Starting chemo in February

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Evening All,

Thanks for Brad’s birthday wishes. We had a lovely day, Brad said he had a brilliant time and of course I embarassed him. He did get the birthday song at the meal and I got out the baby photo album. However , Brad had already been through the album and taken out the naked bathtime ones.

Adi-I’m also suffering with feeling hot. My temperature is higher than usual between 36.8 and 37.4 but the Onc says that’s normal on Tax. I need the window open and Brad complains that it’s cold. Also haviong night sweats but they don’t seem to be as bad as they were on FEC.
I’ve also got weight gain. I lost a stone between diagnosis and surgery but have put that back on and more. I’m sure I’m developing a moon face too and when I wear socks, they leave a horrible inprint around my ankles

I was supposed to go back to work today but couldn’t manage it. I’m feeling so tired now and sat around in my dressing gown until 4pm. Have just come to my mum’s for dinner so am borrowing her lap top. I will get my one sorted out tomorrow.

My nails aren’t too bad. No sign of them lifting and they didn;t hurt like the first Tax. Maybe the defrosted frozen peas had the desired effect.

Has anyone heard from Donna?

Al, glad to hear you’ve been enjoying some good lunckes and that you ended the dya with 2 eyebrows! Well done and good luck for Wednesday. Those whities will be fine, I know it!

Sal- glad you had a good time in London and that you enjoyed the show. And Turkey is just around the corner. Sod the weight gain fo now, go and enjoy the food and cocktails)

Lizzy- Sorry to hear about your sore mouth. When I was admitted I had mucosis and used paracetamol liquid, used this to swish round my mouth, it helps a little with the pain. have you got any calpol 6 plus or equivalent?

I’ve got a follow up appointment with Onc after the last chemo. They said it was for a tox check. Has anyone else got this?

Hugs and postive vibes to you all,

Lisa

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Morning Ladies hope you all ok. Truck hit me big time and just coming out of it today and then I go back again tomorrow. Oh well should be number 8 tomorrow and then I can say 4 to go!!! That will be a lovely feeling.

Sounds like everyone has had a lovely few days celebrating lots of different things, great to hear. I hate being at home and when I do go out although a struggle I feel so much better mentally.

Sorry to hear you ladies having trouble controlling temperature, I am about the same as before, always felt the cold but occassionally have the need to strip off.

Well at least some of the fluid retention has gone now, but it was awful. Weight gain is becoming a concern, I know I should be worrying about other things, but can’t help it. Got nothing to wear and don’t feel up to shopping as do not want to buy ‘big’ clothes!!!

Lisa - good you finally got a date rather than just waiting. Sorry you not managed to get to work. You have done well so far.
Good luck tomorrow Al with your last FEC. Hope you also get some idea of when your rads start. Sal - they have timed yours just about right which is good. We need to know our next steps don’t we, nothing worse than just waiting.

Lizzy they seem really well organised over there in Spain and it will be nice for all your rads ladies to keep me informed as that will be my next step.

Good luck everyone and lets hope the SEs decide to miss us this time… One can hope:) Take care. Adi x

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Morning girls,

Adi, I still can’t believe how well you are coping on such a strong regime, well done, I don’t think I could do it!

Lisa, will try the paracetamol trick, we have something similar here for the kids, thanks for that. I can’t answer your question about the follow up consult, as I still have herceptin til next April and see my Onc every 3 weeks anyway. But it sounds good.

Al, my onc prescribed drops for my sore eyes, they are dexametasone and worked like magic, maybe you could ask about them. Yes, I can speak spanish, most of the staff only speak spanish, but my onc can speak english so she talks to me in english and I respond in spanish, that way we both make sure each other understands. it seems to work, and she loves to practice her english with me I think.

Sal, I liked your description of ‘huge stiffness in the buttock area’… how are your se’s now?

Hope everyone else is OK. I am having some problems getting my breath just lately, it frightened my last night so another reason not to sleep. And it usually passes by the morning but today it hasn’t, kinda feels like someone has filled my lungs with wet cement and it’s slowly drying!! I hope it’s just an se! has anyone else experienced this, and its worse when I’m still, it’s not exercised related.

Better go, it’s that time again, schools out! Just made summer squash, carrot and coriander soup… and I have eaten three bowls of it!! I wouldn’t mind, but I have also had two big bowls of cornflakes, and fried egg on toast!! Whats the matter with me!!

Lizzy x

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Hi everyone, sorry not been on for a while, my partner works away so when he is back home we make a point of getting out and about etc… He has gone away working again now: (
Hope you are all doing okay? I had a quick read of all your posts, will catch up later!!!
I am also having the hot thing with TAX have to have windows open, also the steroids don’t help with the hot flushes!! Well got my last TAX tomorrow then it’s just Herceptin till May next year, got my dates for Rads start 11th July, set up scan is on the 23rd June.
I have been freaking out abit lately as have this tender bruised pain on my affected side on shoulder blade, it only hurts to touch and if I lean on it, I phoned my BCN she didn’t feel me with confidence by just saying "umm maybe see your gp then if he thinks it’s anything he will refer you, no reassurance or anything considering I was abit upset on the phone I thought she might of been abit more sympathetic??? I saw my gp he had me doing all these arm stretches, hitting me on the back etc to she if it hurt, he thinks it’s muscular or maybe from surgery?? You know what its like you just always think the worst, I’m still not convinced, has anyone who has had surgery yet had this??? It doesn’t hurt all the time only if I touch it stretch my arm, lean on something and it’s just a bruised feeling not an ache? Sorry I’ve gone on abit about this…

Will have a read up abit later.

Love to you all

Donna xxx

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Hi everyone

I too am flushing frequently and was throughout quite a lot of my FEC, which finished a couple of weeks ago. I’m due to start taking tamoxifen - so I guess this is just going to be the story of my life from now on. Unlike everyone else my ankles are ok but I do have fat fingers!

Feeling pretty good - think this is mainly due to knowing that chemo is finished. Met other forum ladies from Portsmouth area for coffee today and had good chat.

Donna - I have vague feelings of discomfort in my back, which I think are muscle related - but are not really that painful. Does it hurt when you exercise?

Adi - hope all went well today - you are really being dosed up aren’t you?

Lisa - hope you getting some energy back. I’ve not heard of a tox check - maybe someone else has.

Is everyone having rads? My onc said that I didn’t need them, but still referred me on to a radiotherapist to talk about it and its up to me. Guess that I will have them unless she really says something to put me off it. Wish they could just tell me whats best - they are the experts after all…

Take care everyone - soon all these SEs will be behind us…

Love Helen xx

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good to hear from you Helen. I am having rads, they talked me into it. 25 sessions. Once you get to speak to your radioligist and they describe how it works you will be better prepared to make a decision.

Is anyone on here from the Northamptonshire area? When we move back to the UK in August I will be in Earls Barton, and I will need to finish my Herceptin off over there. I am a bit worried about the change in docs/hospitals etc. I expect it will be done at Northampton General.

Feeling a bit better this morning and not as though I have a sumo wrestler sitting on my chest! Off to have my spinach and egg for breakfast and a boatload of vitamins.

kisses xxx

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Hello all,

Welcome back Donna, sorry to hear about your concerns i have no pain but still have numbness and odd stabbing pain in armpit area, i had 13 nodes out.

Glad to see you are feeling a bit better this morning lizzy, i have had breathlessness this last time never had it before, its gone now along with all other side effects so have absolutely everything crossed that its the last time i will ever have them!

Helen i think most of us are having rads, its a case of throwing everything possible at this little bu**er and as we have all gone thru the chemo am guessing the rads will be a walk in the park.

Al have got everything crossed for you to get your last one today. If eating lunches could improve wbc i would not think you would have any probs!!Hope you get some news on your rads.

Adi i think you go today too …one step nearer that finish line and although you still have a few to go what a long way we have all come since february.

Lisa, Glad you had a good time for Brads birthday had to laugh at him being one step ahead of you and removing the pics…never mind you can always catch him at his 21st!!

Well am feeling back to normal this morning energy back fluid gone off ankles…cankles never a good look! Nasty mouth taste gone am still taking lanzoprazole for the heartburn but can live with that. I keep thinking that i will be packing my suitcase on the day that i would normally have been in chemo unit…never thought the end would come but it does, i feel lucky that i have never had some of the awful se’s that you girls have but would not want to do it again.
Hope you are all ok going to tackle ironing now its been sitting in a corner growling at me for over a week now!

Lots of love to all

Sal xx

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Morning All,

I managed to get my lap top fixed yesterday, so am back in the e world. Still not back at work, I still feel so tired with no energy. The way it’s going, I won’t be over this chemo before my last one on 14th.

Good to hear from you Helen. I’ll be having rads but not until after my surgery so I think it will be August before I start mine. I’ve also heard that radio is a walk in the park compared to chemo. Let’s hope so!

Sorry that you have pain in your shoulder Donna. I haven’t had any pain but I did have a nasty rash that came up under my arm and of course, I thought the worse and I worried myself silly but it turned out to be a fungal infection. If you’re not happy with what your GP said, why don;t you mention it to your Onc- are you having your last Tax today?

Al- Got everything crossed that your whities are behaving today.

Sal- Brilliant that you’re feeling better and that the SE’s are almost behind you. I hope I’m not too far behind you. And yay! no cankles in time for your hols!

Lizzy- Glad to hear your breathing is better this morning. You’ve inspired me to make some soup. I’ve ditched the healthy eating a bit (had a takeaway curry last night) and don’t think that’s helping with my energy levels.

Good to hear from you Helen and well done for getting over the finishing line. It’s great to hear your’e feeling pretty good. I haven’t met anyone from the forums yet but am going to the Younger womens meeting on 1st July.

Need to get myself motivated to get off the sofa and go to the shops. I bought a new duvet cover and when I came to wash it, it still had the security tag on it. Now I can’t find the receipt so I’ve got to take it back and ask them to remove the tag and convince them I didn’t shoplift it. Better go and draw my face on so I look a little more presentable.

I got referred to as ‘Sir’ yesterday. Was standing at a till and a lady said ‘Is someone helping you sir?’. I was in my balding glory and turned around. She was so embarrased an apologetic. Has it played on mind since? Yep! so fed up with my appearance, I heard a little boy say to his mum ‘Did you see that lady mum?’ I started to walk quicker so I didn’t hear what came next. I feel so ugly. At least Brad and Gucci don’t care what I look like.

Love to you all,

Lisa

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Good to hear from you again Donna, and glad you’ve had your laptop fixed Lisa. Sorry you’ve had a few upsetting comments Lisa. I tend to zone out so I can’t hear what people say (i always go out bald), but there are often stares. When we were out lunching there was a woman on the table next to us who was blatantly staring at me, she turned her whole body round to look. I should have just waved at her, but instead I tried to out-stare her. I don’t mind it when kids do it, as they’re too young to know any better, but old women should really have more sense.

Well, its offical, i have been well and truly fecced, for the last time! Yippee. My neutrophils just scraped though at 1.1 so no delays. Phew. It was quite unpleasant though - the first cannula attempt was unsuccessful (apparently because I was “tensing” my veins so she couldn’t get the needle in far enough) and resulted in a haematoma, so she tried again in a different vein and eventually succeeded. Then I thought I was going to be sick part-way through the FEC, and I had another allergic reaction to the E bit. But hey, its done now, and I made it home to my sofa without being sick.

Helen - have they told you the stats for what rads would do for you? My onc told me without rads, there was a 1 in 3 chance of it coming back; with rads it was 1 in 10. I was never given the option though, I was TOLD i was having rads. But I would have had it anyway, reckon its best to take everything they can throw at it. Good to see that another of the Feb girls is finished chemo, that’s 5 of us now I think? Hope the rest of you don’t have too much longer - adi I think will be once of the last finishers?

I have finally got my rads date! I asked the BCN today if she could hassle them for my start date, then when we got home, there was a letter from the hospital in our letterbox. So my simulator/ planning session is on the 23rd June, then I start on the 28th, and dont finish til 3rd August. 20 sessions plus 5 boosters. So its not looking like we’ll have time for a holiday before they start - i was expecting to start in July. But should manage a weekend away, then could go away in August/early September instead.

Lizzy- glad your lungs are doing better now! Must be a horrible feeling. Hope the mouth is better too. Have you read the radiotherapy booklet from this website (somewhere in the publications section)? I got one from my BCN and it might be good to read alongside your spanish version so you haven’t misunderstood anything. I’ll let you know what they tell me not to do when I have my planning session on the 23rd. Hopefully I don’t get too many rules! When you move here, you might find they do the herceptin at your home - that’s what they do up here anyway. You get the first two done at hospital, then for the rest a district nurse or equivalent comes round and gives you the herceptin at home, so you might not have to go into the hospital if you’ve already started over in Spain? Maybe worth starting a separate thread in the ‘in your area’ section if you want to see what the hospitals in that neck of the woods are like.

Sal - so how many days til you go on holiday? I bet you can’t wait. As Lisa says, glad your cankles have gone! How are the stiff buttocks?!

Right, I think I need to nibble on some food and take some Dom P now.

Hope you’re all well and hope your last Tax today went well Donna.

Al x

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Well done, Al.

I’ve been following you lot and it’s so heartening to see you all getting through to the end.

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Woo hoo Al !!!

Congratulations ! Lets hope se’s are minimal. Glad you got your rads dates, you start the day before me so we will be travelling that road together too !

Hmmmm…not that i am counting but i now have 11 more sleeps till holiday, but have got rads planning to do first!

Had another chuckle at your post, there is always a lunch involved somewhere! A girl after my own heart. Maybe you should change user name to ‘theladywholunches’…often!!!

Only a short post cos posted earlier, just wanted to say well done!

Sal xx

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Thanks ladies, appreciate it. Though I don’t think I’ll feel like celebrating ‘the end’ until next week when my sicky feeling has passed. When do you finish choccie?

I’d love to be a lady who lunches every day, sadly, work and finances probably won’t allow that! I’m quite pleased that my rads time is 11.30am though, as this should mean I can still make it to any lunches that my friends are having! Unless rads totally knackers you immediately after. I guess I’ll play it by ear!

Al x

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Woohoo Al, well done!! congrats congrats congrats!! I am so happy for you, let’s hope your last se’s are minimal and you can really celebrate soon… yippeeeeeeee

Lizzy xxxxx

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Lisa, when is your masectomy? Is it soon after you finish? I am sure Donna P is having hers very soon… does anyone know?

xxxx

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How weird Lizzy, Just wished Donna P good luck on three word summary thread, her op is Friday

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Yayyyy! Well done Al. Sorry you had such a crappy time of it though. No more digging about your veins now, they can only get better! I hope your SE’s are minimal for the last one.

Lizzy- My mastecomy is 18th July, seems a long way off but I know it will come round quick. I’ve linked up with Donna on another thread. Thanks for thinking of me.

Lots of love xxxxxxxx

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Al, last poisons for me 23rd June if WBCs hold out. Have been fine for the first 5 but the last one was only just, and SEs have done me in this time so I really know what you mean about wanting to get over this lot before celebrating. I suggest 3 weeks after your last one should be the “woohoo!” day.

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Funnily enough, i have a post-chemo celebration already arranged, but I’m not quite waiting 3 weeks. We’re having a combined post-chemo, pre-run drinks and food celebration on the 18th, which is the night before my race for life! If anything, at least we’ll all have a good excuse for not being particularly fast around the course. I reckon I have a good excuse already, but I need to handicap my friends a bit…

Good luck for your next/last choccie. I’ve only just scraped through a few times, but the good ol’ neutrophils seem to have amazing powers of recovery overnight if I fail the first blood test. Fingers crossed yours are the same. Delays are pants.

Glad you’ve got a thread with other mx ladies Lisa. Do you know how long you’ll be in hospital for?

Al x

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Great to hear that some of you ladies have had your last chemos, Im due my last on the 22 June & cant Bloody wait, even though I hate the way this last one has made me feel. At least there seems to be an end in site. I have had my rad planning come through for the 14 July & the last rad will be on 16 August, so Im hoping to get away to spend some time with my daughter who lives in Madrid sometime in september. The last 6 months have been hell, but things can only get better:). Good luck to everyone having treatment this week xx

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Morning All,

CrazyLesley- I’m really struggling with chemo no.5 too- I won’t be over this one before my last Tax on Tuesday at this rate. Are you having Tax too? everyone keeps saying ‘ONLY 1 more to go’ and I think ‘STILL 1 more to go’. I can’t wait either until this is over with and I get some energy back.

Al- Hope you’re not feeling too sicky today. Hopefully it will just be an overnight stay for my Mx. I go in at 7.30 and I’m first on the list.

Must get my bum out of bed. Housework beckons.

xxxxxxxxxx