MPIP: Melanoma Patients Information Page

Register Login Help

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.

Expand/ Collapse Topic
 
Replies By
View Topic
EricNJill's picture
Replies 11
Last reply 8/5/2010 - 12:34pm
Replies by: Anonymous, EricNJill, ValinMtl, Sharon in Reno, MichaelFL

I put together a list of resources that I found here on MPIP.  I posted it to my blog and wanted to share it with you.  I can't take credit for it, I just compiled all the information.  I hope you find it useful.

www.melanomasucks.blogspot.com

Login or register to post replies.

JenC's picture
Replies 6
Last reply 8/5/2010 - 11:20am

Today we got the results that my husband is positive for the BRAV600E mutation and is so far eligible for the Roche trial.  Tomorrow he goes in for scans and blood work then if he passes, he'll get randomized next week.  This is such a relief since he has numerous subcutaneous mets in his throat, face and neck which is causing him to be in pretty severe pain.  I am so happy that he can start getting some treatment - even if it is dacarbazine, since he has been feeling these tumors since April and we've been told they are inoperable in the beginning of July.  Waiting is so hard!  Please pray that his scans are good and that he can move forward!  Thanks!

JenC

Login or register to post replies.

SarahS's picture
Replies 2
Last reply 8/4/2010 - 7:13pm
Replies by: SarahS, jeanne harvey

Hi everyone,

I'm wondering if anyone has any suggestions for an excellent derm and onc in the Kansas City area? My husband and I are currently relocating to Overland Park, KS from Massachusetts this summer and I'd really like to line up my doctors as soon as possible. I've unfortunately had several primaries since 2003 (two at stage 1, one at stage 3a), so I'm looking for a very thorough derm and also an onc who specializes in melanoma.  I'm willing to drive up to an hour away or more for the right doc.

I'm seeing my onc in Boston on Wednesday, so hopefully he'll have some names for me, but any suggestions by patients would be greatly appreciated!

Thanks in advance for your help!

Cheers,

~SarahS

Never say never...

Login or register to post replies.

In Stage IV melanoma patients, a high percentage of Tregs appears to be associated with shorter survival.

Remember I said "Blame it on the Tregs!!!"

Received 12 February 2008 published online 03 June 2008.

Background

Melanoma often elicits a profound immune response, and this response has been exploited by various immune therapies. These immunotherapies ultimately fail, however, and advanced melanoma is uniformly fatal, suggesting the development of an immune escape mechanism. In this study, markers of immune escape including regulatory T cells (Tregs), dendritic cells (DCs), and TGF-β were evaluated in 14 Stage IV melanoma patients and correlated with survival.

Source:http://www.journalofsurgicalresearch.com/article/S0022-4804(08)00344-2/abstract
 

Just follow the Science!!!!!!

 

Results 

Stage IV melanoma patients had a doubling of regulatory T cells compared to both normal subjects and stage I melanoma patients. There was a significantly higher number of DCs in all melanoma patients compared to normal subjects. Stage I melanoma patients had a significantly higher number of pDCs than normal subjects, and all melanoma patients had a higher concentration of mDCs than controls. Serum IL-4 and IL-10 were not detectable but serum TGF-β levels were significantly higher in stage I and stage IV melanoma patients compared to normal controls.

Conclusion

 Advanced melanoma is associated with increased numbers of circulating dendritic cells and regulatory T cells. These data suggest that melanoma induces immunosuppressive DCs and regulatory T cells in the systemic circulation.

Source:http://www.springerlink.com/content/k0gk8740u3n75744/
 

 

Take care

Jimmy B

 

melanomamissionary.blogspot.com/

 

 

 

Login or register to post replies.

Linda/Kentucky's picture
Replies 5
Last reply 8/4/2010 - 3:23pm
Replies by: JenM, wolkies, jag, donaldg

Just wondering if anybody has any information on an oncologist at Sloans-Kettering hospital in New York?  Thanks

I can do ALL things through Christ who strengthens me! Phillipians 4:13

Login or register to post replies.

We’ve received a request from a reporter who is looking to speak with women who have previously been diagnosed with advanced melanoma and who currently live in DC or the surrounding area.  If this sounds like you, and you’re available this Sunday evening (Aug. 8), please let me know by sending an email with your contact information to: tturnham@melanoma.org.  We’ll follow up with more information.  Thanks.

 

Tim

Login or register to post replies.

JenM's picture
Replies 2
Last reply 8/4/2010 - 8:48am
Replies by: JenM, James from Sydney

Hi all,

Some of you have replied to my previous posts---thank you so much.  I just thought I would re post again and see if I could get more replies.  I started Nexavar last Friday.  Wanted to know what side effedts people experienced?  If your response was positive how much time passed before you started to feel better?  Was it 2 weeks or longer? 

Thanks,

JenM

Login or register to post replies.

Kimmer's picture
Replies 2
Last reply 8/3/2010 - 11:11pm
Replies by: King, Carver

I had the SNB/WLE and skin graft that, I think,  was the true beginning of  my journey through melanoma.  I remember finding the board and being too afraid to even look at the posts as I am superstitious beyond belief! 

SO six years, lost pathology, BCC, one recurrence, SCC, 2 atypical moles and dozens of biopsies have put me in place where fear is a bit of a more tame monster.  My dear friend, Carver, once said that somebody has to be on the good side of the statistics.  Goes to show how powerful words can be, 'cos that one kind statement gave me a completely different perspective.

In all honesty, I can say that this site helps people.  It is different now, but the fact remains that it is still here and there are still so many people here with so much to give. 

And I thank you all from the bottom of my heart for your support and friendship.

Take good care, K.

PS I recently created a profile for the first time...I always thought that it would make it all to real to have an archive or something...geez, superstition and all...  Amazingly, I didn't blow up.  Silly, silly me!

And remember, no matter where you go, there you are. Confucius

Login or register to post replies.

Fen's picture
Replies 4
Last reply 8/3/2010 - 5:22pm

 Yesterday I noticed the info to the left of the messages indicating how many people are online.  The number has varied from 50 to over 200!  I find this new format difficult to learn too, but so many of you have knowledge, insight and compassion - don't give up on the board.  Many people are counting on you.

Login or register to post replies.

debbieVA's picture
Replies 18
Last reply 8/3/2010 - 12:42pm

 MPIPers...

It's that time again.... happy and blessed to say ...ALL's CLEAR.  Been a long journey since 2006, but thrilled to remain NED and Healthy! 

The important take away is....always have hope.  Never give up.  I can still picture my Medical Oncologist at Johns Hopkins telling me I had '6-9 months, Stage 4 prognosis usually under a year'..and all he offered me was a vaccine trial.   I have exceeded my 'expiration date' by 34 months and remain NED.  

Always be your own ADVOCATE.  Find alternatives, go for the 2nd, 3rd, and 4th opinion.  Don't stop until YOU are ready to stop.  Be the Captain of your medical team.  Find a Melanoma Specialist to Co-Captian and the rest of your support team will fall in place.  

Wishing you all good health and happiness...

 

Debbie Stage 4 NED (IL-2 Complete Responder, 57 infusions 2007-2008)

PS....Like the set up of MPIP BB....looks good !

Login or register to post replies.

I was wondering if we  had any other patients / lurkers / caregivers dealing with leptomeningial mets.  I know Kevin from Atl and I have them, right?  Hope you're doing well Kevin - I'd love an update when you feel like it.  We can compare notes on my intrathecial IL2 vs. your ipi plan.  Have you been able to continue that in TN?

I am still at once a week rounds (one day admissions inpatient each week for the dose).  But I am getting close to moving to once every two weeks.  At least that's MY plan, lol.  Dr. Papa may have other ideas.  I know he's had a crop of patients who have had some success with this.  I'd love to hear from some others who have done this.

The treatment is definitely tolerable in comparison to bio chem.  Of course with bio chem as the standard by which all are judged it's pretty hard to imagine ANYTHING that wouldn't rate as "well, at least it isn't bio chem!".  I stay in patient for 23 hours and then have a few days at home as a vomitting, moaning vegetable, then a few days of more normal couch potato "at least she's here" kinda days.  Then if I'm lucky I have a day or two of "good" productive unmedicated days.  Just in time to start all over!  If I go to another week off then it will be great! 

Side effects are pressure headaches, muscle aches, severe dry mouth, vision changes, naseua, dizziness, etc.    Now I think it may be screwing with my hearing - everything sounds muffled, like when you water in your ears.  Or have ear plugs in so you hear your own voice REALLY loudly in your ears and have no idea if you're volume appropriate or shouting at people.

I am so thankful that this treatment seems to be working.  Last MRI showed some shrinking of the LMD and everything else is still stable.  No luck getting back on the GSK but so far so good with the other body systems.  So that issue is on the backburner for now.

Thanks again to all my wonderful MPIP buddies for yyour love, encouragement and prayers.  Sorry so bad about keeping my CarePage and facebook updated.  And don't even get me started on THIS debacle.  I'm trying to get used to it but hate all the changes and hope we can all keep each other up to date on the latest developments.

Love,

Amy

 

I continue to praise God in this storm, counting my blessings & enjoying my "bonus time!"

Login or register to post replies.

kwahlbin's picture
Replies 4
Last reply 8/3/2010 - 2:19am
Replies by: Anonymous, kwahlbin, ValinMtl

The bulletin board has been updated with new a new look and additional functions. To learn how to use the bulletin board and the new features, please see the Bulletin Board FAQs.

If you have additional questions, please contact us using the contact form.

Login or register to post replies.

Will be in the Colorado
Springs and Buena Vista areas for August and much of September.  Like to meet follow warriors in person.  Feel welcom to email me at tjellis@erols.com.

I'm me, not a statistic. Praying to not be one for years yet.

Login or register to post replies.

DebbieW's picture
Replies 3
Last reply 8/3/2010 - 2:15am
Replies by: Nebr78, Kimmer, kwahlbin

This is really going to take some getting used to.  Do you have to go back after each series of posts on one subject?  I keep having to go back to the beginning to see the next post.  Is there a next button that I am missing?  I don't find this as user friendly or after 9 years I just knew what to expect on the old board.

Have a great day and NEVER give up.  Cancer really hates that!

DebbieW

9 years NED! 

Never give up!

Login or register to post replies.

Gowri Sivaraman's picture
Replies 3
Last reply 8/3/2010 - 1:55am
Replies by: JerryfromFauq, Carver, akls

My father's pet scan results came out clean and the oncologist asked us to follow up with blood tests after 4 months. He has been on interfereon after his lymph node removal last year. This forum has helped in educating me what are the different options available. We think about everyday as a gift these days and i am happy for this moment even though i don't know what the future holds for my father.

 

 

Login or register to post replies.

Pages