A couple of months earlier I was in for my regular check up and although my body scan had remained clear and stable, my brain scan had showed some activity. A few new tumours and some growth in others. I had been in to see the Neurosurgeon and was being scheduled for gamma knife #5. I had been told that one of the tumours was in the pons again (not a good place to have a tumour) and that one of the other tumours had been bleeding. (also not good) This was terrifying news to get. When I saw the Neurosurgeon and went over the scans with him I found out that this was not true. Not sure how that mistake was made but was relieved that it was. I walked away from that appointment on cloud 9, sang all the way home in the car. Then realized that I still had to go for gamma to have a few tumours treated but happy that it wasn't worse. It's all about perspective I guess. On my way home I ran into my family doctor at the liquor store (yes, I felt like a glass of wine after that day) and as he was curious about how things had turned out having heard about the mix up, so we had a quick conversation in the middle of the LC. This is now my life..... talking to my GP in a liquor store about brain tumours, bleeding and otherwise. You have to laugh ....... or have a nervous breakdown.
So, at my check up I learned that a new drug had just been approved! The combination therapy that I had tried to get on through a clinical trial a few years ago has just become available. This combination is the drug that I am currently on now Dabrafinib plus a MEK inhibitor which combined in the clinical trials showed much better response rates. So I was super happy to get started on this right away. The drug that I am on now is working really great for me but this could work even better for longer and hopefully would help to control the tumours in the brain plus the side effects are minimal. Great! Sign me up! I started on it a few days later.
A couple of weeks later and I was in for gamma knife surgery. Since this was #5 for me I knew what to expect and things went pretty smoothly. It was really nice to catch up with my wonderful nurses Michelle and Olive. They make the whole gamma experience so much more comfortable and bearable. My sisters and I had a hair straightening party the night before so that we could calm down my crazy hair to make it a bit easier when it was time to attach the gamma head frame. Because of the different drugs I've been on my hair has thinned out at different times and has now grown in as tight corkscrew curls. The great thing is that it has grown back in!! After the pre-gamma MRI the surgeons come up with a treatment plan and come and talk to me. I have 4 tumours that they will treat and my treatment time will be 1 hour. I am shocked at this since the last few times it was only 20 minutes or so. This seems like a long time to me to be laying in that machine with my head bolted to table but I guess before I was only getting 1 or 2 tumours treated. He returns a few minutes later to let us know that there is actually 1 more that they would like to treat so that would bump my time up to 1 hour and 30 minutes. Yuck! I pick out a couple of CD's (good thing I brought a few to choose from) and I am the first out of the four of us to go in for my treatment. My sisters are just arriving to let Jeff take off to get to work. It has been an early morning having to be at the hospital before 6. I come out an hour and a half later with a throbbing head ache. I don't always get the rebound headache afterwards but this time is especially bad. They wrap my head with gauze and give me some Tylenol and a couple of hours later I am able to head home.
I usually bounce back from gamma within a day or two but this time not so much. I hadn't been having any side effects from the new treatment so that was a relief. It's always difficult and scary to start a new chemo drug like that. You just don't know how your body will react to it. Then I woke up one morning feeling like my head weighed 100 pounds. My head was pounding and I felt like I was in a fog. Before gamma knife I was having episodes of a knocking and throbbing sensation in the right side of my head and lots of dizziness. I had 2 minor episodes after gamma knife and then it stopped. But this was completely different. I was hoping it was just a flu or something but it continued everyday all day. The fatigue was draining me so that I could barely get through the day. Something was wrong. I called my gamma nurse and after talking to my doctor I was scheduled for a head CT scan. Could it be swelling from gamma which was quite common and could be treated with steroids or something else. Meanwhile a lump had appeared on my inner thigh. I couldn't see anything on my skin but could feel this painful lump underneath. I thought I'd just watch it for a bit and see what happens. Within a week I had these painful spots which now had turned red and spread to both thighs and arms. I knew something was going on but I really didn't want to sound alarm bells and have them discontinue my treatment. I tend to suffer on through things hoping they will clear themselves up so that I can stay on the best treatment available. I mean chemo isn't supposed to be easy right? Some people are super sick through their treatments and still carry on.
I got a call from my pharmacist checking in on things to see how I was feeling. I couldn't lie to her so I mentioned these rash like hives. She was very understanding and encouraged me to call my nurse and even offered to do it for me since this was a reportable symptom. These treatments are all so new so I guess they want to keep a really close eye on things because they really don't know all the side effects yet. After a talk with my nurse we decide that it can wait until Wednesday when I'm scheduled to come in for my appointment. Wednesday comes and my doctor, my nurse and a resident are all examining my skin which has become even worse over the last few days and I cringe whenever someone touches me. My doctor says he doesn't think that it appears like melanoma lesions which is what he automatically thought when he heard about these spots. Now, this didn't even enter my mind! That my cancer was spreading into lesions all over my arms and legs. Could that really happen? No, it doesn't appear to be consistent with melanoma. It may be Erythema Nodosum, a rash that would be caused from the new drug and causing inflammation in the tissue under the skin. You need to stop treatment immediately. No, I don't want to stop the treatment. I want to be on the best treatment and this is it right now. Can't I take Benedryl or something? No, this can be fatal. What? How can a rash be fatal? Our conversation went something like that back and forth. In the end I get the point and realize that I have to stop it. If the lesions go away we know they were from the drug. If they don't I will be scheduled for a biopsy. I still feel grateful that I can stay on the one drug and just discontinue the new one but I want to be on the best. He does mention that we can look at restarting it as a half dose next month. I hang on to this hope and make my way to the lab where I sit up in the chair and try my best to hold back the tears. I can't explain what it feels like to have your treatment stopped. It sucks! I see these treatments as my tools to fix my body... help me fight defend myself against the cancer. The more treatments you go through the emptier the toolbox gets. So now I have 2 treatments in my toolbox, the one I'm on now & 1 more that would be very accessible in the future. There is also 1 coming in the future that may be hopefully an option if I need it. There is more hope than ever right now in the melanoma world.
My head CT scan comes back looking good and they see no reason for the symptoms that I'm having. Then, within a week of being off the new drug the headaches subside and the fog I've been living in clears. I realize just how terrible I've been feeling. Sometimes you don't realize it until you're feeling normal again. The skin lesions all turn into bruising which looked terrible but then cleared up on their own. I did have one of them get infected which was a pain but healed on its own. Shows me how great my body is still working at healing itself. Obviously, this new drug was not only causing issues in my arms and legs but was also causing problems in the brain. That's the last thing I need. The next few weeks are amazing! Feeling so much better I am able to have fun with Jeff and the boys. Jeff worked like a madman trying to finish building our deck so that we would have the summer with the pool up and running. What an amazing job he did! It looks fabulous and we have been spending lots of time enjoying it. It's our little oasis! Now if the construction happening across the road would give it a rest we could have a peaceful summer! We are having a super relaxed summer anyway with the boys. No scheduled activities - just fun and we are loving it! We had a fabulous time in Vancouver with Callanish when we went for the premier of the documentary I was a part of. We all had a great time! The premier was a great success for Callanish and received a lot of positive feedback and they had to schedule more showings. Goes to show how important the work that they are doing is and how wonderful they all are! My family doc was in Vancouver for a conference and saw the documentary while he was there. He was quite surprised when my face popped up on the screen not expecting that I would be in a documentary half way across the country. And I was shocked that he happened to be at the first conference that it was shown. Very grateful that my health care team is always out there searching for information and anything that could help them with treating their patients.
I did decide to restart the Trametinib at a half dose at my last appointment to see if I could tolerate it and then slowly build up to the full dose. I felt that because I started the drug and had gamma knife so close together that it was just too much for my body to take. Maybe now I would be able to tolerate it better? But I changed my mind the following day. I am feeling so great now and want to keep it that way for the rest of the summer. I think that sometimes I let fear dictate my decisions, especially when it comes to treatment. Maybe that just isn't the treatment for me. I went for my first post gamma brain MRI last night so will find out next week what kind of response I am having. The hope is that it stopped all the tumours from growing anymore and will start shrinking them. I have responded amazingly well to the drug that I am currently on and although they tell me it's a short term solution, I'm not so sure about that. There is evidence now showing that there are a small number of people having spectacular responses. (I love when my doctor says the word Spectacular! It hasn't been a word that melanoma doctors have gotten to say in the past with it having had such a grim prognosis - until now!) My doctor doesn't really know what to recommend at this point and says that because I've been on this drug longer than anyone else in Manitoba, he can't say for sure anymore that it will stop working. Could this miracle drug be a longer term answer for some than originally thought? I'll go with that. And so, as long as these glimmers of hope keep shimmering so will I.
On that note, I hope that you all enjoy this amazing summer!! Don't forget your hats & shades and cover up! xo Natalie
