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May 2020 Chemo Starters

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Re: May 2020 Chemo Starters

hi, just an update - they weren’t concerned by the readings at all. I asked to see last months as a comparison.. only a tiny drop this cycle but they were happy to go ahead with treatment. No4 done, 4 to go.. 

thanks for all your advice.

xx

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Re: May 2020 Chemo Starters

Hi there 

I had low neutrophils last time, when I had bloods taken on Monday. They retook the bloods the following day, and they'd recovered enough for chemo to go ahead on the Wednesday. I think they go more by the neutrophils than the whole of the WBC.

Try not to stress (easier said than done, I know!)

Give your unit a call and see what they're saying about it. 

 

Much love 

Fiona x

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Re: May 2020 Chemo Starters

Hi

 

My white blood cell count is 3.0. I was due to have my chemo today . They didn’t think it was an issue however I have had it put back to next Friday . I haven’t been well. Fatigue and not recovered enough so we agreed to give it an extra week. It’s my last one of 4. Oncologist says it won’t affect the treatment in anyway . 

Take Care 

Tricia X

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Re: May 2020 Chemo Starters

Morning all!

i had a late night call from my dr yesterday - my bloods were sent to them instead of the chemo unit! She said my white blood cells were 3.3 (should be 4 min) so on the low side.. do you think they would cancel my chemo planned for delay? She said they may still go ahead as my neutrophil is normal! I did have a throat infection this round and was on antibiotics.. feeling very stressed this morning 😔 has anyone had low white cells recently? Xx

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Re: May 2020 Chemo Starters

Hi Sarah,

I'm from the Oct '17 chemo group, where the lovely Shi is from too 🙂 Unfortunately my bc returned at the end of last year and I have now got SBC in my sternum and a few spots in my lungs. I've been having weekly Paclitaxel since the middle of May and coping ok on it-I have 3 weeks on, 1 off etc. The side effects are much easier than the three weekly Docetaxel, which I had in 2018. The main side effect I'm having is that I'm tired and feel a bit week for a few days, but I'm nearly 61, so that might be a factor! On a positive note I could see a difference in my breast lump after only two sessions of Paclitaxel, so even before I'd completed a full cycle! Originally my onc had only put me down to have 3 cycles, but because so far I'm doing so well on it, she's suggested I have another 3 until the middle of October. The pain from my lump has reduced a lot too and I'm not needing to take painkillers on a regular basis now.

The worst part of it really is having to attend the hospital on a regular basis, I have to go twice a week because of having a blood test a day or two prior to having Paclitaxel.  It also takes a little longer than I'd thought because you have pre-meds before the chemo and then you have to wait 30 mins afterwards before the chemo can start. One of the pre-meds is an IV antihistamine, which I found really knocked me out and made me sleep for ages when I got home! A few weeks ago I enquired about the dosage and was told I was receiving a full one, so I asked if I was only having a third of the chemo dose at a time, why did I need this and so my onc was emailed and I was told it could be halved! I've since stopped having it all together as I didn't have any reaction to the half dose (my onc said it's on Royal Marsden guidelines) so if you find it affects you, it might be worth asking about it. Hope it goes well for you,

Jencat x

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Re: May 2020 Chemo Starters

Hi Sarah

I've only had one docetaxel so far (tbh one was quite enough!) I have my review on Tuesday, and I'm wondering if my oncologist might suggest that given my reaction. But I don't have any direct experience of that. My understanding from other experiences that I've read is that because it is weekly, the dosage (per week) is lower and therefore fewer and milder side effects? But other than that, I don't have a clue 😕

Can you phone and ask to speak to your oncologist and/or BCN to get some answers? What are your specific concerns?

 

Sorry I can't be more useful....I can't remember if anyone here is on the weekly regime...if no joy, perhaps try one of the more generic chemo threads? I hope you get some answers and feel more settled. I can only imagine how unsettling it must be to have mid way scans, followed by treatment tweaks - it must give rise to a lot of questions!

Sending hugs

Fiona xx

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Re: May 2020 Chemo Starters

Evening ladies

hope everyone is coping well x 

Mid-chemo Mri results back. Right lump has shrunk (21 to 13mm), left lump negligible (17x8 to 17x6) and it’s still difficult to see properly. Onco unhappy with my liver enzymes during the three TCHP so far so she is swapping me from Docetaxel to weekly Paclitaxel. Has anyone Had a similar experience please ?

 

Sarah x 

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Re: May 2020 Chemo Starters

Evening ladies

hope everyone is coping well x 

Mid-chemo Mri results back. Right lump has shrunk (21 to 13mm), left lump negligible (17x8 to 17x6) and it’s still difficult to see properly. Onco unhappy with my liver enzymes during the three TCHP so far so she is swapping me from Docetaxel to weekly Paclitaxel. Has anyone Had a similar experience please ?

 

Sarah x 

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Re: May 2020 Chemo Starters

I take loratadine (Clarityn has this in it I believe) 30 mins before the filigrastim and then for about three days afterwards. It’s just a hayfever tablet. Needs to contain loratadine though. Filigrastim is the devil’s work and is seen as such by so many women who have to use it on the fb groups I’m in. I’ve no idea why your BC team think it’s in your head when there’s so many women say it’s a bugger.

 

sarah x 

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Re: May 2020 Chemo Starters

Evening ladies.

Please don’t take this the wrong way, but it’s reassuring for me that others are struggling with these injections!! I was led to believe by the nurses that I was the only one and it was in my head!! I’ve found the chemo ok compared to these!! I’ve cried each time I’ve had to take them as the side effects are awful!! I’ve just had cycle 4 of 6 and they have increased the amount of days from 5 to 7!! My side effects aren’t so much the aches and pains but the horrendous hot flushes and night sweats every 45 mins!! No sleep at all!

I keep telling myself 10 days of hell is worth it but lack of sleep doesn’t make it easy. I will definitely get stronger painkillers but someone suggested using clarityn as this helps too? Has anyone heard of this??

Can I also say thank you for all that comment on the page. I’ve not been up to social media etc myself but I do appreciate anything you all write on your journey xx

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Re: May 2020 Chemo Starters

Aw that sounds terrible, I really feel for you. I have filigrastim too (and Docetaxel!) but my pain hasn’t been to your levels. I only have one injection each cycle - can you ask about that one ? Don’t get me wrong, it’s still absolutely horrid and I just cry for a few days and say I can’t do it but it passes eventually and I get by on paracetemol and ibuprofen.

I hope your team listen xx

 

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Re: May 2020 Chemo Starters

The pain just got unbearable. Could not eat, drink or talk! Tongue was on fire, couldn't swallow and every bone in my body (including little ones in your ear??) ached and hurt and stabbed and burned like a son of a female dog! I was in tears begging them to stop the filgrastim. 

The nurses were (for the first time) really slow in picking up how much pain I was in. They kept saying "if you're still sore tomorrow...." I was in fecking agony!

GP thank god prescribed co codamol 30/50 which began to help, and then I also got naproxen to take in between.

Never experienced anything like it. I actually wanted to die the pain was so bad. Going to have serious words with my "team" at next review. If I take the strong painkillers early it should help but I'm not taking 7 filgrastim.  I'll do 5 at a push, but they can whistle for the rest!

 

Thank god I'm picking up now but it was 8 days of sheer hell. 

I've heard some ladies are OK on it and I SINCERELY wish that for everyone who is due to have it. I'm glad I only have two more or they could go whistle for all of it! If a treatment that is supposed to save your life makes you want to die.....we've got the balance wrong surely??

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Re: May 2020 Chemo Starters

Ahh Sarah that sounds **bleep**! Do you worry at all about the dose reduction?

I had a mastectomy first so no scans now, oncologist says they just ‘assume’ it’s gone once it’s been cut out and had chemo! 
Oh lord fiona, what happened?! We’re all responding differently so share if you think it will help xx

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Re: May 2020 Chemo Starters

I am feeling better. Didn't want to put too much on here in case folk got frightened but it got SO much worse! Saturday was a walk in the park compared to what came later! However, I am beginning to feel better.

I wonder when my eyebrows will give up the ghost!!

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Re: May 2020 Chemo Starters

Hi Ladies,

Great to see you all pop in for a chat and update.

 

I just want to add that I was hospitalised with anxiety during first cycle of Chemo. They did every test going and it came down to anxiety . I was prescribed Lorazepam. Up to two a day . I’ve had it before for panic attacks . 

I only take it when needed and have only taken it just before chemo and just after . The best thing about it is it’s anti sickness properties. It’s a win win with them if you start to feel physical symptoms of anxiety . 

I can’t take anything stronger than paracetamol so they help me keep calm. 
Just knowing I have them to turn to helps. 

Good luck everyone and as Fiona says look after your soft tissue . 

Big Hugs 🤗 

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Re: May 2020 Chemo Starters

Same88

my TCHP was dropped to 80% at my third cycle because my liver enzymes were too high after cycles 1 and 2 and I had awful diarrhoea. 
I have an MRI on Monday to see how the chemo is doing and results on Thursday. My chemo #4 will be Friday instead of Tuesday to allow for MRI results to come through. Anyone else had/having a mid-chemo MRI check too?

 

sarah x

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Re: May 2020 Chemo Starters

Thanks RubyRose and Fiona,

Great to know. And love your “look after” body parts Fiona. 

May I recommend Kefir yoghurt for the gut. (I am developing superstitious tendencies during this treatment and I could swear I’m best on days when I have that with my breakfast!)

Must remember to sink 3-4 pints of water in the morning. It’s taking the edge off the headaches and I feel more myself. 

Hang in there folks. Keep counting the days!

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Re: May 2020 Chemo Starters

Twitchy eye here too! My magnesium keeps dropping quite low which can cause muscle spasms and general tiredness, so maybe make sure they’re keeping an eye on that. But likely part and parcel of side effects!

Scalp cooling seems to be working for me too, desperately unpleasant. Eyebrows also on their way out!

Had to have my chemo dropped to 80% On cycle 4 today cos my platelets and HB are taking a hammering, which I’m a bit worried about. They say same efficacy, but it is slightly unsettling me! 

Fiona, I hope you’re feeling better! Sounds like you were having a bit of a rough patch last week xx

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Re: May 2020 Chemo Starters

Thanks Fidget

Lovely to hear from you and thanks so much from the advice. Good (for me!) that you are just ahead of me with the treatment.  I had a conversation with my GP yesterday. and she's prescribed some codeine for me to keep in reserve in case I need something stronger than paracetemol. My days 4/5 will be Monday/Tuesday so fingers crossed that I don't need any help over the weekend. I think I've found the anxiety to be worst in those out of hours times, when the place I'd be sent (A&E) if there was a problem feels to me like the riskiest place I could possibly be! Especially since people are now drinking in pubs again round here.

Fingers crossed indeed, and for you too with the rest of your treatment.

Trish x

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Re: May 2020 Chemo Starters

Hi Trish!!!!! I'm so glad to hear from you!!

Totally understand about the getting through it and not wanting to think about it. I've migrated a little more to Facebook which has some great groups (and less good).

 

I wish you the VERY best with Taxotere/Docetaxel. I hope you have a journey much like your someone like me friend!

 

If I can suggest? They will probably say to start taking paracetamol on the 3rd day (well, they did with me). Just make sure you know how to access stronger medication if required in a speedy way, especially if day 5/6 goes over the weekend?

 

I will keep my fingers thoroughly crossed for you!!

Fidget xx

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Re: May 2020 Chemo Starters

Hi everyone

Sorry I've not been here for so long. I've just had my head down getting through this, and then when I had good days I wanted to enjoy them and didn't want to be reminded...

But I've completed my three cycles of EC now and start the 3 Docetaxel next Thursday.  Halfway! I've had varying feedback on that one - including reading what some of you lovely lasses have said about it and also talking to my Someone Like Me friend who had very few problems with it herself. So I guess, as with this whole journey, there's no way to know how you're going to react until it happens.  

Wishing you all lots of love and fortitude

Trish x

 

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Re: May 2020 Chemo Starters

I've bought optrex to manage this! I was fine for first 3 cycles, but eyes began getting crusty a couple weeks ago.

 

Lost most of my head and body hair-not all, but eyebrows are hanging in there!

 

Definitely look after all your soft tissues...eyes, ears, nose, lips, mouth, tongue, front and back "bottoms"!!

Take care xx

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Re: May 2020 Chemo Starters

I have twitchy eye . First two weeks of chemo my eye sight was blurry and found it hard to look at a screen . 

crusty and runny eyes too. Oncologist said this was a side effect . 

Glad you are coping well Daphne X

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Re: May 2020 Chemo Starters

Hello Everyone

I’m on Paclitacol and Traztusumab, and generally doing really well. Wondering if anyone has twitchy eye muscles and a deterioration in eyesight?  I’ve been scalp-cooking and still have eyelashes but eyes are feeling gritty and tired most of the time. 

Also top tip in case it’s useful: chemo is known to generate heat so cool showers, (and especially when hair washing) are supposed to help. I have so far kept my hair - though eyebrows are giving up!

Wishing you all well.  
These threads are so helpfuL I’m always browsing by subject to help alleviate the fear!

 

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Re: May 2020 Chemo Starters

I had surgery before chemo. I think I’m lucky as I’m only have 4 cycles of TC and 9 Herceptin. Then 5 days Rads. Hormone blockers for 10 years .

no lymph node involvement and lumpectomy with clear margins. . I’m not sure I could cope with 6 or more. 

We somehow find that inner strength 💕

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Re: May 2020 Chemo Starters

Hi Sam

yes, this cycle is definitely the worst one. It’s knocked me for six. Keep thinking I’m ok then wham, back in bed. How the heck am I going to get through another 3? The oncologist reduced the dose to 80% for this last cycle too. Not entirely sure why because she hadn’t bothered to discuss it with me but I do know my liver enzymes were elevated after cycles 1 and 2 and the diarrhoea wasn’t fabulous either. 
Have you had surgery already ? 

Sarah x 

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Re: May 2020 Chemo Starters

Hi Tricia, yes I think fever tree was a popular one that helped people with the slime mouth feeling. For thrush mouth that needs antibiotics from your unit fluconzole worked best. But as always just go with what works for you, there are no right or wrongs on this journey you just always do what’s right for you and what works for you 💕💕Shi xx

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Re: May 2020 Chemo Starters

Hi Shi,

 

Drinking sparkling water ? 

Tricia X

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Re: May 2020 Chemo Starters

❤️ Do phone units if you have lot of runny bum 🏃‍♀️🌪🏃‍♀️🌪🏃‍♀️🌪 if you get a slime like mouth Feeling from the t, sparking water has helped with that a bit a tip from previous threads too 👍💕💕Shi xx

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Re: May 2020 Chemo Starters

Hi Fiona

 

i had jaw and teeth pain. Sore tummy with the injections . Pain under the rib too. They gave me oramorph but I reacted to it . It was more stabbing pain with me hitting all the sensitive places where I have had operations or twisted ankle. 

I count down the days knowing Wednesday is my last one and today is the first . How many do you have ? 

First cycle I could only manage 4 but second 5 . Don’t have much choice as hubby enjoys playing Doctor every evening . 

After the last day of taking them you soon pick up . Don’t forget to call the chemo line if you don’t feel right even without temp. 

Tricia X 

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Re: May 2020 Chemo Starters

Thank you - it really is the gift that keeps giving....this is my 4th cycle of chemo, my first though of Docetaxel. Previously EC.

I've been in bed for last 2 days. Getting up to go downstairs for meals, doing a little 150 metre round the block, but that's it.

I feel utterly done! Doesn't seem like last weekend I was having a 2km VERY early walk on the beach!

 

Well, here's to us, in solidarity. Sucky sucky suck suck!

 

 

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Re: May 2020 Chemo Starters

Up the carbs for the runny t bums, also Imodium helps but discuss with your teams first before taking. Epsom salt baths have helped the bones in a vice feeling caused by t, if your skin starts drying out on t, udderly smooth cream with extra urea works really well, it was one lots of us used 👍 the jaw pain sorry I don’t have tip for that, I just tried to ignore it really and onlined shopped to take mind off it 👍 sending ❤️ You are all doing amazing 👍👍😘💕💕Shi xx

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Re: May 2020 Chemo Starters

Sarah we’re on the same regime - have you found third the worst so far? Was wiped out to the point they requested another heart scan! (All fine thank god). I’m hoping it’s not cumulative, otherwise I am going to struggle...! 

Sam x

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Re: May 2020 Chemo Starters

Hi Fiona

When did you have treatment? After my third I spent a few days barely moving, and one of them fully in bed. Just exhausted. Not quite sure which of the drugs it is but seems to unfortunately be normal. 

Same issue with the jaw, hurt to chew, felt like I was always gritting my teeth too. The main takeaway from my oncologist was ‘aches’, haha, so you’re not overreacting and it is very real.

Sucks doesn’t it!! Xx

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Re: May 2020 Chemo Starters

Hey

im on cycle 3 of TCHP (includes Docetaxel) and have a filigrastim injection too. This last cycle I’ve been in bed on and off for a week ! The aches are horrible. They tend to last about 4 days then I’m just wiped out and have diarrhoea for a few days.

It’s the gift that keeps on giving. In fact, I’ve just come off the phone to the chemo line as the diarrhoea has upped a level today (day 12). Don’t need to go in though so fingers crossed. 

Take care

 

Sarah x

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Re: May 2020 Chemo Starters

Ladies - question re Docetaxel and Filgrastim.....I'm so sore! All over....I knew it could cause aches and pains, but holy hell! I feel sore and achey all over, my feet feel cold, sometimes my jaw/teeth feel sore...is this normal? I've read the patient info leaflet, but I can't really retain much of what I'm reading! Feel so fuggy and slow and yeuch.

Basically been in bed for 2 days!

No temp or anything, just wondering if I'm overreacting?

 

Fiona

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Re: May 2020 Chemo Starters

I totally understand the need to know it’s working, totally natural! 
I’ve had one node biopsies on the rhs and that is impacted. They think the lhs is ok from scans. My surgery is post chemo so that’s all I know so far. 

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Re: May 2020 Chemo Starters

Hi Enyoc, do you have nodes affected? That seems to be the decider here in Essex 🤦🏼‍♀️ If you do, you get scans, if not, you don’t!

I just want to know it’s working!

xx

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Re: May 2020 Chemo Starters

Hi Mumbear

I had chemo 3 (of 6 planned) last Tuesday and have an MRI the day before chemo#4 to see if The Grady Twins are being obliterated. I’m on TCHP chemo and am Yorkshire-based. I’m also neo-adjuvant chemo (so surgery is afterwards).

 

Sarah x

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Re: May 2020 Chemo Starters

Hi lovely ladies,

Hope you’re all OK. I’m currently in the chair for round 3. I spoke to my oncologist yesterday and asked him would I have a scan soon to check Clive is shrinking. (Triple neg, no lymph nodes affected). Was told no - I have to have 8 cycles, scan then surgery. I find this very odd that they do 6 months of treatment and don’t check. Is this normal or a Covid thing?

TIA 😘

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Re: May 2020 Chemo Starters

Hi Adriana 

Welcome 🤗

That sounds really difficult! I'm so glad you've found the forum! It's been a big help, especially starting the journey pre chemo. There are so many threads offering all kinds of support and info.

I'm sorry you have to have more surgery..especially after finishing a course of chemo. That feels like it might be like being asked to run another marathon just after finishing one! 

Sending hugs and encouragement to explore and use this space to get the support you need.

 

Fiona xx

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Re: May 2020 Chemo Starters

Hi Adriana,

Welcome to the forum. So very sorry to hear the cancer journey you have been on already. Sounds like you have been very brave to have got through all that treatment. Once the surgery is over you will have completed a massive amount of your treatment. I had a single mastectomy and I am halfway through my chemo.

All of us on here are fighting our personal battles but we are all here to support each other. It must be difficult having young children and trying to cope with your treatment.

Sending positive thoughts and wishing you all the best with your surgery. You are doing amazing ❤

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Re: May 2020 Chemo Starters

Hi everyone, quick reminder please put personal email information into a private message, the forum is open to the world to read, please Keep safe with personal information you share. 💕💕Shi xx

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Re: May 2020 Chemo Starters

Hi Sarah

 

Good afternoon and I hope you are well. My name is Adriana, 45 years old with two children (10 and 7 years old) and I have been diagnosed with Bilateral breast cancer. First they found out only left side September 2019. I underwent two lumpectomy to get clear margins and full axillary node clearance. Unfortunately just one week before I started my chemotherapy, December 2019 I found out myself another lump which was confirmed cancer. I started the. Chemotherapy in January and I just finished . Waiting now for double mastectomy 

I hope you are well.

kind regards 

Adriana

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Re: May 2020 Chemo Starters

Hi girls 

Hope everyone is getting on okay. I’m getting a Hickman line in soon cos my veins aren’t happy and skin reacts 7 ish days post chemo. Think it’s similar to the PICC line but comes out near your collarbone instead of your arm? Don’t know why the difference! 

Daphne - YES!! A week or 2 after I have a horrible headache and sore neck, worse on the right side, worse when I wake up, lasts for days. What treatment are you on? I’ve obviously panicked several times it’s brain mets! But it’s not permanent and improves as the day goes on so blaming the treatment. 
xx

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Re: May 2020 Chemo Starters

Hi everyone

I’m the same. “Great veins!” they always say, and yet was told immediately that I was being booked for a PICC line. So anxious on the day, but actually glad to have it as it speeds everything up for treatment and you’re oblivious!  You have to wear a cover for showers, and make sure when the dressing is changed that it’s comfortable. Mine was slightly redirected at the first change last week and it’s not quite sitting the way I prefer which is alongside my body. 
On another note I am suffering stiff neck and headaches, plus migraines (which I get too). They take me out for hours. Am doing daily exercises, but curious to know if anyone else is experiencing the same?

 

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Re: May 2020 Chemo Starters

And I should add that you do have to go in every 7-9 days to have it flushed and the dressing changed so that does add a further dimension. 

s x

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Re: May 2020 Chemo Starters

Hi

I am always told when I need to have bloods etc that I have great veins. I still opted to have a PICC line though as I wanted to keep my veins that way. 
I found the installation was fine, didn’t feel a thing. Watching the machine is fascinating (not the needle, I can’t watch that going in!). I have to admit that on the first night I was ready to ask them to take it back out. I was convinced I was going to pull it out. However, over the next few Days I got used to it and use my arm normally. I wear a cover at night in bed to ensure I don’t catch it. 
I am definitely glad I had it now. Any questions, just ask.

 

sarah x

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Re: May 2020 Chemo Starters

Hi Mumbear

I hard my second cycle yesterday too. 
I found it emotional and my anxiety kicked in last week. I had to take lorazepam to get me there.

felt better once they started . They gave me biscuits tea and sandwiches hooking me up quickly so I didn’t do a runner 🤣.

 

i haven’t had any issues with veins so far. I take a small hot water bottle with me strapped on the arm. It brings my veins up. 

I feel like a pin cushion and after bloods I bruise easily now. 

im sure there are people on here that have Picc. Most of the patients around me have them. 

Hope you have an easier run with this cycle . 

Take Care 

Tricia xxxxx

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Re: May 2020 Chemo Starters

Hi all,

Hope everyone is well. I had my 2nd session and I must say it was so much harder than the 1st 😢 Found it mentally so much harder to cope with and nearly fainting after the Cannula was inserted again 🤦🏼‍♀️
They want me to have a picc line as my veins are rubbish. But I think (on reading) a port would be better as even getting bloods is tricky. That idea though was dismissed very quickly by the nurse and told I had to have a picc.

Do any of you lovely ladies have them? Any advice/guidance would be really helpful. 
Thanks

Louise