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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LibbyinVA's picture
Replies 10
Last reply 11/11/2011 - 4:14pm

Sorry, folks, but need to re-post my request from yesterday.  I received the following response to my suggestion that MRF be considered: 

"Do you know of anything that is a little smaller? They like to pick organizations where a $3,000-5,000 donation would make a big impact."

So, back to square one:  does anyone know of a not-for-profit (501C3) organization within 100 miles of the Washington, DC area that I can submit to a northern Virginia corporation interested in choosing their annual fund-raising recipient?  As stated above, it has to be much smaller than MRF and an hours drive from DC as they make the contribution in person.

Hopefully someone out there has their own small fund-raising group that fits the bill.  I have one here in Richmond, but am located too far from DC.

LibbyinVA (Stage IIIb, gratefully NED since 2006)

I have melanoma but melanoma does not have me!

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TracyLee's picture
Replies 27
Last reply 11/12/2011 - 7:23am

Hi y'all,

I know many are struggling on the board right now, and I pray for each of you whether patient, family or friend. 

That being said, on to some good news. We all need to hear the good, along with the bad when we are terrified or feel hopeless. 

Got my scan results today. My lungs which previously had "innumerable" nodules (looked like someone blew baby powder on the image!) are all almost resolved! Fluid is gone from right lung, left lung is virtually clear except for a very small amount of fluid. 

My neck is down by over half, or more, on the different measurements. My surgical oncologists jaw dropped, all he could say was "WOW". EKG and labs, all normal. 

So, do not give up hope. Every  treatment is not going to work for everyone, but keep trying, trust in God and I lift you all also in prayer.

TracyLee Stage IV May 2011

Never will I leave you, never will I forsake you. Hebrews 13:5 Cast all your anxiety on Him, because He cares. 1 Peter 5:7 Stage IV 5/16/11 Ipi - 4 rounds May - July 2011 BRAF expanded access trial 8/8/11

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Lisa13's picture
Replies 2
Last reply 11/9/2011 - 12:03am
Replies by: momof2kids, dearfoam

Well, rather than waiting 3 weeks to see if the blood will absorb from my brain met, they're offering me gamma knife next Tuesday.  Even though there is blood in the left frontal lobe, they think it's mostly tumour, although I don't know how they could see it when we couldn't see anything looking at the MRI.  One of my brain mets is 6-7mm and the other one is bigger (but they don't know what size it is).  What should I expect with gamma knife?  Recovery,etc?  Are they quite successful in eliminating brain mets overtime?

I just hope and pray that nothing pops up anytime soon. 

Lisa

Many impossible things have been accomplished for those who refuse to quit

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cwu's picture
Replies 11
Last reply 11/14/2011 - 5:13pm

Dad is on IPI(Yervoy) for numerous cutaneous in transit lesions on his lower right leg.  He just finished his third infusion. I spoke with his onco again and he said we need to be prepared if Yervoy doesnt work and there are limited options.  I have been looking into anti-PD1 trials as back up plan. However, I have also been reading on treatments for in transit lesions and some treatments for in transit mets are isolated limb perfusion/infusion (ILP), topical immunotherapy (creams), and amputation.  Has anyone here done any of these treatments, how was recovery, what are your results, and recommendations? Did amputation or ILP keep the melanoma from recurring? I am very scared of ILP and amputation and whether dad can survive these procedures. 

Chau 

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Lisa13's picture
Replies 1
Last reply 11/8/2011 - 4:25pm
Replies by: jim Breitfeller

Hi Jimmy,

First of all, my first scan after Yervoy treatments showed 50% regression in my lung mets - including some that are gone. 2 grea just a tad, but we'll see how those look on November 30th when I get my next scan. It could very well be inflammation.

Bad news - I got 2 brain mets while on ipi or before (small). My last brain MRI was July 28th, so I have no idea how long these have been sitting there. A couple of Dr's in the U.S. have claimed that people who have success on ipi may get brain tumours which get removed and not come back for quite some time.  Do you know anything about this?  I have 1 brain met that has bled and is now absorbing - we can't even see the tumour at all on an MRI and my oncologist is starting to wonder if it may be ipi that  has done this. Does ipi cause bleeding in tumours? 

Anyway, I'm really hoping my lymphocytes are in my brain now trying to keep anything more from growing. It's hard to believe that I can have so much success and then get these buggers to ruin my excitement.

Lisa

Many impossible things have been accomplished for those who refuse to quit

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LibbyinVA's picture
Replies 7
Last reply 11/12/2011 - 10:12am
Replies by: Anonymous, LibbyinVA, Tim--MRF, justlittleoleme

Does anyone know of a non-profit melanoma group within an hour of Washington, DC that is actively seeking donations?  I have the name of a northern VA corporation that is looking for a group for their annual donation to a non-profit healthcare related foundation.  They personally persent the donation to the organization so it must be located within an hours drive from Washington, DC.  Any help would be appreciated as I live in Richmond, VA and am too far away to suggest the foundation of my choice.

Thanks!

LibbyinVA (Stage IIIB, gratefully NED since 2006)

I have melanoma but melanoma does not have me!

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fenny's picture
Replies 2
Last reply 11/9/2011 - 12:44am
Replies by: lhaley, DonW
My sister had a vaginoscope examination today in Beijng Tumor Hospital and the result showed that the splash in her vagina  increases. Her doctor in charge suggested a biopsy and living in great fear of further spread,  my sister wanted to have another surgery to have it removed. Do you guys think it is good and necessary for a stage IV patient with PM? Pleas offer your advice. Thx.   anda  uPpo  pplsaPPl     Pl   
Make Each Second Count!

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Karolina's picture
Replies 4
Last reply 11/9/2011 - 9:29am
Replies by: Karolina, Hereiam, Janner

Hi,

since I have found out that my friend has a nodular melanoma, i started to be more concerned about myself as well. I have quite a lot of moles on my body and I was wondering whether it would be good to remove any of them which are kind of the biggest or the most "different"? Would removing moles prevent potential develop of melanoma?

I saw a melanoma specialist last week and she didn’t suspect anything at the moment. She referred me to the photographer as she thinks that this is a good way of monitoring my moles: to have some pictures of my moles as a base for comparison of any changes. Sounds sensible… However, I was wondering if by removing two moles which I have on my back and which are prominent would be something right to do?

your views are very welcome

k.

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Gracie's picture
Replies 6
Last reply 11/8/2011 - 8:36pm

I am so sad I can barely write but I need help fast.  I grew 11 new tumors in eight weeks while on the IL2 including two new 3cm tumors in liver, many in pelvis, lung, back head, not brain...  They are now fast growng and I am deciding whether to try GSK2118436 trial study or Vemurafenib or do nothing. 

The Ipi and IL2 did not work for me.  I am signing a contract today for a new condo.  If I do any of these treatment options will I be able to be on my own.  I have many friends and family who will look in on me but how have the side effects been for any of you?

The trial study team was to call me for an answer yesterday and I still cannot decide what to do.

Has anyone been on GSK 2118436 trial?  How were your side effects, day to day living and did you respond?

Please write me back.

Gracie

cancer is in my life, but is NOT my life

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I am so sad I can barely write but I need help fast.  I grew 11 new tumors in eight weeks while on the IL2 including two new 3cm tumors in liver, many in pelvis, lung, back head, not brain...  They are now fast growng and I am deciding whether to try GSK2118436 trial study or Vemurafenib or do nothing. 

The Ipi and IL2 did not work for me.  I am signing a contract today for a new condo.  If I do any of these treatment options will I be able to be on my own.  I have many friends and family who will look in on me but how have the side effects been for any of you?

The trial study team was to call me for an answer yesterday and I still cannot decide what to do.

Has anyone been on GSK 2118436 trial?  How were your side effects, day to day living and did you respond?

Please write me back.

Gracie

cancer is in my life, but is NOT my life

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Karolina's picture
Replies 3
Last reply 11/9/2011 - 4:58am
Replies by: Karolina, Anonymous, Janner

I wonder if you can help me. It is almost a week since my friend had SNB. Her wound under arm is swollen. Is it a normal reaction? Is it related to the cancer or to the surgery?

thank you for your help

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Lisa13's picture
Replies 3
Last reply 11/9/2011 - 3:07pm
Replies by: Lisa13, momof2kids

First of all, I wish you the best of luck with your scans coming up.  There may be incredible news that your tumours are shrinking.

I wanted to ask you about your brain met. Did you have the one remain in your brain because it was bleeding and when it stopped, two areas were gamma knifed?  The reason I ask is because I decided against WBR right now. The radiologist suggested I wait 3 weeks, have another MRI to see if the blood is gone and then gamma kife both. He doesn't think they will grow much bigger in the next 3 weeks as they've been there for awhile and likely bled a week or 2 ago. They can't even see a tumour at all because of the blood, but they expect it's small like the other one.  What were your Dr's thinking if your bleeding didn't stop??

It sucks that ipi worked so well on me, but I grew 2 small brain tumours sometime between the end of July and now.  I'm still hoping that the army of lymphocytes can still crawl into my brain and stop anything further from growing for a long time.

I feel good things for you :)

Lisa

Stage 4 - 50% reduction in lung mets - most even disappeared - 2 may be inflammed

2 new brain mets since ipi, but nowhere else

Many impossible things have been accomplished for those who refuse to quit

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dearfoam's picture
Replies 5
Last reply 11/9/2011 - 12:24pm
Replies by: dearfoam, deardad

Took dad for his CT scan (chest/ abs/ pelvis) this monring and got the results before lunch. I did not ask for a paper copy today; just plain forgot.

Doc says unfortunately the chest tumors showed about 10% growth and the oters in the abdomen and pelvis showed even more. The spleen in particular is up to 3.3cm from 1.9cm in late August (last CT scan). The spleen met was discovered in late April so it has only grown - in fact the best we ever heard about any of the chest/abs/pelvis mets was "mild" and "stable" over the summer. The others include one on colon, one on left adrenal gland, others scattered about here and there.

So for the good news: Since dad has been on Temodar since early May of this year, the doctor said it is time to move on to Zelboraf as his BRAF results had FINALLY come back conclusive, and positive for the mutation. The test was for one of his moles removedin October. However we still do not know if there is going to be a response because it appears he has had more than one primary melanoma, and they might be different from one another. There are a lot of variables! Testing his brain, lung and spleen mets was deemed too risky, by the way, so we are banking on the BRAF gene form this mole matching the other mets.

Of course the next MRI isn't until December, so will have to wait on that, and by then hopefully we will see some shrinkage upstairs. 

And frankly, this was a long-wait-but-way-too-quick-consult today. I even brought a typed list of questions and a letter to the doctor's office before the CT scan (3 hours before we saw Dr.) so he could go over some more sensitive issues with dad, man to man, but it appeared that he had not read it or just plain ignored my request. I saw it in his hands, but it looked to tidy to have been read. I am telling myself there were more pertinent issues distracting him today.

I am still having trouble having to remind dad he is not mentally or physically in shape to do some things he woudl like to do, such as hop on a plane across the country or go back to working out of town living in a hotel without any help. I know it sounds bad to have to discourage him, but he is just too oblivious to his wellbeing/safety and symptoms and the level of care he needs and receives. I really needed the doctor to help, but maybe he will at the next follow up in three weeks? If not I might try to schedule with the Supportive Care clinic, but hearing things from the more authorative Oncologist is probably most likely to be effective or sink in.

We applied for assitance with the Zelboraf, and either way should be getting it by the end of the week. I hope he will be approved - all these drugs are so expensive. I am also curious how severe the side effects will be as he had very few side effects from Temodar - just some fatigue and diarrhea. He will be goign to stay with my sister for a week and a half starting next Tuesday, and I hope we have side effects figured out before that!

Thanks for your input,

DF

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