Hi everyone. 1st Pac done today. Was ok. Only thing I noticed was pain in my boob (I only have one). Like throbbing hormonal pain for few seconds. But nurse didn’t seem concerned.
I also feel we could do with follow ups especially first year after our operations . I don’t know what normal is anymore on operated side between numbness and the on and off pain.
Home now and on sofa slobbing!
Hope everyone ok and treatments going well. Xx
North or South Wales? X
I had that on and off for the first four rounds, then I had an updated ultrasound done presurgery. Mynipple reappeared by round three and my oncologist could not feel the HER tumour nor any evidence of DCIS.The only things they could find on the ultrasound were the titanium tags marking theDCIS areas andthe tumourand no obvious lymph nodes. TBH it was kind of good to know it has been doing more than just hitting me hard with side effects. Finished pre surgery chemo yesterday. Still have to wait till after masectomy and auxillary lymph node clearance histology as checked everything but that was the first time l felt a hint of hope.
I do hope the pax is quietly zapping away at your unwanted lodger too. I did find post chemo day three even l resorted to paracetamol as my boob was throbbing away till day eight. A darn good none wired very supportive bra helped. Let your oncologist know and especially if it’s very painful and paracetamol is not enough. ( more so if for any medical reason you cannot use any over the counter pain relief) they may well be ableto prescribe something to make your world a nicer place. My BCnurses recommend I got a breast cancer seat belt cushion as l foundthe seatbelt crossing over the area where chemo was at work was very painful. Again that made it much nicer. The Cancer research shop sells them.
I had pain in my ‘healthy’ boob. I have read up that it can happen. I have a review next week too
@maystarter thanks for sharing your first pac experience….so far. I hope you continue to feel well 
. EC and the injections seem to make my boob hurt, and sometimes the scar tissue. I had a lumpectomy and they stuffed some fat and skin from under my arm to fill it. So my boob feels hard in that area and, at times uncomfortable. Not so much sensitivity, but that sometimes comes back in time….the pain is sometimes the nerves trying to get things going?? One of the good things about the op, was telling my family I was not allowed to hoover for weeks 
. Enjoy taking it easy, you so deserve it.
@poppy261 thanks for the magic spell, I think I must live too far away lol 
I do use your vit c trick, it makes my tongue feel more comfortable when its bad, but it doesn’t bring my taste buds back. It’s like having covid taste buds. I have plastic cutlery ( camping stash), should I need it for the pac metalic taste.
I am secretly hoping for a week off too, but I get to see my blood test results on the NHS app, Patient knows best portal. I’ve seen some of todays, and they are not much different to last time, several reds( out of range). I have no idea what most of it means, but I like to be nosey. Hope you get the result you want tomorrow lol, provided of course you are well. If you do have chemo it goes well.
I was told on the scalp course and by a chemo nurse that my eczema on my scalp my get cured by chemo……so far it’s been an angel. I do sometimes slap on sun oil (factor 50), so its getting moisturised lol It cannot hide behind hair anymore!! LOL I also use Faith in nature conditioner(curly hair/dry) on my scalp and fluff.
Your eczema sounds really bad….just a thought, provided you’re not allergic, have you tried using an intensive hand cream on your hands and feet( I use a Lidl one)? I use it on my hands when they are really dry and crack( a little goes a long way). I sometimes use it on my face when normal moisturisers don’t do much…I get eczema on my eyelids and under the eye area. My sister tells me off for using it on my face lol.
Thanks @wibbles . Really pleased you had some positive news. Good luck with your surgery, I hope it all goes well and that you are not too uncomfortable afterwards. Big hugs for you 
I keep getting a song in my head……the lyrics that keep going round my head are….I get knocked down, but I get up again you’re never gonna keep me down……..Good mantra for me on a bad day….and possibly an ear worm for you all, if you know the song lol….just ignore the bit about alcohol lol 
Have a good one
Good to hear today went OK @maystarter . 
. That must have been a huge relief..
Glad to hear you are slobbing on the sofa now. 
Odd about the boob pain, but I guess if they were not too concerned that is something to hold onto. Theres always the 24/7 to ring if you are not sure. But these drugs give us so many grim harsh side effects dont they. Most of them the Teams just say its “normal”. But they can be another awful thing to navigate round.
Re numbness. Ive got that under my arm where they took out lymph nodes. I was told it could last for months and could be permanent. Cant say its a joy to have, but I guess its either that or cancer. So hey ho. .
So many new “normals” to get our heads around.
We are such strong ladies arent we. 
. Definitely a strange new “normal”.
I guess high temperatures, sudden rashes and serious pains are what they seem to worry about more. Keeping my fingers crossed its nothing more serious.
Enjoy slobbing and giving yourself TLC.
@baldiesrus love your song. I remember that one. I use to sing it when going through tricky bits in life. . Happy for it to become an ear worm 
Oh no sorry the spell didnt work. 
. What a rubbish spell that was .
Yes I use the high intense creams. Not as much as I should as they are so greasy they get everywhere. One minute i’m a shedding snake 
, The next a slimy snail 
.
Im going to have to really push myself during Pac though. But the gloves/socks are helping to contain the grease as well as aid the moisturiser. Shame its a heatwave though 
Ive got to be careful as my eyes get dry and watery, and all my creams say “dont get near eyes”. what do i do?….put cream on my hands, then rub my eyes 
. Ouch. When will I learn.
Thanks @wibbles for all your great sharing. . So glad you have finished all your chemo now. . You must be so relieved to get all that out of the way.
Sending huge love, hugs, strength to all you amazing ladies. .
Thanks so much for sharing. .
Good Luck for today’s first Pac, @poppy261 . Will be rooting for you. Or is it ‘ routing’? Whichever…all the very best and here’s hoping it’s better for you, and kinder than bloody vile EC!
Sending hugs to you all.
Thanks so much @bea4 .
Still pooped from EC. Vile stuff. Xxx
. So was hoping my bloods were down so I could have a week off . Wishful thinking. Miracles can still happen. 
Hope you are doing OK. Sending love and strength your way also.
Best wishes today @poppy261 
Thanks @want2beme . Hope you are continuing to do well.
I can honestly say I went screaming in my head. 
. “No let my bloods be bad”.
No luck bloods were said to be fine…until I got them at end of chemo. HB was 111 instead of lowest score being 115.
Everything else was fine, but they said Pac can give us more serious anaemia, and that may result in a blood transfusion to keep the chemo on track. Time will tell. But they obviously were not unduly concerned about 111. Drat.
Generally:
Ist Pac went without any problems yipee.
I fell asleep and the Nurse said that would help, as I wasnt stressed when asleep. 
She said, when I went home, to watch out for:
Stomach upsets; mouth sores; tingling/numb hands and feet; neuropathy sensations; eczema; fatigue (haha thats my new norm); some nausea; depletion in blood levels; rashes; metallic taste; loss of taste; loss of appetite.
The first 3 infusions carry a risk of “initial reaction”. So I have to be vigilant during infusions, for the first hour, of anything strange eg. Pain in back; strange nerve feelings, fever etc. She said symptoms could vary, so to listen to my body. I was not to go to the toilet in that hour, incase I fainted.
So I went between pre meds, and Pac. Then, after an hour, I was able to unplug, and wheel unit with me to the toilet as it has a battery backup.
If anything happened, they would switch off the infusion, wait, then start it again slower.
I had no toxic feeling at all. Another yippee.
Ive no meds to take over the weekend. I normally take an extra 17 over the weekend. Im only to take, as-and-when tablets for sickness only if needed.
I do still have pagfilgrastim tomorrow. Spelling may be wrong. 
. Chemo brain that cant be bothered to get the packet.
Am I tired . Im always tired. So that wont change. 
All in all, Im cautiously relieved,especially with respect to the infusion. Side effects still have time to brew. 
.
So I am not going to be blindly optimistic as I dont want an emotional crash, if things go wrong.Im a realist, so happy to consider yin and yangs 
so I can plan for eventualities and do preventative actions to limit side effects. But i will tick off good days of they happen. 
.
They said ALL symptoms MUST be reported to Oncology 24/7. So they can monitor us at their end. Its a different drug to EC so they need to know how we react to this one. Which seems sensible and reasonable.
So never ignore symptoms.
Hoping this helps those coming up to Pac and Doc. Both drugs are similar.
Fingers crossed all our Pac/Doc infusions are as easy as this one
There is hope @bea4 .
Thanks @poppy261 Im a bit nervous about getting Pac already so that info helps. Did u wear compression gloves or socks?
No @want2beme . My Oncology Team were not positive about them at all. Not sure why. They said they had never had anyone use them in chemo sessions. Yet they are pro cold capping and a Training Hospital.
I spoke to my BCN Someone Like Me Volunteer, and she said she was never bothered with Neuropathy. But some ladies are very bothered with it.
My Oncologist did say my hands may get more sensitive, so to use general gloves when doing things, if that happened. Even getting items out of cupboards.
I am coating my feet and hands with lots of creams to help them,as I suffer from hand/feet eczema which has flared up on EC. Thet get, red, inflamed, sore, peel and at worst can crack, bleed and get infected. Ive bought silk moisturising gloves to use at night alongside creams. I cant use cotton as its like sandpaper on my skin when its sensitive. But Urea Cream 10%, Epimax and silk, seem to be helping at the moment.
I also emailed my Lymphedema Nurse and she would not prescribe compression socks unless I was to have a problem.
So perhaps they just want to wait and see . Everything cost to them, so they probably dont want to spend money if most people are not unduly effected. Which I can understand.
I think personally, I would only want to use Ice Gloves and socks/compression gloves and socks only if they came from the NHS. I would not be confident in getting anything from Amazon as I would not have an expert advising me on safe sizes etc. But again thats a personal choice. I know compression socks need to be carefully fitted, as they can create problems if fitted badly.
If a Trust supported their use, and advised us, that would be great. I am sure people would pay for them, if cost was an issue for NHS. But until then I am cautious. I may regret saying that if I end up with neuropathy.
Ive had no side effects today, which is abit nicely weird but Ive decided to just enjoy good moments when they happen, then prep sensibly for possible problems, do some preventative stuff, and deal with problems when they surface.
I would speak to your Team and see if they support you with socks and gloves. 24/7 Teams may be good for that so you can make an informed choice. Over the weekend is a good time as you get different Nurses with different views.
Neuropathy is not nice to have. It can get in the way of chemo sessions. So it would be good if something helped. But we do need professionals on our side.
Just found this @want2beme . May be useful to see how complex compression garments are generally.
They need a lot of assessments and monitoring. They would need more when used alongside chemotherapy
@baldiesrus when I have EC my wound site and scars are so so sore, made worse by the injections too. I had a single mastectomy and a reduction on the remaining one.
This round the bone pain is all around my neck, shoulders and head, particularly jaw and cheek bones 
and awful nausea
Only two more white cell injections and then I won’t have to hopefully do anymore again 
I honestly can’t wait!! 
I’m hoping PAC has less severe side effects, but who knows 
Hope you’re all managing to keep sane in this heat you lovely lot 
Hey @alannah172
I’m on a regime where I have Pac by itself for two weeks out three and I can honestly say that I have virtually no side effects with it. I have the round on a Friday then on the Sunday and Monday I tend to feel a little bit more tired than usual and sometimes a little down but nothing major then totally back to normal on Tuesday.
Hope it’s kind to you too. x
That is so good to hear! I’m glad it’s going well for you
I have been told it’s less severe than EC, thankfully!! My patience is being very tried right now by EC
Yep, I had one dose of EC before my treatment change and it was a lot rougher than the Pac!
I switch to immunotherapy plus EC in mid-August for 3x3 weekly cycles and I’m not looking forward to it. That said, it is the start of the home stretch and I do get a couple of weeks off in between instead of the weekly grind. Such mixed feelings!
I completely understand that sentiment that you can see the glimmer of the end I’ve 12 x weekly PAC and then it’s over. It’s still nearly 3 months, but I can actually count down the weeks … so exciting!!
Sending you a hug, strength and love @alannah172 for this last EC cycle.
I found EC really pulled cruel punches over cycle 3-4. So rest rest rest. Its the only way I got through it.
Those injections seem awful for you. I really wish all Trusts gave Pegfilgrastim. I get no side effects and its only one injection. The last EC is bad enough to tolerate, never mind a week of injection side effects. You are one strong lady. . But you must be absolutely shattered .
Hope your fury friends are giving you lots of hugs 
, and your new shaded area outside is proving to be a haven for bad days.
Im finding PAC initially a lot easier. Though today my skin was more sensitive to urea cream 10% last night. So woke up with sore hands as if I’d used hydrocortisone cream . So I may need to just use gentler creams in future.
Ive got red cheeks but I think thats the normal steroid reaction from hospital pre meds. Ive had those each time after infusions.
They gave me, liquid anti sickness, steroids, and piriton antihistamines this time as pre meds.
But ive got no nausea. Plus, so far, I dont have that crippling fatigue of EC. Which I hated.
So far my taste is still OK. Which is a bonus. So im going to enjoy food whilst I can. So there is hope for us ladies.
Just focus on EC being over very soon. Give yourself lots of TLC. But I did find sleeping through it all just made the days go quicker and allowed my body to work on healing. 
If I tried to do too much it made the side effects worse.
Hope you are coping with this heat. I got a flannel yesterday, soaked it in cold water and placed it on my bald head 
. It was pure bliss. One benefit of a bald head .
@poppy261 thank you so much for the detail you give about your experiences, it always makes a difference!
That’s a good idea about wet material, somewhere I have a cooling scarf thing from my running days, I’m going to search it out now for my head.
There’s a breeze here today, so the heat is a bit more bearable