Breast Cancer Now Forum

I was seld employed too, I think that was a contributory factor for me being given Paclitaxel (it is called ‘Taxol in Velvet Gloves’ I worked from home throughout. Lits of conference calls and web sessions! My memory was shocking though (still is!) Chemo brain is like Baby Brain!! I did get gradually more tired/less energy during the Pacltaxel But NOTHING like I had expected. 16 of us in my chemo gang (we set up a Facebook closed group after meeting in a thread on here (Best idea ever for support during and after chemo!) Of the 16 only 2 women suffered ANY nausea. One was anorexic so had no reserves (I ate my way thru it! Put on about 2 stome but didn’t feel sick at all! And I thought chemo made you skinny from throwing up! 🙄 Not any more) The anti emetics they give you are amazing nowadays. EMEND is the big one that you take at home in the morning of chemo then took again the day after. You are sent home with a big bag of drugs to help you after chemo and stop you feeling sick. STEROIDS: For anti nausea/infection (I stopped taking these cos I got too wired!) In addition to Emend and Stetoids I had 3 types of anti nausea tablets to take at different times during the day: Ondansetron Metoclopramide Levopromazine (was meant to be in case of severe nausea at night, but I took it as it made me sleep like a baby for those first 2 days after! Nurse was not happy with me 😂 ) No-one else in my gang got given Levopromazine.Think I did because I suffered really bad morning sickness when pregnant so they thought I may suffer. I didn’t 👍 PM me if you want to chat. I may have some useful i fo I could email you.. I did a LOT of research!! ... View more

I’m 2.5 years clear now. I had no doubt about opting for bi/mx with DIEP flap recon. Researched the hell out of all options (had chemo first so lots of time to think about it) Had to go to London for surgery though, as my local Surgeon in Hampshire refused to do it simultaneous even though DIEP flap result is better if you do... (plus no dreaded expanders!!) Bloody amazing procedure! (Available on NHS...Charing Cross specialise in it) But I ended up having a load of issues in my recovery, and am not happy with the result (GREAT TIP: WRITE ON YOUR CHEST WHAT YOU AGREED TO BEFORE YOU GO INTO SURGERY!! That way I would have got the D cups I had agreed on intead of the H cup momster moobs he gave me!!) Currently on an 8 mths waiting list for revision survery! Not ideal. Hopefully on e revision surgery is done amd I have my flowery tattoos I’ll be 100% happy. Just been a long tough recovery. (My friend had single MX/DIEP recon by the same team and had ZERO issues, so I think I got unlucky tbh. Smaller boob recons seem less problematic.) MX with simultaneous LD Flap recon seems less problematic, but every option has pros and cons. Chemo was not anything like as bad as I expected. Day 1/2 Felt wired (lke I’d had way too much redbull) Day 3/4 felt OK Day 5/6 crashed... just felt incredibly tired. Just needed to lie fown and close my eyes (seriously, I have had worse hangovers!) Day 7/8 Iiterally woke up feeling completely fine. Then had 2 weeks of normal before next cycle. Each cycle the ‘crash’ bit extended a day so by the end it lasted a week, but still just super tired, not ill. I had EC every 3 weeks for 4 cycles Then had the ‘T’ bit (Taxel) weekly (Pacitaxel, not Docetaxol) over 12 weeks (splitting it out is gentler than having FEC-T in 4 cycles with Docetaxol.) I had to work throughout chemo, so was critical I was not wiped out. Ask if you can do this. Push for it. I had an easier time than my buddies on FEC-T, although they were finished in 12 weeks and I was 19. Swings and roundabouts!!) ... View more

If it has spread to your nodes then there is not much point to the ONC test because there is then a higher possibility that some cancer cells have slipped into your bloodstream and the little buggers may be floating about looking for a new home. That is why they recommend chemo pretty much for all if it has reached the lymph nodes. Mine had not spread, but the bogger of my two lumps was HER2,+ and that is also a contraindication for the test /no chemo option because is is way more aggressive and likely to spread than just Hormone positive. There are days I wish I had braved the no chemo version. Also days when I really wished I had opted for lumpectomy versus bilateral mastectomy, but I had lumps both sides and my surgeon was wary of radiating both sides. With the mastectomy I avoided radiation therapy at least. But I am a single parent of a then 11 year old, so went the full monty just to be sure. ... View more

Sorry about all those typos!! Damn iPhone and big thumbs!!! If you Or contact Mistletoe Therapy UK (charity in Aberdeen.. (google them, I don't think I'm allowed to post links to external sites on this forum) Scots lead the way with this in UK.. lightyears ahed of us in England!!) Their location map shows nothing in Ireland though. Yes To Life (another charitable site focusing on holistic therapies) is brilliant. Their search engine shows no Mistletoe practitioners, but it may not be up to date. May be an idea to contact: Action Cancer House 1 Marlborough Park Belfast Co Antrim BT9 6XS UK - Nothern Ireland http://www.actioncancer.org info@actioncancer.org Tel: +44 (0)28 9080 3344 Therapies available at this location: Aromatherapy Counselling Healing/Therapeutic Touch Massage Meditation / Creative Visualisation Reflexology They may be able to point you in the right direction to ver ther. You can source Mistletoe direct from German manufacturers IF you have a prescription from a holistic practitioner. They won't just ship it out to you. You need to have at least met with a trained practitioner to know which type is best for you (they have different types, age comes into it), and how much your dose should be. You need a nurse to show you how to inject it. Find out if anyone in your your local GP Practice is a homeopathy fan and ask specifically to see them if your GP won't play ball... they may help you (my GP is a not terribly adventurous 'budget' kinda guy.. the lady doc who WOULD have supported me had just left 😰 ) Do press your GP though, this does not actually cost a lot once you are trained to inject yourself. Mistletoe is pretty cheap. All the very best with whatever you decide. ❤️ ... View more

Hi Angel. You can see all my previous comments below... I really wanted Mistletoe Therapy in conjunction with chemo after everything I read about how much it is used in Germany and France (mostly in conjunction with chemo to reduce SEs and improve chances of survival... I was turned onto this by my friend in Canada raved about it... she elected to use it and vit C injections and a load of holidtic dietary stuff instead. So fast forward 2 years. I mever did manage to get it in time for my chemotherapy. London homeopath lady was off on sick leave, and the guy standing in for her was offering oral drops not sub cutaneous, stating drops were equally as effective (a complete lie, studies find drops nowhere near as effective, direct injections way better) Anyhow, managed to get him to agree to the more expensive option of injections but he then could became hard to get hold of so I started chemo without it. Turned out chemo itself was nowhere near as awful as I'd antiipated. Yes, I lost my hair (wish I had at least tried the ice cap now.. chemo nurse talked me out of even trying it 😡 ) Anti nausea tabs you get now are amazing (Emend/ Metachlopromide etc) not once did I even feel slightly sick! I felt incredibly tired in the first week after (days 5-7 were my 'crash' days), but in reality this was only for 4 cycles. (I had 4 x EC over 12 weeks, then weekly Paclitaxel over the following 12 weeks... Packitaxel is called 'Taxol in velvet gloves' in the industry... if you can get this instead of Docetaxol please do... WAY less effects. (I got it because I was self employed and needed to work through chemo, a couple of my friends got it because they were having such a rough time with Docetaxol their Onc flipped them.) Anyway... I responded BRILLIANTLY to chemo. Biggest lump reduced by 50% in first 2 weeks. I could have elected for lumpectomy but because I had lumps both sides did not want to mess about and went full belt and braces.. bilateral mx with DIEP Flap recon (amazing procedure but another story) I had planned to go onto mistletoe after chemo as a 'maintenance' thing, but 2 things stopped me. 1. I responded so well to chemo, after the op (and now on Tamoxifen) I felt it was pointless. 2. My Canadian friend who elected homeopathic treatment over chemo. It did NOT get rid of her tumours. In fact they grew. She eventually agreed to a lumpectomy but 6 myhs later she needed full mastectomy and chemo as it had spread to her lung. Traditional drugs seem to be keeping it at bay (she stil also injects Mistletoe, she is a big believer in homeopathy) Me? I'm now not such a believer. I was never brave enough to go full homeopath. It has meant my friend's has spread. But I do think that all those Germans can't be wrong. My advice would be to take it in conjunction with chemo. (Though if your looking lump is tiny and not HER2 maybe a lumpectomy plus Mistletoe would be enough. I just don't know tbh. Looking at my son as I type this I would just not want to take the unnecessary risk with my life. I think much more study is needed on Mistletoe. I DO believe the cure to cancer is in boosting our immune systems, and that yes, Mistletoe does this to an extent, but you need to really study German use of it. When would they use just Mistletoe and when would they recommend it as compliment to chemo. I'm not enjoying Tamoxifen at all (reduces oestrogen levels... both nine fed on oestrogen/progesterone so they put me in Tamoxifen for 5-10 years to keep those levels down. Gives me joint pain and I don't have any get up and go... but thst could also be a touch of depression pist cancer and caring for my dad (92 with dementia) Life has just been super rough the past 5 years. Not sure what is Tamoxifen and what is mother nature! What is your lump? Size? Stage? Tupe? Have you had sentinel node testing? Really important to check if it has reached your lymph nodes... if it has them I'd 100% recommend chemo. Don't mess about. Time is of the essence once it is in your lymph nodes to prevent Mets. ... View more