Ah, bless you. It is a real struggle even when you don't have any other health condition to factor in. I know it only too well having had heart failure after my initial chemo in 2008. Thats why I know so much about the cardio-oncology services! They literally have been my life saver. It's good to hear you are on beta blockers and ramipril, 2 of the drugs I am on to protect my heart. How annoying though that you are not getting your echo done, that wait is way too long for someone whose other health condition is determined by the results. I hope you can get some help soon which will set you mind at rest - and the pain in your pelvic area. Good news though that things are stable.
Thank you nicky for your reply and very good advice. Been off kadcyla ( mixture of chemo and herceptin) since august so on list now for some months. I have been on beta blockers and rampiral heart pills for som time to strengthen heart. Was asked if heart fails would i want to be resusitated i am not sure all this is a nightmare. My breast and lung mets stable for now. The pelvic lesion will i hope be still getting treated. I have been on this road for over two years now and still struggle to understand everything. Thank you for listening and hope all is ok with you at present.
Sorry to hear you are feeling so low right now. Apart from dealing with a secondary diagnosis we are all having to cope with the restrictions that coronavirus has caused.
At the moment oncology services still seem to be running as they should be (or in most parts of the country from what I have seen) so it might be worth trying to get a (telephone) appointment with your oncologist to discuss your pain. There will be some painkillers available I’m almost sure as I have read about all sorts of them and how effective they are over the years of being on this forum. If you have recently had radiotherapy to a specific area of your pelvis I understand the pain gets worse before it gets better. That doesn’t help you immediately I know but if you get the right painkillers hopefully they will help whilst it is bad. As to your heart scan you should request one, they are still being done even if it’s a long wait, you will at least be in the queue. I’m assuming you can’t have Herceptin at the moment (from your comment about not being on treatment due to a low heart function)? Although you can’t have this there will be other treatments still available to you so I would also discuss that with your oncologist if you are worried that you are not having anything at the moment. Also heart function does generally improve the longer you are off Herceptin so I would think it possible to go back onto it if you find out your heart function has improved. Finally, when ever this is possible (and who knows when restrictions get lifted) there are cardio-oncology services available , in the nhs, where heart medications are used to strengthen and support the heart should you need extra help with it whilst on medications like Herceptin. The main centre is in London but I understand other areas such as Leeds may have a centre as well. A referral to them could help you but I have no idea when or how they are operating at present.
Take care and also use the advise you’ve been given on the other post about trying to cope, it’s not easy but you may find some support online via videos etc.
this is a horrible time for us all secondaries plus the worry of coronavirus. I have secondaries in lung base of spine and both sides of pelvis diagnosed feb2018. Had acute pain in dec/jan in top of hip and back had oramorph codeine which played havoc with my digestion/bowels. finally got relief from heat patches naproxen hot baths rest and a bit of physio (which has stopped due to virus), Physio recommended spiky massage balls med size i got pk of 3 on Amazon. Just a few ideas that might help also sending you love and hugs tomorrow is another day and hopefully a better one. Also what about a meditation/relaxation lots on you tube my daughter keeps me up to date in what to try. Liz
Hi to all, my situation had good shrinkage last year on breast and lung mets. But due low heart function so was taken off treatment. Not had any more treatment since august. I am stiil stable in that area. I am unable to get heart scan due to long waiting list. Also now the corona virus. I had a,sore pelvis a,few weeks back which is a lesion. Had one radiology treatmeant but i am still in pain on strong painkillers. I am so ashamed and depressed all i think is that i am going die and there is no treatments for me..very sorry i am in tbe worst place possible today. Need positive this negative stuff is mentally killing me..