May 2017 chemo starters

[Mai7]

Anniej, I think the predict tool is good for measuring population within medical constraints but the variables outside of those medical constraints are too many to measure and too much data for the medical profession to collect and monitor. Glad you are doing well statistically or non-statistically speaking! You do make me laugh at times and that is good medicine! X

[Mai7]

I'll look up the Jonny Bowden book. Thanks for sharing MJK.

I looked up the book and found two others of his which looked good too: the most effective natural cures, and, the most effective way to live longer. (I think their marketing dept know how to get those titles grabbing attention!)

[Mai7]

You may also be interested in this article which I found only a few days ago:

http://main.poliquingroup.com/ArticlesMultimedia/Articles/Article/801/10_Ways_To_Lower_Estrogen_Toxi...)

[Anniej]

Ladies, not going near the predict tool! My consultant at diagnosis was very matter of fact. My cancer was bog standard, my treatment was bog standard, and I'll be on Letrozole for five years then reviewed , and then he'll see me in another five. That'll do me. I'll be 80 by then. 😂

As for the nutrition, I picked up a super link on the forum re foods good / not good for aromatise inhibitors. I've tagged it on my favourites and at the moment this is my bible. The property of each food is highlighted and relates to particular breast cancers. I'm sure lady bowler or one if the other CC will re post. Down one stone and loving it! X

[Raitchr]

I just had a look at that book on Amazon, it looks an interesting read, I will have to order it.

H

[MJK]

I'm with you on the healthy front too. I was fairly healthy before but have cut out alcohol, caffeine and refined sugar. I'm eating more fish and gone organic for meat and dairy. I'm also aiming for 10 a day on the veg, fruit, nuts and seeds. I've been reading 150 healthiest foods (Jonny Bowden) which is very thorough. At the moment I'm also trying to fit in an hour of walking. Hopefully I'll be able to keep at least some of this up once chemo starts...

[Mai7]

Raitchr, I'm with you there on the healthy me front. Whilst I am pretty much ideal weight for height and have been pescetarian since age 14, I was a regular moderate drinker (within recommended guidelines) and have had considerable stress over the last 8 years with divorce, taking on a mortgage again, a stressful job in the economic downturn (thankfully moved on from there into public sector),  a couple of friends dying and me being in three car crashes (none of them my fault). I'm learning to transform my life by letting go of control and allowing others to help more and staying emotionally neutral (in a mindfulness/Buddhism kind of way). I've quit alcohol and have quit dairy products and am pretty much now non-dairy pescetarian. I eat whole grain foods all of the time and natural sugars and more alkaline fruit and veg. I intend to no longer treat my body like a skip so won't be indulging in regular bad treats in future. Let us know if your dietician comes up with anything we aren't already reading! I agree that it is confusing and even the experts seem to get challenged on a regular basis so it's hard to know what to believe! The main thing is to make sure you don't compromise anything like calcium during the quest as this is important to prevent osteoporosis.

[Raitchr]

I haven't used the Predict website or anything, my Consultant said 4.8% chance of recurrance based on diagnosis, surgery and path results. I find stats confusing and alarming they vary so much. I guess the best person to ask is Breast consultant or Oncologist.

I too have changed lifestyle and diet. I am compiling a list of what I should and shouldn't eat and looking at foods which can prevent cancer cell division. It is confusing what to eat so I am going to ask my Onco to refer me to the dietician for best advise going forward. I also know I need to loose weight, lost 1/2 stone from diagnosis to start of chemo but know my "ideal" weight should be a stone less.

[Mai7]

MJK, Like you, I wish my stats could be better, however, those stats don't go into anything like lifestyle as a category so I'm going to focus on staying heathy and staying positive and fight with sheer determination to give me the best chance of staying in the positive percent. The will to live is a powerful thing so don't let those stats get to you. I know it's hard to be positive and strong all of the time - I aim to be either "up" or "getting back up" and that's as much as I expect from myself.  Xx

[MJK]

I'm having my PICC line put in on Tuesday, I've ordered a shower cover but was wondering if you got or bought sleeves to cover them and if so what size. I put my stats into Predict, chemo and hormone up it from 40 to 68% for 5 year survival. Not optional. Nor is being 'positive', 'brave' or 'strong' as everyone tells me but no-one can be like it 100% of the time.

[treehouse]

Anniej sorry r hair ball made me laugh. I imagine you licking the pillow in your sleep. My hair has not changed but my face is dreadful. I look like a heroin addict . Spots cracked and flaking skin. Dark sunken eyes. I tried a scarf on today and I look like mother Teresa. I am 42 and 13 days into chemo. I have already aged 30 years!!! I feel great so I just don't care!

[treehouse]

Hi. I think she mentioned that study. I have filled in a form. My councillor suggested mum get tested and my brother and sister have requested it too. We just worry how this will affect our own children. One step at a time. The progress in treatments for this disease is really amazing at the moment. Their future should be made easier.

[Raitchr]

Treehouse, my cancer was triple negative so as its aggressive chemo is always given.

My Mum also had BC 3 years ago. She had ductal in situ in one boob and lobular in situ in other. She had Bi Mx, clear nodes and didn't need chemo or rads. Hers was result of being on HRT for over 25 years according to the Consultant, she requested gene testing but they said due to her age and get it wasn't necessary.

I have found out about a study for gene testing which is still open to women to join. It is run by the Institute of Cancer Research in Surrey. The study is called BOCS looking at breast and ovarian cancers. I have sent the info to my Genetics Counsellor to see if she will send my blood.

[Anniej]

Hi ladies, must all be at that stage. Woke up in the early  hours with a hair ball in my mouth! What's all that about? Checking eye lashes and nose hairs now. I don't know wether to go for the big shave or try to hang on. I said from the beginning I wasn't bothered about losing my hair, so how strange that I now am. Perhaps it's the final insult? So, Raitchr, loving your comment. I'm not going to get bitter about it all, I'm going to get better and this is part of it, unfortunately. Going out to an art gallery today and enjoying feeling really well before session 2 next Friday. Good luck to everyone going in to chemo this week, and recovering. Stay strong. X

[busybeeS]

Hi Katie. I think we're at the same stage. My hair has been shedding in the last few days as well. It isn't noticeable yet, but like you I'm seeing v short hair everywhere.
Woke up with a bit of a sore throat yesterday, temp spiked last night to 37.5°C so phoned helpline, very reassuring that there is someone there you give you advise. Make sure you take your temp ladies, it's important to catch any issues early.
Thankfully it's dropped down to my normal temp today, but I have got a cold now. Hope it doesn't use up too many white blood cells - I need them!!

[treehouse]

Hi raitchr. I love your comment be bitter or get better. We really have no option. My mum had only surgery and radio but that was 30 years ago. I was really surprised when chemo was mentioned and also dreaded it. No one mentioned scores or percentages. I was just told with my type of cancer I was having it. However they have been really positive about my outlook and have in some cases completely reduced tumour. I know my drugs are different to most of you. But I feel really lucky that they are available now and I have ticked enough boxes to be given them. The cost of one of them is ridiculous and it is not free to everyone. I will put up with the pain if it gives me the best chance. On the whole I feel well looked after and positive. Also enjoying 12 of awesome 😊

[katie11]

Morning ladies and new ladies, weekend away is just what I needed. Nice family time. Hope your all doing well. After reading your posts I am quite worried bout the T part of my treatment. I'm having it weekly 9 times so hoping the lesser dose will be more manageable! Here's hoping. Hair is now definitely shedding but just as loose hairs rather than clumps at the minute. It is quite sad but also rather annoying to keep finding hairs everywhere xx

[Raitchr]

Hi Wandestrong, I too didn't want chemo, I feared it more than surgery. I didn't want to do something that would make me look and feel like death when that is what I am trying to avoid! My BC surgeon said chances of recurrance is 4.8%

I have only had one cycle of FEC and apart for 2 days when I felt rough and totally constipated it has been ok so far. Next time I know to rest a lot more and not be a super hero. I have agreed with my husband that the maximum I will do is get up, get the boys ready for school, wash the uniforms and shower in first week of chemo. Everything else can wait until the SE have worn off.

People say to me that I look well and am so brave. How do they expect me to look? I rested when I was rough, I eat well and have no stress in my life now I am not at work. As for being brave, we have no choice other than to be brave, that's what being diagnosed with cancer does to you. You either have to be bitter or get better.

My next FEC isn't until 1st June as Bank holiday Monday got in the way so looking forward to the next 12 days of feeling awesome before the next poisoning!

Best wishes everyone

Heather

[Mai7]

Wandestrong, it's a good decision. Chemo is tough but not the end of the world, it's just a big commitment in terms of obsessing over your health. My steroids are keeping me awake, hence why I replying so quickly! X

[Wandestrong]

Thanks all. I was initially quite adamant I wouldn't have Chemo, as I didn't want to 'feel' or 'look' I'll. However all that changed when I had an Oncotype score of over 50 which translates to a 34% chance of recurrence within 10years without Chemo. I was pretty much sold on the need for chemo after this, I want to know I've done all I can to prevent going thing this or worse in the future.

[Mai7]

We recently got Netflix too (is this a chemo stereotype emerging?) and I've created a craft room which I'm really pleased with so I can embroider, draw, make cards, bracelets, read and burn some aromatherapy oils. 

[Raitchr]

I have a Chrome cast on my bedroom tv so I can watch loads of catch up tv without having to lift more than my tablet and press connect, best invention ever for me!

[treehouse]

I got a pretty new duvet cover and Netflix in the bedroom. That got me through day 4-8. I told my husband i felt like roadkill. Then my gorgeous sister-in-law came to stay and spoilt me rotten (did my toenails) and kept me laughing. By day 10 I started to feel human 😊 I got 7 more to go!

[Anniej]

Thanks Treehouse, I think we all needed that reassurance. Must say I had a bit of a wobble when my Onco described it as tough! I will watch out for your posts. X

[treehouse]

Camomile tea and spoon of Manuka honey 🍯. That's my new Friday night. 🍸

[Mai7]

The Docetaxol (aka, Taxol) sounds like you really wish you could have a gin and tonic or two and you can't even do that. Now have to drink camomile tea and light aromatherapy candles for escapism! Wow, we're just out of hand rebels with the herbal tea! We'll get through it, we just have to get in the know with managing side effects!

[treehouse]

Ladies I have done one docetaxel ( you call it T) I joined this thread on day 8 and I was really struggling. This does not mean you will be the same as I have it along with 3 others drugs. I will discuss all side effects with onc next Friday and let you know of any painkillers or other tips. No one warned me it would be tough but then I don't know any different. I have had 7 days of injections. Right now I feel fine. Try not to worry.

[Raitchr]

Mai7, I haven't looked yet. I know it won't be pleasant but in the scheme of things it is possibly at least 1 really bad week, as in aches and pains and can't get out of bed, per 3 weeks for 9 weeks. Two of my T's Wil be in the school summer hols so not great but my husband will be at home so should be ok. I think we are all ready different to how side effects get us and hopefully there will be some meds that we can take to help. 

[MJK]

Hi Wande. Welcome to the last group you wanted to be in as a new mum, it's good that your daughter is doing well. I'm having 3 FEC followed by 3T. I start next week. I also have a 4 year old son who's just been trying on my new wig! Big hugs. X

[Mai7]

Gillyb, thanks for sharing the nhs predict tool. I just ran my details though it: age 48, ER+/her2- grade 2, 50mm, 4 local nodes and my best survival rates came out as 5yrs 87%, 10yrs 69% if I have adjuvant chemo, hormone therapy and trastuzmab. Now I'm already having neoadjuvant chemo so will this mean more chemo post surgery? Yikes! I just looked up Trastuzmab and it is also known as Herceptin which is used to treat Her2+ so don't know why it's recommending it for my diagnosis?

[Mai7]

Raitchr, have you checked out the thread for Docetaxel in "going through treatment>chemotherapy>Docetaxel" - it doesn't look a fun place to be!

[busybeeS]

Hi gillyb. My oncotype score came back as 27, so I made the decision to have chemo. The predict is quite a simple tool and doesn't look at as many factors, though my score on that put me in the chemo recommended bracket with a higher % than the onco score.
Wandestrong - I'm having 6x FEC as well. I have been ok on the 1st treatment - 2nd one next week. I went for a review yesterday and the nurse said the only side effects guaranteed on FEC are hair loss and fatigue. The fatigue is cumulative, so will build up over time though I'm still ok on day 16. I can feel it when I have to walk up hills but it's not stopping me from working and going about the usual daily routine. You have your hands full with the children, so make sure you ask for help when the fatigue does kick in. Wishing you all the best.

[AnnieA]

Raitchr, I am on my first cycle of EC at the moment and I have 5 daily injections to take which indeed have made my bones hurt xx

[gillyb]

Hi there my heart goes out to you especially as you were pregnant and having an op for Bc!  I have just had a lumpectomy no nodes involved and my onco score has returned at 30! SEEMS THE ONCO IS RECOMMENDING CHEMO and I have been researching this all day.

HAS ANYONE USED THE SITE CALLED PREDICT ...IT GIVES SURVIVAL RATES DEPENDING ON THE DETAILS U PUT IN...IT'S AN NHS SITE.

[Raitchr]

AnnieA I am 3 x FEC and 3 x T, the T one is the hardest as in it knocks you off your feet for about 5 days from what I can work out on other threads. I am sure there are daily injections for 5 days. It makes your bones hurt. I have read that the taking hay fever tablets with Loratadine helps to ease the pain, along with paracetamol and hot water bottles. I have been following the March and April chemo starters to stay ahead with info.

[AnnieA]

AnnieJ thank you for your reply. I guess it's just playing the waiting game then to see how we react. Glad your doing well so far 🙂
I haven't got a follow up with my consultant through yet but I'll be sure to ask similar questions to you xx

[treehouse]

Well done you! My husband has done the same about pics of Sinead O'Connor etc. Three cheers for those amazing men. 🍻 😊

[misyangel]

Hey treehouse he did amazing, I cried a bit when he first cut a chunck out my hair then I was fine, the verve lucky man was playing on the telly just before we started and I kept making him rewind it back and played it on loop throughout as it made me feel happy. It took about an hour to complete,  My husband choked up twice throughout and said it was the hardest thing he had to do but he said I look hot with no hair. He then preceding to find me pics of lots of women with their head shaved. I have a twin sister and my mum who are waiting to come see me from  work and I know they must be nervous as to how they will react when they see me for the first time with no hair. I think it is really hard on our families to watch us go through this as they feel so helpless. 

[Anniej]

Hi Annie A, I am on the same as you. I had clinic yesterday and my consultant actually used the word 'tough'. I am trying not to stress about it at the moment, and am just determined to get through the first three EC's. I am seeing him again in six weeks when he will assess the situation again. He has assured me that any treatment will be appropriate and if I am unable to tolerate it then it stops. I told him I wanted drugs big time re T, I'm not into pain, and he said he wasn't either! Don't know if this helps, Annie, but everyone is different and I suppose until it happens we won't know.  😱  X

[treehouse]

Hi misyangel. How did hubby cope with that? Mine has also offered when I am ready. They are watching us go through so many changes. I am massively appreciative of my husband and his support. But I don't look like the woman he only married less than 2 years ago.

[misyangel]

Wandestrong so sorry you are going through this and at 34 weeks pregnant when you had lumpectomy.

it is a week today since I had first chemo and I feel back to my old self me and my husband shaved my hair off today, I had long blonde hair before and I was dreading losing my hair but i have to say the relief after shaving my head is amazing and I just feel like it was always there in my head waiting to happen. I have found I get very tired easily and I keep feeling like my blood sugars are low but feel fine again once I have eaten.  

7 more to go. 3 fec and 4 tax 

[Mai7]

Treehouse, I was very lossy yesterday but not noticeable yet except for a small thin patch on top. The nurse warned me yesterday that I would lose my hair in approx 48 hours after my 2nd FEC and no cold cap. I slep in my soft bamboo beanie cap last night as I didn't want to wake up with my face buried in a hairy pillow. I've shed less hair today than yesterday so anything could happen over the weekend! How many treatments have you had? Did you cold cap?

[treehouse]

Thanks Mai 7 I will add that to the list to ask. Just thought I would share, my mum has come out on a rash on her neck and we think it is a reaction to a new scarf. I have recently bought loads ready for hair loss so I am washing them all now. My face is very sensitive already and I have spots on my scalp but still no hair loss. Anybody lost any yet?

[AnnieA]

mai7 glad to hear your coping well, I seem to be too. I've only had one cycle of EC but I am too dreading the T part too 😕 xx

[Mai7]

Hello again Wandestrong, good to hear that you and baby are doing well after such a challenging time. I've coped with the FEC really well and have continued to work full-time from home, thereby avoiding exposure to germs. It's lovely that you have good support from your Mum too as she can share your pain in a way no one else can.  I don't know if you've read full history on this thread but there are many tips to find and you can have fun reading our story's so far. Important thing: aim to drink 2litres of water the day before, on the day and the day after treatment to help with side effects and flush your bladder through to avoid irritation. Put some cranberry juice in your water too to assist this process. My strategy is to eat healthy little and often and avoid fizzy drinks  in the first few days to reduce risk of dehydration. I've gone 100% teetotal. Take care. X

[Mai7]

Hi AnnieA , I'm on 4 rounds of FEC followed by 4 rounds of T so the same cocktail as yours but you don't have the F part of the FEC, just the EC, if that makes sense. I'm coping really well with the FEC Combo but dreading the T part! 😕

Treehouse, are you on T now? You could try taking Loratadine antihistamine which is recommended for bone pain but check with your Oncologist first. My Oncologist was happy for me to take it for eczma and allergies.

wow, I've edited this thread about 3 times as I'm getting people mixed up! ......and I thought my brain function was good before! Maybe a distorted perception of my abilities (apologies in advance for any incoherent babble!)

[treehouse]

I think it depends on your definition of harsh. I know my Herceptin and perjeta are what the nurses are most worried about. I have regular heart scans for that. But I think the T seems to be giving me the muscle pain. I will talk to onc next Fri to clarify.

[AnnieA]

Not that all treatments arnt harsh, I didn't mean that to sound as it did. I just see a lot about the T part that's all xx

[AnnieA]

Is the T part meant to be the more harsh of the treatments? Xx

[treehouse]

The T part is the only part of my cocktail I share 😊