New Stage IV Metastasizing Melanoma Husband

GinSue said:

I did try IL-2
I have gone thru several surgeries and therapies. Here is my list from the beginning:

1) Wide Margin Excision w/skin graft on right foot and Sentinel Lymph Node - Sept 2007
2) Superficial and deep lymph node removal right groin (2 separate surgeries)- Oct 2007
3) Interferon - Dec 2007 thru Jan 2008 (did not do home inj. on Dr. advice)
4) Isolated Limb Infusion due to development of in-transit disease right thigh (considered recurrence) - May 2008
5) Interleukin 2 (IL-2) - June 2008 thru Feb 2009
6) Lymph nodes removed under right arm due to recurrence found in June 2009 - July 2009
7) In-transit disease right breast, new activity with right groin in-transit, multiple internal tumors found on PET (surgery not reommended due to number of tumors and new activity) however, no major organ involvement - Sept 2009
8) Participation in Roche BRAF trial Dallas TX - Nov 2009 to present

I have to say that I believe that my in-transit disease is the culprit in my case. The limb infusion, which was a lethal amount of chemo, could not reach all the tumors which had spread from my groin to my hip and buttocks area. This technique uses a turniquet to isolate the treated area which prevents the chemo from reaching organs. You can google it if you have more questions. I know IL-2 has worked for many people and in my case, it did delay recurrence for about 6 months. If it is an option for anyone, I do encourage this treatment. It is very very rigorous but is doable and worth the effort!

Ginger
ginellis@ec.rr.com

Stage IV Melanoma
I mentioned to the oncologist that I had had a diagnosis of schizophrenia before, and I could not make him understand that I had adequate mental health. He seems to have convinced himself that IL-2 will give me hallucinations, and he would have to take me off again. It's hard for many people to complete anyway, but it seems like the best. It's the only one approved by FDA. I may have to start over with someone else who can administer IL-2, and try to appeal to their common sense. When you aren't psychotic, you aren't "closer" to being psychotic than other people. All this psych trouble dates back forty years, basically from using illegal drugs, and I don't do that. Forty years is a pretty good survival rate, amirite?

This thing started with a swelling in my armpit in March, but it must be metastatic from a skin lesion from five years ago. They missed a cell, it missed the local lymph nodes, it stayed restrained, and then became reactivated, is my theory. I would like to sue Kaiser for malpractice.

My current doctor is Gregory Daniels at the Moores Cancer Center, UCSD. All this is in San Diego. I have been asked if I wanted to drive to UCLA for that PLX4032. My first oncologist is Dr. Robert Barone at Sharp. I can see that these posts are still current to all the same therapies at least.

lkoepplin said:

im not alone in this boat.
I am newly diagnosed 34 year old woman, stage IV metastatic melanoma.

I was first diagnosed with melanoma in Nov 2007. My mole was colorless, .95 mm thick with a Clark level 4. After a wide excision removal w/sentinel node biopsy they did a PET scan and said I was clear. For the first year I went for 3 mo checkups, after that every 6 mos. I AM EXTREMELY VIGILANT and aware of my skin, as I have been getting basal cell/squamous cell carcinoma's since my early 20's.

Last month (FEB 2010) I found numerous nodules in several places of my body, a swollen lymph node as well as a lump in my right breast. These all came about over the span of one week. I got into the doctor immediately. They did a core biopsy of my breast and found melanoma, then verified the nodules (tumors) were also melanoma. After doing my CT/PET scan, I went in for the results of the report. The report stated that I had "hot spots" on both femurs, hip, ribcage, spine, liver and lung. My local doctors got me an appt with UCSF that following week. Last week I saw Dr. Daud and Dr. Algazi (love them both) who went over the actual PET images with my family and I, to see that the report was VERY inaccurate. I have one area in my spine, something on my lung which they think might be a lymph node and multiple nodules/tumors (not ulcerated)on my skin. They tested me for the BRAF gene and I should receive the results next tuesday.

Once I know my results of the BRAF test, we will decide on a plan of attack.

I am scared to death. My husband is scared, but totally my ROCK. We have both lost mothers to cancer (lymphoma and myeloma)and will do whatever it takes. Waiting is hard, so we try to be proactive by doing research. I search high and low for the good news, whilst sifting through the grim.

My heart is with you ALL. I now feel like I have found others in the same boat, on the same road......whatever.

I will be checking/updating this forum frequently. Please feel free to message me for ANYTHING.

Laura

Laura
I know someone meeting with UCSF today and their story is similiar to yours...

Sending Hugs your way!

surface1969 said:

I had melanoma
I have just joined and spent the last few minutes reading through the posts and am curious why none of you have tried Interleukin 2? I was diagnosed with melanoma in 2003 and it eventually with to my spine and lungs. My oncologist immediately sent me to The National Institutes of Health in Bethesda, MD. I began the IL2 treatments and they worked on me... thank GOD!! I'm cancer free today (or NED - no evidence of disease). So, I'm just curious if any of you looked in to this treatment.

Thanks!

melanoma stage IV
Well you are one of the lucky ones, and great to hear!
My brother in law was diagnosed with disease Dec 2009. Did IL-2 treatments, they did not work. Has had 3 rounds of Chemo with carboplatin/Taxol, also did not work. Growing up his spine closer to neck area where nerve endings are, also bad tumor in his hip spread to muscle. receiving radition daily for 2 weeks now to try to alleviate pain. Next step is to meet with a phase 1 trial dr to discuss further options, but won't be able to start a new treatment for probably a month...so frustrating as it is constantly a race against time! But so much waiting and waiting. I pray that something will work and work fast!
He is being treated at Karmanos in Detroit, MI.
Does anyone else know of any more drug options, alternative treatments?

Doctors
My dad was diagnosed with stage IV melanoma on February 4, 2009 and died on January 27, 2010 so he didn't even live a year. The last year was pure hell with radiation, chemo, trial promises, experimental drugs, etc. and if we knew how this would turn out my dad would have refused treatment and enjoyed his last months.

Instead every week he was poked with needles, bruised, used as a guinea pig in the name of science. Lots of experimental (or still new) drugs were tried on him and none worked...didn't even slow it down. We got reports that the tumors were shrinking but apparently we were just getting the good news on certain tumors and not that the cancer had spread to other areas. Lord forbid we know the truth and dad would ruin the experiments by refusing additional treatment.

He ended up getting a resistant staph infection in the very hospital that was treating him and died from "health care related pneumonia" caused by the ventilator that was suppose to save him. Keep in mind that a "research hospital" is just that...they are conducting research and will try different methods to see how the cancer reacts. Not always best for the patient but research comes first.

The whole point of this story is to tell you that you and Cheryl need to take responsibility and control for her care because live or die she is just another patient/number. After dad's death they were already moving on to the next one I'm sure. They didn't care about him just his ability to pay and his medical insurance.

Don't put your faith solely on doctors but yourself (you have already been failed several times so you know this is true). They have many patients...you have ONE patient. I wish you the best and I will pray for you. I am bitter about my dad's death and I know it comes through but if I can help one person then I will repeat this story over and over with tears flowing. My dad deserved better. He was 61 years old.

yes that's how it works...
yes that's how it works...you need to be proactive and I mean ACTIVE! Call F Lee Moffitt. They have some great trials and some do not require you fail a treatment or to have had any treatment at all. They have a Dr...Jeffrey Weber and I believe he and Steven Rosenberg at the NIH/NCI are the best. I am stage 4 melanoma NED( no evidence of disease)...they said last May I had 6- 9 months...I am still here and I have been cancer free for nearly 6 months...not even close to dead! I start immunotherapy trial this friday and I hope it will keep the bugger away! By the way, clinical trials are generally free. I only had to pay for my initial dr visit and my CT/MRI before being accepted into the trial...anything during the trial will be taken care of by the trial...

LynnLuc said:

yes that's how it works...
yes that's how it works...you need to be proactive and I mean ACTIVE! Call F Lee Moffitt. They have some great trials and some do not require you fail a treatment or to have had any treatment at all. They have a Dr...Jeffrey Weber and I believe he and Steven Rosenberg at the NIH/NCI are the best. I am stage 4 melanoma NED( no evidence of disease)...they said last May I had 6- 9 months...I am still here and I have been cancer free for nearly 6 months...not even close to dead! I start immunotherapy trial this friday and I hope it will keep the bugger away! By the way, clinical trials are generally free. I only had to pay for my initial dr visit and my CT/MRI before being accepted into the trial...anything during the trial will be taken care of by the trial...

My husband goes to Moffitt
My husband goes to Moffitt we see Dr.Kuchacar and We love this Hosp everyone is so kind and understanding takes the time to listen to you... My husband is on the IL2 treatment and its a hard regimen but it is working and thats all we can ask for they gave him 6-9months in Sept2010 and we pray that he will live long past that. We know that its not in our hands but Gods...

I do have a questions for anyone he keeps telling me he feels something moving through his body has anyone else had this feeling?

NailBitingHusband said:

Therapy Strategy
I'm so happy to hear that you have having success! And thank you for the suggestions and recommendations. I've heard many positive stories about IL2, and I have it down as one of the 3 different alternatives we are considering:

1. Immunotherapy - initially one's dealing with B-RAF gene mutation
2. IL2
3. Ipilimumab

Since my wife has still not received treatment, our initial targeted strategy is to pursue clinical trials for RO5185426 (formally known as PLX4032). Our most recent plan has again had to be scratched, but we do fly to LA tomorrow (we live in DC) to get tee'd up for treatment. We like this strategy because the side effects are minimal, plus the drug has had a 70% success rate during the clinical trials. The problem with it is that it's "durability" is only about 10 months. I've found the best info on melanoma, aside from this site, to be trade journals. As I understand it, this immunology strategy is based upon success of identifying the mutations that "drive" the cancer's growth. They ultimately want to create a cocktail of these drugs that will "block" several mutations - they believe that once the "driver" is sidelined by one drug, the cancer is smart enough to rotate another driver into place, and once that "driver" gets sidelined, it can rotate to another. By addressing each mutation they think they can eventually kill the cancer.

That said, though, this is going to take years. So if you can keep alive with IL2, IPI, and the other immunology drugs long enough......

Well, that's the theory, anyway. What bothers me is what I perceive to be the "competition" between methodologies and doctors. I keep reminding myself that these doctors are really clinicians, and they primarily see the patient as the "means" to a financial / celebrity status "ends". I keep thinking about the movie "The Fugitive" (Harrison Ford's version), where, at the end of the day, the villian is the good doctor's best pal - another physician who is so motivated by money and status that he would fudge the results of his clinical trial.

Good luck with the IL2, and my very best to your wife!

M

ipilimumab
Hi
Im a 37yrs old from Ireland im now stage IV met mil melanoma. first operation was in 2004 removal of freckle on my shoulder then it came back im my lung which was removed in 2009, back again in adrenal gland and ovary, they were removed in nov 2010 back adain in neck and other ovary in jan 2011, I was on interferon for 9 months before it camce back in gland and ovary, Ive had radiation on my neck because surgery is no longer an option, my proff has given me 6 months to live but is also putting me on ipilmumab stating next tues.. do you have any experince of this drug??

Thanks
Shirley

NailBitingHusband said:

Hang in there!
What options did your doctor give your you guys? Choosing the right doctor and the strategy that makes the most sense for you / your husband is key, and the only way to do any of this is to research this yourself. Melanoma was been a wasteland for so long for doctors - there had been little to no advancement in treatment until only just recently. As a result, chosing melanoma as specialty was a dead-end for doctors. Now there is a lot of excitement in the field because of new discoveries. You've got to be aware, though, that most of these specialist are "clinicians", more research doctors than you're used to. That means that their bedside manner sucks, and they think outloud too much. Don't let that get you down. Another thing - these doctors are commited to specific philosophies. What I mean is that many of these doctors will not likely recommend strategies outside their area of expertise. That's why some doctors and hospitals never have clinical trials on treatments "opposed" to their philosophy (ie: an IL2 doctor likely wouldn't recommend ippi or what I call "genome-oriented" treatments like PLX4032). This is why your own research is absolutely necessary.

It amazes me how uninformed we have all been about melanoma. We're told to watch for moles, moles, moles. And since my wife contracted melanoma (the doctors believe it originated / is a lung primary), I've heard so many stories about it NOT starting on the skin, but on an organ in the body, somewhere on genitalia, in the brain, in the eye and bones. Now you're saying your husband's started on his thumb? Whenever someone hears my wife has melanoma, they ask "where is the mole" and assume it's one of those cancers that's "not a big deal". Doctors and associations associated with melanoma are not, IN MY OPINION, doing a good enough job informing the public about melanoma. Something has to be done!

M

Stage iv melanoma
I agree something needs to be done about getting the message out there! Time is also of the essence when dealing with melanoma. They put tests off for weeks at a time, appointments are put off for weeks at a time. My brother was diagnosed a year ago and the only treatment he has received so far is interferon for 8 months and now radiation, which during this time the cancer spread to his bones, hips, spine, liver, lungs and now his brain. He was suppose to go to MD Anderson on April the 6th but is to weak to travel. I have been positive this whole time and kept the faith, I just want other people to be very diligent about getting help ASAP and hope the doctors dealing with this disease will act a bit quicker with a sense of urgency. They know better then anyone else what this disease can do! I pray your wife does well with all her treatments and wished I had been more diligent about seeking help online.

alternative treatments
Hello,

My brother was just diagnosed with metastasized Melanoma in his left lung. He starts his Il2 treatment on February 6th. I have been doing non-stop research on this since I found out on Sunday. I have come across some very interesting treatment to do at the same time as the Il2.


PectaSol-C to slow down the cancer cells from growing.

Double Helix Water to repair the cells

Protandim for the repair of cells

Has anyone on this site used any of these items?

I am so glad I found this site, Im here if anyone has any questions and I would appreciate any input!

Thank you

AZD-6244 MK-2206

My husband took ZELBORAF for 3-4 months and it worked well, then stopped working. And the disease came back.  He is beginning a trial for AZD-6244 MK-2206.  We are just hoping it works. He has several tumors, however the priority is on shrinking the tumor in the right atrium of his heart. 

This is my first time to the site. I've been curious about what other people think, what other people are experiencing.  

My husband, Bill ,is 34 years old.  He went through a year of interferon (sylatron.). We wish they had scanned during that time because the tumors had reached to the heart and left eye among other areas. If they had scanned, the medical team would have realized that the interferon was not working and do something else. 

Now I am a freak about going to EVERY single scan, appointment, anything he has, I want to be there.  We are at Vanderbilt at least once every 2 weeks, but on this new trial mentioned above, we will be there at least once per week. 

 

Has anyone heard of this treatment?  What is your experience with it?

Thanks

 

MG