Just read your post, I had a lumpectomy in September hoping to start weekly Taxol chemotherapy with Herceptin every 21 days soon, to be followed by radiotherapy. I have a better idea what to expect now thank you for posting. My oncologist said I will lose my hair, that scares me, reading your post, made me feel I'm not on my own 🙂.
Where did you purchase the cold cap. I will be starting my Taxol & Herceptin next week. I have lost most of my hair in my AC treatment. Then did my surgery in March 2020. In between my hair started to go little. I want to save these hair before my taxol treatment. Please help.
I see by your post you are from North East do you go to RVI or Freeman, I have had my surgery waiting to see oncologist about treatment scared stiff of the thought of having Chemo. I know I have to have 20 sessions of Radiotherapy
I hope things go well for you
love & hugs
Thank you for your reply, I've found this to be a lonely disease, so when I get to hear that other ladies have similar experiences it makes it somewhat easier.
I'm lying in bed and everything seems achy this morning, I've spoken to my nurses yesterday and they've said that they will reduce the final 3 doses of the paclitaxel. I found the treatment "doable" at the start but 5 months of chemotherapy have started to catch up with me and I feel like I've aged. I have a toddler and I'm struggling to be the best mum I can be at the moment.
I'm exactly like you, always cold and shivery and usually I'm quite a hot person, not feeling the cold. The body aches sound exactly the same as mine and although I wouldn't wish this on my worst enemy, it's reassuring to know that these pains and sensations are normal so I really appreciate your post as my mind has been conjuring many worst case scenarios, that really aren't helping! I had lots of scans, ultrasounds etc at the very start and I was told it was a "curable" early cancer but I have one lymph node that definitely had cancer cells so I feel very scared that it's spreading everywhere. I hope I don't sound crazy!
I wish it was a sprint too! I'm not one for endurance, I prefer things out of the way!
Thanks again for your post
Hi Luna Muna,
You are so not alone, and seems I am not as well. I have completed 11 of my weekly treatments with Taxol (interspersing herceptin at 21 day intervals) The symptoms have been "tolerable", and similar for me, although I now do not like the word tolerable. The last 2 treatments have been more difficult, I am having the same increased body aches, and the side and breast where the cancer was feels tender and achy and my shoulder is inflamed.
Also throughout the treatment, I feel cold most of the time, with the occasional hot flash....energy level mainly low, and i just start to feel slightly better and its time for the next round.
I knew this was a marathon and it is hard, I prefer sprinting
Hope this post helps anyone going through this lifesaving and difficult treatment
Starting weekly Paclitaxel Friday nine sessions so that is good to hear . Also kept hair thanks to cold cap so hopeful it will last to the end of this wretched business . My main side effect on FEC was fatigue and bit of nausea / heightened sense of smell so I think I have been lucky
I thought id post on here as I am also having weekly paclitaxel, herceptin and perjeta (herceptin and perjeta every 3 weeks) I only have 3 more to go! Already had EC chemotherapy but at 3 weekly intervals. I found the EC so hard, it would wipe me out completely for 10 days then is pick up just in time for the next one! The weekly chemotherapy is definitely easier, I am not sick all the time but I do have constant diaorrhea and after 12 sessions, feel like the side effects are increasing. I have so many aches and pains, especially in my chest, back and the side of the affected breast. I'm so scared that the cancer is spreading, even though I've responded to the EC completely and all staging scans were clear, I just can't shake that niggling doubt.
I have used the cold cap 15 times and still have most of my hair, it's thinned a tiny bit, but all over so you can't tell. My hairdresser told me to soak my hair and use tonnes of conditioner and it's definitely worked. I use one from Amazon, by green pharmacy for hair loss, it's really kept the condition of my hair too. I decided not to get it cut short prior to treatment and it's still very long and shiny, for which I'm glad!
I'd love to hear about other people's experiences of this treatment, just don't want to feel isolated like I do at the moment.
Big hugs to everyone
I finished my Taxol chemotherapy on 18 December but from the beginning of December I started to feel very depressed. I went on to mild antidepressants at a low dose but in hindsight I think I should have taken my GP's offer to increase the dose because it didn't shift for months. I went through my 15 sessions of radiotherapy in a blur. I think I have a predisposition for depression as I've had it once before so I'm sure others aren't affected like me and Taxol does have the advantage of being very effective with virtually no side affects. I certainly didn't have any nausea, headaches or pain. I lost my hair but it started to come back in January and has flourished ever since. Anyway, now, 3 months after radiotherapy I'm just on my three weekly Herceptin injection which is absolutely fine. Again, I don't have any side affects and after my depression lifted in March, life has returned to normality and I feel really well.
Get plenty of rest, eat well and have lots of contact with family and friends. I kept mine at arms length because I was paranoid about infections and I think that contributed to my low mood. There is light at the end of the tunnel and your treatments will soon be over.
This is the same that is happening to me.
It has been a while since you posted this..how are you doing by now?
Hello Bonnie 52.
Thank you so much for taking the time to reply to my post. It's much apprciated- it's so nice to hear from someone in the same position as me; I was feeling isolated. I didn't think I'd hear from anyone so I haven't been on the site, I just wanted to concentrate on my chemotherapy which coincidentally is 12 wk Taxol and 3wkly Herceptin! The dates mentioned in your post make me think you must be coming to the end of your Taxol. Is that right? I hope everything went well. If everything goes according to plan for me, I should finish in mid December but I'm not taking anything for granted.
I've been managing ok up to now. I hope it continues. I don't like all this medication, I wouldn't even take 2 paracetamol prior to this, and every week I think I'll jack it in but I hope I can persevere.
I still can't understand how this happened. I haven't accepted it and find it very difficult to say "the word" . I just want everything to get back to normal but I expect everyone feels like that.
It'd be great if you could update me with how things are with you.
Wishing you all the very best,
Mercier100 - I am receiving Paclitaxol and Herceptin having had the same diagnosis and surgery as you- all through a routine mammagram. I understand completely how you feel about the anxiety - I couldn't believe that I felt so well and then got this diagnosis. After the lumpectomy, I did query having to have the 'strong chemo' that I was told I would need. I explained my fears (nicely) and when the consultant oncologist saw me, I was prescribed weekly Paclitaxol chemo for 12 weeks with Herceptin on a 3 weekly basis for 12 months. Radiotherapy may happen as well after the chemo is finished.
I am 3 weeks into the chemo regime and although it is early days, the side effects so far have not been as bad as I feared. The whole business is gruelling but bearable at the moment. I live in the north east of England so my regime is definitely used in the NHS in my part of the world!
Best of luck with you - hope things go well for you
I'm in a bit of a daze since my diagnosis at the end of July. It came up on a routine mammogram. I didn't have a clue. I didn't have a lump or any symptoms. It wasn't visible to the naked eye nor could you feel it.
2 months ago, I didn't have a care in the world; fit and healthy and now, it's frequent hospital appointments and anxiety. The anxiety is the worst aspect of this. I feel well, back to normal, and had a really great day out yesterday when for some reason the anxiety had abated, probably because I wasn't near a hospital, but I have bad days too. Very up and down. If it was just a matter of having radiotherapy, I'm sure the anxiety would disappear.
My lumpectomy operation went very well; the offending item was 4mm and all the nodes were clear. The fly in the ointment was HER2 positive. I'm lined up to start Fec -T chemotherapy at the end of the month with Herceptin coming on board during the 18 wk treatment and lasting 12mths but I read about an abbreviated course of chemotherapy in the US for my type of situation (12wks Pacataxil and 12mths Herceptin) and your thread indicates this type of treatment is already being used in the UK. Could you give me an indication of which part of the UK is using it e.g. Midlands, South East England, Scotland, Wales etc?
Hi....haven't posted before but read a lot of the threads over the last few months....just thought I would share my experience as it might answer some of questions people ask. I had breast cancer 12 year ago and had a lumpectomy chemo and radiotherapy...got through that OK and after 12 year thought I had it cracked...had no scares or anything until earlier this year when I got diagnosed again, in the same side, scans showed it wasn't anywhere else but had to have mastectomy, which was very straightforward and had reconstruction at same time. After this was told I would have herceptin for a year and 12 weekly paclitaxol....which is where I hope I can give some information on some of things I wanted to know at the time. My chemo was stopped after 5 treatments due to neuropathy in my feet (I was more susceptible to neuropathy because I had paclitaxol the last time) but up until then I had very few side effects apart from aches and pains...mostly in my legs, I was able to go back to work just after my first treatment and haven't needed time off since.
Scalp cooling...this worked for me 12 year ago so I chose to try it this time...it is uncomfortable for the first 10mins but then you really don't feel it, so if you can it's worth persevering...all the info said treat your hair gently so I changed my shampoo to a ph balanced one (Herbal Essence detox range) and only washed my hair twice a week, however I still used the hairdryer on low setting and straighteners also on low....I also dyed my hair using the veg based hair dyes available from Holland and Barret....I also used a satin pillowcase. By hair started to shed about 3 weeks in but it wasn't a massive amount, it continued until about 3 weeks after the last chemo but still no one would notice, and I have quite fine hair to start with. After reading on here...I also bought some keratin hair fibres (only a tenner off amazon) they are great at covering the one small patch where my hair is slightly thinner.
I used cheap vitamin e cream for my skin, and bio oil morning and night for my scars which has worked wonders. Anyone who doesn't know me has no idea I have had cancer.....I know I have been very lucky, and Not everybody has it as straightforward as this but just wanted to share my experience
Hi Sam, not rabbiting on at all. It really can feel very surreal at times, especially when you are in limbo waiting for appointments and treatments. I'm through my chemo and going into rads, and all I can say is it's doable, but it was not a walk in the park. Everyone is different and responds differently, so you could just breeze through - hope you do. Why not join the monthly thread when you have your dates? You will have buddies to go through treatment. Best of luck. Stay strong. X
Well, I have been done with Taxol now for 3 months....I've lost probably 60 percent of my hair. It just continued to shed for weeks after finishing! I sort of wish now I had shaved it just to get a fresh start because its very thin and wispy---right now I have tape in extensions which thicken it up a little but I'm still not happy with the way it looks. The existing hair is growing but still shedding more than I think it should....not sure what I am going to do with it. I was equipped for baldness but not ready for this weird wispy in between state....
I just finished my 12th and final infusion of Taxol/Herceptin last week. I found it to be very tolerable---I didn't experience any hair loss at all until the tenth infusion, when I started shedding more than normal---this week I would say I am shedding heavily but I predict (hope) I will keep about 80 percent of my hair. My eyebrows have thinned a bit, still have my eyelashes and all body hair. At about week 8 I started to notice a little numbness in my left foot which comes and goes. My blood counts all dipped a little below normal but I've been able to work and play tennis and feel pretty good. (I have stage 1b triple postive IDC) Next up: radiation and Tamoxifen! And will continue with Herceptin every three weeks for a year.
I have had 2 doses of Taxol with Herceptin and Perjeta. I had one dose on a Wednesday, the next week on Wednesday, and this week they are not giving me any. I will be getting it 2 weeks on, and one week off. When will my hair start to fall out?
i just finised my 7th taxol yesterday compared to fec its not too bad, a bit fatigue, hair is growing back, i guess its gettting a bit tiring and accumulative, the one thing taxol does it makes you a wee bit depressed or emotional, i am wondering if anyone else has experienced, feel a bit spaced out...
anyone has managed to find out more on hot flushes, the chemo nurse seems to feel that antidepressants help but i am not sure i want to down that route there..
Well I had my first of 12 weekly Taxol on thursday and have to say that so far it's been fine. I felt rough on the afternoon after having chemo - came home from hosp and went straight to bed - but that was due to side effects from the infusion of Piriton given before the chemo, made me feel really dizzy and spaced out. Other than that I've been fine, no nausea and just a touch of backache. I was well enough to take the boys to the zoo yesterday and go out for a meal with hubby tonight.
I am getting some hot flushes at night but not finding them too much of a problem as yet, still might invest in that magnet though!
Here's hoping things continue as well for the next 11 weeks!
I will be moving on to 12 weeks of Taxol in March. My 4th FEC to come. Glad to hear the side effects weren't too bad for you. Seems such a long haul.
I'm 32 and I kept my periods during fec. So far, I'm still having it with taxol & herceptin. 😄
get ready to party as I also know of another lady whose hair grew back during taxol!!
Take care everyone and enjoy the rest of the weekend!
I lost all my hair with FEC 😞 well just had like a thin film left i kinda left it thought keep me warm...so doesnt work LOL, seriously hair grew back during tax.. i am gonna party if it does LOL...
thanks for the remedies for the hot flush, I am going to get some this weekend and keep it, its suprising i kept my periods during fec..but i guess with herceptin n tax maybe its time for them to go...
damn at 34 u never thought u'd worry about menopause now LOL..
good luck everyone, thanks so much now i can stop freaking out at the poor familia..
have a good weekend x
I had Taxol and Herceptin 2 years ago and found it easier than 3 weekly chemotherapy. The good thing was I only had 1 day a week when I wasn't feeling good and had a couple of good day EVERY WEEK!. Not sure if you've lost your hair but I used the cold cap and it worked. Hope it's going to be ok for you.
Best wishes, Gemini.
Thanks for your posts Sylvia, it's good to hear from someone who's having Taxol.
I've added the magnet to my Boots.com favourites so if I develop hot flushes I can give it a go! Not sure how hubby will feel about me sleeping with a magnet in my knickers but what's one more indignity eh??
I forgot to mention this in my previous post but my hair has started to grow back so that's something to look forward to if you didn't use the cold cap!! 😄
I just called my chemo nurse to ask her about hot flush remedies and she mentioned that some of her chemo patients highly recommand using the ladycare magnet. Guess this would be something that we can consider buying.
thank that has given me some confidence, I will for sure share any remedies i hear that may just ease this for us, I am going to be the same cycle as u with herceptin every 3 weeks,
but i am told to be careful with hot flush remedies that it doesnt contain anythin that could effect the levels of oestrogen in the body.
good thanks for sharing hugs xxoox
I've had 4 cycles of FEC and am in the midst of my 12 cycles of weekly Taxol. I'm having herception every 3 weeks as well. Just had my 5th cycle of Taxol on tues.
You'll be glad to know that Taxol is so much better than FEC!! Had no nausea whatsoever during my first dose of Taxol and Herception. Had a wee bit nausea on the 1st night of my 2nd and 3rd cycle of Taxol but i didn't have to take any anti sickness pills at all.
It looks like i'll get that bit of nausea only if i had Taxol without Herceptin administered on the same day.
There's also some achiness and soreness with Taxol but it feels a little worse if I had Herceptin together with Taxol.
My main problem right now is that I'm getting hot flushes about 3-4 times at night so I haven't been sleeping too well. This started after the 4th cycle of Taxol. Will have to ask my ONC for some remedies when i see him.
In the meantime, please let me know if anyone knows of any remedies?
Oh yes, i had injections to increase my white blood count during FEC but with Taxol, there's no need for that at all.
Thanks and take care!
I have heard of LifeMel but not sure it's for me - I bought some Manuka honey when I first started FEC but keep forgetting to take it. Luckily my blood counts have been normal throughout so far. Maybe when I'm not having the Neulasta I'll be more motivated to remember the honey so I'll give it another go when I start the Taxol!
I will for sure let you know the chemo nurse seems to seriously think that once u have done with FEC and coped with it, Taxol seems more manageable, I had the injections too, have you heard of LifeMel honey, apparently its supposed to help with the white blood cells.
good luck, its a tough ride but we will ok hugs xoxo
Can't help with any answers to your questions but I just wanted to let you know that I've got one more FEC to go (in 2 weeks time) then I'll also be moving to weekly Taxol and have the same worries as you about having some 'normal' time between treatments when they are so frequent.
I'll be interested to see any responses to this thread and hear how you get on. I don't see many people mentioning weekly Taxol on here, 3 weekly Taxotere seems much more common.
You may be interested to know that I'm having chemo to shrink my tumour before surgery and the FEC is working fabulously (gone from 15cm to 4cm so far after 3xFEC), my onc said he could continue with more FEC instead of the Taxol but that patients who switch usually do just as well on Taxol and often even better so he recommended changing. I found that good to know. He also said that there has been a very good study that suggests that weekly Taxol may offer an improvement in long term prognosis over 3 weekly Taxol or Taxotere.
I've been having Neulasta injections to increase my WBC count after FEC but won't be able to have these with the Taxol as the dose interval is too short but he assures me that weekly Taxol has a much less drastic effect on the bone marrow.
All sounds good to me, still concerned about SE's but I think my concern is just more of that anxiety about another step into the unknown, hopefully once we're into it again things will get easier.
Please let me know how you get on, perhaps we can hold each other's hand through this one!
Just finished my 4 FEC's and I am now moving to the 12 weekly cycles of taxol & hercep, anyone been on a similar regime, how are the side effects, though FEC was tough but atleast after the 10 days we could carry on with life. I am slightly worried about the Taxol & Herceptin.
take care hugs malaikah x