CSN Login
Members Online: 7

New Stage IV Metastasizing Melanoma Husband

NailBitingHusband
Posts: 23
Joined: Jan 2010

I'm confused and angry today at our oncologist and need advice as to what I should do about it.

My wife, Cheryl, was diagnosed with Stage IV Melanoma Cancer on 11/30/2009. It appears to have started in her lung, and matastasized to a lymph node in her lung and then her liver. We live in Virginia. The first consultation with our oncologist at a respected NYC hospital (yeah, that one) was on December 4th. We met him again Dec 7 & 8. He explained the "success rates" of traditional treatment and for one alternative -a Phase III clinical trial he's overseeing that, in his opinion, was a "break-through" melanoma drug with a huge success rate. He recommended we wait for the trail to began just after 1/1/2010. Though it was a long time to wait for treatment, my wife finally said OK.

On December 9th my wife had an appt with an GYN oncologist. A couple of days later her pap smear biopsy came back with evidence of melanoma cells. Cheryl's oncologist was informed, but he wasn't worried - stay on track for the clinical trial.

Cheryl called the oncologist 1/4 about the date of the trial. She was informed that it was now scheduled for 1/12. On 1/7 he informed her the trial was delayed 3 weeks. The oncologist called last night (1/12) and told Cheryl he was no longer sure when the trial would start. He counseled her that there was no treatment he could recommend at the NYC hospital, but did explain that he had spoken to an oncologist at a Tennessee hospital about the Phase II trial for the same drug he was working. He gave Cheryl the TN oncologist's phone number (it was the hospital's general number) and recommended she call and pursue treatment there. We called the TN hospital but were told Cheryl was not eligible because the Phase II trial is for people who have failed a previous treatment.

How can a doctor dump you and leave us twisting in the wind like this? And to top it off, now TN can't take her because she doesn't fit the criteria! We have lost 1 1/2 months with no treatment with these yoyo's, and my wife's cancer does nothing but grow - is this how it works?

rebecca3380
Posts: 2
Joined: Mar 2011

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.

lilang
Posts: 1
Joined: Aug 2010

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.

SRHadden
Posts: 4
Joined: Jan 2010

If you get on the BRAF trial, please insist to the doctor to get brain scans every 3 months or 4 months. My wife was on the BRAF trial for 6 months and while it stabalized the minor disease in her lungs, we did not know it was spreading rapidly in her brain. Now she has advanced disease because we were somewhat in denial that it would go to her brain since it has managed to stay away from her brain for a year.

Also, there are compassionate use ipilimumab trials out there. This drug has a potential for a long durable response. Try this first before you go through hell on IL-2. My wife did IL-2 and it didn't work.

Also, take vitamin D3 (D3 only) in 6000 units per day. Confirm with your doctor. Lots of people are low in vitamin D and research suggests people with normal levels of vitamin D do better with melanoma. Most people are LOW.

Hope this helps someone out there. Contact me at bfleming@uicalumni.org if you want to know more from our experiences of searching for trials.

Never let the doctor tell you what to do! Some are good, some are bad, some don't want you to try any trials outside of their own hospital. It is really sad. The only person who really cares about you is YOU, unless you find a rare doctor.

LynnLuc's picture
LynnLuc
Posts: 24
Joined: Sep 2010

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...

Loving
Posts: 2
Joined: Dec 2010

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?

LynnLuc's picture
LynnLuc
Posts: 24
Joined: Sep 2010

Beginning second 12 week cycle...

Bingo2
Posts: 1
Joined: Dec 2011

A NASCAR driver from Washington DC had the same diagnosis and cured his cancer. His name is jerrod Sesseler. Let me know the outcome of contacting him or contact me and I will send you the DVD of his testimony and thetreatment he used. Don't know who you ate but I will pray for you and your wife!!!!! Good luck

Kelly7
Posts: 4
Joined: Jan 2012

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

Michelle1977
Posts: 1
Joined: Jan 2013

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

NailBitingHusband
Posts: 23
Joined: Jan 2010

I haven't been back to this discussion since my wife was first diagnosed, and frankly I didn't know that anyone was still following or contributing to the discussion string - I wasn't "notified" when additions were added.  I should have looked, but frankly, life's been crazy.

To bring anyone interested up-to-date, my wife, Cheryl is still on PLX4032.  Yeah, that's right -40 months later.  The melanoma seems under control, and I can attribute that to my wife's ferocious immune systemn, a great doctor at UCLA and PLX4032 / Zelboraf.  We went into the trial knowing that it was going to be a temporary "fix", and that it was a bandaid to get us down the road.  Maybe to an IPI trial, or maybe something else that was new.  

We flew back and forth from DC to LA every month for nearly 3 1/2 years, but it was worth it.  Cheryl became an A number 1 lab rat, but that didn't come easy.  The side effects were bruatal - basically 99% of all her skin came off, cysts grew everywhere, she lost her hair and the nausea and diarrhea was daily.  The side effects slowly subsided and now the sores have healed and "most" of the nausea and diarrhea have gone away.  Her hair never has come back fully - it was previously long and straight, but now its short and very curly.  Its easy for me to say this - I think it was damn worth it!

Heading to LA next week for the last day of the clinical trial - she decided she's had enough of the monthly LA trips and is going onto prescription Zelboraf out of Georgetown University Hospital.  

We know that this isn't likely the end of the saga, but we feel much better and knowledgeable than when we started when this thing hit the fan.  The best advice I can offer is to nail down the best stink'in melanoma specialist and hospital for YOU.  Melanoma is not to be left to general oncologists.  It's not a carcinoma - its something completely different.  Getting that specialist can likely save your life.  Some of the doctors you run into will piss you off, but its got to be you and your advocate's job to put your head down and bull your way through.  Yes, a lot of these guys are selfish egomaniacs, but not all of them are.  And the best thing we've got going for us is that we're living in a great age where science is taking advantage of advances in genome sciences and applying that knowledge to targeted and immuno therapies that work.

Best of luck to all of you out there. I wish you the best!

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network