Lisa had rads to lower back

Lisa has had a bad weekend with pain from her back and hip getting worse and worse … almost screaming with pain in neck and back of head and could hardly walk. Rang Onc last night and he said to up the steroids again from 2mg to 8mg … big disappointment to her because she was hoping to cut them right down. This morning she wasn’t too bad at first but then pains in head started again and she was in tears when nurse came to do a blood test ready for paclitaxol/avastin tomorrow. The nurse looked really worried and rang Onc and said she thought that Lisa needed to be seen. 12.30 we had phone call from radiotherapy dept that Lisa should go to hospital at 3.30 for planning. What a rush round but we got there. After planning she came out and said she had to go and have one large dose of rads straight away to ease her pain. One big cross drawn on tummy. They seem to think that the problem lies in the lower back where they saw a thickening of the dura on the MRI scan two weeks ago. This is pain relief rads of course. She had the rads and came out with a sick bowl because they said she would probably be sick trying to get home! Great!
Poor Lisa … I was trying to drive in rush hour traffic in the heat and she was vomitting into the sick bowl … she wouldn’t let me stop because she wanted to get home. She felt so ill and was crying with the pain in her neck, head and stomach … as you can imagine it was breaking my heart to see her like this but nothing I could do. I was trying to get her to take deep breaths … and tyrying to take them myself too!! When we eventually got home she was sick several times again and sat with her head in her hands at the table. She has now taken an anti emetic which we hope she will keep down long enough to work. I have now made her a solution with boiling water, salt and sugar which I used to do when she was younger and had sickness … fearing that she will dehydrate. We can’t understand why they didn’t give her anti emetic injection at the hospital.
Anyway she has to face the chemo tomorrow unfortunately although we want it to start so that it will get working I am afraid that Lisa will still feel ill… I just hope that the rads work will work on the pain. They decided to give her one big dose instead of 5 smaller ones because of the chemo tomorrow and so that she won’t have to drag backwards and forwards to the hospital each day for 5 days.
Has anyone else had this big dose in one go?
Just thought I would let you know the latest … what a day!
Love Sue x

Hi Sue and Lisa
I had a large dose of rad therapy just before starting taxol and avastin the nurse asked when I was dueback at the hospital and I said 2 days, she said I wouldbe glad to be back. She was so right I felt like shit. I have not been through the operation and all the other rads that Lisa has so give her my love and wish her luck. I hope it isnt too unbearable, the sooner she start tax and avastin the better I have everything crossed for her.

Love Debsxxx


meant to say it did work it took about 5 days before pain disappeared and it has not come back.


Thanks for that Debs … Lisa gone to bed but said she will suffer if it takes away pain. That is reassuring.
Love sue x

Dear Sue and Lisa - I always read your postings, and think about you so often. Reading the one above was just heartwrenching. What a dreadful day for you both. Like you, I can’t understand why they wouldn’t have given Lisa an anti-sickness injection before she left the hospital having predicted that she would feel so unwell after the radiotherapy. Anyway, the main thing is that I hope it will ease the pain that she is in. I know that you had a bad experience with the palliative care nurses, but I wonder whether Lisa has seen the palliative care specialist doctor, this would in no way change all the treatments that she is having, but these doctors are the absolute experts in symptom control, and in particular in pain control. Will be thinking of you both, and watching here to see how things go over the next few days. The biggest of hugs to you. Sarah xx

Hi Sarah … thanks for that
Yes it was a bit archaic wasn’t it? Just to be handed a sick bowl and sent home … an hours drive in heat in rush hour traffic with Lisa vomitting and shouting out in pain isn’t my idea of fun!! She feels very queasy this morning and has taken anti emetic … not good start with chemo in couple of hours! Still in pain too across back and shoulders and neck… and her legs are really bad this morning, knees and calf muscles, so maybe the rads caused that. She is trying to get dressed. Very independent and won’t have help! She can’t take steroids this morning because she will be given 8mg intravenously with the chemo later so she will be more achy than normal.
Will let you know how she goes… just want the chemo to start working. Isn’t it funny how goal posts and expectations change … this time last year i was dreading her having chemo and thought it was the worst thing in the world to watch her have but now we want chemo to start hoping that it will do its job and give her some more time. Last year Taxol shrunk her breast tumour right down.
By the way Sarah … the Oz relos left early yesterday morning and are about to land in Sydney in an hour.
Love Sue x

Sounds like you both has a terrible day - but if it takes away the pain it will have been worth it. Good luck with the avastin and chemo - let us know how Lisa gets on. I have cycle number three next week so can share stories about symptons if that helps!

Thinking of you both.


I had a big dose in March this year to the top of my spine (just below my neck) plus the base of my spine for five days and this was the first time it really knocked me out and made me feel yuk (having had two previous lots of rads, one for the breast and the other for the thoracic area of my spine) and it took about 3 weeks before I felt ‘human’ again!

One thing it did do though was get rid of the sciatica pain I had in my left leg.

Good luck

First Taxol/Avaston done. It took about 4.5 hours altogether. Lisa was really bad this morning with aches and awful pains in shoulders and back of head. She didn’t know how she was going to sit and have treatment but we got her propped up with pillows. The Piriton soon made her sleepy which helped … and she put the heat pad around her shoulders. Nurse couldn’t use portacath as its still too bruised and sore and eventually managed to get a vein in wrist to use. Blood pressure etc seemed Ok so all went well. She has been trying to walk around since nurse left but is very stiff and can’t move head or neck. We are wondering if its inflammation still from WBR which only finished 2 weeks ago. We are told it gets worse before it gets better after WBR.
Anyway she looks a poor old thing bless her but at least she was able to get through the first cycle which she needed to do.
Would love to swap notes Geraldine. At the moment Lisa couldn’t type herself because of her neck problem. If it wasn’t for pain in neck, head and shoulders she wouldn’t be too bad at all … just very achy in all joints which she could tolerate.
Love Sue x

Hi Sue and Lisa
glad your first tax avastin went well. I suffer joint pain around third day its not that bad and painkillers deal with it I also find a hot water bottle on my legs helps. Sounds a bit daft when the weather is so nice but for me it works. Mind you I have to fight off my little westie Emmy she follows me all over the bed she likes her head on it.

Take care and good luck

Love Debsxx

Sue, I am sorry to hear Lisa and you are having such a hard time. I hope the chemo does it job. Thinking of you both. Take care and best wishes, xx

Glad you got through today - Lisa deserves some luck so hopefully she’ll sail through chemo. My advice similar to Debs aches and pains do happen but not too bad so - takes some pain relief, hot water bottle and get comfy! Other effects tackle them if an when they come but feel free to ask away - the once thing I didn’t expect was for my blood pressure to go up!


Lisa’s blood pressure was Ok today and stayed at 130/80 so next time they may do Avastin a bit faster. We think Lisa’s pains are to do with the WBR which she only finished 2 weeks ago. Her face very bloated and goes up and down a bit so could be inflammation in brain still. Don’t forget she had two very large tumours… one removed surgically… and now the lump in her back. It has all happened at once bless her with no break in between to settle down. Its a matter of getting the medication right I think with the combo of steroids, painkiller (oramorph), letrazole, anti emetic and now chemo and Avastin. Come to think of it … you name it poor Lisa is probably having it! She certainly is having a very bumpy ride at the moment. She looked so comfy earlier propped up against pillows on sofa with heat pad around neck … oramorph making her very drowsy… I don’t think she wanted to move.
We will keep comparing notes … Lisa just waiting for the day she can get up and not be in pain. It has all come on so quickly … started with aches and pains a couple of weeks ago but suddenly this last few days turned into pains… hence sending her for rads dose to base of spine yesterday.
Sue x

Dear Sue and Lisa,
I just wanted to say you are both in my thoughts. I have been checking how things are going each day but don,t always leave message.
I had large dose rads in August and it took a few weeks but did help after that.
I have started wbr today and also one large rads to my ribs. I have been waiting for a few weeks for them to decide whether togo ahead with wbr as there were other concerns but decided that steriods were not enough and that i needed rads. Should have started last week but when i arrived for planning they found my previous mask and settings had been sent off hospital premises and would take 48 hours to get back, onc was not prepared to do anything ( quite right too ) without all the information. Then due to start yesterday but they forgot the transport for me. So i have been a bit fed up but compared to you both it is nothing. Sue take care of yourself as well and a big hug to you both.

love jenny xx

Hello you darling girls,
What an ordeal you’re going through. Just wanted to send my love and hugs,
Jacquie xx

Hi Sue and Lisa,

I have been reading your posts Sue and just wanted to send my love and good wishes to you both. I think of you both often and have to say that you are a wonderful Mum and must be a great comfort for your dear daughter.

I’m afraid I’m not too good at getting things across in words, but just wanted you both to know you are in my thoughts.


Tracy xxx

Thanks everyone for your thoughts.
After a day taking Oramorph yesterday the excruciating pains in Lisa’s shoulders, neck, head seemed a little better this morning. She called it bearable but was so happy that it wasn’t as painful as last few days when evrytime she moved she cried out in pain. Our GP called to see her this morning ( a pre arranged appt) and was surprised that she hadn’t been given more pain relief. He said that no one should be in the pain that Lisa has been in lately and that they have loads to help. He explained all about how the WBR will have made the tumour so much bigger ( ‘blown it right up’ was his expression) and along with the extra fluid will have caused the awful pain she has been in. She told him that she was told it would get worse before it got better and was trying to put up with it. Anyway to cut a long story short he has prescribed her tons of stuff including slow release morphine tablets and slowly went through it all telling her how to add or reduce medications as she goes over next few days. She almost cried with relief because she was beginning to think that she had something else wrong. He told her that she is having a particularly rough time but she was doing so well and being so brave. He says she only has to ring and he will be there. He was really wonderful. We both felt so much happier after he had left. He says that with pain relief maybe in few days she can start reducing steroids again as she has had to increase them again since Monday and she so wants to lose some of the bloatedness … although she did say that she would be 20 stone rather than have that pain. Her normal weight is 8 stone but is now 10 stone.
It was just so wonderful to see her moving her head slightly tonight without pain. She is now having pains in hip and has difficulty walking upstairs but that is probably from the rads to lower spine on Tuesday… but again its bearable she says. She starts taking morphine tablets tonight along with Movicol because she has problems in that area too!!
Just thought I would give you another update. Bless her she does seem to be having it all chucked at her at once and I know a lot of people who would have thrown in the towel by now.
Love to all and hope you are all doing Ok especially those who had WBR same time as Lisa.
Sue x

Really glad to hear the GP has been able to help with additional pain relief - hopefully it will make a big difference. Can vouch for the effectiveness of Movicol too - worked very well for me when I was on Taxol and Avastin last year.

Take care.

Kay xx

Hi Again Sue - Have just been reading through your last few postings. What a relief to read that your GP has been along and recognised that Lisa was not having adequate pain relief, and that he really seems to be addressing that, and also able to offer extra support. As he so rightly says, no one should be in the dreadful pain that Lisa has been suffering, there is lots that can be given to help. And for you Sue, to see your daughter in agony from every movement, it must have been just unbearable. So, so sorry for you both that each day is such a struggle, and both of you so brave and resilient. I saw above that your relatives are now back in Sydney, were you able to enjoy their visit? I expect that it was all very emotional. Will be thinking of you - and everyone else here who has been/is going through this really challenging treatment. Wow, the strength of the human spirit to overcome adversity is just amazing. Sarah xx

I am really pleased that your GP appears to have grasped the situation Lisa is in - it must be a real relief for her (and you) that he appears to be keen to assist. I am sure once the pain is reduced either through the drugs or the time that Lisa can get back on an even keel.

The tax also makes me really constipated, so much so I feel sick and have stomach pains - ironically though last night I had the opposite problem for about two hours!

Take Care - Geraldine