Mesothelioma isn’t just my battle, one person every day is newly diagnosed with this cancer

Without hope and support we might as well give up now

MESOTHELIOMA – the MANMADE Cancer

Mesothelioma is resilient to most things, hence the wide spread use of it during the 50’s, 60’s and 70’s

Treatment is only classed as palliative, hopefully some day this will be come a Chronic Illness but until then

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Information

Click on section headers below for further information

Video Assisted Thoroscopy

This is usually the first operation you will normally have to determine your diagnosis. 

It is carried out under full anaesthetic and it was classed as major surgery in 2004, whether it has been downsized to regular surgery I don’t know.

Normally 4 slender 2 to 3 inch incisions are made from under your arm to your shoulder blade. Where ever possible the surgeon will remove any large tumours that are hanging from your lung or your pleura.  Samples are taken for biopsy and fluid drained.

Your ribs are clamped open and your lung is deflated giving space for the surgeons to investigate your full chest area.  Your lung is then re-inflated with the help of drains that are connected to vacuums pulling your lung back against the chest wall.  On waking you will generally find you have 3 drains connected.  Recovery can take from 1 month to however long it takes, your ribs may have been fractured during this procedure as well as nerve damage.  Pain is always an issue after having this type of surgery.

A pleurodesis may or may not be carried out at this time.

Pleurodesis

Our lining is full of little nerves that get irritated by the mesothelioma growth.  Hence the only form of defence is to flood the space with fluid.  The idea behind a pleruodesis is to seal the lung and the pleura together stopping any space for the fluid to build up in. 

Chemicals such as Talc are used to irritate the lung or in some cases  your own blood. The procedure may be carried out under local or general anaesthetic.

The cancer would normally grow any which way it can but with the pleurodesis the cancer is forced to grow around the lung, hence thickening of the lining is seen.

Again you will have drains to help reduce the air space ensuring a good solid adhesive of lung to lining.  In most cases this procedure works

Decortication/Pleurectomy and EPP

The newest technique for removing cancer with surgery. This started out in USA some 70 years ago for the treatment of tuberculosis and is now deemed front line treatment in the State of California for the removal of mesothelioma. It is still quite new here in England and at time of writing I think only 4 surgeons in the UK who actually carry this out. At the moment they are:

Mr John Edwards at Sheffield Secretary’s Number: 0114 226 9279

Mr Carr at Liverpool Secretary’s Number 0151 228 1616

Mr Waller at Leicester (Sorry no further information)

Loic Lang-Lazdunski MD

Guy’s Hospital, St Thomas Street, London SE1 9RT

(Heard from KE that Dr Lang-Lazdunski worked under Dr Sugarbaker in the USA as well as participating on the MARS trials here)

Leicester was the main centre for this operation as Dr Waller started the MARS trial back in the early 2000. 

I have attached two webpage addresses which cover both EPP (Extrapleural pneumonectomy) and Decortication.

http://www.chestjournal.org/content/116/suppl_3/446S.full

Sample of the article, but I would recommend you view the site as it shows tables etc along with conclusions. Please remember that this article was written a long time ago and has not current figures, we’ve come along way since 1997.

Although the MARS trial failed to show that surgery was better than standard Chemotherapy again it all depends on what stage you are and whether you want to take months to recover.  At the moment chemotherapy is usually started after Surgery.

As at 2012 I believe that a more advanced form of removing the pleura lining is now done, where only 4 incisions are made, similar to the VAT.  This gives a faster recovery period and less nerve damage.

Surgical Technique of Pleurectomy

Pleurectomy in the treatment of malignant mesothelioma includes the complete decortication of the lung (resection of visceral pleura) and the parietal pleura. Patients are placed in a full lateral position after placement of a double-lumen endotracheal tube. A posterolateral thoracotomy incision is made, completely dividing the latissimus muscle, and the chest is entered through either the fourth

or fifth interspace. Occasionally, the serratus muscle can be spared, but usually must also be divided to have adequate access. An additional eighth or ninth interspace thoracotomy within the same skin incision may be necessary for adequate exposure of the inferior thorax.

Pleurectomy involves the complete resection of both visceral and parietal pleura and can include both pericardial and diaphragmatic resection, as well as resection of additional lung nodules. The parietal pleura is first dissected off the chest wall and then the mediastinum. The pleura is then opened and the visceral pleura removed. Although the procedure can allow extensive debulking, it is not generally possible to attain complete macroscopic debulking of tumor with this procedure.

Postoperative management requires good pain management with epidural catheters, intravenous patient-controlled analgesia, intercostal rib blocks, or a combination of these maneuvers. Aggressive chest physiotherapy with early ambulation, incentive spirometry, and other methods of sputum mobilization are used to prevent atelectasis and pneumonia. Chest tubes are placed to evacuate both fluid and air. Sclerosing maneuvers (i.e., talc, doxycyline) are often necessary to seal persistent air leaks.

http://ats.ctsnetjournals.org/cgi/reprint/78/1/245

This article is partly written by Dr Waller and Dr J Edwards. I haven’t copied any across for you to sample due to set up of pages etc but it is worth a read. Please don’t be put off by numbers again as the journal was written in 2004 and again surgery has come a long way from then.

 

Information
  Click on the headers below for section information
Standard Chemotherapy

The standard mixture at the moment is

Premetrexed (Alimta) and Carboplatin or

Premetrexed (Alimta) and Cisplatin

There are other chemotherapies on trial but at the moment these are the front runners.

Originally the odds proved Alimta gave an additional 1 yr and 3 months maximum life expectancy.

Alimta was on trial in USA back in the late nineties but didn’t trial in the UK until 2000.

There has been a lot of news regarding Alimta, many health authorities refused to fund the drug and deemed it expensive as it only works with 40% of mesothelioma patients.

Research studies have been carried out to try and find out which type of people work with Alimta and which don’t. 

Like all treatments it can either suit you or not, I was unlucky with Alimta although I did get some remission, yet I know that others have had remission for 3 years plus.

Webpage for more detailed information on alimta

www.alimta.com/

Chemo-Embolisation

This treatment has been tried and proved a success by Debbie Brewer and she has promoted this treatment for many years. We have both sent his contact details out to many people and at time of writing Prof Vogl had addressed the National Lung Meeting. There is hope that his treatment may become available in the UK but like everything else in our NHS it will take a long time in coming.

For more of an insight into Prof Vogl’s treatment please visit Debbies website on:

http://www.mesothelioma-and-me.com/

Prof Vogl sent this information to me for use on the website

Mesothelioma: New Possibilities

 

For Locoregional Treatment

Thomas J. Vogl, Nagy Naguib, Thomas Lehnert, Emanuel Mbalisike, Stefan Zangos, Hydayi Korkusuz, Sebastian Lindemayr

Address for Correspondence

Thomas J. Vogl, MD

Institute for Diagnostic and Interventional Radiology

Johann Wolfgang Goethe-University Frankfurt

Theodor-Stern-Kai 7

60590 Frankfurt am Main

Tel.: +49 69-6301-7277

Fax.: +49 69-6301-7258

e-mail: T.Vogl@em.uni-frankfurt.de

Introduction

Malignant pleural mesothelioma is a tumor with an increasing incidence as a result of widespread exposure to asbestos. Generally it has a poor prognosis. Although in the past few years new forms of chemotherapy have become available for mesothelioma which can improve survival to a modest extent all strategies should be directed to alleviate symptoms and improve life quality. However, the benefits of currently available agents are limited.

There is a broad interest in current concepts of interventional oncology procedures, such as localized therapies like intraarterial chemotherapy and thermal ablation techniques like radiofrequency ablation (RF), laser-induced thermotherapy (LITT), and microwave ablation (MWA)

Current Study and Therapy Planning

In our current treatment protocol we use two different techniques: transpulmonary chemoembolization (TPCE) and transarterial chemoperfusion (TACP). The TPCE technique is based on a selective intrapulmonary application of the chemotherapeutic agents to the pulmonary artery via transvenous access. Using TACP a local intraarterial chemotherapy is administered directly into the tumor via transarterial approach.

Materials and Methods

Between 2008 and 2009, 15 patients suffering from pleural mesotheliomas were treated with transpulmonary chemoembolization. Treatment was repeated between 1 and 7 times with a mean of 2.4 sessions. Mean age was 65.1 years, female to male ratio was 2 / 3. Tumor feeding arteries were selectively probed after puncture of a femoral vein and 5 to 10 ml Lipiodol and 5 to 10 mg of Mitomycin C as well as microsphere particles (Spherex) were administered during balloon protection. At 4-week intervals, diagnosis and follow-up were accomplished by using unenhanced as well as contrast-enhanced computed tomography.

Results

All patients tolerated the repeated treatments without adverse effects. Neither complications nor influences on laboratory parameters were observed. 2 patients were lost to follow up, in 23.1% (n=3) of the remaining patients (n=13) moderate to high Lipiodol uptake was found while in 76.9% (n=10) of the treated tumors a low Lipiodol uptake was found in 23.1% (n=3) of embolized lesions, tumor volume was resolved to a mean of 44.6%. In 61.5% (n=8) tumor volume remained unchanged while in another 15.4% (n=2) volume increased to a mean of 34.7%. Two patients died 186 and 86 days after the initial treatment, respectively. The other patients are still alive. In summary, a respectable local control of pleural mesothelioma was achieved in a palliative therapy concept.

Conclusion

According to these findings transpulmonary chemoembolization and pulmonary chemoperfusion are well tolerated procedures for the palliative treatment of pleural mesotheliomas. However, further studies are still necessary.

Literature

Vogl TJ, Lehnert T, Zangos S, Eichler K, Hammerstingl R, Korkusuz H, Lindemayr S (2008) Transpulmonary chemoembolization (TPCE) as a treatment for unresectable lung metastases. Eur Radiol 18 (11): 2449-1455

Vogl TJ, Herzog C, Zangos S, Lindemayr S (2007) [Palliative treatment of primary lung tumors with transpulmonary chemoembolization (TPCE)]. Rofo 179 (3): 300-7 [Article in German]

Vogl TJ, Wetter A, Lindemayr S, Zangos S (2005) Treatment of unresectable lung metastases with transpulmonary chemoembolization: preliminary experience. Radiology 234 (3): 917-22.

For my own research this is the information I found back in 2007

This article was written in 2005 from which I took a small extraction.

Transpulmonary chemoembolization (TPCE) was evaluated as a new treatment for unresectable lung metastases. Institutional review board approved and patient consent were obtained. In 23 patients, 26 lung metastases of different origins were treated locally by using a transpulmonary approach. After femoral vein puncture, tumour-supplying pulmonary arteries were selectively explored and 5-10mg mitomycin C and 5-10ml iodized oil and microsphere particles were applied with balloon protection. Diagnosis and follow-up (3 month intervals) were performed with unenhanced and contrast material-enhanced computed tomography (CT). Treatment was well tolerated in all patients, with no major side effects or complications. As indicated by using morphologic criteria, volume regression of embolized areas was achieved in eight patients, while stable disease was revealed at follow-up in six patients. In nine patients, progression of treated intrapulmonary metastases was recorded. TPCE could be well-tolerated palliative treatment option in patients with pulmonary metastases.

Published online before print 10.1148/radiol.2343032091

Radiology 2005: 234:917-922

The full article goes on to show CT images of how it treats cancer together with a full explanation of its findings.

Also another good article is a Question and Answer session with Prof Vogl on this webpage

http://www.mesotheliomacom-news.com/asbestos/mesotheliomanews/535aq26awithdrvoglaboutmeso.html

You can reach Professor Vogl on this email address T.Vogl@em.uni-frankfurt.de

If you didn’t understand what it means, they make an incision into one of your main veins, ie. Top of leg\groin area and cannulation to the vein. Once the tube is in the correct position they release the chemotherapy directly into the area.

By doing the treatment this way the Chemo isn’t going right through your body to reach the tumour, it reduces side effects as it isn’t making contact with other organs until it leaves the system.

Information
Cryo-Ablation

Currently this is not available in the UK and it is a shame. 

I truly believe we need to get this form of treatment in the UK, I believe it can be used as palliative as well as preventative

Article submitted by Dr F Abtin on Cryo-ablation

Management of mesothelioma has been among the most challenging of cancer therapy. Most decisive factor in survival remains stage at diagnosis and type of mesothelioma, with epitheloid type having better survival compared to sarcomatous type. Chemotherapy has shown little success in increasing survival. Although not curative, best results to improve survival comes from patients surviving surgery namely pleurectomy (decortication) or extrapleural pneumonectomy, in combination with chemotherapy and radiotherapy. Both the surgical procedures are associated with morbidity and mortality and require expertise such that only few surgeons have the stamina or dare take on these operations. Almost all patients who undergo surgery have recurrence at some point in their disease course. 

Cryoablation is an alternative minimally invasive procedure used in adjunct with standard therapies described. Cryoablation uses principles of cold temperature dissipation to induce thermal injury in target tissues. The applicators allow conduction of compressed argon gas in applicators interior hollow chambers (large needle approximately 2 mm in diameter) which in turn lead to subzero temperatures in the applicator and surrounding tissue [1], forming an ice ball (cryo zone) which will kill any cells it engulfs. Currently the maximum size of iceball attained remains at 4 cm, which limits ablating large tumors. Although multiple applicators can be used to reach larger ice balls (with the maximum ice ball obtained by my team being 9 cm), it does come with increased risk of morbidity [2]. 

Currently there is handful of centers with enough expertise to use cryoablation in management of mesothelioma. The principal indications to improve survival include ablation of localized invasive tumor to make the patient eligible for surgery and ablation of tumor following recurrence. As mentioned previously almost all patients have localized recurrences and are ineligible for repeat surgery. Cryoablation can be performed on multiple lesions at a time. Infrequently, I have ablated up to four lesions in a single ablation setting. Another set of indications for cryoablation is palliative control of pain. These tumors invade the chest wall and the ribs and can cause neurogenic and osseous pain. Even though the survival may not increase, most of my patients have had improved quality of life after cryoablation. I have found cryoablation a safe and relatively quick method to control pain. Finally, cryoablation has been used for focal control of tumor invading into vital organs like heart to improve quality of life or even survival. Like all procedures there are some risks involved particularly hemorrhage and damage to vital structures, which needs to be considered while selecting patients.

Mesothelioma management requires multidisciplinary, strong and individualized approach to control the tumor early in the course to improve survival or quality of life.

Hoffman, NE, Bischof, JC. The Cryobiology of cryosurgical injury. Urol 2002; 60(supple 2a):40-49.

Fereidoun Abtin MD, Carol Wu MD, Ali Golshan MD, Robert Suh MD. CT guided percutaneous cryoablation of thoracic tumors: technical feasibility, early efficacy and imaging of 27 treated tumors. Scientific session 8, #713, 2nd World congress of Thoracic Imaging and Diagnosis in Chest disease. Valencia May 30-June 2, 2009.

An article I found on the internet:

http://www.asbestos.com/news/2009/03/03/mesothelioma-patient%e2%80%99s-hope-renewed-with-freeze-therapy/

Cryo is a form of energy that is used to destroy the tumour. All tumours can be destroyed (apparently) by the use of energy but whether it kills them off completely is still under review. I know that where the cryo was used on my tumours that it would have been impossible for the meso to regrow on the same spot but as I had so many of the blighters I would have needed a needle\probe placed every 5mm all around my chest. I strongly believe that cryo can also reduce pain as if the tumour is on a nerve and is blasted the nerve then is released and pain is reduced.

I remember Dr Owens telling me that the tumours where like seeds and once the tumour got to a certain level it released seedlings which implanted into the lining and started to grow then they too send out seedlings which in turn grew and so forth. If we could eliminate those first tumours hopefully we can stop or hold back the pattern of seedlings planting themselves in our pleura. But nothing is that simple.

Recently published on the American Association of Thorasic Surgery

 

R.B. Cameron, A. Rorie, Cardiothoracic Surgery, UCLA and the West Los Angeles VA Medical Center, Los Angeles, CA; F. Abtin, R. Suh, Radiological Sciences, UCLA, Los Angeles, CA; J. Sandberg, David Geffen School of Medicine, UCLA, Los Angeles, CA; R.B. Cameron, Division of Thoracic Surgery; Dept of Surgery, West Los Angeles VA Medical Center, Los Angeles, CA;

ABSTRACT BODY: Objective(s): To assess the efficacy and morbidity of performing percutaneous cryoablation of localized pleural recurrences following pleurectomy for mesothelioma

Methods: Following IRB approval, we retrospectively reviewed our prospective thoracic surgery database for patients who were identified as having one or more percutaneous cryoablation treatments for localized recurrences following surgery for mesothelioma Results: We identified 21 patients who had previously undergone pleurectomy and radiation for malignant pleural mesothelioma. The mean patient age was 63.8 with 8/21 (38.1%) female and 13/21 (61.9%) male. The histologies were 18/21 epithelioid predominant (85.7%), 2/21 mixed (9.5%), and 1/21 (4.8%) sarcomatoid. The 21 patients underwent a total of 82 treatments (82 lesions) with a mean of 3.7 (range 1-16) treatments/lesions/patient. Lesions treated measured a mean of 31.7 (range 9-113) mm in diameter. Each lesion was treated with a mean of 1.7 (range 1-4) probes and to a mean of 2.65 (range 2-4) cryo cycles. 81/82 (98.7%) lesions were completely treated (as measured by PET) following one therapy. The single failure was early in our experience and resulted from incomplete treatment of a large 60 mm lesion. The morbidity was very low and consisted of pain, hematoma, small pneumothorax, and hemoptysis in one patient each and erythema in 2 chest wall lesions 6/83 (7.3%) All patients were treated as outpatients.

Conclusions: Cryoablation of localized malignant pleural mesothelioma recurrences is the preferred adjunctive method of local control with an very low morbidity rate and a very high efficacy rate and should be used in preference to other therapies including surgery.

 

Radiotherapy

Originally Radiotherapy was carried out on the drain site area’s.  This was to ensure that tracking of the mesothelioma was not able to spread through the cavity to the outer layers.

Mesothelioma is known to push its way through the body and form large hard lumps just under the skin.

The use of radiotherapy has been in debate for many years and today there is still no agreement on the use of treatment after surgery.

It can also be used as a palliative treatment to aid in the breakdown of mesothelioma cells that sit on areas of the body that cause immense pain. 

Radiotherapy is not a cure nor can it totally destroy the mesothelioma.  1 cm of disease holds approximately 1 billion cancer cells, which for radiotherapy to work would have to be at an extreme power that would damage other organs.

Recently a new form of radiotherapy has stepped up, known originally as Tomotherapy.

Radio Frequency Ablation

I looked at this in October 2007 and then again in 2010

The only draw back to RFA is the size. The tumour has to be smaller than 2cm and not many oncologists are for this treatment.

I wrote to

The London Oncology Clinic

95 Harley Street

London

W1G 6AF

 

This is similar to Cryo-ablation but heat is used to burn the tumour off.

You will hear from some oncologist’s that this won’t work as it is a localised therapy, yet they tell you that mesothelioma is a localised cancer!

You can find quite a lot of information on the internet for this.

Cancer backup is a good site to start.

The one good thing about this treatment is that it is done in the UK, privately was the only way when I checked it out. I believe its about £10,000.

Cyber-Knife

Dear Ms. Egerton,

I am very sorry to hear you have been diagnosed with mesothelioma. Some ‘meso’ patients can be helped if there is a mass to treat. I know of some cases of meso that has been treated in the lung and in the peritoneum. If the cancer is broad or large then stereotactic radiation might not be the best approach. It’s really best to have a trained physician review your case. You are in the UK? Have you spoken to anyone yet at the Harley or London clinic? I would imagine that the London Clinic might have more liberal protocols but it’s best to check with both. I can also put you in touch with MDs here in the US that have treated patients with the CyberKnife for this cancer. See UK and USA contacts below:

UK, London:

The London Clinic, +44 (0) 20 7935 4444, UK, Dr David Landau, Consultant Clinical Oncologist, david@landau.me.uk, +44 (0) 20 7935 4444

UK, London:

Harley Street Cancer Centre, 81-83 Harley Street, London W1G 8PP, UK, Telephone + 44 (0)20 7935 7700, http://www.theharleystreetclinic.com, Dr Christopher Schelvan, MD Radiation Oncologist 020 7034 8361, Christopher.schelvan@imperial.nhs.uk

USA, Oklahoma:

Clinton (Buddy) A. Medbery III MD, Medical Director, Radiation Oncology, St. Anthony's Hospital, Oklahoma City, OK, (405) 272-7311, buddy@swrads.org

USA, California:

CyberKnife Centers of San Diego, Inc, San Diego, CA (858) 505-4100, Donald B. Fuller MD, Director, Radiation Oncology, Western Cancer Center, (858) 505-4100, dfuller@rmgmed.com

Please keep me posted if you are inclined because we are trying to keep tabs on our UK patient base.

Best wishes,

Catherine

Catherine Bonetti

Patient Relations Manager

Accuray Incorporated

http://www.cyberknife.com

www.accuray.com

The following was submitted via M Pepper for use on the site:

Enquiries

The CyberKnife Centre London started treating patients mid-February 2009.

We already have a list of patients who have been accepted for treatment, so any new referrals may have to wait a month or more for treatment after acceptance at the MDT.

 

Referral Process

The referral process at The CyberKnife Centre London is as follows:

All referrals have to be made in writing by a Consultant. This is required under UK law, whereas in the US, patients can self-refer. The patient’s consultant oncologist/surgeon will need to write a letter to “Dear Doctor” at The CyberKnife Centre with details of their case. The letter will be given to the Consultant with expertise in that individual’s cancer. They will then reply to the referring clinican.

All relevant medical details will need to be sent to the CyberKnife Centre along with all imaging (on a CD) and imaging reports. Address for The CyberKnife Centre:

‘Consultant Clinical Oncologist’

The CyberKnife Centre London

The Harley Street Clinic

81 Harley Street

London W1G 8PP

The patient’s case will then be discussed at a Multidisciplinary Team Meeting (these are held twice monthly). This MDT is comprised of experts in the field of stereotactic radiosurgery/radiotherapy. At one of these meetings, a formal decision will be made as to whether the patient will be suitable for CyberKnife.

The patient will be prioritised, and appointments for treatment discussed and agreed with them (please note that funding arrangements for the treatment need to be resolved before planning for the treatment can commence).

Costs of CyberKnife Treatment

Regarding the costs for a course of treatment: these will be in the region of £20,000 per course of treatment to one area (this is exclusive of Consultant’s fees, which are charged separately and are at least £1,500).

There will be ‘package’ prices for Insured patients, or patients referred for treatment by their Embassies. These costs are of a similar amount.

If the patient is insured, it is the patient’s responsibility to approach their insurance company direct for the forms, which they are to complete and return. The insurance companies will then send out the pre-authorisation codes. Please note that we must have an “authorisation code” before we can issue appointments for treatment (this is because in one case we didn’t, and ended up treating the patient for free). The major insurance companies all know about CyberKnife.

If patients wish to seek NHS funding

If they wish to be considered for NHS treatment, they will need to approach their PCT (Primary Care Trust). Their GP will have details of how to contact the PCT. Their GP/oncologist will need to write a letter to support their case, and the process may take some time (4-8 weeks).

If the enquirer can’t wait for treatment at HSC

The patient can access contact details of all of the CyberKnife facilities Worldwide by entering http://www.accuray.com/ into any search engine (e.g. Google). Halfway down the homepage, there is a ‘Patients’ section. Click onto ‘CyberKnife Locations’ and then under ‘country’, click onto the country of choice. They will see a list (with contact details) for all of the facilities in that country.

Patients can access specific information regarding CyberKnife treatment by visiting the CyberKnife Society website on http://www.cksociety.org/.

Ronnie Locke

HCA-Connect

Prospect House

80/110 New Oxford Street, London WC1A 1HB

Tel: + 44 (0) 20 7079 4399

Fax: + 44 (0) 20 7079 4310

Information
MISTLETOE - For Its Use

Mistletoe is available under some NHS Trusts.  Park Attwood use to supply the prescriptions until they closed, but I have heard that you should only inject 3 times a week in different places for no more than 3 months at any one time.  I haven't tried it but if it gets the immune system up and running it could be a good place to start.

If you remember as a child being told that on no account should you eat the berries of the mistletoe as certain death was sure to result, it may come as something of a surprise to learn that this supposedly highly toxic plant is now widely used as one of the treatments in the fight against cancer. Please do not eat the berries until further research has been done. Also, never use it for cancer treatment without your doctor's approval.

A parasitic evergreen, growing high in the branches of soft wood trees such as apple, pear, poplar, ash and less often, on oak, has long been venerated for its medicinal properties by many cultures throughout Britain and Europe. The ancient Druids held the plant almost as sacred as the oak and would only cut it with a golden knife during the sixth day of the moon. Its hallucinogenic properties were greatly prized and they used it as a cure-all for headaches, infertility, arthritis, epilepsy and other kinds of nervous disorders.

Traces of its use have even been found among Native Americans who brewed it into a tea and used it for headaches, lung diseases and a cure for love sickness.

 

Now the healing properties of mistletoe are being utilised in the fight against cancer with some interesting research and clinical trials showing that extracts of the plant seem to have an inhibiting effect on tumour growth, and increase the plasma B-endorphin levels which directly affect pain and mood levels in patients undergoing chemo and radiation therapy.

These mistletoe derived drugs have not undergone the necessary clinical trials in the US and so are not available for use as cancer treatment, but in Europe and Asia they are readily available and are marketed as anti-cancer drugs, Iscador, Eurixor, Helixor, Isorel, Vysorel, and ABNOBviscum.

It is in Europe and Asia that most of the research surrounding the effectiveness of mistletoe has taken place.

The drug is given as an intramuscular or subcutaneous injection, sometimes in the vicinity of the cancer tumour itself or as an intravenous infusion.

Although clinical trials are sparse and the results from which have proved rather inconclusive, mistletoe seems to combat cancer in two distinct ways.

One is by directly attacking cancer cells by stimulating the immune system into releasing certain chemicals that are damaging to tumours. Trials with one of the mistletoe derived cancer drugs, IscadorM also suggests that this is achieved without causing damage to the immune system cells, a common side affect of many cancer inhibiting drugs.

IscadorM was also found to improve DNA repair in breast cancer patients, which is damaged by chemotherapy and radiation therapy. Poor DNA repair in white blood cells critical to cancer survival is common in cancer patients and decreases the white blood cells ability to recognize and remove malignancy.

In an experiment conducted on patients with advanced breast cancer, one dose of IscadorM was given intravenously, followed by daily subcutaneous injections for seven days. Blood samples were studied for DNA repair mechanisms in white blood cells. At days seven and nine, there was a 2.7%-fold average increase in DNA repair, with 12 out of 14 of these patients showing improvement.

Encouraging results have also been obtained in trials where patients have shown marked improvement in quality of life and a more positive out look after taking a small non-toxic dose of galactose-specific lectin.

This seemed to activate a non-specific immune defence response and increase plasma B-endorphin levels which is believed to have a moderating effect on pain and mood in cancer sufferers.

One study undertaken on patients with advanced pancreatic cancer showed that although mistletoe did not decrease progression of the disease, it did improve life quality.

Patients were given subcutaneous injections of the EurixorTM preparation twice weekly, but no other treatments. Questionnaires filled in by the patients indicated that quality of life was stable, which is surprising in patients undergoing cancer therapies , especially where pancreatic cancer is concerned as it has such a poor prognosis.

Another trial on patients with advanced brain tumour showed that EurixorTM enhanced immune function and improved quality of life during radiation therapy.

Patients were randomly split into two groups and given either subcutaneous injections of mistletoe extract twice weekly for three months plus standard cancer treatments or standard cancer treatments alone.

The patients receiving mistletoe showed a significant increase in the number of white blood cells and overall immune function. Further trials seem to suggest that using mistletoe in conjunction with other therapies can decrease some of the side effects of radiation therapy and chemotherapy

Research done in laboratories indicates that mistletoe extracts may even stabilise DNA and prevent it from mutating. It this does prove to be the case, then mistletoe may not only help prevent cancer, but prove useful when used with chemotherapy in avoiding tissue damage.

Unfortunately, much of the research and evidence surrounding mistletoe as an anti-cancer treatment is inconclusive. This is due mainly to the small number of trials taking place and the poor documentation that surrounds some of them. Other factors play their part in producing inconclusive results, such as the varying quality of the mistletoe, when it was harvested, what tree it grew on and what part of the plant was actually used.

The good news is that warning your mother gave you about eating mistletoe berries may not prove as lethal as she predicted. Tests under taken in Germany prove that the berries of the European mistletoe are only slightly toxic and the leaves not at all. Studies of people, including children, who had eaten the berries showed that the vast majority, although suffering symptoms as diverse as convulsions, headaches, stomach upsets and distorted vision all recovered without medical aid.

Although not lethal, it is not recommended that the berries are eaten or that home made cancer remedies are made from mistletoe extracts.

This information was Found on the following website:

http://www.essortment.com/all/mistletoeameric_ryqm.htm

MISTLETOE - Against it's use

Mistletoe as a treatment for cancer

Has no proved benefit, and can cause harm

Most doctors in the United Kingdom will be surprised to learn from a case reported in this week's BMJ of a use for mistletoe (Viscum album) that has nothing to do with Christmas.1 Some patients with cancer inject themselves with extract of mistletoe in the hope of improving their condition. In continental Europe, at least 30 different mistletoe preparations are available. In Europe, most cancer patients use such extracts, at a total expense of about £30m (45m; $59m) each year,2 and in Germany the insurance system pays for this treatment.

A Google search (20 November 2006) showed that 145 000 websites promote or mention mistletoe as a treatment for cancer. This much publicity may mean that many cancer patients in the UK will try mistletoe in the future or ask their doctor about it. It is therefore timely to discuss the value of mistletoe as an anticancer drug.

A century ago, Rudolf Steiner developed anthroposophy, a school of thought that led to innovations such as the Waldorf schools, biodynamic farming, and anthroposophic medicine. This approach to healthcare is based on intuitive thinking about assumed associations between four postulated dimensions of the human body (physical body, etheric body, astral body, and ego), plants, minerals, and the cosmos.3

Anthroposophic medicine includes drugs, art therapy, rhythmic massages, special exercises, external applications, counselling, and anthroposophic nursing. These treatments are used "partly as adjuncts to and partly as substitutes for conventional medicine."4 Anthroposophic drugs are based on ancient alchemistic and homeopathic notions, far removed from the concepts of pharmacology. Many of these drugs are produced in unusual ways—some mistletoe preparations are fermented while other anthroposophic drugs are highly diluted according to homeopathic principles.

Steiner's intuition that mistletoe might help treat cancer is based on the fact that, like cancer, mistletoe is a parasitic growth that eventually kills its host. Inspired by Hahnemann's "like cures like" principle, he believed that an extract of mistletoe would cure cancer. Despite the implausibility of this idea, about 1000 in vitro studies have shown that mistletoe or its main constituents (alkaloids, lectins, and viscotoxins) do have anticancer activity.2 5 However, many plants have some sort of anticancer activity.6 Occasionally, this is useful therapeutically—vinblastine and vincristine are derived from the common periwinkle and Taxol comes from the yew tree. In most cases though, toxicity or lack of bioavailability prohibit the use of these compounds.

 

Proponents of anthroposophic medicine make two claims about mistletoe. Firstly, they claim that regular injections of mistletoe extract improve the natural course of cancer by slowing down or stopping tumour growth. Secondly, they say that such extracts improve the quality of life in patients with cancer.4

Many clinical studies of mistletoe exist, but their findings are inconsistent. Most of them are methodologically weak, and the less rigorous they are the greater the likelihood of a positive result. The conclusions of systematic reviews are therefore contradictory. Anthroposophical doctors, who tend to include unreliable primary studies, arrive at positive conclusions.4 In contrast, independent reviewers tend to focus on the most reliable evidence and regularly find that neither of the above two claims is supported by good evidence.7 8 9

In this week's BMJ, Finall and colleagues report a case of subcutaneous inflammation mimicking metastatic malignancy induced by injection of mistletoe.1 So how safe is this treatment? A wide range of serious adverse reactions have been noted, such as local reactions at the site of injection, anaphylaxis, dyspnoea, haemorrhagic colitis, herpes simplex, herpes zoster, joint pain, kidney failure, lymphangiitis, parasthesias, sarcoidosis, ulceration, and vertigo (Saller R. Zu den unerwuenschten Nebenwirkungen von Mistelpraeparaten. Drittens Mistelsymposium Otzenhausen, 20-22 November 2003).10

Findings from in vitro studies suggest that mistletoe extract may enhance the proliferation of some cancers.11 In addition, some patients with cancer may use mistletoe as an alternative to conventional treatments for cancer, rather than just a complementary treatment.

The claim frequently voiced by proponents of anthroposophic medicine—that mistletoe injections have no serious risks4—is therefore misleading.

Thus, mistletoe has been tested extensively as a treatment for cancer, but the most reliable randomised controlled trials fail to show benefit, and some reports show considerable potential for harm. The costs of regular mistletoe injections are high. I therefore recommend mistletoe as a Christmas decoration and for kissing under but not as an anticancer drug. At the risk of upsetting many proponents of alternative medicine, I also contend that intuition is no substitute for evidence.

The link to this document is: 

http://www.bmj.com/cgi/content/full/333/7582/1282

COMPLEMENTARY - Aromatheray, Rekki and Acupunture

 

AROMATHERAPY

When I was diagnosed I was told that massage’s were out of the question but this has been proved to be a bit of an old wives tale. Since 2005 I have had aromatherapy once a week.

The two main reasons I have found it good are

My legs use to ache and having someone know what they are doing and getting aromatic oils massaged in is wonderful, indeed anywhere on your body is wonderful.

This gives you and your partner space from each other.  It is a total pamper session for the pair of you.  It’s relaxing, mentally stimulating and a good switch off from the troubles of life.

If your partner is your registered carer then you can have 6 treatments for next to nothing, I think you have to pay a minimum of £5.00, but this is upto your local authority on how much they charge.  For the patient you should get this free from your local hospice but ask at your GP’s for information.

I pay £25 per week each at our local health centre.  That’s for one hour and it has always been the highlight of my week.

I don’t know whether it does anything for the cancer but if you can lift your spirits as well as your partners then it’s worth every penny.

 

REKKI

Is the use of universal energy being directed into your body.  It leaves you feeling extremely relaxed.  I took advantage of 6 free sessions at the James Cook Hospice and I thoroughly enjoyed the relaxation.

You can find masters of Rekki usually advertised in your local newspaper or ask your local hospice for a recommendation.  I have no idea on cost per session.

ACUPUNCTURE

Not for those who hate needles.  I have had a couple of tries but it isn’t for me.  It can be a wonderful painkiller.

Again ask your local hospice for a good recommendation.  Many of the hospices have these therapies held on their premises.

If you are unable to sleep on a night then try this, your body is resting and hopefully after it you will fall into a nice deep sleep.

 

HEALING and MEDITATION

SPIRITUAL HEALING

I have been back and forwards for years with healing but since last May 2008 I have attended a healing service once a week.

You don’t have to be religious, there are no gimmicks or people dressed in white sheets, if there were you would see the healers run never mind the patients.

Imagine a hot water bottle being placed on you when you have backache.  Well the hands of the healers are the same.  The relief that heat brings is indescribable and I don’t care what you now think of me but I believe it can help.

Check you local Spiritualist Church or in deed many other denomination Churches to find out about the service, it’s usually an afternoon and all it takes is an hour out of your day.  You can also ask your local GP for information as this is now recognised as a complementary therapy by the British Medical Council.

The cost of healing is free but it is hoped you leave a small donation in the bowl, whether its 2p or £2 it all goes to keeping the building open.

You will be surprised how many people actually go.

Having done further research into how healing works I can tell you that it starts from the spirit outward.  Your thoughts are part of your spirit.  The idea is that if your spirit is uplifted it can reboot your body and start working on the problems within.  Your mind is a powerful tool anyway as it is pure energy and using this energy correctly by positive thinking can help you achieve more time.  If we can hold on and keep the cancer at bay you never know what medical treatments are being tried and tested which one day may be used to eradicate this disease.

 

MEDITATION

If you look on the internet you will find there are many styles of meditation, all for the same aim to help clear your mind, body and spirit.  It is a form of self help, clearing out negative thoughts and resting the mind.  If you buy a recorded meditation just try and picture what is been said, this way you are resting your own mind and just using it to bring about images they are asking you to see.  It needs concentration and self discipline otherwise your mind goes off on its own and you end up with no benefit.

If you are unable to sleep on a night then try this, your body is resting and hopefully after it you will fall into a nice deep sleep.

Other
For information on herbs, honey etc that anyone can inform me about.
Information
Better Testing

Scientists claim they have developed a more sensitive test for the asbestos-related cancer mesothelioma.

The cancer develops long after exposure to asbestos but patients usually have a limited life expectancy.

The test developed by a team at Oxford University looks at levels of a protein closely linked to the cancer in fluid around the lungs.

A UK lung expert welcomed the American Journal of Respiratory and Critical Care Medicine study.

“A simple test which can exclude the diagnosis without resort to more invasive methods would be welcomed “

Dr Paul Beckett, British Thoracic Society

Mesothelioma is an invariably fatal tumour found in the surface of the lung. While relatively rare, it is very difficult to treat because of its location and because it does not seem to respond well to chemotherapy.

The disease has been found in people with no history of exposure to asbestos, but inhaling the dust released by the mineral when it is broken up is known to be a key risk factor.

It has particularly affected tradesmen such as joiners, plumbers and electricians.

Because it can take many decades for the disease to develop, experts expect the number of cases in the UK to peak at around 2,200 by 2013.

Laws preventing occupational exposure to asbestos are in place in the developed world. There are no such restrictions in developing countries, however.

High levels

The researchers focused on ways of distinguishing mesothelioma as a cause of pleural effusion, the build-up of fluid in the pleural cavity surrounding the lungs.

There are many causes of this symptom, many of which are benign or linked to other types of cancer but over 90% of people with mesothelioma have the symptom.

At the moment, doctors carry out pleural fluid cytology - a lab test which looks for cancerous cells.

However the Oxford team say this is not a very sensitive test.

Team members used pleural fluid samples from over 200 patients who had been referred to a specialist respiratory clinic.

They then looked at levels of the protein meothelin - which is released in high quantities in the pleural fluid of most patients with mesothelioma.

It was found that levels of the protein were almost six times higher in patients with the cancer than in those with secondary lung cancers, and 10 times greater than those with benign conditions.

Rapid diagnosis

Dr Helen Davies, who worked on the research, said: "This study suggests a way for clinicians to more readily identify cases of mesothelioma from the start."

She added: "Because mesothelioma has a median survival time of 12 months, minimising the number of invasive procedures and tests patients require is crucial to reduce morbidity and the time they need to spend in hospital.

"An earlier diagnosis also allows speedier interventions to relieve symptoms as well as initiation of other treatments such as chemotherapy or radiotherapy if appropriate.

"Claims for worker's compensation may also be instigated once the diagnosis is confirmed."

Dr Paul Beckett of the British Thoracic Society said: "A simple test which can exclude the diagnosis without resort to more invasive methods would be welcomed, allowing a more streamlined diagnostic pathway both for those with and without the disease.

"Such a pathway would be expected to lead to more rapid diagnosis and therefore treatment and perhaps improve the outlook for this disease, as well as avoiding unnecessary tests in those who don't have mesothelioma."

Professor Stephen Spiro, of the British Lung Foundation, said: "This study is an important step forward, as it could lead to earlier diagnosis and better treatment of mesothelioma which is vital as currently most patients diagnosed with this disease live less than 12 months."

Optimism abounds for treating mesothelioma with gene therapy

Mar 9, 2012

A prominent gene therapy expert said that he hopes to turn mesothelioma from a death sentence into a nagging, but manageable chronic disease.

Dr. Dan Sterman, a doctor at the University of Pennsylvania School of Medicine, said scientists are working to combat the deadly disease caused by asbestos exposure with gene therapy, a relatively new science that uses DNA to fight illness. Sterman spoke this week on a teleconference sponsored by the Mesothelioma Applied Research Foundation.

He remains optimistic that gene therapy will one day take the place of mainstream treatments for mesothelioma. Sterman has already seen long-term health improve in at least two patients who first received gene therapy treatment more than 10 years ago.

Mesothelioma is a tumor that can develop in the lining of the lung, abdomen and heart. About 3,000 in the United States are diagnosed with the cancer every year. There is no cure for mesothelioma.

But Sterman said that gene therapy can improve that bleak prognosis. He said that some patients have lived 10 or more years after receiving only gene therapy. An Australian woman, he said, was treated with gene therapy alone in 1998. She is still alive without having surgery or chemotherapy, Sterman said.

Sterman added that the woman sometimes gets the symptoms of pleurisy, but the cancer hasn’t redeveloped. It gives Sterman some hope that the body can remember how to attack cancer cells years after gene therapy.

Gene therapy is a relatively new field of medicine. It began a little more than 20 years ago when scientists discovered that genetic abnormalities lead to certain diseases. Doctors soon discovered that they could alter genes to correct the abnormalities.

Despite this advancement, a cure has been elusive, Sterman said. In some cases, however, prompting the body to fight its own battle has slowed or eliminated cancer cell growth.

Sterman is enrolling candidates into his gene therapy trial. Those who were recently diagnosed are prime candidates for the trial. Sterman said that gene therapy is most effective when the cancer is in its early stages.

Although Sterman works in Pennsylvania, he said that clinical trials have become more willing to accept patients in all parts of the country. Sterman said that patients can sometimes avoid long cross-country trips by having a local surgeon provide certain trial procedures.

For more information on Sterman’s trial, contact the Abramson Cancer Center at 1-800-789-7366.

ADAMS TRIAL

This started recruiting in 2011 but here is the info that I have for it.

Please open the PDF

3.1 ADAM Protocol version 5_10 Dec 2010_clean

Other

I am terrible at updating things and have used my blog as a further place to post info that I get.

http://mesothelioma-treatments-jan.blogspot.co.uk/

 

 

 

Contact info

If you can offer any information that can help other Mesothelioma Sufferers, no matter how small then please email me on

jan@jansjourney.co.uk

We need all the support we can get as this epidemic hasn't even started yet - Don't believe the statistics - this hasn't even peaked yet.

All those council houses that we have all done DIY work to, all those new bathrooms fitted and the old soil pipes removed.

Don't let mesothelioma ruin your life or that of your family, act now.

Lets Kill This

Photo of MesoNot a pretty sight - my mesothelioma

Before it kills

Recovery This isn't me dying, its a photo of me just after surgery but it is a reminder of how bad things can be.

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