May 2017 chemo starters

[treehouse]

They will need you tip top before surgery Mai. Can't risk you getting an infection with low count.

[WolfEE]

Rosie, I think this does happen if the lump stops responding and shrinking then they stop and go straight in with surgery I guess from the chemo has done as much as it can then another poisoning is not worth it as it will just damage healthy parts in your body and make you feel sick and just stop the C growing but not shrink so better just cut it out and get rid early.
It must be worrying being told that it's not shrinking let's stop but I think it's actually far more common than you think and it happens 2 many of us just we don't have the ultra sound or a mid one to compare it against.
Don't panic it has responded the chemo has done some magic and the surgery will take the last of it away. Xxxxxxx

[Mai7]

Thanks for your support ladies. 💞 I was very surprised by this as I felt really well. It just shows how little we can judge neutrophil health based on general health. I read an article which suggested the most important assessments are temperature, sore mouth and sore bum hole!  They don't plan to do anything this week, other than watchful waiting on temperature and signs of infection. I asked what the options are next week if my neutrophils haven't picked up and it was suggested this could be injections and/or reduced dose of chemo. I'm guessing they don't want introduce injections this week as they want to assess a baseline of what the body's natural recovery is??  My regular Oncologist is away this week so Im feeling there may be a passing of decision making until his return.  The Oncologist said extended neutropenia is quite common at this stage in the chemo and there are several patients in the same position, on extended delay. They don't seem too concerned at this stage. The chemo has had a positive impact so far. I wish they could just cancel the rest of the chemo and bring forward the surgery if the signs of cancer remission are positive but I don't know how they measure the risk for surgery at this stage without a biopsy or MRI.  I'm thinking has the cancer shrunk or died? So many unanswered questions!

[treehouse]

Rosie. Just re read your post about blood transfusion. Sorry I missed that, how are you feeling? This is so hard as we come into the home strait.
This stuff is toxic and our bodies are just crying for a break. I hope you get an appointment soon.
4 days of steroids has definitely had an effect on me, that and docetaxel. I have been a blubbering mess for days and have upset my husband. My kids have now gone out to friends as they are so bored here.
Feeling very low. 😥

[Rosie65]

Oh no Mai7 that is really frustrating, no wonder you're fed up. It seems the closer we get to the finish line, someone keeps moving it

[Raitchr]

Mai7, I am on Co-trimoxazole 480mg 1 tablet daily for 21 days. Sorry to hear you have had a delay.

WolfEE, I was about 3 weeks after mx before I had a bath and it was shallow, not laying down and soaking. Had to wait until I could hoist myself out without pulling any stiches. After 6 week check up and already being discharged from physio I started having a proper soak.

H

[katie11]

Oh mai how frustrating! Can't they give you anything to help?

Just back from no.7, x2 to go!! My mum has taken boys to park for afternoon so I can have ever a nap and cup of tea in peace. Gosh can't wait till they are back in school x

[WolfEE]

Mai, no way I wasn't expecting that for them to drop even lower and you'd started feeling much better. Yes I had read something about the injections not helping after I had my overdoes I was also seeing how it could interfear with my blood clot so I put the instructions away!!
So another week wait. Could they do a blood test mid week or a couple of days? How frustrating. Is this all recovery from your infection or a new drop?
Xxxxx

[treehouse]

Oh Mai NO!!!!
Can't they give you anything? How do you feel?

Reading the injections side effects yesterday it could be that causing my low platelets grr. So frustrating

[Mai7]

Big hugs to you WolfEE and Rosie as you remember and miss your dear Mum today. I'm sure your Mum would be very proud of how strong you have been. Keep soldiering on buddies. 💗

Rosie, your treatment plan sound as annoying as mine at the moment. So frustrating isn't it? 💗

I just got got back from Oncology appointment. I'm delayed a second week as my neutrophils have dropped again from 0.96 last week to 0.87 this week! So fed up with it all. 

Raitchr, what dose and type of antibiotics are you on? 

[WolfEE]

I have a smallish coffee mug from Ikea that I keep in my Epsom tub. I used 2 put two mugs per bath and one mug per foot soak. But that's when I used only once a week on the bath and one or two foot bowls.
Now as I'm using more and to keep cost down I'm only putting one mug in the bath. After chemo I'll cut back number of baths and go back 2 having the weekly Epsom soak with tonnes in.
I'll miss my bath soaks after I have my surgery anger mastectomy and lympth node clearance how long until you can soak in a nice full bath again???

[treehouse]

My bag of Epsom salts gives different quantities for different baths. It does say put up to 1kg for muscle treatment but that would be the whole bag!!!!!
I tend to throw in a couple of big handfuls.
I still have half a bag left so I am not overdosing and I feel better. I only use it a couple of times a week.
I even bought a nice glass jar at the car boot sale last week to store it in😊

[Raitchr]

Misyangel, I use roughly 2 tablespoons in the bath daily in 1st week of chemo them every other day if I remember. I try to soak for 20 mins but depends if I have time. Your body will absorb what you need. If you are on T then bowels are more loose than on FEC and Epsom salts cure constipulation so have to get the balance right! 

I am also on 21 days low dose antibiotics each cycle, which seems to keep bugs at bay and help bloods. This is the choice my NHS trust follows to prevent admission to ward and using a bed. So far so good, only 1 cycle to go so has worked for me.

H

[treehouse]

Thanks Jay.
Nice to know it's not just me.
X

[Jay68]

Treehouse - I get really weird dreams in the week following treatment - it must be connected!!!

[busybeeS]

WolfEE, thinking of you today. Xx

[misyangel]

Heather how much epsom salts do you put in the bath.? Also noted that you don't have injections very strange you white blood cells must be good lol

Rosie65  I would feel a bit anxious is they reduced your chemo by one as at least if you have the full amount know you have done everything but I supposed these people are the ones in the know so we trust what they say.  That is really good that they got you an ultrasound so quickly

Wolfee sending big hugs ref your mum

Busybee good luck today and I agree it isn't over till the 3 weeks after chemon once over all side effects lol

[treehouse]

Sorry continuing.....
Yesterday I got a letter for a CT scan on 14 September.

Also DREAMS: is anyone else getting crazy dreams? Some are just weird others are flashbacks to all the needles etc. Is this from the drugs or a sign of my mental state?

[treehouse]

Oh wolfee sending hugs. Going through this makes anniversaries like that more acute. I hope you can find some happy moments today.

Rosie these appointments just seem to confuse us sometimes.
I was going to ask about scans post Chemo/ pre surgery. I was originally booked an MRI last week but that got cancelled when I decided I wanted double mastectomy ( fair enough they cost a fortune)

[Jay68]

Thank you Raitchr - so reassuring to hear from someone who has already been through what I'm about to embrace and hear positivity. Have you heard of knitted knockers? J x

[Raitchr]

Jay68. I am getting on ok with a softie. I am going for a prosthesis fitting in Sept sometime when I make the appointment. It does get annoying sometimes as it feels like I have a pair of socks in my bra. To be honest I would be happier if I got rid of the other boob too and be totally flat. It can be difficult to match boob and softie for shape so you have to think about what you wear and I tend to wear more patterned tops now so to hide any shape difference. I used to wear strappy dresses in the summer with some cleavage but avoid that now as softie doesn't give to the same look.  I am happy that I had Mx, it has healed well and I have just got on with it.

H

[katie11]

Big hugs wolfee xx

[Rosie65]

Thinking of you today WolfEE. It doesn't get any easier does it? My mum passed away 25 years ago, I was quite a bit older than you though. Must have been very tough.

Good luck to all on treatment today esp if it's your last one.

Had a busy couple of days. Saw onc on Monday - 4th different one in the last 12 weeks. She wasn't going to examine me but I had noticed swelling, discomfort in the breast and armpit so she agreed to look. She said she thought lump was 2cm but it had been 1cm since June so she arranged an ultrasound. Luckily they had a cancellation so had ultrasound yesterday, lump hasn't grown or shrunk and is the same size as when I had previous ultrasound in June. So they may just do 3 cycles of Carbo/Taxol instead of 4 and bring surgery forward as I'm having mx anyway. But ultrasound dr will have to give onc the report so not sure when I'll know.

She couldn't see anything in the lymph nodes thankfully.

Also red blood count has dropped again so need 2 units of blood, but it seems most hospital staff are on holiday so haven't got a date, I'll just turn up for chemo tomorrow and see what happens.

Have caught up on all your posts and agree that it is really dragging now, not sure if I'll be happy with 3 more weeks and surgery or if it's better to have the six weeks as originally planned, will always be worried that I was under treated.

Hope you're feeling better today treehouse. I find it quite annoying when everyone's in the house but when I'm on my own I get quite lonely, so basically they can't win ha ha. Am working from home today to take my mind off things.

[Jay68]

Hi Raitchr - I'm not able to have any reconstruction for 12/18 months following mx - and I'm exactly in the same mind as you - don't want it as just want the cancer to be gone. You're obviously getting on OK with your choice? Sorry but I'm interested as this will be me pretty soon! x

[Raitchr]

Thinking of you WolfEE, big hugs. ❤

H

[WolfEE]

Remembering my mum. 26 years today it stil feels like yesterday (I was 11 years old) xxxxx 😞❤️

[Raitchr]

Good luck everybody on treatment today. I have Onco on Friday afternoon so quiet week for me

Heather.  

[katie11]

Good luck MJK and Mai. Gosh busy treatment day for us all today x

How you getting on rosie and Trish x

[katie11]

Here here treehouse! Good luck busybees xx

Off for no 7 weekly!! 2 to go after today xx

[treehouse]

Thinking of you today busy bee.
May your veins be plump, your drugs arrive in time and your side effects be manageable. We all want to be you today!!!
😀😀😀😀😀😀😀
Good luck with treatment and appointments today MJK, Mai ( I think )

[busybeeS]

Hi Jay, yes - had my op at beginning of March, chemo is to lower risk of recurrence. Partner said all over tmrw but I don't count it as being over until the end of the 3 week recovery!! Then it will be over!! 😊 I haven't really had any bad side effects, tolerated it pretty well but I'll still be glad to have it behind me.

Katie, Jay, WolfEE and everyone - thank you for your kind words. I know you're probably sick of everyone saying it'll soon be over, especially those that have suffered with SEs and hospital admissions but I'm now 7 months since diagnosis and only 2 months from end of active treatment so we will all get there! Stay strong everyone. Xx

[Raitchr]

Jay68, I had sentinel node biopsy, they tested the first 4 main nodes during surgery and they were clear. Haven't had reconstruction, didn't want it at the time, just wanted the cancer out.

[Jay68]

Busybees - Good luck for your last chemo - I guess you've already had your op? I've got my final chemo next Thurs (24 Aug) and mx with node clearance booked in for 19 Sept - getting very close - but days are dragging!

[Jay68]

Yes my steriods are same as Mai, Treehouse and Raitchr plus I have 5 days of injections which start 2 days after chemo.   

Raitchr - I note you've already had your mx - mine is on 19 Sept - did you have node clearance too?  Did you or are you having any reconstruction?

[WolfEE]

Busybees - last one tomorrow omg that must be a good feeling just one more lot of side affects and sitting on the ward all wired up you've so nearly done it. I'm excited and happy for you. Roll on the next 3 weeks and hope this last one goes smoothly.
Xxxxxxxxx

[Raitchr]

I don't have any injections by the way.

[Mai7]

My steroids are the same as Treehouse and Raitchr. 16mg per day.

[katie11]

Ooohhh busybees so excited for you. You ring that bloody bell as loud as possible. Can't wait to do the same x

[treehouse]

Steroids: I have four 2mg tablets twice a day ( total 16mg) for 3 days.
And 7 days of injections.

[busybeeS]

Sounds like the steroid quantities are getting very confusing. Best to speak to your oncology team.

I've got my last chemo tomorrow, so fingers crossed it goes ahead. Went to hospital today to get a CT scan and tattoos for radiotherapy. Starts 3 weeks after chemo for 23 sessions.

Feels like we're all getting that little bit closer to the next stage and to the end of active treatment.

Good luck everyone xx

[Raitchr]

Mine is 8mg breakfast and 8mg lunch time so 16mg daily for 3 days.

[WolfEE]

So two x2mg morning and then another two x2mg in the afternoon = 8mg per day sounds right.

Re: early injection mishap.
I have been told just continue have my one today and just finish when the 5 are done. So I guess no harm done. The problem is noticing such things out of hours and getting mixed advice from people who really are not sure gives you mixed worries and fears. Didn't get 2 speak with a doctor today just a nurse who called me back (about 5 hours later than she said she would)

[Raitchr]

I got a few really comfortable bras from Adsa about 8 pounds each. You can step into them and pull them up as they are elasticated, non wired or padded. I had MX so softie fits in the pocket on the bra, pockets on both sides.  I am 34 b/C so I find them comfortable. They come in white, back and neutral, with a variety of styles and straps to choose from.

Just had curry for tea and its lovely to taste something spicy.

Can't wait until next Thursday to get last chemo done, the days dragging on....

H

[MJK]

I found the most comfortable bras post surgery were crop tops which I put on feet first. They're cheap and whatever you wear you won't want to wear later. I have a peachy🍑 fuzz but it currently looks white (previously brown with no grey). I don't have steroids the day before as they put a massive dose through the PICC before starting chemo.
Oncologist appointment tomorrow where we'll discuss the radiotherapy then round 5 Thursday. The finish line still seems such a long way off as I've got 2 rounds of side effects to deal with first.
I've just been picking blackberries and thought of you Mai - keeping triblle out of trouble.
Hugs WolfEE and Treehouse, I hope you're feeling better soon. X

[Mai7]

Treehouse, you are forgiven for being human (and let's not forget, human on chemo). Don't be too hard on yourself. X

I found this company on Amazon which do a nice selection in bras: Intimate Portal. This is the brand I ordered the zip front bra from. Another company called New Chic have some nice feminine bras which have mesh over the cleavage area. The sizing is a bit weird though - you have to order a size bigger than your normal size. I'm not being very practical here though. I think I'm picking bras suitable for 3weeks post surgery. Maybe I'm not facing up to the idea of surgery very well!

WolfEE, I just checked my steroids (as I've put them out ready to take in the morning) they are 4x2mg for each dose so you are taking the same as everyone else.  We count in pills, whereas the pharmacist counts in mg - I'm thinking, it's a good thing we're not pharmacists! 😂

Katie, not only did I google Pepper pig but watched the whole episode and so did my partner! 🐽 I love chips and gravy. Only one thing better than that is chips, mushy peas and gravy! 

[treehouse]

Youngest starts secondary school in September. I have not got anything yet. I had it all ready and labelled in the first week of the holidays last year. He didn't want to go when I was well last week. I dread the shoe shop!!

[katie11]

I get what you mean treehouse. I am such an organiser and like being in control. Its so difficult letting other people be in my role!

Mai your so funny, can't believe you googled peppa pig lol xx

What did they say wolfee were you ok?

As for bras, when I had my surgery I was provided with front fastening non wired bra. I was then told to wear a sports bra. Front fastening obviously makes things easier. Surgeon said sports bras also help to check shape.

Have spent the afternoon school uniform shopping and ironing labels into it! Worst job ever! ! Decided we needed some fresh air so then off to the park and eating chips and gravy (northern thing) being naughty x

[misyangel]

Wolfee I had everyone saying to me at the end of my 4th chemo wow you are half way through and I was like yes and got to go through it all again what I have already been through,  I think we can only relate exactly how we feel through each treatment, our families try and sympathise but they have no idea how one bad day can feel like a whole week and you are right they do all still carry on and have normality we can only dream of our normality days.  You are right as well after this we have the worry of surgury which we push to the back of our minds as we just want to get through chemo.  Vent away that is what we are all here for and we all know exactly how each of us feels as at one point we have all been there.

Treehouse I get emotinal when I have no sleep lol.  I don't think your family will be getting bored of it I think our families feel helpless sometime as really they can't take our pain away.  I watched an interview with Kylie Minouge and she said she normally does everything herself but cancer taught her to let people take care of you and it is so true. When people look after and care for us it really means alot to them as they really feel like they are helping us which they are and we will be forever greatful.  I read that article you were on about and it made really interesting reading.

Jay68, I have had problems with my eyes but mine have been really dry, I now have a bottle of eye drops but in every post chemo.

Mai7 thanks for the wishes.  I had some bras off amazon as my bust was really painful around new lump after last chemo, I am big buster and I got some off amazon and they are so comfy

https://www.amazon.co.uk/gp/product/B01LYL9ZYB/ref=oh_aui_detailpage_o05_s00?ie=UTF8&psc=1

[Raitchr]

Just checked my steroids and they are 4 x 2mg twice each day.

[treehouse]

Thanks jay and wolfee it really helps knowing someone understands. Little things like my skin is so sensitive I don't want to wear a bra but that would embarrass my 14 year old step son.
Also being women I feel this is my home I am in charge( husband too) and right now I don't have a clue what I want or what time I took my paracetamol.
It's a lack of control.

Wake me up when it's Friday 😛