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: 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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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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Alissa H's picture
Replies 4
Last reply 1/8/2015 - 3:19pm
Replies by: Minnesota, AshleyS, Alissa H

Hello,

I was diagnosed with Stage IIIb melanoma in 2010 and I have chronic, but minimal lymphedema in my left leg due to my lymphnode dissection.  I am in my early 30s and am considering starting a family this year. 

I would love to talk to anyone who has had lymphedema related to melanoma in one or both legs and who has gone on to carry a pregnancy.  I cannot find anyone in my situation and I am just craving a chat with someone about how their lymphedema progressed during the pregnancy and whether things got back to normal afterwards.  Any information at all would be so helpful.  Thank you so much,

Alissa

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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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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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Anonymous's picture
Anonymous
Replies 2
Last reply 1/5/2015 - 6:43am
Replies by: Squash, Anonymous

I had surgery almost a year and a half ago. I've noticed a small somewhat soft bump close ot scar. I did some looking on this site and see people talking about hard painless bumps. Some were cancer others were scar tissue. My dermatologist thinks it's collagen buildup and aid it can happen for 1-3 years after surgey. He wants to just keep checking at appoinments. Can you tell me what I should really look for? Is there a chance there is cancer vs. scar tissue or some build up? Don't know what to do, I'm really scared.

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

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ashlee12's picture
Replies 7
Last reply 1/5/2015 - 7:51pm
Replies by: DZnDef, Anonymous, ashlee12, Janner

Since being diagnosed with melanoma that was insitu.. Well it wasn't even stage 0 yet but on the path to being there..

In just curious I have done my research they send all biopsys and wle to a dermatologist which I heard is a good thing.. So how good of a chance is it that they missed something or could miss cells that are bad after the wle?

And secondly I know I'm at a greater risk for developing melanoma again .. I already am diagnosed with a anxiety disorder so I do stress everyday about this.. I do have a couple moles that I am keeping my eyes on .. I have shown my derm and surgeon some of them which they think to be no concern.. Well I'm still keeping my eyes on them they have not changed in a couple months... So is it safe to say I'm okay to show him at my febuRay follow up?

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know I'm at a greater risk for developing melanoma again .. I already am diagnosed with a anxiety disorder so I do stress everyday about this.. I do have a couple moles that I am keeping my eyes on .. I have shown my derm and surgeon some of them which they think to be no concern.. Well I'm still keeping my eyes on them they have not changed in a couple months... So is it safe to say I'm okay to show him at my febuRay follow up?

ashlee12
 
Posts: 4
Joined: 17 Dec 2014 19:10
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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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Happy_girl's picture
Replies 24
Last reply 1/28/2015 - 9:56pm

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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