@naughty_boob thsnks, ill see how mucj i lose over the next 10 days before making a decision xx
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Hi Dragonlfy2
I tried cold capping on round one and am now considering whether to for round 2.
I found it quite difficult and disorientating as I could not get my glasses on properly nor hear anything clearly with the cap and cover over my ears.
My hair started to shed significantly from day 15 so I cut it off this week with clippers. My scalp was hurting and the shedding was leaving chunks of hair all over the house but I did have long thick hair.
After cutting I could see I had some very bald patches although there is still a lot of hair in other areas. Bit shocked at the shape of my head!
Iāve got some head coverings from wrapdinlove etsy and some scarves that I have learned to tie.
I donāt think I am going to continue with the cold capping now its all off. Not sure about getting a wigā¦Iāll probably see how it goes. The nurses have told me that if you carry on cold capping it grows back quicker and better but Iām not sure what the data is. I can see that with the amount of hair I had and some careful styling I could have persisted with hair providing I didnāt lose much more so it might be worth you persisting if that is the case for you.
P x
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@pickle the data the nurses are quoting are from Paxman the makers of the cold cap machine mainly used in the U.K., they are independent studies. See the Coldcap website I quoted above. If you do continue with bald patches ensure they are covered by gauze or a surgical cap to protect your scalp.
I also struggled with my glasses which are varifocal, but I managed to get them sitting correctly outside the cap with a bit of adjusting.
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Hello everyone, just joined and need advice, terrified at the moment.
Iām HER-2 positive and start chemo next Wednesday. Phesgo SC x 18 cycles and Carboplatin and Docetaxol IV x 6 cycles.
Is anyone on the same regime and how are they doing with the side effects?
Any advice on what to buy in preparation?
Many thanks in advance 
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Hi everyone, had my second infusion of paclitaxel yesterday. When the steroids went in at the start, I had a bit of a fainting fit (I didnāt actually faint as I was lying down but I could definitely tell I would have done had I been a bit more vertical!). The fab team managed it all well, gave me an extra bag of saline and took the main infusion slowly, and obvs I will discuss this with my oncologist at my appt on Mon. But wanted to see if anyone had (or had heard of) a similar reaction? TBH I struggle with medical things in general (I have been known to faint whilst watching hospital dramas on TV!) so itās probably just that but any advice welcome 
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Ladies, I am really excited about this.
Primark have launched an adaptive range of clothing which you can order click and collect from 28th January. The range includes tops that allow access to PICC lines etc. Also includes front fastening bras with magnets to help close them. Heres the link for more info. (Click on any of the pink words for the video) ā¦16.166 Aufrufe Ā· 3.859 Reaktionen | Clothes for EVERY BODY And thatās just how it should be šš½ What a collab?! @victoriajenkins x @primark - #primarkadaptive šCongratulations on your new collection guys, itās absolutely incredibleā¦ and so very needed. Got a bit emotional seeing it all today š„¹ This collection has been years in the making, just hearing everyone talking about it todayā¦ you can tell it comes straight from the heart and itās a labour of love. The clothes are soooo sick š¤© So many cool details and design featuresā¦ and a wide range of clothing tooā¦ from underwear, to sports wear, PJs and even evening wear. The black dress that Victoria is wearing is stunning and has an accessible compartment at the front. Perfect for any fellow ostomates or anyone who may need that feature š¤ Thank you for making the you high street a more inclusive, accessible and welcoming place! Please make sure you check this range out too ladsā¦ I get so many men ask me about stoma suitable clothing all the time. Itās here šš½ And as youād expect, all the above comes at Primarkās fabulous price points too. Get in šš½ | Adele Roberts.
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Sorry to hear you had a reaction, I canāt speak for your chemo med but been a few of us over the years had a reaction on docetaxol. It can be 
but as you say your team dealt with it swiftly, theyāve seen it all before and took care of you 
your onc might offer you an alternative chemo thatās what mine did and I know other were offered an alternative chemo too just wanted to share, Iām sure others will pop on too with their experiences 
Shi xx
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Hi @fimac1
I am having 3 EC followed by 3 Docetaxel. Also every 3 weeks. Then radiotherapy
I have had one cycle and having second one Tuesday.
I wont lie the first week was a bit rough but I was surprised that I bounced back and now feel in a good place to take on my next round.
Hope all goes well for you
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Hi all
Been busy trying to read and catch up with fellow January starters - I do find these threads quite hard to follow 
so bear with me if I miss a reply or post
Had my first chemo (docetaxel and cyclophosphamide) 15th Jan - next one planned for 05th feb. Generally feel sick most of the time - Iāve been taking the anti sickness and find if I have a snack when I start feeling sick it helps. Had intravenous steroids before the first dose made my face a little red later that day and found I couldnāt really sleep first night - Iāve tablets to start the day before next round. Have been injecting filgrastim since day 3 and have last one this evening - had a few stomach problems diarrhea most days but sometimes only one or twice so itās been manageable - the biggest and hardest day/night was Tuesday had horrendous back pain and was going to go to a&e as I thought id ruptured a disc or something but after doing some reading on here found its side effect of injection - itās better today and Iāve found taking paracetamol and ibuprofen- alternatively every 2 hours allowed me 6 hours sleep last night albeit on the sofa as only place I could get comfortable - So had better day - although my head is banging now and I feel worn out but Iāve not had many painkillers today so maybe that was also helping my headaches. Iāve not rang helpline as yet as Iām managing but Iāll make sure I mention my side effects at my next appointment as I never know what would be relevant and what isnāt lol
Hope your all managing ok and resting when you can x x
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Make sure to take your temperature if you are taking painkillers as it can mask infections. You hopefully shouldnāt feel sick while on chemo, they give you anti sickness drugs to stop it, if your tablets are not working well they can swap to another type that may be better. If something doesnāt feel right I would call your helpline.
Take careš„°
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Evening everyone.
Had my first Oncologist face to face on Wednesday. Felt a good idea to see him face to face instead of zoom (weāre two hours away) and it was worth the drive to cross the Tās and dot the Iās in person. Was worried about my on going raised temperature bobbing up and down to 37.5. I have a small swelling under my arm which is probably an angry hair follicle and Iām waiting for an op for an inflammed knee so he said these were the likely culprits. Just to keep an extra eye. We also discussed a PICC line and after giving me the stats of risk I decided to sleep on it. My mums PICC lasted for ages with a close eye.
Had my 2nd EC yesterday, made a couple of new friends and had a good chat with the Oncology Clinical Nurse Specialist (CSN).
My main reason for wanting a PICC line was so I could ice my hands and feet for the 4 rounds of Pacs. Weighing up the risk of infection and clotting have decided to compromise with icing feet and one hand, alternating each cycle, icing at home and if I have any hand symptoms to lower the dose and ice that particular hand next session. Thoughts welcome.
Maybe @Shi or @naughty_boob , your input would be welcome. 
Hope everyoneās keeping safe in this wild weather. 
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Indigo 2 if your temperature is raised phone your rapid response immediately, your team need to know as soon as possible again for any concerns regarding pic line icing of hand and feet or suspected clots ring your rapid response number immediately. Your team are their to safely navigate you through chemo, they donāt mind you being vigilant and calling them even if you think things are nothing and you donāt want to bother them you must do your helping them get you safely through Shi xx
Hi Shi, thanks so much for your reply. It was more about your experience in icing and picc lines on the forums that I was thinking.
The team made it very clear what to do with regards to contact the helpline re temp which we did and they were brilliant.
I sadly had 3 traumatic episodes of neutropenic sepsis with my mum ( nothing to do with her PICC though) so extra cautious and a big decision vs the risk of neuropathy.
Learning all the way and really appreciate any help or opinions anyone has.
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sorry I didnāt have a pic or port during chemo, straight into hand also didnāt ice hands or feet had 3 fec 2 docetaxol and another fec. I did suck ice lollies each round of chemo to help preserve mouth a bit but still ended up having oral thrush each round for which I had fluconzole do also try the ask the nurse option on here for your questions about icing and your pic and Iām sure others will share their experience with their pics and any icing to hands and feet theyāve done Shi xx
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Thanks Shiā¦and thank you for the fluconzole heads up. When I refused the drops I almost said āShi says so!ā 
Did you get the capsule every cycle?
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Hi indigo yes, I asked my onc to get them in my goody bag of meds so I could start taking them as soon as it started up so I didnāt have to go back and forth to docs or hospital trying to get hold of meds to sort much easier if they are already in your bag, I also got difflam mouthwash in my goody bag too. It can feel like juggling 10 balls in the air during chemo, thrush mouth, botty block (crates of anosol, senokot, movicol, prunes and baby wipes if that starts) or hurricane bum (Imodium and upping your carbs helps if that starts), running eyes (visceral tear drops help with that if that starts) Epsom salt baths if the bone vice pain starts from your filistram wbc jabs helps, thereās so many tips and tricks that have been shared down the threads over the years you find what works for you as and when you might need it) Shi xx
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Thanks i have been and it seems to be normal - I just feel sick but having the meds and eating a little often is definitely helping x x
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@shi, yes I have the list thanks to you and others amongst these threads.
I asked my gp for some of them to be ahead of the game but was refused until āany symptoms beganā which was very unhelpful. I ended up buying some and using āThe Pharmacy Firstā scheme, which may just be in Scotland??
Thanks again for your help , I think I may ask my Onc CSNs for repeated thrush treatment in my goodie bag too because I have already got symptoms ātopā and ābottomā again 
Wishing everyone a positive weekend and heart felt sympathy if you have been affected by the storms.
Katie
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@indigo2 I had a PICC line and it saved having a cannula every week for 12 weeks and they could take bloods from it. I have trouble getting blood out normally so it was great for me. Itās not without itās problems, you need to cover it with a sleeve/stretchy bandage under your clothes to protect it from rubbing or moving, then a waterproof one for bath (with arm resting outside) or shower. I had a couple of blockages but they were able to clear with multiple flushes and waiting in between. They have to flush/clean it weekly and change the dressing. I also had problems with the dressings but there were many options. They keep a really close eye on you with. PICC and ask you to watch out for signs and symptoms of infection or clots. Hundreds probably thousands of people have them every year and only a small number probably have problems many of them are easily overcome.
I found this and a quick Google search can provide many information sheets from hospitals about caring for your PICC at home and what to expect.
I iced my hands and feet at home the day of chemo and the following day as I wasnāt able to ice at the cancer centre due to travelling distance and the fact the hospital werenāt able keep my ice packs/ slippers in a freezer for me. I have some neuropathy but it wasnāt all the time so my team were ok with it. On my chemo thread some ladies were able to use leg and arm sleeves at their cancer centre, I believe it was the Christie in Manchester and found the icing helped a lot and they had very little nerve issues.
Overall I think itās worth a try, itās a bit like cold capping, which I did and was very successful, you need to see if you can tolerate the cold.
As far as meditation I found a call to the oncology helpline was best and they would tell the GP to prescribe, it saved a lot of time. At your next clinic appointment ask your oncology team to ensure you have loperamide/immodium as the Docetaxel/Paclitaxel is known for causing diarrhoea. I was prescribed Nystan for thrush, it worked for me, but like everything we all react differently. My team were reluctant to give me tablet form as it has to be processed in your liver and it was working hard dealing with the chemo and all the premeds drugs given intravenously.
Take care and let us know how you get on if you try the ice cooling or PICC.
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Thatās so helpful, thanks very Ymuch. Iāll have a good Lovely read of that link as well. I think we were all individual and have to have a work round and I will certainly try your option of getting medication a different way, it sometimes very frustrating when you certainly have good anecdotal evidence on here that all these bits and bobs are going to be needed. My consultant said there was a 50-50 chance of infection and clots which I found quite alarming and didnāt quite sit with the history of Mumās picc line which sat beautifully for a few months and as you say itās all about good care and attention.
Thanks so much for taking the time to write. Have a lovely day.
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