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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yoopergirl's picture
Replies 5
Last reply 4/13/2012 - 2:59am

My last ipi infusion was Feb 20th, that was the 3rd one, since I got side effects bad enough to put me in the hospital, the Oncologist will not give me my 4th one. After the second infusion I had gotten very itchy with no rash and then that left, then the stomach issues and Uevitis with eyes after the third. Now that my eyes are getting better I again started with the itching but now have the rash too, my tumors on my arm do not seem to be shrinking just by sight. I see the Melanoma specialist on the 23rd for blood work and a skin check and then 4 weeks later another scan. We are still hoping for a response but I don't know what to think with all these side effects. Has anyone been throught this many? Thanks for any responses. 

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nfh's picture
Replies 3
Last reply 4/16/2012 - 9:37am
Replies by: nfh, Bonnets

Apologies for the somewhat dramatic sounding title but, well, that’s pretty much the end goal of the idea I’m going to lay out below in a somewhat epic post. Hope it’s not too long...

---

What if we could stop someone getting melanoma, for good. I mean, stop it happening in the first place. What if we could make it so no one would ever have to hear those words “I’m sorry - it’s melanoma”. Not wait until it happens and try and cure it, not spend years undergoing "high risk" surveillance, worrying it’s going to happen, or come back, in an attempt to catch it early – what if we could stop the cancer from ever appearing to begin with.

Somewhat incredibly, it’s looking like that “what if” may actually be possible – but it’s going to take a lot of effort from us, the community, and a heck of a push of people power if we want to make this a reality. And God knows I do.

There’s been a lot of research done over the past few decades into cancer, and specifically melanoma, but I think everyone will agree that the sad truth is, while a lot of groundwork’s been done, there’s been precious little progress made in terms of new treatments that make a real difference. We’re still seeing drugs that buy us an extra few months of time, at a cost of high five figures, or low six figures a course. And with people’s lives at stake, that’s simply not good enough. Meanwhile, countless money’s being spent on studies that simply tell us how many people are getting melanoma at the moment, and try to figure out why, leading to the same contrasting information we’ve all heard, over and over again – increasing sun exposure’s causing more people to get melanoma, yet more and more people are working indoors, and paradoxically, are therefore getting less exposure. Children aren’t going out enough to get enough exercise, and are becoming obese, yet are being exposed to too much "damaging UV" radiation, causing melanoma in their early adulthood. Makes sense, right?

Nope. It seems that a lot of the money that goes into melanoma research – and science in general - is going into the wrong places, funding studies of limited scope, or ones that don’t add anything to our understanding of the disease. And that’s the saddest part of this, as the money could do so much more. (see - http://www.nytimes.com/2009/06/28/health/research/28cancer.html?_r=1). While I don’t disagree that we need an effective treatment, and I fully agree that this needs funding – because God knows we still need a cure, and we always will – the area that stands to create the most benefit for mankind as a whole – that of prevention - has been pretty much entirely overlooked by the research community. Perhaps that’s because of the (entirely unproven) theory that the increase in melanoma is down to us lot just being stupid and going out in the sun too much – maybe, in the research community’s eyes, they seriously think the preventative measures we have are already enough - if we’d just have been that little bit more careful, “seek shade”, “wore sun protective clothing”, and stayed indoors between 10 and 4 (basically, the entire day), we’d be fine. We’d all have rickets, be flat lining in vitamin D, and never see anything of what life has to offer, but hey, we wouldn't be at risk of melanoma.

But the sad truth is, we still have no idea what pattern of sun exposure causes melanoma. We don't even know whether being “exposed” to the sun is more important when you’re a child, or an adult. And don’t get me started on how unscientific the whole epidemiological field is. I have yet to see a definition of “intermittent sun exposure” that’s consistent from study to study. Most, incredibly, don’t even attempt to define it. And how scientific is that? What does it actually mean? Isn’t *everyone’s* sun exposure intermittent, seeing as few stand outside all day, and even if they did, the sun rises and sets anyway? It’s a nonsensical term, without definition, that’s open to far too much interpretation – yet “intermittent” exposure has become established as the most important sun related risk factor.

The whole field’s full of paradoxes. In the UK, for example, the highest rates of melanoma are found in Torbay (by the sea), Plymouth (by the sea), and Oxford, which is about as far from the sea as you can get. There are no patterns, no trends, that show exactly what’s happening, and not a sausage of proof that there’s anything we can do to that will actually, 100% prevent it. The relative risks for the amount of moles you have are many times higher than those for sun exposure, so even if we did know what pattern of sun exposure caused melanoma, it likely wouldn’t make that much of a difference, as seemingly the most important risk factors are genetic. Yet all the researchers seem to be doing at the moment is shaking their heads, quietly tutting, and putting all the blame on silly old us, our holidays, and our leisure time spent outdoors.

I know, I know, not all researchers are that judgmental– and I apologise to anyone who knows a researcher who’s working diligently to find a cure, or even if you are a researcher working hard to find a cure. It seems to mostly be the epidemiologists who’re doing the patronising head shaking – but several of the most vocal (and therefore influential) seem to have taken the opinion that we bring it on ourselves - and that's shaped the efforts of the entire scientific community, meaning millions of dollars have been spent on studies looking at why people like tanning, or following the sun protective habits of huge cohorts of people, without any evidence, at all, that any of the measures being researched will actually make a difference.

We can’t afford to wait for science to figure out exactly what proportion of melanoma is genetic and environmental. We can’t afford to wait for science to figure out what exact pattern of sun exposure causes this cancer. At this rate, it’ll be decades away, if we ever figure it out, and tens of thousands will lose their lives, while hundreds of thousands will have received that scary diagnosis. We have to make science, by hook or crook, turn its attention to prevention – true prevention – so we can put an end to melanoma, once and for all.

How do we do that? Well, I’ve done a fair amount of reading on the subject over the past few weeks, and I think I’ve seen a way. Just so you don’t think this is just the rantings of some crazy guy off the internet, I’ve also been speaking to immunologists, who say I’m spot on, and share my frustrations with the overly conservative – and seemingly set to fail - path research is taking. These scientists want the change as much as we do. But the powers that be, won’t fund “risky, unproven” research – despite knowing full well that it’s the risky, unproven research that’s most likely to give us the results we need. So here’s the plan:

I’m sure everyone on this forum’s heard about the vaccines against melanoma. These currently work slightly differently to the sort of vaccines you have against TB, or measles, as they’re designed to try and cure the cancer in someone who's already got it, while the TB vaccine’s intended to prevent people from ever getting TB in the first place. By encouraging the immune system to target antigens that melanoma cells display – small proteins that effectively work like flags, telling your body if a cell's friend or foe - these vaccines hope to encourage your immune system to reject the cancer, and flush it from your system – the big advantage of a vaccine being that, much like an elephant, it never forgets, and you should have some sort of lifelong protection against any future melanomas.

The only problem is, the results of clinical trials up until now, have been somewhat disappointing. While some people have experienced great results from the vaccines (and I’m sure we have a few on this forum), in current clinical trials, vaccines have almost been set up to fail. If there’s one thing history’s taught us, it’s that vaccines are rarely, if ever, effective in the face of established disease. A vaccine against TB would barely scratch the surface if you gave it to someone who already had the disease in full swing – the same goes for almost everything it’s currently possible to vaccinate against, with very few exceptions. Had those vaccines been tested as cancer vaccines are now, we’d likely still be plagued by polio, diphtheria, typhoid, and smallpox, as the vaccines simply wouldn't have coped in the face of established disease. And as the current melanoma vaccines are being tested on people with Stage IV cancer, they appear to have an even bigger uphill struggle. In this situation, the person has usually been through chemotherapy (which weakens your immune system), and in the case of clinical trials, often have a large number of tumours that are churning out immune suppressants, all of which conspire against the vaccine. That's not to say the current approach is impossible - and I certainly hope it's eventually figured out - but Stage IV disease, with a compromised immune system isn't the best of places to test a vaccine, as there are so many things working against it. That melanoma vaccines have actually had a limited amount of a success is a testament to how powerful the technology and idea is – but we need to have a paradigm shift. We need to move vaccines from a late stage therapy, to a first line strategy that’ll stop the cancer ever developing in the first place. We need to move a clinical trial to immunise against melanoma before it even happens.

Over the past few years, a veritable quantum leap’s happened in the world of science. We’ve got to the point now where we can look at someone, and be able to tell fairly accurately how likely they are to get cancer. After that? Well, seemingly the scientists haven’t thought that far ahead, as a fair proportion (although not all) seem to be of the impression that being able to tell someone they’re at high risk of an incurable cancer, and there’s nothing they can do about it, is always, without fail, “a good thing”. Your only hope is to catch it early enough – and that relies on your cancer being a slower growing, less aggressive one. “Go out and live your life – try not to worry”. Fat chance, eh?

This isn’t good enough. Creating this mass ecosystem of anxiety, where everyone’s “at risk”, for the duration of their lives, without any way of mitigating that risk, is not on. This is where the paradigm shift comes in. Rather than trialling vaccines in a situation where eveyrthing's working against them, we need to start trialing them in a situation where the stars have all aligned in their favour. Rather than trying to cure a cancer, we need to try and stop a cancer (or a recurrence) happening in the first place. What we need to do is move vaccines into a preventative, or prophylactic setting, rather than as a treatment – and then we’ll really see what they can do.

There’s no reason why this wouldn’t work. In an established tumour, you're faced with a heterogeneous mass, made out of several populations of cells, possibly even dozens, all of which may be displaying different types of antigens. While your vaccine may train your immune system to take out one set of cells displaying that antigen, it may leave others that aren't, letting the cancer carry on growing. In the prophylactic setting, there is no heterogeneous tumour to target. There’s no variation, no immune suppression, no edited tumour. In a healthy person, all your immune system would have to do is find that tiny cell, or cluster of cells, and wipe it out before it can even gain a foothold.

This is a plausible future. Imagine a future where our children, and our children’s children wouldn’t have to be followed by a dermatologist for the rest of their lives. Where they wouldn’t have to go through countless biopsies, scares, anxiety, and possibly even cancer treatment themselves. Imagine a world where “wide local excision” can disappear from our lexicon forever.

This is possible. The science *is* there. Even five years ago, if I’d have said you could use a vaccine to stop you ever getting a cancer in the first place, you’d have looked at me like I was crazy, but this isn’t science fiction. This is happening now.

The place where research like this is gaining the most traction, as ever, is breast cancer, as it’s the most fully funded. The National Breast Cancer Coalition in the US has announced the Breast Cancer 2020 Deadline to develop a preventative breast cancer vaccine. If this is a success (and by God, I hope it will be), this could, and should open the research floodgates. Even if it doesn’t, their structured, by the numbers approach should tell us so much more about immunology, and how the immune system responds to cancer, along with the sort of antigens we should be targeting that it should push the field forward at an astounding rate. In Pennsylvania, Dr. Czerniecki has achieved stunning results against DCIS – an early, non-invasive form of breast cancer that’s analogous to melanoma in situ http://www.uphs.upenn.edu/news/News_Releases/2012/01/cancer-tumors/. After being injected with his vaccine – arguably a more complex version than I’d like to see, as it involves taking your own blood cells, modifying them, and injecting them back in, although apparently he does intend on simplifying it – 18% of people were left with no evidence of disease through the vaccine alone, while over 50% had no evidence of the target antigen remaining, along with a large reduction in the size of their cancer. And this was in people who effectively already had cancer, with a vaccine targeting a single antigen. Perhaps when combined with numerous antigens, it’ll be more effective. There was also the highly publicised work of Dr. Tuohy (http://www.lerner.ccf.org/news/2010/5/4.php), who created a vaccine that was 100% effective in preventing breast cancer in mice. He’s now looking for funding for human trials. Perhaps he’s been interested in working with us on a vaccine for melanoma.

Regarding melanoma specifically, preventative vaccines have been successful in mice numerous times, and there are countless vaccines in various stages of trials in a therapeutic setting . We know of several antigens that are displayed only (or overexpressed, or displayed differently) by melanoma cells, and shared across the majority of melanomas. There’s also recently been a very interesting case described here - http://www.ncbi.nlm.nih.gov/pubmed/22110189. In laymen’s terms, this is a man who suffered from a melanoma, and during follow up, his body spontaneously developed an immune response against his melanocytes – which are the cells that make up moles. Over a period of weeks to months, his body attacked and destroyed the majority of his moles, without causing an auto-immune reaction like vitiligo. You’d imagine that something like this would also protect against melanoma. This is an essential proof of concept that something like this really can work – without dangerous auto-immune responses. If we take the antigens his immune system was targeting, perhaps we’ll have our preventative vaccine?

So, I hope you’re reading this now, excited about the science, and what the future may hold. But how do we make something like this happen? I wish I had a website I could point you towards to offer your help and support, but I’m afraid I don’t. For us to manage to create a vaccine that works in a preventative setting will take a lot of organisation, time on our part, and, of course, money. To try and get everyone working on the same page, I’m intending to post this on several melanoma forums, as there doesn’t seem to be an easy way to get my idea in front of everyone. Please, feel free to do the same if you also visit a melanoma forum I haven't yet posted this on. The more people who read this, the better. I’ve also e-mailed charities directly. First, I e-mailed Cancer Research UK, and sadly received an e-mail back that was confusing at best. Their Chief Clinician told me they were interested in making a vaccine for preventing a recurrence of a cancer once it’s developed and been removed (no mention of melanoma specifically) – yet Cancer Research UK currently have no projects, to my knowledge, that are even along this sort of line. All their vaccines, as far as I can tell, are still being tested in phase IV patients - not to prevent recurrences, and not to prevent it happening in the first place, where they’re most likely to succeed. And I have no idea why. As the public pay their bills, their salaries, we should have a large say in where our money goes. I’ve also emailed both the Melanoma Research Alliance, and the Melanoma Research Foundation about this (over a month ago now), but sadly, and somewhat surprisingly, I’ve received no response. I would have thought that organising, and sourcing funding for a groundbreaking project like this would be each charity’s top priority, as it could help so many people – both at risk of a first primary, and at risk of a recurrence. I’m more than a little bit disappointed that I’ve received no response from the very people who should take this most seriously. Hopefully with a bit of help from you guys, if you agree this is a good way for things to go, we can get things moving. Perhaps you guys and guyettes would like to send e-mails to the charities I've listed above, to show the demand's more than just me?

The biggest problem I can see is that there are no organisations for melanoma like the National Breast Cancer Coalition, or Komen. There’s no one big organisation with the funds to make this happen - but there are loads of smaller ones, each doing an amazing job of raising funds, but without the financial clout to be able to fund anything like this. What I’d ideally like to see is a coalition. A coming together of the charities. We’re all working towards the same goal – each and every one of us on this forum would first and foremost love to see melanoma become a thing of the past – and the most effective way to get there is if we all work together – across countries, continents, and the world. We could then, as one organisation, approach researchers with a view to finding the most cost effective, and quickest route to creating a vaccine that’s safe, efficient, and most importantly, can quickly be approved. The publicity we could raise from taking such a radical approach, a coming together of the charities, with a goal towards funding a groundbreaking preventative measure, should go a long way to helping us raise the funds. Unfortunately, this won’t be cheap. A trial, to show efficacy and safety, would cost in the region of $2m. This seems like a lot, but it’s not a figure that’s undoable. The large organisations, like Cancer Research UK, and the US NIH have already proven they aren’t willing to fund a project like this. It’s too risky for them. If we want this to happen, it’s down to us to make it happen. If we push hard enough, if we pester the public, charities, organisations, Governments for funding, we *can* do this. Australia has a very public problem with Melanoma. As do the Nordic countries, and the US. This is costing them hundreds of millions every year in treatment alone, not to mention lost productivity. It could be the best investment they’ve ever made. And we can open their eyes to that. Never underestimate what a group of people, driven by the same goal, can achieve. We can do this, if we work together.

In summary, raising awareness of a disease we still have no idea how to prevent can only get us so far. Few of the current research efforts are going far enough. We need to do better. We can do better. We need to test vaccines where they stand the best chance of working. For the sake of our children, we need to come together, stand up as one, and make the world listen, to make melanoma a thing of the past. We need a preventative measure to stop melanoma developing in the first place. And this is how we can do it. 

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paylly's picture
Replies 5
Last reply 4/14/2012 - 4:17pm

My mom has had melanoma, since 1994, possible as early as 1965.  She has had 18 tumors/spots and subsequent excisions.  All have been on her forehead with the  exception of one on her neck.  The melanoma cancer cells, in her case, while malignant, act benign.  She has had MRI's and bloodwork for confirmation.  However, this time her doctor, a cosmetic surgeon, has gone several rounds and has not got the complete borders on two spots, one on her forehead, the other on her left temple.  She has had multiple excisions many times to get all the cancer cells, but this time the doctor seems to be a little more frustrated. 

The pathology report indicated as follows:

forehead excision: Residual malignant melanoma involving peripheral deep 3 to 6 o'clock and 6 to 9 o'clock margins

left temple excision: Positive for residual malignant melanoma focally extends into the deep peripheral 3 to 6 o'clock margin. 

First, I was wondering if the best course of action was further excisions, which are painful on a woman in her 80s.  I had hoped Mohs surgery would be an option but now understand that does not work well for melanomas.  What about radiation therapy?

Second, would a second opinion and fresh set of eyes be a good idea at this point? And if so, would that necessarily be another cosmetic surgeon, or a dermatologist?

 

Any guidance would be appreciated.  Shes been through this many, many times, and Im just looking for some thoughts to bring to her primary doctor whom my mom keeps in the loop on all this.  thank you,

 

Paul

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Jeff's Mom's picture
Replies 4
Last reply 4/14/2012 - 3:49am
Replies by: LynnLuc, Jeff's Mom, Linny, Anonymous

A big thanks to boot2aboot for the information about PALS Service.  We called on Friday and Amanda got the vouchers to my son and his wife on Monday - they left for Moffitt (and Dr. Weber) yesterday.   You were right - Amanda was fantastic.  If it weren't you (and this forum), we never would have known about the good people at PALS Service and Southwest.  Cannot thank you enough.  Jeff and Melissa got in to see the good doctor today.  We are so grateful.

Thanks again,

Bridgette (Jeff's Mom)

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bikerwife's picture
Replies 5
Last reply 4/12/2012 - 1:47am

scans showed today that some sharnk some grew and some new ones. Dr doesn't want to wait. For next scan wants to start zelboraf. Also going to do 5 radiation treatments on tumor under arm. I'm confused he said this scan would show growth before we had it. Says he's afraid if he waits ippi might not work but even though we doing zelboraf ippi might still work.
Feeling pretty bad at this point. Does any one know anything about zelboraf?

I'm still prayi

ng for God to open doors.

What God leads u to he will. Lead you through

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justlittleoleme's picture
Replies 9
Last reply 4/12/2012 - 1:41am

Mondays scans showed more progression. One spot on lung, right rib, spots on pelvis and spine grew.
He is in the hospital still trying to get his liver back to normal. May be adding cellcept to the mix and start weaning the steroid. He is now on insulin to get the sugar under control from the steroids. Need to get on with the fight! Temodar is next up!

We don't know how strong we are until being strong is the only choice we have.

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Bonnets's picture
Replies 22
Last reply 4/28/2012 - 12:35pm

My husband went to the dermatologist in Oct. 2112 to have his "spots" checked. I had been concerned about one on his cheek for at least a year. Nothing was recommended at that time, (Oct). I had him return last month, at which time a biopsy was done. The results are: Malignant melanoma, spreading type, Breslow thickness at least !.MM, Clark Level IV, 3 mitoses, ulceration present, lymphoid infiltrate, present, non-brisk. Lesion extends to deep margin and a lateral margin of specimen.Ulceration is present.

He is schedualed to have the lesion removed on  the 20th, preceeded by a sentinal node biopsy, and with a possible neck node dissection.

Needless to say I am alternating between crying and being angry at the DR. who did nothing in Oct, and am wondering, if the nodes are envolved, what chance for treatment is presented. Also wondering if the partial excision for the biopsy will spread the cancer.

Hubby had a triple bi-pass 6 weeks ago,, and now this too. Went thru 6 years of chemo etc with my daughter who passed away of Breast Ca at the age of 33!

Any input is appreciated.

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I was diagnosed with melanoma almost 2 years ago. It started with mole on back of my head, then spread to lymph nodes in left axilla. In January this year PET/CT scans showed 4 new spots on liver. I'm BRAF negative so Zelboraf was out of question. I started IL2 (HD) at MD Anderson and after 2 cycles found out that tumors keep growing (5cm vs 2.5cm in just 5 weeks). My doctor is now suggesting to go with combo of Cisplatin, Vinblastine, Dacarbazine, Interleukin, Interferon. Ipi is not recommended at this point due to fast progression of disease. Does anyone have experience with this treatment? Any advice?

Vladimir

LIVESTRONG!

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Anonymous's picture
Anonymous
Replies 45
Last reply 7/8/2016 - 11:37am

Has anyone else here been diagnosed mucosal?

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24hourmom's picture
Replies 10
Last reply 4/11/2012 - 12:27pm

 I had to create a new login (24hourmom)--I wrote an original post as 24hourmommy. No matter how I tried, I couldn't login under the old name. I realize my post is very long, I'm sorry. I log on a lot and read for support, but today I need to post. I just don't know where we are headed with all of this and the doctors have been very vague.

After I posted last May, my husband's 3rd Yervoy treatment was cancelled due to the diarrhea and he  was put in the hospital for the entire month of July.

We were told in early July that scans showed shrinkage from the 2 Yervoy treatments  but then August scans told us the melanoma was growing again. He went through all of that suffering for almost two months and if he'd had the 3rd Yervoy treatment, I think it would have been deadly.

In August,  I took him to Columbia, SC to get into a Zelboraf trial and he was accepted. Then Zelboraf was approved early and he was removed from the trial. He started Zelboraf as a prescription in September.

He has been on Zelboraf since Sept. and his Nov scans showed us "considerable shrinkage in all areas of concern", his spleen, lymph nodes and lung and liver all responded. His doctors were thrilled and he was uplifted.

We went for his routine three month scans 3/16/12 and were told there is new activity in his liver and his brain. He had to stop his Zelboraf to start radiation, due to doctor's concerns about skin problems.

We started Whole Brain Radiation (14 treatments). He has one lesion (2cm) on his cerebellum, we're told he'll need pinpoint radiation later  for that and many small spots that they hope the WBR will help.

The radiation oncologist did not want him to start a steroid initially because he wasn't having headaches and said the steriod can damage his liver (which is already a problem) but we had to start the steroid last week. The headaches started and he was vomiting. Now, on the steroid, the headaches are under control.

The nurse intially told him not to drive. Then the doctor told him he could drive at his discretion but said "not to quote him on it and don't go on the interstate". I'm  confused because I don't think he should be driving as one doctor told us he could have a seizure at any time.

He will recieve his last WBT tomorrow and can restart Zelboraf  next week. We won't go see the doctor again until May or have scans for at least 6 weeks. I guess now is just the time to wait and see.

He is exhausted all the time and I am getting mentally worn out.

I feel horrible just writing this because I know it must be harder on him than it is on me but the focus is continually on him and this disease. The efforts I make toward normalcy are met with resentment and then I feel guilty. I am so sad for my kids this week because it is Spring Break and they need a break from all of this.

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melmar's picture
Replies 6
Last reply 4/11/2012 - 10:36am

Just wanted to report that I just had my first 12 week scan since starting Merck's anti pd-1, and I am thankful to report that it appears to be working! Spot in lung shrinking. Spot on back shrinking. Most importantly no new spots in brain or elsewhere! Will keep posting future results as I know many are following this study. Thinking of the rest of you out there and hoping for additional success stories.

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OB Mike's picture
Replies 3
Last reply 4/26/2012 - 9:19pm

I am finishing my 4th dose of ipi soon and my abdominal tumor is still growing causing me shortness of breath and weight loss. Does anyone have information for my onc about raditaion therapy?

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H555's picture
Replies 3
Last reply 4/10/2012 - 2:25pm

I just took my first dose of 4 pills, with much gratitude and hope about an hour ago. any tips from those of you who've taken this med in terms of foods to avoid, supplements that you think help hold off the possible resistance, things that seem to work for you? I understand the hugely increased sensitivity to sun exposure and will take care, taking them with a full glass of water, and then have meds left from the side effects caused by Interferon for nausea etc. i take Celebrex already for arthritis and BP meds.  my earlier posts and now my profile describe my mets, prior treatments and how i got to stage IV. thank you. Ron

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Mitt's picture
Replies 4
Last reply 4/10/2012 - 9:46am
Replies by: Janner, Webbie73, Mitt

Hello,

    We just learned today of the diagnosis.  All we were told is that it is 0.6mm witha Clarks staging of II.  We have an appt with a general surgeon next Mon. for excision of the remaining tumor.  Does anyone know if waiting a week is too long or should we get into someone sooner?  Also, should we be going to a more specialized surgeon?  Thanks so much - Mitt

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Karin L's picture
Replies 6
Last reply 4/11/2012 - 4:26pm

Today is 2 days shy from 1yr. ago beginning 2 courses of HD IL2.  I had a PET/CT and the results were amazing.  No signs of disease in the lymph nodes, liver or bones.  One area did light up however, and that is the L5 area in the spine (I did have disease there previous).  Getting a lower spine MRI to determine exactly what is going on and we will go from there.  I have had some severe neuropothy in both hands and feet (to the point I could feel nothing up to my knees) and other parts of the body were pins and needle feeling also (lips, teeth, etc.) and the neurologist thought the pain in my right leg was from a pinched nerve.  After completing Solu-Medrol and tapered off Prednisone the neuropothy is under control except for the right leg area still having numbness.  This is all connected somehow so we will get it figured out! 

I almost made it into the 6% club!!!  I choose to believe I just might get there yet : ).  As bad as it was within the liver and the bones...this is crazy good news!  Gone, all gone but this one area.

 

Karin

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