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April 2018 Chemo Starters

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Re: April 2018 Chemo Starters

Well that must be a relief that there is no clot Gigi. Have a good rest this weekend and I hope you don’t have to wait for the heart test xx
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Re: April 2018 Chemo Starters

Oh Gigi, this must have been terrifying.  Thank goodness there’s no clot.  I hope you are having a good rest this weekend with lots of tlc.  

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Re: April 2018 Chemo Starters

Thanks guys after 3 days 16 hours in total no blood clot thank goodness. Back to oncology and have asked them to check my heart. Will rest up the weekend. Hope you all have a good one take care Gigi
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Re: April 2018 Chemo Starters

Oh dear Gigi that sounds horrible and a bit of a worry. Thinking of you and hope all goes well . Puts all my minor aches and pains in perspective.

All the best
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Re: April 2018 Chemo Starters

Oh Gigii you poor thing. Have you had regularl heart scans? I think the herceptin can cause problems such as breathlessness and palpitations. Good luck today, thinking of you x
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Re: April 2018 Chemo Starters

Hi guys thought I'd share with you as a little but worried. Been feeling so tired and started getting palpitations and breathless rang AOS on Wed after work and they advised me to go to A&E in case I has a blood clot on the lung. Not a massive one just a little one that needed to be sorted out ASAP. Went and got home at 1am this morning and had to go back all day today. Symptoms got worse but improving now. It might be the blood thinners they gave me. Horrible day but managed it and appointment for CT scan tomorrow. Bit worried so been up clearing up a bit and my cleaner comes tomorrow so at least at the end of the day the house will be tidy. Wish me luck. Will let you know how it goes x
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Re: April 2018 Chemo Starters

Thanks for this, Christine.  I’m not saying it’s reassuring that you went through the same thing - horrible for both of us.  Does make me feel less of a grumpy person, though.  Letter confirming surgeon’s 6-month check (at 10 months) arrived today.  

 

What was reassuring was to know that joint pain seems to be a side effect of what we’ve been through and that gives me hope that this is a side effect which will go.  I feel as though I should have a sign saying ”Sorry, I’m a bit slow” stuck to the back of my head when I am going up or down stairs, one at a time like a toddler.  

 

Herceptin side effects do not sound good.  A friend recommended sachets of root ginger & turmeric for making a hot drink.  It’s supposed to help reduce inflammation but even if it doesn’t, it tastes nice.

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Re: April 2018 Chemo Starters

Hi Dorabel. I know exactly what you mean. I have had to chase everything. Last week i had an apoointment with  my oncologist and was introdueced to the breast cancer nurse. I have not had one for the whole of my treatment and have relied on the macmillan helpline. She said she would ring on monday for a chat about my treatment but here we are on wednesday and still no call. I do still have contact with the surgeon and his team but he seems to be on his third PA this year and I am not getting answers to questions there either.

 

Gigi. Sounds like you are having a tough time. I am trying supplements for the Herceptin pains and was told turmeric is good. Haven't tried it yet. I find my leg muscles are very reluctant to work. Bending down or doing a stretch after a work out are nearly impossible and I feel like an old lady. I have had 12 of the 18 treatments, inculding the 4 during chemo, but it still seems a long way to go to the end of March. Should start the Letrozole next week as log as i don't have another period. New set of side effects i am sure.

 

Energy levels are still not brilliant but i guess i have the luxury of working around that. People think once the main treatment has finished that all goes back to normal. I am still a long way away from that. Hope the next two weeks aren't too exhausting and xmas will give you are rest.

 

xxx 

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Re: April 2018 Chemo Starters

Hi Gigi, good to hear how things are going for you.  It sounds as though you are recovering, despite the exhaustion.

 

I’ve just discovered how a person can slip through the cracks of the system.  Treatment ended a couple of months ago and then - nothing.  I finally rang the breast care nurse line yesterday and explained that I didn’t have an assigned nurse but was worried that I had been abandoned (do I have to get stage 4 bone cancer before anyone checks?).  As if by miracle, an appointment with the surgeon was arranged for this month.  I was booked into an end-of-treatment clinic (who knew such a thing existed? no one told me).  I was assured I would get an appointment for my yearly mammogram.  What a lot of target boxes finally got ticked!

 

What concerns me is that I doubt I’m the only person to whom this has happened.  Because I had no assigned nurse, it was no one’s job to look at my file.  If I had the early stages of dementia or didn’t want to make a fuss, zilch would have changed.

 

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Re: April 2018 Chemo Starters

Hi everyone, how's things? Been too busy and too tired to write but have been following the thread. Hope your skin has improved Michelle. Yesterday had Herceptin number 9 so that means halfway! Went to bed super early. Today feeling a lot better and it is my day off! Still need to get to that swimming pool, nice you have been Euby. Got my prescription goggles now just need to get a swimming hat and some energy and I'm there! Looking forward to being off over Xmas. Will be able to go then. I am walking the dog more but often with a limp. Just keep on going Gigi I tell myself you will get there! Pushing through. I don't think they realise at work how hard I'm finding it. Two parents' evenings and an inspection have wiped me out but I've made it! Only 10 more working days till the hols! Also this morning is the first my hair is not sticking up in a weird cartoon like pose. I think the top where the bald parts were has grown enough now. Nearly gave up the other day and chopped it all off but perservering and lots of scarf wearing seems to be paying off. It is growing as it's time to dye it again. Take care everyone Gigi
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Re: April 2018 Chemo Starters

Hi Euby. Yes i was diagnosed at 54 and was having hot flushes. Chemo stopped the periods and i thought that would be it but they still started again. Bodies are weird things and very unpredictable. I now have to have zoladex injections in the hope they will shut of my ovaries so i can take letrozole.

Hope you are feeling a bit more comfortable Michelle.
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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

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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
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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

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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?  

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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
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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

 

 

 

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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
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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?

 

 

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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.