Hope you have had a lovely summer and those dealing with treatment, hope everyone is coping ok!
Well what a year, my last chemo was December and once well enough the holidays began, I went to Amsterdam for a lovely weekend and to research cannabis oil, we went to Iceland which is still the holiday of the year. I did a girls trip to Montenegro, what a lovely place and then we hit south of France for spring bank and well bucket list action at the ready and we saw Lewis win at Monaco, top seat in front of the swimming pool, lots of crashes and action we loved it. Then is escaped with a friend whilst my son was on his French trip and went to port de soller in Mallorca and had a bit of indulgence at the lovely esplendido hotel, we will be going back. I even did some yoga on a standup paddle board! And never fell off! The summer involved 3 trips back and forth to Wales, a week in my tourer, a week in a static and a week in a lovely house looking over Abersoch bay. Great summer, but now the crap begins!
So back in May I was told I was platinum resistant and was starting to grow, 2 spots on peritineum and marker going up from 75, 135, 245 in May, then in July marker shot to 1165 and now multiple spots on peritineum. So doc wants to start chemo, I say no thanks, see you again in September. So doc says I reckon you will be in for 2 drains before chemo and yep I have had 2 drains, one at the start of the holidays, only 1 litre off and didn't ease discomfort. I have a trapped pocket of fluid pressing on the liver, which causes pain and the. The liver presses on the diaphragm which causes a shooting pain in my shoulder. Anyway fluid built up again and felt quite poorly before last drain, not managing to keep much down. Had drain last week and they took 4 litres off and wasn't pleasant. I think the fact I am slim anyway, once it has drained, bloody horrible like having an alien inside you, I ended up having morphine which then scupper my plans to drive home. Anyway drain done and have a huge appetite suddenly which is good in preparation for building up before chemo.
So I went to the doc on Friday thinking I knew what the plan was, but that went out the window. I was going to be offered dose dense carboplatin and taxol which I was a bit worried about as the caries trial where my tumour samples were tested reckoned that carboplatin would not be any benefit to me. But docs still thought this was my best option. I had a second opinion at Christies and singing from similar hymn sheet to Leeds, but he did say he might choose cisplatin. So on Friday I asked a bout trials and there is a new trial involving taxol and a new drug, but to be eligible for the trial I could not have taxol now. The trial isn't quite ready and doc wants me to have conventional chemo before doing the trial, so I am now being offered cisplatin and etopiside. The cisplatin meant to be harsher, the etopiside is in tablet form for 2 weeks. So he is discussing the plan with the rest of the team and I see him in a fortnight. I was expecting my marker to be through the roof but from 1165 to 1280 so could have been worse. I expect I will need another drain before chemo which I am not looking forward too, so need to eat as much. As I can before my belly gets too bloated to want to eat, I am in a mission to put weight on and build up muscle mass before chemo. Diet has been relaxed a bit, I am allowing myself some dairy in the form of good cheeses and clotted cream.
The freezer stock up has begun ready for chemo.
My garden has been amazing lots of organic veggies for my juices. Oh and spa treatments....... Well the best spa day has to be the Coniston Hotel, amazing spa, amazing countryside and fab treatments. For a truly amazing authentic experience the ayevedic spa in wetherby is amazing. They do retreats and specially tailored treatments for cancer patients, if anyone is interstellar, best treatments I have ever had. I am going back on Tuesday.
So when chemo starts I plan if possible to try to get to the hyperbaric oxygen chamber first thing in the morning before chemo to give my cells the boost of oxygen and then will be trying to get as much oxygen as I can depending on how well I am, but ideally I will be doing oxygen 5 days, 3 days at the least. I am also going to reduce my carb intake by at least 20% for the day before, the day of chemo and the day after. I will also be carrying on with the canabbis and the oil. I take the oil and find myself in the same position I went to sleep in, a,axing nights sleep and i started vaping cannabis half way through the last treatment and what a difference it made, gets rid of the sickness, relaxes me and increases appetite. So will be continuing with that.
I have been keeping an eye on developments mirror.co.uk/science/dad-ca.... This is a new immunotherapy drug which is having success in lots of cancers and my onc says that research indicates it is going to be good for ovarian. It hasn't yet been developed but is in the pipeline, so watch this space ladies. If anything is going to work it will be immunotherapy. There are some other interesting developments around t-cell therapy too, but typically can't find where I have saved it.
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Thanks for this post, Leeds. Your holidays sound so wonderful and the memories will still be fresh and real! I so agree with living life for the moment. As for the subsequent treatments you've faced, I can only sympathise and wish with all my heart that a suitable trial is found for you. We all just need to hang around long enough for something to work - I just know it! So keep planning those holidays. Today and every day x
Fabulous Leeds! I thought I'd had a busy summer,but I think yours tops mine!You are obviously living life to the max and although you have your decisions to make and a journey ahead of you,your attitude is amazing and I am in awe!
Hello, you'e certainly had a wonderful summer! I really enjoy reading your posts, you have such a wonderful attitude. I've started juicing but I can't say I really enjoy the drinks. Not heard about reducing carbs before chemo. Good luck when the chemo starts!
Love love love this post obviously not the bit you're going back on Chemo but just the fact that you're are really living your life. This is what I also try to do.
As Judy says, Wow, wow, wow!! Some fantastic fun times, good for you!!😀👍 Stuff cancer!. I do know what ascites/drains are like though, they're horrible but the relief after a drain is immense!
The cisplatin is meant to be harsh but effective so fingers crossed. Can you have that combo in leeds or do you have to travel to Manchester?
I'm thinking about hyperbaric oxygen after our son's wedding (thisweekend) and trip to visit our daughter in the Dolomites (in a few weeks). I would go through to leeds. Is it expensive? And how do you get appointments, can anyone go or do you need to be referred? Xxx
They have a website and Facebook page. It is £15 a session and session lasts for about 1hr 10 mins. You just phone and book, maybe once you are used to it, start doing the deep dives, getting more oxygen the deeper you go. A 3 week course is recommended initially at least 3 times a week. There are also lots of other lovely things organised through the centre. I'm off to a kombucha making workshop soon.
Kombucha is a fermented green tea drink, sounds yuk but it is lovely, a bit like ginger beer. But fermented foods are amazing for sorting your gut bacteria out. Chemo kills off any good gut bacteria and therefore have been busy trying to build up good good bacteria. Kombucha, I am experimenting with fermented vegetables, they are amazing, there is kefir too, but some what of an acquired taste. I take pro biotic X and digestive enzymes after every meal
Hi there . My rather long reply which praised your post has just been swallowed into cyberspace. Story of my life !
I was really impressed by all you have achieved in your determination to find answers and enjoy life at the same time . You obviously have a very understanding oncologist who agrees with your search for answers and your willingness to try alternatives . Some women ( including myself ! ) are expected not to question the great man ( usually men ) but to go along their decisions without a murmur . I do murmur and very loudly at times but I'm sure that just marks me a s an awkward patient. Don't get me wrong as there are many excellent male oncologists but it's good there are now excellent female oncologists. I do think their understanding of the female body and mind has to be above that of a male doctor. I will probably be shot dien on all those counts !
I got quite breathless reading about all you have done and I am totally in awe of all you are achieving in every aspect of dealing with this monster. I wish you every success and will look forward to future posts .
Immunotherapy looks to be the treatment of the future and I have learnt about it on patient days. I did try to get more info from the link you gave. However I got a page of binary and an explanation that if I could read binary I would probably understand it. Maybe there is another way of finding it. Thanks for all your excellent info and good luck in the future. Take care
Hope you can see now. It was of interest as he had tumours all over his abdomen and no treatment options left and looks like Immunotherapy has kicked it in to touch.
Don't be scared to get a second opinion or ask for a new doctor if you don't like. I insist on seeing the senior oncologist and he is good and also is quite easy on the eye, my own Clarke Kent!
Good for you Leeds and good luck with treatment. Btw I've had an issue with a pocket of isolated fluid (mine was pressing on my bladder). I had a drain then a procedure called an absclerosa which injects alcohol in the sac, with the aim of drying it out permanently. Has a good rate of success. I'm 3c, in my 10th year, several recurrences, on a trial which is working! Never give up!! Merylx
Hi, what an amazing post, had to read it twice to take it all in. How do you take the cannabis oil ? I have some, a year old but ok I think. Should I put some olive oil in and take a drop each night ? I suffer from a dry mouth which wakes me every two hours on the dot all through the night, desperate for a good nights sleep.
Not sure what type of oil you have whether just thc or mixed with cbd? If you are not sure then get some extra cbd. Look up endoca raw cbd and cbd a, cheapest on Amazon. The ratio is meant to be 1:1, your thc oil should be about 70%, but the thc is only 20%, so you will need 4 times as much cbd to the thc. I would start with a grain of thc with 4 of cbd. What is your email and I can send you protocol. X
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