Thanks Kirsty, just got back home after an unexecpted stay in hospital since monday with an injection around the biopsy scar - which i had done back in May!! all very strange and they don't understand why this has happened - it was sooooo painful, they tried to drain the infection but couldn't get it all out. On antibiotics to try and clear it, other wise they will have to go back in and surgically drain it:-/ not looking foward to that prospect! Other downside is it will affect my chemo (2nd Taxotere) next week as it will have be put back for a while!!!
Hair has started to fall out now and even though you expect it and KNOW it's going to happen it's still so emotional - i was in hospital when is happened as I tried a shower to freshen up and it came out in clumps:-( So all in all not the best week - sorry to unload, rant over x
On the plus side my family have been great and really bonded (my husband can come across as a bit task master and go on a bit) and my daughter is feeing better about my hair - i think maybe because i put on a brave face although she is still going away for a couple of weeks but i am pleased she will be distracted x
Hope you're all managing with whatever this has thrown at you in mind and body x
Big hugs x
Thanks for the support that's very kind, I'm back in work the last two weeks which is great, bit of normality and now I know what to expect from the T now it feels less stressful.
Yes it must be a side effect, all these weird things we have to deal with each time, in conjunciton with our own feelings and everyoine elses. Yes I think the hairloss is the most emotional part of the treatement I found it hard too, lots of tears. I gradually went shorter and shorter, cried at the hairdressers each time and they were great about it. Then got it shaved once it started to fall out rapidly as the weight from it made my head very itchy and sore. I had a bloody good cry but was relieved to not see if coming out on the pillow etc. It is difficult for chidlren to see their parents poorly they're not used to it, we are normally their protectors. I wear hard scarves and little beanies that I bought on amazon, I would suggest getting a few in colours you like I didn't prepare myself enough for that bit at first but have a few now, they also keep your head warm on cooler days. Also practice with tying scarves if you haven't already.
My son is 8 and initially didn't want his friends to see me without a scarf etc, now he doesn't care at all and is very sweet and strokes my head now as there is some fine fluffy hair there. 🙂
Is there someone that you can get to be with you to help with the hairloss and maybe take you if you need to have it cut?
Best of luck this weekend and big hugs.
Thanks for posting advise on what has worked for you with side effect to Tax - all so helpful x
Kirsty - sorry to hear you struggled more with anxiety, it's hard enough so I hope you're feeling better. Also I have too have woken with itchy, red pimples over my chest/neck, like spots but more puffy!!!! so i am thinking it must be a side effect!
Dreading next week when I hit day12-14 to see how much hair I lose - my daugher (16) is dreading it more than me becuase she is worried by my reaction and has even tried to arrange going away to her grandparents in Devon!! Not sure how that makes me feel, I don't want to rub her face in it and I thought i had been dealing with everything really well so far, with a sense of humour- considering and totally expect to lose my hair - it's just not knowing! i have promised I will wear headscarves etc and hope to pick up a wig soon:-/
Hope you all manage a good day without too much heartburn and other horrible feelings x
Big hugs x
Thanks for the all the information about the symptoms, it's reassuring I am one week on from my frist T having completed three FEC which I was very affected by. T has been very different, symptoms didn't kick-in for about three days then had the muscles aches, headaches etc, Nurse prescribed some sleeping tablets as I was having anxiety and insomnia, they helped massively.
The one symptom that I can't see anyone else having is that about a week after chemo I get inflamed cheeks and then I break-out in small pimples across the cheeks almost like an acne, has anyone else had that symptom???
I have also found that this treament has left me much more fatigued or that could be the accumulation of having now had 4 treatments.
Best of luck to everyone.
It's so inspiring reading all your posts - all so similar, yet different emotinally and physically. I find it so reassuring to know we are not alone x
I just wondered if anyone has been treated with Taxotere for the 6 courses as I reacted to the FEC so they won't risk it agian - or so they say for now anyway. i can't seem to find anyone who has done it this way and curioius of the side effects etc..especially if the cold cap made any difference.
Big hugs Txx
I've just completed three doses of FEC last Wednesday and in two weeks' time, move on to 3 doses of doxetaxol, so I was browsing the forum for info.
I didn't bother with the cold cap and shaved my hair off when it started shedding in January. I have a lovely wig and some nice hats and bandanas so don't mind being bald but don't ever go out with a bald head. It has to be covered with something! My eyelashes are thin now, but brows are good. Rest of body is hit and miss. I kind of wish it had all just come out so I was smooth!
I've bought some dark nail varnish and intend to use it. I don't want my nails to drop off if I can help it.
Is it really cold having the doxetaxol? I have a PICC so it will feed straight round to my chest...I always find the chemo ward so hot. Do I need to layer up? I hadn't considered this.
I haven't suffered any sickness with the FEC so hoping to stay lucky, but ready for the worst. My worst side effects so far have all been in the mouth, but every time anything has caused me pain or discomfort, my GP has been very quick to prescribe something.
Roll on April 2nd - the date of my final chemo session!
Hi jo I had chemo 2 years ago had Epi . Cmf have just had 6 tax last year it is hard doing it again!!and I think it is worse in some ways as you know a bit more!! But I got through it and you will too. Good luck xxxxx
I have completed 3 x FEC and have 3 x T to go. I have been using the cold cap and have lost about three quarters of my hair but thankfully quite evenly which means I can "get away with it" amongst friends and family. It has made a massive difference to me to keep some hair as psychologically, that was always the worst part for me.
I am going to continue with the cold cap during the T part of the treatment as the nurses have said it will help when my own hair starts to regrow.
Best of luck 🙂
I too am sorry that you're returning to chemo after a good period of remission. Whatever the side effects I hope it helps you.
I had 4x FEC and 4 x Tax. The FEC was easier, I didn't get sickness and felt unwell for up to 4 days and then gradually picked up. Hair loss was definitely down to FEC and my oncologist doesn't agree with cold cap as he believes it dilutes the treatment so it wasn't an option for me. Also I believe the hair loss, or eyelashes and brows are individual just like the various side effects. Some will lose all and others get to keep their lashes and brows.
For me TAX was not so good. The aches and muscle weakness kicked in first together with horrible taste - everything tasted salty/sour and after each treatment I lost up to 12 pounds which went back on once I could cope with food again. I found the bone and muscle pain so debilitating that my oncologist reduced the dose for the last 2 treatments but others around me didn't have anywhere near the level of pain I was experiencing. So you can read everyone's posts and have a very different experience. Like Lols my last treatment at the end of November gave me peripheral neuropathy which I find most frustrating but a lady I met at the support group last night told me hers is reducing and feeling more comfortable and she finished TAX at the beginning of October. So there is hope.
The only thing I'm unsure of is how long the TAX stays in the system given I still have joint and muscle aches or do I blame the Anastrazole which I started on Boxing Day which also produces joint pain?
Dark nail polish is supposed to help but I started using it too late. I've lost a toe nail and my other nails are ridged and discoloured but they are one of my strong features in 'normal' life so perhaps they'll hold out.
Hopefully you will sail through with little or no s/e's - I truly hope so.
I really hope you cope well.
have read all the recent posts on FEC and Tax and it does help to get a kind of idea about what lies in store.
I had FEC 4 years ago and didn't use the cold cap then. I lost all of my hair but never my eyelashes (i didn't wear mascara to save them as much as possible). I now have to have chemo again - most likely FEC and now T. Like everyone else , I've been told that T is much harder on the body in terms of side effects. someone has told me about hand and feet coolers. Does anyone know about these and if they are effective? I will get some broad beans in just in case!
This time round I think i will try the cold cap as I just can't face losing all my hair once again. It sounds as if it is only partially successful but prehaps enough to warrant the pain of having it on during treatment. I hate the cold so I may not be able to stand it but want to give it a chance. I know it is only hair but it is a very visible symbol of cancer and it can get to you when you are very debilitated by all the other effects. I know I have to have this treatment as I've been told that my cancer is now 'aggressive' but I still feel very apprehensive about going through it all again.
Any tips and do's and don'ts would be gratefully received. I am also on FB (Jo Williams) if anyone wants to correspond to help pass the time. I did this last time with a lady in Cornwall (i'm in Leicester) and it was helpful.
many thanks and good luck for your recovery. This is only a chapter of our lives, not the whole book.
Many thanks for your helpful post - it's really reassuring. I think it's just the getting started and trying to be in control that is important!
Lucy - thank you so much - that's helpful.
Dear FJ & Jules
I asked my ladies about the nails and the majority had said that they had not done anything specific apart from the dak nail varnish and keeping their hands well moisturised including cuticle oil. One lady said that in France they have cold gloves as well as cold cap and a french lady she sees puts her hands in bags of frozen broad beans, aparently peas defrost too quickly.
It may be that the nail issues come later on but I don't think I could face cold hands as well as a cold head!
I had my 2nd tax on friday and it is very different to fec, I was really lucky on fec as I did not have any nausea and only really suffered with indigestion and constipation as well as fatigue. I think I have been lucky on Tax it appears to hit some ladies hard and their doses have been reduced but some others have been ok.
The main symptoms have been:
Cycle 1 thought I was constipated on day 4 so took senna, only to find I then had diahorea on day 5-7, this cycle I have not taken any senna which on fec I took from day 1 for about 5 days, have not had any problems and wondering if the diahorea will hit soon (am day 6 today).
Mouth feels awful, like my tongue is double its normal size and no taste buds, I have used oraldene mouthwash everyday since starting chemo and I have been lucky not to have any mouth ulcers, I did have a sore tongue last cycle but it cleared up ok. I noted that thrush was a big problem so keep an eye on that and get some meds if needed.
Bit achy, last cycle I had what felt like swolen glands in my neck and this has come on again today but to be honest it is fine and a couple of paracetamols or ibruprofen seems to be ok. I did worry before the first tax about the aches and feeling like I had been hit by a bus over xmas (my chemo was 20th dec) so my onc prescribed me with Codine but I have not needed it, you might want to get something like that too just in case.
I think it is easy to worry about aches and pains and what they might be, chemo is hard on our bodies and sometimes I think we think too much about the side effects but I wanted to tell you about what I have had so you have all the facts.
I have been cold capping and have lost quite a lot of hair on the top of my head, although I have decided to persevere as I am able to cover up the bald patch with a scarf. I felt really low about the hair loss as although I knew the cold cap might not work I had hoped for better results. I got a lot of suppport from the caring hair studio where they kept reminding me that if you have some hair left regrowth is quicker, once the hair starts growing in between what is left it thickens out quickly. I decided to persevere and I am really glad I did as I would definately be bald by now. I am now considering getting a wig for my return to work just to look a bit more normal as I am finding my hair is a constant mess, it is going really grey as I am unable to dye it and can't style it, it has always been unruly.
I was told that the Tax would not be as harsh on my hair but that I needed to use the cold cap or would loose it all with Tax. Some reports are that hair often regrows during tax. One of the nurses said that as I had kept my eye brows and lashes on fec they would stay. However on day 6 of 2nd tax today I have found that I have lost quite a bit more hair over the last week from my head (although I still have enough) and my eyelashes have been thinning as have my eye brows. My eyebrows have always been quite bushy and dark and although it is noticable to me I am sure they would still be considered as there! As my last chemo is on 31st Jan they should start growing back mid to late feb so I am not so worried about them going now as I would have been at the start of chemo. I really don't think there is much you can do about it I am afraid.
Hope this helps and good luck
Hello - I am new to the Forum and have had 2 x FEC (one to go). I am due to start 3 x Taxotere in February once the final FEC is done.
Three quarters of my hair has gone ( I did use the cold cap for the first two FEC) but no loss of eyelashes so far. Could anyone give me some suggestions with regards eyelash loss - is this likely to happen more on the Taxotere than the FEC?
Also - is there anything to help slow down eyelash loss or do I just need to consider false ones?
Many thanks - your posts are so inspiring and helpful in getting through treatments.
I am due to start Taxotere this week after finishing 3 rounds of Fec.
Was wondering if anyone has any tips on how to try and minimise nail problems?
Saw a lady the other day with issues with her nails, looked really sore and were lifting badly.
I have read that dark nail polish stops the light getting to the cuticles but my nurse said that was just to hide the dark lines that appear.
Also has anyone tried putting their hands in iced water during treatment, this is suggested in the Taxotere leaflet.
Any suggestions greatly received!
Hi Julie, I would say if you can comfortably put up with cold cap it might be worth it. My experience however was that it also made me feel sick (smell of cap and conditioner mainly) when on FEC , and it prologed the stay time at the clinic so I figured I'd rather loose some hair than go through that each week. I don't know if anyone has not lost any hair whilst using cold cap on docatexel (T) - there may be some other old threads in the forum. I think it's a case of weighing up how much you think hair loss is of an issue compared to using cold cap and how it makes you feel.
Best of luck with the rest of your treatment:)
Well done for getting through your 3 Fecs and onto Taxol.. For those of you who have managed to hang on to your hair, i would say stick with the Cold Cap. It is generally the Fec that results in the most hair loss. Hair on my head started to grow back during Taxol (only fine / fluffy) but all other hair came out gradually. Taxol does seem to cause the bone / joint pain but as Whiskers says lots of fluids and take pain killers before you go as well as all the anti sickness they prescribe.
I already had Semi permanent Make up eyebrows and used stick on eyelashes (only for special occasions when i was up to it) which kept some sense of normality. No leg waxing for 6 months (silver lining to the cloud). Other areas lacking hair took a bit of getting used.
After all my treatment i attended a Look Good Feel Better morning and in reality i could have done with that mid Chemo so if you haven't been girls i would highly recommend it. It is a Morning or Afternoon with lovely ladies, Beautician advising on colour and drawing in eyebrows etc and a lovely goody bag to experiment with (lovely cleanser / toner / make up and perfume) which we got to bring home.
Hope the rest of your treatments go well and Take Care. Gilly x
Hi Julie I am on day 3 of T after having 3 Fec. I have used the cold cap from day one and noticed alot of hairloss round Fec 2 but it has slowed down considerably. I would say I have lost about 60% but am determined to carry on as 40% left is better than 0 for me. I was also told that hairloss is alot less on T and also you do not have to wear it as long as you do on the Fec which makes a big difference. Bit of a backwards bonus but the coldcap for me actually took my mind off the T when it was going through as it was so bloody cold compared to last time and did make me feel sick. I would dose up on painkillers first hand and have plenty warm drinks on hand.
Good luck with the T and let us know how yo6 get on. So far for me not to bad 😄