Hi Spookymoo, your GP sounds awful. Can you see a different Dr in the practice? I’m realising more and more how great my GP is - she took one look at me and said we have to get this pain under control and wrote me a prescription for dihydrocodeine. I really second not taking paracetamol because of the effect it has on lowering your temperature. I googled it and it said 8 hrs for it to lose its effect. So I just took it at night during Chemo I (Docetaxel & Avastin). I honestly didn’t feel any more ill when my temp rose to 38.3 than I did the day before with a normal temperature.
I’m having T-FEC rather than FEC-T (plus a trial drug) so I’m reading about everyone’s FEC symptoms and learning what to expect. As for what to expect on Tax, well it really hurt going into the vein, and 3 weeks on, the vein is still red, hard, raised and sore. Chemo day plus the next day I felt fine (and wired on the steroids) day 3 I started to feel a bit achy and tired that evening. Woke in the night with serious pain in every joint and felt flu-y and just rotten. Next 2 days a lot of joint pain and feeling ill, started to feel better, then got hit with a raised temp but if that hadn’t happened I think I would have been OK by day 6 or 7. Weeks 2 & 3 were absolutely fine, with energy levels pretty much back to normal. It’s chemo clinic tomorrow and then Chemo II the day after, so I’ll update on how round II goes.
Hi September Ladies - just popping in from the land of NED after going through what you are now going through. I was diagnosed in May 2011 with Invasive lobular stage 3 cancer with spread to the lymph nodes (11/12) Did the chemo first 4xEC and then 4XTAX, then radical mastectomy and 15 x rads - I am here to tell the tale after losing ALL my hair EVERYWHERE and my finger and toe nails. It all came back for me and life is good now.
Stick with the plan and eventually you will emerge like butterflies
xx
Not good news with my bloods. According to the chemo nurse who called me at 7pm last night “they look wrong”.
i wasn’t sure how to take this… Had someone written them down ‘wrong’? Was there something ‘wrong’ with the counts?
Turns out there are a ‘couple’ of really out of the range counts… And before you ask, my neutrophils and WBC are brilliant:-)
Thats what makes it more worrying.
Apparently my creatinine levels are really really low. They are an indictation of kidney function (yikes!). I’ve committed a sin and googled. High levels seem to get lots of press as they indicate damage to kidneys… Phew, mines low.
Low levels are reported less often… Could be due to not enough protein in diet, muscle wastage, old age, chronic liver disease or pregnancy. I’m very sure none of these apply to me, Especially as levels have been normal until now. I’m hoping its just a result of chemo toxin build up, or some simple explanation like eating too much beetroot (August thread joke!)
Chemo nurse had a call into onc to see if chemo can go ahead later today. She said she’d call back if I couldn’t go ahead (but that was at 7pm). I’ve heard nothing so am hoping I’m ok to go ahead with chemo #4 today.
I’ve been awake most of the night in that high dose (for TAX) steroid sleeplessness phase. Worrying that I’ve got kidney damage or liver disease to add to my list of ailments:-(
I’m sure it’ll be ok… You know how lying awake in the early hours messes with your mind… Xxxx
Supertrooper wrote: "I am here to tell the tale after losing ALL my hair EVERYWHERE and my finger and toe nails. It all came back for me and life is good now. Stick with the plan and eventually you will emerge like butterflies."
Supertrooper - thank you for your positive post. It is good to hear from those who have “been there - done that, got the T shirt” and come out the other side of the chemo tunnel
It sounds like you had an awful lot of horrible SE’s to manage too!
I wish I could hibernate through this like a chrysalis, and then emerge in the spring as the butterfly with it all over with… but I know the spring will be a fresh start for many of us, so it is all worth it.
My bloods were all over the place… Creatinine levels caused concern, but because bilirubin levels within range onc happy to proceed?!?
I think the only bloods within normal range for me was that, WBC and neutrophil. My liver enzymes were through the roof, but half the levels they were last time apparently!!! Glad I didn’t know that at the time!
Onc has reviewed it all and is satisfied its all due to my body processing the poisons, and it isn’t an indication of any underlying issues / damage.
Must admit, I was more an a little worried!
Good news, chemo completed and I’m now 2/3rd of the way through the chemo tunnel!
I too want to emerge like a butterfly in the spring, do you thing that’s why many if us have chosen flowers as our avatar? I chose cherry blossom because I look out out on 2 cherry blossom trees in my front garden, and when they flower I know spring is here…
Hi Luvvie66, that’s a beautiful reason for your avatar. Mine is a picture of me taken last summer with a mashup effect on it. Sort of appropriate!
Having chemo 3 today (hopefully). Feeling a bit more concerned than with the last one. I’ve had a cough and tickling throat the last few days and also sore veins. Part of me would like to put it off until I feel better but a bigger part just wants to get it ticked off.
Nicola x
Luvvie66 - I am so relieved for you. It must have been a worrying time, thinking there might be another problem to work around. Just goes to show how well your body is ridding you of the toxins
Now rest and get over the next few days of nasty side effects.
My avatar - the daisy - one of my favourite little wild flowers. They always look so happy to have found a scrap of earth to flower on!
Nicola - I hope your chemo can go ahead. Though I can appreciate the wanting to put it off/wanting it to go ahead thing… hope the cough doesn’t develop into anything more, and you are feeling brighter soon.
June22
Hello to everyone and hope things have settled down a bit-I know things haven’t been easy for quite a lot of us recently.
The discussions about avatars has inspired me to try and add my own (if my IT skills allow). I love bluebells-I remember the beautiful, peaceful bluebell fields in Lancashire where I grew up (a far cry from N/W London where I live now).
keyfeatures-I hope you get your chemo today. My PICC seems to be better behaved at the moment thanks for asking-and the heart rate miraculously came down when I left hospital
Theres another thread that has been started for people who are going to the Younger Womens Forum in Brighton in November-I think so posters get to know each other a bit better before going. I know you have posted already keyfeatures but just wanted to let others know if they are interested too.
All the best x
Yay!!! Chemo 3 successfully done. Feel a bit mad to be so pleased to be having a load of toxins in my body. Portacath is definitely due to be in for the next one. Going to be under local anaesthetic which I am actually quite pleased about. As long as I can’t see anything I’ll be fine. I get quite scared of generals due to having had a bad asthma attack coming round from one as a teen.
Hi all - had my 3rd chemo yesterday and so far feeling ok but don’t want to count my chickens just yet. Keyfeatures you will be so relieved when you finally get your portocath (or portoloo as I keep calling it) put in as it makes life so much easier. I had mine done under local anaesthetic and didn’t see or feel a thing except it took twice as long as my veins were crooked. Good luck to everyone for their next round of chemo and hope everyone has minimal side effects.
My cough started getting phlegmy in the night. A few funky colours and then a bloody one too. Called the on-call onc (luckily not a useless one this time) who said I should go to the hospital to be checked out, as coughing blood is a cause for concern. In terms of the chemo side effects, so far even less than chemo 2. I am scared about the blood in cough, although it ties in with getting this bug so hopefully it is just a bit of an infection. Never had blood when I coughed before and obviously you immediately worry if it’s a sign of cancer in the lung. Really brings it home how another test could show up a spread / secondary and turn the world upside down again. Trying not to think like that because it doesn’t really help but it is hard
Hi Nicola, just saw your post and I can understand why you are worried. Don’t forget that the chemo causes mucositis, and this may be the reason why you have coughed up blood. From your post, it looks as though you’ve probably been coughing rather a lot and that can hurt quite a bit even when you’ve not had chemo. Hoping they get the tests done quickly and are able to reassure you. Cyberhugs. Margaret
Hi keyfeatures-its such a vulnerable time and its normal to think like that sometimes. It sounds like you might have an infection (I know you’ve had a sore throat for a while too) and I’ve had symptoms like that when I’ve had a chest infection. I know its still a worry.
Please let us know how you get on at the hospital and lots of xxx
Hi Sukiem / Ladies, I also started my FEC treatment in September. I tried the cold cap it but unfortunately it hasn’t worked very well for me, I have lost most of my hair but have managed to keep hold of my fringe! I have had two treatments so far, this week my blood count was low which left me feeling very exhausted so they have delayed until next week - I was hoping to be finished by Christmas! The most annoying thing for me is the permanent mucus in my throat, it’s horrible. I cannot seem to find anything to releive it - they say to gargle with bicorbonate of soda but that hasn’t worked for me - any other tips please? Good luck everyone.
Hi Annie-I’m also trying cold cap and due for my 3rd FEC next week. My hair parting is widening and its thinning but I have enough to poke out of hats and headscarves!
Do you have neulasta injections? They boost your white cells and are supposed to prevent neutropenia. I also had to have a delayed chemo as the nurses couldn’t cannulate me on my 2nd dose-I have a PICC line now. Its really disappointing when they delay treatment but v common. I too won’t be finished until after Xmas.
Have you spoken to your onc about your throat problems. I don’t know whether manuka honey might help.
Keyfeatures - so sorry to read you are so poorly. By now you are probably getting checked at hospital, and I hope they can confirm it is an infection from coughing and chemo, and nothing more serious.
Let us know how things are when you can get back online. I am sure all the September Ladies send you their best.
June22
Back from the hospital with good news. Chest x-ray, bloods and ecg all good so they have sent me home with some antibiotics. My white blood cells are high (higher than normal) which might be granocyte or body fighting infection. Unfortunately the antibios are the same ones (claritomycin) I had after my op that gave me very bad thrush (the curse!) but I can’t have penicillin and these are the best alternative apparently.
Even better news is side effects even more minimal than last time - chemo 3 was yesterday afternoon. Felt a wee bit odd last night, but slept right through the night and feeling fine today - good job given all the hanging about in hospital today. So half way and onto docetaxel for #4
It’s thumbs up so far for fasting - although might be good luck too.
Thankyou so much for kind words and reassurances June22, sdfmeg. sukiem.
Sorry, haven’t been on line of late - had my treatment and felt a bit low! Thanks for the infor re: supplements Keyfeatures & June22. I’m really sorry to hear that you have not been well Keyfeatures and Fiona I hope your getting back to feeling alright sweeties.
I’m still trying to keep up beat but tiredness and chemo brain has set in!!! I didn’t like my 2nd cycle I felt terrible and came to the conclusion then that I didn’t want anymore…I guess it’s a state of mind hey! I’ve been told and read that the side affects are minimal as per cycle. I’m praying to get through this like tomorrow and I prayer the same for you guys too.
I hope everyone has a lovely weekend - even if we are struck indoors LOL…
