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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Sherron's picture
Replies 11
Last reply 9/13/2010 - 8:50am

Hi everyone,

My husband (Jim) is the one who has had no surgery other than to remove the original Melanoma and then to remove a local recurrence last year.  He has progressed to Stage III as his cervical lymph node is quite large about 1 1/2 inches, round like a ball sticking out on his neck.  He is only doing alternative and herbal.  He did not do the WLE or the SNB...As of yesterday, he has a pain on the same side as the Melanoma on his right side, going into the stomach area.  He thought he might have pulled a muscle as he has been doing work around the house...then decided it was just probably gas or something like that.  He did nothing yesterday, but sit it the chair.  I came home from work, he was still in pain when he moved, even his leg .., I put one of those icey hots things on it and barely put pressure and he acted like it really hurt.  I am wondering could this be something else, or am I just being alarmed because he is not doing any other treatment...?  My mind is racing.  Any input would help me, please.  I know most of you are doing regular treatment, but my husband's decision was to only do natural...He is still a fighter and a warrior, just fighting a different way.     Any input would be greatly appreciated.  Thank you so much.

Take Care,

Sherron, wife to Jim

 

 

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bill58's picture
Replies 17
Last reply 9/12/2010 - 9:19pm

I just got back from my Pet scan.  Not so good news.  cryingI went from stage IIIC to stage IV.  The scans showed the mel has spread to my spine.  That does not sound like a good thing.  I have previously tested positive for the B-RAF mutation so my Oncologist is signing me up for the BRAF trial.  smileyHopefully that will start in a few weeks and will help shrink this beast.  Gee, I was just starting to feel better after completing my radiation treatment on 8/31.wink

Any thoughts and prayers would be welcome at this time.   Add another stage IV warrior to the list.  Hoped I would not join that list, but oh well, what can you do.  Mel is going to do what it wants, but I am working to kick his butt as best i can.  Time for a little more crying before I get on with my life.

Bill from Illinois Stage IV Spine Mets, brain mets ans subq mets. starting whole brain radiation on 11/8 and then compassionate use IPI ASAP.

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For those who don't know our story, Eric is Stage 4 with innumerable tumors in his right leg as well as tumors in his lymph nodes.  He has sub-cutaneous tumors and vascular skin tumors.  He has done High Dose Interferon, Carboplatin, Abraxane, and Avastin, High Dose IL-2, and a dendric cell vaccine.  His cancer progressed all through each of those treatments.  Now he is in between treatment and waiting to begin a Intralymphatic Vaccine treatment on September 20th. 

Eric is so discouraged.  We can see changes in his leg daily.  His vacular tumors are growing so fast and the sub-q tumors and putting pressure on his nerves and in the muscle.  He is been in treatment since February, 2009 and is growing very discouraged.  He wants to call it quits and it scares the hell out of me.  He is in so much pain every day.

Is it selfish of me to talk him out of stopping the treatments?  I just don't know what to do.  I don't want him to give up because I think there may be something out there that will help him and I think it's hopeful that it hasn't spread outside his leg or lymph nodes.

I need advice.  Thank you.  Jill

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Anonymous's picture
Anonymous
Replies 0

Has anyone heard how Rocco is doing??/ His scans were last week. Hoping for the best for him.

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Shelby - MRF's picture
Replies 2
Last reply 9/12/2010 - 9:27am
Replies by: bri11iance, MaryD

Hello!  I just wanted to let everyone know that we have added some great information to our website today.  It is a summary of the June 2010 ASCO (American Society for Clinical Oncology) meeting.  This is a VERY TECHNICAL summary of the various clinical trials, medications, and information presented at the conference.  It is only meant for you to be informed of the latest and greatest in the melanoma field.  Here is the link, or you can find it under Patient Info and Resources, Clinical Trials.

http://www.melanoma.org/learn-more/melanoma-101/american-society-clinical-oncology-asco-june-2010-update 

We hope you enjoy this new material and most of all, we hope you learn something from it!  Also, keep an eye out on the bulletin board about us updating other areas in our About Melanoma and Patient Info & Resources sections.  We may ask for feedback and ideas from you, our wonderful online community!  Have a great day!

Shelby - MRF

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himynameiskevin's picture
Replies 3
Last reply 9/11/2010 - 9:23pm
Replies by: SuzannefromCA, Fen, KatyWI

Hi everyone. I think I'm fully recovered from round one of IL-2, been home for 6 days and I'm feeling good.  Feeling really good actually, I hope that's not a bad thing. I start my second round on Monday and am wondering, if I am fortunate enough to be one of the positive responders to the treatment, what would I expect to see? I was told that I'd probably be waiting for about 3 weeks to know if it's working.  I can't find much information about IL-2 working on people, at least in detail. Do tumors just shrivel and die? I have a good sized cluster on my back and one on my chest about  the size of a lima bean that I can actually see under my skin. The internal ones, I just have to hope for shrinkage. But would I actually be able to see these things physically get smaller? Also, I've heard from some people that tumors could actually swell or enlarge while being defeated. Has anyone heard or experienced this? I plan on asking my doctor these questions next time I see him, but until then, any information from anyone here would be really appreciated and put my sometimes worried mind at ease. Thankyou.

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killmel's picture
Replies 8
Last reply 9/11/2010 - 8:57pm

Hi Everyone

 

I just had my MRI brain scan & PET/CT scans. I consider the results to be very good. No organ involvement, no brain mets.....Just still have 2 node: .4mm &.6mm in my left thigh.

My primary was in my foot 2005, 1st intransit in thigh removed 9/2009, 2nd intransit in thigh removed 5/2010.

I am considering Rouche BRAF. I am  Not happy about Braf because the response might not be long term & might have to continue to take the pill ongoing with no end point. Also, considering IPI.  IPI scares me because of the potential severe long term effect, but at least there is an end point to the treatment.

Last but not least, I can watch & wait, but that will not cure my cancer, Stage 3c

My preferance would be to do IPI but reading all the post regarding the side effects for IPI scare me. I am very active person & I am afraid my tumors might spread or grow before IPI kicks in (I onlyhave a  .4 &.6mm in left thigh, afraid IPI will spread tumors to organs) or that I might get one of severe side effects.

Has anyone done IPI with minimum side effects?????Need some words of encouragement. Anyone having long term response with Braf??

I need to decide to do "systemic treatment or "wait & watch". I would sincerely appreciate any opinions or feedback, recommendations.

Thank you for taking the time to read my post and replying.

 

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Jerry from Cape Cod's picture
Replies 7
Last reply 9/11/2010 - 9:40am

Promising Treatment for Metastatic Melanoma 'Fast Tracked' by FDA

Sep 9, 2010 12:34:00 (ET)

HACKENSACK, N.J., Sept 09, 2010 /PRNewswire via COMTEX/ -- Researchers from the John Theurer Cancer Center at Hackensack University Medical Center played an important role in a study that led to the Food & Drug Administration's (FDA) recent fast tracking of ipilimumab, a promising treatment for metastatic melanoma. The FDA based its decision largely on the results of a pivotal study published in the New England Journal of Medicine on August 19, 2010 - the same day the agency accepted Bristol-Myers Squibb's application for the drug's approval and granted the application priority review status.

Ipilimumab is the first drug shown in randomized, placebo-controlled trials to improve survival in stage IV melanoma.

"This study, and the FDA's decision, provides new hope for people with this devastating cancer," said Andrew L. Pecora, M.D., F.A.C.P., C.P.E., Chairman and Executive Administrative Director, John Theurer Cancer Center, who led the study at the John Theurer Cancer Center. "We are proud to have played a role in helping move another promising cancer treatment closer to market."

The incidence of metastatic melanoma has increased over the last three decades, and the death rate continues to climb faster than that of most other cancers. According to the American Cancer Society, there were approximately 68,000 new cases of melanoma in the United States in 2009, and 8,700 melanoma-related deaths. Melanoma accounts for about three percent of all skin cancers, but 80 percent of skin cancer deaths. Melanoma is difficult to treat once it has spread beyond the skin to other parts of the body (metastasized). Very few treatment options exist for people with metastatic melanoma.

In this phase III study, researchers randomly assigned patients to one of three treatment groups: those receiving ipilimumab plus an inactive (placebo) version of gp 100, a cancer vaccine; those receiving ipilimumab plus gp 100; and those receiving gp 100 plus ipilimumab placebo. The treatments were administered once every three weeks, for a total of four treatments. The study was double blinded: neither the researchers nor the patients knew which medications the patients were being given.

To participate in the study, patients must have had stage III or IV (metastatic) melanoma, and must have been previously treated unsuccessfully with another cancer drug. They must also have had a life expectancy of at least four months. 676 patients participated in the study at 125 cancer centers.

Those who received ipilimumab, both by itself and with gp 100, lived a median of about 10 months, while those who received only gp 100 lived about 6.4 months. After two years, approximately 23 percent of those who got ipilimumab were alive, while 14 percent of those who did not receive this drug survived. Ten to 15 percent of those who received ipilimumab suffered attacks on their bodies' immune systems (autoimmune reactions), and seven of the 540 patients who got this drug died from these attacks. Most adverse events suffered by study participants, however, were reversible with treatment.

A monoclonal antibody, ipilimumab activates the body's immune system to fight cancer by blocking a protein called CTLA-4. CTLA-4 is a molecule on T-cells, white blood cells that play a critical role in regulating immune responses. CTLA-4 suppresses the immune system's response to disease, so blocking its activity stimulates the immune system to fight the melanoma.

The FDA grants priority review status to drugs that offer major advances in treatment, or that provide treatment where no adequate therapy exists. The projected FDA action date for the ipilimumab application is December 25, 2010.

 

-end

 

Jerry from Cape Cod

It's about kickin' Melanoma's butt! "Meh. Get on with it. Do not feed rabid monkeys. To fear is one thing. To let fear grab you by the tail and swing you around is another." in memory of NicOz

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Anonymous's picture
Anonymous
Replies 4
Last reply 9/10/2010 - 11:52pm
Replies by: KatyWI, Anonymous, Sharyn, jag

Can anyone explain what this means - " There is new focal uptake within each ovary. This is likely physiologic."

and - " There is an ill-defined non hypermatabolic nodule/infiltrate in the right middle lobe. This is an area where previously there was a linear atelectasis." (Follow-up is recommended)

 

 

 

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Linda J's picture
Replies 2
Last reply 9/10/2010 - 3:11pm
Replies by: bill58

It is only day three and I already have lots of inflammation from the radiation.  Because they are doing radiation first before surgery, I already had lots of swollenness around the tumor on my butt.  But now that the radiation has started, the groin area has flared up and it is only day three.  What is going on with my body?  Am I going to be in crazy inflammed pain by the end of the 5 weeks?  I wonder if my lymph system is backed up because of the exisiting cancer and is having a harder time now with the radiation.  I'm hoping the swelling goes down because the whole purpose of the radiation first is to lessen the surface area that they will have to cut out.  As it stands now, if they cut out all the red, I would be losing an entire butt-cheek!!!!

Any thoughts?

Linda J

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Sherron's picture
Replies 1
Last reply 9/9/2010 - 4:34pm
Replies by: Linda J

Jim has a lump under the skin in his right breast/chest area.  It is causing him a little discomfort and it is itching?  What does the itching mean?

He has about 5 other places (lumps)...some get big, ache a bit, and then get smaller...What does all this mean?

Thanks for any responses!

Take Care,

Sherron, wife to Jim

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Sharyn's picture
Replies 1
Last reply 9/9/2010 - 6:28am
Replies by: Linda/Kentucky

Hi everyone,

First of all, I've recovered well from the mastectomy. Stitches and staples came out last Thurs, and the drain came out on Sat. I'm still in bandages, but that's no big deal. I'm out and about as usual, going up to the cabin on weekends, and riding the quad. I have to wait a few more weeks for my prosthetic breast, but in the meantime, I have an insert for my bra, compliments of my friend Linda at the Home Health Care store. I asked her if she had anything better than the 4 pairs of socks I had stuffed in my bra, so she fixed me up. LOL!! 

Anyway, all my plans are in place for the Ipilimumab treatment. Jim and I are heading to Montreal on Monday evening (13th). I have bloodwork, EKG, CT scan and appointment with Dr Mihalcioiu on Tues, Orientation for treatment on Wed morning, then we head home that evening. 

Back up again for the actual treatment on the 23rd -- fly up on the 22nd, treatment on the 23rd, then home that evening. The treatment is given via IV for 90 minutes. I have to go back every 3 weeks for 12 weeks, then we stop for scans and see how I'm responding, and go from there -- either another 12 week run, or maintenance of one treatment every 3 months.

No need to respond. Just wanted to update you. BTW, our vacation plans fell by the wayside. Things got too busy at work for Jim, so all he can take off are the few days he's in Montreal with me. Bummer! :>(

Hugs

Sharyn

Stage IV
 

WLE, SNB, ILP, LND, PV-10, Uterine mets (Hysterectomy), GM-CSF, WBR, RT, Temodar, B-RAF negative, SRS (Novalis) to brain, Breast mets (Mastectomy), currently on Ipilimumab compassionate use trial Mets to brain, lung and sub-qs. Craniotomy.

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Mom of 3's picture
Replies 3
Last reply 9/8/2010 - 8:03pm
Replies by: msue5, washoegal, Jackie W

I was recently diagnosed with Clark's Stage IV melanoma.  I went n for just a check up and chose to have a mole removed because it was ugly.  The doc said it didn't look suspicious, but he would send it off anyway.  Low and behold, it came back melanoma.  I have had a chest x-ray done and blood work and everything came back normal.  I am going to UVA Cancer center because they said my margins weren't clear that there was still some situ left and that they would also do a mapping and check my sentinole node.  I am just wondering if anyone else has had similar.  My mole was 1.5 mm and was not ulcerated and also did not regress after removal.  Anyone have any idea what is going to happen next and if some of all of this news is good?  I am only 31 and have three very small children and am scared to death. 

Thanks for anyone who replies!

 

Kimberly

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NancyGM's picture
Replies 5
Last reply 9/8/2010 - 5:17pm
Replies by: Vermont_Donna, NancyGM, washoegal, Anonymous

I have been on Social Security since 2007. My re-evaluation came up a few months ago. I have been working again(part time) for the last year and still recieving disability, medicare and medicaid. I just recieved notice my benefits will cease. Anyone run into this? I was under the understanding that stage IV is considered a condition that makes one eligible- even if one has been NED for an amount of time. I have no insurance and need my medicare to have check ups and scans. Any advice for appeal process? Thanks

NancyGM

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Jill and Eric in Fl's picture
Replies 7
Last reply 9/7/2010 - 9:25pm

Hi sorry I haven't posted in awhile, Eric received 2 doses of Ipi and was itchy and running a fever 10 days after the first dose, after the second dose he was still itchy and the fever came and he had lots of aches and pains, he said his bones hurt like they did after he got the Neupogen(sp?) shot after chemo, I took all these as good signs that he was having an immune response, every time we talked with Dr Weber at Moffitt about these side effects he said it sounds like its from the medicine and not to worry about it. Then on Aug 23rd, 12 days after his 2nd dose, he woke up in the middle of the night in extreme pain, it was so bad he couldn't move and he had a panic attack, so we called the ambulance and he went to the ER. We live over 2 hours from Moffitt so we went to our local hospital where Eric had received treatment before being transferred to Dr Weber at Moffitt. Eric was having lots of gas and bloating and only one episode of diarrhea and then he got constipated from the Imodium. His belly gurgles and rumbles so loud it would wake me up at night. Eric kept saying if he could get rid of the gas and full feeling he thought the pain would go away .The ER did a  full work up, xrays and a ct scan and could not find a reason for the pain, morphine took the pain away and after several hours they sent us home (with no pain meds). They said the lesions in his liver had gotten larger but they were comparing it a scan in May before he was transferred to Moffitt so I wasn't concerned and figured the progression occurred before starting IPI, well after a week of pain and not much relief we were back at the ER on Sun, Dr Weber suggested we start him on oxycodone so home we went again. Eric was scheduled to get his 3rd dose this past Wed. The oxycodone wasn't helping with the pain and he was still unable to move very well, Dr Weber looked at him and admitted him to the hosp. Dr Weber was headed out of town for a conference but he said at least 3 times during the visit Eric didn't need another CT scan, he said he believes it is the liver tumor hitting some nerves and causing such pain and he would have the "pain team" here at Moffitt get the pain under control and he would see him in 3 weeks for a final dose of IPI. He explained that he couldn't get the 3rd dose so he had to skip it but the 4th dose would be in 3 weeks. He said the pain was either tumor destruction (he said that 3 times), tumor progression but a ct wouldn't be able to tell the 2 apart. Anyway we were admitted Wed morning and they set up a morphine pump and Eric's pain level was still 7 or 8 on a scale of 10, the docs decided to do a ct to rule out possible causes even though I told him he just had one 9 days earlier, they ran all kinds of blood tests to find out what caused his temp to rise even though I told them it was probably from the IPI. What upset me was Eric has not eaten in days and after 24 hours in the hosp they hadn't done anything to help the pain, the morphine was no longer working. What set me off was when the intern doc came in after 24 hours and said the attending MIGHT stop in to see him tomorrow, I had to get a little ugly and ask where this pain team was and why were they not helping my husband. The intern doc said the ct didn't show anything except that his liver tumors had grown by a cm or two and the other in his spleen had gotten bigger too, they say his colon has no colitis or inflammation isn't isn't blocked in any way. They said Eric could try to eat solid food, he was so hungry at this point, I got him a yogurt and as soon as he finished his pain level went from a 5 all the way to a 10, he started sweating, got really cold and he was shaking so bad from the pain the whole bed was moving. The nurse saw all this happen yet when she asked the doc to give him more morphine he said no. Well I lost it,I got everyone I could think of involved and within 10 mins the pain team showed up. They explained that he was opium resistant and the morphine isn't working well, anyway they got his morphine level raised and he was back down to a pain level of 5 or 6 and they were going to come up with a plan. I asked the docs if the plan was to just keep him comfortable until he passes away and they were shocked I asked that, they said his bloodwork was all good his LDH  was high but not too bad. I just cant see how I will ever be able to take him home if he is on a morphine pump. Meanwhile his belly still makes these awful sounds and he says the gas makes him feel so full. Anyway to make a longer story a little shorter, the emailed Dr Weber in Belgium and sent him the ct results and Dr Weber, emailed back and said he was taking him off IPI and he would see us when he got back in town to go other other options we might have. Well the attending doc came in this morning and basically said"we are sorry you have progression of disease, Dr Weber is taking you off IPI and there is nothing more we can do" The pain team recommended steroids and they gave him his first dose and he said he felt better, he got his second dose this afternoon and when I got back in town he was sitting up in a chair he was smiling, talking, laughing, almost his old self. My gut feeling is that while the liver tumors  may be hitting a nerve he was having some sort of gastrointestinal issue that the steroids has helped clear up, I still feel like he was having a response to the IPI, he had so many side effects and his eyebrows which we light in color are much  lighter now with a few white hairs but the hair on his head hasn't changed. I just don't understand why he cant get the last dose of IPI and give it a chance to work and why if they know IPI causes tumors to get bigger before shrinking, why he would be taken off. Dr Weber says that if it is tumor destruction it can hurt and he sent us to the hosp for pain management and now we are off the trial, I am confused. Does anyone know if there is a clause in the compassionate use trial that says if they show progression during the 12 weeks that they have to be taken off? Dr Weber acted like he didn't want a ct because he was afraid the tumors would look bigger and maybe he knew that would remove him from the trial, I don't know I am just guessing. Sorry this is so long, I am in a hotel room away from my kids and I am emotionally and physically exhausted. I went home today to work (we own our own business and I can't afford to get behind)and get clothes, we were here 2 days with no extra clothes or anything, my mom stayed with Eric but we can't afford to keep staying in a hotel for too much longer so I think I will send my mom home tomorrow and sleep in the hosp with Eric, ugghhh I am tired here are my questions:

What after IPI? He has a brain met, had radiosurgery and it shows no electrical activity and is shrinking so we assume its dead but I read all these trials say no brain mets. Dr Weber has mentioned BRAF in the past but we haven't been tested for that, what other options are there?

Am I wrong in thinking that maybe just maybe the tumors appear larger on the CT is because the IPI is working and they are "progressing" before they shrink?

Is there anything that stands out to you guys that I or the docs aren't thinking of? I find it amazing that on morphine alone his pain level was still a 5 but now after 2 doses of steroids its a 1 or 2, doesn't sound just like tumor pressing on nerves to me, what else might it be? I have said all along its kinda like colic but the docs didn't buy into that

Wow sorry this is so long, Dr Weber will be back in the country on Sun but considering Mon is a holiday I probably won't see him until later in the week and in the mean time my mind is just spinning. Oh and another thing that kept making me mad was the attending doc, the head lady of the team, kept calling IPI, chemo and was trying to explain that with all chemo there are side effects and this chemo only has a 4% response rate, it just goes to show that even the docs in the same hosp don't know what is going on. Eric kept trying to correct her and explain to her that IPI is an immunotherapy but she still kept calling it chemo, come on Dr Weber get home soon so we can get some answers!!!

Thanks

Jill

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