Reaching out for support

[Jdhoops30]

My mom is about to start her 4th round of Chemo this upcoming Friday. Her last round was in the hospital (like the 1st round) and she had just been diagnosed with C-diff and had a GJ tube put in. Prior to GJ tube mom had a NJ tube for 30 days. She just can’t eat anything other than Chicken broth. It’s awful. I know she wants to eat but just says everything tastes awful and makes her sick. First 2 rounds of chemo she didn’t throw up one time and after this 3rd round she has been nauseous almost the whole time. I feel so bad for her. And now Friday is already time for chemo again. She has chemo every 21 days. So the 3 weeks seem to go quick, however it doesn’t seem like she has very many good days. She sure is a fighter though. I just hope she catches a break. After her 1st round of chemo her CA125 was 17. We hopefully will have another test ran before chemo Friday to see where it’s at now that we are a little over half way. I’m just so new to this whole process and don’t really know what tests should be ran. The oncologist said a CT scan was to be done after 3rd round but that never happened. Not sure what deciphers the need for a scan. Anyway, I feel like I am just rambling on and on. I hope mom is able to eat again. It’s been frustrating for her as she will try different things but everything makes her sick. Any help or advice is appreciated. Sorry this post is all over the place.

[Katmal-UK]

Hi JD . The effects of chemo are cumulative so as the cycles progress so do the side effects. However having said that yr mum does not have to put up with feeling sick all the time. Speak to her nurses and ask for an anti sickness that stops this. I ended up in hospital for a week feeling so sick and with low potassium because I was unable to deal with the nausea. They eventually found an antisickness (cyclyzine) which worked for me. Please ask, your mum doesnt have to suffer . By the way, the fact your mums CA125 is 17 is good :). I wish yr mum well, sending you both a big hug. Kathy xx

[Jdhoops30 in reply to Katmal-UK]

Thank you so much. She has had an issue with low potassium through this whole process. I will for sure ask. I hate to see her so sick. She does have 2 nausea pills to take but they don’t always seem to help.

[Lindaura in reply to Jdhoops30]

I too had an issue with nausea, coupled with ascites that squeezed my tummy so there was no room for food and yes everything tasted awful, including water. But a week in hospital with IV fluids containing vitamins and minerals, potassium and Magnesium infusions, plus unlimited Cyclazine saved me. Cyclazine is relatively harmless, so I take as many as I need all day and before bed.

I try to take a Cyclazine at least 30 minutes before eating anything.

I also take Omeprozole, which helps keep food down, and if I am stil queasy after eating, I take an Ondansetron(Zofran).

Keep trying different foods, creamy mashed potatoes, cream cheese in toast, cheerios!

Keep trying!

Laura

[Jdhoops30 in reply to Lindaura]

Mom had/has the ascites as well and still to this day she talks about what she calls an ‘iron bra’ that squeezes her and she feels like it is suffocating her. That is the majority of any pain she mentions.

I will ask about Cyclazine as many others have also said it helps. And foods, thanks for the suggestions. I will see if any of those will be something that will be tolerable. Thanks for your help.

[Lindaura in reply to Jdhoops30]

Having the ascites to such a degree after all that Chemo is awful.

I wish her docs could change her treatment somehow.

The advises shoukd drain away as the cancer is destroyed...but her markers look good.

Meanwhile, I just thought of something else to drink. Pear or peach nectar. They sell it at Waitrose and Sainsbury's. My daughter would dilute it with water and keep it by my bedside.

It is nutritious and helps get water down.

Bye for now,

Laura

[Jdhoops30 in reply to Lindaura]

Thank you, I will try it.

[SCWI]

I’m so sorry about your Mum’s terrible sickness. I am on Carbo/Caelyx at the moment, had terrible nausea the first round. The second time they gave me an anti sickness pill called Emend for three days and it worked well and I was much better. Her CA125 of 17 is excellent after a first round, good to know what it was at the start maybe? Under 35 is classed as being in the normal range, but the lower the better. You should ask for a scan for your Mum, you often have to push for these things, mention it to her oncologist, phone his/her secretary or call here CNS (clinical Nurse specialist). I do hope her sickness gets sorted out, good luck to you both. Xx

[Biscuitqueen]

I agree with Katmal and SCWI, there is always another anti sickness drug to try and you should ask the nurses for another option of her current one isn't working. Cyclizine works well for my mum. Sending you a big hug. This community has a wealth of knowledge and is a great support. If the onco said a scan must be done then do push for it...I never liked having to pester the onco team but you got to remind them of these things because I think they're so busy they forget etc.

Good luck and God bless x

[Margiedolly]

Dear JD hoops. I'm sorry to hear your mom is suffering so. I remember my husband making pureed chicken soup, as that's all I could tolerate. There is a special antiemetic pill that lasts for 4 days I used to take; my oncologist would give me extras to take once a week between chemos. They are called Emend. They are quite expensive, but he gave them as he had samples. They really helped. Also I was given Ondansetron and Ativan; the Ativan is a benzodiazepine, which has nasty side effects when discontinued.

I am so thrilled to hear her ca125 is at 17!! Mine was down to 350 by that time. That's probably why they didn't do the CT scan, because that score is well within the normal range!

I hope your mom feels better soon. Is she looking hair? I would be happy to send her a beanie if she needs one.

💖Margaret