I'm really sorry to hear the 2nd part of the chemo doesn't seem to have gone so well. It sounds as though you are feeling a bit high and dry and that you could do with a bit of support. Did you manage to talk all this through with the CNS. They can often explain things again and in different ways that might be easier to take in. Another idea would be to chat to the Helpline Nurses at Ovacome. They really are brilliant and very knowledgeable. Do you have their number? It's 0845 371 0554.
xx Annie
I've never claimed to be wise but these are my thoughts.
You may be on Watch and Wait. You say the growth rate is slow at the moment so this may be the case. Even having slight growth can be classed as stable(ish) disease. Were you given the advise to call your CNS if you have symptoms? Some doctors are using this approach to lengthen the time between chemos. You could ask your CNS about your situation. She may be able to enlighten you.
It is true that there have been cuts in funding and treatments have been taken off the drugs lists. And it is true that fewer treatments save money for the NHS.
However, I feel that the decision not to give you treatment will be in your own best interests from your doctor's point of view. Whether the decision is right or wrong, it will enable you to stay away from the hospital.
I find Watch and Wait a scary process but at least you're not in treatment. There a lot of women here who are having treatment upon treatment with no let up, so I would see the May appointment as a good thing.
Hello Jackie. I also have nodules in my lungs. After my first 3 chemo sessions last year my nodules had shrunk. After the next 3 the 'disease remained stable'. I then had another scan in December (last chemo was 4 september). This showed they grew a few mm even the cavitated ones so back on chemo again 13 January. I know watch and wait is difficult but seroiusly try to make the most of your chemo free days. I am glad I did as I am back in the world of extremely tired as opposed to very tired.
Sorry to hear you still have disease after chemo. Have your oncology team discussed any further treatment with you ? It's good to have a break from chemo for a while anyway and my oncologist has suggested that I have a complete break from treatment (I'm on three weekly avastin) and then further scans before starting more chemo. I'm continuing avastin now after 2nd line treatment for recurrence but the tumours are growing slowly now. My oncology doctor seems to tell me everything but I do ask a lot of questions and I have told her that I feel better if I have a lot of information even if it's bad news.
I had chemo last winter for abdominal nodules. There was a mixed response, & the nodules were all still there. I then had a break, then started weekly Taxol at the end of July, which I have recently finished. I had 2 scans during treatment. The first, after 2 months, showed no change. After another 2 months, there was some shrinkage. My latest scan, at the end of treatment, showed shrinkage of 2 nodules, & some growth in 2 more. I have now been advised to have another break from treatment, & have another scan & onc appointment in April. I've been told that most people have a break after a course of chemo if the disease is considered to be stable, & anyway I was tired & felt I could do with a break. I have met other people who also haven't gone straight onto further chemo.
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