chemo question please?

Maree72

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  

Afraser

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

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

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

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

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 

Fufan

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

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

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

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

@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_68

No problem. I'll be thinking of you next week. 

Tarma

Hey @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. 

Tarma

Oo @Maree72 I found something that might be of Interest,, I haven't read it yet but lol but hope you might have time...

 https://www.komen.org/breast-cancer/treatment/issues/genetic-testing-after-a-breast-cancer-diagnosis/ 

Hope the link works 😃

Tarma

Ok just tested the link l didn't work 😝

But copy paste to Google did 😁

Maree72

Thank you @Tarma the link worked well, I'm on the now cat 1 for genetic testing, after more appointments with my team yesterday , they are again getting in touch with the genetic testing team here in Brisbane to get me moved from a cat 3 to a cat 1, my results didn't come back to what anyone wanted to hear, including the medical team. I've been looking into the hair coverings, so thanks for sharing, I'm now off for another biopsy on the original offending boob that had the surgery done 1st time round, another 3 lesions found by MRI and mammogram & ultra sound, but now I'm off for a MRI guided biopsy on the right breast too, they are chasing whatever they have found there, that the MRI showed but the mammogram and ultrasound didn't pick up, now facing the very real fact I could be loosing the breast , sleeping isn't going well, and all my dermatitis  is breaking out on my hands and arms due to all of this stress and I guess extra tests of what's been going into my body, feeling incredibility lost at the present. 
Thank you @everyone for you advice and help so far.