Fund raising poster pic.twitter.com/TQCnS7hNXL
— Lorraine Broadhurst (@SteadyEdina) March 26, 2014
Monday, 31 March 2014
Sunday, 30 March 2014
The Controversy of Avastin
Background
Avastin is the commercial name for a drug called Bevacizumab (pronounced bev-a-siz-you-mab). It was first given approval in 2004 to be used alongside chemotherapy treatments for Colon (Bowel) Cancer. It has also been used in the treatment of certain lung, kidney, brain and breast cancers.
Roche, the company that make Avastin, received approval from the EU for treating ovarian cancers. The approval was for its use in combination with chemotherapy for first line treatment (December 2011) and first recurrence (October 2012).
The FDA, which is the approving body in the USA, have not been asked to approve Avastin for use with ovarian cancers because of a lack of evidence that it extends life, even though it can extend progression free periods by a few months, and also over concerns of some of the side effects. The FDA also withdrew approval for the use of Avastin in breast cancers in 2011.
The purpose of this post is to explain what Avastin is, how it works and how it is funded. However not everyone in the UK has equal access to this drug.
How does Avastin Work?
Unlike traditional chemotherapy drugs that prevent cell division Avastin is a biological therapy that interferes with processes in the cell.
It works by stopping the growth of new blood vessels that are needed by the cancer cells for food and oxygen.
Therefore the tumours starve and start to shrink as the cells die off. Doctors call treatments that interfere with the development of a blood supply anti angiogenesis treatments.
The drug is given through a drip into the vein and for ovarian cancer it is given every 3 weeks.
Initially Avastin is given over 90 minutes, which is gradually reduced to 30 minutes if you do not have any problems with it.
Common Side Effects
More than 10 in every 100 people have one or more of these.
Avastin Trials for Ovarian Cancer (Source: Cancer Research UK)
The American GOG218 trial reported in June 2010 that Avastin with chemotherapy controlled advanced ovarian cancer for longer than chemotherapy alone. All the women in the trial had standard chemotherapy. Half of the women also had Avastin during the chemotherapy and then on its own once the chemotherapy had ended. Another large American trial reported in December 2011 and confirmed that adding Avastin to standard chemotherapy seems to control advanced ovarian cancer for about 4 months longer than chemotherapy alone.
In the UK a large, phase 3 trial called ICON 7 looked into whether adding bevacizumab to standard chemotherapy could lower the risk of ovarian cancer coming back after surgery. Between December 2006 and February 2009, 1528 women from Europe, Canada, Australia and New Zealand joined the trial. They all had ovarian cancer removed with surgery. Half the women had standard chemotherapy with carboplatin (Paraplatin) and paclitaxel (Taxol) every 3 weeks for 6 cycles of treatment and then no treatment until their cancer started to grow again. The other women had Avastin as well as the standard chemotherapy. When their chemotherapy finished they had 12 more doses of the Avastin every 3 weeks.
The research team found that combining Avastin with standard chemotherapy lengthened the time before the cancer came back for some women. But it didn't help the women live longer. Overall, women who had Avastin and chemotherapy had an average of 2 months of extra time without the cancer coming back or growing. Women who had a more advanced stage cancer to start with had the most benefit. Women in both treatment groups had some side effects. The most common side effect of Avastin was high blood pressure but this was easily treated.
The video above shows Dr Timothy Perren, from Leeds Teaching Hospitals NHS Trust being interviewed at European Society for Medical Oncology (ESMO) in 2010. At that time data for the overall survival (OS) figures from the ICON 7 trial were not available but were anticipated in 2012. The final results were presented at the European Society of Gynaecological Oncology (ESGO) meeting in 2013 . The data showed that women at highest risk of their cancer recurring lived on average 9.4 months longer than those who received chemotherapy alone.
Results of the ICON7, phase III clinical trial. Results of the ICON7, phase III clinical trial. ecancer.tv - Essential viewing for oncologists
The mEOC trial is comparing 2 different chemotherapy combinations with or without Avastin for a rare sub type of ovarian cancer called mucinous ovarian cancer. The doctors in this trial want to find out which chemotherapy combination works better to control cancer growth. And they want to find out whether adding Avastin to chemotherapy is a useful treatment for this group of women. Recruitment for the trial closed in August 2013 but the results have not yet been made public.
NICE Guidelines
NICE stands for The National Institute for Health and Care Excellence and it decides which drugs and treatments are available on the NHS in England and Wales and produces guidelines for medical professionals.
The All Wales Medicines Strategy Group also makes some decisions for the NHS in Wales. Generally they follow NICE decisions.
Scotland and Northern Ireland have separate organisations to make decisions.
The government developed NICE in 1999 to get rid of the post code lottery, which meant that some drugs and treatments were available in some parts of the country, but not in others. However with regards to access to Avastin this aim only appears to have been achieved to a certain extent in England.
Avastin has not been approved by NICE or the Scottish Medicines Consortium (SMC) as a first treatment or for first recurrence within the NHS on the grounds that it is not cost effective and does not increase overall survival. Although th latest data from the ICON 7 trial demonstrated that on average 9.4 months was added to the overall survival of patients most at risk. It is likely that this figure may increase as time goes by and is anticipated to reach the 12 months additional survival required by NICE.
In England only, doctors may be able to access this drug through the cancer drugs fund.
The Cancer Drugs Fund (CDF)
The Cancer Drugs Fund is money the Government has set aside to pay for cancer drugs that haven’t been approved by NICE and aren’t available within the NHS in England. This may be because the drugs haven’t been looked at yet or because NICE have said that they don’t work well enough or are not cost effective. The aim of the fund is to make it easier for people to get as much treatment as possible.
The Cancer Drugs Fund has been in operation since October 2010 and in April 2013 the management of the fund was taken over by NHS England. Now there is one
national list of approved fast-track drugs which the Cancer Drugs Fund
will routinely fund, giving uniform access to treatments across England.
Originally the Cancer Drugs Fund was only set to run until the end of March 2014 but this has now been extended until 2016. However the long term future of the fund is at present uncertain.
Avastin is approved for funding by the Cancer Drugs Fund in the following circumstances:
First-line treatment: Women with a new diagnosis of ovarian cancer can apply for funding for Avastin if they meet the following criteria:
Second-line treatment: Women who have been told they have recurrent ovarian cancer for the first-time can access Avastin if they meet the following criteria:
Situation in Wales, Scotland and Northern Ireland
The governments of Scotland, Wales and Northern Ireland decide on how they spend money on health and so far have decided not to have a Cancer Drugs Fund or similar programme.
Therefore it is down to individual health authorities as to whether the drug is funded or not so where you live can determine what cancer treatments are available.
This has become such an issue in Wales that women with ovarian cancer are crossing over the borders to register an address in England so that they can legally access the Cancer Drugs Fund. A recent article published by the Sunday Express explains the issues faced by patients:
The good fight: A drug that can add years to lives of ovarian cancer patients
My own experiences of Avastin
As I was diagnosed and treated for first line before Avastin was given EU approval I was unable to access Avastin until my recent first recurrence.
I met with my oncologist in November 2013 following a CT scan that showed my cancer had spread to discuss my treatment options. The options included chemotherapy and hormonal treatments and I was told that this would be the last time that I would be allowed to have Avastin.
My consultant explained that whilst the chemotherapy may or may not work because of my low grade cancer that low grade cancers have responded to Avastin and this has been suggested by a retrospective review undertaken at Memorial Sloan-Kettering Cancer Center, New York by Dr. Aghajanian and her colleagues. I was also advised to start treatment straight away because of the cancer on my bowel.
Getting the Avastin was a lot easier than I thought it would be and I started treatment the following week. The first treatment of Avastin was given over 90 mins and initially it made me feel sick and I also had a banging headache for which I was given some paracetamol.
I was warned that I might get nose bleeds and whilst there may have been some spotting of blood the main impact of my nose seemed to be blocked sinuses and a runny nose. The inside of my nose also felt really irritated and this would happen every time I had the Avastin. Many of these symptoms have now settled down.
At first my blood pressure and
urine samples were fine but gradually my blood pressure began to
increase as did the protein in my urine. I am now on tablets to manage
my blood pressure and my medication is reviewed on a regular basis by my
GP.
I had a CT scan in February 2014 which showed a partial response including some minor shrinkage and no new disease. I had never had shrinkage before on carboplatin. At this stage with the recommendation from my consultant I decided to stop chemotherapy but continue with the Avastin. My CA125 has been falling gradually and we should have a better idea if the Avastin is still working when I have my next scan in May 2014.
Avastin is the commercial name for a drug called Bevacizumab (pronounced bev-a-siz-you-mab). It was first given approval in 2004 to be used alongside chemotherapy treatments for Colon (Bowel) Cancer. It has also been used in the treatment of certain lung, kidney, brain and breast cancers.
Roche, the company that make Avastin, received approval from the EU for treating ovarian cancers. The approval was for its use in combination with chemotherapy for first line treatment (December 2011) and first recurrence (October 2012).
The FDA, which is the approving body in the USA, have not been asked to approve Avastin for use with ovarian cancers because of a lack of evidence that it extends life, even though it can extend progression free periods by a few months, and also over concerns of some of the side effects. The FDA also withdrew approval for the use of Avastin in breast cancers in 2011.
The purpose of this post is to explain what Avastin is, how it works and how it is funded. However not everyone in the UK has equal access to this drug.
How does Avastin Work?
Unlike traditional chemotherapy drugs that prevent cell division Avastin is a biological therapy that interferes with processes in the cell.
It works by stopping the growth of new blood vessels that are needed by the cancer cells for food and oxygen.
Therefore the tumours starve and start to shrink as the cells die off. Doctors call treatments that interfere with the development of a blood supply anti angiogenesis treatments.
The drug is given through a drip into the vein and for ovarian cancer it is given every 3 weeks.
Initially Avastin is given over 90 minutes, which is gradually reduced to 30 minutes if you do not have any problems with it.
Common Side Effects
More than 10 in every 100 people have one or more of these.
- High blood pressure occurs during treatment in about 1 in 4 people (25%) – this is monitored before every treatment and can be controlled with blood pressure tablets
- Feeling sick happens in about 2 out of 3 people (67%) but most people aren’t actually sick
- Diarrhoea and abdominal pain – this can be severe in up to 1 in 3 people treated (32%)
- Tiredness (fatigue) and weakness during and after treatment – most people find their energy levels start to improve when treatment ends
- Pain and weakness affecting your joints, muscles, chest and abdomen
- A drop in white blood cell count causing an increased risk of bacterial infection – infection may cause headaches, aching muscles, a cough, a sore throat, pain when passing urine, or may make you feel cold and shivery. Infections can sometimes be life threatening.
- Numbness or tingling in fingers and toes occurs in more than 1 in 10 people (10%) – this can cause difficulty with fiddly things such as doing up buttons. It may start within a few days or weeks and usually goes within a few months of finishing treatment
- Slow wound healing – Avastin will not be started until at least 28 days after surgery or after any wounds have healed
- Poor appetite
- Constipation
- Watery eyes
- Difficulty speaking
- Nosebleeds
Avastin Trials for Ovarian Cancer (Source: Cancer Research UK)
The American GOG218 trial reported in June 2010 that Avastin with chemotherapy controlled advanced ovarian cancer for longer than chemotherapy alone. All the women in the trial had standard chemotherapy. Half of the women also had Avastin during the chemotherapy and then on its own once the chemotherapy had ended. Another large American trial reported in December 2011 and confirmed that adding Avastin to standard chemotherapy seems to control advanced ovarian cancer for about 4 months longer than chemotherapy alone.
In the UK a large, phase 3 trial called ICON 7 looked into whether adding bevacizumab to standard chemotherapy could lower the risk of ovarian cancer coming back after surgery. Between December 2006 and February 2009, 1528 women from Europe, Canada, Australia and New Zealand joined the trial. They all had ovarian cancer removed with surgery. Half the women had standard chemotherapy with carboplatin (Paraplatin) and paclitaxel (Taxol) every 3 weeks for 6 cycles of treatment and then no treatment until their cancer started to grow again. The other women had Avastin as well as the standard chemotherapy. When their chemotherapy finished they had 12 more doses of the Avastin every 3 weeks.
The research team found that combining Avastin with standard chemotherapy lengthened the time before the cancer came back for some women. But it didn't help the women live longer. Overall, women who had Avastin and chemotherapy had an average of 2 months of extra time without the cancer coming back or growing. Women who had a more advanced stage cancer to start with had the most benefit. Women in both treatment groups had some side effects. The most common side effect of Avastin was high blood pressure but this was easily treated.
The video above shows Dr Timothy Perren, from Leeds Teaching Hospitals NHS Trust being interviewed at European Society for Medical Oncology (ESMO) in 2010. At that time data for the overall survival (OS) figures from the ICON 7 trial were not available but were anticipated in 2012. The final results were presented at the European Society of Gynaecological Oncology (ESGO) meeting in 2013 . The data showed that women at highest risk of their cancer recurring lived on average 9.4 months longer than those who received chemotherapy alone.
Results of the ICON7, phase III clinical trial. Results of the ICON7, phase III clinical trial. ecancer.tv - Essential viewing for oncologists
The mEOC trial is comparing 2 different chemotherapy combinations with or without Avastin for a rare sub type of ovarian cancer called mucinous ovarian cancer. The doctors in this trial want to find out which chemotherapy combination works better to control cancer growth. And they want to find out whether adding Avastin to chemotherapy is a useful treatment for this group of women. Recruitment for the trial closed in August 2013 but the results have not yet been made public.
NICE Guidelines
NICE stands for The National Institute for Health and Care Excellence and it decides which drugs and treatments are available on the NHS in England and Wales and produces guidelines for medical professionals.
The All Wales Medicines Strategy Group also makes some decisions for the NHS in Wales. Generally they follow NICE decisions.
Scotland and Northern Ireland have separate organisations to make decisions.
The government developed NICE in 1999 to get rid of the post code lottery, which meant that some drugs and treatments were available in some parts of the country, but not in others. However with regards to access to Avastin this aim only appears to have been achieved to a certain extent in England.
Avastin has not been approved by NICE or the Scottish Medicines Consortium (SMC) as a first treatment or for first recurrence within the NHS on the grounds that it is not cost effective and does not increase overall survival. Although th latest data from the ICON 7 trial demonstrated that on average 9.4 months was added to the overall survival of patients most at risk. It is likely that this figure may increase as time goes by and is anticipated to reach the 12 months additional survival required by NICE.
In England only, doctors may be able to access this drug through the cancer drugs fund.
The Cancer Drugs Fund (CDF)
The Cancer Drugs Fund is money the Government has set aside to pay for cancer drugs that haven’t been approved by NICE and aren’t available within the NHS in England. This may be because the drugs haven’t been looked at yet or because NICE have said that they don’t work well enough or are not cost effective. The aim of the fund is to make it easier for people to get as much treatment as possible.
The Cancer Drugs Fund has been in operation since October 2010 and in April 2013 the management of the fund was taken over by NHS England. Now there is one
national list of approved fast-track drugs which the Cancer Drugs Fund
will routinely fund, giving uniform access to treatments across England. Originally the Cancer Drugs Fund was only set to run until the end of March 2014 but this has now been extended until 2016. However the long term future of the fund is at present uncertain.
Avastin is approved for funding by the Cancer Drugs Fund in the following circumstances:
First-line treatment: Women with a new diagnosis of ovarian cancer can apply for funding for Avastin if they meet the following criteria:
- This is their first treatment for ovarian cancer
- They have stage III ovarian cancer, have undergone a debulking surgery but still have 1cm or more of cancer remaining. Or, they have stage IV ovarian cancer.
Second-line treatment: Women who have been told they have recurrent ovarian cancer for the first-time can access Avastin if they meet the following criteria:
- This is their first recurrence
- They have not previously been treated with Avastin
- They are platinum sensitive i.e. they finished carboplatin + taxol chemotherapy 6 months ago or more
Situation in Wales, Scotland and Northern Ireland
The governments of Scotland, Wales and Northern Ireland decide on how they spend money on health and so far have decided not to have a Cancer Drugs Fund or similar programme.
Therefore it is down to individual health authorities as to whether the drug is funded or not so where you live can determine what cancer treatments are available.
This has become such an issue in Wales that women with ovarian cancer are crossing over the borders to register an address in England so that they can legally access the Cancer Drugs Fund. A recent article published by the Sunday Express explains the issues faced by patients:
The good fight: A drug that can add years to lives of ovarian cancer patients
My own experiences of Avastin
As I was diagnosed and treated for first line before Avastin was given EU approval I was unable to access Avastin until my recent first recurrence.I met with my oncologist in November 2013 following a CT scan that showed my cancer had spread to discuss my treatment options. The options included chemotherapy and hormonal treatments and I was told that this would be the last time that I would be allowed to have Avastin.
My consultant explained that whilst the chemotherapy may or may not work because of my low grade cancer that low grade cancers have responded to Avastin and this has been suggested by a retrospective review undertaken at Memorial Sloan-Kettering Cancer Center, New York by Dr. Aghajanian and her colleagues. I was also advised to start treatment straight away because of the cancer on my bowel.
Getting the Avastin was a lot easier than I thought it would be and I started treatment the following week. The first treatment of Avastin was given over 90 mins and initially it made me feel sick and I also had a banging headache for which I was given some paracetamol.
I was warned that I might get nose bleeds and whilst there may have been some spotting of blood the main impact of my nose seemed to be blocked sinuses and a runny nose. The inside of my nose also felt really irritated and this would happen every time I had the Avastin. Many of these symptoms have now settled down.
I had a CT scan in February 2014 which showed a partial response including some minor shrinkage and no new disease. I had never had shrinkage before on carboplatin. At this stage with the recommendation from my consultant I decided to stop chemotherapy but continue with the Avastin. My CA125 has been falling gradually and we should have a better idea if the Avastin is still working when I have my next scan in May 2014.
Saturday, 29 March 2014
Killing Me Softly - a long & difficult day at The Christie
Thursday of this week I was due at The Christie for my next treatment of Avastin. I also had an appointment in the morning with pyschooncology then blood at midday. I was due to see the oncologist an hour later and then start treatment mid-afternoon so it was going to be a long day.
I was meeting with one of the team from the pyschooncology team they can help patients cope with human side of cancer. I had felt really drepressed during chemotherapy and I was also very sad about the recent losses of some friends to ovarian cancer. The hour flew by I almost talked non stop, one of the issues we discussed was talking to my oncologist about my prognosis. I felt confused about my diagnosis I didn't understand what being low grade would mean in the longer term and I felt I was putting off some important decisions because of this.
Next I went and had my bloods taken when you have cancer they like to keep an eye on your blood count, liver and kidney function and also check your tumour (CA125) markers. I had an hour before my next appointment so I decided to pop into Withington village to run a couple of errands and get a bite to eat.
I had missed out on training on Tuesday so I did not want to skip Thursdays session so I decided the best thing to do was to include it into my journey over to The Christie. I got up early enough fed the cats, made myself some breakfast, checked my email etc. and generally faffed around getting everything together that I would need for the day. I had let the cats out so before I could go I would need to get them back in so I was 15 mins late setting off.
I jogged over through the park but Princess Parkway was very busy with traffic trying to get into the city centre so rather than risk an accident I decided to jog over to the pedestrian crossing and then Wilbraham Road. I was looking for a short cut through the housing estate but instead I turned into a dead end end requiring me to retrace my foot steps. It took me about 56 mins to walk/run the three miles over to the hospital making me a little bit late for my appointment. Here are Thursdays stats:
I checked in at reception and handed over my letter for that mornings appointment apologising for being a bit late. I was then slightly confused when she told me my appointment wasn't until this afternoon and I was too early. I referred her back to the letter and told her that I was due to have treatment this afternoon and have my bloods done and see the consultant before then.
Of course then I was told I couldn't have my bloods done at mid-day as they would still be on morning clinics. I have had this problem before so I decided to stand my ground and very firmly pointed out that my bloods needed to be done then and all she had to do was to fill out a blood form from my details on the computer.
However we still had the issue of this mornings appointment so I asked again but thankfully one of her colleagues intervened and told her she had to phone through to let them know I was here. By this time I was half an hour late going into my appointment.
I was meeting with one of the team from the pyschooncology team they can help patients cope with human side of cancer. I had felt really drepressed during chemotherapy and I was also very sad about the recent losses of some friends to ovarian cancer. The hour flew by I almost talked non stop, one of the issues we discussed was talking to my oncologist about my prognosis. I felt confused about my diagnosis I didn't understand what being low grade would mean in the longer term and I felt I was putting off some important decisions because of this.Next I went and had my bloods taken when you have cancer they like to keep an eye on your blood count, liver and kidney function and also check your tumour (CA125) markers. I had an hour before my next appointment so I decided to pop into Withington village to run a couple of errands and get a bite to eat.
Then it was back to Outpatients to see the oncology team. Today I actually got to see my consultant he is always very positive and seemed pleased that bloods were good, blood pressure was normal, urine sample only a little bit of protein and my CA125 was falling so I was OK to have my treatment that afternoon. We also discussed having a CT scan in May to see how things were going as they like to do a scan every three months whilst on Avastin.
At the end he always asks if I have any questions. This time I decided to be brave and asked a direct question about my prognosis. I asked if the cancer would kill me or if I could die of something else and I also asked if it was possible to give some sort of time-frame and explained that there some financial reasons for this. The first part of my question was relatively straight forward he confirmed that the cancer would shorten my life. However he couldn't really put any sort of time-scale on this he mentioned that he thinks I might be platinum resistant.
This is significant because carboplatinum is made from platinum and is one of the best tolerated drugs used in the treatment of ovarian cancer. The last two times I have had carboplatinum I have stopped part way through treatment because although the cancer stabilises it does not completely eliminate the cancer. This means that my options for treatment are now a little bit more limited I have always known that this might be the case as low grade cancers do not always respond to chemotherapy.
There was a bit to this conversation that I felt was a bit odd, I have always assumed that when the time comes I would get a bit of advance notice but I was told I would need to keep asking the question and to ask again in a years time.
I had another hour before my next appointment so I took my notes to Oak Road Reception, made sure they had my mobile number and went to the relaxation room to use the computers. The computers are so old and slow that is it far from relaxing. However I did notice that someone had posted on my time-line that there was an article about my fund raising in the Sale & Altrincham Advertiser.
About 3 pm my phone rings and its the chemotherapy unit to advise that my treatment wasn't taken off hold until 2:30 pm so it won't be there until the last delivery at 5:30 pm. I am not best pleased but there is not much I can do about this except try and take my frustration out on the PCs that do not seem to want to co-operate with my frantic button pressing.
Eventually I was called upstairs at about 5:00 pm feeling absolutely shattered I was upstairs until about 8:00 pm and on the way home I popped into the supermarket for a bottle of wine - it had been a long and difficult day.
This is significant because carboplatinum is made from platinum and is one of the best tolerated drugs used in the treatment of ovarian cancer. The last two times I have had carboplatinum I have stopped part way through treatment because although the cancer stabilises it does not completely eliminate the cancer. This means that my options for treatment are now a little bit more limited I have always known that this might be the case as low grade cancers do not always respond to chemotherapy.
There was a bit to this conversation that I felt was a bit odd, I have always assumed that when the time comes I would get a bit of advance notice but I was told I would need to keep asking the question and to ask again in a years time.
I had another hour before my next appointment so I took my notes to Oak Road Reception, made sure they had my mobile number and went to the relaxation room to use the computers. The computers are so old and slow that is it far from relaxing. However I did notice that someone had posted on my time-line that there was an article about my fund raising in the Sale & Altrincham Advertiser.
About 3 pm my phone rings and its the chemotherapy unit to advise that my treatment wasn't taken off hold until 2:30 pm so it won't be there until the last delivery at 5:30 pm. I am not best pleased but there is not much I can do about this except try and take my frustration out on the PCs that do not seem to want to co-operate with my frantic button pressing.
Eventually I was called upstairs at about 5:00 pm feeling absolutely shattered I was upstairs until about 8:00 pm and on the way home I popped into the supermarket for a bottle of wine - it had been a long and difficult day.
Sunday, 23 March 2014
Not Nineteen Forever
From the title of this post some of your may be able to work that I am a big fan of The Courteeners. The Courteeners are a Manchester band from Middleton and formed in 2006. I can't quite remember how I discovered them but I remember going to see them in Preston @ 53 Degrees in 2008. Their tracks are always on my playlist when I am running and 'Not Nineteen Forever' is perhaps one of their better known songs entering the charts at number 19 on 31 March 2008 from their début album St Jude:
I was looking forward to today's run and went out in the sunshine this afternoon. I headed over to my local park, which is currently being regenerated due to a successful lottery bid. The regeneration works have caused some controversy because it involves removing some of the trees so parts of the park are currently fenced off making it a bit more challenging to run round but it is used for a monthly women's 5k.
Today's run was the longest so far 45 mins that included a 5 min warm up walk and 8 sets of run 2 mins walk 3 mins, this is probably what I will do on race day but without the warm up walk. It felt a bit hard at first probably I was going a bit too quickly but as the run progressed I settled into a rhythm and finished strong. These are today's stats:
I have also had some good news about my press release - the Manchester Evening News are sending a photographer round on Tuesday to photograph me running. Fingers crossed it will get published and help to raise awareness and money for Target Ovarian Cancer.
Please don't forget to sponsor me if you haven't already.
I was looking forward to today's run and went out in the sunshine this afternoon. I headed over to my local park, which is currently being regenerated due to a successful lottery bid. The regeneration works have caused some controversy because it involves removing some of the trees so parts of the park are currently fenced off making it a bit more challenging to run round but it is used for a monthly women's 5k.
Today's run was the longest so far 45 mins that included a 5 min warm up walk and 8 sets of run 2 mins walk 3 mins, this is probably what I will do on race day but without the warm up walk. It felt a bit hard at first probably I was going a bit too quickly but as the run progressed I settled into a rhythm and finished strong. These are today's stats:
I have also had some good news about my press release - the Manchester Evening News are sending a photographer round on Tuesday to photograph me running. Fingers crossed it will get published and help to raise awareness and money for Target Ovarian Cancer.
Please don't forget to sponsor me if you haven't already.
Friday, 21 March 2014
Running is a social activity
I missed a training run earlier in the week due to some complicated admin that took longer than I expected. I was trying to sort out a mail merge to send out a press release to the local press but it took me three attempts to get it right.
I did manage to get out for a walk/run yesterday evening and I had a bit of company as well. I was joined by a friend who I know through local running club Chorlton Runners. She has had a bit of time away from running as well due to family commitments and was struggling with motivation to get out. Sometimes the most difficult part of a run can be just getting out the door.
I certainly knew that feeling yesterday as it had been a bit wet earlier in the day. Often when I feel like that I will put on my running kit and tell myself I will get changed and see how I feel knowing that by the time I have that I will think well I might as well go out now. It also helped that knowing that someone else would be joining me.
We talked a bit about my cancer diagnosis and also some of the barriers that women can feel that often stop them running or even joining a club. I know I have had some issues in the past because I am a slower runner.
When I lived over in Chorley between 2007 and 2009 I used to belong to a women's running group that had evolved out of the now disbanded women's running network. It was a completely different atmosphere to a mixed group club. Women run for different reasons to men often it is more about weight management, becoming fit and healthy, feeling good about yourself and to enjoy the company of other women. I loved being part of this club no one ever got left behind and whilst I wasn't the fastest I also wasn't the slowest either.
Our local running club is also very good and very inclusive catering for all ranges and abilities and since I first went a couple of years ago it has really grown into quite a big club. I haven't been for a while as I was finding with the cancer becoming active I became increasingly fatigued and struggled to keep up with the beginners group.
Here are yesterday's stats:
However it was good to have some company on the run last night as it encourages you both to push a little bit harder. The minutes certainly flew by and some how we managed to switch from running 2 mins and walking 3 mins to running 3 mins and walking 2 mins. No wonder I was starting to struggle a lot towards the end. So thanks to my fellow clubmate for her company and making me work harder.
I also have some other news my sister-in-law Lynn Broadhurst has also decided to enter the Bupa Great Manchester Run and will also be raising money for Target Ovarian Cancer this will be her first run and I am very proud of her. Please show your support by sponsoring her:
Lynn Broadhurst is fundraising on JustGiving for Target Ovarian Cancer
However it was good to have some company on the run last night as it encourages you both to push a little bit harder. The minutes certainly flew by and some how we managed to switch from running 2 mins and walking 3 mins to running 3 mins and walking 2 mins. No wonder I was starting to struggle a lot towards the end. So thanks to my fellow clubmate for her company and making me work harder.
I also have some other news my sister-in-law Lynn Broadhurst has also decided to enter the Bupa Great Manchester Run and will also be raising money for Target Ovarian Cancer this will be her first run and I am very proud of her. Please show your support by sponsoring her:
Lynn Broadhurst is fundraising on JustGiving for Target Ovarian Cancer
Thursday, 20 March 2014
Selfiegate
Now I must admit to feeling a bit miffed when lots of people I knew were posting photos of themselves to raise awareness of cancer:
No makeup selfies: women on Facebook and Twitter post bare-faced photos to raise awareness for cancer
Why was I feeling miffed? Was it because it is ovarian cancer awareness month but none of these posts were contributing to ovarian cancer issues? Was is because friends and family on my facebook page were ignoring my frequent posts asking for donations?
I do feel a bit angry because I so feel it trivialses the feelings of being diagnosed with cancer. The fear that you are going to die, that you might not have as much time with your loved ones as you thought, the grief that you feel knowing you can never have children, the lack of self confidence and loss of sexual identity and the utter feeling of being alone knowing that your life has changed forever. Then someone I know with ovarian cancer posted this powerful image of herself:
Don't get me wrong I am glad you are raising money for cancer research but don't think your selfies unless you actually have cancer raises its awareness and certainly not for the cancers that are difficult to diagnose.
If you know someone with cancer do something nice for them and make a donation in to a charity of their choice.
If you know me then help me raise money for Target Ovarian Cancer and help women to recognise the symptoms of ovarian cancer so that they can be diagnosed earlier and have better chances of survival. That is what would really make me happy....
You know what to do
Tuesday, 18 March 2014
Target Ovarian Cancer Awareness Stall - The Christie
Yesterday I joined Sarah Jeffrey from Target Ovarian Cancer for some awareness raising at The Christie. Sarah is the North West co-ordinator for Target Ovarian Cancer. She joined the organisation in 2013 having considerable experience of working in the voluntary/charity sector and lives in the North West. If you listened to Sue's radio interview on BBC Radio Merseyside you would have heard Sarah talking about Ovarian Cancer.
Due to much faffage in the morning I was running a little bit behind and was worried I might be late as I had another appointment prior to meeting up with Sarah. I decided to use my road bike to cycle. Now so far the furthest I have cycled on my bike since I stopped chemotherapy has been 2.4 miles then I had to get off and walk the rest of the way. I
After securing my bike in the cycle stand at The Christie I went in search of Sarah. I wasn't sure what Sarah looked like for some reason I had it in my head she was a brunette. I had a pretty good idea where she would be setting up but I walked past the information centre and there was someone putting up posters about some health related work scheme. I had a quick a quick look round outpatients and headed back. I was just going into the information centre to ask when Sarah spotted me.
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| Sarah Jeffrey Target Ovarian Cancer |
We were sharing the display boards with The Christie but there was plenty of room to put up some posters and put out all the leaflets and cards of both symptoms and information for women with ovarian cancer.
The location was excellent as we were on the link between the Oak Road Treatment Centre and the main part of the building so there was plenty of foot traffic and it was very busy when we were trying to set up.
I have done events like this many times before in my previous professional life but it is still always a bit nerve racking speaking to the general public about issues that are important to you. However everyone we spoke to seemed very interested. There was a mix
The morning flew by very quickly and it was a pleasure to meet and help Sarah out on the stall I am glad she accepted the post of North West Co-ordinator. I hung out for an extra hour because I knew that Hilary was coming up from Stoke to help out in the afternoon and I wanted to say hello and have a quick catch up on how she is doing.
All in all I thought it was a very productive morning and I am glad I volunteered to help and according to the Moves app I cycled a total of 6.8 miles - get in!
Sunday, 16 March 2014
In Memory Sharon Graham Gould
I nearly didn't go out for today's training run I have been feeling a little bit sad. There was an article in today's Sunday Express Magazine on Ovarian Cancer it told of Sharon's fight for fairer and better treatment which sadly she was denighed depriving her potentially another 9 months with her family. Sharon is survived by her husband and her two teenage sons.
However I managed to force myself out the door and I didn't feel in the mood for listening to music so I thought I would post one of Sharon's songs she was also had an amazing voice:
Therefore it was just my garmin and I on this evenings run. Still the minutes seem to fly by as I was deep in thought and I missed the road I was going to turn down so ended up going a bit further. I am quite pleased with this weeks training I have showed some progress and I am starting to feel stronger. I wish I could say the same for riding my bike!!!
This evening training stats for those running geeks amongst you:
However I managed to force myself out the door and I didn't feel in the mood for listening to music so I thought I would post one of Sharon's songs she was also had an amazing voice:
Therefore it was just my garmin and I on this evenings run. Still the minutes seem to fly by as I was deep in thought and I missed the road I was going to turn down so ended up going a bit further. I am quite pleased with this weeks training I have showed some progress and I am starting to feel stronger. I wish I could say the same for riding my bike!!!
This evening training stats for those running geeks amongst you:
Saturday, 15 March 2014
Thursday, 13 March 2014
Women of Strength - Colette's Story
Through having ovarian cancer I have come across women from all walks of life but one thing they all have in common is their incredible strength
The above story was published in yesterday's Liverpool Echo in time for her 60th birthday. Happy birthday Colette and just for you one of your favourites.
I'm a fire and I burn burn burn tonight
Today's running theme song is:
I like to listen to music when I run it really motivates me and this one really got me moving today. Apologies to anyone in Old Trafford that heard my singing and I bet you didn't have me down as a bit of a rock chick.
Quite a bit of traffic around on today's run interfering with some of my running splits - don't they know that I am a serious afleet
In spite of that I think I was a little bit quicker today I was certainly checking my watch to see when my walk break was towards the end.
Here are today's stats:
Happy running and you know what to do
I like to listen to music when I run it really motivates me and this one really got me moving today. Apologies to anyone in Old Trafford that heard my singing and I bet you didn't have me down as a bit of a rock chick.
Quite a bit of traffic around on today's run interfering with some of my running splits - don't they know that I am a serious afleet
In spite of that I think I was a little bit quicker today I was certainly checking my watch to see when my walk break was towards the end.Here are today's stats:
Happy running and you know what to do
Wednesday, 12 March 2014
Diagnostic Dilemas
What happened next....
I
had an external ultrasound the next day which confirmed the ascities.
By Wednesday I was on the ward having the fluid drained from my stomach.
In total they drained off 5 litres of fluid some of which was sent to
the lab for further tests.
It
took a week for the results to come back and I was having to travel
backwards and forwards between my home in Hampshire and Manchester to
deal with some familiy issues. On the 15 March 2011 I phoned my
consultants secretary to ask if the results were back and I was told
that they had found cancer cells in the fluid that I would need a scan.
This was the same day that my nanna died of stomach cancer.
My
scans had to be in fitted around my nannas funeral. I was feeling a
little better since the fluid had been drained off my tummy but I was
still feeling poorly. I was getting constant pains in lower abdomen
(this is the bit below the belly button) and I was going to the toilet
frequently i.e. more than 12 times a day.
I
had two scans one was called a CT scan which is a sort of 3D x-ray and I
also had an MRI where I had to lie in the scanner with some headphones
on as it was very noisy. At first I was told that the CT scan confirmed
that I had something called Primary Peritoneal Cancer - the peritoneal
is the lining of the tummy. This not only contains the
ovaries but also the kidneys, liver and pancreas as well as the
digestive system.
At
this point I decided that I wanted to be closer to my family so I asked
my consultant to refer me to The Christie in Manchester. I gave my notice in at work
and took a couple of weeks to pack up the stuff I was going to keep and
get rid of the stuff that I wouldn't need.
I
met with my consultant at The Christie at the beginning of May 2011. He
was not satisfied with my intial diagnosis and felt I needed a biopsy to
confirm the type of cancer I had as this would be important to what
treatment I would need.
I then endured some very painful procedures as my diagnosis did not turn out to be very straight forward but eventually I was diagnosed with a low grade ovarian cancer at the end of July 2011 after having surgery.
I then endured some very painful procedures as my diagnosis did not turn out to be very straight forward but eventually I was diagnosed with a low grade ovarian cancer at the end of July 2011 after having surgery.
Low
grade means that the cancer grows and spreads very slowly. I was told I
would need chemotherapy to mop up the cancer cells and that my cancer
was not curable as it was quite advanced. However this did not mean I
was dying but that I might need more treatment at a future date.
Two
years after I had finished my first chemotherapy the cancer came back
and it had spread. I have had some more chemotherapy treatment which I
have recently finished and I am now on a drug called Avastin to prolong
my remission period.
Obviously there are days that I feel very sad when I consider how much I have given up for the cancer and I get angry as well. However writing my blog has allowed me to look back and consider what I have gained since my diagnosis.
Obviously there are days that I feel very sad when I consider how much I have given up for the cancer and I get angry as well. However writing my blog has allowed me to look back and consider what I have gained since my diagnosis.
Ovarian Cancer.........listen it whispers
My Ovarian Cancer Story
A friend of mine recently posted this quote by Bob Marley. It reminded me of when I first found out that I might have cancer, I was so scared about dealing with everything I was glad to find My Ovacome this is an online forum for women and their families who have or are going through diagnosis for ovarian cancer. Ovacome also fund a nurse led helpline as well and I have rung them many times.
I started feeling 'out of sorts' around Christmas 2010 whilst I was visiting family in Manchester at the time I was living and working in Hampshire.
At first it was just a bit of stomach ache, feeling sick and I had gone off my food a little bit. I was also getting a bit out of breath when I did any sort of exercise more than I usually would so I just put it down to overindulgence over the holiday period.
The symptoms continued to get worse throughout January and February 2011. I was feeling bloated all the time. I had to buy some new clothes as my old ones didn't fit me properly, I was gaining weight even though I was on a diet. I was also suffering with really bad acid reflux, I would get full very quickly and I was always feeling sick.
I was also finding it really difficult at work because I could not sit comfortably at my desk and I was constantly having to go to the toilet to wee. I also started to suffer with chronic constipation even when I did move my bowels it didn't feel like I had completely emptied them. I was starting to wonder if this was a really bad flare up of IBS as I have had similar symptoms before.
By the end of February I was feeling really poorly and miserable. I thought this couldn't be right so I decided to book an appointment with a GP. I always get a bit nervous going to see a doctor because I feel like I am wasting their time and sometimes it can be hard to explain why you are there.
As I walked into the surgery there were posters up on the wall for ovarian cancer month listing the three most common symptoms:
- Persistent bloating
- Feeling full very quickly and nauseous
- Changes to your bowels
That was the first time I considered that this might be something really serious. As scary as that was those posters helped me focus on those symptoms, which helped when talking to my GP.
My GP examined me and straight away ordered some blood tests which I had to come back for the next day. The following day I got a phone call from the surgery at 4 pm asking me if I could come and see the doctor at 5 pm. I was surprised that they had the results back so quickly and I was really scared. My GP sat me down and explained that my blood results were not normal. There was a marker in the blood that was used as an indicator for general inflammation in the pelvic area and mine was quite high. I was later to learn that this was called the CA125.
Radio Interview for Ovarian Cancer Awareness Month
At the beginning of the month I went to see my friend at Awaaz Community Radio to talk about ovarian cancer awareness month.
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Bupa Great Manchester Run
Since then I have completed the run in 2012 and 2013 both post cancer diagnosis in around 1:30 there are probably a few reasons for this. I have gained weight whilst on chemotherapy because of the steroids that are prescribed to prevent sickness, the combined effects of both major abdominal surgery and chemotherapy can actually take months to recover from and the cancer itself can also cause fatigue.
I am not sure if I will ever completely recover my fitness now it seems unlikely given the progressive nature of this disease and is something that I have found very frustrating and sometimes makes me feel a little socially isolated.
The run in 2012 was my first run after finishing first line treatment. Once you have been through diagnosis and finished treatment for the first time you can feel a little bit lost and abandoned so I decided I needed something to focus on and I have always loved running. I also wanted to 'do something' for all those that had helped through diagnosis and for those that would come after me.
I decided to raise money for a newish cancer charity called Target Ovarian Cancer and they were one of the few charities to show an interest in the North West by implementing a couple of pilot schemes and they also run their workshops all over the UK bringing women with ovarian cancer together.
Therefore after finishing my second lot of treatment at the beginning of this year I decided I would keep with the tradition and will be joining Team Target at this years Bupa Great Manchester Run on the 18 May 2014. This gives me about 8 weeks to train so that I can get round the course.
I have decided to follow a walk-run program as it will allow me to build gradually without too much risk of injury or overtraining and I aim to train 3 times a week. My training plan can be viewed here:
Week
|
Tuesday
|
Wednesday
|
Thursday
|
Friday
|
Saturday
|
Sunday
|
Monday
|
Week 1
Mar 11
|
Mar 11
Walk/Run
40 mins
|
Mar 12
Rest
|
Mar 13
Walk/Run
40 mins
|
Mar 14
Rest
|
Mar 15
Rest
|
Mar 16
Walk/Run
40 mins
|
Mar 17
Rest
|
Week 2
Mar 18
|
Mar 18
Walk/Run
40 mins
|
Mar 19
Rest
|
Mar 20
Walk/Run
40 mins
|
Mar 21
Rest
|
Mar 22
Rest
|
Mar 23
Walk/Run
45 mins
|
Mar 24
Rest
|
Week 3
Mar 25
|
Mar 25
Walk/Run
40 mins
|
Mar 26
Rest
|
Mar 27
Walk/Run
42 mins
|
Mar 28
Rest
|
Mar 29
Rest
|
Mar 30
Walk/Run
45 mins
|
Mar 31
Rest
|
Week 4
Apr 1
|
Apr 1
Walk/Run
42 mins
|
Apr 2
Rest
|
Apr 3
Walk/Run
42 mins
|
Apr 4
Rest
|
Apr 5
Rest
|
Apr 6
Walk/Run
50 mins
|
Apr 7
Rest
|
Week 5
Apr 8
|
Apr 8
Walk/Run
42 mins
|
Apr 9
Rest
|
Apr 10
Walk/Run
40 mins
|
Apr 11
Rest
|
Apr 12
Rest
|
Apr 13
Walk/Run
50 mins
|
Apr 14
Rest
|
Week 6
Apr 15
|
Apr 15
Walk/Run
42 mins
|
Apr 16
Rest
|
Apr 17
Walk/Run
40 mins
|
Apr 18
Rest
|
Apr 19
Rest
|
Apr 20
Walk/Run
60 mins
|
Apr 21
Rest
|
Week 7
Apr 22
|
Apr 22
Walk/Run
40 mins
|
Apr 23
Rest
|
Apr 24
Walk/Run
45 mins
|
Apr 25
Rest
|
Apr 26
Rest
|
Apr 27
Walk/Run
54 mins
|
Apr 28
Rest
|
Week 8
Apr 29
|
Apr 29
Walk/Run
40 mins
|
Apr 30
Rest
|
May 1
Walk/Run
45 mins
|
May 2
Rest
|
May 3
Rest
|
May 4
Walk/Run
70 mins
|
May 5
Rest
|
Week 9
May 6
|
May 6
Walk/Run
40 mins
|
May 7
Rest
|
May 8
Walk/Run
45 mins
|
May 9
Rest
|
May 10
Rest
30 mins
|
May 11
Walk/Run
62 mins
|
May 12
Rest
|
Week 10
May 13
|
May 13
Walk/Run
40 mins
|
May 14
Rest
|
May 15
Walk/Run
30 mins
|
May 16
Rest
|
May 17
Walk
20 mins
|
May 18
10K Race!
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May 19
|
I started my training yesterday evening and it followed on nicely from the running I had done so far. The plan said to walk/run for 40 mins so I started with a 5 min warm up walk followed by 7 sets of run for 2 mins and walk for 3 mins and for those of you that are into running stats yesterday's training can be seen here:
Considering everything that has happened recently it felt pretty good I tried to keep the run bits fairly steady and walk at a brisk pace.
If you would like to sponsor me just click on the link below and don't forget to add me to your favourites so you can check on my progress and maybe even feel like you are training with me...Alternatively you could put on your running shoes and come keep me company.
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