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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jmmm's picture
Replies 1
Last reply 9/4/2011 - 12:33am
Replies by: FormerCaregiver

My husband started Yervoy in May with his last dose July 5.  He had two golf ball sized tumors in May--one in his GI tract, and one near his heart.  At his 14 week scan (mid July), it showed the GI tumor gone and the tumor near his heart "dead" and half the size.  There was an area of concern in some lymphnodes in his abdomen, so we waited and rescanned last week.  The CT scan (previous scans had been PET scans, not sure if that matters or not), showed the mass in his abdomen still there, but unchanged in size.  It's in a lymphnode.  And an additional mass in a lylmphnode in his neck.  The 2 bigger tumors from May are completely gone!  We're so confused.  The Dr. thinks it's disease progression--he had a biopsy done on the neck one yesterday, but from what we've read on Yervoy, it can be a delalyed reaction.  Is it possibly that the Yervoy worked on the two tumors then stopped working and now this is new disease and the yervoy is no longer working?  Or could we wait 2 months and maybe the yervoy would work on these two tumors?  We're so confused and devastated, because we thought he was a yervoy resonder and ecstatic that it worked.  Any thoughts???  We'll get pathology report next week sometime, but we're just anxious in the meantime.  We hadn't read anything about the yervoy working so well for just a few weeks.

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PlantLady's picture
Replies 11
Last reply 8/13/2012 - 10:13pm

My husband, Ron, has been struggling with weight loss, but more frighteningly, muscle loss.  I've posted about this on the board before, when he was having such a bad time with diarrhea from the 2 Yervoy treatments (Yervoy treatment halted).

I've researched (Googled, more accurately) and found that the particular steroid he was prescribed, Dexamethasone (a flourinated steroid) is well-known for causing muscle wasting.  That, while all steroids can cause muscle loss, this drug is the worst of the lot.  Switching from a flourinated form to a non-flourinated steroid (such as Prednisone) could help slow this muscle wasting .   Gee, I wish I'd known that when he was first prescribed a month ago!  We asked if he could be switched, but now that Ron is slowly (frustratingly slow) tapering off, the doctor doesn't want to switch to a different steroid. 

Yervoy can cause weight loss.  Cancer can cause muscle wasting and weight loss.  We really didn't need anything else to contribute to the muscle wasting aspect!

I have started giving Ron more protein.  I make sure every meal contains good quality protein.  We're eating lots of fish (wild caught, good oils) and some pastured poultry/meat.  I'm making him protein shakes twice a day, with MCT oil, BCAA powder, Fish Oil, probiotics added.  We try for around 100 g of protein per day.  This is on top of lots of berries, vegetables, some whole grains, wheat grass juice, and supplements.  It is hard to give him enough calories on a healthy diet, but, believe me, I'm packing them in there!  According to the Life Over Cancer book, by Dr. Block, he should be consuming around 2600 calories to help counteract the weight loss.

I had a hunch that Psyllium might help his diarrhea.  He has 2 servings a day, mixed with water.  This bulked up the stool, which had been watery.  Now the stool is normal.

He has stopped dropping weight!  He has put on a few pounds.

He's still on the Dexamethasone, much to my irritation.

Although he still has a weak voice,  and a bad limp because of Drop Foot/neuropathy, we are hopeful that he can at some point resume the Yervoy therapy.

CJ 

If you're going through hell, keep going. ~ Winston Churchill

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himynameiskevin's picture
Replies 10
Last reply 9/10/2011 - 8:23am

Well, I just got back from the NIH for my monthly scans and it turns out all the tumors they're tracking in my lungs are still stable and/or possibly a tiny bit smaller. Except for one, unfortunately, In my left lung (I don't know if that's their left or my left) They think and hope that this one that appears to be growing is just being defiant of the therapy for reasons we don't quite understand and hope that the others will continue to shrink and stay stable for a long time to come.

So they want me back in 4 weeks, where I will get another CT and PETscan. If the scan shows it's still the only one growing, then the next day they're growing to do surgery on my lung and remove it manually. Hopefully with small incisions, a small instrument with a camera on it and minimal downtime if I lucky. If the scans show more than the one growing, then the ACT I think will have run it course, and there will be no surgery, but hopefully other possible options.

Strange times when you find yourself hoping for lung surgery. ;)

We'll see, you know, maybe there'll be some unexplainable miracle and the thing will just disappear. Maybe everything will, and they'll just send me home with a congratulatory handshake. They say anything is possible right?

Anyway, that's my update, overall I'm doing real good, still working and living as normal as I ever did. We'll see what happens in a few weeks. I'll let you all know.

Thanks for the ongoing concern and support.
-Kevin

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rjcravens's picture
Replies 4
Last reply 9/5/2011 - 8:24pm

So yesterday I went to see the Dermatologist for my three month skin check. He tells me that he doesn't see any "areas of concern" and that he will see me in three months. As I am sitting there listening to him, I almost went into panic mode. I realized that I am trusting my life in this mans hands. If he misses something, will I find it? If we both miss it will it be widespread before I see him again in three months? I cannot handle the fear of not being in control of this situation. (Although I know I am not the one ultimately in control)  The spot on my arm come up in Jan. It grew so fast and so deep. It scares me so bad. Being a nurse I have seen to much and know too much. I know that docs have their good days and bad just like all of us. I left there still having this awful feeling in my stomach that something terrible is going to happen. I have had this gut feeling for two weeks now.

So then after that apt., I go to see the psych doc for the first time since all this started in Feb. I am telling him about this stage of fear that I can't get through. He prescribes Cymbalta 90mg. He says its all normal and in a couple of weeks I should notice a difference. (Note that I have been on cymbalta 60mg since June). He then begins to ask me about my support system. I have to tell you that I am so blessed in this area. I have the greatest husband and kids. My family and friends are supportive. I will never be able to pay my mom back for all her support. The entire family has went above and beyond. Its then that I realize, I am not afraid to die, I am just afraid of leaving my family. I want to see my kids grow up and spend time with family and friends (bargining). I know I am a stage 2b but I am telling you I have this really bad feeling.

The doc also gave me Remeron to help me sleep and not stay up thinking about things all the time. Which brings me to my next issue. My body has to be so confused. I am taking Ritalin in the mornings to fight the fatigue and be able to go to work for 12 hrs, along with the Cymbalta. Then at night i am taking the remeron to help me sleep and on the days i have injections i am taking Zofran and Ativan. My poor heart doesn't know wether to speed up or slow down. Can this be good?

I am done rambling now. Maybe its the interferon that is making my mind go crazy. Maybe its not. I just wish I could get over this whole fear stage.

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MariaH's picture
Replies 6
Last reply 9/17/2011 - 10:48pm

Dave finished his first round of IL-2, taking his last dose at 2:00 pm on Thursday.  If obtaining an immune response was the goal, he did it.  Blood pressure dropped to 70/35, heart rate tached - 160, and a 104.2 fever on tylenol, respiration down to 89 and put on oxygen.  It was the most brutal thing I have ever seen my husband (or any human being, for that matter) go through.  However, by 6:00 am he was sitting up in bed, and by 9:00 taking a shower.  We left the hospital at 2:00 pm on Friday, and other than feeling tired, the itch, and a slight headache he's feeling OK.

He was only able to do 6 bags, since the side effects wouldn't hit for 2 hours after the infusion and lasted right through the next scheduled dose.  That being said, we met a woman there who was only able to do 6 bags each week for her first round as well, and it worked on of her lungs mets (which Dave has) - and she was in for her second round.

I can't thank the people on this board enough for all the info regarding IL-2.  Nothing was a shock to us, and Jane's list brought up every issue he had. 

Hopefully his response means it's working - he'll be heading in for his second week on the 12th, and I already know the waiting for scans will be brutal. I pray this is working -

Best wishes to all the mel warriors out there,

Maria

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JerryfromFauq's picture
Replies 11
Last reply 11/17/2012 - 12:02pm

Putting New Melanoma Drugs to Work in Community Practice
Elsevier Global Medical News. 2011 Jul 18, JS MacNeil

Euphoria - there is no better word to describe the mood in the melanoma sessions at ASCO. For the first time ever, oncologists have two new drugs that can prolong the lives of patients with advanced melanoma. They also have a host of questions as to how to bring ipilimumab and vemurafenib into community practice. We asked four experts during the meeting for their thoughts on what comes next:

• Dr. Paul Chapman of Memorial Sloan-Kettering Cancer Center in New York; lead author of the BRIM-3 study of vemurafenib vs. dacarbazine in newly diagnosed patients.

• Dr. Jedd Wolchok of Memorial Sloan-Kettering Cancer Center; lead author of the phase III trial showing the efficacy of ipilimumab plus dacarbazine vs. placebo plus dacarbazine in newly diagnosed patients.

• Dr. Vernon K. Sondak, chair of cutaneous oncology and director of surgical education, H. Lee Moffitt Cancer Center & Research Institute in Tampa.

• Dr. Alexander M.M. Eggermont, general director of the Institut de Cancérologie Gustave Roussy in Villejuif, France.

Question: Should ipilimumab and vemurafenib be used together?

Everyone we asked said no, not outside of a clinical trial at least for now. No one knows whether the combination is safe or effective.

Dr. Chapman: We are about to start a phase III trial combining these to see if it is safe and making sure that vemurafenib does not inhibit the effect of ipilimumab. We all hope that this will result in sustained complete responses. That is what we all are looking for.

Dr. Wolchok: The natural next step that many of us are considering is how to integrate these two forms of therapy together. Vemurafenib directly targets the tumor by inhibiting BRAF kinase; ipilimumab really treats the patient by starting an immune reaction that hopefully will control the disease. These are very different approaches to cancer therapy. They are in no way mutually exclusive, and I believe them to be quite complementary.

I think it is important that the combination be explored in a clinical trial because I could make a list of reasons why these two drugs would work together; I could also create a list of reasons why they might not work well together and may even be antagonists. So, I think before oncologists begin to combine potentially approved medications outside of clinical trials, we [need to] have some idea that this is a safe and effective way to go. Until then, I think monotherapy is the best path forward outside of a clinical trial.

Dr. Sondak: If you combine ipilimumab with something else, sometimes the side effects aren't what you expect. Don't just take a patient and give them both and see what happens. That's not safe. You have to do this in a controlled way a research study as quickly as possible because it is the obvious next question.

Dr. Eggermont: I think at this point they should wait at least for the safety data on the combination.

Question: So which agent would you use first in a patient who has a BRAF mutation?

Again, there was unanimity - with respect to the patient who is very, very sick.

Dr. Chapman: I think that is a question is that is still open. Where I am on this question right now is that for a patient who is relatively well, who has a fairly good performance status, I would think about using ipilimumab first because that person may have time to respond to ipilimumab since it does take 3-6 months to have the full effect. On the other hand, a person who has a poor performance status and is sick and does not have time to respond to ipilimumab I would treat that person up-front with vemurafenib.

Dr. Sondak: I think there is going to be uniform agreement throughout the melanoma community that if you have a BRAF-mutant patient with widespread disease, symptomatic disease, high tumor burden that person is going to go immediately on to vemurafenib because nothing else is going to get a rapid response, a rapid resolution of symptoms.

The question is going to be [what to do] for 80% of patients who are BRAF mutant but have much less acute symptomatic disease. Maybe they have some lung metastases, some subcutaneous nodules, [and] they can't have it all removed surgically but they are still not in dire straits. And I think at our institution we are going to be very motivated to continue to use the immunologic therapies - the IL-2 for some patients, and ipilimumab for many patients because of the possibility that they will get a big benefit at the other end, not an immediate benefit but a long-term benefit. And then if that doesn't work, I think vemurafenib.

Dr. Eggermont: BRAF-positive patients especially the ones that have rapidly progressive disease or bulky disease that have little time - they will all be treated up front with the BRAF inhibitor. The BRAF-positive patients that have very small disease that is not rapidly progressing could actually also be managed by ipilimumab on first line and only on progression be managed by the BRAF inhibitor because ipilimumab needs more time to work with patients, to kick into activity and into an antitumor effect. ... All BRAF-negative patients would see ipilimumab in first line. That is for sure.

Question: The ipilimumab trial paired ipilimumab with dacarbazine. Is DTIC still an option?

Dr. Wolchok: Looking at the result as someone who has been taking care of patients with melanoma using ipilimumab for several years, I think it is still unknown whether dacarbazine should be added. My own opinion would be to oncologists in the community that if they are going to give ipilimumab at 3 mg/kg to stick with the monotherapy label because we really don't have data comparing ipilimumab with dacarbazine alone at that dose. And so I think we stick with what we know produces an overall survival benefit.

There are reasons to imagine the addition of dacarbazine could make results better by killing some cancer cells and releasing some antigenic debris that would serve as a target for the immune system. Chemotherapy can also be thought of as changing the tumor microenvironment, which might be advantageous, but chemotherapy could also be immunosuppressive. So we could really make a case either way that dacarbazine added to or detracted from or left things just the same.

Question: Will interleukin-2 still have a role in melanoma treatment?

Dr. Sondak: I am still going to use IL-2, and it makes the most sense if you have someone who uses IL-2 most of time, you will want to use that first before you use anything else. Why? Ipilimumab is tough on the patient. We want them in as good shape as possible. ... We know if they get IL-2 first and then get ipilimumab; the results are just as good, if not better. We don't know the opposite way. And we also know that a lot of people on ipilimumab get side effects. They wind up on steroids and other immunosuppressive drugs that would make it very difficult to put them on IL-2.

Vemurafenib is going to change a lot of things. A lot of people are too far gone to have surgery, too far gone to have IL-2. Now we have BRAF mutant melanoma [patients] who will get vemurafenib, and shrink down... If we could keep a close eye and figure out when is right time, we are going to do more surgery and maybe IL-2 in those patients because we are going to restore them to place where IL-2 is going to have more room to work. But it's not going to be 80% of people getting IL-2. It is going to be a very restricted group of people treated by a very specialized group of doctors.

Dr. Eggermont: I think IL-2 will move down in the options list. IL-2 will remain as an option in second or third line, and IL-2 will also be an option in combination with ipilimumab because [Dr.] Steve Rosenberg already did a trial in 36 patients ... and the majority of the complete responders are alive 6 years and longer and are still in complete remission (ASCO 2010, Abstract 8544). The combination of IL-2 and ipilimumab will be relaunched, I am sure.

Question: And interferon - Where will it fit in?

Dr. Sondak: We don't know how long we should treat people, how intensively, and how we should combine the new and the old, and the data that we have just doesn't sort it out. On the other hand, if you look at the whole landscape, it actually makes adjuvant treatment with interferon more important now than it used to be.

It's very clear that interferon treatment does delay recurrences in a substantial fraction of patients. It may not cure many people, but it delays recurrence in quite a few people, and right now today we are so much better off than we were in melanoma 2 years ago and I have no doubt that 2 years from now just with stuff we heard about at this meeting we will be much more clear on how do we use how do we take care of side effects not to mention other new exciting drugs that we hope 2 years from now will start to be available.

In the past we debated, does it even matter that we delay recurrence. The ASCO answer should be, "It absolutely matters to our patients." So interferon and any form of adjuvant therapy is suddenly a bridge. It is a shaky bridge - made with some ropes and a few planks - it isn't very sturdy to walk on, but we're trying to get from here, one place where it was safe to another place where hopefully we are better off and not at the bottom of ravine. It's real exciting - not just the data we already have but for the future and how many patients this will affect positively.

Dr. Eggermont: I think you need to separate the new drugs from the question, what are we going to do in adjuvant? In adjuvant right now, we will still have to wait for about 2.5-3 years for the outcome of the EORTC trial that randomized in double-blind ipilimumab vs. observation in patients with high-risk lymph node positive disease. That answer about ipilimumab in the adjuvant situation will not be there before 2.5 years from now. That means that until then there is only one kid on the block in the adjuvant setting, which is regular interferon, and the currently novel approach of pegylated interferon.

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

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Becky C.'s picture
Replies 11
Last reply 9/5/2011 - 8:30pm

Hi. I am stage 3a, had microscopic cells in sentinel node, had 6 more nodes removed that were all clear. I was given a very good prognosis by my oncologist, he said it is most likely that I am cured but he can't tell me one hundred percent, because it did get to the one node. He said there is that small chance that cells could bypass the nodes or that cells could have been in lymph vessels in between the primary and the lymph nodes. I don't feel that worried about the nodes, I think it most likely stopped at the sentinel. i do worry alittle more about the other, because I did have a high mitotic rate. My breslow was not real deep, 1.57mm. Does anyone have information about how often this happens? In the reading I have done, I have not read any examples of  a recurrence in the lymph nodes after having a dissection.  If it did, would it go to my remaining nodes that are there? Thanks, I appreciate any feedback

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5jenjen5's picture
Replies 10
Last reply 9/9/2011 - 4:03pm

I had a .42 melanoma removed from my calf in May and just had more removed from my wrist and do not know the depth. My question is: I am a very small women and the melanoma on my wrist is very close to the bone is this a problem?

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Shimian's picture
Replies 4
Last reply 9/3/2011 - 3:31am

My father's deep primary (4mm) on his feet was surgically removed in early 2009. We recently noticed a few  little dark new spots not far from his primary. The dermitoglist did a punch biopsy on one of the spots in Mid Aug 2011 and the result shows Melanoma InSuit (less than 1mm). We like to surgically remove those reoccured spots asap. But owing to scheduling and other complicating factors, the doctors can't perform the surgery until a few months after the biopsy. And the doctors say it is OK to leave the Melanoma Insuit for a few months as those spots are not invasive. We suspect doctors' rationale (or excuse?) and are concerned about the long lead time between biopsy date and surgery date.

Nomarlly how soon shall the surgery be performed after bad biopsy result? What is the max time surgery should be done after the biopsy? Not sure if the biopsy would stimulate the melanoma growing into more advanced stage in a few months. The doctors dismissed our concerns. But I like to check with your guys on the forum.

Appreciate if you can share with us your thoughts and experieces.

 

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manu000's picture
Replies 3
Last reply 9/2/2011 - 7:34pm

I had read about this technique, however, so far I have not informed because we had available and that the drug ipilimumab for BRAF mutation, but in a week these options are gone.

I wanted to ask you for information about this technique, I know that few people have the characteristics to use it. Have any of you tried?

What are the requirements?
How does the treatment work?
There is a withdrawal prior to cloning?
cloning of cells for how long?

They welcome any information and experiences you have.

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dani_elle's picture
Replies 3
Last reply 9/2/2011 - 10:03am

Hello everyone
I'm in need of some opinions/advice for my husband.
He's currently stage 3... And he just got his 2nd set of ct results back today. His first ct scan showed a 5mm lung nodule back in may. Now 4 months later the nodule showed to have "possibly" grown 2 mm more. So he now has a 7mm lung nodule. His oncologist said he would prefer to wait it out another 3 or 4 months and compare again. I understand that sometimes these nodules are normal but for some reason we're still uneasy about the 2mm difference, even though the Dr has clearly told us they don't know if it's melanoma or not.

Our second concern was regarding interferon. My husband had decided he wanted to do the high dose interferon rather than wait and observe. So we went in to see the oncologist with that in mind. Well turns out he has to get the 5 year low dose because infusion centers were full. I don't get why that was even an option if it wasn't going to be available, but we figured something was better than nothing and the dr said it was pretty much the same thing. So I've been researching and have been getting different answers. Can you guys share some info with us regarding high vs low dose interferon!?!?

Thanks.

-Dont Tell GOD How big your storm is, tell your storm how big your GOD is!

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Ashykay's picture
Replies 2
Last reply 9/2/2011 - 12:36am

Hi there,

Thought I'd keep updating the process with Mum. Since I last posted the hopefully immunology response being the vaccine & Yervoy, there have been a few changes (not significant). Immunology response was Yervoy + vaccine created via large biopsy of tumour on spine (+ chemo before Yervoy to get access to Yervoy).

Radiologist & oncologist are almost sure that the radiation that Mum had for 4 weeks on her spine had little or nil effect, as they alluded to earlier. The oncologist is not confident that Gleevac would work (which was his only alternative apart from seeing an immunologist)...which is what Dad and I suspected all along, as Mum is not positive for the C-kit mutation. We will revist this if need be - i.e. if immunology approach doesn't work.

Mum has seen her (stupid - it appears, no offence to generalise, that they are all completely full of themselves!!!!) orthapedic surgeon....he wants another MRI as he personally does not entirely believe that the radiation hasn't worked, and believes that an MRI may give him a better idea of whether radiation has affected inside of the tumour itself. He talked about all the risk factors involved in taking this large biopsy due to the location of Mum's tumour, but has agreed, however, that he will basically do the large biopsy if required, whcih is a relief.

Mum still needs to talk to the immunologist now....but Dad is talking about just trying Mum on chemo first along with Yervoy before we go into the vaccine/large biopsy part of things to minimise risk. They also said if Mum gets another metastasis that they could formulate the vaccine on that (at the moment, apart from a spot on her leg which was radiated, there are no other metastasis than the main tumour on the spine).

Things have been challenging for me lately. We received some news that there is also a genetic syndrome running in the family and my Nan has tested postive for it...which means that my Dad + myself could be carriers...which would affect my ability to have children naturally. They say bad news all happens at once (and in three's!)....

So that's where things are at now...will keep you updated once the next appointment comes up.

Hope you are all doing well and keeping positive... x A

 

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CKasper's picture
Replies 21
Last reply 9/6/2011 - 7:14am

In 1984 I was pregnant with my second child and was diagnosed with Melanoma.  Two skin lesions one on my right wrist the other on my right ankle.  I was to further my treatmet but I prayed to God to let me live so I ignored it and lived until 2005 when it came back with a vengence.  Stage 3B, i think.  In 2006-2010 when through surgery, and all kinds of nastsy illnesses.  Then came the biggest scare of them all.

October 2010 my husband of 36 years left me for a girl 20 years younger then he.  He said he just couldn't live with someone dying. So he took most of the valuables, left me no money, no food, no heating fuel for winter, a bunch of unpaid bills and I was in shock..  This has been just as hard if not harder to deal with than my second ourrence.

 

36 years down the tube, thank you melanoma.

 

C

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Wetterhorn's picture
Replies 10
Last reply 9/3/2011 - 11:16pm

Hi all,

Been a while since I have posted, but the nerves have driven me back to the site, partially looking for answers, partially just for a little comraderie.

So, quick update on me - I was NED for 18 months until this past Feb, when I had a lesion develop in my small intestine. Had surgery to remove it and all was looking well until complications from the surgery struck with an intestinal obstruction. 3 hospital stays later, I finally had surgery again to remove a ton of scar tissue that had formed (and was the cause of the obstruction). At the time of my 2nd hospital visit, prior to surgery, a small lesion was detected in my liver by CT.

So, instead of surgery right away, I opted to go on Ipi. I go in for my last treatment on Tuesday next week and will get scanned shortly thereafter. However, this week I started having very bad headaches. They have not gone away since they started on Monday. I am scheduled for a Brain MRI tomorrow, and obviously a bit of a nervous wreck over this fearing the worst. 

Question - Has anyone else experienced headaches while on Ipi? I'm assuming headaches are a symptom of a brain lesion, are there others I should be on the look out for? I don't get results until Tuesday.

Bummed and nervous.

Wetterhorn

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Terra's picture
Replies 3
Last reply 9/5/2011 - 8:31am
Replies by: Terra, MariaH, jimjoeb

DOes anyone know how I can get HLA testing done in Canada I understand it is a simle blood test and I would like to get here while doing radiation before we go down to NCI so they have everything when we get there

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