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.

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I'm still reeling from results I received late yesterday. I'm a 47 year old female who sees a Dermatologist twice a year for prevention. I had a trauma several months back and a thoracic x-ray showed what they thought was fluid. Well long story short it was not. I'm reaching out on any suggestions, recommendations that anyone may have. Thank you.

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I'm still reeling from results I received late yesterday. I'm a 47 year old female who sees a Dermatologist twice a year for prevention. I had a trauma several months back and a thoracic x-ray showed what they thought was fluid. Well long story short it was not. I'm reaching out on any suggestions, recommendations that anyone may have. Thank you.

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himynameiskevin's picture
Replies 13
Last reply 8/6/2012 - 7:56pm

Hi all,

Sorry for the delay, and the length, but here's the latest..

I had an MRI on the 23rd that showed new/growing tumors in the head, none over a 1 cm. A day or two later I noticed a lymph node in the groin was swelling, this same one appeared around the same time of brain tumors in Jan/Feb. It completely went away after starting Zelboraf, not even showing on a PET scan. It's weird to me that the same one, same spot, came back now, same time as my brain is under assault again... maybe there's a correlation?

I had a "detailed MRI" yesterday, for a clearer picture, and preparation for more SRS or WBR. But no call from the doc. She and I have always had an agreement that'd she calls me the day of the scan to update, whether good news or bad, she always has. But not this time, I'm really hoping it's just because theres not really any change from this scan and the last.

I finally, got my PET scan scheduled for Monday morning, it's a little upsetting it was ordered over a month ago and should've been done weeks ago. But people make mistakes, and the milks been spilt I guess.. moving on.

As I have progressed I have been on and off of Zelboraf since the 23rd. Due do different Dr's opinions. But as of the 2nd, I'm off completely, for now. For two reasons, "Zelboraf and radiation do not mix well together. There has been some bad interactions seen at sites irradiated in patients taking the medication. Ideally a patient should stop at least 5 days prior to radiation. And... patients who take a break from the drug sometimes regain response to the medication. This has been seen and is now published."

So here's the plan.

It's unlikely, but should all the stars align in my favor, my PET would show complete clarity of the body, except for the node, indicating there's some connection between the two, maybe the node is "seeding" my brain. They surgically remove or SRS the node, and tell me my head is SRSable again, and they do that, rather than WBR. They're all taken care of, never to return and I live a long life, learning so much from this experience, and helping others along the way until this beast is tamed. Which seems is just around the corner, if we could just hold on a little longer...

The more "realistic" plan and near to last option that's been discussed and I'm hoping for: 1. Keep off zelboraf. 2. If scans aren't too bad, get SRS, as WBR might change things. 3. After radiation, wait a week, then start zelboraf for a week. 4. Begin IL2 the next day. I would like this option, IL2 was the first thing I did and although it didn't cure me, I tolerated it well (14 bags and 9 bags) and although the dozens in my lungs and nodule on my chest progressed.. the good sized tumor in my liver just vanished without a trace the cluster of mass on my back softened for awhile. I guess I'm just excited about this, because it's another option.

If scans look bad. Or I make it through the IL2 with no benefit. Traditional Chemo is an option and something I have never tried. Most likely Temodar. Maybe Temodar and Zelboraf together..

And maybe, if I could buy a little time, maybe I could get on one of those "Compassionate Use Trials". If one shows up. One of those MEK inhibitors or AntiPD1 things I keep hearing about. I'm hoping something's gotta eventually work right?
 

Thanks for hearing me out. Any insight or opinions? Encouraging relatable stories?

Sorry If I've missed out on keeping up with some of you, there's so many people on here, and if you miss a day or two, the board just flies by.

-Kevin

 

I've been watching the Olympics lately, jealous and envying the health, energy, and strength of all these athletes. But got to thinking, in a way, we're just as strong and talented as any of these athletes, if not more.. And were a team too. Helping each other fight, not for a gold, but for life. A relentless mental, physical and emotional struggle on a whole nother level. We're basically Olympians.

I hope to post decent scan results this week and have a "set plan". Talk to you soon.

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Gene_S's picture
Replies 3
Last reply 8/6/2012 - 10:07pm
Replies by: Anonymous, ToddC, chalknpens

Here is an excellent video about cancer in general, it is a must see video!

http://www.youtube.com/watch?v=WnaBG177VIw&feature=related

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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deardad's picture
Replies 5
Last reply 8/5/2012 - 11:48am
Replies by: Anonymous, Jeff's Mom, saddaughter, deardad

My dad is now in a wheel chair, he has no headaches buts needs mum to carry his weight to bathroom etc. He'a had this shocking flu that robs him of sleep at night and has for the last week. He's so tired and nods off during the day. Its so hard because I know he is dying and it's so hard to know whether it's the cancer or lack of sleep from coughing all night that's making him tired.

We have booked in to see the neurosurgen on the the 16th of August for SRS. He looked at dad's MRI and wants to talk to him about SRS to try to prevent further paralysis. Personally I'm not confident he'll make it to that appointment the way things have declined so much in a week.

Sorry to give you all the this blow by blow description.

Palliative care have been fairly hopeless in getting drugs to us and mum is so determined he will die at home under her care.

I called a GP in today to see if dad could have some sleeping tablets and he recommended half dose (he's never had one before).

My bro in law said not to give it to him with bronchitis, he needs to cough.

I'm not sure what to do now...take the pill or not? He's slowing down....does anyone know what I should expect roughly from now on?

Can't believe I'm now in here in this dark place that I always put away in the future.

Thanks everyone

Nahmi from Melbourne

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Hi Kevin,

 

I have been away from the board & trying to catch up on what's happeneing!

I have been praying for you all week because I knew you would be having your MRI & Scans.

Please post an update when possible.

Stay Strong!

MaryBeth

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ramannjr's picture
Replies 11
Last reply 8/15/2012 - 11:04pm

In April 2006, I found a black mole on my right ankle.   After having it punch biopsied by my dermatologist and looked at by pathologist, it
was determined it was 1.4 mm melanoma.   I had WLE done and no chemo/immunotherapy.    I remained fine with no new moles or anything
unusual until April this year.    I had a marble sized raised bump on my upper right thigh.    After months of testing, I found out last
week that it is a melanoma from the original melanoma.   They had to send it to the Mayo clinic to confirm with an expert.   Last Thursday,
I met with a surgical oncologist and oncologist.   I had surgery on Friday, another WLE and SLN dissection.    It turns out that there
were no traces of melanoma in the WLE site, but there are a couple of microscopic traces of melanoma (I believe 2 and they are less than 0.4
mm).   The oncologist on Thursday, said best case scenario (no melanoma in lymph nodes, all WLE site is clear and PET scan is clear),
I would have to do weekly Interferon shots once a week for a year and be PET scanned every 3 months.   My PET scan is scheduled for this
Tuesday.   I'm hoping and praying it has not spread beyond the lymph nodes in my right groin.    The surgeon already is recommending a
lymphendectomy of the right groin area, but is awaiting the PET scan to determine if surgery is required anywhere else.    I meet with the
oncologist to go over everything next Thursday and come up with a plan.   Do you have any idea what I might expect to be done?   I'm
very scared right now.  I'm 38 yrs old, married happily with an 8 month old son.   I'm hoping I can get through this.   Is there a
chance for a cure in my situation you think?   The surgeon told me 24% 5-yr survival rate, which has really scared me.   That was a general stage IV number? 

I feel okay now and I'm healthy, do you think I have many years left?

Does anyone know of a good oncologist in the St. Louis area that specializes in

melanomas?   I'm currently working with Dr. Ryan Neff on the surgical side and

Dr. Hsiao O. Hu on the treatment side.    I'm mainly going with them based on insurance tiering. 

Thanks,

Roger

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Replies by: ramannjr, Swanee

In April 2006, I found a black mole on my right ankle.   After having it punch biopsied by my dermatologist and looked at by pathologist, it
was determined it was 1.4 mm melanoma.   I had WLE done and no chemo/immunotherapy.    I remained fine with no new moles or anything
unusual until April this year.    I had a marble sized raised bump on my upper right thigh.    After months of testing, I found out last
week that it is a melanoma from the original melanoma.   They had to send it to the Mayo clinic to confirm with an expert.   Last Thursday,
I met with a surgical oncologist and oncologist.   I had surgery on Friday, another WLE and SLN dissection.    It turns out that there
were no traces of melanoma in the WLE site, but there are a couple of microscopic traces of melanoma (I believe 2 and they are less than 0.4
mm).   The oncologist on Thursday, said best case scenario (no melanoma in lymph nodes, all WLE site is clear and PET scan is clear),
I would have to do weekly Interferon shots once a week for a year and be PET scanned every 3 months.   My PET scan is scheduled for this
Tuesday.   I'm hoping and praying it has not spread beyond the lymph nodes in my right groin.    The surgeon already is recommending a
lymphendectomy of the right groin area, but is awaiting the PET scan to determine if surgery is required anywhere else.    I meet with the
oncologist to go over everything next Thursday and come up with a plan.   Do you have any idea what I might expect to be done?   I'm
very scared right now.  I'm 38 yrs old, married happily with an 8 month old son.   I'm hoping I can get through this.   Is there a
chance for a cure in my situation you think?   The surgeon told me 24% 5-yr survival rate, which has really scared me.   That was a general stage IV number? 

I feel okay now and I'm healthy, do you think I have many years left?

Does anyone know of a good oncologist in the St. Louis area that specializes in

melanomas?   I'm currently working with Dr. Ryan Neff on the surgical side and

Dr. Hsiao O. Hu on the treatment side.    I'm mainly going with them based on insurance tiering. 

Thanks,

Roger

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Richard_K's picture
Replies 8
Last reply 8/11/2012 - 6:36pm

I had another good set of scans completing 29 months in the Zelboraf phase II trial.  I was given another six week supply that will take me past the 2 1/2 year mark.

Dick

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chalknpens's picture
Replies 4
Last reply 8/6/2012 - 8:57am
Replies by: chalknpens, Janner, hbecker, Anonymous

I had the bone scan done last week, and met with the orthopedist this week to hear the results. While he found evidence of an old fracture (which might correlate with the beginning of the pain a few years ago in my lower right rib) he saw no indication that the melanoma had spread to my bones. That was very good news, and reassuring.

He is still, though, suggesting that I enlist an oncologist to manage my melanoma treatments from this point on. My dilemma is whether to go in to Boston to Dana Farber, or to go to my local hospital and find an oncologist there.

I feel a bit foolish going in to Boston, with what might be no reason to look for an oncologist. The dermatologist told me a few weeks ago that this was 'just superficial' stage 1 melanoma. But the orthopedist is looking at a larger picture, and further ahead, and suggesting that an oncologist would be the right doctor to help me make decisions when or if more melanoma is discovered.

This is deja-vu, reminding me of receiving the diagnosis of relapsing remitting multiple sclerosis five years ago. I agreed to the daily self-injection for treatment, even though I had not had recurring symptoms but always different symptoms. I was advised that the injections were designed to 'slow the progression' of MS, not treat any symptoms that came along. The belief was that by reducing the number of relapses, it would slow the progression.

New research is out now that denies that - even though the injections reduce the number of relapses, it does not slow the progression overall. I had been very depressed by the whole MS treatment ambiguity, and had stopped the injections on my own last year, but too late to save my careeer, as I'd been encouraged to choose 'quality of life' and retire earlier than I'd planned. I did retire, but on a smaller pension than I'd planned. Once I retired, i stopped the  injections and immediately felt better for a few months ... until this May when i was diagnosed with melanoma and other skin cancers, and the surgeries began. 'Quality of life' is different than i'd expected ... we spend most of our time and too much of our money driving to skin surgeries week after week.

I've already begun questioning the wisdom of allowing the surgeries, which leave large lines of sutures, to begin, if it is 'only superficial and stage 1.'

There are no do-overs in life, much as i wish there were.

But the bone scan showed no bone cancer.

I am not perfect, but I am enough.

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Steve2142's picture
Replies 16
Last reply 10/9/2012 - 9:27am

Hey everyone -

Based on finding three microscopic deposits in a lymph node in my neck (one positive node and one negative), my doctor is adamant that I have an immediate CLND to remove 50 nodes and part of my parotid gland...although he acknowledged that observation is an option. I am not sure why but I just don't want to rush into this surgery and risk potential nerve damage...especially as thinks there is only a 3-4% chance of other nodes being positive. I welcome anyone's thoughts on this. Thanks!

Steve

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Jennholbert's picture
Replies 8
Last reply 8/5/2012 - 5:27am
Replies by: LynnLuc, natasha, Jennholbert, Anonymous, jag, AngelaM

The report looks good with one little exception. I will see the oncologist in two weeks for rond two.

Here are the results...
Malignant Melanoma
Type: superficial spreading malignant melanoma
Clark's Level: II
Thickness: breslow of .26 mm
No ulceration
Dermal Mitotic Rate: 0 (this really shocked me!)
Lymphomas ulnar space invasion : none
Precursor Nevus: present
Biopsy Margins: the lesion extends close to at least one radial margin: wider margins are indicated

It appears I had a partial regression.

We found another very little spot on the palm of my hand that will need to be checked out.

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chalknpens's picture
Replies 3
Last reply 8/3/2012 - 1:59pm

I am new to melanoma. Since the end of May, I've had five sites biopsied and all have come back with something: two were basal, one squamous, and two melanoma. I've had three Moh surgeries on one melanoma site, two on the second, smaller site, and full excision on the two basals. The squamous will be either excised or Moh when the stitiches come out of my second melanoma.  I'm in my sixties, and never had stitches before this. Now this summer, in the past eight weeks, I have over a hundred. It has been non-stop, with only a few weeks in between surgeries while stitches heal. Then back for the next. The stitches are all still recent, and ugly, and obvious. My back looks like it bears the "Mark of Zorro." So now does my arm.

I also have multiple sclerosis, and serious depression as a result of the MS diagnosis, which took me out of my classroom earlier than i'd planned. I've always been heat intolerant, perspiring heavily and looking nervous even when I wasn't. This, too, over time, added to the stress and anxiety that became depression. I was injecting a medication I didn't have faith in for four years, and finally last year, with the help of a counselor and anti-depressant medication, i was able to 'just say no' to the prescription for multiple sclerosis, and had just begun to feel more of my old, confident, assertive self. But it was too late to save my career. Little did I know that melanoma was yet ahead. I loved my job. I loved my colleagues. I miss them.

I'm from a large family. Some of my siblings have passed, as have my parents. But I still have five siblings. Most are a few years younger than I am. They continue to think that I can handle it. Only my husband truly "gets it." He is my rock, and always a full partner in my medical issues.

I never did manage to help my sisters understand that MS limited my energy, made my comfort level difficult to attain in summer, and cut into our financial resources. They are aware of the melanoma now, and yet still plan family get togethers on sunny beaches that are long drives away.

It is so defeating to know that there will always be a 'next time' for surgery, and stitches, and co-pays. And there will always be another social expectation of a sunny beach get together.

I guess I just needed to vent this in a safe place. It is so frustrating. They are all in their fifties or more. They are not uneducated, and not uncaring. But they are so dense when it comes to what they believe i ought to be handling and still showing up socially. I just want to walk away from them totally. But they are family. They were 'hurt' a year ago when i asked them to stop inviting me out to lunches with mediums at expensive restaurants.

I don't need lunch with a medium. I need time to sleep, and to save money for medical bills that are never ending. I want to spend awake time with my husband, or with my grandchildren and adult children. I am so fed up with them. They just don't get it.

I am not perfect, but I am enough.

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sjl's picture
Replies 5
Last reply 8/4/2012 - 1:52am
Replies by: sjl, cliff61, Anonymous

My husband was diagnosed with mucosal melanoma of the nasl cavity in April.  He's had surgery for it twice with clear margins the second time plus the removal of several lymph nodes, one of which was malignant.  He's at stage 3:  T3c, N1, M0.  In addition to that they found another primary cancer, non small cell squamous in the lung. 

They've held off on radiation while they figured out the lung and he is scheduled to have part of the lung removed in a couple of weeks.  Now, everything is up in the air again.  He woke up Sunday morning with a chain of lumps along the neck and swelling.  It has gotten worse.  We saw a doctor yesterday who said it's melanoma that has spread to the skin.  Biopsies were taken with a rush order and we will get an appointment ASAP after the results come back.   I can't believe how fast those bumps showed up.  We had just seen a doctor about a week earlier and asked about a small swelling at the top of the incision in the neck and were told that it was nothing to worry about.  We were told repeatedly yesterday that the delay in radiation has nothing to do with the melanoma coming back like it did.  I thought that's why we were supposed to do radiation in the first place!  I know that radiation doesn't always work but what hope is there for my husband now?  They are talking about doing a shorter but stronger course of radiation than originally planned and possibly radiating the lung now rather than removing a piece.  He's being checked for cKIT for the possibility of Glevec and maybe another clinical trial.  The doctor we saw yesterday had asked for the testing for cKIT back in May and we found out yesterday that it was never done.  He's asked again.  We are dealing with UPMC and the Hillman Cancer Center so we've got good doctors but even there, you have to stay on top of things yourself. 

Any suggestions?  Is there any hope?

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Jennholbert's picture
Replies 2
Last reply 8/1/2012 - 8:19am
Replies by: AngelaM, natasha

I was diagnosed tonight at 7:30 by my sweet dr who wanted to give me the info as soon as she received it. I had a mole on my right calf for a good 4 years. Last Friday (7/27) I had the mole removed along with good margins. The wound has been left open ...oh how nasty it looks! :)

I was surprised how fast the results came back, considering the lab only got the biopsy yesterday morning. I was told that it is an early stage melanoma with shallow growth. Dr mentioned how deep it was, but my head was swimming. So that's good.
One slide showed that I had a regression so I'm being sent to an Oncologist for my follow up procedure and possible look at my lymph nodes.

Tomorrow I am going in to have my wound checked and to talk more. Can anyone give me a list of questions to ask my dr tomorrow and also the Oncologist?

Thank you so much!

Jennifer

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