Went for ultrasound Monday to see if ascites could be drained.
Not enough to warrant drain apparently the swelling is down to disease and any attempt to drain the small amount that is there could cause more problems.
Due to start new Chemo tomorrow (Caelyx).
Different hospital, different treatment more symptoms and feeling generally ill. Had no real symptoms of disease before and felt stronger to go for chemo.
Hope chemo is the right choice, got to give it a try. Bloods later today. If okay guess it's onwards and hopefully upwards.
Hope everyone is keeping as well as possible.
Janet
Meant to mention real problems with cannula so even more concerned. Mentioned to consultant who says let's see how it goes.
Hi Janet. I’m sorry you feel so uncomfortable! Hopefully the new chemo will shrink the cancer and you’ll feel better. Can you get a port put in? Having problems with your veins just adds another level of pain and frustration! Wishing you the best tomorrow! 🌸🌷🌻
I have a nightmare with my veins. They are small and they are deep.
Nurses and phlebotomy always have trouble finding them... in the past it has taken, 3,4, 5 attempts to cannulate. It's stressful and it's painful. BUT what i do now is, make sure i drink plenty water the day before, and also plenty water the morning before being cannulated... i know i have to keeping weeing, but its worth it.
I then use a squishy stress ball a good half hour before cannulation.. keep squishing it in my hand... then, the important thing for me is to put a heat pad on my arm for about 15 minutes.... i allow it to get really hot to the point where my arm is red when the nurse takes it off - but be careful not to have it too hot for too long.. on one occasion i got a small blister - my own fault, i was determined to get those veins up! But It all seems to help and more often than not the nurses manage to cannulate first time.
I tried a PICC line into my upper arm but it gave me real trouble, i seemed to have an allergic reaction to it. It was only in my arm for three days... it got more and more itchy and was unbearable. I had to get it taken out. I realise now that it may have been the small Chlorhexidine pad that is put on the line and sits against your skin, to help stop any infections.
I was due to have a port fitted but at the time the procedure to fit it was due, my bloods were too low, so i didn't end up having it fitted in the end because i was already at the last chemo infusion and i wanted to see if my veins could cope with the smaller cannular for my avastin infusions. Certainly if in the future I have to have chemo again, I will definitely get port fitted. All the lovely ladies I spoken to that who have had a port fitted say its the best thing and they so glad they had it fitted.
I feel the same, just totally unwell and nauseous all the time and my digestion is a nightmare.
I am hopefully starting Chemo tomorrow.
I am desperate, as there has been a two month delay because of Covid, during which my symptoms just got worse.
All I can offer is my best wishes to you and good luck to both of us!
Oh just one mor thing. The cancer seems to wreck havoc on our veins.
I now have a Portocath, called a Port, which makes infusions so much easier. This is my second one. In a fit of optimism, I had the first one removed, but now that I realise I am always going to be in treatment, I am keeping this one.
A specialist has to insert it and you MUST, and I stress MUST, have some sort of sedation. Local anaesthetic is not enough!
My first was done without, and it was awful. This last one is from the Royal Marsden under sedation and it was so much less traumatic.
Hi Laura - Did your chemo get delayed by a week as I was thinking of you on the 15th? Sorry to hear that you are feeling unwell all of the time - it is hard to explain to people without OC - no I am not in what you would call pain - just aches and pains that come and go in different places and just generally ughhhh, but they think that doesn't sound too bad but day after day it gets debilitating. Still we battle on and still try to appreciate every precious day.
Yes, my chemo was delayed because as soon as I stepped through the door, they took my temp and it was 38!
They thought I might still have Covid and hustled me off for a battery if blood tests and swabs and sent me home without treatment.
Turns out, I tested negative and all my infection markers were down, but I have been struggling all week with slight fevers and in fact have not felt well (beside the cancer) all week.
I am determined to have that chemo today and just took some paracetamol. My appointment is at noon, so I will take another dose at eleven and bring a thermometer in the car.
Just another annoyance to go with so much we suffer through with this god awful disease.
Agree with Laura - ask for a Port (under sedation though as Laura suggests). If you have a PowerPort they can also be used for the contrast used in a CT-scan. You might find though that first of all you need to have it accessed before having a CT-scan as the CT nurses are often not trained in accessing Ports.
Despite the extraordinary pain having it inserted under local anaesthetic it's been brilliant. I'd do it again without a doubt.
They might not have the staff or the operating room space. It would be worth asking if that’s the case and if it would be done in the future.
Hi Janet. If you think you'll have a regular maintenance drug infusion to follow chemo, then it's well worth having a port. Mine's been in operation for many years non-stop and it's been a god-send. I had a PICC line prior to the port but they need regular cleaning & lots more besides but ports are so much easier. Mine needed 10 days after insertion to recover & settle down before it was used but I've read on here their being used in a lot less time than that.
I don't know what they injected into me for the little op but it made me not care. I wasn't high, I simply didn't care. Mine is in my arm, which I'm pleased about as it's tucked away out of sight and I can wear whatever I want, but I think most are in the chest area. You probably won't have a choice. An OC friend had hers in the chest, but it was put too much into the breast tissue. It moved too much for successful infusions. It had to be taken out & re-done.
I've found (and others have told me the same) that nurses other than chemo nurses, won't use your port for fear of damaging it, or putting too much pressure through it, so for scans etc, it won't change. The same friend mentioned above, has no usable veins left and so they use her feet! She gets very annoyed that they won't use the port.
I know you said your onc doesn't seem interested. He may be right if it's just 6 straight infusions. But if you decide it's worth having, then perhaps you can find a way to make it happen.
BTW I had 6 months of carbo/caelyx. I found caelyx to be a difficult but very predictable and effective drug. Good luck with it all. Best wishes. Pauline.
in reply to
Hi Pauline
Thanks for reply. Don't think there is any maintenance drug after this cos two I have had did not work.
This is a fourth line of chemo after three lines of carboplatin.
Feeling tired and nauseous to start so dreading this.
It must be the time of year. I received results of my CT which shows a small progression of new disease to my small bowel mesentery. Looks like chemo again! Had carbo/taxol and carbo/gem so carbo/Caelyx presuming my heart is ok. May just be carbo if my cardiologist is unhappy about the Caelyx.
Added to which my haemoglobin is low again so need transfusion. Seventh time since started the ICON9 trial last June.
Need Covid test before I can be admitted to the ward. Generally feeling rubbish at the moment. Tired, bloated, no appetite, insomnia, cramps. Shielding. Hey ho! The sun’s shining!
Definitely go for the port. It’s worth it. Recently took eight attempts to take blood from my arms ( had a mastectomy so only one arm available) as for some reason the port not working. Easy using port this time. Had mine since 2017.
All the best with the chemo and let’s hope we feel more comfortable.
Hi Janet, Can I join the club of feeling generally unwell and fed up about it? I too get bloated but I think mine is water retention as I hardly go to the loo in the day then have to go several times in the night and hey presto my abdomen has gone down compared to the early evening.
My veins also gave up and I have a PICC line which I am happy with. I don't mind having it maintained weekly as I go to a small Covid free hospital and it gets me out of the house but it sounds like you need that or a Port - it does make life easier and they do use my PICC for blood and contrast.
Had a CT scan on Monday and again enjoyed my ride out to another Covid free community hospital - I hadn't been so far in weeks, but am not looking forward to the results as my CA125 is rising despite 2 weeks out of 3 Taxol and I think this is my last roll of the Chemo dice.
I really hope things go better for you and we continue to make the most of every precious day (especially in this sunshine even though we are staying at home). Best Wishes Jenny xx
Oh no! Having ascites is just so uncomfortable. Especially when they cannot relieve it. I'm so sorry. I am truly hoping for the best with that chemo. Bless your heart, it takes a strong spirit to keep pumping that stuff into your system knowing the side effects are kind of yucky. But here's hoping for the best outcome.
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clothes for ascites!! 
Ascitic Drain 
