Shadow in chest is recurrence
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Hi Liz,
I have not been on the site much but wanted to check in on you today. Sorry to hear the SEs are playing havoc. You've received some good advice, don't let the nausea get ahead of you. You will feel much better if you can get mobile do don't be afraid to ask for the meds. The only caveat is to watch out for constipation with the Zofran. It was a huge problem for me in my first go around with BC.
Claire, I've been thinking about you and was thrilled to hear that you did not have fluid in your lung. I know first hand what a pain this lung thing is and so I'm so glad that it won't be an issue for your upcoming cruise. Sending positive thoughts your way and forbthat adorable kitten of yours. How is the house holding up? 😉
Pat
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Lalady, if you drive regularly to UCLA for care, ask your doctor for a handicapped placard for your car--the kind that hangs from your rear-view mirror. It can be temporary, until you're feeling better. It allows you to use the valet parking service for $6 instead of $12 and saves you a bit of a hike.
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Hi Pat
It is great to hear from you. Yes I've had some very good advice on SEs to help me through. This is one special thread. We haven't chatted in a while so will PM you this week. We are overdue a catch up.
You are right about the constipation. Just as one problem is solved, another occurs. I did do a long walk today and am feeling physically better. However I did cry tonight for the first time in a couple of weeks. I think it is because Monday morning is looming and my husband and kids are heading off to work and school.
My Jack is 16 on Tuesday! Reason to celebrate. I am so truly blessed to be his mum.
Chat soon
Liz x
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Hi Liz - a good cry is allowed, you have a lovely family.
We are all rooting for you to handle the SE's! Spring is lovely here today after a solid rain last night. I will be back at UCLA on Wednesday to start Afinitor - and yes, sbelizabeth I do have a handicap placard for my car! I got it when I was using IV chemo at UCLA and have maintained it since sometimes its a long walk from the parking lot to my office (plus saves $6 at UCLA). My kitten is very funny attacking all my washed clothes today, so I may take a pic of his antics. Now if I could train him to attack cancer cells....0 -
Di,
We have not heard from you in a while - how are you ?
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Hi everyone
Just checking in to say hello. Today my son Jack turns 16 and we have had a quiet family celebration as he is right in the middle of his exams.
I am up one minute and down the next even within the same day! This is nearly always influenced by my physical symptoms.
WORK- up so high this morning that I was talking about returning to work this Summer!! By 5pm I am on a major downer- contemplating having to ring the ward yet AGAIN because my throat is sore and I feel a bit warm.
Hmm- sorry guys all to be expected. I also had to make a call to Barclaycard only to be asked if my type of cancer was curable! Thanks for that question Barclaycard!
Hair still here day 11 which is only prolonging the agony I now. Goodness I am on a major moan guys. In Yorkshire there is a great saying for moments like this and I remember my Granny saying it- " She wants putting in a bag and shaking up. ! " now what do you make of that folks????
I feel you all with me as I do this and that right now is so very valuable.
Clare- more kitten pics please.
Di- sending love. Check in soon x
Liz x🌷
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hi Liz,
Hoping you had a great birthday for Jack!!
How are you going - when do you start your next cycle?
( it took until midway through my third cycle to shed my hair - I had cut it super short and I managed to get rid of it at once in one shower - for me that was better then picking it up from pillows...)
I am ok - skin discoloured but healed. Scan Ok as you know, so all I have to do now is stretch more and swim (I am not entirely convinced, but we All know I am a little/lot mad, and very very happy to let sleeping dogs lie for now)
Claire - you would have had your first Afinitor by now - honey or yoghurt what was your pleasure - both maybe??
Di - how are you??
Hugs to All,
😊
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PS love your saying.
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Hi Ioana
Glad to hear youare looking forward. The skin discolouration will eventually return to pre tx, or at least that was my experience. I think the regular exercise will also help to lift your mood. I recall being quite low post treatment. I think it's kind of a release, almost a state of confusion over being given the green light again!!!
Claire I too hope tx has been kind. And Di we look forward to hearing from you. It has been a while.
Can anyone offer a plan for my hair? Is it worth giving cold cap one more go next Thursday? Today is day 14 and I have washed it with hardly any loss.
Hello to everyone else.
L x
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Hi Liz - I actually start my new pill tonight - secret ingredient is sour cream as I forgot to buy yoghurt. Oh well. at UCLA I was told you need to start cold caps prior to chemo, as the roots get affected right away. I used Penguin cold caps, no regrets. Maybe your hair is super strong and you can keep a lot of it? Hoping for good thoughts. Ioana you always make me smile.
Claire on her way to the refrigerator for my pill
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Hi Claire
Forgive my ignorance about Afinitor. I see you have to take the tablet with food? I must jump on the thread and read up some more! Hoping you adjust well to this new tx.
Day 15 and still having tummy issues and felt tired yesterday. My lovely friend came over though and we sat in my sunny back garden. She is a fellow long suffering teacher too. Sam brought me a wonderful bunch of yellow roses. Will try and post a pic.
Hair- York use the Paxman system. I just don't know how people can tolerate it. I feel like a failure.
Hugs L
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hi liz great to catch up on your posts so great to read the collective comradie from everyone
Xo wishing you calming progress as you undergo therapy Bright
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The roses are stunning - enjoy!!
Thank you for posting!😊
On cold caps - having not used them, I can not comment but I have already mentioned that should I face this treatment again I would definitely look into that option. Try it Liz and see how it goes - no expectations
Claire - thank you - sending lots of yoghurt your way 😊, that and a glass of Mornington Peninsula Pinot !!
https://unclineberger.org/patientcare/support/ccsp/nutrition/files/PrebioticsandProbiotics2015.pdf0 -
Hi! So sorry i've been out of the loop in responding to posts. It has been a busy coupme of weeks for me. I went into work on april 24th to sign my resignation papers. It was a very sad time for me having to say goodbye to my co-workers. We have a program at work where you get cash awards for your years of service. Some of my co-workers donated their cash awards to me which made me cry. My b'day was the 8th so i had to get car in for epa test and get my plates. I drove for the first time on the 9th. Driving went well except i need to get my blinkers modified. Oh the freedom i felt driving...on tuesday the 9th i also receiveda call from the therapy department saying they had to cancel my therapy cause my insurance lapsed. I spoke to work and they said they couldn't process cobra until my last pay day which is today. Work said i should receive cobra paperwork within 2 weeks from today. The Cleveland clinic called on the 9th and asked about insurance. I explained the situation to them. The clinic called back 10 minutes later and said they are going to pay my cobra for me to keep my remaining appointments and to send them a copy of my cobra as soin as i get it so they can pay it. That was a load off of my shoulders cause i didn't know how i was going to pay for insurance. I saw my oncologist on the 28th. I will see him every 3 months and get a CT scan every 3 months also. The orthopedic surgeon said the phantom pain is going to take time.
How are you Liz? Your sons birthday was the day after mine tell him i said Happy Birthday! Hope you are feeling and doing ok. The flowers are beautiful! That had to cheer you up.
Hope all is well with everyone. I'm praying for all of us.
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Good morning Liz and team! Hoping you are feeling better today, those roses are fab.
Don't be afraid of cold caps - they totally saved my hair during IV chemo and I would use them again if needed. I am toasting you with a glass of whatever Ioana is having and smiling. I so wish we lived on the same side of the Atlantic, I would come visit ,
bring flowers and have a cup of tea and enjoy the day with you, even if you had SEs.
D - wondered what was going on. Leaving work would make me cry, you are so lucky to have help with Cobra and thrilled you are driving again. One day at a time ladies. Gentle hugs for all!(()) Claire on her way to work - above on my way to Sundance in January.
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Claire - from my mother's garden. I am nowhere as skilled - I grow herbs and carrots!
Hope the whipped cream is treating you kindly - I can not wait to see you in St Petesburg!!
Di - I will write soon. Sounds like you have been through quite a bit - great to see you driving.
Liz - second round was on Thursday?
How was the psychologist ?? Be brutally honest - any good?!
It is Mother's Day here - Happy Mother's Day !!
Hugs to all
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Evening ladies,
Today has mostly been a good day. Spring sunshine and warm. Walked and cycled which was fun.
The boys ( Jack and Cameron) have their first exam on Thursday, Biology and have spent most of the weekend revising.
Tonight we took Lucy out for a meal. She had spent the day with her friends and so it was good to chat. She is quite the politician and also has plenty of strong opinions!
The next treatment is Thursday 18th May.
Psychologist appointment is Wednesday. Thinking of cancelling. It's another appointment and my gut tells me it will cause me to cry, the day before I have treatment again. Also I am beginning to do a bit better ladies. When I was cycling along today it was hard to believe I was ill- quite a surreal feeling. Week 2 post chemo has been very doable.
So to the negatives: hair falling out now and the onset of neuropathy. I've jumped onto the neuropathy thread. It's minor burning/ tingling ladies just now but scared. Want to ice but with no freezing facilities- how? Will call and ask York for advice tomorrow.
There is no doubt that I have coped very well over treatment one, however it has been a steady succession of side effects. Glad I kept a diary.
Di- wow driving again. Great news. You are going through some challenging times though. I wish I could pop round to give you a hug. I'll message you before my next treatment but for now it is lovely to hear from you. We are both in a difficult position regarding work and your departure must have been painful.
Claire- how are you? How is new drug. Are you on holiday?
Bright- so pleased to see your post- keep chiming in.
Ioana and Pat- will PM tonight. Hope you are both doing well.
Love to everyone
Liz x
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Happy mothers day Liz and lovely ladies! So sorry your hair is headed south, but that is the nature of this beast. Glad you had some cycling to clear your head. :)I'm taking my family out for dinner tonight. My cruise is end of June, so still here working. With you in spirit, and get through Thursday in the big chair.
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Hi Claire
Happy Mother's Day. I hope you had a wonderful dinner with your family. It lifts me to hear you living life to the full: work and holidays. I hope to be in the same place soon but right now in active treatment that is sometimes hard to imagine.
If you guys have examples of any adjustments/ phased returns your employer granted for you that would be useful for me.
Thanks again everybody for staying with me throughout all this. You have my back and that is such a comfort.
Cycling- love it and plan to ride as much as possible.
Diet- blipped over the weekend with too many carbs. Back to lighter diet today.
Liz x
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hi Liz,
That omelette sounded super yummy!
Cycle when you can - you sounded like you really enjoyed it.
Hugs to all
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Hi
I have had my first session with the clinical psychologist in York today. Joined Richard in his daily commute.
I would recommend it but to advise that it does involve some revisiting of the past. For example I had very little emotional support 6 years ago from my ex and so this was one of the topics and I did cry but I need help. I want to keep going because I think she can give me some coping strategies.
So here I am in beautiful York: shopping and wandering about. Just passed York Minster and saw this plaque. Poor Guy Fawkes who led the gunpowder plot was born here and met a nasty end.
I have also bought a new pair of jeans in a smaller size so happy to have lost half a stone.
It would be great to be wandering down the cobbled streets with you all; browsing and picking out a cafe.
You would love it here, even in the light rain.
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will it post- 2nd attempt!
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I love York already - WE will do that walk one day Liz.
Happy you are getting yourself out - keep treating yourself kindly.
I would have seen a psychologist if it was offered - not because I have any specific issues ( apart from the obvious of course!) 😉 But because this cancer shit is a lot to deal with and it's good to bounce
Hugs aplenty,
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And I will not tell you what the obvious is😃😃, that is my own little protected bubble, bubblebubble bubble ...
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Evening to everyone,
Treatment 2 today. Highly successful with easy cannula and quicker, reaction free infusions. Feel tired tonight as did not sleep last night due to steroids.
Love to you all
Liz x
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Hello ladies - would love to join this very supportive vibrant thread. I've been chatting with Liz for a few weeks now as she is exactly 3 weeks ahead of me in her treatment. Been getting lots of support - thank you Liz
So I had my first THP treatment yesterday - so far so good! Glad I've got one under my belt but a bit apprehensive about the side effects. Managed the scalp-cooling but I've been told that it's probably a waste of time. I've bought a nice wig so it won't be the end of the world if it doesn't work.
Hope everyone is getting on well with their treatments and enjoying life as much as possible.
Love
Catherine
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Welcome Catherine- the ladies on this thread are simply wonderful and have saved me.
Glad to hear you are ok. Day 3 ( first without steroids) was my major energy dip day but by Day 4 I picked back up. Day 5 I walked 6.5 k steps but flaked in the afternoon and this was the day that nausea and diarrhoea set in.
Today I have taken lanzaprozole to ward off the reflux I had last time and an anti sickness- some queasiness now but I've eaten a healthy meal and I try to keep doing so to fuel up the nutrients.
Sleep- cannot on steroids and am contemplating a diazepam tonight as it knocks me out!!!!
Try not to worry about SEs and if you do,text me and I can help, as will ladies on here I'm sure.
Record everything in a diary with times you took each medication. I found this so so helpful when telling the nurse about my experiences. I have a homework sheet. Can always scan it and e mail it to you if you want? Secondly, you will find it easier next cycle to compare and ultimately feel less anxious.
Lots of hugs as you go through this.
Liz x
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hello Liz and Catherine,
Hoping this w/end was gentle in you 😊
Claire
How is Afinitor reating you? Is Mr Tinckle being a perfect gentleman ??
Di,
You are always in my thoughts.
Hugs to all,
Ioana 😊🐓
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