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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I've been thinking of her.

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TracyLee's picture
Replies 10
Last reply 3/11/2013 - 1:40pm

I'm in "lower, slower" Delaware. Anyone else on this board from Sussex County, DE or possibly the Eastern shore of Maryland? There is not a local melanama group that I can find in my area...just a lot of breast cancer groups. Naturally, their issues/treatments are not the same as mine, so I've not attended anything they offer.

Never will I leave you, never will I forsake you. Hebrews 13:5 Cast all your anxiety on Him, because He cares. 1 Peter 5:7 Stage IV 5/16/11 Ipi - 4 rounds May - July 2011 BRAF expanded access trial 8/8/11

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TracyLee's picture
Replies 14
Last reply 5/21/2011 - 12:16am

Hi all,

Since I often post whiny posts,  I thought you'd enjoy a more upbeat post!

Excellent consult with Dr. Sharfman at Johns Hopkins yesterday. I'll begin ipi/Yervoy, probably next week. He was wonderful, I HIGHLY recommend him to anyone in the area of Baltimore (or willing to travel).

As another positive note, my husband is finally "getting it", but in a good way. He's on board, his employers are very very supportive, the kids are being helpful (as much as 20, 18, 15, and 14 can be, in between being normal teens/twentysomethings!). The house is even clean, most of the time. :)

While beginning ipi, Dr. Sharfman is testing me for BRAF, also.

Although I was very discouraged Monday due to moving to Stage IV, I greatly appreciate not one but two doctors taking the time on Tuesday to call me and let me know the brain MRI was clear! And even more so, I appreciate the support on this board in your responses.

God is good, all the time. Family, friends (especially here, where you all understand), physicians. I've got my posse, and I'm on the move towards NED...soon!

Never will I leave you, never will I forsake you. Hebrews 13:5 Cast all your anxiety on Him, because He cares. 1 Peter 5:7 Stage IV 5/16/11 Ipi - 4 rounds May - July 2011 BRAF expanded access trial 8/8/11

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dian in spokane's picture
Replies 17
Last reply 5/22/2011 - 8:55am

Today is the second anniversary of my last surgery. I have a long and crooked history of melanoma (which is in my patnet) starting in 1983. I advanced to stage IV in 2008 after 5 years of being NED at stage III. Last year I participated in a 6 month clinical vaccine trial, which I completed in December and I am hoping it will help KEEP me NED for a few more years!

I feel very fortunate that I've not had to deal with some of the worst issues of advanced melanoma. I've had no organ involvement, and my subcutaneous tumors have been isolated and treated surgically.

I have a PET/CT scan scheduled for early monday morning, so keep your fingers crossed for me!

I always like to make note of these NEDversaries here, where people understand me.

cheers!

dian in spokane

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Terra's picture
Replies 5
Last reply 5/19/2011 - 10:30pm

Hi, Derek was taken off of his P13K/Mek inhibitor trial in Toronto because the breakdown of a muscle enzyme was too high - we really thought it was doing something, he was on it for a month and was feeling really good. He has been off it for two weeks, we are now waiting for ipi washout period which is 28 days I think this is too long, scans showed lots of melanoma before original trial - 3-4 in bones, inumerable mets in liver, 1 in kideny, and some in muscle, and possibly other places. 

Very afraid of brain mets.  Derek is taking small naps here and there, eating well, doing some light work at home and our rental properties. I guess you can't tell looking at him what is happening, he does seem to be very forgetful which is not like him at all, but I just don't know what to do in the meantime while we are waiting - Should I push for sommething in the next two weeks or I guess the wash out period is for anything any drug (we are in Canada and so yervoy is not registered yet.)

I know there are many people in similar situations - I am thinking of all of you.  

 

TErra

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Nebr78's picture
Replies 7
Last reply 5/23/2011 - 8:35am
Replies by: jag, Nebr78, nicoli, Anonymous, FormerCaregiver

I have Melanoma IV.   I have a friend who is a retired lab technicion in a hospital.  We visit a lot about the rotten stuff. We live in different states.

He knows of 2 people that have gone to Old Mexico for Melanoma treatment. He sent me a letter explaining somewhat about the treatment.  Of course I could not understand all the medical things they did..  They usedHeat-Put patient in High-oxygen atmosphere, - Injected insulin.   High cost  $25,000

Take this for what it is  worth.  I  do know my friend would not lie to me..  He may not have gotten the truth, though..  I did use online chat with American Cancer Society.  They did not know or want anything to do with it.    I am pretty sure that Society does not want a cure for Melanoma as well as the Cancer Industry.   Too big of a business.  You can see I am alittle bitter with all the crap I have gone thru that don't seem to help much. I am going to take 2 pain pills now and go to bed.     With heart disease and 79 yrs. old, I am not interested in it, esp. the $25 thousand.

I am alittle curious if anyone else has heard about it??                               

 

 

 

 

 

 

 

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NicOz's picture
Replies 11
Last reply 5/21/2011 - 10:52am

This is going to be an essay, so apologies in advance...

At the start of March, I started feeling not so fantastic. Nauseous, abdo pain, and these little nodules started popping up at a rate of knots on my neck/clavicle and scalp- "Hold the phone! That can't be good!!" Off to see my GP, and in for a CT which discovered subq's in the abdo, one of which had completely blocked a ureter *rolls eyes* Drama, drama... off to have a stent inserted, then off to Sydney to aim for a brain met trial- 2 weeks later I was enrolled onto the GSK113929 study. Finally!!

(I didn't even ask what the scan results showed at the time. I made the executive decision that the study was either going to work, or it wasn't, and I could probably do without stressing the 'details' of what was going on in my body. It turned out to be the right choice for me on that occasion as my eyes nearly popped out of my head when I read the scan results from the study almost 4 weeks later.)

After a mere 3 days on the study, the nodules around my neck & clavicle had virtually disappeared and the ones on my scalp were reducing in size and pain (I thought my tumours must be making me hallucinate- how could it possibly act THIS quickly?!?). They had been hoping to be able to remove and biopsy several of the subq's and nodules to perform additional research on the effect of the drug, however within 2 weeks they no longer had any of the palpable or visible areas to choose from.

SCAN RESULTS (2 pages- impossible to condense)

MRI- Multiple underlying enhancing bilateral cerebral lesions however most have reduced in size. Left frontal from 14x12mm down to 5x5mm. Left parietal from 12x12mm down to 6x6mm. Right parietal from 11x9 down to 6x5mm. Some of the smaller lesions are no longer visible and this includes the previously demonstrated cerebellar lesions (of which I was blissfully ignorant! :D)

Dominant lesion in right basal ganglia may be slghtly larger at 23x21mm from 20x18 (note from me: THIS lesion had been previously zapped with SRS and I frequesntly seem to have some small growth following several months after SRS which often stabilises and then begins to reduce)

OVERALL: Reduction in size and in some cases resolution of many of the multiple cerebral and cerebellar metastases.

CT: Chest- reduction in size of right upper paratracheal nodule, down to 4mm from 11mm previously. No suspicious intrapulmonary mass.

Abdo & Pelvis: There remain 3 focal liver lesions (Really? I was blissfully ignorant of that, too! :D) One has reduced from 21x18mm down to 14x10mm. Another is persisting at 19x18mm, as does onea small lesion at 9x9mm. There has been a reduction in the right adrenal mass, and reduction in hydronephrosis.

OVERALL: there has been dramatic subtotal resolution of the previously demonstrated innumerabel subcutaneous nodules and significant reduction in size of the paratracheal and axillary lymph nodes, although only slight reduction in the size of the liver lesions.

And how could I forget the indignity of a "persisting nodule in the right flank, reduced from 19x11mm down to 11x7mm." One in my right butt cheek. Pffft! Perhaps I shouldn't have tempted melanoma by telling me consistently that it can kiss my butt cheek, eh? :P

Back in another month for more scans and a chat with the docs.

SIDE EFFECTS: Sore/painful soles of the feet. Were it not for that I'd be tempted to be training for a half-marathon I feel so good otherwise. Am off pain meds completely (fentanyl) and currently weaning of the steroids dex/decadron. And stent should be out in a few weeks when I catch up with uroogist. Now, after a hectic 6 weeks away, I'm going to sit on MY lounge and catch up on some tele and veg out completely.

 

Meh. Get on with it. Do not feed rabid monkeys. To fear is one thing. To let fear grab you by the tail and swing you around is another

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mimi0201's picture
Replies 10
Last reply 5/20/2011 - 7:49pm

Does anyone have any idea of what the status has to be in order  to receive Yervoy?  When is it too late?

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slpinion's picture
Replies 10
Last reply 5/21/2011 - 12:18am

Hello,  I have recently been diagnosed with melanoma and am open to information and encouragement from those who are already walking this path of surgery / treatment / survival.

My story....... I am a 4th grade teacher, and while I was on spring break in early April, I had a biopsy completed on a skin mole that had recently changed colors. The biopsy results came back as malignant melanoma (cancer - stage I), and I was referred to a surgical oncologist. After meeting with the surgeon, the plan was to have a lymph node trace completed and the "suspicious / hot" lymph nodes were to be removed surgically. At this time I was told there was a 6% chance that the cancer had spread to the lymph nodes......and my thoughts were very positive because I knew that meant there was a 94% chance that the cancer had NOT spread. So, 5 lymph nodes were removed and sent to pathology after the lymph node trace on May 3rd. 

Unfortunately, 1 of the 5 nodes that was removed was positive (25% of the node itself was malignant tumor). I went from cancer-stage I to cancer-stage 3. 

Now I need a PET scan, a CT scan, and a brain MRI, to see if the cancer has spread anywhere else; those scans will be completed Thursday, May 19, 2011. Another surgery (which will require hospital stay) will be scheduled (as soon as the PET / CT / MRI results are available), and all the lymph nodes in the area of the right underarm down to the original melanoma site will be removed and sent to pathology. IF there is any indication that the cancer has spread beyond the lymph nodes, that will put me at cancer-stage 4. About 2 weeks after all the lymph nodes have been removed from that area, I will start treatments.

I WILL be completing the remaining days of the school year and packing up the classroom. I will have the summer break for the second surgery, treatments, rest, & recuperation.

While it is difficult to stay strong, I continue to look up and count my blessings.......like having two outstanding sons (after being told I would never have children) who are both college graduates, and they have jobs! In the words of one of my sons this past week, "You're a great mom who has loved and guided us well. What other mother can say she has raised both an engineer and an architect? You've done very well by us, mom." What better praise can a mother have than that? ;-)

~ Life may not be the party we hoped for, but while we're here we should dance. ~ (Unknown)

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gossteach's picture
Replies 20
Last reply 8/24/2014 - 9:20pm

Hi- I am new to this forum, but have learned so much from all of the info that has been posted. I am in my fifth month of interferon treatment for stage 3B. I feel like the symptoms are getting progressively worse as I get further along....I have joint pain, headaches, loss of appetite,fatigue, and I'm staring to notice myself being very irritable, which isn't my nature. I guess I thought I would get used to the symptoms and feel "normal"by now, but that's not the case. Some of you have stopped interferon due to side effects....how did you know when it was time to stop? Is it typical for side effects to get worse in the later months of treatment?

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gtown's picture
Replies 8
Last reply 5/19/2011 - 5:50pm

Hey what's up? I just had a sentinel lymph node biopsy today as well as the removal of the nodular melanoma tumor on my shoulder ( surgeon said it was approx 1.9 mm, non ulcerated, with a mitotic rate of 7) My question is; he said he removed 3 or 4 lymph nodes which really concerned me, isn't just one lymph node usually removed during this process? I asked him this after the operation and he stated that they were so close ion proximity he felt better off taking the 3 out, is this something to be concerned about? The melanoma is on my shoulder and he took the three from under the armpit. Any insight would be greatly appreciated.

P.S. He stated he saw nothing out of the ordinary while doing said procedure. No swollen or hard noides etc. 

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jag's picture
Replies 5
Last reply 5/19/2011 - 1:47pm

Having been out of the treatment loop, unfortunately, I have lost track of all of the different trials out there, so many letters, so many mutation types, so many histology tests so many drug companies and so on.  I would like to start to organize the different medications (at least get started) so we can see what is working for who.

 GSK 113929

is the number of a trial who "patient" I won't say it yet, is responding very well to.  The drug is made by Glaxo Smith Kline, it is for people with BRAF mutations who also have brain mets.

This is the actual medication name: GSK2118436

The patient has responded amazingly well despite a severe recent relapse.  For now consider this information to be similar to a statistic in a lab report.  

The patient will give the patients own account with much more personality and entertaining details.

Just putting this one out there as it is helpful if you have brain mets, and are not responding.

Here is the link:

 http://www.clinicaltrials.gov/ct2/show/study/NCT01266967?term=GSK+113929&rank=1&show_locs=Y#locn

Information that would be helpful:(just copy and paste this form and fill in your treatments)

Drug name/clinical trial letters/manufacturer

Trial Name

Drug Company

Response duration vs non Response 

Previous Treatments

Mutation status.

Hopefully we can organize this information as to which companies are producing a better product.  Back when Yervoy was being investigated, it was originally a biopharmaceutical startup made by a company named Medarex.  Pfizer was making a similar product at the same time.  For some reason, The Medarex one was better and zipped right through the clinical trials, it went from the names MDX 010 to Ipilimumab to finally Yervoy.  Pfizers was simply discontinued.  

Thank you and I hope this is a helpful start by patients for patients.

 

.

 

 

Insert Generic Inspirational Motto Here

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I've not posted for a long time, but I've been on MPIP on and off since 1997.  I was stage IV NED for 10+ years, until diagnosed with multiple bone mets and sub-q 3 months ago (boo hoo - but that's life).

I went to the Angeles Clinic to see Dr. O'day, and after positive typing for BRAF, I was randomized to the BRAF/MEK combo trial (with the highest level of MEK).  I have been taking the drugs since last Thursday, and so far zero side effects.  I'm just wondering, for those of you who are on BRAF and/or MEK, when did any side effects begin?  We're going on a cruise next month, and I certainly don't want any nasty stuff happening then.

Thanks in advance for your responses,

Harry

Too ugly to die!

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Jan in OC's picture
Replies 8
Last reply 5/21/2011 - 9:12pm
Replies by: Jan in OC, dgkendall, lhaley, JuleFL, Anonymous

I just came across this little video about melanoma that my next door neighbor posted on her facebook. She has watched what we have gone through for the last 2 years and has encouraged her whole family to get checked.  She thanks me everytime I see her lol!   I am sharing it with everyone I know.  

Feel free to pass it on.  It made me laugh and cry.

 

www.thatvideosite.com

 

Jan, wife to Dirk, Stage IV (now trying E-7080)

 

laughter is the best medicine

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Hi All,

 My husband just had his 6 week scan after starting on PLX4032, the Roche Braf inhibitor. He had to be taken off for a 4 days during the last 2 weeks due to side effects, but had been back on the drugs at a reduced dose for the last week before the scans.

Apparently they show a slight progression, the doctor said he's calling it "stable" for now, and wants to check again in 3 weeks.

Jay had been on a MEK inhibitor previously and the docs were worried there might be some drug resistance to the Braf inhibitor becasue of that.

Did anyone else have a similar "stable" scan after taking the drug for 6 weeks and if so, what happened next?

We were so hoping we'd get at least 6 months out of this drug before moving on to the next.

 

thanks,

Emily

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