our first chemo

Hi 

Is this EC chemo ?  If so any hairloss doesn't start until around days 12-20 afterwards.   Even when using the scalp cooling cap there can be some hairloss - the usual sign of this starting to happen is a slightly sore scalp and a 'feeling' like wearing a too tight ponytail, but this may be more subtle with the cold cap being worn and even less with shorter hair. J never used it so I don't really have experience of shedding when the cap is used.

As you have assumed any G-CSF white cell boosting meds can cause aches. These are mostly lower back/pelvis and thighs as these are the the areas where most of the cell boosting occurs.

The generic name for Zarzio is Filgrastim (info link) so if you see any messages mentioning this, it is the same med.

Hope the chemo is kind to her and any Addisons meds don't add to her side effects.

Take care, G n' J

hi Dreamthief and thank you for replying.

her chemo is FEC.

my wife is really feeling no different than she does with her normal addisons symptoms on a mid to bad range addisons day, not sleeping great but then neither am i so imagine this is just us worrying.

she has started taking her normal addisons steroids as from today at a double dose for a few days, i can monitor that, no problem.

id kinda thought my prodding for the cold cap had worked for this session but we will wait and see, hope it works as it's a big deal for her.

xx

Hi  

Im on EC. Second cycle day 17 my experience of hair loss with out cold cap is .. no shedding til about day 6/7 second cycle then only light . It was about day 14 when it speeded up. Now have wispy covering but temp dropped so need hat on .

Personally I went for pixie cut two days before chemo . I had wig at the ready and also selection of hats from Amazon . Bamboo sleep hats are good to stop any loss from rubbbing head on pillow . I also have decided not to shave as don't fancy stubble so hairdresser keeping it tidy at minute 

hope it keeps going well

thank you Margaret xx

I'm on day 5 EC cycle numbet four and cold capping.  I don't know if there is a different (higher) dose of these two drugs when the F is dropped.  I lost about 40% of my hair my hair from day 18 - 25 after first chemo (the second EC was day 21, though don't think it was wet enough. It then went to a light shed, mostly on the same days.  I've a couple of bald patches at the back and behind my ears which are covered by the top which is intact but thinner,  but probably have 30% left.  I wear a bamboo scarf when out thr house to cover the back, but with my fringe and hair out at the back. I'm hoping that once it starts to fill in after a few months I can cut it shoulder length (it's currently c.18 inches long or so).

The bamboo sleep caps are really good,  but there is a variation in sizing, so make sure they come from the nape to the forehead or they'll come off in the night!

thank you, londonmumof2.

im just hoping she gets away 30 or 40% loss, max, i'd sort of thought or more, hoped that get a week out the way and the battles half won.

its her big worry but i think its just a battle to focus on, i sort of think, if we can battle this part of the whole situation, win small battles to win big wars, so to speak.

hope your all feeling as well as possible xx

hoping everyone is as well as possible.

we finished 6 x 3 weekly FEC 2 weeks ago.

i would say it went quite well (i wasn't having it) compared to what we were expecting.                    my wife was still able do a 32hr job with just chemo days taken off but it hurt and it really was a sight to see the strength of her, quite incredible really, stubborn as a bloody ox, i got to see it all, everyone else got the hidden version, id sort of say it was like a very long bad addisons day, so, i think in a very odd way having addisons for a few years may have preconditioned her.

my wifes hair was cut from very long to very short after the first session, we felt that the cap would work better on short hair, i would say she lost 10 to 15% of her hair, certainly no more than that, hair is in fairly bad condition though, the wetting of the hair/scalp completely is key i believe, she hated it with a passion, no one else had it that we saw, so cant really compare how others got on.

we now on monday the 27th start the herceptin 17 x 3 weekly.                                                          im a bit concerned as my wife has been told its much easier, (easier probably the wrong word) than the FEC chemo but ive said take nothing for granted, prepare for the worst hope for the best.            i dont want to start reading all about and then explaining the possibles, probables etc etc because it'll be what it is but a quick heads up might be useful if anyone has any quick tips.

thank you in advance xx

Hi

Glad you are thru chemo my EC x6 finished 4/5 weeks ago . Bald (no cold cap by choice) but hair starting to come back thru . Only other prob is toenails coming off . 

You don't say if your wife is having Herceptin infusions or injection . 

Im on injections  18  x  3 weekly had one so far . I was still having chemo SE but if there was anything it was very mild headache . I was told to warm the bottle up in my hand as it hurts less going in . 

Wasnt too bad just stingy . Didn't even get any reaction on injection site . It's not into vein but just under skin on thigh . Left the unit about ten min later .

Apparently if you get infusion you are at unit for about six hours in case you get reaction . Everyone different but at least one report on here of a bad reaction instantly . Causing very bad stomach upset .

Have alook on chemo site and ask on theresomeone may come forward with their experience

hope all goes well 

margaret x

hi margaret, glad your out the other side too.

im 99% certain it's injections but i think the first one might well be an infusion, sure i read that in some cases that's what they do, my wife has never had problems having injections but the past 3 months they for whatever reason have been more painful, she had a few swollen and very tender veins after the chemo a couple of times.

i'll take a look where you suggested, just dont want to get too bogged down with detail unless i really need too but on the other hand id like to be a bit prepared, without worrying her too much, if i read too much info i struggle not to tell her what ive read, its like id be lying to her, then if things got bad and i hadn't told her about it, i'd feel bad about it.

x

Hi

Ive been left with thrombo phlebitis in my arm after EC .quite painful until the Onco suggested cleaning vein out with extra saline .This may also be your wife's problem with veins . The swelling and tracking remains but should clear in few months .

Hopefully it will be injections for your wife's  Herceptin 

Going forward I'm also on Bisphosphonates infusion every six months for three year . So I m hoping no more problems with veins . 

Margaret