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Anyone starting chemo in July 2013? We are now the July Junkies!

chezzap
Member

Re: Anyone starting chemo in July? We are now the July Junkies!

thanks again Tamsin.. thats what Im hoping that if given weekly its a more manageable dose.  One of the June jewels is going to have it like that too and she is a couple of cycles ahead of me so will see how she is doing on it to gage an idea. 

Mahsa good to hear from you and fingers crossed your bloods are ok next week

 

Naz and Pollyanne are you ok girls not heard from you for a while??

 

Piggsy how are you??

Mahsa
Member

Re: Anyone starting chemo in July? We are now the July Junkies!

Tamsin, thanks for your words of encouragement.  I am seeing doctors on Wednesday and if blood test comes back ok, will have cycle 3 on Thursday.  just have to wait and see. 

 

Hope all lovely JJ's are well and having a good weekend.

 

Luv, 

Xxx

Mahsa
Member

Re: Anyone starting chemo in July? We are now the July Junkies!

Hi julie, I was wondering what happened to you! Looks like both of us can't cope with EC. You get chest infection, I get shingles just after cycle #2. I am feeling better now, but a bit light headed. Hope. You'll get better soon. Take care. X
benedictus
Member

Re: Anyone starting chemo in July? We are now the July Junkies!

Chezza: I can't advise on the weekly tax but could you get any ideas of se's from the unit?  I thought that if you were having any chemo on a more regular basis it was in reduced volume so se's would be reduced as well?  When I was on 3 weekly tax last time there was only one day I couldn't get out of bed cos I felt so awful and after that I made sure I took  all the meds at the correct time and I got through it, but having said that I wasn't having to be solely responsible for the school run.

 

Is Rafael's school a feeder for his nursery?  Any contacts there?  Or perhaps you need to go and explain the situation to the Headteacher.  As you say, it is just horrible that your little one's important first days at school are being overshadowed by this and it's so important that he really enjoys the experience despite what is going on at the moment.

 

Hope the nausea stays away and you have a peaceful weekend

 

And the same goes for all the other Junkies! xx

chezzap
Member

Re: Anyone starting chemo in July? We are now the July Junkies!

cheers Tamsin.  He is 4 so is just starting reception.  I had asked re morning and after school club but they had no spaces.  When Jose goes back to work he is starting at 8 so too early to take Rafael though he will be able to take Sergio.  I guess Im going to have to plan in advance it will help once I can predict what days am feeling rubbish might be able to ask neighbours to drop him off and pick up etc.

Am more worried when I change from EC to tax as thats gonna be weekly for 12 weeks and am scared going to feel awful the whole time without the sanity of week three.

Feel so peeved that BC has to overshadow my boys first day at school.  It is such a cruel disease.

thanks for all the support and advice as I know you have been there and got through it before.

benedictus
Member

Re: Anyone starting chemo in July? We are now the July Junkies!

Chezza.  I'm replying to your August post here because it's so darned busy on there!  I can understand how you feel about getting the boys out in the mornings once school starts.  What year is Rafael in?  Is he just starting or do you have a network of mums who might be able to help?  Could your OH do the school run on the mornings you are going to be feeling rubbish?  Do you have anyone else at all who could help?  It's difficult, I know, because us independent women hate asking for help and last time my little one was at the stage where he would have to be dragged off me kicking and screaming which was awful, but of course as soon as he disappeared from view he was fine!  Re: pick up.  Could Rafael go to after-school club for a couple of days a week then be picked up later by your OH?  Do you have a nursery you were going to put Sergio in? If so, I would explore whether you could do it on an ad-hoc basis?  And if you are having a rubbish day when he's not at nursery then TV/computers will have to do - again, mine watched more tele than I would have liked, but I knew that my main task was to cook tea for them and entertaining them did go by the way side.  They survived, though!!!

 

You spend a huge amount of time looking after/out for other people and you give fantastic and wise advice.  I want to make sure that you and your little ones and your OH are sorted before the relentlessness of school starts.

 

Right, I'll stop sounding like your mum now!!!  Hope you don't mind my wittering on.

 

Julie:  As chezza says, they will get your sorted.  They may change the meds, or reduce them slightly, or they may just carry one once you are well again.  But they will have your best interests at heart.  There was someone on the other forum in week 1 saying they can't do it and what are the advantages.  For me the advantages are having had 5 more years of life and 5 more years of watching my family grow which I might not have had if my treatment hadn't been successful in 2008.  Yes, it's a b****r that it's back, but everyone seems pretty optimistic and I'm going with that.  And the memories of what my family have done and achieved and the experiences we have had, some huge and some tiny, leave me in no doubt that this horrible invasive treatment is worth it.

 

Goodness, that was a bit heavy.  Sorry girls!

 

xx



 

chezzap
Member

Re: Anyone starting chemo in July? We are now the July Junkies!

Julie sorry to hear you have been having such a rough time with the chemo.  Do they give you the white blood cell booster jabs?

Im sure that they have more tircks up their sleeve and even if it means stopping or reducing the dose of the chemo they will have a plan for you

hope you start to feel better soon hunni xxx

 

juliemb
Member

Re: Anyone starting chemo in July? We are now the July Junkies!

Hi ladies, things havnt been too good for me, day 6 after 2nd ec, my temp was 35.6, hadn't really Eaten for a week , felt shocking, called hosp, went for bloods to be taken, whilst there I blacked out, had a fit and was admitted with oxygen and a saline drip, chest xray revealed severe chest infection, cat scan needed but was clear. Came home after 4 days, still on anti sickness tabs and 2 weeks of antibiotics, not sure what the plan is now regarding carrying on with chemo x x x x
chezzap
Member

Re: Anyone starting chemo in July? We are now the July Junkies!

hi piggsy.  Hope you feeling a bit more upbeat soon.

I have absolutely no energy today.  Dont feel ill just bit like in a stupour.  Think its the anti sickness meds as says can cause drowsiness.  Hoipefully energy will pick up tomorrow.

hope everyone else ok and manage to enjoy bank holiday

HelenL_BCC
Member

Re: Anyone starting chemo in July? We are now the July Junkies!

Hi piggsytrotter, it's a bit of a change, isn't it? It's one that really divides users, but this way of viewing did emerge as the most popular choice, especially for particularly long threads that can go back years, in some cases. I know we all have our own preferences and ways of viewing that we're used to, though! 

If having the last-post-first view is not to your liking, you can change it. That's the beauty of this new forum - a lot of it can be controlled by the individual user. If you go to the top of the page, you'll see 'Thread options'. You can then select '
Sort oldest to newest' to change the order.

 

I hope that helps Woman Happy

piggsytrotter
Member

Re: Anyone starting chemo in July? We are now the July Junkies!

Moderators, the latest post is now on Page 1 which is really counter-intuitive. Instinctively, Page 1 should contain the earliest posts, because it's the first page. And the last page should contain the latest posts. That's how the majority of forum work.

I find it hard to believe user testing didn't pick up on this as it's such a significant change, and it's really confusing. However, I imagine we're stuck with it now.

Edited to say that I like the fact the monthly threads are all grouped together.

piggsytrotter
Member

Re: Anyone starting chemo in July? We are now the July Junkies!

6 x FEC-T, FEC Cycle 2 - Day 8

Afternoon girls.

It’s really muggy and warm here by Stonehenge, which is not good for my energy levels. You should see the pile of ironing!

Took Daisy Maisy for walk early this morning as had to take step-Dad to hosp for physio app after his fall the other week. Long long story short, I’ve admitted defeat. Can’t keep trying to get him more mobile as haven’t got the energy to cajole, persuade, bully him into getting up and moving about. Can’t keep fighting my Ma either, who can’t/won’t see that we’re stuffed if he can’t walk about. So that, combined with the hair loss has made me very sad. But hey ho, nothing stays the same, and at least the hair will come back!

Orangecat, glad to see you’ve got a plan. I think it makes a difference because you can see where the end is. Enjoy your paddle, the ozone will do you the power of good. Oh I hope you’re not coming anywhere near the A303, because when I drove across it at midday the traffic was already solid both ways.

Chezzap, Zumba? Are you mad? Well, yes you certainly are. I think we all feel we’ve got more in reserve than we have, and then are surprised when we’re knackered.  I really enjoyed the Zumba classes I went to last year, but unfortunately my back didn’t. All that twisting. re hair, I have a covering of peach fuzz, but that’s it. Not brave enough to go to crowded places without scarf yet, but it’s so hot wearing one! Have found a baseball cap is quite useful, even though I hate them. Glad your SEs are manageable this time round.

Masha, sorry to hear the lump hasn’t changed but as Tamsin said there are so many different combinations these days, they can keep swapping them ad nauseum ha ha! Hope the shingles have calmed down and the other SEs are minimal

Benedictus, how lovely that your family are home. This energy level business is a right pain isn’t it? One day you feel fine but try not to do too much because of course we’re all trying to be sensible aren’t we, and the next you’re on your knees regardless.

Enjoy the Bank Holiday JJs, and good luck everyone who’s at the bar next week, may all your SEs be small ones. Xx

PS Can’t seem to write anything less than war and peace!

benedictus
Member

Re: Anyone starting chemo in July? We are now the July Junkies!

Thank you jo!

Jo_BCC
Member

Re: Anyone starting chemo in July? We are now the July Junkies!

Hi benedictus

 

I've passed your comments on to the team here.  Please do keep letting us know through the forum feedback area anything you wish to note about the new forums and we'll do our best to help - we're all learning!!

 

Kind regards,

Jo, Moderator

benedictus
Member

Re: Anyone starting chemo in July? We are now the July Junkies!

E-CMF Cycle 2 day 3.

 

So good to see lots of people on the thread!  

 

Really pleased you've got a plan Kat and so happy that you are beginning to feel stronger.  If you need GA for line I assume you're having a portacath?  Certainly the best one to have, so sorry for the hassle of a GA but in the long run I think it'll be for the best.  Yes, I know what you feel about the seaside - I think it's to do with living a long way from the sea. No nits here (touch wood) but I did my hair myself this morning and it really reminded me of those looooong evenings combing hair with the nit comb! Yes, everyone is back now.  I was fine while they were away, but as soon as I heard they were coming home a day early I just wanted them here. My littlest thought my party trick of pulling lumps of hair out was absolutely hilarious. I think he's sorry I can't do it any more.  Glad to entertain!  Felt so good yesterday I got a bit blase I think and am disappointed that I've felt so rubbish today.  Never mind, another day nearly over.

 

Mahsa: If you bookmark this thread you will be able to find us really quickly.  Sorry to hear slightly disappointing news re: the ultrasound, but as my BCN said "they've got a whole cupboard of drugs they can choose for you" so there will be something else if EC isn't working.  When's the appointment?

 

Oh!  I can only see Mahsa's message so can't remember what everyone else said.  Chezza:  don't do too much........

 

If the mods are reading, last unread post would be soooo useful, or a tag for "all new unread" like on the old site.  And if you're reading newest first but need to scroll back down to find the last unread if you go onto page 2 (which often happens with August!!!) you are then directed back up to the beginning of page 1 rather than the bottom i.e. it doesn't run in sequence.

 

Sorry if I've missed anyone.  Love to all xx

Mahsa
Member

Re: Anyone starting chemo in July? We are now the July Junkies!

Hello Lovelies,

 

This new forum is driving me crazy!!! Glad to have found you again Woman Happy

 

I think we are all having a bad hair day, I am avoiding mirrors too. Had an ultrasound today, and there are no changes too the lump yet. I have to wait to see doctors next week to see if they will carry on with EC treatment or change it.

 

Chezzap - I salute you for being so brave and doing zumba on day 3. I envy you...!

 

Love to all,

Mahsa xxxx

chezzap
Member

Re: Anyone starting chemo in July? We are now the July Junkies!

hi junkies Ec cycle 2 day 4

yes think will take some getting used to new forum

Kat glad you now have a plan of action and you are feeling better

Piggsy with you on the fatigue.  Even though physically well I went to zumba last night thinking was doing the right thing and was wiped out this morning. 

Tamsin at same stage as you re hair.  I just left mine at a number 3 - 4 and its still coming out loads.  Think gonna be completely bald. 

hope all others find us soon enough

orangecat
Member

Re: Anyone starting chemo in July? We are now the July Junkies!

Tamsin, just seen your post. Sorry you have been feeling weary, are your gang back yet??

There is an up side to this no hair thing and that is nits!! Oh yes they are visiting our house courtesy of summer school, haven't had the pleasure for years, had to go and buy a nit comb. Kat xx

orangecat
Member

Re: Anyone starting chemo in July? We are now the July Junkies!

Well I'm in a right pickle with this new site!! Can't seem to see everyone's posts whilst replying and took me ages to find you all. I hope they took chemo brain into account when they changed this!!

Hope all is well with everyone. Jealous of the butterflies Piggsy I only seem to have cabbage whites but have enjoyed watching the silly bees, they do make you feel good.

Well I have a plan. First to rest and recuperate, line next week can't have a PICC so going for something that requires a GA.(joy) Starting Herceptin on the 2nd and then Docetaxel to be added with the next dose. They promise to take it slowly and start on reduced dose, and watch me like a hawk. Every day I feel stronger, still have a nasty looking arm that I cannot straighten but I am told it will get back to normal but it may take months.

I hate mirrors too!! I am always shocked to see that person looking back at me cause I feel like me on the inside.

Trying to get away for a few days, need to see the sea and have a paddle, but I would try it on the bank holiday weekend!!??

Love to all Kat xx

 

benedictus
Member

Re: Anyone starting chemo in July? We are now the July Junkies!

Hi Piggsy.  Nice to be in contact again.  Glad about the lack of se's.  I had my second on Tuesday and felt rotten that night, but have managed ok since.  Bitten the bullet today with the hair and have shaved it down to a number 4 but to be honest it's still coming out so I'll do it again tomorrow. Know how you feel!!!!!!  Not sure how I'm going to feel the first time I go out. Perhaps I'll become a hermit for 6 months!  Sorry your spirits have been low.  Is it just the lack of hair or anything else?  Weariness really doesn't help, so that could be a contributing factor.  

 

Sending virtual hugs ((( )))

xx

piggsytrotter
Member

Re: Anyone starting chemo in July? We are now the July Junkies!

FEC-T x 6, 3 x FEC, 3 x T. Cycle 2, FEC. Day 7

Really can't work out where the end of this thread is, so apologies for not mentioning fellow Junkies individually. Once again I'm really lucky with minimal SEs. I am feeling a bit more weary this time, but everyone keeps saying it's cumulative so only to be expected I guess. The last couple of days I've spent faffing about in the garden and watching loads of butterflies of all types dancing about the place. It has been magical and a much needed boost to my spirits which have been a bit low. I'm struggling to deal with hair loss and hate catching a glimpse of myself in relective surfaces. But it has to be endured. So that's me. I do hope those who have been suffering are feeling better and those who are up at the bar this week get through it as easily as i have. xx

Pollyanne
Member

Re: Anyone starting chemo in July? We are now the July Junkies!

Good luck tomorrow chezz, will be thinking of you xx. Your right Piggys I think they realised it wasn't "me" to behave in that way , and the really odd thing was I went to sleep an absolute wreck and woke up as calm and serene as tho the day before didn't happen, I really do believe it was a steroid blip and will have a word to see if they can be stopped or reduced next time , much love to you all esp those of you up this week hope the site isn't down too long as its obvious its a big support for a lot of people , Im off now for a shower, been putting it off cos sure what remains of my hair is gonna end up in the plug hole but hey ho , sleep well all and good luck to the Maisie's who are starting this week too. Lynda xx
chezzap
Member

Re: Anyone starting chemo in July? We are now the July Junkies!

hurrah piggsy you are back I miss reading your posts if you dont post for a day or 2 they always cheer me up and motivate me!
thanks for remembering Im up tomorrow for number 2. Having different anti sickness this time and not taking steroids after so hoping not to have the steroid crash this time round
Shaved head to a number three and although blubbed like a baby doing it I feel a serene kind of acceptance now plus I can now wear my wig and hats.
piggsytrotter
Member

Re: Anyone starting chemo in July? We are now the July Junkies!

6 x FEC-T, FEC Cycle 2 - Day 3
Good evening ladies.
Well I’m really pleased to report that so far, apart from steroid rage today about hair loss, I haven’t had any SEs at all. So hurrah for that.
Pollyanne, sorry you’ve had a bit of an emotional meltdown. It’s really hard isn’t it, when you know it’s the drugs and you can’t control it. Loved ones do understand, but it’s always worth acknowledging when you know you’ve behaved out of character. I think it can help them come to terms with dramatic personality changes.
Sakura1971, I think being bunged up is far worse than the squits and so I try not to let it go on for more than a day. I find shredded wheat, linseed and prunes are a great combo lol! White mouth, thrush, cripes. I’m off to bed shortly so will have a good look.
Masha, hurrah for you with SEs but boo hoo for the shingles. Have a very gentle cyber hug {{}}. As if we don’t have enough to put up with.
Chezzap, I’m doing really well thanks. How about you? Good luck for tomorrow.
Boxofrogs, I’m sure you’ll have a lovely time being looked after by your mum. We all need some TLC.
Orangecat, it’s not your fault you got ill, so try not to feel guilty about the events you’ve missed or cancelled. Easy for me to say, but guilt isn’t going to serve any purpose. It’s not like you can learn a lesson and not do it again lol! Which in my opinion is about the only thing guilt is useful for. My OH and I had to cancel a longed for holiday we were due to take in September, and it is hard. But we’ll just have to have a better one next year. Sorry you’ve had to step off the chemo train, but hopefully it's just for a couple of stops. And toothache as well. Jesus, this is the disease that keeps on giving isn’t it?
Benedictus, I think you’re being exceptionally brave waving your family off and staying at home. Not sure I could do it. re hair, may I suggest that you don’t actually shave it off, perhaps get a friend or your hairdresser to give you a No.1. It’s quite nice having a bit of fuzz to run my hand over, although I notice that there’s really not much there now. But that’s what’s worked for me. Well, kind of.
Be thinking of everyone who has appointments next week.
Sweet dreams fellow junkies. xx
chezzap
Member

Re: Anyone starting chemo in July? We are now the July Junkies!

cheers Tamsin good luck for Tues hope your bloods pick up and start behaving themselves!!
benedictus
Member

Re: Anyone starting chemo in July? We are now the July Junkies!

Goodness Kat, you've really been through the mill. I'm glad that you're feeling a bit better and hope you feel resigned to everything you've missed - I think it's easler that way. Yes, the family have been at Hampton Court this week and have had a fantastic time. I've sat at home and have done very little apart from have hospital appointments. How great is that! My OH is already planning Paris at half term for everyone (apart from me - chemo week!!!) because my daugher is doing French and will be Y13 and then is talking about skiing in February half term with the boys "because they always go". I'm glad for them but sad for me....
I'll be interested to hear what the onc has to say. Will it be dependant on the results of your heart scan? Are you happy to give more chemo a go if you get the go-ahead? Did you have rads last time cos if so, I assume that's off limits this time? Goodness, it's like 20 questions!
Hair still hanging in there at this end. Although it's started falling out more today I haven't had the hurty scalp day yet. If I can make it last until Tuesday (chemo day) I think I will, then shave it off after that.
Hope things go really well tomorrow Chezza
Going to miss everyone this week. Hope all keep well and look forward to seeing everyone on the other side......
xx

chezzap
Member

Re: Anyone starting chemo in July? We are now the July Junkies!

sorry to hear you have such a rotten time Kat. I really feel for you. Best of luck for Tues. Im sure the onc will have something up his sleeve for you to beat this b**tard!!
orangecat
Member

Re: Anyone starting chemo in July? We are now the July Junkies!

Morning JJ's,
Did try and catch up but so much to read!! so I think I will just jump in. Well here I am have been in a dark place feeling sorry for myself but this wkd I have tried to reduce the painkillers and that seem to have lifted my mood. I have missed theatre, proms, a wedding and the last few days my brother was in the country and my nieces 21st and feel really bad that our hol was cancelled because of me. I am still exhausted but at least I can walk up the stairs instead of crawl and then need a sit down!! Having echo next week to check out my heart.
Do feel a bit of a fraud having stopped chemo (for now) but do so need to get over this episode. I'm curious what the onc has planned for me, but have to wait for Tuesday.
Tamsin are your family at HCP?? I didnt get my head shaved cause I left it too late and then had a sore head!! So have a few wispy attractive areas. Did wax my legs cause the hairs are hanging on by a wisper so was a doddle.
Mahsa shingles, what rotten luck but sounds like they are under control.
Piggsy sounds like #2 is being kind to you, def stay on the sofa and eat cake esp when brought by someone else.
BofF I had tooth ache, not fun. touch wood it has settled down but then you have the anxiety it will return.
Well I have been in the garden and dead headed for all of 5mins and then had to sit down. We have a new cross trainer I think the nearest Im going to get to it is with a feather duster!!!
Everyone else Im sending cyber hugs and lots of love to you Kat xx

Boxofrogs
Member

Re: Anyone starting chemo in July? We are now the July Junkies!

Yeh, not too bad Chezzap. A bit wobbly on the old pegs, so hobbling about like a feeble thing And feel a bit out of it. My lovely mum took me back to her's so being looked after for the weekend. Wishing you all good health.
chezzap
Member

Re: Anyone starting chemo in July? We are now the July Junkies!

Good to hear you are on mend
Piggsy how are you after number 2 yesterday???
Mahsa
Member

Re: Anyone starting chemo in July? We are now the July Junkies!

Hi Girls,
Hope you all well, and having a reasonably good weekend! Thanks for your kind words and cyber hugs.
After 9 days I am now free from chemo SEs, HOORAY. But putting up with Shingles and SEs of anti-viral meds. At least is not too painful and has remained in situ.
Hey ho, this will pass too...!
I am thinking of Julie too, hope she is not suffering too much after her 2nd cycle.
Take care,
Mahsa xxxx
Guest user
Not applicable

Re: Anyone starting chemo in July? We are now the July Junkies!

Good afternoon ladies

Hope all is well, and those that have been having bad times are doing better. I have a bit of a sore botty after letting myself go too long without a bowel movement - note to self not to do that again lol.

Glad to hear your treatment not delayed froggy. Hope all goes well for you Tuesday Benedictus.

With regard to those down days, I think we have all had at least one. I know on day 4 cycle 1 a good friend had to come and sort me out when I was having a complete fit about it all, and that's definitely not me so was definitely a lot to do with the drugs.

Off to meet up with a few friends this evening that I haven't seen since before the bc diagnosis so that should be interesting

With regard to the white mouth - watch for thrush. I have had it on both cycles. GP gave me Nystan oral suspension which seems to do the job (tastes of cherry which was an unexpected bonus). Pharmacist wouldn't give anything without prescription as over the counter stuff can interact with chemo meds.
Have a great weekend all
Deb x
benedictus
Member

Re: Anyone starting chemo in July? We are now the July Junkies!

Lynda. I think you need a visit to Benchland to sit on the "guilty' bench. Don't feel bad about putting your rellies through the mill yesterday. If they understand at all they will realise that you are 'going through it a bit' as well and won't be phased by things. Could you contact them and explain why things were particularly bad yesterday? Must admit I did very much the same thing and only later did I realise about the day 5 crash. At least we will be ready for it next time.
Re: your other post. I've just looked at my gums and they're very white as well. Another joyous SE I think!
Hope your OK-ish continues - or even gets better!
Many hugs to all xx

Pollyanne
Member

Re: Anyone starting chemo in July? We are now the July Junkies!

Morning my lovelies , Tamsin, frogs and Piggys thank you for your support, what I prob need is a swift kick to the butt!! I made everyone's life a misery yesterday. My poor OH sister and daughter . We're all so upset and today I feel so rubbish for putting them through that, note to self next time on days 4 and 5 lock myself away and don't bring everyone down. Slept well and apart from few silly niggly things feel ok ish. Hope all you ladies enjoy your Saturday Lynda xxx
Jacquie08
Member

Re: Anyone starting chemo in July? We are now the July Junkies!

Morning girls I was just looking to see if Annie62 had posted on here, we haven't heard rom her since wed. August's such a busy thread though that you do feel as though your post goes unread sometimes maybe Annie felt like that too? Glad to see you're doing pretty well on here I'm due dose 2 next week so some of you are just ahead f me xx
piggsytrotter
Member

Re: Anyone starting chemo in July? We are now the July Junkies!

6 x FEC-T, FEC Cycle 2 - hurrah!
Good afternoon fellow Junkies. Big hugs to all who need them {{{}}}. I drank deep this morning and thanked heavens for the picc line. Poor lady opposite had to put her hand in warm water to try and get the veins up and they still had trouble getting in. I was there forever. Because it’s 3 drugs and they put saline through between each one it takes ages. Then someone had a severe allergic reaction which caused a flurry of activity but delayed my escape so finally got out just before 2. I was starving. Had lovely pub lunch with friend who took me and am now slumped on sofa feeling weary. Printed off spreadsheet and will try not to take 3 steroids in one day this time round! No nausea yet, and got more anti-nause to take. Got steroid dry mouth, but that’s OK, I’ll take that lol!
Debaslicious, I got blurred vision and have got it today. Glad your kidney problem isn’t an infection but horrible you had to go to hosp.
Masha, shingles oh poor you. I hope it’s not too painful. Honestly, as if you need anything else to contend with. Cancer – just keeps on giving …
Froggy, sorry you’re feeling so down. I expect it’s because your levels are through the floor, that must have an effect on your mood whether you knew it or not. As well as a bad tooth. Having a good cry is natural, and you never know, tomorrow might be a better day. Just seen your latest post, glad it's not being delayed. The sooner we can get through this the sooner we'll start feeling more like our old selves.
Pollyanne, sorry you’ve been having a few bad days. Are the SE’s getting worse? Yes it’s sh** but we have to do it if we possibly can. It’s for our survival too, not just for our nearest and dearest. I think it’s easy to overlook that when we get so caught up in how others are feeling.
Beneditcus, glad you’re doing OK. The hair loss is devastating, but you will feel so much better if you can bear to get rid of it. My hairdresser tidied up what my OH had done, she went over it with clippers set to No.1. It looks so much neater, but it’s still coming out. I just don't notice it now. You’re right about ticking off the cycles. I’m a third of the way through now.
Ooh, tea and cake. If I could be ars** to get off sofa I’d organise some. Have to wait for OH to come home.
By the bye, is anyone else getting phantom nipple pain? It's wierd because I have no feeling at all when I touch it. I've had it from the day after the mastectomy.
Have a good evening ladies. Hope SEs are minimal and we all have a lovely, quiet, (or noisy if you’re up for it!) peaceful weekend. xx
Boxofrogs
Member

Re: Anyone starting chemo in July? We are now the July Junkies!

Senga, Deb, Benedictus thanks for your words of wisdom. Linda I empathise And hope you manage to feel a bit lighter of mood soon, and the daily struggle with se gets easier. On a brighter note my bloods went from 0.3 Monday to 1.9 today, so chemo not delayed. The body truly is an amazing thing. It's just such a shame it can't kick this cancer in the balls without help.
benedictus
Member

Re: Anyone starting chemo in July? We are now the July Junkies!

Well I'm doing OK here so I'll try and lift everyone's spirits . Fingers crossed your bloods are going to be OK Frog. I just had the very same phone call here. Clinic this morning and a call just now to say that I need to go in early on Tuesday for a re-test as my bloods aren't up to scratch. Going to mean a LONG day. As Deb says, stop poking and if you are really concerned mention it to the onc when you go for chemo. They will check it out there and then. The whole hair thing is very emotive - mine's started coming out in handfuls today and I'm really glad I'm on my own and not surrounded by the children. Feel I can deal with it better in my own time and then face them when they get home next week. And everyone says it is strangely liberating once it's done - I'm really hoping they're right!
Someone somewhere on the forum said that bad days are often followed by good days - don't know if it something to do with getting it out of your system. Hold on to the fact that tomorrow might be better. Lynda: really sorry you're feeling so rubbish. I've lost track of where you are - you're not in the middle of a steroid crash at the moment are you? Could be the reason for your foot stamping? I agree, you can't give up. None of us can and yes, it's going to be a sh*t few months, but if we do it one day at a time, or a week at a time, or work out some way of ticking the cycles off, we will get through it. What we need is someone to post from this time last year to give us all hope and to help us see a way forward. Come on someone......
Wouldn't it be good if we were all sitting in the same room with tea and cake and boxes of tissues. We'd get things sorted between us! xx

Pollyanne
Member

Re: Anyone starting chemo in July? We are now the July Junkies!

Sorry cant lift the mood having a real crap few days, wanted to wait till I cheered up a bit before posting, but had a complete tantrum earlier , only managed to lift myself from it when I saw the effect it was having on my big strong Oh, we'll I thought he was , poor sod was in tears cos I told him I wasn't doing this anymore I was giving up....I bloody wont!!! I can't after seeing what I did to him, sorry girls bet you need me whinging right now , I will dig myself out of it... I know I have to , I just hope you are all coping better than me right now x
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Re: Anyone starting chemo in July? We are now the July Junkies!

Big hugs to Frog and Mahsa

Dont feel bad about having a down day froggy, it happens to us all. Hope it went well with the wig and if you did cry dont worry about it. You are allowed to
Stop poking your good armpit though as that isn't helpful, which you already know. Hope they get your blood count sorted for you so you can get on with treatment

Remember that today is a bad day, but tomorrow doesn't have to be xx
Deb x
bruce01
Member

Re: Anyone starting chemo in July? We are now the July Junkies!

Oh Frog, sorry your feeling so down. Its natural to feel paranoid with every thing, big and small but a lot of it is because we feel so vunerable and fearful about everything that happens to us and imagine the worse. Hope it goes ok with your meeting with your wig woman. Sending big cyber hugs. Take care.
Senga xxx
Boxofrogs
Member

Re: Anyone starting chemo in July? We are now the July Junkies!

I'm gonna have a big moan. Bad tooth. Had to arrive at hospital early for session 2 as they want to do bloods again. my white count down in my boots. After a couple of weeks feeling well and positive, even quite happy, I've woken up today feeling so low. Think I have pain in my good armpit and convinced I can feel lumps. There really isnt anything there. I know I'm being paranoid and the more I poke at it the more uncomfortable it feels. I haven't cried for ages but can't stop. Gonna see wig woman before going back to ward. I'm in the frame of mind where I know I'm gonna hate it and gonna cry in front of her, like I did when I went to that Nicola Jane shop.
chezzap
Member

Re: Anyone starting chemo in July? We are now the July Junkies!

massive hug coming your way Mahsa
Yes Tamsin my turn at the bar again on Monday its coming round quickly three weeks has flown by. Im hoping it cant be any worse than number 1 and then will be a quarter of way through although now Ive got the port fitted when I start the tax going to have it weekly in smaller doses and not going to be taxotere but one from same family called paclitaxel. This way the SE are supposed to be less but the ball ache is you have to go every week
benedictus
Member

Re: Anyone starting chemo in July? We are now the July Junkies!

Thankyou for the hug. Feeling better .

You poor thing, Mahsa. Shingles is horrible at the best of times, but in the middle of chemo must be really hard. I think you need a group hug as well!
Thanks for the info about Emend, Sakura. I've also had sore eyes as well as blurry vision this time around. Fingers crossed I may avoid them next time.
Are you up on Monday Chezza?
Hugs all xx

Mahsa
Member

Re: Anyone starting chemo in July? We are now the July Junkies!

Hello lovely JJ's

Hope you all well! Is good to read all the positive notes about manageable side effects.

Today on day 7 of cycle 2 I have developed Shingles. Just wanted to let you know so you are aware that it can happen because of our low immune system. They look like blisters and appear in cluster form. They are itchy and sore /painful. I am now on anti-viral meds for the next 7 days.

Another joy of chemotherapy...

Take a good care of yourselves.

Luv,
Mahsa xxx
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Re: Anyone starting chemo in July? We are now the July Junkies!

Hey benedictus, have a collective hug from us lot

Yes Aprepitant is the magical Emend. I had the blurry vision, I had it on cycle 1 during first few days after treatment. Also had very sore eyes. Didn't notice it so much this time though.

Best of luck for tomorrow Piggsy.
chezzap
Member

Re: Anyone starting chemo in July? We are now the July Junkies!

brill news about your daughters exam results.
If you have emend they lower the dose of the dreaded dexamethasone. Im having an injection on MOnday of a drug from same family as ondanzetron and its supposed to last whole cycle so even though they give me the steroid with chemo I dont have to take it for the days afterwards so am hoping dont get that awful come down and restlessness.

good luck tomorrow Piggsy
benedictus
Member

Re: Anyone starting chemo in July? We are now the July Junkies!

Lovely to hear from everyone Excellent that your se's have been more manageable this time, Debs. Is Aprepitant Emend? I'm off for bloods and to see the onc tomorrow so I think I'll have a chat with him about this cos although I wasn't sick the Ondansatron didn't seem make much difference and I was popping Domperidone like smarties. I certainly got blurred vision but I put it down to a side effect of the steroids. Did you still have steroids iv during chemo? If so it's probably due to them. And yes, I've found it a right pain. Glad you've felt less dizzy - that's what I'm hoping for.
Glad you've got the go-ahead for tomorrow Piggsy. Hope it goes well
Feeling very weary today and a bit sad. My daughter got great AS results and I want to hug her but she and the rest of the family are away. Wish I was with them
Look after yourself lovely ladies x

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Re: Anyone starting chemo in July? We are now the July Junkies!

Captains log fec-t Star date cycle 2 day 8

Hi Junkies couldn't resist that lmao

Well I seem to have had a much better time this cycle than last over all, The Aprepitant was a miracle worker no vomiting and domperidone which i have stopped taking today. The lansoprazole stopped the heart burn just had a few days of diarrhoea but not unmanageable and was still able to go over to mum and dads today. I have felt a lot less dizzy this time too think thats because i didn't have to have the dexamethoshite he he
Had a bit of a scare yesterday as i have been having some kidney pain although no temp and was concerned that a i had an infection brewing and didn't want it to take hod when my immunity started to drop or b my poor kidneys were complaining!! Anyway I called the hotlone and ended up going in to be seen, thankfully no infection they have taken some blood and given me an anti spasmodic to ease the pain.
The only other se i'm getting is blurred vision has anyone else had this very annoying when texting or attempting to post on this thread lol.
Kat poor you thinking of you hon enjoy your "week off" and wait to see what your onc has to say they must have come across this before and have a plan B up their sleeve.

Positive Lady good luck with round 4 I am going to have a chat with my onc about taking the steroid as it really dosn't suit me that is reallu worrying me.
Chezza and Tamsin The hair thing is really massive but i can honestly say I felt must better when it had gone still get a shock seeing myself without hai though but have some lovely scarves and am now a dab hand at tying a turban
Deb I haven't had the temp thing, mine went up on day 4 to 37.7 but dropped back again!?!
Piggy Thanks for all the epic posts they make me smile when I am too knackered to post myself
Everyone else hope you are coping with all of this, I must admit it is tougher than i thought it would be
Lots of love
Debs xxx
piggsytrotter
Member

Re: Anyone starting chemo in July? We are now the July Junkies!

FEC-T x 6, FEC cycle 1, day 20
Good afternoon JJs. Out early with Daisy, and luckily got home just before it chucked it down. Then spent about 15 mins trying to tie a scarf so that it looked OK and wouldn’t slide off. Saw onc and had bloods done, all as it should be so full steam ahead for tomorrow. Onc is going to call me on Monday to see how I am. I remain amazed at the level of care I’m receiving.
Juliemb, glad to hear you’re doing so much better this time round. Makes being poisoned almost tolerable!
Bruce01, good to hear from you. It’s really hard to work out what to take when isn’t it. My OH drew me up a spreadsheet and I still managed to forget to take one of the anti-nause tablets.
Positivelady, Good to hear from you too. I think you’re the leader of the pack so look forward to hearing how you get on with the docetaxol. I too am dreading it. Like you I’ve been trying to drink more. We really don’t eat much in the way of processed food, but I’ve cut down on red meat as well as ham and bacon. I’m also going to try and have two meals in a week with no meat. I don’t want to become vegetarian as I find it’s quite a carby diet. I’ve continued with the 5:2 diet that I’ve been on for the best part of a year. One of the calorie restriction days was the day before my first lot of FEC and I do wonder whether that’s partly why I’ve been so SE free. Today is another CR day so be interesting to see whether cycle 2 is as good as cycle 1 has been. Couldn’t agree more about the picc line. Having blood taken was no problem at all today.
Benedictus, thanks for the tip about painkillers with Tax. I’ve always dreaded that one more than the FEC, but as I haven’t even got through cycle 2 of FEC I’m getting ahead of myself yet again lol. I’m going to hairdressers after she finishes tonight so she can clipper my hair and trim the wig. OH did his best but it does look a bit like a ploughed field!
Sakura1971, my temperature was all over the place on Day 10 which was my absolutely worst day. It was after I finished the last stem cell injection (I had 5 starting on day 5) and felt like I had flu. The highest it got was 38.3 but I didn’t call the hospital because I was sure it was a reaction to the jabs. Sure enough next morning it was back to normal. I must be honest and say that I haven’t taken my temperature since because I’ve felt so well. But that's me. Of course you must ring the hotline if you're unsure.
So nice to hear how everyone’s doing. Good luck to anyone else at the bar tomorrow. x