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April 2018 Chemo Starters

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Re: April 2018 Chemo Starters

And congratulations on the new hair... Its such a treat isn't it.. I couldn't believe how thickly my eyelashes came back!
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Re: April 2018 Chemo Starters

Hi Dorabel, I finished 2nd August and I still have pains and tingling. I've been told neuropathy can last for anything from months to years as it takes little time for nerves to be damaged but a very long time for them to mend so I'm not expecting to be rid of the symptoms for at least 6months but more likely 12. For speaking with a few people who have experienced it I've concluded 12months I think is the best bet. X
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Re: April 2018 Chemo Starters

PS to website people - could there be an avatar with a short fuzz of hair?  Glory be, my hair has grown enough for me to go public with it.  I look weird but less so than before.  Have taken to wearing mascara for the first time in years, just because I now have eyelashes again.

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Re: April 2018 Chemo Starters

So sorry that you are having problems with taste, Michelle & Linda.  Docetaxel is evil stuff.  I had three courses of it and for quite a while, everything tasted awful.  Trying my favourite foods made no difference; it all tasted dreadful, even water.  The taste distortion did wear off, though, and I’m hoping this will be the case for you.  I’m not on herceptin, so I don’t know about its side effects.

 

My query is this.  How long is it before I have to accept that the neuropathy in my hands and feet is permanent?  Last docetaxel was at the beginning of August and while the pain is gone, the tingling remains.

 

Hope everyone is managing to avoid the colds that have sprung from nowhere in the last few weeks.

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Re: April 2018 Chemo Starters

No I don’t feel sick Linda. It does come and go a bit because some days I forget about it and think it’s back to normal then it reappears. I’ve got a cough/cold at the moment and I don’t think that is helping but my chemo finished almost 4 months ago so maybe I’ll mention it at my next appt. Let me know if yours goes x
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Re: April 2018 Chemo Starters

Michelle do you feel sick sometimes too? It's worst in the mornibgs. It should get better after 2 months so am monitoring it and will contact chemo hotline if not improving.
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Re: April 2018 Chemo Starters

Wow Reddi thanks for all the info! Those meals do indeed sound yummy especially as I am starving right now! I will look out for any workshops in Cardiff! Food is generally tasting ok it’s when I don’t have anything in my mouth that I get the horrible taste. I tend to suck on a sweet or mint if it gets to bad. I guess I just have to wait for it to subside. X
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Re: April 2018 Chemo Starters

@Michelle21 The founder, Ryan Riley, tends to announce events on a rolling basis, so although the next two are in London (6 Nov) and Walton upon Trent, Derbyshire (15 Nov), there will probably be more scheduled soonish. I believe he's working on a book but it wouldn't be published til 2019 or 2020 at the earliest, given typical publishing schedules. You might try contacting him via Twitter (https://twitter.com/ryanrileyy) to ask if they might consider setting up a workshop nearer to you.

 

The session I went to didn't have the apple crumble, which sounds blissful, especially as I have found baked apples with a strong focus on cinnamon have been a really nice, pleasing, and easy dessert option. (There are some recipes online for garam masala apple crumble that I might try out.) 

 

We did 3 mains instead: 1) pineapple prawn tacos (using a thin slice of pineapple as the taco "shell") and garnishing the cooked prawn with fresh sliced chilli (can be deseeded), coriander leaves, slivered spring onion, and lime juice; 2) salmon fillet coated with harissa paste and baked, with a side of fennel cut into matchsticks and made into a slaw using a bit of plain yoghurt and the juice and zest of a lime, all of it sprinkled with nigella seeds for a pop of visual satisfaction once it's on the plate; and 3) an umami-rich dish of puy lentils coaked with bay leaf and garlic, to which are added sauteed onions, spinach, butter, and toasted buckwheat, served with a drizzle of yoghurt mixed with miso paste. I make the salmon pretty regularly (I use store bought harissa and it's super fast), and I have done several twists on the lentils -- not yet with the buckwheat/miso, mostly because our pantry is packed at the moment. I can type up and share the recipes if any of them are of interest.

 

The general principles involve using umami, particularly by combining two umami-loaded ingredients (e.g., mushrooms and ripe tomatoes; miso and spinach) to help combat sensitivity to salts and metals, or by incorporating pineapple, which triggers the trigeminal nerve rather than relying on taste buds and olfactory bulbs, so can get around the issue that way. Ginger is similar, and I've found myself adding the fresh root to my cooking on a more regular basis as I've been noticing more salt/metal dominance on my palate. (I've not had any nausea during chemo.) 

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Re: April 2018 Chemo Starters

Thanks Gygi, I remember you mentioning this early on in chemo but there aren’t any classes near me and I don’t think he has a book out does he? Hopefully it will clear up in time x
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Re: April 2018 Chemo Starters

Hi Linda & Michelle I would recommend a cookery day with life kitchen. Ryan is the founder and he has looked at foods that help taste buds during chemo. We went and made peas and lentil risotto. Peas help a lot apparantly also vanilla and we made garam masala apple crumble. I think Docetaxel is a bit culprit. If you look up life kitchen you can find some ideas. Hope that helps Gigi x
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Re: April 2018 Chemo Starters

Mine started at the end of my last Docetaxol which was 20th July. Sometimes it is worse than others and it doesn’t effect how good tastes but if I’m not eating or drinking it’s just there in my mouth. I tend to suck on an extra strong mint or at the moment cough sweets. Hopefully it is from chemo it will ease off at some point. Let me know if yours changes at all x
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Re: April 2018 Chemo Starters

Michelle no not on herceptin. It wasn't salty just had no taste but now it is so salty I feel sick sometimes.
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Re: April 2018 Chemo Starters

Hi Linda yes I have a horrible taste in my mouth a lot of the time. I put it down to herceptin are you in that?i also had 4xT.
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Re: April 2018 Chemo Starters

Hi,
Does anyone have a very salty mouth after finishing chemo? Its 8 weeks now and makes me feel sick sometimes I think. I had 7 cycles of FecT (4 docetaxol). Its the worst se at the moment and I have just had my op last week. Thanks.
Linda x
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Re: April 2018 Chemo Starters

Hi Christine
It’s good that your oncologist had time to answer all of your queries and I’m sure that having a plan has helped you. I think having at the back of your mind that you will stop if the side effects get too bad gives you back a bit of control. I have told myself the same with Tamoxifen.
I would also describe myself as strong but there are no medals for bravery here. I think the important thing is to look after yourself. That is your mental and physical health. Counselling sounds like a good idea. I have thought about it myself but am going to do the moving forward course first then see how I feel. I don’t feel low at the moment but people say you may feel worried when treatment stops so I’m just trying to get a contingency plan for if that happens. I get what you are saying about hosp appts one of the worst parts of rads is that it is a daily reminder.
Loving all the zoo talk! I haven’t been to a zoo for ages. I’m very pleased with myself today, I walked up the highest mountain in South Wales! I did then have to have a sleep when I got home but I did it!
Have a good birthday on Monday Gigi!

Dorabel if you send me a message with your mobile number I’ll add you to the what’s app group and we can sort out a meet up
Xx
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Re: April 2018 Chemo Starters

Hi Gigi and thank you for your words. I am usually a strong person which is why this period of time has hit me so hard when i have been so upset. Doesn't make me feel like the normal me but i am taking steps in the right direction. My oncologist has also suggested i contact Haven and i have found there is one near Fulham Broadway tube station which should be easy to get to. They have welcome days and i am going to book into one and see what they offer. Looks like therapy aswell as yoga and complimentary therapy.

 

Time gets to be important and i am glad you got to London Zoo. I haven't been for a few years but my husband goes as he like to take to photos. He prefers animals in the wild but he has taken some lovely ones  there in the past. I am more of a fan of the Elephants but Penguins are cute too. My daughter has plans to go to Chester Zoo on her birthday on Saturday when her plans fell flat. I am sure that will be good too.

 

Have a happy birthday and hope you enjoy the rest of your half term. 

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Re: April 2018 Chemo Starters

Hi Christine I just read your post and you sound so strong. Having treatment can be so relentless and disheartening I agree and I'm glad you've found the strength to ask for some support. It's all about timing too isn't it and not being rushed and having a chance to ask all your questions and voice concerns at the doctors appointment helps but also that means more information to absorb, more decisions to make. Glad to hear your surgery is healing well x
I'm home with a really bad cold but yesterday accompanied my partner for a really early appointment and after we ended up going to London Zoo. I went 40 years ago and would prefer a national reserve next time (imagine!) It was amazing seeing the animals. We drove and parked outside the gates of the zoo and he bought me an emperor penguin cuddly toy (as I walk like a penguin at the moment!) My birthday treat (birthday is next Monday)
Half term has not lived up to my expectations of myself as feeling very poorly but that time in the sun yesterday looking at giraffes and lions and penguins (we were very lucky with the weather) has made my week.
Today intrepid explorer Gigi is off to the library.
Take care Gigi x
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Re: April 2018 Chemo Starters

Its been a busy week and my I wrote down all my concerns and questions for the oncologist on tuesday evening. Luckily she didn't seem too busy and I was the last appointment  so i wasn't rushed. We started with the fact the previous plan had to be changed due to my ovaries not giving up as they should. I decided the removal of my ovaries was not going to be a good idea for me. My surgery is healing well and more surgery down there would not be a good idea mentally as well physically. This means i will need zoladex 4 weekly for 2 years but she will be doing ECGs before the first and another 3 weeks later due to the risks as i am on other medication that can effect the heart in the same way. Then i have to start Letrozole a month later which again has risks but i can't take tamoxifen due to interaction with my other medication (and it didn't work for me last time as i had a reoccurence less than 2 year after the first diagnoses all those years ago). I am concerned about the risks and side effects but I have in my head that i will stop if it becomes too much and takes the risks of the cancer return instead.

 

I am having problems dealing with the constant reminders of cancer with the tablets/injections and frequent hospital appointments so i have asked for a referral to a counsellor. Part of it may be the hormones kicking in due to the period i had but she said down times can get worse on Letrozole so she agreed it was a good idea. I was brought up to keep emotions inside and asking for help was weak but i can't do that anymore. My daughter is of the other opinion and has asked for help in the past so her encouragement helps.

 

Sorry this is going on a bit...

 

On the subject of hair, I am still suffering with thinning of hair and it is very dry. I have tried all sorts of conditioners and treatements but it still looks a mess. Also i braved going for a bikini wax for the first time since the DIEP surgery and she said the hair came out really easily. 3 weeks later there is very little regrowth which at least saves money on waxes but does seem a bit odd.  

 

Hope every one is doing well and hope to meet you all.

xxx

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Re: April 2018 Chemo Starters

Great will do x
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Re: April 2018 Chemo Starters

Hi Gygi, good to hear you’re doing well, apart from the cold! I know about excess hair I had a few unwanted hairs sprouting out of my chin the other week. On the whole though I’m happy to have all my hair back. I even had a haircut the other day, but really so the short bits can catch up with the stuff that survived!
Gygi if you message me your number I’ll set up a what’s app group and we can discuss a destinationa nd date for meet up.
Fiona, Dorabel if you do the same too and anyone else who might be interested?
Thanks for yours Christine
Have a good day xx