Posted By: Dizz_zzey 6 Months Post Rads - 05-05-2020 12:32 PM
I'm now 6 months post rads and I can't believe how much better I feel. I still get a bit of mucus in the morning, but I find that I can clear it with my breakfast smoothie.
I have more energy, which is great, but I go through periods of fatigue. I've seen that cancer patients get the fatigue periods for a few years after completing rads and chemo.
My 2nd CT scan was clear. I do have a small lump in my neck, but it's unchanged from my last scan in Jan.

I've not used my G-tube in over 6 weeks. Unfortunately due to C-19 my tube has to remain until July at the earliest. Frustrating but understandable. I'm still trying solid foods but I do eat a lot of soups and ice creams. My weight has stabilised though.

My speech is fantastic. My speech therapist said that it's exceptional considering I have no tongue and was originally told I would never speak unaided. Determination and singing badly to the radio has really helped. I can now hold a conversation on the phone, with a stranger. I just can't say my own surname though grin

My sister and I have booked an all inclusive holiday to Portugal. Hopefully we'll be able to go.
Posted By: gmcraft Re: 6 Months Post Rads - 05-05-2020 02:50 PM
Really great news! You are obviously doing very well. The tube is only a minor inconvenience compared to all that you’ve been through.
Posted By: ChristineB Re: 6 Months Post Rads - 05-13-2020 12:14 PM

Thanks for posting your uplifting update!!! smile

You are a shining example of someone who went thru heck but still managed to overcome the side effects and did everything possible to make progress in and uphill battle with speaking and eating that's paid off, tremendously. Excellent attention to detail has helped you get thru everything. Im sure theres lots of newer members who have recently discovered our sight reading your posts and learning tips on how to succeed.

As always, Im wishing you all the very best with all your endeavors. Hope you stop by once in a while, your posts are excellent motivators for those in the middle of their fight. Im already looking forward to your next update smile

Be well smile
Posted By: Dizz_zzey Re: 6 Months Post Rads - 05-20-2020 08:36 PM
Thank you Christine and GM. I really appreciate your comments.
I'm now off of the pembrolizumab trial, with 5 doses to go. Unfortunately my body isn't producing some hormones or cortisol and my BP keeps dropping. The root cause analysis pointed to the immunotherapy drug, so to protect me, it's been permanently stopped. Now we're trying to find out if the loss of hormones and cortisol production is temporary or permanent. Some bloods will happen on Tuesday 26th and I'm waiting to see an endocrinologist to find out more.

Other than that I'm still doing well. Still trying different foods etc. I'll keep popping in because you all mean a lot to me and this forum has so much valuable information . I just can't give you all up.

Hope you all staying safe.

Oh quick high calorie milkshake..chocolate ice cream blended with full fat milk (in UK we also have gold top milk which is higher in fat. I drink 3 litres a week) hazlenut chocolate spread, hersheys chocolate syrup, single cream (your half and half I think) and a chocolate ensure. Utter bliss.
Posted By: gmcraft Re: 6 Months Post Rads - 05-20-2020 10:20 PM
You are drinking (!) that shake? Wow, that’s a huge improvement from needing a tube. I hope they get to the bottom of what’s caused your PB to drop. Are you on a drug trial? Whatever, I hope it’s all smooth sailing for you from now on.
Posted By: Dizz_zzey Re: 6 Months Post Rads - 05-21-2020 08:43 AM
Sometimes I drink that shake if I know I've not eaten enough. At the moment, an average daily menu is a homemade smoothie for breakfast (between 550 - 600 calories), lunch is a home made soup plus an ice cream or 3 chocolates from a box and a cup of tea, dinner is a canned soup, a yoghurt, some jelly (jello) made with ensure. I might have a snack of some more ice cream with chocolate or raspberry syrup, or some biscuits with a cup of tea.

My husband gets me to try some of his dinner. Last night I tried some lamb sheek kebab (minced lamb and mint of a stick). That was good, but I needed mint yoghurt to help it down. At the weekend we're going to have a little buffet. I have dips (hummus, sour cream and chive, aubergine dip, guacomole) and some nibbly bits like sausage roll, cherry tomatoes, mini corndogs, fresh peppers, thick cut chips (fries), rice crisps (chips) etc, just to let me try different things. I'll have lots of water with me. If I can't eat it, then my husband will have a great meal for a couple of days. I always have some Ensure in the fridge as back up, it's especially helpful if I'm too tired to eat.

I haven't used my feeding tube in 8 weeks. I flush it every day with water and that's it. I can't wait to get it removed.

At the moment they're testing me for Addison's Disease, which is where the body stops producing cortisol and other hormones. It causes a drop in BP, nausea, fainting, lack of appetite and some other bits. Fingers crossed its all temporary though.

I was on a an immunotherapy trial.I had 2 doses before surgery to see if it would shrink my tumour, and then I was supposed to have 15 doses post surgery, over 12 months, to work as a preventative against it all coming back. I got sick and the trial was stopped at dose 10 when they realised it was the immunotherapy causing me to be unwell. As I'm not getting better without steroids, my team have decided to stop the drug.
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