The Reality of Immunotherapy Treatment

The morning of April 10 dawned and I was ready to start immunotherapy treatment at the Royal Marsden Hospital. I had managed to work myself into stressed state, thinking about the laundry list of potential side effects and how these would impact me especially given I was feeling so good. Arriving at the hospital, I went for blood tests, only to find out that I have small veins, it took 3 nurses and the best part of an hour to actually take my blood. I used to find these situations made me squeamish, but I am now less of a prima donna and take them in my stride.

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I had lots of questions for Dr Larkin mostly about the side effects of the treatment and was told that as everyone reacts differently, I should stop worrying about what’s happening to other patients and that the team can deal effectively with all the side effects as long as they are kept informed of all symptoms if and when they arise.

After signing lengthy consent forms, I was ready to get started on the first of 4 treatments of the combination immunotherapy drugs ipilimumab and nivolumab. I will have the treatments (3 weeks apart) and then a scan at the end of June to assess its effectiveness and decide on next treatment path. Keep everything crossed folks that I respond to these wonder drugs.

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Having the treatment itself takes 4½ hours attached to an intravenous drip seated in a comfy lazy boy chair (fortunately you can go to the loo). David sat with me for the 1st treatment but I have found that the time passes much quicker with one of the “girl squad” in tow to chat, gossip and have a laugh, so Jen attended treatment 2 with Liz at treatment 3.

All of the staff at the Royal Marsden are amazing, where you are treated as a VIP and nothing is too much trouble. When my friend Jen accompanied me on treatment day she commented how calm the atmosphere is and how it doesn’t feel that you are in a hospital. This is testament to all the staff from the cleaners, receptionists, nurses to the consultants who treat you as an individual, with lots of care, respect and a big smile. Despite the severity of my current health situation, which obviously I would rather not be in, I feel extremely fortunate to be one of their patients.

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We have also got into a routine from treatment 2 and 3, whereby I have my bloods taken the day before the treatment to help speed up the process. David accompanies me to the appointments with Dr Larkin and then we are allowed to pop out for breakfast whilst the pharmacy makes up the immunotherapy drugs. These have to be made up on the day and only after I have been weighed and my blood tests approved by Dr Larkin. The drugs take around 2 hours to make and have to be used within a 24-hour window. The discovery of the Ivy café on the Kings Road 5 mins from the hospital has made the treatment days pass by quicker and we hang out there with the Chelsea wives while the pharmacy makes up the immunotherapy drugs. The people watching, and girly chat all make for top entertainment and you even have to book a table there at 10.30am. We head back there after treatment is finished and celebrate with a virgin mojito before heading home.

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I have now completed 3 of my immunotherapy treatments and am feeling really well. Fortunately I have had no significant side effects with the exception of a dry mouth and strange metallic taste which is being dealt with drinking copious amounts of water (where is it all going?), eating water melon and using xylimelts during the night. I have also given up alcohol, which is also helping me feel really well. I have been told I am glowing and my skin feels amazing so maybe there is some truth in what they say about drinking. Apart from a couple of evenings out and listening to the utter garbage people talk at 1am after a few drinks when sober, I have not missed it.

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At the outset of the treatment, I feared that the adventurer in me was going to be taking a 12 week break, after the oncologist told me in no particular order there should be no driving, cycling or climbing up ladders with a chain saw. However, there was no mention of rock climbing, so at the first opportunity David and I headed off to the Peak District at Easter and I was soon climbing up mountains, which I love. We have also had wonderful weekends in Whitstable, West Wittering and the South Downs with very special friends and family.

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I would also like to say a HUGE thank you for all of the lovely messages of support I have received since publishing the first blog. There is no doubt that I wouldn’t be coping as well without the very special love and support from David, plus family and friends and that means more to me than words can say.

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We have also been planning the fundraising for the Royal Marsden and the next blog will follow shortly and reveal more details. May is also Melanoma awareness month and to find out more about how you can prevent this horrible disease that currently kills 6 people in the UK every day please refer to http://www.melanomauk.org.uk/about_melanoma/

19 thoughts on “The Reality of Immunotherapy Treatment

  1. I’m glad the treatment is going well Shiona. You are certainly looking amazing. VIP treatment and regular visits to The Ivy Cafe… I would expect nothing less! Surrounding yourself with positivity and girlie gossip is certainly the way to go! We will be following to hear more and get involved in the fundraising activities xxx

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    1. Thanks Karina the girl squad and the Ivy Cafe Chelsea has definitely made these long treatment days more fun oh and the gold cars on the Kings Road. Hope to see you soon in the new abode.

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  2. Hi Shona,
    Saw your blog on Jen’s FBpage. So sorry to hear about the melanoma. The blog is great – thanks for the updates on how things are going. Your calm, rational, “glass half full” attitude to everything is inspirational. Sending lots of love and wishes for a speedy recovery. Christine xx

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  3. Shona this a great way to let us know how things are going for you and David without us bothering you and we are both willing you the results you want in the near future
    Thank you for allowing us access to what is happening
    Love and best wishes
    Julia and Mike Knowles xxx

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  4. Hi Julia, I am being kept entertained with Mike’s holiday posts from around the world, loving the lady ironing in her bikini keep them coming. Hope to catch up soon and thanks for your kind thoughts.

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  5. Hi Shiona, you are looking so well and am so pleased to hear that so far very few side affects. Thanks for being so selfless in raising awareness… it’s because of you I went straight to get a mole checked, the specialist took one look at it and said that has to come out. Thank you. Sending you so much love and best wishes for a positive outcome – lots of love Carryn xx

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    1. Hi Carryn, Thanks for your message and so glad that you went to get your mole checked, fingers crossed its ok. I am doing fine so far and fingers and hopefully that will continue. Ms Tarver is the next member of the girl squad to join for treatment day which no doubt will be fully entertaining watch this space. Hope that life is going well in NZ bet you dont miss the trips to Canary Wharf I certainly dont. I’ll keep updating the blog and am enjoying writing it. Lots of love ShionaX

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  6. Shiona, I feel ashamed about complaining about my ‘bad back’ when you are out there climbing mountains with the zest and vigour of someone half your age in the best of health !! Your truly amazing positive spirit oozes out of your every pore and whilst I am sad that you are having to go through this harsh treatment, I am sure you can overcome anything. I am loving the blog and thanks for keeping us all informed of your progress !! The hills are alive with the sound of Shiona’s hiking boots …😘

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    1. Hi Sam, Thanks for your message, I am finding the blog cathartic to write and its an easy way to keep everyone up to date. The hiking boots are well and truly alive and awaiting their next outing soon. I have to say the yoga and pilates have also been playing a big part in keeping my head and mind straight. I also feel very fortunate to be having this treatment as it was only made available in the UK last year and so far so good. Looking forward to catching up with you and Ian soon (at the Baldock party? or later in the summer. Lots of love ShionaX

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  7. Dear Shona
    Your blog is inspirational – thank you for sharing your journey. Living out here in the UAE we are constantly reminded of the dangers of the sun and friends like you sharing their experiences really does prompt others to get themselves checked for a while range of cancers and conditions. In fact Lauren is now 16 and a half and she also needs to be aware…
    With love to you and David – we will keep you in our thoughts and prayers and look forward to seeing you when we are home….
    Paula and Martin xx

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    1. Hi Paula and Martin, Thanks for your message all has been going well so far next treatment is June 14. I will keep you all posted and look forward to catching up in the summer when you are back. Lots of love ShionaX

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  8. Hi Shona, We’ve just read your blog, if positivity alone would beat cancer you would be through it!We’ve got our fingers crossed for you. Got the boys to walk 50 miles in the Atlas mountains over Easter- we’re not quite up to your Kilimanjaro standards yet but you’d be proud of them, all our love Nick, Sheena & the boys xx

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  9. What a positive & uplifting blog Shiona!! I’m glad the therapy hadn’t stopped you from adventuring. Sending you lots of love xx

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  10. Hi Shiona, Your blog is inspirational, your positive attitude is amazing and shines through. Glad to read the treatment hasn’t left you feeling dreadfully sick and that you are still able to go walking and climbing! (The Peaks our favourite place). Thinking of you, Chris and Julie xx

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