Research radiotherapy, handling AC chemo, taxol, head care

Thanks for all your comments, I do appreciate it. 

I'll try some of the body wash as suggested by a few of you.  The hair loss is a funny thing, isn't it!  I've not yet lost all of mine on my head, although it is very sparse and I couldn't have left it unshaved.  I took a while to realise that I didn't have any underarm hair, and have now realised I don't have leg hair, although I'm lucky enough to still have eyebrows and eyelashes.  Know that may change too... 

And big thanks for the feedback on AC vs Taxol.  I know I'll have to wait and see.  Fingers crossed.  Good to know about the possible nosebleeds, etc.  I knew about the fingers and toes - I've already got a bit of numbness in my toes and my onco knows about that and will keep an eye on it with the Taxol. And I've already seen a radiation oncologist but had a bad experience, could get a second opinion, but first one cost me enough, can't afford to see another one at the moment.  And at the moment, half doctors are saying yes to it, half are saying they don't see why I would need it.  So like I said, I must be borderline, but when I had a double mastectomy, my surgeon believed I wouldn't have had to have it.  My GP is awesome, I'll have a serious talk to her. (she's had BC so won't mess around).

Adreinne, to answer your questions, I did get my hair cut short as soon as I found out chemo was a possibility - I was sick of it long anyway - then week 3 after 1st cycle is started coming out (mine not in big clumps, I just got sick of worrying about it after a few days so got my husband and kids to shave me - they gave me a mohawk!) and I've now got a great short wig and I'm getting lots of comments on my great new hairstyle!  I just smile and say it was time for a change!  I also have beanies for cold days and I have a few great headcovers for home.  I was told about one and I've bought 5 of them in different colours - hard to describe, but it's a tube headband, a tube of stretch material and can be worn several different ways, is super comfy and I think looks cool and funky.  I heard about them being sold at a chemist, but they had no good colours left so good old Ebay, where I've found them for around $4 each (even cheaper from China but shipping takes ages).  I'm thinking they will be good for summer too because they are not too heavy.  Pop my fringe on with it and I'm ready to go out without any fussing with my hair!  A friend also bought me a bamboo cotton cap which I also wear a lot, but it was about $40 I think!

I got offered a shift at one of my jobs last night - so good to feel normal and be back earning some money again!

Thanks again, have a great day!  I'm taking the kids to the beach :)

And here's a great quote I found on Pinterest:

Step into my shoes and walk the life I'm living and if you get as far as I am, just maybe you will see how strong I really am.

AND:  Never be ashamed of a scar.  It simply means you were stronger than whatever tried to hurt you.

I love knitted / croche type caps the best - kind of like loose / oveesized beanies

I bought 2 $10 each at Target that I just adore... easy to pull on and when on is loose so does not bother me one bit...

I also bought some fleecy ones at Aldi snow gear sale that I whack on when cold as fleecy material is sooo comfy....

Few times when I had party type outings with friends I wore bamboo wraps but I do find knitted caps the most comfortable....

I bought up fair few scarves and wraps and beanies but seem to be going to my 2 loose fitting Target ones 90% of the time. This is the pgoto of the Target ones I adore and 1 of the fleecy Aldi ones.

If wearing scarves you need heavier set ones as they do not slip or slide when hair is gone while thin ones that are silky will slide so you may need a thin cap underneath.

If goinf acarg way consider the head wraps that have long scarf endings as it is like a cap with a scarf attached so cap sits well and you wrap the hanging bits for volume or areange fashionably...

Not sure where U R based but if in Sydney worth going to the wig library at POW Hosp at Randwick... Only open once per week but so worth it as I bought up bamboo designed headwer there between 50 and 80% below lowest prices I could find anywhere else. And do not let the 'libarary' name deceive you - it is all brand new stuff and a proper retail setting :)

And yes - hair falls out in clumps... and they do not tell you that some patches will hang in there throughout the whole treatment (making me at least look like a Mad Max villan until I bought electric shaver and buzzed it off which I now continue to do every 1 to 2 weeks). If I was not buzzing it off it would drive me nuts as even after it was shaved the bits that stubbornly stay grew a whole 1cm in 2 weeks after Chemo 2 and bits that fall out fell out again... so part bald and part chimp like hairs standing up on ends poking through my caps and scarves... 

What can I say... - at least it does not get boring ??

Jel

Hi Donna, I had AC chemo and now up to 7 of 12 Taxol, to be followed by 5 weeks radiation. I haven't researched much about radiation other than the info here and what my dr gave me. For me, it is enough that they know what they are doing, and I want to throw everything at this cancer hoping that the side effects will not be as bad as the cancer. Maybe a bit head in the sand about it. Scalp care: I tried sorbolene as/after hair was falling, but found it too heavy and suffered a few breakouts, so switched to Moogoo milk bodywash which I use on my head as well, and have been fine since then (no flaking/dryness). AC v Taxol: I find the first week after each AC was very debilitating, then the next 2 gradually better, then back to square one again. I had allergic reaction to first Taxol (one of the 3% unlucky ones), so have to have extra anti allergy and steroids as premed, which means the night of treatment I don't sleep (good for posting comments at 2:30am while watching Wimbledon!), but other than that pretty good ie no nausea/bowel/digestive probs. Dry/bloody nose for which I use a Fess oil nasal spray which helps. Random days of unexpected tiredness or downness, which I just try to accept as anomalies when they come.

As you will see everyone is different. I hope my experience has been helpful for you. Good luck with your treatment. Jane

Mine did...but not all the 1st cycle. ..completely bald by the last

Hello again

Do you find any scarves or hats more comfortable than others? 

I'm thinking of buying some now while I can still look around.

i thought ALL the hair fell out :(

Adrienne 

I cut mine super short pre chemo and day 9 post AC round 1 when scalp started to hurt I had it buzzed off to a crew cut. Then arround day 11-13 it started to fall out like crazy - more than half in a matter of hours plus 80% of all hair in 24 hours...

Day of Chemo round 2 nurses suggested  shaving it completely to reduce discomfort which was done and easy going ever since...

I found staged approach gave me time to get used to new look quickly and did not find it at all upsetting even though I originally had a massive thick long mane... and strogly suggest that approach.

Had mine been long when it started to fall in massive clumps it would have been so distressing - not to mention really hard to manage...

I got myself a selection of scarves, wraps and caps expecting to be selfconscious but my staged chopping got me so used to it I do not bother covering my head unless really cold...

And yes, by week 2 on AC you will hate your hair as it turns into straw like consistency and where it is attached to the scalp I found it so irritating and painfull I personally could not sleep.  Also note when it falls it is not root and all - it actually breaks off at the scalp then grows again so each cycle there is more shedding if not shaved... so I keep on shawing . Also it does not shed evenly which made me look like an extra from a Mad Max movie so shaving is a must for me ??????

For someone who expected hair loss to be a big deal I have found it least anoying aspect of Chemo...

Well ... there is one thing thst irks me to ne end... They said on AC all hairs goes.... Then I find out NOT leg hair - legs you've got to shave ????????

I reckon someone "up there" has a very weird sense of humor ??

Hugs

Jel

Hi,

I use Moogoo body wash, shampoo and conditioner (not that I need much!). Then I also use coconut oil. It has kept my skin moisturised and no dryness. I attended a Look Good Feel Better session within 3 weeks of diagnosis and learnt about skin care and not touching my eyelashes (lost all of them on the top lid) and eyebrows (I was very careful not to touch and be gentle, they thinned out but still look ok, helped that I had thick eyebrows to start with).

I did well on AC but am finding I am exhausted on Taxol, on AC I got a 7-10 days break where I felt more like myself, the weekly Taxol sessions come around so quickly that I feel I don't get the break. I wouldn't say it is easier, it is just different, I don't like comparing the two. Probably hasn't helped I have an infection currently so it has been rough.

I asked for a referral to the radiation oncologist early so I could ask all my questions to the experts. The radiation oncologist websites have good info on them too.

I have just completed cycle 4 of 12 Paclitaxel and my hair has started coming back.....everywhere (bummer that was at least one positive of the hair loss, no need for razors!). The hair on my head has grown to a centimetre really quickly and has that super soft feeling, my 7 year old daughter loves rubbing my head and noticed it changed before I did.

And as for time, yes it flies by, I was diagnosed in Feb 16 and that seems like only yesterday. I won't be finished chemo and radiation until November all things going to plan.

Good Luck with the remaining AC and change to Paclitaxel. 

C.

OMG Ive got so much to learn about.

I didnt realise that there were so many different drugs that they can use for chemo. 

Ive just been booked for my Pre-op check so Im about to get started with it all. I have so many chemo questions but as Im not up to that yet I will just have to write them all down.

Im wondering if I should get my hair cut short short before my chemo starts or wait till it just happens... what did you do? I had no idea that the scalp could have issues.. 

Im glad to hear that you went back to work as that is what Im hoping to do to. My boss is being really supportive of all this for me.

I love reading everyones comments.  Well done for being 3 months down the track. You sound so positive which is great. 

thank you for your post :)

Adrienne

YAY for you and AC chemo not being too tough (and so jealous for it ??)

I am not moisturising my scalp as such but I wash it with a creame body wash (chemmart brand of QV equivalent sruff) every time Inshower and have found skin is loving it since I started doing it few weeks ago (I am on day 6 of my 3rd AC round)

Jel

Hi there

Well done for coping so well so far. I can't comment on radiotherapy as I didn't have it, nor on scalp treatment as  my head was fine after the hair fell out (sore and itchy before).

But Taxol! Like you, I had an easy run with A/C (4 treatments) - no nausea, no fatigue, worked right through. I did get a late side effect, after I had started Taxol (but almost certainly not caused by Taxol) - an arrhythmia, but that was probably a result (as so much in cancer probably is) of several issues - surgery, chemo, my age, and a bit of high blood pressure. Main thing is it is perfectly manageable, I have no unpleasant side effects, and not using much medication to keep my heart rate controlled.

Conventional wisdom is that if you tolerate A/C,  Taxol will be easy. Taxol however affects the soft tissues - so don't be surprised at a sore, or bloody nose, dry eyes. Vaseline will help your nose, and the problem will stop when you stop the Taxol. I did get peripheral neuropathy - some contributors blame Herceptin for that, but I am quite sure it was Taxol and so were my oncology nurses. Starts with tingling, pins and needles in fingers and toes. It can get extreme - painful and makes it hard to do normal things (or if in the feet, to walk), so don't ignore it if it starts. Most people return to normal but it can take a long time. You may need your dosage adjusted. Then again, you may not get it at all. I found Vitamin B helped, but talk to your oncologist.

I lost my taste buds! Very good if you are trying to lose weight, as everything tasted of precisely nothing, except a few things - again conventional wisdom is to try spicy, flavoursome food, but the things I could actually taste were eggs, bananas, avocados and salad! Recovered almost immediately when I stopped treatment. With luck you will be fine. If you have some side effects, keep focused on the fact that every treatment brings you nearer to the end, of chemo at least.

Best of luck