STILL ALIVE by HANK GARDSTEIN M.D.
It occurred to us that many patients might be interested in the unique perspective of a physician diagnosed with stage IV disease.
The patient’s past history included several orthopedic procedures for sports related injuries and chronic benign idiopathic neutropenia previously worked up including bone marrow studies. The family history was non-contributary.The primary lesion was several inches below the collar line on the upper back. Diagnostic biopsy revealed a desmoplastic malignant melanoma of at least Clark’s IV. Following an extensive pre-op work-up that was negative for metastatic disease, a wide excision with sentinal node biopsy was performed. Pathology revealed the lesion to be 5 mm. in depth without node involvement. At this time it was decided to follow up with a wide local field of external beam radition over the course of 5 weeks. High dose interferon was discussed but not chosen. The patient experienced some moderate degree of radiation necrosis, but the incision site eventually healed with the expected scarring. The patient was N.E.D. at 6 month PET scan and assymptomatic, however the one year CT scan revealed a solitary lesion in the right lung. This was shown to be metastatic by needle biopsy.
Another very extensive pre-op evaluation revealed this to be the only site of metastatic disease. The patient had an uneventful lobectomy and did well post-operatively.
Because of the short time between the primary and diagosis of stage IV disease, the patient was advised to evaluate the experimental protocols available at the time. ( 10/02)
Because of my pre-existing neutropenia, it seemed reasonable to me to pursue an immunologicic course of treatment. In addition, the idea of very high dose interferon and likely inability to continue to play tournament tennis was not very appealing. Therefore, I enrolled in the Duke vaccine study while at the same time consulting with Dr. Spitler. Since there was no contraindication to following the GM-CSF protocol while doing the vaccine program, I elected to do them together in order to give myself the best chance possible against the miserable prognosis that I was facing.
I was unable to self-inject in the lower abdomen because of severe burning, swelling and pruritis. Therefore, I used the anterior thigh for my three years of two weeks on and two weeks off therapy. My white count went from 1200 to as high as 8000 in a cyclical response pattern. I experienced only moderate intermittent bone pain, but did have moderate to severe gagging, nausea and intractable cough that only seemed to dissipate for 2-3 days a month. In addition, I experienced a loss of my usually robust appetite. The vaccine injections from Duke caused only minimal irritation for the 7 month protocol.
It is now almost 5 years since my lung surgery and almost 2 years that I am off the GM-CSF. I have had so many total body CT scans that I glow in the dark and some many MRIs that I de-magnetize credit cards, BUT all have been negative.
Perhaps my special perspective as a physician and a patient allows me to offer some advice.
- First, think about anything in your personal or family history that might be unusual, such as my neutropenia.
- Second, find doctors that you feel good about and then trust them to do the right thing for you. I think it is much more important to spend a lot of energy getting the right people on your team rather than trying to micro-manage the disease yourself.
- Third, no matter what statistics say, you are an individual and you might be the one that survives.
- Finally, you can make a choice to lay down and die or you can push through any side effects of treatment and live your life to the fullest.
Dr Lynn Spitler
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I just wanted all your readers to know how proud I am of my dad and how much I love him. Every day since his diagnosis has been a blessing, and I hope that there are many more to come. Having been through a scary experience myself, I know all too well that you cannot take anything or anyone for granted. I know that my dad's stage IV has forever changed him too. I am glad that he decided to share his experience and knowledge with other melanoma patients and their families, in the hopes that they can find the strength and courage that he did.
I am so grateful to all of the doctors on my dad's team and to experimental treatments which *everyone*, regardless of their medical expertise or socioeconomic status should have access to!
Dad, if you're reading this, I love you and I'll see you soon!
During the second bout of my father's melanoma, I witnessed his fighting attitude on a daily basis. He managed to retain his sense of humor as well. I'm convinced that that has just as much to do with his not being a grim statistic as the experimental vaccines. I had no idea that he is now able to demagnetize credit cards...
When dealing with an immunologic affected disease such as melanoma it is certainly possible that patient motivation and life outlook may have a beneficial effect on the immune system and the disease. As someone who has had the misfortune to be tortured on the tennis court over the past 20 years by this remarkable person, it has been a privilege and an inspiration to see his fighting spirit. I am sure that Dr. G's efforts will inspire others in their struggles.
Hi --
Was very inspired by Dr. Gardstein's story. My mom is in the exact same predicament of the spindle cell, neurotropic desmoplastic kind. I sent her this blog. We'd really like to know how Dr. G is doing.
Mom has stage 4 disease and is about to enter into a second line of immunotherapy: ADI -- provided she will receive approval from her insurance company. She tried leukine but this didn't work. Stage 3 turned into stage 4.
Hope to hear from someone and hope that Dr. G is in fact, still alive.
Thnx,
Terrie
Thank you- I cried when I read your/your families entries.
I NEED A DR WITH EXPERIENCE WITH MELANOMA ON THE TOP OF A FOOT OR HAND- ANY HELP IS WELCOME- God Bless
I am a 44 yo marathon runner, skier, etc, and most importantly a mother of twin 5 yr olds that works 60+ hrs a week and spends the majority of my free time with them.
Last November 27th I was diagnosed with malignant melanoma (redundant but I'm told accurate) on the top of my foot- a mole changed over-night.
On 1/2/08 I had an excision, skin graft and sentinel lymph node removal from my groin. The surgeon said all was clear..the oncologist wasn't at all responsive and finally after pushing, I saw a radiologist last week.
The radiologist sent me immediately for a PET scan this week. The radiologist called yesterday to tell me that I need to come in on Monday because there is still the lesion on my foot.. I am PETRIFIED about losing the use of my foot from radiation/amputation or other surgery to the bone and really don't know what to do...Is it more selfish to keep my foot, stay as active as possible and only live a few more happy years with my kids, or lose my foot, become inactive, etc and miserable? I have been told by the surgeon and radiologist that even if I keep part of my foot, it will be lame.
THANK YOU FOR YOUR INSPIRATION!!!!! My husband lost his best friend at 22, father at 52 and our dog (Maxwell the dog had cancer on his right foot in the same place as mine) to cancer, so I really have very little as an outlet. My email is abitz@usatoday.com
I was diagnosed Feb 4 and am deciding on which adjuvant therapy to pursue....BUT the reason I'm commenting here is that my father is a double amputee and there is much to be encouraged about there. At the age of 82, he walks on two prostheses. Another man who lives in the same town I do is a double amputee and works out regularly at the YMCA. He's in much better shape than I am! I hope you don't need to amputate anything, but again - it is life changing, but not life ending.
I was diagnosed Feb 4 and am deciding on which adjuvant therapy to pursue....BUT the reason I'm commenting here is that my father is a double amputee and there is much to be encouraged about there. At the age of 82, he walks on two prostheses. Another man who lives in the same town I do is a double amputee and works out regularly at the YMCA. He's in much better shape than I am! I hope you don't need to amputate anything, but again - it is life changing, but not life ending.
Thank you for sharing your story. My son was 10 years years old when he was diagnosed with a stage III malignant melanoma on his heel. He completed his year-long interferon treatment plan and has had three 'clean' PET/CT scans...but we live day to day wondering if it will return, and if it does, what treatment options will there be. I really appreciate your willingness to share your treatment history and advice.
Hi My little sister is 24 and has malignant melonoma,probably now stage IV, she is ready to give up because shes tired of battling.In the last year she has had over 70 lymph nodes removed, a small tumor from her chest removed and last week she had two large tumors removed that were blocking her intestines, keeping her waste trapped.The doctor said it was rare and very dangerous. She had one round of IL-2 treatment but that was atleast 6 weeks ago and she has been unable to continue due to constant pain ,infections and surgerys. We dont know what to do now She refuses to do anything but I NEED HELP PLEASE. my email is rockandniki@yahoo.com
As a General practitioner (Family physician) in New Zealand, also with melanoma, I am greatly heartened by this amazing story. As you well know you have beaten all the odds. There is hope!.
Thanks for posting.
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My son was 8 years years old when he was diagnosed with a stage III malignant melanoma on his heel. He completed his year-long interferon treatment plan and we are afraid ll it affect him again if it comes what can be done.
My son was 8 years years old when he was diagnosed with a stage III malignant melanoma on his heel. He completed his year-long interferon treatment plan and we are afraid ll it affect him again if it comes again what can be done plzz
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