Not sure whether should post this here, but I had 3 x Taxol before onc changed regime to letrozole. 2 weeks after last chemo cycle ended (ie 5 weeks after last dose) developed high fever ( up to 39.9)& violent vomiting prob due to uti.
Should I have phoned my onc hotline (I have a card too)? It didn't orrur to me as I had finished chemo for the time being.
Evie2007, Dahlia, Jansman - I had 4 x EC then 4 x taxol with gemcitabine as part of a trial and found it very do-able (but then I haven't any children and never suffered sickness with it - phew!). It turned out I had 2 tumours that originally showed as one 7.5cm x 5.5cm. Grade 3 and a mixture of dcis and idc, 12/22 nodes, vascular invasion and stage 4 as there was some spread to spine and ribs. My onc has been doing the job for many years and as long as I was willing and not suffering, prepared to throw it all at me. It was followed up with 15 high dose rads.
I probably shouldn't put this here but hope it may provide some resurrance - I'm getting more side effects from the hormone treatment than I ever had from the chemo and rads but trying to be positive and work on the basis it means it's all working !
Good luck, Liz
jansman i am having 8 FEC followed by 18 sessions of radiotherapy regardless of margins being 2cm plus and clear nodes.
Dont mind me..am just bit miserable at having to have so much treatment and yes i do know i have grade 3 cancer but i still feel its too much! grumpy huh?
Thank you so much for that - very reassuring.
We think she has got away without radiotherapy. Due to the wide clear margin, etc., the onc is not prescribing rads. One node had "some" extranodal spread, but I have looked at several studies of this and it does not correspond to any increased probability of local recurrence.
Don't worry, I was 48 and had 4 x FEC and then 4 x Tax, I'd 2 tumours, 100% lymph nodes, vascular invasion, Stage 3, Grade 3 - they will give her the gold standard.
It is eminently do-able. Hopefully she doesn't have to have radiotherapy as well, that one is the horror.
You didn't say what chemo regimen you are having. I have been concerned that my wife's (48) chemo (EC*4 then Tax*4) seems to be different to most other people's. As far as I can see, the most common regimen for people with similar diagnosis to hers seems to be FEC*3 then Tax*3, and I can't find any real reason for this difference. She has been on methotrexate long term for another condition, but as far as I can tell (and I have searched a lot) that shouldn't make this difference. Her Dx is grade 3 IDC, 2.5cm, 2/9 nodes, wide (1.7cm) margins at Mx, no vascular invasion.
We didn't manage to ask the onc at the first session, but hope to ask at the next one, just to put minds at rest at least.
Thanks for replying. I dont want 8 but i feel if i refuse and it reoccurs well its just my fault! ive looked and looked on web and there is nothing supporting 8 over 6.
Its my age i think! She said i was young enough to cope with 8..another cracking reason to give me 8 i dont think!
Part of me does think who am i to question the specialists but with a 1 and a 2 yr old at home, repeated chemo is taking its toll on me.
Evie - must admit i have also noticed that alot of people seem to have 6 cycles, i had 8 before surgery but that is because IBC is such an aggressive form of cancer...
Could you ask for a second opinion ? i have heard people saying that you are allowed to and supposedly no questions asked... if they are stubborn about it i am sure the PALS people at your hospital could help...
Hope you are able to get something sorted...
Hi my very experienced oncologist, who is also a great scirntist/proffessor, told me that there was no evidence to show extra benefits from 8 and that he felt after 6 people had had enough! Just another viewpoint, but i agree with your comment - on what evidence are you basing this plan??
Horrid isnt it having to make decisions when we have doubrs. Good luck
The article isnt very well written but it made me think more about my situation.
I have grade 3 BC,2.0mm, ER positive with clear nodes and no sign of cancer else where. My ONC still wants me to have 8 cycles of chemo.
Whilst i totally understand i am young-32-the other ONC's in the department seem to do 6 cycles. When i questioned this she said it was her preference. No reassurance of reduced reoccurance with 8 or any research stuff to support it- just what she prefers.
It doesnt resssure me at ALL as i feel 8 is over the top in my situation regardless of my age and i worry the chemo will actually do me some harm from all these cycles. I personally think she is giving me the max because she is new ( my BCN told me she is "finfing her feet still" ) and doesnt have the experience to treat me as an individual.
Just my thoughts!
I don't think that either of the articles are particularly coherent, but then again I don't expect a journalist to understand the complexities of cancer and chemotherapy purely on the basis of a press release.
I found the articles misleading on several counts and a bit sensationalist in their straplines. Firstly they seem to imply that cancer patients are oblivious to the risks involved with having chemotherapy. From my own experiences that is not the case. I have signed consent forms prior to starting every different regime. Each document has listed the potentially fatal and non-fatal side effects of each treatment. None of these documents have been the same. I remember clearly being told that I had a 15% chance of developing neutropaenic sepsis, and my jaw dropping when told of a 0.1% chance of dying with my first chemo combo. Typically my neutrophils dropped to 0.04 on my first cycle and I was whisked into isolation at my own hospital by my oncology team. Funnily, the thought that kept running through my head was the statistics for death. I had never considered how dangerous not having an immune system could be and how unknowingly I had eaten lots of food that day which was riddled with bacteria which could have proved fatal.
Secondly, these articles seem to placing the blame on A&E's door for the deaths without wanting to acknowledge that there are risks with all types of medication, chemotherapy included. It's not an aspirin - it's a highly toxic combination of chemicals which are going to kill all fast growing cells in your body. Some regimes are known to be harder on the heart which is why sometimes they may not be given to certain patients in the first instance. However, it does seem logical to me that there would be a higher incidence of complications in the first thirty days as our bodies cope with a hammering of our bone marrow & it is unknown how each individual will respond.
If A&E departments don't have oncology expertise then of course they should have guidelines and training on how to deal efficiently with any patient receiving chemotherapy and attempt to identify the problem & prevent fatalities. There are also other protocols to be observed when someone is at risk of neutropenia (eg avoid internal examinations as they can introduce bacteria to your body when your immune system is low).
With regards to A&E often diagnosing cancer in patients who have "ignored" symptoms, it's a bit much to expect us to be au fait with all the different symptoms of each type of cancer - many symptoms which may appear to be fairly innocuous. To my knowledge there isn't currently any nationwide public information campaign telling us what to look out for. All I see on the tv and billboards is that cancer affects 1 in 3. Many people I know (myself included) are dismissed by their GPs when they report symptoms because we are too young or don't fit the demographics for certain cancers. So, whilst I agree that individuals could/should listen more to their bodies, especially if they had a checklist of some "common" warning signs to work with, similarly GPs and/or consultants need to listen when patients report symptoms that are unusual for them and follow through with testing.
Finally, it should be standard practice nationwide for patients to have an emergency card to keep on them. Like jansman's wife, I have a credit card sized NHS Cytotoxic Chemotherapy card with information for patients about which symptoms require urgent attention, plus information on the reverse for healthcare professionals warning that patients are at risk of neutropaenic sepsis, instructions to take full blood counts and cultures, to treat frebrile netropenic patients with IV antibiotics, plus the contact numbers of my oncology team. My family are aware that this card is in my purse and they have photocopies too.
Apologies if I've rambled. Hope everyone on chemotherapy can be "complications"-free!
My wife is being treated at the Christie hospital, and they have given her a card with a hotline number in large type to phone if there is any problem. They said to ring it immediately if she has a temperature over 37C. It also has key information on about symptoms, etc., and I think also information for hospital staff on how to proceed. They really (and rightly) make a big deal of this.
my onc and chemo nurses have said if i feel ill i must phone the ward, gp or nhs24 if out of hours and tell them im on chemo feel ill and have a temp and i would get seen immediately.... not at the hospital with a and e as it doesnt have cancer services based there.
surely most chemo units would be advising patients to get in touch with them if they were unwell?
When my onc told me that if I had chemo AND herceptin it would make a 3% difference, he said at the same time, that 1% of people die from the chemo alone.
I had an Oncology appointment today and was discussing the way forward with my Onc as I have extensive spread in the bones, lungs, liver and now today have found out that the mysentary area around my stomach is infected by disease also. Anyway, whilst discussing threatment options, my Onc said that she could not consider giving me chemo at this stage as I'm too ill and my bloods are not up to scratch. She then went on to mention a study that said chemo could be killing people within 30 days before the disease does and she did not want to put me in that situation. She said that often we use chemo too much.
Having now read the article in the Times, and taking on board what my Onc said, I feel that the articles are quite misleading. So, is the article saying that there should be a greater knowledge within the A&E depts regarding the side effects of chemo and that someone who presents themselves at A&E and who has recently had chemo and has a high temperature should be treated with anti-biotics straightaway because I assume that they are neutropenic?
Or, is the article trying to say that people are dying sooner than they should because they are being given chemo when in fact their bodies can't take it and they would survive longer than the 30 days if they had not had chemo? Which I believe is what my Onc was telling me today.
Sorry, but I suppose I've just confused the issue even more, but having just spoken with my Onc today I assume this is what she is talking about.
I remember last year seeing my oncologist just before starting chemotherapy. She warned me very strongly about the importance of how dangerous infections and other side effects can be from the chemo and that I mustn't ignore ANY signs of infection or heart problems. I should get to a hospital ASAP in the event of any of these problems. She had just lost a patient from chemo complications and did not want the same to happen to me. This stuck in my mind the whole time and taught me to treat chemotherapy as a regime that could help me but had the potential to kill me if certain symptoms were ignored. I have read both articles and as mentioned the times article is definately the most coherent.Thanks for bringing to the forum everyone.
I think the Telegraph article is very badly written. It seems as though the writer doesn't actually understand what they are writing about.
The Times has a much better version of the story:
It seems to be discussing 2 things... the need for a&e to realise how important it is if chemo patients arrive with high temps or infections etc due to our low immune system... Perhaps the figure is higher than we expect as it is more of a problem with eldery patients or certain other types of cancer?
But then also goes on about them needing tp realise someone has undiagnosed cancer and have ended up in a&e as they are now very sick... But obviously those people can not be on chemo yet...
Here is a link to the full article...
Hi Nikki, I had a friend, with bc, who died from the effects of one particular chemo..the side effects brought on cardiac arrest.
One in four sounds surprisingly high, to me.
After posting this and seeing it in the theads I have realised that the title may upset some people, so so sorry, just didn't think as tend to be quite black and white.
If an admin reads this, please can you change it to the title of the newspaper article.
Sorry again for upsetting anyone
Spotted this peice in the paper from Saturday, has anyone got a clue what it's about? Doesn't make sense to me.
"Specialist Cancer Care In Casualty"
"Every hospital casualty department in England could be given access to a cancer specialist to try and reduce deaths uneccessarily hastened by chemotherapy. A report had claimed that more than one in four patients could be dying early because of the treatment. Prof Mike Richards, the Governments cancer tsar, urged hospitals to adopt the guidelines from the National Chemotherapy Advisory Group"
Does it mean people are dying due to complications the casualty departments arn't spotting?? Although somewhat vague, it's not exactly comforting.