May 2017 chemo starters

[WolfEE]

Treehouse, yep your husband can be smug it was good having the cannular in my foot. Firstly it saved my hand that was still so sore from the drip the night before and will protect it a little ready for next chemo. It was a little painful putting it in and they had 2 use a special needle that they use on children but after it was in then it was more comfortable than in my hand especially as I still had free movement of my hands and arms.
Downside is because the vein in foot is smaller the liquid has 2 go through a lot slower but is still choose it again.
I asked them could I have chemo through my foot the nurse wasn't sure because she wasn't sure if chemo needs 2 be put in a vein closer to your heart??

[misyangel]

Wandestrong so sorry to hear about your daughter.  As regards fourth fec I suffered with sickness on this one which came on day 6 which I have never had before and it lasted for 2 days.  The taste seemed to be bit worse and that always lasts a week for me. My bum has been more sore this time but think it is cumalitive and doens't always heal from previous session then seems to get worse  I have a fissure I think they call them.  I am now taking movelax everyday now until I finish chemo to try and get it to heal

Katie11 we don't normally do anything for NYE and we have said we want to do something, be glad to see the back of this year too.  If everything goes to plan I should finish radiotherapy the run up to christmas then will just have to have my overaries removed after xmas. 

Rosie great news about the heart scan, I am due my second one in August and hoping I have the same results as you.

Mai sorry to hear you are still in hospital and commode does sound very undignified then again I think everyhting we are going can be undigniied.

Wolfee OMG can't believe they put it in your foot that sounds horrible hope it wasn't to painful.

[treehouse]

Just dropped smallest boy off for boys brigade camp. A week in Weymouth he is looking forward to it 😊
I was the embarrassing mum in a scarf insisting on hugs at the bus stop. 😂😂
A family day at the inlaws for the rest of us. I am still fighting nausea. Where has that come from???
Happy everyone is ok and comes home soon.
Take care Trish day 3 or 4 tends to hit me hard. X

[katie11]

Glad your allowed back on big toilet mai!!!! How horrible for you x

And wolfee, oh no!!! Hope you pick up soon. How was the foot cannula?

Glad you are all home and done Trish. Camp bestival sounds fun.

Hope everyone else ok. Enjoy your Saturday xxx

[Trisha69]

Was avery long day and think the steroids prevented me from napping in the unit, and the radio next to me and the draft from the window lol.

Just managed 6 hours sleep 10-4 am, tummy ache had constipation on last 3 FEC, mayvbe docetaxol will have the opposite, Tesco curry not heloed.

Been invited to Camp Bestival in Dorset on SUnday 940 Mmiles from home)my eldest girl (23) on the gates and got me free passes. wellies at the ready and a chair just hope feel ok.  Nurse said the drugs had today can give you nasty flu like symptoms 😞 x

For all those in hospita, chin up and be home soon xoxoxo

[treehouse]

Oh Wolfee sending hugs.
Talk me through the foot canular. Hubby has suggested it more than once when they have struggled with my hand. I just told him about you and now he feels smug.
Hope you get home soon x

[Raitchr]

Wishing you all a speedy recovery, hoping you all get released from hospital soon. Sending hugs.

Heather

[WolfEE]

Feeling your joy Mai7 at being allowed back on the big toilet 👍🎉
I'm back in hospital back on the IV antibiotics waiting on blood results so I know if I'll be kept in or sent home. I've had today's canular in my foot.

[treehouse]

Mai glad you are bacteria free. The commode sounds most undignified! I know the hospital staff always do the best they can but we have exposed parts and been prodded and now this. Do we just become immune to it?
In this case I think not. Enjoy being able to lock a door 🚪
How you doing Trish?

[Mai7]

Bon Jovi "Living on a Prayer" is playing on the radio right now on the ward

[Mai7]

Wandestrong, so sorry to hear about your daughter. It must be hard but stay positive and you two keep battling on together. Just think how special your bond is and don't ever give up on each other. Sending big hugs. Xx

unfortnately, I didn't manage to escape.  They want to monitor my temperature for a little longer to make sure it has stabilised. Another lovely thing to add to the scenario is that since I had diarrhoea yesterday and today they have to keep me confined but don't have a room available to separate me into so the protocol I have to follow is that I am banned from using the shared bathroom except for washing and have to go to the loo on a commode beside my bed! Can you imagine how that feels during visiting hours - me peeing away on a commode behind a curtain! Life has reached a whole new level of degradation! (Could be a useful weapon if there are annoying visitors you want to get rid of Lol). Whilst I've been typing this a nurse just came over to let me know that the results of my stool sample just came back and it's negative for bacterial infection so I am now allowed back on the toilet! Hooray! Hooray! This is a very happy moment I want to share with you. 🎉💩🚽 🎉💩🚽

[MJK]

Wandestrong, sorry to hear about your little girl. It's amazing what they can do but it's more stress for you, big hugs.
Treehouse, nausea around Cadbury World is too bad.😝🍫😮
Rosie if the lump's on the left they'll go for the right.

Raichr, check out CND solar oil (you can get it through Amazon). I've been using it and my nails are in better condition than normal. I asked the oncologist about whether to paint them for T and she said that if the oil is working stick with it.
I hope you're being well looked after Trisha through the long day.
Mai have you escaped yet?
I've just been checking out our new M&S. It's the little things that please me like them stocking post surgery bras.😊

[Rosie65]

Hi all

Sorry to hear that some of you are having a rough time.

Wandestrong - that's tough news about your little one on top of everything else. Big hug xx

Trish - you must be so fed up, it all takes long enough as it is without any extra delays

MJK thanks for the advice about the Picc line, was hoping to have it in the right arm as tumour is in left breast and I'm left handed so wanted to avoid that side!

I know I have a lot of treatment still to come but as my BC is not receptive to hormones they have to throw everything at it at this stage incl radical surgery as I won't be able to have any hormone treatment afterwards.

Had positive news at the heart scan; it was the exactly the same as the pre chemo one in April. 

Mai- glad to hear you're feeling better; hope you've managed to escape from the hospital

katie - hope your eldest is feeling better; I can just imagine you with the Dettol etc. I'm always dreading anyone in our house getting ill.

[Raitchr]

Just back from Oncologist, they were running over an hour late, how do they manage that straight after lunch.

Anyway have been given Nystan oral suspension for oral thrush for next chemo so that should sort that out. Oncologist said re finger pain after last chemo they will keep chemo 5 same strength and if same sensations happen again they will reduce the final one to stop it. It can cause permanent damage so will be using Epson salts leading up to and after chemo to try and ease it before it happens. I have 3 ridges in each of my nails, looks like stripes, onco said they will grow out.

Goodie bag will be stocked with more Diffam for mouth even though GP gave me more last week. Continuing on with Emend anti sickness and will be given Ondansetron as spare anti sickness just in case. 

Roll on next Thursday to get chemo 5 out of the way. 

I went to appmt minus headgear, braved the walk through the hospital and then around Morrisons afterwards. Bumped into my Breast care nurse, she didn't recognise me at first and said I looked so well, to which I said despite the poisonings!!

Heather

[busybeeS]

Hi Wandestrong, I'm in FEC x6 only. No 4 for me was plain sailing in terms of the treatment. I didn't really experience any tiredness / fatigue on the 1st 3 but I have felt a bit more tired on no 4 though I don't think it was fatigue as such, just tired legs from over doing the walking I think. I've just had no 5 this week and so far pretty similar SE pattern to all the previous ones really - just know when they're happening - furry tongue from tmrw for a few days, constipation - not sure how long this goes on for as I pretty much take senokot every night! I've had low neutrophils each time on day before chemo but they always recover by the following day. Not much walking with this rain this week, so having a rest!

So sorry to hear about your daughter, hope every thing works out well for her. Really bad timing though xx keep strong.

[katie11]

Sending you and all your family big hugs Wanderstrong, sorry to hear your news about your little one. I'm sure she will be fine , she's strong like her mum. You really have had a horrible year mixed in with your little ones arrival. I was saying to my hubby the other day I want to do something nye ( we don't normally do much) I want to make sure i see the back of this year! Xx

[treehouse]

Wandestrong sorry to hear your news about little one. I hope everything goes well but that is a lot on your plate. Hugs.

Trish that sucks you already had a long day without a delay slowing you down. Not fair. I hope treatment goes ok and you get a good sleep.

We just got back from Cadbury world. Nice day with the kids but I have been fighting nausea for a couple of days now which is odd for week 3. I am now going for a nap. This chemo is definitely cumulative and catching up on me. Also got a phone call from BCN saying that after they discussed me at MDT meeting they have agreed my surgery but cancelled my MRI as I am having mastectomy. So just ultrasound to see if chemo killed it!

Glad you feel brighter Mai
X

[Wandestrong]

Hi all,

I haven't logged in for a while. Hope everyone is doing well (or as well as could be expected). I'm having FEC number 4 in a week, so this is my 'good' week until Friday. I know most people are on the FEC-T regime, anyone having just FEC and able to tell me how number 4 went in comparison to previous ones? I had a shorter recovery time with number 3, apart from the taste disturbance which lasted a week (I think this is the worst side effect for me). The omeprazole I requested after session 2 seemed to help avoid any stomach disturbance. I am still awaiting a referall for Genetics testing, apparently this has to be referred to a london consultant. 

Its been a tough period for me recently, on top of everything, my 3 month old daughter was diagnosed with a heart condition that may need key-hole surgery at some point, still waiting for her referall too. So I was grateful for smooth ride with the third chemo session, I had to drag myself to her hospital appointment on Day 5, in a somewhat dazed state. I'm counting down the weeks till chemo ends (15th Sept if all goes to plan) so I can focus on the next stage, Rads and regain my strength. 

All the best for a healthy and positive weekend ahead x

[WolfEE]

Trisha, what a mess with the app times. Roll on evening get this day out of the way. X

[Trisha69]

Thanks x

[katie11]

Oh Trish, how annoying long day ahead!!! Hope all goes well x

[Trisha69]

Eventually at 1130. Hadn't been highlighted on darn list. They have now said be 8 hours 😞 x

[MJK]

I hope you're being seen now Trisha. X

[Trisha69]

Fed up! Got to hospital ar 920 foe a 10 am appt that is ri last between 6&8 hours. Its now 1045 & still not been aeen. Feelike crying x

[Raitchr]

Misyangel, in my good arm my veins feel alittle tight as they run down my forearm, I am giving them a massage each day or when I feel the tightness. Hoping they hold out until the end of chemo, my nurses alter which vein they stick the cannula in each time, I write down which they use in my diary.

H

[Mai7]

Morning Ladies! I'm feeling a bit brighter today so fingers crossed I'll be discharged by consultants.  It's day 9 and I'm feeling a bit brighter today, so for me so far, day 1-3 is good and day 4-8 is awful for needly pains, oral thrush, loss of appetite.

WolfEE, sorry to hear you wound up in A&E and hope you are soon feeling better.

Good luck to anyone on treatments today and hope you are all coping well.

[katie11]

Oh wolfee. Hope your ok. How are you mai? This chemo malarkey isn't fun!!!

Good luck today those on treatment. Had sleepless night last night. Eldest was being sick so he slept in my bed with hubby and I slept (kind of) on sofa!!!! Been up this morning changing beds, cleaning with my Bleach and Dettol spray!!!!

Thanks for update on rads annie. Interesting to hear what is coming next x

Hugs to you all xx

[treehouse]

Annie. Thanks for the thorough run down of rad prep. Sounds intense and a little funny. Glad you were well looked after. Everything I have heard about rad is positive and doable compared to this. Good luck and keep us updated x x

Wolfee you have had one hell of a time . Hope the mess work fast and you feel better soon. Hugs

Jay I agree with all of your SE and I always boing back as soon as the injections are over. I have no 5 on tues.

Trish good luck today . You can do it. Be prepared for a few lazy days and be kind to yourself.
Mai how you doing? Thinking of you.

Keep fighting the good days come back quick and they are all worth it when you hear it is shrinking. X x x x x

[Trisha69]

They doing it all today. My 3rd 60 mile round trip to appts thiis week!

[busybeeS]

Anniej- thanks for the info for rads. I have an onc appt before treatment 6 to sign consent form and I was told it starts at the end of the 3 week recovery period for last chemo. They also said the preassesment appt takes the longest as they have to get you lined up exactly to make sure they don't do any more damage to healthy cells than necessary.

WolfEE, sorry to hear you've been in hospital, but I'm sure you know you did the right thing to get it checked out.

MJK - I guess as chemo and rads as so close together your body is still in recovery mode from chemo, so you will still have to be careful with infections, etc - so a holiday away from people and crowds is probably a good option.

Heather & Jay68, good to hear you've found a pattern for your new chemo drug, at least this way you'll know when you can ge out and about and have a semi normal life.

God luck for today Trisha and anyone else on treatment.

[misyangel]

Just catching up on everyones post as being away, we had to come back a couple of days early as my father in law felt he was coming down with a cold and my husband didn't want to risk it.  its been good to get away and feel normal for a few days.

Mai7 so sorry to hear that you are in hopsital, hope you get to go home soon

Wolfee sorry that you are in hospital to.  I reallly think all the chemo does start to take its toll.  Love the new name dozy tox hell lol

I think the key it to rest which for me my nickname has alway been speed gonzals as I rush round at 100 miles an hour and it has took me a while to slow down and rest.

Heather I suffer with horrible mouth on the fec for the first week, I havn't found anything to get rid of this yet,  I am like you I have avoided pic but I have got cording I I think they call it on both arms.  Have you had any of this?  I am constantly massaging to ease it as it can be very painful if I move it in a certain way.

Trisha69 Good luck today with first one, are they not doing yours over two days?  I have my first one a week on Monday but have herceptin on Monday the t on Tuesday.

[Raitchr]

Just a thought to all those picking up infections. I know I have said this before many times but it maybe worth mentioning next time you see Oncologist. My NHS Trust at Nottingham City (Sherwood Forest Hospital Trust) prescribe to all chemo patients a 21 day course of low dose antibiotics for each cycle. When I asked why, the chemo nurse said it is cheaper to do that than to have a patient taking a bed for similar iv antibiotics. We are still supposed to take temp and report any high temp or symptoms but so far I have been fine. The Trust is heavily in debt and have been giving antibiotics through the last winter season to avoid the usual germs and have carried it on.

Hope you are all feeling better soon, sending hugs.

Heather

[Jay68]

WolfEE - I can honestly say day 8 is when you feel "better" - hold in there! x

[Jay68]

Hi Trisha, Good luck for today - take it easy! x

[Jay68]

Hi Heather = I agree totally with your post - I am exactly the same with the Doxotexel (I have Herceptin and Pertuzumal - I'm over my second lot and I can say the first 3 days are brilliant - days 4-8 are the bad days - oral thrush, burning face, slightly high temperature, sore armpits, achey legs and general exhaustion - these are the days where (if I can) I stay in bed and when I'm up, I'm on the sofa and I eat just very soft/easily digestible food (all the really good stuff has to go out the window during this time!) - after those days pass there are minor daily side effects.  I've found with the oral thrush (being the absolute worse part for me) the nurse in the chemo unit prescribed me some mouthwash which you can swallow (Nystatin) but it's brilliant - tastes of cherries!  I will certainly be using that again if I get the slightest feeling of dry tongue/mouth/fizzy lips! 

This being my second session was much more manageable - I knew what to expect being the main thing and yes I agree I've had 2 good weeks this time - next session next Thursday!  

My thoughts do go to those who are suffering with their first Dox - fingers crossed after this first session you will find it more manageable - we will not be brought down by the meds!! x

[MJK]

Big hugs WolfEE, you're having a tough time of it. Good luck for today Trisha and well done for getting so much done yesterday. Thanks for the radiotherapy update AnnieJ. I have the same consultant for both and my next appointment is a double so we can cover both and get things lined up ready to start 3 weeks after chemo finishes. The measurements don't sound much fun. 😮Mai7 Hope you're doing better today.

[Trisha69]

Hi Treehouse, was a long day yesteray but felt best have in days, maybe the steroids in prep for new treatment today.  No 4 and 1st Docetaxel and Herceptin at 10 am.

We left home 7am yesterday and got back at 4pm.  Was a productive day (made sarnies)  Had heart scan 830  my second one and my heart was runnibg at 60% in April and 72% yesterday, was a bit miffed when saw the Cardiologist lady had pit me down as 58 years old and not 48!  The Doc/Oncologst thought it was funny!

Then went on to an assesment re a Blue Parking Badge, can only seem to walk 10 mins without hip pain (Ongoing prob) and exhaustion.

The went to Exeter to EE gat a new phone next week and a better package on Broadband tv etc 🙂

Saw a diff Doc/Oncologist she was lovely, bloods all good for today and I asked her to feel my lump which was 3.3cm before Chemo (3 xFEC)  .......She coukdnt find it!!!!  🙂   Says still obvoiusly have to carry on with treaatment and is booking me for a scan after no 6 so sometime mid September.  Nervous about today but will have my Bestie with me 🙂  Have a good day Ladies xx

[WolfEE]

When they took the canular (might be spelt wrong the hand needle thing) my hand wouldn't stop bleeding for ages l think it might be from the blood thinning injections from the blood clot?

[WolfEE]

Anniej, wow that sounded like one hell of an experience in that machine! I'll be thinking of you on the 12th please let us know how you get on. But first have a lovely time in Harrogate.

So the reason I'm up @ 1am. I've been at A&E on the IV antibiotics drip. My temperature was raised my throat was killing (wasn't sure from that was side affect from the dozy-tox-hell) my heart rate was really high so on the drip I went. After checking my blood they think it's a 'normal' infection so I have a weeks worth of antibiotic oral tablets and have now come home. 6 hours in a&e !!!!
This really is getting a bit much now I think we are all feeling the strain. Tomorrow will be day 5 does the dozy-tox-hell start getting better now?
Xx

[Anniej]

Don't panic ladies re rads and timing. MJK is right that you have to start your rads in three weeks, but that just means you see your new consultant , discuss what treatment and sign consent forms. The down side was that I have been recommended to have the sub clavicle lymph glands irradiated as so many of my under arm ones showed signs of cancer. I'm on day 20 since my last EC and saw my radiotherapy consultant last week. I've been into hospital today for a CT scan to check positioning. I had to climb onto and sort of into a large measured piece of plastic. Just like an enormous shoe measurer for the kids. Then a ridge was put against my bottom and fixed so I couldn't slip or slide during treatment. My arms were brought above my head and placed in stirrups. My neck also had a brace placed under it to tilt my head back and away from the lasers. When I was comfortable and the radiologists were sure I could stay completely still they marked every measurement on a chart. Then I went through the scanner a couple of times. Opened my eyes to see another member of staff getting needles ready - and yes, I have been tattooed! Look like big blackheads....lost the will to live by this point as your body is positioned and repositioned to get it exactly right. Staff were lovely, kind and respectful. My first treatment is Saturday 12 August , so we are off to Harrogate for four nights. I've taken a long time to recover from my fourth EC, and from the Doxyhell comments I don't think I would have coped. Thinking of you all, and hoping this is reassuring. The message from medics is this is the easy bit.🤔  I'll let you know, but keep going ladies, you will make it. X🍀

[MJK]

That's good to hear Heather. Right now I'm just appreciating not having red pee and feeling sick. Day 4 will come I know. Incidentally I think you missed my peppermint foot lotion on the scalp in the heatwave moment. As it has menthol maybe I ought to do it more often. 🤔 Glad you have your glasses Mai 7 I'd be lost without mine. Hope everyone gets some sleep.😴 x

[Raitchr]

Mai7 I have felt good since last week, once I got the tiredness out of the way day 3 and 4 and the yucky mouth. I would say 2 good weeks in the cycle. I have rested and not done crazy days out, we have slept in most mornings as the boys are on school hols, have to say the timing is great for me, My husband works from home and this is usually his quiet time, he has some work coming up but it is all doable around chemo thank goodness.

I can say so far I have found T much better, maybe as its just one drug in my system not 3 fighting through my veins, who knows. Maybe I just know I am close to being done.

I am seeing the Oncologist tomorrow and will be asking for meds for oral thrush as that was my worst side effect. So far my veins have held up and avoided picc line.

Hoping you will be better soon and can get on with chemo5.

Heather

[katie11]

Well done rosie!!! The picc line will make things so much easier for you. My veins went the same and with our weekly cycles it makes it all the more harder.

Glad to hear you still sound perky mai . Stay strong x

[Mai7]

Rosie, thanks, I've added that song to my playlist! 

Im missing all of my pampering goodies at home. The hospital is all very basic plus whatever I remembered to stuff in my bag. My man came for visiting hours and brought my glasses so at least I can read again! Hooray!

Still feeling a bit yucky in the intestines but my tongue is getting much better. I think they will prescribe some anti-cramping medication when the consultants do the rounds. 

Raitchr, are you getting 10 good days? Please tell me this gets easier!

Holidays, ah yes, I dream of a carefree holiday in a sunny place! I think it will be past Christmas before my treatments are finished so probably be looking at next Easter or summer. 🌴☀️

[MJK]

Hi Rosie. If it helps the PICC Line has made life much easier. Mine is in the right arm which is apparently more straightforward. If you get a choice go for the right. I'm guessing it comes down to effectiveness Treehouse. At least she said I would need 3 weeks not 6 so half term might be an option... Keep checking out the beaches Rosie, you'll get there at some point and it brings a bit of light in the tunnel. ❇

[Rosie65]

Hi guys just catching up on posts after chemo 4/12

Oh Mai I'm so sorry to hear you're back in hospital. This is all such a tough track to follow and so much to derail us, we just have to stray strong and at least we've got each other to keep us on track and push us towards the finish line. "Nobody said it was easy but ...... no one ever said it would be this hard"

That will stop you humming Chemo No 5!!

Struggled to find a suitable vein today as they have hardened up an not letting needle through so looks like I will have to give in and agree to a PICC line. To be fitted Tues if they can fit me in . If I only had 1or 2 treatments left they would persevere, but with 8 and every week the veins just can't recover in time.

I spend hours looking at holidays esp pictures of beaches, I'm looking at Kephalonia at the moment - pure escapism. Will prob be next year now so hoping to save up for luxury hotel.

[treehouse]

Wow! So glad government guidelines consider the exhausted chemo patient and their family.
That's interesting as my surgery needs to be at least 4 weeks after chemo in order for bloods to recover so I can heal and fight infection etc.

[MJK]

Because they have to start radiotherapy 3 weeks after chemo or they are fined. So if you were hoping for a holiday between the two - sorry don't book anything...

[treehouse]

Oh MJK why did onc say no?

[MJK]

I was hoping we could have a family week away the first week in October to the exotic location of York🏖 between chemotherapy and radiotherapy. Nope, oncologist ruled it out yesterday. 😔. I'm lucky enough to have a sister who lives in Devon in a thatched cottage with a pool. Hoping to spend a few days there.