What Do We Know Now! Research & This Cancer

So, what do we know? What do we know about this ridiculously rare cancer? Well we know that the only treatment that I could have had was surgery due to the speed and spread!

We do now know that my DNA need’s to be sequenced to target chemo if possible.

Here is a bit of an explanation…

If you and your health care providers decide to make tumor DNA sequencing part of your care, they will remove a sample of your tumor and, in some cases, a sample of your healthy cells. They may obtain these samples during surgery, if it is part of your treatment plan. In other cases, you may need to have a biopsy.


Your samples will be sent to a specialized lab, where researchers will isolate your DNA and then use a machine called a DNA sequencer to “read” it. They will then analyze the sequence of your DNA to determine if there are any genetic alterations that make your tumor susceptible to certain treatments.


They may also examine the DNA sequence of your healthy cells to determine if you have any inherited, or germline, mutations that increase your risk of cancer and can also influence treatment decisions.


Based on your tumor’s unique genetic alterations, the specialized lab may generate a report that lists treatments your tumor is likely to respond to. Your health care team will discuss the results with you to make a personalized treatment decision.

Full Article: https://www.cancer.gov/about-cancer/treatment/types/precision-medicine/tumor-dna-sequencing

How Am I Going To Stay Alive…

I am trying my best to get research done into this type of cancer, we need a person now on this fulltime who can look at options on mass, this all costs a fortune as it a lot of the information needed and testing is not available in the UK.

This means going to places abroad to have tests done. Time for me is not going to be vast, I probably won’t have much time to get this all done before my cancer grips me again fully!

I am resiliant but can’t be when I get infections, sick and I have mass fatigue.

My Cancer Is Different To Most…

My cancer is an evil packet of cells, they all work on different sub levels and all are very aggressive. They attack me very fast, they also grow and spread very rapidly. Within one month I have 19 or so tumours removed that did not show on a scan the month before!

It is not easily treated and does not respond to most treatment, so surgery is the only option at this time as everything else may make me to weak or increase spread rapidly.

Why Do I Want To Be Happy During All This…

Why not be happy? Why not be happy about every day that I am alive? Back in the day people didn’t ever live this long, being alive is all about living life to the fullest.

Even though I am in hospital, alone and bored stiff, I can still do things I enjoy, crack jokes and smile with others.

Nothing would bring me greater pleasure right now than to sit around a camp fire and exchange stories, sing and be smiley. My life was never about technology when I was younger, it was always about people, interation, friends and being social!

I can’t wait to be myself again a bit more and share that with the world. I really can’t.

Everyone who has helped me on my Go Fund Me and donating via the site you are making a huge difference to my prognosis and others.

The Community…

The community website is being built but due to my extended stay in hospital I have not been able to project manage this properly as I would have liked. We are aiming to have a beta version released and ready this month. This site will then evolve to be a wealth of knowledge, stories from others and be a beautiful hub to help people, no matter what they are going through.


About PeeWeeToms

So what's the story? Well in 2015 I was diagnosed with a Sarcomatoid Carcinoma. To say the least it was aweful, I have managed to get through three years now with it coming back with vengance 4 times. On the 29th December 2017 I found it had likely spread. This is my dialogue with myself.

View all posts by PeeWeeToms

8 Comments on “What Do We Know Now! Research & This Cancer”

  1. I do hope they get the sequencing done. I’ll be surprised if DNA sequencing is not available in the uk since it’s been around for a while. It will help your doctors greatly to understand your case. Also, recently, a new technique has been developed where a patient’s own tumor is taken out of his body and tested for various chemo responsiveness to figure out which one works best and then the “winning” chemo (the one that targets cancer cells best) is given to the patient.
    Good luck Dan. Rooting for you !

  2. I wish someone would get behind you Dan , someone with sway influence and money, there has to be a way to promote your story to a wider audience , I think this is what is needed , Thinking of you everyday , looking forward to reading the post that tells us you have some wonderful news X

  3. I hope you get to go home soon, I’m afraid of what your gonna start doing in there soon with all the boredom. I’m honestly surprised you don’t have every inch of the hospital on a video and uploaded already….every nurse and doctor….🤣😂🤣

  4. So pleased you’re on your way home. My dad’s surgery to remove a 20cm sarcoma is next Thursday at Marsden. Really hoping he’s home as quickly as you. You’ve done so incredibly well. Be very proud of yourself. Can you still look sexy with a drain? There’s a challenge for you Dan.

  5. I am certainly thinking of you and wishing you and your family the best… So, so much going on, so much to deal with at such a young age. And time does not look like it’s on your side, either… Just the same you do have some time, so do the best you can and fight the good fight, as much as you are able!!

    You know when you were talking on another blog entry about all those totally amazing things you used to be able to do and may not be able to again… jumping trains, being wild and free! In a way i chuckled, just because now that I’m 63 i think back on all the stuff i used to do and no longer can, too!! But the way i look at it, there is still lots i can, and I focus on those things, and it cheers me up!!!

  6. Hi Daniel,God can touch You,as He touched me,He can help You live,help You with everything.Please ask me for more information,your life will change!

  7. We do the type of DNA testing here in America. Can your doctor’s send samples to Myriad? This company provides help for people who cannot pay. There is also a company called Foundation One that does testing. I am certain these companies would help you for free with a call from a doctor. I can contact the Myriad Rep. that comes to our hospital. I will try and help! Laura

  8. Daniel, I came across your YouTube and I saw your video actually videos. I am sorry to see that happen to you I honestly don’t know what else to say to you. You made me tear for sure I really hope to God something positive happen to you and hey don’t loose hope be the person you are happy and alive. If you need to talk I am here as we all are your supporters. Love and good wishes to find a solution to you. Rest as much as you can. Everything is going to be alright.

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