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Melanoma - My Battle Rages On

GinSue's picture
GinSue
Posts: 19
Joined: Jun 2009

MELANOMA – Do You REALLY Know What It Is??

Melanoma. If you have even heard the word before, the first thing you probably think of is skin cancer. No big deal right? WRONG!!! It doesn't take Melanoma long to become deadly. It is one of the most aggressive cancers there is. There is NO CURE. The only sure treatment is surgical removal. If you catch it early, your chance of survival is very good. Even then, the odds are that it will return later. However, you should know what to look for because if you don't, you won't catch it early. That's what happened to me.
If you have any moles on you that have recently appeared that you haven't had since birth or existing moles that have changed in any way, please have them examined by a dermatologist. Sometimes (more often than you would think) even the dermatologist gets it wrong. I have met a few people since my diagnosis that tell me their dermatologist told them it was nothing to worry about only to find out a year or two later that they are Stage III or Stage IV. They had developed respiratory infections and X-Rays revealed "spots" on their lungs or other parts of their body. My advice to you is to have anything suspicious biopsied - YOU have to insist on it!!
My mole had been on top of my foot about 2-3 years, I really don't know for sure. It appeared as a tiny brown spot after I had started going to a tanning bed. I first started using a tanning bed in 1999. The mole started changing in July 2007. It started to rise on one side and turned blackish blue. I could see day by day how it continued to raise across the top of the mole and it was painful to touch. I went to a dermatologist in Kinston who didn't seem to be very concerned so, unsatisfied, I went to Clinton. I didn't get an appointment until late August and the changes were more intense by then. I didn't know to tell them the symptoms of the mole. If I had perhaps I could have gotten in earlier. The dermatologist immediately biopsied the mole and the next week I got the diagnosis - Melanoma. His office had already made an appointment for me at UNC - Chapel Hill Cancer Center where I later learned I was Stage IIIC. WHAT??
So began my research - I learned that the 5 year survival rate for my diagnosis was very poor. So far I have had 4 surgeries (3 of which were within the first month of diagnosis and one required a skin graft), one month of Interferon Alpha, an Isolated Limb Infusion and 9 months of Interleukin-2 (IL-2) treatments. The cancer has kept coming back. After the Interferon from December 07 - January 08, it returned as in-transit disease on my upper right thigh around the scar and surrounding areas. Thus, the Isolated Limb Infusion in May 08 which has to be the most painful thing I have ever been through in my life. Interleukin-2 began in July 08 and I finished in February 09. IL-2 is the most gruesome of the therapies I have had. I responded very well to the ILI and the IL-2. In December 08 it appeared that I had a complete response and the Melanoma was being held at bay - there was no evidence of disease. Until June 09.
It had recurred in lymph nodes under my right arm. I had surgery in July to remove the nodes but from July to August, I noticed a little in-transit "lesion" around the scar. We discussed surgery but wanted to wait to see what the upcoming PET/CT scans showed. Our worst fears were confirmed - Melanoma had spread to other lymph nodes throughout my body. God has blessed me by sparing my major organs and my brain MRI was clear.
That brings us to today. The only "treatment" options I have are research studies better known as clinical trials. I am praying that all goes well for me to be a part of the B-RAF study in Texas. B-RAF is the particular mutation of the Melanoma I have and 50% of Melanoma patients have this mutation.
MELANOMA IS NOT JUST SKIN CANCER!
So please, always use the appropriate level of sunscreen when outdoors or at the beach and reapply often. If you are considering climbing into a tanning bed, just do a little research on the statistics first. Google skin cancer. Google Melanoma. Look at the images. Re-read my story. Then ask yourself - "Is a tan worth risking my life?" I'll be fighting every day the rest of my life to save mine. Maybe I can help you save yours.

Ginger Lewis Ellis
October 23, 2009

beacon
Posts: 82
Joined: Apr 2009

hey ginger

sorry to read your ongoing story with melanoma.
i was just wondering if you have heard about dr stephen cantrell, and his program for people with different type of cancers?

read lisas thread here http://csn.cancer.org/node/178533 and a few others about him on the colorectal form.

here is part of lisas post about him, cut and pasted, that you may want to look into....

"I know this has been talked about by a few others on this board before, most recently by Buzzard on another thread...(Thanks Buzz for the link and info). I am really excited after reading all the info on the website about Dr. Stephen Cantrell's lovastatin and interferon treatments. He is a doctor who was diagnosed with melanoma. He said his doctors were doing all the right things and it just got to the point where tumors were popping up everywhere & he was told he probably had about 6 weeks to live. He started experimenting on himself with a combination of lovastatin and interferon & noticed improvements within 4 weeks. That was 9 years ago & he now has no sign of cancer.
He now has a clinic Neoplas Innovations in Brentwood, TN (south end of Nashville). This treatment has its patent pending and is considered an "off market" treatment. The website tells all about it and they are having a very good response by many patients. They do say it's not for everyone and they've not had a clinical study. They get no funding help, so do not have the money at this time to conduct a formal study, but several people apparently have had marked improvement and some are totally cancer free now when they were basically given no hope or were failing after other treatments. I know many "alternative treatment" advocates have made this claim, but this one really seems legit to me- you'll have to check it out for yourselves. I'm planning on asking my oncologist about it soon, as well, and see if he's heard of it or of Dr. Cantrell.
Dr. Cantrell is now treating patients who are stage III and stage IV who are basically failing the standard approved treatments or who are not seeing a cure in their treatments.
I just checked out the website and printed all the info, as well as I watched the recent Youtube video clip of him being interviewed on Fox & Friends. After having two recurrences, one after finishing Folfox by just 5 months, and the other while on a maintenance regimen of Xeloda and Avastin, I'm definitely interested in this. I just found out yesterday that my CEA has gone up 8 points in three weeks & this is while on Folfiri. I'm a bit nervous about that as CEA has always been a good indicator for me & every time it's gone up in the past it's been due to a rise in cancer activity. I'm getting it checked again Wed. when I go in for chemo & will have another CT/PET scan in 5 more weeks.

Check out Dr. Stephen Cantrell and his clinic info. for yourself-
The Youtube video is titled "Dr. Stephen Cantrell on Fox & Friends"
The website for the Neoplas Innovations clinic is: www.neoplas.org

Lisa"

hope there is something interesting for you to look into?

GinSue's picture
GinSue
Posts: 19
Joined: Jun 2009

hey Lisa - thanks for the info. Shortly after posting this, I was referred to Texas Oncology in Dallas and was screened and approved for participation in a clinical trial. I started the trial drug Novemeber 19, 2009 and have had amazing results. Tumor shrinkage in the first 2 months averaged 26% and there has not been any new disease. All of the in-transit tumors have shown some regression as well. At this point I am stable which is a tremendous blessing. The only drawback is that I have to fly from NC to Texas every 3 weeks right now and that will change to every 6 weeks in June. I think great strides are being made to find a cure for melanoma and I pray daily that the day will be soon. I have a mutation of melanoma called BRAF and the drug I am taking is targeted for that mutation only. Apparently 50 % of melanoma patients have this mutation. The trial I am on is closed now as all spots have been filled. Phase III is about to start but it is a double blind study. So, I am hanging in there! Take care!

Kisma
Posts: 41
Joined: Dec 2009

I just read your post and want to thank you for sharing. I too am a survivor of melanoma. My cases were not as serious as yours as I was lucky enough to catch them in the early stage.

I wish you the best in your trial and hope that you don't have to deal with this much longer. If you ever want to chat, please feel free to alert me.

I am curious if you are aware of the Skin Cancer Foundations fight about the tanning bed industry? If not check it out, you might it interesting.

again, thank you for sharing.

mchiu12
Posts: 5
Joined: Feb 2010

Could you tell me what is mutation of melanoma called BRAF, is it something related to female hormone because I do not repsond to traditional DTIC and I want to know what other chemo drugs can be tried. What chemo drug you take ?

GinSue's picture
GinSue
Posts: 19
Joined: Jun 2009

I only know that 50% of melanoma patients have the specific mutation called BRAF. If anyone has this mutation, they can be candidates for trials that are having a great response rate. Ask your Oncology team to test you for the mutation if you are interested. The trials that are targeted to the BRAF mutation are not effective unless you are BRAF positive. I have had the following treatments (other than surgery): Interferron Alpha, Isolated Limb Infusion (for treatment of in-transit disease on my right thigh) and IL-2. I was "cancer free" for 6 months until recurrence in lymph nodes in June 2009. I had surgery to remove the lymph nodes and developed in-transit disease again. At this point, we began searching clinical trials and I was referred to Texas to test for the Plexxikon trial and was approved. I have been on that trial since November and have had a 26% shrinkage in my tumors overall and the in-transit disease has been held at bay. I am not cancer free yet but there has been no NEW disease to appear since I began the trial. Hope this answers some of your questions.

jsesch
Posts: 5
Joined: Jul 2009

Have you checked out the Melanoma.org website. Lots of great info there including their bulletin board

daca1964
Posts: 6
Joined: Apr 2010

Hi,

I have melanoma too. I've had two surgeries and am on Inter feron for the next year which I started treatment in November and I'm half way through. I feel you pain and I also got it from tanning beds. I hope all is well with you? Please let me know.

Deb

GinSue's picture
GinSue
Posts: 19
Joined: Jun 2009

Hey Deb! Yes, I am doing well, thank you for asking. I also hope that you are handling your treatments well, I know it is tough but hang in there!

I am on a Phase II clinical trial and am progressing very well! Please keep in touch to let me know how you are doing.

God bless you and keep a good attitude. I will be praying for you!!

Ginger

JR1949
Posts: 230
Joined: Jun 2009

Hi, Ginger, glad to hear you are progressing well with clinical trial. My wife had stage 4 metatastic melanoma. She started August 09 with interleuken 2 (IL2), had four weekly treatments ending November, CT, PET sans March 5, 2010 and now cancer free, all three tumors gone. The IL2 was really rough on her, but she kept a positive attitude and we prayed and had friends and family praying. God bless you and keep a positive attitude.
I will be praying for you.

JR

ValMtl
Posts: 1
Joined: May 2010

Hi GinSue,
I've now developed in-transits on my leg and am waiting for results of my cat and pet scans. I am registered for the b-raf trial = it's a 50/50 with the other option being dacarbazine, hopefully I will test positive for the mutation and get into the RO518542 arm. Your updates on your clinical trial are greatly appreciated, and give me comfort. ValMtl

katd1954's picture
katd1954
Posts: 6
Joined: May 2010

This should have been my fourth year cancer free. Four years ago I was watching a mole change on the center of my chest. Went to dermatologist who did a biopsy and he confirmed Melanoma. Surgeon did a wider incision and it came back with clear margins. At that time he also did a lymph node dissection on my left and right side under arm pits. No cancer!
Since they thought they got it all no treatments were done.
During an annual mammogram a lump showed up in breast. Ultrasound done and confirmed a 4mm lump and dotors said lets just watch it for four months.
Two months later a visible brick sized spot came up, sore, red I called my doctor again. Went in for another ultrasound. Lump had grown 2 mm in two months time. Made appointment with Surgeon for the following week but in the mean time brick sized spot just dissappeared. When I went to the appointment with Surgeon he was not concerned about that spot but a very small spot had just come up and he wanted to biopsy that. I was not even thinking it was melanome. It looked nothing like my 1st spot four years ago. My cancer had returned, Melanoma.
I know that brick sized lump had to be a sign from God to get me back in the Doctors Office before I was scheduled. Pet/Ct scan showed a hot spot under my left arm pit.
Went in for surgery and had a wider incision on breast and it had clear margins. BUT a lymph node on left side did have Melanoma. Surgeon stripped the rest of the lymph nodes on left side and no other had cancer.
A trip to the Oncologist has now determined that I need chemo. I have had trouble with getting IV in so they have installed a port.
Chemo starts Monday, every day except weekends for a whole month. They will be giving me Interferon Alfa.
Then they are talking about injections 3x a week for no telling how long.
ANY ADVICE, SUGGESTIONS, TIPS would be greatly appreciated.
Anybody else had this treatment?
What can I expect?
I would like some feedback.
Being tan is not worth the possiblities of getting this type of cancer.
This is SERIOUS, wear sun block, stay out of the sun and most definitely stay out of tanning beds!!!!!!!
My life is in danger and yours could be too.
MELANOMA IS A KILLER!

ScotsIrishSurvivor's picture
ScotsIrishSurvivor
Posts: 6
Joined: Mar 2010

I was diagnosed with metastasis to multiple lymph nodes, lung and liver after almost 5 years since removal of the first melanoma skin lesion.
The doctors also removed a tumor from my right femur and back. They said that my only option for treatment is IL-2. I'm nervous about the therapy, but hopeful if I am accepted for treatment. The above posts give me a lot to think about.
I've never been one for hours of tanning nor used tanning beds, but did get my fair share of summer sun as a child, working and playing outside. This killer called melanoma starts EARLY. Remember to protect your youngest loved ones!

washoegal
Posts: 45
Joined: May 2010

I hope you are doing well. I have 3C melanoma and also had all my lymph nodes removed under arm. Having some very strange after affects, bumps, an open sore.... I'm wondering if you can describe the in-transit lesion so I'll know what to look for. Did you have the same kind of drainage problem after they took out the drainage tube?

So far I too have to organs compromised and for good or bad the two sentinel nodes that had cancer did not have enough to qualify me for a study group. (?)

Best wishes to you.

medfordoregon's picture
medfordoregon
Posts: 5
Joined: Apr 2013

I wish you the best of luck.  My mole was in the center of my chest also and was told last year not to worry about it when I asked to have it removed.  In Feb 2013 it started changing color grey and grew in size and I had it removed 2 weeks later to find out it had changed to melanoma.  2 more excissions 4mm deep 1month total after seeing the change and  they found more. And also found the sentinel node biopsy found melanoma. 

Waiting on Pet Scan and MRI and a 3rd operation on my chest.

 

If I had read this last year I would have insisted on having my mole removed.  Be persistant.

 

I will be thinking of everyone here.

Best of luck on your treatment.

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