69.3K members
1.2M posts
cancel
Showing results for 
Search instead for 
Did you mean: 

October 2016 starters

assaritti45
Member

Re: October 2016 starters

HI Ladies,

 

Fairycakes you will be fine, the fear of not knowing is worse then having it.

 

Antisickness i had emend, domeridone and one with a n sorry cant remember the name, they work but still felt sicky. so maybe i need a different one. I had lots of se 😞 now have difflam for my mouth.

 

Now have a terrible cough  was hoping to be well before 2nd chemo next week.

 

i am now day16 and sadly now losing  my hair, spent yesterday crying as i am dreading losing it. i have a lovely wig and scarfs etc but i have always had long hair which is now short. i know its only for a while and everyone keeps reminding me but your a live which i hate keep hearing i know its true but you know when you just want people to keep there mouth shut and they dont.

 

i really hope se dont get much worse i have really suffered these 2 weeks and really dont want it to get worse, dreading having anymore as it is 😞

 

hugs xxx

Sus12
Member

Re: October 2016 starters

Big hugs to you Fairycake for tomorrow. You will be fine 🙂
Sue xx
Sus12
Member

Re: October 2016 starters

Hi Liz
The PICC line will be fine. I was worried but it's been so much easier to put the chemo stuff and do bloods etc. A woman at the chemo unit the other day said her veins had collapsed and she now has problems using that arm. It has stopped me swimming but then I wouldn't have been able to go anyway due to the risk of infection from the public pool! Showering is easy with a Limbo sleeve but make sure you get given the right size. You need to ask for a prescription for one. The prescription I was given didn't state a size and I got a medium to large which was huge! Check your arm measurement online so you know which you need.
I'm cold capping too and mine was ok and I worried the same as you. No hair loss yet but it's only day 7 so who knows? 😄 I have hats and scarves sorted and a wig coming up and lots of nice dangley earrings :D. At least it's a colder time of year so hats won't be so obvious 🙂
I don't know about the FEC 80/100. I thought it was to do with the amount of Epirubicin but I'm probably wrong! I'm sure someone else will know though. I'll check mine tomorrow.
Hugs,
Sue x
fairycake2
Member

Re: October 2016 starters

Thanks for the information, I shall download the leaflets you have suggested. Also thank you to the member who pointed out that I might not feel ill until day 3, I had assumed it would be the same day as the chemo.

I made a trip to Boots today and bought some of the things people have suggested like the Lanolips and Difflam, although I'm hoping i won't need them. I do feel less tearful now and ready for tomorrow. Thanks for the help. 

Azara25
Member

Re: October 2016 starters

Just want to say thanks to Flopsy for posting the useful info on anti-sickness meds - I am due to have my Picc line fitted on Friday ready for 2nd chemo on Monday so this will be very useful in discussions as I suffered terribly with both vomiting and nausea on round 1 and need something better prescribed before I can face the next one ! 

Hope everyone is coping ok 

xxx

 

elisan
Member

Re: October 2016 starters

hi all, well had my first FEC today after much ado trying to find a vein. they have referred me for a PICC line which I'm not keen on but probably no choice. Staff were lovely and the experience was no where near as bad as I thought it would be. Did the cold cap thing too. Didn't seem very cold or painful as I have heard others describe so not sure if it will be of any benefit, time will tell. Feeling a bit woolly headed tonight and tired. trying to divert my thoughts from the anxiety of waiting on something happening.

sorry to hear some of you not having a good time and sending all my best wishes and hugs to you all.

Also meant to mention, I noticed that my FEC is listed as 80 and not 100. Does anyone know why this would be and what it means for me.

Liz x

Angywd
Member

Re: October 2016 starters

Hi everyone, sounds like we are all having such a tough time at the moment.  I started getting excruciating head pains, temp 39.8 and shaking all over on Monday, managed to drag myself to the hosp for my ct scan results appt and was swiftly admitted with suspected sepsis.  My boob had inflated to twice the size and was so so painful at the wound site.  They drained it but it's already started to fill back up again and throbbing pain.  Put on IV anti biotics and have been able to come home this evening with more anti biotics.

im so so fed up of being in pain and it's scared me so much I'm on the verge of tears all the time.  I'm due for my 2nd FEC on 4th Nov and I can't face another 2 weeks like the ones I've just had....

was due for wig fitting today even though I am cold capping so I have a back up if I do lose my hair, I know it will be this weekend if it does start to shed and I'm already feeling very low.

i literally had just 2 days of feeling ok again.  This is so much harder than I expected 😨

Love & Hugs

Angie

Sus12
Member

Re: October 2016 starters

Hi Sue B.
I never complain, in fact I get told off for thinking I shouldn't but as the BCC nurse said to me today we should as mine (and sounds like yours too) is not the norm and is quite a severe reaction even though yes some people are so sick they have to go into hospital which is truly awful but she said we def shouldn't be just putting up with this and getting fobbed off. She said we need to be able to eat reasonably and not feel so poorly this long in as it's not going to do us any good long term. We need our strength. We're worth it! Lol
Hope you get some thing sorted. I'll post what happens in the next day or two...
Hugs,
Sue xx
suebond88
Member

Re: October 2016 starters

Flopsy,  Thank you for such a detailed description of all the antiemetics....

i'm on metoclopramide and, as Sue has also said, it hasn't worked for me either.   My daughter suggested I ask for ondansetron.  My nurse is coming to see me tomorrow and I will ask her...

for me the nausea is the biggest thing.  I know that compared to some, I'm relatively lucky re side effects and shouldn't complain too much 🤕👍

Sus12
Member

Re: October 2016 starters

Flopsy thank you so much. That's really helpful and your situation sounded just like mine. After a couple of days of a few together - Aprepritant, Metoclopramide and Odansetron and 2 days of the steroid I've been given Metoclopramide only which hasn't worked and now just starting the Domperidone but the other chemo nurse I spoke to said they are different drugs but both work as the list says by emptying your stomach. I don't have much to empty so think it probably won't be any better! I'm phoning the hospital tomorrow as she advised to insist on different drugs that might actually work! She said it's not usual to still feel this sick this long in and that I've had quite a strong reaction.
Sue x
Flopsy
Member

Re: October 2016 starters

Hi Sus12,

You asked about sickness. I've finished chemo now but still have residual nausea.

 

I was sick all through my 3 FEC's and most of my T's.  In my case I did need to make a fuss and stop them fobbing me off. 

 

There are at least 5 different pathways in the body that can be tackled by drugs to stop nausea and vomiting. You may need to keep adding drugs together from different groups to get the nausea under control as I did. 

 

That's what I had to do. My clinic was very bad at this.

 

They expected to give me drug A  and if that didn't work drug B etc. I needed to take together drug A. B and C in the end. ABC were only found through trial and error. It was more like A, D and F.... I had to print off as list and then start working through them.

 

Hope this helps. I used the list on this page

 

http://patient.info/health/medicines-for-nausea

 

  • Cinnarizine, cyclizine, promethazine - these medicines belong to a group of medicines called antihistamines. The exact way that they work is not fully understood. It is thought that antihistamines block histamine 1 (H1) receptors in the area of the brain which creates nausea in response to chemicals in the body. They are thought to work well for nausea caused by a number of conditions including ear problems and motion (travel) sickness.
  • Hyoscine - this medicine works by blocking a chemical in the brain called acetylcholine. It is a type of medicine called an antimuscarinic (or anticholinergic). It works well for nausea caused by ear problems and motion sickness.
  • Chlorpromazine, haloperidol, perphenazine, prochlorperazine, levomepromazine- these medicines work by blocking a chemical in the brain called dopamine. They are useful for nausea that is caused by some cancers, radiation, and opiate medicines such as morphine and codeine. Prochlorperazine (or brand name Stemetil®) is one of the most used medicines for nausea. It works for many causes of nausea, including vertigo, ear problems and sickness in pregnancy.
  • Metoclopramide - this medicine works directly on your gut. It eases the feelings of sickness by helping to empty the stomach and speed up how quickly food moves through the gut. It is often used for people with sickness due to gut problems or migraine. It is not usually used for more than a few days.
  • Domperidone - this medicine works on the CTZ. It also speeds up the emptying of the gut. It is not usually used for more than a few days.
  • Dexamethasone - this is a steroid medicine. It is a man-made version of a natural hormone produced by your own body. Dexamethasone has a wide range of actions on many parts of the body. The reason why it reduces nausea isn't clear.
  • Granisetron, ondansetron, and palonosetron - these medicines work by blocking a chemical called serotonin (5-HT) in the gut, and the brain. Serotonin (5-HT) has an action in the gut and the brain to cause nausea. These medicines are useful for controlling nausea and vomiting caused by chemotherapy.
  • Aprepitant and fosaprepitant - these are newer medicines and work by blocking a chemical that acts on neurokinin receptors in the body to cause nausea. They are sometimes called neurokinin-1 receptor antagonists. They are usually given to people on a certain type of chemotherapy.
  • Nabilone - it is still not clear how this medicine works to control nausea. It is normally prescribed for people who are having chemotherapy.

 

maryminder
Member

Re: October 2016 starters

Hi All

 

Thanks for the response to my question re Xmas Dinner, it is a very expensive meal and has to be confirmed and paid (my ex boss always pays) by 14/11 which is obviously way the before the actual date, so have decided not to go, would hate the thought of all that money being wasted, thinking about going early and having a drink with everyone instead.

Hugs  Mary x

Sus12
Member

Re: October 2016 starters

Hi Sue B. I'm 6 days in after my first chemo and still very nauseous too. Also been told by someone (chemo nurse from somewhere else) that the anti sickness med I'm on is rubbish and that I need to make a fuss about it as although feeling sick for a few days is common, this bad and this long is not! Am going to phone to ask to see the oncology doc this week. Anyone else been very sick for longer than a few days?
Fairycake glad you are finding the thread helpful. The actual day won't be as bad as you fear but you do need someone with you for support. Day 1 may be one of your good days. Chemo affects everyone differently so it's hard to tell how you will be. Maybe suggest to your daughters they read the Breast Cancer Care booklet 'In it Together '(can download for free). My daughters read it and it helped them to understand how I might be feeling and how best to support me. They also have a service called 'Someone Like Me ' and that can help with just talking to someone who is a 'buddy' and who has been through a similar experience to you. Your chemo or breast nurses will also know if any local groups to you. Are you cold capping? If so take something warm like a soft blanket and give the unit a ring to see what you need to take with you on the day. Also take plenty to read / keep you occupied. As Sue (Truey) says drink plenty and get used to drinking about 2 litres a day if you can before, during and after the chemo as it helps to flush out the 'nasties' quicker.
Hope everything goes OK for you tomorrow.
Lots of hugs, Sue xx


Khajista
Member

Re: October 2016 starters

7 days post first chemo ( AC regeimn), feeling quite ok. Mouth soures now, but not that bad. Little restless at night until i eat any anti-acidic medicine. Liking fruits alot speacially pomegrante, but not liking spicy foods any more. Over all i am doing pretty well and my daughter did not take any off so far from work (which she was assuming she has to , to take caare of me 🙂 )

Stay stroong ladies, this too shall pass. Prayers and love for everyone. I am still looking to see if i can drink milk , or it will disturb my stomach.

Sue H-S
Community Champion

Re: October 2016 starters

Hi Maryminder,

So glad you have someone looking after you, as the further through the cycles you go - I am sorry to say - fatigue really does get the better of many of us.

As to eating out - it has  to be your decision - and you may wish to think about when in your cycle it is, too - i.e. preferrably a couple of days post your treatment (whilst still on steroids) or post day 14 of your previous treatment.  Perhaps also no hugs and kisses...If anyone has sniffs or a cold, you may be more likely to pick them up. You might wish to check whether the restaurant has a food hygiene rating. If it has, if may give your husband more confidence. 

I still ate out post chemo 2 without any ill effects. Post chemo 3 - I was simply to tired, but did go for the odd pub lunch. Try and stay away from soft cheeses, seafood and salads, preferrably no alcohol, although the odd glass of bubbly might be a good 'pick me up'. 

It generally is not about not eating out - just about taking care that they are hygienic places and not eating food, which is more likely to carry specific bacteria, which we might not be able to deal with.

Hope it is of help and hope you feel well eough to go.

Hugs

Sue xx

Joandthetribe
Member

Re: October 2016 starters

Sorry Gracie - I forget who I have talked to about double mastectomy! I am a bit of an over-sharer and often repeat myself 🙂 I have read (and was told) that lumpectomy + radiotherapy is as effective as mx and i believe they have some fairly robust stats to support this view. It's difficult trusting what they tell you sometimes isn't it? I'm sure you'll make the right decision for you. X
blueash
Community Champion

Re: October 2016 starters

Hi Mary,

 

After my 3rd session I did not feel like doing anything because that was the day my side effects kicked in and they get worse as you go along. BUT you can tweak your steroids  and take a lower dose for longer if you really want to go out.

 

If it has to be booked and paid for in advance I think I would decline because I would hate to put anyone to that expense and the chances are I would not be going.

 

Your side effects get worse because you blood count gets lower and lower with each round of chemo. Mine got so low they had to stop chemo early.

Truey
Member

Re: October 2016 starters

Hi Fairycake,

 

I started very late in September so am more in line with this group. I'm at Day 9 of cycle 2 of FEC.

 

I would make sure your children know that you might feel reasonably OK on days 1 & 2; at least that has been my experience. I feel worse on days 3 to 8 so they need to be aware that if you seem alright at first, you may need more support later.

 

Compared to others on here, I have got off quite lightly thus far. My couple of tips are:

 

Wear warm clothes to the chemo. Unless you have a line in, they will need to cannulate you and being warm makes easier access to veins.

 

Drink loads......during my first chemo I visited the loo 4 times in 3 hours! Probably a record because I was also very nervous but the nurses didn't mind at all even though the drip stand squeaked embarrassingly every time I wandered across the room..........It is good to flush the chemo through as fast as you can. Keep drinking when you get home. It may mean you have to stay in but I'm sure all that through put helped my body cope with the chemo.

 

I was terrified and the session really wasn't as bad as I thought. Good luck and lots of hugs. We will all get through this and time goes quickly.

 

Sue

maryminder
Member

Re: October 2016 starters

Morning All

As this week is my Low Immune one am trying to avoid people and places where i might at risk, so as the sun is shining I am going to go out for a walk and enjoy it. I have had low points since my first chemo last week but like some of you not as bad as I was expecting (hope I haven't just jinxed it), no nausea but feel really hungover and woozy most of the time, got on the scales this morning and have lost 5lb in just over a week although I am eating, is this normal?.

 

Sue H-S I am lucky in that there is always someone willing to come with me and on a good day the hospital is within walking distance.

 

A question, I have read that it is not advised to eat out during Chemo because you can never be sure re hygiene etc but I have been invited to a Christmas Dinner by my old Boss (i took early retirement in March) and would love to go, the restaurant is very highly rated and I would stick to hot food rather than the cold buffet, it is 3 days after my 3rd Session, hubby is saying no, what do you think ?

Best Wishes and Hugs to all

 

Mary xx

fairycake2
Member

Re: October 2016 starters

Hello all, I haven't posted here before but have spent an hour or two reading the whole thread and feel I know you all already! I have my first chemotherapy tomorrow and feel rather tearful about it. I am worried that my kids (aged 21, 24 and 28) won't really look after me if I'm I'll. that sounds dreadful but, of course, they have never been ill in their life so really have no idea. My husband is away for work so I shall be reliant on their tender mercies. Of course they are busy, but the oldest is coming home to be with me for a couple of days. I so wish my mother was still alive. 

It sounds as though most of you have had a lot of practical support from the chemotherapy team and breast care nurses, that has not been my experience at all. The nurses at the chemo unit have not made any suggestions to what to bring or how to prepare so I'm taking on advice here. Thank you to ask of you who have been so generous with your time and information.

suebond88
Member

Re: October 2016 starters

Morning everyone.

so upsetting to read about the awful side effects some of us are experiencing (I know we're told to expect them, but it doesn't make it any easier to deal with).  I think I must be getting off lightly compared to some!  One week on, no sign yet of hair loss, I am still nauseous -my daughter is a paramedic and has told me to ask for a stronger antiemetic as the one I've been give 'is rubbish'!  Having midcycle bloods tomorrow so will mention it then.  Gracie, the yoga I'm doing - you don't have to be bendy at all, I'm 58 and have arthritis in my thumbs so I cannot weight bear on my hands, but I just adapt the routine to suit what I know I can do.  A friend sent me the DVD  via Amazon 'Yoga for Breast Cancer - from surviving to thriving'.  I've done the routine twice now, and found it very helpful - gentle stretches (taking care of scar tissue), simple movements, nothing strenuous.  I was actually so relaxed at the end I nodded off!!  Worth a try👍

Liz, hope your first Chemo goes well.

hugs to all.

SueBxxx

Gracie
Member

Re: October 2016 starters

Oh my word, Sudzi, that sounds awful. I can't give you any advice, as I haven't started yet, but I feel you should go back to your chemo unit rather than your GP, as they will have the expertise. I hope they can quickly get it cleared up for you.

 

Jo, I think we've talked about the mastectomy or not issue before. I cant say I'm really determined - I just cant get my head around what all the experts are saying - that there is no difference in outcomes. It doesn't make any sense to me. I'll raise it again with my consultant. I'm pleased you are happy with your choice.

Sudzi
Member

Re: October 2016 starters

Hi all,

 

I had my first round of chemo two weeks ago. It was nowhere near ax bad as I had imagined it was going to be. So that was a bonus.

4 days later I had viral infection, big lumps/spots on left side of my face and neck appeared the next day, don't know if this was the virus or the chemo.

I seen GP but was not given anything for it.

A week after the first round I started to get a sore scalp, it was stinging and I had a lot of blisters on my head. Then on Friday my hair started to cone out and by Saturday morning I was completely bald. I can't wear my wig just now as it irritates my scalp, blisters have burst and now have lots and lots of spots on my scalp. Has anyone else had this?

My next round of chemo is on Friday and I have a head cold, will I still be an'll e to get my chemo?

Joandthetribe
Member

Re: October 2016 starters

Welcome Liz. I promise chemo will be nowhere near as bad as you think it will. Just be kind to yourself and allow yourself a few days in bed/on the sofa to recover and sleep. That's all I wanted to do anyway 🙂

 

sel84 - shaving my hair was actually very liberating and as with most things have been on this 'journey' so far, not as bad or traumatic as I thought they would be. And yes, I also had a very dry mouth and throat, I didn't find anything that made a huge difference other than just keep sipping squash and fizzy flavoured waters. I was told paractemol okay to take as long as you take your temp before you take them to make sure it's not over 37.5. 

 

Gracie - I had a double mastectomy even though I 'only' had a 1cm tumour in one breast. I have a strong family history and couldn't get my head around the worry and stress. I had to push for it and have a psychological assessment but finally got one and am thrilled with the results and feel completely at ease with the decision. I would recommend pushing for a mastectomy if you feel strongly about it. 

Sue H-S
Community Champion

Re: October 2016 starters

Hi Sel84,

Sorry you are experiencing some of the more common side effects.

Whether you take Paracetomol or Ibobrufen, both are likely to mask a temperature. You only ought to take them, when really neccessary. Paracetomol would be better, as it is not so hard on your stomach.

Dry mouth - unfortunately the only thing I found helping were small sips of liquid on a regular basis.

As to the possible mouth ulcer - at this time it might be an idea to go for the over counter stuff. But it might be worth monitoring - particularly on the next cycle, as you may develop oral thrush. Ensure you have absolutely faultless oral hygiene and use a non alcohol anti bacterial mouthwash - that may help.

The headache may be due to your follicles 'going to sleep' and it shoud get better, when the hair is mostly gone. Although one may not think so - hair does have some weight - and it appears, that the longer it is, the more likely people experience headaches and sore scalps.

I had my hair shaved off a week before I started chemo - it rather suited me - and now when it is regrowing I am likely to keep it that way. Sinead O'Connor eat your heart out!

Hugs

Sue xx

 

elisan
Member

Re: October 2016 starters

Hi all, it looks like I am going to be with you in the October starters after all. Following my chemo being delayed last week, I was seen at clinic today and good to start tomorrow. Obviously apprehensive but reading all your updates has been informative and useful for me.  Fingers crossed for not too many side effects. Big hugs to everyone

Liz x

Sel84
Member

Re: October 2016 starters

Jo, you seem very brave to shave your hair, I have thought I would do the same when the time comes. Today I went and had my hair cut to shoulder length as I was fed up of my hair moulting so much from coming off the pill. It doesn't feel as strange as I thought it would at this length.

I thought I had a sore throat coming on today but I think it is an ulcer, I have also had quite a dry mouth most of the day, has anyone else had this issue? Any tips for getting rid of the horrible dry mouth would be great. Also, I was told it is best not to take paracetamol as it can mask a temperature, is it OK to take ibuprofen for a headache?
Gracie
Member

Re: October 2016 starters

Just to add, I start tomorrow. My port was checked today and the surgeon was very pleased.

 

I'm still a bit concerned about why I haven't had a mastectomy. I have had two different breast cancers in a year and I know this one is as aggressive as it is possible for a breast cancer to be. I really can't get my head around how it can possibly be as safe for me to keep my breasts as it is to get rid of them both. I find it a bit baffling.

Gracie
Member

Re: October 2016 starters

Sam, thank you for letting me know how you got on with chemo whilst in ketosis. There seems to be some scientific evidence behind it (although my oncloncologist is not a fan), and there isn't any harm in it, so well worth a go. Good luck with your next chemo.

 

I was going to set out what it means, but I see Blueash has given an excellent explanation. For those of you who are interested, it doesn't mean you have to starve yourself, but you have to avoid carby foods, so no bread, potatoes, rice, pasta, cakes, etc. In fact, you really need to check the carb value of everything you eat, until you get the hang of it. Be aware that you will get headaches for a day or two, but once you are in ketosis, you can feel really well on it. A bonus for me is that it might help me stop putting too much weight on. I'm already overweight and was gradually losing weight before diagnosis. It's not about starving yourself at all - there are lots of lovely things you can eat - fresh cream, for instance! 

 

Having said all that, it might not work for me and I may end up eating cake and biscuits all the way through.

 

Mary, your experience with that nurse was absolutely shocking. You are NOT being awkward. I'm pleased it has been sorted out for you.

 

Suebond, I have been thinking about yoga. I don't bend very easily, but I'm willing to give anything a go!

 

Gracie

Sue H-S
Community Champion

Re: October 2016 starters

Hi maryminder,

you are not being awkward at all! I am so glad to hear you have been able to put things into place.

Do you have someone who can take you to the relevant appointments? I do hope so, as further down the line, you might be too fatigued to drive - that is one of the reasons, why I had to fall back onto the community team. They were absolutely brilliant - not always on time (which is understandable) - but brilliant.

Hoping all stays well and that you are being treated the way you should be - i.e. with a lot of care. We so need it at this time.

Hugs

Sue xx

 

assaritti45
Member

Re: October 2016 starters

Hi Ladies

 

Jo i started bleeding today too, i was expecting it all to stop so seams like having  chemo wont effect either fertility or wont send me into menopause. your 2 days infront of me i aint started losing hair yet but know it will be soon.

 

Mary omg what is going on you do seam to be having trouble, one reason why i would rather not have a picc line as having it flushed seams so much a lot of hassle.

 

how is everyone else doing. xxx

 

 

maryminder
Member

Re: October 2016 starters

Hi All

 

Have had a call back from the MDCU re my Picc Line appointments, spoke to the Ward Sister she was so apologetic and said that it was totally insensative and out of order, now have appointments right up until the end of November for both flush and bloods, if the community team come up with something i can get to then I will go to them.

Still feel like I am being awkward, but thats me unfortunately, just hope nobody else is upset the way I was.

Hugs

Mary xx

blueash
Community Champion

Re: October 2016 starters

Ok about ketosis. If you cut back on carbs for about 48 - 60 hours your body will go into a state called ketosis. It is the basis of many weight loss diets including the Atkins and the South beach. The theory being that if you do not give your body energy via your food your body will spend what it has stored on your hips, thighs and tummy. You have to go below say 50 grams per day which is not much at all.

 

If you don't want to lose weight and want to limit chemo side effects you can fast for 48 - 60 before and 12 to 24 after then eat normally. You will also be in ketosis.

 

Now then if you want to lose a lot of weight you will have to eat something so you limit carbs for weeks or months. If you only want to stop side effects you can either fast (definitely works for me) or try limiting carbs which may or may not be as good as fasting depending upon you as an individual.

 

Low carb eating can be sustained for very long periods of time. Fasting cannot. Both put you in ketosis.

 

Put  the name Valter Longo into a search engine and read up for more info.

Joandthetribe
Member

Re: October 2016 starters

Hi everyone 🙂

Wow this thread is busy! I am struggling to keep up with everyone. Can you believe there is now a November thread? Time is ticking along which brings us all one step closer to our treatments finishing - soon we'll all be old hands and able to provide support and help to others going through their first scary steps.

In spite of doing the cold cap I started to experience quite heavy shedding over the past few days. No real noticeable bald patches but my hair looked a bit like it had been chewed by rats - not a good look so I decided to take the control back and shave it all off last night. I got all the kids involved with the cutting and shaving which definitley took the fear away for them, and my husband enjoyed using the clippers faaaaar to much! I am now rocking one of my long ombre wigs and feeling really okay about it all. Needless to say I won't be cold capping next time.

I have an appointment with the specialist nurse on Friday where they will take my bloods ready for my next session on Monday 31st. I will be discussing all side effects with her and hoping I can get some stronger anti sickness meds this time around.

In spite of having the zoladex injection I had a period this week? Will be discussing this with them too. Has anyone else had any bleeding?

Good luck to everyone having treatments this week or next - praying for minimal side effects for you all.

Jo xx
Sue H-S
Community Champion

Re: October 2016 starters

Hi Skye

welcome to the thread - mind you in some ways, you may wish to jointhe November thread, which was put up yesterday. I do not think anyone is on it yet, but at a good guess - will be soon.

https://forum.breastcancercare.org.uk/t5/Chemotherapy-monthly-threads/November-2016-Starters/m-p/105...

However, you might the information, which starts the thread off, helpful.

I might be wrong - but I guess that the DH - stands for Docetaxel and the H for Herceptin.

So it might be that you are getting FEC-T chemotherapy - 3 x FEC and 3 x T And Herceptin injections?

It may be wrth asking your treatment team about this, 

Here is a link to information about FEC-T - https://www.breastcancercare.org.uk/information-support/publication/fec-t-chemotherapy-bcc233

Please remember - you are unlikely to get all of the side effects - it is very individual and depends much on your age, general state of health and underlying issues. So you may not wish to over prepare.

I certainly would suggest some ginger to help with possible nausea and Senna to deal with likely constipation on the FEC. Drink at least 2 litres of water before your first session - and continue having 2 litres per day throughout your cycles.

You may wish to make decisions re cold capping or prepare for losing your hair. Should you not deide to cold cap, getting your hair cut as short as you possibly can, before you start your first chemo can be of much help. As it eases the symptoms of itching,soreness of the scalp and headache, when the hair follicles 'go to sleep'.

I hope all goes well for you - you are i a great place for support and asking all the niggling little questions you have, when you start your treatment. Please also post, when you are upset or not feeling well - we are here to help as much as we can.

Hugs

Sue xx

Mumofmany
Member

Re: October 2016 starters

So I had my picc line flushed and dressing changed yesterday by district nurses, she must have pushed the line in a bit more than it normally is and the clip is touching thenpointbwhere it enters my arm I thought it would be ok but no here I am wide awake as everytime I move it pinches and pulls the skin so looks like it's a phonecall to them again in morning to ask them to come and redress it for me 😔
Skye
Member

Re: October 2016 starters

Hi Everyone

 

Im starting Chemo on 31/10 - next Monday!! Eek it all seems so real now. Been told it's FEC-DH, not really too sure what that involves, but so glad to be getting the ball rolling. 

 

Been told that I will be given bisphosphonates tablets too as well as injections to ensure white blood cells don't drop too low. 

 

Feeling anxious but at the same time want to get it over and done with. 

 

Good luck and hugs to everyone xx

 

Skye 

Sue H-S
Community Champion

Re: October 2016 starters

Hi Mumofmany,

Unfortunately I cannot answer your question re ketotis -I think that is something to do witha specific fasting regime, some people use.

I personally prefer to eat healthily and balanced and found lots of little meals, especially toast, waterbiscuits - i.e. carbrich foods, helped. However, I would suggest you have a chat with your chemo team, as they may give you different medication to help with your nausea. It should not last that long. Tiredness and/or fatique, unfortunately cannot be dealt with medically. It is, what it is in the first 10 days or so. The body has a lot to contend with, considering what chemo is and does- so it is quite normal to feel like it for many.

Rest as much as you can during that time and be kind to yourself.

Hugs

Sue xx

Sue C
Community Champion

Re: October 2016 starters

Hi Mary

So upset that you have to be treated like that. I think you need to phone your bc team, don't assume it will be sorted for you.

Sending hugs x

Sus12
Member

Re: October 2016 starters

Hi Mary. Not really what you need to be told or deal with when you're going though everything :(. Our community team no longer come out to do the flush or the dressing or my white blood cell boost injections. I have to do the injections myself and go to the chemo unit to get everything else done. You could phone the district nurses if you a number for them to see if they can come out to you (not all of them are trained to do though necessarily) but I would phone the chemo unit as they might be able to help you to sort things out. They're there to support you and I'm sure they will.
Big hugs,
Sue xx
Vintage
Member

Re: October 2016 starters

Hi Mary
I have a community nurse come to my home 2 weeks out the 3 to flush picc line. And also day after each chemo to give me a single injection to help raise white blood cells . On the third they flush it in the chemo unit when they take my bloods.
There is also a driver service run by a charity in my area to get you to appointments. You should ask if the have this service and give you the phone number so you can contact them.
Hope you can get it sorted out. It just puts more pressure on you when you are feeling bad enough.
Hugs V x
maryminder
Member

Re: October 2016 starters

Hi

Just back from hospital I am so upset and angry right now I feel like screaming, had to have my line flushed at the hospital today as the closest Community appointment was a 30 mile round trip and forgive me but I am not up to driving that at the moment, asked the sister about my next appointment only to be asked if I drive so I explained about the distance and then told 30 miles is not that far and besides it's quite a pleasant drive,  then to top it all the sentance " don't I realise every time they do Picc line flush at the hospital it takes up a space for a chemo patient", I just walked out in tears and realised when I got home that I have no idea who to call about a new appointment.

 

Of course I know it's not ideal doing it at the hospital but she has no idea about me or my circumstances, I have actually put off phoning the Chemo Unit a couple of times about things as I didn't want to waste there time, so what do I do, do I wait and assume she will pass my details to the Community Team who will contact me or do I ring the Chemo Unit in the morning and get them to sort it.

 

Hugs Mary

assaritti45
Member

Re: October 2016 starters

wow mary you lost them really fast.

 

i am day 13 now and well i have small itches i have not lost any hair anywhere yet just normal shedding totally dreading it thought, i know its going to be a cry all day day when it happens 😞 i dont know why i cant just accept it and get on with it. without my hair i am nothing 😞 i feel so naked. xx

Mumofmany
Member

Re: October 2016 starters

Thanks sue
I am day 14 today and my head has been itchy but i put it down to needing washing so maybe the folicles going to sleep as you mentioned, what is the deal about ketosis I really suffered with nausea and fatigue for first 8 days what do uou do and avoid etc I might give it a try for next time x
Sue H-S
Community Champion

Re: October 2016 starters

Hi Mumofmany,

the hair tends to go from everywhere - and I mean everywhere.....

Usually it takes about 14 days for the scalp to feel itchy and/or sore - which seems to be the sign that the follicles are going to sleep and the shedding is likely to start.

A good idea would be to have a sleep cap, light weight beany or something similar for going to bed. It might avoid having to find all the lost hair on the pillow and having to hoover the bed. 

Some lose most of it towards the end of cycle 1 sometimes some of it hangs on until during cyce 2.

I lost all body hair, however another lady going through exactly the same regime - kept her leg hair, much to her annoyance, lol.

You are all doing so well facing this - I guarantee you - it comes back! Mine is growing again - all over - and it is not patchy. Slighly different colour - not blond, but dark and white, lol. I have eyebrows again (7 weeks post last chemo) although they are not growing in the right direction! - Taming required! And I have used mascara for the first time, since I started chemo. Very short lashes - but lashes all the same!

Hugs

Sue xx

suebond88
Member

Re: October 2016 starters

Hi everyone,

i slept/lounged most of the weekend too.  Am day 6.  Still nauseous, but got my husband to take me out for a quick lunch today - nothing huge, because I'm eating 'a little, often' with the nausea.  Tablets helped at first, but don't seem to be very effective now 😒  Intend speaking to my nurse.

No hair loss for me yet, but I think it is 'early days', but am keeping my fingers crossed as I am cold capping.

managed a simple 'yoga for breast cancer' session today (at home), and it certainly helped wake me up a bit!  Am preparing a base stock now in the kitchen!!  Am normally very active, and finding it hard to 'look after myself' and stay at home.  Trying to find the right balance.

hugs to everyone having a treatment this week

SueBxxx

Primmy
Member

Re: October 2016 starters

Hi Gracie

 

I've been reading this forum for a while but this is the first time I've written on it. I was diagnosed end August with ER+ and PR+ grade 2 tumour which had spread to 2 of the 12 lymph nodes that were removed.

 

My chemo is EC-T (so I don't have the 'F' of the FEC) with 3 cycles of EC then 3 of T. Had my first chemo on 6th October and, like you are planning, I am low carbing and was in ketosis for the few days before chemo and continued doing it after. I have keto sticks which you wee on which measure if you are in ketosis. I resisted all the snacks they bring round in hospital and had an omelette when I got home rather than anything to eat whilst in there. For me, I'm sure it had an effect as I've had no side effects at all, and have felt completely normal throughout. The oncologist was quite baffled in my follow up appointment! I've done loads of research on this since my Mum also has breast cancer and I'm the sort of person who has to try and find ways to complement standard treatments.

 

I've got my second chemo this week and have made sure I'm back in ketosis so I'm hoping for the same results. I wasn't going to post until after that in case it's not so good this time and the first time was just a fluke but seeing your post I wanted to give you the encouragement to try it.

 

Good luck for Wednesday!

 

Sam

Mumofmany
Member

Re: October 2016 starters

Has anyone expirenced any hair loss yet I had my first chemo EC on 10th and so far not lost any from anywhere does it go from legs and arms too x
maryminder
Member

Re: October 2016 starters

Hi All

 

Feeling slightly better today having slept most of the weekend (literally), spoke to the Unit this morning about the sudden change after stopping the steroids and they have said they will probably keep me on them longer with my next session. Have lost hair to my eyebrows, arms and legs and have thinned a bit on my head so far so good.

I did think about fasting but decided it wasn't for me, so will try small snacks and Miso Soup which I have heard is very good, strangley enough have completely gone of Coffee so just drinking water and fruit juices.

Hospital this afternoon to have my line flushed and then home to catch up on some TV,  unfortunately my son is having day surgery next week in Liverpool and I live in Sussex, normally I would go (he lives on his own) and make sure he is ok (I know he'd probably rather I didn't) luckily the hospital have said he can have a bed for the night and then he will come down here for a while, happy happy joy joy (silly I know).

Hugs and Best Wishes

Mary xx

Gracie
Member

Re: October 2016 starters

Thank you, Sue. 

 

Yes, I'm sure you are right about the food, but I thought I would give it a go.

 

Just about everyone seems to think the risk to my right arm is very low as I had just the two sentinel nodes taken from the breast area. I had 19 nodes removed from under my left arm, so I seem to have plenty of them.  I'm very very very right handed though, so am more concerned about that one. I have allowed blood pressure readings to be taken from my right arm. Should I make a fuss about that, do you think?

Gracie x