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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Bubbles's picture
Replies 10
Last reply 1/7/2015 - 11:26am
Replies by: rick1981, Anonymous, Bubbles, Cooper, arthurjedi007

Thought many of you would appreciate this information regarding the positive synergistic effects of radiation and anti-PD1.  Here is a synopsis an article just out:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/12/srs-combined-with-anti-pd1-makes-things.html

Here are a couple of older articles regarding the positive effects when radiation is combined with ipi:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/01/ipi-and-radiationa-good-combo-for.html

And Artie....YOU ROCK!!!  Happy holidays!  celeste

chaoticallypreciselifeloveandmelanoma.blogspot.com

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arthurjedi007's picture
Replies 21
Last reply 1/7/2015 - 10:21am

I just don't get it. I'm not sure what I'm asking. I probably shouldn't post this and bother everybody. It is just very upsetting to me.

Back in November once my local doc got them to compare with the correct scan (ie: 11/3 with 8/13) the report basically said mild growth. No new stuff. And listed the left scapula tumor had grown.

My Mayo doc wanted a copy of the scan and I just got their report which seems more grim. For example what they say has improved is what was radiated. The spot in my head and my lower thoracic and upper lumbar. Sooo has pd1 quit working for me? I've only been on it since 5/21. I just don't get it. I'm especially concerned by the midthoracic spine because that was listed as shrinking in the 8/13 scan but here it seems to be increasing. It is the one that almost paralyzed me last year and has already been radiated twice and surgery they can't do on it cause if they shut off the artery to it would also shut off the spinal cord thus paralyzed. So if that gets bad again then it is the end of the ball game for me.

I know I don't have much strength or energy. I also have to take 2 pain pills a day just to get by mainly due to the pain in the shoulder and collar. But if I don't do much I feel fairly well. I can go to the buffet ok and due to my walking issue with the hip and leg tumors I can ride the cart and the grocery store fine but not walk it anymore. But I do tire out very quickly. I used to be able to walk 2 miles a day but with the leg and hip issues I only walk about 4 five minute walks a day.

I thought the keytruda was working great but now with this report I dunno what to think. I was planning to stay on pd1 for quite a long time and get my shoulder radiated soon as the next step. Now I just dunno. I'm totally dumbfounded. If pd1 is no longer working the best option I have that is geographically possible from Saint Louis is travelling to Chicago and hope and pray they let me into the pd1/anti-lag-3 even with my limp. But without radiating this shoulder first such a 10 x 9 cm tumor is just too big for my immune system to handle. Also my ldh has been steadily increasing ever since last March and is up to 722.

Or maybe I'm jumping to conclusions and the pd1 is doing good like the Saint Louis report said. After all this Mayo report doesn't list anywhere near the 30 or so tumors I have. I just don't get it how there could be such a difference in interpretting the same scan. I know last year Mayo interpretted a lung issue as tumors but it was really inflamation so I'm not really concerned about that since I have no breathing issues at all even when I do my deep breathing exercises. From what I've read with immunotherapy it can be tricky to interpret the lungs.

Sorry to bother everyone with this. I'm just totally dumbfounded. I see my Saint Louis doc tomorrow. I know he wanted me into NIH back in November when they mistakenly compared the 11/3 scan with the 4/23 scan but my hip and leg went out so they wouldn't let me in. Since then he's been fairly quiet on plans except I want to radiate my shoulder and he wants to do some kind of tumor sample first but that's already been an almost 3 week delay so far. So I dunno. I just don't get it. I think we are probably due for another scan in the next 3 weeks so I dunno.

 

Artie

 

Here's the Mayo report.

EXAM: Interp of OS NM PET Scan dated 11/3/2014.
COMPARISON: Mayo Clinic PET/CT 8/13/2014
CLINICAL INDICATION: Restaging metastatic melanoma, subsequent
treatment strategy.
IMPRESSION: Overall probable progression of metastatic disease
FINDINGS: Interval progression of some of the bony metastatic disease
with new or increasingly FDG avid lesions located in the left ischium,
right humerus, midthoracic spine and left sacrum. Additional FDG avid
lesions are present in the mid right femur and proximal left tibia.
Other pre-existing metastatic bone lesions have improved, for instance
the right posterior occipital bone and several vertebra in the lower
thoracic and upper lumbar spine.
The large bone and soft tissue metastasis in and around the left
scapula has increased in size and FDG uptake, SUV Max 15.0, previously
11.8. There is also been an increase in the size and extent of FDG
avid lymphadenopathy in the left neck and left supraclavicular fossa.
New pleural metastases in the posterior left lung and increasing FDG
avid soft tissue nodule adjacent to the posterior aspect of the upper
pole of the left kidney.
No abnormal uptake in the liver or cerebral cortex. Incidental CT
findings are generally unchanged.

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ymellin's picture
Replies 4
Last reply 1/7/2015 - 10:10am
Replies by: Anonymous, Janner

When have a diagnois of melanoma is it best to seek out a doctor who speicalize in just melanoma cancer?

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Replies by: Anonymous

Do not have any words in the car live event can you log I use cheat me at meet the lucky and tell me if were alive homes in the chartroom or want to see what works was a timely home I know will use Queer make you see me the bullying you know trying to stop so but I have our which one long but also is it was sitting right next night I hearing were already attack are not 

TesteroneXL

cute when what not own hello YouTube when teams did what many I'm here with my only my only people who are you know and I know aren't so sure unless they are you home schedule yesterday I was love you too are quitep.m. Eastern Time well any other respecting quietly 15 either typical duties opposite but gippermorning still have difficulties are fine going to everybody and it should be good fish HEB law I P by Michelangelo at it what we all or tension I think it’s it's huge blow to which I want to chat room that tell me if you can't see me in here me how we do party is in I'll new I sheet he also art show well I will watch well it's not what you just know it was basically what quite clear in its ohm folk reviews of how I ever in a week which is to me is Sunday so it turns 18 you well are why do so many people are yeahwell so Motrin basically how I put my music.

http://www.optimalstackfacts.org/true-facts-about-testeronexl/

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Replies by: Anonymous

Everyday get to listen to the teachers there with the children you can't listen to the parents terrorizing your child's play at Ministry are with the other neighbor kid she grotto you listen to the doctors I'm you know I mean its hard raising child start raising more human show up tile and the bigger support system you have the better of your enemy and the more children or people who love your children pair of their going to be seven-member that when you know you like mad at familyUltra Thin Completemembers such as your mom or your mother-in-law I'm here for the kids to see them remember that the more people who love your child the better of that town is going to be I think that's very important we're going to exercise degum name ion I'm terrible at exercise I gingerly way between 120 to 147 I'm right now I'm about 124 on I'm little flabby in this to make I probably have over too much at night Ibis that I did not exercise sometimes I what they don I should get more that now I just an exercise that often I downright I have a really bad angle and be and my right leg and I'm I can't really read I can't walk for extended periods of time killed a.

http://www.maletestosteronebooster.org/ultra-thin-complete/

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Anonymous's picture
Anonymous
Replies 0

Can one of you admins please block this idiot?

Stage III, Unknown Primary; 1 positive node in left axilla; currently participating in GSK DERMA (MAGE A3 vaccine) trial

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Sherman's picture
Replies 10
Last reply 1/7/2015 - 4:35am
Replies by: JustMeInCA, kylez, Sherman, washoegal, DZnDef, Anonymous
Recently diagnosed with Metastatic Melanoma. A brain tumor was found in the cerebellum and CT showed multiple nodules and a large mass in my lungs. After lung biopsy I was diagnosed with Metastatic Melanoma and referred to Dr. Omid Hamid in St. Johns medical center. Does anyone have any experience with this Dr or any recommendations to another oncologist? I hear good things about this melanoma center but Dr. Hamid has only 2.5 stars out of 4. Any advice at all? Please help.
 

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rick1981's picture
Replies 9
Last reply 1/7/2015 - 4:07am

....panRAF inhibitors.

Stage 1 trials just starting. These pills seems similar to BRAF/MEK in attacking proteins but use multiple paths making them potentially impossible to become resistent too. Promising!

(I can't paste the link unfortunately, anyone else having issues pasting text on MPIP?!)

 

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Anonymous's picture
Anonymous
Replies 1
Last reply 1/6/2015 - 7:25pm
Replies by: SABKLYN

Has anyone been treated by Dr Pecora out of Hackensack Medical Center?   My father was diagnosed with anal melanoma in the spring.  Large mass 5.6 cm was removed w clear margins.  Pet/CT scan were all clear.  Dr Pecora, who is actually listed on one of the melanoma websites as being "a specialist", looked "puzzled" when his scan 8 months later showed nodules all over his lungs.  From what I have read about anal melanoma, there is nothing unsual about it spreading to the lungs that quickly.  I am still shocked he didn't follow him more closely, suggest some sort of precautionary treatment, or in the least, stressed how deadly this type of melanoma is.  

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JoshF's picture
Replies 5
Last reply 1/6/2015 - 7:04pm

I have an MRI coming up on Wednesday for the mass near scar on rt cheek. The surgeon was between watching & waitng or doing MRI. I think that he opted to do MRI because how anxious I am. He said he really felt that it was scar tissue as tissue is hard, fibrous but doesn't have the nodularity. I told him I've dug in there so much that pushing, prodding & squeezing in different directions, you can get a different "feel". I'm just worried that an MRI won't show anything or be inconclusive which will just lead to surgery to biopsy. I've been down this path before. Of course I'm at a loss again, you can't help but think the worst...what are chances of it being scar tissue? Difference this time for me is that's isn;t as clear cut. Last time....you can do the "lobster claw" with one finger inside mouth and one on outside of scar, rub over it and feel the nodule. I'm constantly digging in the area and my face hurts but it's driving me crazy. What are chances MRI can be conclusive between something Benign or another reoccurence? I just had CT scan of facial area, neck, chest etc... in October which was all clear.

 

Josh

Let's work for better treatments....for a cure!!!!

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My daughter was diagnosed with a primary tumor in arm (mole) that spread to only one lymphnode in 2011 at age 20.  We took her to Moffit Cancer center where they removed all lymph nodes and the rest were all clear. She was staged 3a. In October of 2014, the same year they had graduated her from six month scans to yearly scans, it was found out the melanoma has now metastasized to the right lobe of liver. The tumor is 15cm. She had an immediate embolization done to liver and her last Yervoy treatment is next Wed. Although the Oncologist believes she has a fighting chance, I am of course worried! Can a tumor this size be shrunk by yervoy, the emobilization? We are all still waiting to see if she has the BRAF mutation. 

i guess my main reason for this post is that soon she will have the scans to see if the Yervoy has worked and I'd like to just ask anybody if they've had success with the mentioned treatments this far. How soon will they be able to tell if this is working? Do blood levels help determine? Are there other treatments if this doesn't work? 

im so glad I found the board. Thanks in advance  for any advice or success stories. God Bless.

Jacque

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Happy_girl's picture
Replies 23
Last reply 1/6/2015 - 12:13pm

I know this topic has been brought up before.  I have tried to do a lot of research about it on my own. Is there a true correlation between pregnancy and melanoma.  I was diagnosed 6 weeks After giving birth to our first baby.  She will turn 1 in a month. ( hard to believe! :). We are not ready to have another one yet, but I have just been thinking about if it's a reality or not to even think of having another baby.  I went to mskcc for a 3rd opinion.  The dr I saw there, when having more children was brought. Up, said wait about 3 years.  My oncologist at the james center (Ohio state) said wait a year.  I'm just curious what your thoughts and opinions are.  I want to have another one, but also don't want to leave my daughter and husband.  I'm not sure what to think. Help! 

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Anonymous's picture
Anonymous
Replies 13
Last reply 1/6/2015 - 9:45am
Hello all,
 
My son started PD-1 for sarcoma at Dana Farber. He is the first pediatric who is prescribed for the medicine (Merck MK-3475) and his oncologist does not have experience with it.
Since I am an avid reader of the forum, I was thinking that posting here might help me with my concern with the current treatment efficiency. Could you please let me know if any of the following behaviors were related to a good/bad response.
 
The tumor is in his neck lymph nodes. My son's had many cycles of chemotherapy cycles before this treatment, radiation and surgery. He is prescribed for 2mg/kg of the MK-3474 (Keytruda) every 3 weeks. He received the 2nd dose 2 weeks ago. I dont know if the tumor responding and would like to ask if any of the following visible signs are familiar to responders
- the tumor "moved" from the "original" location to a lower location in his neck
- The tumor surface became "bumpy" and not a round ball (the way the previous tumor was formed)
- the tumor has red areas (not all of it - I can attach a picture if needed)
 
As some of you reported - he is tired, complaining about pain in his legs (not sure if this is a joints pain), headaches, pain at the tumor's area and around his eyes.
 
Please let me know if any of the above sounds familiar to you.
 
Many thanks & Happy new year,
Mom

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Jocks wife's picture
Replies 10
Last reply 1/6/2015 - 2:00am

I a stuck between a rock and a hard place and hoping somebody (ies) out there can shove me in the right direction.

I have been stage 4 for 3 years, adrenal, pancreas and 3 subcutaneous surgically removed 3 years ago after short spell on Zelboraf to shrink things a bit. Have been going great since then with no probs until boxing day...3 more subcutaneous and the other adrenal gland this time.   

I live in New Zealand so we are a bit removed from some of the opportunities that exist in more populated regions, however there are two spaces available here in the Merck ipi/mk3475 trial, and I know the results from the phase 1 trial look super impressive,but after 3 years disease free from last surgery and the relative ease of the surgery involved that seems like a good choice too....however the chances of me getting on another trial at a later date would be nil if the surgery is unsuccesful. 

 

I did wonder if the best choice might be to start the trial and if i have no response in the short term i could get on to zelboraf to shrink things again and then have surgery...

I am feeling the gravity of this decision weighing heavily on my shoulders, there is just so much to lose....

 

Thankyou

 

Hope is a much more powerful emotion than fear.

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AshleyS's picture
Replies 14
Last reply 1/5/2015 - 9:06pm

I am a 31-year-old wife and mother of two. I live in rural North Dakota and have recently been diagnosed with Stage IV Melanoma.

In August of 2013, I had a mole removed from my lower left calf. It had a Breslow thickness of 1.95mm. My surgeon completed a wide excision and I had a skin graft. I also had a sentinel node biopsy which came back negative. A few weeks later I had a PET scan and it came back clear. I began seeing a dermatologist every 3 months. She found a small melanoma and an atypical melanoma on my back. I had them removed and continued care with her.
 
In July of 2014 I found an enlarged lymph node on my left groin; I was 20 weeks pregnant at the time. My local surgeon removed the lymph node and it came back as melanoma. I was sent to Mayo Clinic in Rochester, MN because my local doctors didn't feel they had the skill set to treat me. At Mayo I had a head, chest, abdominal, and pelvic MRI (only an MRI because of the baby). The only thing that showed up was in my left groin. My doctors decided to perform a lymphadenectomy and found 4 lymph nodes involved. We decided to induce at 37 weeks and begin testing after that.
 
I had my son on December 3 and a PET scan on December 8. The scan showed tumors on my right shoulder, left hip, lower lumbar, and several on my liver. I again went to Mayo. There I had a liver biopsy and it proved to be melanoma. I also had a head MRI which was clear. One of my tumors was tested for B-RAF, and that came back negative.
 
My oncologist at Mayo prescribed chemotherapy - taxol and paraplatin. I go once a week for three weeks and then get a week off. I will do this for two regimens and then have another PET scan.
 
From the basic research I've done, melanoma is not best treated by chemo. I have too much to live for to waste time with something that will not work. 
 
Where should I go for another opinion? What kind of drugs may work better for my case? What questions should I be asking?
 
Thanks so much in advance for the advice. 

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