Living With Mesothelioma -My Diary- The death of 2 Mesowarriors that were very close to me has really knocked us for six.

I woke up today to the news that our darling Tess passed away on Thursday and bless Alan her husband could only reach me via her blog on Facebook. We never needed phone numbers as we were in touch by Facebook and messages and poor Alan hasnt used that social media.

Anyway I found out by reading the blog and was able to get in touch straight away. we had a long conversation but he was cooking a dinner for his son and the family so we will keep in touch and I will go to the funeral of my dear friend.

We have met several times as we live so near each other and have the same Oncologist.we have compared treatment through the years and Tess was on the same trial as myself and we attended Maidstone. Tess seemed to go downhill fast and her Mesothelioma started spreading.

I had visited her recently and we had a lovely afternoon together so I will cherish that day when she gave Ray a message to look after me as i was a lovely lady well i now ask the Angels to look after Tess as she was a wonderful lady and i loved her so much xx

Goodnight my sweet friend you have been so brave through all this and Im proud to call you a true friend. RIP the pain is over .

 

Then tonight I have the news that My friends Anne and Peter have lost Paula. I hate this so many dying of a man made disease.

Photo: Goodnight Paula (Stanley ) Our Brave MesoWarrior who has just gone to sleep today I will be thinking of your Lovely Mother and Father (our dear friends) and the family that mourn you <3
 I tried to help Paula when she was first diagnosed. I passed on all the info I had on Macmillan and treatment and trials but it was all to late because even though not 50 she was seriously ill and she had no energy from the start.
Goodnight Paula (Stanley ) Our Brave MesoWarrior who has just gone to sleep today I will be thinking of your Lovely Mother and Father (our dear friends) and the family that mourn you.
What a sad day I cant believe it.
After taking Louis for his walk we through ourselves into gardening. Cutting back summer plants I have taken my grief and anger out of them and they are cut very short.
I must go on fighting in the name of these Mesowarriors and I hope Im helping to find that cure we all crave.
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Living With Mesothelioma -My Diary- The Ramblers took up our space we walk Louis in. Memories of Amsterdam.

Rays Blog http://mesoandme.wordpress.com/2014/08/30/saturday-93/ Im putting it here as people are missing the blog of a carer xxx

My Saturday

Louis was ill all night and was running out to the garden all the time. Poor thing but poor us we needed our sleep. Ray ended up sleeping on the settee with him.

It was raining heavy and as dawn surfaced it was so black skied. Finally the sun came out so I did some washing then we took Louis to the park.

We had to be careful as a rambling class was going on and they were exercising with their walking poles. It looked weird that people need lessons with the pole.i just walk with mine but they really use them to help

Yes just like this .

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We got back home for me to put the dinner on slow cook and then I fell asleep. Rays blog explains what he did while I was in the land of nod. Yes cutting roots of a tree and with his bad back.  Naughty Naughty if he had put his back out I would have been cross as I have asked a gardener to do it but she hasn’t turned up. Now ray has done the tree the rest is easy and we could do the job.

My Brother and Girlfriend turned up and we spent a nice afternoon nattering away about what is happening to us. He bought me a Magic scarf with many ways to use it -well 15 ways actually so that will keep me amused, A lovely rose bush (miniature) and a travel bowl for the dog. Louis loved it and was smelling all the new smells. That is going in the car and will be great for all his drinks after his walks.

The time soon went and they were off but Louis didn’t want them to go. He is to vocal by half little devil.

So we all walked down to the car to wave our company off and then returned home to spend the rest of the afternoon sorting things out. I did check all my write up of the Trial and I should be having a scan every 8 weeks so the hospital have got my Picc Line fitting mixed up with a scan. I will have to sort this monday.

Dinner all cooked and eaten washing  up done,we are watching X Factor thats all the Autumn programs starting again. I really must get a proper hobby. Sonja is crocheting and Lesley is knitting so I should start as I will be left out of my Motorhome friends chatting.

IATP director had visited Holland this week and then this picture appeared on Facebook.It all bought back wonderful Memories for Ray and I of the time we spent in Amsterdam. We arrive at 6 in the morning as the coach pulled up in the square and a English bar owner opened up as he could see we were so tired. It was a great time of boating up the canals and visiting Ann Franks room in the top of the house and imagine her writing her diary. We visited the flower markets and the red light area at night where the ladies of the night sat in windows to sell their bodies.

It was a very romantic scene and a wonderful memory for Ray and I. We never realised on the ground how it was built although we did see all the dykes so knew there were many canals.

Ray also was reminded of when he traveled from Dusseldorf to the Hook of Holland, when in the Army. Three times a week he drove the 3 ton army truck to deliver and collect the mail from the ships and he sorted all the mail out for delivery to all the troops in BAOR (British Army Of The Rhine.

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http://en.wikipedia.org/wiki/Amsterdam

 

Living With Mesothelioma -MY Diary- Another Scan Appointment ??? M25 Usual Friday Night Blockage

Yesterday was a very quiet day with no problems even Ray couldnt find anything to blog.

My younger brother phoned to see if he could visit Saturday so yes of coarse. Louis had a walk in the park and there was so many sheep at the gate to the field we couldnt push through so we had a play in what I call the garden area. An area they have fenced off.

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Amazing how many groups there were so we didnt want to disturb them

Today has been busy on the computer as I have had so many emails and messages to sort out info for Mesowarriors which I love doing. We share so much Information and it has become a support group for all of us.

We are always hunting for the latest trials as we need hope.

I cant believe the phone went and The Royal Marsden phoned to give me my appointment for another scan. She said it was for the trial every 4 weeks a scan.

I said I was waiting for a PICC Line to be fitted and they use a scan but she said thats not what she is booking so she will get in touch with the PICC Line Dept and check. That really puzzled me so we took Louis out for a walk and it bugged me all the time. I came straight back and phoned my Drug Development Unit and the nurse on duty said there was nothing on the system yet so phone Monday.

So at the moment I have an appointment for next Friday for another scan.

Scanxiety so many times -every 4 weeks will really make me scatty ha ha !!

The weather has been so showery made up of heavy rain and sunny periods. It is very windy though and I realise I will still be breathless when walking through the Autumn.

I have a friend caught in the M25 friday tail back, you know how I hate the M25

M25 Kent – Queuing traffic and three lanes closed on M25 anticlockwise at A282, Dartford River Crossing toll booths, because of an accident involving a lorry and a car and a fuel spillage. Congestion to J4, A21 (Orpington).

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linical trials are vital for improving cancer treatments and making them available to patients. We support more than 250 clinical trials across the UK, and our groundbreaking research has saved the lives of many thousands of people in the UK and all over the world.

Are you looking for a clinical trial because you or someone you know has cancer? Find all clinical trials recruiting in the UK on our clinical trials database.http://www.cancerresearchuk.org/our-research/our-research-by-cancer-subject/our-research-on-clinical-trials

What we’re doing now
We’re working on more effective, kinder drugs, and developing new therapies for rarer and hard-to-treat cancers, such as brain tumours.

We support more than 100 drug discovery projects across the UK. For example, at the Cancer Research UK Centre for Cancer Therapeutics at The Institute of Cancer Research, Professor Paul Workman and his colleagues are studying faulty molecules in cancer cells and developing new drugs to target them.

And Dr Martin Drysdale in Glasgow and Dr Donald Oglivie in Manchester lead two of our pioneering Drug Discovery programmes, searching for molecules that could become the breakthrough treatments of the future.http://www.cancerresearchuk.org/our-research/our-research-by-cancer-subject/our-research-on-cancer-drugs

But the best news today was this

Thousands more cancer patients will be given greater access to innovative drugs not routinely available on the NHS, following a £160m boost to the Cancer Drugs Fund (CDF) over the next two years.
With an annual budget of £200m, now rising by 40% to £280m, the CDF has delivered important benefits for more than 55,000 patients since it began in 2010.
Alongside the multi-million pound injection of funds to help patients, cancer experts at NHS England have pinpointed two new cutting-edge drugs which will be added to the fund. These are:
Xtandi (enzalutamide) for prostate cancer.
Revlimid (lenalidomide) for a new group of patients with myelodysplastic syndrome, a rare blood condition.
Health secretary Jeremy Hunt said: “It’s vitally important that as many people as possible have access to these pioneering, life-enhancing drugs, and we need to continue to focus our efforts on increasing access to these innovative treatments, whilst ensuring that all patients continue to receive the effective drugs which are right for them.”http://www.nationalhealthexecutive.com/Health-Care-News/rare-cancer-drug-availability-boosted-in-nhs

 

Living With Mesothelioma -My Diary- Target was reached today My Birthday so now a new Target 27/8/2015 is set !!!!

Photo: Have a great day! :)

I think it is my Birthday I have had so many lovely messages on facebook I cant thank everyone. Love Facebook and all my cyber friends. 73 today I didnt expect to see it. Thanks to the Royal Marsden I have all thnks to them I can maybe have another year maybe 2 lets make my 80th birthday as my goal. As that would mean Mesowarriors would all be on my drug and living.

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A wonderful bouquet of flowers  came from my friends Chris and Sylvia and a lovely notebook from Mr and Mrs W all my IATP friends. hey work so hard to improve the modern day Asbestos training. People should be hurt by it anymore but it is here with us and always will be. Its so frustrating for all of us.

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We did go out as it was so hot today and the sun was beaming away. So I bought new curtains for the bedroom the first time I have bought the eyelet ones. The design is like the wall art we put up in the Lounge. I have a mania for more delicate designs.

My next purchase is new clothes for myself to wear in Leicester in October.

Im very pleased with my legs as the Compression pop socks are working very well and I have very small ankles again. The legs feel so comfortable as well so thats another problem sorted. I have bought a large E45 as advised by the hospital. It amazes me that a over the counter cream is so good for all skin problems.

In 1952 we released our first product—E45 cream. It was created by a Boots chemist in response to a customer request for a product that would soothe the skin in addition to having protective qualities.

In 1963 physicians noticed E45 cream was a beneficial treatment for dry skin conditions. At this time we only promoted our products to hospital sales departments. It wasn’t until 1980 that E45 cream was introduced to the pharmacy and retail establishments, where it was recognised for its dry skin expertise.

In the 1990’s we extended our product range to include a complete emollient therapy line.  The feedback was so positive that we continued to create products with our customers in mind. We strive to continue to serve our customers needs and produce the very best for all skincare regime needs.

 

A friend has found me a great site in the US where patients are discussing side effects of my trial MK3475. The Pain in the throat is mentioned and itchy skin, dry throat. All have good results but one lady has regrowth after a year. So its not all good news. I will be happy with a year though I will be happy with what ever result but a totally shrinkage is my hope.

2 cases from the forum ——

My wife was on the MK3475 clinical trial from September 2013 to April 2014. For her, the side effects were mild at first, but became progressively more severe: headaches (more or less non-stop, ranging from mild to severe), peripheral neuropathy in her hands (progressing from numbness and tingling to severe pain), fatigue, and loss of appetite. During the past month, tumor progression returned, and so she is now off the trial, but even if the tumor progression had not returned, she would have asked to be taken off of MK3475 because of the side effects. She is being treated at Dana-Farber (where she is getting excellent care), and there are several other patients getting MK3475 there. We were told that, among those patients, my wife’s side effects are among the worst that they have seen.

I have been in a MK3475 trial since June 2013. The side effects have been fairly minor given the significant reduction in tumor size, +80%, that has taken place. Initially I was fatigued after the infusions but that went away after a couple of months. Occasionally I will get chilled after an infusion but this may well be simply the result of the temperature of the liquid. As mentioned above I have a dry mouth on a fairly regular basis. I have also seen an increase in my bowel movements. Until recently I had not experienced any shortness of breath but a weekend trip to outside of Denver changed that, but then going from basically sea level to +6200 ft might cause most people to be short of breath. The biggest side effect has been a pretty severe itchiness toward the end of the biweekly infusions but this is easily treated with Benadryl.
When compared to the side effects of the Chemo regime I went through this is a piece of cake.
Good Luck!

We have lost a Warrior today so sad and there are many in trouble tonight. I light a candle for the passing of , Peter Haywood died at 4am this morning in Rowcroft Hospice, Torquay. He first noticed shortness of breath last Christmas, then in April 2014 he was diagnosed with mesothelioma, an aggressive and as yet incurable cancer caused by asbestos exposure. Many thanks to all those who have been there to offer support over the last few months.—-Our love and sympathy goes to the lovely family of this brave man xxxx

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Rays Blog http://mesoandme.wordpress.com/2014/08/27/wednesday-99/

Living With Mesothelioma – My Diary- Another MK3475 Drug Day at The Royal Marsden

After the alarm went off at 4.30am I got up and had a coffee and showered dressed and I was ready so I made the bed and tidied up.

Ray took Louis for his walk and then we set off at 6am.

The traffic was great then it came over the radio of a collision and 2 lanes shut on the M25. OH NO!!! right at Calckets Lane.

As we got onto the M25 we had joined the slow crawl to get past it. A lorry and then I saw the car in the field by the side of the M25. Once we passed the traffic sped up but we had lost 30 mins so it wasnt a disaster. ray dropped me off at the door and I dived in the loo and he parked the car.

I was put into a daybed as there was so many of us after the bank holiday.

The nurse was with me and she took all my bloods from very tiny veins that wanted to hide.

I have agreed to a PICC line that will be fitted by my next appointment in 2 weeks.

The Doctor came then to see the 4 of us that were in the ward.

I asked him what to do with my legs as I had turned in the bed and rubbed some skin this then was weeping. The other leg I had rubbed in my sons car and that was weeping as well.

He was worried by the redness and has given me a coarse of antibiotics but had the Edema Department come along to look at it in the afternoon.

Acute pulmonary edema is usually to do with the heart but Cisplatin has caused mine.

The Doctor was well pleased with me for going camping at Malvern and walking around. I do feel so well and I know Im doing so well. I can feel it.

We sat around waiting for my bloods to be tested and the drug approved. That message came through so we had to wait through for the drug to be made.

Ray went and had a dinner in the Restaurant but as I was in a bed I had a free one. jacket potato and cheese with a trifle for sweet.

The Consultant from the Edma Dept came in and looked at my legs and agreed they need strapping up to support and make the muscles work to clear the fluid.

I have a sheet of leg exercises and a box of gauze squares but she went and got me a pair of support pop socks that she helped me put on. They are so comfortable I had instant relief of the pain and soreness.

I was the measured for another pair that will be with me next appointment. So with the Antibiotics and water tablets and the support socks the problem should get better.

We sat and did crosswords and I was trying hard not to drop off.

The poor lady in the bed opposite was having Icecaps fitted on her head as she had her Chemo. This is so her hair doesnt fall out but it isnt proved this works

http://www.macmillan.org.uk/Cancerinformation/Livingwithandaftercancer/Symptomssideeffects/Hairloss/Scalpcooling.aspx

When blood vessels in the scalp are cooled, they become narrower, and so less blood flows through them. Cooling the scalp during chemotherapy means that less of the chemotherapy drug reaches the hair follicles. This means the hair is less likely to fall out.

There are two widely available methods of scalp cooling. One method uses a hat known as a ‘cold cap’, which is filled with a gel that can be chilled. The hat must be fitted snugly around the head to work properly. The other method uses a small, refrigerated cooling system to pump a liquid coolant through a cap that is attached to the cooling system.

She was so tired bless her.

The lady in the other bed was having a Phase 1 drug for Pancreatic Cancer. Its working well for her and she said it is for other cancers as well. Seems to me there are a lot of cancer sufferers receiving drugs and getting good results Im so proud of the Royal Marsden and thrilled I found it and bucked up the courage to go for it.

A nurse from the day ward came in and said the news is great isnt it. I said “you have heard about me then ” “Oh yes we have heard and its brill news”.

The nurse then gave me a birthday card signed by all of them. That is a wonderful touch I really must take some chocolates into them next time xx

I finally, at 3pm had my drug come up and it was set up and flowed in for 30 mins. http://clinicaltrials.gov/ct2/show/NCT02054806?cond=cancer&locn=canada&lup_s=08/31/2013&lup_d=360

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I soon had everything taken out and cannula out. I wanted an appointment changed in October as we will be home from the Leicester Conference on the Sunday but it will be to late to get the dog home from the kennela so I can now pick him up on the Monday go to Marsden on the Tuesday.

They are so kind and nothing is to much trouble.

I was then Discharged and we came home. The M25 was in trouble again but we were lucky and got home Ok as they had cleared the accident on the M20 but it was raining hard -what a day and what a bank holiday it was. The coldest one on record.

http://mesoandme.wordpress.com/2014/08/26/tuesday-108/ Rays Blog –he is tired out bless him xx

 

Living With Mesothelioma -My Diary- a great August Bank Holiday

We have had a lovely Bank Holiday weekend with our son and DIl

They arrived Saturday with another birthday present.

I have already had a Mulberry handbag from them

Small Willow Tote

 

So I cooked them a lovely chicken dinner and we slowly drank wine all evening.All very pleasant and such a laugh.

I asked if they would help me put my wall art up to decorate the lounge wall. I thought they would laugh but we enjoyed it as our DIL had fun doing it for me and it looked good. Making sure we didnt put to much up as less is more.

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Well its different xx

We opened up the bed settee and made the bed up but the left the plastic bag on the mattress.I told them they would slip but no they didnt listen.  Of coarse I was right and they didnt sleep so well.

We had breakfast and then after lots and lots of coffee we went to the Range to have a good look around. We didnt buy much but there are some curtains for the bedroom I liked so I will measure up and go back and buy them.

On our return they both fell asleep while I cooked another meal and then they were soon off home as they had to travel on the M25 but infact there neednt have been a worry as they had a good journey home. They had some tree cuttings they wanted to burn so they had time to catch up on that job.

I did have a long sorting out of Tesco bank as someone in New York was spending my money on computer games. Cheeky devils!!! It was all sorted out and they are sending me new cards and I have changed all my account settings and passwords. Just an inconvenience.

Today it was pouring with rain (Bank Holiday rain ) we went to a local garden centre to purchase ground cover and root killers for a garden company –Garden Squirrels (Love the name) They are going to clear a small part of my garden for me and put the covering down  and we will regravel.

So tomorrow Im off to the Marsden again for the drug day. Up early then.

http://mesoandme.wordpress.com/ Rays Blog xx

 

So another part will be all tidy again.

 

Living With Mesothelioma -My Diary- We say goodnight to another Mesowarrior

A lazy day yesterday just catching up with all the computer work and housework.

We went to Tesco where I bought all new bedding for the bed settee ready for our son and DIl to visit. Ray took Louis for a walk.

Louis was in a real funny mood last night I think he knows I have booked him into kennels in Oct ??

Even when i went to bed I had to get up as my legs were so sore. The bilateral leg oedema is very sore now. I turn over in bed and the skin gets rubbed so i will have to wrap it up at night with loads of cream on it. i will chat to the Doc on Tuesday about it.

Just as I get it all nicely back to normal I damage it again.

I also had to take more painkillers as the side porthole is sore and that’s where the most pain is. It just niggles away and when i lay on the left side it causes it to be uncomfortable.

I had a message from a husband of a warrior that we she had died. So sad but it amazed me that even in grief he could think of telling me. We have such a bond together in the Mesowarrior community.

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Sandra, who’s battled with Meso since diagnosis November 2012 passed away very peacefully at St Wilfrids Hospice on Friday 15th August. She is already so missed by jack, 23, Zoe 20 yrs old and family.

RIP Sandra

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Two very interesting articles

http://www.pmlive.com/pharma_thought_leadership/interview_astrazenecas_susan_galbraith_574388

Immuno-oncology
One area of interest for many pharma companies is the potential for immunotherapies – drugs that encourage the body’s immune system to tackle a disease. The likes of Bristol-Myers Squibb and Merck Serono have made recent investments in the area, while AZ’s interests include MEDI4736, an anti-PD-L1 monoclonal antibody (mAb) in phase 2 trials for NSCLC, and tremelimumab, an anti-CTLA4 MAb in phase 2 for the rare cancer mesothelioma.
“These drugs are going to have activity in many different cancer types but there are many questions we still need to address,” said Galbraith, acknowledging struggles for some pharma companies working in the field. “There is much to be done in that space to understand better the optimal way to combine these drugs to their best effect. But I think it’s clear already that this a very important area of biology.”
And again, matching drugs that work well together will be crucial going forward: “Combination treatment will be a critical component; how best to put these drugs together with other checkpoint inhibitors, or with other agents that might affect a different part of the immune system, or with small molecules.”

and

The one to interest us mesowarriors as this is my drug being combined so like chemos we have now got the progress of 2 together. A doctor at one of the conferences told us this was the way to go and now its happening at last.

http://www.pmlive.com/pharma_news/bms_and_celgene_to_research_cancer_immunotherapy_combo_593893

The partnership will see the two companies study a combination of BMS’ anti-PD1 drug Opdivo (nivolumab) and Celenge’s cancer drug Abraxane (paclitaxel).

The combination will be investigated in a phase I study across multiple tumour types, including HER-2 negative metastatic breast cancer, pancreatic cancer and non-small cell lung cancer.

“Through this collaboration, Bristol-Myers Squibb and Celgene will work together to advance the science and understanding of how the body’s own immune system and chemotherapy might work together to fight cancer,” said Michael Giordano, senior VP, oncology development, BMS.

Many companies are turning to cancer immunotherapies as the next advance in oncology treatment, with much of the focus on anti-PD1 therapies. Companies that have promising candidates in this class include Merck & Co with the highly promising pembrolizumab, Merck Serono with MSB0010718C and AstraZeneca with MEDI4736.

BMS remains to only company to have an anti-PD1 therapy approved in any country in the world, however, following the decision by regulators in Japan to recommend Opdivo as a treatment for patients with melanoma that is not treatable with surgery.

Opdivo’s rivals are not far behind – Merck & Co’s pembrolizumab is under review in Europe – and the potential for a combination treatment with Abraxane could give BMS a vital edge in the anti-PD1 race.

Positive study results would also benefit Celgene, which currently markets Abraxane as a treatment for pancreatic cancer and metastatic breast cancer.

The phase I trial is expected to begin in the fourth quarter of 2014 and will be conducted by Celgene. Different combinations will be tested in different indications: patients with HER-2 negative breast cancer receive Abraxane and Opdivo; patients with NSCLC will receive Abraxane, carboplatin and Opdivo; and patients with pancreatic adenocarcinoma will be treated with Abraxane, gemcitabine and Opdivo.

Markus Renschler, global head of haematology and oncology medical affairs, Celgene, said: “We believe that Abraxane is appropriate as a combination partner for novel immuno-oncology therapies due to its proven anti-tumour activity and that it can be administered without steroid premedication.”

Additional details of the collaboration were not disclosed.