USA - Clinical Trials of TRC105 Drug

It amazes me how much hard work and dedication goes into the search for new cancer drugs, and many of these drug researchers rely so much on charitable donations.

I have found an article released two days ago about the research into a drug called TRC105 which is in development by a company called TRACON (San Diego, California) in collaboration with the National Cancer Institute in the USA.

"TRACON Pharmaceuticals (NASDAQ:TCON), a clinical stage biopharmaceutical company focused on the development and commercialization of novel targeted therapeutics for cancer, wet age-related macular degeneration and fibrotic diseases, announced today that the U.S Food and Drug Administration (FDA) has granted TRC105 orphan drug designation for the treatment of patients with soft tissue sarcoma."

I don't claim to be a science guru who entirely understands everything mentioned on the web page, but surely this is good news for future soft tissue Sarcoma patients? It seems to be in trial stages stages at the moment, but to me it seems that the company is quite optimistic. 

“Orphan drug designation for TRC105 underscores the high level of unmet medical need in patients with soft tissue sarcomas and validates our commitment to developing TRC105 in a variety of orphan drug indications,” said Charles Theuer, M.D., Ph.D., President and CEO of TRACON. “We are highly encouraged by the clinical data reported to date from the Phase 1b/2 trial of TRC105 in sarcoma patients, especially in patients with angiosarcoma. We look forward to the availability of complete results from the Phase 2 portion of the sarcoma trial and initiating a pivotal Phase 3 trial in patients with angiosarcoma in 2016.”

The evolution of the human brain is quite mind boggling. The advances we make as a human race are absolutely astonishing. The many people who put a lot of time and effort into working on cures, cures for any types of disease are nothing short of miracle workers.

I truly appreciate how lucky I am to have these people taking care of me.

LINK: pharmiweb.com TRC105 Soft Tissue Sarcoma

Here Is My Leg

I have always put off posting a picture of my leg. Maybe I've always been too embarrassed to show anyone, plus looking at it from this angle rather than looking down makes it look worse. I try not to look at this picture too much, but if it can in anyway help someone realise that these things need to be checked, then I feel like I should be sharing this. As you can see, there is a bulge on the inner of my left thigh which also goes partly behind my knee.

The angle at which I have positioned my legs for this photograph really emphasises the swelling (this is not my usual stance I don't walk round like John Wayne). I say swelling as its not so much a lump, just a bigger leg.

In hindsight I would have had it looked at sooner, but it went from barely noticeable to this fairly quickly. Now you can understand why the jeans get a little uncomfy. 

I have a thigh like Roberto Carols, shame it doesn't give me the power to take free kicks like he does with his left leg :)

Pre Radiotherapy Mould

This morning I had an appointment at the Mould Clinic at Clatterbridge Hospital. As the name suggests, this is where they made a mould of the lower half of my body, a mould which I will become very familiar with over the 5 weeks of radiotherapy treatment. It was very comfy, I wonder if they will let me take it home when they have finished. The idea of the mould is to keep me in the same place each and every time that I have my daily treatment, so the tumour can be hit in the same spot each day.

There were not any obvious signs directing you to the Mould Clinic in the Cancer Centre, so a little old lady on reception took me on a bit of a tour around the centre. She said it was her excuse to have her weekly exercise so who was I to object? She took me to the Simulation unit where I met a member of the hospitals staff called Chris. Chris was somewhat scared to touch me or my clothes as I had a t-shirt on with a Manchester City emblem, and after talking about how crap Everton were at the weekend, he went on to tell me about the plans for the morning. 

He explained that I would be lay on a big bean bag which will be filled with air to form the mould around my legs. I also now have 3 pin prick tattoos on my lower half which will remain with me for the rest of my life, these are used to make sure I am correctly aligned on the machine for each radiotherapy session.

Mould and I were then sent backwards and forwards through the CT scanner several times. I wish they wouldn't make you so comfy on those things, its hard to keep my eyes open with the gentle rocking and the background whirring of the machine. Still, not as comfy as the MRI scan where they put relaxing music through your headphones for a much longer period. That one did send me to sleep briefly.

I couldn't help but notice that everyone who had an appointment was much older than I was. I'd safely say I was the only one in a room of 20-30 people under the age of 60. I'm not implying that many people my age don't get cancer, more the fact that I felt a bit like the odd one out, like people were looking at me and wondering why I was there.

So now, 10 days for them to ensure that everything is in place to administer the correct dosage of rays to the correct area, and 14 days until the visit to Clatterbridge becomes part of my daily routine. 

Here are some friends I met in the waiting room, they weren't too chatty though.

Blog Along

This morning I have got together a few blogs I have found really encouraging and useful over the last couple of months and I would like to share them with you. Firstly to raise a bit more awareness of Sarcoma and how it affects people in different ways, and secondly for people to take some encouragement from other people who are affected by this rare cancer. I have not got permission form these bloggers personally to share their blogs so I really hope they don't mind.

Darren Evans' Blog "Sarcoma and Me"

"Tumour Has It" by Beth

Andy's journey with Chondrosarcoma

My Journey with Lieomyosarcoma by Graham

Emma's Blog about her fight with Sarcoma

Darren's Cancer Journey

All very inspiring reads and excellent narratives detailing the ups and downs which we all experience on our own paths in life, and if you or a loved one has been affected by Sarcoma, they are well worth a read.

I now have an appointment at the Mould Centre, Clatterbridge Hospital for Monday morning to get my leg all moulded up. This will be the first step towards my 25 sessions of Radiotherapy. Its a relief to get moving again, and looking at the timeline set out, I would imagine I will be in for my operation to remove the cancer somewhere between the start and the middle of April. Coincidently, this is the time baby boy number 2 (still no name decided upon) is due for arrival, but Sarah Massey has said that things could be jiggled about to accommodate our situation which is great news. Maternity leave on crutches, should be interesting.

Event timings are weirdly panning out well, as if it had been decided beforehand. Still, things change very quickly and plans can change on a day-to-day basis. Take each day as it comes with a smile.

Waiting (again)

So here we are waiting around again. I was expecting a call from Clatterbridge Hospital yesterday to confirm an appointment for the pre-Radiotherapy treatment but still no contact. Sarah the Sarcoma Nurse has been chasing them up so I hope to hear from them today (I know I wouldn't want the mad Irish lady on my back haha). It's easier waiting for these things when I know I have an appointment booked, but to not know when I will be seen next, is quite frustrating. I have no concerns in relation to the actual cancer, I just want it out.

Everyday brings with it thoughts of the future, how long will I be unable to move properly after the operation? Will I ever be able to move my leg properly? Will it have an impact on my work? There are so many questions that can only be answered on a day by day basis.

2016 is going to be a year packed with emotions and big life changing events. I really don't know how Emma puts up with me, there is so much to think about, the size of the house for one. We are expecting little boy number 2 in April which is such a blessing, I just really hope I am going to be able enough to help out as much as I can. I wish I could explain to little Alfie why Daddy can only sit on the floor for 5 minutes at a time before leg problems kick in, he loves his train sets and cars so much. The little monster also knows the right places to dig his elbows into to make Daddy squirm.

There are so many informative sarcoma blogs out there, every case a different type, a different location on the body, and I am going to post a list of them on my next post. So many brave people sharing their experiences of such a rare cancer. 

Update: Appointment now booked for Monday morning at the Mold Room, Clatterbridge Hospital. 

1000 Page Views

1000 Page Views in 13 Days

Thank you so much for reading my blog journey, I sincerely hope you can take heart from what I write and for those who are, or know someone who is affected by Sarcoma, I truly wish you the all the best.

Preparation for Radiotherapy

Emma and I went to see the Oncologist's Registrar on Friday at the Linda McCartney Centre. She explained the procedure:

The intended benefits: 
To reduce the size of the tumour prior to the operation

Significant, unavoidable or frequent occurring risks:
Early - Tiredness, skin redness, soreness and dryness

Late - Skin scarring, pigmentation, risk of bone fracture, small risk of a second malignancy, risk of delayed wound healing following operation.

All in all, side effects I would happily live with to be rid of this tumour (except the risk of a second malignancy). 

Hopefully one day this week I will be off to Clatterbridge Hospital for a few hours to have some kind of mould or cast made up to ensure my leg is in the exact same position for every treatment session. Apparently this has to be millimetre precise and this is the best way of achieving that. Then 5 weeks of being zapped, for about 10 minutes at a time.

Fortunately with the treatment being carried out on my leg, there is no chance of this causing any sickness which I was not looking forward to. 

We met Sarah the Sarcoma Nurse again on Friday, that woman could brighten up anyone's day, so positive and helpful. My current employer has a Duty of Care to ensure that I will be fit and well to continue working during the Radiotherapy and she is happy to write a letter clarifying this. The staff at the Royal Liverpool University Hospital are a real credit to our NHS and I really appreciate the hard work they do.

CT Scan Results

Last night on my way home from work I got some good news, great news in fact.
Sarah Massey, the Sarcoma Specialist Nurse at Royal Liverpool University Hospital rang me. My heart skips a few beats every time I get a call off a withheld number now.

The results for the CT scan of the Thorax, Abdomen and Pelvis area came back as clear! meaning the cancer has not spread. Straight on the phone to Emma to give her the good news. I now feel like a massive weight has been lifted off my mind. Its quite surreal how following the news of getting cancer, positive news seems to be really magnified.

My attempt to brighten up my office today

Appointment with the Oncologist tomorrow to get things moving with the Radiotherapy.

Good luck to VITFA and her husband with the fundraising later this year. Sadly she lost her father to Sarcoma last July, and will be raising funds in his memory. My heart is with you and I will certainly be following your blog as soon as it is up and running.

Inspiration

Gary Case's story of Myxoid Liposarcoma.

This is also a link to his Facebook page.

What an inspiration this man is. 

Appointment with Oncologist

I now have an appointment booked to see the Oncologist Dr Alam this Friday. I will be meeting her at the Linda McCartney Centre at Liverpool Royal, but the actual treatment will be carried out at Clatterbridge Hospital. Here we will discuss the appointment schedule for the 6 weeks of Radiotherapy, and no doubt I'll be signing a load of consent forms to let them work their miracles. Hopefully we can come to an arrangement whereas it fits in nicely with my work routine.

Still no news on the CT scan I had last week. I'll be honest, I'm starting to get a bit worried. For the last 7-10 days I have had this cough which I can't seem to shift. Has it spread? All will be revealed soon I suppose. Still, I take great heart from knowing I'm in the best place I could be for the right care. Fortunately we live relatively close to Liverpool Royal where they have a specialist Sarcoma Clinic, and where they take patients from all around the North West.

4 million people they cover, with a yearly count of 120 for Sarcoma. I make that a 1 in 33,333. I knew I was special.

Until then, life will carry on as normal. I need to cheer my ass up a bit though. I have a wonderful family at home and need to focus more on the things that are important.

 

Waiting Game

Either the Sarcoma is getting bigger, or the cold weather is making my leg more painful. Over the last couple of days the area on my inner thigh is starting to feel tighter, like someone has their hands wrapped around my leg and they are squeezing the life out of it. I am also starting to feel the cold foot more. I don't know if it has anything to do with the cancer, but when my leg has been bent for a while, it seems to be cutting off some blood flow. Straighten my leg and things feel normal again. Its not painful as such, I can just tell something is happening down there. I really cant wait to start this Radiotherapy.

I can't wear my jeans anymore. It is quite uncomfortable around the area, and to me the swelling looks obvious through the jeans. Maybe not to other people, but I can tell and it makes me feel uncomfortable. Over the last couple of weeks I have been wearing jogging bottoms. This is defiantly for comfort reasons rather than making a fashion statement. I hate the things to be honest, I look like a right scally at times, but comfort is the main priority. Maybe it is time, as Emma suggested, to invest in some combat trousers or something similar.

One of my main worries over the past couple of weeks has been of the financial kind. My current contract with this employer was coming to a close at the end of January, but the Project Manager has since told me he would like me to run another job for 6-8 weeks near Delamere. He is a good man. He wouldn't want to see me go through any financial hardship whilst undergoing Radiotherapy and has done his best to keep me going work wise. They also understand that I will be doing my daily trips to Clatterbridge Hospital sometime soon for my Radiotherapy treatment and have been very accommodating. They have no obligation at all to keep me here, but they are finding uses for me and are very understanding.

No update on the CT scan results as of yet, I will call Sarah (Sarcoma Nurse) tomorrow to see if there have been any developments. I also need to book to see the Oncologist to discuss the Radiation treatment, still not heard anything on that front.

I recently came across an article which tells of Sarah's recognition for her hard work. I feel blessed to have a good team working for me. Sarah Massey's Christmas Star Award

  

Tea Selection

it just occurred to me that it could be quite possible that my selection of teas may be the culprit behind some of the sleepiness. Ironically I have been drinking Green Tea for a couple of years now for its health benefits, one of which is cancer prevention. Swapping the caffeine for Camomile has a really calming effect, but falling asleep at the desk is a bit too much.

Waiting for CT Results

Feeling sleepy today, struggling to keep my eyes open at work and can't really concentrate on anything. I'm not sure if its anything to do with the cancer, I have read on a few sites that it can cause fatigue, especially when the treatment starts......but its more likely that is having a few drinks on Friday and Saturday which have caught up with me, takes me a good few days to get over it now I'm mid-thirties.

Still waiting on the results of the precautionary CT scan I had on Friday. I'm not sure how long it takes, but I'll call the nurse on Wednesday to see it there is any update. I just want to get the treatment started.

On another note, I have been looking into my Critical Illness cover and hopefully will hear back from them in the next couple of weeks. It sure will be nice to have a bit of financial backing whilst going through the treatment and recovery. The wording in the policy is a bit obscure but fingers crossed.

A bit of a shout out for my blog this morning on Sarcoma.org. Good luck to Darren Evans with his blog darrenevans.weebly.com which has been entered into the 2016 UK Blog Awards. I will work my way through the remainder of his blog over the week, a great read.

Vote for Darren's blog here

CT Scan

This morning brought with it the CT scan at the Royal Liverpool University Hospital. It was a scan of the Thorax, Abdomen and Pelvis area, just as a precautionary measure to make sure the Sarcoma hasn't gone on a little journey through my body.

I was impressed with the speed of service in the CT Scanning Department. My appointment was for 9.35 am, but I was seen as soon as I arrived at 9.00 am and was out of the hospital for 9.30am. Two hours before the scan I had to drink some Gastrograffin mixed with water to make the scan clearer. It was quite a struggle to hold it down to be honest I found that stuff disgusting.

So once into my gown, I was lay on the bed for the CT scanner and injected with some warm x-ray dye. The nurse wasn't kidding when she said it would make me feel like I was really hot and needing to pee. Such a weird sensation. The scan began and after holding my breath several times as the special piece of machinery told me to, it was over! 3 minutes on the scanner, then changed and back off to work.

Maybe a few beers tonight.....medicinal reasons of course.

Now the wait for these results.....always waiting for something :)

Kind Words

There are a lot of lovely people out there sharing their experiences on the Macmillan online community. Thank you all for your kind words and I wish everyone the best with their own battles. Its amazing how things bring people together.

This message from Carol was very encouraging and I thank you. Your situation sounds very similar to my own and I admire you for what you have come through.

Hi Tom and Emma

I also was diagnosed with a myxiod liposarcoma in August 2014. I underwent 5 weeks of RT in November at Dundee and December 2014 and followed with an operation to remove the 'lump' in February 2015 at Aberdeen.  The lump weighed in at a small melon - 2.5kgs. I had a 4 week stay in hospital to manage the wound and it took until August until it had healed sufficiently not to require dressings. I have limited movement in my knee (still not able to bend fully - about 10% at the moment). However saying all this I am still here so I'm not complaining.

I don't want to scare you as everyone is different and you are much younger (and probably much more fit than I am).  RT did work for me as it defined the margins of the tumour and did something to the mass which all helped when it came to the operation to remove it.  The specialist surgeons and nurses are fantastic so you will be well looked after.

In terms of support, Macmillan nurses are brilliant and can advise you about financial help if you need it.  I'm not sure if you have a Maggie's Centre near to you but they are fantastic as well (for both you and your wife).

If there is anything you want to ask about then feel free - I wish you well and good luck with all your scans & RT

Take care

Carol

Positive News

Emma and I went to an appointment at the Linda McCartney Centre this morning at Royal Liverpool University Hospital to discuss the biopsy results with Mr Yin. So I have been diagnosed with Sarcoma, Myxoid Liposarcoma to be exact.

I cant believe how positive we are feeling after coming away from hearing confirmation of the cancer! The type of Sarcoma responds really well to Radiotherapy and being relevantly young and healthy things are really looking up. Treatment will start within the next couple of weeks which I am strangely looking forward to. Because the type of cancer responds well to the Radiotherapy that will be the first step. Shrink this thing and then whip it out. It was really reassuring to also hear that they do not expect the cancer to travel anywhere, but there is a CT scan booked for the morning to have a look so fingers crossed.

I also feel confident that the team at the hospital know exactly what they are doing, Sarah the Sarcoma nurse is lovely (she told me a few drinks would do me no harm).

On the whole, feeling extremely happy, happiest I have felt for weeks.

Feeling "Normal"

Second day back in work today, and apart from this dry cough which remains from a bit of man flu I have had recently, I am feeling relatively "normal". Work has been hectic this morning which helps a lot, and in turn brings out the best in me. I am slowly coming to terms with the fact that I could well be taken away from the hustle and bustle of construction life for some time, and I'm going to miss it, let alone the characters you come across. The sense of satisfaction after a hard days work is something I will have to live without for the foreseeable future, with numerous visits to the hospital the more likely pastime. I can't wait to get back to it already and I haven't even had my diagnosis! 

Seems like I have passed the man flu onto little Alfie.....poor little soldier.

On another note, I found out that Sarcoma has a special colour ribbon. A nice bright yellow.

Back to Work

So this is my first day back in work after the Christmas break. Its hard to settle back in knowing that on Thursday we have to go through the motions of confirming the cancer. The scans provided what seems to be enough evidence to indicate it is a malignant tumour, and I'm not expecting the biopsy results to determine anything different. It will however to be a relief to begin discussing the treatment route.

I feel like I shouldn't be in work, like I'm not much use to anyone, and knowing that I could be leaving any day to begin treatment just makes things feel pretty pointless. However, professional to the end I will continue the best I can, even if it is just to have everything in place to make life easier for my successor.

I'm self employed, I work for my own Civil Engineering company. Those who know me, will know what I am like worrying about money and not working.

 

Emma phoned earlier and little Alfie is feeling unwell and sick. Main priority at the moment is making sure the little spud gets well

I'm starting to think I might get into this blogging lark, I'm not one for sharing emotions too easily but by pressing a few keys on a laptop, seems to make it easier. Might also help pass a bit of time in the future whilst I am undoubtedly confined to a bed, or hopefully a sofa in front of the telly.

Early Days

This is me, this is my family, and my world. My pride and joy Alfie, and my wonderful fiancé Emma, without whom I don't know where I would be right now. Little boy number 2 will be joining us in April 2016 and I really can't wait, parenthood has been a blessing in our lives. This will be my way of documenting a journey down a long and hard road, for both my boys to one day read and understand, and a platform to share my experiences with anyone who finds themselves in a similar situation. 

It all began early November. Sure, I had noticed my thigh getting slightly bigger over the previous months, but being a man, thought nothing of it, assuming one day it would go away. Maybe my left leg was just getting stronger than the right? Maybe I was just fatter one leg and had never noticed? 

A night out for my brother Phil's birthday in Manchester, and I was staying in a hotel with my other brother Tony. Unusually we were running a bit late, so it was a bit of a power walk across the city centre from the hotel to meet everyone at the restaurant. That was the start of my concerns. As far as I was aware, the swelling on my thigh has been there for a few months, no pain, no problem. In hindsight, maybe I should have had it looked at earlier.

For the next 3 or 4 days, the area of swelling was quite painful, but not enough to stop me getting on with my daily routine. I put this down to the hard walking that night, time to get to the GP to have it checked out. A subsequent ultrasound scan on the affected area suggested I had ruptured a muscle, and should really be in a lot more pain than I was. The man who carried out the scan was surprised I was able to walk, but nevertheless arranged for me to have a MRI scan the following week to get a better understanding of what was going on. I knew there and then that this was not a torn muscle, surely I would as he said, be in much more pain. 

The following week, early December 2015, I was called in to see the GP to discuss the MRI results. It hit me hard when he said it was a tumour and it took a while to sink in. I must admit, my knowledge of anything to do with such things was very minimal. All I could ask was "that's pretty serious right?". I know if Emma was there with me she would have asked all the right questions and not just sit there like a potato like I did. An appointment was then made to see a specialist at the Royal Liverpool University Hospital at the Sarcoma Clinic.......what is a Sarcoma? Google when I get home.

Reading about Sarcomas was pretty upsetting, even when I tried to put the phone down and forget about things, I would find myself picking it back up within minutes to look again. Finding things to occupy my mind until we saw the specialist was hard, but I did, and wont bore you with the details of the mundane tasks I did to get through the week. 

Mid December, and it was time to see the specialist. I wont go into much detail as the diagnosis is still unconfirmed, but he was pretty sure from the scans that this thing in my leg is malignant....90-95% in fact. Not what we wanted to hear. He was very reassuring and arranged for a needle biopsy the following week at the same hospital to confirm things. Things started to sink in from this point. He knows what he is talking about, he sees these things every day. I have Cancer.

Just before Christmas, the biopsy at Royal Liverpool was painless, a lot of clicking could be heard, and lying in an uncomfortable position for 40 mins was not great, but I'm sure that's nothing compared to what the future holds. Thursday morning will raise a lot of questions and hopefully provide many answers when we go back to see the specialist. Until then, chin up, and try to get on with things.