@Curlywurly1 So sorry you feel so rubbish. It’s all one big pile of poo isn’t it?
im on cycle 3, number 2 of my weekly dose and Herceptin and the side effects are definitely accumulative. Apart from the fatigue & pain my heels are totally numb, I am totally bald, and fingers starting to loose their dexterity. They have taken my Abraxane down to 80% but it’s getting worse. I have managed to keep positive but this week found myself getting upset and annoyed about the fact there are still 5 more weekly treatments, 5 more lots of weekly blood, 5 more Picc line changes (never knew I was also allergic to the allergic dressings!) then radiotherapy starts…it can get a little overwhelming.
not sure about anyone else but as much as I have attempted to exercise, I can’t really, my muscles & bones ache so much and just walking for 10 mins wipes me out.
keeping my eye on the end though, Christmas will be here soon enough and then apart from the injections, the appointments will slow down and some sort of new normal will move me forward as it will us all.
sending love & thoughts x
You are all absolute warriors and such a huge inspiration and support through all of this… I am always so sad to hear of your struggles but always so awed by your relisience and strength through it. You may feel like you’re not winning every moment but every time you pick yourselves up and keep going. Never forget how much strength that takes and how incredible you are.
I suppose we need to remember we aren’t stronger than the drugs and I suppose that’s the point of the drugs- to be ruthless against the cancer. Just wish it wasn’t this poo!
I completely concur with the treatment being the worst bit but that the treatment for what the treatment does to us being just another kicker… this week I had a blister on my toe which became an oozing open wound and an infection and the antibiotics then caused horrendous diahorria and I’ve not made it out of bed yet since. It is just so not me to be in bed for hours and not out and about walking, running, I’ve lost a lot of me.
And I’m cross as I am really trying to put weight on for surgery and my body rebels and it all just fell out of my &rse ??
Tough times but some light ladies, even if its only a flicker
Just had a phone call from the radiologists and they tell me I need a CT scan as part of the review and radiotherapy planning…do I need to worry, is this normal, no one mentioned it beforehand?
Sorry to stress but I’m only feeling half human at the moment and haven’t even thought about next stage treatment
@Curlywurly1 just thought I’d respond to the question you had about a CT for radiotherapy planning. That’s totally normal, they sometimes refer to it as the CT Planning scan, which is used plan your specific radiotherapy treatment. Its typically done 1-2 weeks before the actual radiotherapy sessions start. I had my CT planning scan this week and start radiotherapy next week.
@I have 3 more weekly chemo sessions to go - last one is 10th August and I’m all booked in got radiotherapy planning scan and radiotherapy sessions. I feel like the end is in sight for the worst of the treatment.
xxxxx
As we all do, I work my life in chemo cycles of good and bad days/weeks for seeing people…! And I like to book one good thing in the diary for just before each round so I have a great memory to get me through the impending days of doom!
Normally they’re a dinner with a friend or something outdoors… I take the stance that as I’m on the steroids and the longest time since the last the last round so maybe the safest time going.
But, my chemo is on Saturday morning and I’ve been invited to the cinema on Friday evening for a girls night. Is this safe? Xx
Good on you for planning some lovely treats before chemo. Such a good idea. But…you obviously have some doubts about the cinema with close proximity to others or you wouldn’t have posed the question. Sometimes it’s good to listen to that inner voice/intuition/gut feeling or whatever it is and follow its advice.
I always wear an FFP2 mask in crowded and confined spaces like buses and trains, and wear gloves to avoid touching handrails, bus bells etc. I also carry a small bottle of hand sanitiser and use it regularly. maybe this could be a way of enjoying your cinema trip more safely. I know it’s hard but don’t let those lovely friends hug you either. Whilst you may be OK it would be wrong to accidentally carry Covid or any other infection into the chemo suite with you on Saturday both for your sake or for others.
Whatever you choose as your morale booster on Friday I hope you have a great time and that all goes well on Saturday. With love and hugs from Tulip x
Hi everyone, How are you all getting on? It’s been a while since anyone has posted on the May Starters thread. I imagine the move over to the new platform has slowed us down a bit, but I also wondered if some people have completed their chemo now?
I have just had cycle 5 of 6, so I’m beginning to feel like there is light at the end of the chemo tunnel. Docotaxel has been a bit different to EC. The extra steroids have made the first week easier to bear with less nausea and tiredness, but week 2 has been harder. I’ve had the sore nail beds, the loss of taste, and a nasty rash which was unbearably itchy for about a week! I managed that with piriton and E45 cooling gel, on the advice of the nurse. All-in-all I think I’ve been lucky though, and as I work term-time only I’m not working through these last two rounds.
I’m looking forward to it all being over and starting to grow my hair back (fed up of the headscarves now), although I do still have worries about cancer coming back.
How is everyone else doing? Stay strong and sending hugs to all who need one.
Hello Rosehipbandit, Good to hear you,'re almost there with the chemo but sorry to hear about your painful side effects. I had my 4th and last EC on 31 july as it took me 28 days to recover each time. Still can’t taste food and started to develop peripheral neuropathy from the Cyclophosphamide. Took decision to refuse the Paclitaxel so was denied the Phesgo and have now been referred for surgery. Seeing surgeon to discuss on 29 aug. Am very scared about the op as I have type 1 diabetes. Will op for mastectomy but not sure how I will cope with the trauma of losing a breast. Celebrated my 66th birthday last week so am now officially an oap. Decided to start a healthy lunch club for my five neighbours who all have cancer using recipes from the Penny Brohn site and hope to have first get together before my op. With love and best wishes to all my fellow travellers on the road to wellness from Tulip x
Sending hugs, Tulip. It sounds like you’ve been through a really tough time. I had the mastectomy and it was a shock at first but I really felt like I had no choice but to accept it. I kind of worry that the trauma might all hit me at a later date when I’m least expecting it. I still worry about my other breast.
I love the idea of the healthy lunch club. I’m going to check out Penny Brohn - I’m a bit food obsessed at the moment!
Hello
Yes the revamp stopped all messages
Sorry to hear of your nasty side effects, they just keep coming don’t they?
Ive finished chemotherapy but have been left with 2 clots near my PICC line ( line now removed) so have been i jecting myself twice daily with anticoagulants ( they fooking sting), bruised and battered. Moving to tablets today
Had CT scan and been ‘measured’ up and tattooed ready for radiotherapy
I’ll be so happy when this chapter is over
A holiday we should have had back in March but couldn’t because of surgery is at the end of September and it truly cannot come quick enough
Hugs to everyone, we’re still in it and fighting xx
Hi everyone, I have had my last chemo treatment this week! Hoorah! How is everyone else getting on?
When do you feel like you have officially finished chemo and can begin to return to normal routines such as skincare and exercise.
I will be going onto radiotherapy next and am waiting for more details of that. I will also be prescribed hormone therapy. Again I’m waiting to hear which drug.
I do still worry about my “other” breast and cancer coming back but for now I will be so glad to come out of the chemo tunnel and hopefully start to have a bit more energy and feel a bit more normal again. I am looking forward to growing my hair back and hopefully having a glass of wine on my birthday at the end of this month!
I hope everyone is doing well. Hugs to those who need them and cheers to those in a positive place. x
RosehipBandit get yourself a treat on rads drink lots of water it helps with fatigue you might find you try a few creams during rads, some that have been used moo goo, aveno, dr organics aloe and tea tree gel, hopefully you find one that suits you straight away. Just a vest top under clothes during rads so nothing rubs and your team will monitor your skin let us know when you’ve done last one and pick your tune for chemo jukebox and we’ll all have Celebration dance with you Shi xx
@RosehipBandit
Fab news the chemotherapy is over xx
I have my last radiotherapy later today
Still on anticoagulant but tablets now thank god, aprixaben no one can tell me if this is for 3 or 6 months ( started jabs 31July)
Absolutely looking forward to holibobs
When we get back i have zolendronic acid infusion and a smear to look forward to
I’ve also signed up for the moving forward course to try and get my future plans in place…
@RosehipBandit congratulations on finishing chemo and hope you begin to notice an improvement with side effects and general wellness soon xxx
I thought I had posted the following on Monday but can’t seem to find it so hoping it works this time. tbh haven’t been able to get my head around this new look forum site since it changed…not as tech savvy as I thought🤣
Lots been going on including a hospital stay, delay in treatment and problems (again!) with Picc line as well as a change in chemo drugs which brings a whole new lot of side effects to get your head around!!!
Just looking for any thoughts on picc lines/ports etc. I had to have my picc line removed as it was laying to shallow following a chest X-ray and at risk of clots forming; unfortunately there was a two week delay for an appointment to have another fitted. Went to the hospital today and after attempts on two different veins they were unsuccessful as veins very narrow and couldn’t be fitted. They are now considering arranging for a port or Hickman line? to be fitted and wondering if anyone has any experience/advice etc on them! I still have another 3 cycles of EC and immunotherapy to go before surgery and Radiotherapy. Any advice is, as always appreciated.
Hi I am officially no longer a chemotherapy patient! Woo hoo! I have 1 round of Radiotherapy and am off for my CT scan tomorrow, and hormone therapy. I actually finally feel like I can see the light at the end of the tunnel.
Sending love and hugs to everyone still going through chemo. It’s not fun!
@Jo_71 I’m sorry, I’ve no advice about a port or Hickman line. Wishing you all the best for your upcoming treatments.
I’m sorry that you have problems with pic line, I hope it will be resolved, unfortunately I can’t give advice, I’m at the beginning of chemo treatment, only the second session, but I’m glad that I can I’m learning from your experience here on the forum and take everything as encouragement. Thanks for sharing
get yourself a treat 
you might find you try a few creams during rads, some that have been used moo goo, aveno, dr organics aloe and tea tree gel, hopefully you find one that suits you straight away. Just a vest top under clothes during rads so nothing rubs and your team will monitor your skin 
and hope you begin to notice an improvement with side effects and general wellness soon xxx