Hi Mandy,
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.
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.
Kate
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)
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.
Hi,
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?
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!
Mandy
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,
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
Kate
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.
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
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 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.
Mandy xxx
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!!!
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?
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
xx