Kyle Miller
A small sigh of relief
by Kyle & Vanessa on 05/03/12
Today we met with Dr. Blackstein for our scheduled follow up appointment to get the results of Kyle's MUGA scan (test performed last week to test Kyle's heart function). Much to our surprise, more good news was delivered all around! It turns out that there hasn't been much damage to Kyle's heart at all since he started chemo back in October - a slight decrease in function was noted by the radiologist who reviewed the scans, but nothing considerable.
Dr. Blackstein said he could continue with Doxorubicin treatments, however casually in our conversation he briefly mentioned an alternative that he thought we may want to consider. He told us there were two companies manufacturing this fairly new composition of Dox called liposomal doxorubicin - brand names Myocet and Caelyx. He explained that what these manufacturers have done is essentially used the identical drug, doxorubicin and placed it in a sack that when transmitted would protect Kyle's heart and other organs from damage. Since this alternative that we MAY want to consider sounds like it may be our dream drug, we are astonished as to why we have never heard of this option anytime over the past 6 months (surprisingly we also never came across it in our own research...totally dumbfounded by this one). Well, it turns out that possibly it was never mentioned because of the cost - approx. $5000 per dose of Myocet/Caelyx vs. $100 Doxorubicin. Also, since these drugs have not been approved for use in the treatment of Sarcoma (only approved in Canada for ovarian cancer and a certain type of lymphoma) OHIP - Our provincial health care system - likely won't foot the bill, and we guess Dr. Blackstein assumed we wouldn't be interested in paying for it!? We're still trying to figure that part out. Anyway, Dr. B feels confident this is the right direction to go since the last CT scan indicated Kyle's tumours decreased in size, which means Doxorubicin was working. At the same time we all agree we want to minimize any potential risks...we don't really need any more problems right now!!
Getting our hands on one of these drugs may pose a bit of an issue due to distribution and availability in Canada; however the pharmacist at Mt. Sinai, Marcia (who is SO amazing) is on the job - shes contacted the manufacturers, pharmaceutical reps and anyone who will listen. Also, I've been in touch with Kyle's private insurance company to inquire about coverage since we will likely have to pay for the drug once it's located...although that doesn't look too promising.
We've taken a small sigh of relief after all the good news today...we pray our journey will continue on a positive route and the new plan will come together for us in the coming days. We should know the status of whether Marcia is able to locate one of the drugs by Friday. We will meet with Dr. B again next Wednesday and hopefully Kyle will be back on his way to recovery.
We'll be in touch soon...
Vanessa
xo
Rollercoaster ride
by Kyle & Vanessa on 04/25/12
There are a couple things going on over here that I thought I would update you all on tonight. As I mentioned in my post earlier in the week, Kyle had a few tests this week in addition to an appointment this morning with Dr. Blackstein. A CT scan and MUGA scan were done before our appointment so Dr. B could assess Kyle's progress after two treatments of Doxorubicin. We have some good news, and some potentially not so good news to report...
After 6 long months of chemo and a lot of pretty crappy news, Kyle's stubborn little (well, not so little) tumours have FINALLY started to respond to chemo! On the radiologists' report, they noted that Kyle's main tumour has decreased in size by 7%!!! YES, this means that Doxorubicin is working!! Dr. Blackstein thought that a decrease of 7% was pretty substantial after only two treatments. Of course we were very pleased to get the news...however there is still a chance we may have to continue our search for new treatment.
The potentially not so good news - before starting Dox we were warned of the possible side effect that this drug could have on Kyle's heart function. Well, the MUGA scan, which was done early this morning, showed that Kyle's heart has seen better days. Back in October his heart function was at 64%, today it was 47%, however the accuracy of this value needs to be verified by a radiologist (Dr. B explained that this value was just a quick measure done by the technician and often the values change and become more accurate once reviewed by the radiologist).
So the waiting game continues...we have to wait until next Wednesday, May 2nd to get a final report on the MUGA scan and determine the next steps, if any with Dr. B. In the meantime, we will continue to investigate alternatives so we are able to make an informed decision next week. We have mixed feelings about the news...it's exciting to think Kyle's answer to a cure could be within reach, but incredibly frustrating that his heart may stand in the way of continuing with treatment. Regardless of what happens next week we believe that if Dox isn't the man for the job, then there's something else out that we can substitute it with.
What a rollercoaster ride this journey has been, to say the least...filled with ups and downs, turns and zig zags all over the place! I must tell you that Kyle appreciates your support and on many days he is fueled by your actions, words, acts of kindness and generosity. Sometimes it's a close friend or family member, a quick message on Facebook, or often he'll get an email from a complete stranger telling him about how inspirational he is and encouraging him to Beat It...he feels a team behind him and know that you play an important role in helping him to keep up the fight every day...he absolutely couldn't do it without you (and Connor, of course)!
Talk soon,
Vanessa
xo
Alternative Route
by Kyle & Vanessa on 04/22/12
The last time we spoke, life was pretty good for us. We had a great time on our road trip down south...Kyle's pain was manageable, he was relaxed and had a surprisingly good amount of energy for the most part. Since then I must admit, things aren't exactly going to plan...as Dr. Blackstein told Kyle at our last appointment, he needs to start playing by the rules. I apologize in advance for the length and amount of detail in this post; feel free to skip over my babbling wherever necessary!
We got home in time for Kyle's second round of chemo, (Doxorubicin) which took place on April 4th. We met with Dr. Blackstein that morning, as we usually do before chemo. He didn't have too much to say since he hadn't ordered a CT scan between treatments, although he did say he was a bit disappointed Kyle was still in pain and that he expected Kyle would be 'dancing' after this next round of chemo. If there isn't a major improvement in pain and the tumours haven't decreased in size on his next CT scan, Dr. B told us we would have to seriously sit down and come up with a new plan (It's too risky for Kyle to continue on Dox if no improvement is seen after two treatments, considering the potential damage to his heart).
Dr. B shared one piece of encouraging news with us about the results from an MRI Kyle had done in March. The radiologist reported that the tumour surrounding Kyle's subclavian and vertebral arteries (which has been the main concern that has prevented him from having surgery) appears to be farther away from the arteries than seen on previous CT scans. Dr. B suggested we make an appointment with Kyle's surgeon, Dr. Waddell to see if he felt this new piece of evidence would encourage him to operate on Kyle.
The effects of chemo that week weren't too bad; a bit of nausea and lack of energy, but nothing out of the ordinary to report. It's been almost three weeks now since Kyle's 2nd treatment and unfortunately he hasn't asked me to dust off his dancing shoes as of yet.
On Monday, April 16th, we went to see Dr. Waddell. Kyle was very nervous about the appointment and told me he had a feeling we would be getting bad news that day. I tried to stay positive and was really looking forward to hearing him tell us he could operate on Kyle.
Dr. W's review of the MRI wasn't as we hoped; although the tumours appear to be farther away from the artery on the images than previously indicated, he has major concerns about the efficacy of this scan since Kyle is still in tremendous pain. Apparently the scans are not an exact science and given that Kyle's pain is still present, he feels it's too risky to perform surgery. Dr. W also gave us some shocking news - the most recent CT scan which Kyle had done before starting Doxorubicin in March, showed that his cancer has metastasised from his left to his right lung. The new mets pose more problems and make an operation even more complicated than ever (in fact if he were to take the risk in operating, it would have to be done in two stages - they cannot operate on both lungs at the same time).
As you can imagine, this was very upsetting and difficult news to receive. Beyond the feelings of fear, anxiety and sadness we felt very angry that this was the first time we were hearing of the new tumour developments, especially since Dr. Blackstein had read the radiologists report, viewed the scans himself and for some reason did not inform us of any new metastases - he told us Kyle's tumours were unchanged.
We weren't prepared for this kind of news...we asked Dr. Waddell what he thought the next step should be but he didn't have much advice to offer. He told us that he doesn't think Kyle's disease is curable - he said even if he were to operate and somehow remove all of the cancer, that within months it would be come back again. Yet when I told him in a very frustrated state that we weren't just going to sit around and give up, he said he didn't think we should (not sure what to take of that!?) Dr. W said he would be willing to look at Kyle's next CT scan and re-evaluate, however he didn't predict the results would be promising...really encouraging!
From the hospital on Monday we dragged ourselves home...as you can imagine we cried, kicked and screamed, broke some stuff and then after a while, pulled ourselves together. After a big discussion and hours of research we decided that we would start to consider some 'alternative' options more seriously, since the conventional route doesn't seem to be working out as expected and there doesn't seem to be too many options out there.
On Friday, April 20th we met with Dr. Vlade Gagovski, a medical doctor who runs a private cancer clinic in the east end of Toronto. He was referred to us through a nurse who worked at a clinic that my dad was treated at over 20 years ago when he was diagnosed with cancer. Although my dad's doctor, Dr. Faulk since passed away of an unrelated condition, Dr. Gagovski is performing similar alternative treatments as Dr. Faulk and is having success with cancer patients, some who have been given no hope from conventional medicine. Dr. G went over various treatments that he thought Kyle may benefit from. His recommendation was that before starting any treatment, with him or any other doctor, Kyle should consider having a chemosensitivity test done that may give us a better idea of some chemo drugs that in the lab are effective in killing Kyle's actual cancer cells (the lab in Germany would use Kyle's blood samples to test if cancer cells in blood are sensitive to a wide range chemo drugs - they test with all drugs, not only those typically used in the treatment of sarcoma). Go here for more information on chemosensitivity testing by Biofocus. (*Note this testing is different than the genetic testing we had done in January when we sent a sample of Kyle's tumour tissue to be tested for potential genetic markers that could be matched to various chemo drugs. That test only tested a limited number of genes, and unfortunately no matches were returned).
Once the results from the chemosensitivity test are back, Dr. G recommended that we consider a treatment at his clinic called Insulin Potentiated Chemotherapy (IPT - otherwise known as low dose chemo). In this process they would give Kyle 10% -20% the regular dose of chemo along with Insulin and glucose - the effect of this combination is supposed to be equivalent or even more effective than a regular dose of chemo. Another pro is that Kyle wouldn't suffer all of the negative side effects of regular full dose chemo, which will help to keep his body and immune system strong. Go here for more information on IPT.
In addition to the treatments Dr. G offers at his clinic, he told us about a therapy he knows of only available at a private clinic in Prien, Germany called Immunepheresis. He explained simply the treatment uses a pump like system (similar to dialysis) to flush the blood stream to remove particular inhibitors or stems that cancer cells develop to protect themselves from being destroyed. After the body is flushed the power of the body's immune system has the potential to attack and shrink tumors very rapidly. Dr. Lentz, an American Oncologist who developed the therapy and runs the clinic in Germany claims the technology can be more powerful than chemotherapy. What sparked our interest with this treatment in particular was that Dr. G told us about a young patient that he knows of (11 year old boy) diagnosed with Ewing's Sarcoma (similar to Kyle's diagnosis) that is being treated at the clinic. Apparently he is having a lot of success with Immunepheresis and has successfully reduced the size of his tumours considerably as a direct result of this treatment alone. My father who attended the appointment with Dr. Gagovski with us will investigate the treatment further and contact the clinic over the next few days...we also hope to get the opportunity to contact this particular patients family to get a first hand report of the clinic and their progress. If you would like to read more information on the Immunepheresis treatment click here.
We recognize that there are several potential cons to treatments/tests such as chemosensitivity testing, IPT and Immunepheresis. Not only are they highly controversial and don't have the standard 'clinical studies' to backup their claims, they are only available through private clinics, which means they are very, very expensive (IPT treatment runs about $1200-$2000/week, Immunepheresis cost is astronomical at $4000/treatment (per day) - Kyle would need to go to Germany for 12 consecutive treatments at a time). However, at this point we need to weigh out the pros and cons of each treatment, educate ourselves as much as possible and ultimately Kyle needs choose a direction that he's comfortable with and believes in. We felt that Dr. Gagovski was very open and honest and did not try to push or sway Kyle to treatments that were self-serving or profitable, but he was merely a source of good information.
Moving forward, Kyle will still go for his scheduled CT scan at Mt. Sinai on Monday evening and we will go in to meet with Dr. Blackstein to discuss options on Wednesday (although we expect he will disagree with and discourage an alternative route). We have decided to hold off on chemosensitivity testing until next week once we see the results from the CT and have all the facts. It's clear that there are tonnes of promising options to consider and again we are doing our best to evaluate everything possible to make the next move a good one. As always we appreciate all of your love and support. I hope to be in touch soon with a game plan and who knows, maybe even some good news!
Love always,
Vanessa
While I breathe, I hope
by Kyle & Vanessa on 03/22/12
Since our last update, things have been a bit up and down, but overall Kyle is pretty stable and doing ok. Although his pain was at an all time high over the last few weeks, he's managing better now with the pain meds and through acupuncture treatments that he's been receiving three times a week at a clinic in Richmond Hill.
I'm writing this update from South Carolina...Kyle and I decided to take a last minute, much needed vacation/road trip down south for a couple of weeks while he has a break in chemo. From here we're headed to Tampa, FL to stay with friends for a few days.
Since it's been a while since my last post, I'll update you on what's been going on over the last month or so. As planned, Kyle continued with the Gemcitabine chemotherapy and had three additional treatments in February and beginning of March. Two weeks ago he had a CT scan done which revealed that again there has been no change in the size/density of his tumours. Dr. Blackstein acknowledged the positive in the fact that Kyle's tumours haven't increased in size and that his condition has remained stable, although its essential we find a chemo that shrinks his tumours before surgery becomes a safe option. Dr. B recommended we stop Gem and start new treatment right away. We discussed the pros and cons of two drugs at length; Yondelis and Doxorubicin. Dr. B recommended we 'go for broke' and start Doxorubicin immediately.
After consulting with Dr. B and hearing what he had to say, we still weren't convinced. We decided to call Dr. Wunder, Kyle's orthopedic oncologist (surgeon who did Kyle's surgeries in the past) to get his opinion and hoping he would have something insightful to bring to the table. After a long discussion, Dr. Wunder agreed that this was a tough and complicated decision and told us that although he has all the faith in the world in Dr. B, he would call down to some of his colleagues in the US to get their opinions on Kyle's case. He spoke with an oncologist in Houston, TX at MD Anderson Cancer Centre and one at Sloan Kettering Cancer Center in New York. Both doctors agreed that although there are some risks for Kyle to take Dox, considering his history, they believe this drug has the greatest potential to shrink his tumours.
Hearing that all three doctors were on the same page was a clear indication to us that we should take the Dox route...we decided to go ahead and start Doxorubicin Wednesday of last week. It was a long day of tests and mainly waiting around, but once they got going it was a pretty quick treatment...only about an hour from start to finish. The drug was administered along with a drug called Dexrazoxane which is supposed to help protect his heart from damage as a result of the treatment.
The plan going forward is to continue with two additional Dox treatments, one every three weeks (next treatment scheduled for April 6th). After the second treatment, Dr. B plans to do a MUGA scan which is a test that determines the strength of the heart (as you know since Kyle's had his 'maximum lifetime dose' of Dox, there is a risk the drug could deteriorate the heart muscle, therefore a MUGA scan will show them if there has been any further deterioration as a result of the treatment and how much more he can take, more or less).
As I mentioned earlier, in conjunction with chemo Kyle has been seeing Dr. Ngui, a Traditional Chinese Doctor for acupuncture treatments over the last several weeks. Since Kyle was diagnosed in October, he's been pretty skeptical of doing any 'alternative' treatments, but since his pain was getting so bad, he agreed to give it a shot. Dr. Ngui was referred to Kyle through a friend who told us he was making amazing breakthroughs with cancer patients. We did some research and found some impressive findings on Dr. Ngui, who often works with cancer patients that have been given no hope by western medicine. After being treated by him, many of these patients have not only experienced a decrease in pain, but many are living cancer free. He told us his success rate is about 90%, which includes the patients who come to him after western medicine has failed. Going into this experience our main objective was really only to get Kyle some pain relief, however after seeing an improvement in pain (while he's at the clinic he virtually feels no pain at all), we believe Dr. Ngui may have potential to really help Kyle. Since we couldn't bring Dr. Ngui on vacation with us, he put these bandages with mini needles in them on Kyle so he would continue to receive the benefits of acupuncture while we're away...we'll continue to see him when we get back.
I think that should bring you all up to date for now. We're really enjoying our time away and are so grateful that we have this time to spend together while he's feeling pretty well. I think being away from everyday life has been a good way to de-stress, focus and start the healing process. Funny enough, we learned today that the motto of the state of South Carolina is 'While I breathe, I hope.'
Vanessa
A different perspective
by Kyle & Vanessa on 02/08/12
It's been a long week down at Mount Sinai. Since my post earlier today, there's quite a bit to update you all on (the previous post was actually written Monday, my apologies for not getting it up sooner).
When we met with Dr. Blackstein on Monday, once he returned back from vacation, he gave us a much different (and more positive) perspective on Kyle's case. Although the radiology report from Kyle's ct-scan last week indicated that the smaller size tumours in Kyle's lung had increased in size, Dr. B told us he's not ready to throw in the towel on Gemcitabine. After reading the scans himself, he believes that the overall progression of Kyle's disease has not increased and from his point of view, the large tumour in Kyle's lung has actually decreased in size, regardless of what radiology reported. He also noted that he isn't ready to assess the size increase of the smaller tumours because it is difficult to accurately measure and compare the tumours from previous scans, due to the fluid in his lung that has since dissipated.
Hearing what Dr. B had to say gave us an unexpected glimmer of hope and positivity. Later that afternoon, however we had an appointment with Dr. Waddell (thoracic surgeon) who said he more or less agreed with radiology's assessment. Though he didn't think Gemcitabine was working, his 'window' to operate on Kyle if completely necessary has not changed (if Kyle absolutely needed to have surgery, for example to participate in a trial which required him to have the operation prior to enrolment, Dr. W said it can likely be done...he just doesn't believe that it will cure the disease). After hearing Dr. W's differing opinion, a new great sense of confusion and anger was developed by me, Kyle, and his family. How could three such qualified professionals come to such inconsistent conclusions?!
As you can imagine we were in a difficult position. Although we have the utmost respect and confidence in Dr. Blackstein, it was a big decision. After another meeting with Dr. B yesterday afternoon (Feb 7th), Kyle decided that he would like to continue with two more rounds of Gemcitabine (chemo scheduled for today and Feb 22nd) followed by another ct scan, the week of February 27th. We're continuing to look into other treatments across Canada and the US as Kyle gives this chemo one more shot. If Gemcitabine turns out to be a dud, Dr. B told us there are two other drugs he would like to consider, prior to resorting to the trial group Dr. Gupta referred Kyle to last week.
Aside from all the ups and downs, Kyle is doing well and is really rolling with the punches! He's very tired and a bit nauseous this afternoon, but should bounce back within a few days. We plan to meet with the trial group at Princess Margaret next week and keep our options open moving forward...we'll keep you up to date on any news or developments that come about.
Vanessa
