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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Gene_S's picture
Replies 4
Last reply 8/15/2011 - 1:06pm

This Friday Gene will get his 24 week scans to see if he has kicked mel in the A$$.  Lots of prayers are needed.  We are hoping for NED with these scans.

Judy wife of Gene_S stage IV

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

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boot2aboot's picture
Replies 11
Last reply 8/15/2011 - 12:48pm

I wanted to let everyone know that i will receive my scan results tommorow...i have scanxiety and fear the worst...the day after that i fly to Moffitt and meet with Dr Weber about participating inthe Braf/Mek trial there...i also contacted Dr LaRusso at Karmanos in D town because they also have braf trials and will be going to them the following week...so i will be busy looking fro treatments to stop this runaway train....

as far as CVD...i made it through the second round and was desperately sick for 4 days after...then, miracle of miracles, feel a lot like my old self now that i am de toxifying....

boots

don't back up, don't back down

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Melanoma Mom's picture
Replies 19
Last reply 8/15/2011 - 12:08pm
Replies by: Anonymous, mombase, Charlie S, Janner, akls, eaca

I don't believe writers should have the choice of posting anonymously, as many times it is only to write rude and controversial comments. Please join me in writing to the MRF to ask them to require everyone to use a profile to post. 

I wrote them at the following link:

http://www.melanoma.org/learn-more/contact-us?sid=1404

I will not be responding to any posts on this link. Yes, that's to you, Mr. Anonymous. 

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nickmac56's picture
Replies 4
Last reply 8/13/2011 - 7:34pm
Replies by: nickmac56, MaryBZ, BethA, lhaley

My wife had her treatment - it lasted only 49 minutes. We got there at 6am and didn't get out until noon. It certainly is more painful than Cyberknife. She got 4 injections of local anesthetic at the sites where the head support frame is attached. She is pretty stoic and has a high pain tolerance; she's had a ton of sub-q tumor surgeries under local. But she said this was the worst. The spot where the pins will go gets filled up with the anesthetic fluid - quite pronounced. Once it got working after 20 seconds she had no pain at all the rest of the time. They attach the frame with four pins and they tighten them all the way to the skull. They pulled out an allen wrench and the neurologist really reefed on it - I was surprised at how tight they got it. 

They gave her an Atavin - sedative - and that made her pretty sleepy throughout the entire procedure. After the head frame attachment it was a piece of cake - get the MRI - wait 90 minutes while they do the gamma radiation plan, then the treatment itself. She's been napping all day in recovery, but otherwise in pretty good shape.

Given the choice she would do the Cyberknife again in a hearbeat over Gammaknife. 

Her motto: "Don't wait for the storm to pass, love dancing in the rain".

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Anonymous's picture
Anonymous
Replies 0

Happy birthday from your secret admirer! Good luck with Yervoy!

P.S. I know your age!

This information is for general patient educational & information purposes only. It should not be used for diagnosing/treating a health problem or disease. If you have or suspect you may have a health problem, you should consult your healthcare provider.

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TracyLee's picture
Replies 11
Last reply 8/13/2011 - 8:01am

Hi y'all,

I began BRAF this past Monday, after completing 4 rounds of ipi.

I am having an excellent BRAF response, already!

Neck nodes are down at least 1/3, if not 1/2.

Lumps/painful bumps on scalp - much smaller, flattening out.

Just wanted to post some happy news to encourage everyone out there.

Always keep trying, never give up.

God is SO good!

Woo hoo, posse up, we are kicking it to the curb!

TracyLee

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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Lisa13's picture
Replies 3
Last reply 8/13/2011 - 2:46am

When I spoke to my Dr about my CT scan taken July 22nd, he said other than small lung mets, I had no other spead. After receiving copies of my CT, I'm reading the following:

"Interval development of an infracarinal lymh node, short axis is 1.2cm. Otherwise, no new mediastinal or hilar lymphadenopathy"

and then the impression is:

"Further growth of the previously seen lung mets as well as development of a mediastinal lymph node metastasis"

That to me is a lymph node now suggesting spread does it not?  I wonder why my Dr didn't mention this to me? Maybe it's all relative cause I have lung mets or maybe he's not concerned. Just seems strange especially when I asked him if it's spread anywhere else and he said "no".  It also seems strange how they are assuming lymph node metastasis when they havn't biopsied anything. Just saying...............

 

Lisa

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

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It's kind of going from bad to worse for my wife. Today she goes in for Gammaknife treatment of the three new brain tumors. Should be a piece of cake and beats a craniotomy (which she has had before). But earlier in the week she felt a pain in her tailbone area, so we squeezed in a visit with our oncologist and he arranged a CT scan (which occurred yesterday) and bone scan (to take place Monda). He called last night to tell us that in fact the CT scan had found a tumor at the tailbone area (soft tissue) so indeed there was a source of her pain - but that it could be treated with radiation. He then went on to tell me that it appeared there was evidence of cancer in her spinal column. and that was not treatable. He wanted her to go ahead with the bone scan and gammaknife and we go in to see him and discuss it more thoroughly on Tuesday when he has both the bone scan and CT results and he can show us pictures and discuss what we can treat and what we can't.

Obviously untreatable involvement to the spinal column does not sound good in any way, shape or form. I can't find anything much of help online about what that means in terms of symptom progression  - other than pain adn eventual death. Anyone else have this or have a loved one who has had it in the spinal column? Are symptoms associated with location? or once it's in the column and it travels and grows it is just a matter of time before it shuts down vital functions. I also assume it means it's a highway to the brain and we can probably expect more there. I know her life expectancy just got very short, but knowing what to expect in terms of symptoms and progression would be very helpful as we assess treatment options.  Thanks, 

Nick

Her motto: "Don't wait for the storm to pass, love dancing in the rain".

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mombase's picture
Replies 9
Last reply 8/12/2011 - 5:28pm

I had a sleepless night last night as I mentally prepared for my appointment with oncology this morning to discuss systemic treatment options since I had decided not to proceed with the Whole Brain Radiation Therapy. I was very pleasantly surprised to be seen by the head oncologist, Dr. Rajappa. He was so awesome and had all of the qualities I hoped a great oncologist would have, i.e., thoughtful, smart, engaging, optimistic, calm,...everything!  We decided that I would have a new baseline body and brain MRI/PET scan in the first week of September. I would then start either the new B-RAF drug (if I was positive for the B-RAF mutation and if it is approved by then, which it should be), or Yervoy if I was negative for B-RAF mutation, somewhere around the middle to end of September.

Dr. Rajappa made me feel so confident and hopeful with this plan, regardless of which one was followed. He was going to call pathology at David Grant Hospital to find out if the B-RAF results were in yet, and then he said I would be called immediately when he found out. I was on the light rail on the way home when the call came in...I am positive for the B-RAF mutation!! The people on the light rail must have thought I was crazy...I was crying and doing the Happy Dance at the same time!! I am so grateful and saddened at the same time for the people whose names I recognize now, and who found out that they were negative.

The good news now is that U of Penn researchers just discovered a way to make our good T-cells attack cancer cells and then multiply instead of dying off. This was tried with a few leukemia patients with outstanding results. Now the trials will be expanded to larger samples and different types of cancers.

The bottom line is...the cure for cancer is seriously right around the corner!!

Getter done!

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MariaH's picture
Replies 9
Last reply 8/12/2011 - 5:21pm

As I mentioned previously, Dave went down to NIH and did not qualify for their TIL study.  However, they did test him for HLA - which I know was to see if he qualified for the ESO and MAGE trials.  However, I don't understand what purpose HLA has in melanoma treatment.  I know for the ESO and MAGE trials, they extracted the white blood cells from your blood stream, which is different then the TIL study (they use actual tumor).  He tested negative, which the nurse said is just "genetics".  But I am curious - what role does it play?

Thank you, as always....

Maria

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Jan in OC's picture
Replies 7
Last reply 8/12/2011 - 3:23pm

Well, we made it to Houston...staying in a hotel and all our stuff is on the U-haul in the parking lot!!  Evidently we arrived at the busiest time for moving and have not found a place to rent yet.  Was hoping to get it done before Dirk's MD Anderson visits...oh well....I'm sure we will have a home soon!

I have to say, our experience at MD is light years different from UCLA.  It used to take weeks to get an appointment for any tests there.  

We went in yesterday morning, saw Dr. "Papa", and in the afternoon went to get an MRI.  Got the call today,  tomorrow they have scheduled ECHO, Complete Pulmonary Function Test, and CT.  

Friday, its back to meet a Dr in targeted therapy and Dr Papa again!!  Then we will decide which treatment plan to go with.  I even met our Patient Advocate and and spoke to the Social Worker yesterday. Never spoke to anyone at our last place.  

We are still in a washout period from the E-7080, so it seems like new spots appear every day.  Dirk gets tired easily, but is very excited about the team approach and liked Dr. Papadoupolis!!  We are hoping for good things.

Jan (formerly in OC, now a texan, LOL), wife to Dirk

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So here's the update...thusfar. My dad has a superficial malignant spindle cell carcinoma invasive to Level IV. He's scheduled for a WLE Aug 24th & they'll do a SNB then, too. I was told this is a spreading type of cancer so now my question is, Should the surgery date be moved up??? They said that after the SNB and WLE they will send the biopsy to the Mayo Clinic. If need be the case they will schedule a full body PET Scan depending on the results, and he will then have to meet with Oncology. Please tell me your thoughts on all this,

Thank you all again for all your help, knowledge & experience.

Worried Daughter

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Lisa13's picture
Replies 6
Last reply 8/12/2011 - 12:54pm

Tomorrow is my first day of ipi (yervoy).  I'm a little nervous about potential symptoms, but other than that, I'm hoping and praying that this treatment will work for me. It's my birthday on Saturday, so that has to bring me some kind of luck :)

I have a busy month ahead of me - my birthday, a wedding to go to, moving into a house - all celebratory things which has been keeping my mind very busy through all this nonsense.   As much as I want to have symptoms to feel like this might be working, I hope it doesn't prevent me from enjoying all these wonderful things.

Prayers and Positive Thoughts to you all!

Lisa

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

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NYKaren's picture
Replies 3
Last reply 8/12/2011 - 9:43am
Replies by: NYKaren, triciad

Hi again,

Just got home from seeing Dr. Wolchuk.

PET showed no new activity except a tiny spot in my lymph node, which Dr. W thinks is the Ipi, especially since he didn't feel anything there upon exam.   He said he's seen people get much worse at week 12, where I am now, and respond completely by week 16.  Here's hoping.

I'm seeing Dr. Halpern Monday; he will biopsy one of the small pieces near my eye. (he's head or co-head of Melanoma service @ Sloan.

Dr. Shaha, the surgeon, is bringing my case to the "Head and Neck Surgery Board".  Normally they wouldn't hesitate to try to excise again, but the location is so difficult and also would entail a large graft--nothing left to stretch together!   

Dr. Halpern did say that if I don't respond that we should consider IL-2 (at Yale) or Chemo.  Of course I didn't write down what he said, but the Chemo would be a mix of 3 separate drugs.  He said that only a small percentage of people respond to IL-2, but those that do have amazing sustained results. 

Stay tuned, and thank you for the support,

karen

Don't Stop Believing

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bekahboo82's picture
Replies 5
Last reply 8/12/2011 - 9:20am

Hi there everyone.  I have been following the board for a few months and have been impressed with the wealth of information and knowledge.  I have been afraid to post anything because I have "in situ" disease and don't feel like it's my place to ask questions when there are so many people here with real problems.  But I have mustered the courage to ask a few questions as everyone seems to be so open and willing to help.  So here goes.

As I stated above, I was diagnosed with Melanoma in situ (Mis) Sept. 2009.  The path from the shave biopsy showed the lesion extending to the lateral margin.  I was treated with a WLE and the path came back as "scar and fibrosis with no evidence of residual neoplasm."  I now see my Derm every 6 months for skin checks.  Should I be satisfied with skin checks or should I request a PET/CT scan "just to be sure?"  I have also heard talk of "mitotic rate" of which my path report didnt address.  It also didn't talk about Breslow depth either.  And I am asuming Clark level I since it was in situ.  Is there not mitotic rate or Breslow depth with in situ disease?  I am sorry if these are dumb questions.  I am just trying to get a grip on the whole thing (still 2 years later none-the-less) and I want to do everything I can to catch these early if I am prone to them.  I am 29 years old and plan to be dealing with this for a long, long time.  Thanks to everyone who can offer any answers/advice!!

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