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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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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Tracy Chicago's picture
Replies 4
Last reply 4/28/2011 - 6:12pm

Hi everyone! I just wanted to remind anyone who is feeling depressed or hopeless about melanoma that there are so many melanoma survivors out there beyond this board (but I do love the survivors on this board :)). Either they don't know about this website or they are just off enjoying life so they don't come here to post, but they do exist and they exist in masses!

I know several melanoma survivors (Stages 3 to 4) who have been around for 10 years of more after winning their battle with melanoma. They aren't people I've met through this board; they are people I met when I received my stage 3 diagnosis 3 years ago and I began that long journey of researching all the details about melanoma. It's hard to think positive, but remember that some lucky people do survive for a very long time and you just might end up being one of those lucky ones!

Hugs,

Tracy

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flynn's picture
Replies 1
Last reply 4/28/2011 - 4:57pm
Replies by: Anonymous

Has anyone heard of this place in the Bahamas? Any takes on it?

http://immunemedicine.com         - here's what they say..

"At the Immune Augmentative Therapy Centre we have been working to find the best therapies available to restore your immune function since 1977. Lawrence Burton Ph.D. opened the IAT Clinic in Freeport after his many years of successful research therapy in the USA on the immune systems of hundreds of terminally ill cancer clients".

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sharmon's picture
Replies 7
Last reply 4/28/2011 - 4:12pm

Brent and I are in Houston for MDA, and had the opportunity to spend time with Amy.  She looks and sounds great, we went out to eat and a little Easter shopping.  She is dealing with a lot of pain and gets tired, but she enjoyed getting out of the house.  Her battle has been long and she has had to be an  advocate  ( doing her own research work )as well as the patient, and a mom, while Dennis works,  not easy...... 

She is doing Hospice and finds that helpful.

She has found her peace and has a strong relationship with God, and takes one day at a time.

She finds it hard to get on the internet and doesn't know where her computer is so you may not hear from her very often. 

We met the kids and wow what a great family. 

I just wanted to give you all an update.  We will be here for 6 weeks and plan to see her again.

Brent and Sharon

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Alanfph's picture
Replies 8
Last reply 4/28/2011 - 2:48pm

I have had 2 melanoma findings in the past 3 months.  I have a teriffic doctor and he caught them early, both were Stage I (back and leg).  I went for my 2 month checkup and they found 7 moles that are suspicious.  Biops. were taken and I am waiting on the results.  They said this is very rare....but said no more then that.

 

Does anyone have any thoughts?

Thanks...

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I have had 2 melanoma findings in the past 3 months.  I have a teriffic doctor and he caught them early, both were Stage I (back and leg).  I went for my 2 month checkup and they found 7 moles that are suspicious.  Biops. were taken and I am waiting on the results.  They said this is very rare....but said no more then that.

 

Does anyone have any thoughts?

Thanks...

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Anonymous's picture
Anonymous
Replies 2
Last reply 4/28/2011 - 1:53pm

Can your health insurance cancel your policy if you move out of your state (just across the border) and the state would be NY

Thank you.

Insert Generic Inspirational Motto Here

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LampChop's picture
Replies 11
Last reply 4/28/2011 - 1:49pm

I've been looking for a cancer support group of young moms or young women without children.  I'd love to chat with others for whom a cancer diagnosis has halted their ability to start or grow their family.  Anyone on this board that is in a similar situation to me?  I'm 38, Stage IIIB with strong recommendations from many doctors to avoid becoming pregnant again (which I have decided to abide by).  I have a 2 year old daughter.

Kristin

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kbc123's picture
Replies 4
Last reply 4/28/2011 - 9:22am

My newly diagnosed melanoma (3a) is giving me a bigger headache!  Took my son to dermatologist for his "body check" because of his momma's diagnosis.  Doctor took two not so cute moles off, told me dont worry they are really nothing to worry about and to call in a week.

Dr. office calls last night and tells me that they are compound melanocytic nevus' and that he needs to be watched more carefully now.  Also that the only thing we need to do is watch the area and to make sure that no pigment grows back.  Does that sound correct to all of you warriors out there?  I am sick to my stomach about it however, thanking God that I am taking my kids for this yearly check up and catching whatever may be a problem.

I have a path report and can give more info if needed.  It does also say that the 'architectural growth pattern is compatible with dysplastic melanocytic nevus.  there is mild cytologic atypia of melanocytes'

 

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