Member
Posts: 15
Registered: ‎22-10-2018

Re: April 2018 Chemo Starters

Hi Michelle

 

It was great to swim again, It really highlighted to me how much bone and joint paint I am in. It felt so good to stretch out and not be in pain, I felt so light! I was advised to avoid swimming though until my skin healed (I risked it for a biscuit though - I could not resist the Jacuzi).

 

Sorry to hear about your skin Michelle and that I have not been on for a wee bit. I was never given gel just zerobase cream to pop on, so I do not think I am much help on that front. Though at the Beatson I was advised that they have nurses on hand for you to drop in and get them to check out your skin, was told no appointment was needed just to ask at the reception. I am hoping you had that support too? How are you getting on now?

 

A small update re the skin progression for your expectations really, my skin as well as peeling has become discoloured looks dirty rather than tanned. Can see quite a severe line where the old skin has peeled off and the slightly pinker skin was peeking through. The skin has stopped peeling but it is almost like a watermark of discoloured skin around. It is a little unsightly but I am assuming over time this will fade. Has anyone else had experience with this?

 

 

In other news......My period has arrived, aged 40 at diagnosis, last perod just after first FEC-T Chemo, last Chemo 19th July, started oral chemo Capecitabine on the 20th of November! I had been expecting a forced menopuase, as per the medical advice and been having all the hot flushes but there is no denying it, it has arrived. So good news for my bone health overall I guess. I do not think I will complain about not having a period again.

 

Sending you hugs and healing for your skin, x

 

Euby

Member
Posts: 591
Registered: ‎30-03-2018

Re: April 2018 Chemo Starters

Unfortunately the skin on the underside of my breast is still raw and sore and my under arm is sore now too. ☹️ In the plus side the skin on the top side is feeling much better now, the itching has stopped. I’m going back to the rads dept tom to try and get something else to help or at least some more gel and dressings.
Euby your mini break sounds very relaxing and your bhoona very tasty. Sounds like you are doing well at increasing your veg intake.
Hope everyone else is doing ok and getting ready for Christmas x
Member
Posts: 15
Registered: ‎22-10-2018

Re: April 2018 Chemo Starters

Hi Dorabel!

 

Hoping the blisters and skin is beginning to recover for you now Michelle.

 

My skin has darkened and started peeling away with healthy new skin underneath so although it looks worse the pain is diminishing. though I am still not wearing a bra atm. I hope this will be you soon Michelle, x

 

I was kidnapped by my mum for a mini break and had lots of relaxation, some naps, a little walking and lots of eating out! It was just lovley, beginning to feel like I need to be more active again!

 

In other news, made a bhoona from scratch, reducing all of the onions and tomatoes to make a gravy. It which tasted really yummy and added in lots of additional veg to increase my veg count further. Felt just like a take away but as I only used some spray oil and then water to prevent it sticking to the pan feel like I am getting all the taste in a healthy way!!

 

Hope everything is going well for everyone on here, x

 

Euby

Member
Posts: 127
Registered: ‎16-01-2018

Re: April 2018 Chemo Starters

I’m so sorry, Michelle, that you are having a hard time with the effects of radiotherapy on your skin.  Those blisters must be very painful.  I hope the gel eventually works.

 

Hi Euby, hope the chemo has gone ok this week.  Is your skin getting any better now?  

Member
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Registered: ‎30-03-2018

Re: April 2018 Chemo Starters

Hi Euby
Good news that the new regime is going to be easier for you. Although like you say, most are!
I hope you have had a nice break away with your mum, it’s so cold today did you go somewhere warm?
Unfortunately my skin is still getting worse with new blisters everyday. I have some gel and dressings but I’m fed up with it now. I really need to learn some patience! X
Member
Posts: 15
Registered: ‎22-10-2018

Re: April 2018 Chemo Starters

Hi Michelle

 

Not a runner at, preference is walking, swimming and dancing! But going to start small with Yoga and Tai Chi and then build from there. Once my fittness improves I might think about running.

 

I agree, I think we just need to take the plunge and call ourselves cured in one respect.

 

Got the new drugs it is going to be a much easier regime than FEC-T, most things are though!

 

my Mum is whisking me away for a little treat so looking forward to that. Hope your SE have now peaked and are beginning to improve.

 

Euby, x

 

 

 

Member
Posts: 591
Registered: ‎30-03-2018

Re: April 2018 Chemo Starters

Hi Euby
Good luck with starting chemo again on Monday, I hope that goes ok for you with the minimal amount of SE’s. I hope the laryngitis clears up soon too, I recently had a virus and it wiped me out. At least now I don’t feel as tired as I did 2 weeks ago! Having said that I’ve just woken up from a nap on the sofa whilst watching the rugby!
Good to hear your skin is healing well, mine has started to blister so is a little bit stingy now, because it is under my breast I’m hoping it doesn’t get infected.
I’m impressed that you are trying to get your veg upnto 10 a day, it’s jot easy is it? I am generally a healthy eater although probably eat too much sweet stuff and couldn’t honestly say I get my F & V quota every day. None of the doctors or nurses have offered up any lifestyle advice but although I’m not over weight I noticed my oncologistbis tiny and asked if I tried to increase my muscle:fat ratio would I reduce my oestrogen levels and she said it would only make a tiny difference. Do you run at all? I like to do half marathons and ran one two weeks before I was diagnosed and I think this really helped to reduce my SE’s. I have signed up to do that same half marathon in March so once my skin has healed I will start training again. If you don’t run but are keen to start I have heard the couch to 5k is a good program and parkrun is a great free event held in parks around the country every Saturday morning at 9am. My sister in law started running when she turned 50 and was quite over weight, she’s lost loads and has ran a half marathon recently. Runing is also good to build bone density.
It is difficult to come to terms with whether we are ‘cured’ or not. I like to think I am cured and no longer have cancer even though no one can say that for sure. I think everyone is different and we need to tell ourselves whatever gets us through. I find it strange when I read about ‘survival’ rates it sounds so dramatic, but I guess as you say that’s just how it’s measured.
As I said I hope you stay well on Monday and the weeks that follow. Let us know how it goes x
Member
Posts: 15
Registered: ‎22-10-2018

Re: April 2018 Chemo Starters

Ooo also Oncologist advised that she would be surprised if I did not still have bone and joint pain at this time so feel quite positive about that. Neuropathy can take up to 2 years to improve ....eek, but most likely patients start to see an improvement 3 - 6 months after!

 

I have enrolled in a Live Active initative we have locally to get more active. Also looking to start weight bearing excercise to help mitigate Osteoporosis onset. Onccologist advised that they will wait till 12 months after my chemo before considering me Menopausal and take things from there but that as I am realy focusing on healthier eating and excersise I am doing the most adventagous thing already. However she suggested I do take VIT D as a suppliment, so will do. I am not huge fan of suppliments but she advised this is the one we struggle to get from our diet the most so giving that a go.

 

Has anyone else received lifestyle guidence from their team at all?

 

 

Member
Posts: 15
Registered: ‎22-10-2018

Re: April 2018 Chemo Starters

Can you tell I am trying to increase my fruit and veg to 10 day too! Mixed suscess so far!

 

I have managed to avoid most processed meats, and probably reduced meat and chicken consumption to 3 times a week, but feel I have been processed carbing out rather than managing the whole veg instead.....keeping on with it though.

 

I have a bout of laringitus from nowhere currently - need to stop talking so much!. My skin has started to peel from the radiotherpy (underarms and also under breast - I had a spot of Psoris there which seemed to break down) but there is healthy skin underneath so it seems all good to me! The pain and tenderness is reducing already from the skin, so have my fingers crossed for you that it will be similar.

 

How are you finding things Michelle, how is your fatigue and are you finding that your skin reaction is still progressing? .

 

Oncology appointment was ok. Got my bloods done there and I start chemo on Monday hopefully. In the appointment I asked a few questions but did not learn anything more than I had already found out for myself. I had seen a post where someone had said they had only 1 in 10 cancer cells left alive so asked if there was any info like that on me. I alreadyknew I had a partial response and the measures for that and was advised pathology wise tumor inspection reveled that over 50% of the tumor was necortic but nothing more specic than that. I asked about chances of recurrance and was advised that they do not measure this as such, just the survivbility rate in 5 years time using the Predict model and as I had neo adjuvant treatement this data was not capturered. I had already found predict on my own so as long as measured my staging correclty I have an idea of the figures relating to that. It has brought into focus what I knew already that we are never really considered "cancer free" even "remission" is not deemed that. Might seem a bit doom and gloom however it was something I was wrangling with as OH kept saying remember you no longer have cancer (after the surgery) and I had niggle but no one has said that to me claearly. It is sometimes a challange to brace that idea. I am not pessimistic just being very literal. Logically I know I have had curative treatement and chances are good at least over 80% of 5 year surviability however we all feel and have worries and anxiety and feel this will be with us for quite some time.

 

Best thing about my oncollogy appointment was in the waiting room I met another lovely lady with her little baby who I had seen near the beginning of my cancer journey looking so well and with lots of hair. I found out she was also TN and is on the treatement I am due for. She had a parital response and asked for the treatement (as a nurse - she knew to ask). She explained the side effects were very minimal for her so that is great news for me, I did not realise but I think that had been weighing on me a great deal as I felt very upbeat and relieved. Trying not to worry about the fact that I was automatticaly offered the treatement that she had to ask for and what that means but going to focus on the positives instead.

 

I think I have been too much socliasing this week and should probably try and slow down a little but so determined to get my activity up.....been far too sedentary for far too long (including before the diagnosis) and really want to do my bit to fight and improve my chances.

 

 

Member
Posts: 591
Registered: ‎30-03-2018

Re: April 2018 Chemo Starters

Thanks Euby and love your food ideas! How did your oncology appointment go? X
Member
Posts: 15
Registered: ‎22-10-2018

Re: April 2018 Chemo Starters

Yay on ringing the bell!

 

Congratulations on being finished this part of your journey Michelle.

 

2 easy quick additions for your 10 a day

 

1 glass of fresh juice (150ml)

2 tablespoons of raisins (add to breakfast ceral/porridge or desert)

 

Some other inspriation that may work for you (depends on your taste)

  • Have a small 1/2 bowl of soup as a starter in your daily meals
  • Your fav Side Salad is great in summer months
  • try making a homemade "colslaw"
  • Load up on those pickeld onions, beetroot, saurcrout with hot meals.
  • Add lentils to any mince dish you make as this counts as veg as well, (spag ball, cottage pie)
  • Add Chickpeas or your fav beans to stews, chillies and currys
  • I love fruit and reserve this for eating as snacks throughout the day, however there is nothing quite like a nice fruit salad either for breakfast or desert!

 

Hope there may be something new in this to inspire you,

 

Euby, x

 

 

Member
Posts: 591
Registered: ‎30-03-2018

Re: April 2018 Chemo Starters

Thanks Christine, that makes sense, I’ll have a read of their site. We are all supposed to eat 9 fruit and veg anyway but as it is enough of a struggle to get the nation to eat 5 a day the general consensus is that 9 would seem too unachievable!
I had my last radiotherapy today and rang the bell afterwards. Another thing ticked off! I start Tamoxifen tomorrow let’s see how that goes! X
Member
Posts: 149
Registered: ‎19-04-2018

Re: April 2018 Chemo Starters

Sorry that was so ridiculous bad. I was in a hurry, no glasses on and using my phone.

 

Should have read... The diet info came from the World Cancer Research Fund.

 

I am trying to see what i can and can't eat to make my diet more healthy. Not allowed vegetable oil or sunflower oil so i have invested in an olive oil spray and a coconut oil spray to see how that does. Not allowed margarine but i am allowed butter but not great big chunks. Need lots of fruit and veg. I was told 9 portions a day which should be 3 fruit and 6 veg and a total of 30 different ones in a week. Now that is a challenge...   

Member
Posts: 591
Registered: ‎30-03-2018

Re: April 2018 Chemo Starters

Thanks Christine, I think I have decifered your code! 😂
Member
Posts: 149
Registered: ‎19-04-2018

Re: April 2018 Chemo Starters

Sorry i am using my phone. Lots typo
Member
Posts: 149
Registered: ‎19-04-2018

Re: April 2018 Chemo Starters

The dirt ifo came ftom tbe world cancer tesearch funf. Have a look at the website but that is all cancers.
Highlighted
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Posts: 591
Registered: ‎30-03-2018

Re: April 2018 Chemo Starters

Christine your day at Haven sounds great, I wish we had one nearby. I’m really interested in the diet they recommend as I have been trying to research a post cancer diet but it is difficult finding reliable source. All I seemed to have turned up is reduce if not cut out animal produce. Where did Haven get their research from donyou know? If they gave you any info I’d love to see it when we meet up if that’s possible. Or if there are any websites that they gave you? No sugar, oil or alcohol does sound very restrictive I know exactly what you mean we still have to live!

I had a horrible rad session yesterday, they couldn’t line me up so I must of been lying there with my arm up for almost half an hour. It was painful but also I felt so undignified lying there with my boobs out being poked and prodded, and so vulnerable and out of control. To top it off tears started streaming down my face and I felt embarrassed as I got up and left.
Today is the last one, hopefully it will go much more smoothly that yesterday. I have a couple of friends who have been so supportive through all of this coming to ring the bell with me. My husband is away at the moment so that will probably be the extent of my celebrations! X
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Posts: 149
Registered: ‎19-04-2018

Re: April 2018 Chemo Starters

Hi everyone. Just spent the day at a Haven breast cancer centre learning about their services and how nutrition effects breast cancer. Very informative and a lovely group of ladies with similar experiences to chat with. The nutrition guidelines were based on research not funded by any food companies so totally reliable but very restrictive. No sugar, no alcohol and severe restrictions on oils. I will try to follow most of the advise but i need to live so will not follow it all. I have a one on one booked for friday to see what i need in the way if help.

Shattered but lots of information to absorb.


Hope you are well enough to celebrate after your last radiotherapy tomorrow Michelle. Great milestone.
X
Member
Posts: 15
Registered: ‎22-10-2018

Re: April 2018 Chemo Starters

Hi Michelle

 

Thank you for your kind thoughts will let you know how I get on.

 

Had a little look at May thread JaqB has particpated in the ROSCO Trial which is why the chemo was split into two sessions. I beleive the purpose of the trail is to try and find out if they can find any links between tumor types and response to the two types of chemo in case they only need to treat with one.

 

However noticed that another lady had TNBC and she received a different Chemo regime altogether from me. I beleive I may have been a little unlucky in timing as I beleive the NICE guidelines may have updated at some point through this year and I may be one of the last sets of patients with TNBC to receive FEC-T rather than a regime that includes the Capecitabine in the first place. It is one of the things I will be asking my lovely oncologist about tomorrow.

 

Yay for last Radiotherpy treatement *rings the bell* time to celebrate I think!

 

Euby, x

Member
Posts: 591
Registered: ‎30-03-2018

Re: April 2018 Chemo Starters

Hi Euby, thanks for sharing your story, it sounds like it has been cathartic for you to do so too which is a bonus. I think a diagnosis affects everyone differently and it can take different lengths of time to come to terms with various aspects. I remember my mum asking me a couple of weeks after if I’d come to terms with it now and I said I would never come to terms with it. In some ways this is true I still find the whole thing surreal and wonder how it happened but on the whole I guess like everyone else I’m just getting on with it.
Sorry to hear you are still struggling with stiff joints. I’m pretty sure there are a few on here that also suffered with that SE but it is not a SE that I experienced. Again neuropathy is definitely experienced by a few here including me. I didn’t actually notice mine until I had finished chemo. I wouldn’t say it is painful but most noticeable in the mornings.
That must have been a blow to hear you are having to go through chemo again. I think I am right in saying JacqB on May chemo thread has had chemo, surgery and then having chemo again, although not oral chemo. Is the oral chemo as harsh as the infusions? I think taking it one step at a time sounds like a good plan.
I hope tomorrow’s appointment goes well, let me know how you get on. I have my final radiotherapy tomorrow which is not a moment too soon! Right I’m off to the pharmacy now to pick up yet more drugs to put into my body! X