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April 2018 Chemo Starters

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Re: April 2018 Chemo Starters

Thanks Euby and love your food ideas! How did your oncology appointment go? X
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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

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
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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...   

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Re: April 2018 Chemo Starters

Thanks Christine, I think I have decifered your code! 😂
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Re: April 2018 Chemo Starters

Sorry i am using my phone. Lots typo
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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.
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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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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
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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

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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
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Re: April 2018 Chemo Starters

(WARNING LONG POST - Must have needed to my journey out there into the ethos).

 

Hi Michelle

 

Good to know what the options may be If I need them, beleive I already have hydrocortisoe cream for another skin condition...lol

 

I have not yet finished my treatement, I have an appointment with Oncologist wed who will check my radiotherpy reaction and also discuss next steps with me.

 

So I was diagnosed with TNBC in March which is grade 3, no staging was offered by my medical team, The Tumor was around 4 - 4.5 cm and I had no node involvement. My treatement plans was 6 cycles of FEC-T, followed by lumptomy follwed my radiotherpy.

 

I found the FEC and Docetaxel affected me qute differently.

 

Major symptoms of FEC

Nausa

Alopecia

Fatigue

Forced Menopause

Yeast infection Oral

Constepation

 

I would have one bad week and noticably recover over that week to an almost normal state within 7 days. It was not pleasent and although I felt quite clearly ill as a result of the treatment it also felt managable in some ways.

 

Major syptoms of Docetaxel

Fatigue

Bone & Joint Pain

Hand/Foot Syndrom (blistering of soles of feet)

Chemo Brain

Neropathy

Forced Menopause

Yeast Infection Oral

Constepation

Nail damage (in the end lost 2 of my big nails - not sure if they grow back again?)

Low mood

 

I would have a delayed response to the Doxcetal where it would really not start to impact me until 2 days and I found that it would take at least 10 days before the SE started to ease and was only getting back to normal in time for the next cycle to start. I felt quite clearly ill as a result of the treatment and not so managable in many ways. I would describe the experience as turning into a cat, sleeping, waking and eating and then sleeping, waking and eating. TIme seems to travel on by quite quickly.

 

My Feelings on the total ecperience to date

 

I felt an immediate response in my tumor to the FEC treatement but "felt" that there was little response to the Docetaxel treatements. Over time I started to get breast pain and "felt" as if the tumor was getting larger again, this could all easily be inflamation and also anxiety etc. I found the first Docetaxel to be quite impactful, the 2nd to be less so but still severe and the third one was the worst and I almost feel like I have not recovered from that one (19th of August 2018)

 

Current most noticable SE

 

I am still in significant pain within my joints and muscles,

Still struggle with getting up and down, moving around or standing for long perods at a time (though it is improving generally but slowly).

I have neuropathy,

Menopausal symptoms,

Chemo brain and low attention span

Low mood or lack of motivation on occasion.

 

I feel my SE are probably quite typicl of most people but outlined them as I was finding it reassuring to here see the journeys of others and it helped me to normalise what I was experiencing.

 

My lumpectomy has came and went, removed 31mm tumor with clear margins and without many complications so far and I feel as if it is not too invasive a procedure for me luckily - (probably due to no Lypmh node involvement). Ironically I do however feel like my lump is still with me as the void was filled by fluid that will  be abosrbed by the body as it heals over time.

 

Ongoing Treatement

 

As TNBC there are no homonal therpies or treatments. I unfortunately did not have a complete pathologcal response to the FEC-T and as the onccologist put it "Did not respond as well as hoped" to the Chemotherpy so have been advised I have to a further 8 cycles of oral chemo drug Capecitabine.....which kind of knocked the stuffing from me as a further 6 months of chemo does not fill me with joyful anticipation.

 

Overall I remain positive and just trying to relax and practice self care taking it all one step at a time. Been advised that it can take up to 12 months for the SE to diminish from Chemo so just keeping on kepping on Smiley Tongue. I have yet to meet or come across another indivdual in a similar situation as me or who has taken the Adjuvant Capecitabine for TNBC after receiving Neo Adjuvant course first. Sometimes I think that might be the hardest part.

 

I really should start getting my questions ready for meeting on Wednesday.....this is inspiring me! Thank you for asking about my journey I really do feel sometimes I need prompting in some ways!

 

Hope everyone is having a good week and coping with their SE and sending you all some love and luck, xxx

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Re: April 2018 Chemo Starters

Hi Euby
It’s good to hear that the comments here have helped you a little.
Thanks for your input re rads. That is exactly the same for me my armpit hurts and under the breast. I had a review yesterday and they gave me hydrocortisone cream to help but I am not allowed to put that under the breast, presumably because the skin is thinner there.
Have you finished treatment now? How did you find hemo and do you have any lasting SE’s? X
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Re: April 2018 Chemo Starters

Hello everyone

 

I wanted to say I am also an April 2018 Chemo started and although I did not sign up to the forum till recently just reading what everyone was sharing helped me with my journey a great deal.

 

In re to Michelle I am only recenlty finished my Radiotherpy on the 05/11/2018 and had 19 treatements. I have found that the fatigue did not increase much at all however my skin reaction is still developing over time. I had noticed almost no skin reaction until about session 14, it is worse in my armpit of all places and also under my breast, bascially in all of the flextures where the skin tends to be a bit thinner.

 

The medical team focus on if the skin is broken or not and was advised I can drop in any time and just ask to see a nurse in relation to my skin and they will check it over and dress it is need be.

 

 

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Re: April 2018 Chemo Starters

Yes we put a lot of trust in the doctors don’t we? Thanks Dorabel x
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Re: April 2018 Chemo Starters

It’s good not to have to know. I’m having zoledronic acid at 6-month intervals to discourage osteoporosis & bone cancer (hope I don’t get that!).  Just have to accept what the medics tell me is needed.  Know exactly what you mean by those tubes.  Only 2 more rads - way to go!  Hope you have the most minimal side effects possible.

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Re: April 2018 Chemo Starters

Sorry Dorabel I don’t know what a zoledronic acid infusion is, will you have to have it regularly or is it a one off? I have herceptin every 3 weeks but fortunately I get to have that in a tenovus lorry so I don’t have any association with chemo there. I wouldn’t like to be treated in the chemo ward again but I suppose I would have to get used to it. Just seeing those tubes of red makes me feel queasy!
Just had 18th rad only 2 to go!! Hooray! X
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Re: April 2018 Chemo Starters

That sounds really grim for you, Linda.  I was wondering if the effects of the anaesthetic are part of your sickness, even this long after surgery.

 

Do hope you are able to enjoy Christmas, Michelle, after daily radiotherapy - you’re right about this bringing home the enormity of what has happened.  My moment of this came when I was having a zoledronic acid infusion post-chemo but in the chemo ward.  Hated going back there and felt so sorry for the woman next to me because I recognised the chemo she was having and knew she was almost certainly about to have a bad time.

 

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Re: April 2018 Chemo Starters

No I finished chemo 9.5 weeks ago. I think it's related to the bad taste and dry throat though. I had my op 3 weeks ago nearly. x
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Re: April 2018 Chemo Starters

Oh dear Linda that doesn’t sound very nice at all. Are you having any treatment at the moment? Hope you feel better soon. X