Hi everyone been looking through all the various threads and it seems so many of us are just so damn fed up with this disease and all that goes with it.
I had my one off blast of radiotherapy last Monday for my bone mets and I would say one week one I am feeling pretty much worse than I have ever done. Had diarrohea through the ct scan iodine and also sickness, which I dont know is through the morphine,the iodine, the rads or the disease and my pain is so much worse,but I was told this could happen after the rads but it doesnt make it any easier to deal with knowing its ‘normal’.
Had phone call from MacMillan OT this morning, they will be discussing my needs this week and she had phoned to discuss a stair lift. ggrrrr and ahhh and yak, yes I am heaps of pain getting upstairs but I was hoping after some rads and mornal treatment the pain may increase and I might not need one, I didnt want to hear the words at all that I will at some stage be needing a stair lift.
Also had my ct scan last Friday which is very easy to have but that iodine yak, diarrhea and sickness all weekend and still not resolving. I am due to get my ct results next Wednesday to see if the secondaries have gone anywhere other than my spine and again I dont want to hear that they have. It would be so much better if we could go into a room and get all the news over and done with in one go instead of tests and trials for this that and the other. I am so tired and yes this is ‘normal’ too after rads, Hells bells I wish I wasnt so normal.
Guess I am on a downer and need a kick up the butt, hope your week is starting better than mine
Hi Ann, Just found your thread and I’m so sorry to see that you are feeling so blue. I really know how you feel, it’s so demoralising, this crappy disease. You would expect to feel better after the rads. I haven’t had it on my spine yet (the onc is saving it up for a special occasion!!!) I had chemo and rads years ago for my inital bc and fully expected the rads to be easier than the chemo. What a shock I got, it made me totally knackered and miserable and all my bloody skin peeled off. It took weeks to get over - the good news is that it does get better and hopefully it won’t take too long. I also know we’re in line for the old stairlift routine, but I’m going to hang on as long as poss. We’ve only lived in this house for just over a year and I really love it, but how I wish it was a bungalow…
I’m off for a blood test shortly as I have to see the ONC next Monday and he’ll be able to tell me if this Arimidex tablet is working on my liver. Don’t know what will happen if it’s not, I’ll worry about it later…
I think you already know that we’re going on a cruise on Sept 4th and I’m bloody well going no matter what the outcome. Don’t care if I have to crawl onboard!!!
Well, I’d better uncurl my legs and sort myself out for my trip up the road for BT. Take care of yourself and I really hope you feel better soon. Lots of love, Dianne x x x
The pain I had in my back last year was my first symptom of secondaries. I went from being a normal fit healthy person to hardly able to walk, sit, turn over in bed or anything within 2 weeks of it starting! The weekend whilst I was waiting for the results of all my scans was the worst couple of days of my life, I was so scared. When I finally had my CT and bone scan results listing where all my secondaries were I thought the end was nigh and that I would be in a wheelchair and incontinent within weeks.
But here I am, 10 months on and mostly pain free. So there is hope. I had radiotherapy to two areas of my spine and then given anti inflammatory tablets (Diclofenac) and a nerve blocking dose of Amitriptyline which I take each night. The combination of these enables me to be almost as mobile as I was before, I am even back cycling. My Dr told me that six months on from my daiotherapy treatment I would be as good as I was going to get.
I hope my experience gives you more optimism and I sincerely hope that you get some relief from the pain really soon. I know how awful and scary it is.
I am really sorry you are in such a bad place just now. I know, even though several of us have bone mets affecting our spine, that even then we are all different in how it affects us. Like Sue when I had my diagnosis I thought this is it I will probably be in a wheelchair within weeks and that it was downhill from then on. But all those fears and thoughts were 8 years ago. Not only was my spine affected in all areas, but it had got at my pelvis & hips, skull, ribs, collarbone - you name it!!! But within weeks of some rads, and bisphosphonates (originally pamidronate, and more recently zometa) I was pain free and over the years it has more or less stayed that way. I do hope that as the rads starts to work for you (it can take a few weeks) you will begin to feel a lot better. Do keep in touch and let us know how it is going.
Just wanted to sympathise with you, I feel very much the same. I have been walking with a crutch since October last year and despite a hip op in March and spine op in April I am still using a crutch. In the last couple of weeks my pain seems to have got worse, and yesterday my Consultant prescibed Amtriptyline, so I am really encouraged by SusieVs post and hope that it works as well for me. I too have a CT scan and MRI scan due in the next couple of weeks and feel certain that this pain must be due to deterioration so dont want to hear the results.
Hope they sort out your pain soon, if they can then hopefully you can postpone that stairlift. Its crazy isn’t it when you have the mind of a young person but are having to consider all these aids that you associate with older people.
Hi Ann B, I am sorry that you have been having such a sh***y time just now. I have been there so fully understand how you are feeling right now. So you are not alone.
I too have bone mets in spine,ribs, pelvis and sternum and have been having treatment for bone mets for 11 years now. Thanks to my Consultant, GP and the doctor in the Pain Clinic in the hospital, my pain is under control. I take MST (morphine), diclophenac, Amitrypine, Gabapenin for pain. I am feeling so well that I recently towed the caravan back from Cornwall after my husband had an accident which resulted in him rupturing his Achillies tendon and is in a plastercast and is using cruthces. So at the moiment I am caring for my care! He has been so supportive over the years that it feels good to be able to help him carry his breakfast cereal and cups and cups of tea!
Yes there can be times when the side effects can be so awful but hopefully you will be feeling better soon.
Hello Diane, Dawn, Sue and Linda, Good to see you are still posting. Hope you are all doing ok. Much love Val
A little humour amidst all this…when I read your post all I could think of was you towing your caravan back from Cornwall to Scotland yourself - that must have been a natty harness??? And it’s uphill all the way from there!
Joking aside, well done you, I have only ever ‘towed’ on nice wide, straight roads!!
AHHH Ladies you do so lift my spirits that maybe I will get painfree too. I have been offline for a couple of days as pain over came me and just couldnt get in a decent position no matter where I sat and found the on relief I was getting was sleeping.
Thankfully my ex boyfriend was round at my house when the MacMillan nurse came and she explained I havenet been taking the correct dosage of Zomorph and so my ex is phoning me when Im due a dose to make sure I dont miss it on time or take the wrong dose. I do feel a bt better today than yesterday so hoping that will help. Although I was told I would have more pain following radiotherapy I didnt expect it to be this bad after just doing the one dose, dont rememeber much about probs with the last time I had it for 15 doses and that was 6 years ago, so maybe time has wipped that one away.
Thanks again I do appreciate the comments you send
Hi AnnB, I don’t know about Zomorph as I haven’t used that one but I take MST tablets twice a day (12 hours apart) which is slow release and if the pain gets bad inbetween I take Oramorph liquid.
I took Diclophenac for years in its normal form but now I take 75 mg twice a day and this too is Slow Release. One doctor at my hospital had recently worked in Neurology and she suggested I try Gabapentin for nerve pain. This really helped too. When I went to see the Pain Specialist at the hopital she told me I could quite safely take 600mg three times a day…I only take 6oo twice a day now. She was also the person who told me about the slow release Diclophenac.
She also geve me a Tens machine which I haven’t needed since my medication was increased but it is there if I need it. She also gave me patches that you cut and put on the sore parts which last for 12 hours and then you keep them off for 12 hours. I used them for a while but no longer need them either but have them put by.
I also take Amitriptylene, one tablet at night to help with the sciatica pain I used to suffer in my buttock and down the back of my leg. This was worse at night in bed.( sorry about spelling)
This sounds like a huge amount when I have written it down and makes me sound like a junkie but these medicines did not happen overnight. I have been having bone and nerve pain for 11 years in all. I am now relatively pain free. I am not drugged up either and still drive the car. I do however get knackered and go for a lie down when needed. Some medicines like MST can make you feel a bit dizzy when you first take them but my husband ( who is a nurse) told me to persevere and the feeling would get better as the body got used to it. So many people just give up…you must give it time.
Anyway that is enough for just now! What I am really trying to tell you is that there are lots of drugs which can help with different sots of pain and they have made life much more comfortable for me. I never needed even an asprin before I had bone mets. These drugs have made me get my life back again. Any questions…just ask. Love Val
Just catching up with post and could totally identify with your experience of rads. I had rads for a spine met last year and boy was I ill afterwards, have never been so sick in my entire life!!! Like my friend Dianne I am a determined bitch and went on holiday three days later - hubbie had to do all the packing as I was flat on my back or head in the toilet. We made it and things improved and we ended up having a lovely 3 week holiday in Spain, mostly spent lying on sunlounger by the pool with good books - lovely. I also recently had a referral to the pain doctor at the hospice, took a lot of time for me to make that decision but was so glad I did as they got things under control and pain is more or less under control. Like Val I take a lot of meds but they make my life good and I don’t get zonked with them. Doctor told me that if you are taking them for pain they don’t have these side effects.
I am glad things are improving for you and you sound more upbeat. Hope the improvements continue.