chemo kicks off 20 May - any good buddies?

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Hi Everyone

I have been away for a couple of days, so just catching up with all the threads. Can’t remember who as said what…sorry…so i will send a (((((((BIG HUG)))))))) to everyone:-) xx

Went to the Lake District camping at the weekend with some friend. Couldn’t believe that the rain stayed off, until the morning we left. My friend had a great idea and brought some wellies for us both…they were definately needed. The entrance to the field was knee deep of mud. I felt like a kid again playing in the mud :slight_smile: My 13 year old disowned me at that point. The campsite was set in a valley surrounded by hills, absolutely beautiful. Sat around eating baked beans from the tin and yes it did get a bit windy (just blamed it on the cows in the next field)!!! It was good to get away and forget about BC and the yucky treatment.

Now back to reality… had my blood test this morning and start my new treatment tomorrow. I will be doing Tax, started taken the steroids today and now bouncing off the walls. I am feeling really nervous and scared, about starting all over, especially after the side effects of the Xeloda tablets!!! Any advise or what to look out for, please?

Take care and ((((((HUGS))))))) again :slight_smile:

Kirsty xxx

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Hi all

Well I did it got the dreaded CMF and so far feel loads better fingers crossed taking it easy. Got my blood results today and for the first time since this started they have fallen dramatically could explain why I felt so bad.

Hows everone doing and can I just say thank you to you all for being there last week when I needed someone big kisses and hugs.

Joanne

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hiya all
Will pop on later but just to let you know No. 6 done! Im done, yippee. Off for tea, tv and very large wine or two (as well as lots of water of course). Not without fun of course, bloods were a sinche yesterday but went into hiding today, my hand was no chance, and inner arm vien went into hiding as soon as saw needle and was so good yesterday, so ended up using the delicate vien (as they put it) on inside of wrist which dont tend to use too much in case it pops (thanks for telling me just as doing it), hurt lot more than normal ones but didnt care! Hope its okay but going to stop on this forum to keep up to date with you all - onc’s assistnat week on friday to run through and explain some more of my path report to me as was really upset at how poor my diagnois was in terms of NPI or whatever they call it.

Nicky - good luck for tomorrow.
Kirsty - tax isnt as bad as some of the reports I read on here, honest!

Speak to you all later, after a glass of wine or two and big brother (saddo or what). Think I might celebrate at the weekend - cant believe Ive done it, and here’s to rest of you finishing
Thanks for all your support, coulndt have done it without all your help.
xxx

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Yeah Lisa. Congrats on the last one.

They used a vein near my wrist last time and it’s still bruised but not painful but black. Why do they say these things while they’re dosing us… dark sense of humour me thinks.

I now have a glass of wine and am chinking with OH for you as we speak… chink. Ok here comes the fan fare (you’re all going to get Sooo bored of me I promise)…

Ba ba ba Baaaa (trumpets), bang, bang bang (party poppers)… BIG HUGS.

Wooo Hooo.

Angie

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Joanne, hope you feel better soon. Another dose down at least. Fan fare for you too.

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Thanks angie - chinking with you, yippee, can celebrate yours soon too!!! vien on inside of wrist which apparently dont use much, hope they repair themselves - hoping to get about 1 month off before rads!!! wooo hooo!!!
xxxx

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Lisa… what kind of a dog do you have? does it like Collies?

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Hi
Ok this time I must be able to say it
Raaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaa
Raaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaa
Well done Lisa for finishing.I am so so pleased for you that that part is completed, spend a bit of time enjoying that moment before you face the next thing on your tick list. Don’t go too mad on the drink until the chemo gets out of your system a bit, you might turn green or something!!You will be the guinea pig going into rads first from the look of it. Just like a Trekkie, going out into new frontiers. I am the green one wishing I was running through the line with you this week. It has been a tough road to walk down and will miss my twin sharing my symptoms, although it looks like I have saddled poor Angie with sharing them now. Sorry! Fantastic stuff, finished. Glad you are staying around, we need a cheerleader!
Angie I love the part about not turning up for the 7th dose and then remembered Joanne, Julia and I have to not turn up for the 9th dose, what a thought!! Julia and Bevy how are you?
Nicky glad they got the bloods and anxiously waiting to hear whether you tipped the balance over the magic numbers. I so so hope so but know that if not you will still be able to see that end line so clearly for this part of the circus. Hoping the last one really powers its way round those limbs to hit the right spot. It has been a good spell for you, when you look at the long term part, rather than the dire side effects and hope the news keeps heading the right way for you, will it be another scan after numero six? Angie I have noted the film down as the brain is addled, seem to be reacting mentally to the 5FU, like driving me mad not being able to remember anything or say what I actually thought I was going to say. Who the heck keeps hijacking my mouth and making me look like so silly.
Kirsty, i am so glad they have a plan and hope tax is kind to you. Is that the one where you are advised to paint your nails to stop the uv? There are lots of people to ask about it. Did they tell you any more about what they think happened? I assume this means your regime is ET then? With the 4xepi and now 4 x T. Wow will you develop extra sensory powers from this???Big hugs for tomorrow and hope it goes well. Sorry you are back on needles with us again.
Lorraine we have not heard, how did you get on, I am feeling anxious for you and hoping you are actually busy on one of your lovely trips or visits. Hope to hear from you soon.X X
Joanne hooray you sound strong!!! Does this means I don’t have to chase you in there next time too and the next all the way to November!!! Oooh I don’t mind, if that gets you there I am doing it. It must be horrible to go from so well to the other way but hopefully your body went into shock on the first with 3 drugs and the next will be improved too. No heroics, just take your tablets!! You are stuck on this for a while, it won’t be long. LOL can’t believe I mini moaner said that!! The other thing is to space the anti sick tablets out equally to get the best effect and cover.
Sorry if I forgot anyone, I am sure I have. I am off to the onc tomorrow to report back on how I found CMF on the first double dose. I looked back at my posts and can see that I was convinced that I would be walking in there saying - that’s it I 've had enough, one more and I am out. So strange to hear myself say several times lately, if it stays like this I will go right to the end and get the best odds that I possibly can, so no regrets. I suppose I learnt a lesson that I should just wait and see how it goes, because no-one can predict. The nurse told me that people are pretty much the same on both E and CMF, before i started it. I would have been better not knowing that useless fact.
Another useless but funny story. I was complimented by a lady (who I could see had had a facial peeling and botox to her upper lip, that was not quite behaving itself) that I looked fabulous (LOL really hard at this point, sheer lies to be kind) . I said I have a really flat and fat looking face, I think I look piggy. She said but you don’t have any wrinkles at all, that would cost you a fortune in the parlour. So what do you think, are you less wrinkly? Sorry youngsters Lisa and Angie, who don’t know what a wrinkle is yet. When we deflate - oh promise me I will deflate and please make it without any hard work at all in the form of diet or sporty things from me!! - will I be wrinkle free or will the dreaded curse of the wrinkly prunes become something I wear!!! arghhhhhh.
Good luck this week all of you in the sand bunker recovering.Olympic gold to Lisa!!
Lily x x

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Lily you appear to be at the same stage as me… are you bloated up like a balloon?? I feel hideous!! :slight_smile:

EM x

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hey, i might be younger but think Ive aged lots recently. Had a couple of glasses but will stop now to the weekend! I think in terms of side effects Ive got off lucky compared to some. however I think we all think its so harsh at times then a week or so later when coming round we feel we can handle it and give others such advice - such a source of comfort to others. I cant stress so much (crying now) how much you hnave all supported me through it, and side effects of this one will be so much easier to handle knowing its the last, fingers crossed. Off to get the bleb checked out tomorrow and swelling to arm - will get so worked up about next stage but sure you lot will keep me saine and hope I can give you postives about the next stage.

Angie - my dog is a little nutter who is soooo domineering but I adore him, got me through sooo much. He’s just a Heinz, cross between a Lurcher and terrier (i know god knows how it happened), got him from a kennel and totally pulled us in, only one that didnt bark, well until me and hubbie got him home. His party tricks are, if you say the word Ola, he howls, if you say “thout you were going for a burger” (quote from committments), he howls for ages and barks - totally bonkers!!

startreck to the rescue, I’ll trek there first and report back to base!!!

Love to you all and so much thanks
xxx

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Lisa - fantastic! Well done! Yeee ha! You deserve the vino - but have no idea how you manage it after chemo :wink: Keep us posted as to how you’re getting on and what goes on with the next stage. Hope the side effects are minimal this time but at least you know they’re the last and you can chuck all your left over tablets away, well give them back or whatever you’re meant to do.

As to the wrinkles I can’t say I’m much different to pre chemo. I bloat up and have a full face whilst on steroids but that calms down quite quickly once I stop them. Going back to a previous question about what animal are you, I feel like a new born kitten at the moment - a lovely (?) hairless, smooth skinned thing with a bit of fluff on top LOL Not as cute - obviously - and luckily not blind :wink: Can’t wait to be the panther again!

Hope all goes well, post chemo for you all, esp Joanne who’s had such a rough time recently. All those on ‘good’ weeks, have as much fun as you can manage or are allowed, we’ll get through this. Kirsty - great to hear you had a weekend away from it all and the weather held for you. It’s so nice to take some time out isn’t it?
Lily - I will be giving my onc a long questionnaire to complete today which will include the topic - ‘when’s my next scan?’ I hope to get one after No 6, as did Lorraine, which will give them a starting point to see what Femara does (or doesn’t) do. Will not enjoy the scans - who does? - but will be even more anxious about the results. All the time I’m on chemo I’m assuming there’s nothing else going on in my body (as I’m sure we all are) but will be more concerned after it’s finished. Just hope the hormone therapy works better than Tamoxifen which let me down big time.

Take care all

Nicky xx

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Hi all: It’s my Thursday catch up.

Lily - glad Monday went OK for you and your family, as I said in a previous message, no matter how ‘right’ it was for your MiL to go, it is never easy. Hope you are all on the way up. You mentioned supplements for the methotrexate - I’ve not had any, what were they pls? Memory is starting to play tricks - like trying to remember names - “you know the girl with the blonde curls, used to go out with the bloke in the blue Rolls, he was something in IT, Oh you know who I mean!” Don’t want to think about the 9th dose as my onc is threatening to start my rads then - just in time for Christmas, which I hate anyway. Think we may have an interesting discussion about that!

Well done Lisa, got to the end - now its onwards and upwards.

I keep having to go back through these posts to see who is doing what and then I lose my message. Everyone seems to be OK, coping the with horrids and trying to make the best of it.

Every time I tell someone new - have just got around to telling two of the neighbours but sworn them to secrecy from the rest of the gossiping village - I end up saying I know I have no choice, but I don’t have to like it. I can’t wait to get through to the end of the poison and the rads and then try to have something resembling a reasonable life.

Went out to dinner with old friend whose sister is same age as me and has had this disease. He says she has had hard time being made redundant from Guerlain (she was their lady at Harrods) just after diagnosis and not being a computer person does not have access to all your wonderful support. He is going to get her a laptop and then I shall point her in our direction.

I keep catching a glance of the back of my bald bonce in the mirror and it looks horrible! What with the battered boob, bald head, no eyelashes, round face with lumpy skin (thanks steriods) and fat middle, no chance of anyone fancying me who isn’t blind drunk or desparate!!!

Nicky: I think you are right about writing down your questions and giving the list to the onc, they start to answer the first couple and then go off at a tangent and you lose track.

Am going to do some work now and will read through all the other messages again later.

Hugs all round, keep going girls - there is an end to all this cr@p!

Julia

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Hi girlies,

So glad to hear Lisa it is over for you! well done and enjoy the freedom.

Thanks Angie for the concern yeah I have been feeling very sorry for myself (not proud of that as I know so many of you have suffered more o.k. I am a wimp) but just as I was beginning to feel better low and behold the viral infection has re-visited me aghhhhhh it is due to my non existent immune system. Any ideas on giving it a bit of build up? I must look at the chicken soup recommendation. I notice a few of you have scans? nothing like that has been suggested to me does this come later or does it depend on the chemo you’re on. I have now had 3 FEC treatments and have asked for a change of venue for my last three to a different hospital as I felt increasingly anxious about the administration of the treatments and had lost confidence just hope I haven’t jumped from the frying pan into the fire.

Lily have you tried the aloe vera juice for your mouth problems? may not assist at all but might be worth a try and couldn’t do any harm.

love and hugs to you all

Bev x

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Ohhh my neuts have up and left me… .crashed from my happy 14.6 down to 1.6

Funny movies at the ready

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or maybe they’ve just learnt to hide in my feet or something :slight_smile:

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I am so excited… soooo excited. In the midst of all this chemo chaos I failed to notice tat something I’ve been waiting over 10 years for happens next week. CERN turns on the super collider. This may or may not mean anything to you all but it’s the biggest and one of the most important scientific experiments mankind has ever done, we’re talking black holes and big bang theory and they turn it on next week.

The day after me and Tommy’s 14th anniversary too. I’m betting we don’t even get to sleep that night.

I heard about this project when I was back at school. I can’t believe the day is really nearly here.

If you google for big bang day you’ll get radio 4’s schedule for next week.

Sorry I know this isn’t chemo related or anything but it could very well be one of the defining moments for this decade, or even for mankind… walking on the moon… pah I say.

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Hi,
feeling good enough to really have a good time, apart from the dry mouth which stalks me constantly. So annoying that my eyesight is holding me back so much.With the doses so close, I have few days before the effects of the next one cut in, just stops me from driving much and if I ignore it gives me a slight headache from trying so hard to see clearly. It is on the level that in a small supermarket, I cannot stand in the centre and work out what is in a tin on either side. They are now moving me from prunes, fruit, senokot, etc to immodium!!! How fast do thing change (no pun intended) These ar all slight and overall I feel like I got my old self back, so pleased with it. Told the onc this today and said will stay to the end if it continues to be ok. I tried to find out what difference staying to dose 8 will make on this regime, but his response was the trial results will tell us that. I would be so sick if I made the wrong choice. Julia,the supplements I take are folinic acid, a B vitamin, and they have to be taken to counteract the methotrexate attack on the mouth. Most people seem to get them I think but my mouth is suffering particularly. The odd thing is that you can’t take them while on methotrexate so have to wait 24 hours from the dose, then take one tablet every 6 hours, for a total of 6 tablets.I really notice when I start and stop taking them, very good. Joanne are you getting them? Speaking of extras, the onc has decided he doesn’t like my reaction to the cyclophosphamide so I am getting ‘a piriton shot’ before each dose now!! I know which kind of shot would be more fun but will settle for it being one just added to the cocktail going in my chest rather than in my arm. He was fascinated by my second daughter (did similar with the eldest) told me I had a beautiful daughter and then wiped the smile off her face by telling her he could see the likeness between her and her fat chemo face Mother (Me!) LOL it was a much better compliment for me of course!!! He had a ferret and tells me the port has to come out after chemo, so yikes more surgery this year. I knew it was too low in the breast and madly positioned under 3 inches from where my tumour was, on the same side so where I will be fried in rads! He says the sight problem comes from the 5FU but epi did that to me too but not for so long. The 5FU also causes chemo brain and boy can I notice that. Joanne and Julia is it getting you yet? Spent the rest of the day discussing the merits of sheep, horses and the geese that chased us with my Grandson, while testing out some yummy banoffee pie that was amazing but came at a cost, to my tummy!
Millsy hi how are you, I have spoken to you somewhere else too, the bloat went as soon as I moved from being bunged up to going the other way, if that helps you find a cure. I am fat though, it won’t go back in. The bit I hate most (it was a tough decision to be fair, with so much choice of bits!!) is a bulge in the middle just under my chest and I hear that is very hard to shift -fab! I love the dog stories Lisa, mine sings to 999 sirens going past. Hang in for the tail end of this last dose and every day is the last one of those. What happens next for you and whats up with your arm? Still really excited for you.
Nicky I have not read up the hormone part yet, is femora one of the aromatase inhibitors? Hoping to hear you got your dose or alternatively that you have some nice days planned as compensation. I dread getting results. I have been frantically trying to spot your appearance, do you have a name or channel or date? Julia you lose your post if you turn back a page but Nicky’s advice to click and save it works. Bevy I am really feeling for you as I went through a heavy spell with 3 and 4. So sorry you have it back, would the GCSF injections help you at all? Good luck and hope you are not too miserable with it.
Angie that was a Wall Street crash, unbelievable, get giggling again. The super collider WHAT! Enjoy the big moment.
Hugs all round and well done everyone for fighting their way through August chemo.
Lily x x

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Sorry hope no one minded me ranting about the super collider. It’s just I’ve been following it for such a long time. since 1984 it turns out… how orwellian!

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Well the deed is done! Hooray, No 6 out of the way. Not celebrating yet as feel cr@p and very tired. Had a LONG day at the hospital, bloods weren’t good enough so had a re test done and just scraped through. Veins not happy so a long time having chemo, last one to leave so I put out the lights - only kidding. Managed to hold back the tears till I got in the car, this is SO tough, but hang on in there girlies we’ll all get there. Back from the being a kitten to being a slug for next few days, but with any luck can pick up then and enjoy a few things like anniversary, prize giving at my daughter’s college and a bottle of champagne when my taste buds are up to it. I will have scans in the next 3 weeks plus a blood test to see if I’m post menopausal, if not I’ll be joining Lisa on the ovaries out list.
In answer to some of the questions, Bevy, I’m being scanned as I have secondaries so they need to see shrinkage/response during and after chemo. I’ll have them 3 monthly thereafter (guess you’ll all be able to see me glowing in the dark) until they can string them out to 6 monthly. This is to see how I react to Femara (yes it is an AI, Lily, also known as Letrozole) Although I don’t like scans, especially the CT drink beforehand, at least I’ll know what’s going on whereas I had no idea Tamoxifen had stopped working for me.
Update on the Sky News front! In hospital yesterday there was a young, and I mean young, girl talking about the interview she’d given to Sky the other week. She says it will be on this Sunday as a feature on all the Sky News bulletins throughout the day. If my bit is used I’m sure I’ll only be background but if I’m on I was wearing my fetching yellow jersey pull-on ‘hat’, a green V neck top and was reclining (?) on one of the beds having Epi pushed into me. I don’t think I’ll watch on the day as I’ll still feel too rough and it will only bring it all back. Will record it though or get family to watch and see if it’s worth it. The feature is about funding so hopefully covers it well.
Angie - I thought the CERN thingy marks the end of the world as we know it? I only read a brief article at the weekend so do we hold onto our hats (and in some of our cases, wigs) or not?

Sorry if I’ve forgotten anyone, but take care all, have a good weekend (even if it’s wet and miserable AGAIN) and recover well if you’ve just had chemo and keep well if it’s due.

Nicky xx

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Hi All

The first Tax went well, even though the nerves were taken over. They also had to use the vein near the wrist, was painful going in, but put on a brave face. I am now taken it easy this morning. Woke up with the dreaded runny bum and feeling sicky:-( Started using difflam to keep the mouth healthy and keep the dreaded ulcers away. Also using Aloe Vera toothe paste, which is really good. Going from past experience with Epi, i am doing my girl scout bit and being prepared.

Lisa - Congratulations on your last one…Yipee!! You deserve a glass of wine or two, but take it easy.
Bevy - Hope you feel better soon. With a low immune system just take it easy.
Nicky - No6 done. Happy Anniversay, what date is it? Will keep an i out on the Sky News, especially the yellow jersey pull on hat :-).

Hope everyone else is pulling through. Have a good weekend and take it easy

Kirsty xxx