It's Better in The Bahamasby Kyle & Vanessa on 12/16/12
We arrived in Freeport from Ft. Lauderdale almost two weeks ago. An update is long overdue...it seems we acclimatized to the Bahamian pace pretty quickly. Life is quite different here...no one seems to be in much of a rush to do anything or go anywhere. The first few days were an adjustment, to say the least...but now that we've relaxed a little, we're really enjoying our time here.
Our ferry ride from Ft. Lauderdale went pretty smoothly except of course for the boat ride itself, which was ANYTHING but smooth. Kyle and Kevin didn't seem effected by it, but I'd have to say it probably rates on my top ten list for one of the most terrifying and nauseating experiences of my life! I may never leave this island!
As I said, the first few days were a major adjustment for Kyle and I. When we arrived on Tuesday Dec 4th, we went to the clinic as planned to have Kyle's blood drawn for testing. We expected to see Dr. Bethel on Wednesday morning, but for whatever reason we didn't get in to see him until Thursday. When we finally met with the doctor, we discussed various immune based treatments that he thought we should consider for Kyle, in addition to the Coley's vaccine, which Ky had pretty much already decided he would start on immediately. Dr. Bethel gave Kyle his first dose of Coley's that afternoon.
We came up with a pretty good plan for Kyle to start out on, which consists of three different vaccines; Coley's, Heat Shock Protein (HSP) vaccine and the pneumococcal vaccine. I'll do my best to briefly explain how each treatment works...
Because of the way that the Coley's and pneumococcal vaccine's are being injected here (sub dermal - under the skin) they work with the dendritic cells within the body that lay directly under the skin which are typically unprogrammed for use until they're called into action (it's usually because of a small cut or bruise that activates these cells to heal a wound). The pneumococcal vaccine was designed for its use to prevent influenza and pneumonia. Because of this, when injected through the sub-dermal method the vaccine programs the dendritic cells to travel to the lungs (where pneumonia's are found) to clear up infection. Even though there is no pneumonia in Kyle's lungs, the cells are programmed to seek and destroy infection in the lung...the theory is that when it arrives in the lungs and finds tumour cells, it will destroy this 'infection'. Similarly, the Coley's vaccine, when injected by the sub-dermal method, programs the dendritic cells to work to destroy infection within the connective tissue of the body (since sarcoma cells are generally comprised of connective tissue, Coley's is thought to be most effective on these types of tumours).
The Heat Shock Protiens (HSP) vaccine is a customized treatment that was actually developed specifically for Kyle using samples of his urine. The idea behind the treatment is that HSP's are proteins produced within the body when cancer cells are stressed or dying. The theory is that if these proteins, which are excreted in the urine, are collected and made into a vaccine, they will stimulate the immune system to target and kill the cancer cells.
So as you can probably imagine, the treatment schedule has been and will be pretty intensive...each treatment will be given twice per week on altering days...which means he'll have one injection per day, six days per week (Mon-Sat). Additionally, Dr. Bethel started Kyle on a pretty hefty vitamin protocol, that includes two days per week of vitamin IV cocktails...this will help strengthen his immune system to help his body fight and destroy tumour cells as well as breakdown the tumours to make them more vulnerable to the other treatments.
For now, Dr. Bethel recommended Kyle continue on his medication, Votrient, since he doesn't feel there will be any contraindications with the treatments he's offering and this drug. The doctor isn't convinced Votrient is really providing any benefit to Kyle, but it's likely not causing any harm either...i.e. to his immune system, so he'd rather not rock the boat, and advised Kyle to continue taking it for now, even though Kyle really wanted to stop using it.
So far, Kyle's tolerated all of the treatments pretty well. He hasn't experienced any severe reactions to any of the vaccines, although after the second injection of Coley's he started to feel some pretty intense pain, about 4 hours after injection. At first we were pretty concerned...we spoke to the doctor that evening and he told us that many of his other patients have reported similar reactions. Although he sympathized with how Kyle felt, he explained that the reaction was actually a pretty good sign. He told us that even after only two treatments the Coley's has the potential to start killing tumour cells, which can cause inflammation...since Kyle's tumours are close to the nerves (particularly the one around his arteries in his neck), they are highly sensitive and even a slight increase of inflammation in that area would cause a significant increase in pain.
So, all in all, Kyle's pain hasn't been great as a direct result of treatment (he's been better in the morning, but in the evenings after treatment he's typically in a lot of pain), though it gives us hope and him the ammunition to bear the pain and continue on with the injections. In fact, we have already received a bit of positive news... nothing quantifiable at this point, but definitely encouraging! Before Kyle started treatment, Dr. Bethel performed a routine physical exam and used a stethoscope to listen to Kyle's breathing, heartbeat, pulse, etc. During the exam, he was pretty concerned about the lack of blood flow around the corroded artery (where Kyle has the tumour in his neck). He let me listen to the difference in sound from the left to right and even I could hear a remarkable difference...we could hardly hear any blood flow on the left side. This past Friday, about one week later, Dr. Bethel did another exam and listened to the same areas on Kyle's neck...he was stunned! And after listening for myself, so was I!! There is a distinct improvement in the amount of blood flow...the sound is still much weaker than the right side of his neck, but the marked improvement is likely an indication that the tumour in that area has decreased in size and is allowing more blood to flow through that artery, hence the louder sound.
They say, 'It's Better in The Bahamas' ... and so far, its proving to be! We're pretty excited about the direction and track we're headed in. We're still unsure of how long we'll have to stay down here, but it will likely be another couple of months so that Dr. Bethel is able to closely monitor Kyle and make changes to the treatment plan and dosage, as needed. We're planning to go back to Florida by ferry this coming Friday, the 21st, where we'll meet some family, including Connor to celebrate Christmas. We'll head back to Freeport on Dec. 27th to resume treatment. We're disappointed that we won't be back in Toronto to see all of our friends and family over the holidays, but we'll be thinking of you all and hope everyone has a very safe and Merry Christmas!
Love from The Bahamas,
Kyle and Vanessa xo