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June 2018 Chemo Starters

ktk
Member

Re: June 2018 Chemo Starters

Hi Karen. Ring the helpline. Probably nothing to worry about but better safe than sorry!!! Kxx
Karen942
Member

Re: June 2018 Chemo Starters

Hey Ladies,

Hope you are all ok tonight 😊

Quick question, 5 days in from 3rd T and have a two inch ish lymph node or gland come uk in the middle if my neck / throat. Not feeling ill as such , anyone had that and should I do anything , it’s not painful or red and is soft, kinda feels like it’s fluid filled 🤷‍♀️

Karen
X
RedRose
Member

Re: June 2018 Chemo Starters

Major hot flushes here too, cheeks and head mainly, to the point where sweat dripping 😓. Not sure if early menopause, chemo treatment or zoledex causes them. Not had a period since beginning of chemo but that expected as zoledex is being used to effectively shut down my ovaries on a temporary pause, but was warned that it may be permanent. Won’t find out till chemo and rads all over xx
RedRose
Member

Re: June 2018 Chemo Starters

I think it’s the control aspect for me too tbh, we all have so many appointments and things we have to do when it comes down to what we want to do it has to take a seat on the back burner because of the cancer. Either appointment already or feeling not up to it because of the med. Hate being in limbo especially this time of yeah when so many birthdays, festivities etc, can’t plan a thing yet xx
RedRose
Member

Re: June 2018 Chemo Starters

Hi all, yeah it the radiation ct and planning. Had on on Monday at local hospital and signed consent form etc, but told him that still have last chemo to do yet and it has been delayed again by 2 weeks. So rads ct appointment on 25th, oncologist 26th and if he says yes, last chemo on 31st. So possibly ringing the bell 🔔 on Halloween 🎃. They said that they was going to give me a 4-6 week break in between chemo and radiation treatments to let me recover, so by my calculations Christmas dinner🎄 looks to a festive sandwich 🥪 at the hospital. Was so hoping to get it all done with by then and give the step kids a “normal” Christmas. It will be my first tattoo too, thought if I was to get one my first would be a rose 🌹 not 3 bloody cancer dots. Ah well beggars can’t be choosers. Xx
LJ
Member

Re: June 2018 Chemo Starters

Oh Lisa, big hugs to you - we're all entitled to those days xx

 

I'm waiting for my planning appointment date, I hate not being able to plan - it's the control freak in me coming out!

 

Ref the weight thing. I shall weigh at Slimming World tomorrow morning - I've put on 9lbs so far - reckon that'll be up to about 12lbs and then I plan to refocus and get that shifted. I feel quite motivated for it at the moment so fingers crossed that lasts!

 

LJ

ktk
Member

Re: June 2018 Chemo Starters

Ah Lisa, big hugs. Is that planning for rads? They just get all the measurements right and the tattoos are a real disappointment. 3 tiny dots that you can’t even see. And I wanted a butterfly!!! However, I did get a very fetching top to take home!! Much love Kxxx
RedRose
Member

Re: June 2018 Chemo Starters

Sat here in tears. Think I’m having a off day. Just really emotional. Notts City hospital have just rang to invite me for and appointment on 25th October for a CT scan and planning appointment, presumably that means discussing and tattoos. Just tired to get hold of OH to discuss it with him and and he messaged signal bad and busy, ring you later. So then I burst into tears. May be it’s the fear of the unknown or just cos I’m feeling 💩 anyway but it all a bit daunting and feeling like on a rollercoaster 🎢. Deep breaths and put my big girl pants on. Xx
ktk
Member

Re: June 2018 Chemo Starters

Re weight. I lost about a stone following surgery and FEC initially. Mainly due to the slight nausea suppressing my appetite, and the lovely weather making salad the staple!! However, I have now regained every ounce and then some 😭. This is due to T I am sure. Although I couldn’t taste properly I was constantly craving rubbish food especially sugar. I think partly in an effort to find something to taste, but also a desire by my body to boost my energy.

Also, and for me this is crucial, I have been so sedentary. I have no energy, and even the slightest exertion exhausts me. I know I need to start exercising but I am still waiting to recover from my last chemo session. Hopefully soon, but from what everyone says about rads, I don’t hold out much hope. Still, a few (🤣🤣) pounds is a minor consideration compared to bc!!!

Loads of love to all. Kxxxx
Kip
Community Champion
Community Champion

Re: June 2018 Chemo Starters

hello CDC - interersting to hear about the menopause.  I have only had 1 period during the first cycle of chemo and then nothing and I also get hot flushes.  I don't flush in the face though but just feel so sweaty, even on my bald head.  I thought it may be chemo but now 3 weeks past last one I am still getting them.  It wakes me up too, I am in and out of the bed covers like a yo-yo!   What a nightmare, perhaps we could all harness our hot flushes and make some electricity, we would supply the National Grid with lots and lots!  I keep wonderign whether I will get a period now I've finished chemo, but then panic about what that means in terms of oestrogen?   I hope you enjoy your day in your "pit".. sounds heavenly.... I am still wishing for a solid nights sleep but they don't seem forthcoming.. hot flushes, achy body... wandering mind.. not condusive to a good nights sleep.

I also stepped on to the bathroom scales this rnorning having put on a favourite pair of jeans and found then very tight... eeek... I have put on 1 and 1/2 stone since diagnosis!   OMG... I really must do something, I have never been this weight in my life!   Not sure how I am going to manage weight loss amidst surgery and radio though?   I know I have been eating lots of rubbish, so am going to try to cut that out and just eat a bit healthier.   I understand that Tamoxofen can cause weight gain too... oh good lord.. thats all I will need! 

Good to hear the Marsden are going to be taking over for you, hope the help and that your feet issues sort themselves, Tingle still a tingling.. and I get funny pins n needles go through my hand too but its not white looking though.

KTK - enjoy your Wales trip, sounds lovely.

Lisa Marie - how are you doing?

Kip

#xx

cdc1811
Member

Re: June 2018 Chemo Starters

Georgie Gee How are you feeling? Hope you can have a restful day today.

Lisa Any news on when you’ll be able to proceed with chemo? I really feel for you with the leg, hands and feet problems. I remember when I had a male nurse come to check my wounds after my second surgery. I was used to my female surgeon and I have to say I did feel a bit odd with him prodding and poking my boobs! Just had to remind myself it’s his job and he’s seen loads of breasts of all shapes and sizes and in various states. Hope there are no more delays and you can get going with your last chemo and then on to radiation before Christmas. Hope you enjoyed your date night, The trailer for a Star is Born looks good.

LJ Sorry you’re feeling so wiped out. Your blistered elbows sound so sore. That’s what happens with hand/food syndrome - from what I understand any pressure can cause problems. I think it’s because it presses on the capillaries and causes some of the drug to leak into the surrounding tissue but I could have that completely wrong!!

ktk Hope you are feeling a bit brighter and can enjoy all the things you have planned.
A trip to Wales will be wonderful. So many beautiful and interesting things to see,

unfortunately a few of my toes seem to have lost sensation, They are noticeably pale compared to the others so I’m not entirely sure what’s going on and whether I’ll ever get the feeling back. The too tight walking boot analogy is a really good one. Exactly how they felt at first. Suppose I just have to hope for the best but the chemo nurse has said they may need to reduce the dose of Paclitaxel further if it’s already causing me problems,

I am pretty certain the chemo has put me into an early menopause. I’ve only had one period since I started  and now I am getting multiple hot flushes a day- ugh! It’s been worse since starting the Paclitaxel. I read a US statistic that said for people in there 40s and 50s the chance of going into earlier menopause because of chemo is between 70 and 90%. It also said chemo induced menopause produced more severe and prolonged symptoms. Great! - not! Does anyone else have an issue with the hot flushes? They are really getting me down. Feel horrible and also embarrassing as I just light up like a stop sign! The heat that emanates from me could be harnessed for electricity I’m sure! I might try taking B12 or Evening Primrose oil but suppose I’d better,check if that’s ok with my medical team first.

I had good news yesterday but it’s also made me extremely nervous, The Marsden have agreed to my referral and will be taking over my care once chemo is finished. I know I really want to have my surgery there but i’ve sort of got used to everything else happening at my current hospital. The Marsden is also a lot further away for follow up appointments.  However. I am pleased because I will really value their thoughts once they’ve read all my notes. I’m wondering if they might offer any other options regarding surgery and what their take will be on having radiotherapy. I should have my first appointment with them in the next 3 weeks.

My OH has taken our daughter to school and is currently having breakfast with my oldest step son -who is down for an appointment at The Tavistock. I suppose I’d better go and say hello before returning to my pit where I’m intending to stay for much of the day.

Oh no Here we go again-will just wait for the hot flush I’m currently experiencing to subside........phew. It’s gone!

Take Care everyone xxx



cdc1811
Member

Re: June 2018 Chemo Starters

Hi everyone
Sounds like we’re all rather in the wars at the moment. Sending synoathetic hugs. I crawled into bed last night after getting through my daughter’s birthday celebrations - I feel I’ve run a marathon. Been craving for this day. I intend to stay in bed for most of it! Spent the last week putting on a brave face as I haven’t wanted to spoil things for my family. It’s been fun but exhausting.

Kip-Sorry about all the aches and pains. Good idea to check in with the May ladies and whilst it doesn’t make them go away, it’s helpful to know that they’re a normal side effect. Glad you’ve got the pre-op out the way and fingers crossed that your surgery can go ahead next week. Understandable to feel nervous. Hope you can do some distracting/fun things in run up to your op.

Reddi-you are always so well informed. Really helpful info for those having trastuzumab. .
Kip
Community Champion
Community Champion

Re: June 2018 Chemo Starters

Hi, sounds to me like Hercepties DOES give side effects, I've not had it so can't comment but everything seems to so it only follows suit that it would too.

Lisa Marie - wow you've had your planning meeting, at least things are moving forward, pending that last chemo, but fingers crossed thats ok.  Enjoy the date night, sounds fab!

CDC - Glad Harry Potter was great, made me smile thinking of you moisturising your feet in the lunch hall.. that would have been funny.   Hope the numb toes get better, Tingly is still, tingly and numb although not got any worse, still not had anyone look at it though!

KTK - T really does hit you as it goes on doesn't it.   My legs, calves, thighs, bottom arms, shoulders.. in fact everywhere... really ache at the moment, it feels like I've wallked a million miles.. I asked the ladies on the May chemo whether this is a normal side effect, and guess what... yes it is... many ladies suffer with aches and pains and generally feeling 100 for quite some time after chemo.. oh marvellous hey!  

I\ve just returned from hospital having had my pre-op assessement for next Tuesday's lymph node removal...getting nervous now.   Had to wait about hour and half for a blood test, was so busy in there, but fingers crossed all neuts ok ready for surgery.  

Kip

xx

reddi
Member

Re: June 2018 Chemo Starters

@Georgie My hospital has communicated trastuzumab side effects to me, so I'm not sure why yours has taken a different approach. NICE has a nice long list of common side effects for the drug. So does Genentech, which manufactures the brand-name version, Herceptin. (I find Herceptin much easier to remember than the generic name "trastuzumab.")

 

Per Genentech, "the most common adverse reactions associated with Herceptin in breast cancer were fever, nausea, vomiting, infusion reactions, diarrhea, infections, increased cough, headache, fatigue, dyspnea, rash, neutropenia, anemia, and myalgia." Infusion reactions are the allergic reactions -- the reason they monitor you closely in the chemo day unit for a period after they administer the drug. Plus, there's the potential for damage to the heart, which is why we get heart scans done every 3 months while taking Herceptin and then every 6 months for 2 years after finishing treatment. Those heart scans are to be sure we remain in good health. They take you off the drug if your heart becomes less efficient at pumping! Heart 

Georgie Gee
Member

Re: June 2018 Chemo Starters

Thank you so much everyone for your confirmation of the steroid dose. 

 

I am going to take 2 x2mg dose as it says on the pharmacy label, one dose for breakfast time and one dose for lunchtime.  

 

An interesting observation.... because I had the herceptin last Thursday, and it was supposed to be first T on Friday, I have had a few days with just the herceptin in my system.  I am definitely fatigued, and have sore joints.  I have gained a couple of pounds as well, with no reason.  The first night I had a temperature, nausea and diarrhoea,which were bad enough for the chemo nurses to postpone the T on Friday, and gave me a couple of bags of fluid instead.  

 

I cannot understand why the professionals deny that herceptin has side effects.  It is consistent across oncologists, chemo nurses, breast care nurses and surgeons.  

 

Side effects however, are reported by patients, carers, PLUS the list of possible side effects on the guidelines for use. 

 

Any thoughts anyone? 

Georgie x

RedRose
Member

Re: June 2018 Chemo Starters

Hi ladies. Re steroids 4x2mg the day before, day of and day after chemo morning and lunch time. Just got back from radiation planning appointment and another male doctor have a good feel of my left breast. Told me I would be having 3 weeks radiation with a one week boost? I am to let them know when the last chemo goes ahead as it needs at least a clear 3 weeks between the two. Chemo delay of 3 weeks means if I’m delayed anymore it’s begining to look like Christmas dinner and Nottingham City hospital. Regarding the different chemos FEC was more of a wipe out one for me but effects were fast and over with by a certain date so more manageable, T seems to take longer to effect me but give more side effects. Have a lovely swollen left leg and red feet and hands atm, but at least taste is back and not so tired. So much so, date night to watch a star is born last night. Xx
ktk
Member

Re: June 2018 Chemo Starters

Hi LJ. You sound just like me. Haven’t even bothered to get up yet! I’ve got some nice things planned for later this week and hope to get away to sunny Wales next week before I start rads. Hope I feel better soon! Kx
LJ
Member

Re: June 2018 Chemo Starters

Ref the steroids, I also had 4 x 2mg twice a day for three days with T. 

 

T has been far harder for me and each time I've recovered a little less by the next chemo date, and that was even with reduced dosage after the first cycle. This third one has completely wiped me, I too feel slightly flu-y and all of my skin is really sensitive. The inside of my nose keeps cracking and bleeding. On Friday I sat with my elbows on the table for a couple of hours and ended up with a blister on each!  That's without the sheer effort I'm having to put into walking anywhere!  Mentally though I'm quite energetic!

 

Hugs ladies x

 

LJ

ktk
Member

Re: June 2018 Chemo Starters

Hi CDC, thinking about numb toes. After my first T some of my toes felt as if I had been wearing too tight walking boots, sort of slightly bruised. Two of these toes now appear to be a bit discoloured from what I can tell where the black nail polish is growing out! In this last cycle a few of my fingernails now have that similar bruised feeling. Not holding out much hope as I expect I will lose them ☹️

Other than that, it is taking a long time to get back to normal after T3. I have had a headache I can’t shift and I feel a bit fluy, although no temp. I would feel better if my stomach would settle.

Hope everyone is ok. Kxx
cdc1811
Member

Re: June 2018 Chemo Starters

Regarding the steroids I had to take 4 x 2mg of dexamethasone on the morning before the T then the same in the morning and lunchtime for three
days afterwards. That’s a whopping 16mg a day I believe. I did not have FEC but AC which I struggled with due to the nausea and some mouth issues. However, I found Docetaxel caused no nausea BUT did leave me feeling totally out of it, discombobulated is the best way I can describe it. Maybe it’s because it was the first one of a new drug. I did feel a bit like this on my initial AC. It also caused severe issues with my feet and hands. The paclitaxel is by far the easiest in terms of m feeling pretty normal. I do get the facial flushing which thankfully goes down after a day. I do have skin peeling and today I noticed a couple of my toes are numb. We did traipse around the Harry Potter tour fir ages yesterday , my daughter absolutely loved it, but I was on my feet for around 12 hours with only a few opportunities to put my feet up (certainly didn’t have a chance to moisturise and put them in clingfilm at lunch time - don’t think the other visitors would have appreciated seeing that whilst drinking their Butterbeers!) I’m going to see if the feeling in my toes returns by this evening but if not it looks like I’ll be calling the hotline again- sure they’re sick of me ringing but I’m only following the protocol given in my Chemo diary. Hoping it’s not neuropathy- feels like I’ve been walking in snow and the feeling in my toes hasn’t come back yet.
How is everyone doing today? It’s particularly wet, dark and blustery today- but like my mood but I think it’s just because I’ve overdone it. Will try and have a restful afternoon after getting some jobs done this morning xx
Kip
Community Champion
Community Champion

Re: June 2018 Chemo Starters

Hi ladies, just seen all the posts regarding steroids, i had 4 steroids twice a day on the day before chemo, day of and day after and then 2 steroids twice a day for followjng 3 days.  This was for the T cycle.  I know for Fec it was 4 a day though.

As for whether Fec or T was easier, I found Fec SEs started quicker but faded quicker anx with T i 

had more mouth issues and tiredness but that jst be cumulative overall.  I had trouble with low neuts on first T too but everyone seems to react differently and a lady at chemo said shw fojnd Fec harder.  So j think yiu just have to go witn the flow, my Onc said the first T is hardest because yiu still have Fec in your body Znc the 2 mix and also your body has got used to fec by then and my first was definately tougher.

Kip

X

JacqB
Member

Re: June 2018 Chemo Starters

Thank you ladies 😊
Ktk, your experience of T sounds very similar to mine, I always managed a good few days after the treatment and then two weeks of feeling rubbish. Linda I think around the 24th but all depends on the axilary scar being healed fully.
Reddi, It makes sense that the cumulative effect of both must have an impact. I’m hopeful that as I haven’t had any chemo since 1st August and I’m feeling very well, the FEC won’t be to taxing. 🤞
Xx
ktk
Member

Re: June 2018 Chemo Starters

Hi Jacq, to be fair, compared to many, I have had a relatively easy time on both. At least no trips to Casa nhs! I found FEC easier because, other than the few days of slight nausea, I then had two good weeks. T is easier for the first few days then made me feel ‘ill’ for the next ten! Nothing specific, but achy, bad indigestion, diarrhoea and so on. I found that I was unable to plan anything because I didn’t know how I was going to feel. And T also has left me very fatigued. Everything is an effort!!

But everyone is different so just take it as it comes and hope for the best!!! Kxx
Linda Corinne
Member

Re: June 2018 Chemo Starters

Jacqb I felt worse on fec as i worked full time throughout both but only had the odd day off on T. I felt sick on Fec straight away which lasted until the next week although I wasn't actually sick. You get anti sickness medication and also some to take as and when needed which I took now and then.
I didn't get many problems on T that were too bad. I only got pains 1 night but that may have been the injections. I had toilet issues throughout both though. Also teeth issues with both. When are you starting chemo again?
reddi
Member

Re: June 2018 Chemo Starters

@JacqB For me, T (docetaxel, in my case) has been harder -- more fatiguing. However, I haven't been neutropenic on T thus far, touch wood, and I'm now also getting HER2-targeted drugs, so I have side effects from them, too, which complicates my comparison.

 

From what I understand, people can respond very differently to the drug regimes. I met a woman back in the summer who had chemo a year or two ago and had a terrible time on FEC while finding docetaxel manageable. Perhaps it's related to underlying DNA, and/or cells' sensitivity to different chemicals. It may also be that with FEC first and T second, one after the other, my body is just needing more time to recover each cycle.

JacqB
Member

Re: June 2018 Chemo Starters

Hi
I have a question for those of you who have had both FEC and T chemotherapy, is there really any noticeable difference between the two, and if there is, which is easier to deal with?
Jacq x
Georgie Gee
Member

Re: June 2018 Chemo Starters

Oh !
I just wrote 'me' twice!
Please only read as 50% of the 'me' words!
Hee Hee!.....
Georgie Gee
Member

Re: June 2018 Chemo Starters

Thanks Ladies...

 

I think I will call on Monday to make sure. I seem to remember some of you saying about taking 2 lots of 4.

 

I think that the chemo nurses had already requested 50% dose from Pharmacy, which says to take 2 x 2mg twice each day, but then one of them saw the box, and halved it again and told me to only take one. 

 

Trust me me to get in a pickle with this..... oh dear! 

ktk
Member

Re: June 2018 Chemo Starters

CDC the other drip you had with T will have been Piriton, again to help with allergic reaction. It is the one that sends some people to sleep!! Kx
cdc1811
Member

Re: June 2018 Chemo Starters

Hi Georgie Gee, Hi Lisa, Hi all

I hope you are feeling better today.  I will check the dosage of the dexamethasone when I get home but for my first (and only) docetaxel I don’t think they wrote the information in my chemo book down correctly as it says I was given 148mg Docetaxel via the drip and nothing else and I’m sure they put someying else up as well as the saline flush!  I also had 125mg of aprepitant (Emend)in tablet form.  

Some of the chemo nurses are better than others at filling in the correct details which is a bit worrying! I’ve had to point out when I’ve realised they’ve got something wrong.

Just off for an early breakfast before hitting Harry Potter Tour!  Facial flushing seems a lot better. Phew.

Have a good day everyone xxx


@Georgie Gee wrote:

Ladies having T at the moment, or have had this, 

can you tell me what dosage of Steroids (dexamethasone) you have had please? I have been told I have to take one 2mg tablet in the morning and one at lunch time, on the day before, day of chemo and the day after....  There seems to have been some confusion between pharmacy and the chemo nurses, as I heard them on the phone whilwas having herceptin.  

Thanks if anyone can give me that info.... I'm a bit confused... I had been told I would have only 50%, but this seems a lot less?  The last thing I need is for this to be wrong and have more side effects on the first days.... 

 

 

ktk
Member

Re: June 2018 Chemo Starters

Georgie, when I moved to T I took 4x2mg twice a day for three days starting the day before treatment. Steroids for FEC help with anti sickness but with T they help prevent adverse reaction. Kx
reddi
Member

Re: June 2018 Chemo Starters

@Georgie I've been prescribed 4x2mg (8mg) of soluble dexamethasone BID (breakfast and lunchtime), for 3 days, starting day before docetaxel -- so 4x what you are getting. My recollection is that during FEC I was prescribed 2x2mg (4mg) regular dexamethasone BID (breakfast and lunchtime), for 3 days, starting day after FEC -- but I don't seem to have written down the dosage in my diary. Also worth noting that I've not had steroids-related side effects other than mild constipation/hemorrhoids, so they didn't make any special adjustments for me, as far as I'm aware.

 

Hope this helps as you talk to your team about your prescription.

Georgie Gee
Member

Re: June 2018 Chemo Starters

Ladies having T at the moment, or have had this, 

can you tell me what dosage of Steroids (dexamethasone) you have had please? I have been told I have to take one 2mg tablet in the morning and one at lunch time, on the day before, day of chemo and the day after....  There seems to have been some confusion between pharmacy and the chemo nurses, as I heard them on the phone whilst I was having herceptin.  

Thanks if anyone can give me that info.... I'm a bit confused... I had been told I would have only 50%, but this seems a lot less?  The last thing I need is for this to be wrong and have more side effects on the first days.... 

 

CDC, 

I am having to see my oncologist next Thursday, when my latest 'first docetaxol' is supposed to start.  I am going to ask her about any alternative there might be to it, but as she has already decided to give a slightly lowered dose, I think she wants to give that a go. 

 

 

Shi
Community Champion
Community Champion

Re: June 2018 Chemo Starters

Lisa Marie, sorry that should be abraxane, sorry text gremlins earlier 😘😘💕💕Shi xx
Shi
Community Champion
Community Champion

Re: June 2018 Chemo Starters

Hi Lisa Marie, please ask about Abraham’s, they’ve switched others to that who are allergic to t, but don’t mention it because it’s very very expensive, I only found out about it on here when I had a reaction on 2ndct and mishy18 from July17 thread told me about it because she’d had it happen to her 😘😘hope that helps darling you are doing brilliant even if you don’t think you are, you are blooming 💪💪💪💪and beautiful ❤️❤️💕💕Shi xx
Kip
Community Champion
Community Champion

Re: June 2018 Chemo Starters

Oh dear Lisa thats a tough thing to take, but you really do need to be strong enough for that dreaded T.  It really is a horrible drug and i am with CdC that perhaps they should switch you to the weekly pax ones.  Make the most of the break, try to see it as a positive and use the time to do something nice if u can.  Sending you big hugs. Xx

Cdc, wow thats some regime to keep up for your feet isnt it!  Hope oH is waiting on you, rest those poor feet!  

I feel extremely lucky to have got through my chemo, although i have to say 3 weeks on i am still exhausted and have very achy legs and back like ive run a marathon.. if only!  Still its strange to thjnk j would be starting steroids tomorrow and i wont be...  Ill be thinking of you all though and willing you on with yours.  We will all get there in the end...  Ill keep the cocktails on ice!!  

Lots of love to you all, chins up, poorly feet and hands rested and positive vibes

Xxx

kip

reddi
Member

Re: June 2018 Chemo Starters

@Lisa Marie Delays in treatment are so maddening and upsetting -- being in limbo isn't heaven, after all. But staying safe is so important, and though your diagnosis will be with you for the long haul, there will be times when you don't feel sick. (Hard to believe that in the middle of chemo, especially with such bad side effects, but I do believe it.) Maybe hink of the rest you might luxuriate in -- and the 2 weeks of wedding planning you can do as your body takes care of itself! Thinking of you. Heart

ktk
Member

Re: June 2018 Chemo Starters

Sorry to hear that Lisa. Big hugs to you too. Kxx
cdc1811
Member

Re: June 2018 Chemo Starters

Oh no, sorry very sorry to hear of more delays and side effects - they sound truly horrendous. Hope you all feel better soon. I swear that T is evil stuff! Hercepton sounds grim too. I don’t have to have that as Her2-.

I had to see the on call oncologist before they would do my chemo  as my notes said they should consider keeping me in as an inpatient to observe for reactions, Thankfully the onc was happy for me to proceed and signed something to say I was considered fit enough to go ahead as long as my infusion was over a longer period and I was given two different steroids to prevent reactions (the flushing face and peeling tingly, red feet and a little of the same on my hands). I also have to go to A&E if I feel breathless, the peeling gets worse or I get flushing that doesn’t subside within 48 hours. I’ve been instructed to elevate my feet, cover them with loads and loads of E45 (not massage in as it can aggrevate the skin further), wrap them in cling film and leave for at least half an hour. I’m supposed to do this at least 3 times and day and have to carry the cream with me wherever I go in case I need to reapply it. My OH was told he will need to wait on me as I need to keep off my feet as much as possible! I made sure he repeated what was said as he can have selective hearing 👂🏻

Georgie Gee, Lisa Marie Hall I’m shocked they aren’t considering putting you on the weekly Paclitaxel. There must be a reason I suppose. I’m so relieved I’m on my new regime now. The reactions I’m having on the P are nothing compared to the docetaxel. I really, really was dreading having more sessions and going in weekly but my quality of life is infinitely better than when I was on AC and then T. According to Nice guidelines we should all be entitled to and offered Paklitaxel as it has fewer side effects. I do still get fatigue after a day or two but I was a Zombie on the T and was in so much pain due to the hand/feet syndrome. I’ve had no nausea at all on Pacli and don’t even take any anti-sickness medication. My mouth has been fine and I have minimal taste changes. Lisa Marie, Georgie G Have your team mentioned a change of regime at all?? Hope you feel brighter soon, You too Sally. Xxx

RedRose
Member

Re: June 2018 Chemo Starters

Pealing and red feet and hands, swollen ankles means the oncologist has said yet again that I’m not fit for my last chemo session. He believes they are getting worse not better 😔. He has decided that I’m to have a 2 week break from now so with the 1 week break I have already had that makes a 3 week break. He believes my body is sensitive to the T. I don’t know 🤷‍♀️ what to think as kind of in limbo. I don’t want permanent damage which he has warned could happen but I want all this over with. Unfortunately with my diagnosis it will never be. Just sick of being sick now. He says I need some quality of life and won’t do the chemo till I’m 100% fit. Xx
ktk
Member

Re: June 2018 Chemo Starters

Big hugs Georgie Kxxxx
reddi
Member

Re: June 2018 Chemo Starters

@Georgie Oh, no! 

 

There are definitely side effects to Herceptin! In fact, they have a mandatory observation period after infusion to watch for side effects, including allergic reactions, which can be signaled by breathlessness, swelling to face/mouth, tummy/chest pain, etc. (Are you getting Perjeta [pertuzumab], too? They observe for both.)

 

I know you don't want to go back in to hospital, but do be careful and cautious. I'm glad the oncologist examined you and thinks it might be an infection rather than a reaction, but if anything gets worse, keep your promise! 

Kip
Community Champion
Community Champion

Re: June 2018 Chemo Starters

Oh dear Georgie, fingers crossed you perk up and avoid that hospital visit... take it easy...

Kip

xx

Georgie Gee
Member

Re: June 2018 Chemo Starters

Good evening lovely Ladies,

 

Had my first herceptin yesterday.

 

The nurse kept telling me there are no side effects, but they were keeping me for 6 hours 'in case.... ' 

 

When I got home I felt really sick, had a sandwich, which I forced down, and went to bed.  Was very nauseous and had a temp as well, plus diarrhoea so stayed there until this morning.  

 

A friend came to me to pick me up for T chemo round 1, and said that I seemed really breathless again. 

 

Got to hospital, but they were not happy with how I seemed.  Onc decided I might have a chest infection..... so no chemo for me today.  Ended up with 2 litres of fluid, and oral antibiotics to go home with.  Was given the choice to stay in, which I declined politely!  Had to promise to go to A and E if I wasn't feeling any better over the weekend.  

 

Love to all 

 

Georgie xx 

 

 

SallyG63
Member

Re: June 2018 Chemo Starters

So Had paclitaxel number 11 today. In and out very quickly because I didn't cold cap this week as I have a horrible sinus headache due to my cold and couldn't face it.
Kip
Community Champion
Community Champion

Re: June 2018 Chemo Starters

Wow so much information to take in, thanks Reddi and everyone else.   So perhaps I will find out my recoccurence numbers when they decide upon which hormones.  I know I am 8/8 ER+ but nobody mentioned progestrerone rating??  I guess that follows that they just focus on the oestrogen.  I only ever get told I have the "most common" form of BC and the nurse always says "that's really good" as if that makes me feel any better!!  I'm trying not to think too much about reoccurence and just get through the next op and then the Rads but it keeps popping into my head so not sure if I could deal with knowing the chances??  I'm a bit of an ostrich really!

Good luck for chemo girls today.. hope they all go ahead regardless of colds and peeling feet.  CDC I use Flexitol on my feets, its a cream which diabetics use but you buy it over the counter and it contains urea and is fab for dry cracked feet.  I suffer terribly with cracked feet and this really keeps it at bay.. doesn't smell that great though!

Kip

x

cdc1811
Member

Re: June 2018 Chemo Starters

Will give those a try. Thanks x
SallyG63
Member

Re: June 2018 Chemo Starters

Ooh I typoed Vaseline. ...it's making my eye twitch.
SallyG63
Member

Re: June 2018 Chemo Starters

HI,

Re the E45 I find it dries my feet out a bit more. I use vasaline intensive care or a special foot cream, nice a greasy called Palmers cocoa butter formula which helps.
cdc1811
Member

Re: June 2018 Chemo Starters

Just googled those trials Sally. They do look interesting. Might ask my onc whether i’d Be eligible after my mastectomy.