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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Bruce Davis's picture
Replies 6
Last reply 5/2/2012 - 11:15am

Feel very fortunate to have been on zelboraf for 7 months. The largest nodule in one of my lungs went from 3.8cm down to 4 mm in about 4 months time. Been through the arthritis like feelings that went from L wrist one day to R wrist the next day, or L fingers to R fingers and other a joints that we're affected. The worst pain is in the balls of the feet called metatarsalgia or plantar dysesthesias as I've come up with by researching on the web and talking to the zelboraf nurses. A lot of running in the past and high arches in the feet I'm sure add to the problem. Get some relief from anti-inflamatorys and ice. Just putting a shout out to see if anyone has experienced this foot pain or has been able to beat it. Like to stay on my feet and continue working as long as possible.

Presently it's "Don't give up."

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bikerwife's picture
Replies 10
Last reply 5/2/2012 - 7:05am

Lynn finished ippi march 26. Had first scans april 11 they showed mixed results some grew some shurnk and some new ones. Dr said did not want to wait wanted to start zelbraf. We got meds in mail and was ready to start. I began noticing changes thing were shrinkin and some disappeared. Some were size of thumb now are size of peas. Went to Dr. Today he says ippi is. Kicking in and we don't have to start zelobraf yet.

God has blessed us and we give him the praise.

What God leads u to he will. Lead you through

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Sherron's picture
Replies 1
Last reply 5/1/2012 - 5:11pm
Replies by: Snickers60

Hi Everyone,

It's been a while since I have been back.  I will be walking in the Melanoma Walk in Dallas, Texas on May 5th in memory of my husband Jim Clevenger, and for ALL OF YOU WARRIORS still fighting.  3.3 miles around Bachman Lake.  It's a beautiful walk for a wonderful cause...Wish me well.

Take Care,

Sherron,   wife to Jim FOREVER

Profile under Sherron

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Anonymous's picture
Anonymous
Replies 6
Last reply 5/1/2012 - 1:25pm
Replies by: atcchris, Swanee, Janner, Anonymous, yoopergirl

I was wondering if anyone could please explain to me exactly what a subqutaneous tumor feels like? Is it small, like a pea? Hard? Can it move under your skin when you are messing with it? I'm not sure what is going on but I have something that is all of the above. Thank You.

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natasha's picture
Replies 1
Last reply 5/1/2012 - 12:52pm
Replies by: Linny

Hi! I noticed new freckle on my upper lip.

I have it for couple of months already.

I do not have freckles on my face ,so can it be new melanoma or I just scarring myself?

I even do not know how lip melanomas look like.

Does anyone had this expierence ?

Thank you

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Vermont_Donna's picture
Replies 9
Last reply 4/30/2012 - 11:08pm

Hi,

 I have been busy working and not on this board at all over the last few months. My recent oncology checkup (4/25) (PET/CT, labs, clinical exam and discussion) revealed no new melanoma anywhere so I am now 14 months NED! On a separate health note I did have a heart attack 4/2/2012 and was also diagnosed with "takot subo" cardiomyopathy. It is completely reversible. I will start 6 weeks of cardiac rehab on Monday. I was back to work the following week after my heart attack. My oncologist stated it has no connection to my history of melanoma. I am relieved to have no signs of melanoma as my oncologist said he would not be able to treat me so soon after a heart attack. I would need a few months to recover. I was sooooo happy to be NED for sure!

I wish all you fellow melanoma warriors success with your treatments like I have had with my treatment (yervoy). I am considered a complete responder with very few side effects. I have had numerous treatments before the yervoy without long lasting NED status.

On a somber note, I am saddened greatly to learn of our friend Boots passing away from this wretched disease.

From snowy Northern Vermont,

Vermont_Donna, stage 3a, NED, diagnosed in September 2006

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rlowe's picture
Replies 3
Last reply 4/30/2012 - 10:58pm

I have been stalking the board for 3 months now, getting much needed encouragement and info from my fellow warriors. I just received a troubling report from my last CT scans and would like some help deciphering the verbiage. a little background first: my first scan in July of 2011 showed a single 6mm nodule in my lung. Docs said probably nothing, just monitor it. October scan had no mention of it. My January scan report had no mention of nodule but found atelectasis. Now my April scan said no change in 1cm nodule, but the atelectasis had worsened and I have emphasematic changes. Here is the report:
"There is a 1 cm noncalcified soft tissue density nodule in the left lobe of the lung posteriorly with associated atelectasis. The soft tissue nodule is unchanged compared to the immediate exam on 1/17/2012, but is new since the prior PET/CT examination on 10/13/2011. The associated atelectasis has increased. I cannot exclude a metastatic deposit. No other pulmonary nodules are appreciated. There are no acute infiltrate seen. There appears be some mild emphysematous changes of the lung apices. There is no pneumothorax or pleural effusion. There is no appreciable axillary, mediastinal or hilar adenopathy. The heart is not enlarged. There is no pericardial effusion. The thoracic aorta maintains a normal caliber without aneurysm formation. The great vessel takeoffs are patent."
My research nurse said not worry about it.
With all the knowledge out here, can anyone give me an explanation. Thanks in advance for your help.
Stage 3b in Georgia. Please check out my history and profile.

RLowe

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big ed's picture
Replies 1
Last reply 4/30/2012 - 7:22pm
Replies by: Kelly7

Hello, I am / was participating in the recent NIH study on Yervoy for high risk stage IIIC. 

One of the laundry list of side effects said  "Rare (but serious)  lower bowel obstruction".    I received the 100 mg drip every 3 weeks for 4 treatmeants.

Well, that's exactly what happened to me - started with diahrea for a week and went to emergency room with belly pain  - was in hospital for 28 days - yup 28 days - like a bad dream.

Had the operation and of course complications where "something burst".  Anyway home now and on wound vac for don't know how long.  Seems like it's one thing after another - didn't know there wound be a month or longer of wound care.

Originally, had melanoma in chest in 1986 (25 yrs ago) and it came back in November 2011.  Had 30 lymph nodes removed with 6 showing activity.

Can only home that with cutting them out - gives me 25 more years....   And that my set back in the study can be used to "help" someone else beat this thing.

have fun

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Here's what I got back today....

 

Compound nevus w/ architectural disorder and focally severe cytological atypia.  The lesion extents to the lateral and deep margins.  This lesion has severe atypia and it does not appear that it has been completely removed, conservative excision to ensure complete histologic evaluation to exclude an adjacent melanoma is recommenced.  Histologic sections are of skin w/ a nevomelanocytic lesion.  The lesion has junctional and intradermal elements.  Junction cells are present singly as well as in nests.   There is a lentiginous proliferation of melancytes along the dermoepidermal junction.  These cells have focally severe cytolgoic atypia.  In the dermis are nevomelanocytes w/ maturation.  Also, in the dermis there is a mild inflammatory cell infiltrate composed predominantly of lymphocytes and there is fibroplasia. 

 

What does this mean?

 

Thanks!

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Bob B.'s picture
Replies 25
Last reply 4/30/2012 - 1:31pm

Hi,  Will try to avoid sticking my foot in it- as I have with some previous posts under "Overtreatment?"....  First primary, a "lentigo maligna melanoma", was excised two years ago.  No recurrence- that I am aware of.     Second primary "superficial spreading malignant melanoma" I've been tracking 8 months, located 20 cm from the first primary, was excised three days ago.    Pathology received today is neither entirely innocuous nor very serious. Breslow, mitotic rate and Clark are all "ok" or better.

QUESTION:  What are "adequate margins", given the diagnosis/description below?  ("very close to the lateral margin...very narrow margins..narrowly excised")

DIAGNOSIS:  "Malignant Melanoma, 0.74mm Breslow's Depth, Clark's Level III.   The lesion has been completely excised, although it extends VERY CLOSE TO THE LATERAL MARGIN.

DESCRIPTION:  There is an asymmetric proliferation of atypical melanocytes arranged in nests and singly at the dermoepidermal junction as well as above it, with extension into the papillary dermis.  The lesion measures 0.74mm in depth and would be classified as Clark's level III, as the papillary dermis is filled and expanded.  There is pigment deposition throught the lesion.  There are less than one mitoses per millimeter squared.  There is brisk tumor infiltrating lymphocytic inflammation.  There is no evidence of ulceration or lymphovascular invasion in the sections examined.  The findings represnt superficial spreading malignant melanoma, which has been completely excised, albeit WITH VERY NARROW MARGINS.   One of the sections also shows small nodular masses of basal neoplastic cells with nuclear pleomorphism attached to the basal layer and surrounded by a loose fibrous stroma and mild inflammation in the superficial dermis, findings typical for a superficial type of basal cell carcinoma.  This has also been completely, BUT NARROWLY, EXCISED.  

Surgeon's recommendation:   Re excision, increasing margins by 1 cm each side.

I requested of pathology:  Quantified definition of "VERY CLOSE TO THE LATERAL MARGIN....NARROWLY EXCISED....VERY NARROW MARGINS".

Response to "Overtreatment?" post was overwhelming.  And enlightening, particularly from Janner, JerryfromFauq and Minnesota.  Many thanks!   I would much appreciate your opinions about "Margins?", in light of the pathology.   Thanks very much!  

 

The Only Good Legend is a Dead Legend.

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Lauri England's picture
Replies 2
Last reply 4/30/2012 - 12:13pm
Replies by: Swanee, Bonnets

Well things have been going pretty good.  I once again have a CT scan coming up Friday.  I had been doing really well with not stressing about it until today.  All of the sudden it hits me.  I am trying so hard not to worry especially since I've had pretty good scans up to now.  The crazy thing is I lost my support, husband, and now I have to do these things alone for the 1st time and do not want to.  No one is around on that day.  i even thought about re scheduling.  Not sure what to do right now.  Just know for sure I don't want to go alone...

Don't sweat the small stuff. There are bigger fish to fry!

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Lisa13's picture
Replies 16
Last reply 4/30/2012 - 9:15am

I just finished my last ipi reinduction.  I'm had a brain tumour, but lately have had eye problems.  Mine is basically blury and colour. Are these normal problems with people who've had ipi? What perscriptio do they give you? 

So far, the large brain tumour with blood is stil there and hasn't moved in 13 days.  I'm off to Florida tomorrow with so mucy perscriptions just in case. The brain tumour hasn't moved, so I'm hopefully, I want to be abe to enjoy the trip.  More than anything, it's the eye problems.

Lisa

Many impossible things have been accomplished for those who refuse to quit

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acyr's picture
Replies 6
Last reply 4/30/2012 - 7:40am

Hi all,

I has been some time since I have posted on this website that was so helpful in supporting me through my last round of this disease.  I have since been up to my elbows working to get our Canadian organization off the ground.  I would say we have made great progress www.melanomanetwork.ca

There is a patient who is looking for help.  She is in her 40's, has spread of the disease widely with high concentration in the liver.  Was wondering what any of you might suggest for clinical trials that have been effective on liver mets.  Is anyone still doing hepatic infusion with any success?  Have any of you had successful treatment or regression in the liver?  I believe she has failed Zelboraf (vemurafenib) and is starting Yervoy tomorrow - but Yervoy may be too slow to respond in light of her rapid progression.  Any thoughts are very welcome.  Wishing you all a bright tomorrow.

Annette IIIB

Melanoma Network of Canada

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Replies by: davekarrie, Angela C

Hello all,

Just a bit about my history.  Was diagnoses with a 1.5 mm Mel, back in Nov 2012, 1 microscopic node in sentinel, then 42 lymph nodes removes from under left arm, still numb under there but doing very well overall and currently NED!  I follow this site and kudos to everyone fighting this disease with all they have, and to everyone on this site that helps everyone out, it is truly a great resource and helped me soooo much when I was diagnosed!

Onto my post question.  I have a team for Relay for Life event in Grand Forks, ND on June 1, and have a few questions on Mel outreach.  i want to have a posterboard on Melanoma facts,. and was wondering if anyone knows how best to go about doing this.  I can create it, but didn't know if there were other resources I didn't know about.  I also want to get some sunscreen samples to giveaway at the event, and was wondering if anyone has done this and what company to contact perhaps? 

Thanks for any help, and have a great weekend everybody!

Live life to the fullest and enjoy each day! #noonefightsalone

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Dgentz's picture
Replies 6
Last reply 4/29/2012 - 8:27pm

Monday I go in for IL-2. I just wish I knew what to expect, but I think I am well prepared thanks to this place.

I had a PET scan and an MRI last Wednesday, so we have current scans, too.

I guess I'm ready!!

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