Shadow in chest is recurrence
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Thanks for checking in guys. Still struggling with sinus issues and am trying nasal rinsing but I'm not very good at it. My eyes are stingy and tight so I'm thinking its viral. On new antibiotic now. So unfortunate that in not going into this feeling my best. However I have eaten well and kept active mostly on this run up,
Herceptin and Perjeta tomorrow with a 6 hour watchful wait so we are staying in a hotel overnight rather than a drive home after the treatment.
Fri is chemo and cold cap!
Couldn't have even got this far without my friends on here.
Much love to you all.
Liz x
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Liz I'm in your pocket through your chemo and the rest of your journey. With all the wonderful people on here I think your goung to need a big basket to put everyone in wishing you well!
Give yourself some much needed down time and visits with friends and family. Support really helps while going through such a difficult time. Stay strong and keep fighting! Hugs
I wish everyone good health and happy times. Summer is coming so get out and enjoy the beautiful weather. Sunshine makes everything seem better.
I start physical therapy Thursday. I can't wait to start. The phantom pain is awful and constant. I'm praying the mirror therapy really helps. I see my oncologist Friday. As muchas I hate to I'm going to ask if i should do 1 more round of chemo to be sure to get any lingering cancer cells.
Today is a beautiful day here sunny and 80+ so I'm outside enjoying the sunshine.
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Diane, you truly inspire me and I feel you will all be with me tomorrow.
In other circumstances tomorrow's trip would be fun. York is a beautiful city and stopping in a nice hotel almost feels like a cheeky break away with my hubby.
SSin UK and Ioana- thank you especially for the dietary advice. Rainbow plate and plenty off water.
So thankful to have you all and yes I need many pockets as I know you're right there!
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Hi Liz,
I'll be thinking of you tomorrow. If you haven't already, be sure to check in with your MO on any nutritional supplements. You will want to avoid anything that could protect the cancer cells.
My very best wishes to you!
LisaAlissa
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hi Liz,
There is ALWAYS a good excuse to enjoy a cheeky hotel week/end away.
The stories I could tell you...but we both would need more wine than what your sinusitis allows you too😉
I have wondered Claire - do you write ? because there are some great "moments" on some of these posts, so much food for thought. There is much warmth and comfort in this thread - the heart of which is your courage and wisdom Liz. Invincible thread ...tying up all those pockets...
Claire - my gut - I have one of those too 😉 - tells me you will do fine on Afinitor, the Europeans are keen on it and by the time (if) it "plays" up abemaciclib should be out.
But my gut is a place full of hope and hugs!!
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Thinking of you today, Liz. x
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Hi Liz - checking in hoping you are ensconced in a cloud of pillows and comfortable. We have a true spring day here - sending you one of my orchids.:)
Your pal in LA
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To all who have followed me and cared:
Day one- Perjeta and Herceptin. Caring, excellent male nurse called Jin- the irony was not lost on me! Quiet ward, warm atmosphere. Constant support of ancillary staff with drinks, sandwiches, fruit. I drank constantly. Infusions went without hitch and then a long 6 hour wait for any reaction. One glitch: 39 year old lady reacted to Taxotere next to me. Nurses came running, curtains closed and talk of oxygen. Brought under control quickly though. In tears as this is my fear today.
Left at 6.30pm Got to hotel which is within site of York Minster. Speedy check in but I hardly slept due to steroids and some berk playing music at 2am. Complained and it stopped. We ordered dining in room and my appetite remains excellent but I ordered soup and a salad and that was enough. Breakfast was eggs, beans, mushrooms and toast. Hope I won't regret it but it's the emotional benefit of retaining normality whilst eating sensibly. If this becomes a problem I can change it.
I think I've had a mild allergic reaction though as this morning my face and chest are red. Going in now though and it's eased so we will see what they say.
Today will be the marathon following the walk in the park. I love you dearly x
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Hi Liz,
I'll post more soon but if you open - try and suck on a ice pole ( like a lemon flavoured or what ever) or very cold drink while you have the infusion...same principle as cold caps - might prevent you from any potential mouth ulcers
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hi liz great to read you started treatment.
Good feeling to read your posts.Yes york is a wonderful place to be .York minster wall walk is super..as aussie visitor really enjoyed viking centre and museum
big healing vibes from Bright
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Hi again
Home safe. Taxotere went ok with no reaction. Just want it to work now.
Glad to be home with my kids.
I'll keep in touch. Bright- yes York is fab x
Liz x
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Liz - so proud of you! I sent good vibrations your way yesterday.
What is your timing between infusions and how many are planned? You should respond well, those are powerful meds and you are a powerful lady with loving support. Please rest and drink lots of fluids to flush those toxins out. Maybe try that Ice pole Ioana is describing. Plus using cold caps should keep your hair! Claire in sunny CA today.
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Hi Clare
Thank you. I had you all there with me and was thinking of you all and my family know how you have supported me and are in awe!
I go every 3 weeks. Unfortunately cold cap was not for me. Too much at the same time as coping with my anxiety of reaction to Taxotere. Yesterday during my targeted therapy infusions, the lady next to me reacted and it really upset me. I'm disappointed about my hair but it was the right decision for me and I will be brave.
I am practising mindfulness and am so hoping it works.
Hope you are well. How is your new tx going.
Xxx
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hello Liz,
Hoping you are not having to many side effects for the THP....and wishing you a gentle week.
At least the first one is down and you are home in the safety of your nest.
Hugs aplenty,
Ioana
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Hi Liz - I posted this Sunday in the Ibrance thread, but want to share with you and my bc friends here. This what I think of our cancer with a nod to Dr Seuss:
I do not like you cancer spam, I do not like what now I am
I miss my hair and moving fast, its crazy cancer how you last
I do not like you in my chest, I wish you'd find another nest
I do not like you in my rib, I really hate you lest I fib
I do not like you in my back, I wish you death via chemo attack
I do not want you near my friends, and wish you now a speedy end.
(()) Claire0 -
Hi ladies,
Great poem Claire!
Just checking in to say it's day 4 and slightly better today. Yesterday was horrible. Trying to stay one step ahead of SEs but ended up at ER on Sat night for red flushing and breathless. Queried DVT but they think it is chemo.
So far doing well but hair issue to face yet and I keep thinking will I come out of this phase ladies?
Love to you all x
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glad to hear from you , Liz. I suspect a lot of us here have been thinking about you. And yes, you know the answer to that question yourself. Time will move on and this will pass. You will come out the other side. Keep the faith for all of us on these boards. X
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Hi Liz,
I am sorry you had a rough week/end.
If it's three weekly you will now have two weeks to rest - find something to do - write, walk, see friends.
Please do not spend too much time alone.
Hugs aplenty,
Ioana
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hello Liz,
How are you going??
I suspect you are doing it pretty tough on your current regimen...bugger.
I love Claire's poem.
I have had a horrid week so far in some aspects and are bracing myself for the worst.
I have had for about 6 months now right sided rib pain and some pain T5-6 - it's ithe weirdest thing - not severe - just nagging and not wanting to go away...I was so hoping I would shake it.
Just had a Bone Scan. So will see what and if I light up.
I also have the flu - care of my son. And of course it is my first week back at work. I love what I do and ended up doing an Emergency Caesarian yesterday - a young boy was born to a very nice couple. It was as always a privilege to be part of it.
Well I guess it is what it is.
During chemo this was (it is borrowed) my mantra...
" when you walk, walk. when you eat, eat"
Healing vibes to all
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Have PM you Ioana. I'm late responding on this thread- been a rough few days.
Hi everyone- how are you all doing?
L x
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Hi lovely Liz, please rest and enjoy the rest of the week. I assumed your silence meant you were having some rough days with SE's. ugh We have all been there. Please treat yourself gently. Have you tried a silk pillow? How is the hair doing? Ioana - I am sending you good vibes not to light up and get over your untimely flu.
Do not go gentle into the good night, fight the rib pain with some meds or vitamins or both. I had an IV of vitamin C yesterday - and I really feel better, plus I peed a lot which I think gets us rid of bad cells. So stay hydrated! Sending warm thoughts to all ~~~Claire having a sunny day in LA and driving to UCLA for a lung drain in 1 hours
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Hi lovely Claire
Loving and appreciating your post tonight. I went off radar for a bit. Finding it tough to be honest. The thought of another 5 at least- yuk yuk and double yuk! Yet I know you guys have done it/ are doing it and have passed onto a better phase. I keep asking this but will I have better times?
Eating raspberry jelly just now. Those who know me will worry if I stop eating
Hope your lung draining is gentle. Didn't know you were dealing with that- sorry x
Finally, good old Dylan Thomas. His poem has certainly inspired many.
Ioana- we're here for you my friend.
Di- you ok Hun
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Hello, Everyone. I just read through the last few pages of this thread and am feeling the love. Excellent poem, Claire. Jackboo, you don't have to do all five at once. All you have to do is today. Then do that again tomorrow. And so on. And you will arrive at better times.
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Hi Shetland,
Good advice. I am going day by day. Have nausea and the big D and now Day 7. Just rang the ward for advice. Zero life at moment.
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YES Liz you will have better times.
Meanwhile tell me about Dylan.
How do I know ? Haven't we established by now that I am all knowing 😉😛
I guarantee it.
Mouth ulcers - yogurt, bicarbonate ( 1 tsp in 20 most in water horrid taste so use a cotton bud and dab away) propolis mouth wash or Biotene, and I bought one of those water flossing machines so only used baby toothpaste gently.
Claire - thank you - with are with you on those drives to UCLA. To be honest I thought something was up on your drug change. Hope Afinitor is gentle on you and fierce on the beast. A silk blanket sounds divine - I have a silk sleeping bag undergarment for my Tasmanian hikes but not a blanket. I shall look for one.
Flu improving - I did 4-6g of Vit C a day, I am not suggesting it as scientific it's crazy Russian thing (not to mention my usual friendly handful of supp), as to the rest I will know and post in a few days. I have been drinking lots of herbal tea since last year: ginger and lemongrass, linden, chamomile, rosehip. Not too mention green tea and roibos.
Liz - how is the book going - come on you have come across the greatest bunch of characters - make it as dark and gothic as you like. And share....I am a dreamer and actually quite serious.
Hugs to all
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ok just noticed the nausea...
Dry chips - not joking - a few at a time - will cut the nausea for about 20-30 minutes then you start again
Also are you on Zofran ( ondansetron 4-8mg sublingual 8 hourly ) ?
Finally diarrhoea - Imodium
Keep hydrated - we are all going to turn into fountains - all that water
Can you sleep Liz ?
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Ioana,
Glad you have posted. Was wondering how you were. Pleased flu is easing.
Dry chips- I think we call these crisps here if it's same product. Chips here are fries, eaten best with fish- oh my they are yum. Used to be the British national dish but curry has overtaken that in popularity.
Nausea- nurses sent me home without any sickness meds because it is uncommon on Taxotere. Had nothing IV either. Will eat as you suggest- little and often.
Big D- on Loperamide and it seems to have eased. Sorry- you didn't need that info! Hoping to nip all GI in the bud as this is partly why I'm a bit down.
Loading dose- was told today that tx number one is a higher dose of H& P. Wasn't aware of that so perhaps I will fare better next time.
Dylan- Welsh poet. Talks about how differently men face death. Bit of a gloomy subject really apart from the defiant line "rage, rage against the dying of the light"- this is pretty much what we are all doing on this forum.
Claire- hope sun is still shining on you my friend!
Stay close guys
L x
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Oh and my cognitive function seems to be suffering so I apologise now if my posts are a bit jumbled up!!
Ha- my excuse anyway x
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Liz - I had great news at IR yesterday - my lung was empty, just a bad cough. I start Afinitor next week due to T8 and it's rib lighting up, along with some uptake in my liver. My insurance finally called in the new meds, and so I change next week. FYI my mum was an English teacher (I thought it was so boring), one summer she gave me a choice; read the collected works of Shakespeare or 19th century poets. I chose the poets, turned out she had done the same in college. So...I borrow from some of my favs like Lord Byron, WB Yeats and the occasional Dylan Thomas. And we all need a little light and love from those talented wordsmiths.
Ladies please feel better, stay hydrated and give into some gentleness like a silk pillow or blanket. I love my silk blanket, keeps me cool or warm depending on my many varying temps thanks to AI's. A little overcast here today, but sending kind thoughts to all - SP and Ioana much love today.
(()) Claire
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Hi Liz,
Yes crisps - crinkle cut - if you are heating any hot flushes you will be sweating and losing some salt so no worries about a few the packets.
Liz you NEED to get out of bed for 20 minutes out of each hour at least. Too much lying around just makes you feel Yuchi, my friend Yuchi. Just get out for a little wonder of 10-15 minutes then back to snuggle land then up again 😊😊😊
Loperamide is Imodium as brand name.
Liz routine antiemetic medication packages ( the onc centre pharmacy sends you home with a bag) on ANY chemotherapy should include:
- dexamethasone ( yes helps with nausea as well as reaction to drugs)
- metoclopramide ( unless you get a reaction to it !) - this is usually marketed as Maxolon
- !!! Zofran ( ondansetron ) sublingual best absorption and onset of action 4 -8 mg 8 hourly
Please get your GP to write those scripts - I would up tell them what is going on and ask them to prescribe ( you will armed for next cycles)
Also worth considering on Taxotere is a script for Losec ( omeprazole) - I know you don't have oesophagitis/gastritis but the taxol/Taxotere group can give indigestion as part of the mucosytis side effects so taking 10-20 mg at night for your chemo regimen is useful.
Long term ( by that I mean over 10 years ) Losec can affect bone resorption but I am only mentioning it if some smarty pants brings it up you will know it's super safe over 1-2 years.
Claire !!! I am thrilled your lung dried up - that is supper good news. Bloody wonderful - I want you. In St Petersburg!!!!
You are one tough lady and you mesmerise me with your composure and kindness. I have a good feel about Afinitor for you. I like your oncs thinking.
Among a myriad of other bits - I have been taking Ashwanganda for better concentration, clear mind and sleep. I don't take melatonin as I sleep well, its the clearer mind I would like, or the absence of the crazy daily need to multitask which for me does not work. Unless I am wildly vulnerable to the placebo effect this Ayuverdic herb is helping...that and Liz' rough sea imagery - I love the sea.
I have two friends from Uni ( we started in 1985) coming up from Melbourne for the week/end - I love them both dearly. Stay tune for what wine we will break.
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