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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Pennie Jo's picture
Replies 6
Last reply 4/14/2014 - 5:45pm

Anyone experienced fever while taking Mekinist/Tafinlar? My sisters fever spiked to 102.6 and wouldn't come down - called doc said it is a side effect of the chemo and a possible sign she won't be able to tolerate this chemo. Had me give her decadron (steroid) for the fever. So far it is bringing her temp down. Doc told us to not give the evening chemo dose - we see her oncologist on Friday. Just wondered if anyone else has experienced this - just so afraid the fever is from something more!!?? 

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Anonymous's picture
Anonymous
Replies 9
Last reply 4/15/2014 - 4:05pm

Hi 

Was wondering whether the stage v members of the group could answer me some question. 

1. How long have you been stage 4?

2. Where did metastics spread to  (dont have to answer if too personal)

3. What treatments have you been on and were they successful? especually interested to know about anyone on pd1. 

4. . have  you continued to feel well after you diagnosis - carry on working etc? 

Thanks 

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jae p's picture
Replies 7
Last reply 4/13/2014 - 12:24am
Replies by: Kim K, jae p, Anonymous, SABKLYN, washoegal

Hello, everyone!  It's taken me some courage to post here and embrace the fact that I have/had melanoma.  Funny how it's taken me so long to accept it.

Last month I went through the whirlwind of diagnosis (stage 2a... ulcerated...mitotic rate 2) and WLE and SNL surgery.  All was clear, only good results.  I wrangled a good melanoma specialist for those check-ups they recommend, and I'm going to begin seeing her in two weeks.  I have no idea what the visits entail.

I accidentally saw 2a's survival statistics, and have also read the way people frame melanoma when they discuss it, as though it's only a matter of time until the next recurrence, until it gets worse. Since I'm of course worried about this, it's very difficult to just carry on with my life despite my (current?) good news.  I hope the anxiety will pass, but more than that I hope what I'm gleaning from what I read doesn't have to be true for everyone.  I'm very scared. :(

Thank you for listening. I admire this community for all its resiliency and empathy for one another. It's really wonderful!

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BrianP's picture
Replies 5
Last reply 4/11/2014 - 5:32pm

On my last CT scan I had some thickening of the small bowel (site of previous disease) which was "concerning for worsening metastatic disease."  I did a petscan a few days ago and the scan showed no FDG uptake at the area of concern in the small bowel.  Of course that was a huge relief!  The other part of the report that I found very encouraging was that the two original nodules continue to be stable but more interestingly show no FDG uptake.  A small nodule in my lung shrank from 5mm to 2mm in 3 weeks and also shows no FDG uptake.  Essentially there was no FDG uptake anywhere.  Has anyone experienced anything like this with petscan reports before.  Can any assumptions be made about the tumors at this point?  Of course I would like to assume they are "dead" but I'm not sure you can make that assumption at this point.  Any similar experience or knowledge would be greatly appreciated.

Brian

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Leslie'sHusband's picture
Replies 2
Last reply 4/10/2014 - 6:54pm
Replies by: Bubbles, BrianP

Les is scheduled to have her "minimally invasive" (laproscopic) lymphadectomy of the left groin on Tuesday.  Turns out the delay in getting the path diagnosis from Duke was due to local hospital dragging their feet in sending the slides down to Duke.  Once received, we had our phone call the next day.  Duke will also be doing an ultrasound of her left ovary on Monday to make sure that the hot spot on the PET is nothing serious.  Local Docs already looked at it and deemed it nothing abnormal, but Dr. Tyler at Duke wanted another look.  Pray that the results will come back clean, and no further spread to the other lymph nodes.

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Tina D's picture
Replies 13
Last reply 4/11/2014 - 2:25pm

I am thankful to say that my scans this week remain stable. Going into the scans they told me I have had an 80% response, so that is where I gratefully remain. I am aware many are currently struggling, and I have lost a dear friend in the past month to mel. Just posting as an encouragement for all.

Will be seeing an endocrinologist next trip to Vandy to try to get my thyroid and adrenal situation balanced out, but I feel very well & only symptom really is fatigue. I think the fatigue is largely endocrine related issues.

Hopefully this will be approved soon so everyone can have access.

Tina

 

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Les is scheduled to have her "minimally invasive" (laproscopic) lymphadectomy of the left groin on Tuesday.  Turns out the delay in getting the path diagnosis from Duke was due to local hospital dragging their feet in sending the slides down to Duke.  Once received, we had our phone call the next day.  Duke will also be doing an ultrasound of her left ovary on Monday to make sure that the hot spot on the PET is nothing serious.  Local Docs already looked at it and deemed it nothing abnormal, but Dr. Tyler at Duke wanted another look.  Pray that the results will come back clean, and no further spread to the other lymph nodes.

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Replies by: clusterfoo, Patina, SABKLYN

Hey, so at the beginning of this year they found my primary in my scalp. About a month ago I had a skin graft and sentinel lymph node removed from the back of my neck.

The lymph node (which was large enough that I discovered it myself) came back positive. Since the surgery (it's been about a month), they found a new lump right under y ear. This was not there immediately before the surgery and is now large enough that I can see it in the mirror.

My surgery is to be scheduled in about a month.

Some questions:

* It feels like a whole month is a really long wait, considering this new lump came in so quickly. Should I be pushing for a sooner date, or is this normal?

* I am being treated at the Princess Margaret ENT Clinic in Toronto and have so far met the surgeon and a radiattion therapy Dr., should I be looking for a melanoma specialist in the Toronto area? Should I have met with an oncologist already? What information should I be asking for?

I had already spent a year walking around with these tumors because both my family doctors  and the walk-in clinic I had asked told me they were "nothing to worry about," until I demanded to see a dermatologist and to have the lump biopsied; so I'm not comfortable just sitting back and waiting if there's something more that can/should be done.

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Anonymous's picture
Replies 12
Last reply 4/10/2014 - 5:06pm
Replies by: Aussielyn, Tina D, Linny, Anonymous, Thandster, mau, momof4boys

Hello. I am two months removed from a left groin lymph node dissection. I wear a compression stocking every day, elevate my leg when it feels tired and often when the stocking is off at night, will use a wedge to elevate my leg further.

The lymphedema specialist I am seeing says my leg looks very healthy. It is still early to determine if I have any sign of the beginning stages of Lymphedema. My left leg compared to my right (from my ankles to my upper thigh) are within 3 cm or less of one another.

For those who had the groin dissection, is the compression stocking a permanent item to be worn 24/7 or has anyone been able to find proper management to where they can go without the stocking or to something a little less conspicuous like a compression sock? I understand there is no reason to wear one while I'm working but I certainly would like to spend my free time without one.

The second question is this. We've recently purchased a hot tub, mainly to provide relief to our tired muscles and backs. Has anyone with the dissection told specifically NOT to use a hot tub. I've had mixed opinions from medical experts, some say it should be fine, some say avoid it like the plague. Has anyone here used them since their dissection? Experiences?

thank you

 

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Teochasse's picture
Replies 6
Last reply 4/10/2014 - 1:57pm

Some folks might remember me  from when I was looking desperately for a  treatment advise on  this board back in 2011 .Fot those not aware of my medical history,I was diagnosed with Cervical Mucosal Melanoma in  June 2010 after a profound vaginal bleeding and lifesaving hysterectomy.I've had radical lymphadenectomy /nodes came back clear/ in September 2010 and local re-occurence in May 2011.

If you think that melanoma is the worst cancer you can be diagnosed with,then figuratively speaking, I was diagnosed with the Queen of all Melanomas. 

Cervical Mucosal Melanoma is an extremely rare and aggressive neoplasia with less than 100 women in the world diagnosed with it.Local and distant metastases with MM occur in the span of up to 24 months.The overall survival rate of this disease is less than 19%.That means that less than 2 women survived this cancer.Ever.

Guess what?

After my last PET scan/pap smear as of 2 weeks ago, not  only I am still  alive and kicking,but to the utter dismay of my Doctors,  I am still NED.

I AM  that one person who survived against oll odds.

My Doctors call me a Walking Miracle.

Do I feel the luckiest person in the World?Absolutely.Yet I am not here to brag about my good fortunes neither  do I intend  to be unsensitive to the fellow  warriors waging their brave battles against this beast of a disease. I am so sad for all the people who lost their battles with this horrible cancer in the last 3 years.

I am here  posting this  to  deliver a message of hope and encouragement.

Do not EVER lose hope.It is not over untill it is over.You are an Individual and you have every chance of beating this disease as long as you live.Nobody can tell you how much you have left-because you  might well  have  your  whole life ahead of you.A lots of sunsents,and dawns ,and sweet  Far Nientes  /nothing doings/ .....

I personally intend to die of old age.With grey hair,wrinkles  and with vivid happy  memories.Not now,not  in pain ,not in anquish,not like that.It is not an promise-it is a resolve.

Don't stop believeing in miracles.That miracle could be YOU.

 

 

Teodora Chasse

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michaelinsocal's picture
Replies 18
Last reply 4/12/2014 - 2:29pm

Hello everyone. Forgive me if this topic has been asked before. I am scheduled to undergo Interferon Alpha treatments next month.

it will be a 12 month program, 4 weeks of beonh given the drug through IV and 11 months of self injected shots. 

Ive done quite a bit of research and understand the side effects from the most common to the severe. I'd like to get feedback as well as any advice on how to deal with it initially and any helpful tips to survive the entire 12 month process.

i am planning on returning back to work, however just part time and claim partial disability until I can work myself back up to a 40 work week. I work retail grocery and being on your feet for 9 hours a day will be a challenge.

 

thanks in advance. Any feedback is appreciated.

Michael

 

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Aundrea's picture
Replies 2
Last reply 4/10/2014 - 8:57am
Replies by: Tina D, tcell

I know some of yall read and replyed to my husband being newly diagnosed for melanoma at the first of march.  I still dont have a stage on the cancer yet.  Not sure if thats determined after all the testing or what.  Anyways, he did blood work and chest xray on monday.  Bothe were clear with no sign of melanoma.  On the other note, his cholesterol was high and blood glucose was high as well as tryglicerites.  So now we follow up with primary for meds.  Pretty sure he will be diabetic after more testing since it runs in family.  Now all we have left is the PET scan!!  Follow ups with the derm once and month and not sure about oncologist yet.  Im finally seeing some light at the end of the tunnel.  With the biopsy showing clarks level 4 and close to 1.9 breslow (I thinks thats the finnal reading we got), I just felt like we would get bad news from his test.  But thank you Jesus for the good news!!  We will beat this cancer and now we are headed for a heart attack and diabetes but thats curable!! Stay positive friends!!! 

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holdthresh's picture
Replies 3
Last reply 4/9/2014 - 2:45pm
Replies by: Anonymous

Does anyone know of melanoma support groups in Chicago or Chicagoland?

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Here is a link that you can look up your doctor(s) to see how much Medicare paid.

 

http://projects.wsj.com/medicarebilling/

 

 

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I know what a horrible battle you all fight. It gave me so much strength when I would come here and read your stories. This board kept me from losing my mind while my husband battled a Stage 3C and then Stage 4 agressive Nodular Melanoma diagnosis and treatment. I was a 39 year old mom with two little daughters when this entered our lives.

There is hope. And there were always people who came back here and posted to give others hope. After diagnosis, 3 surgeries that included a massive facial skin graft and over 70 lymph nodes removed, radiation, a year of interferon and many years of monitoring and scans my husband is still alive. I now say he is "living with cancer"

It was scary to log in and see these postings again, and I often wonder if posting this is asking for trouble from the evil cancer demons. 

It is my deepest hope that you get through this too, and live....no thrive....after this nightmare. 

Much love and appreciation for all that post here. You saved me in my darkest hours. I hope I can give you a thread of hope this evening.

 

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