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December 2017 Chemo Starters

SamH87
Member

Re: December 2017 Chemo Starters

Wow Kirsty... that’s scary!! They definitely should have told you they were upping the dose though! I didn’t know that was even a thing??
Hopefully they get the meds right for next round though...!!
When are you next seeing your onc? Xx
KirstyH
Member

Re: December 2017 Chemo Starters

Oh thats weird you only had it on 4th cycle unicorngirlmummy, wonder why you didn't get it on the other cycles too? I didnt get it on 1st cycle of tax eithee but then i assumed it was maybe the increased dose that caused it. That is exactly what it started with with me, unable to lift a cushion! And I thought hhmm this isnt right lol xx
Unicorngirlmummy
Member

Re: December 2017 Chemo Starters

I also had that pain Kirsty. Only on the fourth cycle, mainly my arms, shoulders & legs. Just lifting the cushions in the bed was painful & a huge effort! I hope you start to feel better soon.

Hope everyone else is doing ok xx
Moijan
Member

Re: December 2017 Chemo Starters

Aww Camilla what a shame. You could try throwing yourself at their mercy,  I’ve done it before. Said I’m on cancer drugs, and sometimes not well...worth a shotxx

 

Moijan

Karebear
Member

Re: December 2017 Chemo Starters

Am sorry to hear the ladies on the T treatment are having a rough time.
Am day 10 of treatment and am feeling normal again
It's funny it's been day 10 after all the cycles I feel half normal
Xx


KirstyH
Member

Re: December 2017 Chemo Starters

Yeah it was really scary, I didnt know it could do that?! I knew you could get joint and muscle pain but no one warned that it could be to the extent you cannot move or walk. It is horrible isnt it rabbit! So im not the only one to have had it that bad.Glad yours only last a few hours, the worst of mine probably passed after 12 hours. They are prescribing gabapentam painkiller tablets that are for it that you start in advance for next time, im praying they work.

Yeah no one explained the docetaxol dose geta increased on round 2 of it, until i was in hosp and the doc said thats what had been done.

I thought the pain was also from the injections but im back on them now and has 3 days worth a no major pains so it must have all been muscle/joint stuff

Oh the snow here is crazy!! All buses cancelled in Edinburgh and airport closed/trains off. So im safe in my house... ill see if I can send a pic x
rabbit28
Member

Re: December 2017 Chemo Starters

Kirsty, really hope you start to feel better soon, I've had the joint and muscle pain to the extent I could barely walk in the first cycle and the last cycle couldn't move my arms or neck fortunately it only lasted a few hours, its awful.

 

Bed is the best place for you in this weather, especially with the forecast for Scotland!! xx

Camilla9
Member

Re: December 2017 Chemo Starters

Kirsty, what a horrendous experience! So frightening. ONC s should inform more about what may happen.

Also upping dose without ur knowledge. Hope ur Onc has been informed, they need to no what their dec produce.

Tht u had been quiet assumed all well.

Hope u recover soon. Xx
Cathsin
Member

Re: December 2017 Chemo Starters

Kirsty that's sounds scary hope you are improving x
KirstyH
Member

Re: December 2017 Chemo Starters

Morning Ladies, I have been a bit quiet for a few days as been having an even worse experience of tax this round than last 😞 apparently my tax dose was increased for round 2, jeezo it hit me like a ton of bricks. I started getting severe muscle weakness and pain in my shoulders and top of my arms on friday night, during tje day on saturday I couldn't even lift the duvet cover up to shake and couldn't lift my arm high enough to open the kitchen cupboard, this stiffness got gradually worse until by sat night time I couldn't move my arms at all 😱 I had lost all function of the muscles, it was agony and so scary! So went to hospital and they had to put me on iv morphine for the pain!! We think it was a double whammy of docetaxol muscle pain and the injection bone pain all hitting at once. The excruciating pain died down on sunday and went back to just a heavy sore achey muscle but was able to move. Since then ive had fevers, awful head ache and sore swollen bits at the back of my mouth, so off work this week in bed. I hate Tax 🙈 today the headache finally feels a little better and temperature is fine so hopefully coming towards the end of the worst part and maybe get 2nd half of the cycle feeling normal

That is great news on your acan camilla 🙂 always great to hear when they can see a good response

How is everyone today? Xx
Camilla9
Member

Re: December 2017 Chemo Starters

Will think of you. X
Cathsin
Member

Re: December 2017 Chemo Starters

Camilla looks like we have treatment on the same day x
Camilla9
Member

Re: December 2017 Chemo Starters

Not till March 14th, I'm only day 7.
SamH87
Member

Re: December 2017 Chemo Starters

I’m on them meds Camilla (been on them from the beginning) and can safely say that as sick as I feel up to around day 11 ... things go back to normal (ish) for the last 10 days!! Have faith that you will be able to taste the pancakes soon!
When is your next round? Xx
Camilla9
Member

Re: December 2017 Chemo Starters

This cycle the 1st time I've had these drugs so don't no if u still have the bliss of a wk 3 reprieve.
Last wk 3 I ate and enjoyed a pancake! Remember it fondly still.
SamH87
Member

Re: December 2017 Chemo Starters

Oh I know that feeling ... although I seem to make up for it in the last 6 days before my next round of treatment and am eating everything while I have some sort of taste back!!
2 more though 💪🏼
Xx
Unicorngirlmummy
Member

Re: December 2017 Chemo Starters

Brilliant news Camilla! Xx
Camilla9
Member

Re: December 2017 Chemo Starters

2 cycles left. Having docetaxel, pertuzumab and herceptin. If it had all been gone (!) I wld have asked to stop...
Still can't eat and everything tastes terr. Weighed today now lost 12 kilos since starting chemo. I Might as well be a chair or a table for all the need for food I have...
Cathsin
Member

Re: December 2017 Chemo Starters

Great news Camilla x
SamH87
Member

Re: December 2017 Chemo Starters

That’s great news Camilla!! Makes the slog of chemo seem so much more worth it doesn’t it!
How many rounds do you have left?
Xx
Camilla9
Member

Re: December 2017 Chemo Starters

Just to let u all know that ultrasound showed my tumour has shrunk by half and also my one cancerous lymph node.
Since I'm still having an op and complete lymph node clearance sometimes I wonder why I can't just get on with the op!!
SamH87
Member

Re: December 2017 Chemo Starters

Ah thank you Runawaygirl - I didn’t realise that’s what they did!! I guess I will see what node involvement I have when i have my surgery then. It’s looking like April — I feel scared as I’m now moving to the next step of treatment!

I had a meeting with my oncologist about the sickness last night and I have been given all the anti sickness meds ready for next week! I just hope something works!! I

Good luck today Camilla- keep us posted on how it goes 🙂

How are the side effects today Kirsty? Hopefully things have been better than last round!! 🙂
Lynnq
Member

Re: December 2017 Chemo Starters

Hi Moijan.  Thanks for this, The ulcers from my previous treatment are almost gone now, and when I start the paclitaxel I will have the treatments for ulcers ready - the mouthwash I use anyway..hoping for prevention instead of cure.  I have started using the aloe Vera organic. toothpaste from Holland & Barrett.  I am using an extra soft toothbrush but someone suggested using a toddler one, so I bought one yesterday.  Very soft and has a small head so should be able to avoid the gums.  It also is pink with a lovely Disney Prinvess design.

 

i have seen your post on the secondaries forums and would be good to compare notes etc.  How was your first week?

 

 

runawaygirl248
Member

Re: December 2017 Chemo Starters

SamH87 - you will have your lymph nodes tested as part of the surgery. You'll have a raduoactive isotope injected near your tumour site before your surgery (mine was an hour before and did sting a bit but hey ho...our breasts are aensitive areas!) which gives off a "signal" which they trace in surgery. Which ever nodes the signal flows to via your breast fluid will likely be the nodes that are removed. The surgeon may well put a blue dye in as well if the signal isnt strong which can stain your breast though. 

I had surgery before chemo as my tumour was classed as being under 2cm. I was lucky that I didnt need the blue dye as the isotope signal was strong. I had only the sentinel lymph node removed and had a micromet in it of 0.66mm which the team at Leeds class as a negative node (if micromet) so no other nodes to be removed or any radiotherapy to the nodes for me apparently.

 

For all ladies awaiting surgery, some good advice is deffo to rest up but try and use your arm as much as you can (unless you have a drain then follow your Team's advice) and do the arm exercises that are given to you - they really do make a difference! Be prepared for numbness and tingling nerve pain afterwards around the scar site. This is pretty normal as the nerves in those areas are moved about during surgery but it should settle down. I had the nerve pain for a good few weeks but it settled down then. I still have some numbness around the scar site and I had surgery in mid October.  As with anything though, you know your own body and if something doesnt feel right or worries you thwn contact your surgical team.  

 

Good luck to all those ladies who are to embark on surgery after chemo ❤❤

 

Camilla - you really have had a rough time with your chemo and I must say I admire your determination throughout it all!  Hope you are feeling a little better this eve.

 

Jo

Camilla9
Member

Re: December 2017 Chemo Starters

Still nauseous, no appetite, was up most of last night so v tired today.

Did not phone unit, they had given me diarrhea meds after last chemo so obv tht it might happen. I didn't bring myself to take the meds- up to 8 in a day. Chose to give my sickly stomach a break from more pills.

Runs seem to have stopped. Will take sleeping pill tonight.

Ultrasound tom to see if tumour has shrunk.

I booked a ho in Skiathosl last Aug for the end of this May but won't be able to go as will have had op.

Had not taken out ins as felt too soon at the time so will now lose all the money. Currently hardly want to leave the house so no hol not a prob.

Moijan
Member

Re: December 2017 Chemo Starters

Camilla, how are things now?xx

Moijan
Member

Re: December 2017 Chemo Starters

Hi Lynn q

 

just to mention that I am on my second three week cycle( of 6-8) of Paclitaxel. So I will be on it for the duration of your treatment and beyond....if it works for me. So we can jolly each other along if you like.

 

re the mouth ulcers, so sorry about that...it’s really important to rinse your mouth after each eating and drinking.i did have sore spots in my mouth but I now rinse with. The mouthwash prescribed and floss each day when I’m up to it. And try to clean my teeth properly......lots of extra mouth care.....tend to floss when relaxing as I find everything takes so much more time now.

 

Best of luck and let us know how it’s goingxx

 

Moijanxx🤗

Unicorngirlmummy
Member

Re: December 2017 Chemo Starters

Hi Sam, as Rabbit said, they check during surgery. It is daunting nearing the end of chemo, like a double edged sword really. I’ve found they tend to only deal with what’s going on at the moment. I like to know everything & get my head around the what next. Our team tends to deal just one step at a time. How long after chemo ends will you have surgery?

Camilla, are you feeling better? Did you call your unit?

Hope everyone is doing ok xx
SamH87
Member

Re: December 2017 Chemo Starters

Thanks ladies... I think now chemo is starting to reach an end I am now starting to worry about surgery and having a huge shock with the path results!
Good to hear that micro mets isn’t classed as positive nodes though - thanks Rabbit!

I will definitely speak with my surgeon when I see him though. I feel like I keep asking them but until I have had them tested in surgery ... I won’t rest!! 🙈xx
Camilla9
Member

Re: December 2017 Chemo Starters

Hi Sam, if ur scans and ultrasound have shown clear lymph nodes, lucky you! Right from the first diagnosis I was told my lymph nodes were cancerous (don't no how many) and on the ultrasound I cld see for myself, it was obvious.
When I have my op the surgeon is going to do a complete axilla clearance. (Even if the chemo has miraculously cleared it all up)
They will not 'leave a stone unturned' when u go for surgery. Please don't worry and you can discuss with the S before surgery happens.
rabbit28
Member

Re: December 2017 Chemo Starters

Hi Sam, my sentinel node biopsy was done when I had surgery and I think this is the same for everyone in that they test the sentinel node at the time of surgery and if this is clear then others will also be clear. I had three removed altogether one being the sentinel node and two others. One of mine had micro micrometastases but the consultant said they do not class these as a positive node. 

 

Try not to worry as I'm sure they will test them when you have surgery, probably best to ask your consultant when they plan your surgery so you know for sure and tell them your concerns. Hope this helps xx

Cathsin
Member

Re: December 2017 Chemo Starters

Sam I have an intermammory lymph node that was taken over by the cancer too . I had a biopsy on other node and they thought something sinister was going on so sent it to Leeds but came back as clear they were thinking it was lymphoma . I don't really know anymore really . I phoned my breast nurse today regarding when the likely time period of operation is going to be . She made me an appointment with the breast surgeon on 28th March so am sure she will fill me in x
SamH87
Member

Re: December 2017 Chemo Starters

Ladies — I have become totally obsessed with ‘lymph nodes’. I have never had any kind of biopsy and have only been told that my lymph nodes ‘look’ clear on my MRI/CT/ultrasound.
So what actually constitutes as lymph node involment? Am I going to end up having a nasty shock after surgery and find out that all of my nodes had cancer cells in them but it was too small to see? Everyone I speak to has had their sentinel node biospy and this wasn’t offered to me before I started chemo.
I also keep hearing about ‘micromets’ In lymph nodes... does this class a as a positive node??
Can anyone in this group offer some advice? I’m heading towards the end of chemo and now starting to freak out!! Xx
Lynnq
Member

Re: December 2017 Chemo Starters

Hello drbexi.  I hope you don’t mind me joining in.  I have just joined the March 2018 group and I am to start Paclitaxel x 12 on the 13th.  I have been searching the forums but I don’t see many using this treatment.  I wonder how you have found it.  One of my main worries is mouth ulcers.  I was on an oral chemo for three months, it didn’t work but gave me horrid mouth ulcers.  This time I want to be prepared for them before I start, 

I will go back and read your other posts - might find more info there.

Shi
Community Champion
Community Champion

Re: December 2017 Chemo Starters

Hi camilla, think you need to ring your unit and let them know about runs and lack of appetite, just to be on safe side darling 😘😘💕💕shi xx
Camilla9
Member

Re: December 2017 Chemo Starters

Having terrible 'runs' tonight, no idea what brought it on as I can hardly eat. Can't sleep, waiting for the next urgent dash to the bathroom.

 

Feeling sick as well so at my most miserable...

Cathsin
Member

Re: December 2017 Chemo Starters

Hello ladies hope you are all doing ok although some of you seem to have been suffering this week again . Had my no 4 chemo on wed which lead to the weekend being a complete write off although that was no surprise really . Latest gift from chemo for me is painful aching of my feet when lying down not sure if this is stsrt of peripheral neuropathy but am going to phone the cancer centre in the morning . They are ok when I am up and about ... up and about who am I kidding . Big respect to all you ladies who are managing to get out walking .. maybe I just need to push myself more x
Moijan
Member

Re: December 2017 Chemo Starters

Yes drBexl

 

and Mine is3weeks on one off, which might be easier but I’m left wondering during the off week....13 days is along time without a blood check!

drbexl
Member

Re: December 2017 Chemo Starters

This chemo is a long old journey isn't it ... kept myself occupied so far by planning a new kitchen, as was left an unexpected legacy ... so that's been exciting! Managed to go out yesterday for a friend's surprise 50th, and somewhat paying for it today ... sleep sleep sleep! 

 

5 more weekly paclitaxel to go, then rads, then tamoxifen... x

Moijan
Member

Re: December 2017 Chemo Starters

I was sent home same day, but I do hate having to go in....actually, I might not have needed to...just felt so awful and wondered if I was nutrapenic....Thank God I wasntxx

 

Unicorngirlmummy
Member

Re: December 2017 Chemo Starters

Morning, hope everyone is warm & feeling relatively ok, on this very cold day!!

Sorry to hear you’re back in hospital mamadeacs, that sounds so painful 😕.

Hope you’re feeling better Moijan & that the antibiotics have started to work.

Camilla, my jaw was quite achey the first 5/6 days after chemo, it kept locking too. I thought it might’ve been from not talking much or eating or drinking very much, maybe another side effect though!!

Good luck to those in the chair this week, another one to tick off!!

Xx
Camilla9
Member

Re: December 2017 Chemo Starters

Jaw pain comes and goes but I have very dry, achey throat. Also dreadful taste in mouth, all food tastes awful.

I have lost 9 kilos since chemo started, have no appetite at all and always slightly nauseous.

But - hopefully, halfway through chemo now so just getting through each day as best I can. How some of you manage to work as well I have no idea.

No snow yet here on the Kent coast, will try to get out for a walk today. Thinking of you all.

Mamadeacs
Member

Re: December 2017 Chemo Starters

Thanks Camilla...how is your jaw pain doing now? Xx
Camilla9
Member

Re: December 2017 Chemo Starters

Oh no Mamadeacs and Moijan. All this toing and froing is ridiculous. So sorry ur going thru such diff times. Thinking of u both. Big hugs.
Mamadeacs
Member

Re: December 2017 Chemo Starters

Hello ladies....I do hope you are all feeling a bit better.
I’m back in hospital again I can’t believe it, only came out Thursday night. Seems I was discharged too early with a high temperature, I know they are desperate for beds but they need to finish dealing with the ones in the bed already! Oral antibiotics not strong enough so I’m back on IV for a few days again.
Love and hugs to you all xxx
Moijan
Member

Re: December 2017 Chemo Starters

Hi ladies, I was feeling a bit left out, so I ended up in a&e today, but my neuts had actually risen since last wed, so they gave me a huge dose of iv antibiotic and threw me out...my arm was red and it’s likely cellulitis and normally they kept me in for 4 days but seems the policy has changed... can’t say I mind much about that...tho I hate taking antibiotic even by mouth...I think I’ve had far too many, so I’m drowning myself in Kefir which my onc is quite happy about....I just don’t need diarrhoea.

 

anyway, I’ve got some filgrastim, so hopefully I won’t need admitting  again.

 

im very envious of Fiona, lucky lady, but sorry for all my friends who have this continuous nausea xx

 

hugs, Moijanxx

Camilla9
Member

Re: December 2017 Chemo Starters

Mamadeacs, you poor thing. What a horrible time you've had with mouth/throat. Really feel for you, hope it heals up quickly.

 

Lots of hugs xxx

Mamadeacs
Member

Re: December 2017 Chemo Starters

Hello lovely ladies...sorry I have been awol for a few days, I really have felt super-**bleep**e and just hankered down waiting for it to pass.

I am home from hospital now, CT scan showed no blood clot and no new tumours so that’s a relief. I have got to have another heart scan as my heart rate keeps going really high. As for my mouth and throat...when I was admitted I had an ear infection and a throat infection with open pus areas. I have Mucositis again which gives you the biggest ulcers everywhere. On my discharge letter they said it is Grade 3/4. When I looked up grade 3/4 it says severe to life threatening due to open wounds causing septicaemia!! Thank god my neutrophils were 3.4 and not my usual 0.4 or I would have been in trouble! Throat has cleared up now but ulcers are still there and tongue still swollen. I had 3 days on IV fluids as I couldn’t swallow or chew. I did lose 7lbs this week so that was positive! I’m on morphine for the pain, I can’t believe a sore mouth could be so debilitating.

I have only scanned the chat since I was last on and can see many of you still having issues. Sending you all big cyber hugs (((((O))))) xxxxxx
Nikki 💜
Camilla9
Member

Re: December 2017 Chemo Starters

Some good news!

When u read comments from other threads re docetaxel it makes one really apprehensive!

Hope it continues this way. I have slight pains in teeth/jaw but maybe I'm just trying to find something!
Unicorngirlmummy
Member

Re: December 2017 Chemo Starters

Glad it wasn’t too bad Kirsty!

Camilla, I have had 10 injections each cycle, it’s only been this fourth cycle that I feel really achey. It’s more my arms & legs, they feel like I’ve done a body combat class! Just lifting the cushions on the bed feels like hard work. I’m day 8 today & feeling much better, still achey but it’s not as bad xx