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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Wilbur's_Mom's picture
Replies 6
Last reply 10/19/2014 - 12:37pm

My father had a melanoma on his leg that was removed by wide excision in October 2013.  He was staged at IIa and was told he needed no further treatment because his sentinel nodes were clear.  In late April he noticed three new lesions near the surgical site.  They were all three melanoma and he was referred to a melanoma group in SF.  In June he had another wide excision around the three lesions and three MORE brand new lesions.  He had sentinel node mapping again and three nodes were identified - two superficial and one deep.  His melanoma surgeon chose to only remove the two superficial nodes.  One of the two came back positive with melanoma and he was re-staged to IIIc.

His oncologist told him the group was recommending radical lymph node dissection of the groin - taking all nodes superficial and deep.  When he consulted with the surgeon, the surgeon wanted only to remove the superficial nodes.  He now has to decide whether to to the radical or superficial with not much information.

One concern I have are that there's still a deep node that hasn't been examined with potential for cells.  The second concern is that the surgeon wants to rely on PET scans for evidence of metastasis.  My father has had several clear PET scans but has active disease in his leg and inguinal nodes so I'm not sure how reliable they are for catching movement early.

Following the surgery (either surgery) he will join the clinical trial for Yervoy vs. Interferon.  If anyone has advice or experience about opting for radical or partial lymph node dissection we welcome input.

Thanks,

Stephanie

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kalisama's picture
Replies 9
Last reply 10/19/2014 - 12:29pm

I;ve been going through so much lately that i haven't had time to check in to the forums, but hope to be back around more as i contiue this journey with y'all.

I'm wondering if others with aggressive brain mets have also been diagnosed with Leptomentingeal disease? While I understand it to be somewhat rare, it now has me more concerned than the melanoma itself. I have been having increased CNS symptoms from numbness to urinary incontenance, as well as some cognitive breakdown. I'm not even sure what to ask my oncs about this new progression which is evidently very full on for me.

Last brain radiation failed, and the 2 largest tumors we are after have tripled in size in 3 weeks after cyberknife. we're going to try to go after them again this week. with the hope that the first Yurvoy infusion of 2 weeks ago may help the radiation work better this time. Starting to run out of options short of WBR, a whole other thread that I'm hoping to not have to go down here or in life.

Anyway, as always, I'm interested in your experiences and wishing you the best of health always.

Blessings and gratitude to all,
kali

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robbier's picture
Replies 5
Last reply 10/18/2014 - 7:42pm

Back in March of this year, I had a PET/CT which showed hree hot spots.  Three surgery later, a trip to MD. Anderson.  Had a Pet/ct scan in July that showed two area of concern.  On in the abdomen and one in the mid right shaft of the femur.  Had a bone scan August 10.  Which showed no evidence of disease at that time.  Cancer Doctor thought I was in remission and didn't need treatment.  Around the last week of August I went to see my General Health Care Doctor.  I felt like I had a pulled groin muscle.  He gave me muscle relaxer, two weeks went by and still in pain.  By his time I was running a low grade fever.  Went back to Dr. He found blood in my urine, and a appointment for a Urologist for Oct 13.  Was sent back to Cancer doctor He sentme to see a Bone doctor.  Saw Dr. Harcout around Sept 16th.  He thought at this time, I had pulled muscles 7,8 in the left left and needed physical therpy.  The pain so severe I couldn't drive, and couldn't walk.  Got a friend of mine to take me to Hospital.  I finally got admited and they did a CT can with and without contrast, and MRI.  Monday ( Oct 6, 2014) the Cancer doctor said there was lesions seen in the abdomen towards he pelvic area, and they found a L4 fracture of  the spine.  Released from Hospital Oct 7th.  Came home, wednesday Oct 8th was sent to see Dr. Hixson for possible radation therpy to the spine.  Dr. Hixson, decided I need to go back to th hospital.  Was re-admitted to Hosptal, in Mobile, Al.  More test, More MRI, of spine, and CT scans with and wothout contrast.  They found changes to brain, the cancer is not in my brain, just changes, those lesions, and possible cancer in the spine.  The first thing they did was pain control.  The specialist said he didn't think they could operate on the L4 because they thought there was evidenve of disease.  Was release Oct 10th from ospital with pain meds and pain hopefully getting under control.  Went back and saw Dr. Hixson after getting out of hospital on Oct 10th.  At that time, I was fitted with a face mask, and lines on my belly.  I just finsihed my first week of radation treatments, for that L4  spine.  They decided first to treat me with radation for the 3 weeks, so I have two more weeks to go.  Then I will be given two weeks to three weeks of rest. Then My cancer doctor is talking about a Braf inhibotor ,two differnt kinds of chemo pills is what I call them.  He wants to see if the these wok, then He said Yervoy.  I still believe God is in control of my life.  I know I have a road ahead of me, doing the best I know how to stay postive in my situation.  Thank all of you for your prayers at this time.

Robbie

I believe in God and his son Jesus, I know that this is not everyones belief. I know that God has me in his hand, I might not like what I am going through but God is the one that gives me strength fromd day to day.

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ABELL's picture
Replies 2
Last reply 10/17/2014 - 7:02pm
Replies by: tschmith, Bubbles

Friend who was having trouble thinking, walking and talking has now made a turn for the better.

The cyberknife did not  work, the tumors never shrunk and were pressing on new parts of the brain that control motor skills & body movements, thus the issues stated above. They discontinued Yervoy for the time being, until the radiation is done.

The docs kept thinking it was just swelling of the brain until they did another MRI which revealed the fail of the cyberknife. She is coughing a lot & out of breath (tumors in the lungs)

The put her through 10 sessions of WBRT, and after the 3rd one, was welcoming visitors again after a long 2 months of agony. She is able to walk (with a walker), text, talk and make descions in regards to her family and medical treatment again. She seems almost back to her normal (somewhat) self.

She starts chemo next week... Is it false hope that she could be heading towards recovery & a longer life expectancy? Or is this something normally done to keep her comfortable for the time she has left.

All these treatments are so confusing! When you think of treatment, you think of a cure or that they are going to fix her... That doesn't seem to be the case with Melanoma.

Any ideas? Thoughts?

I'm so happy she is finally comfortable again, but want to be prepared for a relapse in her condition.

 

Thanks!!

 

Amanda

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Anonymous's picture
Anonymous
Replies 3
Last reply 10/17/2014 - 6:09pm
Replies by: Janner, Anonymous, arthurjedi007

Hi All:   I feel ridiculous running to my derm every time I "think"  I have a new spot.  I am currently stage 1b, had WLE and SNB on lower back.  The 3 pictures are of the small mole/freckle, location is on my back up higher then my original site.  I really don't recall it being there before but I'm just not sure.  I have had a derm checkup since my WLE and if this was there then it must have been fine.   I realize only a doctor can make an actual dx.   I would just like some opinions, I have the worst medical insurance and already have a 10K bill from the surgery for the WLE & SNB.   As always thanks for your input.  g

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Girl52's picture
Replies 5
Last reply 10/17/2014 - 2:23pm
Replies by: Bubbles, Girl52, Ed Williams

Have more questions as family awaits brother-in-law's results. I am a writer/reporter by profession so always have loads of detailed questions....thanks for your patience.

*Have read that WLE of a metastatic lesion or recurrent tumor has different guidelines than does excision of a primary/first-time tumor. Does anyone know what is done differently? Different margins, some different analysis of tissue?

*Why is in-transit metastasis defined as "late-stage disease" if it is regional and non-nodal, as I've read? Wouldn't surgery to remove tumor and adjacent lymphatic vessels be curative? Or, as in other scenarios, is the danger that other regional lymphatic vessels have been affected and are left behind in the surgery?    

Sis-in-law of person just diagnosed with metastatic non-cutaneous melanoma

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BrianP's picture
Replies 1
Last reply 10/17/2014 - 2:04pm
Replies by: Brent Morris

No specific mention of melanoma in this article but seems like it would be applicable.  Hopefully something like this will prove beneficial in combination with the already existing immunotherapies.

http://medicalxpress.com/news/2014-10-human-cancer-prognosis-newly-immune.html

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Anonymous's picture
Anonymous
Replies 11
Last reply 10/17/2014 - 11:20am

Hi Everyone,

I post often, but I'd like to keep this anonyomous.  I have been stage IV for over three years.  The cancer battle is going well, but I am really struggling with side effects.  I do not respond well to rah-rah, cherish every day . . . I do well just plugging away (I smelled the roses before stage IV).  But recently I feel borderline depressed and my marriage/personal life/work/etc., are all struggling.  I have small children and nor much 'me' time, and I am always tired.

Any [realistic] ideas?  Thanks.

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Girl52's picture
Replies 5
Last reply 10/17/2014 - 9:48am
Replies by: Janner, Linny, Girl52

My BIL had WLE and SLNB yesterday of tumor just above his left elbow. Surgeon said second path opinion concurred with first, with diagnosis of metastatic melanoma. But recent PET scan clear. Primary might be regressed skin tumor, surgeon said, and "I won't be surprised to find cancerous nodes, and won't be surprised not to." They'll also check for in-transit metastasis. When results available, I hope surgeon offers staging information and recommendation to see oncologist, as BIL has resisted finding out anything about melanoma or consulting an oncologist.

BIL, in his mid-50s, already has a stent in renal artery; high blood pressure; and atrial fibrillation. In fact, surgical team yesterday noticed the a-fib during procedure and asked if BIL was seeing cardiologist. He isn't. Does an underlying cardiac or other health issue make possible systemic treatment trickier, or harder to tolerate?

I have read that, with metastatic melanoma diagnosis but clear scans -- and with or without node involvement -- some patients take a watch and wait approach. But do many decide on adjuvant therapy?

What are chances that BIL's elbow lesion was the only metastasis from unknown primary....that there are no micrometastasis elsewhere that might be nipped in bud with adjuvant treatment?

 

 

 

 

 

 

 

Sis-in-law of person just diagnosed with metastatic non-cutaneous melanoma

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Patina's picture
Replies 4
Last reply 10/16/2014 - 9:18pm

More good news to share...

My Mom, who is stage IV with 25 brain mets treated, had her 7 & 6 month checkup after her her last treatments with ipi and gamma knife radiation. - No CT scans. Just MRI scans for her brain.

Everything is really going well. There are no new lesions and the brain mets are stable. Still no known cognitive issues or anything else to report. If things remain the same at her next MRI she will be cleared to drive some time in December. - 1 year and one day after her first treatment.

Keep your fingers crossed that these results hold. She can't wait to drive again. - Everything else is excellent.

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JerryfromFauq's picture
Replies 1
Last reply 10/16/2014 - 6:59pm
Replies by: Julie in SoCal

I will be late for tonights chat.  We were planning on chatting at 8 pm.  Some others may be here then.  i have to be out until around 9 pm.  Hope to jopin the chatters then.

 

Jerry

 

I'm me, not a statistic. Praying to not be one for years yet.

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penelope10's picture
Replies 2
Last reply 10/16/2014 - 5:54pm
Replies by: penelope10, Anonymous

I am a 36 year old male with a family history of malignant melanoma.  Since I was 17, I have seen a dermatologist and have had five excisional/shave biopsies that have all been benign. Over the last 19 years, I have been active duty in the US Navy and have moved 8 times. Because of this, I have never had continuity of care and seen a plethora of dermatologists. No pictures have ever been taken of my many moles, and it has usually been up to me or my wife to notice any changes. In September,  a CT scan noticed a 1cm non calcified nodule in my left lung and my radiologist ordered a PET/CT which I had yesterday.  Good news was the pulmonary nodule showed no hypermetabolic activity. But the scan noted the following..."There are multiple foci of increased hypermetabolic activity with associated dermal tissue thickening on CT images: right back at the level of T7 with max SUV of 5.6, right back at the level of L1 with max SUV of 2.9, left back at the level of T11 with max SUV of 2.6, bilateral upper flank regions with max SUV of 2.2 on the right and 1.1 on the left, right upper medial thigh with max SUV of 4.6. Recommend clinical correlatiom. Differential include infectious/inflammatory process, however, cannot exclude malignancy." I have normal looking moles at all of these locations. I am not asking your opinion on whether I have melanoma or not. My dermatologist will do that when I see him in two weeks. Until I see him, I was just curious if anyone on the forum has received their initial indication of melanoma via PET/CT which led to unsuspecting moles to be biopsied? Any recommendations for questions to ask my dermatologist with the above test results? Thanks in advance!

 

 

 

 

 

 

 

 

 

 

 

 

 

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Roncole11's picture
Replies 6
Last reply 10/16/2014 - 5:04pm

I have been diagnosed with metastized melanoma in my lung, I also have Crohns Disease and have been on immune suppression meds for about 15 years. Because of the Crohns, I am unable to take yervoy.

Does anyone else have this problem? I have been to Johns Hopkins, and the doctors there were not a big help.

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DMU's picture
Replies 3
Last reply 10/16/2014 - 2:22pm
Replies by: Anonymous, DMU

Someone wanted to know the diagnosis.

0.1mm Breslow thickness, Clark level 2, present at lateral edges

has anyone had a similar  melanoma? If so I would like to know how yours turned out after surgery.       Thanks

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tschmith's picture
Replies 10
Last reply 10/16/2014 - 12:29pm

Yesterday I finally got my first set of scan results since beginning Keytruda in July.  My tumors are shrinking! A soft tissue mass has disappeared. Some lymph nodes have gotten larger but I was told that this is common with immunotherapy and that they will hopefully shrink as well. No new mets. Got my info in a phone call so I haven't actually seen the radiologist's report yet.  My back tends to bother me in the L2 area where Melanoma fractured my vertebra, but there doesn't appear to be any changes. (Had surgery and now have 2 rods/6 screws.)  It doesn't hurt but gets stiff and tires easily. We discussed getting more physical therapy and some other options.

So...Keytruda is working and I'll get my next infusion on the 21st.  

smiley  That happy face kind of looks like me because my eyelashes and eyebrows have turned white since my third infusion.  :))))

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