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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mommydog's picture
Replies 13
Last reply 3/16/2012 - 6:10pm

My husband has been on this trial at UCSF for 26 weeks now.  His tumors have been reduced by over 74% and have gone from a total of over 15 cm to slightly over 3 cm.  He has had 3 PET scans, and there has been improvement each time, although it has been less dramatic each time.

Although I am thrilled, I am concerned about all of the comments that this treatment causes only temporary results.  What is the plan b?  When do we know that it is time to pursue another course of action?  Is the BRAF/MEK treatment always just temporary?  Since 77% of the patients from the Roche trials are still living, how do we know this to be true?

Thanks for any insight or advice.

Deborah

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mommydog's picture
Replies 1
Last reply 9/8/2011 - 12:21am
Replies by: Charlie S

My husband has been on this trial at UCSF for 26 weeks now.  His tumors have been reduced by over 74% and have gone from a total of over 15 cm to slightly over 3 cm.  He has had 3 PET scans, and there has been improvement each time, although it has been less dramatic each time.

Although I am thrilled, I am concerned about all of the comments that this treatment causes only temporary results.  What is the plan b?  When do we know that it is time to pursue another course of action?  Is the BRAF/MEK treatment always just temporary?  Since 77% of the patients from the Roche trials are still living, how do we know this to be true?

Thanks for any insite or advice.

Deborah

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Jewel's picture
Replies 3
Last reply 9/9/2011 - 12:17am
Replies by: FormerCaregiver, Jewel

Hi,

9/2/11 my husband went back in for a re-excision of his original tumor ( 3 spots showed recurrance) all in same area. They did a full ELND due to the fact that lymph node was (is) swollen. If you go back and look at my last 2 posts you will see my husbands full history which started in Nov, 2010. We have not gotten the results back yet from ELND. I apologise for not having yet filled out his profile.

Now that the melanoma has traveled from his lower left calf to his left groin does that still make him a stage 3? Pet Scan and 2 MRI's one of head and left leg only showed cancer in calf and possible in groin.

It is amazing how well he is doing concidering the drains and the 3 X 8 inch graft they took off his thigh and put on his calf.

We are still waiting for the results.  If the groin proves positive in your opinion ( and I'm open to all) what would you do?

A very concerned wife who does ALL the research. My husband refuses to live in fear.

Thank you,

Jewel

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Replies by: King, nickmac56, TracyLee

I wrote here last week and just thought I'd give everyone a quick update. My extreme headaches from last week have subsided, not entirely, but I feel much better. The weekend was not a fun one, lots of nerves and anxiety waiting on results.

But, good news...

MRI came back clean! Huge relief. Then I had my blood work done and it came back with very low sodium levels (126 vs. 135 normal). Instead of getting my 4th and hopefully final dose of Ipi, they sent me to urgent care. WTF? Ended up spending about 4 hours there, they treated it with 2 saline bags and brought it back up to close to normal, and let me go by 11 last night. Hoping to get back up there today for my final treatment. 

Quick questions for the board:

1. Has anyone experienced low sodium levels before? The nurse said it was not a common effect of Ipi, and the docs at urgent care were clueless as to what it could have been caused by. They did say that if it gets very low, it can be very dangerous. 

2. What are the common treatment options if thyroid levels are low. Is this permanent impairment? 

3. Still have not received much info into what may have been causing my headaches. A swollen Pituitary seems like the answer I get most, but again, my blood work for the pituitary (namely cortisol levels) were normal. 

Docs did say I may get an MRI scheduled for my pituatary area, which was not caught on my previous MRI last week, but said they were not as concerned in that area as there was nothing in my blood work to suggest anything is wrong with it. 

Anyway, hoping to be done with Ipi for good today and then can enjoy a 12 day break back in Colorado. 

Wetterhorn 

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TomGlo's picture
Replies 6
Last reply 9/17/2011 - 7:49am
Replies by: TomGlo, Sherron, alicia, lhaley

Hello everybody,

I had nodular melanoma on my left side of the head in 2008. The treatment I received was wide excision and a sentinel lymph node biopsy, which came back negative. Two years later, in December 2010, I discovered an enlarged lymph node on the left side of my neck. After a biopsy, it turned out to be melanoma. My oncologist decided to make a complete neck dissection. Some other nodes contained little traces of melanoma, which means that I was diagnosed stage IIIC. After the surgery, in February 2011, I had radiotherapy all over my left neck area. I recovered really well from surgery and radiotherapy, and my last PET scan end of June 2011 was all clear. Bloodwork was excellent too.

 
A week ago, I discovered an enlarged lymph node in my groin, on the left side. It is not terribly large, but I can palpate it. I'm worried now, since I already went through all of this a year ago... . Does anyone know how likely it is that melanoma travels from my neck to the groin lymph nodes? I will see my oncologist next week to check it out.
 
Thank you for your advice.
 
Tom

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cincin1179's picture
Replies 24
Last reply 9/9/2011 - 3:47pm

Hi everyone - I was just diagnosed with Melanoma in August. It all happened pretty fast. I finally drug my butt to the dermatologist.. even though I had the mole and it didn't look right for a while. My initial appointment was August 17th, I got a call on August 23rd saying it was a 1mm melanoma.. and on August 31st (last wed), I had a big chunk of back removed and a lymph node taken out to be... tested. I seriously have been a mess. I have cried everyday and have been scaring myself looking at stuff on the net. I have my post-op appointment on Thursday and am hoping for the best but scared of the worst (especially since the surgeon freaked me out and said it was a little swollen). I will tell you one thing, it really opened my eyes to being smart in the sun. I guess I just need to talk to other people going through it at this point because as supportive as my hubby, family and friends have been... I still feel kinda alone with this one. So that's all.. nice to reach out to you all.

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Napa K's picture
Replies 3
Last reply 9/7/2011 - 5:38pm
Replies by: NYKaren, TracyLee, swissie

Has anyone experience stomach pain with Ipi with out diarrhea/intestinal issues? Not lower GI but more stomach/just below rib cage tenderness, pain and nausea. 

2 weeks out from 4th dose and had little to no side effects but have started feeling not so hot over the last week.  Especially bad after eating.  Wanting to know if anyone has had similar experience.

Hope is the most powerful drug

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jmmm's picture
Replies 6
Last reply 9/7/2011 - 8:06am

I have a question about trials--what are the big hospitals treating metastatc melanoma and what are the "big" trials that are going on right now.  My husband has disease progression after yervoy working for a couple of weeks.  His oncologist is sending him to Dr. Linnette at Siteman Cancer Center (st. louis--about 45 minutes from where we live).  He's the closest specialist running trials right now.  We're open to looking farther away, but are only willing to travel if there is really something promising going on--we have 3 young boys and since it seems at this point, my husband has a limited time left to spend with them, he doesn't want to spend it running all over the country--he wants to spend as much time as he can with our boys.  We know there's Zelboraf--we're hoping to wait on that for awhile, since it only lasts for a limited amount of time and neither tumor he has now is in a place it will be fatal. 

We've looked a bit into IL-2 and it sounds kind of promising.  Will any oncologist do IL-2, or do you have to go to a specific center to get it??  Since we're in the process of switching doctors, we're not sure where to turn at this point.

Please help us out--my husband is only 38 and in good health (minus cancer:)).

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awg's picture
Replies 5
Last reply 9/9/2011 - 4:17pm

Hello,

 

I recently transitioned from high dose infusions to 3 weekly injections. I am tolerating things well but seem to be experiencing a dizzy feeling almost daily. I have read that dizziness can be a side effect of Interferon. Has anyone else experienced this, if so how did you treat it?

I currently do not have sinusitis so i can rule out all sinus issues at this time.

 

Thank you,

 

Allen

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dian in spokane's picture
Replies 2
Last reply 9/7/2011 - 2:46pm

This morning my local paper highlighted this organization and it's founder. I found it pretty interesting and went out on the web to find this website to share with you all. I know how difficult it can be to find yourself suddenly tossed into the machinery of the American Medical system. I hope this is useful to some of you.

 

dian

 

http://www.patientnavigator.com/content/

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beatricefromPARIS's picture
Replies 2
Last reply 9/9/2011 - 5:37pm
Replies by: PlantLady, lhaley

Update to contribute to the IPI Yervoy message of hope for patients:

 After first course of ipi (March to May 2011), substantial partial response with disappearances of some tumors. A few active spots still showing on the pet scan. Overall status is now basically stable. Brain still clear.

Re-induction phase should start next week.

No major side effects in the first round. A bit of fatigue and "mumbling" tummy plus (temporarily) a bit high eosinophils but overall...an "enjoyable" treatment compared to the previous ones! I'm told this is predictive of how I should bear the re-induction. We'll see...

Beatrice (stage IV)

 

 

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j.m.l.'s picture
Replies 3
Last reply 9/6/2011 - 9:41am
Replies by: Lisa13, Gene_S

Melon. keeps multipyiing. going on Yervoy next week. CAN ANYONE SHARE THEIR EXPER. WITH THIS DRUG, SIDE EFFECTS, DID IT HELP THE CANCER, IF NOT WHAT WAS NEXT STEP. THANK YOU

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Lori C's picture
Replies 9
Last reply 9/10/2011 - 10:46pm

I hope this is okay.  Many of you "know' Shelly in Switzerland, the expat from Vermont who, with her family, had moved to Switzerland and had been fighting stage four melanoma.  Shelly's positive spirit always inspired me.  She passed away last week.  Here is her Caring Bridge site http://www.caringbridge.org/visit/shellypilcher1

Shelly had experienced good results with treatment, and had enjoyed what her husband called "the gift of extended life" as a result of it.  She was an amazing warrior.

 

Lori Challinor

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Anonymous's picture
Anonymous
Replies 1
Last reply 9/6/2011 - 8:56am
Replies by: nickmac56

I have just been diagnosed as a stage IV melanoma patient, and have been told these are the best therapies out there. 

Has anybody been through these and if so, how are you doing? what are the side effects, and what is the difference between the 2?

Insert Generic Inspirational Motto Here

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An interesting and indepth article of what is being worked on in the melanoma research world.

 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3078100/?tool=pmcentrez

Future perspectives in melanoma research. Meeting report from the "Melanoma Research: a bridge Naples-USA. Naples, December 6th-7 th2010"

 

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

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