Jackie really glad you are home. I’m sure now that you are back home in your familiar surroundings you will start to feel better and regain some energy - I think being in hospital just drains you. Rest lots and make your hubby bring you lots of cups of tea and nice snacks. 6 weeks will pass - you are so near the end. Sending you strength and hugs
Egg x
Good Morning…I’d love to join this thread if you don’t mind. I’m 35yrs old with 2 little boys. Currently dealing with a recurrence of breast cancer. I had a double mastectomy 3 years which was misdiagnosed as DCIS at the time. Now they realise they missed an invasive element. Anyway, I began chemo in January FEC-T and had my 5th round yesterday (2nd dose of Tax). 1 to go! Then surgery for node clearance.the first round of Tax was brutal!!! Indescribable bone pain. I haven’t had an opportunity to fully read all of your comments yet, but I wonder if anyone else has had Tax and found the bone pain eased the second time or got worse??
I’ll be injecting this afternoon and then it’ll all kick off ?. Thanks for reading and lots of love to you all. Alison x
I know exactly what you mean with the first T. It was evil. I’m pleased to say I had my second dose last Friday and it’s been a doddle in comparison. Pain not nearly as bad. I insisted on stronger painkillers but I’ve only needed them for a few days. Worst thing has been the fatigue but after the pain of the first double dose I’ll take that!
Hello Alison. Welcome to the thread. You will find we are a very supportive bunch. I get all my tips, advice and emotional support on here.
Sorry to hear you have had a recurrence. Mine too was a recurrence. I had dcis diagnosed ten years ago and a mastectomy with reconstruction. I didn’t have chemo last time. I’m sorry to hear you suffered with the first dose of T but hopefully you can take comfort from Scotty s words and let’s hope it’s not as bad this time. It sounds like you and I will be finishing together as I too have had my second Tax. One more to go! R x
Sorry to hear you’re having a rough time Jackie. It’s a huge thing that you’re going through and you’ve had some particularly tough SEs (to put it mildly!). It’s ok to feel down and lose some of your fighting spirit - on a long and seemingly never ending road which keeps throwing you curve balls. Just remember that we’re all here for you - any time you need us. You’re doing so well - even if it doesn’t feel like it. As the others have said, you’ve been an amazing support and encouragement to the rest of us and have given us all so much inspiration. My BCN told me it is not uncommon for patients to start to feel down and experience some depression towards the end of treatment. Like the adrenaline is starting to wear off as we crash. Sending you a big virtual hug!
Alison - welcome!! Sorry to hear T1 was so hard. I’m fortunate to be having weekly paclitaxel which seems so much kinder compared with the SEs you have all been experiencing. Is it possible to switch if it gets too bad? My BCN described taxotare as just plain nasty ?
I’m sat here now on my drip getting T2 (wk 1 of 3). Starting to drift off from the piriton.
Lots of love to you all xxx
Welcome Alison.
I am day 2 after Tax 2, steroid buzz wearing off and getting fuzzy mouth and ( so far just the 1) peeling hand. BCN gave me cream called Pliazon. Hang in there Jackie.
X
Sorry for not posting for a while Tax Troops - I’m still having radiotherapy (17/23 today) and it takes a lot out of your day, particularly when they are running very late.
Jackie - glad you are back at home now, and hope it doesn’t happen again. It’s true what WTP says, just when you are getting towards the end and people think you should be happy about that, it can be a bit of an anticlimax. It’s probably because at this point we are starting to try and make sense of it all and thinking about what’s next, instead of just focusing on getting through the last chemo. The fatigue is also starting to creep up on you. So it’s not unusual to feel miserable sometimes when you get to this stage. Particularly if you have been in and out of hospital.
Alison - I started my chemotherapy last September and finished in December (3 FEC and 3 Tax with Herceptin and Perjeta). You’ve already had three FEC and one and a bit Tax, so you seem to be doing well! The first Tax is often tough, partly because you don’t know what to expect if you haven’t had it before. The pains tend to be worse with Tax than with FEC. I hope they aren’t as bad this time. I wasn’t badly affected by them, but there is one tip I can share which was told to me by the nurses. If the pains haven’t started yet, try taking painkillers now before they start, as it is more effective at controlling the pain than if you take them after it starts. All the best with the rest of your cycle.
I just LOVE all of you girls.
Your uplifting messages have helped me feel a lot better.
I don’t think I could feel more supported, and I read out each of your words to OH. He thinks you’re all very special.
Ebim - I am SO sorry you felt so rough after Tax 1. But grateful that you sent the pains packing. You will grow to love Homes Under The Hammer - it seems to be staple fayre for Tax Warriors. I’ve been on the floor with exhaustion all through Tax - I think it hits some harder than others. All I can say is keep doing what you are doing - REST - then rest some more.
Wtp - thanks for sharing your BCN’s words. I think that’s what it is…crashing after getting so close to the end.
Sgt Old Dawn - nice to have you back. The daily commute for radiotherapy must be exhausting.
Alison - so glad you have joined us. We are a super special band of Tax warriors (or teddies).
We love and support each other when times get rough. It is young women like you who grab my heartstrings. I’m old (65) and have done well to dodge the cancer bullet for as long as I did, but lovely young women like you don’t expect nor deserve this vile disease, especially not once but twice.
Please keep posting - about anything and everything.
Tax 5 is due tomorrow, but after the fiasco of the last 3 weeks my internal medicine specialist says it should be delayed for a week to let my body regroup. My oncologist, will, I know differ. She said she would go head to head with him. I think I’m just afraid I will end up with 3 non standard holes in my bum . :smileysurprised:
We shall see.
Ebim - this is especially for you.
Wow, thank you so much for taking the time to reply to me and sending advice and good wishes.
I injected this afternoon and am just waiting now…?. I’m hopefully the bone pain won’t be as intense this round. But the fatigue and sheer incredible weakness will likely be the same if not worse as my haemoglobin is 100 which is on the brink of too low I believe. A transfusion has been mentioned before round 6. I always get so down and emotional when I’m so weak as I can’t help my two boys or play with them when they ask. I hate them seeing me like that. And of course it’s the Easter holidays now in scotland…so timing is poor! Lol.
Thank you all so much. I wish you all better and brighter days xxx
Alison x
Welcome Alison. I’m 4 days post tax 2. I too suffered terribly with joint/bone pain 1st time round and was dreading the 2nd round. I have been achy today so immediately got on regular pain killers ibuprofen and co codamol. So hope this will keep the pain monkeys away!
I have also found my mood slipping this last week, I seem to be troubled my the demon thoughts a bit at the moment.
Jackie - nice quote.
Xx
Jackie you are not old! When I had my radiotherapy meeting on Monday the registrar told me I would be having an extra week of rads because I am ‘young’.
I am, wait for it, 58!!!
I thought it’s almost worth having to do an extra week of rads to be told I’m young! Great to hear from you today Jackie and I’m glad you’re sounding more upbeat.
Alison, it must be tough trying to cope with tiredness and your two little boys. Accept all the offers of help you get, and ask for help too. Your boys will understand.
Great to hear from all the tax warrior teddies today. Sending hugs to all. R x
Evening everyone,
Welcome Alison, thanks for joining in our group. When you say you are injecting - what is that with? Do you still have GCSF jabs with T or are you self administering T?
Jackie- glad to hear you are home. I think we all know that low moment when you feel like you are just curled up in a ball in a corner and being kicked relentlessly by this thing. We know we don’t have a choice or control over much of it but we do know we will get up again because we have found an inner strength and you have certainly shown that often.
I am booked in for T1 next Monday as my scan results were fine. After a 2 week delay I am beginning to get used to it which is not helpful really. It sounds like this next bit is going to be as much a mental slog as physical from all your feedback.
Having not had chemo for nearly 5 weeks now though, my hair is definitely growing - OH just laughs when I show him my new sprouts, presumably it will fall out again but it’s a positive sign of how swift renewal could be once we get past this.
Mooney - how are you? You have been quiet.
Beedot xx
Good to hear scan results were fine Beedot. How is your arm doing? My other arm has now started to ache and hurt (had fec 3 and 4 into it) so have been rubbing on hirudoid gel like crazy. I will be joining you next week for T1 on Thursday. They have told me it will be an all day affair whilst they monitor me. I also have to go on Wednesday to have herceptin and perjeta - again all day! Not looking forward to 2 long days in hospital, particularly when it is school holidays.
Alison - like you I have 2 young boys so I feel bad about the times I can’t do things with them. Trying to make the most of the nice weather these last few days and my last bits of energy to take them out!
Hope you are all gearing up for a restful weekend.
Egg x
Morning girls…
Beedot, I can’t remember what the injection is called now and I binned the box after I administered. It’s a potion to help keep my white blood count up as Tax really hammers the WBC I think. It’s one injection into my stomach 24hrs after chemo.but it has its own side effects too!..very Flu like restless limbs. This is before the bone pain from the chemo starts.
Also, you may find your hair continues to grow as my head is definitely becoming fluffy after 2 Tax’s! My 4 year old son rubs my bald head but calls me a fluffy bunny now! Lol.
Jackie I love that quote. How true.x
Alison xx
Glad to hear your scan was fine beedot.
Good morning! And welcome to the group Alison. I also have young boys and feel like I’m not doing my mum job very well at the moment. They know i have good weeks and we make plans for them and I have given them dates in the future to look forward to - amongst them a ‘lads night in’ with their dad when I go in for surgery (I’m chemo first) and on 16th December, me and my 10 year old are going to have a fight!!! Not as mad as it might sound, but it’s really a date in time where I think I’ll be stronger post surgery and rads, where he can start being rough with me again and ‘mum is no longer delicate’!!! And he reminds me of the date and the consequences often so is clearly looking forward to it!
So, I’ve had EC 1. My arm is aching, so am thinking about a PICC after all, even though it may only be for one or two more treatments. I’m feeling OK, but on steroids still. A question though, is it like Tax where the SE come in later, maybe post steroids, or am I likely to be OK, day 2 and feeling not so bad?
Also… Constipation! I took wtps advice and got something for that - I started laxido the day of treatment. I’ve very little to show for it so far though if you know what I mean?!! Should I ask for something else too, and for those who suffered, how long does the constipation last post treatment?
Beedot, it might be worth trying the cold cap again when you go for tax 1, to protect your new growth…?
That’s funny Blue2, if you saw how much hair I have! It’s not growing evenly either, I don’t know whether to shave it off until it does or let bits grow and rearrange them later. Signing up for a fight with a 10 year old sounds brave! I think you’re going to need some Queensberry rules there.
Alison - oh yes, the white cell jab. Earlier in the thread we discussed the idea that taking antihistamines is reported to ease the bone pains from that for some reason (Loratadine which is also the non- drowsy one). My red cell count is also dropping like yours.
Egg - my arm is doing well. I had an ultrasound on it to make sure the SVT (ie superficial) hadn’t turned in to DVT but it was fine. I can only use the one arm as I am post surgery so it is taking a bit of a bashing but I am still holding out on the PICC/port but for how much longer I don’t know. I was googling ways to deal with it the arm and I came across a study using cold pressed sesame oil massaged in twice a day, to try and prevent it happening, so I bought some but I think the hirudoid cream is the answer once you have it.
Hi Blue - I had THE most awful constipation on EC. It’s the ondansetron antiemetics apparently. First cycle ended up with a tear which was agony. Eventually what helped was taking Docusate three times a day which kept things soft at least, (sorrry if too much info!) and then papaya every morning and lots of prunes!! I also used bisacodyl once but it did absolutely nothing. Also lots and lots of fluids. It settled about a week into the cycle.
With EC my worst days were definitely the first 3-5 then improved once off steroids, as had heartburn and nausea with them.
It seems like T gives you the opposite of constipation so I guess I can shelve all my laxatives for the next few months! ?
Thanks Egg.
So I might not be out of the woods yet… They did warn me that I might feel worse when the steroids stop, but fingers crossed it’s not that bad!
I’ll get some prunes! I’d not thought of that. Yes, on Tax, diarrhoea is a side effect, and unfortunately for me, it was explosive and resulted in piles!!! Just warning you so you can be mindful of your existing EC related problems.
Fun and games eh?! Not!
X