Lisa's update and steroids even after WBR?

Lisa about to start her WBR in few days and from what one doctor said she would still have the inflammation. Does that mean that she will still be on steroids afterwards. She was hoping not to have to take them once WBR was completed. There has been talk of gamma knife too. Does gamma actually get rid of waht is left after WBR. A bit confused now.
Lisa had to be admitted to hospital on Monday … a week after surgery to remove the large tumour … because they had reduced her steroids too quickly and she had become dehydrated and was having really bad headaches and vomiting on Monday. She is doing Ok again now and will probably come home tomorrow. What a week it has been full of ups and downs. Had MRI yesterday which showed that small tumour in back of head had grown slightly … not surprising as it has been over a month since discovered but she had to wait for surgery to large one first. Anyway hopefully today she will be seeing clinical Onc to organise WBR. Naturally we want this done as soon as pos. Lisa rang me just now and was worried that she may have to stay on steroids which she hates because of fat face etc after the Dr had told her that inflammation would still be there even after rads.
Lisa’s story sounds a bit like Suzy39 so maybe Suzy you might have an answer to this. Lisa is trying to be as positive as she can but these little things said by Drs are a bit scary.
Love to everyone who has answered me in the past and I so hope you are all going on well… I don’t want to repeat this week again it has been so frightening and confusing when she was doing so well up until last Sunday.
Sue x

Hi Sue

Please call the specialist nurses on our helpline for some one to one support and clarification about the treatment queries you have. I am sorry to read that you have had a tough week and hope Lisa continues to improve.

Best wishes
Lucy

Hi Sue,
Can’t really help about the need for steroids long term but I expect someone will be along soon who can or as Lucy suggested why not try the helpline.
I just wanted to say how sorry I am that Lisa has had a bad week and another hospital admission, hopefully she will be well enough to be discharged very soon.
Thinking of you both.
Love
Claire x

Hi Sue

Also can’t help with your steroid question…but just wanted to say I do think of you and Lisa and hope that the treatment goes as wll as it possibly can and buys Lisa some quality time. So sorry she was so poorly again on Monday…this is all so horrible and hard for you.

very best wishes

Jane

Just got back from visiting Lisa and will be going back in an hour. She is being discharged tomorrow for the weekend. I am picking her up at 12.30 to take her to another hospital to be assessed etc for WBR to start on Monday. She is to have 3 weeks of WBR. Poor Lisa has quite a horrible few weeks coming up. She has been told that the inflammation will get worse during the rads and so the steroids will have to be increased. Such a shame as today she is feeling good and walked quite along way with me to main entrance of hospital and back to ward. She also had the palliative care people in and I know they are lovely people but they did seem to dwell on the death side of things. Lisa knows the score but says she is just going to keep fighting each step of the way and doesn’t at this point want to talk about ‘the end’ which she insists still could be some way off … who knows. We aren’t stupid and know things are serious … the back tumour has grown in the last 5 weeks but then it has been 5 weeks with an aggressive cancer where nothing was able to be done because of the surgery to the larger tumour. The palliative people seemed to be surprised that Lisa can still do buttons up or not have lost her balance but then thats what i mean its now in her mind that it could happen any minute and she is thinking about it when she was still fighting. After they had gone she said she felt like giving up… maybe we just had a couple of women who didn’t understand how to handle someone like Lisa. She says she will face dying when it happens. She needs to fight otherwise there is no point. we will just face each set of treatment as she gets it. She has really known for ages that she has a terminal cancer but some people can live for some time with terminal cancer.
Anyway that is the latest … thank you for taking an interest and just being there … much better at this stage talking to people on this site who are actually going through it. I am now just praying that the next 3 weeks aren’t too awful for her.
Love Sue x

Sue

Just to let you know I am thinking of you and hope Lisa recovers. I dont like the attitude of the palliative care people I am sure there are some good ones Let Lisa know we are all pulling for her. As a mother of two I am so glad it is me with this illness and not them so my heart goes out to you and your hubby.

love DebsinCornwallxxx.

Thanks for keeping us updated Sue. Like Debs said, I really don’t like the palliative care peoples attitude either. Send Lisa my love. I have been thinking about you lots. I hope the next 3 weeks go ok for you all.
Best wishes,
Teacup xx

I’m so sorry Lisa has been in hospital again, and hope you have a lovely weekend together. Thinking of you all.
Nickyxx

Hi Sue,
Im with you in spirit, big hug.
Julie xx

Hi Sue,

thinking of you all, enjoy the weekend with Lisa away from the hospital,

Take care,

Kelly
-x-

Take care - enjoy the weekend as best you can.

Love, hugs and best wishes

Anne xx

Thoughts are with you at this difficult time.
As far as I am aware after WBR she can have a number of focused treatments, (gamma Knife), to any remaining ‘hot spots’. The key is that it must be very focused, as gamma knife is, to avoid radiating tissue which has been treated with WBR Gamma Knife is often referred to as radio surgery as opposed to radiotherapy due to its high degree of accuracy.
During my investigations both on the net and by talking to docs. with respect to my wife’s issues WBR and especially radio surgery can be extremely effective and very successful in either dramatically shrinking or irradiating the tumor(s), in the order of 80-85% response I think from memory. I have read about people who have had it done a couple of years ago with no recurrence or progression.
There seems to be a school of thought that WBR can be a preventative measure, i.e. in my wife’s case, a tumour was discovered at the base of the skull interfering with a cranial nerve - the tumour was pressing on the outer surface of the brain, even though there was no evidence of brain involvement from the scans it was suggested she have WBR as a preventative measure following the stereotactic radio therapy, (focused but not as good as ‘gamma kinfe’), to the problem area. This she declined, preferring to leave this option in reserve so to speak and take the chance, the reasoning being that if it aint broke don’t fix it. I have done a lot of investigation on this so called preventative treatment and am not wholly convinced. Unlike a drug or ‘real’ radiation there is no residual effect, i.e. half life so once the ‘beam’ is switched off the effect disappears immediately, one doesnt remain radioactive so to speak however I can understand that it would be a good idea where there is likelihood of micro tumours or stray cells that may be present and not detectable by current imaging techinques.There are side effects of course, these will be explained I am sure by the doctors/radiologist.There will be hair loss, which will begin to regrow after a couple of months, extreme tiredness for a couple of months + possible skin issues etc. WBR has been used for many years however the dosage rate and frequency has changed from what it used to be thus minimising harm to healthy tissue, I believe in a year or so the patient can expect to suffer some slight short term memory loss, although not problematical. There has been suggestion that it can bring on early dementia type symptoms however this is not proven to be significant in younger patients, there is lots of info on the net on this as well.
It is highly likely that she will continue on steroids for some time to reduce inflammation, my wife weened herself off them over a couple of weeks after having taken them for a month. They are important to help the brain recover and reduce swelling especially in the areas of focused treatment, apparently the brain has no natural drainage system to cope with these events and it takes a while for the body to ‘clear up’ the dead and damaged tissue.
Lisa has exactly the right positive attitude, the same as my wife, (another Sue!) in fact bless her, she has every reason to hope and fight on I agree, whats the point if you give up? I too don’t much like the attitude of the palliative care people, things have changed and are changing rapidly with respect to treatments and response rates, there is every reason for hope and a successful recovery. Do make sure you fight for the best care available, second opinions and referrals via GP involvement to specialist centers etc. If there is one thing my wife and I have learnt is to fight your corner with the NHS, this is not as it should be and desperately unfair on patients who don’t have the support of family and friends to help them. The NHS does some brilliant work and has world class professionals working within it however we find it does need prodding with a stick to get things moving and encourage joined up thinking!!
Our very best wishes to Lisa and all concerned from Sue and I.
Dave F

Dave thanks so much for that. Really useful. I will keep you informed as how things go with Lisa. Sending my love to your Sue too.
Suex

Hi Sue

I was on steroids for inflammation just recently went I underwent radiotherapy again but have now stopped them (3 weeks after finishing rads).

Regarding the palliative care side - are you aware that there has been a lot of work done in the area of dying and if you google the Gold Standards Framework and the Liverpool Care Pathway it will tell you a lot more. I’m currently working with our Lead Palliative Care Nurse on producing a palliative care fact file for patients so it will inform people of every aspect of palliative care.

Pinkdove

Dear Sue

When you were posting a few weeks back, I was thinking to myself, that as well as Lisa being able to have various treatments, I hoped that you were going to be supported by the palliative care team as well (one does not exclude the other). So I feel really sad for you and Lisa that you have just been seen by the palliative care team and feel that it was a negative experience that left Lisa feeling rather low and deflated and “why bother”. What a shame. When I worked at the lyphoedema clinic I had quite a lot of dealings with the MacMillan Team at Christchurch (I think you are from Bournemouth) and they were wonderful (this is some 10 years ago now). I never hesitated to refer people to them for additional support and care, they were wonderful at looking after the whole family and ensuring that people had good symptom relief and that all the professionals were working together to provide holisitic care. Their involvement in no way meant that death was imminent, rather that they had become part of the care team, were known to the family and could step in with as much or as little support as was wanted.

Their involvement can give the impression that “this is the end”, but that is not the case at all. The people I have cared for over the years who knew that although they had plenty of living left to do, they were not going to be cured, and that they did need to face the possibility of death, sometimes sooner than later, spoke of several things they found helpful. The most important of these is realistic hope. Without that it is easy to feel what’s the point of trying any more. Realistic hope is for achievable objectives, getting out of hospital to be able to have a week at home, getting to a friend’s wedding, making it to a school play - things that are in the future, but not too far. One of the saddest situations, I think, is when a loved one dies and family and friends are left thinking “if only I had said so and so to them”, or “we never talked about such and such” or “I don’t know what they would want - we never talked about it”. Good communication allows people to talk openly about death without everyone trying to protect each other, which can lead to the loneliest people in the world. You talk about it, acknowledge the possibility of it, and can then forget about it, if that makes sense. The fact it’s been talked about can bring enormous relief to everyone.

So I think, a big part of what’s important is about being at peace with the world and with yourself. Expressing your love, telling friends and family what they mean to you. For some people it is a matter of getting things in order - as we all should. There is something here about being ready to die, and then getting on with living, if that makes sense to you. Good palliative care addresses the needs of people who say “I am afraid of dying” - it helps takes the fear away, when there are no treatment options left, or when the trauma of the treatments outweights any possible benefits, the team are right there ensuring expert care and comfort for the whole family right to the end and beyond.

I am sure the people you met will be getting in touch with you again, and I think it is really important that you and Lisa tell them how their visit left her feeling, and that you can talk about this. I hope this first negative impression will not stop you benefiting from their help and expertise. And most importantly of all, I join with everyone else here hoping that the next stage along the treatment path brings more improvements to Lisa’s quality of life, and that you all have good days ahead and lots to look forward to. Hope I have not gone on too long, or said anything that might have upset you. Love and biggest of hugs. Sarah xx

Hi Sue

I hope Sarah’s wonderful post is helpful for you and Lisa. I too am sorry Lisa was disappointed by her contact with the palliative care team. I have several friends in different parts of the country who have had just brilliant support from palliative care teams. I am a long way from being in Lisa’s position but met a woman from my local team (in Southampton) a while ago and now feel much better informed and comfotable about being looked after when the time comes.

I really hope that Lisa’s next tretaments bring her some relief.

very best wishes

Jane

Sorry to hear about all your worries and Lisa being in hospital again.
As others have said, I’m saddened that yourpalliative care were so negative. I’ve been seeing mine for the last 18 months and they have been wonderful to me and my family and have accessed all sorts of things for us.
WBR sounds very scary and I know steroids are horrible. I had steroids from May - sept this year and ended up with a very fat face but I would rather have a fat face than be suffering with other symptoms and it did extend my life and future options.
I really don’t know what to say but you sound such a lovely mother and daughter and I can understand your distress as i see it in my mum’s eyes and I have no idea how to help her to cope knowing that my life expectancy is very short.
Hope all goes well with the WBR and hope next time they give you better advice about cutting back the steroids.
Love Kate