Skip to main content

Cancer Treatment Review

Eighteen month post relapse treatment review. Bellybutton Panda

18 Month Post Relapse Treatment Review

In November 2016 Ryan was given 2 days to live when the feeding tube he had ruptured his stomach and caused Peritonitis.

In September 2017 Ryan was given a 3 months prognosis when his lymphoma relapsed. The doctors said his kidneys were not strong enough to cope with chemotherapy a second time.

Then we were given the opportunity to try a new immunotherapy treatment. The doctors could not give us any stats. Either it would work or it would not. What did we have to lose? The Drs just hoped it may give Ryan a few extra months.

On Wednesday 6 March 2019, Ryan and I met with his Oncology Consultant for his 18 months, post-relapse, treatment review. Dr C is more than impressed at how well Ryan has been able to tolerate the immunotherapy treatment with little to no side effects.

Immunotherapy Treatment

Ryan is not cancer-free, the Epstein Barr viral load continues to spike in his blood plasma but at the moment the immunotherapy drug is keeping the cancer at bay. It hasn't gone but it hasn't got any worse. Dr C has agreed to apply for funding for a further 6 months treatment. With a 2 year review in September.

The routine remains the same. Blood tests every third Tuesday in Carmarthen and every third Thursday for Pembrolizumab treatment in Cardiff.

We have also applied for Ryan to attend a college course in September studying Animal Care. Ryan would like to work with dogs either in a boarding or rescue kennels. He has a natural aptitude for maths, computing and science but feels these options would be too boring for him. With everything that he has faced it definitely changes your outlook on life and doing something you enjoy is paramount.

The battle continues...



Comments

  1. Anon12 March 2019 at 05:07

    Fascinating as ever! You all (the whole family) project such calmness and competence - a lesson to us all xxxxx

    ReplyDelete
    Replies
    1. @SarahLou12 March 2019 at 10:27

      Thank you for your lovely comment. Learning to live with a long term health condition has been hard, but we are getting there and are lucky enough to have a fantastic support network of family, friends, social workers and therapists.

      Delete

Post a Comment

Thanks for your comment. We appreciate having you along for the ride.

Popular Posts

Missing Education due to Illness

The Importance of Attendance If you read any news articles on education, correspondence from your child’s school, or are simply clued up on parenting then you will know the importance of school attendance. Schools place a great deal of focus on targets and will often offer incentives and competitions to encourage and increase attendance figures, but what if your child has a serious illness. What happens if they really are not well enough to attend school. What happens then? Attendance targets at Ryan's school are currently set at 95% attendance for the school year. Therefore realistically your child can only miss 10 school days due to illness. Medical appointments such as GP or Dentist do not count, but you are encouraged to make these appointments outside of the school day where feasibly possible. If your child consistently misses school, even if it is only one day a week, that equates to 39 days over the school year. Even missing one day in a week results in pressure on the
11 comments
Read more

Chemotherapy Cycle 5

What is Normal? With this being our penultimate cycle of chemotherapy I have had several family and friends comment to me “oh I bet you can't wait to get back to normal”. This has really thrown and upset me because it seems to come across that they have failed to comprehend the fact that we have 2-3 years of maintenance ahead and at least two more general anaesthetic surgeries. Not to mention physiotherapy as it is expected Ryan will take 12+ months to heal from the effects of being poisoned from the inside out. Normal is long way off yet. While everyone else appears to all be getting excited that Ryan is coming to an end of his chemotherapy protocol treatment, Ryan himself is becoming more and more tired with the cumulative effect of the onslaught of the chemotherapy drugs and is spending long periods of time in hospital after each cycle with infections due to his impaired immune system now as a result. Ryan is far from excited. Ryan is exhausted. We still have one more cycle t
6 comments
Read more

Questions to ask after Cancer diagnosis

Cancer Sucks I have shared with you Ryan's lymphoma journey where we have talked about the ups, the downs, the protocols for drugs, the side effects, but I realised recently I have never shared the questions. This post is all about what to ask when you receive a diagnosis of cancer. Receiving a cancer diagnosis is never ever going to be seen as good news. It can never be dressed up or made pretty. It is devastating, it is gut-wrenching, it is life-changing. There is so much information to process you will not think of the questions you need to ask or you will have hundreds of questions you want to ask all at once. These are just some of the questions you can ask once you have processed the news, in order to gain a better understanding of your fight ahead. General Information What type of cancer do I have? Where is it located? What are the risk factors for this disease? Is this type of cancer caused by genetic factors? Are other members of my family at risk? What lifestyle c
5 comments
Read more

Worrying About the Future

  Worrying About the Future. Ryan said to me recently. "Childhood gave me Autism. My teens gave me cancer. What will adulthood bring?" Big worries for someone so young. So much pressure and conditioning are placed upon us about the importance of education and the set path that the majority of us will take through the system to university and/or the job market. What happens if you do not follow that path or miss so much education that the path is no longer open to you. How do you plan for the future? What options are there available to you? Ryan was excluded from his primary school in year 2 and I home schooled him for a year while we worked with the Educational Psychologist to find a placement that would suit his complex needs at the time. Due to his speech, language and communication difficulties the decision was made to withdraw him from Welsh-medium education and focus on English only which meant our choices were limited in the area of Wales that we call home. We
Post a Comment
Read more

Peritonitis

Emergency Surgery On the morning of 25 October 2016 Ryan was complaining that his PEG feeding tube was unbearably painful. He was due for a review anyway that day at Velindre Cancer Centre and a PEG specialist nurse came for to look at Ryan. She said the site was a bit weepy and raw, she thinks he possibly caught or pulled it in the night. She is confident that it is fine and she also gave it another good clean.  A week on and we are back to square one. The district nurse came out on Monday 31 October 2016 to advance (turn) the PEG tube as is needed each week after the first month. The nurse was unable to move the disc and caused Ryan an incredible amount of pain. We ended up having to go to the Teenage Cancer Trust ward in Cardiff, where two gastro nurses met us and spent the best part of an hour, torturing Ryan while they 'forced' the PEG to move, which they eventually did. Or so they thought.  The following week, 7 November 2016, the district Nurse came again to the h
7 comments
Read more