Hi this is my 6th day in on chemo fec-t , had good night eat tea ect managed to stay awake …
Gave my self my Neupogen injection ( helps with low white cells thet said )
Went to bed and have woke this morning feeling as sick as a dog again ( just as I thought I was starting to feel alittle better )Ive
also had a good cry cause getting quite peed off now sorry !!!
My young children have been away to give me a break and there back tomorro not sure how ill manage like this !!
Also ache all over my back feels like ive been kicked by a horse …
Just read side effects on injections and thinking it may be those as i felt a little better before bed …
Any Ideas will call hospital today but wanted to ask you ladies as i know you will understand …
HI LISA…
GET COCODAMOL AND VOLTAROL FROM UR DOC…GET HIM 2 VISIT THE HOUSE.
U NEED 2 STAY ON TOP OF THE BONE PAIN…HAVE U GOT SOMEONE THERE 2 PICK UP A PRESCRIPTION FOR U?
RE UR SICKNESS - GET THEM 2 PRESCRIBE ANOTHER ANTI-EMETIC
PXXX
Thanks P
IM ment to be having bone scan today at hospital if up 2 goin ill pop in ward …
Hope hot bath will help really emotional …aswell …
Lisa
LISA…
JUST HANG IN THERE…OK
BIG HUGS
PAULINE XXX
Lisa,
Def hold in there chick. Im having the injections for the first 10 days after FEC, and I have to say, although after day 6 i start to feel better, its not till after the jabs have finished that i start to feel anywhere near normal. I kind of feel sea sick most of the time. This is my third cycle and its taken till now for me to realise its the jabs that are affecting me. You are very good doing them yourself, I am not ready for that yet, although i have the district nurses in every day as i have a leakage in my reconstructed boob that need dressing every day. Thats why im having the jabs. Mind you, they didnt work after the forst session, i still went neutropenic and had a 5 day stay in hosp and a blood transfusion. Its just fun fun fun all the way isnt it this bloody cancer malarky!!
Keep your chin up though, I hope you manage with your children back, mine are 9 and 11 so can fend for themselves abit, bless em, whata learning curve!
Love and wishes
Kerry
Hi Kerry
thank you so much starting to feel i was going mad , went into unit ( ward ) today and they kept me in and did obbs and bloods due to symptoms .
Bloods came back slightly high which they said was due to injections but was good 18. something they said ,
so said i could stop taking injections as feel so rough so hope by tea time tomorro when kids come back ill fell brighter .
Daughters 7 on Sat so ment to have little party for her friend ( Ohh the noise)
Would you belive before this never really suffered with sickness or headaches …now ive got them all …
You sound so positive kerry good on you hope I can be very soon …
Also had bone scan today and feel pos about that at mo so thats good i supose …
Nice to speak to you keep in touch hope your next cycle is the easiest …
How many you got left ???
Lisa 39 yrs xx
mom of son 12 and daughter 7
Hi Liza,
Like you I had a very bad experience with Neupogen. I have developed a very nasty cough on my day 12 after 1st FEC cycle and had to be checked by oncologist. Was given neupogen 3 doses (1dose /day) and antibiotics. My 1st injection hit me terribly. The pain was unbearable from the lower back down. Hubby called the ward in the middle of the night to ask for advice to ease my pain as he is so wrried and had never seen me in such a terrible state. Couldn’t get up of bed. Never felt so sick. Since I don’t have any strong pain reliever like cocodamol at home, I have taken 2tabs paracetamol and luckily it worked and I have managed to sleep for a few hrs. The pain after the 2nd dose ease up a bit and so with my 3rd dose. But then the experience is unforgettable. Have discussed it thouroughly with my oncoligits during my 2nd cycle last Tuesday and have insisted I will never take that injections again even it would mean it would boost my WBC. I told him that I am only 40 but felt like I have aged a lot because of the injetions. He was very symphatetic (bless him) said that since I am prone to infections, they need to give GCSF like neoupogen every after cycle but since I had a bad side effect on it, they have given me NEUPLASTA injection this time. It’s only 1 dose and to be administered 24hrs after chemo. It is also GCSF like Neupogen but it’s long acting one and rarely they said patients experience bone/muscle pain from the injection. This time they are right. From the time I had it yesterday, didn’t experience any pain anymore except for the usual headaches which is manageable. Hope you are feeling a little better now. I have 2 children as well 4 yrs old and 9yrs old so I know what your going through. Lots of love — giget
Hi again,
I hope you are feeling better now the injections hae stopped Lisa and Giget, you are lucky to have such an understanding Onc!
Here is my brief history, I was diagnosed with DCIS in Oct, which essentially was a precancerous lump, and a big one at that. I had a masectomy and immediate reconstruction in Dec. That shoudl have been it - job done. But, when the histology report came back our lives were blown apart. They had actually removed a grade 3 tumour the size of a hens egg. So hence the chemo as my lymph nodes showed sign of infection too. I was due to start chemo on Jan14th, but 5 days before, my new bood sprung a leak, a horrid gooey one at that. A week later, it sprung another one, and 11 weeks down the line i still have 2 cavities in my new boob. Hubby looked at them the other day (brave boy!) and said that he could slide his little finger into the larger one, not that he wanted too!! Its fat necrosis apparently. I had a DIEP reconstruction, where my tummy fat was used to rebuild me. Very clever stuff, but some of the fat has died, so its a matter of waiting for it to stop so its dressed every day. Chemo eventually started 4 weeks late, but im glad to be getting on with it, apparntly the wound will not heal whilst on chemo so just want it all done and dusted really.
I am positive Lisa, I have to be, I have a great family and friends and dont want to miss out!! Where are you by the way? Im in Rugby in the mIdlands - you anywhere near, we are similar age too, im 38.
Let us know how you are feeling today, and good luck forthe party. We have arranged to go out on Saturday night - a brave move, but its got to be done!!
Take care all
Kerry
Hi Giget just 24 hrs after stopping injections i can walk like a 39 yr old and not a 90 yrs old of the joy to straighten my back , still ache but not half as bad and sickness has reduced not sure if thats also because inj stopped ??, they would have to pin my down next time to take them …
Kerry yes I to was grade 3 and 15 out of 16 lymps pos was told 2 fridays ago that i would start chemo following friday ( last friday ) thats only time ive really cryed since all this ,as have easter hol booked next week in devon and as you know daugthers bday …I did ask if I COULD delay by 2 weeks to enjoy large group hol friends 4oth ( it woulod be my low immune week and because of size of site club ect not abvisable on first session .
And the onc just looked and didnt need to say a word so have not had chance for it all to sink in as been treated for last 6 months for breast abcess only to be told 4 weeks ago got bc …had right mast …
im from Dudley by way
Sorry kids home from wales with nan and grandad
12 year old wants his lap top back
speak soon Lisa
Ah ha, Lisa, the wrath of the Onc hey! Been there, done that.
Since first diagnosis, all the docs and nurse have just been encouraging and i cant say a bad word about anyone, they have all been so fantastic. All the way along I have been told, yeh, chemo will knock you about, but on your good days try and live a normal life a spossible, which i think i have done. Now, in the last few years ive raised about £2000 for Alzhiemers as we lost my dear nan to it. Ive done this by “running” half marathons. In fact i did the Great North Run last year 2 days after my biopsy and mammogram. The week i was diagnosed the entries to the Moonwalk were opened, so I applied and I got a place along with 2 friends. As it happens now, the Moonwalk is on my crap weekend, and also the weekend after i move from FEC to Taxatere, so i asked my Onc if we could delay Fec 4 as i had some plans. His reply??? “Well, if you want all those cancer cells to keep growing inside you!” How do you respond to that? He asked me why and i told him about the moonwalk (the half one at that) and apparently he had never heard anything so ridiculous!! So basically he told me i couldnt do it. I fully understand his reasoning, ie blisters, body strength etc, but it was the manner in which he told me. I felt like i was about 4. He never checked if i thought i was fit enough etc or if id done anything like it before. Anyway, I spoke with the moonwalk folks and much to the dismay of my walking buddies im doing it in a wheelchair!!! I think what annoys me, is i spoke to my breast surgeon when i was correctly diagnosed and knew about chemo, and he said it was probably the best thing i could do, asi would need to train, the fresh air and exercise would do me the world of good and give me a reason to get out whilst undergoing treatment. As the moonwalk should have been ona good weekend, and the weekend of our 15th wedding anniversary we splashed out and booked the Hyde park hilton, so even if I dont make it to the walk, I can spend the weekend in luxury eating room service and Hubby will get a well deserved break.
Well, its about bed time for me.
Bet its good to have the kids back!
Love
Kerry
Hi Kerry , like you Im a strong minded ladie so why is it after being told about our bc we are then talked to like children and for some strange reason dont really answer back !!! any way off my soap box lol.
Yes kids all tucked up great to get hugs …as you can see due to bc I no longer sleep at normal times …whats normal again ( heart burn tonight thats a new one … and stomache feels like a washing machine Oh well the joys of bc …
WOW just reading when you did the Great north run make my scare area pull owwch !!! By the sound of it I dont think youll be using the wheel chair much !!! do what you feel ,its your body at the end of the day we already have enough people telling us what to do !!!
When I was first diag my friend talked about the moon work how fab id love it … May be next time lol start trainin now I think …
How funny I work ( when Im back ) for Intercontinental Hotels for the London area and our 5 star hotle is in hyde park
So know where your staying its a great location …lucky you …
Try and get an hour
Taking Mackenzie and her 5 friends to brear factory and mc …Better wear a face mask or the buff I just had arrive ready for the hair loss no realy metioned that bit of it with you what stage are you at …
I tryed my first wig today not as bad as I thought …
Milk helping bed time Lisa xx
Ps from friend and onc ect the second part …taxatere is not ment to be as bad lets hope so …
Lisa
Hi Lisa,
Hope youve built some good bears today and your daughter had a great time.
hair loss for me started at around day 15 after first fec tha day before my birthday!!. i could just run my hand through my hair and about 50 hairs would come out. The kids thought it was great! they ended up sitting either side of me and pulling clumps out, i look like a chimp being groomed. It really hurt though - not the hair being pulled out, but just sitting on my head. I think oce it started dying it just sat lifeless on my head and when i tried to move it, it really hurt my scalp. So, the day after my birthday, my husband, Shaun clippered it off for me. An experience far more traumatic to him than to me. To be honest, I am not a girlie girl and am not having a wig, I really dont think i could be bothered with one. I wear hats a lot anyway. I ordered a few bandanas etc for a website called scarfhut at a very reasonable price, but dont wear them in the house, i find they keep in far too much heat and adter going neutropenic during round one, I will do anything to keep my temp down!! It was hard for shaun at first, i suppose he sees me more than i do and its a constant reminder to what we are going through.
I am looking forward to LOndon, and next week my gorgeous nephew is one so we have a weekend in Lancaster in a nice hotel, the only donside being, i cant use the swimmong pool and sauna etc with the kids and shaun due to my wound, also we cant go on fri till the nurse has been an have to get back on sun intime to be the nurses last visit of the day as they dont want me going more than one day without the dressing being changed. Bloody nuisance.
I can sympathise with your sleeping, the last three nights, i have been terrible, been absolutely knackered in the evening, in bed just after 10 but then waking every hour. I even got to watch the repeat of countdown at 4 one morning whey hey! I am really knackered now and very achey so hoping for a good night tonight. Im not good without sleep. Seems like we are running parallel lives at the moment. I had FEC 3 on April 1st, have one more then onto Taxatere, i have read that alot of ladies on here find it easier than FEC so heres hoping. I do feel as though I have got off quite lightly with FEC with tirednes being the biggest problem. most of the time i just have a “cant be arsed” attitude, but luckily with the kids i have to drag myself up, but they are great and understand my limits. Luckily we had some critical illness cover so ive been able to stop work (just gone self employed as a bookkeeper) and can concentrate on myself and the family, because God knows, if BC has taught me anything, its just how precious these three people i share my life with are.
Well, im getting a bit deep now, and the dog has just farted again, so maybe its time to get off to bed. Who knows i may meet you here in the wee hours.
I hope the heartburn has improved, ive had it the last 2 days but it seems to be ok today.
Take care,
Kerry
Crikey, just seen the size of the last post - that should sort your imsomnia if nothing else!!! Sorry.
Hi Kerry ,
Look at me been itchin to get on here but been to busy ( the joys of being mom again !!!
I think today has been the first time ive sat with the children and done and said things with out having the thought of my bc in the back of my mine , its so nice feeling normal again even if it only for short bursts.
We have told children things but not gone into great depths so its nice with children around because it makes me become mom again … …
Its nice that them being away while I was quite poorly there now none the wiser …
Had lots of friends round who are going to be in devon next week with gary and the children telling me what they have planed and where there going and how much fuss the children will be given …
It really makes me happy as the one thing i didnt want to happen with the bc was for it to affect the children so I think ive done really well …
Sorry im getting a bit deep now …
Made a new friend who leaves in my street who is 12 months down journey to us she has been popping round givig advise and seeing how ive been doing …bless
Any way she walked past our house today thick full head of hair back , going on a five mile walk with a friend its something she had never done before but since all this has become a bit of a fan …
so that was my insperation today …
Thanks daugthers birthday was great got quite emotional when put up banners and brought presies down when she had gone to bed , think it hit me how young she is and how some one our age shouldnt really have to think about all this …sorry there I go again …
Getting quite frustrated with my self hope its medication thats making me down as its so unlike me…
Got week being looked after by mom as gaz and children away and im putting a sign up saying highly contagious !!!keep out lol
Must make it up to mom think its due to being tired but been quite snappy with her …she is as good as gold aswell …
must go lots of packing to do for them tomorro
though about putting daugthers outfits into seperate bags save them fighting each morning about what she is going to wear …
7 going on 17 !!!she is so like me and knows what buttons to press when it comes to her dad … I think it will do them good as she seems to do lots with me so they have some quality time together…
And my son is so good that you wouldnt even know he was there unless he wants feeding …
Got to go thats bigger than yours …
Enjoy the Easter bank holiday with your family hope the sun shines
Lisa X
Sorry never been able to spell and got to much to say to keep doing spell check
Lisa.
hi lisa,
glad you have had a good time withthe kids. Im envious of them going to Devon - which part?? We thought very hard about moving there about 18 months ago, it was only the kids that talked us out of it really, plus the cut in wages that shaun would have had to take. Goo d job now that we didnt.
I had quite a funny weekend. Sat morning i was very emotional and cried whenever anyone looked at me, so took myself of to bed for a few hours. we went out sat night to soe friends in milton keynes for a meal which was lovely, but very tiring. My God daughter is 6 and they warned her before we got there about my lack of hair and that i had been poorly. Normally she isa all over me aand im the best thing since sliced bread, but she was very reluctant to even talk to me. It was a shock really as my are older theier friends havent really treated me any differently. im sur eshe sill come round though. Hows your hair going??? (that question probably wasnt the best phrased!)
Can i pick your brains far a mo and take you back to work??? … This moonwalk again, I was going to hire a wheelchair from here and take it to london on the train, but a friend has suggested phoning the hilton and aking them if they can help source one locally - would they do that?? im not normally a forward asking person, but it would make life so much easier for us, would be good if they could.
We went, out again last bight for a friends birthday, an indian buffet. I cant ever remember eating that much in one go before, but it was bloody lovely!!
Lucky you having the lady over the road to talk to, one of Lucys teachers wrote me as she has been through it all, but she is quite a bit older and id feel funny speaking to someone i dont even know, she wanted to come round the house! I have lots of friends that pop in all the time, and to be honest, its great to talk about other things!!
Got to go and make the beds now, the sun was out o thought it would be good to get them all washed, wish i had not now!!
Love
Kerry
Hi Lisa,
hope you are ok ???
Kerry
Hi Kerry
Sorry will post more 2morrow just to let you know with in one day changed my mine and decided to go to devon with family and friends so glad i did better than any medicine and weather was great decking of van over looked the sea . so woke each morning and sat out looking at see …
yes defo phone the hilton about wheelchair ask to speak to the consearge ( that can usually get what ever you ask for ) hope you dont mind me saying but Ive decided to use this as a pos thing and if that means telling them at hotel what your going through at mo and explaining why you need the chair …Why not use this to your advantage …that way it makes me feel more in control and not the c …
loads to tell about hol but will post 2 morro
site we were on is called devon cliffs large haven site by exmouth
How funny I said to Gaz I would love to move out here …weve been 4 times now and we always have great weather…
Hair coming out in handfulls now and scalp reall sore , my sons really upset about it at mo…
must go loads to do
just let you know im ok
post 2morro lisa x
Hi
I had the same problem with this drug and declined it after 2 times and felt heaps better.
Instead of having a slow acting injection the day after chemo I had the fasting acting one (Neulasta or Granicite I think) 5 days before the next infusion and felt no bad effects at all.
Ask about it, it’s like anti-sickness, there’s always another they can try for you.
D
Hi D got second chemo 2 morro so wrote down what you have said and taking it with me thanks will let you know how I get on …