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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Lauri England's picture
Replies 4
Last reply 2/12/2012 - 7:55pm
Replies by: NYKaren, scots, DonW, akls

I had my first appointment with Spectrum Melanoma Clinic in Grand Rapids, Michigan.  They were awsome to say the least.  The did get all of my original medical records since the beginning of my melanoma.  I met Sergical Onc, Dermatoligist, and medical onc, and a genetics doctor.  It was very thorough.  I was very pleased with the whole experience.  I did get the results of the altrasound that I had which came back non maliginant non cancerous mass and the 2 moles I had removed were benign.  I was finally told for the first time that I am officially NED.  It was explained to me that the PET scan that I had done would not have picked up the nodual on my lung that they were watching because of the size of it and in there opinion I should have had another CT scan with contrast instead of PET scan which will only pick things up that are a certain size or bigger.  They do want another CT scan done in April to re check the lung nodual for change but other then that NED.  They said the nodual on my lung is so small that they are not concerned about it at all at this time but they do want to watch it, if it is still there even. Great new to me!!! On with life again with a lot less worry.

Don't sweat the small stuff. There are bigger fish to fry!

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CaringforMom's picture
Replies 4
Last reply 2/15/2012 - 6:14pm

Hello all!

My Mom ( age 71) is undergoing ipi treatment.

Her tumors are in her lungs and liver.  The liver is very enlarged and causing her pain and discomfort.

She was in a clinical trial for the next generation of ipi but had to stop due to severe rashes/itching. 

Just had her 3rd of 4 ipi treatments but is having severe fatigue and nausea issues.

She has lost a lot of weight.

After experiencing low blood pressure and a high heart rate along with "floaters" she had another MRI last Friday.

Now has brain mets - was clear on her scans in December so these are new.

Just had a consult and she will be having gamma knife radiation to treat the spots on her brain which are small.

My main concerns are her major fatigue and nausea.  She has had to have IV fluids for the past 2 weeks or I think we would have lost her.

She is fighting hard to survive to help with my Dad who is suffering with dementia.

Two parents with major health issues....I feel like I am drowning. 

She is having a high resolution MRI and CT Scan on Monday to prepare for the gamma knife radiation.  She mentioned that the nurses said the 4th ipi treatment might not happen on Tuesday due to the tests on Monday.

I am concerned that she needs all of the ipi possible to try to get the melanoma in her liver to respond.

????

Also, not really clear how much time we are looking at for survival.

Liver, lungs and now brain.

Very scared.

I can do all things through Christ who strenthens me.

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Hello all!

My Mom ( age 71) is undergoing ipi treatment.

Her tumors are in her lungs and liver.  The liver is very enlarged and causing her pain and discomfort.

She was in a clinical trial for the next generation of ipi but had to stop due to severe rashes/itching. 

Just had her 3rd of 4 ipi treatments but is having severe fatigue and nausea issues.

She has lost a lot of weight.

After experiencing low blood pressure and a high heart rate along with "floaters" she had another MRI last Friday.

Now has brain mets - was clear on her scans in December so these are new.

Just had a consult and she will be having gamma knife radiation to treat the spots on her brain which are small.

My main concerns are her major fatigue and nausea.  She has had to have IV fluids for the past 2 weeks or I think we would have lost her.

She is fighting hard to survive to help with my Dad who is suffering with dementia.

Two parents with major health issues....I feel like I am drowning. 

She is having a high resolution MRI and CT Scan on Monday to prepare for the gamma knife radiation.  She mentioned that the nurses said the 4th ipi treatment might not happen on Tuesday due to the tests on Monday.

I am concerned that she needs all of the ipi possible to try to get the melanoma in her liver to respond.

????

Also, not really clear how much time we are looking at for survival.

Liver, lungs and now brain.

Very scared.

I can do all things through Christ who strenthens me.

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Karin L's picture
Replies 5
Last reply 2/12/2012 - 8:38pm

Posting this for responses from other IL 2 warriors  as well as putting this post out there for any future searches someone might need. 

I am now 8mos. out from HD IL-2 treatment (4 hosp. stays, 2 courses) and as of last CT scan (12-9) , still responding.  Most disease has either disappeared or shrunk 80% or so.    So not really a complete responder as of yet, but hopeful I can get there!  Not complaining either.  Next scan in early April.

In the meantime, I developed neuropathy in both hands and feet.  In Nov. I also developed tinnitus (ear ringing constant).  Dr. tells me these are side affects from the systemic treatment and it means my immune system is still reved up.  Anyone else experience the same types of things? ( It's always comforting to know you are not the only one, ya know?)  Dr. also says it could be life long issues  (not complaining again), just wondering if others were told the same? 

Do auto immune responses normally show up so long after treatment?   Anyone know how long your immune system keeps fighting without a little extra help (other treatment)?  I still don't quite understand how this cancer responds or quits responding, etc....maybe none of us do (except maybe JimmyB, *smile*).  Dr. is SO confident yet I sitll walk on shards of glass. 

I read and pray and support silently each and every one of you here, everyday.  I am just not a poster : (.  Drives me nuts. 

Karin 

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himynameiskevin's picture
Replies 9
Last reply 2/12/2012 - 5:26pm
Replies by: benp, himynameiskevin, Lisa13, Fen, jag, Anonymous, Karin L, scots, aldakota22

Three days ago, on the 8th, I completed my planned stereotactic radiation on the bigger 2 of 5 tumors in my brain, which luckily were still pretty small (largest one at about 9mm). And yesterday, the remaining treatable 3 were targeted. The doctors said all went well, everything matched up perfectly, and they feel really good about the whole thing. I was supposed to have the remaining 3 taken care of Thursday, but an hour or so before my appointment I had another seizure. It came on slowly this time, slow enough for me find Brenda, let her know, prepare, lie down, and brace my self. In a way, the knowledgeable anticipation was pretty stressful though. Luckily it only lasted about 30 seconds this time, but I was in a slight lethargic state for a little bit after that. I woke in the ambulance and spent a couple hours at the ER to be safe. They checked my vitals/blood/electrolytes. Everything looked fine, no scans were needed because they knew what caused it and I was home in a few hours. Besides a little fatigue from the whole experience and a bit of stress from paranoia that this could happen again at anytime, I’ve been doing ok. My oncologists did up the dose of the anti-seizure medication and explained that should do the trick, some people just need a little more and reminded me that when they have confirmation that this radiation is successful as they think it will be, they’d like to have me taper off any/all medication as soon as possible. I'll be getting a follow up MRI in 2-4 weeks. And go from there.

Lastly, I have a chest/abdomen CTscan this Wednesday, to check and see if this Yervoy that I finished on Dec 20th is kicking in and making any progress on my lungs. That sure would be nice. But I've also heard that even this early, may be too early to tell. But we'll see. Other than that I'm doing ok. I have noticed what seems to be one swollen lymph node by my groin. I have been through the ringer lately and I had a pretty decent cough/cold for a few days but I feel I'm on the mend. I know on one hand a swollen node could be a bad sign of something, but then again, on the other hand, when I did IL-2, and also the adoptive cell therapy at the NIH, during the times that both those treatments were "sort-of" working, I had a few lymph nodes swell up for a little bit.. so maybe it's something trying to work? I don't know, but that's what I'm hoping for.

Thank you all for reading and being there with for support during these crazy times.
Talk to you soon.

-Kevin

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j.m.l.'s picture
Replies 2
Last reply 2/11/2012 - 9:48pm
Replies by: LynnLuc, Gsnowindlon

Just had several radical resecctions under my arm. Tumors had grown (1 fairly large) and were taken out.

Surgery was done on 1/30. How long does it take until I feel like me. Very tired and not up to par.

Also, RADIATION needed. What is that like. Any help on the side effects?? Any advice??

thank you JML

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yoopergirl's picture
Replies 2
Last reply 2/16/2012 - 9:37am

I am currently on Yervoy, having my 3rd infusion on the 20th. Last night while I was putting on my ointment for the itching I noticed on my arm was another lump a few inches from my other one, my blood work is scheduled for this Monday and then the nurse from the clinic will call me with the results I will have to tell her about this new lump, I really don't understand why they don't take them out now, things I have to ask the doctor but in the meantime get very anxious about these lumps. Has anyone had surgery while on Yervoy?  Thanks  yoopergirl

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Anonymous's picture
Anonymous
Replies 5
Last reply 2/21/2012 - 11:47am

Were you told benign mole or minimally atypical and turned out it was actually malignant?  VERY frustrated.

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This post has been in the works for five years. It is with my tenacity and help from researchers around the world I am able to present this paper. It is still in draft form but I thought was important enough to just get it out there. It may be to technical for the average person/patient but, it is well worth downloading and presenting to your oncologist and or medical team.

The gist of the paper is we have responders and non-responders to therapy. WHY?? with the help of Four on the most influential researchers in the Melanoma field, Dr. Craig Slingluff, Dr. Thomas Gajewski, Dr.Kingston Mills, Dr. Jim Allison and others, I was able to put some puzzle pieces together to tell a story. A story that may just save your life

In short, the non-responders may be/are missing the "Danger Signals" inflammatory Cytokines. Why, because their tumors are most likely harboring M2 phenotype macrophages (TAMs) Tumor assisted Macrophages.

But these TAMs have plasticity. This means they can change phenotype based on their miroenviroment. With some coaxing they can be change into M1 macrophages which in turn actiavate the T-cells. This means the patient needs to have therapies that promote M1 and Th1 cells. Well both Dr. Allison and Dr. Mills have discovered ways to do just that.

Please take some time to download and read this historic paper. It just may be the game changer for cancer.

 https://www.box.net/s/mzxb1b2o0tue44a3z3xo

 

I am going end with one slide.

 

 

“It is not the strongest of the species that survives, nor the most intelligent, but the one most responsive to change.”

~Charles Darwin~
Take Care,
Jimmy B

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deardad's picture
Replies 4
Last reply 2/13/2012 - 3:56pm

Hi just wondering for those on Zelboraf....once you have reached your 5th cycle do you then have a scan in 3 months? I find that weird considering the median response is 7months? My dad in Melbourne will now be scanned at the 8th month unless they feel something by physical exam.

Hate Melanoma.....

Keep fighting.

Nahmi from Melbourne

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HelperDaughter's picture
Replies 5
Last reply 2/21/2012 - 11:46pm

Just an update.  we took my mom to hospice today.  history: spot removed in 2003, diagnosed at stage iv in June 2011 by a bump under the biopsy site and a bump in her lymph node.  Turns out it was in both lungs, her small intestine, and her brain (in addition to her lymph node and leg).  All under 3 cm.  She had SRS for a < 1 cm lesion in her brain in the fall, then a craniotomy in December for a brain lesion that was bleeding.  She was bleeding internally from the small intestine tumor, needing 2 units blood weekly, and was risking an obstruction, so she went ahead with a bowel resection January 5. 

I never imagined my mother would never come home.  She suffered so many horrible complications following the bowel surgery.  my understanding is that she developed a bowel leak/fistula so they had to put a drain in and she wears a sac that drains out her bile.  They were unable to fix it despite two endoscopic procedures that are apparently cutting edge at SK (they go in endoscopically and put in these high tech clips that close the tissues and dissolve after the hole heals).  totally neat (if it worked).

she received the most excellent, caring, compassionate care at SK.  i cannot recommend it highly enough.

Anyway, we had scans this week that showed that the cancer recurred in the brain at the spot where it had been before, as well as multiple other spots in her brain, and also went to her stomach and adrenal glands, where it had not been previously.  SK docs told us they would do whatever we wanted to do, but we knew it was time.  my mother expressed two weeks ago that she did not want any more brain surgery, and WBT is crap, from what i understand.

 the new brain mets are what's going to kill her.  she's not all there anymore, and this has happened within the past week to week and a half.  the doctor told us that in essence, because the tumors were in the frontal lobes (bilateral) she was essentially experiencing a lobotomy (i was a little surprised he used that word but hey, i guess it gets the point across).  she can answer yes and no questions (are you in pain being the most important one) but is totally iffy on other stuff.  she recognizes us and can tell us she loves us, for which i continue to be grateful. 

i feel a little weird.  i seem to naturally fall into talking to her as though she's a three year old. she doesn't answer anything other than yes or no questions.  she *seems* to like it when i will say a funny rhyming phrase to her, and she will say it back.  for example, we were talking about it snowing today and i said, "oh no, look at the snow" kind of to myself, just to be silly.  I then turned to her and said it and her face all lights up and she repeats, "oh no, look at the snow." 

eh.  cancer sucks.

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Jeff&#039;s Mom's picture
Replies 20
Last reply 3/14/2012 - 12:04am

Jeff will start IL2 on Monday.   Thank you to all who responded to my previous post.  Each reply lifted my spirits and renewed my hope that Jeff will be a lucky responder!!  There is so much support and knowledge on this board - just amazing!

I am interested in the anti-PD1 drugs out there - what is the difference between the MDX 1106 and the MDX 1105?  Molecule size??  Anybody know?

I also watched Dr. Weber's webinar on TIL...anyone done TIL? Very interesting and also the combination of Yervoy and anti-Pd1 might be a viable option as a clinical trial.  This is a Phase 1 trial with escalating dosages.  Anyone know what the usual dosage of anti-PD1?

Any info would be greatly appreciated - thanks again,

Jeff's Mom

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Maxximom's picture
Replies 2
Last reply 2/10/2012 - 7:20pm
Replies by: SteveBMe, yoopergirl

Today I got in touch with the Medicare coodinator and found out that NO approval is needed if you have "original Medicare" and NOT Advantage plan and that I was told incorectly that I was not "approved" and should have had my first Ippi treatment yesterday. Somehow the Nurses and doctor had the wrong infomation and communications were messed up. I don't know who was at fault..but it is over and after I gave her a pretty strong lecture about better communications.. I was able to schedule my first treatment for Monday...hoppefully all will go without a hitch. I have both Medicare and a Medigap policy.. this mess should not have happened. Please be proactive people!

Joan

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Anonymous's picture
Replies 16
Last reply 2/12/2012 - 3:18pm

Hi ! Thank you all for being here and sharing information .I am glad I found this forum.

I was diagnosed with melanoma Breslow 2 mm and Clark's II , margins clear on my right breast last month. I am worried my doctor said  My wide excision and SNB will take plase in march only ( will be 3 months since mole removed!!!!!!) Is it normal or it will spread all around my body during this long time???

And another question - I know Clark is ot so popular ow ,but ayway it does mean something and how is it possible to have such a thick ( 2 mm) melanoma and only Clark's level II ?????

Do I have any chances to survive that??

I am only 31 ,newly married and wanted to have children .

Thank you for all your support and I wish you all the best

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natasha's picture
Replies 9
Last reply 2/12/2012 - 10:18am
Replies by: Lauri England, SteveBMe, natasha, Minnesota, Anonymous

I am so glad I found this website. I was diagnosed with melanoma last month .I am 31 ,I still don't have children and I wanted a child. No looks like everything is ruined.. Please , answer if you know - do I have chanse to survive with 2 mm thick melanoma and Clark II , margins clear on my breast? I cannot sleep and I lost my hope..  I am in UK and doctor said I will have my Wide Excision and SNB only next month (they are busy0,so it will take 3 months since mole removed !!!!!!!

I do know Clark's not so popular now ,but anyyway it does mean something and I cannot understand how is it possible to have such thick tumor (2 mm) and only  Clark level II?

Please ,colud you reply on my post with some information ,.

Thank you for beeing here and sharing your stories.

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