My Diagnosis: A Brief History

I was initially diagnosed with Stage 3 malignant melanoma on my left facial cheek in October, 2005. In November, 2005 I underwent surgery to remove the tumor, as well as a left neck dissection that revealed 2 of 17 lymph nodes being microscopically positive for melanoma. In January, 2006 I underwent high-dose localized radiation treatment to my left facial cheek. By December of that same year, I had confirmation of a local recurrence and a met to my left femur was found. I had surgery to remove the local recurrence and met to the femur in January, 2007.

My Treatment Options

March, 2007: My Oncologist explained that the IL-2 we had planned to utilize is now out of the question since both surgeries were successful and there is no measurable disease.

If I chose to do BioChemo, my Oncologist explained that he would administer it over a period of five to six days and then I would have approximately 20 days off between treatments. The goal would be to get at least three high-dose treatments in. It was explained that while I would be in a privatized ICU setting, I could shower, change clothes, watch cable tv, use my PSP game console, my laptop computer with internet connection, use my cell phone, play DVDs and eat what I wanted without any restrictions. They would encourage me to take walks and be as active as I could to keep my strengths and spirit up.

The side effects of BioChemo may include fatigue or nausea at first but they suspect I would do well by the end of day-one. The important goal for the BioChemo would be to prevent any future recurrence and provide a lasting NED benefit. This seems to make more sense to me than the high-dose IL-2.

Regardless of my decision, I would undergo PET & CT scans every two months. I believe I should hit the free-floating cells early, being that the BioChemo is a “preventative measure” for me but I need to do it with complete knowledge of my condition and situation. Of course, the other option is to do nothing, and try IL-2 or BioChemo in the future if a recurrence presented itself in an inoperable location. They also mentioned that I could have a third surgery on my face to obtain better margins but I do not want to mess with the recent skin graft.

I inquired about the use of supplements and was told that as long as anything that was taken was “physioligically reasonable”, I should be okay (AHCC, Vitamin C, D, Centrum, etc), as long as I did not pump-up the daily intake suggestions there was not much concern with supplements. I must add that in the end, I chose not take any supplements throughout my treatment.

My main concerns were few but heavy:

My Oncologist stated that due to my choice in having the elective surgeries, there currently is no measurable disease in my body to judge whether the IL-2 or BioChemo would be working. So my treatment goal would be to mop-up any residual cells. He added that there is no proven benefit to any treatment at this point in time and without any measurable disease, we simply won’t know if either treatment would be doing anything at all. He continued, stating that it was his opinion, that my melanoma was not aggressive.

Luckily, they say I am not in a hurry to make a decision but I have an issue. I firmly believe that mopping-up cells is far better than trying to shrink a tumor at a later date - but no one can say for sure if anything would actually work in that regard. I am currently NED with the knowledge that there are still some microscopic cells on the margins of the face - even after having two surgeries performed on it. I have always said that if you have melanoma, the best thing to do is to cut it out when it is possible and consider post-op treatment to mop-up any cells.

What is BioChemo?

I had to do a stress test on a treadmill about a week or two prior to the initial treatment. This was to make sure that my heart muscles were able to withstand the treatments.

BioChemotherapy is a treatment regimen that combines three chemotherapy drugs with two active biological agents, IL-2 and Interferon. The BioChemo reference is more to the fact that it manages/messes with your RNA & DNA (in a sense) and from what I understand is slightly more biologically-involved than standard chemotherapy. Interferon can be combined with other drugs during the treatment and I receive a total of approximately six drugs to treat the cancer, itself. These are administered at differing times on a set schedule throughout my stay in the hospital. In essence, BioChemo is a combination of IL-2, Interferon, Vinblastin, Cisplatin and one other that I can't think of right now.

In my case, prior to starting each BioChemo treatment round I need to have a tube or line put in the jugular vein in my neck because it is a larger vein and can hold up to the toxicity of the treatments. Smaller veins can have the tendency to collapse, so using the veins in the arms or wrists is out of the question. It only takes about five minutes to undergo the procedure. After numbing the area, a small incision is made. The goal is to enter the vein and drive a smaller tube down toward the heart valve. This smaller tube comes within a few inches of the heart. With each BioChemo treatment I endured, I got to see them perform this procedure on a television monitor and there was/is absolutely no pain involved however, as the tube nears the heart, it pushes excess blood through the valve(s) and I felt a slight palpitation/jump in my heartbeat. Actually, it was an odd sensation but kind of cool to watch the monitor, as it kept my mind occupied.

By delivering the BioChemo regimen through the heart valve it is quickly pumped through the body via the bloodstream. The line is left in your neck and they tap into it when they administer a new dose of drugs. When you want to shower, they tape off the access ports. If you want to take a walk, you have to wheel an IV line along beside you. I found that to be most depressing and cumbersome, especially for a short trip into my bathroom. But if I were on a regular “exercise walk”, I found that any spot in front of a window would lift my spirits.

When the treatment round ends and you return home for a break they remove the line from the neck and you go about your usual routine as you feel up to it. In my case, I return to the hospital two weeks later. The line is placed in the neck again and the entire process is repeated.

Interferon and IL-2 are proteins that are naturally found in the body. They usually respond when an infection of some sort is present. The treatment is aimed at reducing the cell division of a tumor. Eventually, a large majority of tumors "die" at their center and unless there is some cell division taking place along the edges, the drugs will not work effectively. A cancer cell in-effect, kills itself “internally” while the outer envelope of it continues to grow and divide. This division is what the drugs aim to stop. By acting against the division on the outer wall, the overall growth and spread can be inhibited.

In my situation, there are no measurable tumors but there are microscopic cells floating about inside my body. The treatment is designed to keep them from sticking to some organ or cavity and prevent them from dividing. If the cells cannot divide, the tumor cannot grow. In the case of a measurable tumor, this would mean that it would starve itself of the ability to multiply from the inside-out. A lot of tumors do bring about their own demise by blocking off their own blood supply however, many times they are continuing to grow on the outer edges. Keeping the cells within one, specific area will help to prevent a spread or metastasis elsewhere in the body and eventually (hopefully) kill the local growth within those that have measurable disease.

One of the drugs I receive is a synthetic form of the sap from a flower known as the Madagascar Periwinkle. Its name is Vinblastin and it tends to cause the hair loss but it isn't used alone. The other, Cisplatin, is a platinum-based drug and also brings about hair loss. I have yet to notice any hair loss but it is different with everyone and they say that the hair does return within time. Almost all of the drugs are cytotoxic, which means they are toxic to cells. Remember, it is the cells and stopping the cell division that strips a tumor of its ability to grow and/or spread. Any of the drugs that end in “tin” (Cisplatin, Vinblastin, etc) are derivatives of Platinum, which are well-known to affect the taste, smell and other senses. Again, the side effects vary from person to person and from treatment to treatment but mine were rather stable (loss of taste, bad interpretation of scents/smells, lower back pain, fatigue, etc).

The BioChemo attacks RNA, DNA and messes with the tumor cells as they attempt to divide but it also has the potential to mess up a whole lot of "good" stuff, too - so you have to watch for many things like kidney function, neutropenia, etc. Neutropenia can make you susceptible to infections from eating fresh fruits and vegetables. They monitor kidney function, blood counts and whatnot all throughout my stay. I just zone out and concentrate on the end-result.

My decision to go with BioChemo was based on what I felt was best for me. I never had any real symptoms in fighting melanoma so it was much like a “silent killer” within me. The only thing I wanted was a “physical confrontation” with it to make myself “feel” the fight. I actually did get more than what I asked for – as it eventually took its toll on my body and mind.

My Decision Regarding BioChemo

I am reminded of a statement that I made to others who were in the process of deciding on whether or not to undergo BioChemo. I asked them the same question that I had asked myself, “Am I a sprinter or a marathon runner?”

Is BioChemo the way to go right now or should I just keep my head up and pray that I can keep this at bay naturally? Of course no one knows for sure if I will have a problem in the future or not. Any tumor in my body will always be surgically removed whenever possible. If I do any type of treatment at all I want to utilize it to mop-up cells. I now know I have free-floating cells.

My dilemma is that there is no guarantee with any of my decisions and without any visible tumors, there is no way of measuring the current benefits of my decision. I sit here healthy, normal and with a boatload of a burden that drains my thoughts. It may have a direct impact on my survival, yet there is no true data to support any of my choices. I just don’t know what to do. I can do the treatments now to fight these cells, but why? I can also hold off and maybe not need them for a year or two if (if at all) or until another met appears - and by that time perhaps there may be more reliable data and better treatment options. If I choose to do a treatment now, I might not have the option for another, more-impressive trial(s) in the future. This decision of waiting to utilize a treatment option for unresectable disease or hitting cells early with what is currently available is a real mental drain. I debate that perhaps I should just stay put and look around for more trial options, simply getting scanned every two months.

Cells. To fight or not to fight? When should I go into battle with these d*mned cells? I am currently healthy enough to do it – but at what benefit? None is measurable. Do I sit still? If I do, melanoma might hit me harder the next time. There is no way to "see" success. Why fight a new battle when no one can tell if you are winning? It's like this war with the terrorists. There is no clear enemy and my thoughts are so screwy.

My BioChemo Experience

Although I had the opportunity to undergo BioChemo at Stage 3, I declined it but had I known more about this cancer at that time I would have chosen to do it at that time. Either way, surgery before any treatment would have been and always is my preferred course of action.

I had to do a stress test on a treadmill about a week or two prior to the initial treatment. This was to make sure that my heart muscles were able to withstand the treatments.

I started BioChemo as a Stage 4 survivor on May 2, 2007. I’ve been feeling awful and am trying to recover but it is proving to be very difficult to get back to any bit of normalcy. Progress is very, very slow. My eyes cannot really focus much on my keyboard as I type, my brain is somewhat foggy and I have been nauseous since the completion of round 1. I have been pumped full of so many drugs that I can’t sleep, can’t stay active and cannot find the strength to do much at all. I have to keep telling myself that I am right where I wanted/need to be while enduring such a devilish procedure.

With only microscopic cells that were in the Path Report from my last surgery, I am confident that this dosing of BioChemo will help me in the long run… but I have never felt so bad in my life.

While I am now back at home, I cannot keep much food or liquids down. It seems that only 7-Up, Jell-O and Wendy’s Frosties are the only thing my body wants to accept into it’s system. My taste buds lost some "flavor" and that was a real bummer. As such, cereal and cold milk was high on my list.

I have not e-mailed or called my friends, I haven’t been able to sleep or stay active and barely gathered the strength to return to the hospital this morning for follow-up blood work.

I must say that the Doctors were encouraged with how well I was doing in the hospital but I was so doped-up that once they injected me with the final dose and sent me home, all hell broke lose and they left me to my own devices. I just feel they should not do that to people in such a harsh situation. I simply cannot see how they can do that to people. I was on Demerol while in the hospital and that helped a great deal but come “discharge day” they failed to give me anything more than two anti-nausea pills and told me to take some Valium, as needed.

I feel like such a low-life. I’m only 35yo but I guess this treatment will kick you in you’re behind regardless of your age or health.

I made it through the first cycle (4 days) of BioChemo (includes IL-2 in the treatment plan) and I didn't miss any bags. I'm not sure if this makes a difference or not. The IL-2 is administered over a period 15 minutes, every 8 hours. In between the IL-2, they pump other righteous and toxic drugs into my system and monitor my temperature and blood work.

I felt pretty darned good until they released me from the hospital with minimal anti-nausea medication and I ran a bit of a fever that I had to keep an eye on. When I returned home after the first round, I found that I had lost ten pounds over four days from vomiting up a storm. I managed to gain eight pounds back and they will try more potent anti-nausea medications the next time around. I hope they get it right because the true effect from this treatment hits you about three to four days after you leave the hospital.

My BioChemo Side Effects

DTIC, IL-2, Interferon, Cisplatin and Vinblastin. It was not fun but very educational...

Cycle 1: Severe nausea upon returning home with lots of heartburn and about a week of recovery time from fatigue. Just when I was feeling better and got my appetite and taste buds back...

Cycle 2: Upon returning home, the nausea was controlled very well with a three-dose RX of Emend - but the fatigue lasted nearly two weeks after the cycle. Again, right when everything tastes awesome and exactly the way it should again...

Cycle 3: My Oncologist said I could have Demerol as-needed, as they were rather liberal with it for BioChemo patients. But on the fourth day I threw one of the nurses out of my room because she was making me go through all of the motions and questioning my "need" for it. She wanted me to "prove" that my teeth were chattering and that I had the chills.

For me it was nausea. If they could control the nausea once I return home, the BioChemo would have been a pretty tolerable treatment for me. I feel if it weren't for the nausea, I would have sailed through this with flying colors (shy of the high temperature). I lost ten pounds during the first round but managed to gain eight back before I returned for the second. Interestingly enough, one of the meds I was given causes facial wasting. I looked a little more like someone who had been stuck in a concentration camp (in the face) but the fatty tissue/weight did come back. They even told me that my hair might start coming out in clumps, so to give myself a "psychological edge" I had it shaved bald two hours before I checked into the hospital - but it is growing back without any problems so far.

I managed to get Zofran and/or Compazine to control the nausea during round 2 and I felt a lot better. I must have adjusted to the treatments or something because round 2 was much better than round 1. My Oncologist said it was best to notify the nurses as soon as "I" noticed the symptoms coming on so they could treat them and control them sooner and better. Yes, they are regulated in how much Demerol they can give you and they have to watch your heart rate and blood pressure as well, but I was nowhere near overdosing on the stuff and was by then a "pro" of a patient.

On my last night in the hospital I got a dose of Restoril. I highly recommend this drug. This is the only drug I got that the doctor clearly and blatantly referred to as a narcotic. I haven't slept better in the years before or since my diagnosis. This drug worked wonders for me (far beyond Demerol) and I was not foggy at all the next morning. I got a RX of it to bring home but I haven't touched it. It's powerful stuff and I only dreamed of such a drug when I was in the noisy hospital environment for the previous treatments. I slept like a baby and woke up very well refreshed!

As a Stage 4, I started BioChemo one year ago (2007). From what I was told, the average rounds are between six to eight. I made four. Unfortunately, no matter how hard I tried to ask my Oncologist for help in managing the side effects, I felt let down and they withdrew me from it after only four rounds.

At the beginning of BioChemo, the hardest parts are the 4-1/2 day stays in the hospital. These will begin to wipe your system out and flush your body with chemicals that you hope will do some good. I came home tired, not hungry and it took me well over a week to recover from each treatment round in the beginning. This recovery period diminished as the time went on but it adds up. Eventually I got tired of feeling so “good” only for one week, before I had to return to the hospital for yet another treatment round. Basically, one week a month was “good or enjoyable” for me.

My BioChemo Advice & Recommendations

I was a Boy Scout and one motto that stuck with me is, "be prepared", not neurotic... I think that the BioChemo made me neurotic but I learned a lot from the treatments.

When you lose your appetite (for whatever reason), watch the Food Network or any cooking show. Rather than finding it to be a “tease”, I found that it psychologically made me hungry and “forced” me to eat, even when I couldn’t stomach anything.

Nausea was a big factor for me during both phases of BioChemo and my appetite, taste buds and sense of smell was disrupted. I went through massive amounts of Gatorade, Ensure Plus, yogurt and anything I could that would settle well with my stomach and keep my energy and weight up. Still, weight loss occurred.

Cold foods have a tendency to numb the taste buds and as such I recommend 7-Up, Jell-O, Wendy’s Frosties/milkshakes or very cold yogurt. Frozen treats ruled the day when my taste buds failed me. I drank protein shakes like Ensure Plus or some bulk-type protein powder blended with milk and ice; a couple per day to maintain the weight if/when I didn’t feel up to eating much. Also, it was recommended that I try Butterscotch candy to help with the taste buds. I eventually tried some and they did seem to help, if nothing else it got my salivary glands flowing. Your taste buds will come back it just takes time.

Salt and sugar were my friends. As time progressed and I felt better, warmer foods like Campbell's Chicken Noodle and homemade potato soup were good for me. Eventually steak, lobster and the meals of man. By the end of treatment you'd eat the a** end of a rhino if that's all that was left in the world. Pepper was the unnecessary evil for me. Holy heartburn Batman! I later found out that Pepcid is given intravenously during BioChemo to thwart this problem but no one told me in a timely manner. You want to make sure you get Zantac or Pepcid upon your release from the hospital.

Shower and shave daily just to feel "normal" and "refreshed". I laid in bed a lot but showered and putzed around a little more each day - building up my strength. Groom yourself (nails, hair, etc…) before you head back into the hospital, so that when you return home you don’t feel so off-beat.

You have to watch for Neutropenia during the treatment, as changes in your white blood cell count can signal that you should avoid fresh fruits or vegetables (to avoid infection). I only had a problem with Neutropenia at the very beginning of my treatments.

For nausea, I took Emend. It's a 3-day RX you might want to ask your doctor about. It helped me a good deal most of the time.

While my blood work stayed in good/normal ranges, I did need to begin taking Thyroid medication (Levothroid) on a daily basis. The BioChemo factors play with those and your Oncologist or Doctor should keep you informed.

I experienced achy joints and a flu-like feeling accompanied by the chills and a bit of a fever while in the hospital. Consider taking Tylenol and Benadryl tablets to alleviate the aches and pains, rash and/or itching that you might experience from the treatment.

I’m angry that my Oncologist was more liberal with treating the side effects only after I switched to the easier, low-dose phase. I felt let down by him. I got offered more drugs after the high-dose phase stopped. I feel I could have at least made the average six rounds of high-dose BioChemo, as my body was proving to accept it without any complications.

My Post-BioChemo Treatment Options

I endured the BioChemo regimen. It is not easy and it does take a commitment – as all treatments do – but BioChemo is certainly known to demand more from an individual.

My Oncologist said that anymore BioChemo treatments wouldn't really yield anymore results, as there is nothing left. My recent scans prove my organs, lungs and bones to be clear. I was then offered Adjuvant/Maintenance Therapy, which is a year-long IL-2/Leukine regimen. I had to take advantage of that option within mere weeks of finishing the BioChemo or I was told it would not prove to be effective… so I opted for it. After four rounds (yes, four), it was decided that I now have three options:

I chose the third option.

I went into the hospital once a month for two days (for six months) and gave myself two injections at home in the interim. Then I went into the hospital once every other month for two days (for six months) and continued to give myself the double injections at home. That was a total of nine maintenance treatments, even though the entire treatment time consists of a little more than a year.

The IL-2 was administered in three doses, with the first bag being delivered over six hours, the second bag over a period of 12 hours and the third/final bag being delivered over 24 hours. I fared the three-stepped IL-2 process rather well and my brain was a little foggy but that came to pass.

The self-injections are painless and the side effects are much less severe. The dosages were as follows: IL-2 0.11mL/day and Leukine 0.5mL/day. You can inject them into any fatty area on your body, from your abs, to your thighs, to your buttocks. Make sure that you alternate the areas of injection daily. You will get self-injection treatment breaks in your preset schedule/calendar.

I began having lower back pain that would come and go with each of the lesser treatment stays in the hospital, as well as the self-injections that I would administer at home in the interim. This is the point where the preventative Tylenol and Benadryl tablets made the best impact. Within two or three weeks, my body adjusted and I was able to drop the Benadryl.

It is also important to note that this follow-up treatment tapers down over the period of a year – and the side effects can change from one treatment to the next, no matter whether you are in the “high-dose” phase or the “adjuvant/maintenance” phase. For me, the consistency was lower back pain that I was able to control with the help of Vicodin tablets and Tylenol. I soon learned to take a daily regimen of Tylenol as a preventative measure for the lower back pain.

The good news is/was that after completing the year of maintenance therapy – you may have the option of continuing for months or years beyond that – if you desire. Keep in mind that even when you graduate and get extended breaks coupled with shorter hospital visits, you will still be on a pre-set calendar/schedule of self-injections that are given during your “breaks”. These are a vital part in keeping the treatment “active” in your system at a lower dose.

My Post-BioChemo Effects (During Adjuvant/Maintenance Therapy)

Even though my health stayed intact, eventually I was battling every step of the way. But knowing that the game plan would soon be back under my control was a teaser. I had honestly reached the end of my rope with the IL-2/Leukine treatments.

While it was tough, I did have success for what I endured. I have yet to have any mets to any other area of my body. It does not cross the blood/brain barrier so I cannot say that it didn’t do me any good in that regard… the brain mets were simply an unfortunate progression – beyond the BioChemo or subsequent IL-2/Leukine treatments.

While my blood work stayed good throughout the year-long shuffle, the constant struggle began to deplete my fight and spirit. I changed a great deal and had no control over it – I was simply fighting for the sake of fighting – but for what? All of the unknowns? I eventually had to seriously consider those personal losses even though I knew I was making progress. It became very draining on me both mentally and physically. I eerily kind of became a drone and lost focus. I had a great deal of encouragement from a lot of people and I was still fighting with everything I had – even though I was getting so close to the finish line.

Endurance became a definite issue. It is not to be taken lightly and I was eventually overwhelmed by it even though my lab work repeatedly said I was “ok”. To fight so hard, for so long and to have to struggle with the notion of giving up or conceding defeat, while being within reach of the finish line was not pleasant at all. It became that serious for me.

At the beginning of BioChemo, just as you begin to feel great they have you scheduled to return for more harsh treatment – but that is the idea. Those were minor setbacks, but still not easy. The long term adjuvant/follow-up treatment over the following year is what actually started to “toy” with who I was biologically; the freak of science & medicine as I call it.

The maintenance phase slowly took its toll. I hate to say it but that is where I began to fail. My life had changed so much on a day-by-day, month-after-month basis that it literally changed who I was “inside”. It simply would not go away unless I chose to bring it to a stop. Not an easy decision – considering you don’t much have the “on again/off again” option with it.

BioChemo is serious stuff to consider. The quality versus quantity, the hope and unknown factors constantly toyed with me. I’m ashamed (but honest) to admit that what didn’t show up in bloodwork, scans, etc… was bringing me to my knees during the low-dose phase however, the prolonged molecular/biological transformation was an unknown - and a possibility that I accepted from the start.

For me, it worked. I am confident in it but I sacrificed a lot in the process. Is this what others endure? Maybe not. I certainly did not expect it and I think that is what brought me down. The “good and happy” things I used to see and enjoy became annoyances. I began seeing a lot of my “happiness” fade without being substituted by anything else.

My Oncologist asked me about “depression”. I told him that I felt no more depressed at the time than I did since I first learned of my diagnosis a few years before. But I was struggling with thoughts of success/failure and the ability to actually make it through such a harsh but potentially lifesaving treatment option. To lose that option would have taken away “hope” and one more notch under my belt - but to stick with it would mean yet even more destruction. I am not a believer in anti-depressants, as quite a few of them come with their own, unique issues for the individual and the last thing I wanted was more drugs added to the mix.

BioChemo Treatment Recap

Even though I am HIV+ and we had no idea what BioChemo would do to me, I chose BioChemo. Incidentally, MDX-010 is being studied for both HIV & Melanoma - but I still chose to undergo BioChemo.

My body held up great. My labs were very good. “Something” happened inside that I cannot explain. I do know that “it” - the “something” - disappeared and “I” came back within six weeks of ending the IL-2/Leukine treatments.

I appreciate medicine but I hate drugs. The ongoing treatment left me feeling like a drugged-out, psychological and physiological wreck. I was no longer who I had been in all of my 35 years… but again, I came back.

No one knows what will happen for the individual and even for someone like myself, who had no lengthy severe reactions – I was not prepared to feel so “removed” from whom I knew myself to be. I don’t regret it. I just find it hard to explain how “lost” and out of touch I felt with myself. For that, there was no way to prepare and it came so unexpectedly after months and months of treatment that it tended to “sneak up” on me in the same manner that an evil drug addiction must do to someone.

The battle for success/failure/accomplishment became blurred and it scared me to know that no matter how many tragedies I have endured in my life – the one time I needed “me” – I felt I was not around to function and think properly. All I can say is that no matter what course of action you choose you must maintain focus, hope and your unique spirit.

“So, Gregory, would you do it again?” I have to say, now that I have personally learned a great deal, “Yes, I would.” I would not enjoy it but I would certainly understand both my enemy and my ally a little better. For me, BioChemo and IL-2/Leukine went beyond physical limitations or barriers; it took me to a world I had never lived in… but now that it has ended I can respect myself a little more and appreciate all that I put into it.

I guess the original question I presented to myself rang true… the most important question someone can ask themselves when considering BioChemo is, “Are you a sprinter or a marathon runner?”

Before Brain Met Diagnosis

In January of 2008, my partner had a touch of the cold/stomach flu or something for a little over a week. Shortly after that, I managed to acquire a headache (mostly in my temporal region) and I tried to treat it with some Bayer aspirin and eventually some Vicodin - but without much success. About week later, the headache mysteriously vanished (overnight) and I felt fine, without any other symptoms (prior, during or after).

I returned to my Onc's office to discus my IL-2/Leukine Maintenance Therapy, as there was a recall in the medication that I was self-injecting. I also was to stay in the hospital for the 2 & 1/2 day low-dose IL-2/Leukine treatments but due to the recall, their supplier had failed to secure enough for them to continue with my treatments. I was happy to get a much-needed break, as the IL-2/Leukine was really beginning to take a toll on my body, mind & spirit.

During our appointment, I mentioned the strange headache while discussing my overall health and he asked if I would like to undergo a brain MRI. "It will give you something to do!" I said, "Sure!" expecting to get nothing more than peace of mind.

Craniotomy

Not so; In February - they found a small, pea-sized lesion in my right temporal lobe, near the surface of my brain. I had a craniotomy performed on March 27th, which included two titanium screws to close my skull back up. This is when I learned that children (pre-teens & teens?) who undergo brain surgery(s) will actually still have the ability for their skulls to fuse back together. Adult brains, on the other hand do not fuse back together and they/we are left with a permanent 1mm(?) gap between the intact skull and the access "hole". The scalp and internal brain tissue will fill in this tiny gap over time to prevent brain fluid from leaking from and/or infection/blood from entering the brain. This is a natural membrane layer of some sort (from both inside & out) that fills in that 1mm gap between actual bone.

In my case, I chose to endure the craniotomy because melanoma had never been in my brain before - and although "small", I always believe in physical confirmation (even though we were 90+% certain it was melanoma) - but we are still "normal" people and I would hate to overlook or misdiagnose some other natural, unnatural, trauma or aging issue. The lesion was removed and confirmed to be melanoma both during the operation and in the final Path Report.

This operation (as any) carried some risks, albeit low - and I developed a blood clot/hemorrhage in the surgical site within hours that was confirmed by a post-op CT scan of the brain & a great deal of pain in the area. The pain was controlled by Demoral -thank God - and I was eventually able to get some rest that evening. Eighteen hours later, the same Neurosurgeon re-opened the area and removed the clot/hemmorrhage and I was pain-free once again. At that point, I knew that melanoma had metastasized to my brain. Again, confirmation and surgical removal are very important to me, as I prefer to treat cells rather than physical tumors/lesions.

The use of SRS was discussed beforehand but I/we would have no idea as to exactly what it was we were treating because SRS Treatments and the like would result in no specimen being sent to Pathology. I certainly did not want melanoma taking precedence by simple assumption. I would have hated to overlook another cause or factor - at least the first time around in the brain. Beyond that, it is a vital organ.

Medical ID Dog-Tag

I also ordered a Medical I.D. dog-tag chain, knowing that melanoma was in my brain. I wanted to be prepared in the event that a future brain met(s) would go unseen or present in an area that would cause me to have a seizure or something in public. I was afraid that being 36yo, people might assume I was a drug addict, alcoholic or epileptic. I stopped by my local Fire Station and asked the Captain what a "First Responder" would like to see o the chain, what would help them. He stated that their first goal would be to administer oxygen and check the vital signs but the E.R. would be the ones to investigate the matter. My Oncologist and I decided on the following information:

(front)
FIRST & LAST NAME

(back)
D.O.B.
Kaiser MR#
CONTACT INFO (x3 #'s)

In what I believe was an attempt at "reverse psychology, my Onc's office mentioned that I was, "A little paranoid!?" Regardless, at my post-surgical, one-month follow-up brain MRI, 4-6 new lesions were found in differing areas of my brain.

WBR With Temodar

I decided it was now time for WBR with Temodar. We originally scheduled it for ten treatment session but eventually it was concluded that fifteen treatments (at a lower dose) would prove best (? - we hope) and bring about less side effects from the treatment.

Knowing that, doing WBR with Temodar and completing it on July 9th, I am thankful that WBR is a once-in-a-lifetime treatment option but localized radiation to my post-op primary site (left facial cheek), only lasted me eight months before I spotted a local recurrence with my own, two eyes. The follow-up scans (PET & CT revealed nothing). Is the fact that WBR is a once-in-a-lifetime treatment option a "Devil in disguise" scenario? It might be but... I was told that undergoing it now, as versus later should help to control and inhibit cell and tumor growth. However, SRS, gamma or proton therapy can and will be used (if needed) for any future brain lesions or as a final knock-out punch the now-treated WBR lesions. I can rest comfortably in knowing that I have both confirmed melanoma in my brain through surgery and treated it with WBR & Temodar. SRS, gamma and proton can be used in the future (if needed) - multiple times.

I was originally diagnosed at Stage 3 however, as melanoma moved through my body and I became a Stage 4, I like to break-down those mets into individual Stages in and amongst themselves to achieve confirmation. Case in point, my week-long headache could have easily been dismissed but it could have cost me dearly. It still might but at least I gave myself the opportunity to not let my preoccupation with melanoma to overlook other causative factors. Again, now that I have completed WBR, I can safely and comfortably choose SRS, gamma or proton if needed. I/we can positively assume that any lesion in the brain is most likely melanoma, since none of them will yield a physical biopsy.

I was also told that SRS, gamma and proton can cause swelling, related to tumor necrosis but that it should not be a problem (we hope) and if it is, they can surgically remove the dead tumor, if accessible or I would need to take a drug like Keppra or Steroids for an extended period of time as it resolves (permanently - ?).

My Neurosurgeon mentioned that I not "strain" my brain after my craniotomy. What does that mean? No NY Times crossword puzzles? How do you not strain your brain? I figured it out; he had to be referring to lifting heavy objects, exercise and straining during bowel movements. I also put on and tied my shoes while sitting, avoiding any position or circumstance that would cause an immediate increase in blood-flow to my head. I sit on a chair or my bed and lift my feet to my hands. If I drop something, I bend on my knees, while keeping my back straight and my head up and level to retrieve it.

Follow Up

Yup, I get manic but I get through it. I still had an issue with brain swelling during the WBR that sent me to ER. I had an awful headache and it frightened me but they kept me overnight, performed yet another CT of my brain, checked my WBC twice and sent me home the next day with instructions to increase the Steroids by one pill a day. I was up to about 5-6/day just two weeks ago am now weaning myself off of them and am at 2-3/day. I am beginning to judge when I feel the need for one and when I do not. It presents as an odd sinus-type of pressure - but one that is both manageable and controllable. That's important because steroids should never be stopped cold-turkey. I will remain on the Keppra and Temodar until further notice. A post-WBR follow-up brain MRI is scheduled for about 4 1/2 weeks.

Am I worried? You bet ya - but I cannot take Valium, sleeping pills, muscle relaxers or have a beer while I am on this treatment. It's not that I have a problem - but yes, anxiety remains an issue and the steroids certainly do not help in that regard. OTC Tylenol PM or Benadryl tablets do. I use them responsibly so I do not inadvertantly replace one physical/mental/psychological addiction with another. Besides, it's all part of the treatment process and will come to pass.

Apparently, Temodar can cause issues with constipation but I have no problem in that regard. They did mention up-front that I could take an OTC stool-softener but I have not had the need to do so.

I avoid any multi-vitamins (Centrum, etc), as there is still some debate over whether or not they enhance not only healthy cells but tumors cells as well. This "could" lead to resistance and while medically & scientifically debatable, I do not want to take that chance.

I drink Ensure PLUS, make homemade smoothies with protein powder, pop an anti-nausea medication (RX-strength Zofran) and eat what I can to maintain my caloric intake and weight Since my WBC is good, I add fresh fruits and vegetables to the smoothies and my diet, as natural should be okay in my book. I would suggest a Magic Bullet blender. They are well worth the money, small and so convenient. They REALLY DO WORK and it is a quality product compared to most of those other "As Seen On TV" gimmicks! I am VERY happy with the size, convenience, quality and ease-of-use. My dad had one in Hawaii and I had to buy one for our house here in Los Angeles. I have had it for 2-3 years now and it is VERY reliable and well made.

Photos of My Melanoma Adventures

Gregory 1
Gregory 2
Gregory 3
Gregory 4
Gregory 5
Gregory 6
Gregory 7
Gregory 8

Note: Gregory passed away in October of 2008. May he rest in peace.