I am going to have a rant about my own body, I know it’s emotionally negative but I need to get it out of my system.
My recent scan has shown progression of the disease from my pleura,lungs and bones, to liver,left breast and axilla lymph node. There is also something going on in my uterus, although I am not showing any symptoms apart from increased pain in my back and right side. This could be due to pleura effusions that are increasing since having the Pleurx catheters removed at the end of January.
The scan I had in December following x 2 cycles of Cape showed that I had responded positively to the treatment with no new disease detected, unfortunately I became very ill needing to be hospitilised with Ileitus caused by the Cape. My oncologist prescibed Tamoxifen as the scan was so positive and the recent scan was to see how I had responded to this treatment.
The reason I am so angry is that if I had been able to tolerate the Cape, which had seemed to be effective in holding the disease and improving my out come, I possibly would not be in the position I am now.
I am now scheduled to start weekly Taxol infusions on the 15th of this month to hopefully stop the progression and any symptoms that may occur. I am trying to prepare myself mentally for the treatment but finding it difficult as I feel my body keeps letting me down.
I have never smoked, have tried to live a healthy lifetyle with diet and regular exercise and am not overweight. So I keep asking the question what else could I have done to reduce the risks.
The only conclusion I can come to is it is in my genetic make up, as I have 4 sisters who have been diagnosed and treated for BC. None of us are Brach 1 or 2 so we have signed up to the Guy’s Genome research project to try to identify whether we have a faulty gene. We won’t get any answers if any for 2 years though.
Rant over and feeling a little better. Thankyou for listening. Ann xx
Hello Ann,
Can I join your rant. I too am feeling angry . I have ‘obeyed the rules’ , but cancer came looking for me too
.
Routine mammagram that showed the double whammy in 2013. I cannot come to terms with feeling well and then told treatment is not working. I know I am lucky not to be in pain , but find it shocking to be told of progression. The EE combo has been stopped , so now on Faslodex.
If anyone has any experience of Faslodex I would very much appreciate advice.
I feel like I am whizzing through my options.
Best wishes to all , I know lots of you are in a worse postion , but this Marie is bloody annoyed !
M xxx
Hello Anne,
so sorry you are in the place you are…this disease isnt a kind one( if in fact any of them are!)
one suggestion I can make -is to also ask for a second opinion…my guess is that maybe you are under one of the London hospitals…? Well, if you are under Guys, ask to try a second opinion at Marsden or vice versa…or the Christie…
i understand exactly how difficult we feel, asking for a second opinion…we worry the onc will be upset or offended…but actually, I believe the best oncs welcome this when their patient goes through a difficult patch…
lets face it…just before we see them they even gather all their consultant colleagues in a kind of conference to discuss each patient and see if everyone agrees the best way forward…different hospitals have different trials going on, or different protocols for treatment, so chances are - a second opinion at an alternative centre of excellence might just bring forth an approach that works well for you…
And, remember, this is your life, your body xx
Anne, whatever happens, I wish you the very best results for your treatment…
hugs,
Moijanxx
Feeling more despondent today following a trip to the hospital yesterday. My oncologist had arranged a ultrasound of my left breast and axilla to give her more info. I ended up with additional mammography and biopsies to both areas. I have a small nodual underneath my left breast on top of a rib which, you would not consider breast tissue and enlarged lymph nodes in the axilla. Results won’t be known for 10 days for my oncologist to determine whether my planned treatment is the way to go now. So more uncertaintity over the next 10 days equals more anxiety, which occupies my daily thoughts.
I may discuss getting a second opinion with my oncologist just to explore every avenue open to me. Ann xx
Oh anneemay
how horrible having to wait again for results and decisions …cancer loves stress and its sometimes the hospital waiting around causes it !!
Sending you loads of hugs xxxx
Thank you to everyone for your support and understanding, Barton,I believe Marie123 was asking about Falsodex. Also my oncologist has said that she would not use Cape on me again even on a lower dose because I was so ill on it, possibly due to a lack of an enzyme called dpd which prevents my body metabolising the drug. She said that I was the worst case of ilieitus she has seen in the 12 years that she had prescribed Cape !!! So that avenue is not open to me. Ann xx
A message for Marie…just to say that I have been on Faslodex and found it by far the easiest of my secondary treatments, yes the injections are uncomfortable but not that painful. My lovely nurse makes you lie on your side and injects very slowly so your muscles are relaxed. I’ve also read that it helps to warm the phials as the liquid is quite viscous, you could ask them to do that.
I have been heavily treated with hormonals since 1996 so it didn’t work for me for long, a shame because it had no side effects. Wishing you a long and successful journey with it xx