Julie, I'm so sorry. You must be beyond disappointed, I'm gutted for you, you poor thing. I really hope this next treatment is going to zap it for you.
Have you been offered further support? I'm going today to see a psychologist who is attached to the breast care clinic. I don't know if it will help but it's so much to get your head round.
My 6th cycle scan is next week, it is a scary time.
Thinking of you
Thought i'd see how everyone is doing??? This post seems to be getting further down the line & forgotten about!
Well, my news is not good.
I had results of my 6th cycle scan which has shown that the chemo had stopped working and the cancer in my liver has grown. They are now bigger than when I 1st started.
Im absolutely gutted as I was so badly hoping for there to be further shrinkage so I could have a chemo break.
I am to be fitted with a central line next week as my veins have had it and will be starting Vinorelbine the week after.
Im hoping and praying that this chemo works better for me and longer than the last combination did.
Im so scared it's untrue. Makes you realise not to get too complacent as you never know when your going to be kicked down.
I hope everyone else is having better luck than me?
X X X
Just to update you, I Saw Oncologist on Thursday and they have changed my regime to weekly taxol, no more Gem. They have admitted that they haven't a clue whats happening to me andI hadto have a lumbar puncture on Thursday. Now flat on my back as have a stiff neck and headache if I stand up. They are reducing my steroids as well. I feel like I am playing a part in the x files. I am hoping that everything will return back to normal now no gem.
Hope everyone is ok. Will be able to have better chats with you all once start feeling me. xx
How quickly did you all lose your hair on Gem/Tax, mine all came out on day 12!!!
Thanks for your comments.
UPDATE: Had Taxol/Gem last week and things getting worse, I take antihistamines morning and night. A Mcmillian nurse came round yest and said it was awful that the Oncologist wan't esting things, so she has arranged loads of tests though my GP, she said it sounds like adrenalin, metabolism gone wrong somewhere. My blood sugars are all over the place, every minute of the day is different. I feel like the x-files. Having Gem on Thursday and dreading it. Keep telling them everything is fast, I got the rash all over about 5 mins after having the Gem last week and that is with the big dose of antihistamine they give you!!!
My pulse goes to 103-130 whenI stand up after eating but its ok siting. Weird.
I have 3 hrs sleep a night if I am lucky cozmy body is so fast and yet I have no bags under my eyes its really weird. If I get through this I am going to write a book or something it is that freaky!!!!
Thanks for all your messages of support. I really appreciate it.
I hope everyone else is ok. Take care. Will update you after Thurdfay if I am ok.
Just to add my tuppence worth, my other half is on Tax/Gem on the 3 week cycle, 1st done and the 8 day follow up complete, with the next this wednesday. She actually spent 4 days in hospital following the 8th day top up with drastically low red blood cell count and a whole body rash, but we think that was because she was not given any steroid or anti-histamine before the top up. We think a lot of what comes out on the side effects is dwn to the fact that the first time through they just estimate what dosage will work on you, based on hight and weight and age (5'4, 10 stone, 30 years old for Heather) and then try to refine it after they have seen the effects,so hopefully they will be able to sort you out on the next round Mandy. I think it also depends on how agressive they can treat it, i.e. what your body can stand. Heathers Onc said at the start "Right you are young enough so I am going to make you fee considerbly worse to make you feel better", so hopefully that the apprach yor onc is taking
Sorry to ramble, good luck and god bless
thats really odd and I am not going to be much help to you...it does sound like something to do with steroids. I don't know this is any help but when I had my primary and took a specific anti sickness suppository - (I used to be really sick on FEC) I was in a very wierd way for 24 hours, strange thoughts, felt like everythiing was swirling around me...It soes sound like Kate is on the right track, something to do with the cocktail of drugs rather than taxol. But this is just guessing of course, I hope that you can find some help here.
Mandy - I'm gobsmacked as have no idea of what it must feel like for you right now. It's horrible it's the weekend as there are not the right doctors around etc.
Having been admitted on fri 26th sept under the neuro team as I lost bladder and bowel control 24 hrs after taxol. I had an emergency MRI at 10pm and they found no cord compression so that was a relief but gave no clue why it happened. Wasn't referred to the onc, dietician and palliative care team till the tuesday. Got forgotten about by chemo this thursday so had chemo fri 3rd so only 6 days between wekly tax this time. So know how it feels to be ignored by the medical team and left in pain as the liver and bone pain was worse in hospital and they were refusing to give me even what I used to take for pain and had considerably less oromorph so was very upset and miserable.
Because of my asthma, redness and blood counts, they'd reduced the taxol dose from cycle 5 but still feel so much better and the symptoms of secondaries are still improving - can swallow anything and breathing better. Liver pain now better but now on 60mg MST twice a day which has helped everything enormously.
Started to have bladder and bowel control problems from 5th cycle but worst was 6th cycle when lost bladder control completely and was just sitting at the time and also couldn't poo properly at all but then lost bowel control this friday (7t tax) for a few hours. Again - all OK now.
I had my 7th weekly taxol this friday 3rd as they forgot about me the day before!!! But as soon as I came home so about 2 hours after finishing taxol, I'd lost control of my bowels and bladder again. That only lasted till yesterday though and all in working order now.
The onc doesn't know why I'm having the bowel/bladder probs - could be the dex or tax or just generally being ill.
So are you taking dex - could it be that? I'm not sure they'd give you the taxol on thursday if you are still poorly. Do they give you IV piriton, ranitidine (stomach settler) and dex before the taxol? They can give you funny reactions to things.
Sorry - daughter in tears with french homework.
Thinking of you
I have been in hospital since Monday. This sounds mad what I am going to type but something really weird is going on. When I had my first Taxo/Gem, two days later I noticed that everything was going really fast around me and all of a sudden I could eat and no feel any pain in my tummy. As the week carried on it seemed to get worse. I then had my second Gem on Friday and woke up on Sat with a rash,had a antihistamine and felt normal again. Everything slowed down. On Sunday I lost sensation and senses. Ended up in A&E. I now have no reflexes, no emotions, can't cry, can''t feel my own body temp, can feel people touch me but no pain, and can't tell if I need a wee or a poo. The A&E drs were gobsmacked.
Whats worse is that they they just put me in a hosp bed and I had o wait to see Oncologist on Friday. THey are not listening to me. I am having some major allergic reaction to the chemo or steroids and to me chemicals are pumping round my CNS and brain at a fast pace. My husband an me did tests yest, when I touch food I got breathless, when I scratched my face it came up in seconds and disappeared in seconds coz my body is working so quickly healing. If |I kissed my husbands arm lots of times I start laughing and smiling then when I stop me face dropsand goes grey!!! i kow it sounds so bizaarre but I hope someone is experiencing the same thing but I doubt it,
THey think I am mad, I am sat here looking onthe internet trying to find things but I can't explain it myself.
THe worst is that they are giving me the chemo again on Thursday so if it is an allergic reaction god knows whats going to happen!
The only way I can describe it ist hat the chemicals have gone wrong somewhere, it is since the first chemo and got worse after the second,
I know what you mean Julie, my 6th round of chemo is coming up and while i'm really excited to be getting to the end of it I have no idea what happens next. It is very scary. I hadn't even thought of it as a break but I suppose you are right, there is bound to be more at some point.
I had very similar symptoms to you, I couldn't lie on my side when I was diagnosed with the secondaries. For ages I just thought i'd hurt my back through bad posture or something. I find now the level of pain varies and sometimes gets worse after the chemo. Do try not to worry too much, it sounds unlikely that anything new could develop so quickly I hope the onc is helpful on weds, I'll be thinking about you.
How are you doing Jakki? Well done you for getting through the court case, I read it was successful, that must be such a relief. Are your bloods getting better at the moment?
Ta taa for now
Jakki I hope your better???? You had us worried with your hospital visit.......and now Kate is not well?
I was in 3 weeks ago, seems we are all taking it in turns??!
I didn't get my day 8 chemo on Weds as my bloods were low. Must have been my Onc that jinxed me as he had said the week before that my bloods have been ok all way through my chemo's!
I seem to have developed a cough which im finding a bit worrying, also having probs sleeping on my right side again as the pains have started again (its the pains and not being able to sleep on my side that prompted me to see the Onc in the 1st place which led to me being diagnosed with the secondaries in liver & ribs)
Surely it cant be something to worry about can it? Not while im still on chemo?..........plus only had scans about 4 weeks ago which were ok. Can the cancer spread or start growing again whilst on chemo and so fast??????
Im seeing Onc next weds so will mention to him. He is planning to scan me again as it will be my 6th cycle and he is hoping to give me a chemo break.
I know a chemo break is what everyone dreams of but to be honest im sh*t scared to come off it. Im scared of the cancer growing again & spreading. I have been very very weepy lately and cry a few times every day and I have noticed it has been since my Onc discussed the chemo break with me. I feel like the chemo is my lifeline & if I come off it the cancer will get worse. Lets face it, by the time you have symptoms the cancer has got itself quite established hasn't it?
I hope this makes sense and im not just waffling on?!!! I know that I will be monitored but it will be every couple of months or so which I find petrifying to be left alone for so long.
Anyhow, gotta have the scans 1st to see how things stand at the moment.
I how everyone is ok???
Love to you all.
Hi Julie & Polly & Mandy
Just wondered how you all are?? Havent seen a posting from you in a little while so do let me know how your doing...
Kate is in hospital at the minute (you have probably read the thread)
Hi Kate & everyone,
Just a note from the Health & Wellbeing team: We are sorry to hear that the LWSBC programme was not how you had hoped it would be, we are glad to hear however that the YWF was more beneficial.
Just to reassure anyone who may be interested in coming along to a Living with Secondary Breast Cancer Programme. In general the course is a full day with a follow up day 6 weeks later. We would not generally use a telephone support conference call in place of the follow up day. This would only happen in the event that the majority of participants could not make the second day and we would then offer telephone support for the rest of the group.
We do try to give as much time as possible during the day for participants to get to know each other, including a long lunch and afternoon break.
Prior to confirming a place on the course a member of the Health & Wellbeing team will give you a call and talk with you in some detail about your requirements, your hopes and expectations for the event, and your diagnosis. With this information we will then talk you through the programme for the day and try to explore together with you, whether or not the programme may be beneficial for you. We will also let you know the age groups of the other participants attending so that you will feel as comfortable as possible should you decide to attend.
We do generally ask the consultants who are giving the medical session to talk about future developments, however their talk will be general and they will not be able to answer specific questions about individual diagnoses as they will not know your full medical history.
If you have any further concerns or queries please do not hesitate to give us a call on: 0845 077 1895 (London & South East) or 0845 077 1893 (North & East Midlands)
Health & Wellbeing Team
Hi Mandy and everyone else
Mandy - sorry to hear your cancer has spread. I don't think your spread is that odd (didn't Dina Rabinovitch have spread to her pancreas?) - they consider me odd as well as several of my friends due to the way it has spread. Hopefully, Mandy - the gem/taxol will work for you and then it depends what other options you have after this.
I did go to a Living with Secondaries course but as it was only a day and the follow up was reduced to a conference telephone call which I can't cope with, I ended up feeling disappointed so would like to do it again. I don't think anyone there used the forums and as it is such a short day you don't get the time to get to know each other. It was completely different to the Younger Women's course which was fantastic, as we had made contact with each other through the forums, it made getting to know each other much easier and of course we are still in contact - gobby gang.
I think if you all get on the Sheffield course, you'll get more out of it as you already 'know' each other through here and so you'll find it easier to engage with each other and with the speakers/facilitators and hopefully ask more questions. I found I was the only vocal one in the group and if I didn't ask a question then no-one else would which means people don't get the most of the day.
The other thing if you go is I would ask who the facilitator of the course is and ensure that the consultant who is speaking at the knows how far down the road you are with treatments as the one I went to said we had lots of options and we all said 'no - we've got that far so now what?' and he didn't know th answer. So I'd ask if the consultant can talk about future trials, new drugs etc.
I don't want to put you off at all but I thought if you knew how I found the course, it might be useful. Definately, start a thread about how is going and get to 'know' each other before you go and make sure the course leaders know what your requirements are from the day.
Still umming and ahhhing as would like to come and meet you all if you are all going but feel guilty as been on one before but as I said didn't get follow up day so feel I missed out.
I'm so sorry you are having this too and you have a 3 yr old to think about. I'm glad you've found this thread though, I've found it really helpful to have some contact with people on the same regime, especially for comparing side effects it is reassuring to know others get similar reactions. Please keep in touch, when do you have your first chemo?
How long ago was your first diagnosis? I do hope the chemo controls your mets, I was told the same that it's not a matter of cure now just of keeping control. I have to say, between treatments I feel so much better than I did before I started chemo. I go for my 5th one this week.
Jen- I hope I didn't sound rude saying I'm hoping for some young company at the sheffield event in November! 55 is not too old, I'll look forward to meeting you.
Jackie, I'm 34 too, I was first diagnosed at 30. I do hope the event will fit between your treatments it would be great to meet up. I hope your symptoms are easing off, the pain is so horrible though what you describe does sound familiar, my skin does feel weird after chemo and I tend to feel like I've been kicked in the ribs.
Julie, scary time! I hope you're ok now.
Kate - Hurray you're eating! Must be so good after your liquid diet.
The Sheffield event is for people with secondaries so it is for people of any age. Have you been to one of these already Kate?
As for facebook, I'm Kara, (polly's the dog I borrowed the name when i found my husband on match.com, it's stuck for internet stuff!) My picture is a computer drawn picture of the family my daughter did.
Take care everyone xx
I am back (Don't know if you remember me Daisypink!)
I think I am starting the chemo that this thread is called. I am having it two weeks on and one week off.
I have got mets in abdominal lymph glands and its caught my pancreas but they are not sure if there is a tumour in my pancreas or not yet as the CT scan is too fuzzy!!! Apparently I am a weid one and very unusual. Only me.
Been told now , no cure just try and see if anything can keep it under control.
The worst thing is they thought I had gallstones, as I couldn't tolerate fat. I still can't and I just want to comfort eat so quite weak at moment.
Just want to see my 3 year old start school next year and I will be happy. Not much to ask for I don't think.
Sorry, don't know what to put, feel a bit weirdxx
Jakki - I only see the result on the screen for my blood protein or albumin levels. I think it comes under liver function section. It should be 35 or over but if got liver problems then often lower as can't digest food properly. He was concerned as I'd lost 5kg in week and lost 5 points in albumin and getting anaemic again.
BTW everyone since having 4th taxol on thursday which he did n't want to give me - I can swallow again. Been enjoying lasagne, risotto, cheese and biscuits and a whole apple and chocolate hobnobs!!! What a chnage from pureed baby food and soup. Hope i can enjoy a meal out now. Also been better since stopped lansprazole and gone back on omeprazole for stomach protection. Was out till 1am at friends house this morning celebrating and only had chemo thursday so hope this swallowing stays until next thursday and blood levels improve now I can eat better. Was secretly hoping to miss next weeks taxol as out for day with hubby on saturday but now can swallow want to continue with weekly and hope breathing will improve.
.Was it here that someone was concerned about creatine levels - mine have been raised for quite a while but are higher when dehydrated. Usually get blood test by district nurse first thing in morning and not had chance to drink. This week I had a later blood test and drank well and creatine was normal so drink more- non alcohlic of course and see what happens.
If Sheffield is for secondaries then it is for any age but younger women the cut off is 45 I think could be younger. Quite tempted but did course before so shouldn't really go again if it stops others from going but would love to meet you all.
I have booked a place at Sheffield in Nov and I also have my treatment at Weston Park. Hope I'm not too old for you (55!). Melanie told me that they have to have a minimum of 5 to run the course and 12 is maximum.
I wish you all good luck with your treatments.
Jackie, im here and im ok!
There has been a few postings on here for me to read since I last came on so I cant make many comments as there is a fair bit to read & remember! Im sorry!
As long as everyone is doing ok?????
I was not very last week so ended up in hospital last Friday night. Had a temp of 38.2, was very headachey, shivery and just ached all over. It was gone 10pm when doc took my blood and said results would be a few hours so I was kept in to start intravenous antibiotics "just in case".
When bloods came back I wasnt neutrapenic & my temp had gone down so I was allowed home Sat night (I say night as I had waited all day for the doc to do his rounds.....he didnt come round til 8.30PM!!)
Doc has worried me a bit tho.... As I was leaving he muttered something about my blood results showed Creatinine and its nothing to worry about just drink plenty of water. I have googled it and it says that if Creatinine is found in your blood it means that your kidneys are not functioning properly. Well that has scared the bejeezus out of me......
Im seeing my Onc on Tues so will see if he says anything about my bloods.
Jackie, im 38 and was diagnosed last year (37) with my primary BC.
Im on facebook and my profile pic is of Garfield if anyone wants to find me?? 🐵
If you look for Breast Buddies most of us are on there.......
Catch you all soon.
X X X
Forgot to say..........
Kate - i dont know much about protein levels in your bloods.. which bit is that on your blood forms?? i will have to ask about mine..
Polly - i do go on facebook, although not every day, you will have to tell me what to look for if you can??
tatty by for now
Hi there! great to see you posting, glad you were able to tell them when you wanted your chemo, you cant let your treatment get in the way of things you really want to do. Have you drank any fortisips today? I will keep nagging you.. some of them are not very nice are they? I have also had prescriptions for Fortisips in the past too. I had the milkshakes but i know they do soups too and juices. Make sure you try and get as many as you can - even if you only drink half of one! I lost a lot of weight a few months back before my liver secondaries were diagnosed but now i am with you Polly - i am putting on weight with this chemo.. its getting me down now.. i wouldnt say I am eating more in fact if anything - i'm eating less. Your right polly that dogs are a good way of forcing you out in the fresh air but no fun when its cold and snowing eh? Kate, i know the feeling of exhaustion when you have just had your treatment and piriton - that makes me sleep most of the day when they give it to me.
I will work out my treatment and see if i can make the secondaries event in November, would be good to all meet. How old are we all then? hope you dont mind me asking.. I am 34, was diagnosed at 31.
My red face has gone today but i have a terrible red chest chest that has spread across to my other breast and into my armpit, it is worrying me as i am also in a lot of pain today, i have an area on my spine that feels like its bruised and its very painful. Ive got my heatpad on it right now and i have taken my oramorph and other painkillers but they dont seem to be working. My tummy is really tender, My legs are like lead weights and my skin on them feels stretched - sounds weird but thats what it feels like.. I am hoping that its just my GCSF injection that i am having after chemo...havent felt like this before though..
Julie - are you ok?? you havent posted on here since the end of August, do let us know how you are doing..
Well going to go now and have something to eat.. Kate - dont forget - drink your fortisips!!!!
Take Care and hope we can meet later on in the year eh?
lots of love Jak
You are incredibly brave, definitely the right thing to make the chemo fit round your events, it sounds like you've got your priorities right! The macmillan nurse got me a prescription for fortisips but amazingly I seem to be putting on weight during chemo. I guess because my eating has stayed fine, probably less healthy than before, but I'm fairly inactive.
As for the event in Sheffield, I know they provide hotel accomodation for anyone from out of town. I went to one of the events for younger women when I had chemo the first time, the hotel was lovely and the whole thing was really well run. I do hope I can persuade some of you to come!
Rest up well
Jak - glad you got your chemo and they've cut the dose.
My bloods all low this week and he didn't really want me too have chemo this week. I'd rather have it today which I did as on the 2oth we are going to a motor racing event and would like to feel well for that so happy to mss next week's dose out. Iron levels dropped from 110 to 98 and blood protein levels from 31 to 28. Should be at least 35 and have been hovering around 31 -33 for last 6 months but worse of all lost 5kg in a week. Knew I had as my belt is now on 5th hole instead of 3rd. Got to keep a food cchart and have more fortisips so keep reminding/nagging me. Getting scared now about my protein levels as it means my body is now eating itself so got to force more food down.
Wold have liked a dog but as we both worked felt it wasn't fair and the house is too small for our twins and little boy anyway. My twins are boy/girl and are 11. Youngest son is 8.
I won't be going to event in Sheffield - too far away but quite tempting to sign up if you all going and then I could stay with my friend who lives that way!!
Exhausted from chemo today and the piriton.
Love to you all
How great that you got your chemo! I do hope your bloods pick up soon. I have 2 weeks on and 1 week off, 3 weeks on must have been quite tough, I do hope the new regime is ok for you.
About the secondaries day there is a 'sticky' thread at the top of the forum which has the email address and phone number. I really fancy going but when Melanie who is organising it said she couldn't guarantee there will be any other younger women I thought it might be a bit disheartening to go if everyone's going to be a lot older than me.
I do have twin girls. They are pretty gorgeous. They do make me laugh with the funny things they come out with. Do you go on facebook? I have some pictures on there.
As for dogs, Thornton sounds lovely. Polly is a black and tan cavalier king charles spaniel and Daisy is mostly collie. Dogs are great for forcing you to have a bit of fresh air and exercise when you least feel like it don't you think?
I hope you're feeling ok today.
Hi Polly & Julie & Kate!
Had my chemo yesterday and i feel ok today apart from i have the red glow to my face, also over my chest and arms today! they are cutting my dose this time as they said its affecting my bloods too much and want me to be able to continue with the chemo so they have no choice but to cut it to reduce the dose. Instead of my having 3 weeeks on and 1 week off, i will only get 2 weeks of chemo and 1 week off.
I asked about my scan and they said i wont get one until the end of treatment unless my LFT's are showing abnormal to warrant one.
My bloods were still quite low this week but ok for chemo and the doc said my LFT was showing as normal so he was very pleased and said it appears that the chemo is working.
polly i havent seen the advertisement for the secondaries event - i'll have a look and see what i think...
Julie/ kate - hope you are both ok..
Polly.. i notice you mention you have girls who will be 8 soon.. have you twins?? Also you have mentioned dogs on a previous reply.. what type have you got and whats thier names?? I have a dog too! I love him to bits - he's a chocolate labrador called Thornton.
Right i'm off to bed.. to get myself comfy for Desperate Housewives..
I have signed up for the event on living with secondaries in Sheffield in November, just wondered if any of you will be able to go, it would be great to meet up there and I think it will be helpful.
Hope you're ok
It's good to read your message, I'm glad you've been on holiday it sounds like you've had to put up with being really poorly. How shocking that they got your dose wrong, I can't believe it!
I had some rads on my back before which really helped, I'm just a bit worried that I'm aching in my shoulders and hips at the moment. Trying not to worry about it I will wait and mention it when I see the consultant a week on tuesday, I've got the gem top up on weds this week, I'd rather not go to the hospital any more than I have to.
I can hardly believe it's the last day of the school hols today, I think the girls have actually been busier than usual as I've been a bit more organised as I was so worried they would miss out on having fun with me being poorly. They go into year 3 tomorrow, it seems so grown up, they'll be 8 in October, blimey i wish they didn't have this to deal with.
Hope you ok too Jak and Julie
Now I'm back from my holidays and short breaks thought I'd join in again even though just having taxol and not the gem. (Had gem with carboplatin).
I always go very red with steroids and my face puffs up and goes all hairy but I suppose now I've had my second weekly taxol, this won't be a problem soon!!!
I used to go very red when I had taxotere and the taxol seems to do the same but to a lesser extent as having smaller dose.
Polly - it's good news about your major organs and definately push for rads to your back. I've had rads to my back and it is only now that I realise how much pain I was continually in. Rads does make the pain temporarily worse - to the extent I wondered if I'd done the right thing but 3 months down the line it was really worth it. I have a very interesting coloured back from my various rads to various parts of my back but who cares- if it doesn't hurt, I'm not bothered.
Jakki - so sorry to hear you didn't get your treatment again. It must b so frustrating. As far as I'm aware the GCSF only works on the wbc and not the platelets - JaneRA had low platelets on gem - it seems to be a common and frustrating problem. Sorry to hear your stomach is still so bloated - for some reason I thought it had got a bit better - my memory is so poor.
Well after feeling so ill and it spoiling my holiday after my first weeky taxol, I found out on thursday that they had given me 9% too higher dose as the reg used an old weight and my old height. I've shrunk by 3 cm due to the bony ones in the vertebra - I kept thinking everybody looked taller and now I know they are!!
I feel so much better this time after getting the correct dose. I've been out and about and not had the bad stomach cramps or diarrhoea. Know as time goes on, the weekly doses will catch up with me but what a relief to feel I can get out of bed and be vaguely human. I only managed 1 good day in the week after I had the first dose and was glad I was away so missed the second dose as it meant I could go away and meet my family and have a good time.
Will write and complain as if this overdose had been on the 3 weekly dose goodness knows what sort of problem it could have caused but being weekly meant it was within a safe limit. The reg felt the lump under my arm was smaller but my breathing and swallowing are no better but the liver pain is better and the tummy swelling although my liver function tests and bilirubin are still not normal. I didn't dare ask how much they were out by but for the first time in about a year I'm not anaemic.
All the best everyone
Hi Polly and Julie
Just thought i would let you know i'm feeling fine thanks since you were asking and catch up...
Polly your results were great, like Julie said, it seems to be working on the organs and thats the most crucial, I do hope they will give you some rads to your back. i have back ache at the minute, mine is at the very bottom, where is yours? anyway.. going back to the rads.. I had some to my sternum for bone mets and it worked wonders..persist and tell them how much pain you are in so you get some.
Julie - yes, i think it is the Gem that is knocking my platelets down, i am due to go back to see the doc on the 4th Sept and then have my chemo on the following tuesday (9th), my dates are all out now.. i havent got a date yet for my scan because they wanted to do 3 full cycles and i havent had that yet. I suppose they will organise one when i go next week to see the Doc.
I think we are all getting the red face with this regime... i think it may be steroid related though.. dexamethasone always makes my face red... looks like ive sat out in the sun for too long.. as for the bloated stomach..... i cannot fit in any of my clothes... i live in tracky bottoms around the house so your not alone there Polly. I look about 6 months pregnant some days.. ha ha
well best go... hope your ok and heres to further shrinkage...
The redness has worn off, hope yours has too. Feeling bit yuck with rubbish taste but overall not bad, had a walk with the dogs this morning.
Do you get really bloated belly too? I am reduced to wearing tracky bottoms at all times, comfy but I can't believe how big I look sometimes.
How are you feeling? Hope you're ok.
Polly, I know that your results were mixed but as the treatment is working on your major organs thats brilliant news.
I will keep my fingers crossed that they allow the rads to your back. I know there is nothing worse and miserable than backache.
I hope you had a celebration drink or gave yourself a a bit of a treat after getting the good results?
Here's to further shrinkage eh?! X
I had my chemo on weds and too have the hot red flushed cheeks. They are so red and tight that it feels like the blood vessels are gonna burst! A bit painful to touch too. Ah well, at least its making me look very very healthy!! 🐵
Im sorry that you didnt get your chemo again, its really giving your platelets a good battering isnt it?
Its probably the Gem thats causing the low platelets isnt it? Im sure the Taxol will be doing you some good so try not to worry.
When are you due your next chemo? I think we have ours about the same time but yours is a day before mine?
(I had my Tax/Gem on weds and am due my Gem next weds)
Have you been given any dates yet for your scan?
I am keeping everything that I can possibly cross crossed for you.
Hope to hear from you both soon.
Thanks for checking up on me. The scan results were a bit mixed. The mets in my lungs, chest lymph nodes, liver and kidneys have all shrunk and there are no new ones, but there are some new ones in the bones of my back which I suppose explains the back ache.
Typically my consultant was away this week and I heard this from a registrar I haven't met before. Overall it seems positive as i think the organs are the most crucial to be improving. Perhaps I'll be able to have some more radio on my back, this really helped before.
I had chemo yesterday, my bloods have picked up so the battle continues. I seem to be really red in the face today but am feeeling ok. The girls stayed with my Mum last night so I'm enjoying sitting in bed with the laptop.
I'm sorry your blood still not strong enough for the chemo, try to enjoy the break and do something nice for yourself. It's hard but I know a week off doesn't make any difference in the long run.
Take care Jak,
Hope you 0K too Julie
Just wondered if you had any news Polly on your scan results??.. do lets us know.. i hope all is well....
I didnt get my chemo on tuesday as my platelets were only 85. they have to be above 100 for treatment... even though i have been getting GCSF injections to boost my bloods...
oh well.. glad of the break from chemo but worried at the same time.. need to fight this evil disease!
Julie - hope your well too... your quiet...
Hi there.. just wanted to wish you well for your scan results tomorrow... i will keep everything crossed for you.. lets hope the way you feel is a good indicator on your results....
Please let us know how you get on... i will be thinking of you..
only me left then to find out about mine when i eventually have my scan.. they say these things come in 3's.... well.. i hope so!
Julie - hope you are ok...
take care chickie pies
So nice to read some good news on here! Glad you're both doing ok, how fab that your scan results were positive!
I too had a CT scan last week as I've had 3 lots of chemo, I get the results tomorrow so fingers crossed. I'm fairly sure they'll be ok as I've been feeling really well these last few days. I had a couple of lumps on my head which have completely gone and I've just about stopped coughing, it was driving me mad before so I think something good is happening. If all's ok it's 'ting ting' round 4 on wednesday!
I've not needed a transfusion, I'm taking iron even though I was told it won't help and feel ok I have more energy than before.
I'm in Sheffield, I have my treatment at Weston Park so we are pretty close I think.
It's great to read your updates on here, so nice to know you 2 are going through the same thing, well not nice, I wouldn't wish this on anyone but you know what I mean!
Lots of love, will let you know about my scan xx
Thanks for posting about your results so fast.... i am so pleased for you!!!!!! what great news!!! i bet you are so relieved now.. i know what you mean by feeling scared before going for your results... its the worst feeling in the world - i find.. my legs always feel like they are going to buckle underneath me when they call my name out.. it made it worse for you with the 1 hour and 40minute wait before.... thats torture... anyway.. well worth the wait eh??
make sure you celebrate and raise a glass on your week off!!!!
Lets hope this regime is the one to kick mine and polly's cancer's butt too!!
So pleased for you again julie..
Jackie, im so pleased that you are feeling better. I keep logging on here to see if you have put any updates on.
I know you didnt want your hair to fall out and thats why you were using the cap, but as you say its not the end of the world.
As long as the treatment works its a small price to pay......well thats what I tell myself anyway! 🐵
I seem to have different side effects every time I have my chemo! I think its the Gem thats doing it?
Firstly it was the intense itchy rash on my legs, then the itchy painful spots on my head. This time round its a spotty head (again), spots on my face, chest and back. But if thats as bad as it gets well thats fine by me.
I had the scan as ive now had 3 cycles of chemo and am half way through so it was to see if its working for me.
The head scan was due to me having a lot of headaches lately, I was really worried that I had brain mets.
I went for my results yesterday. Saying I was scared to death is an understatement.
All morning I was shaking, had bad butterflies and felt sick. Didnt help either that clinic was running late as usual, so I was sat there for 1 hour and 40 minutes pooping myself.
Well, eventually got my results.
Head scan was ok, no sign of spread to the brain (PHEW!), body scan was ok, no sign of spread elsewhere.
My liver is looking better. The cancer has slightly shrunk. Not drastically but its shrunk non the less so its heading in the right direction. My rib is looking the same but Onc said that was expected as its the bone.
I felt like I was going to pass out with relief. That was probably one of the scariest times I have ever experienced.
No doubt I will feel like that again when I have my next scan in 3 months (and every other 3 months there after?!)
So, we carry on as we are with the chemo.
Polly, I hope things are going ok for you?.........let us know how you are?
Hi julie & polly
I had my cycle 3 - day 8 treatment on tuesday - my dates are all over now as i had to have 2 weeks off to wait for my bloods to recover on my last cycle. I dont feel too bad so far, they have given me GCSF injections now to support my bloods and so far ive been ok. Ive had no more falls.. think i was just very clumsy, over fatigued and my bloods were low?
My hair is still thinning although i can disguise the fact its falling out when i'm styling it, i dont think its going to last out for the whole of the treatment.. we'll see. Not the end of the world. Just really want this treatment to work.
Julie - why have you had to have a scan of your head and body scan? Are you in pain or having any symptoms? Please let us know how you get on - i am thinking of you.
polly - sounds like you are julie live near to each other, isn't Holmfirth where they film last of the summer wine? (I live in Stafford by the way) did you have to have the blood transfusion in the end?
well.. i best go and get up out of bed.. things to do..
speak to you later.. take care
Hiya Jackie & Polly,
How are you both?
Jackie, im sorry to hear that you had not been too well. I hope your feeling better and have recovered from the falling incidents? Your on your chemo break this week aren't you? (I can't remember if you have your break the same week as I do?)
Polly, im glad to hear that you have got the anti sickness drugs and that you didnt suffer this time round. Yayyyyy!!
(ps.......do you mind me asking where abouts you live? With you mentioning you went to a gig in Holmfirth, im thinking you must be somewhere (ish) near me? Im in Bradford)
I had a head & body ct scan today. Have an appoinment with Onc tomorrow for the results. Im really really pooping myself. I am hoping to god that for once during this whole cancer cr*p I have some kind of good news.
Let me know how you are both getting on?
I'm so sorry it sounds like you're having a rubbish time, I'm thinking of you and really hope you are feeling better soon.
Luckily I was given antisickness stuff before and after the gem this time so hurray i wasn't sick! it's been much easier to cope with this time although my haemaglobin is low. They suggested a transfusion but i'm feeling ok so haven't had one for the time being.
I even got out to a gig with my husband last night. We went to see Richard Hawley in Holmfirth and I was shocked and stunned when a beautiful song was dedicated to us! I couldn't stop crying it was so lovely. my husband had been swapping messages with Richard on his forum, such a star with such a warm heart, I'm a bigger fan than ever now. Treats are the best for coping with this I find!
Feel strong Jackie,
How are you Julie!
Hi Polly & Julie
Just to let you know, i didnt get my chemo on Tuesday, this was because my bloods were not quite right still and i had been feeling poorly for most of the week so they decided to skip this week and start a new cycle with possible GCSF injections.
Not sure if the cold cap is working now.. my hair seems to be coming out more and more this week.. feels thinner to me.. Ive fallen over 3 times this week too ( dont know how - just lost my balance) so i feel really bruised.. feel like ive been to the gym when you havent been for years.. i ache... i fell on both sides of my body and put my arms out to save me so they feel really pulled.. especially the surgery side..
polly hope you are not feeling sick after your Gemcitibine.. let us know...
Julie.. how are you doing??
I saw doc today and they said gem doesn't normally cause sickness so they don't automatically prescribe anything but of course i insisted that i must have it next time. I find it's all bearable if they get the anti sickness right.
My hair is very short but coming out really fast now, especially in the shower, it's gross so I fancy going for a total shave. It doesn't bother me being bald but I'm hoping all my eye lashes and brows don't go completely. My sister got some lovely spotty scarves for me and my husband chose a couple of lovely hats in monsoon.
I lost my hair when i had fec 3 years ago. You're brave going for the cold cap, I tried it first time round at doc's insistence but it felt like a form of torture.
If this is your third time on chemo has you cancer come back 3 times? My chemo seems to be working but I'm so scared of it coming back again, my daughters are only 7.
It's my 3rd chemo tomorrow, hopefully it might be a bit quicker than the last one, i didn't get home till nearly midnight! After having a bad reaction the first time I was scared to let them speed it up but I hadn't realised just how slow it was going.
Hope you ok and Julie
Hi Julie & Polly
Sorry i should of been on and posted before now.. but had a really busy week...
I didnt get my chemo this week, my bloods were too low.. I'm neutropenic. My Neutrophils were 0.60 and my white cells were 1.4 so they wouldnt give me the chemo. They said to keep an eye on my temperature and to let them know if it went above 38 degrees. i have to go back tomorrow to have my bloods re tested again. They said i may have some GCSF injections with this chemo to boost my counts as it will no doubt happen again as this is the 2nd time on this chemo regime. I did mention my chest infection to the doctor and the nose bleeds, he said the nose bleeds were normal and to keep an eye on them if they get worse to let them know, as for the chest infection, he listened to my chest and said it didnt sound as if it was on my chest so he wasnt worried...
Julie - Those red spots sound nasty.. i have read that these chemos can give you a rash, hope they clear up fast. I totally get where you are coming from with regards to being scared waiting for scan results. I have had so many.. i physically tremble when i sit there waiting for mine. Its just horrid, i'm one of these people who cant take bad news and i cry everytime my oncologist gives me bad news. so i'm the same... i'm afraid.. i really really want this chemo to work for me and of course you. I will keep everything crossed for us both. Do let me know how you get on as you will have yours before me.
Polly - sorry to hear that you have had to shave your hair off. Its awful isnt it? Have you lost your hair before with any other chemos? Have you got a wig or any head scarfs? I lost my hair twice with two other chemos i had, so i didnt fancy a third time so i opted for the cold cap this time and (touchwood) its working, i havent lost my hair, it thins slightly a couple of days after my infusion but after that it seems to stop. Hope you manage to get the anti sickness tablets sorted on wednesday.
anyway... i will go now.. i'll keep you posted on my bloods tomorrow.... keep me posted on you too...
Thanks for letting me know about your anti-sickness stuff, I will feel empowered demanding better treatment knowing it is what others have. I will be going for my 3rd cycle next wednesday. It does feel good to enjoy the week off when it is all cleared out of the system.
I am just starting to lose my hair so have shaved it off, how is yours doing? The red spots sound annoying are they better now?
How are you doing? Did you mention your chest infection & nose bleeds to doc?
I hope your ok now?
Im not feeling too bad thanks. I only seem to feel a bit ill on days 3 & 4 after my Taxol combo.
Ive found that this time round I haven't got the terribly itchy legs like last time, this time ive got an itchy head which has come out in loads of red spots that are quite painful. I thought it was follicalitis as the syptoms sounded the same when I googled it. Saw a doc when I went for my Gem last week and he said its just a reaction to the chemo & gave me some E45 cream & piriton tablets. Gotta admit its calmed down but that could be because the chemo is filtering out of my system?????? Will see what happens with next weeks chemo......
So, im determined to enjoy my weeks break from the dreaded stuff!
This will be my 3rd cycle of this combo and my Onc had said they will scan me after my 3rd to see if its working for me. Im pooping myself I can tell you!........im scared to death of finding out. I will be gutted if its not working.....
Polly, like Jackie I have anti sickness stuff (and steroid) given to me via I.V just before im given my Gemcitabine top up, plus I have a pack of tablets at home to take if and when I feel nauseous.
They don't want people to suffer during treatment so mention it to your medical team and they should give you something for it.
Let me know how you both are getting on?
Julie X X
Thanks so much for the reply I will definitely insist on more help next time.
Luckily I'm feeling much better now and enjoying a week away with my family.
hope you are feeling better now, sorry to hear you felt unwell after your last chemo.
i havent felt too bad, think ive picked up a bit of a chest infection as i'm coughing a bit and feels like i have something on my chest. I'm also getting nosebleeds everyday and they happen 4-5 times a day.
I will have to tell them tomorrow when i see the doctor after having my bloods done.
Sorry to hear you have a funeral to go to this week
let me know hw you get on with chemo
Hi polly 495
I have anti sickness drugs given to me IV before they give me the bag of gemcitbine. I have ondansetron. I am usually sent home with 3 days worth of tablets too .
I would not put up with feeling sick.. no one should have to suffer.
Tell them how poorly you were last time and demand they give them to you. dont take no for an answer.
hope you go on ok
I'm on this combination of chemo too. I just wanted to ask, do you have anti sickness drugs before the day 8 top up of gemcitabine?
I was told they weren't necessary then was horrendously ill, it was worse than the initial treatment. Obviously I will demand them next time but it would be interesting to know if most people have them?
Good to hear from you, you had me worried......
Great this chemo milarkey innit?! NOT! I started to not feel well yesterday. Same symptoms as when I was poorly 3 weeks ago (3rd day from chemo). Fluey, headachey, very fast heartrate, highish temp, twinges in my joints and in my ribcage. I felt like I didnt know what to or where to put myself.
Went to bed early last night but didnt sleep too well. Not feeling 100% today. Ive had my pj's & dressing gown on all day.
Hopefully this will only last a couple of days as it did last time?
Im supposed to have my next Gem on Weds but delayed it by a day as its my OH's grandads funeral (he died last weekend), so will get my bloods done on weds morn rather than tues.
I hope you start feeling better soon........keep smiling chuck. X X X X
Hi Ya Jules
i'm doing ok, been really tired though but apart from that just the usual aches and pains and shakes.. i have got the fuzzy head like a hangover, it horrible..
been drinking lots of squash to try and flush it out of my system again...
thanks for asking about me.. ive got more bloods again on monday and chemo on tuesday.. is that the same for you??
speak to you later