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July 2018 Chemo Starters

Community Champion

Re: July 2018 Chemo Starters

Hi Georgie
The only time ladies seem to struggle with sleep is when you have to take the steroids. For me, I had to take them for 3 days... The day before, on the day, and day after. It really is difficult to sleep then. And I felt sooo hungry! Found myself getting up at midnight, craving sausage sandwiches!
Xx
Member

Re: July 2018 Chemo Starters

Many thanks for the replies; it is so so good to be able to share on here isn't it! 

 

Do many or any of you have sleeping problems during chemo? My treatment is to be FEC T with herceptin and bi-phosphates with, and radiotherapy too after chemo.  No hormone involvement.  I'm having sleepless nights already with the stress, and the oncologist suggested I I obtain some zopiclone from my GP.  Are there any rules about who supplies drugs?  (I mean GP or hospital?)   I'm off to the GP tomorrow morning to ask about a few health niggles I want to check out before I start the chemotherapy, e.g. A rash that is very itchy and close to bleeding, and may be an infection risk.  Just want to go in to all of this with as much of a head start as I can..... 

 

And well done one to those who have braved getting shaved! Let's all hope that we only have to do all of this once in our lives!! 

 

Thanks again GG x 

Community Champion

Re: July 2018 Chemo Starters

Georgie

I did have further tests after surgery......a bone scan and a ct scan. But it was because my lump was quite large, 45 mm. My oncologist said they normally do them if the area is 50mm or more and so , as I was near, she did them anyway, just to be on the safe side. Luckily all clear. 

The chemo will do it's job by killing off any stray cancer cells. The radiotherapy will target the specific area and again will kill off any stray cells. You are having all the right treatment and the oncologist will do all the right  things for you. 

I hope this reassures you. 

sue xx

ktk
Member

Re: July 2018 Chemo Starters

Hi Karen. Well done for braving the shave. I found it very liberating and it really was a family affair with husband son and daughter all having a go! If you would like to pop over to the June thread you will see some of us who have posted pics to encourage others. Don’t forget the sunscreen!! Kxx
Member

Re: July 2018 Chemo Starters

Hello all,

Hope all is going well for those having chemo this week.

Welcome Georgie, I understand your frustration at wanting to get things going with your treatment. The waiting is very hard and I too convinced myself other things were going on and the stress of this causes more anxiety. I asked for a head scan and they agreed without quibble and it all came back ok, headaches and neck ache then went away 😬. Hopefully you will get a start date soon, mine was a wait from 2nd May to 29th June which seemed an age. Chemo before op for me with one under my belt now and pleased it’s started..
I have felt well this week but had to brave the shave as handfuls of hair was falling out last night. We both had a glass of wine and my husband very gently shaved it off. I did have tears and have to admit it was hard to look in the mirror at first. Today I donned my wig and went to B&Q it was fine just a bit hot, plus I kept thinking it was wonky 😂.
Booking a cruise for the week after the next session to celebrate my birthday, making the most of it whilst I am off work and thinking why the hell not try and enjoy the good weeks.
Hope you are all having a lovely weekend.

Best wishes

Karen x
Member

Re: July 2018 Chemo Starters

Thank you ktk 

ktk
Member

Re: July 2018 Chemo Starters

Hi Georgie. I would ask your BCN for advice tomorrow but I doubt that further scans will change your treatment. If you are having chemo before surgery they will be aiming to shrink what is there and it will also get any new nasties. I think they will scan you after chemo to check that what was there has shrunk and will find anything else if it is there. I know it is hard, but try to keep positive and have faith that they know what they are doing!!😁 xx
Member

Re: July 2018 Chemo Starters

Thank you ktk too; I really appreciate your reply.

Can I ask another question here please?  When I saw the oncologist, I asked about having a further scan, as surgery showed a grade 3, HER2+ve, hormones -ve 29mm tumour and 2 lymph nodes involved plus some micro metastasis.  The biopsy was taken in late May, so I asked about another scan as it is now at least 6 weeks ago.  Have had a few pain and breathlessness episodes so am a bit concerned about possible further spread.  The oncologist started to shake her head before the end of my question, and said they would not be doing any more scanning.... and yet I hear on forums that others have had these.  The tumour grew 4mm in about 2 weeks so of course I am wanting to rule out anything else before chemo.  I am going to speak to breast care nurses too on Monday and also seeing my GP about the extra symptoms... 

ktk
Member

Re: July 2018 Chemo Starters

Hi Georgie. I have lost 3kg since starting chemo, based on the hospital records before each session. I find I don’t have much of an appetite in the first few days, then it gradually comes back. A bit like being on the 3:2 diet for that week. Also, I have lost my appetite for sweet stuff and am drinking less alcohol. My chemo nurse said he expected me to lose weight. I haven’t found the steroids increase my appetite because they are taken when you are feeling nauseous so don’t want to eat.

My chemo started 6 weeks after surgery. Kx
Member

Re: July 2018 Chemo Starters

Thank you Sue C,

That has already reassured me....... I feel like I am on the starting line for a long and gruelling race, but things just keep stalling the start.  I do want to lose some weight (not loads, just a bit....) get ready and prepare as best I can, so yes, I will take your advice about meals and head coverings.  I'm especially concerned about having steroids, as I know they can pile weight on and as I already struggle with weight, it's seems just another thing to add to the cancer.  I do read the forum with interest, as people here know the ropes.  I'm finding that people I know are all over their own 'shock' at my diagnosis, and they so often ask 'when do you start the chemo?' but then they seem to lose interest when I say I don't know yet!! Thanks for reading xx

Community Champion

Re: July 2018 Chemo Starters

Hi Georgie

And welcome to the forum thread.

My chemo started 6 weeks after surgery , which I think is about average. I was told it needs to start within 12 weeks. I managed to speed things up slightly by signing the consent form on the day of the oncologist appointment. She did say go away and think about it, but for me, there was nothing to think about. I just wanted to get on with it. 

Use the time to prepare and relax. The first week of chemo is the toughest and you may not want to do too much. So you could prepare some meals and pop them in the freezer. Also have a think about what you are going to do about your hair. If it's long, I would suggest getting it cut short. If you would like to get a wig, then also do this in advance, as it can take a little while to come through.

Best wishes

Sue xx

Member

Re: July 2018 Chemo Starters

Well I thought I would be joining this July community, but after seeing my oncologist on Wednesday, for what I thought would be my appointment to start me off next week, I was told that I need to wait another couple of weeks to go back and sign for consent. Then chemo may start 'in another couple of weeks'.  

I just want to get on with all of the treatment, and I know it's not going to be a walk in the park..... has anyone else had these delays? Sorry to be moany!  I'm just getting tearful and so frustrated. 

Shi Community Champion
Community Champion

Re: July 2018 Chemo Starters

Iammstillme👏👏👏well done, 1st one ✅ drink plenty of water and take meds as prescribed, if antisickness doesn’t work, ring your rapid response number, they’d rather get you on meds that will prevent any sickness if they are not working. Pace yourself and even if you’ve no temper erasure but not feeling right ring the number. Days 7-14 are your nadir days when neutrophils are at their lowest and you will need to be really careful and usually week 3 is everyone 💃🏻💃🏻🕺🕺💃🏻💃🏻Week, before you bounce off the walls with steroids again. For the jabs, grab a bit of belly fat, wipe with antiseptic swab wipe if you want and plunge needle in, press down till you hear the click, this will bring needle back up on itself and voila, all done, takes less than 5 seconds, do alternative sides of belly button, once you get 1st one done it’s ok, promise, I was 😳😲😳😲about needles too when I started chemo, but promise it’s really ok and doesn’t hurt ❤️❤️❤️💕💕✨✨✨shi xx
Member

Re: July 2018 Chemo Starters

1st of 3 EC went well today. They have given me 3 types of anti-sickness tablets & a pack of steroids to take over the next few days. Also I have the G-CSF injections to do for 5 days starting on Tuesday - terrifying thought for a major needle-phobe (okay, so that's not a real word) like me but I will try to do them myself and ask my GP if they will do it as a backup.
I slightly wavy kind of head straight after the chemo (normal on C the nurses said) and on my way back to work I was sweating like there's no tomorrow! Probably a mixture of the heat & beginning of menopause but I'm going to monitor my temperature just in case. Also I'm very windy for the first time ever! Anyone else had that?
I feel a little weary now but that's probably because I went straight to work afterwards and, although I tried to take it easy, I may have fallen into my old ways and worked at normal pace. This is going to take some time to change but hopefully I'll do it before my body has to make me. A lazy(ish) weekend is on the cards I think.
Take it easy my fellow chemoers xx
Member

Re: July 2018 Chemo Starters

Hello all,

 

I'm trying to straddle the June and July starters threads, as I had first cycle of FEC (after that TJP) on the afternoon of 29 June. Just realized that I hadn't updated here, for those who aren't reading the June thread.

 

Last week I noted that I'd been pretty SE-free. But then, last Saturday, my Day 9, my temp started to climb -- first 37.5, then 37.7 (my usual temp is around 36.2-36.4)... so I called the chemo hotline. Only other symptom was dull lower back pain, sort of like I'd get with PMS. So the onco on call had me monitor with a plan to call back if it went up. It was the hottest day of the summer thus far, and there was a chance I was just overheating, though I was taking it very, very easy and drinking about 3 litres of water a day. But my temp kept rising.

 

When I got a reading of 38.2 under the tongue while on the phone with the onco, she had me go to A&E. Bloods came back and I was neutropenic; they admitted me to hospital for 48 hours of IV antibiotics, more filgrastim injections (I did them myself at home Days 1-5), and close monitoring while in an isolation room. Thankfully, the temp didn't spike again, and I was discharged with 5 days of antibiotic tablets. 

 

All this to say: Please do watch your temps, especially as you start to approach your white blood cell trough in Days 10-14. Febrile neutropenia is serious. Stay safe! 

 

xo,

r.

Member

Re: July 2018 Chemo Starters

Hi CDC1811, Thanks for you message on here had my Treatment on the mobile bus yesterday meet lovely people.  Came home and slept for a few hour''s.

 

Take care, have a lovely weekend.

Highlighted
Member

Re: July 2018 Chemo Starters

Hi Warcol, have a lovely weekend.  My first time on the bus for chemo just love meeting new people.

 

All the best for Monday.

Member

Re: July 2018 Chemo Starters

Have a great weekend Warcol and good luck for Monday.
Sam xx
Member

Re: July 2018 Chemo Starters

Thank you cdc1811. Yes of course you can Smiley Happy that sounds great I will definitely take a look.
Sam xx
Member

Re: July 2018 Chemo Starters

Had pic line fitted today all ready for chemo on Monday! One last weekend to enjoy before the chemo bus hits me x have a lovely weekend everyone xx