June 2018 Chemo Starters

[Kip]

Hi Reddi thanks for the info, i guess ill find out soon enough, they definately mentioned tamoxofen, i suppose i have to get the surgery done first.  Im just thjnking ahead.

Lisa marie...  Crikey no wonder you have suffered with the chemo .all full doses!!!!  Mine was reduced for 2nd T and 3rd...  You really do need a break from it....  At least the BC will have been well and truly nuked!!!  Enjoy the extra week out...  Hope the hand improves.  

My OH came in from work last night and said another colleague has just been diagnosed with BC, thats 3 since my diagnosis and all under 50!!  It so scary...

[RedRose]

P.s he confirm or deny whether it’s Planter Palmer syndrome or not, he wants to see me in a week to see how it’s going xx

[RedRose]

Hi all. update from today: chemo will be delayed by 1 week as oncologist thinks I need a bit of a break. He took one look at my hands and said umm 🤔 I think we will give you a break and possibly reduce your last dose. Apparently I have given the max high dose on each cycle because of my age, so effectively it equates to another cycle 😳. I have been on the zoledex since before chemo to suppress my ovaries, as I was told the chemo would stop my periods and that they could never return as it could send me into early menopause because of my age. The zoledex itself is a big needle in the stomach but it’s bearable compared to the rest we been through. Not sure if the hot sweats I experience are early menopause or the zoledex xx

[reddi]

@Kip My understanding is that you either get Tamoxifen or Zoladex -- never both. I can't remember off the top of my head why they were thinking I'd get Zoladex based on my tests, but I have notes and an audio of the meeting, and can chase that up if you're curious.

Long, long day at the chemo day unit for me. Arrived 9:35am, cannula out 6:30pm. Tempted to order pizza for supper rather than tossing up our usual post-chemo salad...

[Kip]

Hi all, sounds like everyone is ploughing on with their chemos which is great. Hope you all manage to avoid too mahy SEs.

Cdc good idea to name my thumb....  Any suggestions...!???  Sounds like you had a lovely break away too.  My tingly thumb is also very dry..  i use Flexitol on my hands and feet it also has urea and is actually really for feet but is good on hands when reallh dry.

It really concerns me that you all seem to know about what hormones you will be getting, nobody has asked\mentioned ovaries to me, i was still havjng periods before all this although chemo seems to have stopped them but as my bc is 8/8 er+ i will need to stop all eostrogen, so they mentioned tamoxofen but not anythjng like zoladex?  Do you normally start the hormones after or before rads?  Perhaps i should call my onc nurse to ask?

Sorry i confused you with my photo...  Not exactly the kind of photo you would want on your wall but a poingnant milestone.

So day 12 today and although still tired not feeling too bad, larry tongue still hangjng around but taste buds sort of back tho not quite right..

Enjoy your Friday evening

kip

Xx

[LJ]

Apparently because the Herceptin doesn't need monitoring when given on its own it is weekend only and they won't give during the week. Given it's such a non-negotiable I don't understand why no mentioned it to me before. As luck would have it I already had stuff booked for the first three cycles on the Saturday and as I couldn't do the first Sunday either it's all moved on a week and will be on a Sunday. At least it should be in and out  - as long as there's no pharmacy delay....

I'll having hormone treatment too which I'm not looking forward to given all the horror stories I've heard about it. I'd at least like a little break to shift the weight I've put in over chemo and get back some level of fitness. 

And of course there is the radiotherapy to contend with too!  Have first appointment about that on Thursday where I have to persuade them to avoid my three days Belgium trip. That's been booked since before all treatment started so fingers crossed. 

My PICC line came out this morning, feeling slightly bereft without it!

My skin is like paper too, fed up with moisturising without any effect!  

Sorry, I'm all moans today, and given my slimming world journey needs to start with a vengeance again, I might need to pass on the cocktails!!!

Hugs all xxx

LJ

[reddi]

@Shi Ordered some yesterday -- arriving tomorrow! Thank you as always!

[ktk]

Also ask your go for Doublebase which is really good and free on prescription 😁🤑

[Shi]

Sorry udderly smooth with extra urea. Xx

[Shi]

Girls can I just remind you about the undderly smooth with extra urea on Amazon that is great cream for sore hands and feet, it was the only thing that worked for an lot of us 💕💕✨✨Shi xx

[reddi]

miod --> mood

I'm a terrible phone typist.

[reddi]

Hi all -- chemo is in for today. Had to be at the day unit at 9:30am, but pharmacy was slow delivering my drugs so I won't get my cannula out til 5:30 or 6pm: I get my first HER2 drug, then have a mandatory obsevation break for an hour before the second HER2 drug, then the docetaxel, then saline flush. By the time I start docetaxel around 4pm, I'll be amazed if my cryo stuff is still frozen.

@cdc My hands are super dry, despite using kitchen gloves and moisturizing *all* the time. I'm sure it's a combo of chemo, anti-bac hand sanitizer, and hand washing (I've had quite a lot of loo visits over the past 1.5 weeks and have been extra vigilant washing because of the C diff). I have some peeling and redness between 2 fingers, but I think this is the result of getting water in my kitchen glove -- I'm still not used to using them. Also: my breast cancer nurse said periods often come back after chemo for those pre menopause, which is why I'm a candidate for Zoladex, too.

@Sally What a lovely day for a walk to get your blood pumping and your miod up. I'll be interested in hearing more abour your trial when you know more.

@LJ Herceptin on the weekend? Ugh. Is there no way they could arrange for you to have it on a weekday?

@Mimi Congrats on so many fronts!

@Lisa Marie Any news on your hand and next chemo cycle date?

[SallyG63]

Woo home already. So much better than last week. Slept through from pre meds to flush after pacli, missed it altogether.

Thank god for piriton.

[SallyG63]

Hi,

Pacli number 10 today. Had a nice walk to hospital so my veins were pumped and canula in 1st time. No messing around like last week.

I think re the trial it's to do with the grade and aggressiveness of the cancer plus the fact I've had it twice. I'll find out more at the next meeting with the oncologist. Family history doesn't come into it for me because I'm it. No one else in my family has had breast cancer.

[cdc1811]

Mimi, good you are finally through the chemo and I hope you stave off the SEs too. Hope you feel you can have a bit of a breather before surgery/Radio.

ktk, Kip, LJ great you are all through chemo too- Kip I wasn’t sure what your photo was of to begin with (the machine they use at my hospital looks a little different) but had a huge smile when I read about you counting down the seconds with your Bestie. What a great idea!! Sounds like a lot of the units are quite low key about finishing and people have mixed emotions but I like the idea of the counting down to mark the end of that particular part of treatment so will plan to do the same in a few weeks.

Reddi, hope you get your chemo today. I have a pre-chemo assessment at 11 them the chemo itself at 2pm. Hope there are no more delays for either of us. Interesting to read how you are protecting your hands, I’m going to see how I fare on the Packlitaxel. I did read that even on P you can get hand/foot syndrome and all,the other side effects but Om sincerely hoping the lower doses will ensure I don’t experience anything too bad. I have had some peeling on my hands and feet but they are so much better. I do have very, very wrinkled hands though. Anyone else get this? Even though I moisturise Amy hands look they belong to someone over 100! It’s really quite odd.

Sally not too long now for the chemo but I do know what you mean about the never ending treatments. I’ve been told I’ll have zoladex(?) to shut down my ovaries - but chemo seems to have done that already. Don’t know if they return after you finish. I will be having hormone therapy. Interesting to hear about being part of a trial for a new drug. How did they determine your high risk? I have a familial high risk but as most predictive tests only allow you to put in for one tumour and I have two, no one has been able to predict my risk of recurrence which I find frustrating. My Cousin has just had surgery for BC, her Mum (My Mum’ sister) has also had BC snd I think we are now up to 8 people on that side of the family having had BC. I’d be interested in any trial to prevent recurrence especially as my Mum has had BC twice.

Shi thanks as always for your encouraging posts!

Thanks everyone for all the support and friendship in this thread, it’s invaluable.

[cdc1811]

Hi Ladies

So much to catch up on so apologies if I miss anyone out.

i had such a great day/night away with my OH.  We only went to Limehouse but I’ve was a beautiful sunny day and we really enjoyed walking along the Thames Path and listening to the waves when the boats went past.  Stayed in an interesting B&B which is designed to be a place for reflection and peace.  It was in the middle of a built up area but thanks to triple glazing it was indeed very quiet and relaxing.

Well I’m off for my first Paclitaxel of 9 today.  Chemo nurse who did my bloods has warned I should still expect to feel very tired.  Oh well, I’m just hoping for no nausea again although Larry tongue 😛 has been threatening to make an appearance over the last couple of days but hopefully I’ve sent him packing!

Its great to hear so many of you are done and dusted with chemo -I know there are still further surgeries, radiotherapy and hormones etc... to contend with but good that it’s something else to tick off.  I’ll look forward to those Woo Woos at the end of Nov/beginning of Dec.  Hope you’ll be joining me Reddi! 

Kip I think we should name your thumb!  It obviously isn’t going to let you completely forget about it just yet.  Hope it stops sending you random tingles soon.  

Lisa your hand really does look sore and swollen.  Hope the oncologist can suggest something today to help but fingers crossed the chemo can go ahead. 

LJ It’s frustrating to have to go I’m at the weekend especially when you weren’t warned.

[Kip]

Woo Woos coming up!!!  Ill keep some chilled for those late arrivers.

Lisa your hand looks sooo sore, my tingly thumb now sends random  tingles up my arm!  Nobodh seems worried about and t still wont see Onc until 8th November once surgery over and healed.  Ill keep everything crossed your last chemo gets done on time.

Mimi ...  Your woo woo is being prepared...well done!

LJ what a pain about the weekend slots, does herceptin take long or is it just an injection?  

Keep going ladies. ...  Big hugs

kip

Xx

[LJ]

Fingers crossed for you Lisa!

Sadly my unit only does Herceptin on its own at the weekend so I've requested a move to a Sunday as it's less disruptive over all. That does mean everything is pushed back a week and there's a possibility I might need to request another time for the December one, but I'll have to wait to see what's allocated. I feel really let down no one had said it would be moved to the weekend if that's a non-negotiable.  Now worrying about my radiotherapy timetabling not being able to accommodate my three nights booked in Belgium. 

LJ

[RedRose]

Unfortunately I think 🤔 I may be delayed on my last chemo session when they see the redness on my hand. 🤞🏻 They will get it sorted out and it will still go ahead on the 10th xx

[RedRose]

[RedRose]

[RedRose]

[RedRose]

Congratulations 🎉🍾 to all of you that have completed your final chemo 🥂 xxxx

[RedRose]

Morning ladies. Tablets have been changed and feel relatively normal today. Just the normal tired. Still have red hand and now foot being sensitive too, so will be asking oncologist tomorrow. Hopefully it won’t put back last chemo next Wednesday. As for the cocktails 🍸 lets start with a woo woo! They are lovely and we all deserve a big woo woo for getting through all of this! I know it’s just the end of part of our horrendous journey and we all have our different paths to continue on but you know what I’m proud of us all. We have had our moans (who wouldn’t 🤷‍♀️) but we got though this bit, made brilliant friends and we are 💪🏻 women embarking on the next stage 🥂🍻 xx

[ktk]

Fab Mimi!! It is a great feeling not to have those drugs pumped into you again. Hope the next stage goes well for you. Much love Kxxx

[Mimi78]

Yayy last chemo yesterday! I'm fasting agsom as last time whether it was fasting or reduced dose helped starve off the side effects for a week and then had the fatique but it just meant going to bed earlier at 8pm for 3 nights. I felt mixed emotions about finishing chemo and having my picc line removed as the skin around it had become really sore. So I have lumpectomy booked in for 6th Nov and herceptin until June. Radiotherapy as well. So far the onc and surgeon can no longer feel the lumps so it's promising. But still get anxiety. But that gets better. Best of luck to us all. Xx

[reddi]

@Sally I hope this is indeed your trial -- the preliminary studies on PARP inhibitors are tantalizing. Of course, you might end up in the control arm, so that you aren't actually receiving any additional chemicals, too. I would love to have the chance to try it out, but I suspect I wouldn't qualify, as one side is HER2+ (even if they are still looking for candidates come March/April 2019, when I will be on the other side of chemo, surgery, and rads). Very excited for you.

[SallyG63]

Hi Reddi

Not been given the full details yet of the trial , will get that at next appointment bug a quick Google would suggest it's the one below cos I meet all the criteria.

https://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-trial-to-see-if-olaparib-can-r...

[Kip]

YAYYYY well done KTK and LJ for reaching the end of chemo.   It is a funny feeling isn't it?   I was expecting to be more elated but it was pretty low key in my unit too... although my bestie came along and we counted down the drip machine from 7 seconds down to 0 and got a photo of it as it ended.   It is a nice thought to know that once the SEs are done we don't have to do that again... 

So to the rest of you ladies.... we'll keep doing a Shi style dance and wait for you guys to arrive with us.... I'll take up the role of making cocktails......mmmmmm what shall we start with....

[reddi]

@Lisa Marie Keep us posted on chemo-puppy-arm. I hope either your GP or your oncologist finds something to clear it up asap. 

[reddi]

@SallyG63 Do you know the name of your trial? (If not, no worries -- I'll try to track it down via Cancer Research.) Sounds interesting! And though it means continuing treatment at hospital, you still get to celebrate each milestone along the way, right? While also exploring a way to prevent recurrence. 

[reddi]

Hurrah, ktk & LJ! Can't wait to see everybody crossing the finish line, first of the last infusion, then of the last WBC trough, etc., etc. And can't wait to be joining you all there, too -- though it'll be early December when I finish up, assuming no more delays, and you never know when there might be delays.

In good news, the microbiologist at the hospital gave my oncology team the green-light to go ahead with the next cycle of chemo this Friday, even though I'm only midway through my course of antibiotics for my nasty C diff infection. (Pending good bloods and no reversals in my improving gut function, of course.) I'd basically convinced myself that I'd have another week of delay, so this was very happy news. Off to the dentist in the morning for my six month check-up -- though no hygienist cleaning this time round -- and check of my jaw health. 

I can't remember if I've mentioned that I'm trying a bit of DIY cryotherapy on my hands and feet during the docetaxel infusion to potentially protect them from possible neuropathy and nail damage. It's sort of like cold-capping for your fingers and toes. While there have been multiple studies on cyrotherapy for this purpose, the evidence isn't definitive; however, The Christie in Manchester and several US cancer centers offer it to patients, and as long as the cold packs are covered with fabric -- so not touching the skin directly -- there isn't a downside, if you're able to tolerate the cold. (I won't lie: I found it tough last time.)

In case others are curious: I used some gel-pack socks that I bought from Amazon US (my sister toted them over when she visited in August to save on international P&P) and some foldable flat gel packs that I use for my hands (less than ideal, but they were what I could get/afford -- 4x £2 each from Lidl). I put them on 15 minutes before T begins, switch to a second set at 45 minutes, then keep the second set on for 15 minutes after T ends, for a total of about 90 minutes. For my first cycle, this was logistically easy, as I had Herceptin and Perjeta the day before; not sure how well this will work this coming Friday, when I start at 9:30am with, as I understand it, Herceptin and Perjeta, only getting docetaxel in the afternoon; my chiller bag may not be up to the challenge of keeping the packs nice and cold. But I'm hoping this plus my Polybalm experiment might help guard against these particular side effects.

Too bad I can't apply cryotherapy to my gut bacteria!

[ktk]

Congrats LJ!!! I am TN so no herceptin for me. I have rads starting on the 30th for 18 days and bisphosphonates every six months too. Still I don’t have to go back to work until May if I don’t want to, but not sure I can survive on half pay!!! Kx

[SallyG63]

Yay well done on getting through chemo ladies.

I've seen oncologist today and the plan is for me to do my last three chemos then go on to hormonal tablets and also a clinical trial at Guys for a new drug as I'm high risk for it returning. My oncologist chairs the clinical trials committee at Guys so knows what running. It means attending there regularly for 2 years but I can walk there in about 15 minutes from work so not too bad. Also have to fit the zometa in as well. So much for all the treatment nearly being over. It's never ending.

[LJ]

Snap KTK only I'd been there since 10am and as I was so delayed I had a bit of a wobbly and persuaded them to leave my PICC until my appointment with the IV team on Monday!

Felt strangely deflated as I left the unit, all very low key. Still I've got another 15 Herceptin injections to go so it's not my last time there. Have to phone about those appointments tomorrow as they've moved my day to Saturday without any consultation. With notice I can manage that, but I've got something booked for each of the cycle dates upto Christmas. Ho hum. 

LJ

[ktk]

Just got home from last chemo😁😁😁. Also had Picc line removed😁. Been there since 9 this morning! Kxxx

[cdc1811]

Hi Lisa Marie 

Do you have a chemo hotline number?  I have a chemotherapy treatment diary with details of side effects and when to contact the hotline,  having said that the chemo nurse initially told me the redness on my hands/feet was not chemo related.  She did then follow protocol and rang me very early the following morning after e-mailing the oncologist who told me to come in.  It can be hard to diagnose hand/foot syndrome unless someone knows what they are looking for.  Your photo shows such similar marks to mine in exactly the same place.  The puppy could have exacerbated the situation by putting pressure on your hand.  Have you had any issues with your feet at all- redness, feeling sore?  It’s good that the GP is going to sort something else out for you.  If the augmentin is making you sick that can’t be good!! If it isnt hand/foot and is an infection,  the chemo team will also want to know.  

Sorry you’re having to deal with this on top of everything else and hope you feel better after a day (or more) in bed.  Take Care xxx

[Kip]

Hi Lisa you poor thing, it never rains but it pours hey!  Hope your arm sorts itself with some new meds although i would have thought it more likely to be the chemo than the dog given the problems yoh have had already.  Do uou only have 1 chemo to go?  

Kip

[Shi]

As you can see us oct17 girls were proper 🤪🤪🤪🤪craazzzzeeeee😁😁😁😁we blamed the steroids and text gremlins 💃🏻💃🏻🕺🕺💃🏻💃🏻💃🏻And with lisamaries pink wig you lovely ladies are just as 🤪🤪🤪too 😘😘😘know it’s a bit far away to mention but trying to get a load of us off the threads to do the walk the night in London next year, if any of you fancy it, please let me know and i’ll Keep you posted 😘😘😘💕💕💕✨✨✨✨Shi xx

[RedRose]

Larry 👅 and bum buttering with mirrors?! 🙈🙊🤷‍♀️😂 xxx

[RedRose]

Good afternoon ladies. The doctor I saw has told me he thinks my redness is due to my friends puppy 🐶 catching my hand and breaking the skin on Saturday night and has given me antibiotics called Augmentin to fight any infection from it. Personally I don’t think it is as my hands and arms have had issues on the chemo right from the beginning. I have any oncologist appointment on Friday so will ask him then. The Augmentin does not agree with me and it made me so sick. Throwing up and running to 🚽 and I only took 2 doses. Have stopped the antibiotics now and rang the doctor and they going to sort something else out. So for today I’m in bed watching the Big Bang Theory feeling queasy and nodding xx

[cdc1811]

😭😄😜

[Kip]

Shi - bum buttering with mirrors... the mind boggles!! 

[Shi]

Sorry oct17 thread ❤️❤️Not 16

[Shi]

CDC, I know we had a right thread of text gremlins our oct16 thread, we used to 😂🤣😂🤣with laughter a lot, but we were a 🤪🤪🤪🤪🤪bunch and still are 😁😁😁 but our top moment was meesh and her bum buttering tips with mirrors, that got us all rolling 😂🤣😂🤣😂💕💕💕✨✨✨Shi xx

[cdc1811]

PS The pink wig is fab! Great photo xxx

Shi- Licky penguins 😆 👅 🐧

[cdc1811]

LISA MARIE- your  photo could have been one taken of my hand last week!! .  I had exactly the same marks in the same place- th skin is now peeling from it.  I believe it’s Palmer plantar.  Really good you are going to see  someone to check it out.  The markings usually occur where the skin has pressure applied.  My OH and I think mine arose on my hand in that particular position as it had been resting on a table.  

Let me know now how you get on xxx

[Shi]

Lisa Marie, looking as beautiful as ever 😘😘😘it was licky penguins that buddyfan typo was last year on our thread 😂😂😂🤣😂keep 💪💪💪💪and 💃🏻💃🏻🕺🕺💃🏻💃🏻💃🏻You are all doing amazing, Lisa Marie have you got those louboutins ordered yet 😘😘💕✨✨✨✨✨Shi xx

[Kip]

Go Lisa Marie.. loving the pink wig!  

Sorry to see you have a sore hand... big hugs.!

xxx

[ktk]

Love the pink hair😁😁😁