Breast Cancer Now Forum

Also just wanted to say  its good to remember that the treatments and and outcomes have changed so so much since 30 years ago, even 10 years. They know so much more now.    It has all come on a long way. Its a horrible shock to take in but once treatment starts and you are on the road to recovery you will feel so much better.  x   ... View more

@rbc59  That's such good news, great to hear the chemo does work  - I  have sometimes wondered!  Good luck with the rest of your treatment x    ... View more

@Ruthiella  Hope you feel better soon and you can carry on with the rest of your treatment asap.  We just want to get them done!   I am the same  as you i go to bed really early 8pm is late for me, watch tv, fall asleep before the end of any programme  then awake in the middle of the night. I think if i listen to the radio and snooze at least its resting and i usually have an afternoon snooze, especially when on the injections. It is all a bit much at times isnt it?  Take it easy we are going through a lot, sending best wishes. One of the nurses last week when i was crying after finding a DVT said 'we are going to get you back to you' . Was great to hear and I just keep remembering that!  x ... View more

@RvW  No,  but i was thinking you could somehow make your own by icing some gel packs and putting them inside a regular pair of gloves and socks That is essential what they are anyway!   ... View more

@Sia79  Hello. well i had my first Docetaxol yesterday and got on OK with the Suzipad set. from Amazon . I would say they are worth ordering.  How long is your treatment?  Mine was an hour and they definitely stayed cold for that time. I took a little ice bag in with me with frozen blocks to keep them cold  as had to have my bloods done  first which took an hour.   I had to ditch the socks half way through i was just too cold with all 3 on cold cap, gloves and socks all being iced, it was a lot!  But they are well made and easy to put on and off. Maybe next time i will manage all three. I found the cold cap this time to be the hardest not sure why maybe my hair is thinner all over -  fingers crossed it's all worked!  It is always a bit nerve wracking hoping each time the hair hangs on in there, like the time before, Best of luck x  ... View more

 @emc1017  Oh  sorry to hear about the UTI seems you cant get out of this without at least one thing happening. I was told last week i have a DVT  in my arm, so on blood thinners now,  that was  after thinking i had done pretty well . But that's good to hear no other issues.  fingers crossed i am the same. the cap for Doctaxol is shorter i think i read? do you take it off 20 mins? i've been doing 90 mins so far can't quite believe its only 20 - hope thats right! I also have the ice socks and gloves. maybe it overdoing it but am scared of this neuropathy i keep reading about x ... View more

@emc1017   Ajhh thats great to hear!    I am the same, so far,  feel so grateful and after Ec. I  start my 1st  Docetaxol tomorrow have 4 in total just hoping i can hang onto it .  Did you have Docetaxol?  all the best x ... View more

@andreag  Thank you  for the useful information. I have just unboxed my cooling gloves and socks and filled up my freezer with them for tomorrow  You didnt mention if you were doing that.  I have been reading about neuropathy and chemo and really dont fancy that on top of everything else at the moment  so thought i'd give it a try -  My oncologist said they are discussing amongst themselves about recommending it, she is in favour, but theyre not quite there yet. Seems in USA they often get recommended to use the gloves etc  Anyway tomorrow is going to be a bit hardcore with all the ice im going to have all over me head hands and feet -  very Wim Hoff i just keep thinking this time tomorrow i will be home and in a HOT bath! x  ... View more

 @Katkat Yes!      I saw it on the Paxman website  its a thick blue thing  and actually does help if you pull it down it keeps the contact on the top your head . If you are cold capping and have a few sessions  i really recommend a heated plug in blanket. Also Amazon  I had it anyway when my heating broke down in Jan  and couldnt get a plumber for 10 days, It was fab, and i take it in with me  to the hospital because its gets very cold for over 2 hours  if you are doing EC with an ice block on your head!   ... View more

@Katkat  That made me laugh! Yes i will be cold capping as well as cold gloves and socks i will look like some sort of Yeti! I have a heated blanket over me but by poor body doesn't know what the heck is going on.  I do get some strange looks as i sit with a rubber exercise band  tied around my head to keep the cold cap pushed down. One nurse came to me and said i cant help think you have it too tight.! I maybe a bit difficult with the gloves and socks  but i'm going to give my best shot ;-] x ... View more

HI @Katkat  I saw on another thread about the cooling gloves and  socks. i've ordered the ones someone recommended they are called Suzipad on Amazon she said they stayed cold.  I will be using them on Tuesday so will report back.  Yes the tinnitus is very loud and very annoying! Had it before chemo but its really escalated,  im wondering if Acupuncture may help it. May try that soon.  Just wondering has anyone on here had Docetaxol yet? I start Tuesday and am dreading, it any good stories or am i living in cuckoo land?    ... View more

Hi  @Jolo81  and @EffJay   I also had bad pains lower back and in the groin each time around day 7 and read on here somewhere that taking a claritin tab with the injections helps.  I tried last cycle and Yes it worked for me just . Just thought i would mention it. x ... View more

 Hi, Yes It's very hard this initial bit, waiting not knowing what the path up ahead is going to be. Almost the worst part i would say.   I found looking for 'positive stories'  really helped me. Type in positive stories in the search bar and you will  find a few on here and on other various forums.  Just remember most of the people who are doing well are off this forum and living their lives. My oncologist also said this when i kept asking about success rates.  I found one woman who said she vowed to come back on here once a year to let newcomers know 9 years later she was living a healthy full life, which was great to read. Have a search about, i found it does help. Best of luck, one step at a time. x  ... View more

HI all,  I agree i also found the chemo has affected my eyesight or maybe it was the steroids? Not sure. Well i have had a rubbish day today I went into get my picc line cleaned and flushed and they sent me for a scan.  Found out I have a blood clot in my upper arm, same side a s pcc. I feel it's probably due to the picc.  It feels all a bit scary, tbh but i am on the medication now which is a daily injection for at least 3 months and hopefully it won't become worse.  I Can't believe it 😞 Has anyone else had this? I thought i read someone had on the March group. Another hurdle to navigate.  Hey ho -  I hope you all have a lovely Easter Break. without too many side effects and can enjoy the time off.  Round 5 for me next week!  Best wishes   x ... View more

@Shi That's hilarious! Will be me in a couple of weeks time. Agh, I hate those steroids cant imagine 8, 4 is bad enough!  @Katkat  I was told to leave the conditioner in for one night after cold capping  then i wash it off the following morning. Usually let the shower - tepid - run over my head for a few mins to rinse, then use Simple shampoo.  Then i try not to wash for a t least 5 days or longer. It does seem that is when most comes out when washing and brushing when wet.  BUt after 4 ECs i have  luckily managed to keep most of it.  Good luck, worth doing if you can take the faff of it all.  I also found my head went numb, during the capping  couldnt feel much and thought it wouldnt work. But it has. I went for the small size  and i also press it down there is a good Paxman facebook page with lots of tips on there . x   ... View more

HI @Jolo81  which little box is that?  Sorry maybe you said in an earlier post, think i missed it  I will try to get one, sounds nice! With the Ec. I had it every 2 weeks and this 4th one i have definitely felt it more than the other 3.  But no new symptoms  just more tired, taste weird, fuzzy head and sleep problems. Its getting better as each day passes.  Hopefully the weekend will be OK .  Are you cold capping?  Found the last one bit harder than the other 3.  Think the next drug needs less time which will be better.! x   ... View more

OOH that sounds delicious!  @RvW  I will try, thanks  I am day 6 after number 4 EC and my taste seems to have completely gone, horrible metallic taste.  Slept well last night which is a blessing as most nights have been awake at least a few times, but at last i am beginning to feel a bit more myself today. Less fuzzy headed  Hopefully will have a bit of time feeling ok before the next round  just after Easter which is Docetaxol x 4  Really dreading this one and i see they have given me 8 steroids to take the day before i start!  I am going to be high as a kite on that lot!  Ugh  Just got to hang on in there ladies and get through it -  we can do it . I keep telling myself with an air of disbelief! xx ... View more

 HI @BeGoneSylas  I got a call from the chemo nurse she went through my start date all the side effects. I could ask for a Friday so i had the weekend to take it easy and they were really helpful with that.  I had my tests before which were one or two days before i think. I Had bloods done and an ecg and MRI the day before these  then went into chemo 9 am.  SO that particular week was a bit full on. They seem to take the bloods one day before each chemo and if all ok you carry on with it the next day. With work it seems we all handle the chemo very differently and they cant really predict if we are able to work. I just took it week by week and i am self employed and so far have been able to keep going on a part time basis, probably over did it after round number 3 and felt a bit whacked out, so pacing myself a bit more on this last round i have had.  Good luck its very daunting to begin but you will get into a routine. x ... View more

Yes i have done 4 EC now and lucky i  have kept most of it. My hair is also very fine shoulder length and i read the paxman website over and over!   Seemed to be the worst shed after number 2 then its evened out. Have lost some, about 20% i would say. I dont wash it very often only brush it once or twice a day and when cold capping i use one hand to press  onto the top to push it down. Also with brushing just brush half way down holding the top of my head. I use  the simple conditioner just before cold capping.  Leave it on and wash it the following  day I would say one of the main things is making sure the cap is very tight,  with contact on the top of the head.  i use an exercise band over the top and pull it down on my head, i saw this on the facebook page. Hopefully  it will work for you. I still have the next Docetaxol up ahead so who knows, but so far its been with the palava of it all i would say, Good luck xx ... View more

 @andreag  Good luck tomorrow Andrea,  Just keep think another one down, and off the list. Well done with the hair too, making that decision  I found it very stressful not knowing what would happen after each cycle - they wern't too positive at the hospital  and it all may still go!   Let us know how you get on, all the best for round 2.xx  ... View more