Hi I’m new here but really grateful that this is here to help myself and others going through this anyway I’m starting 6 cycles of fec on Friday and I’m terrified just wondered if anyone has any advise please thank you x
Im going home - yay! my neutrophil levels have picked up to a point at which they feel I am now past the worst so I am being discharged. I cannot tell you how good that feels as I can’t wait to have some fresh air. I was given the G-csf twenty-four hours after my first cycle Blueash and I will be given the injection to administer at home after each cycle (or I can arrange for them to give it to me if I prefer). I am now day 13 post 1st cycle and actually feel human again so despite the set-back I am a step closer to kicking this!!
Kath I hope that you managed to get some sleep last night and that the anti-sickness medication is working for you and you feel ok. I found that I was good until day five, when I came off the steroids, and then it was the tiredness that hit me so look out for that and rest when you can.
Hello Smart, sorry to hear that you are joining us in this battle but welcome. I have obtained lots of help and advice from this forum and it has helpedme to understand that we can ALL get through this and get to the end of our treatment despite how terrified we are.
Have a lovely day ladies
Joan, and so glad to hear that you can go home and feel better. You must be so relieved!
I took the last dose of steroids earlier and already feel exhausted and have been sleeping. Heartburn seems to have kicked in now.
Smart, welcome to the forum. As others have said, this is such a useful place for support and advice.
Kath x xx
Hi ladies
Day 5 post first chemo and still feeling nauseous and not with it. I know from reading all your posts this is to be expected but at the moment I feel for the remainder of my treatment I’m going to feel a shadow of my former self. I keep waking up thinking today will be the day when I start and feel better again, but no joy as yet. I realise it’s still early days after the first one, and they are going to try me with different anti sickness next time. Any advice? X
Hi thank you so much I’m not cold capping so thinking of shaving my head Thursday night i think it’ll be too distressing having it falling out thank you again speak soon Sam xx
Thank you Sue C xx
I am new to this forum/ thread having started my first cycle of chemo (FEC) on Thursday 1 September. Sorry about the length of the post but my experience so far has been somewhat traumatic. My cancer is HER2 positive so I am scheduled to have 3 cycles of FEC followed by 3 cycles of Taxotere and Herceptin, the objective being to shrink the tumour prior to lumpectomy. It has been interesting to read about other people’s alarming experiences with this regime, because things have not gone well for me either and I too have ended up in hospital, though not for the same reasons. The cocktail of anti-nausea medication I was prescribed (Granisetron, Aprepitant, Dexamethazone and Lansoprazole, then as a last resort, Domperidone) did not work at all and I couldn’t eat a thing the day after except a couple of grapes. I ended up being admitted to hospital as an emergency in the early hours of Saturday 3 September due to uncontrollable shaking and dizziness. Following a CT scan and blood tests they found I had cerebral oedema and very low sodium levels. However, following treatment with higher doses of Dexamethazone, they did a MRI scan on Tuesday which showed my brain had gone back to normal, so I was able to go home the following day, fortunately, because it was Day 7 and I couldn’t afford to be on a general hospital ward for any longer. The doctors in the hospital put the cause of the oedema down to an adverse reaction to Domperidone, which is now on my ‘banned’ list, but the oncologist is sceptical about this. I also think other factors could have been at play, for example, my inability to eat anything/ diarrhoea/ drinking a lot, and possibly also the effects of an infected sweat gland under my other armpit which we thought had been dealt with before treatment started but it flared up again while in hospital, and which I am now on more antibiotics for. I also developed a UTI in the hospital due to not being able to drink much for two days, which has fortunately now cleared up following a 3 day course of Trimepropthrim. Oncology nurse assures me that other anti-sickness options are available and that the following cycles of FEC are unlikely to be as bad, but I am still not looking forward to the next one. Sorry if this reads like a saga, but hope it gives others encouragement that no matter how bad your initial experience, with the help and support of your local hospital and oncology team you can overcome. I am still only at the beginning of my chemotherapy and it is early days, but I am now a lot better and - provided the horrible sweat gland infection really has gone - ready to move forward with the second cycle of FEC next week, which surely cannot be any worse than the first one…??? I have noted the tips about making sure I drink plenty of water before the treatment and will definitely try this next time.
Hi Angie51
I feel better today thank you. Hopefully this is day 1 of getting back to a more normal me! I feel bad whinging as EC is apparently more doable than some of the other regimes you ladies have. Can I ask, with the bicarbonate and salt water do you literally just rinse your mouth out? I don’t have sores but I have teeth ache if that makes sense and jaw ache!
Hugs to all
Sarah x
Had my 2nd FEC today. They put the cold cap on before they put the cannula in. DON’T LET THEM DO THIS. It subsequently took 7 attempts to get the cannula in and then the drugs really hurt going in because my veins were closing down because of the cold. I now have a very bruised and sore hand / arm.
Hi See See
That’s awful! Is it not plain common sense not to use the Cold Cap after the Cannula?
Poor you, I bet it was horrendous.
Sarah xx
Hi Smart,
I’m also joining this thread as got confirmed tonight that I will definitely be starting chemo next week. Waiting on a call tomorrow morning to go and meet the oncology nurses on Friday, and they’ll tell me on the phone which day next week we kick off cycle 1 - I’m having 3 X FEC and 3 X D. Please do let me know how you find your first cycle - and good luck!! X
Hi Sarah,
I have read that it good to rinse you mouth out with Salt and bicarbonate soda about 8 times a day to help prevent mouth sores. I have mine ready in the bathroom!
S x
Thanks SJ x
Thanks Madmac x
Hi Everyone,
I’m a late starter for this group as I have just been given my chemo start date (FEC-T regimen) for 26th September. Like everyone else, I guess, I’m feeling a bit daunted at this point but am trying to prepare. Hair is cut (very!) short already and gathering the essentials together.
Anyone have any thoughts on the best fragrance free moisturisers?
Had my first chemo session yesterday and feeling ok today no sickness, just a dull headache. Although it’s early days so will see whether I feel so positive it a few days time :womanwink:
Had a lot of trouble finding a vein so ended up with my arm in a bucket of hot water for 10 minutes :womanlol:
Now have an appt booked to have a port cath insert.
Hope everyone else is doing Ok.
I now this is off topic, sorry! but I am struggling to get any really nice headwear, I want something a bit glam, some of the websites I have visited look a bit drab. I have purchased a wig which I would only use for going out and meeting with family & friends, and quite happy to wear scarves etc for shopping. I bought a couple of bits from here but they are based in the US headcovers.com/
Hi all just to update on my new ‘regime’ after the side effects that I experienced on cycle 1 and the very low levels on my neutrophils. My oncologist has now swopped me from FEC-T to EC-T (dropped the fluorouracil) for the next two cycles. I will then have 12 sessions of T but with a much lower dose on a weekly basis rather than 3 cycles of T every 21 days. He said that my body should be able to tolerate this plan of action a lot easier so fingers crossed - might be something worth discussing with your oncologist Anne?
I actually feel human today and even cut the grass - what a wonderful feeling do do something so normal yet so rewarding in terms of achievement 
Old Dawn you made me chuckle too with your pier story and thank goodness we can find something to laugh about in all of this.
I have now got my wig in place - just in case - and my daughter, who is a hairdresser, trimmed it up for me tonight. I chose to do this rather than have it done at the ‘wig’ salon as she knows what I prefer and we had some laughs whilst she did it and celebrated with a glass of Pimms afterwards. I must say it is now day 15 and my scalp feels ‘crawly’ so perhaps this is the start of the big fall out despite cold-capping. I guess tomorrow will tell.
I had my first chemo session yesterday, all ok but feeling quite nauseous despite all the anti sickness drugs. Any recommendations on what to eat on chemo day and day after? I’m thinking white toast or maybe tomato soup. Would welcome any good ideas from experience x
Hi all,
hope you are all doing reasonably ok - I am aware some of you struggled more than others. I keep my fingers crossed that your adjusted meds may make it a little bit easier the next time.
For all of you, who are experiencing tast changes, etc -
Have been doing some research re loss of taste - as it happens on FEC and the T bit, too - and unfortunately can get worse down the line for some…
This is what I have found and sorry for the long post - but make it easier for those who have challenges following a link -
QUOTE -
There are 4 main types of taste: Sweet, sour, bitter, and salt. Sense of taste is primarily located on the tongue. Each type of taste is located within taste buds on different sections of the tongue. As you chew your food, it mixes with saliva and as it comes in contact with the taste buds, messages are sent to the brain regarding your sense of taste. The brain processes the messages and helps you identify different tastes.
What are taste changes?
Taste changes are common during chemotherapy. The exact reason for taste changes is not clear, although it is thought that it is a result of the damage to the cells in the oral cavity, which are especially sensitive to chemotherapy.
About 50% of patients getting chemotherapy experience taste changes.
Drugs most commonly associated with taste changes include carboplatin, cisplatin, cyclophosphamide, dacarbazine, dactinomycin, doxorubicin, 5-fluorouracil, levamisole, mechlorethamine, methotrexate, paclitaxel, and vincristine.
Most people report taste changes involving a lower threshold for bitter tastes and a higher threshold for sweet tastes.
Some drugs also produce a metal taste during the actual intravenous infusion. These include nitrogen mustard, vincristine, cisplatin, and cyclophosphamide.
In addition, the association between taste of food and chemotheraphy may lead to taste changes. Chemotherapy loss of sense of taste can occur purely from the association of an experience of nausea and vomiting with chemotherapy.
Taste changes may occur during therapy and last for hours, days, weeks, or even months after chemotherapy.
Taste changes are also common in people taking biologic therapies such as interleukin-2, and interferons. Most people report taste changes involving a decreased threshold for spicy foods, describing most food as bland, bitter, like chemicals or medicine. Both the cause and duration of taste changes associated with biologic therapy is unclear.
Things you can do to manage taste changes:
Maintain good oral hygiene - brush your teeth before and after each meal.
Choose and prepare foods that look and smell good to you.
Eat small, frequent meals.
Do not eat 1-2 hours before chemotherapy and up to 3 hours after therapy.
Use plastic utensils if food tastes like metal.
Eat mints (or sugar-free mints), chew gum (or sugar-free gum) or chew ice to mask the bitter or metallic taste.
Substitute poultry, eggs, fish, peanut butter, beans and dairy products for red meats.
Marinate meats in sweet fruit juices, wines, salad dressing, barbeque sauce, or sweet and sour sauces.
Flavor foods with herbs, spices, sugar, lemon, and tasty sauces.
Chilled or frozen food may be more acceptable than warm or hot food.
Try tart foods such as oranges or lemonade (this may be painful if mouth sores are present).
Avoid cigarette smoking.
Eliminate bad odors.
Eat in pleasant surroundings to better manage taste changes.
Increase your fluid intake.
There is no one magic solution for taste changes that suits everyone. Finding foods that taste appealing may be a process of trial and error. Some people who experience taste changes avoid their favorite foods to prevent the possibility of spoiling them for the future.
There are no medications that address taste changes. However, some studies have suggested that deficiencies in zinc, copper, nickel, niacin and vitamin A may contribute to taste changes. Do not take more than 100% of the recommended daily allowance. Remember, you should discuss taking vitamins or any other “remedies” with your doctor before you begin. -END QUOTE
Hope this may be of some help
Sue xxx
Hi all
Started TCH last Monday and have had nausea, vomiting and constipation. I now have diarrhea and awful stomach pains. Any suggestions? Trying to drink but not feeling like food.
Kath x xx