Sunday, July 14, 2013

Adjuvant Treatment Plan

This is the first official post on my blog. Wanting to do this to share with family and friends the latest with my cancer. The post gives a brief background of my illness and treatments to date and then an overview of the next step - biochemotherapy. I hope to have the blog arranged to keep my loved ones updated and share this experience (the physical, emotional and spiritual journey) as well as being a source of information. I feel like I'm getting so much info these days.

For those that don't know I was diagnosed with melanoma on May 9, 2013. This was done via a shave biopsy of my left lower leg by a local dermatologist here in Peoria, AZ. I decided to go to MD Anderson Cancer Center in Houston for follow up. I had a surgery on May 21 that included a Wide Local Excision (WLE) to cut an area of my skin out of the side of my calf. They also did a sentinel lymph node biopsy and removed 3 lymph nodes from my groin and 1 from my left lower abdomen. 3 of the 4 lymph nodes came back positive for melanoma. I also had a satellitosis in the piece of my leg cut out.

All of this means that I'm stage 3c for Melanoma. The 5 year survival statistics are not good - somewhere between 26-40% based on historical figures. Fortunately, I'm not a statistic. Also, fortunately, the last couple of years have seen some pretty compelling drugs come out  to treat melanoma. I'm cautiously hopeful, but also very much at peace at accepting God's will in this process.

I went in for an additional surgery on June 13, 2013. This was a complete lymph node dissection of all the lymph nodes in my groin and lower abdomen. They also did an MRI of my brain and CT scans of various parts of my body. All of the lymph nodes they took out were negative for melanoma and they couldn't see anything in my scans. I am offically at a state called "no evidence of disease" or NED.

I will be starting biochemotherapy soon. I was set to start on July 17, but I have a drain in my stomach from my last surgery and it is still draining too much so they cannot do the biochemo for fear of infection. I have to wait until the drain is out before I can begin treatment. Hopefully not too far away.

The biochemo is a treatment that consists of 1 week in the hospital receiving 3 chemo drugs and 2 biological agents - they put you near to organ failure (heart, lung, kidney failure etc). This is why they need to keep you in hospital during that time. From a buddy of mine that has been through this - he said the time in the hospital actually isn't the worst of it cause they can give you tons of meds (pain meds and ativan among other things). After 1 week in hospital, then 2 weeks at home recovering (I'll travel back to AZ for this time). The first week back I hear is the worst, you feel awful, but don't have the same meds from the hospital. The second week back you start to feel a bit better. This cycle happens 6 times - so a total of about 18 weeks.

As I don't currently have any evidence of disease, this treatment is considered adjuvant. There could be (and probably is) microscopic disease that they just can't see yet on the scans. This is meant to help kill anything that is floating around.

The only other option was a thing called Interferon, which was a year long treatment and also pretty awful. Similar positive impacts as biochemo - unfortunately both of them have questionable positive impacts at best. I preferred the more intense and shorter treatment versus the longer interferon. When comparing the two, the overall survival rate was the same for the two - about 56% (included all stage 3 levels - unfortunately I'm the worst of the stage 3's). The biochemo did have a longer disease free survival. With interferon, the melanoma came back on average of 1.4 years. With biochemo, the melanoma came back on average of 4 years... but again both types of patients expired at the same time on average. Thus, when it came back on biochemo it came back more aggressive.

We decided biochemo partly because the treatments for melanoma are progressing rapidly. The longer I can last with disease free survival, the more opportunities for treatment plans to improve.

There are a number of more promising treatment plans for stage 4 melanoma. I went to John's Hopkins in Baltimore (they concurred more or less on my treatment plan) and they talked about a promising treatment they do for stage 4. Interestingly, they don't do biochemo for stage 3, but only stage 4. I also talked to a nurse at the National Cancer Institute in Bethesda. They also have some promising treatments, but again only available to stage 4 patients. A bit of a conundrum - better treatments for worse disease. I'm grateful to know there are options down the line.

I'm also excited about some integrative medicine, naturopath and diet options that I have. I am just learning about these and will do them in conjunction with the other treatments I pursue.

Emotionally, I have up days and down days. I definitely feel like I've awakened from the fog of my life (pre 5/9/13). I'm grateful to be awake. I feel more strongly (both ups and downs). I'm more engaged in my marriage and my kids lives.

More to come.

7 comments:

  1. Thanks for the update John. Keep fighting.

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  2. We were at the temple on Friday and put you and your families name on the prayer role. We are continually praying for you! Even little Paige. She never forgets to pray for Uncle John's leg :)

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  3. Always in our Prayers!! Love you all!

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  4. We are with you in our hearts! Keep up the good fight! You can do it! Love, Wendi & Family

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  5. Wow...thanks for the update! You are in our thoughts and prayers.

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  6. I love you bro....give me a call (310) 935-9417

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  7. Thanks for the update John! You are in my thought and prayers. Can't remember if I ever told you, but my mom went thru non-Hodgkins lymphoma and got very involved in the diet side of recovery. She felt it helped immensely. If you want, I'll get you her number. Fair warning, you might get tmi lol

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