Hi all, As some of you may have seen from my past post regarding the return of the cancer, or should I correctly say, it was never all taken at that time even though they said they had got it all with clear margins, still so angry .I'm now staring down the barrel of chemo afterwards, as part of my treatment from this round of surgeries,I wasn't required to under go chemo 1st time, so I dodged that, this time its not looking like I will have that same luxury,My questions are for all of you who have had to face this, how long dose it take for you to loose your hair, I'm just trying to do the best to mentally prepare myself,I fully understand each one of us are completely different, and each chemo session plan will be different form the next,its more of a general idea, like dose it start to come away after your 1st session, or do you get through all your sessions and then you see the hair starting to come away,I do have a great breast care nurse, who is lovely, we are just back at the early stages now biopsy's done, MRI done, PET CT scan booked in for this week, they have now seen another lump in the breast that could need another biopsy prior to theater, the list keeps going on this.But I have been advised by both the surgeon and y breast care nurse, chemo is a high possibilityIs there any advice you can share on how to prepare both physically and mentally for this treatment.I have the worlds worse veins, so I've ben told about a pick line, that sounds fun, not! anything you wish to share would be very helpful, so I can try my best to mentally prepare for this stage Thank you all :)

Bad luck but take heart, some of us found chemo not as bad as feared. But yes, the hair did go. Most people report about a fortnight after the first infusion - mine went bang on schedule. Just a lot of hairs, no lumps or hanks, but I had my hairdresser at the ready and she cut my hair very short that morning (number 3 clippers) which saved a lot of mess. Some people shave their head but I felt that was a bit sudden! The rest followed inexorably - I wore a cotton night cap (your scalp may feel quite sensitive a week or so before hair starts to fall) and could just shake it all out in the bathroom sink each morning! I only had one useable arm for needles ( lymphoedema after surgery, a whole other story) and I managed through 6 months of chemo without a line or port, but many find a vein saver preferable.You might like to think about how you treat being bald - the Sinead approach (my skull just wasn’t such a good shape!), scarves and hats, or a wig. Many of us end up with a combination of all. I worked through chemo (as I said, not as bad as I feared) and a synthetic wig was great. No-one knew unless I told them. Everyone has their own preferences. Very best wishes.

My hair started coming out on day 19 but my scalp was quite sore prior to that. As Afraser says, a cap worn at night eases that. I cut my hair short prior to it falling out (both times) and this also reduces the pain. I have a port for my infusions. My first port was in my chest which they removed. This time around it is in my arm. Not sure what the choices are with pic lines. My cancer returned in my lymph nodes which I found strange as the surgeon told me he did a clearance but the doctor doing my biopsy the second time around insisted most of my nodes were intact and that I must be mistaken (even though my paperwork states anxillery clearance) I was pretty annoyed too as the worst area is one that I have been complaining about pain in since the first diagnosis. I have moved on from this annoyance as it isn’t worth spending my energy on. It sounds as though they caught yours before it spread so whilst chemo is yuck, it is also doable. Just take one day at a time and don’t worry about what might happen as many breeze through it. Also, don’t be shy about asking for help.Any questions just whack them up here and someone will be able to help.Sending big hugs

I am sorry to hear about your experience with treatment and that you are now looking at chemo. I went through two months of A/C and 'The Red Devil' (doxorubicin) fortnightly treatment. It was rough but I had been warned about the side effects and ultimately the treatment shrunk my tumour. I am now doing three months of weekly Taxol, with far less nausea than A/C. As everyone here says, chemo is a personal experience. I am not a veiny person but the nurses have had no trouble finding veins, using the ultrasound machine in the clinic. I did not use a cold cap because I thought it might be pointless with The Red Devil and because I was often quite cold. I had lovely mahogany hair. My hair started falling out between my second and third sessions. The third chemo just fried my hair and it just looked awful. I got my husband to do a buzz cut which looked stupid because it was patchy. I went the full Sinead and have been for a few weeks so it grows back evenly. Preparation was partly practical and partly emotional. I made the mistake of not ordering caps or headwear beforehand and the postage took two weeks! I had to borrow an uncomfortable pink cap from the clinic before mine turned up. I ordered a pretty tie-dyed comfort cap from Elly-K which I cover with scarves. I have a bamboo purple cap from the Hat Show that I wear at night. I found it important to be comfortable, so I wanted bamboo or cotton fabrics, with no big seams. I felt pretty fabrics or colours I love would cheer me up. My cap fits under my sun hat, which makes me happy. Before I shaved my head, I tried to psych myself by watching the documentary on SBS about Sinead O'Connor about a month ago :'( The week she passed away I had a good cry for her and for my hair. I rang my hairdresser to explain why I had not been back and they were so lovely. My hair was my identity and it took a few weeks to acknowledge the loss. As it gets towards the warmer months and once I get a bit of fuzz on top I might not wear the caps so much, in honour of Sinead <3

During chemo I kept a log as with chemo brain fog, often I would forget half of what side effects I had. My oncologist was very appreciative of it and we tailored the chemo and adjunctive medicines according to how my body was doing with it all.

My hair fell out within 2 weeks of first chemo...i wish i had a port put in as 6 years later and my veins are shite!! Drink lots of water before and after each chemo...i would take a walk after each session and when i still could...i found the red devil kicked in on day 3 and felt nauseous for about 10 days...docitaxel kicked in around the day 3 mark too and I felt like road kill for about 5-7 days...i couldn't taste anything...I guess its better than the alternative...let your oncology team know of any side affects or pain...take care of you x

chemo question please? | Online Network

Afraser
Member
2 years ago
Bad luck but take heart, some of us found chemo not as bad as feared. But yes, the hair did go. Most people report about a fortnight after the first infusion - mine went bang on schedule. Just a lot of hairs, no lumps or hanks, but I had my hairdresser at the ready and she cut my hair very short that morning (number 3 clippers) which saved a lot of mess. Some people shave their head but I felt that was a bit sudden! The rest followed inexorably - I wore a cotton night cap (your scalp may feel quite sensitive a week or so before hair starts to fall) and could just shake it all out in the bathroom sink each morning!

I only had one useable arm for needles ( lymphoedema after surgery, a whole other story) and I managed through 6 months of chemo without a line or port, but many find a vein saver preferable.

You might like to think about how you treat being bald - the Sinead approach (my skull just wasn’t such a good shape!), scarves and hats, or a wig. Many of us end up with a combination of all. I worked through chemo (as I said, not as bad as I feared) and a synthetic wig was great. No-one knew unless I told them. Everyone has their own preferences. Very best wishes.
Blossom1961
Member
2 years ago
My hair started coming out on day 19 but my scalp was quite sore prior to that. As Afraser says, a cap worn at night eases that. I cut my hair short prior to it falling out (both times) and this also reduces the pain.
I have a port for my infusions. My first port was in my chest which they removed. This time around it is in my arm. Not sure what the choices are with pic lines.
My cancer returned in my lymph nodes which I found strange as the surgeon told me he did a clearance but the doctor doing my biopsy the second time around insisted most of my nodes were intact and that I must be mistaken (even though my paperwork states anxillery clearance) I was pretty annoyed too as the worst area is one that I have been complaining about pain in since the first diagnosis. I have moved on from this annoyance as it isn’t worth spending my energy on. It sounds as though they caught yours before it spread so whilst chemo is yuck, it is also doable. Just take one day at a time and don’t worry about what might happen as many breeze through it. Also, don’t be shy about asking for help.
Any questions just whack them up here and someone will be able to help.
Sending big hugs
Hendrix
Member
2 years ago
My hair fell out within 2 weeks of first chemo...i wish i had a port put in as 6 years later and my veins are shite!! Drink lots of water before and after each chemo...i would take a walk after each session and when i still could...i found the red devil kicked in on day 3 and felt nauseous for about 10 days...docitaxel kicked in around the day 3 mark too and I felt like road kill for about 5-7 days...i couldn't taste anything...I guess its better than the alternative...let your oncology team know of any side affects or pain...take care of you x
Abbydog
Member
2 years ago
I'm Sorry for you to now be looking to have Chemo.
It was part of my original plan after Mastectomy with axillary clearance, followed by R/T.
I did not find Chemo too bad. All of the side effects were manageable.
But everyone is different, and you cannot predict how you will be.
The Chemo suite prepared me well, with their Chemo education session.
I was made aware of possible side effects, and always asked questions.
I was offered the Cold Cap, and had a very good result. I did not lose much hair, just thinned a little.
Try it if you can. You should know if it is not working for you after 2-3 sessions.
I had Epirubicin, Cyclophosphamide and Paclitaxol, over 20 weeks.
If you want to know more about the cold cap from me, just message.

I too recommend a Port. Especially if you are to have a lot of Chemo infusions.
I say this not from just having had Chemo. But because it has preserved my veins for life after Chemo.
Having survived the treatments, I am only meant to use my non cancer side arm for bloods, BP etc.
As I had an axillary clearance and could be prone to Lymphodema in the future.
Since BC treatments I have had many other operations. Breast reconstruction ( 2 ops), x2 Knee Replacements, and other smaller procedures. Good veins are always needed.
So the Port saved them for use in my one arm, for life now.

Please ask anything. Write down questions as you think of them, to ask your Drs, and Breast care nurse, if you are lucky enough to have one.
Erko_Girl_68
Member
2 years ago
I am sorry to hear about your experience with treatment and that you are now looking at chemo. I went through two months of A/C and 'The Red Devil' (doxorubicin) fortnightly treatment. It was rough but I had been warned about the side effects and ultimately the treatment shrunk my tumour. I am now doing three months of weekly Taxol, with far less nausea than A/C. As everyone here says, chemo is a personal experience.

I am not a veiny person but the nurses have had no trouble finding veins, using the ultrasound machine in the clinic. I did not use a cold cap because I thought it might be pointless with The Red Devil and because I was often quite cold. I had lovely mahogany hair. My hair started falling out between my second and third sessions. The third chemo just fried my hair and it just looked awful. I got my husband to do a buzz cut which looked stupid because it was patchy. I went the full Sinead and have been for a few weeks so it grows back evenly.

Preparation was partly practical and partly emotional. I made the mistake of not ordering caps or headwear beforehand and the postage took two weeks! I had to borrow an uncomfortable pink cap from the clinic before mine turned up. I ordered a pretty tie-dyed comfort cap from Elly-K which I cover with scarves. I have a bamboo purple cap from the Hat Show that I wear at night. I found it important to be comfortable, so I wanted bamboo or cotton fabrics, with no big seams. I felt pretty fabrics or colours I love would cheer me up. My cap fits under my sun hat, which makes me happy.

Before I shaved my head, I tried to psych myself by watching the documentary on SBS about Sinead O'Connor about a month ago :'( The week she passed away I had a good cry for her and for my hair. I rang my hairdresser to explain why I had not been back and they were so lovely. My hair was my identity and it took a few weeks to acknowledge the loss. As it gets towards the warmer months and once I get a bit of fuzz on top I might not wear the caps so much, in honour of Sinead <3
Fufan
Member
2 years ago
Everyone is different, and there are different chemo regimes, but here’s my experience. I had my hair cut short before chemo, and when it started coming out in handfuls I had a friend, a former hairdresser, shave me. Perhaps I was lucky it was full-on Covid time, and winter, but I didn’t go out much, and when I did I wore a turban. Despite my worst fear, I had no nausea at all, and the other side effects were manageable. Maintain maximum hygiene, and look after your teeth and gums. My biggest mistake was not to exercise to my maximum ability: I came out of chemo almost immobile. Then again, I was 75, and physio fixed me reasonably quickly.
Good luck with it, and remember management of chemo is improving all the time, and some almost sail through it.
Maree72
Member
2 years ago
Thank you everyone, for sharing your advice and stories, my journey looks like its headed right back to the very start, with more mammograms and ultra sounds needing to be booked after the MRI results have come in and something a lot more worrying that has sparked the teams concerns - just my luck as my breast care nurse said to me on the phone yesterday, your cancer is not not behaving as it should be ?? mmm guess I better brace myself for next weeks meeting with the team , Ill have them in depth next week along with the Pet CT scan ones too.
Fun times,
Can I please ask where you get these caps you speak of, is this through the cancer council? I already have 1 head scarf from when I rode my motor bike, I tried that on yesterday o get an idea on how I'm going to look, to try and mentally prepare, if there is such a thing, but was keen to learn more about one for sleeping, my aunt who has also done this trip down breast cancer, and chemo also advised me that the head and hair can feel sore too, along with chemo will stuff your veins, so I have already spoken to my breast care nurse in advance about this pick line or port to try and safe what we can. slowly getting me head around all things yet to come second time around (this time) 1st time was such a shock, that I'm a bit better now on handling this, although can still have the odd bad or sad day too. what a roller coaster huh ??
Blossom1961
Member
2 years ago
many of the hat or wig shops now stock cancer caps and you will find a lot of suppliers online too. Go for a natural one that lets your head breathe. Bamboo and cotton are quite common.
Erko_Girl_68
Member
2 years ago
I use the comfort cap for my daily headwear. They ran out of colours when I ordered so it must be popular. They ship from NZ.

https://elly-k.com.au/wigs/headwear/

I ordered a cloche cap from the website below. It is a bit thin for daily wear but is very nice to sleep in. They ship from SA.

https://hatshow.com.au/collections

I have not ordered anything from here but worth a look. Some turbans are more expensive than others.

https://chemohats.com.au/collections/christine-headwear?page=3

Also, look up the Pink Sisters but I do not know how to order from their website.

https://www.pinksistersparties.com.au/home

Once again, sorry you are back to square one with your treatment. It is a roller coaster!
Maree72
Member
2 years ago
@Erko_Girl_68 thank you so much for sharing the links and advice, I will most definitely look into all of this, thank you everyone for all your support and advice, its going to a hell of a battle by the looks of things and from what my breast care nurse as already advised me, next Tuesday is when I find out all my results and learn my fate