Hi there sisters. I'm afraid this is going to be a long and boring post but I hope you can get to the end for me please.
I'm usually a half full kinda girl with a good sense of humour but this week has been really difficult. Had the onset of a lot of pain in pelvis and lower back, plus a new lymph swelling under my arm, which I noticed last weekend. The pain subsided briefly when I spent a penny. Last Tuesday the on duty oncologist at chemo suggested it was a bladder infection and the lymph was just reacting to it. I started to drink cranberry juice until I turned dark red and almost caused a tsunami when I peed - every 20 minutes - day and night!! A visit to the local doctor Friday night sort of confirmed this. Sent my pee off for analysis. However, today the pee test confirmed that there was no infection in my bladder at all. At least the manufacturers of cranberry juice can cease production for a while. There's no indication in my blood that I have an infection anywhere.
The pain is caused by the avastin, according to today's on duty oncologist. It attacks weak muscles and as I already have a weak lower back caused by my partial hysterectomy many years ago, and because avastin has an accumulative effect, it's why the pain is in those regions has manifested itself so far along the road. She has given me some antihistamine for a month to help offset the side effects. Then she hit me with the CA125 result which last week's onc ordered for me as he could see I was anxious. It was 132.5.
Here's the rub and the nice lady onc couldn't hide her disappointment from me to be honest.
I had my first and last Taxol (with carbo/avastin) on 22nd August. First and last Taxotere (again with c and a) 3 weeks later and started weekly carbo/avastin on its own 3 weeks after that. My original CA was 385 - quite low for a stage 4B I have noticed by reading some of the posts here. 8 weeks after 22nd August I had a PET and CA125 was down by over half to 152. My onc and I were delighted and all tumours had reduced by half with no new sites.
Today's CA comes after 5 weeks of chemo and is a reduction of just 19.5. I know it's going down but I've only 3 more weeks on chemo so I'm never going to get under 35 (that's the max in the safe zone here in France - don't know if it's the same in UK). When I finish chemo I'll still be well over 100 and not in a good position to go into any sort of remission. My biggest worry is that once the carbo stops the cells will just go into overdrive and all these weeks would have been for nothing. Also, there hasn't been any "lymph reaction to bladder infection". It's a new site as far as I'm concerned. Added to that, my blood count continues to fall so today they reduced the amount of carbo I had. So that’s another 3 weeks of reduced carbo if it doesn’t pick up next week.
I've had a really crapola week. Lots of sad news, pain, diet change to try to lower potassium in blood - which didn't flipping work so I'm ditching it and returning to my iron rich diet - some pond dweller has been sending me nasty emails which I'm saving for the gendarmes in case I take it to litigation - and now this.
Next week my own oncologist is on chemo duty so I can have a quick chat as he has to get around to everyone in a short time before he starts his main job. My next PET is January followed a couple of days later by an appointment to see him properly and see where I'm at then. I don't expect to hear good news. Do you girls think he'll decide not to keep me on avastin? It's starting to get to me a bit and my sons will call tonight and I'm struggling to keep the emotion out of my voice. My Cancer Support Counsellor will be phoning in 15 mins so I can offload a bit to her beforehand. I guess I just need some reassurance from you girls if you've experienced anything like. I would really appreciate it. Failing that, a bloody good joke would certainly hit the spot right now. Sorry I've gone on and on - but as some of you know, it is the norm for me!!
Love and big hugs to all of you.