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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RJoeyB's picture
Replies 5
Last reply 10/21/2014 - 12:39am

(Following up to my last radiation necrosis post a couple of weeks ago here:

 
This past week I had my scheduled three-month full-body PET/CT for continued monitoring but also to possibly be used as part of the continuing assessment in determining how to proceed on the question of radiation necrosis vs. tumor regrowth in my brain.  Physically, I think I've continued to improve slightly, perhaps starting to plateau over the last week.  I still need a cane to get around outside the house, but I'm mostly functional within limits again and we haven't had to increase the dexamethasone dose again.
 
The full-body portion of the PET was good.  No sign of any new metastatic disease elsewhere in the body.  The small lung met that was radiated (SBRT) in February didn't even make the radiologist's report and in reviewing the images, neither my radiation or medical oncologists can see it.  An area in my small bowel that's lit up on my past two scans (and periodically on prior scans over the years), but which we were pretty sure was transient GI inflammation near the site of my small bowel resection over three years ago, also didn't light at all.  A spot adjacent to the surgical site from May in my left tibia was noted in the report with a recommendation for follow-up with MRI, but recognizing that there was recent surgery and that the adjacency to the bone cement may make it challenging for MRI to differentiate.  Knowing my orthopedic oncologist (he's operated on me three times:  left humerus, femur, and tibia) and based on numerous prior conversations, the fact that this area is lighting up on PET likely won't be a concern — in the past he's said that there can be inflammation for 6-12 months after a bone surgery.  So we'll check in with him and it's possible he'll say to go ahead with the MRI, but I'm guessing not at this point, which I'm comfortable with.  We see him in a few weeks for a six-month post surgery follow-up anyway.  
 
(The only other items on the radiology report were cutaneous areas on my upper inner right thigh and bottom of my right foot and the only reason I note them here is to point out the finicky nature of PET:  both areas I told my wife the day before, "Don't be surprised if these light up on the PET."  The area near my groin is an infected pore or hair follicle, which I've been prone to since being on the steroid (reduced resistance to infection + increased sweating + weight gain + "chub rub").  And the bottom of my right foot has been a mess of blister, irritated, and dry skin since that leg and foot has been doing a lot of work with my messed up gait over the last couple of months.  The radiologist doesn't know any of these when reviewing the images, so they make the report, and then my medical oncologist has to "correlate".)
 
Which brings us to the big question, what about the radiation necrosis vs. tumor regrowth?  Of course, there is nothing close to an absolute answer without pathology, but both my radiation oncologist and neurosurgeon were influenced sufficiently to think we should continue down the path of this being RN.  First, while the PET isn't all too helpful in looking for brain metastases (remembering of course that the brain already lights pretty brightly on PET making tumor difficult to discern from normal activity), the fact that there was nothing so bright to stand out at all, indicating something more significant, is something they wanted to see.  My radiation oncologist also requested that radiology perform an "image fusion" of my brain MRI from two weeks prior with the brain portion of the PET/CT, and that fused image didn't show anything that stood out either.  Finally, while the steroid would treat either RN or tumor, they are encouraged that I've seen motor control improvement with the steroid.  The plan then is to continue for now managing this as RN with close monitoring, meaning another MRI in probably about a month.  In the meantime, we'll stay at the current steroid dose unless symptoms again worsen.  The goal of the steroid won't be to completely resolve the motor control symptoms (and it doesn't treat the underlying necrosis at all), only to keep me functional while minimizing the long-term dangers of prolonged steroid usage.  I'm told and have read that more often than not, RN can resolve on its own over time, so for now, the approach they want to take is to balance motor control issues with steroid effects and closely monitor as this plays out over the coming few months.  Other options were discussed, including Avastin, surgery, and I brought up hyperbaric oxygen therapy (HBOT), but the consensus is that we're not there yet with any of those.  Any changes on scans or symptomatically would put anything back on the table, of course.
 
It's as frustrating as it sounds, but I'm trying to be patient and live with the continued ambiguity, both skills I've had to work on over these past few years.  More to follow soon, thanks for reading.
 
Best,
Joe
 
 

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Emcjones1's picture
Replies 17
Last reply 10/26/2014 - 4:54pm

I am 4 weeks post initial diagnosis, and 3 weeks post WLE and SLNB. Pathology identified micrometastases in two nodes. Can anyone else in a similar situation tell me how long their oncologist waited to do PET or CT scans?

I am a 50 year old female biomedical scientist with stage 3a melanoma.

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_Paul_'s picture
Replies 25
Last reply 10/26/2014 - 10:00am
Replies by: kylez, kalisama, Bubbles, _Paul_, Anonymous, Janner

Hi Everybody,

I haven't posted here for quite a while. But it looks like I am back! I reluctantly joined the stage 4 club last month, a little over two years from my initial diagnosis.

My oncologist suggested I embark on a cliniical trial which combines the standard of care, ipi, with irradiation of one of my tumors. The hope being that my immune system will recognize some of the matter from the tumor as antigenic, and combined with the ipi will produce a higher response rate than if the ipi was used alone.

We also talked about nivolumab, since it just got approved by the FDA and has a higher response rate than ipi. But the FDA has approved nivo only for when the ipi has failed. That sounded backwards to me, since it would seem like you should try the drug with the best probability of response first and then move down the line.

So then I got my first insurance statement from the ipi which came in at over $40k! I have never been much of a conspiracy theorist, but given the fact that Bristol-Myers Squibb makes both ipi and nivo, and that the nivo will likely cost the same or more than the ipi, it sure seems suspicious!

I talked to my Dr. about getting the nivo first, and he said that would be an "off-label" use of the drug and not covered by insurance.

Any thoughts on why I have to try (and fail) the ipi before I can try the nivo?

Thanks! - Paul.

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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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ashlee12's picture
Replies 4
Last reply 10/22/2014 - 6:58pm

So yesterday i was told i have melanoma... im only 22 and i feel that my life is over. next year i am getting married and i almost just wanna call it off i feel like im dying..

 

 

They told me that it was caught super early and im not even on a scale yet... they said its just on the surface. 

 

 i am getting it fully removed on the 28th..  im scared tho that its deeper then the thought or has spread in my body.. im very new here and lost and sad 

 

 

 

 

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BrianP's picture
Replies 7
Last reply 10/20/2014 - 3:01pm

I wanted to share this in the event someone else on here finds themselves in a similar situation as a friend of mine recently.  My friend is about 16 months into a 2 year clinical trial for nivolumab.  He achieved a NED status about 4 to 6 months ago.  About a week ago he went in for a regular infusion and got a big surprise. Right before he was heading to the infusion center the clinical trial coordinator came in and told him he was being taken off Nivolumab effective immediately.  Apparently in the protocol there is the following statement, "Discontinuation Due to Confirmed Complete Response:  Subjects with a CR continue to receive study therapy until response confirmation or for an additional 2 cycles (whichever is longer) and then enter the follow-up period."  Being none to pleased with this "surprise" my friend, along with the staff at UVA, appealed to BMS and got them to reverse their decision primarily on the argument that the quote above did not match the paperwork my friend had signed.

I'm curious if this foreshadows what BMS's actions will be at the end of the 2 years for most participants.  From Laurie's post about her trial it seems like Merck may have a different view than BMS.  Time will tell. 

Brian

 

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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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katieherwig's picture
Replies 5
Last reply 10/20/2014 - 11:41am

I was diagnosed with Stage 4 on July 28, 2014. I had anywhere from 10-18 tumors. Mostly in my lungs, liver, and ovaries, it was "widespread melanoma". I also had some in my abdomen, bones, and subcutanous. I had exploratory surger removing my ovareis and some of my small intestine. I started Tafinlar on 08/20/2014 at MD Anderson and had my first round of zometa that day. I went back to MD Anderson on 10/14/14 to get my CT, PET, and MRI scans completed. I got my results on 10/15/14. My doctor was very pleased with the results. Only 2 tumors were shown active in my liver and my left thigh and one dead tumor in my lungs. We are so pleased and happy with the scans. That night I did my first round of Yervoy and my second round of Zometa. I will be continuing the Tafinlar and going every 3 weeks for my Yervoy for a total of 4 rounds. I hope this is just the begining of good news to come! It's hard but I can do it!

I also asked my doctor about diet do's and don'ts. He told me to follow the LCHF diet and also get some information at www.dietdoctor.com.

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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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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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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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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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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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DMU's picture
Replies 0

I had surgery on 10/15/2014. Have stitches across entire lower back, took about an hour or so.  Surgeon said as long as biopsy and all other tests come back fine I will be ok.

Pain is not as bad as I thought it would be. I keep going from hot to very cold. Tired

Hope all this information I have posted helps others who may be scared and have them be able to see hope for a long and healthy future.

:)

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