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.

Expand/ Collapse Topic
 
Replies By
View Topic
ValinMtl's picture
Replies 24
Last reply 10/3/2011 - 12:48am

Well, went back to NIH with a great deal of trepidation!!  GOOD NEWS!!!  After 3 weeks, there has been 27% reduction based on the nodules studied and their diametres.  Did I get that right?  My doctor will provide me with a written report since at times like this it's difficult to understand.  I can certainly see the improvements.  My doctors tells me overall there is a 62% improvement if you do not focus on only the 'analyzed part'.....anyways I was going to wait until I had a proper written report from the doctors on Monday but I've waited long enough, I was petrified to say anything and now I will sing it to the top of the hills.  More detailed info will follow.

It is sooo nice to see something positive for a change.  To show how little is understood about this program, I had a little bit of a bad turn back in Montreal and ended up in the hospital for one day (halucinations)...one oncologist took my son (my son..NOT me nor my husband!!) aside and asked what were his intentions for his mother since she had only succeeded in 2 of 12 bags of  IL-2 and that is not success (well I've got the famous itch right now!!)...He did not take in to account the millions of good white cells (4.28 milllion) re-injected into my body nor stem cells nor radiation....Go figure.  I told Shaun to ignore his comment.

Dr. Hessman was my fellow and both Dr. Yang and Dr. Phan came by to congratulate me and apparently Dr. Rosenberg is just delighted.  They told me I am healing faster (ouuchh, my whole body aches especially the lymphedema leg still hurt) than many because of my determination and positive attitude....When I was being offered morphine and palliative radiation in Canada, I knew it was time to take things under my own wing. THANK YOU WARREN, your e-mail was such a God send and wonderful timing.  I had a date for palliative radiation in left groin within a day...I stopped it and spoke to NIH first.   IT WAS A DEFINITE DO NOT DO THAT UNTIL you see us.  Thank goodness.  If they had, they would not have been able to remove an area unafffected by radiation.  Hard qualifications all..in all..  BUT got through and was randomized to TBI side of trial same as Warren 5 years ago.

Combination treatment might be the wave of the future.  I had yervoy which I responded to very well but left behind two growths in left groin and other growths...TIL just might have killed the rest of the evil one!  One can pray.

God bless

And in honour (both past and present) of all our dear friends that fought so hard and volunteered for us to reach this new level of treatment for stage IV.   Val

PS  Warren how are you doing? I pray they have come up with a treatment for your Merkel cell carcinoma.  Val

Live Laugh Love Nothing is worth more than this day!

Login or register to post replies.

Beckyinsandiego's picture
Replies 10
Last reply 10/2/2011 - 8:57pm

My original melanoma was back in 1999 and since then I have had 4 recurrences. I am Stage IV and have activity in my sternum. My doctor wants to put me on Ipi and I was hoping to hear from fellow melanoma warriors out there about their experience with Ipi. I would like to hear success stories of course but I know that it does not work for everyone. Please share your story with me if you can. I know I am going to beat this disease like I always do. Keep positive because it is over 1/2 the battle.

Take Care of Yourselves

Becky from San Diego

Login or register to post replies.

djpayn's picture
Replies 6
Last reply 10/2/2011 - 9:18am

Just got my results back and am happy to say that i am now 3 years NED!! and i want to thanks all of my friends for being there for me when i was just starting this journey and all the times since. I really feel i couldnt have made it without all of your support, friendship, and kindness!!

 

Its been a tough year, so many have left us. They will all be missed dearly and remembered fondly.

 

smiles and hugs****

 

dawna

Login or register to post replies.

hi guys, its been 11 years since I was first diagnosed with melanoma. I am still currently Stage iiiib but I am still alive and well even after my third primary melanoma.  I have been doing my best as an ambassador speaking on tv and radio trying to raise awareness of melanoma and helping to raise funds for research to get a cure.  As a long term survivor I hope that for the newbies diagnosed with melanoma that even though this disease can be frightening, there is always hope. dont give up.   

Login or register to post replies.

petie540's picture
Replies 9
Last reply 10/6/2011 - 9:52am

I'm in a clinical trial taking ipi at 10mg.  plus GSM 250 14 out of 21 days. Finished 4th infusion two weeks ago, scan yesterday. Results showed over a 60% reduction in the lung mets, now nothing over 3mm. No spread any where else. My doctor was thrilled saying how unusual it is to show this kind of response on the first scan/mri. It's been quite a roller coaster with good and bad scans, but this feels like it could be really good. Very bad rash from ipi, taking prednisone 10-20mg for months,but of couse I'll take it. My adrenals are enlarged but she is unconcerned saying it reveal the intensity of my immune response. Next scan in December with ipi maintenance also in december.

Login or register to post replies.

nickmac56's picture
Replies 5
Last reply 10/2/2011 - 8:01pm

My wife went in for her second gammaknife treatment to pick off two brain tumors. Her scan was ten days ago. They did the pre-treatment MRI this morning and found three more - all three had emerged during this ten day period. Obviously not a good sign - means the cancer is fast growing up there. She was able to have the gammaknife treatment and they went after all five. They will scan again in 30 days. But likely the next treatment for her head will be whole brain radiation. She's pretty emotionally distraught this evening, even though she came through it fine. No side effects yet, even though one was in the speech center. 

We have the weekend to recover - then she has a golf ball size sub-q tumor on her upper arm removed Monday. Then a week later - maybe start a new chemo. 

This disease is just terrible.

Nick

Her motto: "Don't wait for the storm to pass, love dancing in the rain".

Login or register to post replies.

Ashykay's picture
Replies 2
Last reply 9/30/2011 - 7:58am

Just thought I'd provide an update on Mum...and ask for some feedback in the Yervoy area of things.

A couple of weeks ago, my Mum got the ok to start on chemo and then Yervoy with respect to her tumour/s. The doctor said though that she couldn't start until start of October as their lab was closed for renovations, so they couldn't formulate the vaccine for her. This has been an incredibly frustrating and almost ridiculous process. I think it's bull that we have had to wait 4 weeks to get this done just because they are renovating their lab.

Mum has had her pain coming back...last night she was really bad. She will probably be back on morphine soon too (she was on it when intiially diagnosed, but then when she had radiation, although it didn't shwo any progress with shrinking the tumour, her pain signifciantly reduced). I'm really worried that because of these doctors who play with people's lives, this whole Yervoy thing might have come too late. She hasn't had any scans in about a month or two either...so we don't know whether it's growing or what.

I just wanted some feedback as to whether anyone has been in this pain before they start Yervoy and have found that Yervoy has improved it??

Sorry for my angry comments, but right now I am a really worried and scared daughter...and unfrotunately I don't think I could forgive the medical profession for their "renovations" if this has come too late. Need some reassurance.... :(

Login or register to post replies.

Dynasysman's picture
Replies 10
Last reply 10/2/2011 - 9:34am

Just learned that the scans I took yestereday make me NED.  So one year after I first found the lumpy lymph node (Melanoma of Unknown Primary), seven months after a PET-CT revealed a second tumor in the same space (but my ONC misread it), three months after an ultrasound-biopsy confirmed it, I am NED and one-year progresion free.

Look, melanoma is a sneaky, nasty disease, so you never know what comes next.  But for those of you just entering Stage 3 or first discovering an unknown primary, it's not an immediate death sentence.  And for those of you who "got it early", well, maybe you did!

Never give up. Never give up. Never, never, never, never, never give up. WInston Churchill It ain't over 'til it's over. Yogi Berra My 20th anniversary is only 9+ years away. Personally, I'm thinking champagne & oysters. Now I just have to get there

Login or register to post replies.

jaredmiller16's picture
Replies 9
Last reply 10/3/2011 - 7:58pm

 

Been seeing a derm twice a year for the past five years. Nothing has ever come of it, but my last visit he decided to remove a mole that looked different than it had in the past. Turned out to be Stage 1. He said we caught it early and I have 95% survival rate....But I am not buying. Too many times I have heard of people being diagnosed with Stage 1 and then three, six, or twenty years later they have a reoccurrence. So now, I am stuck in the dead depression funk knowing any day, I am going to be six feet under.

Why does melanoma do this? Especially in comparison to to other cancers? Should the treatment for Stage 1 be changed? Is early detection really the key? Or does it just buy you a few more years? Sorry to sound grim about all this, but so many close to me have died of this evil thing and I think its just about time they found a cure! My mom's doctor said Melanoma is a cancer they're the closest with, but, I'll take that with a grain of salt. Thoughts?

Login or register to post replies.

Terra's picture
Replies 10
Last reply 10/2/2011 - 10:44am
Replies by: Terra, Vermont_Donna, Lisa13

Hi - could anybody who was a late responder to ipi let meknow what your side effects were like i.e. did you get them while on the treatment or not until you were responding?  (I know it is a long shot but just wondering?)

Login or register to post replies.

Anonymous's picture
Replies 8
Last reply 9/30/2011 - 7:55pm
Replies by: JerryfromFauq, LynnLuc, lhaley, jim Breitfeller, Anonymous

Hi,

I am a newbie & trying to understand the RESPONSE difference between IPI & anti-pd1 or anti-pdl-1

If a patient does NOT respond to IPI, why would the patient possiblly respond to anti-pd1 or anti-pdl-1.

I do not understand that if you take the breaks of your immune system with IPI, how is different than taking the breaks off with anti-pd1 or pdl-1?

Why could a patient who was not a responder with IPI, possible get a response by taking anti-pd1/pdl-1 after taking IPI.

Is taking anti-pd1 drug or taking anti-pdl-1 make a difference? Can you get a  better response by picking one over than other?

Thanks for all you great info.

A

Login or register to post replies.

piii's picture
Replies 3
Last reply 9/30/2011 - 2:55pm

I am meeting with the radiologist next Tuesday to decide if I will do radiation on my left arm. I had 41 LNs removed 4 ½ weeks ago and one came back with extranodal extention. I started out at RI hospital with a great surgeon and have decided to move to Dana Farber cancer center as they are one of the best in my area. I have not seen a medical oncologist at RI but my surgeon there does not think the risk is worth the benefits. My oncologist at Dana Farber is on the fence and leaning toward not doing it. She did say she would support my decision.  So I was for doing it but now I am on the fence.

 

Anyone out there that has gone through this? I would appreciate your input.

 

Thanks

Peter 

Login or register to post replies.

Lisa13's picture
Replies 8
Last reply 10/2/2011 - 7:23am

I caught my daughters cold yesterday which happens to be the first cold I've had in a year.  I had my 3rd infusion of Yervoy last Thursday and was wondering if being sick and having a weakened immune system (at the moment) is going to affect this drug.  I know we're all bound to get sick during the cold/flu season, but I hate feeling defenseless right now when all I want is a powerful immune system. 

Lisa - Stage 4 - lung mets

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

Login or register to post replies.

http://www.sciencedaily.com/releases/2011/09/110927072612.htm?utm_source...

 

Earlier studies have shown that many forms of tumour also have a higher expression of the COX-2 enzyme, which is not found in normal tissue but which plays a key part in inflammations and the development of cancer. As regards tumours, it has previously been shown that for unknown reasons COX-2 is induced in tumour cells; a phenomenon often associated with poor prognoses. Further, the knowledge that COX-2 inhibitors reduce the risk of cancer has led to their use in clinical studies for cancer prevention. CMV in turn, greatly and specifically stimulates the synthesis of COX-2 and is thus a possible control signal for tumour growth. COX-2 inhibitors also reduce the production of CMV. The researchers now show in their paper, which is published in the Journal of Clinical Investigation, that tumour growth decreases when CMV is inhibited.

"Our experiments on mice show that tumour growth declines by around 40 per cent when antiviral drugs or COX-2 inhibitors are used separately, and by no less than 72 per cent when used in combination," says Professor Söderberg-Nauclér, adding that this effect is achieved without using chemotherapy.

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

Login or register to post replies.

JerryfromFauq's picture
Replies 4
Last reply 10/1/2011 - 10:47am

http://defeatosteosarcoma.org/2010/07/mistletoe-and-solid-tumors/#commen...

Mistletoe and solid tumors

 

Posted 19 Jul 2010 in General Cancer Research

One of the most obvious differences in the practice of oncology in the United States and in Europe is the differing attitude towards mistletoe (Viscum album). European oncologists have used extracts of mistletoe for the past 90 years and such usage is no longer controversial there. By some estimates, 40 percent of French (Simon 2007) and up to 60 percent of German cancer patients receive this botanical extract (Schönekaes 2003). On the other hand, the use of Iscador and other mistletoe extracts is virtually unknown in the United States. Both Europe and the US have well trained and highly competent oncology communities, yet they differ profoundly on this, as well as a number of other issues concerning cancer treatment. This difference is a vivid illustration of the effects of cultural norms on medical practice (Payer 1998).
Iscador is an extract of the white berries of the mistletoe plant, an unusual evergreen plant that grows as a kind of parasite in trees across Europe. Globular mistletoe is a familiar sight in Germany, especially in the winter when it stands out in the bare branches of various deciduous trees. Mistletoe has a fascinating history. According to Roman authors, mistletoe was used medicinally by Celtic priests, who gathered it using golden scythes (to avoid contaminating the specimens). Much later, Rudolf Steiner (1861-1925), the founder of Anthroposophical Medicine, introduced as a cancer treatment (Steiner 1985).
The key question is whether mistletoe has anticancer effects or not. If it does not, then European doctors should stop using it (or recognize it as a placebo). If it does work, then American oncologists should adopt it as a useful adjunctive therapy. (No one I know regards it as a cure).
Earlier this year, I discussed several positive studies with mistletoe. Since then, several additional studies have added weight to the pro-mistletoe argument. Jessica Burkhart, Stephan Baumgartner, et al. of the University of Bern, Switzerland, investigated the effects of mistletoe on the adverse effects of the drug cyclophosphamide (Cytoxan) in cell line studies. The article appeared in Alternative Therapies in Health and Medicine in May-June 2010. The experiment involved normal white blood cells (peripheral blood mononuclear cells, or PBMCs) as well as a T-cell leukemia Jurkat cell line. Cells were first pre-incubated with mistletoe extract. Then a form of cyclophosphamide was added. After that, mitochondrial activity and replication were both measured.
The results were that mistletoe extract “strongly stimulated” healthy PBMCs but not malignant Jurkat cells. The level of activity of these cells was doubled by the addition of mistletoe (197 percent with the lower dose and 225 percent with the higher dose). In addition, mistletoe partially protected healthy PBMCs, but not malignant cells, from the damage inflicted by cyclophosphamide.
This is further scientific confirmation of the purported uses of mistletoe to reduce the adverse (side) effects of a widely used form of conventional chemotherapy. Mistletoe exerts immune modulating as well as direct anti-proliferative effects. Mistletoe may also increase levels of various anti-cancer cytokines including tumor necrosis factor (TNF-alpha).

This year, at the American Society for Clinical Oncology (ASCO) meeting, Washington DC scientists presented the results of a phase I clinical trial on the use of European mistletoe extracts and the drug gemcitabine (Gemzar) in patients with advanced solid tumors (Mansky 2010).  Gemcitabine and osteosarcoma The product tested was Helixor (not the more common Iscador). These researchers’ conclusions were highly positive. They reported that the combination had limited toxicity, no alteration in gemcitabine uptake, good tolerability and a clinical benefit in 48 percent of patients. (This contrasts well with previously reported levels of benefit from gemcitabine alone.)
They concluded that the addition of European mistletoe extracts “may allow for use of higher doses” of gemcitabine and that the combination of mistletoe and this drug “warrant further study.”
Studies of this sort continue to chip away at the standard American oncologists’ contention that all useful treatments are routinely employed in US oncology hospitals and that any other ways of treating the disease are without scientific validity. This is simply not true. In fact, American oncologists could learn a great deal from CAM practitioners, if they would recognize that other cultures have different ways of approaching the same problems, and that have something valuable to contribute to the optimal treatment of cancer patients

 

 

 

 

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

Login or register to post replies.

Pages