If you are a regular reader of the blog, you will know that the run up to a hospital appointment is always a bit stressful, so we try to find plenty to do to distract us. This time we didn't have to go looking for a distraction - it came to us big time.....Flooding!
River levels have been rising steadily since Christmas, so it wasn't unexpected. We were in the middle of a party when the phone rang with the automated Flood Warning message to take action but we carried on partying anyway, as you do....However, there have been two flood-related deaths in Oxford since then and we have had to take it seriously.
We live on a short cup-de-sac to the west of Oxford City centre. At one end of the street is the main (and only) road into Oxford from the west. At the other end of the street, a bridge crosses a small stream into a park.
It's not unusual for the park to flood during prolonged periods of heavy rain - it's part of the Thames flood plain. But it doesn't usually stay flooded for long. This time, the park has been underwater since 3 January and the water has been getting deeper and deeper since then. The flood gauge in the stream has been completely submerged for several days and you can't tell where the stream ends and the park begins....
At the other end of the street, the main road has been closed to traffic for two days now because of flooding which is quite deep in places. Too deep to drive through safely unless you have a big vehicle or four wheel drive.
Some nearby residents have been evacuated and others have lost power supplies. Thankfully our street is still OK for now but on a shrinking island of dry land surrounded by flood water.
River levels are expected to peak tomorrow, so if we survive that long we should be OK. However, we are prepared with sandbags downstairs ready to deploy if needed and flood kit (torch, matches, candle, drinking water, fully charged mobile, wells etc) upstairs just in case....
With all this going on, we didn't get round to sitting down to talk to each other about Steve's next steps in treatment options until yesterday afternoon.
Although there are more drug trials currently recruiting in the UK than there have been recently, when we looked at these in more detail we found that Steve was excluded from many as they are specifically targeted at people who have not had chemo before, rather than long term survivors with one or more chemo regimes under their belts.
There are other trials which look interesting but they specifically exclude people with a medical history of autoimmune diseases like arthritis - which means Steve can't take part.
That left one possible trial in London (ADI-PEG 20) which is only open to people who are ASS negative (google "Arginine" if you want to read the science bit), so we wouldn't know if Steve met the criteria until a biopsy was done, and even then he might be randomly allocated to the placebo group.
The other trial is recruiting here in Oxford, as well as Cambridge and Manchester. It's called VanSel and is looking at two new drugs called Vandetanib and Selumetinib. These are biological therapies which block some of the proteins which tell cells to grow and divide.
So we knew that these were the ones to focus on at our meeting with the consultant this morning, assuming we could get there. Luckily, the flood waters on the main road were not too deep to paddle through in our wellingtons, although it was a bit tight when the occasional local car and emergency vehicle went by, creating waves...However, we made it to the rail station and took a taxi up to the hospital which is on higher land. We were the only people there wearing wellies....
Although it was a long (hour +) wait for Dr T, it was worth it. He tells it like it is, but his manner is relaxed and reassuring. He knows we have done our research so doesn't talk down to us. He knew what we wanted to talk about so it was straight down to business.
The VanSel trial is still recruiting, but not for much longer. It's a Phase 1 study so everyone gets the same treatment, but at escalating doses. The two drugs complement each other. Vandetanib is a Tyrosine Kinase Inhibitor (TKI) while Selumetinib is a MEK inhibitor. In simple theoretical terms, one drug blocks two pathways into the cell. When the cancer tries to find am alternative route into the cell, this pathway is blocked by the other drug. The study is to see whether the two drugs work this way in practice, establish the optimum dose and learn more about the side effects.
The drugs are given in tablet form - so no hours on end hooked up to a cannula and drip! Weekly hospital visits for the first two months, then monthly thereafter. Because it's a study rather than a drug trial with an end date, people can carry on taking the tablets for as long as they work (i.e condition stays stable) and the side effects are manageable. One man in Oxford has been doing it for a whole year now! You can read more about VanSel1 by clicking here
Steve has decided to go for it, if they will have him. There are still protocols to go through. We have to read a detailed information sheet, then assuming he still wants to go ahead, we'll get an appointment to go in and sign the consent forms. Then he will have the tests to make sure he's fit enough (physical exam; eye test; blood and urine tests; an ECG i.e. heart trace; heart ultrascan; chest X-ray and CT or MRI scan and maybe a bone scan). If all that's OK, he will then have to wait for a slot to be come available....
So we still don't know for sure that he will be able to take part and if so, when it will begin. However, the ball has started rolling which feels good!
Two other things worth mentioning from this morning ....
Today's X-ray shows no sign of any change since October's scan. Dr T doesn't consider the new lymph node nodule significant; pleural thickening is still minor and the tumour has no great bulk, so "de-bulking" is not something we need to think about for the time being.
The other thing is good news for other meso patients and cancer patients generally! Grant applications by Oxford and Stanford Universities have been successful to fund a trial in the autumn for a new drug (HU5F9G4) with a novel cancer target CD47. The function of this cancer target is well known (it's found in all cancer tumours, apparently). The early stage testing of the drug to be trialled has shown it to be very active in tumour control. The trial is going through all the protocols at present but should be up and running in the third quarter of 2014. The downside for us is that Steve would not meet the draft eligibility criteria as it excludes people with a medical history of auto-immune diseases. However, it sounds like a very exciting development for other cancer patients - and not something under the control of the big drug companies, which has got to be good news!
We came out of today's meeting feeling almost light-hearted, in spite of the continuing threat of flooding. I think you can see it on Steve's face :-)
I am just happy with my new purple wellies - the last pair of size 5 available in Oxford yesterday!
I'll keep you posted on what happens next, flood wise and on the VanSel front. Keep your fingers crossed for us tonight and tomorrow.
If you want to know more about the flooding in Oxford, the local papers are running a daily blog with flood updates every 30 seconds (tick the box). New blog every day. Access today's blog by clicking here There are lots of pictures, including a couple of mine, and a video (if you ever need to know how to make a sandbag!)
River levels have been rising steadily since Christmas, so it wasn't unexpected. We were in the middle of a party when the phone rang with the automated Flood Warning message to take action but we carried on partying anyway, as you do....However, there have been two flood-related deaths in Oxford since then and we have had to take it seriously.
We live on a short cup-de-sac to the west of Oxford City centre. At one end of the street is the main (and only) road into Oxford from the west. At the other end of the street, a bridge crosses a small stream into a park.
It's not unusual for the park to flood during prolonged periods of heavy rain - it's part of the Thames flood plain. But it doesn't usually stay flooded for long. This time, the park has been underwater since 3 January and the water has been getting deeper and deeper since then. The flood gauge in the stream has been completely submerged for several days and you can't tell where the stream ends and the park begins....
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| Yesterday at the entrance to the park (the remaining grass is under water now) |
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| Yesterday - today you can't see it at all! |
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| The playground two days ago - the benches and picnic table are now under water, as are the seats on the swings below |
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| The water at the main road entrance to the park is even higher now... |
At the other end of the street, the main road has been closed to traffic for two days now because of flooding which is quite deep in places. Too deep to drive through safely unless you have a big vehicle or four wheel drive.
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| Before the main road was closed to through traffic |
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| Note : the lorry is delivering spring water! |
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| Today - you can walk in the middle of the main road, but the water is deeper at the sides |
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| High tide at Botley Road earlier today |
Some nearby residents have been evacuated and others have lost power supplies. Thankfully our street is still OK for now but on a shrinking island of dry land surrounded by flood water.
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| This is where we rent a garage where we have stored things while refurbishing the house. The water has now breached the sandbag wall to the right and local residents have been evacuated. Needless to say, the garage is well and truly flooded. An extreme way to declutter! |
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| The park on the south side of the main road, with one lonely car stranded |
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| The local allotment gardens were an early victim of the floods - the Thames runs along one side |
With all this going on, we didn't get round to sitting down to talk to each other about Steve's next steps in treatment options until yesterday afternoon.
Although there are more drug trials currently recruiting in the UK than there have been recently, when we looked at these in more detail we found that Steve was excluded from many as they are specifically targeted at people who have not had chemo before, rather than long term survivors with one or more chemo regimes under their belts.
There are other trials which look interesting but they specifically exclude people with a medical history of autoimmune diseases like arthritis - which means Steve can't take part.
That left one possible trial in London (ADI-PEG 20) which is only open to people who are ASS negative (google "Arginine" if you want to read the science bit), so we wouldn't know if Steve met the criteria until a biopsy was done, and even then he might be randomly allocated to the placebo group.
The other trial is recruiting here in Oxford, as well as Cambridge and Manchester. It's called VanSel and is looking at two new drugs called Vandetanib and Selumetinib. These are biological therapies which block some of the proteins which tell cells to grow and divide.
So we knew that these were the ones to focus on at our meeting with the consultant this morning, assuming we could get there. Luckily, the flood waters on the main road were not too deep to paddle through in our wellingtons, although it was a bit tight when the occasional local car and emergency vehicle went by, creating waves...However, we made it to the rail station and took a taxi up to the hospital which is on higher land. We were the only people there wearing wellies....
Although it was a long (hour +) wait for Dr T, it was worth it. He tells it like it is, but his manner is relaxed and reassuring. He knows we have done our research so doesn't talk down to us. He knew what we wanted to talk about so it was straight down to business.
The VanSel trial is still recruiting, but not for much longer. It's a Phase 1 study so everyone gets the same treatment, but at escalating doses. The two drugs complement each other. Vandetanib is a Tyrosine Kinase Inhibitor (TKI) while Selumetinib is a MEK inhibitor. In simple theoretical terms, one drug blocks two pathways into the cell. When the cancer tries to find am alternative route into the cell, this pathway is blocked by the other drug. The study is to see whether the two drugs work this way in practice, establish the optimum dose and learn more about the side effects.
The drugs are given in tablet form - so no hours on end hooked up to a cannula and drip! Weekly hospital visits for the first two months, then monthly thereafter. Because it's a study rather than a drug trial with an end date, people can carry on taking the tablets for as long as they work (i.e condition stays stable) and the side effects are manageable. One man in Oxford has been doing it for a whole year now! You can read more about VanSel1 by clicking here
Steve has decided to go for it, if they will have him. There are still protocols to go through. We have to read a detailed information sheet, then assuming he still wants to go ahead, we'll get an appointment to go in and sign the consent forms. Then he will have the tests to make sure he's fit enough (physical exam; eye test; blood and urine tests; an ECG i.e. heart trace; heart ultrascan; chest X-ray and CT or MRI scan and maybe a bone scan). If all that's OK, he will then have to wait for a slot to be come available....
So we still don't know for sure that he will be able to take part and if so, when it will begin. However, the ball has started rolling which feels good!
Two other things worth mentioning from this morning ....
Today's X-ray shows no sign of any change since October's scan. Dr T doesn't consider the new lymph node nodule significant; pleural thickening is still minor and the tumour has no great bulk, so "de-bulking" is not something we need to think about for the time being.
The other thing is good news for other meso patients and cancer patients generally! Grant applications by Oxford and Stanford Universities have been successful to fund a trial in the autumn for a new drug (HU5F9G4) with a novel cancer target CD47. The function of this cancer target is well known (it's found in all cancer tumours, apparently). The early stage testing of the drug to be trialled has shown it to be very active in tumour control. The trial is going through all the protocols at present but should be up and running in the third quarter of 2014. The downside for us is that Steve would not meet the draft eligibility criteria as it excludes people with a medical history of auto-immune diseases. However, it sounds like a very exciting development for other cancer patients - and not something under the control of the big drug companies, which has got to be good news!
We came out of today's meeting feeling almost light-hearted, in spite of the continuing threat of flooding. I think you can see it on Steve's face :-)
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| Steve has found his way home through the floods |
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| And now he's thinking about going for a paddle in the park... |
I am just happy with my new purple wellies - the last pair of size 5 available in Oxford yesterday!
I'll keep you posted on what happens next, flood wise and on the VanSel front. Keep your fingers crossed for us tonight and tomorrow.
If you want to know more about the flooding in Oxford, the local papers are running a daily blog with flood updates every 30 seconds (tick the box). New blog every day. Access today's blog by clicking here There are lots of pictures, including a couple of mine, and a video (if you ever need to know how to make a sandbag!)
Posts
Here's hoping the flood waters stay at bay- good to know about the extra research funds and look forward to hearing about the trials. Fingers crossed
ReplyDeleteAmanda