chemo kicks off 20 May - any good buddies?

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821

Hi Lisa

Youve had a busy week maybe you should take time out for yourself and spoil yourself.

Lily Iam with you now your on same as me but since mine was delayed iam on what you would cal the first of six but think you got it lighlty i have 8 CMF altogether 4 double doses boo hoo so after tuesday I still have 5 to go.

Puppy slept through the night and cried to get out this morning so no mess to clean up thank god its like a sterile operating theater in here at the moment clean everything with bleach and disinfectant and wear sterile gloves when picking up after him and clean my hand with the stuff you use in hospital nice nurse gave me large bottle when I told her about the puppy. I feel bit better this morning and infection in line seems to have cleared changing dressing twice a day so I can keep it clean so hopefully it will be ok by wed.

Have a nice day all

Joanne

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Hey lily

was readin your comments on another thread and thank god you have itchy back I thought it was just me and Ive been running about like a mad woman de fleaing all my animals and blaming it on them they treated regularly but was getting paranoid thought it was soap powder as i change my bed everyday was washing them in just water to see if that helped.

God iam i relieved that its a side effect Ive starting knitting again after 10 years for the new arrivals so knitting needles have been coming in very handy.

Iam halfway through decorating daughters bedroom taking me almost a week to do one half wereas before could do it all in two days mabey iam getting fussier but do some and then lie down god do I want my life back getting sooooo p*ssed off with this.

Joanne

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Jonne,
one or both of us (most likely of the two due to derrrh chemo brains, one grey cell between us!) is totally confused, we seem to be at cross purposes. Sorry i don’t have an itchy back, where did you get that from? I can pretend if it makes you feel better! LOL.
Have you forgotten, we are on exactly the same arm of the same trial so we have exactly the same treatments and so does Julia (Carrieann) . Have you been on the vino? If so why didn’t you invite us?
We had 4 lots of epi, now we are on 4 lots of CMF and each is a double. We all get 4 double doses of CMF. I had number 3 out of 8 last Tuesday and get number 4 out of 8 this Tuesday, so you are just a week behind me. Julia is on exactly the same as me.
You are doing a lot more than me and I don’t have an infection ! Have a little chill and be nice to yourself.
Hope I have managed to explain above, I am with you on this for the long haul mate, right through to November!!
Hugs
Lily x

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Joanne,
I am now crying with laughter that I called you Jonne
Derrrrrrrh
LIly x x

825

hi gitls,

just a short note to thank you for the advice re the soup just feel too awful to actually make it but will really try as my blood count was 1.2,. I can’t type for too long as am experiencing stabbing pains under the surgery armpit that they think may be nerve pain or damage? due to the axillary clearance. i can’t even butter a piece of toast without being in pain aghhhh! so sorry lily to hear you have been in contact with the shingles virus hope to goodness it doesn’t manifest. Anyway love to you all and I am reading the posts even if I am not able to contribute much at present.

Bev x

826

hiya

Joanne - thanks for the email will chill tonight as at work at mo! Puppy sounds very well behaved - better than my 10 year old dog!!

Lily - good luck with no. 4 tomorrow - easily confused but is that you have way through your last set of stuff!!

xx

827

All I have to say today is hugs all round, this double dose thing sounds really cr*p. But they must be trialling it for a reason… maybe it’ll be worth it in the long run.

I have been getting post chemo fear… you know… what’s that bump, twitch and ache. I don’t need to explain to you ladies do I.

I reckon that it’s the F or C that makes you weepy, and weepy doesn’t really cut it. I’m starting to see light at the end of this but not so far away that i don’t recall how miserable I’ve felt, knowing it will pass doesn’t really help I know but I’ve been assured that it really does… promise.

Roll on Christmas eh?

Lots of love

Angie

828

Hi Everyone

Sorry for not keeping in touch, but things went from bad to worse since last writing on the thread. I have just spent a week in hospital trying to get my body back to normal. The tax really wiped me out… had a high temp of over 38, really bad pains in the legs and arms and not being able to eat because the mouth has been so sore. As soon as i did try to eat anything the food made my stomach really painful. Also having a runny bum did not help.Went for a check up at the Oncology unit where they did a blood test. My results were really low at 0.03 and they decided there and then to admit me. Was put on a drip and fed antobiotics. They injected my stomach with medication to get the white blood cells working, which thank god worked. I was a bit stubborn at first because i didn’t really want to go in, just wanted to go home back to my own bed. I put it down to not been able to think staright because i was so ill. The nurse said if we don’t admit you, you will end up on intensive care. That brought me back to reality and did as i was told.

Feeling alot better now. Still can’t eat properly, but managing to drink fruit juice. Was back at the hospital for a review on Thursday. they will still be keeping me on the Tax, but will be having an injection in the stomach the day after treatment. This will keep the white cells at a reasonable level to fight any infection. I am back at hospital on Thursday for the second cycle of Tax. Feeling really apprehensive about it, but if anything does happen again at least i will be ready.

Hope everyone is okay and goodluck to those who are going through more treatment this week.

Take care

Kirsty :slight_smile: xxx

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Yep, hugs all round for you trial ladies. No wonder you’re all out of sorts and losing counts with each other but sounds like you’re all pretty much at the same stage give or take a week or so with infections etc. I hope you can all keep going with this and not get too down about things - so much easier said than done I know. We’re still all here supporting you and feel free to moan about how rotten everything is, you know we know! (does that make sense?)
Lily - I hope the shingles ‘scare’ comes to nothing, don’t suppose you need anything else thrown at you at the moment. Did you have a good time yesterday? I hope it wasn’t too busy for you and you managed to get lots of help. Enjoy your cooked breakfast tomorrow - I guess it’s the only bit you will enjoy? I’ll look out for the water stuff on Friday when I have my CT scan. They wanted me in at 8.45 but I thought no way - I’ll be starving and won’t want to get up in the middle of the night to have something to keep me going. I’m now in about 10.15 (I think) so will get up early to have a cup of tea and breakfast. That’s another thing I hate about these scans, the 4 hours of no eating - normally over lunchtime! The other appts I’ve had have been at wrong times of the day as well so at least this one I can cope with. As to the veins, well, we’ll see, I’ll just have to warn them before so they can have a good look and get one of their expert vampires down to see me. Will find out next week how things are going and will keep you all posted. At the secondaries even tomorrow (if it’s not my onc) I will ask about leaving the lump to get a second opinion, if I get the chance. It may make me decide what to do but, as I’ve got spread already, I don’t think it means this will spread as well. I was also told at the beginning of all this cr@p that the ops etc done for primaries is to stop a recurrence whereas if it already has come back it’s the secondaries that get the treatment which treats all sites. May also post a new thread on here to see other opinions and views. My hand is still puffy but gradually going down and I’m hoping to get the antibiotics out of my system so everything starts settling down. I’m so glad I’ve not got another chemo round the corner as I wouldn’t have had a ‘good’ spell in between.
Kirsty - have just read your post. Poor you, you really have suffered haven’t you? I hope all goes well later this week and you don’t go so far down hill this time. I think my neuts must have got really low at times but luckily avoided a hospital visit. They only rallied to about 1.6 ish on day 21 so goodness knows what they would have been at the low point. I also had the WBC boosting injections so really hope they work for you. Take care and good luck this week.
Lisa - you sound like you’ve had a bad time of it as well, even without any chemo. I hope you’re getting everything sorted regarding the rest of your treatment but it’s no fun at all coping with all you have to at the moment. I can imagine the wedding was emotional for a lot of the guests (assume it was OH’s brother getting married?) and I hope you were able to get some support to help you with it. It really can’t have helped with all that BC throws at you as well as dealing with going to a wedding at the church that has so many memories for you. At least it’s one more hurdle you’ve dealt with and got out of the way. I hope you can concentrate on feeling better, physically and mentally, and look after yourself especially with rads around the corner. Do you know when you start and how many sessions you have? At 1st dx I had 25 sessions of ‘normal’ rads then 5 sessions of a booster which just targets the exact site of the tumour. You do get tired having them, especially if you have to drive a long way, but it is a lot easier than chemo.
Bev - sorry to hear your arm is so sore. Is there anything they can do to sort it out? I hope there is as it sounds really annoying and painful to say the least.

To all I’ve not mentioned, hope all is well with you and you’re all recovering well or keeping well between treatments.

Take care

Nicky xx

830

Hi all: Did my usual thing of doing long message and then losing it. How do I save it on here pls?

Angie: Great news about the wedding - had a neighbour who had fab cream lacy dress with red Doc Martens underneath - way to go. Did the soup thing this weekend - will see tomorrow if it did any good, saw the vampires this morning in Rugby - was greeted with “Oh its the lady with the lovely wigs”. Cheered me up.

Lily: I’m OK, bloods were v low last week as I said so we will see tomorrow. Can’t recommend chicken soup for breakfast though. Told myself it was medicine not food. Still got runny eyes and nose. However am getting hair - have dark shaddow all over and OH says there is quite a lot at the back. Hairs on legs going a treat - wouldn’t you know. Hope the shingles thing is not going to get you - you really don’t need anything else. Fingers crossed.

Haven’t done any rads planning yet - my onc wants to carry straight on as if it was No 9 of the chemo but some people do have a break of about a month. Anyone heard of that? Must say I would like a chance for my body to recover and the bloods levels to come back.

Lorraine: What a rotten shame about your shop. All the effort you put into starting it and now its gone. What are you going to do instead? Hope the lymphodeama is getting better - luckily haven’t had that (yet!) just some of the cording which I worked at and has gone away.

Kirsty: Poor you, how horrible. Hope you are feeling better now.

Lisaf: Know what you mean about the stats but as Angie said to me a a few days ago, they are based on other people’s experience not on you, read her post to me, it is very good.

Joanne: your puppy sounds lovely, someone came in my office this morning with 8 week old liver and white spaniel, Just wanted to take her home the dog not the visitor!!

Nicky: Wow, wish I could get my sorry ass into the mood for exercise, keep threatening to go but haven’t got there yet. Want to see golf pro to devise me a swing which will not hurt my right leg - I twisted it badly three weeks after op when I slipped on floor in M&S. Walking is OK but golf swing is hell. If it can’t be made to work will use clubs as plant stakes in garden!!

Well, anyone I have missed, hope it is going OK for you and your are coping with the horribles.

LOL

Julia

831

Thank you!

Lily: Good luck for tomorrow, will check back later in week.

832

Hi all

God its getting crowded in here takes an essay to get round everyone lol.

So ill cut it short.

lily Iam as confused as you lol yes were a week apart but my onc will likely cut the three weks between to 2 as he did before so will catch up will there be big parties on 25th on nov this years eh.

Lisa - I have a four year old dog as well who just wont do a thing shes told so iam making sure this one does teaching him to close the door now and hes doing well all i need to do now is teach him to make tea and iam sorted lol

Bev Id be lost without my toast so i can sypathise with you

Bev As the only one we have in common is the C it must be that its like PMT think its down to the menopause symtoms were suppose to get god help our other halves.

Nicky you sound as if your having a hard time hope everything works for you x

Carrie anne nice to meet you

think ive covered everyone if not HELLO NICE TO MEET YOU

Joanne

833

hiya, phew just leaving work and gonna chill tonight as worn out - went out with friends last night and could have slept all day today!!
Kirsty - hope the injections work - worked wonders for me!
xx

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hi everyone

Lily 2000

Sounds like your keeping positive, you certainly have your hubby worked out, youll have to give me lessons. A dishwasher in 1998 or was it 1988 i cant go right back and check. what have you done with all that time not spent washing up, ( or shouldnt i ask, maybe thats what got around your hubby). i think i’ll stick to the washing up its done in 5 minutes. i am sorry to give up shop, but i learnt a long time ago, you just have to accept what life throws at you., i will probably do some voluntary work first, to test how much energy i have. its hard to take on a responsible job until you know if your up to it. how much weight have you put on? i must have put about 20lb on , i cant seem to think about slimming, but i am trying to eat healthy. its difficult when you keep getting invited out for coffee. hard to resist a scone or slice of cake., feel like we deserve a treat.

Nicky 08

hope all goes well with scan this week. youll be fine with the drink, its just like water. hope everything else is ok

everyone take care. x

835

Hi,
how are you all? Everyone is very chatty at the moment, which is good news, lots to read and answer. The GP thinks my BIL probably has shingles but cannot be sure? Apparently it seems likely because the rash follows a narrow line along a nerve and it is blisters which pop and become red spots. I think he ought to be sent for a blood test, thats what always happens to me! So I am none the wiser but have had contact, now I have to just sit and see if anything happens. If it does I am in for quite a lot of treatment - woopee more tablets! I think I will quiz the onc unit doc tomorrow as GPs don’t seem to know much about cancer patients. No point worrying about something that may not happen, just hope I don’t get any odd symptoms this week or I will be paranoid! So heading into second half of the chemo tomorrow with unknown virus at large. I am going to laugh about this and hope giggling keeps it away and then boo my eyes out if it all goes wrong. Had my bloods taken by Frankenstein’s son this morning who kept wiggling the needle - why it hurts? Then had a lovely lunch with 3 local BC ladies and we all talked for England, actually I might have done more than my fair share - sorry ladies if you read this! We got on really well and will hopefully meet many more times.
Oh Bevy I am really sorry you are still struggling with your arm, you must have been really unlucky with where the nodes were. Have they said this will improve over time, I hope so. It must be so frustrating as well as painful for you. I am just wondering whether any of the alternative therapies like accupuncture would help with the nerve side of it. My cousin in law had it for a fractured vertebrae that was pressing on a nerve and said it really helped. You could start a new thread for advice from others who have had something similar, they might have good ideas or just reassurance. Good luck.
Lisa I had not realised the wedding was this last weekend, or I would have sent you a message. You did well to get through that and hope you managed to enjoy some parts of it too. What have they said they plan to do next? Is it rads first or surgery? You mentioned stats and I am really sorry that they were not as high as you wished but you just have to be on the right side of that fence, you don’t have to be the best jumper or the first one over. Try to lean it over to how many % are ok out of 100, so how many ‘chances’ you do have. They are just numbers and based on historic figures not 2008 ladies. Feeling for you and just moan to all of us and let it out. I am too scared to get my stats.
Angie, thanks for the support. Any news on your weding plans, which month? CMF is a quite old treatment that was very successful apparently. Not sure why they moved on, maybe because everyone got cheesed off with the doubles. The methotrexate is a sneeky little drug that cures lymph, bone and lung, etc cancer so no idea why that does not appear more often given BC goes off through the nodes. Its effects hit fast in 30 - 60 minutes but it is totally gone in 10 - 15 hours. By the way Joanne and Julia alcohol apparently can increase the adverse effects of it, so don’t have a drink straight after! I have the worst acid which hits every night, just popping for a ranitidine again! I hate that burn. Joanne just keep those happy thoughts coming. Julia hope your counts were ok for your dose tomorrow. how are you finding CMF compared to epi? This one just lingers for me and seems worse than the epi few rotten days and then better quickly after. My counts were 3.4 on this first dose and have progressively
dropped at least one point every time on CMF, so also heading for trouble before too long. Have you tried the manuka honey, I am thinking of getting some? They let me have a double dose of the folinic acid this time and although I only took 3 more it has made a big difference to my mouth.
Kirsty, I had a horrible feling that you wren’t well when you went quiet, oh poor you. I would have been so scared. Hope you are feeling much brighter. Your treatment has been a really scary one. Hope the injections will do a good job of supporting your immune system. I think you need to try to get food into you though to dampen it down as tax is a strong drug. Is that the drug they tell you to put dark nail varnish on to save the nails? If so get them painted before Thursday and wishing you a much better time for number 2. Nicky thanks for your thoughts and I think you ought to be heading for the big breakfast too. Now I sleep all through the chemo I miss lunch and feel ill so have to have something that lasts for quite a while to keep my tummy reasonably happy. Good luck with the scan and hope you get a good vampire, I got Frankenstein’s son! I think you would find a lot of experts to give you advice or opinions on a secondaries thread on this site. Some of them have had an amazing amount of treatment and are more knowledgeable than some of the docs. It certainly makes you realise that you would not necesarily get the same answer from 2 doctors or hospitals. Is yours a pretty high up unit or do you think you would benefit from a second opinion with another one? Have you had the maximum you can of FEC as it has been really good shrinking everything? Could it continue doing this? Just a thought, sorry you probably want to thump me for even saying that! I just sort of picked that up from some of the ladies talking about staying on certain types of drugs that seem to work on their tumours compared to others. Good luck with the next appointment and please let us know x
Anyone know what booster rads are and why and when you have them? I understand they are on the actual tumour site but that is all I know.
Hugs all round. Grrrrrrrrrrrrrrr back in tomorrow , still thinking of my bacon, egg and fried bread !
Lily x x

836

Hi lily

Your asking about booster rads i have 25 of all over rads ie breast neck under arm pit and shoulder as they think it has spread to other lymphs the booster ones which i get 4 of are at the site of the breast cancer so 29 in all. Going for my bloods today although they havent sent an appointment i will have to call to see what time iam suppose to be there typical cockup again.

catch you all later have a great day everyone

Joanne

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Hi all

Wow, this does get lengthy doesn’t it? But it’s nice to catch up. Will try to be quick!

Lily - thanks for your thoughts. I am confident with my unit but also know what a wealth of knowledge there is on here and I’ll use it to bounce some ideas around if needs be. I may get some info today on this Secondaries day I’m doing. I’ve maxed out on FEC (hooray) but also know there’s lots of other lovely chemo just waiting for me! I should respond very well to Letrozole (fingers crossed) so shrinkage should continue on that. In fact my onc initially recommended I started with Letrozole and no chemo as it does work well and I’ve read some very positive posts on here to that effect.
I had a rads booster and they used a different machine to the ‘normal’ one as it’s a very direct hit on the tumour site whereas the usual rads does the whole of the breast. You’ll see this as it does go a bit pink (if you’re lucky - if you’re not it’ll go very red) when you have the whole breast done. It’s no worse and if I can remember the treatment time was a bit quicker. Just be prepared for when the nurses all run out of the room and leave you to fry on your own - very disconcerting.
Julia - when you do a long post ‘copy’ it (as in ‘copy and paste’), click on the Add your comments box and it will either post or tell you you’re not logged. If you get the ‘not logged on’ message log on as usual, go to this thread and ‘paste’ your comments back into the box, you shouldn’t lose a thing if you’ve copied it all before. This is due to your computer timing out of your internet link if you’ve not posted or actively accessed this site for a period of time eg 10 mins or whatever your pc is set up for. Hope this helps.

Keeping it short and sweet I hope today goes well for Lily, Joanne and Julia - if I’ve got that right? To everyone else - chin up and hope you are enjoying yourselves.

Nicky xx

ps legs - hmmm, why do they grow back so soon? Not impressed. Head - where are you hair? I’ll welcome you back with open arms, please come back :wink:

838

hiya
Start my rads tomorrow! Did talk in onc’s report about probable other nodal spread and that would get rads to the drainage areas - only having 15 (only I say) but worried why Im not getting the booster ones! Op to take ovaries out is going to be a couple weeks after, panic stricken already but you no me, god knows how will knock me out as no veins left, couldnt get blood the other day!

Hope everyone bearing up and goes well for everyone today. Hair still just stubble so ratty still here and will prob just be packed away when done! god hope rads dont actually hurt, worried I’ll jump and they will miss the spot!!!
xxxx

839

I’m sure I posted, odd didn’t notice it go missing this time…

anyway hope you’re all doing OK today and Lisa If you’re taking the A66/M6 I can tell you a much nicer and less stressful sneak way up to Carlisle. It’s affectionately known as the rads road because a friend in the village worked it out for when she had her 15 days of rads. I’ve been using it for chemo and can show you on google maps. It’s worth printing and taking or are you going to go the up and over way (wigton etc) instead?

Anyway hope everyones OK. Im fighting the side effects like mad today everything aches including my head, ulcers, sore mouth the lot but hey how last bl**dy time.

So those of you on the TACT cmf arm I figure after todays dose you’re half way through the cmf right? Hopefully it’ll get easier from here.

Lots of love, I think I may have to take something for this headache but we’re not allowed paracetemol right? Maybe a sleep will help… never going to get any work done like this!

840

hiya Angie

Sadly with me heading from Workington at work i’ll be heading the boring normal way or working at Carlisle - no fun eh! Are you on tax, if you are you can take paracetomal cant you as long as its not when you have a temp?!? Good news about the wedding - good luck

x