64991members
342407posts
cancel
Showing results for 
Search instead for 
Did you mean: 

August 2019 Chemo Starters

Highlighted
Member

Re: August 2019 Chemo Starters

Hi Shi,

 

try again...  had a quick read of the link re antihistamines and TNBC

i have had hay fever since i was around 15 every year and have always taken antihist for it.

 

ive also had bc twice and both have been Triple Negative.. unlucky i guess 🤷‍♀️🤷‍♀️
mini mad xx

Highlighted
Member

Re: August 2019 Chemo Starters

hi Shi,

 

Had a quick read re l

Highlighted
Shi Community Champion
Community Champion

Re: August 2019 Chemo Starters

There has just been a paper issued about antihistamine and tnbc, https://www.nature.com/articles/s41416-019-0636-x I’ve asked mai7 to put link in tn thread, hope this helps 💕💕✨✨Shi xx

Highlighted
Member

Re: August 2019 Chemo Starters

Hi Wolvesgirl,

 

yes i also read that TN responds well to chemotherapy.  Fingers crossed 🤞🤞

Maybe if i had decided to have chemo back in 2017,  i MIGHT not have had it recur.

we'll never know..

have a good weekend to you also.

we're off to Fuerterventura next wednesday just for a week... so looking forward to just getting away..
mini mad xx 💖💖

Highlighted
Member

Re: August 2019 Chemo Starters

Thanks Mini Mad

 

That trial is interesting and I note that phase one testing is due to finish in about a year so they are cracking on with it.  Its not that I don't think there is no more treatment but just that we have less options than the cancers that respond to targeted treatment but also TNBC responds well to chemo (I hope, having gone through all this) and that is what I am clinging to.

 

Have a lovely weekend and thanks for the info

 

 

Highlighted
Member

Re: August 2019 Chemo Starters

Hi Wolvesgirl    ( intrigued by the name ?? )

 

im also TNBC and have now finished my chemotherapy.

noticed in your post you mentioned there isnt anymore treatment available for us TN ladies once chemo ( and radio ) is finished.

there is a new trial bing tested right now for TN ladies.  It targets the cancer cells and destroys them before they have a chance to split up and divide.

try googling BOS172722 and check out the info.  Mini mad xx 💖💖

 

Highlighted
Member

Re: August 2019 Chemo Starters

Hi Spottycotty and everyone else

 

Spottycotty, Yes, great to hear everyone so positive at the moment!  We are nearly there.....  Glad to hear that SE not too bad for you at the moment but agree that the injections don't help in the making you feel good stakes.  I finished mine last night - I am only having five whilst on T rather than the seven I had on FEC which is a bonus and I can feel that my bone marrow is working hard this morning so neutrophils must be dropping which is about right for day 8.  I have to say I agree with you about the next stage - I will have an appt with the oncologist before my last cycle on 05 Dec for the referral to radiotherapy which I understand will be 15 + 5 boosts and then when thats done, presumably end January,  I should be starting biphosphonates twice a year.  I had a lumpectomy back in June and nodes out in July when they realised it was cancer not DCIS so the surgeon told me my next mammogram will be around then.  Being TNBC I am a bit nervous as am aware that there are not many options for treatment going forward after this finishes.  It does seem that people have very different regimes doesn't it?  But, I trust them so will go with the flow.  During the days when I have felt ill during chemo I have convinced myself that there will definitely be a recurrence but I have to get out of that mindset I think.  Hope the cheesy scone was good - sounds lovely.  Cheese is one thing that I enjoy whilst taste buds are dodgy.

 

Lisa - you will absolutely walk the surgery and so pleased that you like the surgeon.  Mainly pleased about your response to chemo which is great news.  

 

Blackcat - Hope you are enjoying the immaculate surroundings of your home despite the foul taste in your mouth - btw, thanks for the tip re jelly beans - they do work.  My mouth has been much better this time but things still taste funny - it lasts longer with the T I think.  Again, surgery will be very straightforward I am sure and will be a massive step along the road for you.  Re hair - yes, mine is growing back at a good rate, I didn't lose it all as you did so what was left is now longer and where there was none there is a covering.  As you, mine is the same dark brown (not much grey to be fair) it was before but where my hair was coarse and thick at the moment it is fine and thin.  I would imagine needing the wig for a few weeks yet but I am thinking sometime in January I might be able to get my hairdresser to do something with it.  I have continued to cold cap all the way through and will do for the last one as apparently it does aid regrowth but I am cheered that yours is doing it all on its own.

 

Stay safe everyone and hope that the side effects remain minimal for all. Much love xxxx

 

 

Highlighted
Member

Re: August 2019 Chemo Starters

Hi everyone,

 

Well everyone is sounding very positive at the moment, I love it!!

 

i had a full nights sleep last night which I’m amazed at and I’m currently still in bed!!! Feel good, this only happened as I mustn’t have suffered many hot sweats last night!!

injections start today though so I know it’s downhill till next week but it’s good to know it’s the last time.

 

my next appt is 10th December to see onc, he will then refer me to radiotherapy. I had my surgery before chemo, just a lumpectomy. Worryingly though I don’t get a scan of any kind at the end of all this!!  I will just get a yearly mammogram 😬

 

Anyway, hope everyone’s week continues to be positive, I’ve got to get up as I’m off out with mum for a warm cheese scone before my taste buds disappear too!!!!

Highlighted
Member

Re: August 2019 Chemo Starters

 

 

Hi Blackcat and everyone else.

 

well done on your last one yesterday!! 😃😃 hope the side effects are kind to you! 😘 

I went for an ultrasound scan on Tuesday and to meet the surgeon. I am so relieved that the chemo is doing what it should and the radiographer actually struggled to find any lump as it’s gone that small 😃😃 first time Iv met the surgeon and what a lovely lady she is. All the nurses Iv spoken to along the way have said how lovely she is and excellent at what she does. Meeting her has really put my mind at ease about the surgery part. 
hope everyone is ok.

 

Lisa xxx

Highlighted
Shi Community Champion
Community Champion

Re: August 2019 Chemo Starters

Black cat 👍😁👍👏👏🛎🛎well done ❤️ Your tea sounded lovely glad you enjoyed 😋 hair does grow back on t and if you have a downy face, leave it, it does settle down 😘 the op is a doddle after chemo, you will be amazed how quick your body recovers 👍 ❤️💕💕✨✨Shi xx

Highlighted
Member

Re: August 2019 Chemo Starters

Hi Wolvesgirl (and all on the thread),

 

Thanks so much for your good wishes.  I had my final chemo session today, so have my last load of docetaxel on board and will now just have to deal with the last lot of side effects.   I will continue with the antibody infusions (herceptin/perjeta) every three weeks for 14 more cycles, the first one being on 16 December).  When I got my new appointment card today, I saw that I have now been moved to the non-chemo clinic, which has shorter appointment slots (max 1.5 hours) and no paperwork to fill in (previously I had to complete a spreadsheet of chemo side effects for each cycle).  So it does feel as if I have reached a small milestone on the treatment journey.  

 

The next big milestone will be preparing for surgery in December, and I will have an appointment with the surgeon on 28 November to discuss options.  I was told at the start that the most likely option is a mastectomy, due to the location and shape of the tumour, so that is what I’m expecting (although I have had two breast MRIs - one after the first two chemo cycles of EC, and one after the next three chemo cycles of her/per/docetaxel - and the results of these will be fed into the MDT to determine the surgery options).  I know from the first MRI that the EC caused a reduction in the tumour, and although I don’t yet have the results of the second MRI, I can observe that the her/per/docetaxel have definitely softened the tumour, which previously was a hard area to the touch, but which I now can’t actually feel.  I will get the results from the second MRI on the 28th, and will find out what the surgeon recommends, and hopefully also a date for the surgery (which might well be Christmas week, as I was originally told it would be about 4 weeks after the last chemo).  

 

Due to the lack of sleep last night caused by the mega dose of steroids, my house is now extremely clean and I even managed to wrap quite a few Christmas presents.  The steroids have given my tastebuds a reprieve from the foul mouth taste, so I have just cooked and eaten a lovely meal (roast chicken with lots of vegetables, followed by fresh pineapple with cream then crackers and cheese).  No doubt my extra calories from tonight will be balanced out by the lean days to come when the docetaxel hits my mouth and digestive system (but at least it will be for the last time).

 

Has anyone else on taxane chemo noticed that their hair is growing back?  I lost all my hair during my first cycle of EC, but I started getting a bit of downy hair sprouting once I started on the her/per/docetaxel.  Now I have noticeable hair growing back all over my head, in the same chestnut brown colour it was before, but it seems to be a coming through slightly curly (as far as I can tell, as the little hairs are only about 6mm so far!).  It is nice to run your hand over your head and feel some hair rather then being as bald as an egg, even though I will obviously have to keep wearing my wig for a long time yet.  

 

I hope that everyone who has just had a treatment is doing well, and that any side effects are mild.  Love and hugs to all on the thread.

 

Blackcat xx

Highlighted
Shi Community Champion
Community Champion

Re: August 2019 Chemo Starters

👏👏👏🛎🛎🛎🛎🛎💃🏻💃🏻💃🏻🕺🕺💃🏻💃🏻🕺🕺🕺Aug thread are whoooop whhoooppp finishing chemo 👍👍👍😁😁😁enjoy it 😁😁😁💕💕💕✨✨✨Shi xx

Highlighted
Member

Re: August 2019 Chemo Starters

Hi Blackcat,


Just want to say all the best for your last chemo tomorrow- your last Docetaxil!  Bet you are thrilled you won’t need to have to put up with the awful taste changes any more after the next couple of weeks. 

Hope the house cleaning is going well - the steroid highs are an interesting experience to say the least!

 

take care and let us know how you get on xx

Highlighted
Member

Re: August 2019 Chemo Starters

Hi Spottycotty,

 

I hope that all went well with your final treatment today - it’s wonderful that you have got to the end of the chemo journey!  I hope that any side effects are minimal, or preferably non-existent.  Hopefully the psychological effect of knowing that this is the last cycle will help. My last one of the docetaxel/herceptin/perjeta is tomorrow (had bloods done today, so fingers crossed they are OK), so that will also be the final one of the six chemo cycles for me.  I will still have to have 14 three-weekly infusions of herceptin/perjeta over the next few months, but thankfully this is not chemo and so does not involve being immune-suppressed.

 

I am on pre-treatment high-dose steroids tonight and so am about to demolish the entire contents of the fridge (plus probably clean the whole house later, as I have four more steroids still to take and will likely be too wired to sleep). Isn’t it strange how the treatments affect our appetite and energy?  A few days ago the docetaxel foul mouth taste, warped tastebuds and dodgy digestive side effects were putting me off eating, but tonight my tastebuds are temporarily back to normal and I am ravenous, so I am going to make the most of it.  I hope that everyone has a good evening, and send hugs to all on the thread. 

 

Blackcat xx

Highlighted
Member

Re: August 2019 Chemo Starters

Go Spottycotty - well done!  Hope all goes well for you today. I think it’s Blackcats last one this week too.  Nearly there girls - will stick together until we are all done!  Just in side effects week here but not too bad - managing nausea much better which is making a difference. xx

Highlighted
Member

Re: August 2019 Chemo Starters

 
Whooo hoooo 💪🏽😃 @spottycotty you’ve done it! Hope your last one goes ok today and the side effects are minimal for you.

 

Lisa xxx

Highlighted
Member

Re: August 2019 Chemo Starters

Last one tomorrow ladies 👏👏👏

Highlighted
Member

Re: August 2019 Chemo Starters

 

Thank you Anna 

 

yeah Iv had a few aches and pains. No sickness 🤞🏽 Probably feeling more tired then usual but like you said once I’m doing stuff it tends to pass. Iv Still had my periods since starting chemo in August but this month it hasn’t appeared yet and it should Of.. could just be a bit late so we’ll see. Everyone’s experiences on chemo are so different aren’t they. One of the chemo nurses said that some people walk through it and others really struggle. 
i hope the side affects for you are minimum. 
Lisa xxx

Highlighted
Member

Re: August 2019 Chemo Starters

Hi 


@lisaloo79 wrote:

 

Hi Annagabanna

 

No need to apologise! We’re all here to help each other. Iv had mine the other way around. So Iv had 4 cycles of EC and just had cycle 2 of paclitaxel yesterday. 
I don’t know how often your having your Ec? I had mine every 3 weeks. I found that I had a week we’re I just didn’t feel myself then 2 weeks of feeling ok. I was pretty lucky in that I didn’t really suffer with sickness and still haven’t so far 🤞🏽 Just drinking  lots of liquids and trying to make sure I eat properly. I found in the first week after EC I had a bit of a fuzzy headed feeling which I’m not having so far with the paclitaxel.
How have you found the Paclitaxel? 12 weeks seems such a long time. Has it gone quick for you? I also still have surgery to have after chemo. 

Lisa xxx


Hi @lisaloo79 with weekly Paclitaxel I seem to have different sideeffects every week but manageable once I.e. joint/muscular cramps but is controlled by pain relief I normally take paracetamol first Day 3 before joint pains starts to show it’s ugly head. I barely take antisickness at home tbh so far maximum of 7 since week 1.  I am now on chemopause so hot flushes aren’t fun🙈 But I still do yoga and walk dogs to help my WBC count. Cumulative fatigue is a pain but once you manage to get yourself up and crack on withstuff class it’s as winning. I also have surgery after lumpectomy if my gene test comes out not BRCA. then rads ❤️ You’re the second person this week on EC that I spoke too who said it didn’t bother them. 
P.S. with Paclitaxel keep an eye on tingling of toes and fingers and always let your nurse know. I had a day of it last week on 3 fingers but it went so they were ok on the dose. Xx Anna


@lisaloo79 wrote:

 

Hi Annagabanna

 

No need to apologise! We’re all here to help each other. Iv had mine the other way around. So Iv had 4 cycles of EC and just had cycle 2 of paclitaxel yesterday. 
I don’t know how often your having your Ec? I had mine every 3 weeks. I found that I had a week we’re I just didn’t feel myself then 2 weeks of feeling ok. I was pretty lucky in that I didn’t really suffer with sickness and still haven’t so far 🤞🏽 Just drinking  lots of liquids and trying to make sure I eat properly. I found in the first week after EC I had a bit of a fuzzy headed feeling which I’m not having so far with the paclitaxel.
How have you found the Paclitaxel? 12 weeks seems such a long time. Has it gone quick for you? I also still have surgery to have after chemo. 

Lisa xxx


 

Highlighted
Member

Re: August 2019 Chemo Starters

 

Hi Annagabanna

 

No need to apologise! We’re all here to help each other. Iv had mine the other way around. So Iv had 4 cycles of EC and just had cycle 2 of paclitaxel yesterday. 
I don’t know how often your having your Ec? I had mine every 3 weeks. I found that I had a week we’re I just didn’t feel myself then 2 weeks of feeling ok. I was pretty lucky in that I didn’t really suffer with sickness and still haven’t so far 🤞🏽 Just drinking  lots of liquids and trying to make sure I eat properly. I found in the first week after EC I had a bit of a fuzzy headed feeling which I’m not having so far with the paclitaxel.
How have you found the Paclitaxel? 12 weeks seems such a long time. Has it gone quick for you? I also still have surgery to have after chemo. 

Lisa xxx

Highlighted
Member

Re: August 2019 Chemo Starters

From September 2019 group Like what Shi said I admire how everyone is so positive here ❤️ @lisaloo79 also TNBC diagnosed 21st of August. Approaching week 10 of Paclitaxel and last cycle of Carboplatin ❤️ I plan to go back to work after the last cycle of EC before. Surgery but my Oncologist seems to be unsure it’s poss. I’m a scrub nurse but my work will put me on admin duties.  I am dreading the EC which I start on December😓any tips? Sorry for hijacking your thread🙈


@lisaloo79 wrote:


Thank you Shi 😘😘 and Spottycotty I Hope you enjoy your party and that your not to bad after your final one on Tuesday! 
I too haven’t had any alcohol either. I’m sure it will taste all the better for not having any for so long!  

take care everyone and I hope you all have a lovely weekend. Lisa xxx


 

Highlighted
Member

Re: August 2019 Chemo Starters


Thank you Shi 😘😘 and Spottycotty I Hope you enjoy your party and that your not to bad after your final one on Tuesday! 
I too haven’t had any alcohol either. I’m sure it will taste all the better for not having any for so long!  

take care everyone and I hope you all have a lovely weekend. Lisa xxx

Highlighted
Member

Re: August 2019 Chemo Starters

Look after yourself Lisa.

 

We are off to a party this weekend, it’s my last one on Tuesday, dreading it but will be glad when it’s done, I’m also looking forward to having a glass of wine when recovered, I’ve not had a drop of alcohol since June!! 

Have a good weekend everyone xxx

Highlighted
Shi Community Champion
Community Champion

Re: August 2019 Chemo Starters

💪💪💪🥊🥊💪💪💪👍👍👍brilliant beautiful aug thread. Keep focused you glorious people ❤️❤️ Do you know how fantastic you all are? Because you are, when you look in the mirror tell yourself how fabulous you are ❤️❤️ 💕💕✨✨✨Shi xx

Highlighted
Member

Re: August 2019 Chemo Starters

 

hi Wolves girl.

 

I think it’s only natural to have downers I get days like that too.. we are all doing so well though and although our plans are very different and we’re at different stages we are all getting there. I hope your doing ok after number 5. Iv had my second Paclitaxel today. I came home and had to have a snooze as I felt so tired... still do now so I think it’ll be an early night tonight for me. 

big hugs to all xxx

Highlighted
Member

Re: August 2019 Chemo Starters

Hi Lisa

That is such a positive way to look at it - Christmas is a useful focal point for us in our group I think - over half way is a massive point in the journey.  I had number five of six yesterday and am thinking that this time in three weeks all will be complete (fingers crossed).  I will be finished before the Strictly final!  I had a bit of a downer last cycle but have a plan in place to control the physical symptoms which impacts on the psychological when all I can think about is having cancer and the worst case scenario.  So, they gave me Amend this time which they don't usually with Docetaxel and I told the chemo nurse my plan for preventing nausea and heartburn which she approved of.  So, fingers crossed!  Have a lovely weekend xxx

Highlighted
Member

Re: August 2019 Chemo Starters

 

Hello wolves girl. 

Yes it’s number 2 tomorrow. I blinked and that’s a week gone already!.. Just taking each week at a time. By the time Christmas is here I’ll be over half way 👍🏼 

Lisa xxx

Highlighted
Member

Re: August 2019 Chemo Starters

Hi everyone

Great to hear all the news and thanks for the info re the flu jabs.  I went and had mine today but forgot to ask about the pneumococcal and she didn't mention it.  Still, happy to have had this one which I am sure will do the trick.  I know Australia had a bad flu season which normally means we will so its worth doing.

 

Blackcat - I am told by the chemo nurses that the mind does rather block out the more unpleasant days in the same way that people forget what being in labour is like until the next time!  Clever old thing, the human body.  So well done on nearly getting to the end - you were our advance party in all this weren't you?  Do you think you will have surgery before Christmas?  I am sure that the worst will be over after your last chemo and you will sail through the surgery.  Are you having a lumpectomy or a mastectomy?

 

Julie - I agree, surgery is scary but not as bad as chemo to me either - this has to have been the most challenging thing I have done in my life and I genuinely could not have done it without this forum.  I  have had my surgery but to be honest it was a doddle compared to this and I am hoping that the same can be said of radiotherapy.  You have been through it haven't you with the need for transfusions - I bet you can't wait until the 28th for the last cycle.  I understand re the flu jab if you have never had it - I have for the last few years as there is significant pressure to have it if you work in the NHS (its incentivised for Trusts) but I have also had flu three times and don't want it again so its each to their own I think.

 

Spottycotty - Your scars sound like mine, I can hardly see the one on my boob (its on the bottom half way between the nipple and the chest wall so you have to look hard) and the one where the nodes were taken is just a smiley shaped one!  Have you had any twinges near the latter?  I do occasionally but apparently that is normal so I am not worrying about it.  Your experience of docetaxel is similar to mine - day four is the downhill day and I perk up about a week later (hopefully less).  You are so close to the end too - who would have thought we all would get here?  It seems in some ways to have gone so quickly.  Re the flu vaccine, when our grandson had leukaemia he could not be in school the day the others were having the nasal spray as it was live so he got a day off.  Now he just has it the same as them.

 

Lisa - I know you have until January but you are right, it will be over before you know it and at least you are not floored by side effects so that makes it seem a bit better I am sure.  I am feeling more tired now but I think it cumulative.  Well done on keeping so positive - it is a difficult road at times.

 

Much love to all and well done. xxx

Highlighted
Member

Re: August 2019 Chemo Starters

I rang my gp and asked for it for them. 
they are definitely entitled to it Lisa.

worth it I think.. 

Highlighted
Shi Community Champion
Community Champion

Re: August 2019 Chemo Starters

Stick on dots 😳not fits sorry predictive text 💕💕✨Shi xx

Highlighted
Shi Community Champion
Community Champion

Re: August 2019 Chemo Starters

Bag for surgery, button front pyjamas with short sleeves, dressing gown to wear over your op gown, pair of sliders/flip flops to wear while in hospital, lip balm and hand cream it gets dry in hospital, anosol (the op meds can bung you up) for after found a zip front bra with racer back from M&S worked well, go up 2 sizes you will be little swollen after. I used stick on fits on the door frame so I could see daily my progress with the exercises, do gentle and as your team instructs and your movement range will return ok. Hope this helps those jumping to surgery, we all bounds to surgery and rads thread but our chemo thread was our home thread where we all kept in tough right through ❤️💕💕✨✨Shi xx

Highlighted
Member

Re: August 2019 Chemo Starters

 

hello everyone

 

lovely to hear from everyone and catch up on how everyone’s doing. Julie I hope your next cycle doesn’t get put back.. keeping everything crossed for you. 
although Iv still got until the end of Jan to go with chemo the way these weeks are flying over I’m sure I’ll be there before i know it. At my last clinic appointment they said that the weekly pax is a low dose.. I’m on day 3 now after my first pax on Friday and apart from a few aches and pains and feeling tired im feeling ok and enjoying not having that horrible fuzzy head that the EC gave me. 🤞🏽 

I’m going to check about the flu jab as the breast care nurse told me the flu jab should be given before chemo but to check at my next clinic appointment. I wonder if my kids could maybe get it if I can’t. 

big hugs to everyone 

Lisa xxx

 

Highlighted
Member

Re: August 2019 Chemo Starters

Ahh Julie, you really have been through the mill haven’t you!!

Fingers crossed the tumour has shrunk, are you having a full mastectomy or just the lump removed?

i had lumpectomy before chemo, I have to say I’m pretty pleased with my scars now, they are literally just a line, one on my boob and the other under my arm where the nodes were taken.

 

The last round I had of docetaxol was pretty much the same as the first, felt okish till day 4 then just felt pretty awful until day 8/9. 
My last round is 19th nov, everyone tells me I should be pleased about this,which, of course, I am, however, I don’t feel overjoyed like I expected earlier on, I just think there are no guarantees that I will never have to do this again so I darent be complacent and celebrate if that makes sense. 
My husband and children have been given the flu jab as I have a low immune system, although they wouldn’t give the children the nasal spray as they say it’s a live vaccine and would affect me, that went down like a dream as you would expect 🤣🤣🤣 they were not impressed at all!!!!

 

Anyway, hope everyone is ok and feeling positive ... nearly there 💪

Highlighted
Member

Re: August 2019 Chemo Starters

Hi everyone

 

Great to hear everyone sounding so positive!  Yes, we're all approaching the next stage of our treatments now - although the thought of surgery is scary, it can't be any worse than the chemo in my opinion.

 

I had my 5th Docetaxel (+ Carboplatin + + +) last Thursday but unfortunately had to have another blood transfusion the following day.  The hospital told me that would be needed earlier in the week, so it wasn't a result of the 5th treatment but the one before when I had to have a week's delay due to low platelets.  So if it's not platelets it's anaemia for me it appears!  Still, going to get through this and out the other end - my 6th and final chemo is due on 28 November and, like Blackcat, I really hope the bloods will be OK.  I'm finding the fatigue is worse now, although it does come and go.  I have an appointment with the surgeon next week when I'm hoping to be told the lump has reduced and then I'll be given a date for the surgery.  I'm not getting too excited as I thought it had shrunk when I went to my last ultrasound and was SO disappointed when it hadn't (well, hardly).  The psychological effects of all this are becoming more of a reality for me now - but need to soldier on and we'll all get there.  I am still in my first week though, so as others have said I'm probably just forgetting how it gets better by Week 3.

 

No-one has suggested I have a flu jab, so I haven't had one (or pneumonia).  I think I'll give it a miss as I've never had one before and if I can get through the next few weeks hopefully won't need one.

 

Love to everyone - we really ARE getting there!

 

Julie xx

Highlighted
Member

Re: August 2019 Chemo Starters

Hi Wolvesgirl and everyone,

 

It’s great to hear that you enjoyed your trip away!  It’s true that when you get to week 3 of the chemo cycle and feel well, you can hardly imagine how you felt at the lowest points of week 1.  I guess our minds blot it out.  Won’t it be wonderful when our lives are no longer governed by the three weekly chemo cycle, and we will be able to plan things normally again!

 

I had my flu jab at my GP surgery a few weeks ago, having been told by my oncologist to get it a couple of days before a chemo treatment when my neutrophils were high.  I was told by the nurse giving me the jab that it can make your temperature rise for a few days, and my temperature was indeed higher than usual when I went for the chemo (but as it was still only 37.3, it was fine to have the chemo).  I was also offered a pneumonia jab, but did not have it on the same day as I wanted to check it was OK with the oncologist.  It is OK, apparently, but I have not had it yet as I couldn’t get a slot with the GP at the right point in the chemo cycle.

 

It’s great to see how all of us on this thread are slowly but surely getting through our treatments.  I will have my last chemo on 20 November (fingers crossed that bloods are OK), which is now just a week on Wednesday!   I also have a breast MRI this Wednesday to assess the effects of my second chemo regime and provide information for the MDT (in particular relating to the options for surgery), and then I will have an appointment with the surgeon on 28 November.

 

I hope that everyone will have a good week, and wish everyone who is having a treatment this week all the very best.  We are all getting there, and the light at the end of the tunnel is definitely visible.  Love and hugs to all.

 

Blackcat xx

 

 

 

 

 

 

Highlighted
Member

Re: August 2019 Chemo Starters

Hi Lisa and everyone

 

Hope all are well - Lisa, sounds like you are doing well following paclitaxel - I do hope that has continued.  

 

All good here, had a lovely couple of days down in Hampshire with my eldest stepdaughter and her three boys aged 9,7 and three (husband was away sadly) which was just so nice to not be here and not thinking about cancer.  I felt OK, got a bit tired but nothing special.  On the way back we called into the village I grew up in which is in Bucks to put flowers on my parents and grandparents graves.  I always love going back there, such happy memories.  Then a great lunch with really good friends on Saturday in a tapas bar in town so a good few days.  Now, three days away from docetaxel number two and overall number five of six so the light at the end of the tunnel is beginning to show.  I have a call with the chemo nurse on Wednesday but I hope all will be well and I can carry on as planned. Isn't it funny that when you feel better in week three, its hard to remember how rubbish you felt in week one?  Still, we are getting there girls and this will all be worth it.  I have booked my flu jab for tomorrow - anyone else had theirs?  When I was working it was easy to get but its a bit more problematical now but its worth doing.  

 

Take care and much love, xxxxx

Highlighted
Member

Re: August 2019 Chemo Starters


hi everyone.

 

hope everyone’s ok and enjoying any time  your getting feeling well enough to get out and do things. 

I had my first paclitaxel on Friday and I’m feeling very tired but apart from that and a bit achy im not feeling too bad. No steroids to bring home with me this time so actually got a good nights sleep last night.. amazing how much it helps getting a decent nights sleep!

no fuzzy head like I got from the EC either 👍🏼

big hugs

 

Lisa xxx 

 

Highlighted
Member

Re: August 2019 Chemo Starters

Hi Blackcat and everyone

 

So good to hear everyone sounding positive as we travel along this chemo road.  Julie, you are right I think, I am becoming aware (at least I think I am) of when my neutrophils are low as I have increased sternal and low back discomfort and I agree that is when you need to rest a bit.  Yesterday was day 7 and I began to feel a bit better although still nauseous in the evening - I am convinced its the injections!  Blackcat, you sound as though you have a great plan to get back to normal life - I for one am really looking forward to getting back to the gym, seeing my friends and getting fit again.  I feel so unfit, just walking up the hill to the village leaves me lightheaded!  But hey ho, I think I am turning the corner and am looking forward to a couple of relatively normal weeks before cycle five.  Then I think I see the oncologist before cycle 6 to talk about radiotherapy and possible biphosphonates.  

 

Blackcat, thanks for the tip re jelly beans - always worth a try.  I have found over the days when eating has been hard that scrambled eggs is a real treat too!

 

Love and hugs to all xxxx

 

 

 

Highlighted
Member

Re: August 2019 Chemo Starters

Hi JulieME (and everyone),

 

I’m glad to hear that your fourth docetaxel (plus other drugs) treatment went well.  The timings of the side effects for this treatment are strange, aren’t they - in the first few days eating is OK, then the foul taste arrives and food seems repugnant.  I had my fifth treatment yesterday (docetaxel/herceptin/perjeta) and am of course currently high on steroids, so am starving and have to keep raiding the fridge.  I know, though, that in a few of days I will probably be struggling with the foul mouth taste and finding it difficult to eat, although I don’t actually feel nauseous. My oncologist suggested to do exactly what you are doing - to eat as well as possible in the parts of the cycle when you can, so as to make up for the days when you eat less.  My weight is going up and down across the cycle too, but on weighing in day before treatment, I have always managed to be about my original weight.  Other than having red hot steroid cheeks, at the moment I am feeling well and don’t have any other side effects, but I will be doing the first filgrastim injection tonight and so no doubt some bone pain will kick in, probably to be followed by some digestive disruption!

 

I have found something nice to help with the foul mouth taste - a friend who previously had chemo sent me a tin of jelly beans (Jelly Belly, but other brands are available) which she said had helped her - because they are small and have quite a range of vivid tastes, they are good at freshening up the mouth and cutting through the grim taste.  I tried out a few (quite a few, if I’m honest) of the beans over the days of the last cycle, and was surprised to find that they do work well.  Unfortunately friends and family keep pinching them, so I will need to get a new bag to fill the tin!

 

I now have just one more chemo treatment to go (No 6 on 20 Nov), then will see the consultant surgeon on 28 November to plan for surgery in December.  After that I will still have continuing treatment of 14 three-weekly cycles of herceptin/perjeta infusions, but as these are antibodies and not chemo, there is no need to be immune-suppressed or to have frequent pre-treatment bloods tests, so the oncologist says it should be possible (hopefully, if surgery goes OK) to get back to working full-time around early February.  I will need to see how things go, of course, but it is giving me hope to think of the possibility of returning to something of a normal life in the not too distant future.  I really miss my job (I work for a charity supporting people living with dementia and cognitive impairment), and I have found it hard to be signed off totally during treatment due to infection risk, as a lot of my work is based in GP clinics and other frontline healthcare settings. 

 

I hope that everyone is having a good day with the least possible side effects, and that everything will go well for anyone with an upcoming treatment or appointment.  We are all making progress through the treatment journey, bit by bit, and the light at the end of the tunnel is getting closer.   Love and hugs to all.

 

Blackcat xx

 

 

 

 

 

 

 

Highlighted
Member

Re: August 2019 Chemo Starters

Sorry to hear Docetaxel isn't treating you kindly, Wolvesgirl.  I had my fourth of that (plus others) 2 weeks ago, and I was surprised it was the easiest to cope with so far.  I think I may have just got used to the nausea, as I was told it was likely at the beginning so didn't expect to get away with it!  I found I could hardly eat (each time) from Day 5 to Day 8 and SUCH a foul taste in my mouth didn't help (I think Blackcat mentioned that).  Then from about Day 10 I felt better, and had to seriously start eating to regain the weight I'd lost before being given the next treatment.  The chemo fog lasts a bit longer with me - I've found one of the worst things about all this is not being able to think clearly.  I feel I'm likely to make mistakes, so I check and double-check everything - then STILL make the mistake.  

 

So I'll be having my 5th Docetaxel (+ Carboplatin + Herceptin + Ptsumababababbabbthing) on Thursday next week, provided my bloods come back OK... which I really hope they do this time.  I've also now been given an appointment with the surgeon (having op after 6 chemo cycles) so progress is being made.  Don't forget it's important to rest while your body is re-making your platelets etc - I think that's where I may have gone wrong before.  Good luck to everyone having treatments this week (and everyone else of course).  Julie xx

Highlighted
Member

Re: August 2019 Chemo Starters


Hi Wolvesgirl

 

Sorry to hear you’ve had a rough few days but glad your feeling a bit better today. I’m feeling pretty much back to myself now after my last EC. 
it’ll be the end of January before I’m finished this chemo journey but if it’s anything like the last 3 months it’ll fly over! I’ll just have to try and take each week as it’s comes and once I’m half way then I’ll start counting down. 
Were all at very different stages in our treatment but we are all getting there ladies 💪🏽 

hugs to all 😘 xxx

Highlighted
Member

Re: August 2019 Chemo Starters

Hi everyone

 

Good to hear how everyone is getting on - Spottycotty and Blackcat, by the time you read this you will have had your fifth cycle and be well on the way to finishing.  So pleased you had a good weekend away Spottycotty, it must be such a mental lifter to do and see something different.  I agree re getting fed up of this ruling our lives - Lisalou - I know you have several more weeks to go as well but you will smash it.  I think you adapt psychologically to what treatment you know you have to have and get that fixed in your mind.  We will all be in a position where we move onto the next phase, be it surgery or radiotherapy in due course and I think (in my case) that will be a breeze compared to the chemo.

 

I have had a challenging few days with side effects of Docetaxel - very disappointed to have had nausea but also significant heartburn and some abdo pain, and the fatigue is overwhelming!  I have literally done nothing for three days - today is the first day I have opened my laptop and actually done something (though not much).  For me to be off my food is unusual but the thought of eating anything other than ginger biscuits has been too much.  Hopefully that means I am on the mend and can get on with my coursework tomorrow when my brain is a bit more together.  I am going to try to go for a short walk this afternoon with my husband as I am sure that will help.

 

Wishing you all love and best wishes and looking forward to hearing your news xxxx

Member

Re: August 2019 Chemo Starters

Hi Spottycotty,

 

Glad to hear that you have had a nice weekend away (as I’m in York, you’ve been in my neck of the woods!).   All the best for your Treatment No. 5 tomorrow.  I have my No. 5 on Wednesday, and  I know what you mean about it all wearing a bit thin now.  I think that as the cycles go on, it’s natural to feel a bit tired of having our lives governed by the chemo cycle and its side effects.  I have just got back from an echocardiogram, and when I was waiting (the clinic was running late) I looked at all my past appointments on the calendar on my phone - I seem to have been at the hospital 42 times since I was diagnosed in July, if you include short appointments for bloods etc!  So the end of the chemo treatment can’t come quickly enough, even though I know that there is still a long way to go as I will have surgery following chemo.

 

After we have had Treatment 5, there is only one more to go, so we are getting there and soon will see the light at the end of the tunnel.  Fingers crossed for no infections in the final two treatments.  

 

All the best to everyone on the thread.

 

Blackcat xx

 

 

Highlighted
Member

Re: August 2019 Chemo Starters

Hi,

 

Hope everyone has managed to enjoy the weekend. 
we’ve had a nice weekend away in a log cabin just outside of York, very peaceful, just what the doctor ordered!!!

got home today feeling a big down as it’s chemo day tomorrow but my lovely friend has posted me a card full of motivation for me to find upon my return, it’s so lovely.

so number 5 of 6 for me tomorrow, it’s all wearing a bit thin but definitely getting there now....

Wolvesgirl, how are you feeling???

Lisaloo, it does sound like a long road ahead but hopefully it will fly by and you’ll be at the end before you know it...

 

Hoping everyone else is ok too xxxxx

Speak soon, hoping to not get an infection this time round 🤞🤞🤞

Highlighted
Member

Re: August 2019 Chemo Starters

Thanks Shi

Granny visit will be very much under control - eldest grandson (now 9) had leukaemia just before he was three so whole family down there very geared up to risks of immunosuppression and being exposed to new germs.  I won't be allowed near if any colds or school bugs around.  Granny from a distance!!

Highlighted
Member

Re: August 2019 Chemo Starters


morning Wolves girl 

 

glad to hear your ok after your Treatment. I’m now 7 days post Ec so fuzzy head has lifted and started to feel more like myself again. My mouths a little bit sore this time round but making sure I keep it washed out with mouth wash and also got my freshly chopped pineapple in the fridge too. 
Iv still got 12 weeks of paclitaxel to get through so still a long way ahead for me.. although I can’t believe how fast it’s gone since my first treatment on the 16th August! 
Iv got out for a walk the last couple of days but it’s pretty bleak here to today. No rain but very cold. 
hope everyone’s ok.

Lisa xxx

Highlighted
Shi Community Champion
Community Champion

Re: August 2019 Chemo Starters

Hi wolves girl 😁 if you get the t ‘slime mouth’ fizzy water has helped others 👍 if you get hurricane botty up your carbs and bit of Imodium 👍 you are doing great 💪💪💪 when you are on granny visit just be careful ❤️ And have a lovely time ❤️😘💕💕✨✨shi xx

Highlighted
Member

Re: August 2019 Chemo Starters

Morning All

Thought I would message whilst still on steroid high after my first Docetaxel yesterday.  All went well - still cold capping which adds time on but not as much as before but it probably works out about the same as the infusion takes longer than the three bolus meds.  Felt fine last night and slept well and so far the same today, however am aware that the next two days will probably see a dip once the steroids wear off.  

 

I only have five days of GCSF jabs this time instead of seven and have the antibiotics to start next week but thats it unless I need antiemetics in the meantime.  Some taste changes noted but so far not too bad.  

 

Fingers crossed that these three cycles are better than the last three.  Still hoping to go away in a couple of weeks on granny visit to Hampshire.  

 

I really hope you are all well and getting through this - we are nearly there, I think I was last to start and have two to go so well done us!  Have a great weekend - already pouring with rain here so an in day I think - the dog certainly thinks so!!

 

WG xxxx

Highlighted
Member

Re: August 2019 Chemo Starters

Hi Julie

 

Thanks for the reply - glad to hear that you are not suffering more each cycle.  I found that with the three FEC cycles - the first was awful and I was in hospital for a week but the other two, whilst unpleasant, were manageable.  Just hoping the Docetaxel will be the same and not be cumulative.  I agree, I would have been really disappointed to have a delay for a week and I hope that won't happen to me but your body clearly needed the extra time and I am sure that you had a better experience because of that additional week recovery.  Nearly there - keep well and as you say, we will all soon be looking back on this as a memory! xx

Highlighted
Member

Re: August 2019 Chemo Starters

Hi everyone, and thanks for sharing your Docetaxel experiences. It sounds like we're all suffering similarly - although as I think I said before, I've had no nail problems and am only moisturising them with plain Nivea cream.  I had my fourth Docetaxel cycle last Thursday (with all the other drugs I'm having) and have only just starting going 'downhill' today (Day 5).  I guess I'm used to the symptoms now as I haven't been on another regime but, so far, each time has NOT got worse... so please try not to worry.  I had to have a week's delay last time because of low platelets and, although it was annoying and a bit upsetting to put the whole course back, I'm now thinking it might have actually helped - a short break to give my body a chance to get a little better before the next onslaught.

 

I do agree it's constant adaptation - with what drugs we're taking to ward off nausea etc, best foods to eat, sleeping/resting etc.  Each cycle I've thought I could predict what was going to happen next, and then something else happened instead!  You're right though, Wolvesgirl, we are definitely getting there... it did seem like too huge a mountain to climb in August, but I'm starting to feel we're reaching (or have reached) the peak and it's downhill from now.  And we WILL all get through it - this time next year we'll be laughing about how many medical terms and names of drugs we learned, even though we'll have forgotten them all by then.

 

Good luck everyone, Julie x