Like Oxford Linda, I was contacted by Susan Vento whose husband Bruce – a serving congressman for the state of Minnesota – died as a result of mesothelioma. Susan is a spokesperson for the Asbestos Cancer Victims Rights Campaign (ACVRC).
Recently in the states, asbestos companies have been using their political influence to introduce a new bill called “Furthering Asbestos Claim Transparency Act” or FACT for short.
ACVRC is justifiably concerned that this act will delay and, in some cases, deny justice and badly needed compensation to people suffering from asbestos-related diseases. It has launched a campaign to fight and defeat this unfair legislation.
Many thanks to Linda for supplying the text and letting us know how you can help:
1. Sign the petition to stop legislation that threatens cancer victims. Go to http://cancervictimsrights.org/take-action/sign-the-petition/ and follow the instructions to sign the petition at the bottom of the page. Every signature matters!
2. Spread the word by sharing today’s post with others who are, or might be, affected by this issue.
Another study has found that the beneficial compounds in green tea may be powerful mesothelioma fighters – especially when combined with other drugs and nutrients.
Epigallocatechin gallate (EGCG) is the most abundant polyphenol in green tea and is a potent antioxidant. A number of studies have suggested that it may help the body combat various types of cancer, including mesothelioma. Recently, a group of Italian mesothelioma researchers combined EGCG with Vitamin C and a chemotherapy drug called gemcitabine to create a treatment combination called AND (Active Nutrients/Drug).
To test the mixture, they administered AND to various mesothelioma cell lines in the laboratory. The result was a “synergistic cytotoxic mechanism”, meaning the ingredients in AND seemed to increase each other’s cancer-fighting properties in a way that was toxic to mesothelioma cells. When they tried the mixture on mice that had been artificially induced to develop mesothelioma, both their primary tumors and the number of ‘seed’ tumors or metastases shrunk. AND also appeared to prevent abdominal hemorrhage. Best of all, mesothelioma mice treated with AND lived longer.
The new AND study builds on several previous research efforts. A Japanese study on EGCG released in February found that the compound had the power to induce the cell degradation process called autophagy as well as apoptosis (cell death) in all five of the mesothelioma cell lines tested. In 2010, some of the same researchers found that high doses of Vitamin C had the same effect both in the lab and in mesothelioma tumors in living mice. Several studies have confirmed the value of the third compound, the chemotherapy drug gemcitabine, in the treatment of mesothelioma.
After a stable result at the last scan, you would hope there would be a few days of relief and some good times, but in fact we seem to have gone backwards. He is still in a lot of pain particualry in his neck and right shoulder, this is apparently caused by the nerve in the diaphragm being stressed.
The problem with the pain is it really affects his quality of sleep, and boy does he get grumpy if he doesn’t get enough sleep!
The ibrubrofen was working fairly well, but he has recently switched to celecoxib twice a day. This is the preferred painkiller for meso apparently as the active ingredient is currently in trials connected with restricting the growth of meso cells. There is however what appears to be one really big problem, he has started getting really bad nose bleeds that are both heavy and last intermittently for up to 4 hours.
Checkin out all the small print, nose bleeds can be one of the side effects of the painkiller . Would be good to know if anyone else has come across this problem before he goes back to the mega strength ibruprofen. Anything that contains opiates like oromorph really disagree with him and cause as many other problems as they solve , so aren’t really an option.
This terrible weather doesn’t help, the cold air aggravates the pain and it’s pretty miserable going out for a walk in this rain.
Not that I think they are related but today saw a return of the dreaded nosebleeds. The problem is it starts with an ordinary blow of the nose and end up still bleeding intermittently four hours later. At least it has now stopped but it’s horrible while it is happening.
The cold weather doesn’t help, it is so bitter that there is no chance of spending any time outside, the cold air goes straight into the compromised lung. This is because a normal lung contracts when out in the cold air so it can regulate the cold air as it goesin and warm it up slightly, a lung that has been stuck to the chest wall can’t do this properly, so the cold air floods into the lung causing breathlessness and chest pain.
The other side to the cold weather is that the heating is up on full, making the atmosphere drier than normal indoors, which may be contributing to nose bleeds and general levels of snottiness. Shopping plans for a humidifier at the weekend.
This will of course need to be fitted in between the rugby and the grand prix, one of Ray’s original targets was to see Lewis Hamilton win another world championship. Maybe this is the year!
Following on from the visit to the oncologist at Barts on Friday, we have bit more information and understanding. Basically there is this low activity at the base of his lung, at the top of the diaphragm. This has been visible from the very first PET scan two years ago. At the time it was unclear whether this was just inflammation from the various pleurudesis and surgery, or if it was connected to meso.
Two years further on it seems far less likely to be inflammation and far more likely to be meso. On the good side, the activity level itself hasn’t noticeably changed, so the meso that is there isn’t doing a great deal. I thought the oncologist used a really good phrase “it looks as as though your body is in equilibrium” and long may it last I say.
He also referred to a patient of his diagnosed back in 2004, who is still clear but has had a number of chest infections and he wondered if these had caused his immune system to ratchet up to deal with the infections , which had also helped control the meso.
What does seem to be clear from the research going on through out the world , is there is more and more interest in how the immune system itself deals with all cancers and a lot of the new treatment focus on working with the patients immune system to help control the tumour growth. So the immune boosting supplements sound a useful adjunct to other cancer treatments.
The next scan is scheduled for July, when very impressively Ray is booked in for the scan in the morning and the results in the afternoon. they now have new voice recognition technology in place so the radiologist reads out their report on the scan as they view it !!
There is a lot of research currently underway in the US on some very old chinese medicines. One in particular that has received attention has been PSK and PSP extracts from Coriolus versicolor, a mushroom traditionally used by Asian healers. Its medicinal effects are as a result of two naturally occurring chemicals, polysaccharide K (PSK) and polysaccharide-peptide (PSP). Studies have been done on both for their effectiveness in treating cancer.
In present day Japan, PSK has been approved by the Japanese government as a way to treat various types of cancer. Japanese patients have used PSK in conjunction with more traditional cancer therapies, such as radiation and chemotherapy. PSP is a newer extract which has only been more recently discovered. Studies are being done in China to determine the effectiveness of PSP. A third extract, verisicolor polysaccharid (VPS), is also sold in supplement form in the United States and is also being studied for its effectiveness.
Sloan kettering one of themajor cancer hospitals in the US even refers to it on thier website. It can’tbe prescribed as it hasn’t passedthe testing necessary for the FDA, however, they have been recommending it to breast cancer patients to take before and during chemotherapy.
Initial studies have been extremely promising regarding the mushroom’s impact on cancer. PSK has been shown to have anti-cancer properties which are effective on both animal and human subjects. In animals, PSK was shown to slow the growth of cancer cells. Although PSK has not been shown to be effective on every type of cancer, it has been shown to be helpful for cancer of the esophagus, stomach, colon and breasts. By using PSK with other conventional cancer treatments, patients had higher survival rates and longer periods of time without the disease.
PSK also boosted the immunity of human subjects when used in conjunction with chemotherapy. It is believed that PSK is also a strong anti-oxidant, and as such it can block free radicals which further damage cells.
It is now being looked at for other cancers such as meso, as part of the ongoing emphasis on immunotherapy.
Here’s hoping some of these chinese medicines start to show potential to help in the meso fight
Don’t you just love the medical profession- I think it’s officially called hedging your bets. The good news which obviously I am focussing on, is that there is no definitive difference from the last scan 6 months ago. There is possibly some additional activity however, it isn’t conclusively meso growth but could be linked to infection or inflammation above the diaphragm area.
The overall conclusion is that there is no indication that additional chemo is worth administering at this stage and see you again in six months. The extra pain in his back and shoulder is apparently linked to a nerve from the diaphragm- which is of course where the potential uptake from the PET scan is – so back to where we started.
We see the oncologist at Barts on Friday to discuss the results in more detail, so be interesting to hear his opinion but right now I think we will take the stable part of the diagnosis and bank it – thanks also to all the support over the last few days, especially to messages from Kay and Jane – thanks for understanding why I’m not in a fit state to have a rational discussion pre scan.
Another study appears to confirm the idea a compound found in green tea may be a powerful tool for combatting malignant pleural mesothelioma.
Epigallocatechin-3-gallate (EGCG) is a potent antioxidant found in abundance in green (though, not black) tea. It has long been thought to help fight cancer and other diseases by reducing the so-called free radicals produced during oxidative stress. Now, a new study conducted in Japan and published in Cancer Cell International finds that EGCG triggered cell death in five different human mesothelioma cell lines by doing just the opposite.
“We found that EGCG induced apoptosis (cell death) in all five mesothelioma cell lines in a dose-dependent manner,” write the authors in a summary of their findings. “We further clarified the cell killing mechanism; EGCG induced reactive oxygen species (ROS), and impaired the mitochondrial membrane potential.”
The production of reactive oxygen species (ROS) is an example of oxidative stress. While EGCG may help protect cells against ROS in lower concentrations, the new study finds that high doses of EGCG increased the ROS inside mesothelioma cancer cells, killing them. When the team treated the cells with compounds that fight ROS (catalase and tempol), EGCG was not as effective at inducing apoptosis. As the authors observe, “In most mesothelioma cell lines, higher concentrations (i.e. 100 µM or 200 µM) of EGCG induced cell death and low concentrations (i.e. 10 µM ) of EGCG failed to induce cell death.”
The other notable effect EGCG had on mesothelioma cells was autophagy. Autophagy is a breakdown of certain cellular components in reaction to stress. While it can be damaging, it can also be a way for cells to protect themselves from attack by outside agents. In the case of the mesothelioma cell lines being tested, although the autophagy triggered by EGCG may have done some damage, the damage was even worse when autophagy was suppressed.
The findings seem to support previous research, published last year in the Journal of Cellular and Molecular Medicine, that “EGCG is selectively cytotoxic to malignant mesothelioma cells with respect to normal mesothelial cells”. The Japanese team next plans to confirm their findings with tests of EGCG in live animals with mesothelioma. This study did not address the question whether drinking more green tea has any therapeutic value for mesothelioma patients.
4 days to results and not a good start to the weekend, Ray is back on the main painkillers and the pain in his back is increasing and now seems to be on both sides around the kidney area. Just to really cap things off he has seen the return of the dreaded night sweats with two nights running of waking up at 2am.
At least there is n’t too long to wait for the results and we can find out for definite if this pain is sinister. Confidence is not high at the moment and we are both feeling pretty down, hard to look forward to anything beyond Wednesday, we aren’t even talking about anything , it’s as though we are both hostages to 30 mins on Wednesday afternoon when we will know what we do next.
First part of the scan zone has now been completed- with the scan itself now finished. Not to early a start for a 1045 appointment, although as ever the transport was a bit traumatic. How London underground manages to constantly announce there is a goos service on all lines when you wait 30 mins for tube that is meant to run every 7 minutes is a mystery. Not obviously working on the same definition of “good” as the dictionary.
The delay resulted in an extremely stressed patient rushing late into St Thomas’s for the radioactive isotope injection. For once the compulsory resting period of 90 minutes was quite welcome. He is such an old hand now he was even prepped with his ipod to while away the time.
The scan itself doesnt take to long, although he has been so stiff lately that he needed a bit of help to get out of the machine.
As you can’t eat beforehand , not even acup of tea, step number one after the scan was to eat a banana he had taken with him( ready prepped again- a regular boy scout ) then back for lunch. Now we just need to manage the next few days until Wednesday afternoon when we get the results.
Have found we react to the stress of this time very differently, Ray gets more energised and slightly manic in his activity levels due to all the nervous energy. So he finds it hard to sit still, sleeps very badly etc. On the otherhand, I get more and more lethargic, feel as though every action is being done through treacle and can just about keep my eyes open.
Hopefully we can both get back to our new normal next week.