Hi slipslop You need to change radiation onco's!  My mother-in-law's first medical oncologist (the general one) was like that, only giving her little bits of info and dismissing her new pain as 'old lady bones' (which turned out to be new mets). The mask he mumbled about is one they'll make for you - which keeps your head in the right place for each radiation zap. If you're claustrophobic, you might find it difficult to deal with.  My m-i-l is, and the course of radiation to a neck met was done with tape holding her head in position each time as she couldn't deal with having a mask made.  After seeing someone in the waiting room with their mask (each one is custom made), I can understand her reluctance. Onto radiation side effects, if the onco isn't forthcoming (the onco is supposed to give  a list to you when you sign up your treatment plan), badger the reception staff or nurses for the list. Majority of people suffer the skin burning (like severe sun burning), which sorbolene cream greatly helps... but radiation to the head area brings with it possible mouth problems - burning inside the mouth and/or throat etc.  Drinking a little bit of mylanta or gaviscon before eating helps a bit... everyone's different though. Biotene products sold at the chemist are great for helping with the dry mouth symptom.  Maybe other folks who have had head radiation can post something on here.  My m-i-l also had another dose of radiation to her shoulder and to the lung area, so her trachea and oesaghagus got badly burnt each time. The big thing about radiation is that the side effects won't happen straight away, they come on a few weeks after starting radiation.  You'll be feeling fine then hit the deck like a sack of sh*t.... although a lot of people seem to sail thru radiation (hope this is you).  When she had her first lot of radiation, she was the only one with the rare side effect, whereas the other patients either had no side effects or only had the skin burning to cope with. Take care Zoe ... View more

HI again Thanks for the tips about Biotene products - we found them at the chemists.  It is a week tomorrow since the first cycle of chemo (gemcitabine + carboplatin) and she only started getting the sore mouth yesterday. The mets in her neck are giving her a lot of grief and it is hoped that the chemo and next course of radiation (starting next thurs x 5 days straight) will get the pain under control. She linked in to the home based palliative service just over a week ago and they have been absolutely wonderful. As expected the nausea is overwhelming her, but they've had her on a syringe driver with sub-cut dosage of maxolon over 24hrs, which seems to be keeping it at bay.  She pops a zofran wafer just before eating but has still had trouble keeping anything down.  She managed to get half her brekky and most of dinner in today which is great.  She also had her first 'normal' day without any medical appts etc and watched her grandaughter (sister-in-law's daughter) win a couple of ribbons at the local equestrian gymkhana today. Was great to see a smile on her face, albeit a pain lined one. We've also come across some magic heat pads, by accident more than anything.  You get them from chemists - the brand is Hotteeze.  About $21 for a pack of 12 and you get about 10-12hrs heat from one pad.  You peel the backing off and stick them to your singlet (or on some fabric eg tea towel for using around the neck or other awkward areas) - absolutely marvellous!  The heat along with the break through meds and arthritis cream all seem to help. We saw the Nurofen heat pads and tried one of those, but they don't work as well as the Hoteeze ones.  We also tried the Elastoplast heat pad, which is a massive one about three times the size of the Hoteeze.  It is activated by capsicum/cayenne pepper and works really well!!   Great for the lower back where her large secondary met is, but not so good lying on one's back with it on, as it generates too much heat when compressed. Prior to chemo starting last Monday, she was having acupuncture twice a week, which she was getting a lot of benefit from. We're off to see My Fair Lady on Tuesday night, which she's looking forward to.  Since her respiration has worsened, she's not able to move around much without getting short of breath and having asthma-like attacks (god bless inhalers).  We've been able to loan a wheelchair from the hospital and have sold it to her as a way of getting good seats at the theatre 🐵  She's adamant that she's only staying with us again while she's having treatment and anticipates being able to look after herself again, but the lung cancer coordinator and the family think that she won't be well enough again to be on her own.  These asthma-like attacks don't have any pattern to them and have happened at all hours of the day and night, including when she's just sitting/not doing anything.  She was hospitalised last week (thankfully in the onco ward, whose nurses are just wonderful) and is very depressed about  her sudden loss of independence (it was also the same time she decided she'd have to give up work) and change in lifestyle.  The medico jury is still out on the definite cause of these breathing attacks, but they think it is the neck tumour pressing on the nerves around the windpipe... a very scary scenario for her. Better pen off and draw to a close, hope everyone had a great weekend. cheers Zoe ... View more

Hi Raven Thanks for the tip about Biotene products - are they sold at chemists or health food stores or online?  My mum in law is starting her first chemo today and we're trying to have everything on hand to pre-empt side effects, after bad reactions to radiation. The chemo nurse recommended using bicarb soda as a mouthwash/mouth cleanser as normal oral care products are too harsh. She's had great difficulty inhaling since Friday and the doc is coming out to see her this morning.  She's going to confer with the onco to see if chemo is still viable. From what people have been saying about Biotene we think we'll get some anyway, as she's had a dry mouth for ages since first bout of radiation in March. cheers Zoe ... View more

Sorry Butterfly, just reread your msg and I ran off on a tangent. My MIL gets intermittent pain too and it comes and goes with no apparent pattern to it (eg not before/after food or anything). She's sick of having CT scans, MRIs etc and is putting this one off as she feels it will only tell them what's going on, but not that anything will be able to be done for her. That's awful to hear you're still suffering so long after having your radiation.  We haven't heard of radiation enteritis, although it makes sense given organs are burnt when one gets radiation thru the front abdo.  They were radiating her lower spine and for some reason radiated from the front... which meant her bladder, kidneys, liver, digestive system etc all got fried (she had over 10 treatments).  Very worried about permanent damage, is that what radiation enteritis is? take care Zoe ... View more

PS Forgot to add in that Reena's advice about listening to your body is very important too. My rellie is fortunate that several of her close friends have been practising Reiki for many years (vets who use it on animals too!).... which gives her an incredible sense of peace and well being. The first time she had two friends reiki her at the same time, she had an enormous burst of energy afterwards! ... View more

Good morning Yep, the nausea and fatigue are very common side effects. The nurses put us on to lemon barley cordial to help with the nausea (for some reason the traditional remedies like ginger etc were no help at all). Drinking weak lemon barley cordial instead of plain water seemed to help. My rellie fought against the symptoms during her treatment as she didn't want to 'give in' to it. But several nurses gave her the advice that the fatigue was going to happen whether she liked it or not, so to get the most out of life, concentrate on conserving energy for things she really wanted to do (eg walking the dog while she was able to) and get rellies/friends to use their energy on the day to day stuff (like cleaning, picking up meds from chemist etc). That approach seemed to help her. Unfortunately her treatment was only palliative and the bastard disease has finally overwhelmed her. She is battling nausea now from the high levels of pain meds she's on and the fatigue is enormous too from the pain meds. She also suffers from dry mouth which she was told is another common side effect and another cancer patient put her on to Biotene products, which are available at the chemist. At hospital they are using a balm called Oralife, haven't seen it at the chemist so not sure if would have to order thru Pharmacy Direct or if it's not available commercially (???) That is a bloody marvellous product. anyway, starting to ramble on again... that's what happens I guess after little sleep, not helped by inconsiderate neighbours on BOTH sides partying and yahooing until the wee hours of the morning. They obviously don't have to work over the festive season. Take care all Zoe ... View more

Hi Butterfly   My mum-in-law completed radiation to abdo and lung areas about a month ago and still having trouble from it - still not able to eat whatever she likes (appetite eventually came back) and is still on really small quantities... the pain comes and goes, plus nausea still rampant.  Zofran, stemitil etc only takes the edge off it but doesn't stop it. She recently saw a naturopath up in Sydney who has a special interest in cancer and gave her some yummy (not) remedies.... not sure if they're working or not, but nausea doesn't seem as bad. Docs want her to have a full CT scan as they don't know what's causing the fluctuating temps this long after radiation, nausea etc and suspect the cancer has metastasised again somewhere in the abdomen. To make matters worse, her horse of 20yrs odd had emergency surgery last night for bowel obstruction and it turned out to be a benign tumour which had wrapped around his small intestine... then they found a second one. Poor horse sporting a lovely big wound on his stomach and next few days will be touch and go. She joked last night that she must have done something to jinx herself in a past life.  If the horse dies we think it will be the undoing of her, she's had so much tragedy with everything going on and this would be the last straw.  Sorry to harp on (again), story of my life. Have you tried drinking lemon barley cordial?  For some reason this seems to sit better in the tummy than plain water.  The oncology nurse recommended it and it works a treat.   With regards to tummy pains, apart from Buscopan there didn't seem to be much they could do. The naturopath prescribed Essiac Tea for my MIL - when reading up on it, it is supposed to work a treat managing symptoms.  She brewed up her first lot late last week so is waiting to see how it goes.  It's a bit fiddly with brewing it up etc, but after reading up on its benefits, seems worthwhile giving it a go. take care Zoe ... View more

Hi Lemon barley might help - in the cordial section at Woollies/Coles and its Bickfords brand - in a glass bottle. My relative wasn't able to drink water during and after her radiation treatment, but the onco nurses told her about drinking lemon barley cordial - much easier to keep down than water. Not sure if it will help on chemo or not. take care, Zoe ... View more

Good morning A short note to let you know I've posted your message up on our electronic bulletin board at work... hopefully will reach someone who can take in Ronnie. We have our relative's dog with us too but feel guilty as he has been incidentally neglected while we are visiting at the hospice... although it's wonderful we can take him there to visit and we're doing our best to keep his routine as normal as possible.  It's true what they say about dogs being very tuned in to their owner... he became very clingy to my mum-in-law a few months before her diagnosis, so he must have sensed it. I hope Ronnie is able to find a home, he looks a delightful companion! Take care Zoe ... View more

Hi Annie You must be in a terrible amount of pain, let alone the enormity of coping with it all. I hope they were able to remove all the nasties and you've got a good road ahead of you? I'll ask my hubby when I get home what his Dad was able to keep down - he had radical surgery  for the throat cancer then chemo etc pretty much straight after, so he was in a world of hurt. I remember at the time his mum telling me what she had success with (about 6yrs ago, just before I met hubby) but my memory is AWOL, so best to get it from the horse's mouth. Take care and hope your recovery is progressing well. Zoe ... View more