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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Anonymous's picture
Anonymous
Replies 1
Last reply 5/1/2011 - 5:32pm
Replies by: MichaelFL

Hi Everyone,

 

I am scheduled for surgery to remove a tumor in a few weeks.

 

Has anyone frozen their tumor & if so, how did you use your frozen tumor at a later date( ie genetic testing, vaccine, etc.)? Was there a costor fee for freezing the tumor & for storing it.

Thanks for your input.

 

Jan

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Jan in OC's picture
Replies 16
Last reply 5/1/2011 - 5:20pm

Just got back from UCLA with my husband.  Got the latest CT results after the 12 week IPI Trial.  All results point to Non-response.  Scans were compared to previous scans in Jan '11 and Dec '10.  Here is the technical stuff!  Hard to read.......

CT of Ab and Pelvis:  "interval worsening of hyperattenuating hepatic lesions.  In addition confluent gastrohepatic, peri celiac, and portacaval nodal densities appear larger.  New splenic lesions are seen.  Left lobe now 4.3 x 4.1 cm, was 3.8 x 4.4 cm.  Caudate lobe now 3.6 x 4.8 cm, was 15 x 19 mm.  Right iliac lymph node now 2 x 2.2 cm, was 17 x 19 mm.  Final Impression: Progression of hepatic metastases, and nodal metastases.  New splenic metastases".

CT of Chest:  "Interval enlargement of multiple thoracic lymph nodes.  interval enlargement of multiple , at least 8, soft tissue nodules within the thoracic chest wall with at least one new nodule see.  Interval increase in size and number now numbering in excess of 100 pulmonary parenchymal micro and macro nodules.  Focal point of peribronchovascular involvement is seen within the left upper lobe concerning lymphatic involvement.  Right paraesophageal lymph node now 16 x 15 mm, was 9 x 7 mm.  Right lateral chest wall nodule now 22 x 17 mm, was 15 x 14 mm.  Left lower lobe now 14 x 13 mm, was 8.3 x 8 mm".

"Multiple thoracic vertebral body lesions with compression fractures of T8 and T5 with patency of spinal canal.  Height loss of the T8 vertebral body associated with interval development of multiple lytic lesions within the T5, T6, T9 vertebral bodies.  Final impression: Interval increase of pulmonary nodal, chest wall metastases.  Multiple vertebral bone metastases with compression fractures of spinal canal"

Basically lots of big words to say he is getting worse and this nasty disease has now spread to his bones. All I gotta say is #$%&@#$%&*!!!

Doc is now worried that the Brain mets may be reappearing, so moving up the timeframe on the MRI.  Very few options offered to us right now. We are  feeling a wee bit depressed.  Just can't get any good news!  Waiting on MRI to figure out what we can do next.

Jan, wife to dirk

laughter is the best medicine

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kathywal53's picture
Replies 1
Last reply 5/1/2011 - 4:16pm
Replies by: MichaelFL

My husband, Chuck, was diagnosed with stage three Melanoma in 2004. He rec'd treatment in Goshen, Indiana at Goshen Center for Cancer Care.

He underwent 5 treatments of IL-2 as well as radiation therapy and of course surgery to remove the tumor on his leg. Chuck wrote and self published

a book called, Almost Always Fatal-Surviving Cancer with a Sense of Humor in 2007. I recently launched a website where you can read about

Chuck and his journey through this terrible diagnosis and how he coped with the years of treatment. I invite anyone who has been diagnosed or knows someone who is facing this very aggressive form of skin cancer to read his book.

The website is www.almostalwaysfatal.com

 

Thank you and God Bless.

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Rendergirl's picture
Replies 3
Last reply 5/1/2011 - 3:00pm

Hi everyone,

I want to write here of my experiences so far because it is so helpful to those who are just going through it, and you all have helped me so much, but I am only a few days post-op and still healing. I will write more later, and/or try to answer questions for those who want to know my experience. But right now I do have another question.

As I said, I had surgery on Wednesday to remove all lymph nodes in my right arm. They sent me home with a drain, and a compression bra on. It's important to note that the compression bra has been on since my initial wide excision of my mole site on my upper chest a few weeks ago. But I don't know if they put a new one on me because of my chest incision, which is still healing, or if it has something to do with the lymph node surgery and keeping lymphadema at bay. I took a shower today and changed my dressings and my incision site under my arm looks good, and I took the compression bra off. I don't know if I need to put it back on or not. Simple question, I know... but I will do anything to keep lymphadema from happening. Anyone have any info on this??

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My husband, Chuck, was diagnosed with stage three Melanoma in 2004. He rec'd treatment in Goshen, Indiana at Goshen Center for Cancer Care.

He underwent 5 treatments of IL-2 as well as radiation therapy and of course surgery to remove the tumor on his leg. Chuck wrote and self published

a book called, Almost Always Fatal-Surviving Cancer with a Sense of Humor in 2007. I recently launched a website where you can read about

Chuck and his journey through this terrible diagnosis and how he coped with the years of treatment. I invite anyone who has been diagnosed or knows someone who is facing this very aggressive form of skin cancer to read his book.

The website is www.almostalwaysfatal.com

 

Thank you and God Bless.

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shellebrownies's picture
Replies 15
Last reply 4/30/2011 - 7:17pm

We're about  4 weeks out from Don's biopsy/lymphectomy and this morning he got up and his right arm was swollen. He said he was a bit more sore than normal also. It's important to note that he is not yet receiving any treatment for the Melanoma because they are still staging him. (He goes for repeat PET on Friday 4/29 and his next Onco appt is Friday 5/6)

He just saw the surgeon last Friday because he was having on and off bouts of increased pain. Surgeon had said everything looked good, no sign of infection, and he removed the rest of the Steri Strips, which did seem to help with the pain. We thought everything was moving along fine.

We called the onco, who thought after talking with my husband that it is most likely Lymphedema and we should look into getting him a compression sleeve. The surgeon's office is getting back to us in the morning about it, but the surgeon didn't seem too concerned (not concerned enough to have him come back in).

My questions are these: How do we know if that's what it is? What are the common symptoms (other than the swelling)? What can we do to make it better/go away? Is he going to be stuck like this forever and will it affect other possible treatments in that area? Will it affect his PET scan on Friday if it's still swollen?

Any information anyone can give would be very much appreciated. Thank you!

 

Michelle, wife of Don, Stage IIIC (for now)

Gonna stand my ground, won't get turned around, And I'll keep this world from draggin' me down; Gonna stand my ground and I won't back down. ~Tom Petty

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EmilyandMike's picture
Replies 4
Last reply 4/30/2011 - 5:36pm
Replies by: Tim--MRF, mommydog, Napa K

I was just wondering if anyone was attending the May 4 event in San Francisco.  My husband and I will be attending.- I look forward to meeting you if you are.    

http://www.melanoma.org/get-involved/wings-hope-san-francisco

Thanks

Emily

Our experience with melanoma: http://emandmichael.wordpress.com/

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Jim in Denver's picture
Replies 8
Last reply 4/30/2011 - 4:37pm

How long after beginning to take a MEK Inhibitor should it take before results are seen (is there is any effect)?  I am taking Eisai 6201 at The Angeles Clinic, and have conpleted one cycle (6 infusions over 3 weeks, with this week off).  Tumors have increased in number and size.  Scans willl be both CT and MRI.  The Doc mentioned the possibility of doing early scans.  Should I wait for the schduled scans at 8 weeks or ask for early scans?

Also, any information about the BRAF trials for non 600E tumors and Brain mets (2 seperate trials)?  My Doc says I would be eligible for these but that they are not open yet - maybe in a few months.  Not sure if that is accurate, so feedback is appreciated.

Best wishes to all.

Jim

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joy_'s picture
Replies 24
Last reply 4/30/2011 - 3:23pm

Subject line says it all.  I am sure there have been many discussions on interferon here, but I'm interested in hearing everyones personal take on it.  Bill is going to start the 4 week high dose treatment this month.  We're not happy about it, but he feels like if he doesn't try it and mel shows up again he'll regret it.

Tracy

wife to Bill, stage IIIc

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heg50heg's picture
Replies 7
Last reply 4/30/2011 - 10:31am
Replies by: Lauri England, Vermont_Donna, MichaelFL, ockelly, King, Anonymous

Hello , I have just finished my 1st month of high dose interferon treatments. I will see my Dr.on Monday of next week and start the shots foe 11 months. It went well except for the 3rd week when I got really dehydrated and had to spend 3 days at the hospital getting fluids. The Dr. tells me the shots will be easier as there only half as strong but I am skeptical on that as the side effects from the treatments were about all I could handle. The headaches were just about unbearable and I was sent for 2 more brain skans during the last month, and they were both negative. I just feel like one of these times I wont get so lucky. Has anyone had their cancer spread while on Interferon.

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DebC's picture
Replies 12
Last reply 4/29/2011 - 1:07pm

 

This is my first time posting on the bulletin board.  I have read many of your conversations over the past 3 months and so have already benefited from your knowledge, guidance, compassion, and spirit.  I am very grateful for your generosity and your support already.  I am finally posting today with some questions and concerns about getting through interferon but here’s a bit of background first.

 

I am the wife of a very dear 60-year old man who was diagnosed with melanoma in December 2010.  He had surgery for a very large lesion on his back on December 10th that his primary doc had, unfortunately dismissed 2 months before.  His cancer has been staged as IIC; the thickness of the tumor was 32 millimeters (yes, you read that correctly) and it was ulcerated.  We were greatly relieved that he had clear PET and brain scans but they were unable to do a SNLB because of the size of the surgical wound on his back.   After sufficient recovery from the initial surgery he had a skin graft in January to complete the healing.  Our medical oncologist here in Maine referred us to the melanoma clinic at Mass General where we saw Dr. Lawrence and his team.  As you all might imagine, the recommendation was a yearlong course of interferon, given the ‘worrisome’ nature of his tumor.

He completed the 4-week, 20-day marathon a week ago Friday at the Alfond Cancer Center here in Maine and, as so many of you know, the fatigue was beyond what we could ever have imagined.  After the second week there was no ‘bounce back’ over the weekend and he essentially stopped eating; he had no appetite and lost his taste for food.  It was a very hard month, to say the least but we’ve found this past week to be almost more discouraging and disconcerting.  The exhaustion has continued (he started the 3x/week injections last Monday); he has had no appreciable gain in energy until perhaps today.  His appetite has returned a bit but, for a man who loves all sorts of food, he is being very careful in what he tries to eat.  He wants to return to work – an administrative job – but is wondering how he’ll ever get through a day – or even half a day.  We have felt confident about the decision to go ahead with the interferon treatment but the year ahead looks very bleak at the moment.

So, we would appreciate any advice on how to get through the long haul of interferon – what to expect and what has helped you or your loved ones with the fatigue, appetite issues, and anything else.  We are also concerned about what to watch for as the weeks and months go on – as we are ever worried about where this nasty disease might be lurking.

Thank you so much.

Deb C

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shellebrownies's picture
Replies 5
Last reply 4/29/2011 - 11:24am

Hey all,

Is it normal to take a month or more to get a proper staging and treatment plan? The waiting and lack of knowledge is driving Don and I insane! He has had the melanoma diagnosis since the 1st and we probably won't have an answer on his stage until at least May 6th. 

Why this drives me insane: Dr. Ibrahim told us at our appointment 2 weeks ago that because Don's mel was found to be extracapsular, it put him at a higher risk of reoccurrence. She also said she had some concerns about how quickly everything blew up under his arm and thought that might indicate a more aggressive form of cancer. YET... she scheduled the repeat PET scan 2 weeks later and our next appointment with her for 3 weeks later! When I questioned her about that, she said Don would have to have time to heal from the surgery before treatment could be administered anyway.

The original PET scan he had done on the 7th appeared to have a hot spot in the right shoulder that it was believed indicated more infected lymph nodes as well as an area of suspected activity on the left side of his neck. They are having him repeat to find out if the neck area lit up was an anomaly (like a sore throat or something) or not.

I understand that it is extremely important for them to know Stage IV vs. Stage III, but does it really need to take this long? Meanwhile, Don has had no treatment all this time and that makes me very nervous that he'll end up Stage IV just from all their waiting to start treatment!

Help me not to freak out, please. Thanks!

 

Michelle

Gonna stand my ground, won't get turned around, And I'll keep this world from draggin' me down; Gonna stand my ground and I won't back down. ~Tom Petty

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Anonymous's picture
Anonymous
Replies 1
Last reply 4/29/2011 - 10:11am
Replies by: King

Well this past Tuesday Brent started his new MEk trial at MD Anderson.  He was on  GSK Mek for 14 months and started to progress.  So after a mistake in the insurance approval, and not getting the right information about B-12 and folic acid prior to starting the trial, he finally started.  He is on MEK/Alimta combo trial.  Alimta is a drug approved for lung cancer that they are combining.  He feels well today but is sleeping more than usual.

Sharon and Brent (stage IV)

2007 Melanoma under toe nail and lymph  nodes in groin

2009 Stage IV in lungs

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Erinmay22's picture
Replies 9
Last reply 4/29/2011 - 2:17am

March 1stI had melanoma confirmed in my lungs.  For the last 6 weeks I’ve been trying to get qualified for a B-RAF trial.  The good news is that I found out (thru a whole list of waiting and errors) that I am + for the mutation, but my April scan didn’t show enough “active measurable growth” to qualify for the trial.  Now I know I should be doing some sort of happy dance for that statement – but I guess my guard is still up!   

So now I am back at square 1 (again…) What do I do for treatment?  My doctor even suggested maybe watching and waiting since it appears that most of my lungs spots have just disappeared?  Were the rest of them maybe an infection and the 2 out of the 12 they biopsy just happen to be melanoma?  Or is it that my body is fighting it?  It’s so confusing… and now I sit and wait again.  Perhaps they will try Ipi/Yervoy?  I don’t see my doctor for a few weeks.  My scan results are listed below as information 

4.19.11 Scan: Lungs – Status post left upper lobe and left lower lobe wedge resections of pulmonary nodules, biopsy-proven to represent metastatic melanoma.  There has been interval resolution of all additional subcentimeter pulmonary nodules, with the exception of a 3 mm right basilar lesion, and a subcentimeter right basilar granuloma.   

Everything else was listed as stable from my previous scan with the exception of new small bilateral adnexal cysts and stated no new evidence of metastatic disease. 

1.13.11 Scan: Lungs – all stable scattered subcentimeter pulmonary nodules are identified most of which measure 0.2 to 0.3 cm.  The largest seen posteriorly at the right base measuring 0.4 cm.  Calcified granuloma right base lung.  Impression states: multiple bilobar scattered subcentimeter pulmonary nodules.  Although there is evidence of prior granulomatous disease within the thorax and some of the lung nodules may be related to this process, the multiplicity (my doctor stated there were over a dozen spots!) of nodules raises concern for metastasis.   

 

Thanks,

Erin

www.melanomaandthecity.blogspot.com "people will forget what you said, people will forget what you did, but people will never forget how you made them feel' Maya Angelou

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Shelly in Switzerland's picture
Replies 4
Last reply 4/29/2011 - 2:11am
Replies by: Kim K, Phil S, Cate, lhaley

I have been so out of it for the past month.  bedridden, throwing up, double vision, siatica nerve in bsck snd neck with seizures.... 

Anxious for changes!  This week everyday there have been imptovments.  Today I sat at the dinner table with my family!  a major triumph!

MRI showed radiation it has shrunk the 2 large tumors. No new growth on the chest tumors from before.   Now we wait for a month and see if more it dies, ince I am seeing healthy improvements now.   (Last 4 days I have seen improvements with my left side!)

 Today has been another successful day!  Whoa!  A trip in the car to the doctors appt, sat at the dinner table for the first time in a month with my family; and George, Dad, and Lisa, along with our friend Alwyn helping interpret a tour of the Lukas Klinik and a Hospic im Parc facility in Arlesheim (all just trying to learn about options… but after today’s news not necessary for awhile.

 Today’s’ plan is that we will wait one month, stay on the Braf, reduce steroids, start the Linac (STS radiation), wait for more shrinking… then try the Iplimumab ( Yervoy).  Lots of investigation still to do...

 

 

  

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