Over the last couple of weeks, Kyle had three treatments of his new chemo regiment through IPT in the Bahamas. After having a bit of a reaction and scare from the first treatment (he had a high fever and shortness of breath in the evening of March 18th), we were hit with a wakeup call and decided we should starting making plans to head home to Toronto. Since his first reaction, he has been able to tolerate the drugs without any problems, however for a number of reasons we were starting to feel like the Bahamas wasn't the best place for Kyle at this time. We may consider returning to Freeport at some point in the future, but for now our plan is to get Kyle home to Toronto where he'll resume the same chemo treatment at a private clinic in the city with Dr. Gagovski. Dr. G has been treating patients with IPT chemo through his clinic for almost 20 years and has a lot of experience with treating stage IV cancer patients.
Over the last 48 hours Kyle's pain has increased considerably; now it's all along his left side from his neck down to his hip. Our original plan was to leave on Friday of this week to start our journey by ferry/car back to Canada, but very suddenly on Monday evening we decided it was time to pack up our things and get off the island. After four long months in Freeport, it was difficult for us to say goodbye and close the doors on the little slice of heaven we've called home...but we both had a strong feeling that it was time to move on and there was no sense in delaying our departure any longer.
We took the ferry boat across from Freeport to Ft. Lauderdale late last night. We're in Fort Myers now where our car has been living since we left for Freeport in December. We plan to start the drive back to Toronto from Florida either tomorrow or Friday morning, depending on how Kyle is feeling. We are so lucky to have our good friend Kyla with us now who flew down to Freeport from Toronto last Friday...she's here with us in Ft. Myers and will be my co-pilot for the drive home, while Kyle sleeps with Connor in the backseat!
We don't consider this move as taking a step backward, but that Kyle will be able to take leaps forward since he'll not only be surrounded by the support of friends and family, but also we'll have the comfort in knowing that there's backup emergency medical support available to him, if ever necessary (though we don't anticipate he'll need it!).
We're hoping the increase in pain and onset of new symptoms is just a bad case of island fever and that we'll both regain some strength over the next few days, so that he's able to resume his chemo treatments in Toronto next week.
Today went very smoothly. It was a long day and very different than a regular chemo day at Mt. Sinai in Toronto, but all in all, Kyle is doing well aside from his usual pain and discomfort. Depending on how he does over the next day or so and most importantly depending on his blood counts, Dr Bethel said he may want to do another treatment this week...probably on Friday.
It's safe for Kyle to receive chemo once or twice per week through the IPT method, because as I mentioned the other day, he was only given one tenth the regular dose of his chemo drugs. His treatments are 'potentiated' by the nutritional cocktail and particularly by the insulin that he was given before his chemo started today. The insulin dropped Kyle's blood sugar dramatically (from about 120 to 50 mg/dl), which didn't make him feel too great...he felt woozy for a few minutes and a bit light headed...but that was the goal. The idea behind this method of treatment is that cancer cells feed off of sugar. Therefore when the blood sugar in the body drops, healthy cells begin to metabolize fat but cancer cells immediately go into 'emergency mode.' During this time the cells become vulnerable since they open their membranes to soak up any sugar they can from the body. Once the chemotherapy is transmitted, they gave Kyle a small dose of dextrose (sugar), which the vulnerable cancer cells instantly try to gobble up, but along with the sugar, they also take in the sweet taste of chemo!
Anyway, along with benefits of IPT, it's expected that Kyle won't experience the regular side effects of full dose chemo such as nausea, vomiting, hair loss, low blood counts and liver damage. We're glad to be trying out a less invasive treatment approach and it all sounds fine and dandy in theory...now we just need it to work and make Kyle better!
We'll keep the updates coming and let you know how things go over the next few days.
The last several weeks have been some of the toughest times we've had to endure throughout this journey with cancer so far. Kyle has been declining; his pain has increased (which we didn't think was even possible), he's lost weight, and has less and less energy, which makes it difficult to even get out of bed some days...I can, however always seem to lure him out of bed when a wings or leafs game is on!
We know that Kyle's situation is not good and he needs help right away. We are grateful that Kevin, Kyle's dad is here with us right now and has extended his trip to stay another two weeks while we get Kyle started on his new treatment plan. Some more family will join us next week, which I think will give Kyle a huge boost!
On the flip side, we received some good news earlier in the week. We finally got the results from the chemo sensitivity testing we had done over four weeks ago using the tissue removed from the biopsy of his tumour. The results revealed that Kyle's tumours are 'sensitive' to a few different combinations of chemotherapy drugs. The most sensitive being a combination of gemcitabine + cisplatin...both drugs he has received in the past, but never in combination (he received gemcitabine last year as a single agent and cisplatin when he went through chemo in 2003, but it was given in combination with four other drugs). Apparently the synergy between gem and cisplatin is key, so it is definitely worth a shot!
After consulting with doctors across the globe, including Dr. Bethel (Bahamas) doctors in Toronto, Dr. Rosenberg (Florida) and an oncologist in California, we have decided that the best option for Kyle right now is to start on low dose chemotherapy using these two drugs. We were a bit uneasy about starting treatment here with Dr Bethel, but after much discussion and consideration we all agree that Kyle's in great hands and its safest for him to stay here in the Bahamas right now. He will begin insulin potentiated chemotherapy treatment (IPT) here on Monday.
The reason we have decided to do IPT vs. regular full dose chemotherapy, like he's had in the past, is because Kyle is too weak and 'fragile' as he says to take on full dose chemotherapy right now, considering all of the side effects that come along with this treatment. The benefit of having chemo through IPT is that he has the potential to receive the same benefit from the drugs as full dose chemotherapy, but since he will only be given approx. 10% the usual dose of the drugs, he won't experience the same damaging side effects as he would with full dose. The drugs have the effect of full dose chemotherapy because they are potentiated by a combination of insulin, glucose and other nutritional agents, which target the tumour cells and have no damaging side effects. This is not a new or experimental treatment, in fact it is now being done by more than 600 oncologists in the US today and much more around the world. Another benefit of IPT is that the treatment can be given much more frequently than in regualr chemo doses, because the drugs aren't expected to have much of an impact on Kyle's blood counts. For now, the plan is for him to have one chemo treatment per week and that may increase to two treatments per week, depending on his response and reaction.
I should also mention that interestingly, the chemo sensitivity test results also indicated that Ky is resistant to Votrient, the targeted medication Dr Blackstein prescribed and he's been taking since September. He's now happily discontinued use with Votrient, for good (he hated taking that stuff!). We were pretty sure Votrient wasn't working, but we wanted the confirmation before giving up on it.
So that's pretty much the full update for now. I wish I had better news to pass on, but what I can say forsure is that there is a lot of promise in the path ahead! All of Kyle's doctors agree this is a great and exciting next step for Kyle to take and we're hopeful about the outcome. We are constantly doing the best we can to get Kyle the best treatment and care possible, although at the same time we have to be realistic and consider his energy level and limitations at this time. There is a lot of information coming to us about treatments and doctors far and wide, but especially with Kyle's travel restrictions we have to make good decisions that will conserve his energy so he can stay strong and beat it!!
As Brodie mentioned the other day, we don't believe Kyle's cure will be in one treatment alone, so we will continue to try and hit this thing from as many angles as possible. He will continue with some of the other treatments, which doctors think Kyle is benefiting from such as the vitamin IV infusions and Coley's treatments (when he's feeling strong and brave enough take that beast on!)
We thank you all for your continued love, prayers and support.
Lots of love,
Vanessa asked me to write a blog post to update you all on Kyle. We know there are a lot of people that are thinking about him and anxiously awaiting any news. The flip side is, this has been a long and emotional journey for Kyle and Vanessa with ebbs and flows--and perhaps a little tough for them to convey what is going on, on a regular basis -- one thing is for sure, they are very thankful for all the tremendous support they are receiving from everyone at home.
My wife Alex, our 6 month old daughter and I were able to break away and head down to Freeport, Bahamas, where Kyle has been receiving his treatments since December. Vanessa asked Alex to come a few days prior to our original scheduled departure to transport some medication for Kyle that could not be mailed. Alex (and Sawyer) were happy to get down to beautiful Bahamas a few days earlier. Brandon, Kyle's older brother, also decided to visit a little earlier than planned, so we jumped on a flight together. Kyle knew that I would be coming, but we kept Brandon's early departure a secret.
When we arrived in Freeport, Vanessa and my two girls picked Brandon and I up from the airport. The weather was a welcome change from snowy Toronto. Driving through Freeport, I couldn't help but think about Kyle and Vanessa's journey to get here. Freeport is a nice place, but it definitely had to be intimidating to come down to an unfamiliar place to receive this alternative treatment. It has always amazed me to see Kyle and Vanessa navigate through this challenging path to find a treatment that works for Kyle. It takes a lot of persistence and will.
We arrived at the house where Kyle and Vanessa have settled since being in Freeport. I'm relieved to see (for Kyle and Vanessa) that the place is very nice and comfortable. When they first arrived in Freeport they stayed at a hotel, which you can imagine would be challenging on many levels. especially since kyle isn't really able to get out much these days, even to a restaurant for dinner can be a struggle for him. It has become much easier for Kyle and Vanessa to get acclimated and into a routine, being in their own place, with their own kitchen and all the necessities. A slow pace and a good place for Kyle to focus on his recovery.
It had been a couple months since I had last seen Kyle and I wasn't sure what to expect. He had written my an email prior to my trip explaining that he wasn't feeling well, the pain was intense, and it was scary for him to now be able to see and feel his tumours. With the exception of some discolouration in Kyle's hair, he looked like the same old Kyle. Tanned and thin...close to passing for a local Bahamian.
Brandon decided to wait behind outside to set up the surprise. We pretended that Connor (their dog) had gotten outside and was lost. Kyle went outside to try and find Connor. From inside I could hear Brandon in a fake voice say "is anyone looking for a dog?" It took a second for it to register, but once Kyle realized who it was, it was a really cool moment. Brandon and Kyle are extremely close and I think it was a real boost for Kyle to see his older brother.
We settled in and had a great meal together while watching the hockey game, which ky really enjoys since it provides some resemblance of normalcy. It was fun sitting back and watching Brandon and Kyle watch their Leafs together (albeit with blind optimism, go Habs go).
Staying with Kyle and Vanessa really gave us a sense of how they are managing day to day (which I know a lot of family and friends are curious about). It is tough to understand the depths of Kyle's pain, because he does a good job concealing it. Toughness comes in a lot of different forms, and Kyle has always had a quiet toughness about him. I remember playing JR lacrosse with Kyle and getting shoved into the back of Kyle's leg. I heard a pop. I thought that I had broke his ankle, but Kyle didn't react, not a peep. He quietly hobbled off to the bench to receive attention from the trainer. It ended up being a major ankle injury. Most people would be screaming or flailing around. Seeing Kyle go through this fight, reminds me of that time. He takes the pain quietly, not looking for attention or sympathy. While at the house, when Kyle was experiencing pain, he would discreetly duck away to his room.
Kyle has been doing a lot of meditation and relaxation exercises to help manage with his pain when the pain medication isn't working. The meditation seems to really help - It allows him to take his mind to another place, away from the pain.
Brandon and I tagged along to the clinic for one of Kyle's treatments. It was good to sit in and listen to Kyle's doctor, Dr. Bethal explain how Kyle is responding to the treatment and understand what his treatment plan would be moving forward. The treatment he is on - Coley's toxins is used to trigger a high fever which ignites the immune system and forces an attack on the tumours. this treatment has proven its success for other sarcoma patients, and it appears it may be helping Kyle. Dr. Bethel, quiet and understated, seems like someone Kyle and Vanessa can trust, which is a huge factor.
The fevers are intense. It has to be tough for Kyle to receive the treatments knowing what the reaction will bring. As Brandon put it, it is basically like asking someone to give you a swift kick in the junk in the hopes that it will make you feel better. We weren't even home 10 minutes before the fever had started. Deep, heavy shivers---not easy for us to see Kyle in that state.
Despite the intensity of Kyle's treatment that day, he still managed to keep us laughing. Earlier in the day when I was introduced to Dr. Bethel, he assumed that I was Kyle's brother and thought we looked alike. When we got home and while kyle was in the midst of the intense treatment Kyle looked visibly upset. Vanessa asked if everything was ok and Kyle replied that he was feeling fine, but upset that the doctor thought that he looked like me!! I was happy to see that Kyle hasn't lost his sarcastic humour!
It was encouraging to see Kyle later that night after the fever had calmed down. It seemed like he was able to manage the treatment better than his first few treatments that left him bedridden for a couple days.
Although Dr Bethel seems to think the Coley's treatment is benefiting Kyle, we all thought it was a good idea to start forming a backup plan in the event Kyle needed to start on something new. Kyle and Vanessa decided to have a phone consultation with Dr. Rosenberg in Florida, who is the director of the Integrative Cancer Association and has a lot of experience in treating patients with Coley's and other alternative treatments Kyle is considering. As we've heard before, Dr Rosenberg explained that it will not be one or two treatments alone that will cure Kyle, especially because his disease is so aggressive we need to come up with a plan that targets the cancer from many angles. Coley's may be one of them, but in his opinion it isn't going to be enough. Everyone is different and responds to cancer treatment differently, but generally with stage IV cancers, an aggressive approach is necessary. Dr Rosenberg's first recommendation was that Kyle should go back on some sort of chemotherapy - low dose (otherwise known as insulin potentiation therapy IPT) he said would probably be the safest approach for Kyle at this point, considering his current state. Low dose chemo gives the effect of full dose chemo but only uses 10-15% the regular dose in combination with insulin, glucose and other nutritional agents, which potentiate the chemotherapy's effect and make it as effective or even more effective than the traditional approach.
Before starting chemo, as other doctors have recommended in the past, Dr. Rosenberg suggested Kyle have chemo sensitivity testing done using a sample of tissue from one of the tumours in his chest (the testing can be done from a blood test using the circulating tumour cells in the blood, however it's much more accurate to do the test using live tissue). As you know, a few weeks ago Kyle had a biopsy done at the Freeport Hospital and the wheels are in motion for Kyle to start on new treatment ASAP.
I know Kyle and Vanessa love hearing from people back home. Words of encouragement and support go a long way, especially going through this so far from home, which I'm sure can get a little lonely and isolating. Being around Kyle and Vanessa was inspiring and reinforces a belief that there is light at the end of the tunnel and Kyle will Beat this again!
Visit www.kylemiller35.com to find ways to support Kyle. Good time to pick up a new winter toque!
We arrived home from the hospital at around 5pm this evening. Kyle was exhausted, as was I, so we took a well deserved nap. He got up at about 9:30 and is moving around much better than when he left the recovery room this afternoon. He has a lot of pain in his upper chest where the tumour was removed, so hoping things will start healing quickly and he starts to get some relief from the pain. He'll have the day off from treatment tomorrow so he can get lots of rest and work on getting his energy back up. As I mentioned earlier, I only spoke with the surgeon briefly after the surgery, but he said he was quite surprised about the depth and size of the tumour; they anticipated it would have been much closer to the skin and a bit larger. He said everything went as planned and he was able to get more than the required amount of tissue to send off to the lab for testing , which is great news since the number of chemo drugs they will be able to test against Kyle's tumour, depends upon the number of cancer cells in the tissue sample. However, just because they were able to remove lots of tissue, doesn't necessarily mean there will be tonnes of cells in it...there could be 1 or 2 or could be 30...we'll know more once the tissue arrives at the lab in California tomorrow. That's all for now...we'll try to keep the mini-updates coming on a more regular basis. Thank you for all of your support! Love,
We arrived home from the hospital at around 5pm this evening. Kyle was exhausted, as was I, so we took a well deserved nap. He got up at about 9:30 and is moving around much better than when he left the recovery room this afternoon. He has a lot of pain in his upper chest where the tumour was removed, so hoping things will start healing quickly and he starts to get some relief from the pain. He'll have the day off from treatment tomorrow so he can get lots of rest and work on getting his energy back up.
As I mentioned earlier, I only spoke with the surgeon briefly after the surgery, but he said he was quite surprised about the depth and size of the tumour; they anticipated it would have been much closer to the skin and a bit larger. He said everything went as planned and he was able to get more than the required amount of tissue to send off to the lab for testing , which is great news since the number of chemo drugs they will be able to test against Kyle's tumour, depends upon the number of cancer cells in the tissue sample. However, just because they were able to remove lots of tissue, doesn't necessarily mean there will be tonnes of cells in it...there could be 1 or 2 or could be 30...we'll know more once the tissue arrives at the lab in California tomorrow.
That's all for now...we'll try to keep the mini-updates coming on a more regular basis. Thank you for all of your support!
Love,K & V