Hi, I'm new to this type of blogging but I have a lot of questions to ask. Firstly I wold like to know if anyone is having targetted treatment - oral chemo. The name if the oral chemo we are using at the moment is Afinitor. It's not on the PBS yet. I have been taking it for 6 weeks now and have had nearly all the side effects mentioned. Currently I have been told to stop taking tablet because of side effects, coughing, tiredness, shortness of breath. Had bloodwork,ecg and xray of lungs which showed no infection. My onc has since been in touch and advised that he would like a high resolution ct scan done of lungs - looking for minute changes to lungs. Having it done tomorrow-Friday and see onc that afternoon for results. Not sure what's going to happen next. I'm still trying to work fulltime but have had the past week off because of the debilitating side effects and decided that I, or I should say my health comes first. Looking forward to hearing from anyone taking oral chemo and their story.

Hi Beery, I haven't had any experience with Affinitor, though I believe it will soon be on the PBS and have heard about the symptoms you describe. I am surprised nobody else has picked up on your post. You might like to try on the Aussie breast cancer forum as well. I also have bone mets, but my treatment so far has included Taxotere, Herceptin, Denosumab and Tamoxifen. People are so different in their needs and response to treatment, but I know there are other ABC women on the same regime as you. I hope your scan and oncologist appointment went well, in that you know what moves to make next. Let us know what happens. Best wishes.... Pam

Hi Pam, Yes I'm as surprised as you are in not getting any more responses. Thanks for replying anyway. So how invasive are your bone mets? After discovery and fusion of L3 we had had a lot of trouble finding an agreeable hormone. Tried aromasin then tamoxifen and now exemestane. Zometa started 4 months ago with decreasing side effects. The afinitor (10mg) has been the main problem. I'm now in hospital with what looks like side effects from it. Once everything is sorted and back on track will go back on 5mg of afinitor. The worst part was the breathlessness and inability to do anything. Couldn't walk more than 50 metres without huffing and puffing. Oncologist admitted me to hospital as he was very concerned, for which i am thankful. My bone mets began in L3 which we thought was where it was contained. But over the 3 mth interval from ct bne scan previously mets progressed to T12,T11,T9,T8,and C5 with spot n ribs posteriorly in T9 and T8. So it was very disconcerting to hear the results. Having obs done so will check out till later, Sue

Discharged from hospital yesterday. Still very tired. Drs have me on prednisione, antiobiotics and taken me off the Afinitor for the time being. My electrolytes were very low, especially potassium and phosphates and of course the wcc were very low. So was given an iv drip of potassium and effervessent phosphate tablets 4 times a day. Once the potassium was completed, fluids were given. I might have to rethink about working full time, as I'm taking too much time off work at the moment. Now that I have a little time on my hands, will checkout the Aussie website you have recommended while laying about recouperating

Beery | BCNA Online Network

19 Replies

Beery
Member
12 years ago
Hi Desi, Seen lung specialist yesterday regarding the pneumonitis. I had a spirometry test and the dr seemed pleased with the results. My o2 /co2 transfer which occurs within your lungs is at 66%. Not the best result as he would have liked to have seen it at around 80-85%. This episode will apparently leave some scaring which means that mucos will accumulate and cause more coughing when infected. Otherwise everything else is excellent. Next appt is with my onc before zometa treatment to check bloods and again a fortnight later. Should get results from ct and bone scan then. Where do you live? Lismore is on the north coast of NSW, I live on the mid north coast in a sleepy little village called Stuarts Point. I travel to Coffs Harbour for treatment/onc appointments which is about 100 klm north from where I live. A lot of roadworks happening at the moment which makes travelling tiresome. Catch you soon Sue:-)
Desi
Member
12 years ago
Hi Sue I am not familiar with the areas, is that out Lismore way? I want to go to Forster for the weekend. It is alot of discomfort when they drain the fluid,lol you can actually feel the tube going in. Drained 2 litres of fluid, will speak to the onco this week about why It came back so quick. I did a abdominal and Chest X-ray a month ago and they saw some more tumours in the liver, and some cancer on the lining of he lungs which they said was small. It is very scary but I try and get on with life. There are times where I just curl up in bed not wanting to do anything. I have to start exercising again, that might help as well. The 5mg will proberley be much better. I am on 10mg and have nose bleeds and discomfort in my mouth. I am having the same problem with facial hair. When is your next scans, I am sure it will be fine fingers crossed. Chat later Sue :-)

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Beery

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