Mesothelioma

A place for people affected by mesothelioma to support one another, ask questions, and share their experiences.

Pleura Mesothelioma - Two years and counting

PappaChappa
Posted by

Hi all,

Not sure why its taken me so long to realize this Macmillan resource was here and could have saved me so much time on research early on in my diagnosis. Any how, I'm here now, so a little about me. I do hope that my post gives some hope to others going through the same as either sufferers or family members.

I was diagnosed with left side pleura mesothelioma in late Dec 2016 following a bought of 'pleurisy' at the age of 54 (my second bought in 12 months). My pleural effusion was drained (1ltr) and biopsies taken to confirm diagnosis and easy my breathing. At the time I was told by my surgeon that I had 'weeks', possibly 'months' to live. As you would expect, my family and I were floored by this news, especially given my level of fitness beforehand (cycling 6,000 miles (ca. 9,656 km) per year).

A meeting with my oncologist just before Christmas of 2016 saw my diagnosis being revised to the typical 'an average of 12months' but could be less or more! Well I'm now nearly 26 months post diagnosis and still relatively fit and healthy.

I started with the typical x2 doses of chemo in Jan 2017 (pemetrexed and cisplatin) and was scheduled to have 4 cycles, but due to the side effects only managed 3. I joined a clinical trail at the Freemans Hospital Newcastle in Jul/Aug 2017 using a none mesothelioma specific Chemo (gemcitabine) and immunotherapy (SRA737), which I tolerated well for 6 months before having to leave the trial after my cancer exceeded the 20% rule.

Since then, apart from some targeted radiotherapy on affected lymph nodes in late2018, I've had no more traditional NHS treatments.

During all the above treatments, and in the absence of other NHS options, I began to look at natural products to see if they could help  and turned to cannabis CBD oils.

[edited by admin] What I can say, is that it has and does help a great deal to manage my pain and general well-being, particularly sleep. I've also found Copaiba oil as a good source of local tissue/muscle pains.

As my condition slowly takes a greater hold on my health I'm now looking at other cancer specific trails, especially those based on immunotherapy. I'm hoping to look to join one in the next few weeks, but it's a double-blind study (CONFIRM) has anyone been on it or on it? I'd love some feed back if you're willing.

So for now, I'll keep using my CBD/Copaiba Oils and staying positive for as long as I can. If my experiences can help others in any way, please just ask.

Stay positive,

Regards, Pappa

Matty moo
Posted by

Hi pappa im so pleased you are doing well.My husband was diagnosed with pleual mesothelioma in june 2017.He was 58 then.Huge shock as was veey fit and did loads of running.Six chemo sessions shrunk it well .Hes still fit and able to live life pretty normal .Gets tired but he can manage.Last ctt scan revealed growth in a lymph node so may start chemo again.We remain positive 

TomJack
Posted by

Hi Pappa,

I've just read your post. Not sure if you'll qualify for this trial, but ask your Oncologist to refer you on the MiST trial. It's just opened at Liecester and will be available in Manchester later this year (not sure when). It sounds as though it's one of the best trials to get onto. They do Gene testing on your Mesothelioma and give you targeted treatment, including possibly Keytruda (Immunotherapy + a novel agent. It is NOT a randomised trial, so everyone who is accepted will get treatment specific to their Mesothelioma.

I was diagnosed with Pleural Mesothelioma last November and have just enrolled onto the Mars 2 trial where I'm hoping to be randomised for surgery after 2 cycles of chemo. It's a bloody big op, but feel I have to try everything I can. I've been told that once my Mesothelioma comes back I can enrol onto the MiST trial.

I recently joined the Mesowarriors UK group on facebook run by Mavis Nye (longest survivor in UK - just over 10 years) and you get lots of info about trials and treatments (more than you will probably get from your Oncologist).

By the way I'm from Newcastle and under Dr. Gardiner at the Freeman. I too have been taking Cannabis oil (the sort which has THC in it which people reckon is the sort you need to stand a chance of it helping with Cancer) I'm having a CT scan on Tuesday before starting my 1st cycle of chemo (as part of the Mars 2 trial) and hoping for a miracle that my cancer has shrunk.

Good to hear you are still going strong. I've been given 12 months without chemo and maybe another 3-6 months with chemo. Like you my partner Jackie and me were devastated when we got the diagnosis, especially as the chest consultant at the RVI thought I only had a 1% chance of having Mesothelioma.

Feel free to message me if you want any more info etc, or even just a chat.

Best of luck for the future, Tom

PappaChappa
Posted by

Hi Tom,

Thanks for your reply.

Yes I'm aware of the MiST Trial and I'm due to meet the Bobby Robson Team later this month to explore further options now that any further treatment for me is classed as 3rd line treatment. I'm also looking at the CONFIRM trial at South Tyneside, which is a similar immunotherapy treatment but is a double blind trial . I've not seen the Mesowarrior group but will look it up thanks.

Don't pay too much attention to the medical prognosis on the cancer, they are very subjective and based on average survival rates. A positive frame of mind and keeping active every day is as good as any treatment on offer. However, the 'you know what oil' I think is helping too. I'll send you a message.

Regards,

Pappa,

TomJack
Posted by

Hi Pappa,

I haven't heard of the Bobby Robson Team - is this something anyone can contact or do you have to be referred to them.

Yes I'm trying not to dwell too much on timescales regarding prognosis etc. Since being diagnosed last November I've researched and googled everything I can to find out about any new treatments/trials, people helping themselves with "the oil" etc. The guy I get my oil from only had 3 months to live just over 2 years ago, with an un-operaple lung cancer. Basically he was told to go home and prepare to die. He changed his diet on advice from a herbal life guy, to make his body more Alkaline (apparently cancer cells can't survive in an Alkaline environment) and started taking "the oil". Just over 2 years on and he's cancer free. So there is hope out there when conventional treatments fail. 

My 1st chemo went ok yesterday, and I feel ok today, though I know the next 10 days or so will tell me how good or bad my body will react to it. I agree the double placebo trials and randomised trials are hard on the patient. All we want is a treatment that is going to make us better, but most of the time that's the only way the doctors can know what will work best in the future.

My Mars 2 trial is randomised - we all get 2 cycles of chemo, then a CT scan to make sure the cancer is still operable, then our names are put into a computer program and 50% get the operation with another 4 cycles of chemo, and the other 50% who don't get the op carry on with the 4 cycles of chemo.

Although it's a bloody big op I feel as if I have to try everything possible to give me as long as possible.

I hope you get enough info when you meet the Bobby Robson team next month for you to make a good decision for your next treatment. All the best for the future, and hopefully you can find me on facebook.

Tom

PappaChappa
Posted by

Hi Tom,

The Sir Bobby Robson Cancer Trial Clinic is based in the Freemans Hospital. You Normally only get a referral there once you have done at least one round of conventional treatment, so have a word with your oncologist to see if they can start the ball rolling. Here's a link to the team. They're a great team who managed my trial last year.

http://www.newcastle-hospitals.org.uk/services/cancer_services_sir-bobby-robson-cancer-trials-research-centre.aspx

Yes I've seen a bit about the Alkaline diets in conjunction with other treatments. 

Hope all goes well with your chemo, how many cycles are you having? The Mars 2 sounds like a big process, wishing you all the best with both.

Regards,

John

TomJack
Posted by

Hi John, I have 2 rounds, then CT scan, then randomised to either surgery + 4 more rounds of chemo or randomised to carrying on with 4 more rounds of chemo. The surgeon I saw down in Sheffield says the op doesn't come any bigger - they remove the pleural linings, the pericardium (lining of the heart) and the lining of the diaphram and replace both linings with a goretex type of patch. Some people are still alive after 5 yrs, some have gone in 6 months - there's just no way of telling. It's quite scary to be honest making the decision.

Thanks for the info re: Bobby Robson Trial Clinic, will have a look and keep it in mind. Do they have knowledge of all the available trials for Mesothelioma ?

regards,

Tom

PappaChappa
Posted by

Hi Tom,

I can only wish you good luck in your treatment options, I hope it all goes well. I would advocate though that you're 100% sure this is the way you want to go as it's a big procedure to embark upon.

Re the Bobby Robson, yes they are aware of all trials for Meso and a lot of others too. The trial I was on for 6 months was a chemo and immunotherapy (SRA737) and was being tested against multiple cancer types across some 100 people. I only had to come off because of the 20% rule, i.e. my cancer had grown 19% in the trial time. Which was disappointing as it's not a good way of measuring growth, but thats another story.