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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Replies by: arthurjedi007, JustMeInCA, Anonymous, Nell, Bubbles, DZnDef

I have about a 10 x 9 cm tumor in my left shoulder and about the size of a small fist  in my left collar. Kind of looks like a hunchback mass of tissue pressing my left shoulder down a couple inches lower than it should. Keytruda  has helped slow down it's growth but is not enough. Also measuring with a tape measure it has increased 50% since my last scan in early November. From 4 x 4.5 inches to 6 x 6.5 inches. So I think the keytruda is losing the fight at least with this tumor.

My radiation doc has been ready to treat it for three weeks. It would be 45 gray in 15 treatments. He will not do a higher dose because of all the nerves I could end up with a dead arm. He believes the radiation would end the pain, probably return a lot of mobility to the arm. However he's not sure it would decrease the size of the tumor by any significant amount. He's at Saint Louis at Missouri Baptist. Also my Mayo medical onc believes this is what I should do because radiation has worked for me in the past.

My Saint Louis medical onc believes I should do surgery. It has taken three weeks and I should finally hear from his nurse what the surgeon says he can do. At best my medical onc believes the surgeon can remove as much of the tumors that can be safely removed without putting me in jeopardy. At worse they can only remove a small sample. But it is the surgeon who will really have to say. I also suspect it will probably be another three weeks before I can talk to the surgeon and they are fairly ready to start because it seems to take Siteman a long time to get things done. Not saying they are bad it just takes way longer than Missouri Baptist or Mayo which are the only other places I've had things done. I wouldn't be in such a hurry except the choking sensation I'm getting I think from the collar tumor seems to be getting worse fast.

Anyway I have my Mayo medical onc saying radiation and my Saint Louis medical onc saying surgery. I've had radiation four times and all have done me good. Except for a minor surgery to take out a couple Squamish stuff the zelboraf caused I've not had surgery.

Im at a loss of which doc to listen to. Any thoughts?

Artie

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michelle wiggins's picture
Replies 12
Last reply 1/9/2015 - 3:18pm
Replies by: democat, michelle wiggins, KMick, JoshF, SABKLYN, Linny, Anonymous

I had a stage 2A Malignant Melanoma in my thigh that was operated on almost a year ago. (Feb. 27th 2014). I have been back to the cancer center once for a check up (every 6 months), and my next check up will be next month.  My check up 6 months ago was fine, however, just lately,  the skin on my leg surrounding the scar is VERY numb.  Is this normal almost a year after surgery?  I am getting a little nervous, because it just feels odd!

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arthurjedi007's picture
Replies 8
Last reply 1/8/2015 - 11:04am

My doc said yesterday if my tumor sample tests for a certain h receptor I can do this trial. Apparently only 20 percent of us have it.

They take the tumor sample and grow the t-cells. Then two days of chemo to wipe out existing t-cells. Not sure If that is the same thing as dropping white blood cells to zero. Then they inject the new t-cells. When it works he said it is fantastic.

when I said that sounds like the til at nih he said the main difference is how they grow the cells.

So I dunno if this or the til at nih would be better? Very confusing to me.

Artie

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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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Jsneathen21's picture
Replies 4
Last reply 1/7/2015 - 6:21pm

www.gofundme.com/jrmqn4

That is my account I wasn't expecting at all to be off work for 3 months .. I have to have a skin graft and it requires me to be in a wheel chair for almost 3 months ! God bless anything helps! My personal email is jennifersneathen21@yahoo.com

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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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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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Anonymous's picture
Replies 3
Last reply 1/7/2015 - 4:01pm
Replies by: Anonymous, JustMeInCA, Janner

What are the statistics/odds that someone with mucosal melanoma will develop a new primary that is cutaneous?  Does anyone know? 

If you have superficial spreading melanoma, is it likely that you would develop nodular melanoma somewhere else, or more likely that you would develop the same type?

Has anyone had experience with this?

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_Paul_'s picture
Replies 7
Last reply 1/8/2015 - 12:02am

I tried to Google this and the best I could find was that these are apparently areas of the lung that contain sub-solid matter. My PET/CT from 4 months ago had a bunch of them, now they are no longer seen. Can I take this to mean that multiple tumors in my lungs have disappeared?

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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.

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Ok so apparently my slides were examined by Raymond Barnhill from UCLA! He is a Melanoma expert! And he can't even determine the melanoma ... But he recommend the SLNB and the wide excision. Does any one know this expert at all?!  What can you tell me about him? My surgery is next Tuesday I have to have a skin graph on my leg ... They are taking skin from my stomach... Dr said I will have to have a cast for 1-2 months and be in a wheel chair in order for the skin graph to heal properly... So far I just know that from the sentinel node biopsy I will have a drain... Wow all this Is so overwhelming...

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democat's picture
Replies 14
Last reply 1/8/2015 - 4:07pm
Replies by: democat, kylez, DZnDef, Randy437, _Paul_, Maureen038, Janner, Anonymous, SABKLYN

I hate waiting for scans and scan results.  I am distracted at work, and have trouble making future plans.  What are your techniques for dealing?

Also, how do you deal with people who say "I'm sure you'll be fine"?

Roxanne

Stage IIIa/IIIb

since 1/2013

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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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Replies by: e6cag1u, Janner

HI there!

 

I am looking for advice and feedback! My brother was told today that he has melanoma - he has it on his back. He showed it to me on Christmas and I urged him to go to the doctor to have it looked at. They cut it out and biopsied it, he had stitches out today and was told the results were melanoma.

I am sorry but that's all he told us and that the doctor said he got it all when he did the biopsy and nothing else needs to be done about it.

I don't believe that's all the doctor said, the growth was bigger than a nickle but smaller than a quarter and was about 1/8 of an inch or more raised off his backl...dark red/black/white and just plain ugly looking.

Does this sound like something the doctor would say without further testing...that the biopsy "got it all"???

I think my brother found out today that he has cancer and is choosing not to deal with it...

 

Any feedback on experiences with melanoma and what happens after detection is greatly appreciated! Thanks everyone and I am sorry for those dealing with this disease!

Alicia

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