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June 2018 Chemo Starters

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Re: June 2018 Chemo Starters

Oh No Georgie Gee. What a morning! Glad that the PICC line was redressed and hopefully you don’t have an infection. Wonder what the white fluid was. Antibacterial I presume. I know a broken car is a relatively minor complication in the grand scheme of things but it really isn’t what you need at the moment. You’re insurance company sound helpful. Hope it gets fixed quickly. Also it’s a shock when something like that happens so please take it easy today. I’m now a Friday chemo girl so will be thinking of you tomorrow. Just off for my blood test today. I’ve been very lucky that I’ve not had a problem with my bloods so far so should be fine today. Just don’t like having to wait around, The unit is extremely short staffed and I usually have to wait an hour or two to be seen for what a 5 minute procedure!

Kip Hope you’ve been geeking brighter. Down days really are inevektqble aren’t they? on my consent form for chemo there were three boxes. My onc told me to watch her as she ticked the one for ‘curative’ and explained that it was not neo-adjuvant or palliative which were the other choices. It was a bit shocking to see the latter on the form. She did expain that radiotherapy targets a specific area and the chemo is for the whole body to make sure there are no stray cells anywhere else. I think it’s also to prevent recurrence. I think having synchronous, bilateral BC comlpicates everything a little as they really can’t predict the benefit of chemo or my risk of recurrence in the way they can with one. Have you found that Reddi? I think they’re opting for a ‘belt and braces’ approach for me too and I was told my bilateral status, size of tumour I’m the right (52m) and nodal involvement, albeit micromerastasis were all indicators that I would benefit from chemo. From what I understand the prognosis is practically the same as the ‘worst’ case scenario tumour. Has anyone been given a lifetime risk of recurrence? I’m definitely going to check at my next meeting as I’ve not been given a number, just know that I have a familial high risk despite being BRcA and PALB negative. My cousin has had to have a re-excision so I’m just hoping she gets better news than I did and gets clear margins. I’m still waiting to hear if the Marsden are willing to take on my case and do my mastectomy and Immediate Tummy DIEP in the new year.

LJ I’m glad you’re GP is supportive and has signed you off for at least a month. Our bodies really have been through it.

I’m doing better on the Packlitaxel but the facial flushing and fatigue is a pain, Just so relieved to have no nausea. I only took the anti sickness meds for one day and haven’t needed them since. Larry tongue keeps threatening to make an appearance but I’ve beaten him so far. How is tingly Kip??

Have a good day everyone.

Clare xx

Oh O meant to say- my hospital doesn’t perform PR status tests. My Mums hospital did. How many of you had your Pr tested and what impact does it have on your treatment? Just wondering if I should ask the hospital, to do mine or I could ask them at the Marsden as I think they do test for it.
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Re: June 2018 Chemo Starters

Hi everyone, 

 

I start on Herceptin tomorrow, and T (docetaxol) on Friday..... 

 

I wish I didn't even know the H word or the T word.... just thinking, this time last year, most of us didn't. 

 

Had a little wobble this morning when I thought I saw some pus around the picc line entry point.  The chemo unit had me come in to have it looked at, dressing changed and swabbed the white fluid?  They said they didn't think it looked like an infection, so I am going ahead with treatment as planned.  

 

Didn't help that on the way in to the hospital, someone backed their taxi into the side of my car.  I got all the drivers details, took a photo of his car and mine, and even asked him to sign a statement to say it was his fault....... He was really apologetic, but then tried to say he could ask a mate to fix it if I didn't use my insurance company etc. No way!!!!!  Not too much damage, but it will need fixing properly.  Insurance company was amazing. They are arranging all the repairs and supplying a courtesy car.  I have told them my 'situation', and that I was not sure I would be home when they pick up my car and bring the hire car. 

Could have done without this, but in a funny sort of way, this just doesn't matter; with what we are going through with treatment, which is essentially saving our lives, a broken car seems like a minor complication.  

 

Goodnight everyone.

Georgie x 

Kip Community Champion
Community Champion

Re: June 2018 Chemo Starters

Hi ladies, thanks for the replies.   All very interesting isn't it.... so looks like tamoxofen will be the way forward for me I guess.   I've had sweats and mood swings but can't tell if its hormones or chemo or both! And JacB.. crikey I hadn't thought about being treated for a cure or not..... that's worrying.  They keep saying to me "Belts and Braces approach" so hopefully that's good??  I must ask more questions next time... but I am always so glad to get out of the there I forget half of them... I'll write a list for 8th November appt!

Kip

x

Member

Re: June 2018 Chemo Starters

Hi all
Just catching up on the hormone therapy, calcium and wee messages!
I just realised I’ve also only had 1 period since starting chemo but mine were regular before I started so I suspect that’s why I’ve been told I’ll be going on to tamoxifen for 10 years. However, I spoke to a friend today and chemo put her into early menopause. It’s all very confusing. Kip, I would say just take things one day at a time and as you say the surgery is the next thing to concentrate on. I do understand you being nervous even though you’ve had surgery before. I’m feeling this way even though my surgery is some way off. I suppose I had no idea what to expect last time and this time I do. It’s daunting. I suppose it’s natural to have some anxiety before any surgery but I’m sure we’ll both be fine!! So sorry to hear your daughter has been worrying. It’s good she was able to talk to you though. I am extra sensitive to anything about cancer on tv, posters on bus stops and also have an issue with charity shops etc... seems to be so many fundraising ads at the moment which is great but in some ways I just don’t want to be reminded.

My Mum is on Letrozole and also has to take calcium tablets but she has arthritis and is 81 so I imagine she takes them to increase bone strength. I will ask next time I speak to her. I take Vitamin D because I’m mainly vegetarian but the nutritionist I saw told me I won’t be able to get a high enough dose from a shop and my Dr would have to prescribe it. Haven’t seen if they will or not yet.

Ktk - I’ve had an issue with the volume of wee I’m producing and how often I go! Not sure if it’s just because I’m drinking such a lot. I had prolapse surgery 6 years ago so no issues with leaking but I have found that having thought I’d finished I get up sometimes and more comes out! Just another wonderful thing about chemo that no one forewarned me of! JaqB good to hear the control should return at some point.

Take care everyone x
LJ
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Re: June 2018 Chemo Starters

I'm another one waiting to find out about hormone therapy - I think I am 4/8 ER+, I remember I'm only moderately receptive. My menopausal status is a bit of a mystery as I had a Mirena coil in until just before surgery.  I've had one period since then, but it's not clear whether that was reaction to the coil coming out or what. I'm deffo having warmer moments though! I guess we'll talk about all if that at my next oncologist appt at the end of the month.  Am apprehensive about the effects of hormone therapy though, especially weight gain, I can do that on my own without any help!

 

Saw my GP today. She has signed me off for a month for post-chemo recovery, with the instruction that it's no problem to extend if I need more time or radiotherapy is proving too onerous. 

 

LJ

Member

Re: June 2018 Chemo Starters

Hi Kip
I’ve just come out of a meeting with my oncologist and I asked the question about tamoxifen or letrozole. She said that as I was still menstruating when I began treatment I will have tamoxifen for an extended period of 10 years. Like you I have had just one period since starting and have gone full blown into sweats, aches and mood swings. And also (this falls into the TMI category)! vaginal dryness. Oh joy, oh bliss 😊. She also said we are still treating me for a cure, tbh I hadn’t considered that they may not be 😬 I’m 55 this month, her2 + er+ 8/8 pr-
Jacq X
Kip Community Champion
Community Champion

Re: June 2018 Chemo Starters

Hmmm, its strange isn't what we get told at different hospitals.   I haven't actually had any kind of lengthy discussion regarding hormone bit, all I know is I am pre-menopause (or was before chemo) and that I am ER+ 8/8 so will have to take hormones (they mentioned Tamoxofen).  I did have a bone scan before chemo but not sure if thats the same kind of scan or not?   I guess once I have had the next surgery and got all clear from that they may talk about it, not sure if that happens before or after rads?   Its just one thing after another to get your head around isn't it.  I have wondered how they assess whether or not I am post or pre menopause now chemo has been done, as I have only had 1 period since beginning chemo so not sure what that means, have they stopped for good or just during chemo?   I can't begin to think about it all as now getting my mind ready for surgery, and actually getting a bit scared although I've already had one lot so shouldn't be but....

Also had a lovely chat with my daughter last night and out of the blue she told me she worries about me and it makes her sad but she doesn't tell me for fear of upsetting me.  Well that set me off...I hate the fact the children are worrying but I know its normal.  She said she wants everyting to be back how it used to be (cor me too I thought) and she hates seeing me ill.  I tried to reassure her that I am feeling fine now but its hard when she knows I still have other treatments to go.  I just hope the rads are straight forward and she can see I am coping.   Just as I had got her smiling again... on the TV was a little girl who had lost her Mummy when she was 3 due to Breast Cancer... BANG... I could see my daughter deflate and look at me with fear.  What on earth do you say?   I did my best to reasssure her but crikey its hard.   Its really deflated me to be honest too, went to bed worrying again.   Just seems you can't escape BC wherever you go, today a charity bag came through the door... yes for Breast Cancer!   One of those down days I guess, but am picking myself up and carrying on....  its all we can do isn't it.

Take care all

Kip

xx

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Re: June 2018 Chemo Starters

@ktk Hmmm. No bone scan. My theory falls apart. I have half assumed that drug-induced menopause might be harder on the bones -- or perhaps earlier menopause is the issue. Time to do some research!
ktk
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Re: June 2018 Chemo Starters

I didn’t have a bone scan btw.
ktk
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Re: June 2018 Chemo Starters

Hi Reddi perhaps you get the bisphosphonates because of chemo induced menopause? After all of this the last thing we need is crumbling bones!!🤣
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Re: June 2018 Chemo Starters

@ktk I am 47 and pre menopause and my plan currently has bisphosphonates in it -- though I am not yet at that stage of treatment, and we haven't yet discussed it in detail. Indeed, I have not even had a bone scan as yet. My guess -- and it is a guess right now -- is that the bisphosphonates are related to length of hormone therapy they are considering for me. They have been talking about 10 years in Zoladex. I suppose I should mosey over to the hormone therapy boards to gather more info...
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Re: June 2018 Chemo Starters

Yes ktk, I am 63, and had a DEXA scan to assess my bones before starting the letrozole? The scan showed, apparently, that I am edging towards the dodgy side of bone thinning - but I tend to be very sceptical by nature, and question things a lot - I had quite a debate with myself over the letrozole, and decided I'd give it a go, as it was stoppable if I decided to change my mind. I have found that the oncologist I have met twice is a touch humourless, and if I were of a much more sensitive nature, she would give me the heebie-jeebies!! I put it down to what the nurse said - that a high percentage of people refuse what oncologists offer, and maybe that again is down to 'the older woman' and choice of quality of life ( my take on it, personally ). This is purely my take on the whole matter and I in no way mean to generalise about other peoples'opinions.
ktk
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Re: June 2018 Chemo Starters

I think it is age/menopause related Kip. I am post menopause (57) so I guess the risk of osteoporosis is greater and warrants the bisphosphonates and vit D. But what do I know?!🤣
Kip Community Champion
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Re: June 2018 Chemo Starters

What an interesting thread, ive not had or been told anything about vit d or anything else but then i dont get told much it would seem.  Interesting to note!

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Re: June 2018 Chemo Starters

I'm not on chemo, but on letrozole and AdCal - just wanted to add my twopenceworth re: bisphoshponates.

I'm post menopausal, and before the oncologist had a chance to give me a resume, the lovely breast radiologist talked about drug regimes, and mentioned the contraindication of bisphosphonates and possible jaw necrosis!!  That was enough to put the fear of god in me, as I weighed up bone thinning (I'm borderline) against my teeth falling out, not having the best of teeth in the first place!!  I am afraid the oncologist only got a 1 out of 3 with me, as I refused them, and also the prospect of chemo, as again I was borderline for that. ( As I left that initial appointment, the specialist oncology nurse spoke with me, just to double check my opinions and advise - and I said to her, " I know I'm quirky, I really do appreciate everything being done for me, but chemo is a no " to which she said " You'd be surprised, about 50% of the people I have seen through here this year have refused chemo ".  I was surprised.)

 

Wishing everyone the best on this thread.

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Re: June 2018 Chemo Starters

@ktk Definitely check with your team if you are starting bisphosphonates. The interactions between calcium uptake, vitamin D, and bone turnover definitely need to be considered. I don't understand them, even after a long talk with my dentist last week. 

 

Odd, your surgeon's take on vitamin D, given the NHS guidance: https://www.nhs.uk/conditions/vitamins-and-minerals/vitamin-d. I started taking it when my OH had a back injury and the GP discovered he was deficient and put him on a loading dose. We eased off for a bit, but then he was found to be deficient once again this past spring, and since we eat the same diet, spend about the same amount of time in the sun, and both wear sunblock religiously, it seemed likely that a supplement made sense for both of us.  

ktk
Member

Re: June 2018 Chemo Starters

I remember asking the surgeon at the beginning of this journey in April if it was worth taking vit D. He said that you could not buy any commercially that was enough to make a difference. I am happy to take them, but am confused that it says not to take with bisphosphonates which I start in a couple of weeks. It also says don’t take with steroids so I have put off starting until they are out of my system. Kx
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Re: June 2018 Chemo Starters

I haven't -- but I take vitamin D already. It may be related to your most recent blood test results, or just something your hospital routinely does, since most people in the UK (this general latitude and further north) are vitamin D deficient over the winter months.
ktk
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Re: June 2018 Chemo Starters

Vit not but!!!🤣
ktk
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Re: June 2018 Chemo Starters

Ok here is another question, not so sensitive!

Has anyone been given Adcal calcium but D tabs? They were randomly in my last pack from oncologist but he didn’t mention them!! Kx
ktk
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Re: June 2018 Chemo Starters

Thanks for all the replies. Very reassuring! We are just not used to talking about such things!!🤣
Kip Community Champion
Community Champion

Re: June 2018 Chemo Starters

KTK,  funny you should ask that.  I had problems when actually having a wee, when I thought I had finished I would find I stood up and then had a waterfall... I actually found out hat having no hair down there also made peeing straight difficult.. who would have thought.  I do think its chemo doing it, as everything gets hit by the bloomin' stuff.   It has improved now though, was worse during FEC and first T... and to think I was most worried about being bald... I never imagined there would be so many more problems to contend with!

Kip

xx

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Re: June 2018 Chemo Starters

@ktk
I’ve had a break from chemo since 1st August and have found that control has gradually returned. Winning! 🤗
ktk
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Re: June 2018 Chemo Starters

That’s a relief! Not an UTI as there is no irritation, just a waterfall!!!🤣
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Re: June 2018 Chemo Starters

@ktk
I know exactly what you mean. As I understand it the chemo irritates all of the cell membranes from top to toe and as the drugs are processed through the bladder eventually, I would guess these get a bit sensitive too. I’m only guessing as I have no medical knowledge about this but it makes sense to me. It’s always a good idea to rule out a UTI but you are definitely not alone. It’s just one more indignity to deal with.
🤗
ktk
Member

Re: June 2018 Chemo Starters

Ok ladies here is a question about a delicate subject, so skip if you want to!!

Has anyone else had problems with their waterworks as a result of chemo? Even if I am not bursting I find that I peak on the way to the loo. It is not the same as stress incontenance as not a cough leak, but not pleasant at all. Kx
Kip Community Champion
Community Champion

Re: June 2018 Chemo Starters

Hello everyone, well its all happening on here isnt it.   

Cdc i like Tingle...  tingle isstill tingly and numbish and sometimes the tjngles go up my arm like pins n needles but hopjng it will sort itself ss chemo gets out of system.  Im startjng to feel better slowly, v tired  but worst thing is still the waterh eyes, sometimes i cant cven focus as they water so much.  I hope your red face is lessening, at least nobody can say you look pale and ill.  I had a red face with first fec snd everyone kept sayjng looked like i had been sunbathjng.  Its shocking how manh women get bc bc isnt it, and a realky good thing your cousin got checked out too.  It just seems the age for screening is too high!!!

Im not sure who asked but j had high liver enzmenz one cycle too, it didnt delay the chemo but they said it was all the drugs we have to take plus the chemo and our poor livers work soooo hard.  It came down for the next one though.  

I also had a reduction jn my chemo on T, the nurses said there are safe levels to use and as they dont go below or above these levels its fine.

I also have fluconozole each cycle after my stint in hospital and severe Larry mouth, it has defjnately helped , i start taking it as soon as my mouth starts to feel odd, usually day 4 for me, and take one a day for 10 days plus i swish mouth with salt water every couple of hours and after eating and have avoided the ulcers since.  Even Larry hasnt been so lardy.

Well i have the last antibiotics today, then no more tablets until Tamoxofen!!  Will be strange tomorrow not popping the pills but looking forward to giving my body a rest.  Will be even weirder nsxt weekend not startjng the steroids for chemo, havjng friends over to celebrate that fact!  Hope i can stay awake!!!

Take care

Kip

 

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Re: June 2018 Chemo Starters

So good you’ve met some nice people om the chemo ward Sally.  I always end up being the only woman in a room full of old men, They were all asleep yesterday and some were snoring which kept me awake!

 

Shi I certainly look as though I’ve done a few rounds on the dance floor with my flushed face! 💃🏻 💃🏻 💃🏻💃🏻!

 

My temp is ok but will certainly keep checking over the next couple of days. 

 

XXX

 

 

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Re: June 2018 Chemo Starters

Hi CDC,

I've not had a red face on the paclitaxel but I've had some nice sleeps during chemo with the piriton. These a couple of us that have it at the same time and we all fall asleep at various times. Yesterday I fell asleep before the taxol drip even went on and woke up 15 minutes after it had finished (I had 45 minutes left on the cold cap timer). Luckily Linda in the next chair had ordered my lunch cos she knows I always have a tuna sarnie.
Shi Community Champion
Community Champion

Re: June 2018 Chemo Starters

Cdc ❤️❤️Aunt sally cheeks on t are quite common but please do check your temp and check with your unit in case it’s a reaction darling 💪💪💪Georgie, everyone’s Chemo is specifically for them a 75% dose for someone could be someone else’s 100%, your onc will have seen every scenario before and will know exactly what to do darling keep 💪💪💪 come on cdc you and me leading the girls with a bit of locomotion by kylie on the dance floor 💃🏻💃🏻💃🏻🕺🕺🕺💃🏻💃🏻💃🏻💃🏻💕💕✨✨✨Shi xx
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Re: June 2018 Chemo Starters

Aargh! Just spoke to chemo hotline nurse who says the redness should subside within next 48 hours but she is going to suggest they keep me in as an inpatient on my next cycle just to observe how I get on, I seem to be having quite noticeable skin reactions to the Taxane part of my chemo, Not sure what they can do about it. Will talk to my BCN on Monday and se what she thinks. Hope everything will have calmed down by then. Did notice that The skin has started peeling a little off my toes and fingers! Not pleasant. Feeling a bit fed up but thankfully still no nausea! Xx
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Re: June 2018 Chemo Starters

Her Elton - Herceptin! How I love predictive text and it’s great name for things!
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Re: June 2018 Chemo Starters

Reddi I hope you are feeling much better and the new antibiotics are helping. Also that the lower dose works for you too. I thought I’d beaten the record for time spent in hospital for chemo - didn’t get out till nearly 7pm yesterday due to delays and the fact that they had to administer my new drug over a long period to check for an allergic reaction. I really was bored by the end. However, you do top me as I didn’t get to the unit till nearly 11am.

Sue sorry to hear you’re having a delay but it sounds like it’s for the best. I had a few days delay before starting on my new chemo regime and I actually enjoyed the breather as I was virtually side effect free by then. So lovely to feel relatively normal! As I’ve said I seem to have skin issues on the T rather than problems with liver/bloods etc.. I had 4 cycles of AC before the docetaxel and my SEs were continual nausea and mouth issues. Fingers crossed your bloods will be fine and you can go ahead with chemo next week. Good luck. X

Hi Kip Thought you could name your thumb Tingle! Hope Tingle is behaving today and Larry has been sen packing! .
I suppose we’ll just have to wait and see whether periods will return after chemo. I’ve been told I’ll be on tamoxifen after my mastectomy. I’m also Er 8/8 as was my Mum and her sister. Listening to others I would have thought that I’d have been given Zoladex with the chemo but I was told I’d take it with the hormone therapy. Must remember to ask the oncologist when I see them later this month. So shocking to hear another person you know has BC. My younger sister has 2 colleagues with BC. Our cousin has just found out she needs a re-excision after a lumpectomy a couple of weeks ago. It has really affected me finding out about my cousin as she is early 40s. . I’m just so thankful that she found out this year, (after deciding to go for a private ultrasound)as she was told it would have been too late if she’d gone next year.

Lisa Looking at your photos it certainly seems like a break from chemo is very wise. Do you ever have any problems with your feet? I do hope they reduce your dose if necessary. Your body has been through so much!

LJ don’t worry about the moans. This is exactly the place to moan as we all understand and sympathise. Sorry you’re stuck with having the Her Elton on Sundays, Hope you get to go on your trip to Belgium. It’s so good to have a break from b***dy treatments!

ktk and Shi Will definitely try out the Doublebase and underlying smooth with extra urea. How are you doing?

Sally The Piriton they added to my infusion took me by surprise. I suddenly felt really faint and light headed! Is it a big dose or something? Ive never really taken Piriton before so don’t think my body was used to it. Did you ever fpgrt a red face on the Packlitaxel. I thought I was having a hot flush earlier but my cheeks have just stayed red!

Mimi hope you are enjoying a chemo/side effect free weekend.

Best wishes to all of you!

Clare xxx
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Re: June 2018 Chemo Starters

Hi all

 

Georgie - I’m glad they’re going to reduce your dose as your chemo issues have been truly awful.  So hope it helps. Hopefully the fluconazol with help with your mouth problems too.   I’ll be thinking of you especially on Thursday and Fridays.  I now have bloods on Thursday and chemo on Fridays so we can be chemo buddies!  Reddi am I right in thinking you also have chemo on Fridays too?

I had my first of nine weekly Paclitaxel yesterday instead of 2 more docetaxel as my onc said id had a severe reaction  dose of T.  I haven’t had any neutropenia thank goodness but I seem to have a lot of skin issues.  I’m just waiting for a call back from the Chemo nurse as I’ve had a permanently red face today.  I could stop traffic!  ☺️🚦🔴 Just been reading that it’s a common side-effect of Packlotaxel.  Oh joy!  At least the hand/foot syndrome I had on docetaxel was less noticeable!  I hope it doesn’t last- I feel so self-conscious.

i feel far less tired though, so far , and spent a couple of hours helping to fill a skip at my Mum’s! Not sure what my medical team would think but I was extra careful to use gloves. Hope you have a good weekend.

 

 

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Re: June 2018 Chemo Starters

Hi Georgie -- The broad-spectrum antibiotics are only an issue with respect to C diff if you have C diff in your system. It could have been in my gut for quite some time -- I might have picked it up last year while caring for my mom, who has a muscular dystrophy and so uses a bed pan. Basically, the board-spectrum antibiotics killed off the other bacteria in my gut, but not the C diff, and the C diff took advantage of the extra space and lack of competition to colonize. The main thing to watch out for is diarrhea. My hospital's chemo hotline sheet made it clear to call after 4 episodes within 24 hours, and to treat it as urgent at 7+ episodes -- and I was at 7 when I went to the A&E. Just keep on alert, and stay hydrated.

 

Perjeta is another HER2-targeted biological therapy. The NHS only gives it, with Herceptin, pre-breast surgery. I have only had sentinel lymph node biopsies thus far. Surgery will be on the other side of (neoadjuvant) chemotherapy. (I don't know how they decide who gets Perjeta.)

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Re: June 2018 Chemo Starters

Hello Reddi, and everyone else, 

 

I am grateful that you told me that it isn't that unusual to have 75% docetaxol.  I was a bit concerned that it wasn't 'enough' ....... what is perjeta for?  I am having herceptin alone for a year, every three weeks. I'm negative for hormone involvement. 

 

Also, the C diff sounds scarey and I really hope you get rid of it.  It is concerning that the broad spectrum antibiotics plus docetaxol could have sparked off C diff.  I do wonder what the heavy IV antibiotics for sepsis plus the ones they started me off on for the MRSA did for my body, in terms of how the NHS are always warning us not to ask for antibiotics as our bodies build up a tolerance to it! 

 

Does anyone else know about antibiotics tolerance?

 

Thank you so much.   I really value your 'company' on here! 😉

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Re: June 2018 Chemo Starters

@Georgie I didn't have nearly as awful a time on FEC as you did (1 A&E visit / admission for febrile neutropenia, 1 A&E visit for identified infection in the arm where I got chemo while neutropenic, both requiring antibiotics), and this despite getting filgrastim injections -- the usual 5 each cycle plus extras in hospital and 5 extra days after the arm infection as identifed. Plus, as noted in a post earlier today, my liver enzymes were elevated at the end of cycle 3, forcing a 2-week delay before I started TPH. They lowered my first docetaxel dose to 75%, too. And my oncologist says I'm tolerating chemotherapy well!

 

Happily, I wasn't neutropenic midway through or at the end of cycle 4 (first TPH) -- an improvement! (Consensus is that my C diff. infection and severe diarrhea in cycle 4 was almost certainly provoked by the broad-spectrum antibiotics I got in cycle 3, but perhaps exacerbated by the docetaxel. Now on different antibiotics for the C diff.)

 

From what I understand, lowering the dose isn't uncommon. Safety first. I thought my docetaxel dose might get bumped up for cycle 2 of TPH, since the Perjeta and Herceptin dose is lowered, but they kept me at 75% again for cycle 5 yesterday. 

 

I hope the lower chemo and steroids dose, fluconazole, and continuing filgrastim injections help you get through the next cycles with many fewer SEs! 🤞

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Re: June 2018 Chemo Starters

Hi All,

As you know, I have had an awful time with FEC, and was due to start Herceptin and T on Thurs and Friday this week, but because of all the neutropenia and hospital admissions, I had a meeting with the head oncology nurse on Thursday instead of treatment. Onc has decided that I am very over sensitive to chemo drugs full stop!..... I tend to agree 😫!!!

 

So they have planned to only give 75% of the full dose, even before I start... and only 50% of the steroids. Don't understand all of the technicalities, but the nurse said that they are trying to keep me out of hospital. They're giving less steroids because he said they didn't appear to make much difference with FEC, and even with the white cell booster injections, I still had neutropenia and 3 trips to A and E with high temp. and infections.

 

They are giving me 2 whole weeks of fluconazole and mouth washes too, since the oral thrush was so bad that I could hardly open my mouth whilst in hospital last time. When they asked me to say the obligatory
'aaaaah', I only came out with a very husky oooooooor!! 😂🤣.....

 

So it's Thursday for Herceptin and Friday first T.


Love to all, especially those on treatment this week or next ❤️

Georgie ❣️

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Re: June 2018 Chemo Starters

@Sue I had elevated ALT liver enzymes at the end of my 3rd cycle of FEC (usual pre chemo blood test day had them at 260 vs normal range of 10-40 for women) and ended up having my first THP cycle delayed by 2 weeks. They went ahead with cycle 4 when my ALT was down to 67. By day 13 of cycle 4, I was down to 30 -- totally resolved.

In my case, they think it was a combo of chemo, antibiotics for an infection (cellulitis or thrombophlebitis), some dehydration (went hiking in the Wye valley over the 3 days before my pre chemo blood test), and some small amount of alcohol consumption (1.5 pints of 3.8% beer spread over those 3 days), with the first 2 being the suspected main culprits. To help my liver recover, I drank lots of water -- at least 3.5 litres a day, plus other fluids like tea, diluted coffee, OJ, detox smoothies -- and kept things easy. My breast cancer nurse also recommended milk thistle tincture drops from A Vogel. They taste disgusting and I have no idea if they helped, plus the oncos are always advising against supplements, so I would advise talking to a member of your team before trying them. I only did so when my first 2 follow-up blood tests still had my ALT above 200, but it may have simply been the extra time between ending antibiotics and last beer that got things resolved.

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Re: June 2018 Chemo Starters

Hello all

I've had a bit of glitch in my treatment. My blood tests showed that one of my liver enzymes was quite high so they are delaying my 4th treatment by a week to give it time to settle down. Wasn't the news I was expecting as so far I feel as though I've been quite lucky with the fairly minimal side effects I've suffered in comparison to some of you.

I feel fine - really my pre-chemo self so I'm hoping it will sort it's self out.

Has anyone else had this issue? I'm on EC regime

Thanks, Sue
Kip Community Champion
Community Champion

Re: June 2018 Chemo Starters

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...

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Re: June 2018 Chemo Starters

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
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Re: June 2018 Chemo Starters

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
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Re: June 2018 Chemo Starters

@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 Community Champion
Community Champion

Re: June 2018 Chemo Starters

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
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Re: June 2018 Chemo Starters

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

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Re: June 2018 Chemo Starters

@Shi Ordered some yesterday -- arriving tomorrow! Thank you as always!
ktk
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Re: June 2018 Chemo Starters

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

Re: June 2018 Chemo Starters

Sorry udderly smooth with extra urea. Xx
Shi Community Champion
Community Champion

Re: June 2018 Chemo Starters

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