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May 2017 chemo starters

Wandestrong
Member

Re: May 2017 chemo starters

Thank you feelthefear, that is very reassuring. The oncologist said the same thing about the common nature of liver cysts and did say they try not to scan most people due to this. I just had a bit of a wobble yesterday, even found myself wandering to the secondaries thread as I was convinced it was more sinister than they let on. I've woken up this morning feeling much better and ready to tackle the next Chemo on Friday.

Thanks all!
Trisha69
Member

Re: May 2017 chemo starters

Morning Raichir,

Done my first 3 FEC,  next is 3 Docetaxal/Herceptin.  Half way thru 🙂

Trying not to think beyond that, my lump is 38mm.  (Or was) Dont know if be lumpectomy or mastectomy, hard to think about.  Coped well with the hair loss, the mouth ulcers horrid on no 2, so far on no 3 not too bad.  The constipation horrid too.

Very muggy here in Devon and appt to clean PICC line at 9am.  Have a good day! 

 

feelthefear
Member

Re: May 2017 chemo starters

Hi mai and wande.
Just popping in from July starters to comment on the ct scan thing. Mine found a small nodule on my lung and two cysts on my liver. They classed my scan as clear and said these blips are very common. If they scanned a street of people around 70% would have lumps and bumps. Apparently lesions, nodules on lungs are very common and are usually from a past illness (chest infection etc) and liver blips also very common and could be there from birth. My bc nurse says they know exactly what they're looking for regarding mets and can easily differentiate hot spots from harmless. They have to do a follow up scan just to cover their backs from the teeny teeny possibility that these could be something sinister.
Our brains are currently in overdrive though so it's easy to wander off into the 'has it spread zone'. I scoured these forums and other sites for people who had also had things like these show up on initial ct scans and none of them went onto develop mets.
X
Raitchr
Member

Re: May 2017 chemo starters

Hi Lindyloo. If you read through our treads from the start you will see all the various side effects and how we have dealt with them. After my first FEC I had bad side effects but then learnt how to deal with them ready for 2nd. I did take time out from all forums as I had difficulty in coping mentally with what I was going through but now I am half way through chemo I am in a better place in my mind. I just felt it was a big mountain to climb but now getting there. The main s/e I had was  constipation, furry mouth and fighting sleep on steroids, all manageable now. I swear by Manuka honey, grade 15 or higher for mouth, expensive I know but as I am not paying to get my hair done every 6 weeks I see it as a treat. Also Idonthave a wig, I have chemo caps for when I go out and don't bother at home. Family and neighbours have got used to it.

 

Best wishes everyone, blood test for me today before chemo 4 and 1st T on Thursday.

 

Heather

treehouse
Member

Re: May 2017 chemo starters

Hi lindyloo
I am on a different Chemo to you and everyone else so my side effects are not quite the same. I have steroids for 3 days (day before,during and after treatment) they give me a buzz and I feel in a protective bubble, loads of energy but can't sleep. Day after treatment I start 7 days of injections which I do myself into my tummy. Unfortunately by day 4 the steroids run out, the exhaustion and injections kick in and I go down hill. This has been to different degrees each cycle . No 2 was great and I think it was because it was at half term so everyone was home and I was distracted and pampered 😀
I would be really interested to hear your experience of surgery. Now I know my genetic status I really want double mastectomy. How was prep, how long were you in hospital? How was recovery? Any advice?
Good luck with Chemo. We are all here for you. Share with friends and family. You will be amazed by how many people are willing to help, let them 😁👍
Anniej
Community Champion

Re: May 2017 chemo starters

Hi Lindyloo, welcome to the club. 💋  The only thing you can be certain of with se of chemo is that everyone is very very different . You may sail through - or not! The medical team will help you along and give you any necessary drugs. Yes, plenty of water to keep the veins plump and hydrated to take the chemo and flush the system . I got my wig on first visit to Onco so was well prepared for hair falling out. Still a horrible experience , but my wig is very smart and natural looking. I listen to my body and do lots of 'nesting' when I have chemo fuzziness. Gone pescatarian due to Oestrogen +ve nature of my tumour. Swapped foods - almond milk and yoghurts, organic vegetables. I have felt very good on the healthier diet and shall continue with it. Seems to help re mood swings as I haven't really had any. The July group has started and you may want to join it? X

treehouse
Member

Re: May 2017 chemo starters

Once again I count the silver linings. Spent the evening treating small boy for head lice and the rest of family as a precaution. No need for Me due to lack of habitat!!
Lol 😂 👾👿👹💇
Mishy18
Member

Re: May 2017 chemo starters

That's kind of what happened to me originally biopsy showed very small tumor early stage with no lymph post surgery showed bigger tumor with are of high grade Dcis sometime vessel transfer and a macromestases in node 19mm! Plus Triple Negative so yeah chemo! Had first one today don't feel too bad, had the cold cap and it wasn't bad at all so you could try it if you're worried about your hair, everything they do is in you best interest so think positive I know I have been xxx
busybeeS
Member

Re: May 2017 chemo starters

Hi WolfEE, I had WLE before chemo. I've been told that I'll start tamoxifen 2 weeks after chemo, radiotherapy will be 3-4 weeks after chemo finishes. So jump straight from one to the next.

Hi Lindiloo, we've all had very different experiences of SEs of chemo. I've had minimal so far, have a furry mouth at about 4-5 days, so just brush teeth after meals to try to prevent ulcers - ask chemo dept for treatment just in case. Constipation is the other big thing for me, so I take senokot to prevent it for the 1st few weeks after treatment. I also make sure I drink 2 litres of squash/fluids a day.

Hopefully you'll manage the side effects ok. Just don't let them build up, the earlier you deal with them the better/easier it will be.
Lindyloo
Member

Re: May 2017 chemo starters

Hi

i had wide excision lumpectomy and bilateral therapeutic mammoplasty 6 weeks ago. I am due to start chemo with FEC-T on the 19th July. They have told me I will lose my hair within the first 2 weeks of starting treatment and that I should get a wig straight away. To say I am apprehensive about the chemo is an understatement but I know it's something I have to do. I think I'm finding it difficult to come to terms with as before surgery I was told that the tumour measured 9mm and it was in the very early stages, but when I went back for my results I was told that it measured 62mm and was found in 2 lymph nodes and that I would now need chemo as well as radiotherapy. It would be great to hear how others manage the symptoms of any side effects.

Mai7
Community Champion

Re: May 2017 chemo starters

WolfEE, yes, Dozytaxhell next Thursday!  I'm ER+ but no mention of hormone receptor inhibitors or ovaries  yet. I don't ask too many questions yet as I have 4 round of Docetaxol to go.

WolfEE
Member

Re: May 2017 chemo starters

Oh no, thanks for the warning re: Docetaxol. Maybe I'll try and speak with someone prior and see if anything can help with the depression as se?

May7 do you start Docetaxol next week?

Also any ER+ ladies have you started hormone treatment yet the tamoxifen or similar? I was just wondering if when this generally happens if after chemo or after surgery and rads etc etc? I know I shouldn't be thinking ahead (oncologist told me only think about the task in hand so for now the chemo)

Xx
Mai7
Community Champion

Re: May 2017 chemo starters

WolfEE, glad your low is less low than yesterday, I think acknowledging and accepting that you are low is a good thing as it means you have perspective on it so well done for remaining self aware. 🤘🏼 Apparently the Docetaxol can cause depression, so forewarned is forarmed. No wonder Treehouse keeps feeling marshmallowy!

 

Wandestrong, I had a similar situation after my CT scan. They found an abnormal cluster of blood vessels on my liver and decided (after a few days of nail-biting anxiety on my part) it was a hemangeoma. However, part of me fears they made a mistake and it's really a new blood supply being set up for a new tumour. It's hard to not think like this, I mean if your body has let you down once and you had no control, then why not again?  I've just decided to trust what they say and reman hopeful that it is exactly what they confirm, a hemangeoma.  Try and stay positive and focus on looking after you and your babies. Happy thoughts are healthy thoughts.

Wandestrong
Member

Re: May 2017 chemo starters

Afternoon all,

 

Hope everyone is doing well (or better should I say). I had a follow up with my oncologist after a CT scan last month. I really don't know what to make of it. He mentioned the scan showed a small lesion in my liver, however he didn't seemed concerned at all. They discussed in their MDT and said it looked like a cyst and not related to cancer. I'm trying to not worry about it, but the mind does drift to the worst case scenario. He said we'll re-scan in 6 months time to see if its still there or has changed in any way. The rational part of me knows I need to trust that the judgement of the medical team, however it's hard not to worry.

 

I'm trying to remain positive through the rest of Chemo. I have the 3rd FEC on Friday (officially halfway through). 

 

Wande

katie11
Member

Re: May 2017 chemo starters

Glad your on the up wolfee. Those steriods are the worst! I know they do a job but the come down is horrible. It's quite difficult to establish what is a chemo se effect or steriods / injection. Xx
WolfEE
Member

Re: May 2017 chemo starters

Hi treehouse, oh no dreaded steroid time just the word steroid now makes me feel anxious I think I have developed a massive complex and maybe making the issue worse for myself but I can honestly say the come down I have off them a few days after finishing them is absolutely the worst feeling I have ever experienced.
Today thankfully although my mood is low it's better than it was it's definitely starting 2 lift so does prove again that it does pass but I'm so fearful of it now that I start panicking and dreading before it happens and therefore possibly making it worse???? Not sure.
Hope your blood tests have gone alright today ready for tomorrow.
Keep your chin up try and stay positive (hahaha says doom and gloom emma (wolfEE) don't let the little steroids win - we tell ourselves they are our friend they make us strong!!!! Xxx

How lovely to hear from you Heather and know your managing and ploughing through this xxxx

Rosie65 Olympic stadium sounded like a nice distraction i bet it was nice getting out doing something new. My friend has asked me to pick a national trust castle that we can go together and visit I might pull up the laptop now and take a look.

Mai7 - Bristol 😂 Home sweet home. 👍

Lastly thank you all of you for the little words of encouragement the last couple of days. I can admit I was feeling very very low and all your little comments did help - thank you xxxx ❤️
Mai7
Community Champion

Re: May 2017 chemo starters

Bristol must be very proud to be associated with the full poop spectrum.  💩#Bristol🌈

 

im feeling good today except for sore bum and mouth. My tongue has white lumps down both sides like ulcers. My temerature is normal.  I've reached a point where I don't know whether to worry or not because sore mouth and bum can be a sign of neutropenia but also might not be.

 

hope everyone is coping alright

treehouse
Member

Re: May 2017 chemo starters

Thanks Rosie.
Well the steroids are working their magic......i have been in a cleaning whirl wind .
Wish I had this energy and motivation the other 20days of the cycle. Lol 😂
Rosie65
Member

Re: May 2017 chemo starters

Hi ladies, what a weekend for everyone, hope things are starting to improve today - onwards and upwards hopefully.

 

Good luck with blood test today treehouse, have got mine today as well so hoping and praying that RBC has increased. Had a lovely day at the Olympic Stadium yesterday watching the athletics, it was so nice to do something different, but hoping I haven't overdone it. 

 

Mai - glad to hear your home, Bristol stool chart ha ha the things you learn on this journey!

 

WolfEE - hope things are looking a bit brighter today xx

busybeeS
Member

Re: May 2017 chemo starters

Hi Heather/raitchr. Nice to hear from you. Glad you're doing well. Hope the time out was positive. Fingers crossed that your next stage goes as well as you found FEC. ....And you have a holiday to look forward to now and focus on.

Good luck to everyone on treatment this week.
treehouse
Member

Re: May 2017 chemo starters

How you doing today Wolfee?
I am feeling wobbly, Back on the steroids today.....lets hope I actually need them for tomorrow. Will the steroids chase the marshmallow away? 😢
treehouse
Member

Re: May 2017 chemo starters

Hi Heather good to hear from you again. I have been on docetaxel from the start but also have 3 other drugs with it. So my side effects may not be the same. Biggest difference I can see is you guys get constipation whereas I get the opposite.
Hope you are ok Trish, you sound busy. I have my second heart scan next week to check if Herceptin is doing any damage. I am a little nervous about that .
I have another blood test today to see if my rbc and platelets have picked up over the weekend and if I can have round 4 tomorrow.
Mai glad you have recovered enough to be released. Bristol must be so proud to have a chart named after it 😂 x
Good luck today ladies. X
feelthefear
Member

Re: May 2017 chemo starters

Thanks for all of the tips Heather.
Roll on next month when you're at the end of this. It seems a lifetime ago that we were first diagnosed. Great that you can go on holiday. I'll keep checking in to see how you do on the T.
I'm on day 7 of first fec and apart from the first three days of feeling wired with little sleep and constipation, I think I've been extremely lucky so far. No other side effects, no sickness, dry/sore mouth etc.
I'm just really hoping round two goes as well.
I had IBS before all of this started so I'm used to the constipation and runs.
We move house on Friday so I'm keeping myself busy packing. I think it's helped to have something positive to focus on.
We won't even have a kitchen for a few months as we're awaiting planning permission for an extension. That should be fun given the list of foods when can't eat and the takeaways we're not supposed to have. X
Trisha69
Member

Re: May 2017 chemo starters

Hi Mai, I know what u mean about feeling safer in hospital 😞

 

I start Docetaxal and Herceptin 28th July.  Busy week that week.  On the Tuesday the 'Make over' 🙂

Thursday have to have heart scan 830am  (Will have to leave home by 7am)  then Oncolgist at 2pm (Will be more like 3pm) Will try get my free massage inbetween and maybe have a crappy Burger from McDonalds in Exeter and window shop!  No point drivng home, that would be 120 mile round trip.

Then no 4 on the Friday at 10am.  They have said will be there 6-8 hours so can monitor any side effects.  Am feeling quite scared and exhausted already at the prospect of 2 long days.

However on my FEC no 3 I took headphones and my tablet and fell asleep, so fingers crossed.  Let me know how u get on x

Mai7
Community Champion

Re: May 2017 chemo starters

Hi Raitchr, good to hear from you and glad you are doing as well as any of us! I think we are all getting a bit tired of the chemo and all the crapitudiness that goes with it and pushing past the half way hump psychologically.  I've had my worst week yet - in hospital with neutropenia and whilst it's really nice to be home, you start to feel safer in hospital.  I think you're the first for Docetaxol although Katie has started on another taxol recently. My first Docetaxol is due a week on Thursday.

Raitchr
Member

Re: May 2017 chemo starters

Haven't managed to read through all the posts yet, just wondered who had started T and any advice on side effects?

 

H

Raitchr
Member

Re: May 2017 chemo starters

Still have 21 day course of antibiotics each cycle which is keeping bugs at bay so far.

 

Hair is buzz cut .5 grade and I love it being short as so cool in this hot weather. I cried when I 1st went to school to pick up as everyone stared at me but ok now. I have a few strands of longer hair which seems to be growing but nothing major.Leg hair is growing slowly, gets a shave once a week but none else where.

 

H

 

 

katie11
Member

Re: May 2017 chemo starters

Glad your home mai. Bet you're glad you didn't need the paper knickers! !! Xx
katie11
Member

Re: May 2017 chemo starters

Lovely to hear from your Heather , glad you have been doing well xx
Raitchr
Member

Re: May 2017 chemo starters

Constipation in my 1st chemo was horrible and made me feel so poorly. Drink lots of water and take more Movicol if needed, I was told to take 2 in the morning and 2 at night to get things going but ended up with bad tummy pains through the night and having to sit on the toilet in the night for ages. Hope you are better soon and things get moving.

Trisha69
Member

Re: May 2017 chemo starters

Thanks will get tomorrow. Just been sobbing had get partner (he came back) to put a suppostrie in, I feel so embarassed and horrid.
Raitchr
Member

Re: May 2017 chemo starters

Hi Angela, I have coped ok on FEC, learnt how to prepare for side effects after first one. Struggled with nausea on 2nd one, but changed routine at home got rid of anything in fridge that smelled and pre cooked food and froze 3 days of meals so no food prep of raw meat. 

 

Can recommend the following, manuka honey 1 teaspoon twice a day, Coke or fizzy water for mouth day 4 and 5, Movicolo sachet once a day plus dioctyl tablets twice a day for constipation from day 1 to 5. Sleeping is rubbish on steroids so I nap in the day too. Was evermore tired on 3rd fec but had sore throat and low neutrophils prior to chemo. Ice cream and ice lollies help mouth day 4&5.

 

Oncologist said side effects will be different on T but apart from saying nausea would be less or not at all he didn't say much. Bone pain manage with paracetamol or co-codimol but I still have tramadol and liquid morphine so will ask if I can use them.

 

Oncologist said I can book holiday for Oct half term as finish T 25 Aug and should be ok to travel, not needs rads so I will be done on this journey. 

 

Heather

Raitchr
Member

Re: May 2017 chemo starters

Movicol or Laxido is better if diluted in squash in a small glass, I just drink it really fast in one go. I got other tablets from oncologist to take as well.

feelthefear
Member

Re: May 2017 chemo starters

Hi Heather. It's good to hear from you. I was wondering where you'd gone. Nearly sent you a private message but had a feeling you'd just taken some time out.
How are you coping?
I had my first fec last Tuesday. I'm doing well. 🤞🤞
Not too many side effects and I'm feeling my usual self now.
Angela. Xxx
Trisha69
Member

Re: May 2017 chemo starters

Hi Mai, the FIrbrogel is like a drink?  Made me gag.  Is Movicol the same? Trisha

Raitchr
Member

Re: May 2017 chemo starters

Hi everyone. I haven't been on here for awhile, needed timeout to get my head around chemo and all that it gives to you. It just became too much for me. Anyway 3rd FEC done and onto T on Thursday. Slightly nervous but bring it on and get it done. Hope you are all doing ok, I will read through the earlier posts and catch up. I am still on 21 days antibiotics each cycle and apart from neutrophils being low on last chemo I am staying well. 

 

Heather

Mai7
Community Champion

Re: May 2017 chemo starters

I'm home again and it feels good! 🏠 🎉  It's so nice to be away from the hospital environment although the solitary confinement was a good opportunity for a readathon!

 

Trisha, do you have Movicol? (it's a prescription med) It's a stool softener so makes it less painful to go. You can get dulcoease stool softener from Boots which does pretty much the same thing. If you need more fibre then Fibogel is good.  Also dried apricots if you don't like prunes.  I just got some germaloids on the way home and it's really good for numbing the area to ease the pain.

Trisha69
Member

Re: May 2017 chemo starters

Good to hear you be home soon!!

 

Im home alone, had a sleep and woke up in a foul mood, ripped partners head off!  Think the heat,t iredness and all the rubbish he watches on my TV  tipped me over the edge.  That and the  constipation! 

On 3 Docusate twice a day and 2 Senna tabs (Herbal that hopsotal gave me) twice a day.  Not working 😞  Any tips?  Dont like prunes etc

MJK
Member

Re: May 2017 chemo starters

Mai7, great to hear you're going home although you might want to wait until they've let you out before shouting 'silly sausage' 😉 Big hugs WolfEE and allow yourself to not feel ok at the moment. Treehouse, hope you sorted out the 💩 but lousy that you have to. 😝
Mai7
Community Champion

Re: May 2017 chemo starters

Good news - my neutrophils are back to just over 1 and I'm a 5 on the Bristol stool chart so they want me to stay for one more antibiotic drip feed and then I can be discharged as long as I am very sensible and come straight back if I deteriorate at all. I should be slowly on the up now as its day 10. I am free to select my own underwear and am no longer destined for paper pants! Hooray! 👙

 

Wolfee, the bad days are tough but they don't last so just allow yourself to have a poop day and rest and focus on a brighter tomorrow.  You could try shouting "silly sausage" at the top of your voice. No one can stay angry after shouting "silly sausage" 🌭

 

Misyangel, hope you enjoy your look good feel good session

 

Treehouse, what the poo! 💩😷

misyangel
Member

Re: May 2017 chemo starters

Wolfee sending big hugs to you and I am sure its the chemo and all the medication which can make you feel like that as I have days after chemo where I feel very negative and down.  I have a good cry to get it all  out my system. Just look how far you have come you have now finished the FEC no more nasty red stuff.

Hope you hand gets better

 

I am booked on the Look Good Feel Good workshop on Tuesday and me mum is taking me to a place called Oatcakes and Milkshakes after, the milkshakes are amazing, then providing bloods are ok have my final FEC on friday. Heart

treehouse
Member

Re: May 2017 chemo starters

It's ok to feel down wolfee. Let us help pick you up.
This is a battle we can not be expected to fight on our own. I too have down days but my kids don't let me stay there for long. There issues are so much bigger than mine...mum the x box isn't working!..

Everyone has just left the house and I have just found the toilet 🚽 is broken and someone has left a deposit 💩 that didn't flush. I am sure that is a not my job in normal circumstances but with chemo immunity perlease!!!!!! Where are the rubber gloves 😠😷
WolfEE
Member

Re: May 2017 chemo starters

Mai7, here's hoping you won't need the borrowed undies also 🤞Let's hope your back home and in your own fresh clean 👙Today??
Sorry I'm loosing track with eveyone I'm reading but can't take anything in? So love ❤️ 2 u all and hope your weekends are going well.
I'll not say much because I'm quite negative at the moment and feeling sooooooo down this appears 2 happen each time for me on day 6,7 & 8. My hand is still sore it's like the skin has got tight and if i move my fingers I feel like my hand might split open.

I'm feeling like I've had enough now. ☹️
treehouse
Member

Re: May 2017 chemo starters

Here you go Mai.....sending you fresh undies 👙 👙 .
Really hope you don't need them. 😊 x
Mai7
Community Champion

Re: May 2017 chemo starters

Morning ladies, I told the nurses I have to be let out today as I've now run out of clean knickers! They told me they have more if I need to stay another night 🙉 I've finished reading the "beat cancer" book which I think is probably the best anti-cancer book I've read yet in terms of being informative and well organised for quick reference.  I'm moving on to read a creative book now to give my mind a rest from cancer. It called "the creative habit" by Twyla Therp.  

 

Glad you have tried the guided imagery meditation treehouse and Trisha, I find it works really well as I'm not very good at switching off the mind and it gives your mind something to think about.

 

MJK, thanks for the dance: you look silly if you dance, you look silly if you don't dance, so you might as well dance!

 

AnnieA, well done to your daughter, you must be very proud that she has been so thoughtful and proactive.

 

Must dash, my weetabix needs me

Trisha69
Member

Re: May 2017 chemo starters

Hi Treehouse, use a pop sock or an odd sock.  Everyone has odd socks dont they?  I have a bag full!!  Live with a Sock monster 😉 x

treehouse
Member

Re: May 2017 chemo starters

Morning.
Wolfee how are you doing today? How is your hand and mood?
My brother has 2 little girls so I am sure he will want to find out too.
Trish I am struggling with sleep. I used to be an Olympic level sleeper, if it were a sport I would have medals! But with chemo and this heat I seem to have lost the knack. My body thermostat is broken and I itch. I thought it might be body hair starting to fall out but I also itch in hair free places too like my hips and back. I have moisturizer and oil. I am just moaning.
Coincidentally my mum also brought me a massive bunch of lavender from her garden. I didn't know what to do with it so it I hangings in my conservatory. But I like your idea Trish. Not sure I have a teddy to operate on. The kids may not be to keen for me to kill one of theirs lol 😂 🐻💉
Hope you get home today Mai and your neutrophils are behaving. 👾
Trisha69
Member

Re: May 2017 chemo starters

Morning ladies.
Was given some lavender yesterday. Un stitched a tiny teddy and stuffed it. Went for
a nap at 3pm and woke at 7! Then 11 pm tto 4. Also played the meditation track off Spotify. Feeling quite refreshed. Did have 2 glasses of low alcohol rose too 😉 have a good day ladies.
WolfEE
Member

Re: May 2017 chemo starters

I think with male relatives they get tested because although they are at a lower risk because they Havant got overys etc If they prove to have the bean are best aware because if they go on to have children in the future they can be aware that they may pass it on that way just so they can be aware especially if they have girls.
The genetics people said if they can get to the bottom of what I may have (they may not find it) they will also check my nephews (I don't have children)
About 15 years ago I tested negative braca but I've been told even the way they test braca has changed so they will check again. Back then they didn't really check for anything else. They are more aware of others now but she warned me that there are still far more they don't know about than ones they do and likely they never will.
Rosie65
Member

Re: May 2017 chemo starters

treehouse - no I haven't had surgery yet, went straight to chemo. My sister, niece and daughter are all being tested first and are linked to a family file. They also suggest any males being tested too as elevated risk of bc and prostate cancer but their risk is nowhere near as high as females so not the same urgency

 

Annie A  - well done to your daughter, you must be very proud