Lisa had her second taxol on Weds and was Ok on Thurs … just usual lethargy and stiff shoulders and back still from WBR and rads to her spine but then Friday felt so tired … no energy at all and could hardly put one foot in front of the other. She cut down on the morphine as she was wondering if it wasn’t helping but yesterday and this morning she is feeling just the same but with even stiffer and painful shoulders and neck. We were hoping that by today she would feel a bit better … it is getting her down too feeling so lethargic, she could easily stay in bed all day but won’t and in any case she is best to try to move around with shoulders and neck so bad. we aren’t sure if its still all the rads still reacting or the taxol. She tolerated taxol well last year but then she wa shaving it every two weeks and hadn’t gone through the brain op, WBR and spinal rads that she has had this year. I looked it up and her brain op was only 9 weeks ago today and it has been all go since medically.
How are you doing with taxol debs(cornwall) … any ideas on why she is suddenly so lethargic and ‘down’? What steroids do you take after taxol? Lisa has had 4mg per day since Weds. Its horrid seeing her like this when normally she is able to fight it for at least a few hours a day.
Love Sue x
Sue, you might think about asking Lisa’s Onc to increase the steroids. I was on steroids for 30 yrs for Crohn’s - initially 60 mg a day and went from 5 stone to 10 stone in 6 weeks. Over the years I was on a maintenance dose of 5 mg a day, but frequently had to increase it to 25 mg a day when having a flare (faecal incontinence, pain and spasms in the lower abdomen.) It did the trick for me, but docs don’t seem prescribe those high doses any more as so much more is known about serious side effects with long term use, particularly bone density loss, which I now have. Perhaps going up to 10 mg a day will help with her appetite and lethargy.
So very sorry to hear how ill she is…you are a Mum in a million, and we all should have one like you!
Hugs,
Liz.
Thanks for lovely comments Liz. Honestly I really do feel just like any normal Mum … trying to be there and finding out all I can to help … its just trying to find that balance between being helpful and reassuring but not interfering too much. We Mums can feel so helpless unless we are doing something! This site has been a wonderful help and people like you writing to me has been so reassuring.
As I was writing this Lisa phoned me, she feels really bad this morning (which I already knew) but has now been sick. Not sure whether to ring someone if she is no better later … being a Sunday puts me off. Last time she kept being sick it was the brain tumours. What a worry and not knowing what to do.
By the way Avon I loved the story about your friend and the hair.
Will let you know later how Lisa is.
Love Sue x
So sorry to hear that Lisa is having such a horrible time at the moment. I would not let the fact that it is Sunday put you off phoning for help if she is no better later.
Dear Sue - If anyone is in need of the “out of hours” medical services, it is someone like Lisa. Please don’t hesitate to phone for help. You don’t have to do this on your own, although I am sure that often you are feeling that that is just what is happening. Do hope that you and Lisa get the help you need. Thinking of you, as I do every day. Love Sarah x
Hi again Sue - I agree wholeheartedly with Sarah (seabird). I have had to call the out of hours service twice on a Sunday in the past (once for erysipelas, other time a severe allergic reaction to azathioprine, which caused vomiting and diarrhea). The on call doctor arranged an ambulance immediately and the ER staff told me I was right to call as I needed urgent antibiotics, which of course I couldn’t get locally. The doctor talked me through my symptoms before he decided on his action. Another time, during the week, when on FEC chemo, I got purple spots on my left leg and had a fever - I rang the Oncology ward at 6 pm,( 2 hrs drive away) they rang the local community hospital, and a volunteer driver was sent for me. An A&E doctor was waiting for me, said I had sepsis and gave me an antibiotic shot, and pills to take home. I was very reluctant at making a fuss, but at times, it can be the right thing to do. I am sure whomever you ring, out of hours service or the Oncology Dept, someone will listen and advise Lisa what to do for the best.
Take care both,
Liz.
Sorry to hear that Lisa is having such a bad time.
I’m not surprised that she is tired as I am on just 2mg of dexamethasone and I sleep around 12 hours a day. This is despite having not had surgery, it’s nearly 2 months since WBR, and I have no treatment other than 3 weekly herceptin.
I’m just amazed that Lisa manages what she does.
Love,
Lynn
Hi Sue and Lisa
I have had the same problems with tiredness although that word does not describe it and the ones I can think of are unprintable and would get me kicked of this site.
I have my treatment on Friday all day is spent in chemo we usually get home 6ish I have a glass of wine and cook dinner thencome on this site and type like a loon. Hubby bless him usually comes to bed and I join a few hours later. Saturday up after breakfast in bed wonder into St Ives for as long as I can manage maybe 1 or 2 hours and it feels like I have borrowed some old drunks legs! Have a glass of wine and cook dinner and then Sunday thats today well I have been asleep most of the day feel like I am in a trance tomorrow I should pick up a bit but not always it can be another dozzy day. Tuesday I have a bit more energy but not much. At first I put it down to rads on spine hip etc but I dont know I do know its bl…dy hard.
I only have steriods before chemo as part of the pre meds but I will say I do feel aot better than before I started treatment I know this sounds daft but I can feel the cancers are shrinking it is truly a tough time. In my head I think “oh today I will do such and such” in my body I lack the energy.
Please tell Lisa to be patient and as long as she doesnt feel its something nasty just rest I hope one day soon we will post and be able to laugh at the total lack of energy.
Loads of love Debsxxx
that has used up my reserve so its back to sleep.xx
Hi Sue
So sorry to hear Lisa is having a rough time, ‘my’ Sue incidently is also feeling tired amongst other things after her hip replacement but is doing relally well.
The extreem fatigue I would imagine is almost certainly down to the radiotherapy particularly the WBR. Although fatigue is often experienced shortly after radiotherapy it is I believe very common for it to hit with greater severity a few weeks after, particularly with WBR. It will subside but it will take time, somtimes 2 or 3 months, I am sorry if I appear negative but just offering my 2 penny worth and trying to offer an explanation. I am not a medical expert however I feel I should be sometimes after lifes experiences to date and the extensive research I have done over the years! I have been following Lisa’s thread and she has been through a heck of a lot lately, I would suggest rest and sleep when the body calls for it is a good thing, allowing it to concentrate on repair and renewal.
Thoughts with you…Dave
Hi Sue and Lisa - I had my third tax avastin cycle on Tuesday - a week later I feel fine (well achy, sweaty, diarrohea and sore tongue) but I do feel really tired! I can’t explained the tiredness - when I get going I am OK for a while but I could spend all day in bed or on the sofa. Part of it does I believe mean my body is telling me to rest, part of it is just the chemo. What I do know is that it is really frustrating. By the way I have taken far more domperidone this time round as I have felt really sicky.
Take care - rest up - and if you have any doubts give someone a call.
Geraldine
Thanks everyone … a lot of reassurance there. I think Lisa is Ok with feeling not well as long as she knows its ‘normal’. Its that awful fear of something going wrong again. She was sick twice yesterday morning but not again. She wouldn’t allow us to ring up and said that she felt better after being sick the second time but we said that we would ring Dr if she was sick again but she wasn’t. Our fear was because she didn’t feel sick at all just suddenly knew she was going to vomit seconds before she did. That is exactly what happened when the brain tumours were dx … we are wondering if its inflammation in her brain still. I am definitely talking to someone today whatever Lisa says and hopefully an answer will be found … she is on so many drugs mind you that it could be that.
This morning she has been awake, had tabs and couple of biscuits and gone back to sleep. Just no energy at all.
Thanks again for replies
Love Sue x
Dear Sue - I was wondering how Lisa was as the day went on yesterday, and glad to hear that the sickness settled down. But a good idea to talk with one of her doctors today and see if they have any ideas. With you in spirit. The biggest of hugs. Love Sarah xx
Lisa a bit better today … still virtually no energy but no sickness. Rang up nurse ( team co ordinator) who will do bloods at home tomorrow and she says she is fairly convinced that the way Lisa is feeling is all to do with all the rads she has had over last few weeks but will make sure that her bloods are thoroughly checked tomorrow. She doesn’t know what caused the sickness though… she said could be just stomach reacting to all the tablets she is taking. See what results of bloods are. I personally think her red blood cell count is well down this time. Anyway Lisa made the effort this afternoon to come for a short ride along cliff top and I think it cheered her up even though she is still having quite a lot of pain and stiffness in shoulders and neck. I expect she is asleep by now with heat pad around her neck!
Love Sue x
Hi Zotam. Your nurse may well be right. Just looking up in my drugs guide and first on the list of side effects for morphine is “nausea and vimiting (particularly in initial stages), constipation and tiredness”. Perhaps Lisa can be given some anti-sickness medication to help if the nausea continues. Glad she managed to get out for a while and enjoy the sea views. Love Sarah
Rough week ended in a couple of rough days! After a good day on Monday yesterday she woke with agonizing pains in her neck and back of head. She was crying with the pain despite taking all painkillers. The nurse came at 11 yesterday to take her bloods ready for chemo today and was shocked at how she looked and rang the Onc … he arranged for her to go to hospital at 2.30. Dr didn’t like the way her hands were shaking … they have been doing this for a couple of weeks now … and said he wanted to keep her in. They suspected a brain bleed as she is on 90ml of Clexane a day. Lisa was distraught and beside herself as she was shown to a bed … it took everything I had to persuade her that it was the best thing to stay in. A CT was arranged within half an hour. Thank goodness no bleed but they had to wait for further results this morning. Nothing major showing in brain except a lot of fluid build up… breathe again! They didn’t scan neck though where most of the pain is. I went back in early this morning to see what was happening as she was having chemo/avastin today at home. Onc decided to let her go to have her chemo as she wasn’t in so much pain today so I got her back home for 11.30 for her chemo/avastin. They are now arranging an MRI to head and neck and also a bone scan. Most of pain seems to start at top of spine on what Lisa describes as ‘that knobbly bit at top of spine’ and it is very tender always and then it spreads out to shoulders, neck and back of head. So we now wait for phone call for MRI and bone scan. As Lisa says its just one thing after another. She says she can put up with anything apart from this awful pain which crushes her. When she gets this awful pain she seems to bloat up in her face too which makes me think it is fluid and inflammation but why only every now and again? The other thought from Drs is that it could be the chemo doing its job and the tumours reacting by becoming inflamed and swollen. Be pleased to get scans done now. She has accepted feeling awful and being tired and even aching in every joint but this pain is something she can’t take.
Hoping that tomorrow is better for her. I am shattered tonight … haven’t really been home much for 2 days.
Love Sue x
Dear Sue - I have been thinking of you both, especially as you had not posted for a couple of days. Now we know why. So sorry that Lisa has had another really rough couple of days and that the pain is still causing such problems. Whatever the underlying causes, surely the doctors/palliative care specialist can provide pain relief equal to the amount she is suffering. Do keep emphasising to the docs the amount of pain that she is in, it is too much to bear on top of everything else. Hope you will both have managed to get some sleep, I am sure you are totally shattered - hope someone is there to give you the TLC that you give Lisa. Thinking of you. Love Sarah x
Oh Sue - what a awful couple of days - it must be so hard on both of you. As Sarah says there must be some way to control this pain - but I know you want to get to the root cause and try and pin point why it happening.
As Sarah says look after yourself too.
Take care - Geraldine
I was reading a letter on here that said someone had a nerve damaged by rads which had caused dreadful pain on and off. When she goes for her scans I will mention that too.
Sue x
Sorry to hear that Lisa’s pain hasn’t improved.
It might have been one of my posts that mentioned nerve pain after rads. I lost the use of my first finger and middle finger and thumb as a nerve got trapped in rads scarred tissue and it was agony so probably worth a mention. there are some drugs that are better with nerve pain than others in my experience. I take amytyptylline for nerve pain which helps me sleep and helps the pain. garbepentin is another one that I tried but made me too sleepy but it did help with the pain.
Hope Lisa can get some relief.
kate
Thanks Kate.
She isn’t too bad today but then is drugged up and didn’t get up until lunchtime. She managed a little walk on local rec today but not far … neck and back of head really stiff. Will be pleased when MRI and bone scan is done.
Sue x