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June 2018 Chemo Starters

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Re: June 2018 Chemo Starters

ktk - what a lovely happy and positive post - well done.

Good luck with the rads planning - rads is far easier than chemo!!

Christmas is your goal - go for it! xx
ktk
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Re: June 2018 Chemo Starters

Well, with six days to go until my last T, I have finally had a good day!!!! Apart from the fantastic weather, I actually had enough energy to enjoy the day! I popped into school to take the cakes I made for their Macmillan coffee morning, then met a few friends for a long lunch. When everyone else had gone I went out with the host and take took her dog for a walk. I warned her that I would be slow and couldn’t walk far, but we did a really decent up and down walk through the lanes for over an hour! I felt fantastic 😁

So today I have my rads planning meeting. Moving on to the final stage. Hopefully it will be over by Christmas.

Love to all. Kx
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Re: June 2018 Chemo Starters

Oh yes I've still got the scarred veins! Only one arm can be used to give blood and each time the nurse has trouble due to scar tissue - when I say "Oh yes that will be down to last years chemo" - I always receive a sympathetic look and a word of praise. Makes me feel rather special x
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Re: June 2018 Chemo Starters

Honestly ladies it doesn't feel like it at the moment - but this time will quickly pass - you'll go back to eating just what you like (and it'll taste good) before you know it!  It's something I will never take for granted ever again though - I quite often think back to those horrid chemo days and can't believe I've been there and come out the other side - this will be you too.

 

Keep going, keep positive and more importantly keep smiling xx

 

Shi Community Champion
Community Champion

Re: June 2018 Chemo Starters

Lisa Marie ❤️❤️The shark bite looking arm as veins collapse is something a few of us had, get a microwaveable heat pad and rub a bit of ibruprofen on too, my veins are recovering and my last chemo was January, I also still have the red line from the chemo, this is fading. Everyone is different and arms etc recover at different rates. Anyway, I hope you are going to go for some louboutins as your shoes, you blooming deserve them 😘😘💕💕💕✨✨✨Shi xx
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Re: June 2018 Chemo Starters

Yay for lentils and pearl barley. Boo, however, to my constitution, as I actually had oatmeal several times in the lead-up to my D-Day.
Member

Re: June 2018 Chemo Starters

Thanks for the 2 fibers tip, Lisa Marie!That will make my research so much easier.

For my most recent chemo, we used a different hand vein as I'd had problems in the previous cycle. I hope they have a vein whisperer in your chemo unit.
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Re: June 2018 Chemo Starters

P.s got spontaneous bowel moments too on the T. Thought it was just me and ibs related as not eating properly because of not tasting things. Soluble fiber is best for diarrhea where as insoluble fiber is for constipation. There is a list on which fruits and veg contain which xx
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Re: June 2018 Chemo Starters

Hi reddi. Not avoiding a PICC line they said it just not worth it as I only have 1 more cycle of chemo scheduled for 10th October then I start radiation treatment. Wish they had done one from the start though tbh as had nothing but issues since the first chemo with that arm. It’s not worth fitting a line now but as you say I think the veins are collapsing and other issue in my right arm. Hopefully they can be resolved afterwards and are not permanent. As dints and limited moments and bruises not a great thing xx
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Re: June 2018 Chemo Starters

Thanks again, @Jay68. The stuff I've read about the HER2 drugs is very encouraging -- and your story amplifies that. I will go through all sorts of diarrhea to get my 4 rounds of PH. Too bad it has to come with the T. Though of course, it may be the trio that makes it so effective.

The oncologist I saw last night was pretty sure it was chemo-induced, but I had had so many "episodes" in such a short window of time that he wanted me to be admitted overnight if only to get 2 big bags of saline in me. Bloods are good -- for once, I wasn't neutropenic when presenting with worrying symptoms -- so I am getting an Rx for codeine and prn loperamide. I hate codeine, but it seems to be working thus far. Plus, because it has been prescribed, I learned that my ALT liver enzyme levels have fully resolved.

Dietician advised that I cut back on fruit, veg, and fiber. Root veg, especially boiled or parboiled and roasted, should be okay. Apples with skin removed (to reduce fiber) are okay, too. It's going to be a big adjustment in our diet, but at least the autumn is upon us: there will be stew. (Though I'll need to research fiber levels in my 2 fave stew bases -- pearl barley and lentils.)

Just waiting for the pharmacy to delivery my drugs and then I am discharged home. Hurrah!

@Lisa Marie So hard to know what needs tending to between appointments. I think you said you were trying to avoid a PICC line -- is that right? It might be that the vein has collapsed and they'll need to use another spot or do a PICC for you. If the bruising clears before your next appointment, I'd say show the photo to your doctor, just in case.
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Re: June 2018 Chemo Starters

Hi ladies

Looks like nearly every one has been in the wars. My hair has started to really thin on top the last week but I'm sticking with the cold cap cos it promotes regrowth and after 12 rounds seems silly to give it up for the last 4. I do have a bit of regrowth where it's thinner on top and I can still do a comb over Smiley Happy

A word of caution on the paclitaxel. Although it's less harsh there may still be diarrhoea / feet issues. I have diarrhoea pretty much daily although diabetes meds and clexane injections contribute to that. It's not all day every day though. Tends to be 1st thing then it passes. I have developed very sore feet in the last week as well which I'm having to moistu rise 2 or 3 times a day. The skin is also peeling off them and they are pretty red in areas. I'll mention it to my oncologist when I see him next week. I sleep with them sticking out the bed because they are most comfortable when they are cool. I need to buy an extra pair of slippers to wear at work as well. I've been wearing my sketchers which are the most comfortable shoes I hae but they still ache.
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Re: June 2018 Chemo Starters

reddi - it would appear you're having pretty much the same order of treatment as I had last year.  I started with the chemo as although the lump I had in my right breast was only 5mm I had a large area of DCIS (high grade) which mean't there was no alternative but to have a mastectomy.  I also had one lymph node showing signs of cancer so I had a complete removal of all nodes.  When I got my pathology report following surgery I was delighted to discover all tissue from the breast and 17 nodes removed showed no signs of cancer left - ie it had completely gone!  the chemo with the PH had well and truly obliterated it!  I still went on to have 15 bouts of radiotherapy - concentrating on my chest wall and upper clavicle area.

 

Unfortunately the diarrhea will be a side effect of the chemo together with the PH - A&E do tend to "over react" which is better than ignoring whereas the onc will be much more knowledgeable and will be able to prescribe you something to take if the situation begins to happen next time.  I would say you do tend to learn the schedule of events....!  Just keep well away from the person throwing up - you really don't want any nasty infections to delay your treatments. 

 

Hopefully you'll be back home very soon - take care x

 

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Re: June 2018 Chemo Starters

They have checked the arm and hand out just before I had the chemo. When just swollen and red marks on fingers. Said my be phlebitis but more than likely down to chemo treatment effects on my veins. Had Doppler scans and got steroid and pain creams. Not shown them bruised bit on hand as that I presuming is from the cannula in the vein but spred a little further down hand xx
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Re: June 2018 Chemo Starters

@cdc Relish the switch to paclitaxel! I was half hoping my diarrhea was bad enough that they'd switch me, too. But no.

Instead, I'll be getting a prescription for codeine and something else to back me up (now and in future cycles). Juggling the fight against constipation and then the switch to encouraging (pseudo) constipation is gonna be fun! Man, I do not like docetaxel.
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Re: June 2018 Chemo Starters

@Lisa Marie Have you had your oncologist or chemo hotline team take a look at your hand? I think you should. Even if it turns out to be a minor side effect, it will ease your mind. But that could be something requiring medical attention.
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Re: June 2018 Chemo Starters

Good afternoon ladies. Doing ok today after managing a good nights sleep. Insomnia and muscle aches have not been conducive for a restful night. Feels like I’m doing a Irish jig in my sleep with restless legs. Arm still swollen and hand swollen and bruised still be manageable. Right arm feels so weak. Goodness ladies what have you all been doing, just catching up now and seems your all in hospital or suffering badly with side effects xx
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Re: June 2018 Chemo Starters

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Re: June 2018 Chemo Starters

Hi all

Sorry to hear you were still suffering through the night Reddi. Hope you are still diarrhoea free this morning and that you’ll be out soon.

Georgie G I sincerely hope your platelets are ok and you finally get home 🤞

Hope the fluconazole works for you Kip and you can avoid the lardy mouth. Sitting by a Wood burning stove sounds so cosy. I know what you mean about the hot flushes though!

Thanks for the advice Jay68 and for sharing your experiences.

How are you doing today Lisa Marie?

LJ it’s frustrating about the cold cap not fitting exactly right but I do hope you like your Pixie cut.

I’ve had a positive day. I managed to see my ‘helpful’ oncologist. I had so many questions about my new chemo regime and also wanted to see if I could change the day I’ll be having it. He was brilliant -he explained that the Packlitaxel should be much easier on my body and he’s happy I’m going onto it as it’s his preferred regime. He said my reaction to the docetaxel was severe as it happened so soon after my first dose of T, I was warned my skin might start peeling off but thought nothing of it but I now have an area between my thumb and forefinger where it’s doing exactly that- thankfully only a centimetre round at the moment and hoping it won’t get worse. I should be starting the Packlitaxel next Friday (bloods on Thursday) now but all the computers were down at the appointments desk and the chemo scheduling department need an email from my BCN confirming the new days before they can fit me in. I will be very relieved when I get confirmation that it’s all going ahead. Also I don’t need to see the oncologist every week, just every 3 weeks as basically having the P weekly means they just divide the dose by 3 and they only need to see me once I’ve had the full 100%.

As an aside, I know some of you are TN and we learned today that my onc is a leading expert in the field and is presenting some new research into treatments at a European convention next month. I’ll see if I can find anything out next time I see him.

Feeling so much brighter and hopeful today thank goodness. The thought of 9 more cycles of chemo was really getting me down but I now know it’s for the best. I will see my GP on Tuesday to get a referral to the Royal Marsden as I’ve had two different people recommending the surgeons there. Hope they’ll be able to see me and we can plan for surgery in the New Year.

Hugs to everyone xxx

Ps will have to take a look at the moon tonight!
Kip
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Re: June 2018 Chemo Starters

Reddi, Yes hasn't the moon been amazing, would love to have got a great photo of it, but my old camera just doesn't do it justice.
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Re: June 2018 Chemo Starters

@Kip 8 weeks! Hilarious. A woodburning stove sounds so cozy. I would love to have one if we ever flee our flat in London. But for today, enjoy the lovely, sunny day. Gorgeous here.

If you didn't catch the moon last night, I suggest trying to do so this evening. Gloriously beautiful. My east-facing room had an amazing view in early evening, and then quite a brilliant sunrise.
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Re: June 2018 Chemo Starters

@Jay68 I have not had surgery yet -- other than bilateral SLNB, that is. Really hoping the PH portion of TPH shrinks up the HER2+ side, though I may still be looking at mastectomy for it. Other side is HER2- and mucinous, so should be lumpectomy.

Not sure that I will be released today. Had diarrhea overnight (and the 4am bout required calling the nurse for gown change and hazmat clean-up. UGH. On the brighter side, it's been 3 hours since my last episode, so maybe things are settling down.

Feel bad for my neighbors, who would have heard it all if they were aeake overnight. I say this as there is someone nearby who was up all night vomiting. I feel lucky in comparison.
Kip
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Re: June 2018 Chemo Starters

Hi

Georgie Gee - sorry to hear you haven't managed to escape you but hopefully you will soon and good news the infection has gone. 

Reddi - now you are joining the Casa NHS sleepover too.. oh dear, hope you got those 8 hours sleep in the end and are now rehydrated.  Thankfully I have not had the diarrohea throughout chemo, just get constipation for first week on the T (steroids I think) so lots of lactulose for me.  

I'm now on day 4 of last cycle of T and the mouth is starting to get lardy, so onto Fluconazole today to combat that hopefully, although my GP managed to prescribe me 8 weeks worth yesterday instead of 10 days.. its either all or nothing with them!  I've had 2 injections so far, and thats going ok, although still dislike doing it and still having the useless nights sleep, last steroids tomorrow though so probably have the downer days at the weekend too.   I've managed to track down my ONC nurse too and she can't arrange the planning for rads until after surgery, results and checkup (even though the surgeon asked me to get it sorted now) so will probably find my rads fall over Xmas too!  Grrrrr..

Another beautiful sunny day here in Suffolk, although I think it may be the last.  Although I am looking forward to some cooler evenings as suffering hot flushes too, and also treated ourselves to a lovely woodburner stove and can't wait to get it burning, though with the hot flushes I might regret it and have to have the window open too! 

Take care all

Kip\

xxx

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Re: June 2018 Chemo Starters

Reddi - hope you slept well.

 

Just for reassurance, the diarrhea was always a bigger problem for me during the 2nd/3rd week after treatment, it would always be OK again in time for the next treatment!  Strangely enough you get used to the timescale of symptoms!  

 

Good luck for the remainder of your treatments, have you had any operation yet?

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Re: June 2018 Chemo Starters

First TPH was 13 Sep (PH) and 14 Sep (T). Day 13 for me of T. I was so excited to be nearly out of my WBC trough, too, without febrile neutropenia (FEC 1) or mystery swelling, pain, and redness in my cannula arm (cellulitis? they don't know; FEC 3) while, of course, neutropenic. C'est la vie.

Now really going to sleep!
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Re: June 2018 Chemo Starters

Hi reddi - no worries - good to pass on experiences! When did you have your first TPH? I had 3 EC before the TPH too. Keep up with the water - I still aim to drink 2 litres (plus normal drinks) a day - I feel so much better for it too!

Glad to hear your obs are good and can get 8 hours sleep - good luck and night night x
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Re: June 2018 Chemo Starters

Thanks, Jay68! I'm on TPH, too, and this is my first cycle post 3 of FEC. I have been drinking at least 2 liters of water a day, plus tea, juice, etc., on top. Strangely, I have had no mouth sore or slime issues and very minimal taste issues (really taste the metal of utensils) -- and have been eating my usual diet as a result, which involves salads and soup and falafel and baked salmon and yogurt and fruit and roasted and raw veg (all scrubbed very thoroughly with anything the least bit suspect thrown out), plus the occasional biscuit or slice of rye bread. And as it happens, yesterday was my first unhealthy food day on T: well-done cheeseburger with sauteed onions and mushrooms. I'd been craving one for 3 weeks, but I didn't enjoy it at all, even though it tasted like a cheeseburger should taste. Probably shifted too far in the other direction. Oh, well.

Guess I'll know for future cycles that this is likely to happen.

Night night, all -- had good obs and hooked up to an 8-hour saline bag, so time for me to sleep.
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Re: June 2018 Chemo Starters

I just see you're suffering from diarrhea whilst on T - I too suffered with this on each of the 4 cycles of T - (I also had Herceptin and Pertuzumab) the H & P also caused severe wind - so with the whole concoction I did end up in A&E on my 1st cycle as I wanted to be sure it wasn't any kind of infection.  As I say, mine wasn't an infection and unfortunately it was the same for the final 3 cycles.

 

I can only suggest eating plain - unhealthy carbo foods.  Don't try anything healthy!  Drink plenty of water (awful as water tastes) - you need to keep your fluids up!  Also a little bit of flat cola is good - it's brilliant for replacing salts/sugars.  

 

Good luck and stay strong - it's horrid but it all goes back to normal once the chemo is done!  I finished chemo last August and now it's all just a horrid memory! xx

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Re: June 2018 Chemo Starters

Hurrah, Georgie! Those super-special antibiotics are amazing. Fingers crossed for your platelets.
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Re: June 2018 Chemo Starters

Hello all,

 

A mixed day here at the hospital! 

 

My antibiotics have ceased, as the infection is gone. 😍😍😍

 

Went for a chest scan today and they found a blood clot on my lungs. 😫

 

So in a nutshell, they will start blood thinning drugs later this evening, and test blood again tomorrow.  If the platelets are ok, I can go home 😃. 

 

All a bit of a whirlwind if I'm honest!!

 

chemo has been delayed for a week, which I am very pleased about..... I need to get my breath back!! 

 

Love to all! 

 

Georgie Gee ❤️

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Re: June 2018 Chemo Starters

Hospital sleepover for me! Right now to replenish fluids; still waiting on results of bloodwork. Hopefully, the bloods will show no infection, and I'll be home tomorrow.
LJ
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Re: June 2018 Chemo Starters

Oh Reddi, I'm so sorry to hear that!  Fingers crossed they sort you out quickly and don't invite you for a sleepover. 

 

I consider myself fortunate that despite the frequency of my bowel movements on T they in no way constitute diarrhoea otherwise I'd have barely been at home!

 

Day 14 of T2 here and mostly things are back to normal. Still can't digest plain water or hard salad veg, but otherwise ok. 

 

My big angst is my hair. It's become apparent that I've had a couple of cycles recently where the cold cap hasn't been fitted exactly and I'm getting some extreme thinning on the top of my head which is devastating me. Think old man combover.  Going to the hairdresser tomorrow and hope she can work some magic, but I'm preparing myself for a pixie cut. Ho hum. 

 

LJ

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Re: June 2018 Chemo Starters

Diarrhea. Now no. 7 of the day. Pretty much extreme end of Bristol Stool chart -- and as I haven't got an appetite, my lunch of arrowroot biscuits and Ryvita thins are not yet in the pipeline, so majority stomach acid right now.
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Re: June 2018 Chemo Starters

Sorry to hear that Reddi. What’s up? Xxx
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Re: June 2018 Chemo Starters

No. 5 is the charm. Spending the afternoon at A&E.
ktk
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Re: June 2018 Chemo Starters

My chemo nurse said that my diarrhoea last time was due to constipation backup, but I knew it wasn’t. She then told me off for not ringing the hotline! Hope you are ok. Kx
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Re: June 2018 Chemo Starters

For anyone wanting a 💕 shaped pillow, there is a lovely group called Jen's Friends that will provide them for the cost of postage. You can request a pillow or two via their Facebook page: https://www.facebook.com/jensfriendsmastectomypillow.

Mine are very pretty (no choice of color/pattern -- but they sent me a matched pair), and they have been a godsend post SLNB; I know I will use them.bunches post surgery.

Indeed, I'm using them.now to prop myself in bed, as I hydrate and await 4th bout of diarrhea this morning before calling chemo hotline. I feel like crap (pun wasn't intended, but there 'tis), but temp is 36.5 and there is a small chance it's the lactulose prescribed for my "constipation."
ktk
Member

Re: June 2018 Chemo Starters

Hi Kip I am feeling loads better. Got up , went shopping, made chicken noodle soup 😋, there! However, it is still a bit uncomfortable when I swallow and I can’t breathe deeply. And I have a bit of diarrhoea every day. ☹️

I was given a ❤️ Shaped pillow with the drain bags after surgery. It was really comfortable to put under my pit in bed. Interestingly, although I don’t think it applied pressure, the armpit scar is much neater and less visible than the breast ones.

Hope everyone is feeling ok today. Kxx
Kip
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Re: June 2018 Chemo Starters

Hi Everyone, hope you are all hanging on in there.  

Shi - I love the thought of gold hot pants.. although don't think I would be rocking the look but the thought made me smile, and as for the music, thats just great!   I can't even manage to type a response without having to edit it 100 times, let alone upload anything!   You posts really do keep my going and all your little tips too.

CDC - Can't believe you are still having to chase ONCS and appointments too, how frustrating but enjoy that extra SE free week.  Hope you get it all sorted soon and can get the better hospital/ONCs etc.

KTK - how are you feeling now, any improvement with the swallowing?

Lisa Marie - hows things with you today?   Hows the arms/hands doing, my thumbs are so dry at the moment, need lots of moisturising but the arm is ok so far, no pain from the chemo as yet.

GeorgieGee - big hi to you, hope you are bearing up in the old hospital!

Embolorry - hows the tats?

Anyone else I've missed off the list... have a good day!


Day 3 of chemo and still feeling ok, tired as the steroids are playing their usual game, but now back to 4 a day for 3 days and then off them - hopefully for ever more!   I have the weirdest dreams when I do get a bit of sleep... last night dropped off then could see a large cruise ship (wishful thinking!) then it seemed like somebody called out "Jake".. which is weird because the only Jake I know is my old cat which died quite a few years ago.. freaked me out a bit and woke me up.. bloomin drugs.   Mouth still ok today, just had a call from my GP who was asking why the hospital didn't supply me with Fluconozole as their letter said they would be, I explained that had forgotten it and he didn't seem surprised but is sorting it today for me, he also recommended sucking on Vit C tabs (the fizzy ones you disolve in water) as they help cut through the lardie mouth feeling and help with the thrush/ulcers.

 

Meant to mention the other day... my surgeon told me a tip for post surgery healing and scars under armpit area.... she said roll up a clean pair of socks and keep them under your arm pit pressing down on the scar area as this helps with drainage and flattening the scar tissue too.. if you have a small Heart shape pillow you can use that and keep that pressed under the armpit area..  I have the pillows but hadn't thought about the socks, so might try that after node clearance.  I wish all the professionals gave the same advice, I get different things everytime. 

 

Love

Kip

xx

 

 

 

Shi Community Champion
Community Champion

Re: June 2018 Chemo Starters

CDC 😘😘A’s is oct17 ladies said to each other, we’ve got hold of each other’s gold hot pants on here as we were spinning around on chemo 💃🏻💃🏻🕺🕺💃🏻💃🏻💃🏻We were a proper dancing thread and had a tune a day that do Karana used to upload 🤣😂🤣😂🤣and by the 6th one it felt like we were doing the double Dutch like in the Malcolm mcclaren video, you just gotta keep going 💪💪💪💪you are all strong and amazing, keep focused 😘😘💕💕✨✨✨Shi xx
Shi Community Champion
Community Champion

Re: June 2018 Chemo Starters

Sue, I’ve answered you on July thread 💕💕✨✨Shi xx
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Re: June 2018 Chemo Starters

Hello ladies

Does anyone have any tips on what I can use on my scalp - it's quite dry at the moment. Wasn't sure if to use face moisturiser or body moisturiser or if there is something out there more suitable? I've read about olive oil or almond oil - has anyone else used either of these?

Thanks in anticipation,

Sue
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Re: June 2018 Chemo Starters

 
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Re: June 2018 Chemo Starters

Oh no Georgie G. You poor thing. So sorry you’re going have to stay in for a while but as others have said, thank goodness the medical team now know what they are dealing with and you are receiving the appropriate drugs. Hope you’re on the mend very, very soon xxx

Sorry you’re still having to chase things up Kip. We could all certainly do without the added hassle of having to do the leg work when things aren’t as organised as they should be. I’ve heard nothing with regards to trying to change the day of my onc appointments and chemo. I’m starting to wonder if my BCN is ignoring me! Sure she’s just busy but I just want to get on with my new chemo regimen. I have heard more good things with regards to the surgical team at the Royal Marsden so will definitely be asking my GP to send them an e-referral. Interesting to hear about the nails. Mine are currently hidden under dark navy nail polish so not sure what’s going on underneath.
I hope you manage to get some sleep tonight

Reddi thanks so much for sharing your experiences. I really appreciate your honesty. It was very moving to read. It’s also helpful to be reminded that children can be remarkably resilient. B****y BC will not break our bonds and may even make them stronger.

Em I’m full of admiration for you going through this as a single parent, such incredible strength and determination, I hope you are feeling a bit brighter today. The fatigue is something else isn’t it? Also the accompanying aches and pains. Hope the tattooing went ok. Is it just a small dot so they can line up the machine? I think my Mum mentioned something about it when she had her radiotherapy last year.

Ktk Definitely sounds as though the docetaxel isn’t agreeing with you. Not surprised you’re feeling sorry for yourself. Not being able to swallow without pain is horrible. Did you manage some soup? Did you ring the hotline? Hope you can get something to help with the SEs.

Really lovely your friend is holding a MacMillan coffee morning in your honour Lisa Marie. I’m sure it will be a lovely event. You’ll have to post some photos of you in your pink wig! I remember Stephanie from Lazy town too.

Shi you are always so positive and encouraging, love seeing your posts and you are an expert in Emojiis!!

I’m doing ok. Thoroughly fed up that I won’t finish chemo till December now but I’m looking forward to next week. I would have been having my 2nd docetaxel but I get a week free of anything before I start on the new drug so I’m hoping to feel completely SE free for a bit. My feet are so much better but my hands keep turning bright red and they are throbbing a bit at the momentt Not sure how I’m meant to‘avoid using utensils’ as is suggested. It’s pretty impossible in day to day life!

Sally how are you?

Take Care everyone. Sending hugs to all xxx
Kip
Member

Re: June 2018 Chemo Starters

OH dear Georgie, but at least you know what it is.  Isolation room was better than ward I found though and had own bathroom.   My antibiotics were pumped in by the nurses too, every 4 hours although they couldn;t find an infection!  Did have a bad mouth/throat though.

Take care, I'm sure once the antib's get in the system you'll be home before you know it.  Get some good books brought in.  Do your visitors have to wear aprons and gloves now too?  Mine did, so funny watching them threw the door trying to pot on an apron, they always seemd to get them on unfolded.. Although my OH and kids didn;t have to wear any gloves or apron as they "had come from my home environment" which I couldn't understand as they had walked through a car park and through a bloomin' hospital to get to me!  Weird.

Take care

Kip

xx

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Re: June 2018 Chemo Starters

@Georgie Oh, no, the dreaded MRSA. Not a happy bunny at all. I hope the MRSA gets knocked out by your new super-special antibiotics. Thinking of you.

Kip
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Re: June 2018 Chemo Starters

Wow Reddi, I have the white lines without ridges and now know the names... you are so informative about all this stuff!   It is incredible to have a visual guide as to how much chemo is going in isn't it, its my new thing to bore my family with.. after the fluffy head hair that is.  Is anyone developing fluff on their face too.. not a good look but I think I read it does go eventually, I just don't want it giving my head hair a run for its money or I could be joining the Greatest Showman!

KTK - you sound so like me, I put off ringing the hotline in the fear they'll call me in, then when I do ring I usually feel so much relief I wish I'd done it sooner.. apart from the time they took me in.. grrrr!

Lisa Marie - the Macmillan coffee evening sounds fab, my niece did one for me at the pub she works at, felt so honoured bless her!  Enjoy that little bit of Rose, why not, as you said we deserve to enjoy the little things in life!   I do think you are making the right decision to leave those big things to after treatment and then address them, too much to decide right now, need to get yourself feeling better, think of the wedding and then decide.  And bought a tear to my eye to read about your stepchildren, they are very lucky to have you by the sounds of things!  And as for giving OH and out... very brave too but I get that as well!  

T 3 is ok so far, only day 2 though so usually get the tongue going awol about Friday, have just had to ring the GP to request Fluconazole as they forgot to give it to me at the hospital, I did ask and she said I would have it but then it didn't turn up!  I like to have "just in case" and started taking it as soon as the tongue got furry last time and it didn't last half as long and no ulcers etc so daren't risk not having in the house.

Also got to chase the ONC nurse again as they want to get my planning for RADS rolling so that these happen as soon as possible after surgery to try to ensure I can get it all done without Xmas getting in the middle... was told to ask at chemo but the nurses said they couldn't do anything about it.. so more chasing around today I think.

GeorgieGee - hope you are feeling ok today and may be getting out soon?  

CDC - how are you feeling today?

And anyone else I've forgotten.. have a good day, be strong.. big hugs...

Kip

xx

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Re: June 2018 Chemo Starters

Morning all,

 

The doctors came to my bedside with aprons on yesterday and told me that the mystery blood causing the query, has tested positive for MRSA.

 

This is of course means that for the moment at least, I need to settle in and call my isolation room home.

I was really tearful yesterday but coming coming to terms with it today. The antibiotics for the sepsis were not covering the MRSA, hence the extra one, which is pumped in IV by the nurses once a day, like some of the chemo drugs are. They think it may be in my mouth / throat / downwards.... may have some tests.

 

Georgie Gee is not a happy bunny 😷

Member

Re: June 2018 Chemo Starters

Y'all are so lovely. But I'm not brave to share -- it's just my life. My hesitation about sharing was my uncertainty about whether sharing would give a little bit of comfort and ease -- or instead set off different emotions. Comfort and ease were my intention, but human emotions aren't entirely predictable.

@Kip I have the lines on my nails starting from FEC. A friend whose father had chemo mentioned that he'd had them, so I have been on the lookout. I believe mine are Mees lines -- white bands without apparent ridges; Beau lines have ridges, too. I find them fascinating, a little badge of what my body's going through, and one far more decorative than my pale scalp!

ktk
Member

Re: June 2018 Chemo Starters

Thanks Lisa. Feeling better today so I think I’ll have a go at the soup. Said to OH last night that I would ring chemo unit today, which is a guaranteed cure. Really should have rung on Sunday but was scared they would tell me to come in!! It sounds like your OH and stepchildren love you very much. How lucky are you to have them in your life!! Kxx