone. It's been a while, sorry I've been MIA. Just out trying to live and enjoy life:) Anyway, I finished 2 cycles of IL-2, got through 9 bags the first time, then 8 the second time. I felt like I could've done more the second cycle but my whole mood and energy was thrown off by some of the staff at the ICU I was staying at. The lady who was wheeling me up to my room was telling me how she read in the paper that this healthy woman went in for a routine checkup, found out she had cancer, and died 4 months later. Umm, why are you telling me that? That put me in a really bad headspace.The nurse who was putting in my PICC was taking forever and having complications. Mid-week, the PICC sort of came out and they had to reput the PICC in my other arm.

I recover relatively quickly from IL-2, so after being discharged Friday morning, I'm back to my normal self by Monday or Tuesday. My doc says this is due to me being so young. The only discomfort I have is just extremely dry skin and peeling around the ears for about 2 weeks.

My oncologist scheduled me for a CT scan of my chest and abdomen/pelvis 4-5 weeks after the second cycle, which was about 2 weeks ago (March 14). I met up with her last week to discuss the results and I guess they we're good.

Good news is that my chest CT came back negative of any tumors or nodules (WHEW!). I do have a swollen lymph node on the left side of my clavicle that has been there since December 2010 that measures a couple cm long but the CT showed that it didn't change in size since then.

 I'm not sure how to feel about my abdomen/pelvis CT results. The CT of my abdomen showed that my liver, spleen, adrenal glands, pancreas, and left kidney appears normal (another WHEW!). There is a rounded 3.1 x 3.0 cm mass medial to the right kidney, unchanged. No new mass is seen in the abdomen. The mass next to my right kidney is what they initially found back in my CT scan back in Oct. 2010 that got this whole cancer ball rolling. The CT of my pelvis showed that there is a 3.4 x 4.8 cm mass next to my cecum. The mass previously measured 3.3 x 3.2 since my CT back in Oct. 2010.

So in conclusion, the CT showed that the lymph node didn't change in size, the 3.1 x 3.0 cm mass next to my kidney didn't change in size, but the other mass next to my cecum grew a little. My oncologist felt my lymph node and it felt smaller to her and she said she could actually feel a border around it this time which last time she couldn't so she ordered for me to get a PET CT scan the next day. Now I'm just waiting for her to compare the results of this PET CT scan with the one I had back in December. She's hoping the intensity changed. She's going to call me sometime this week to see tell me if I should continue on IL-2 or not. She wants to give this IL-2 another shot and I do, too. I don't feel I gave it my all the second cycle. 

Do you guys think I should go for another few cycles, then get another PET Scan or should I just start looking into IPI? I wonder if I even qualify.

Also, I wanted to start taking daily vitamin and turmeric supplements but she said not to. Did anyone else take vitamin supplements during IL-2??? I don't see why it would be a bad thing. I know this is a very long post, but thanks for reading if you made it this far lol.

Love and light...

“The secret of health for both mind and body is not to mourn for the past, worry about the future, or anticipate troubles, but to live in the present moment wisely and earnestly.” — Buddha

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ValinMtl's picture
Replies 12
Last reply 7/13/2011 - 6:08pm

I'm so excited that I'm jumping in the air (well as best I can with my bad leg).  NIH has accepted me for a clinical trial, I went down last week.  I passed their interview and now I will be going down for surgery next Thursday to remove that nasty left lymph node in left groin.  They will use the lymphocytes to grow more in the lab.  After healing and in a few weeks, I will have chemo and most likely full body irradiation to destroy immune system then they will add lymphocytes and IL-2.  Should over about a 3-week period.  I know it's tough and I am sure nervous but having failed ipi and reading Jimmy B. comments and many otehrs, I know it is the best way to go.  I have to get rid of all the sub-qs plus any other surprises that melanoma has waiting.  I am praying that the good Lord will help me slay the dragon.

A million thanks to Warren G. for his support!!!   Val, stage IV xx

Live Laugh Love Nothing is worth more than this day!

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Anonymous's picture
Anonymous
Replies 27
Last reply 7/13/2011 - 5:50pm

I live in British Columbia, Canada. I am a 63 year old man who had a superficial spreading melanoma on my lower back removed 22 years ago. I had this mole on my back for 10 years and my family doctor said it was nothing to worry about. It was the size of a quarter, and was removed when I saw a dermatologist  after it tingled when I brushed my hand against it. Fast forward to the present, about 5 months ago I noticed a small lump on my back , 3 inches above the site of the original melanoma. My family doctor said it was nothing to worry about, but when I noticed it getting bigger and starting to hurt, I said " I want it off". It turned out to be melanoma in a lymph node. I went to the B.C. cancer agency in Vancouver, the oncologist looked me over, and I was given a full body FDG pet scan.  The pet scan was negative.  There was no Sentinal node biopsy, and nothing else done. I was told to see the oncologist in July. The last 3 weeks. I've had diareha which is unusual for me, and I have soreness in my armpits although I can't feel any large glands other than a pea shaped gland under each armpit. I was surprised the Cancer oncologist  didn't mention any chemo or other protocol to help me beat this. I am scared and would appreciate any advice you can give me. I pray for everyone going through this disease. Any prayers you can spare are much appreciated.

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TracyLee's picture
Replies 2
Last reply 7/13/2011 - 3:42pm
Replies by: nicoli, Carol Taylor

Hi y'all,

Anyone else have little "zit" type bumps, extremely painful, that send burning zaps up your head?

Onc doc says it's melanoma attaching to nerve endings (lots of surgery in that area).

Hurts like the devil! Taking Neurontin to "calm" them down, and Oxy for pain.

Terrible time trying to sleep, just call me Sleepless in Delaware!

Never will I leave you, never will I forsake you. Hebrews 13:5 Cast all your anxiety on Him, because He cares. 1 Peter 5:7 Stage IV 5/16/11 Ipi - 4 rounds May - July 2011 BRAF expanded access trial 8/8/11

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Replies by: jim Breitfeller

Hey everyone,

 

My father in law was just diagnosed with Stage IV melanoma by an oncologist in a small town in Idaho. This oncologist is not a melanoma specialist and seems to have missed some of the big steps in the process- they have no idea where the origin of the cancer is but they know that the tumor in his shoulder isnt the origin. Also they have only done a PET scan- no other tests and they are telling him that they are going to recommend Yervoy but just to wait to see if his insurance will cover it, etc,.

Anyways my uncle is a Stage IV melanoma survivor after IL-2 at Roswell and my aunt has suggested that the first thing he needs to do is get a second opinion from a melanoma specialist in a big city so we are looking for doctors in Southern CA where we live for him to see. Right now we are looking at Dr. O'Day at the Angeles clinic and Dr. McClay at Pacific Oncology but if anyone has any other recommendations for melanoma specialists we would really appreciate it.

 

Also we really are at the start of this whole thing and my uncle's cancer treatment was 10 years ago so if anyone can give us some of the questions we should be asking at the specialists office or anything we should be expecting?  Any info would be very helpful

 

Thanks!

 

Julie

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Harry in Fair Oaks's picture
Replies 7
Last reply 7/13/2011 - 2:00pm
Replies by: Harry in Fair Oaks, Anonymous, dawn dion, jneubert02

...at my appointment at the Angeles Clinic.  Everyone said the same thing:  He is definitely still with the clinic, and he is on "indefinite leave."  I was told to still consider him my physician of record. 

The appointment marked the end of my 8 weeks on the GSK BRAF/MEK trial (I was randomized to the most amount of both drugs).  I am very happy with the results of the latest scans:  They can't find any trace of the sub-Qs, and all the bone mets appear to be smaller!

I'm also happy that the side effects have abated.  No more fevers or chills for the last 3 weeks.  Perhaps just some fatigue now and then.  My nurse told me that taking the BRAF and MEK together seems to lessen the effects of the dugs taken by themselves.

Best wishes,

Harry

 

 

 

Too ugly to die!

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nicoli's picture
Replies 1
Last reply 7/13/2011 - 11:03am
Replies by: TracyLee

Keep us updated. Just like I tell my kids.............if you don't keep in touch, I tend to worry.

Nicki, Stage 3b

Be strong and take heart, all you who HOPE in the Lord. Ps. 31:24

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Hey everyone,

 

My father in law was just diagnosed with Stage IV melanoma by an oncologist in a small town in Idaho. This oncologist is not a melanoma specialist and seems to have missed some of the big steps in the process- they have no idea where the origin of the cancer is but they know that the tumor in his shoulder isnt the origin. Also they have only done a PET scan- no other tests and they are telling him that they are going to recommend Yervoy but just to wait to see if his insurance will cover it, etc,.

Anyways my uncle is a Stage IV melanoma survivor after IL-2 at Roswell and my aunt has suggested that the first thing he needs to do is get a second opinion from a melanoma specialist in a big city so we are looking for doctors in Southern CA where we live for him to see. Right now we are looking at Dr. O'Day at the Angeles clinic and Dr. McClay at Pacific Oncology but if anyone has any other recommendations for melanoma specialists we would really appreciate it.

 

Also we really are at the start of this whole thing and my uncle's cancer treatment was 10 years ago so if anyone can give us some of the questions we should be asking at the specialists office or anything we should be expecting?  Any info would be very helpful

 

Thanks!

 

Julie

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MaryBeth and Jeff's picture
Replies 8
Last reply 7/12/2011 - 10:25pm

My husband has completed 3 of 4 Yervoy  treatments (his 4th treatment is this Friday). He has tolerated it extremely well.  No rash, no colitis,some fatigue. One week after the 1st treatment he did not felt slightly flu like and developed slight pnemonia. This lasted for about 1 day. One week after his 2nd treatment he felt a little bit worse and was tired for about 3 days. After 3rd treament ...he felt virtually fine. I have read posts on here about doctors getting excited when the "yervoy" rash develops..meaning that it is working. I am getting scared that Yervoy is not working. Since his 1st treatment he has developed a mass on his back and several other "lumpy" areas on his arms and legs. His onc just looks at the lumpy areas and says that its the melanoma breaking off and taking up residence elsewhere. For know he just wants to keep an eye on the mass on his back as it is close to his spine. (It was MRI'd). Here is what gets me ....I spoke to his onc tonight and he asks me how far have we gotten on his meds? I ask "what meds". Onc says the Thalidomide and Temador. (we discussed this last week as a next course of action if he fails Yervoy). I had to tell the onc that we havent gotten that far. Onc says we shouldnt wait for the last Yervoy treatment and begin with the Thalidomide and temador. I told onc ...heck no...his final treament is this Friday...we might as well do it. He then agrees with me. I then have to practically school the onc and remind him that  the literature indicates with Yervoy , the mel often gets worse b4 it gets better. Am I wrong here? Does the development of an additional mass and lumps mean Yervoy failed for my husband? I did ask this of his onc and he says he believes it failed. By no means will I hold off on the T & T treatment...but is it fair to decare Yervoy failure b4 his 12 week and 16 week scans?  (I apologize if this post seems rambling)

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triciad's picture
Replies 6
Last reply 7/12/2011 - 4:34pm

Hi Everyone,

I hope that you all are enjoying the hot days of summer.  I am hoping someone out there can shed some light on my situation because this is where I have learned everything I know about melanoma.  I am so grateful for all of your wisdom and guidance throughout this journey.  I haven't met any of you, but I trust you like family!

My battle began 2 years ago, July 09.  I was staged at 3B.  Had 3 positive nodes in my groin area and complete resection of melanoma tumor from the center of my VERY lower back...top of my butt crack to be exact...sun never shined there!  Did a complete year of Interferon.  Last scans in Feb 11 - all clear.  Last oncologist visit May - bloodwork all normal.

On Saturday, I felt a small bump, like a mosquito bite, at the top of my left butt...same side as melanoma.  Felt like a marble under my skin.  Went to Urgent Care facility for some guidance.  Do I call oncologist, dermatologist, or surgeon?   Doctor said not to worry...it was a sign of aging,  melanoma develops at the bone and this was right under the skin.  I should go to dermatologist because of my history and for peace of mind.  Needless to say, I ran out of there so fast!

Yesterday, I went to dermatoligst who tried to excise it but couldn't.  She said it was too deep and moved during the procedure.  She immediately called my oncologist and surgeon, scheduling appointments with both,  Thursday I see my oncologist and Monday the surgeon.

Has anyone out there had a similar experience?  Does it have to be a sub-q or could it be something else?  Any advice would be greatly appreciated...thanks!

Sleeplessly yours,

Tricia

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We'll be hosting a patient symposium in Chicago, IL on October 1, 2011 if you are in the area.  The tentative agenda has just been posted.  Let me know if you have any questions!

http://www.melanoma.org/get-involved/1st-annual-chicago-melanoma-patient-symposium 

Shelby - MRF

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