September 2016 starters

Hie I started Fec-T in September, and had all sorts of issues especially with cycles 2, from painful veins, flu and increased urination. I have read most of the posts here and have been helped. I used the cold cap twice and on Cycle 3 could not tolerate it. Hair intact but very thin. I am starting the T part of the chemotherapy any advice.

So what’s the deal with this dizziness? 

Had cycle 3  TC on Tuesday, started g-csf injections again last night (?) and today I feel utterly useless! I’m usually fairly game by now. I know recovery gets longer the further in you get but…!!!

Very frustrating. Has anybody had anaemia? I dont know when I’m supposed to know if I’ve got it! Temp is normal. Not breathless, just imitating a wet rag today. 

Ugh…and I wanted to bake today!

Rant over.

 Jo xx

Hi Ru
I started the T bit 10 days ago. Was nervous about starting because of what i had read from other ladies. I was fine on the day of my chemo and the day after. The bone pain and tiredness then kicked in. I managed it with paracetamol and ibuprofen every 2 hours or so (alternated) plus 1 Claritin in the morning. That managed the pain although if I lapsed with the pain killers I paid for it. For the first few days I also had night sweats and about 5 visits to the toilet per night which obviously resulted in lack of sleep for me and my increasingly not so sympathetic husband! Ended up putting a towel on my pillow which helped with the sweats ( hadn’t suffered with this s/e quite so bad whilst on the FEC part). After day 7 the pains subsided so I stopped with the painkillers. The night sweats have eased off too. I occasionally get the bone pain in my back and ankles but it soon goes. I get out and about every day which I think helps. Hopefully that’s it now until next time. Good luck with yours it might not be as bad as you think x

Thank you See See

Thank you OldDawn63

Thank you Sweetbriar1 I am dreading the toilet visits cause they have not been easy with the Fec either.

Dear Ru, there are some plus sides to the T, you don’t feel nauseous, or at least I didn’t (my oncologist had told me that most people don’t feel sick whilst on T). Also, my veins aren’t so sore. Again, I had been pre warned that T wasn’t as harsh as the FEC. I personally find managing the bone pain easier than feeling sick all the time. One other s/e I forgot to mention was the sore mouth. I’ve got one or two ulcers but nothing too bad. The best thing is it’s over half way through now. Keep positive and you/we will soon be at the end. X

Ladies - the main thing I have found about toilet visits is to be prepared for every eventuality! For instance, the FEC gave quite a few of us constipation, and for some of us it took a while to resolve, but each of us found something that worked for us in the end. But from reading the posts of ladies further forward with their T cycles, it seems that Taxotere can cause the opposite, as well as making us wee a lot. I have noticed a number of posts about the ‘Tax Trots’ and I’ve actually experienced a bit of this myself today, though only a couple of times. Being on a combination of drugs it is a bit unpredictable as to which way things will go for me, and I wouldn’t be surprised if it changes across the cycle. So it’s probably a good idea to have in stock some laxatives and Immodium as well as the Tena Lady pads just incase!

Hi OldDawn63 - I’ve had aching gums and sensitive sinuses too. The sinus issue actually started whilst I was on FEC but it hasn’t been too bad. My dentist told me not to use a mouth wash (I use Corsodyl) after brushing my teeth as they counteract each other. I tend to therefore use the mouthwash midday or during the night during one of my many jaunts to the bathroom! I also floss twice a day. I love my food so the thought of not being able to eat properly because of ulcers etc fills me with dread. My taste buds have definitely changed though. I’m always really hungry. I’m trying to watch my weight but it’s difficult when you can’t exercise as much. I haven’t stood on the scales but I’m guessing I’ve put on about a stone since diagnoses in June. Thank god for elasticated waste bands! ?X

Thank you Sweetbriar1 that is helpful. We can all get through this.

Hello ladies, I’m on #3 of 4 TC & so far I’d say the worst thing I’ve experienced is the fatigue & achey niggles in joints. Also mega burnt mouth sensation & crave sour/tarty tasting things. Pineapple is great! No sickness so far but they do give me lots of meds to prevent this. I have lost my hair & my nails are starting to get crumbly now but I keep them painted dark. I have gastro-intestinal issues…Nothing major, just bloating & wind & constipation sometimes which doesn’t last too long. Some indigestion in early part of cycle. I try to take paracetamol at night if I remember and usually take a Nytol as sleep is elusive! I tend to feel humanish around day 10. This is when my g-csf injections have finished.
If after surgery they still find cancer cells, I will be moving on to 4 cycles of FEC (as part of the Rosco trial) so I may be coming back to you for advice! All in all, I’d say TC could be worse!
Hope this helps xx

Hi Lisad and Old Dawn

 

Its sadly reassuring that you both seem to be feeling like me. However on day 9 it seemed to improve. My appetite came back and I managed a short walk. There is hope ?

I feel such a fraud complaining about my SEs which are so minor compared to what you are all going through. Fatigue has hit me like a ton of bricks this cycle, which has slightly offset the joy of reduced nausea, but I’m trying to look on the bright side.

Has anybody else has issues with excess mucus? I seem to have a permanently slimy mouth for about 7 days or so each cycle. Most unpleasant!

I hope you all continue to improve and get through this tough time.

Thanks for good wishes Auntinanna. Just like Lisad I have also largely gone off sweet things and have a stock of uneaten chocolate. Went to doctor this morning to get throat and urine checked. I don’t have a throat infection, and intermittent soreness is probably due to acid build up/ reflux, which could be antibiotics and could have been made worse if a tablet went down the wrong way. Have been recommended to take Omeprazole for this, and have been given a repeat prescription. She doesn’t think I have UTI on this occasion, but has sent off a sample to make sure. Nurse confirmed that mild nausea/ loss of appetite is a SE of the chemo and that it ‘comes and goes,’ but didn’t suggest any practical solution other than eating whenever I feel like it (not much use if I can’t because of the antibiotics). Doctor said I should get advice from nurse on remedies for sore mouth, nurse suggested Difflam (only available on prescription from doctor! ?). Can’t go back for this at the moment - I am currently in A&E again to get latest scare (blood in poo) checked out. Had another attack of the ‘Tax Trots’ not long after I got home from doctor’s, and as you can imagine I freaked out when I saw this ?. After discussing with nurse on phone, she confirmed this is not a known SE of the chemo drugs, but could be either piles or could have been caused by Ibuprofen or Paracetamol which I was taking for bone pain. She said to stop taking them now if pain appears to have gone, and to go to A&E to get it checked out, so here I am again ?. They have taken obs and blood samples, but it’s extremely busy, so could be in for a long wait. All this is getting me and my husband down, it seems to be one thing after another. I hope it doesn’t turn out to be anything serious.

Oh Dawn you are being put through the mill. I hope it isn’t all too serious and it is sorted soon. Can your oncology team not give you Difflam? I have received it from the outset as part of my post chemo prescription, even before anybody knew if I’d suffer from sore mouth.

I’ve largely gone off sweet things too, though I didn’t have much of a sweet tooth to begin with. I’ve also gone off milky drinks e.g. lattes. Having said that my appetite is like a spoiled child. Today it demanded a giant chocolate chip cookie! As my diet is generally healthy I don’t feel too bad at giving in to random cravings too often.

Been to doctor’s and was reassured that there’s no need to panic about bleeding when going to the loo (on closer inspection it appears that the blood is not actually in the poo) unless it persists for a fortnight or more (pity the doctor in the hospital wasn’t clearer about what she meant by persist!). She agreed with hospital that it is probably due to irritation of bowel by all the medication I have been on The main suspect is the antibiotics, because it is listed as a side effect in the leaflet with them. Although I have had them before without it causing this problem, the doctor pointed out that I am now on a different combination of chemo drugs, and it may be that my body is less well able to tolerate the antibiotics with the T and Herceptin. Anyway, she has said to stop taking the antibiotics and all other medication apart from the Fluconazole (to prevent oral thrush) to allow things to settle down, but to go back if the problem is still there in a fortnight. She is also referring me for a colonoscopy to set my mind at rest. It is a non-urgent referral at the moment, but she will escalate it to urgent if I have to go back again in a fortnight. Have briefed oncology nurse, as if we still have a problem in a fortnight, the next chemo cycle will have to be postponed. We will have to wait and see what happens. I am unfortunately still having to dash to the loo about 10 minutes after eating something, so I hope it does settle down soon! Have been advised not to reach for lmmodium for the time being, as the fewer drugs my gut has to deal with the more chance it has to recover on its own. Let’s hope so. Have also got the Difflam, and my mouth is a bit better today. I have also managed to keep eating today - advice about eating small amounts when you feel like it is sound if you can eat what you want when you want, and now I’m off the antibiotics I can. Chicken and sweetcorn soup I had for lunch was the first thing I can say I actually enjoyed eating since Saturday morning. The main problem is drinking, as there is very little I actually want to drink. At the moment I only seem able to tolerate water and black tea with milk. Does anyone else have this problem?

I’m the same Dawn, with drinks. I am finding it very difficult to find palatable drinks. I think the slimy sensation I have doesn’t help as a lot of drinks make it worse which then sets off nausea. Weak squash and occasionally coffee are about all I can manage.

Hi Old Dawn,

 

My digestive system is not coping well either. In terms of drinks ginger beer is good for me though I sometimes let it go flat if I’m troubled with bloating. Also I find fennel and detox tea are good for the digestion and taste acceptable.  

 

I usually take immodium (at least three a day) because of my Crohns but stopped for the first 12 days of the T cycle because the effects of chemo and antibiotics were too much to bear. This strategy has resulted in a sore bum but that’s less of a problem than constipation.

 

I have the same drug as you for persistent thrush.

 

I’ve had LOADS of colonoscopies in my time so if you need any advice, I’m happy to assist. 

Thanks for offer re: colonoscopy See See - though if as I hope it is a non urgent referral it will be some way off and probably post chemo. Something to look forward to in the New Year (not), but hopefully, I will be better able to cope with it by then. Unfortunately, ginger and pineapple, the two things that seem to be most recommended for chemo patients struggling with appetite, are amongst the few things I went off early on in the process, during my first FEC cycle. I have had a bottle of ginger ale in the fridge from before my treatment started, and decided to give it a go on Saturday but could only manage a couple of mouthfuls! Nurse also suggested flat Coke, but as I have gone off most sweet things and never liked Coke to start off with, I’ll give that a miss too. I told you I was awkward! ? Sorry to hear Auntinanna is having the same problem with drinks as me. It does seem that your taste can change over the treatment cycle, and others have reported that it has got better over time, so let’s hope the same happens to us and our appetites will improve.

I really hope so, Dawn. I try not to moan but I really am getting fed up with having such a picky appetite, and one that changes from day to day!