Hot flushes and trouble sleeping

I've been to the Dr's today about my lack of sleep and these god awful hot flushes. They're driving me up the wall. They're happening at all times of the day and they are so unpleasant. Anyway, I've now got some sleeping tablets and something to help with the hot flushes. I'm lucky if I get 2 hours sleep in one session. I'm so tired the next day.

Also my left arm has been giving me tremendous pains. I'm sure it is connected to the port they placed in my arm in July. I wonder if they have damaged some tendons. The Dr has suggested physio and has prescribed some stronger pain relief.

Bit of a kick in the teeth!

Had my usual clinic appointment today at the Berkshire Cancer Clinic before having my chemo and pamidronate. Discussed Dr Draczynski's recommendations with my Oncologist and gave her a copy. She didn't appear to be at all happy and went off on one when I said that Germany were stressing how important it was to carry out tumour marker tests. The Onc responded by saying that they don't do them routinely here because they prefer to use clinical signs for any changes such as scans and patient comments. (Oh yeah right, like I did in Oct 2004 when I saw the Onc and said that my back was hurting and I could hardly walk. She didn't suggest any urgent tests and just said see you in a year's time!! 3 months later the MRI scan found the cancer!!)

She then went on to say that we have to remember who is administering my treatment and that she has been very accepting and accommodating of Germany's advice as much as possible even though she may not agree with some of it. She went on to say that we may get to a point when she won't agree and will say no. As usual her manner was very brusque and I felt really upset.

To add to this, we discussed changing over to Bondronat and the Onc then dropped the bombshell that it isn't quite that straightforward. I can only have Bondronat if my GP will prescribe it as it is not available on the NHS. What!! I couldn't believe this, the first time it was mentioned that I would have to stop the Pamidronate was 13/10/06, not once did they mention that my GP would have to fund the Bondronat. If they don't fund it, I have to have a less effective drug call Clodronate which is funded by the NHS. Are they now putting my health at risk because they want to save some money? I have since spoken to someone who has been on Pamidronate for 3 years without any complications so why can't I continue?

Bloody hospital budgets, they make you sick (literally!!!)

Tumour Marker results

The District Nurse found a copy of my last tumour marker test results from 23/10/06 and has given me a copy. As I'm having the usual routine blood test today, I've also marked the blood form with a request for further tumour marker tests. I'll be able to compare the two results and then follow Dr Draczynski's advice.

Reply from the Leonardis

Dr Draczynski has replied to my email as follows:

- Bondronat is ok!
- Right before any chemocycle it is essential to check your tumor markers (CEA, CA15-3, TPA).
Should tumor markers consistently decline please continue with Navelbine at 40 mg every 3 weeks.
- If there's a slowing down or stagnation of tumor markers, please increase Navelbine to 50 mg for the next cycle and then see if the tumormarker would respond to this (e.g. decline)
- If there is or has been (!) a rise in tumor marker, the treatment strategy needs to be changed.
- A total of 6 cycles of Navelbine is alright provided tumormarkers continue to fall.
- Restaging after cycle # 6 is ok - again if tumor markers will continue to decline!

At my next blood count test (19/12/06) I'm going to ask for a check of my tumour markers, CEA and CA15-3. I don't think there is a TPA test carried out in this country. I'm sure I had a tumour marker test carried out a few months ago before I started chemo. so I need to contact my GP and see if she can find out the results. This will give me an idea of the level my tumour markers were at before I started the chemo.

Navelbine side effects

The side effects from the Navelbine are mild and tend to kick in on day 2/3 after treatment. The worst of it lasting about 4 days. Unfortunately it does make me very tired and irritable and I have to have a sleep every afternoon which I find a pain because I could be getting on with other things in the two hours I need to rest. I've also been getting aches and pains in my left arm and I am beginning to realise that it must be the port that was put in my arm in the summer that is causing this pain. It can be so uncomfortable at times that I need to take pain relief just to get to sleep. I'm sure there is nothing they can do about it other than taking it out!