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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MsKage's picture
Replies 2
Last reply 2/4/2011 - 2:47pm
Replies by: MsKage, lhaley

Hello smiley  I had a recent PET scan, which showed slightly increased intensity in a spot that's been lighting up in my chest for a few months (but only 2.7), plus a new spot in my hip at 4.4 SUV.  The report suggests MRI with contrast to further evaluate the area; my doctor ordered a CT scan, though.  I am a little confused on which is more appropriate and in what situations.  I would like to see a specialist soon, but am very far away from any and also want to get the ball rolling on these scans.  I'm currently stage 3A... hoping it stays that way...  any input is appreciated, there is so much information to learn and things to consider, it's very overwhelming. Thank you.

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Anonymous's picture
Anonymous
Replies 2
Last reply 2/4/2011 - 1:31pm
Replies by: Sherron, KellieSue

It is with great sadness that I read that John Brian Becker (JB) passed away this morning 02/0/11.  

Free from pain now and watching over his beloved JSP.

You may have followed their incredible blog:  http://www.bothofus.org/ 

Luke 1:37

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Met with radiologist and neurosurgeon today.  Some of ya'll with experience may can help me solve this delima, as I think Drs. will respect my wishes:

1) A 1mm slice MRI will be done Tuesday to see if any more smaller spots shows up-he suspects it's highly possible.

2) Dr. says if multiple smaller spots DO show up, then I may want to do WBR (whole brain Rad.) 1st to shrink/retard/kill? ALL the smaller spots while bigger spots can be held at bay-  then do cyber-knife on bigger spots 3-4 wks. from then.

3) My concern is the fear that if I don't go ahead and get the 5 mm (plus or minus) two spots on each side of Basal Ganglia and the 4 mm spot on Thalamus, that they COULD? grow during WBR and IF they did they cannot be surgically removed IF they got too big for even cyber-knife to erradicate.

4) Either way I'll be doing both proceedures.  Just trying to weigh odds of which to do 1st.

5)  am I making any sense?  Bottom line:  Have any of you been faced with this delima?  Regaurdless, what would you do?  Just looking for direction from those with any similar experience.

Thanks for ANY input, I'll take all i can get!

PS. did like and feel in good hands with my Drs. at Baptist Memorial in JAX, FL.  Dr. Olson-Radiologist/former NIH researcher, and Dr. Chandler, neurosurgeon.  Both seemed very well versed in melanoma brain mets., however, i've come to a point to trust my own instincts combined with real life experiences of others.  My gut tells me to zap out the bigger and/or inaccesible mets first via cyber-knife, then worry about any smaller spots with WBR, even if 20 under 2 mm spots are found and my grow some while waiting 3 wks. btwn. cyber-knife and WBR. 

Please give me your opinion; if i'm making any sense, that is!

Thanks again & Love to ALL- Grady.

I'm Here for Now, I've got the rest of my life to die; and if so, old age could be overated and God does exist.

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ValinMtl's picture
Replies 13
Last reply 2/2/2011 - 10:36pm

My doctors believe that melanoma has now spread to my left groin (confirmed to me tonight)...was always on my right leg before.  The ipilimumab did a wonderful job of 'stopping' my cutaneous growth problem on my leg but now have several new subcutaneous growths on the right leg plus am swollen in the left groin area. Last scan in November showed 20% increase in left groin area and 30% decrease in right.  I have a Pet scan this Friday and - the 2nd CT scan on 21st to see if I am eligible to re-enter the ipi trial.  The only other option I have here is the Dicarbazine and IL-21 50/50..of course, I would like the IL-21  but with 2 arms of a trial you never know where you end up. They have B-RAF trial but I am negative, darn.

I would like a back-up plan if I'm thrown off the ipi trial. Preferably IL-21 or biochem, is anybody aware of a trial that I could possibly be eligible for, having done ipi and interferon. In the meantime, I keep ploughing through the clinical trials.  Many thanks for any help offered.  Val

Live Laugh Love Nothing is worth more than this day!

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Erinmay22's picture
Replies 11
Last reply 2/2/2011 - 6:45pm

I was diagnosed in Oct with Stage IIIb melanoma (upper right back nodular, sentinel node involved - all others under right arm clear).  I had a CT/PET scan done 11-1-10 that came back clear.  I had a CT scan done 1-13-11 in order to try and qualify for a trial.  That scan showed multiple nodules on both lungs.  I'm trying not to freak out too much - but it's hard not to have some (ok a lot) of anxiety over all of this! 

My doctor said the spots are too small for a needle biopsy.  So my options are wait and rescan in 2 months or a different type of biopsy that is a little more invasive (don't remember what it's called).   Has anyone had lung biopsies done?  I'm hoping it's nothing (since the CT/PET didn't pick them up)...  blood work looks ok so far and I feel pretty good (no fever or cough - do feel like I have a bit of  sinus infection though). 

I guess the blessing is that I switched doctors and they did these scans (if they do end up being something) otherwise I wasn't scheduled for new scans until April.

Any thoughts/encouragment/guideance you have is greatly apprecaited.  I meet with a thoracic surgeon on Wednesday to discuss the biospy procedure.  Guess in my mind I'd rather go thru the surgery for the biopsy vs waiting 2 months... 

Cheers,

Erin

www.melanomaandthecity.blogspot.com "people will forget what you said, people will forget what you did, but people will never forget how you made them feel' Maya Angelou

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davidroten's picture
Replies 0

Has anyone ran into pseudotumor cerebri wife is stage 4 now and has been diagnosed with this condition.

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elefk's picture
Replies 2
Last reply 2/2/2011 - 4:24pm
Replies by: LynnLuc, Fen

I'm stage 4 and my melanoma oncologist is recommending a clinical trial using sutent and avastin together. It blocks the formation of new blood vessels that feed the cancer. Does anyone have any experience with these drugs, eitther first or second hand?

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NicOz's picture
Replies 7
Last reply 2/2/2011 - 3:49pm
Replies by: MaryBZ, KatyWI, NicOz, cindyeh

Won't be around for a couple of days so just wanted to wish you all the best with your surgery. Will be thinking of you and sure you'll find it a piece of cake! Take care, don't over do it when you get home, and get lots of sleep to help the healing along.

Go get 'em, girl!!

Nic

xxx

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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elefk's picture
Replies 2
Last reply 2/2/2011 - 2:05pm
Replies by: Lori C, King

I am stage 4 without ckit or braf mutations. What are your best ideas for treatment?

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Suzan AB's picture
Replies 2
Last reply 2/1/2011 - 7:42pm
Replies by: Suzan AB, LynnLuc

I received hard news today, mets/tumors in my right lung have grown and shown increased uptake.  I have one node in my left lung and nodes above and below my collar bone.  I have read that complete lung removal with treatment has a better survival rate than just getting clear margins (I have a paralyzed right hemi diaphragm with aceiation (misspelled?)  to the lower part of my lung with a large node sitting in there as well as a couple of nodes in the upper part of my right lung too.).  Seeing Dr. at UCSF on Thursday to discuss treatment.  Any suggestions will be greatly appreciated or stories about treatments that worked.

My best to all...I am kinda of numb right now...

Suzan AB

Presently...One Day At A Time.

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Terra's picture
Replies 3
Last reply 2/1/2011 - 7:26pm
Replies by: Anonymous, lhaley, Sharyn

Hi,

My husband, Derek, had lung surgery on Jan 17 for a lymph node in his right hilum, that had been there for 2.5 - 3 years.  The surgery went well, it was longer than expected because the node had grown into the outer lining of his trichea and windpipe therefore they had to take out his entire upper right lobe and part of his windpipe and trichea which they patched up with lining from his heart and then patched his heart up with a mesh.  He is recovering very well, this is his second lung surgery since progressing to stage 4 last spring with a nodule on his left lower lobe.  We are hoping he is now cancer free, waiting to see the onc and schedule a scan, we know there are suspicious spots in other places so we are hoping for a systemic treatment of some kind.  Several onc from the tumour board meetings in Toronto viewed his scans pre-surgery and all agreed there were too many questions about each spot to think any of the others were cancer - hoping they are right!

 

Thank you so much to Tina (& Tony) from Australia who graciously answered my questions about removing a right hilar node and who suggested we get another opinion from a cardiothoracic surgeon vs a lung surgeon - which we did and thankfully after 3 opinins we found someone who said yes it was resectable!  Thank you so much Tina!

 

Terra

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esposir2's picture
Replies 38
Last reply 2/1/2011 - 4:10pm

hi has anyone else been diagnosed  with mucousal melanoma?

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Anonymous's picture
Replies 1
Last reply 2/1/2011 - 2:50pm
Replies by: LynnLuc

Good day,

I am new & trying to learn.

Please tell me the difference between a cutaneous tumor vs sub cutaneous tumors.

Thank you for your help.

MiMi

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MRFUser2011's picture
Replies 10
Last reply 2/1/2011 - 10:54am

I had a CT scan on 1/10 that showed that the lung nodules I have (one in each lung) had grown.  I have been in contact with my previous surgeon and he is very confident he can remove each nodule via VATs.  Today I get the scan results from the PET he requested prior to any surgery.  I normally schedule my scan and result appointments as close together as possible but this time, I had to take first available and have been waiting since last Thursday for these results.  I have done okay with the stress and worry until I did that PET scan and now I am at a point of exhaustion from turning over the possible outcomes in my mind. Have any of you found a way to get around this awful stage from scan to results?  I do meditate and do deep breathing exercises, but it is as if I forget all my "tools" once I get into this place.  I would appreciate any suggestions anyone can offer.  

Shari

Game on. I am going to win! (The thought I had when I heard the doctor say I had melanoma.)

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We are conducting a global study on malignant Melanoma and seek those diagnosed Stage IIIC or IV to participate in one hour telephone interviews.

 

The purpose of our study is to understand the full impact of malignant Melanoma on patients, including the physical, emotional and social impacts.  

 

In the interview we will be talking with you about the journey you’ve been through since receiving your diagnosis, covering topics such as the impact of your condition on your daily life and your experiences with different treatments you may have received. The results will be used to assist in new product and treatments under development for this condition.

 

All information gained is reported anonymous and respects patient’s confidentiality rights.

 

Honorarium is $200 for participation.

 

Interviews may be scheduled between 8AM & 8PM February 16 through February 23.

 

Please respond with interest or questions to contacts below.

 

Kind Regards,

 

Jan Mallery-Groom RN

Clinical Research Support Services

+510-922-9710 / jmallery@comcast.net

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