Tag Archives: cancer

In memory of a meso warrier

Heard today the sad news about Ronny, had so hoped for some good news after her last update. Thoughts must be with her family at this time. When I first heard the name mesothelioma, Ronny’s blog was one of the first I found and it helped us both at a terrible time.

It seems so shocking how quickly this has all happened, a sharp reminder of how precious this time is together.

Another PET scan

Well the new scan is booked for tomorrow , so another fun packed three hour hospital visit . The PET scan takes a lot longer than the CT, as once they have injected the radioactive glucose, which takes around 30 mins, you then have to rest for around 90 mins for it to be taken up around the body , then have the scan itself.

We have a follow up appointment booked with the surgeon to discuss the results the following Wednesday and the oncologist on Friday 14th, so by the end of next week we will know the extent of the bad news.

We know the little darling is back, now we need to know just how quickly it is growing . The last scan was done on the 27th July and showed no conclusive evidence of any meso, so this one will show us the spikes in glucose uptake where it has developed.

From the areas of pain,it appears most likely to be in the chest wall and diaphragm. Today as well as pain in his back, his chest wall was also tight on the right hand side. At the moment neurofen in the morning and evening is just about controlling it , we have also been prescribed some much harder hitting painkillers.( dihydrocodeine)

What’s really scary is four weeks ago, we were having a great weekend in Goodwood, no pain at all. Then an ache around 2 weeks ago, now we are talking about serious painkillers just to get through the day. I really don’t want to think about just how quickly this is growing or how to deal with the pain.

As so few of his family know about the situation, it is coming very close to having to sit down and tell everyone , including his teenage son, just what is going on and how much time is possibly left.

 

Changing scan dates

Slight set back today, having read about the mesothelioma patients day on October 1st, found out the mesothelioma scientific day for the medical profession is also at St Pancras, the day before on the 30th, with Dr Steele in attendance , so no way we’ll be seeing him on the Friday at our appointment.

Checked with the oncology nurse who agreed we would be seeing one of the other doctors, who would assess the morning scan. Our experience of other doctors has been a bit variable. One we didn’t get on with at all well, another tends to list out every possible option or opinion, which leaves us confused and/or depressed.

Decided we would be better off delaying everything a week, then realised we had already booked a weekend away for the first week in October, which we were really keen not to cancel as been looking forward to for ages. After much thought have put back scan and appointment by two weeks to mid October.

He is working on theory that if all the pain is being caused by the tumour regrowing , then we might as well enjoy the weekend , whist we still have uncertainty , and therefore hope. He is now taking paracetemol regularly , the pain seems to be in his back around the area of the right kidney at the base of the right lung.

Pyschologically , trying to get our heads round not knowing for another month, at times I struggle to stay positive and keep myself together, so no idea how he is managing.

mesothelioma – a potential legacy of 9/11?

September 26th is once again the day selected by the United States Congress to raise public awareness of the cause and effects of mesothelioma, Nearly 3,000 Americans are diagnosed with mesothelioma each year.

Despite regulations imposed by the Environmental Protection Agency, and the increasing number of lives claimed by mesothelioma, lung cancer, and other asbestos-related illness, an estimated 1.3 million construction and general industry worker are still regularly exposed to asbestos. Traditionally, industry workers such as shipyard and factory workers, plumbers, machinists, mechanics and electricians are those most commonly exposed to asbestos, and military and navy veterans also commonly suffer from asbestos cancer because of the toxic mineral’s presence in munitions and ships.

However, the discovery of new contaminants and the many tragic natural disasters that have torn through asbestos tainted buildings have put all Americans at risk.

The collapse of the New York City’s Twin Towers on 9/11 exposed thousands of first responders to asbestos and other fatal contaminants, as did Hurricane Katrina’s destruction of New Orleans. In addition, the mineral erionite, which is found in road gravel in several US states, has now been determined to also cause malignant mesothelioma.

Patients currently only survive about one year after diagnosis, but many studies and clinical trials are testing new and improved treatments that will hopefully help increase mesothelioma life expectancy.

Mesothelioma treatment developments in the US

Always interesting to see what else is being developed worldwide, the US has led a lot of the treatments and just published a recent update regarding heated chemotherapy during surgery. This multi-pronged treatment is meant to reach cancer cells that surgeons can’t easily remove. This form of treatment is particularly useful when treating peritoneal mesothelioma, a rare cancer that affects the lining of the abdomen, as the chemotherapy drugs are heated and used to bathe the abdominal cavity.

 

In an article published in the New York Times on August 12, 2011, heated chemotherapy was described as the most aggressive form of cancer treatment possible. In the article, Dr. Paul Sugarbaker, a leading proponent of hyperthermic chemotherapy, as the therapy is also known, said that it is common knowledge among doctors that cancer cells cannot withstand as much heat as healthy cells. Applying the chemotherapy directly over the tumors should be more effective than administering the medication through the bloodstream.

However, the treatment also has critics who question the therapy’s benefits, despite the fact that an increasing number of American hospitals are offering it as treatment for mesothelioma and a variety of other cancers.

Critics believe that studies of hyperthermic chemotherapy were slanted towards patients with less severe cases of mesothelioma and, therefore, garnered far better results than if they had been conducted with your average mesothelioma patients.

Haven’t heard from anyone if this is offered in the UK .

 

Good news at Bart’s

After the longest morning of my life ( even worse than waiting for my A Level results), we got the results of the PET-CT scan. Overall it was good news, there is no indication the meso is growing , there is some trace on the PET , but they think it is linked to inflammation from the surgery , which can apparently show up for years.

No sign of it anywhere else in the body either, the only negs were, there is still a very small pleural effusion , which has remained since the surgery , no nasties in it apparently and doesn’t impact on his breathing. The unexplained bit is still the pain across the top of his stomach and down his right side, the oncologist didn’t have any explanation for this, so we will be checking this bit out with the surgeon  next Wednesday.

We have a new CT scan booked for two months time at the end of September, so hopefully am going to get used to waiting for these tests.

Strangely felt very unreal, think we were both so psyched up for bad news, we didn’t believe the scan interpretation , have driven home with us both in a slight state of shock. Hopefully come Wednesday , if the surgeon says the same and can explain the cause of the pain , we can both relax a little and enjoy the summer. Big emphasis on him continuing to exercise as much as possible, so I can see the bicycles out again this weekend.

 

 

New staging discussions and a $2.5 million mesothelioma compensation payment

News this week about possible new staging for meso, the Aurora, Colorado-based International Association for the Study of Lung Cancer (IASLC), in collaboration with the International Mesothelioma Interest Group (IMIG), has begun a project to study and improve the current staging system of pleural mesothelioma.

The current pleural mesothelioma staging system was developed by IMIG in 1995 and is based on the relationship between tumor size, lymph node and metastasis (TNM). However, experts believe that improvements in mesothelioma diagnosis and treatment call for revisions to be made to the staging system. Additionally, the IASLC believes that some of the tumor descriptors are currently difficult to apply to non-surgically managed patients. Additionally, the organization says that the lymph node aspect of the staging is nearly identical to non-small cell lung cancer, despite the fact that there are big differences between the two cancers.

The Prospective Staging Project in Malignant Pleural Mesothelioma was formed at a joint meeting of the IASLC-ISC Mesothelioma Domain and Advisory Committee in September 2010 in Kyoto, Japan. In order to modify the system, detailed collection and analysis of mesothelioma patient data is necessary, and researchers will have “to identify and validate additional descriptors for possible inclusion in future revisions to the TNM classification.”

At the moment, it seems to be easy to be written off when you have a meso diagnosis, particularly if it is beyond stage 3. Not sure what these possible changes may mean, but anything that stops this instant write off by most of the medical profession has to help.

Another claim settled this week in America, over yet another asbestos source,James Ginter began working as a laboratory chemist at Durez Plastics, manufacturer of industrial resins and phenolic molding compounds in North Tonawanda, New York, in 1979. During his time there, Ginter worked with a FAST (Friction Assessment Screening Test) Machine manufactured by the Ford Motor Company, the use of which required that he file and grind experimental asbestos-containing friction products used as vehicle brakes.

By grinding asbestos-containing materials, Ginter was exposed to a dust containing carcinogenic asbestos fibers during testing. Although Ford was entirely aware of the harmful effects of asbestos at the time and even knew that employees were suffering from asbestos cancer, Ford continued manufacturing the machine without providing any warnings.

Ginter was diagnosed with malignant mesothelioma in March 2010. He later filed a lawsuit against Ford for causing the cancer that will ultimately claim his life. The Buffalo jury delivered a verdict in favor of Ginter in the amount of $2.5 million dollars, assigning 15% of the responsibility for damages to Ford. The remaining percentage of responsibility for damages was assigned to other entities, including defendants, who settled before going to trial.