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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Lisa13's picture
Replies 9
Last reply 7/25/2011 - 7:14am

I'm 2 days away from knowing how the dacarbazine is managing the small nodules in my lungs.  I was doing quite well until this morning, and then was plagued with major anxiety. Chest tightness, hard to breathe - you know, symptoms that might make you think bad things, but yesterday I had none of these symptoms. I'm very irritable and it's hard for me to focus and my heart is racing. This is my first post scan after first line treatment, so I've never felt this type of fear before. I keep trying to tell myself that the melanoma has been growing slowly from April to June, so it's either continuing to grow slow, is stable or is starting to disappear.   Can you guess which one I pray for????  I wasn't going to come on here until I knew my results, but my anxiety is getting the best of me.

I've also been thinking alot about these spots - most under 6mm, all of which havn't been biopsied to confirm melanoma. Even though most "tiny nodules" appear a bit bigger since the last scan in April, for all I know, a few of these may not have been melanoma (or at least this is what I tell myself).  As much as I want to know on Tuesday, I'm scared to know and I doubt this journey gets any easier.

Lisa

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

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Replies by: NYKaren, Vermont_Donna

Hi everyone:

As most of you have read, I'm due for my last dose of Ipi on Thursday.  My stomach side effects are being managed well, but this rash/itch is pretty bad.  I know other side effects from other treatments make a rash seem like child's play, but it's bad, and last time I met with Dr. Halpern (dermatologist who co-heads Melanoma program at Sloan) he prescribed Doxepin, 25mg.  Aparently it's an old antidepressant, wich he said they use a lot on severe rashes with good results.  I already take 1 Zyrtec daily plus a short-acting antihist. every 4-6 hours.  Plus steroid creme, menthol creme, powder after sweating, etc.  

The instructions are "1 at bedtime, after tolerated and still pruritic after 5 days, add morining dose, then after 5 more days, may introduce 3rd daily dose."

I just started adding the morning dose.

So, I was just wondering if anyone here has had any experience with the drug.  It certainly makes me sleepy, so I'm curious if I can stay awake today after just starting the morning dose!

The only visible change in the mel is that there is some white running through it, but nothing has flaked off as Dr. Wolchuk hopes--he did say that the Ipi could work, but I would still have the pigment, but he does hope, as do i, that it will flake off.  I also notice that some small spots have increased slightly running from the mel (on my temple) towards my eye.  It figures that I won't see Dr. W. for my last infusion (I guess he'll be away) as I always have, but I will try taking a picture of it Monday and emailing it to him.  I'm so anxious about whether this will work or not, possibly "advancing" to stage IV, etc.  I guess we all experience that with any treatment, but it's still so scary.

Hope everybody's keeping cool,

Karen

Don't Stop Believing

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StevenK's picture
Replies 22
Last reply 7/27/2011 - 12:25am

I've been driving myself crazy by reading a lot of studies. I always end up scared and in a bad mood. My family says I am no longer fun to be around. I've learned a lot that I didn't know before, though, so maybe I have to go through this process. So many statistics, though, and so much conflicting information. It's maddening! 

Are we all prisoners of these stats or are there things that you can do to make it less likely that you will get a recurrance? If you whipped your body into the best shape of your life and ate super healthy, will that really make a difference or will some study conclude "no significant survival benefit"?  

The stats are in my favor at present, it seems, but certainly no guarantee. I hate the idea of passively hoping for no recurrance. I feel a need to take some kind of action to seize control of my fate, but is there really anything that a person can do that can make a significant difference?  

Steve

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mombase's picture
Replies 3
Last reply 7/25/2011 - 11:16am
Replies by: NancyGM, nickmac56, ed_CT

(This is a re-post with a more descriptive title)

Hi folks, I am a 57-year-old "youngster" who was diagnosed a few weeks ago with Stage IV melanoma.  I had a lesion removed from my back a few years ago along with the sentinel glands from both armpits, which came back negative.  I was so happy that I had dodged the proverbial bullet. A year later I was diagnosed with a meningioma which was removed successfully. On my yearly CT scan (June 8th of this year), my primary doc said that I had another brain tumor that was in a totally different location from the first. Since I had previously had a melanoma, she was very concerned. She ordered a full body CT and sent me to the neurosurgeon to set up a surgery. (This is all slightly complicated by the fact that my treatment is through the Sacramento VA. My surgery had to be done at the David Grant Hospital at Travis AFB). Just as I was about to go under, the surgeon received the results from the full body scan which showed several tumors in my lungs. They were thinking about stopping the surgery and doing gamma knife on my brain and doing biopsy on my lungs, but they decided to go ahead and remove the brain tumor anyway. It was definitely melanoma. The oncologist has said that the lung tumors are not resectable because of the number and locations.

Basically, the oncologist did not give me a lot of hope due to the brain tumor prognosis. I came in to meet with her for the first time with lots of questions but got very few answers. I guess the most discouraging part of the research is not knowing why some people respond and others don't. Nonetheless, I am ready to fight the good fight as I am a single mom to a wonderful 17-year-old daughter, and I have lots of things to do!!

The first thing that is going to happen in a couple of weeks is  whole brain radiation at Daivd Grant Hospital. Then I need to let my oncologist know a couple of weeks after that what treatment option I have decided on. IL-2 seems to have better odds than some of the others. Unfortunately, I would have to go to the Palo Alto VA Hospital where there is a staff dedicated to dealing with the side effects. I would have no family there and my understanding is that the side effects are treacherous (any personal experiences would be GREATLY appreciated).

Yervoy (ipi) also seems like a viable option, and I can be treated in Sacramento. Does anyone have any personal experiences, good or bad, with this drug?

I feel like everything is closing in on me, even though I am pretty sure in reality if one treatment does not work, another can be tried.

Any input would be so greatly appreciated!!

Getter done!

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MikeWI's picture
Replies 8
Last reply 7/24/2011 - 12:04am

I am new to this site, having been diagnosed with melanoma on 5/25.  On my lower right leg, I always had a mole.  Being of irish descent and fair skined that was common.  Around November of last year this mole flaked off like dead skin.  Shortly afterwards it was replaced by a scab and that scab started to grow in size. 

I went to my doctor in May of this year and had the mole removed.  They examed it, and found it to contain melanoma. 

Shortly after that is a daze of tests I had a CT/PET scan, sentinel lobe surgery and a surgery on my leg for a deeper incision.

The PET scan showed the cancer had not yet Metastized, my lymph node was clean of cancer, and so was the tissue sample from the deeper incision.  Due to the size of the tumor(7mm thick) I am considered stage 2.

My next step may be a interferon treatment.  I have faith in my Doctors at the University of Wisconsin Hospital

I have read everything on this web site including the following quote "You have been given a Diagnosis not a Death sentenace"  Does anyone know any other strategies for dealing with this disease?

 

Thanks,

Mike 

Search and Destroy

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brownidgirl1's picture
Replies 4
Last reply 7/24/2011 - 1:32pm

Hello, I just signed up on this site today because I am having a slight complication from surgery to remove 2 lymph nodes from my left groin. I have read the stories shared on this site and my prayers go out to each and every one of you!! I have questions but am having difficulty getting answers or results from my doctor and wanted to see if anyone here had any simiar experiences or advice.

After the removal of the lymph nodes I did not have any drains put in. I have had to go to the surgeon twice now to have him drain the site with a syringe. The site keeps swelling and filling with fluid and there is nowhere for the fluid to go. On my last visit I believe he used a lightly larger needle to drain the fluid so it is draining itself a little at a time but it is still swollen. My fear is that I will end up with an infection or that I will end up in the doctor's office every few days to continue to have this drained.

Does anyone have any advice or suggestions? I would appreciate it greatly!! Again, my prayers go out to everyone who is facing this battle!

Thank you,

Kelly

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mombase's picture
Replies 15
Last reply 7/25/2011 - 7:01pm
Replies by: NYKaren, mombase, Jim M., lhaley, MaryD, Anonymous, Cooper, MichaelFL, jmmm

Hi folks, I am a 57-year-old "youngster" who was diagnosed a few weeks ago with Stage IV melanoma.  I had a lesion removed from my back a few years ago along with the sentinel glands from both armpits, which came back negative.  I was so happy that I had dodged the proverbial bullet. A year later I was diagnosed with a meningioma which was removed successfully. On my yearly CT scan (June 8th of this year), my primary doc said that I had another brain tumor that was in a totally different location from the first. Since I had previously had a melanoma, she was very concerned. She ordered a full body CT and sent me to the neurosurgeon to set up a surgery. (This is all slightly complicated by the fact that my treatment is through the Sacramento VA. My surgery had to be done at the David Grant Hospital at Travis AFB). Just as I was about to go under, the surgeon received the results from the full body scan which showed several tumors in my lungs. They were thinking about stopping the surgery and doing gamma knife on my brain and doing biopsy on my lungs, but they decided to go ahead and remove the brain tumor anyway. It was definitely melanoma. The oncologist has said that the lung tumors are not resectable because of the number and locations.

Basically, the oncologist did not give me a lot of hope due to the brain tumor prognosis. I came in to meet with her for the first time with lots of questions but got very few answers. I guess the most discouraging part of the research is not knowing why some people respond and others don't. Nonetheless, I am ready to fight the good fight as I am a single mom to a wonderful 17-year-old daughter, and I have lots of things to do!!

The first thing that is going to happen in a couple of weeks is  whole brain radiation at Daivd Grant Hospital. Then I need to let my oncologist know a couple of weeks after that what treatment option I have decided on. IL-2 seems to have better odds than some of the others. Unfortunately, I would have to go to the Palo Alto VA Hospital where there is a staff dedicated to dealing with the side effects. I would have no family there and my understanding is that the side effects are treacherous (any personal experiences would be GREATLY appreciated).

Yervoy (ipi) also seems like a viable option, and I can be treated in Sacramento. Does anyone have any personal experiences, good or bad, with this drug?

I feel like everything is closing in on me, even though I am pretty sure in reality if one treatment does not work, another can be tried.

Any input would be so greatly appreciated!!

Sincerely

Cristy

Getter done!

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Kim K's picture
Replies 16
Last reply 7/28/2011 - 11:38pm

Had scans yesterday, all is clear.  Next check in 6 mos.  I don't know why my onc also wants me to see the surgical onc next time, nothing to cut on - lol.  Whatevers.... perhaps it is just to cheer the surgical onc since some of us will be the one's extending the survival tail of stage IV, and I happen to be one of them *fingers crossed along with everything else*

VATS - 2/10

High dose IL-2 - 23 bags 5-6/10

NED oficially 7/10

Cancer Sucks Shit Happens Nothing is ever 100% bad, there is a reason and silver lining in everything. Sometimes I need a good light and my glasses to find it though. You can't fix stupid.

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eaca's picture
Replies 41
Last reply 8/7/2013 - 4:39am

I just had a consultation with my medical oncologist today during which we discussed the Interferon decision.  The options for me are:  Wait and Watch; classic Interferon treatment; Pegylated Interferon; try to get on a trial at MD Anderson combining Peg-Interferon and peptide vaccine (gp100).  I've read up here on what others have had to say on Interferon or not, but there doesn't seem to be too much experience with the pegylated version or the vaccine.  I'm 'only' stage II, but relatively high risk because of the mitotic rate of my primary.  In the end I know this will come down to a very personal choice, but I thought I'd put it out there for any thoughts others might have.

After my relief over being clear after surgery, I'm now feeling confused and worried again.  Big choices to be made.  Thanks in advance for any input!

Elisa

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TracyLee's picture
Replies 22
Last reply 8/13/2012 - 3:28am

Hi Y'all, 

Saw Dr. Sharfman today. He does not feel I'm responding to Ipi, but will finish the 4th dose this Thursday.

I AM Braf +, since I have fluid in the lungs, that's the next step for me. 

It is so nice to not feel like death is NOT imminent and that their is hope. Dr. Sharfman is just the best, very straightforward but never gloom and doom.  Always kind and hopeful. 

Even had some necessary discussions with my husband during the drive, but not at all sad or creepy. Made me relax knowing that he is at least thinking about things that keep me awake. We had a nice day together, got some good news, and have a plan to move forward.

Praying that all on the board have a "good news" weekend, we will beat the beast. 

Special thanks to the posse for holding me up when I was so down earlier this week!

Hugs from Delaware!

TracyLee

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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BellaSusan's picture
Replies 10
Last reply 3/15/2012 - 5:43pm
Replies by: Anonymous, hope4cure1, BellaSusan

Comments regarding Dr. O'Day and the efficacy of The Angeles Clinic have caused me to reflect on what I know to be true.  I am a six year Melanoma Vet, four of which have been spent dealing with metastatic disease in the liver, spleen, lungs and brain.  Through it all, I've learned one thing.  While it is nice to work with a doc with great communication skills and bedside manner; it is far more important to work with docs who have very large toolboxes with as many treatment options as possible.  Since my life has depended on clinical trials, I must add one more necessary point.  Make sure the Melanoma specialist’s clinic has stringent Standard Operating Procedures to ensure that the pharmaceutical manufacturer's protocol is being followed. You don’t want to risk the FDA closing the clinic’s trial participation due to breach of protocol.
 
My experience with The Angeles Clinic might help you decide whether to seek treatment there. Three important observations I’ve made are:
 
1.  The Angeles Clinic has one of the largest Melanoma Treatment Toolboxes in the US.  Post Ipi and after my third hit with brain mets, I had to get on the first round of the expanded access trial, for the BRAF inhibitor, PLX 4032/RG7204/Vemu, pronto.  Dr. O'Day's younger associate, Dr. Omid Hamid, was conducting the Vemu trial. After working with Dr. Hamid over seven Vemu cycles, I can unequivocally state that Dr. O'Day has measures in place to ensure high professional standards are maintained at the clinic.  
 
PLEASE do not interpret from my comments that Dr. O'Day is stepping down.  As far as I know, he is only on an extended leave.  He has however had the foresight to invest in the professional resources necessary for temporary coverage as well as future growth.
 
2.  Dr. Hamid has a decade of Melanoma treatment experience that happens to be very patient care oriented. While he has his own unique set of skills and does not parrot Dr. O'Day, he also maintains and furthers the high standards Dr. O'Day set for the clinic.  This is the kind of doc who responds to your text so quickly that you wonder when exactly he sleeps.  Currently, Dr. Hamid has seven viable options from the latest R&D, should I relapse.
 
3.  Dr. Hamid has been dogged in his pursuit of clinical trials for The Angeles Clinic.  His youth and stamina are key because after clinic hours he researches the R&D landscape looking for the best options possible that match his patient profiles.  When he sits down with pharmaceutical trial directors, they know Dr. Hamid will deliver results that are mutually beneficial to the clinic's patient base as well as pharma.
 
So am I dedicated to being Dr. Hamid's patient for life?  Given what I have stated prior, the only feasible answer is "No".  I am, however, Dr. Hamid’s dedicated patient for as long as he responsibly provides me with the best options possible.  I hope my comments will help you in your due diligence.

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jim Breitfeller's picture
Replies 9
Last reply 10/2/2011 - 5:54pm
Replies by: LuckyMan51, Anonymous, jim Breitfeller, MariaH, LynnLuc, sharmon

I just got word that Combinatorial ...Yervoy + BRAF Therapy.. is coming

"t's being assembled. First patients treated sometime in the fall."

This is from a reliable source.

Jimmy B

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renakimu's picture
Replies 5
Last reply 7/22/2011 - 5:25pm

today we found out tha the nodules were there from the first ct scan and they are exactly the same as before.none can say that they are melanoma or not.is it posible with just a microscopic met at tha sln and without othel lumpnode positivi at the full axillary disection to have a met at lungs?the lung specialist told us that those could be there for years and to be asymptomatic for ever, they just need observation from time to time.the thing  that worrys me is that they are ground glass.....so much anxiety evere time with scans....its horrrible..

cant wat for answers!you are helping me so much!

blessings to everyone

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triciad's picture
Replies 15
Last reply 7/23/2011 - 8:37pm

Hi Everyone,

It's me again.  I just had surgery to remove an intransit from by buttock area.  This puts me now at 3C.  My oncologist wants me to do a little radiation to that area.  He says it's painless and hopefully will kill any cells left behind...on my behind...ha ha.  He also said it would not exclude me from any treatments in the future. 

I have an appointment next Wednesday with the radiologist, but I was hoping some of you could share some advice or experiences with localized radiation.  How many zap sessions are usually involved?

Thanks for all of your help!

Tricia

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cfw9186's picture
Replies 7
Last reply 7/30/2011 - 3:10pm

 

south

Posted a few seconds ago
Things have gotten pretty rough here lately:  had bad sinus infection since the 6th of July, FINAALLLLLLY got some antibiotics about the 13, took for 5 days still felt like crap, so week, could not eve  get out of bed since the 6th because of head aches, the after the antibiotics, still was so week , then saw spin wheels again called dr.b., had an MRI and found our more tumors, plus my blood showed low on hormones, thyroid, so he put me steroids for the swelling in my brain and thyroid  for my metabolism.     

.dr b doesn't  seemed very encouraged that my IPI is working although I am holding out for weeks 12-14.  I find it weird that this has all started after the 4 and final infusion.

He suggests a chemo in pill for my brain may be the next best step..........Have appointments with both Drs. tomorrow,,,,,,,,,,still trying to remain hopefully.

Hanging on the the edge of a mustard seed.  :)  Love to all  Kitty

Get a skin check at least once a year by a dermatologist and stay out of the sun.

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