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…
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 biker
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.
Nicky x