Likely ovarian. Terrified. Anyone available for a hand hold?

[Ohjoyohbliss]

Blood test yesterday: Serum CA 125 level over 35 indicates possible cancer. Mine is 213. Shit.

DH knows and one friend but I don't want to worry anyone else until I know how bad it is; hence I've name changed for this post. I'd love to know how anyone else has coped / is coping.

CT scan Saturday and USS on Monday. GP has made 2ww gynae referral today.

Back in the sickness vicious circle. Sick last night, brought back everything I'd eaten in the evening. Sick first thing this morning so struggling to eat breakfast.

@Ohjoyohbliss are you on doxorubicin? If you can, please ask for olanzapine. It’s a broad spectrum heavy duty anti sickness tablet. You take it at night.

Please don’t suffer with this awful sickness. What have they given you? Metoclopramide? Cyclizine?

My chemo (forgive misspellings) is Rituximab, Polotusimab, Doxorubicin and Cyclophosphamide. Also steroids and Piriton syringe before the chemo, Tinzaparin,and loads of other pills - Lansoprazole, Morphine, Lansoprazole, Dapsone, Allopurinol, Acyclovir, Isavuconazole, most of which are to alleviate the bad side effects of the chemo.

Anti sickness pills are Cyclizine and Ondanzatron and I had an IV syringe of Metoclopramide last night. I will ask about Olanzapine. I think there was something they wanted to give which could cause heart problems in combination with other meds but that may have been an antifungal.

There was another broad spectrum anti sickness they gave me for two days, it was a tiny pill and they cut it into quarters, but it gave me violent diarrhoea and the second dose also seemed to make me sick so that was discontinued.

You are on quite a cocktail of drugs.
Ondansetron is usually quite effective.

Definitely mention the sickness to your team, you need to be able to eat and regain strength.

Yes indeed. I prefer my usual cocktails, Mai Tai, Sex on the beach, Long Island Iced Tea etc. No alcohol for months. Not worth the risk.

One day you will be back on the real cocktails, hold on to that! In the meantime, try and get that sickness control if possible. Can you tolerate any foods at all?

The steroids are boosting my appetite and I ate quite a lot last night but it all came back later. I've had a bit of chicken chasseur and a bit of Bakewell tart and custard for dinner. Will try to down a protein drink this afternoon.

Yes I’m on the steroids this weekend too. Last night at 1.40pm, I was craving pickled onion flavour Monster munch and corned beef ( I don’t eat red meat!) Crazy!

Anyway, I have everything crossed for you, that food becomes easier to manage. I totally understand how debilitating chemo sickness can be.

How’s it going @Ohjoyohbliss?

Sick yesterday tea time. Sick at bed time. Sick this morning.

Feeling weak and shaky. I've asked to be weighed but they haven't done. They want me to drink the Fresubin Energy but they keep not ordering the blackcurrant which I find most palatable. Dietician was supposed to order it Friday, nurse was supposed to order it yesterday, Ive asked doc, nurse and HCA today but still no idea whether it's ordered.

I ordered red lentil soup for lunch. Good for protein. They didn't bring me soup, said it wasn't ordered. So now they have made me a shitty cup-a-soup with hardly any nutrients.

@Ohjoyohbliss oh no! This is awful. What about asking for a syringe driver to be fitted, just while you are going through this horrid sickness? It will deliver a steady flow of anti sickness and no tablets to swallow.

I hope you get your drink quickly.

Communication again! So frustrating.
I hope the nausea in improving.

Urghh.. that’s not good.
Are you in hospital or at home?

Honestly @Ohjoyohbliss it sounds so awful for you.
Basic communication severely lacking.
Is your DH able to bring you any decent food/soup in a hot flask?

I'm in hospital. DH offers to bring stuff but I don't really know what I want.

I had some IV antibiotics sickness this morning which seems to have helped.

See if you can have that syringe driver. When I was vomiting every 20 mins, I begged the nurses to make it stop. They rang acute oncology and got the SD immediately. It’s pre loaded with meds and gently works its way through your body. It stopped my sickness within half a hour. Can you manage to suck a sweet? Queasy drops from Amazon are good. Sipping flat lemonade? Dry crackers?

I had dry crackers last night but they came back.

Where does the syringe driver sit? A week or two back they were talking about something that goes directly into the abdomen, but i don't know what that was called.

The syringe driver sits under the skin of the abdomen. Insertion is painless and is battery operated, lasting approximately 24 hours.

The only down side is that you have to carry it around with you to the loo etc. But what it does do, is stop the continuous vomiting cycle. It allowed me to eat without fear of vomiting.

I don’t know if this is an option for you, but maybe worth asking?

I had a rig feeder directly into my stomach @Ohjoyohbliss - they expect the radiotherapy to close my throat hence fitting one prior to treatment starting. I'm only 3 days in so whilst I am not using it I do flush it twice a day with water. It's uncomfortable but preferable to a tube down the throat (my discomfort could also be caused as it was fitted as I started fertility preservation so the tube plus bloating was harsh)
It doesn't matter what flavour of the fresbian they use as you can't taste it.
My main question before agreeing in your situation would be, other than not tasting the food, would something going directly to your stomach be any different to you eating it in terms of being sick?

Just to say thinking of Joy, and Enigma54 and Forest Flower Fairy and all the rest of you in these impossibly horrible situations. Sending love and wishing for miracles.

@ForestFlowerFairy fertility preservation at the same time as treatment sounds so difficult - DH had to freeze sperm but (no offence men out there) it’s a whole different story for women.

It doesn't help matters that most of the food is disgusting so I don't fancy anything.

I hear you. My hospital couldn’t decipher between minestrone soup
and ratatouille. In the end, I was presented with crackers and cheese!

I’ve always wondered if those protein drinks wouldn’t be better served as ice cream as the texture/thickness seems to be a problem. Sorry the hospital food isn’t as appetising as it could be, it’s always been a problem that should be easily resolvable but I suppose they are catering for lots of different tastes and on a limited budget.

I used to work in a hospital and the food there was decent. Very frustrating that the only time I was an inpatient there, I was nil by mouth.

I imagine that the budget is the main consideration.

Today's farce is that the woman came to take food orders, didn't fancy any of the lunch options so she suggested sandwiches so a couple of us ordered those. Then she came back later saying we're not allowed sandwiches on our ward because of the infection risk as we're all immunocompromised. So we may or may not be getting lunch.