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Caelyx Round 1

Nov 14, 2010 - 0 comments

I have had a bad reaction to this chemo. The side effects I have had were not really explained to me and when I re-read the leaflet they are under the "less common" ones.

Day 1 (Thurs): Chemo

Day 2 (Fri): Feel well and fit. Slight heartburn. Take Gaviscon.

Day 3 (Sat): Ok, a little tired. Heartburn - gaviscon.

Day 4 (Sun) Tired. Heartburn.

Day 5 (Mon) Fatigue and nausea. Began taking anti-sickness meds (Donperidone) The nausea increases as the day progresses. It is debilitating and I spend a large part of the day in bed. I am uncomfortable and don't know what to do with myself. Didn't go to work. No appetite & only ate small amounts. Really uncomfortable, can't settle to anything. Only comfortable when lying down.

Day 6 (Tues) Nausea much worse. Drink a cup of tea and vomitted inthe loo. It was just yellowy/orangey liquid. The retching was a bit un-controllable as there was no food to bring up. Phoned chemo clinic up & nurse told me to swap my anti-sickness meds to Metroclopamide. GP did prescription. Took the tablets. No change. Nausea present all the time. Very uncomfortable. Sporadic episodes of diarrohea too & sometimes mucus diarrohea only.

Day 7 (Wed): Dad comes to paper the office. Still very nauseous but trying to ignore it. Stay in bed. Lying down is the only time I feel OK. Eating anti-sick meds but there seems little change in my nausea. Hardlying eating onlt small amounts. Boiled egg is the only thing I fancy.

Day 8 (Thurs) Can't stand it anymore. Phone chemo clinic again. They prescribe stronger anti-sick meds (Ondansetron & Cyclizine) The first one blocks the sicky message between the stomach and the brain so the brain doesn't register you feel sick. The second one is an anti-histamine. They begin to work very quickly & I get blessed relief. I am still a little agitated and uncomfortable but the sickness has diminished alot. Just before I get in bed saliva goes down my wind pipe and I have a severe choking fit. I have to force myself to breathe through it. I end up wantingto vomit but I take deep breaths and eventually calm down.

Day 9 (Fri) Sicky tablets are working :) Go to counselling & feeling much better. Only eating small amounts as I soon feel full. Beginning to get a pain just after swallowing both food and drink. As the day progresses it gets worse. Its like my food pipe is sore or bruised. Heartburn. Very hard to eat as it takes me that long my food is cold.Each mouthful is painful.

Day 10 (Sat) Unable to swallow anything without pain.Hard to describe the pain - like bruising, soreness, burning. A stabbing pain just under the sternum and mostly radiating across my back. The pain increases throughout the day. Can't eat cos of it. Pain only appears after swallowing and will last afterwards. Phone chemo nurse (Geoffrey) again who advises me to take gaviscon. (By now the taste of gaviscon make me feel sick as I am associating it with my nausea earlier in the week) I go to Boots and get some Zantac as this prevents acid heartburn. I phone back in a hour & said it hasn't touched it. I am advised to take 2 Tramadol and phone back in an hour. Am told if that doesn't work they will get me in and do blood test & a scan. The Tramadol do not work so I phone back. A different nurse (Sarah) explains that my symptoms are not severe enough to warrant an emergency admission. She advises me to go to A & E or the on-call doctor. By now I am at the end of my tether and breakdown. I feel I have been given the run around and am so tired of the battle. Anyway, I eventually get to see an "out of hours" doctor at 10.30pm on a Saturday night at Byron House. He examines my abdomen and can find nothing abnormal. He diagnoses Acid Reflux & gives me (yet some more tablets!!!!!!!!)  Lansoprazole which are Proton pump inhibitors to reduce the acid in my tummy.

Day 11 (Sun): Mananged to eat porridge with much reduced pain. It was slighty uncomfortable so I am guessing I am on the right medication.

Chemotherapy Tracker

CA 125 tracker

Nov 06, 2010 - 0 comments

18.10.10
Ca 125 - 1,280. Was told I need to go on Caelyx

Chemotherapy Tracker

Second line chemotherapy

Nov 05, 2010 - 1 comments

Background

I was diagnosed a year ago with an incurable cancer called Primary Periotneal Cancer. It is a collection of small cancer cells spread across the outer lining of the peritoneum (Stomach) This lining or sack covers all of the major organs like liver, bowel, stomach, kidney, pancreas etc. The cancer cannot be removed sugically because is it spread over a wide area like a "splatter or seeding" effect so it can only be kept at bay by regular chemotherapy.

I didn't realise I had cancer until it had progress to stage 4. You see the cancer cells "weep" fluid and your abdomen begins to fill with fluid called ascites. I thought I was putting on weight so kind of ignored it. My tummy was hard and I looked pregnant. But I still didn't cotton on there was anything wrong. Then as it was pressing on my diaphram at the top of the peritoneum the cancer cells and the fluid decided to go and settle around my lungs (in between the plueral linings) The fluid stopped me breathing so I had to act then and went to the hospital as I thought I had pneumonia................... oh no, they drained off the fluid and found the cancer cells and told me I had cancer "somewhere, but we don't know where. Probably in your tummy area because it is not in the lungs or breast"

I had a week wondering where my cancer was and when I was finally told I had never heard of it. I was told it is very simiar to Ovarian Cancer and it is treated in the same way. Only they can't surgically remove it because there are no tumours - only soft tissue cysts that are malignant. So my only option is chemotherapy.

December 2009

I began on the "gold standard" chemotherapy called Carboplatin & Taxol. My tumour maker, CA 125 was1,119 which was very high. I had 6 rounds of the chemo and finished in March 2010. My CA 125 had gone down to 34 which was just inside the normal range and I was so pleased. I lost my hair but - hey ho it grew back. I was kind of enjoying life with my cancer dormant. I was regaining my life back and managed to go back to work.

August 2010

A check up. My CA 125 has risen to 71 which is concerning my doctor. I had to have a scan and go back in October for another blood test. I start to worry which is not good for my depression. (Did I mention I have depression & was on anti-depressants?)

October 2010

The check up I had been dreading. My scan is good, it shows no change. All major organs, lymph nodes and bones are clear. No fluid around my lungs. Very little change in the cancer cells themselves BUT my CA 125 has risen to 1,280!!!!!!!!!!!!!!!! I stopped listening after that!!!!!!!!!!!!! I think I heard her use the words "aggressive" (my oncologist) and she wanted to get me straight back on to chemo. They would be giving me a different chemo because it has come back so soon.

November 2010

The news that my numbers had risen so sharply must've caused me such axiety and panic that my mental state couldn't handle. I returned to my doctors who incresed my anti-depressant meds. I was panick stricken, crying all the time until they kicked in. And then something strange happened. I stopped feeling anxious and instead began to have really really bad digestion problems. Really bad bloating, gas, diarrhoea. I therefore convinced myself that my cancer was in my gut or bowel. It became a viscious cycle and the more I worried the worse my bowel was. As I was waiting to start my chemo my tummy was in agony and I was using the toilet about 8 times a day - it was awful.

5.11.10

Had my first Caelyx (doxil) yesterday and it was a pure breeze compared to carbo/taxol regime. It only lasted 90 minutes as opposed to 6 hours which in itself seemed far to short - but was good. Because the nurses here said it can cause total hair loss (brand name for the Caelyx is (liposomal doxorubicin) So I used the cold cap during the infusion. Boy was it cold!!!! It was so cold it gave me the most painful head ache I have ever had!!!!! but I persevered and got used to it. However by the time it was beginning to thaw they made me take it off and replace it with another frozen one again. Bring on the pain.......... But if it keep the hair on my hair that I have been patiently nursing these last 7 months it will be worth it.

All in all I am feeling really reaaly good. All of my weird and strange bowel problems with the bloating, gas and diarrhoea has completely vanished and I now know it was IBS triggered off by anxiety and tension waiting to go back on chemo.

You see I was terrified of going back on chemo - always scared of having a reccurance so quickly after chemo had finished and when I found out my numbers had gone up I was petrified and thought my time was almost up. I am on anti-depressants so I was not really feeling the anxiety in my mind so it was going to my stomach (my weakest part of my body) and giving me anxiety in the form of terrible IBS. However the morning I went back on chemo it all just stopped? I had this lightness about me a feeling like a weight had been lifted from my shoulders - I was being looked after and I felt safe. As long as I was going to the hospital and receiving chemo I was SAFE. I know it is not a guarentee cos cancer can still grow sometimes on chemo - but it is a pretty safe bet.

So I am feeling so well - both mentally and physically. So far I have had no side effect (day 2) and I am feeling calm and at peace.

Now how many cancer patients can say they are glad to be back on chemo?