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    PattyMarie asked a questionEndometrial (Uterine) Cancer

    A friend of mine saw me yesterday and as we chatted I told her I hadn't been out as much in the last year because of my cancer.

    8 answers
    • BoiseB's Avatar
      BoiseB

      I take it as a compliment when "you don't look sick". Before my cancer diagnosis my friends and family had been expressing concerns about my looks. When I was finally diagnosed, I tried to look my best. My daughter was a great help with make-up. When anyone said "you're looking good" I always say "Thank-you, I am trying hard " I think this is a kind answer. I also think it strengthens the relationship

      6 months ago
    • po18guy's Avatar
      po18guy

      Realistically, how should we expect those around us to respond to a life-changing bit of news? Unless it has been expected, it is a cold shot. They have no time to ponder or prepare a response. The variance in replies we receive only reflects individual personalities, as I see it. I would cut them some slack - if we think back, we very likely have reacted the same.

      5 months ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      I have never looked like I have cancer (whatever that look is). I look as healthy as anyone. Even when I was at my sickest during chemo, I looked healthy.

      I have heard a million times that I don't look like I have cancer and I always agree with them - I don't. I actually gained weight (too much by far) after my diagnosis, my color is good, my energy is good ... if I didn't tell someone I had cancer, they would never ever guess.

      I personally think that's wonderful. I feel very fortunate that I look and feel healthy despite a stage IV diagnosis and 7 years of treatment. (I have to say ... most people I know who have cancer don't "look like" they have it ... they look pretty darn healthy ... I think maybe that means that cancer doesn't have a "Look" these days )

      5 months ago
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    PattyMarie posted an update

    Worlds first treatment with ‘acoustic cluster therapy’ to improve chemotherapy delivery
    A patient at The Royal Marsden is the first in the world to receive chemotherapy assisted by an innovative new technology that uses microscopic clusters of bubbles and liquid droplets to enhance the delivery of drugs to tumours.

    18 December 2019

    Karen is currently being treated for secondary cancer in her liver following her diagnosis in November 2013.
    The clusters of microdroplets and microbubbles are injected along with the patient’s chemotherapy and the technology, called acoustic cluster therapy, uses a standard ultrasound scan to convert the clusters into an activated form within the tumour.
    Once activated, with further ultrasound the clusters help to ‘pump’ the drug into the tumour, greatly increasing the amount of drug which reaches the cancer cells.

    Improving the effectiveness of chemotherapy
    This new treatment, is being trialled at the Oak Foundation Drug Development Unit, a joint unit of The Royal Marsden and Institute of Cancer Research which is funded by The Royal Marsden Cancer Charity. This early clinical trial promises to improve the effectiveness of the chemotherapy by better targeting it to the cancer site, and could potentially be explored with reduced doses of drug in order to reduce the severity of side effects.

    The phase I/II clinical trial of acoustic cluster therapy will aim to provide early data on the effectiveness of the therapy as well as establish its safety. The treatment will be used to treat patients with tumours in the liver that have spread from the bowel or pancreas.
    If the trial is successful, acoustic cluster therapy could enter larger clinical trials or trials in other cancer types. The researchers aim, eventually, to use acoustic cluster therapy to boost the chemotherapy used to reduce the size of a tumour before surgery – potentially helping to cure some people with cancer.

    Acoustic cluster therapy was invented by the Norwegian company Phoenix Solutions. It was further developed with proof-of-concept studies by scientists at The Institute of Cancer Research (ICR) and the Norwegian University of Science and Technology, Trondheim.

    The clinical trial is largely funded by Phoenix Solutions with additional funding from the Research Council of Norway. It is also supported by the NIHR Biomedical Research Centre at The Royal Marsden and the ICR.

    Radiologists, physicists and nurses all working together
    Professor Udai Banerji, Deputy Director of the Oak Foundation Drug Development Unit said:

    “Our new clinical trial follows on from promising preclinical research that shows this acoustic cluster technology could help to increase the dose of chemotherapy to tumours, potentially allowing a reduced dose to the rest of the body.

    “This trial is a real cross-team effort involving radiologists, physicists and nurses who all work together to provide the treatment and support the patient throughout the process. We’re hopeful that through this collaborative research we can help open up a much-needed new option for patients with hard-to-treat advanced cancers.”

    Karen Childs, from North West London is currently being treated for secondary cancer in her liver following her diagnosis in November 2013. She is the first patient to receive this innovative new treatment. Karen said:

    “I’m not sure it’s sunk in yet that I’m the very first patient in the world to be receiving this new treatment! This trial is an exciting step for the hospital and a huge step for patients like me, it really would make a big difference to patient’s lives if side effects could be reduced in the future using more targeted treatments like this. It’s an incredible opportunity to be on this trial and the staff at The Royal Marsden have been amazing and very supportive.”

    It’s a very exciting ‘door opening’ technology which concentrates more of the drug in the tumour.

    Professor Jeffrey Bamber, Professor in Physics Applied to Medicine
    Professor Jeffrey Bamber, Professor in Physics Applied to Medicine, who led the work ahead of the clinical trial to further develop and evaluate the technology at The Institute of Cancer Research, London, said:

    “We’re delighted that our work on innovative acoustic cluster therapy – which is designed to overcome barriers to drug delivery that tumours develop – has progressed to the point where the technology is now being assessed in patients for the first time. It’s a very exciting ‘door opening’ technology which concentrates more of the drug in the tumour.

    “We expect eventually to be able to both treat tumours more effectively and reduce the rate and severity of side effects. In the long term we hope this technology will be of particular benefit in difficult-to-treat tumours, such as those of the pancreas. It may also assist new types of treatments such as immunotherapy.

    Taking research from 'bench to bedside'
    “The joint development and evaluation of this technology is testament to the strength of the ICR’s industry collaborations in medical imaging, within an environment where we’re able to bring our research discoveries into clinical trials. The trial itself is yet another example of the ICR’s strength in working with The Royal Marsden to take research from ‘bench to bedside’.”

    Dr Per Sontum, Chief Executive of Phoenix Solutions, which invented the technology, said:

    “We are extremely pleased to announce that Phoenix Solutions is now initiating the clinical development of ACT®. After six years of technical work and pre-clinical development with Prof. Jeff Bamber’s Ultrasound and Optics Team at the ICR, and Prof. Catharina de Lange Davies at The Norwegian University of Science and Technology, the transition to the clinical phase is a very exciting moment for all of us, team and collaborators. We look forward to moving to the next phase of the ACTivate study whose goal is to evaluate the clinical benefits of ACT, then also including Haukeland and Oslo University hospitals as clinical sites.”

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    PattyMarie asked a questionEndometrial (Uterine) Cancer

    I have a few family members that think that because the bad part of my treatments are over I should "snap out of it".

    10 answers
    • Carool's Avatar
      Carool

      It’s odd that anyone would think that once treatments are done, our cancer is gone for sure. Cancer is so feared because of the uncertainty as to whether or not it will return. Cancers aren’t like broken bones or pneumonia, etc. I guess those close to us who know little about cancer prefer to think all is now 100% okay with us.

      10 months ago
    • MissWiz's Avatar
      MissWiz

      They don't seem to understand that the treatment has long, sometimes life long effects. And the emotional trauma can be just as hard to cope with. There's always that part off you that wonders will it return. My favorite response from someone was "well at least it wasn't breast cancer". As if that's the only cancer that is emotionally and physically devastating.

      9 months ago
    • meyati's Avatar
      meyati

      MissWiz-You said--They don't seem to understand that the treatment has long, sometimes life long effects. And the emotional trauma can be just as hard to cope with. -

      Well said, but I'm having this problem with my primary doctor. My nose and sinus was all messed up with surgery and intensive radiation, and she gets mad at me because I have sinus infections. She didn't want to prescribe an antibiotic. She prescribed a sinus relief med that minor side effects attack the nose and lips. I had severe side effects attack my nose, lips and face. She said that I was too old for antibiotics---After she got done with me, I was prescribed 2 different antibiotics- spent over a thousand in co-pays--ER $100 each time, Urgent Care $15, $50 for the many specialists, $5 for my doctor, and meds that cost over a $100. I've had DNA tests to see if I had an autoimmune disease, some doctors cried. They took pictures for my medical chart, Then I lost weight because my lips were too sore to eat-trying to eat set my lips on fire, lack of sleep, and my tears.

      I have had only one sinus infection since October 2018. That isn't bad for someone that had super high rads on the nose for 6 weeks.

      I keep telling her that I have a Gastroenterologist to care for my stomach-Have I been in to any ER, UC, or her about my stomach the last 4 years? I haven't even been to Dr Saad for those problems. I told her that it is her job to keep me from dying from sinus.

      9 months ago
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    PattyMarie asked a questionEndometrial (Uterine) Cancer

    Resources for wigs? Good places to buy them or places that will donate?

    4 answers