Gem/ Carbo : Morning ladies , some of you who... - My Ovacome

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Gem/ Carbo

fendweller profile image
31 Replies

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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31 Replies
doodoolatrice profile image
doodoolatrice

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

fendweller profile image
fendweller in reply todoodoolatrice

Thank you Kerry ,hug received and very welcome

Caleda4 profile image
Caleda4

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.

fendweller profile image
fendweller in reply toCaleda4

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

delia2 profile image
delia2

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

fendweller profile image
fendweller in reply todelia2

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 .

cheryl

OvacomeSupport profile image
OvacomeSupportPartnerMy Ovacome Team

Dear fendweller,

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:

Managing the effects of chemotherapy - fatigue: ovacome.org.uk/Blog/managin...

Managing the side effects of chemotherapy - neuropathy: ovacome.org.uk/Blog/managin...

Managing the effects of chemotherapy - mouth care: ovacome.org.uk/Blog/managin...

Managing the effects of chemotherapy - skincare: ovacome.org.uk/Blog/managin...

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.

Best wishes,

Jo

Ovacome Support

fendweller profile image
fendweller in reply toOvacomeSupport

Thank you for your reply , I will look at the information you have sent me .

Leniko profile image
Leniko in reply toOvacomeSupport

I don’t know your thoughts on CBD or THC, but many find chemo more tolerable when taking it.

OvacomeSupport profile image
OvacomeSupportPartnerMy Ovacome Team in reply toLeniko

Hello Leniko,

Thank you very much for your message and for your question asking for our thoughts on CBD or THC.

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.

Please don’t hesitate to let us know if we can help with any further information or if you would like to talk anything through. You can contact us by calling 0800 008 7054, by emailing support@ovacome.org.uk or by sending us a message through the forum.

Best wishes,

Cathryn

Ovacome Support

Leniko profile image
Leniko in reply toOvacomeSupport

thank you!

JustKBO profile image
JustKBO

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

fendweller profile image
fendweller in reply toJustKBO

Thank you.

Lizzieanne profile image
Lizzieanne

sending positive thoughts and a hug

fendweller profile image
fendweller in reply toLizzieanne

Thank you , sending love back .

Riverflo profile image
Riverflo

Hi Cheryl,

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.

Sending love and best wishes,

Martine

fendweller profile image
fendweller in reply toRiverflo

Thank you Martine ,very reassuring that your ca125 dropped so much ,long may it continues.

Laz66 profile image
Laz66

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

fendweller profile image
fendweller in reply toLaz66

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 .

bananayo profile image
bananayo

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

fendweller profile image
fendweller in reply tobananayo

Unfortunatly I've really suffered with all the chemo I've had ,just had luck ,thank you for your kindness

Hi Cheryl, bless your heart. You have been through so much. Sending my love and and best wishes, Donna 🙏🥰

fendweller profile image
fendweller in reply toPianoplayer731021

Thank you Donna

Artgreen profile image
Artgreen

I’m so sorry this is so tough on you. I wish I could help but I’m sending a hug and lots of love. I’d take quality myself I have to say.

Wishing you the very best

Alex x

fendweller profile image
fendweller in reply toArtgreen

Thank you Alex , I'm going for quality

LesleyGB profile image
LesleyGB

I can't advise as only had carbo/taxo and carbo/caelyx. But just wanted to send you my very best and lots of love for whatever you decide. x

fendweller profile image
fendweller in reply toLesleyGB

Thank you Lesley , I've decided no more , I'm going for quality of life now and more chemo wouldn't make much difference in the long run

LesleyGB profile image
LesleyGB in reply tofendweller

❤️❤️

NewtonEmma1900 profile image
NewtonEmma1900

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’. 🙏💕

fendweller profile image
fendweller in reply toNewtonEmma1900

Ive chosen quality too, thought I'd feel relieved but I feel very unsettled , perhaps I need time to settle

Leniko profile image
Leniko

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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