To have the op or try alternative

Sounds like a really scary incident The trouble is you never know whether a side effect is so-called normal or whether an emergency is happening to you. Makes you feel that it's a big call to go to A&E. I didn't have anything like your experience so I can't help there. However, I do take paracetamol all day every day for arthritis and have had no ill effects so far (been taking it about 2 years). My liver numbers are perfectly normal. Both doctors and nurses have told me that it's more effective if you take it continuously. Of course there's a maximum dose per day that mustn't be exceeded under any circumstances or else you get bad liver effects. It doesn't actually take that many paracetamol tablets to kill you if you take them all at once. 

How scary for you Chloecat! Never had anything that bad but each of us react differently to having our body flooded with poison. I definitely was very weak and tired during the 10 days after each infusion. Resting and sleeping is the only option I think. I also had a bottle by my bed so I didnt have to go to the bathroom at night. No dignity with cancer.

Look after yourself and keep going - it will end xx

Oh it sounds absolutely horrible dear sending hugs, hope it is an isolated incident, but it knocks your confidence.

Regarding the Paracetamol, you can take it for months and years I have patients who are on it long term. Standard dose is 500mg x2 four times daily 4-6 hours apart and not more than 8 tablets in 24 hours. But check with a Doc next time you see one to make sure. 

Hoping some of that sparkle makes a return soon. Meanwhile you're in my thoughts and prayers xxx

Oh , that sounds really scary!! Glad you're ok. 

Just to echo what others have said - pain relief works best if taken regularly. It is much harder to control pain once it gets a hold, so stay on top of it. And paracetamol at the doses mentioned above is safe long term under medical supervision. I have been on cocodamol for over a year now, 30mg/500mg paracetamol x2 4 times a day. Liver and kidney function tests are fine.

Hugs xx

Hi all

Well, what can I say. Had my MRI and CT scans yesterday. Done with no problem. Went home. HOWEVER. Had a call back from the hospital to go back in. They need to give me a prescription. NOW WAIT FOR IT – I have a blood clot on the lung!!!!!!!! Radiographer from the CT scan saw it. Now have to take innohep injections every day in the tum, indefinitely. Blood clots in lung can progress to pulmonary embolism which can be FATAL. Effing hell!!!! Asked if this was the chemo and is certainly mentioned in the side effects. Medics said it can be as a result of both the chemo and myself. What! Had no indication of this before chemo!!!!! Certainly reading up the signs of a blood clot in the lung don’t mean anything to me as I haven’t had any!!! Sheesh! I really do feel fine.

Hair loss – still continuing and could be classed as bald. Still quite a few tough little ‘stayers’ though all over and can still make a semblance of hair at fringe, sides and back under my hats. Keep on in there you tough little stayers!

Boob - sometimes aches/pains me. Taking the Paracetamol stopping this though only taking intermittently now and only if I feel a pain. No Ibuprofen though as it can mask inflammation/infection. Had some pau d’arco under the breast – this has now gone – chemo must be working. Can feel the Lesion 1 (ER3/PR6) but the whole area does seem to be softening and some of the nodules have gone! Lumps near the crease have got smaller! Keep it up girl!

Taste –it’s only my green tea now which is still a problem. Food tastes fine.

So there you have it. Me on this chemo train and it’s joys!

Love, hugs and positive thinking to all.

wow

that was lucky !

blood clots are a thing with chemo, I'm sure there's posters up all over the chemo unit at the Marsden, that and sepsis

I think walking every day helped me and you need to drink fluids or eat fruit and veg to keep you hydrated .

sending positive thoughts your way !!!

hugs

Carolyn

xxx

You're very lucky your clot was found early I ended up spending 4 weeks in hospital because of PEs, including 2 weeks in ICU. It was apparently a mix of causes, including hyperthyroidism, diabetes (caused by the steroids) and atrial fibrillation (caused by the chemo doxorubicin). So my advice is keep a strict eye on your heart rate. If it goes over 100 resting, or you get palpitations, or get breathless, or feel that your pulse is uneven or thready then get checked out as soon as you can. 

Oops I forgot to add that when I had AF, I couldn't really count the pulse in my wrist. I could feel it was there but there wasn't a regular beat. 

Hi All

Had my MRI Liver and CT Thorax Abdomen Pelvis scans. Come back with suspicious lesion on the liver so no distorted image here! Also a smaller one more deep seated. Now want me to have a liver biopsy. Yikes – reading up on this and not happy about it - it can cause seeding of cancer and this from the UK British Liver Trust!

If anyone has had this can they come back to me on how this went for them? Have watched a video on YouTube on how they do in America which has given me a sense of what is to come. Was a bit ‘alarmed’ that this is a long day procedure and that one of the worst things to happen was that I could have a major bleed from it!!

Having said the above you will be aware that I am now taking innohep injections for the blood clot on my lung. No advance preparation mentioned by oncologist on what to do about these like stopping them now or explaining IF this is the right way forward given the risks!

They also want to do another Breast MRI to see if there is ANYTHING that the chemo is doing. Awaiting appointments for both of these.

Boob was doing well but some new lesions beginning to show – one particularly near the surface. It has red capillaries pushed to the top of the skin and are noticeable. If it gets any bigger it will break through the skin to become a fungating cancer lesion! I am a little alarmed that the medics not paying as much attention to this as with the liver. Did ask about any treatment for this in the interim and the only thing they said was to have some radiotherapy on it. Immediately refused - though I am still thinking about it. Mentioned a few other alternatives in their field like HiFU, Radiofrequency Ablation, Laser but nothing came back from oncologist. KNOW, from research, that Radiofrequency Ablation being used in America on the breast. NHS just so slow on the uptake as with the example of Proton Therapy. Government shamed into getting 2 of these built, 1 in Manchester, now built, and 1 in London, being built, from the time when that young lad was ‘kidnapped’ from a hospital in the UK by his parents and taken to Europe to have it for his brain tumour. Kid is doing really well as a result.

We just don’t get enough options from the NHS or maybe it is just this hospital which doesn’t have the options. Will ring other hospitals to see if they do something. Ok, rant over.

Otherwise I am in good health if becoming a bit of a ‘pin cushion’ with bruises from the innohep injections, the collapse on my bathroom floor, hair loss, dry hands, 1 bout of diarrhoea – all from this latest cycle of chemo. Lovely!

Today, I have had my 3^rd chemo cycle anyway. Until the new scan result and biopsy are known it seemed this is the best way forward for the moment.

All my love to everyone

Hi .......I had the liver biopsy , they wanted to know if the secondary was the same as the primary,or perhaps changed to Her positive , so they would know which chemo was best 

despite being about the most anxious person on the planet I am still here to tell the tale ! 

They did frighten me a lot with their “ risks “ including , as you say , bleeding ......but it was actually ok , hurt straight afterwards ,wanted me to lie on my side , but when I got on my back it was ok , a bit of spasm pain , he said it irritated the capsule , I was in the ward about 3 hours , then got dressed , and because I live alone I stayed in overnight , slept right through and came home 0900 , didn’t take any pain killers ,not even paracetamol .

but I can see that the anticoagulants are a problem ......I think you might need to decide who you trust ......I suppose they are gathering information to get you the best treatment ,but if you are not happy , I suppose you can refuse , it is your health , your life , your worry and you have done a lot of research .......best wishes anyway ........x