Morning ladies , some of you who have been following my posts will know what a shite time I've been having , you're replies and kindness had kept me sane . Now a decision to make, I had my infusion of gem carbo Monday,had really bad side effects, everyone listed , I've always suffered whatever chemo I've been on, I'm due gem only on Tuesday, to complete cycle one ,if you're on the same regime how did you feel after gem only , I just feel so dreadful I don't know if I can do anymore , I know my time is limited now and chemo is unlikely to give me much extra so I feel like I am wasting the time I have feeling so unwell , I said I would try and complete the first cycle at least but not sure how to keep facing this .
Cheryl
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Hi Cheryl, I can't give you any advice on gem as I haven't had it but I'm sure someone else can, so I'm sending you a massive hug instead and lots of love, Kerry
HI Cheryl, I am so sorry that you are having such a bad time of it. I had carbo/gem and the gem on its own the following week and I did not find the gem much trouble. If you feel so unwell is it worth it. Your body probably needs the break. Sometimes quality over quantity has to come first. You really don't deserve to feel so awful all the time. It is a hard decision for you,but I am sure you will make the right one for you . I hope you feel better soon.
Thank you , perhaps I will give the gem a try to finish the first cycle, I see my oncologist the following week so will have a chance to discuss it with him , he was very negative last time I saw him, but in hindsight honest , as you said quality is better now I think
Hi Cheryl. I’m also sending hugs. You’re in a difficult place, but if it were me I would take quality. The main question is can they make you comfortable without the chemo? You want to feel as good as you can. Xx
Thank you Delia , I have some pleural effusion that might be dried up by the chemo , but I'm not getting any bad pain , I now have a morphine patch and usually feel comfortable,I'm thinking quality as well , I've always had really bad side effects from chemo ,which I tolerated when I thought it would give me time and remissions,but that's not happening now so hard to feel dreadful all the time .
I'm sorry to hear that you're struggling and feeling unwell with the side effects of your chemotherapy.
I see you mentioned that you're seeing your clinical team soon, please do share with them what you're feeling as soon as you can. If you have a Clinical Nurse Specialist you can contact, it would be worth getting in touch with them as they may be able to help with some of the side-effects you're experiencing.
In the meantime we have several blog posts with some ideas to help manage side effects of chemotherapy which I've shared below:
This post looks at food and drink as an approach to the management of cancer symptoms and side effects of treatment: ovacome.org.uk/Blog/symptom...
I hope that is helpful. As always, please let us know if you have any questions or need a chat. Our support line is open Mon-Fri from 10am-5pm on 0800 008 7054.
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As you may already be aware, CBD and THC are 2 of the main chemicals in the cannabis plant. THC is psychoactive and causes the high associated with cannabis and CBD is a sedative and does not make you high. While CBD oil is legal to buy in the UK, products containing THC are illegal in the UK for recreational purposes. Accessing illegal drugs could also mean that there is no quality control and it is not possible to know exactly what they contain. If you decide to buy CBD oil it is important to purchase from a reputable retailer selling legal products.
It is important to note that it is always important to speak with your clinical team first before taking any supplements to ensure that they are an appropriate and safe option for your own individual circumstances and that they will not interact with any ongoing treatment.
I will share some articles below which look in more detail about the law around cannabis, CBD and THC, but I wanted to highlight that while legally, certain UK doctors have been able to prescribe medicinal cannabis since 1 November 2018, cannabis is classified as a class B drug in the UK which means that it is illegal to possess or supply it.
In our Spring 2019 magazine, on page 6, we included an article called ‘Medicinal Cannabis: The big questions’ which talks about medicinal cannabis and it’s role in treating symptoms. I will put a link to this information here: ovacome.org.uk/Handlers/Dow...
Cancer Research UK also have an article called ‘Cannabis, cannabinoids and cancer – the evidence so far’ and I will share a link to this here too if it is of interest: news.cancerresearchuk.org/2.... . This includes information about some cannabis-based products that are available on prescription in certain circumstances to help relieve symptoms.
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Dear Cheryl I’m so sorry you’re in such a bad place. I’m sure you will instinctively do what is right for you. Sending much love and courage as you make your decision. X
Yes I have been having similar thoughts about how much treatment I can take. I had the second infusion of gem/Carbo two days ago after a blood transfusion to help me recover sufficiently from the previous one.
The first infusion left me nauseous and really tired. The gem on its own certainly wasn't as bad it mainly left me tired.
I will continue because after one round, my CA125 went from 1380 to 316 so it's doing its job and giving me some hope that it can keep things at bay for a while.
oh gosh.. poor you. No advice on that combo butI guess worth asking what goal of this regime is for you? I remember after every cycle of chemo I felt I couldn’t do another. Its so hard to make a rational decision when you feel so naff isn’t it? I always think about what my best advice would be to someone else if they were in my shoes and this sometimes helps me make a decision. Let us know how you get on xxx
My oncologist was very negative at my last consultation, said chemotherapy was the only option but I'd reached the point when it wouldn't help much , I had four months stable since my last chemo now it's spread to my liver, he talked about time scale, probably less than a year, so I feel I'm wasting the time I have feeling so unwell , I decided to have this chemo to see if it reduced the pleural effusion, I'm still uncomfortable so don't think it will , I think I've had enough now . Thank you for your comments , really appreciate it .
Hi, I’m sorry that this latest chemo has also made you feel so bad, it seems you have had more than your fair share of horrible side effects from all the treatments. Sending best wishes 😘 xx
I don’t have any experience of your current chemo regime so I am just sending love and good wishes. I have not yet had to make the decision but I know it will come. I think I would choose ‘Quality’. 🙏💕
the gem only weeks are much better. Carbo/gem is a rough one, but after one infusion, my CA125 went from 38 to 26. It works, so please try to tough it out. I keep telling myself, “it’s time limited”! 🙏❤️
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Had Gem, Carbo and Avastin Tuesday
Ist chemo gem/carbo
Gem/carbo 2nd line
