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July 2019 chemo starting

AWW
Member

Re: July 2019 chemo starting

Hi everyone,

 

Glad to know we are all making progress and coping well with Chemo. 

So far so good for me too, I have had no sleep or fatigue issues, taste bud fine, just headache once in a while but I do suffer from migraine so am not surprised.

Last night I started feeling shoulder and back pains up till now, (I don't know if it is chemo related) so I am taking paracetamol to help with that.

 

Other than that everything else is good. 

 

Shi Community Champion
Community Champion

Re: July 2019 chemo starting

Sorry Kilmarn got changed to Kilmarnock 🤔pesky auto text gremlins xx

Shi Community Champion
Community Champion

Re: July 2019 chemo starting

Well done Kilmarnock 👍flower hows your heart rate? Might be idea to use the nurse facility on here. Great news no brca gene, we’re you triple negative bc? If so Patricia prijatel’s book surviving triple negative bc is very good and I found it helpful. Also tn survivors Shannon Doherty and robin Roberts in USA have inspired me ❤️Lucylump you are doing great, you all are 👍👍💕💕✨✨Shi xx

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Re: July 2019 chemo starting

Kaytee, Aww and Crochet-Helly hope you are all managing Ok too. Xx

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Re: July 2019 chemo starting

Yay well done Kilmaron for getting started as well. That is great news. Flower fantastic news too about your tests. Hope you can sleep better soon. So pleased your temperature is staying ok as well and LMC you will be started soon too. I am afraid I don't know about Picc lines either. Hope you all have a good day. Xx

Member

Re: July 2019 chemo starting

Hi LucyLump,

 

Getting out and about, that's fantastic! Heart

I am happy to hear that your sleeping pattern returned to normal, it gives me hope that I will be fine sleep wise in a couple of days. HeartSmiley Happy

Member

Re: July 2019 chemo starting

Hi LMC88,

 

So good to hear from you and I am glad that all goes smoothly with your recovery. Smiley Happy

I do not know much about PICC, I got a port, sorry. I heard that inserting a PICC does not require surgery but I could be wrong?

Take care Heart

xx

Member

Re: July 2019 chemo starting

Hi everyone,

i had my first chemo TC yesterday. Took over two hours to get cannula in as veins were not performing. I am trying the cool cap and it was really not so bad.it did add 90 minutes onto session at end though. Feeling fine this morning so far, lots of drugs and injections to look forward to now.hopefully they will keep nausea and infection at bay. Glad to be reading everyone else is doing ok or getting over their problems.

hope the weekend is king to us xx

Member

Re: July 2019 chemo starting

Dear Shi and LucyLump, I will definitely do, thank you for reassuring me that it is the right thing to do. No paracetamol since yesterday  evening, my temperature is normal and this morning (apart  from the usual 2-5pm insomnia) I feel much better. I have to catch up on sleep for sure  so I will nap whenever I can. One thing, maybe it is odd that I mention it, but my heart rate is low. I genetically have a low blood pressure  and my heart rate was always low due to exercising 5x/week. I haven't  seen the gym since end of May and now my resting  heart rate in the morning and at bed time  is lower than ever, around 58. Otherwise  I feel fine. Should I worry about this?

I forgot to mention  that my genetic test for BRCA1 and BRCA2 came back  negative. Smiley Happy

 

How is everyone feeling this morning?

Xx

Member

Re: July 2019 chemo starting

Hi all 

hopefully things are getting back on track and starting chemo in the next 2 weeks. 

Quick question, has anyone had a PICC line fitted? 

Flower hope you are feeling better soon ❤️

Xx

Shi Community Champion
Community Champion

Re: July 2019 chemo starting

Flower ❤️Please watch your temp like a hawk and even with no temp if you don’t feel right get to a&E over the weekend show them your rapid response card and tell them you are on chemo ❤️You can’t be of a mindset oh’ll i’ll Have a paracetamol and see in an hour or so, not during chemo and your units would rather you ring them to double check things because it helps them keep you safe during chemo ❤️💕💕✨✨Shi xx

Member

Re: July 2019 chemo starting

Oh my goodness Flower you are having to cope with so many things. I really hope that throat infection doesn't get worse. Being on a drip for a few days does not sound good. I am still doing well. Managed to take the dog to the vet this morning (she is fine too) and also do a bit of shopping. Sleep wise mine has returned to normal for me too. Hope you can sleep better tonight. Hi everyone else. Thinking of you all. Xx

Member

Re: July 2019 chemo starting

Hi Shi and LucyLump,

 

I called them up yesterday and I had an appointment today. My chemo doctor gave medication for the flush/rash, as my neck and chest were still quite bad. Probably the numbing pain has nothing to do with any infections, it is probably a side effect of Taxotere that should be better by Wednesday. She made an appointment for me with the ENT doc. He said that my ears are clear, but I have a throat infection. He said it is a mild one and he can not give anything for it now, it should be sorted by itself by mid next week. If not and I will get feverish, I need to be on antibiotic drips for a couple of days. Fingers crossed that this is not going to happen. 

My bad luck that one of my fillings fell out yesterday while I was flossing so I had to see my dentist today. (I went to see him a week before chemo for a chek u and everything was good.) Luckily she is close by to the hospital and she was free to fix it. Smiley Happy Altogether it was a better day than yesterday, I spent 5 hours out of the house by myself going to the hospital and to the dentist, and I managed to have a nice lunch as well. I was wrecked when I got home and needed a long nap. Yesterday night I was up from 3am-5am for no reason, ugh... Anyone experiencing partial insomnia or is it just my broken sleeping pattern? 

 

Shi, you are so right, there is no such thing as 'trivial infection' during chemo, thank you for your advice.

 

LucyLump, how are you doing today? 

xx

 

Shi Community Champion
Community Champion

Re: July 2019 chemo starting

Flower have you rung your rapid response number? Best to check with them if not, any kind of infection ‘ no matter how trivial’ you might think it is cannot be treated as ‘triviak’ During chemo, please keep safe ❤️💕💕✨✨Shi xx

Member

Re: July 2019 chemo starting

Oh Flower an ear infection is really bad luck. Hope your gp can sort that for you asap. Don't wait till tomorrow to see them if you don't have to. LMC we will all have our fingers crossed for you starting next week. One weird thing.... have developed an absolute aversion to the smell of soap. Spent part of this morning searching Tesco.com for unscented ones! Also noticed that lack of appetite earlier in the week has resulted in 6lbs weight loss. Could be a bonus but I suspect I will make up for it soon! Xx

Member

Re: July 2019 chemo starting

Hi Everyone,

 

So, I think I developed an ear infection. I have a numbing jaw and headache all day but it started with my ear yesterday so I really think it is coming from there. I have stuffed ear, a little but consistent pain like when you are having an ear infection. My rash is coming and going, and I had a bit temperature today although it stayed under 37.5 so I wasn't that worried. I am going to see my doc tomorrow to get it sorted. Couldn't really nap today due to my ears, but I have managed an hour nap in the afternoon. LucyLump, I am so happy it is over for you for this cycle, well done! Smiley Happy

AWW, I hope you are doing ok.

Keep up, everyone, we are always getting one step closer. Smiley Happy

xx

 

Member

Re: July 2019 chemo starting

Hi LMC,

 

So glad that it got sorted and you are recovering well.

xx

Member

Re: July 2019 chemo starting

Glad you are feeling better Lucy Lump and good luck and fingers crossed for everyone going through all this at the moment. 

I should have been starting chemo today but due to the infection I’m not 🙄 going for my stitches out tmoro so hopefully my surgeon happy with everything. I have my appointment with oncology next Wednesday so 🤞🏼🤞🏼🤞🏼

Member

Re: July 2019 chemo starting

Morning everyone.Hope you all managed to sleep OK. Am celebrating having my first cup of coffee in a week. I know coffee is not the best but it is making me happy. Earlier in the week I was thinking I couldn't imagine going through this 5 more times but am now thinking bring it on, get this done so all good. I didn't see much improvement over days 1-6 but yesterday I felt so much better. Definitely sleeping is a good plan too. It helps make the worst time go quicker. Thinking of you all. LMC hope that infection is getting sorted for you so you can get started too. Xx

Member

Re: July 2019 chemo starting

Hi LucyLump,

 

I am so happy to hear that you are feeling better. The night was completely fine but today I'm definitely not feeling so well. Funny mild numbing pressure in the head/jaws, mild stomach pain on and off, dizziness, rash coming and going although they are not itchy at all they are just hot. I got the one-off injection,  I think this is the one you will get maybe next time. No bone/muscle pain yet. Smiley Happy I know everyone is different but I feel I am on the same path as you regarding the side effects, so I assume I will spend lots of time in bed in the next 3-4 days?

Well done, you!!! We can definitely do this!

xx

Member

Re: July 2019 chemo starting

Well done Flower79! I wimped out and am currently waiting for community nurse to come and do injection number 6 for me. Really looking forward to having 2 weeks off them. There must be different while blood cell boosters. Mine is filmagrastin and definitely have had no bone pain at all with it. Hope you don't get bone pain either. Presumably though if you do they can switch to a different med for next time. I am apparently getting a one off injection next time instead of 7. Does the same job (I checked) but not given automatically as it costs more. Definitely feeling less tired today - yay! We can do this! Xx

Member

Re: July 2019 chemo starting

Hi LucyLump and all fellow fighters,

 

Today was not too shabby. I had some mild nausea on and off from the afternoon, and I developed a skin reaction like flush and some rash on my chest, face and upper arm but it went away by the evening so nothing serious. I drunk lots of water and eat as usual, however, my nausea is worst after a meal. I had two really long naps, and it helped me to stay active during the rest of the day. My taste buds seemed ok today, they didn't get worst, but my mouth is getting really dry so I rinse as often as I can. I administered Neulasta this evening, I hope I will be lucky, and the bone/muscle pain won't be too bad.

 

How is everyone else doing?

xx

Member

Re: July 2019 chemo starting

Morning. Hope you are all coping ok today.


@LucyLump wrote:

Well done Flower and everyone else. I have not had any bone pain at all or loss of taste buds. Sickness and nausea first night then complete exhaustion. Not much appetite but eating little bits here and there. I don’t think the filmagrastin injections have helped so looking forward to last one on Thursday. Think they can make you tired too. Xx



Xx

Member

Re: July 2019 chemo starting

Well done Flower and everyone else. I have not had any bone pain at all or loss of taste buds. Sickness and nausea first night then complete exhaustion. Not much appetite but eating little bits here and there. I don’t think the filmagrastin injections have helped so looking forward to last one on Thursday. Think they can make you tired too. Xx

Member

Re: July 2019 chemo starting

Hi All,

 

Everything went smoothly today with my first chemo session. It was a long day and apart from feeling pretty tired, it's all good so far. For dinner, I had my fav Japanese ramen and the soup tasted bitter. I never thought that taste buds will start to play their game so soon. Other foods still taste kinda ok but I assume they will start to taste bad very soon. 

LucyLump, I can totally feel the all day/night sleep will get me as well. Do you have any bone/muscle pain? How is your nausea?

I am rooting for all of us. It's a good feeling that the first one is done. One step closer, yay!!!

xx

Member

Re: July 2019 chemo starting

Kaytee, it was my hospital that issued the wig voucher, not Macmillan, so definitely worth asking about when you're there next x

Community Champion

Re: July 2019 chemo starting

Kaytee...

 

My Oncologist gave me a voucher... from my hospital I was allowed up to £200 but you can add to that if you wanted! 

Different hospitals allow different amounts towards the wig.. I know some are a lot less than £200 -it came with a list of local suppliers who accept the NHS voucher 

It would be worth asking about it x 👩🏼

 

Member

Re: July 2019 chemo starting

Hi Kaytee, the voucher I got would cover the cost. There were a few more expensive ones made from real hair but plenty of choice of others. I got my voucher from my breast cancer nurse. Xx

Member

Re: July 2019 chemo starting

Hi annabel

When u say voucher is that money of or does it cover the full cost?

 

I don't think we have a Macmillan office at my hospital but I will email them and ask . Thanks for the suggestions xx

Member

Re: July 2019 chemo starting

Thanks everyone for your best wishes. Its lovely to have the extra support. 

Hi Susan thanks for letting me know how well you got on with the cold cap, pleased it went so well for you. I suffer from headaches and migraines so when they said there is possibility of increased risk I thought no thanks! I also have an hour commute to the cancer centre and and hour back so am considering using the mobile unit which is in walking distance (pre cancer walking distance anyway!!) And it's not an option on the lorry anyway.

Good luck all xx

Member

Re: July 2019 chemo starting


@Kaytee wrote:

Hi ladies

I should be having first chemo this afternoon. Waiting for blood test results as I have a cold but was advised yesterday that if it's just a cold will continue with the chemo.

I hope it goes ahead so I can start to move on but slightly nervous of the unknown now.

I have decided not to cold cap as increased risk of headaches  is something I would rather avoid 

Had meeting at the hospital wig lady yesterday was very surprised at the price for a basic one £75 plus!!  

Anyway best wishes everyone xx


Hi I am almost at the end of chemo and I just wanted to say it might be worth reconsidering cold cap . I have retained about 90 per cent of my hair and have met other women on ward exactly same . It is clear most ladies do not  go for this and I wonder why ... never once had a headache just 10 mins of discomfort which two paracetamol  make minimal . Yes you are on ward twice as long but for me the fact I kept my hair made it all worth it . 

Community Champion

Re: July 2019 chemo starting

Hi Ladies... 

I'm from the Oct 18 starters! (That seems like a long time ago!!!)

 

Kaytee...

Did you not get a voucher for your wig from your oncologist?

When I started my treatment I was given a voucher and a list of the salon's that accept them! 

I know different trusts offer different amounts but it would be worth asking about the voucher! 👩🏼

 

Best wishes to you all with your treatment and recovery...

stay strong Ladies! 💪🏻💗🌸👙 xx

Member

Re: July 2019 chemo starting

Hi everyone, hope you are Ok and hope you get started today Kaytee too. I have been sleeping pretty much all day and night for the past 4 days. Hopefully better soon. Each day though is one step closer to the end of our treatment and are cells are being zapped in the process. I am sorry you don't all get wigs. I am in Scotland and got a prescription to go and get one fitted and ordered from a hairdresser in town. I have decided though to just go for a scarf anyway. Look after yourselves. Thank you those who have been through this already for popping in to see us. It is really appreciated. Xx

Member

Re: July 2019 chemo starting

Good luck Kaytee, thinking of you. I am waiting for a heart scan at moment as my ECG before op showed up something .😩 never away from the hospital these days.

let us know how you get on today

Shi Community Champion
Community Champion

Re: July 2019 chemo starting

Hi kaytee, your Macmillan center at your unit usually have pre loved wigs that you can have and you make a donation for it. ❤️For this afternoon and keep the fluids flowing when you get home ❤️💕💕✨✨Shi xx

Member

Re: July 2019 chemo starting

Hi ladies

I should be having first chemo this afternoon. Waiting for blood test results as I have a cold but was advised yesterday that if it's just a cold will continue with the chemo.

I hope it goes ahead so I can start to move on but slightly nervous of the unknown now.

I have decided not to cold cap as increased risk of headaches  is something I would rather avoid 

Had meeting at the hospital wig lady yesterday was very surprised at the price for a basic one £75 plus!!  

Anyway best wishes everyone xx

AWW
Member

Re: July 2019 chemo starting

Hi Flower79 

 

So far so good, not feeling any different yet except for the last part of chemo when I started feeling strange in my head and sudden running nose but after 30mins or so it disappeared, so I was kept in for another 30mins for observation after which I was discharged. 

Came back home, ate, slept and so far feeling alright. 

I pray it continues to go well. 

I will be thinking of you tomorrow, hope all goes well for you too. 

 

Cheers xxx

 

NB: I didn't use the cold cap. 

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Re: July 2019 chemo starting

Thank you, everyone is so friendly on this chat thingy

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Re: July 2019 chemo starting

Thank you so much Flower79. Well done everyone. We will get there. Xx

Member

Re: July 2019 chemo starting

Hi Kilmaron,

 

Yes, well said! We will get through this together! After Friday you can tick off one, yay! Good luck, I hope everything goes smoothly for you.

xx



 

Member

Re: July 2019 chemo starting

Hi LucyLump,

 

I am glad to hear that you are feeling better. I am sure that the worst part is over now for the next 3 weeks, and you will feel much better day by day. 

xx

Member

Re: July 2019 chemo starting

Hi AWW,

 

I was thinking of you today, I hope everything went smoothly and you are at home resting. I had my info session with the nurse and the nutritionist, and by the time I could have started my first chemo session, there was not enough time left. I will have it tomorrow morning. 

Well done you, one less to go!!! I hope you can have a good sleep.

xx

Member

Re: July 2019 chemo starting

Thank you for the cold cap advise. I will try to keep at it. Nurses have said to get through first 15 minutes then i will be numbed and not feel it so much. I have heat pads and plenty fleeces looked out

AWW
Member

Re: July 2019 chemo starting

Thank you Flower79.

I am at the hospital now, due to start 11am.

Best of luck to you too. 

 

Member

Re: July 2019 chemo starting

Glad you're feeling a bit better this morning Lucy x

Member

Re: July 2019 chemo starting

Hi everyone, lots of good luck for those of you starting this week and thank you Daisydi for popping in to see us. I have slept most of the past 2 days but feel slightly better this morning. Trying to continue drinking as much as I can. Xx

Member

Re: July 2019 chemo starting

Hi just popped over from the Feb thread.  I had my last chemo 4 weeks ago.  I had 3xFEC and 3xT.  Just to let you know that I cold capped all the way through and still have a full head of hair.  I have shed a bit but you would never know.  I have no bald patches.  Just make sure the cap is really tight and pulled right down onto your head.  Lots of people seem to get bald patches on the top of their head but this is purely because the cap is not pulled down or tight enough.  It is uncomfortable but worth it if like me you are terrified of losing your hair.  My hair was always soaking wet with loads of conditioner on it.  I used the smallest cap and I wouldn't say I had a small head but by doing that it was really tight.  Please pop over to the Feb thread if you have any questions.  Good luck x

Member

Re: July 2019 chemo starting

Hi everyone,

I am starting my chemo this Friday,12th. There is so much to take in and remember, my head is so full of information and I think I am only remembering about a quarter of what Oncologist told me. I am going to try the Cold Cap. I am Triple Negative so chemo and radiotherapy for me. I wish all those starting before me this week much much luck and we will all get through this xx

Member

Re: July 2019 chemo starting

Hi LucyLump,

 

Than you so much for your encouraging words! How have you been doing so far? I am starting my journey tomorrow, wish me luck! AWW, good luck to you for tomorrow!!! We can do this.

xx

Member

Re: July 2019 chemo starting

Oh no LMC so sorry you are in hospital. Hope that infection gets sorted soon for you. What an awful time you are having. Thank you Shi will definitely look up the Unicorn! Xx