Tact2 trial

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61

Hi Shirl

What a fantastic bunch of workmates. It makes such a difference when they are so supportive, doesn’t it?

And hope the tablets are still working their magic. What are they called?

Your OH sounds great. Keep laughing.

I collected my 3rd lot of xeloda yesterday and they’ve referred me for my rads planning session. Appointment should be about a month. I can actually see a bright light at the end of the tunnel now. AND my hair is growing (more quickly on the legs of course).

Had a Halloween party for 7 of my grandchildren last night. It was fun but very noisy! Wacked today.

Hope the rest of you ladies are keeping well.

Keep smiling

Mal x

62

Hi Mal
feeling great today, still no sickness, the tabs are Haloperidol and Lorazepam, the ist one did make me a bit sleepy for about 4 hrs, but took the other one late last night and i was sooooooooooooo awake i came back down at 2.30 am, and at 4am i was cleaning the bathroom, i finally fell asleep on the sofa at 5.30 till 7.30, but i didnt feel tired today, and i went shopping but only to costco.

Work actually raise £1500 yesterday, they are just so brill.

well i will take another Lorazopam in half an hr and see if it makes me sleep tonight, if not i might use my new steam mop i bought today and clean the lounge wooden floor, the excitement of that should send me to slep,

You sound like you had great fun last night, we only had 16 children call here, and Emma had made up 35 treat bags, thats about how many we usually get. i have told her she can take the rest into school next week.

Emma wrote out her xmas list today, Lap top, girls aloud book, cheryl cole book, sims game,
then she wrote me alist, Necklace, perfume, chocolates, and new hair,

enjoy Sunday and i hope the rads planning goes well
Shirl

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Hi Shirl

Cleaning the bathroom at 4 am? Take it easy girl!!! And hide the steam mop!!

Really glad the tablets are working and you are so much better this time round. Emma’s Xmas list sounds very expensive. How old is she? It’s a lot cheaper when they’re just little.

Take care

Mal x

64

Hi
Emma is 13 going on 25, but she is such a darling, we have finally finished her bedroom it looks great i want to move in,
OH shaved my head tonight and it feels so less painfull, Em gave me a hug and said your still gorgeous without your hair Mum, i nearly cried, But my wig feels so much tighter and hot,
Oh also made me a fantastic smoothie last night, vanilla ice cream milk and baileys, I slept so well last night im thinking of trying another one tonight, but not sure if i should have alcholol,
Going with my sis for her check up tomorrow, 8 years on but she has bad limphodema,
work collected £1500 on friday for breast cancer,
have a good week all, and i wish you all feel as good as me,
Shirl

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Hi everyone
Shirl glad you are feeling better with the extra tablets. Agree with Mal though on cleaning the bathroom tho…
I have just started giving my house a good clean but its one room over a weekend. OH and son do their best but since first op in May not much been done in places taht arn’t easy… Still got two rooms done over the last two weekends. hope to be done by Xmas when everyone is home.

Mal lucky you on you penultimate Xeloda bet it feels great. Only two more lots of tablrts this cycle and I’m done. Then only three cycles to go .
You tell us to take it easy and then have a party for 7 grand kids… pot and ketlle…

Feeling much better now and as you say Mal more energy. At work most days for 4/5 hours
Take care all

Liz

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Hi All

Liz - Yes - loads more energy on xeloda. Think you’re back to normal and then do too much! Have started decorating this past week after the tins of paint sitting looking at me for weeks. Lounge done and hallway half-done.

I’m counting down the days and marking them off on the calendar. Finish xeloda on Dec 5th - yippee! Next time I go on 21 Nov the onc will also give me the arimidex tablets which I will be on for 5 years. Are you going to be on hormone therapy?

Shirl - hope you’re still full of beans. My wig has got more comfortable as time has gone on, it is now worn in just as my hair is growing. Take it easy.

Mal x

67

Hi
wig is good, i went with my sis to her cancer unit in Chester today and they even gave me a nice freebie bag of goodies, deoderant, eyebrow shapers, cranberry juice, simple face cream, it was a talk on limphodema and very informative.
Mal - glad your managing with the decorating but as you kept telling me dont do to much, I went to bed at 1am last night and was back up at 2.30 just not tired, the perk of this was when OH got up for work at 6am his packed lunch was already done for him, he said he much prefers his lunch when i do it,

The girls from work have asked me out for lunch on Thursday, a local pub by work has started a carvery for £3.50, some of them are going tonight to try it out,

Lizzie dont you overdo it either, the cleaning will wait , oops did i realy say that,

take care
Shirl

68

Posted on behalf of new user Linda
Lucy

Hi everyone, I have just joined the forum. I have just signed on to TACT2 and been given arm4. I have my first Epi session tomorrow morning and the district nurse coming around on Friday to give me the GCSF injection. I have been looking through the discussions and it is all very reassuring. Thank you for the honesty on here, I like to have the facts and know all the possibilities before I start. I look forward to chatting with you all.

Linda

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Hi Girls

Hey Shirl hope you have a brilliant meal tonight and hope you’re taking it easy.

Liz - hope you’re tolerating xeloda OK. Like you I’m managing 4/5 hours in work. Go in early (7.30/7.45) and finish at lunchtime. Feel as though I could work longer but am not pushing it, I’ve told them we can review it after Xmas when I see how I get on with the rads. They’re very good and I feel lucky that they are.

Linda - welcome. Arm4 goes in a flash. It doesn’t feel like it when you’re first starting. It seems like a long road. Epi hits most people the hardest and it’s a question of doing what your body is telling you (not like Shirl on here who overdoes it!). Having said that it won’t be as bad as your imagination would have you believe. You’ll feel better when the 1st is under your belt. I put all the dates on the calendar and cross them off one-by-one. Hope tomorrow goes OK. Come back and let us know how you’re feeling. We’ve all been there and know how you’re feeling. Once you get epi out of the way the xeloda tablets are a breeze by comparison.

Take care

Mal x

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Hey cheeky Mal,
I dont overdo it, honest, im lucky i feel really well on this treatment, no sickness no sore mouth no nothing, but i get bored and i cant just sit around watching telly, i try to go out every other day, then rest at home for a day, I am now thinking of writing my xmas cards next week, this might help pass some time, finally received my prothesis today, 12 weeks after surgery,

welcome Linda i agree with Mal and arm 4 does go quickly, the worse part for me has been the sore scalp, i now lay a silk scarf over my pillow at night and it seems to be helping, I just wish i could sleep at night

stay relaxed and take it easy
Shirl

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Thanks Mal and Shirl for the welcome and words of advice. The first epi was posptoned, just over night. The chemo suite was busy and I was sent home. Returned the next morning (yesterday) and all went well. So far I have been fine apart from a few waves of nausea last night. The district nurse came this morning and gave me the GCSF injection, I am a little achy in the back but otherwise fine. I am so aware of my body at the moment, I feel I am constantly looking for changes. I expected to feel awful today but I don’t. I know it may all still get me soon.

Shirl is your scalp sore because your hair is coming out or is this something that goes on afterward?

Linda

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Hi Shirl - you’re so lucky to be feeling so well. I think I had all the side effects going at different times on epi but the worst for me was the mouth problems and the loss of taste. Everything tasted so awful that I actually lost weight (and still haven’t put it back on). No problems on xeloda though thank goodness.

I wrote my Xmas cards and wrapped the presents last week. Still more pressies to buy though. Not quite finished yet.

Do you feel better now you’ve got your prothesis?

Went to the local shop today and the girl on the till said ‘Oh I love the streaks in your hair. Where did you get them done?’ She was totally shocked when I said it was a wig. I didn’t say why I was wearing a wig. It made me feel really good.

Keep smiling and have a good week-end ladies.Hope all went well Linda.

Cheeky Mal x

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Hi Linda

When I was typing the post above yours was not on here. (My mother phoned in the middle so it was a long time before I actually posted it)

Glad it went OK. The injections do make some people ache a bit although I never had a problem. And the sore scalp is when you’re losing your hair.

Know what you mean about being very aware of your body and every little ache and twinge. It’s natural.It does wear off a bit. I’m not as bad as when I first started epi. I seem to have things more in proportion now and don’t worry quite as much.

That’s the first to cross off the calendar and after the next you will be halfway thro’ epi.

Mal x

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Hi Shirl, Liz, Junieliz and Mal …I’m back and SO SORRY NOT to have been on for such a long time. I bet you wondered if I had left the county. I hibernated. Was so grumpy with everyone. 3rd Epi floored me and I even threw the phone across the lounge at one point as was sick of the phone calls asking me how I was. I just wanted to get some sleep and the phone seemed to be forever ringing. I’m over that now. 4th Epi wasn’t as bad just the actual administration of it. Veins and blood flow just weren’t playing ball and had hard time and ending up in tears - not done that before. It’s 2:30am - still having probs sleeping but will post again tomorrow and catch up with you all again. Hugs to all. You have all been on my mind and I felt really guilty not been on forum but then again trying to get this portable pc off my 12 yr old Jess, has been pretty difficult. Everytime I thought I’ll check onthe forum,Jess has it and is curled up in her room with it.

Big hugs to all and a great big hello to Linda. You’ll get loads of help andadvice on here. Mal seems to be the oracle and is so consistent with posting on so many threads, just want to meet her and ask how does she get the time!!

Fiona

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Hi Fiona, nice to hear from you again. I have finished epi and am now on 3rd CMF and had this yesterday and must say I do find this one easier. I go back again on Monday for day 8, then next one is 8 December so a good break. We all seem to have different effects but we will get there, my hair is now growing back slowly but is a positive sign it is coming back, but on saying that the eyebrows disappeared this week but well we have to get on with it it is part and parcel of our treatment. I had a picc line put in a month ago and had a few problems at first but OK now, a lot easier when I go for chemo, also have bloods taken from here so OK. I had a blood transfusion 3 weeks ago but was not as scary as sounds was looked after throughout. Hope your sleeping pattern comes back it is awful when you cannot sleep. I get up early and am shattered by 10pm I don’t sleep during the day and find this helps me sleep at night. I hope you will soon be feeling yourself again take care hope to hear from you soon love junieliz

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Hi everyone
Had cold and been laid up fpr 4 days but ok again and back at work. Got 2nd load of tablets today. Can’t beleive I’ half way thrugh 2nd half of treatment.
I’m one of the lucky ones no rads and no hormone tablets or herceptin. (Triple neg) that’s the only reason have had to have chemo.
Was at dentist yesterday as filling fell out 3 weeks ago and he wanted to check plug in tooth was ok. Wont do anything else until treatment finished. When mentioned had toothache said it would be the chemo affecting teeth and he will x-ray then all in Jan to check if any damage been done…
You are a show off Mal… Crads and presentsents done, decorating you are puting us all to shame

Take care all

Liz

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Hi all

Liz - show-off huh! Made a xmas cake too! Know what you mean about the time flying, I go for my last lot next week. Strange isn’t it? When you are waiting for the first chemo you can’t imagine the end but now…

I’ve got my appointment thro’ for the rads planning session in 2 weeks and I’m planning big charity event/party in March. I promised everyone who has been so good and has helped me over the last few months that I would have a knees up when it was all over. The idea has really taken on a life of its own. Two teachers at school are in bands, one a folk group and the other a pop band (Abba/Blondie etc) and they’re both playing for nothing. So I’ve hired a room in a big hotel, buffet etc and are going to ask for donations to cancer research. Should be good. (I love planning things)

Glad the rest of you are all feeling good.

Take care

Mal x

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Hi Mal - you really are super woman! I think I gave up writing xmas cards 3 yrs ago as just never seemed to get the time to sit down and write them - sent virtual cards and an email and said I was saving trees!
I have purchased a few as, as I am at home, I should have time to write them…However, have started to soak fruit for xmas cake - just started it 3 days ago and not got any further!

However, yesterday saw me in garden for 2-3 hours racking and clearing leaves dumped from the 4 oak trees/1 beech hedge/several hawthorn trees that all my lovely neighbours have that make up the boundary between the BIG houses and our little semi!. It was hard work but well worth it. I knew the bad weather was coming so took advantage of sunny weather. Cold but wrapped up warm, wore gloves and supplied myself with oodles of tea!

Tks Junieliz for your kind thoughts. Had 2 reasonable nights sleep - that’s why did garden as had ‘bags’ of energy!. I just have to get up at around 04:00 ish to go to loo and don’t really know if need loo as the ‘sensation’ is hardly there, and I toss and turn until I’m really awake and get up go and ten have real difficulty in getting back to sleep. Is this another side effect or is it just because i’m getting older and things go to ‘pot’ down there, or am just really unfit???

Oh Lizziemum -hope you are feeling better. Having cold is bad enough when you don’t have all this to cope with as well. (I ended up at Christies Hospital in first few weeks because of bad cold, but antibiotics helped)

Linda - one down, tick it off… The GCSF injections hit me quite hard; like flu and as if someone had whacked me across my back with a cricket bat. It lasted 24- 48 hours and then went but did feel pretty rotten and wasn’t too happy knowing I would have to have them but then again I didn’t pick up any infection all the while and the side effects became easier the more I had. I pre-empted feeling bruised by taking paracetamol, curled up on sofa with hot water bottle for 2 days and tried to get my family to ‘pander’ to my every whim!
Now I am on the tablets - no injections but then I don’t know if my wbc will dip and I get cold/infection etc. unchartered waters for me now. Just need to be more careful on days 7-10, so I believe.

I was thinking (hard at mo I know) but I don’t know how I would have ‘coped’ without having this forum to talk to you all. It REALLY does help especially when you are unsure of something. So thanks for being there to share.

Mal - I had thought of throwing party too but not on such a grand scale!! Where are you holding your ‘bash’ - somewhere in Edgerley?

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Hi all
sorry i have not been on all week, i ended up being admitted on Monday night with temp 38.6, i had developed a nasty cyst on my lovely lady garden, i couldn’t sit down without it hurting, but they gave me anti-biotics then let me home on tue night, thankfully it is now a lot better.
Alby, my head was sore due to hair falling out but it eased so much when OH shaved it all off for me, first one down for you only 3 more to go,

Mal . I feel so much better now i have my prothesis it looks more natural, so i feel more human, hey and dont forget my invite to your bash i will travel any distance for a good party,

Flo, glad to have you back, sorry you hit a bad patch but i fully understand you wanting to throw the phone across the room, i just want to shout at it sometimes then i feel guilty because my friends are only phoning because they care,
I envy you working in the garden, i have really neglected mine this year, my bay tree is about 15 foot tall now and really is need of a pruning, and i need to cut back all mu fuschias bushes,

I have spent today xmas shopping and i have wrapped them all up, what are you girls like making xmas cakes, i just go to marks n sparks and then put my own sugar crafted piece on top ( that a friend made for me) and it looks homemade, but i have bought all my cards and i plan to write them next week.

I had number three yesterday, bit hard to get the vein but no side effects again, i feel just as good as before it all started, but my Onc said she wants me to stay off work so who am i to argue, the DN came to today to give me my injection and i have had no trouble from these either, i feel just as good as i did before i started chemo, i hope im as good on the tablets.

Have a happy sunday all.
Shirl

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Hi all

Feeling much better this week. Lots of energy. well not as much as Mal…
My house actually looks and feels clean for the first time in 6 months… How awful saying thta. before BC I would have been mortified.
Lovely and sunny here today.
Take car all and have a good week

Liz