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So worried

Hello

I’m sorry to be a pain but I’m so worried. My sister is due to start 2nd line of carbo/cylaex on tues. But she is so tired. No energy what so ever and is full of ascites. She hasn’t eaten for weeks. She saw the oncologist a week ago and he said he had seen worse than her. She’s not sleeping and has to make an hour long trip to the hospital. She goes tomorrow to check she is fit enough. I’m so worried they won’t give her treatment.

Steph

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I felt like this when I was first diagnosed - I could hardly walk into the hospital. They drained the ascites and started me on the chemo, and within a week I was feeling better and eating again. It's worth asking if they can drain the ascites. I have to say that an oncologist saying he's seen worse isn't very helpful! Hoping all goes well for your sister and she feels more comfortable.

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Thank you harpist. I’m just hoping they will do something for her. She’s determined to get to the appointment. I don’t want this to be the end

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Can you go with her? My sister came with me all the time and when I was in the same shape as your sister, insisting having me admitted for stabilisation, which saved my life. I couldn't or drink either, so having IV fluids and nutrition was essential.

One eek in hospital and I was strong enough for the next round of Chemo. The ascites melted away and I could eat and drink and breathe again.

She needs an advocate like yourself to speak up for her!

Good luck,

Laura

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I agree I think a drain will make her feel so much better and she will be able to eat. If she can’t manage solids there are meal replacement drinks that can be prescribed by her GP/oncologist

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Thank you. When she was drained in the past she felt much better. I wonder if they would drain before or after chemo. All these unknowns are just too much.

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It’s usually bloods that determine your fitness for chemo and I would have thought as she is having carboplatin they would want to do a kidney function test. In theory she could have a drain either before or after depending when they can fit her in

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That would make sense. I just can’t imagine she can go on like this as 1 round of chemo is not going to clear this amount of ascites and her cycle is every 4 weeks.

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Hopefully they will be able to sort it before but she could have it between the 1st and 2nd cycle but in some cases a drain is not always necessary. However they will take your sisters wishes into consideration. Is the hospital where she has treatment also your local hospital?

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No she goes to a different hospital for treatment because it’s meant to be a centre of excellence, but she has had a drain at the local hospital last time to save the journey and that worked quite well.

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She can always go to A&E if it becomes too much and they will probably drain her. Which hospital does she go to?

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Steph, I am appalled your sister hasn't had paracentesis. They should drain the ascites so she has room to eat! And breathe! She can be drained either before or after chemo starts. Her doc should be advocating for your sister's well being.

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Steph, She needs to be drained before her lungs fill up with fluid! Pleural effusion is disease progression and extremely uncomfortable to manage.

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Thanks Tesla I will bring this up tomorrow but hopefully I won’t need to as the onc should see for himself.

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Totally agree with Tesla her team should have been monitoring this and should have taken action . Kim x

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Hi Steph

Can understand why you are so concerned . As Harpist suggests can you ask for the ascities to be drained so she is more comfortable to start her chemo .

I had ascities when first diagnosed and because the start of my chemo was delayed ended up needing another 5 litres drained the week before I was due to start . I was so uncomfortable when I went for my chemo show round , could hardly walk or sit . I remember the nurse saying we needed to sort something out urgently .

The chemo will sort the ascities in time but if she is in so much discomfort and not able to eat it sounds like they need to sort this more urgently so she come cope better with the chemo . Hope they are able to make her more comfortable with a drain . I remember the instant relief I felt after , my husband had got chicken soup for tea and I remember making him go out to get fish and chips ! I only had a weekend before my chemo started but felt so much better . Push for an urgent drain if you can .

Love and best wishes to you and your sister. Kim x💜

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Thanks Kim. I do think she needs a drain and hopefully they will do it soon

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Steph, hope isn't an action step. INSIST that her ascites be drained. If I had waited for the medical community to NOTICE I needed help, I would be dead now. Be assertive or get aggressive on your sister's behalf.

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Steph, do not apologize for advocating for your sister! Women are taught to be F_____G pleasant! Don't worry about being persistent! Asking questions does NOT make you a pain! Compliance is for sheep. Fight for your sister's life, no one else will. Love to you both. Tesla

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As silly as it seems she probably will feel better once she starts chemo. I was the same as your sister and was also very breathless with the ascites on my lungs too, with in days of having chemo it took it all away. I wish her well xx

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Drain first before she starts chemo. She will feel much better.. Our onco always drained my wife before each cycle of caelyx or carbo.

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Hi Steph, sorry to hear that your sister is going through this. It's not uncommon to not feel like eating. I had to force myself to eat. I lost about 27 lbs and tried to eat whenever I woke. I did sleep. Cancer is scary and sometimes when you're going through this it's hard to include the family close to you. You don't want family to be scared. So I know I tried to deal on my own . It sounds like you are very supportive which is a great thing. Chemotherapy makes you tired. I hope your sister does well. I had two blood transfusions to give me more energy. Best wishes, Liz

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Steph, follow what Tesla says. It’s acually easier to advocate for someone else anyway than it is for yourself. She must be feeling very uncomfortable and not eating is not a good thing when she needs all her strength to get through chemo.

Don’t worry about what anyone thinks about you insisting she is drained. If it’s the wrong thing to do, they won’t do it regardless of what you say, but will explain why. But if it’s the right thing to do they should find an appointment for her. It’s not always easy to be assertive and your sister is probably feeling too weak to try.

Trust tomorrow goes well.

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I finished Carbo / Caulyx in November and it made me feel a lot better. I was tired during the treatment and I suffered quite a bit with constipation during treatment, but on the whole it was a much easier journey than the Carbo / Paclitaxel. I hope your sister feels much better soon, and the ascites may go down quickly with treatment, mine did. Thinking of you both xxx

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THanks to all for your replies. Her treatment is to go ahead tomorrow and a drain will be sorted after that.

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Hi Steph, when i was diagnosed I had ascites and while I was in hospital was told that they would drain it,they did not but as soon as I started chemo it it was gone.

As the ladies have said she can ask to have it drain, hopefully her team will see her discomfort and do something about it.

As for the treatment of Carbo/ Caelyx I've just finished 8 rounds with good results, so I hope this combo works as well for her..take care both of you Lorraine xx

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