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Starting chemo May 2014

Re: Starting chemo May 2014

Hi Wax2014,

 

Re periods...I was just warned that the chemo can bring forward the menopause. I hadn't had a period since June 2013, so was surprised to get this really heavy period almost immediately.I don't actually know if I have been through the menopause completely as they say ask your mum and my mum has advanced alhzeimers, so she wouldn't remember bless her. Other than my periods stopping, I hadn't had any other menopausal symptoms at all.

 

Ladycroft ,my mouth has been really sore th epast couple of days, but not white and furry.I was told to use cordysol mouthwash and gentle brushing, but it is still sore.

 

Still feeling tired but have read that day 5 should be lowest point after chemo session, so day 6 now for me and hopefully will not feel so tired soon 🙂 xx ruth xx

Re: Starting chemo May 2014

Hi all,
Been quiet lately as been away - mum-in-law stayed to mind 16 year old then for a couple of days after. My first TAC is tomorrow, bloods done this morning and started steroids. Family is waiting for the steroid high with bated breaths but no signs of it yet!
For Monty Python fans I can strongly recommend Spamalot - my oldest son took me to see it in January for my 50th birthday present and it was fab! Philosophers song is my favourite.
I think stress and steroids can play havoc with periods so not surprised they're going a bit wild for some of us. I had to have my Mirena removed as my cancer was progesterone receptor positive, so have restarted periods after 8 years with minimal to nothing :-(. I'm rather hoping chemo and tamoxifen will make them go away again!
Sheryl, so sorry you're still in hosp. Might be worth asking tomorrow if they should try a different antibiotic if there has been no response after several days of your current regime. Also make sure they chase up swab results etc, as that can help ensure the right antibiotics are being used.
Cooking lemon and rosemary roast chicken for dinner tonight - last one before taste goes all funny/sickness etc kicks in maybe?
Anyone else out there having TAC - or is it mostly FEC?
Cheers Jo x

Re: Starting chemo May 2014

Hi ladies, on day five now , steriods finished yesterday and feel really tearfull ! Started last night and burst into tears again this morning, all felt a bit too much..feeling wacked out doesn't help either. I have that horrid slimey mouth taste too which is leading me to crave food just to take the taste away..at this rate i'll be the size of a house by the time it's over!!
Ruth..My period has just not bothered to materialise so far this month..is that supposed to happen or am I likely to get the full force at some point? Hope your coping ok.
Sheryl..really do hope you can get some quality time away from the hospital today, here's hoping for some positive news tomorrow.
Oh and I must add..thank heavens for senokot! Couldn't be without it..what digestive system!!!
Anyway done some ironing having a cuppa and biscuit...there i go again! and probably a snooze. Back to work tomorrow..see how it goes.
Enjoy the rest of the break..Linda xxxxx






Re: Starting chemo May 2014

Ooh , I forgot , anyone else had weird little nipping pains in breast area that was operated on ? Since taking this Filgrastim injection I 've had lots .it's like it's knitting together,a bit like I'd imagine the  Skelegrow in Harry Potter works on regrowing broken bones . 

Re: Starting chemo May 2014

Day 6 , Felt awful earlier, tongue is now white and furry, disgusting taste in mouth and tum doing somersaults. Not feeling sick though,just 'Not right" .

Ruth- I went through the menopause in my early 40's (possibly because my periods started when I was 10!)so I'm glad that's over.

I'm a bit constipated too so have made my concoction which usually works for me.Bran, oats and fruit made into a porridge with cinnamon (I heard once that Cinnamon is really good for the stomach and since I love it and Ginger I eat lots )

Sheryl-the plans for the tunnel to break you out are in hand , just need the postcode !x seriously hope you get sorted soon.

Going to carry on wlth my gardening now and see if the aches subside . Whoever it was said'' Whatever doesn't kill you makes you stronger  '' well I'd like to know what he was taking ! 

Enjoy the sun girls , it'll probably freeze by Wed, 3 days of sun ,who'd have thought it .xx Jan

Re: Starting chemo May 2014

Hi Sheryl, I think you are totally justified in feeling frustrated. Enjoy your time out and will keep everything crossed for better results for you tomorrow, Gill X

Re: Starting chemo May 2014

Hi Sodastream,

 

You still sound so positive despite being in hospital, I hope all gets rectified soon xx Ruth xx

 

Re: Starting chemo May 2014

Hi Ladies
Hope you're all well and enjoying the beautiful bank holiday sunshine.
For me this is day 7 of being stuck in hospital although I have managed to escape for a few hours over the last 2 days (to enjoy the simple things we take for granted like sitting in the garden enjoying the sunshine, ironing and cleaning!!! And watching TV).
I'm on my 4th canular now as they keep going red and sore and in danger of infection which would be all I need. The DR has just been and my blood results show no reduction in my white cell count which is disappointing. Problem is it's bank holiday weekend and lousy timing as nothing seems to get done so am waiting for my regular DR to make decisions tomorrow.
As you can tell I'm frustrated and can't see an end to this, at this rate I'll be joining June or July chemo thread.
Right rant over pick myself up and look forward to my escape for 4 hours today.
Sheryl

Re: Starting chemo May 2014

Hi gmc,

 

I hit 5th day after 1st chemo yesterday and felt wiped out, but had been up most of the night with indigestion.

 

I am having a horrendous period though, first one since June 2013. It is literally gushing out of me like a tap every so often. The oncologist said the treatment can bring on menopause quickly and I did ring nurses a couple of days ago who said don't worry, but its easy to fret when something like this happens.

 

My mouth is also sore too and I am drinking loads of water anyway 🙂 xx Ruth x

Re: Starting chemo May 2014

Hi Ladycroft - I too am on day 5 (if I count chemo day as day 1 - was on Wed). I have a bad stomach today and wondered if it was because the steroids finished yesterday. Also have blisters on the inside of my lips. Everyday brings it's surprises! Never a dull moment.Lovely to see the sunshine and have been for a short stroll round some bluebell woods our way. Does anyone know if we're still meant to drink 2-3 litres a day or was that in the first few days to flush everything through?

Best wishes, Gill

Re: Starting chemo May 2014

Hi Ladycroft,

 

I recently downloaded that Month Python Song lol. My hubby adores the Pythons, we were too late to get hold of tickets.

I hope to be seeing George Benson at The Royal Albert Hall in June, followed by 2 weeks in Cornwall in July, so heres hoping we all make it to those events that will give us a boost !!

Hope everyone is enjoying bank hol weekend xx Ruth xx

Re: Starting chemo May 2014

morning Ladies, Happy Star Wars day ! May the fourth be with you all.
Not feeling so great today , had that awful metallic taste all night and up every 2 hours to go to the loo and a gurgling tum. I feel quite a fraud when I read some of you girls stories, I think I' ve got off lightly. For the record I went for a routine scan on 2/12/13 and got a callback on 8/1/14 where they did a bioscopy. They found a 9 mm ttumour and was sent for a lumpectomy13/2 and to remove a few lymphnodes. I went back a week later and the surgeon said the margin wasn 't clear enough around the lump so they would have to go in again. The 2nd op was on 27/2and they found 2smaller ones ,one 7 mm and one 0.5 mm . The lymphnodes came back clear thank goodness. My oncologist told me the hospital had funding for a genomic test called Onco/dx which would be done in the USA and give them more info on which chemo to use.
This meant that my treatment would be delayed by a few weeks but I said yes. I used the delay to get away for a quick break to France to recharge my batteries and husband restock himself with copius amounts of red wine to see him through the long weeks ahead!
The results of the test made my onc change the course of treatment to Fec-T from Fec .then 3 to 4 weeks of daily radiotherapy after the 6 treatments . i'm currently on Day 5 of round one . I 've had no sickness just wind and apart from the taste and going off tea , a few aches( ,probably down to the gardening) I 'm pretty good. I applaud you all and wish you well. Like Sodastream the lovely Sheryl , I think I 'll make a facebook page, but this will be a most irreverent one,I shall post pretty pictures and some totally innappropriate posts which I hope will cheer you up. I have a crazy sense of humour and my ambition this 1st July will be to be sitting in the audience,at the age of 57 and 3/4 's at the first Monty Python concert at the O 2 and singing 'Always look on the bright side of life' especially as I paid a bloody fortune for them.
Watch this space and enjoy today as best you can xx

Re: Starting chemo May 2014

Hello there ladies.

 

Just following your thread and wishing you ladies all well in your treatment.

 

Logicienne.  I was also treated at a satelite centre from the Christie so live nearby and used Nicky Oliver who are city centre Manchester for wig fitting etc.  I think for the first one i had a 'Prescription / order' from Breast Care Nurse and just paid for shampoo / conditioner etc and then a little while after i purchased a second one.  Excellent service and the wigs were all Dimples.

 

Take Care and hope you are all having a relaxing weekend.   Gilly x

Re: Starting chemo May 2014

hi, thanks for explaining seroma to me , I hope you have a good weekend Logicienne xx Ruth xx

Re: Starting chemo May 2014

Hi Everyone !

 

I had a really bad night last night.It was my own fault as up until yesterday, I was erring on the cautious side and eating snacks little and often. Then last night around 7pm, I had pasta,salad and garlic bread and boy did I pay for it later! I went to bed at 10pm, woke up at 1am with the most awful indigestion and ended up sitting up watching a dvd and reading until 4am.

 

My poor hubby its his birthday today, but we are both tired so having an easy day today 🙂

 

Ladycroft, I applaud your energy levels tackling the garden, I feel wiped out today for the first time, so listening to my body and vegging out 🙂

 

Still burping like a trooper but no wind yet 🙂 xx Ruth xx

Re: Starting chemo May 2014

Hi Ruth, the seroma is a build up of fluid round my mastectomy site (at first it was like another boob had grown overnight!).

They put a needle in on the scar line and drain all the fluid off, which is great. It hasn't hurt so far as I am still quite numb from the ops I've had.

They are getting less off each time I go now and have said when it gets down to about 50 ml, my body should start to absorb it and get rid of it itself.

I guess it's as the lymph nodes that used to take it all away have been removed. I've been shown how to massage my arm/fingers etc to drain all the lymph fluid across my chest to other lymph nodes that weren't removed.

I also had drains in with a shoulder bag, is really nice when they come out, you can also much better!

Climbing Rose, hubby had an "interesting" day, we had the 2 youngest (2 & 10 months) off nursery with high temps, snotty noises and coughs and the eldest (5) at school.

I still can't drive yet after my 2 ops, so we had to drag everyone with us to the hospital. Seroma was drained ok, but the nurse then wanted me to get checked out at the Chemo dept, as my Hickman line which was put in on Tues had blood round it.

Went there and had it all cleaned up...Managed to get myself transferred from Christies to Bolton for my Chemo, which will make life so much easier with 3 little ones.

Also got some info on wig suppliers, there is a mobile one who is very highly recommended, so may give them a ring...

We only just made it back in time to pick the eldest up from school!

I managed a short lie down on the bed before it was time to take her to Rainbows for the first time, pleased to say she really enjoyed it!

Woke up with no headache and no sickness this morning but a really horrible taste in my mouth, will have to look through the boards for ideas to help with that...

Hope everyone enjoys the bank hol weekend! Kate/x

Re: Starting chemo May 2014

Jan- a lady after my true heart, one that sees a positive in every situation. I really laughed at the picture of you outside doing your gardening and making sure you get your money's worth in aches. At least I know by day 3 I'll be up to a bit of ivy clearing????
Still stuck in hospital but they're going to repeat blood test today so hopefully I'll get out of here soon. I am escaping today in between my 3-9 pm doses and am planning on sitting in the sunshine whilst I still can before chemo starts.
Sheryl

Re: Starting chemo May 2014

Good Morning Ladies, hope you all ad a good night. Only up 4 times for a pee last night.
Gill -I bought my awning on Amazon ,we only have a small deck so bought a 2m one . Looks sturdy and came within 3 days was about £90 but i had some vouchers from Xmas. Needs 2 people to fit it. After my rest yesterday morning I went out with husband and we cleared another part of the garden and chopped a ton of ivy down. Must have looked hilarious,zombie white face due to Factor 50 suncream, sun hat with neck shield wellies and work gloves! MadI know but I figured if the injections were going to give me aches I might as well get a few more. Upshot was we now have more growing area for all the plugplants I'd brought on and a nice lazy afternoon watchinh telly followed by fish and chips then Gogglebox before bed !

Hope you get out soon Sheryl and an make a start.
The injections i'm having are to build up the immune system and since taking the first yesterday I have noticed a funny metallic taste in my mouth. Will see how I get on today, still windy ,both ends now !
Try and enjoy your weekend girls xx Jan

Re: Starting chemo May 2014

Hi Ladies,

 

I must admit I have nothing planned for this weekend as I wasn't entirely sure how I would be feeling. I have been told to stay out of direct sunlight due to one of the chemo meds, not sure which one.Also been told to avoid 'sharing' public buffet haunts and not to have anyone round with colds/bugs.Is anyone else told this or is my oncology consultant just being over cautious?

 Also have been feeling really tired but prob more to do with waking up for a pee at night, which I never usually do, then as I have had 6 hours sleep by then, staying up until early hours with a cuppa reading and watching dawn arriving ! I am usually an 8 hour a night girl and out for the count !

Sorry to hear you had to return to hospital re your infection gmc, hope it gets resolved soon.

What is the seroma drain>? I had a drain on my armpit involving lymph node removal for 8 days, lumping a bottle around in a shoulder bag !

 

Hope everyone has an enjoyable weekend xx Ruth xx

Re: Starting chemo May 2014

Hi Ladies,

Had to go back to hospital today as infection in breast still not cleared up and they wanted me to have further blood tests and be put back on anti-biotics before the immune system packs up or whatever it does. This was picked up following a call from the chemo team who rang just to ask how I was getting on following 1st session on Wed. All very caring. I'm feeling very much like I've got the hangover from hell without the enjoyment of the night before - and also what I think is Chemo brain. Keep coming out with the wrong words and forgetting what I wanted to say!! Also getting constipated due to the anti sickness pills but I'd rather take them and tackle the other issue with some high grade laxatives! Burping too still. Rennies seem to help a lot.

I've noticed a few of you are having injections after your chemo and wondered what they are for - being nosy!

Ruth - Isn't it difficult trying to plan ahead for holidays/breaks etc.Having had to cancel our week in Tenerife I'm reluctant to try to re-book a holiday but I'm keen to stay a few nights with my brother in Tavistock but it will have to be later in the year now and at short notice. Good luck with sorting your out.

Sheryl - make sure when you have your escaped moments from hospital you do some nice things for yourself. You must be climbing up the walls in there.

Climbing Rose - have fun away in Southwold. We haven't any plans this weekend but will definately go out somewhere. The RHS gardens at Wisley are beautiful this time of year so may suggest that- with a shed load of handwipes and gel!

Linda- I admire that you even tried work as I'm afraid I didn't even give it a go, even though I only work a couple of days a week now. I do feel very tired so will extend the sick note even further I think.

Jan- What a caring other half you have re the awning.If you don't mind I'm going to show my OH your post and see if that might inspire him to do similar.

Logicienne - Hope you manage to get your seroma drained today. It's such a relief when it's done to be able to feel more comfortable although I must admit it does hurt me a bit later where it's been prodded about.Luckily mine seems to have settled itself now - just left with this slight infection.

 

Happy Bank Hol weekend everyone and I will drink an alcohol free toast to all my new found friends!

 

Gill XXX

 

Re: Starting chemo May 2014

Climbing Rose enjoy your weekend in southwold, we go to Aldeburgh a lot both lovely xx Ruth xx

Re: Starting chemo May 2014

Sodastream,
Keep your spirits up, sounds like you are doing fine and will be home soon fingers crossed xx Ruth xx

Re: Starting chemo May 2014

Hi Ladycroft,

 

Is that the injection you administer at home the follwing day after chemo? If so, I was lucky as my close friend is a nurse and came and did the injection for me, as I am a bit sqeamish 🙂

 

We will soon get used to it all and heopfully keep in good health too 🙂

 

XX Ruth xx

Re: Starting chemo May 2014

Hi Ladies
So good to hear how you're all doing following your first chemo sessions. It really helps knowing what to expect and what is normal. I'm one of these people that is usually full of gas and of the opinion better out than in so I'd better warn the family things could get windier.
Jan your post made me laugh as I was tired reading all that you'd been up to before 8.30 and expect it would tire anyone yet alone someone starting chemo. Remember to try to take it a little easy on yourself.
Interesting the comment re the steroid as my friend that had cancer a couple of years ago said she stopped taking them as they kept her awake despite her feeling sooo tired.
I'm still in hospital trying to get my biopsy infection under control and they've said I'll be in all weekend now but I did manage to negotiate a couple of get out of jail free cards so I can pop home inbetween doses to get some washing and chores done. Hubby and kids are trying so hard to keep up and I feel a fraud lying in hospital feeling 100% whilst they're trying to keep on top of things. The oncologist came to see me today to explain although they want to start chemo ASAP they can't whilst white cell count is up so praying it's back to normal in the next week or so, so I can start.
Just been down to nuclear medicine to get radioactive dye injection ready for my bone scan. Feeling rather immature as I'm dying to find a dark cupboard to see if I'm glowing in the dark!!!
Hope you all have a wonderful bank holiday and the symptoms continue to ease.
Sheryl x

Re: Starting chemo May 2014

Morning all,

 

Day 3 for me. Went to bed at 9pm again and woke at 3 with a headache and needing the loo, but managed to drop off again after taking some paracetemol. Needing to eat every 2 hours to avoid feeling sick even though taking all the meds. I had one injection to do the day after each FEC session and it wasn't too bad - the nurse gave a demonstration with a spongy thing and a demo syringe but it's not quite the same doing it on your own body.

 

Fowey: I had an early mammo at age 47 due to my family history which was clear, so I'm glad yours was found through screening. 

 

Wax2014: I am lucky to be signed off work until mid-May so don't have to think about that - you should take all the time you need (if you can). 

 

logicienne: Hope you are doing something nice for your hubby's birthday. 

 

We are off to Southwold tomorrow for 2 nights, having had Kwikfit round this morning to put a new tyre on due to a nail in it, so hope nothing else happens before we go. Looking forward to fish and chips on the seafront and not too much rain. Hope everyone has a good weekend, whatever you are doing.

 

Lorraine x

 

 

Re: Starting chemo May 2014

Mine's on 20th too. Had a real struggle with first syringe as no instructions on how to remove casing and botched it Hubby tried 2nd one and we got got it to work eventually . Good luck if you need them ! x Jan

Re: Starting chemo May 2014

Climbing Rose,

 

I had a 8mm lump so had a lumpectomy and also had 11 nodes removed, 10 of which were affected. You and I are on exactly the same treamtent plan, except i am having 4 x Fec, 12 x Taxol, follwed by Tamoxifen. I too also had my surgery on March 31st and a portacath fitted. I found the portacath more traumatic than the op as I was only lightly sedated under a huge blue blanket and could hear everything going on around me, which unnerved me !

 We were booked to go to Cornwall 28th June, but it interfered with my chemo session timetable, so we have pushed back to 5th July in the hope we can still go.

I have two daughters aged 19 and 22, both of whom have been remarkable, as has my hubby. I am 53 and the 3 yearly standard mammogram picked my lump up, so I was really lucky that it fell when the lump was too small to even feel it.

My next session is on May 20th, good luck with yours xx Ruth xx

Re: Starting chemo May 2014

Hi Wax2014,

 

I had my first fec on Tuesday which went okay.I had a portacath fittled beforehand, but wound was a bit sore still. The anti sickess drugs do help, I have just been burping alot and peeing alot more too.

I usually sleep like a log but I am sleeping fitfully as I wake up needing the loo after 5/6 hours sleep then dont feel tired, sit up and read or watch tv and catch up later in the day 🙂

My next session is May 20th, good luck with yours xx Ruth xx

Re: Starting chemo May 2014

Hi Ladycroft,

 

Same here, I had first chemo session on Tuesday, felt great Wednesday and did loads of things, but then I have felt tired yesterday and today. Like you I am burping alot which I dont usually and peeing alot more. I havent done too much to my hair, just washed in gentle shampoo. not put any products on it or blow dried at all. I did have the cold cap on Tuesday, but it apparently takes a couple of sessions to see if its working.

So I have been trotting out all my fave books and dvd's and friends have been visiting and doing some of my chores for me.

Have you been told to avoid sun too? I have, but I am not a sun worshipper anyway 🙂 my next session is due May 20th. Good Luck with yours xx Ruth xx

Re: Starting chemo May 2014

Morning ladies, had 1st Fec yesterday but apart from feeling a bit sickly was ok and had good nights sleep. They did have problems hunting the vein which has left me bruised, will see how iy goes next time but may have to have a line put in.Feel really tired today but started the steriod and anti sickness tablets as instructed and can not sleep.!!!! Rang in sick today couldn't face work so mums coming round..it'll give her something to focus on aswell...so far ,so good ..no major problems for anyone, have a good weekend..Linda xx

Re: Starting chemo May 2014

Hi Logicienne,

 

Thanks for explaining that.I know Angeline Jolie had a double mastectomy as did Michelle Heaton from Liberty x but not sure of reasons why, who knows really why some do and so don't 🙂 My consultant seems to think that mine is all mixed in with my peri menopause, but obviously cant be sure.

I hope all goes ok for you xx Ruth xx

Re: Starting chemo May 2014

Well 2 days down after first seesion of FEC-T sleep ok, stayed in bed yeaterday afternoon and watched films I'd been meaning towatch for ages. Ate well and peed a lot also burping ! Hair feels awful , I get so hot at night and usually wash it everyday . Today Ihave to start my subcutaneous injections which can make  you have bone ache and diarrhoea ( it also says hair loss on common symptoms!) so really looking forward ro that ,not!

Not much energy today either after first mad burst at 8.30 am. I went up my long but narrow garden and opened the greenhouse and potted up a few seedlings ready for my organic veg plot.Now searching Youtube for instructions for injections as I don't want to have to wait for district nurse to come everyday.

Hope everyone has a good Bank Holiday ,selfishly I hope it's not too sunny as I can't sit out in the garden anyway. OH bought an awning to cover our deck so will have to wait for that to be installed. 

Best wishes to you all xxJan

Re: Starting chemo May 2014

So woke up this morning, it's my Hubby's 70th birthday and the girls managed to stay in bed till 6.15! Not feeling too sick today and the best bit is no headache! 

Going to try and get an appointment to get some seroma drained before the bank holiday as I seem to be filling up a bit again...

 

Have a good day everyone 🙂 

 

Cycle 1/8  Day 4/21

Re: Starting chemo May 2014

Hi Fowey, from what I understand, the BRCA gene is more prevalent in some races. I am descended from Ashkenazi Jews, so was told very early on I was likely to have it. How it starts off is from a mutation which then gets passed down... I'm so glad you don't have the gene/x

Re: Starting chemo May 2014

Hi Sheryl, I'd love to join your fb group my name is Jan Robinson, I'm not a Lady but I am a lady , my screen name goes back to Tombraider pc games! 

Re: Starting chemo May 2014

Hi Logicienne,

 

Sorry to hear the gene runs through your family.I don't have the gene, but was just asking the consultant about my daughters as until I was diagnosed I didn't know too much about how breast cancer worked.i.e can an individual in a family get it or are others affected>?

 I mean, it must start somewhere at some stage with one member in the family but my consultant didnt seem to want to discuss it any further once he confirmed I dont have the marker'

Good luck with everything xx Ruth xx

 

Re: Starting chemo May 2014

Hi gmc, your cheery disposition always brings a smile to my face, I think we need the Dunkirk spirit to get through this thing 🙂

Glad that you are also burping and wee is red too, I feel better now and yes I am using separate toilet to my kids and hubby.

I did check over phone re the period thing and they said our bodies are so messed up with all this treatment that with some the periods stop and others it can start them off again and were not overly concerned after asking me a few questions so that made me feel better 🙂 Glad you don't feel too bad either xx Ruth xx

Re: Starting chemo May 2014

Hi ladies hope you all slept well,

 

Had my first (of 3) FEC sessions yesterday morning. Supposed to start at 10.30 but it was delayed to 11.30. Not as bad as I thought it was going to be and everyone was very nice. All done by 2pm. Felt a bit sick and headachey around 5pm and took a "back up" sickness tablet, but realised later I hadn't eaten since 12.30 so quickly had something and felt better within 10 minutes. Managed to sleep quite well as the portcath area was not as sore. Will try to eat at regular intervals today and have decided to keep a daily diary to include what I've eaten and levels of fatigue to refer to on the next cycle.

 

To explain my history - I am 49 and found a lump early Feb 2014. I had a lumpectomy in my right breast to remove 3.9cm (plus DCIS to 4.8mm) along with axillary node clearance on the 31st March. They removed 19 nodes of which 7 were clear so no further removal needed. My subsequent CT scan came up clear. I still have a burning sensation in my arm (like you logicienne) and am numb under the armpit, but was distracted from the soreness there when I had the portcath fitted. My sister had BC 24 years ago when she was 30 and the doctor has suggested getting tested for the gene at some point as I have two daughters (Annabel 10, and Freya 6), although he says it is likely if I am posiitve for the gene it will just mean them getting screened when aged 30. My daughters took it very well when we told them and we tried to be open and honest, although they deal with the information quite differently as Annabel hasn't mentioned it since and Freya has daily questions.

 

I will be having upto 12 sessions of Taxol after the FEC, followed by radiotherapy and Tamoxifen. We had booked to go to Florida in August but have postponed it to October after the chemo and before the Radiotherapy, so something to look forward to. 

 

I am so pleased to have joined this forum with the support and help we will give each other through these tough times. I will be joining the FB group as suggested by Sodastream - thank you.

 

Best wishes, Lorraine x

 

 

 

 

Re: Starting chemo May 2014

Having read everyone's posts since I last posted re my results yesterday I have to say I am feeling quite lucky and full of admiration for those of you who are younger and coping with family life.  I am fortunate that apart from running a holiday lets business here I don't have commitments on  a daily basis. no school runs or commutes with all those nasty bugs.  I can quite literally stay in and put up the barriers and life would go on as normal. 

 

I've given myself a good talking to and realising that I have to cherish all the positives I can. Starting with.............Had my hair cut this morning and am told really short quite suits me. 🙂  I've only waited 66 yrs to find that out. lol

Re: Starting chemo May 2014

Hi all
Just to let you know I've set up a Facebook group. If you want to join then if you private message me I'll let you know the details. The benefit of joining the group is it is private so only those in the group can see the posts but we can also post pictures which may help us on our journeys (we can compare hair pictures).
Sheryl x

Re: Starting chemo May 2014

Fowey, I also have the BRCA gene. I've known for a while I may have had it as I've been under the nightingale centre since I was 14. My aunt had a double mastectomy at 28 and died at 32, subsequently my dad was tested and he had the gene which automatically meant I was 50/50 for having it or not (as is my brother). I turned down having the test initially as it would have affected me trying to get a mortgage, and I figured that as I was getting early screening with mammograms (started when I was 20, instead of 50), I was in good hands. What I hadn't counted on was missing mammograms due to pregnancy and breastfeeding, they wouldn't do them until 6 months after i finished breastfeeding, so instead of having 2 a year, I've had 2 in the last 3 years. I only decided to have the test recently, when I was diagnosed as I figured I have my house now, so the old excuse didn't wash anymore and I needed to know to forewarn the 3 girls. Results came back positive, so that means that the girls are all 50/50 now as well... Think that's the hardest, knowing all 3 may have it/none of them/ 1out of 3/ or 2/3. I'm trying to persuade my little brother to have the test done now, as he has 2 kids (1 girl, 1 boy).
If you have any queries re the gene I'll try and help if I can 😉

I will also need my other breast removed after my Chemo and radio and then my ovaries out, to reduce risk of ovarian cancer. I'm just taking 1 step at a time as I think this will be a long haul! 

Re: Starting chemo May 2014

Good morning Ladies,

Had a few good hours of sleep last night but kept waking up wondering how I felt!! Anti-nausea pills seem to be working but feel like I've got a hangover so will  do as the Dr ordered and rest up. I'm lucky that I don't have little ones to cope with at home as mine have long since fled the nest. I take my hat off to all of you coping with all these stresses and young families.

When I asked one of the chemo nurses yesterday about taking paracetamol he said if you take your temperature first and it's normal then it's ok to take a paracetamol - but NEVER it you have a temp as it masks any problems - as Ruth says. I think I'd phone first just to check.

Logicienne - glad your feeling a little better today and your headache improves.

Ruth - I'm burping too - not in a very ladylike fashion! Hope you get some answers re menopausal symptons. I was pushed into the menopause first tome found with BC  when put on Tamoxifen but I imagine you're not on any hormonal meds yet! Maybe you are peri-menopausal and you can get a BT to confirm that.

Barbersdrove -when does the bad news end. This has been a rubbish start to the new year hasn't it. You sound really positive and it can't be easy.

 

Peeing pink and using separate loos as nurse told me that as I'm peeing out the poison to take care and wipe toilet with an anti-bac wipe each time of use so as not to pass anything on.

 

Have a good day everyone,

 

Gill x

 

Re: Starting chemo May 2014

Fowey, Thanks for the good wishes, hope your treatment is relatively painlessly too! I didn't opt for the cold cap, I had waist length hair and decided to get it cut short. I donated it to a children's charity (the little princess trust), who make wigs out of proper hair for kids with cancer.  Trying to raise the £2000 needed to convey my hair into a wig for a young person. The fundraising is giving me something to focus on as well, I'm over half way now!

Re: Starting chemo May 2014

Hi barbersdrove,

 

So sorry to hear of all your results, but have faith in the experts which I am sure you do have and try to remain positive.I know how you feel about your daughters as I have two aged 22 and 19 and the first thing I asked was will they be ok.But I must admit I dont really understand this marker thing with the faulty gene and my consultant was quite brusk with me so I presume it wasnt an issue in my results?

Good lUck with everything there all great ladies here with loads of good advice. xx Ruth xx

Re: Starting chemo May 2014

Hello Logicienne,

 

Sorry to hear of your diagnosis. I was diagnosed with stage2a invasice ductal cancer following a standard mammogram. I had 11 lymph nodes removed when I had my lumpectomy and 10 were affected. I have since had a ct scan and bone scan and all clear.

Now started chemo for 6 months then radio followed by a hormone tablet. One month on I also have unconfortable sensations where I had the lmupectomy but my armpit where th enodes were removed is just numb now.

I havent used paracetamol as my chemo nurse did say taking it can mask symptoms you could need to be aware of and just to ring them if I wanted advice.

I have several pals who visit who work in schools as I used to.I have been told that just to tell people not to visit if they or close family are unwell, but otherwise go out and about as normal.

Good Luck with everything xx Ruth xx

Re: Starting chemo May 2014

GMC - Yesterday I felt a but light headed, not quite dizzy, but not fully right (hard to explain). This morning I've woken up feeling a lot better although very tired (could be more to do with my 5 yr old having a nightmare at 3am though!). Decidedly not feeling as sick this morning and have managed to eat more breakfast than yesterday 🙂 

Cycle 1/8 Day 3/21

Re: Starting chemo May 2014

Gill,

 

Glad your first session went well.I am now on day 3 and other than burping alot, nothing else has transpired in the nausea area. I felt very light headed after taking the cold cap off, but no more scatty than usal otherwise 🙂

Bizarrely not having had a period since June2013, I have now begun a period after this first chemo session, not too sure if normal or not so will ring chemo nurses and ask. I have had no other menopausal symptoms and no other family female member to compare menopause age to as mum has alhzeimers and wouldnt remember now 😞

I cant say I have been anymore tired than usual but I have been taking things easy at home, so its difficult to say. I did get a face flush when I administered the injection the following day after 1st chemo. xx Ruth xx

Re: Starting chemo May 2014

 Hi, I thought I'd introduce myself... My name is Kate & I am a mum of 3, Abigail (5), Danielle (2) and Jenni (10 months).

I was diagnosed on 6th Feb after Jenni got really fussy breastfeeding. I was given a fortnight to stop breastfeeding completely and I had a mastectomy on 28 Feb with sentinal lymph node clearance. 

They found cancer in the lymph nodes so had to go back in for surgery on 24th Mar for a full axillary lymph node clearance. I've been put on anatrypaline to help with the nerve damage as they had to "sacrifice some nerves in order to get at all the lymph nodes", I feel like I have a constant burning sensation in my arm, has any one else got this?

They've subsequently found the cancer had spread into the axillary lymph nodes, so I'm down for radiotherapy after my Chemo has finished and endocrine therapy after the radiotherapy.

On 9th April I had a cardiac scan and on 11th April I then had a CT scan, MRI scan and a whole body bone scan.

29th April I had my Hickman line inserted and my first dose of Chemo, I'm having 4 lots of Epirubicin & Cyclophosphamide, followed by 4 cycles of Docetaxel.

After the 1st Chemo, yesterday i woke with a banging headache, I was told not to take paracetamol as it can mask temp rises, but notice a few of you have mentioned taking paracetamol... Does it depend what Chemo you're on?

Trying to drink lots of water, feel sick, but haven't been yet!

Has anyone any advice with kids at nursery and school re the inevitable snotty noses and coughs? Must admit I'm a bit worried about it!

Sorry for the long post 😉 

Re: Starting chemo May 2014

Hi Ladies,

 

Had my first chemo this afternoon. Everyone there was really nice and explained everything. Tonight my head is feeling quite "spaced out". On anti sickness pills for a few days so praying they work as well as yours so far, Ruth. This all seems like a waiting game to see what happens next.  Did anyone else feel a bit strange in the head after ? (Not something I would usually admit to! )

 

Sweet Dreams all

 

Gill

Re: Starting chemo May 2014

Just got back from seeing the oncologist prior to the chemo and another bit of bad news dripped into the conversation!  It seems she is quite convinced that I have the faulty gene and wants me now to talk to my 3 giirls about getting a mammogram now even though they are all below the normal age.  43, 41 and 37.  If I do the other breast will definitely be coming off too and probably the one ovary I have left after the hysterectomy..  I now have to find out as much as I can about my sisters pathology reports, not easy when one was over 20 yrs ago and the other 10 yrs and she is no longer here.  However, on the bright side I feel really good at the moment and just want to get it started.  The sooner it will be over then!

 

Oh yes, the other bit of news that I had not been told before is that mine was a triple negative.  Apparently more aggressiver and faster growing than the norm,  Hence why it grew to 37m in the short time between a call back from my routine mammogram when after a second mammogram and an ultrasound they found a cyst in the same breast and drained it and now. Just 13 months.  I've been readin up on it and don't like what I've found but so glad i agreed to the chemo.