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May 2017 chemo starters

Trisha69
Member

Re: May 2017 chemo starters

Predictive txt. 3 herceptin along side chemo then injections
Trisha69
Member

Re: May 2017 chemo starters

Thanks Jay. Have the feel good makeover tomorrow to look fwd to . How many Herceptin do y have to have? Ive been told 18. The next with the new chemo. Then picc line should cone out abd herceptin injected in leg I think? X
WolfEE
Member

Re: May 2017 chemo starters

Hi Girls, firstly I need 2 thank you all for the neutrophils dances you've been doing for me over the last few days they worked a treat my blood test was good today and treatment when ahead πŸ’ƒπŸ˜€
It was a long day having 2 have the blood test first and waiting for the results before treatment started and then because no picc Line having 2 have my hand set up again but I had my hand in some hot wather for a while and this helped.
So 1st Docetaxol has gone in here's hoping that it won't be so bad over the next few days. Right now I feel fine very well in fact and relieved that my blood was ok and the treatment completed, very tired but feeling good 😊 πŸ€žπŸ‘
curlyh
Member

Re: May 2017 chemo starters

Thanks Treehouse...hope you enjoyed your train ride...I noticed the swelling on day 19 after 3rd fec...did not expect it so long after treatment on the 'good' days!! I suppose it can happen anytime...still have to go to Picc line appointment tomorrow and discuss what will be best will have to be braveπŸ˜•

Jay68
Member

Re: May 2017 chemo starters

Hi Trish69 - yes I had a heart scan before I started chemo and now over half way through I've got my second one on Thursday - they are nothing to worry about - it's basically an ultrasound and so you don't feel a thing only weird to hear your heart beating!  It's good they keep an eye on how your heart is coping - if anything untoward they can prescribe medication - any effects from the treatment on the heart usually rectify themselves once treatment ceases.  They continue to scan you every 3 months I believe - so they really do keep an eye on you!  Good luck for your change in treatment on Friday! J x

Trisha69
Member

Re: May 2017 chemo starters

Thanks Jay. I have had 3 FEC and start on your concoction on Friday. Was feeling apprehensive til read your blog. Have heart scan Thursday and they have warned me will be there 6-8 hours. My best friend coming with me. Travelling 120 miles to do so. β™₯
Jay68
Member

Re: May 2017 chemo starters

Hi Kala - I've been having chemo since May 11th - and although I'm an avid reader and follower I've never commented on here before, but as I read your message I just want to pass on some reasssurance. I'm 12 days on from my 2nd lot of Dox with herceptin and pertusamab and I can honestly say for me personally it's doable!  Days 1-3 are good - steriods keep you buzzing.  For me days 4-8 are the worse - my mouth and throat are always the worst bits for me - hungry yet anything in my mouth feels alien!  Achey/tired/moody etc - all doable just inconvenient.  Then from day 8 you may experience explosive diarhhea, again not pleasant!  The first time you have this chemo with the targetted therapy expect 2 long days.  I had the herceptin and pertusamab on a Wed and was in the unit for 7 and a half hours!  The first lot of Dox I was there for about 3 hours.  The reason for this is they adminster very slowly - and keep a careful eye on you for any allergic reactions/symptons - but honestly as long as you're calm you'll be absolutely fine.  On a plus point it might all seem aggressive compared to the EC I was on before the Dox but after 2 treatments of this little cocktail I can no longer feel the lump in my breast, all puckering of the skin has gone too - don't know about the lymph gland as I've never been able to feel anything there anyway - but at least it may be tough and the side effects unpleasant but it's kicking cancer's arse and for that I can only be thankful!!  J

Raitchr
Member

Re: May 2017 chemo starters

Yes early morning toilet trips for me too and no constipation, more the opposite!

 

Hoping the weather picks up a little as wet and windy here in Lincs...

 

H

Mai7
Member

Re: May 2017 chemo starters

Raitchr, sorry to hear your lie in was hijacked by your own body clock!  TMI Alert:  I'm finding the Docetaxol seems to be waking up my bowels early in the morning (like 4am goodness sake!).  Have you found that at all?  Enjoy your 10 good days! 

Mai7
Member

Re: May 2017 chemo starters

Hi Kala, I'm on Docetaxol but not Herceptin (I'm ER+/HER2-). I've found the Docetaxol easier on day 1-3 but day 4/5 more tiring. Just lower energy levels and a few aches and pains. I think you just have to be prepared to rest it out on this drug and don't try to force yourself to stay active if you have no energy. Just give into it. Try not to worry, change is hard after you've got used to one drug, I know I felt the same anxiety for my first dose but it was easier than I built myself up for.  I've just found my taste has been affected a bit more on this drug, everything tastes bland and I crave salty food! I'm sure your husband would be happy to give you a big hug when you let down your wonderwoman barrier!  Treehouse has commented on some of your drugs, it looks like you guys have some similar cocktails! Take care. Xx

treehouse
Member

Re: May 2017 chemo starters

Curly thanks for sharing, how long after treatment did you notice ? Interesting that this happened without a picc line. I know we are at greater risk of clots but we don't seem to have been warned what to look out for. Sending hugs.


Kala hi I am on docetaxel, herceptin, perjeta and carboplatin. Have now done 4 cycles. Perjeta caused acne πŸ™ƒ.
And I get aches day 4 to 10.
Please rest and look after yourself. You will get through this.

As we are not having a proper holiday this summer we are doing family fun days instead. Starting today with the seven valley railway.
Off to catch a train πŸš‚ 😊😁
busybeeS
Member

Re: May 2017 chemo starters

Hi Katie. I'm having my 5th FEC on Wed. Unlike most who have swapped regime half way through, I'm having FEC for all 6 cycles. Still feel ok though and managing to work ful time and get out for long walks - I have definitely got off very lightly compared to some for SEs. Fingers crossed this one goes ahead. After this, as I'm so close to finishing chemo I'm going to have to start researching radiotherapy (23 doses) and tamoxifen (min 5 years). I've been asked to go on a clinical trial into the effects of aspirin on reducing recurrance rates after radiotherapy has finished as well..... More research to do.

Has anyone else been approached to take part in any trials?

Good luck to everyone on treatment this week. Hope SE keep to a minimum for everyone.
Kala
Member

Re: May 2017 chemo starters

Hi Mai. I am starting doxy on Wednesday and Thursday I am having herceptin and pertusamab. I'm so scared this time as have read about the reactions you get on doxy and herceptin. I was wondering if you are also on herceptin and if you can tell me f they are prepared in the unit if you do get any reactions. I'm such a wimp. I found fec not bad and coped fine with the side effects of tiredness achy bones and nausea but this time I'm more anxious than ever. My oncologist has referred me for some hypnotherapy so I'm hoping this may help. You seem to write a lot on here and you are so positive which I have been up to now and I don't want to show my family and husband I'm not coping as I'm the one who holds everything together πŸ€—πŸ€— so pleased your coping well on doxycycline so far and only getting little side effects. Xx 

Raitchr
Member

Re: May 2017 chemo starters

Hi everyone. Was supposed to have a lie in as no school alarm and still woke up at 6am! May be I will get the hang of it over the next 6 weeks

 

I just have Onco appmt on Friday ahead of 2nd T on 3rd Aug. Looking forward to 10 good days before next poisoning.

 

Hope everyone is feeling ok and side effects are reducing. 

 

Take care everyone.

 

Heather

 

 

curlyh
Member

Re: May 2017 chemo starters

Morning...I don't post on here often but read what is happening and find all your info very helpful..so thought I would share something else to look out for...yesterday morning my treatment arm was more painful than usual some bruising had appeared on forearm and a swelling in the inside of my elbow no redness but sore to touch...temperature ok phoned and they told me to go in to hospital for check...it turns out to be a blood clot in superficial vein not a dvt thank goodness ...so now on blood thinning injections also although junior doctor didn't think it was anything consultant just felt my arm and knew and confirmed with ultrasound...next treatment wed my first 'T' so worried enough about that and got an appointment for Picc line to be put in tomorrow as veins were a problem last time..so not sure if that will go ahead will have to phone and try to speak to someone today...I just find all this worry and constantly checking se and changes in body so hard sometimes as I know we all do...all the best to everyone dealing with se and treatments this week x

katie11
Member

Re: May 2017 chemo starters

Thanks wolfee. Have replied. Good luck today.

Anyone else this week?

How you getting on Trish? Don't feel like we have heard from you for a couple of days ? Xx
WolfEE
Member

Re: May 2017 chemo starters

Katie I've got it and sent a reply
It's true I felt the same each and everyone of you i would trust with my address etc but sometimes it's easy to forget it's an open page it does feel sometimes like it's our little private world. X
katie11
Member

Re: May 2017 chemo starters

Thanks treehouse!

Think I have done it wolfee let me know if you don't receive it. I don't have fb. Xx
treehouse
Member

Re: May 2017 chemo starters

I know we are a lovely bunch of ladies that I trust to share intimate details with but remember any one can read what we put here so keep it secure on public page. X
treehouse
Member

Re: May 2017 chemo starters

Sorry to but in ladies I have used private message on my phone. If you click on the pink home you can turn private messaging on then use the envelope at the top of the page.
WolfEE
Member

Re: May 2017 chemo starters

Good question. I think you can private message on this site haven't done it yet because I normally log in on my phone. Are you on Facebook? I think I'm the only Emma Brandom. You could private message on fb? X
katie11
Member

Re: May 2017 chemo starters

Thank you xxx

I'll try and work.out how to.message you lol x
WolfEE
Member

Re: May 2017 chemo starters

Not at all I won't be needing it. And no money spend the money on some Epsom salts so you can enjoy that bath xxxxx
katie11
Member

Re: May 2017 chemo starters

Are you sure you don't mind wolfee? Do you have PayPal? If you send me your email I can send you some money for it and postage x
Mai7
Member

Re: May 2017 chemo starters

Treehouse, I'm feeling a bit better after a rest. My temperature went up to 37.3 but has dropped back to 36.7 now so that's good!  The slap-cheek! What's that all about? Is it an allergic reaction? I'd been sitting in the car earlier whilst my partner shopped in the supermarket and the car was a bit warm so that could have triggered it.  I've just eaten a big bowl of melon which was very cooling and soothing.

 

WolfEE, the neutrophils are on their way πŸ‘»πŸ‘»πŸ‘»

 

Ladies, we are still beautiful even wth bald heads! Don't let temporary aesthetics get you down. I saw a quote the other day which I liked:  "the comeback is always stronger than the setback".

treehouse
Member

Re: May 2017 chemo starters

Doing a neutrophils dance for you Wolfee πŸ•ΊπŸ’ƒ
It will be good 🀞
WolfEE
Member

Re: May 2017 chemo starters

Katie11 - did you want my bath arm cover? If you look on a website called live better with it's the see through arm thing they are quite expensive so don't go buying one mine was only used twice I can just pop it in an envelope Royal Mail??
WolfEE
Member

Re: May 2017 chemo starters

The most annoying thing if my chemo does get postponed tomorrow will be that I've taken the dreaded steroids for no reason!!!!! I've had 2 take some today and tomorrow morning before I go!!
I have high hopes for tomorrow though I'm thinking my blood will be ok it was just low because it was tested Friday πŸ™πŸ€ž
treehouse
Member

Re: May 2017 chemo starters

Ooh Mai was laughing at the looking like you had been slapped not the feeling like road kill. Sorry.
Bed and Netflix is my prescription. My neck and chest also go red. Just keep taking your temp to be sure. X sending πŸ€— hugs. X
treehouse
Member

Re: May 2017 chemo starters

Ha ha Mai
Yes sorry I get it for a day or so. I thought it was from the steroids. It goes .
I assume you have all had those weird and wonderful side effects.
treehouse
Member

Re: May 2017 chemo starters

Good for you MJK you can borrow my transfusion for that one. I have know jehova whitnesses, lovely people but the whole transfusion thing makes no sense. It is easy to be idealistic when you are not critically ill.
Have a nice anniversary Katie. I do know exactly what you mean. We are celebrating 2 years next week. Not exactly the happy ever after we had planned. I feel like I ruined everything.
Also not feeling very attractive either. Husband made a comment that upset me. He is usually really sensitive but this hurt. Will try to talk to him later. I am currently cooking a big Sunday roast as BBQ looked like it would get rained off.
So glad we got each other to share.
Mai7
Member

Re: May 2017 chemo starters

Has anyone else on Docetaxol had facial flushing? Both of my cheeks look like I've been slapped hard.  Feeling a bit roadkill today. 

MJK
Member

Re: May 2017 chemo starters

Hi Katie, happy anniversary. Your husband signed up for 'in sickness and in health' even if it wasn't what either of you had in mind 6 years ago. I'm not sure when you had the PICC line fitted but after the first few days I haven't really noticed it. I'm joining the pj day today I've got a cold and my period (2 1/2 weeks after the last one -not funny with bloods on Tuesday). The Jehovah Witnesses have just called. No offence if you are one, but their Kingdom Hall is just down the road and they always seem to come to us first. So I came down in my pj's and said 'I'm a cancer patient on chemotherapy needing transfusions to keep me alive so please go away and don't call again.' Bless them, I've never seen them leave so fast (ok, I haven't needed a transfusion yet..). Hope the bath helps the aches ladies. I'm not looking forward to T on Thursday but will be having shallow baths with the PICC covered.
Anniej
Community Champion

Re: May 2017 chemo starters

From one Annie to another ....I used to put my H line in a small plastic food bag and tape it high across my chest. Having a bath is bliss! Poor you. X

WolfEE
Member

Re: May 2017 chemo starters

Katie11, I didn't have mine in for long (gutted because the one single chemo I got out of it was so much easier) I had it fitted on a Wednesday morning that evening I had a shooting pain right inside my arm pit (I think I may have even mentioned it on here at the time?) anyway that pain was still there on Monday chemo day. I told the nurse and she said that can happen but if it still hadn't gone by the end of the week let them know (so within 2 weeks) anyway that weekend I got bitten on my ankles and hand by an insect my hand was red and swollen so I ended up at a&e twice Saturday morning and again Monday morning and was put on penacillin. I told the a&e department that the pain I had in my arm pit since the bite has come back could it be a problem with picc and not the insect bite they said my lymph nodes maybe swollen due 2 the infection.
So my picc clean and flush was scheduled for Friday but a&e had looked at it and not cleaned it and left the dangle digging uncomfortable in my arm so I called the chemo ward and asked if I could have my clean and dressing changes early so it can be more comfortable.
So I did they said come down now. I was telling the nurse what had happened and said my swollen hand now looks ok but the arm pit is still sore she got the doctor who felt under my arm (didn't feel swollen) he looked at my blood results taken at A&e and no sign of infection so I went straight for a scan that showed the blood clot so the picc line was taken out there and then.
I personally feel the blood clot started imidiatly the day the picc went in and I don't believe I had an infection from the insect bite I think it was all because of the picc line so maybe the insect saved my life in the end.
The doctor did say that most of the time if someone will develop complications from the picc line it does appear 2 happen in the first two weeks that's what he has noticed. Most people who get through the first few weeks generally do not have any problems after that.
I miss the pic line, it was uncomfortable when sleeping and having a bath but the chemo and blood tests are so easy. If I had been allowed 2 keep it I would have.
It is scary that's for sure and I'm gutted now I have 2 do injections for a very long time. But try not 2 worry they will check it all over when you go for your flush and I think somehow your body would let you know if there is a problem just any niggle you have tell them. X
katie11
Member

Re: May 2017 chemo starters

Oh ladies this chemo isn't much fun is it! Can't wait for the first line now. Feeling fed up of it all and just want it finished! Going out with hubby today for anniversary but couldn't feel less attractive, almost bald, scars and reduced sized boobs and a wire dangling from my arm. Sure he didn't sign up for this 6 years ago! Oh and period has decided to make an appearance today! Was so hoping these would stop! Sorry moan over x

As for this picc line anyone, how long does it take to not feel it or do you always know it's there? Just still feeling paranoid especially what happened to you wolfee. What symptons did you show for your blood clot if you don't mind me asking? Think I just haven't got use to it and and want to pull it out! X

Enjoy your pj days ladies xx
treehouse
Member

Re: May 2017 chemo starters

Mai I too get ear ache every cycle not for long and no temp so it is becoming an se friend to tick off. I also get a lumpy throat. Not sore exactly just feels like there is swelling or lumps. Doesn't last long.
Badger muscle rub came in a chemo survival kit from my brother. Organic cayenne and ginger. Smells nice and has a warming effect. Tiny little tin like lip balm. But you don't need much. I sit at hubby feet while we watch GoT and he rubs my shoulders. Keeps me sane when it hurts to sit back and I get all fidgety.
Rosie65
Member

Re: May 2017 chemo starters

Mai - taxol seems to affect my tongue too. I've found a spoonful of Manuka honey dissolved on the tongue several times a day has almost cleared it completely . Also lots of ice lollies, I found that tip on an American site

 

My Manuka honey has now run out.....aargh.......it's so expensive!!

Mai7
Member

Re: May 2017 chemo starters

Thanks Raitchr, I ate a load of dark cherries last night! So far I put a drop of tea tree oil on my toothbrush, I've gargled with apple cider vinegar and rubbed raw coconut oil around my mouth. Whilst the coating on my tongue hasn't vanished, it hasn't got any worse so hopefully I'm keeping on top of it.  I'm feeling generally a bit lethargic and have found that I get random shooting pains which move around my body.

 

Treehouse, I can relate to the neck pain - I've had shooting pains in my neck and into my ears but they don't last long. I also keep feeling slightly asthmatic/wheezy but not much.  I like your fruit collection, although I'm sure I spotted a slice of cake in there! Badger oil? Pray tell......

 

AnnieA, take it easy and have a veg-out day. It will get better. We just have to get past these first few days. Xx

AnnieA
Member

Re: May 2017 chemo starters

Morning treehouse yes this is my first 'T'. I had steroids the before the day of and the day after and 5 injections. I do feel exactly like I've been hit by a bus. The paracetamol and ibuprofen do take the edge off but not for very long. I haven't had a bath because I have a Hickman line in but I'm defiantly going to run a shallow one today even just to soak my legs. Thank you very much for reassuring me that this passes xx
treehouse
Member

Re: May 2017 chemo starters

Annie is this your first T?
Did you have steroids? Do you have injections?
My first one was the worst. I felt like I had been run over by a truck. Aches everywhere mostly my neck. It started when the steroids ran out I then spent about 3 days in bed. Recovered when injections stopped. I have the same pattern each cycle but no where's near as bad as the first time.Take paracetamol and warm baths. Onc gave me stronger pain killers but they make me feel spaced out. My husband rubs my shoulders with badger oil that feels nice.
REST is does get better.
I know how you feel x hugs
AnnieA
Member

Re: May 2017 chemo starters

Hi Heather, I can definitely relate to your side effects. Today will be another pjs day for me. I feel like I would feel slightly better if I could just sleep 😴
Thanx for replying it makes me feel a little less insane x
treehouse
Member

Re: May 2017 chemo starters

Thanks Rosie. I have done 4 cycles now.
Let me know how you get on with onc.
Yes I am eating lots of strawberries πŸ“ too. In fact all fruit πŸ‰ πŸŽπŸπŸŠπŸ‡πŸŒπŸ’πŸ‘πŸπŸ₯‘πŸ₯’πŸ πŸ«πŸ°
Raitchr
Member

Re: May 2017 chemo starters

Husband has just reminded me that I ate a massive dish of strawberries when my mouth was white and furry, they are anti-inflammatory and antioxidant, that may have helped stop the oral thrush in the week.

 

H

Rosie65
Member

Re: May 2017 chemo starters

Yes the pain isn't constant, painful if I prod it. It just appeared out of nowhere. I've only had one carboplatin, next one due this Thurs, but rbc was going down all the time on EC. Am seeing the oncologist on Monday so will speak to her, I'm supposed to have four lots of carboplatin over the 12 week cycle.

treehouse
Member

Re: May 2017 chemo starters

That sounds just like me Rosie although the pain is not constant and is a bit like burning. I too am on carboplatin. How many have you had? I was wArned it would affect RBC. I am surprised they have not offered you a transfusion. Call them if you continue to get breathless or your pulse gets very high. I had a pulse rate of 125 just sitting still.
Feel amazing after 2 units of blood.
Rosie65
Member

Re: May 2017 chemo starters

Treehouse - I have a very sore big toe, it is a small red, painful lump on the side of the toe. I have self diagnosed it as gout, a side effect of carboplatin caused by raised levels of uric acid. 

 

btw my rbc is still low 89 but they still went ahead with chemo on Thurs so I'm getting increasingly breathless, not sure how low they'll let it go before I can have a blood transfusion

Raitchr
Member

Re: May 2017 chemo starters

Annie I power napped all day last Sat and Sun which was day 3 and 4. I had 2 baths with muscle soak and stayed in my pjs all day. You just have to rest and I found bed was the best place for me. I had the electric blanket on all night on low just to warm my bones in the night. It does get better. I was also weepy, but was the same on FEC too. My husband just knows to give me a hug so I cry and get it out of my system. 

 

It will get better and you will feel better soon, sending you a hug.

 

Heather

Mai7
Member

Re: May 2017 chemo starters

I hope tomorrow is a better day for you AnnieA. I'm expecting some aches and pains tomorrow as it will be day 4. I took some ibuprofen earlier. Whilst I don't feel partcularly achy, I feel various weird sensations like a few seconds of earache which disappears as fast as it arrived, pains in my ribs which again disappear again.  It's all very strange! The nurse warned me that Docetaxol can cause depression so stay self aware and realise that your irritability could be a psychological side effect.

AnnieA
Member

Re: May 2017 chemo starters

I can't manage more than a 20 minute power nap here and there. My whole body aches from my toes to my shoulders. I'm extremely restless and irritable. 😞 keeping topped up on painkillers and hoping for a better day tomorrow xx