Forum Discussion
Maree72
3 years agoMember
chemo question please?
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 possibility
Is 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 :)
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 possibility
Is 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 :)
22 Replies
- TarmaMemberHey @Maree72
I'd check out JAS fashions , sorry no link lol but if you google chemo headwear you will find them,
I just received my order , placed on Wednesday arvo arrived Friday morning 😃
5 different items, and I'd recommend the bamboo sleep caps , so soft .. and not expensive at all..
As for chemo, I've just started my 1st cycle ,,( is that the right term? Cycle? I'm still learning the lingo) it was a looonng and interesting and a little frightening..
Mine is an aggressive type HER2 Pos .. and with the stronger drugs and higher dose I was assured cold cap or not , my hair was history lol
Also I realised something, I was twisting myself up in knots for no reason. Because when the lovely RN spikes that first bag of nasty stuff thats going to flowing though you any minute,, they are also right there, to monitor you, if you have a life threatening reaction, you're in the best place you possibly could be. And for me, a day that started out with a tenion headache and many nervous pee's lol ended very positively..
the lesser side effects aren't fun , obviously! but all my research and the millions of questions I've asked every person that I've met since my diagnosis, that has or had cancer .. well my conclusion is, nowadays are very manageable.. and being informed definitely eases your mind.. the amount of info on chemo drugs on the internet OMFUDGINGG but if you're careful with your research and ask your Care Team the things you cant quite get ,, then you got this chemo girl !! You gunna kill it..
✌️&🧡 T. - Erko_Girl_68MemberNo problem. I'll be thinking of you next week.
- Maree72Member@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
- Erko_Girl_68MemberI 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!
- Blossom1961Membermany 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.
- Maree72MemberThank 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 ?? - FufanMemberEveryone 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. - Erko_Girl_68MemberI 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 - AbbydogMemberI'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. - HendrixMemberMy 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