Hi Ladies
I have posted on this site a few times over the past 2 anad a half since being diagnosed with breast Ca and Bone mts (Lhip) Well my bone mets remain stable , no spread , no pain and not on any bisphosphanates since last Oct. However over the pst 3-4 months I have been feeling generally unwell, tired and GI symptoms. Discussed this with Onc who reassured all was well and that a change in treatment or a CT scan was not required. Me being me was not happy with this so I arranged a CT scan privately. Lo and behold I was right, not that I wanted to be, and I had further spread into two lymph nodes in my abdomen. The Onc was most surprised!! As you can imagine I am totally distraught and have probably shed more tears than the thames barrier could cope with.This is worse everytime I look at my two children (12 and 15) After a long and frank discussion with the Onc, I will spare you the details, I have decided to go down the route of chemo, starting this Wednesday, rather than a change of hormonals. Can anyone advise me on what to expect re-side effects etc. Should I have my hair cut sort before it starts to fall out? Where do I buy scarves etc? Will I be to continue with work and my studies ,final year of MSC.
Alot of questions but any replies will be most appreciated
Thanks in advance
P.S I have also had to cancel the summer holiday like many others
Hi ot2walk
Welcome back to the forums, I’m sure you’ll get lots of support from your fellow forum users.
I have put for you below the link to a thread that is running as a ‘sticky’ in the Undergoing treatment - chemotherapy forum - Top tips to help you get through chemo. There’s loads of hints and tips on there from other users which you may find helpful.
breastcancercare.org.uk/forum/viewtopic.php?f=25&t=19110
Don’t forget if you need a good listening ear then the helpline staff are here for you.
Kind regards,
Jo, Facilitator
Hi there, so sorry to hear you have further spread it must be a worrying time. I have spread in my liver but due my first scan in the next few weeks.
If you have never had chemo before I would wait and see regarding the side effects as it is so different for everyone. Some people breeze through it and others have a tougher time. I would see how you go and maybe explain this to your work / school. I have been having a week off work every time I go in and my main side effects are tiredness and a bit of upset stomach. If you are able to study from home every 3rd week it shouldnt be too bad but as I say everyone can be so different.
Also regarding the hair do you know if you have the option of wearing the cold cap? It only works with some chemos, I have been using it and kept my hair. It has thinned a bit and you do have to cut it to just above the shoulder but its still there! You should only wash it once a week as well and not use a hair dryer, straighteners etc etc.
Sometimes the cap doesnt work so I did go out and buy some scarves just in case. I just went to topshop, warehouse, accessorize and brought them. I also brought a wig from a shop in London, cant think of the name of it now if you need it let me know and I will dig it out. It was £185 and I was surprised at how good it looks, I dont think anyone would notice its not my own hair if I wore it out. Touch wood I havent had to use any of them yet but I have them at home just in case.
Take care xx
Hi ot2walk,
I am sitting at the finish end of the obstacle race you have ahead!! Thought it might help to hear from someone who has done it and by the way I am not brave, don’t even like needles lol. I started epi/cmf on 22 May 08 and was on chemo for 28 weeks as part of the TACT2 trial. The epi is raspberry pink, turns your wee pink instantly until it is out of your system (under a day if you drink a lot). Epi is one of the 2 chemos that are considered very effective and kick c up the back side. It also eats hair,any hair on your body. It is a quick hospital visit as only one drug. It used to hit me about day 4 and I would be on the sofa for 2-3 days then gradually getting better, followed by one pretty good week and one great week before it repeated. Worst thing is terrible constipation, like quick drying cement! Then I went on to CMF which is much milder but gave me the runs and could not eat any fruit or veg (not a common effect though). Worst bit about that is going on day one and back on day 8 so you get 2 visits each 4 weeks. No days on the sofa at all for me on that. As to hair, well cmf does not touch your hair so the trial nurse said if I could stand the cold cap for the epi I would most likely keep hair right through. She was right and befoe I had even finished cmf I had dyed my hair (organic) and had a cut, even if it was a pixie cut!Had it cut to chin length before I started as that gives it the best chance. Had bald patches I covered with wide hairbands but never wore the wigs I bought. Cold cap was grin and bear it for about 10 minutes and then you don’t notice it. Does mean staying in hospital hours longer but I felt safer being there on the early ones to be honest. Oooh by the way I was never sick not even close and no mouth ulcers just felt like morning sickness, fussy, delicate and sore tongue. I really hope this will help you bravely walk through that door, the first is the worst but it is also the first step towards finishing it too. I continued my MA through it but wrote some really weird things, found reading books hard to hold on to information. Chemo brain gets worse as you go on so do as much as poss early on.
So from this end of the track, can I say good luck and you can do this really
Hugs
Lily x x
Many thanks Jo,Kerryrose and Lily for taking the time to reply. I feel a abit like a rabbit caught in the headlights at the moment…do not know which way to turn. Hopefully all will go well tommorrow and the subsequent weeks.
Kerry you will be in my thoughts regarding your scan results. I will also have to have reqular scans from now.
I hope to remain in contact with you.
Take care
Hi Ot2walk,
Very sorry you’ve come along to join us here.
It is such a big thing to deal with I hope you are able to give yourself time to get over the shock.
The treatment you are having I was first treated with and very well.
I only lost my hair with the Epi it grew back with the Cmf.
Accessories have some very nice scarves in at the moment.
I went to a local wig lady to choose my wig this time as I have in the past ordered ia the internet but its a hassle to send stuff back.
My children are 11 and boys are 9.
I have started menory boxes there is a post about them.
It not nice to think of but I was facing brain surgery at one point so I would urge all mothers regardless of cancer to think about them.
Winstons Wish is a good site.
Good luck with your treatment,
Please keep us posted
Tess.X
Hi O2walk
i am due to have my 3rd epi next week… my hair started to fall out about 14… was quite painful and felt like somebody rolling a hedgehog on my head prickly side down… it was like taht off and on till pretty much all my hair fell out…
nose hairs and lady garden fell out first!
if you live in scotland you get a wig on the NHS every 6 months while your receiving treatment, mostly iv been just going comando but have some scarves and buffs just got from places like asda or h and m.
i get my chemo on a thurs and i feel a bit rubbish for about 3 or 4 days (1st weekend)following it but they dose you up with steroids and antiemeitics to stop you feeling sick which i think help making me feel poo.
the rest of that week i feel pretty good and thats my good weekend the following week i get quite tired and have more rubbishy weekend… bloods are low and feel a bit drained then start to perk up just in time to get my next lot.
i get a kinda sensation of morning sickness just nausea but no vomitting… so i tend to just sleep in then eat ginger biscuits and feel better after iv eaten… i also get a furry mouth and gets a bit flakey and food tastes funny… been drinking loads of fizzy juice which seems to take that layer of cells off, also like sweeties with sugar on them and spicy food, whereas minstrels tastes like stones, melon tastes like perfume and water tastes like chemicals… very weird indeed.
i also have problems with constipation but had that before aswell as i was on tamoxifen for previous BC but dont have secondaries. my kids were 15 and 11 when first diagnosed and now 18 and 14 so a bit older and because everything was ok the first time i think they arent really very worried.
i have really sore veins and had loads of problems with them… the epi is quite rough on your veins but i think it generally takes a few doses before it affects them but mine was about two weeks after first one and then swapped arms and was about 2 weeks after 2nd one i got pains in the other side… my advice is just keep stretching and rub in ibuprofen gel.
iv not started cmf yet but i wont be getting it on day 1 and day 8 just on day 1… but most people have told me its not as bad as the epi.
hope your doing ok after epi no 1
Lxx
Thanks Tess and Lulu34
I am having my Epi/cmf together. Lula you have described my SE’S to a tee!! I was tired day 4/5 then felt well then dipped again on day 10/11. Feeling abit better to-day. I have organised a wig and arranged to have my hair cut short this week…I am sure I will look a right bonnie chook!!! I still feel sad and angry that BC has robbed not just me but my family of our future together. Also, maybe you feel I am just moaning, but it is not just our future plans this illness and its treatments effects it effects our anyday life now. Simple things like going out to shop for school uniforms or going to the cinema can become a mammoth task when you do not how you are going feel from day - to -day.
Sorry I do not mean to moan and complain.
Thanks again to everyone who has offered advice and support. Although after this reply I am sure everyone will give me a wide berth!!
Ot2
you have every right to moan and complain… we all have cos its bloody unfair.
iv never heard of anybody having their epi at the same time as the cmf… nobody seems to be having it the same as me either cos i have 4 epi 3 weekly and 4 epi 3 weekly… but most seem to get day 1 and day 8 like you but just not along with epi.
how many are you getting?
i dont know about doing an MSc i cant even concentrate enough to read a newspaper let alone read research papers… maybe you can put it on hold or do it over an extended time… i know one of the other girls on here mumytumbles is also in the last year of an msc and is putting hers off til next year.
Hi lulu
I am having 6 treatments in total. There are other ladies having this treatment at the centre I attend.
I hope to continue with my studies, I can do most of the work from home and on-line as it is my final year.
Trying not to moan and complain today…but it ain’t easy
Hope you are coping with your treatment