Shadow in chest is recurrence
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And I work part time.
Good news TMs dropped another 10 points besides all the flu, sticky lung, etc. Take that cancer! liz - sending love from CA, ditto Ioana, Div, Cive, Marion and Pat. Please join us virtually tomorrow for a proper US/Thai feast. ))0 -
Hi all,
Firstly welcome to Marian and thank you for your sweet comments about our thread.
I have HP treatment tomorrow and will be making my way to York hospital for my 3 weeklie IV. Hope the veins can keep going!
Life at work is very busy. Y8 parents evening next week and lots going on. I am very lucky to finish for the holidays on 15th Dec though.
Going to a Christmas fair this weekend. Love working in a school at this time of year as the excitement builds...
Hope things are going well for everyone. How I wish we could get together over a choice bottle.
What would we have.... for that first meeting?
Hugs
Liz
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great news on TMs Claire!
L
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Hi all! Wishing everyone a Happy Thanksgiving! My mom's lung biopsy results were good. Dr said it's not cancerous. Was a relief. Dr will keep eye on the nodule. Her next scan is in January.
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That is the best news. So glad Di. What great news for your Thanksgiving.
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Happy Thanksgiving to All,
Ioana
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We lived in a big compound in Saudi Arabia for over 17 years and American Thanksgiving was a major event and it was helped by the fact that the weekend there was Thursday/Friday.
Thanks for all the welcomes and I will try to start remembering names and each of your stories.
Happy for next two days as I have 2 hour physio with the big sleeve and pump on for most of that time. I also have my first visit to a GP who has agreed to take me on as a patient. This is like winning a lottery as it is virtually impossible to get one. I tried several leads and this one was helped along by the niece of an old friend.
Just home from a concert, Christmas themed and the first time I have seen "The Tenors." They are Canadian and in fact from here or near here on Vancouver Island and a good concert.
Marian
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Di just seen your post about your mum and am so delighted for you. Huge relief!!!
Best wishes for Thanksgiving to all.
L
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Di - thank you for posting - great news about your Mum!!
(((())))😊🌷🐣
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On the train to York for HP. Beautiful sunny day.
Morning to all my friends!
L
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So today the veins were unhappy. In the end I made the call to use my left hand which is my Lymphedema arm. It is only mild and I just have to hope there won't be any increase. At the time I felt it was worth the risk. I had a faint moment as the nurse was digging around.
Of course they want me to have a port but I really don't want that. I am in denial about the fact that this is a marathon not a sprint. The man next to me was talking to me about next time when he will finish and be able to ring the bell. Hmmm...
I trudged back through a very crowded, Christmassy York and almost fell asleep on the train. I was tempted to stay on and go all the way to London, 1 hour 30 mins more, but I got off at Doncaster and then took a bus home.
I would love to say that my 3 teenagers were busy cooking the evening meal when I walked through the door- but no that didn't happen.
Sat and watched Masterchef and hardly moved a muscle.
Wanting Christmas to be here. Just tomorrow to get through and it is the weekend!
L x
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Jackaboo,I started this post hours ago but my weekend guests arrived and I thought it polite to shut my computer. Now in bed and falling asleep. Wanted to say though that 5 years ago I loved my port and sad to have it go. My veins are hopeless and staff in lab fro draws as well as staff when I had my CT with contrast two weeks ago thought a port was a good idea. I am excited as I get it Wed. and will let you know if it was as easy as last time. Then I had it inserted by a cute French Canadian cardiovascular surgeon with twilight sedation and we chatted the short period of time it took. I went home and we played a board game that night with some young friends.
Guests are my boyfriend from 48 years ago and his wife. Lots of fun so far and we even had a Skype call with DH in NZ.
Wishing you all a good weekend,
Marian
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All quiet and another week has gone by. I did indeed get my Bard Power Port and happy for it. Jackboo, if you are coming to an end of chemo then I would not be wanting one either. I only know one family in York but you just never know. Rachel and Jim McTurk and 3 grown kids.
Rain all week and even with taking it easy with port in, I may actually get some cancer filing done. Tomorrow I have a two year old for part of the day while her parents get some things done.
And you my friends, how has life been this past week?
Marian
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Hi All,
Busy week here. There is so much to do at the office at the moment that it's hard to keep up and I must admit, I am finding it a bit challenging. I seem to peter out by about 3:00 pm and find it an endurance test to make it to the end of the day. Thank goodness I have Sadie in day care twice per week. She comes home tired which gives me a bit of peace. It's a good thing. Wednesday I hit the wall, went to bed at 7:30 pm, got up to take Sadie for a walk at 9:30 then straight back to bed. Slept until my alarm went off at 5:30 AM, turned it off and slept for another 45 minutes. Could have slept more.
Had my CT scan on Wednesday. The GP at the Cancer Agency, who is quite lovely BTW, took me in to the physician's area to show me the scan. She thinks there has been a slight reduction in the pleural thickening but we couldn't elucidate much with regards to the peritoneal mets (my primary concern - too damn close to the liver!). She ordered round three of Madame X but my MO apparently does not agree. He wants to wait until we have the radiologist's report before we decide to continue with Xeloda or not. I think he expected more in terms of a clinical response - it appears if there is any change it is very subtle. Hopefully the report will be in on Monday at which point he will email and/or call. Going to be a bit tricky to connect as I am in an all day meeting.
I did have one chuckle at my GP appointment. I showed her my ribs which are apparently being pulled by the pleural mets. My rib cage is quite collapsed at the bottom half of my chest on the right side. At one point her response was “Weird" Ha! Awesome. I was always a nonconformist but I seem to be taking it to extremes with Stage IV.
Best news is they are switching me to an IV bone strengthener. (Ioana, I had it wrong. Recommendation is Palmidronate.) IV once per month is far preferable to the daily pills I am on. They are such a pain to schedule as they have to be taken on a very empty stomach. I think this is, to a large extent, the cause of my fatigue as my brain keeps stressing through the night about making sure I take them early enough to keep my breakfast routine.
Hope you are all well. Sorry about another lengthy post. Need to post more frequently and then I might have less to say. 😛
Pat
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Hello All,
Pat waiting with you on the results from that CT.
Liz - are you on holidays ? Any snow ??
As the school year closed for my son grade 1 we made Christmas cards for class mates.
It is hot and humid down here - as we are on water and they have not sprayed yet - full of mosquiotos. Tomorrow my threadmill comes inside. Hugely busy work schedule - mercifully I have this first week of holidays Off - everyone (patients and staff) is just a little more tense in hospitals at this time of the year....so eveything takes a little longer to flow, just that little bit more energy to get right.
This week I will be between my chooks, the garden and the sea.
I have planted marrigolds next to my zucchinis.
And if you look closely I am also growing corn - it's from throwing the chooks rubbish in the ground.😱😨🙄
Claire 😊, not quite the boutique winery yet - but I planted this small Chardonnay last year, and it has survived despite my neglect over winter.
Marian, I thought of your DH sailing, I love boats. I know nothing about them, but I discovered through small trips on our coast that I do not get sea sick even in rough water and I could sit on a deck gazing out FOREVER.
Hugs to all,
😊🌷🐣
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And a little webmd for those with any type of neuropathy.
https://www.webmd.com/diet/supplement-guide-alpha-...
If you wish to know more - google alpha lipoid acid and breast cancer - there is some trial info.
😊
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Hi All. Thankfully, I have good news to share. CT came back as stable. While I obviously would have liked to have seen some reduction, I will take stable given the issues I have had finding something that works for me. Phew! Madame X must be having some effect as Mister C has definitely been on the move.
My MO indicated it was really up to me. If I was feeling worse, we should probably try something else. If I was feeling better then he suggested we do two more rounds of Xeloda. Given that I feel there has been some subtle improvement I think we need to press on. This sure isn't a game for the faint of heart! Bit of a high stakes game of chicken. 😳
Love the garden Ioana - particularly the corn. 🌽 😉
Well, time for bed. I think I may sleep easier tonight. Oh wait, I still have those stupid 5:00 AM pills!
Hugs. Pat
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Pat,
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Hi my friends,
I have been a bit quiet- nothing major, just busy.
Pat- so pleased for you. Great news.
Ioana- beautiful, calming photos. We had snow here last week and more forecast on Thur. For many years snow has been rare in December.
Trial- still no news.
Ioana- lovely card making skills. Very impressive.
Apologies for missing anyone out- but hi to all.
L
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Hi Liz,
Quiet is good - happy you have snow - I always miss it around Christmas - no matter how charming a barbecue of crab and prawns and a glass of iced Chardonnay can be in 30 degrees heat - it is for me, never quite the same... Still it is home and over the last 40 years or so I have come to love it dearly.
I am sorry you are still waiting on the trial answer - it's really crazy around this time everywhere, hospitals included. May pay to nudge your BC nurse - as always my advice is to tell the truth - just call and say you would appreciate an answer before the Christmas week so you have time to get your get around any planned trial.
Liz, again 😉
Do,you take alpha lipoid acid?
The other thing to ask your oncologist is whether it would pay to take a VERY small dose of Lyrica.
It's pregabalin, an antiepileptic - with some use in chronic pain. My sentiment ( here we go crazy Russian feelings again .. ) is that the doses are sometimes too big and many people get to see the side effects - for a heated discussion head over to the pain thread I met Marian on. And while the stats are not there to support use in cancer treatment induced neuropathy - I am not convinced it's not beneficial if the neuropathy is mild.
Maybe even as low as 50 mg bd ( yes I know they say it is not effective under 150mg, not sold on it, depends on what you are treating and pain is hard to quantify ) but anyway worth a question to your treating oncologist.
( Marian if you are reading this, you are on it for an altogether different matter so don't pay any attention to the above)
Funny - I posted a bit on the Take the fright out BC - saga - and again my theme was ...just tell the truth, don't coat it - be genuine - and what do I see now - a bald woman with no make up on. Now really?? - yes we go bald with chemo, and I wore little because it was too hot and I am sold on Yul Brenner, but I had eyeliner on, and blush and lipstick - and my always trusty blue head wrap...it's so hard to get it and get it right when not in it🙄🙃☕️🐥)
Pat - you like corn??
Mercifully the lemon grass is in a pot - it grows like crazy here so does ginger and passion fruit.
Happy you are staying on X - I get the question mark - but being able to have a known routine around the holidays should offer some down time. How was Chicago?? And I never got what you decided on the rads front?
(()) to AL
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Okay. I’m glad I’m not the only one who finds the bald woman a bit much. I think it’s the pathetic tilt to the head that annoys me. I’m fairly certain that throughout every treatment, I have done everything I could to avoid pathetic. I’ve been bald twice and always wore makeup (although I must admit that I have never been a fan of lipstick - always feel like my lips are entering a room before the rest of me). And out in public there was always a hat or scarf (my office however was my space so hat be damned). It was a bit harder on Taxol. It’s hard to pull of “the look” in the absence of eyebrows and eyelashes. 😱
I am comfortable with the decision to stay on Xeloda at the moment. Of course, Murphy’s Law, I told my MO that things had improved yesterday and tonight there is a symphony being played under my ribs. Let’s just call them tumour flares shall we?
Had the radiation a couple of weeks ago to my right hip. The sciatica is gone so it must have done the trick. My back is bothering me still but I suspect that has more to do with the fact that I’m 55 and, occasionally, lift and/or tug things I should not. Slight independent streak.
Chicago is on the 22nd which should fit well with the X schedule as that’s my week off. The corn appears to be growing nicely Ioana. You will be completely self sufficient if you keep this up. 😉
Wishing you all a pleasant second half to the week. 🥂 Pat
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Ioana, this must be you Wildplaces~~I too love the photos both of the garden but also grade 1 cards. DH has made lots of progress on the boat and is well ahead of his schedule. He is staying with his sister and her partner and I know they are all appreciating this time together. Claire and Pat came on m,y swan song trek in Nepal in May and I love them like my own sisters.
Pat I know nothing about Xeolda but will look tomorrow. I should be asleep trying to get some normal from crazy sleepathons last days. Today I was energized which is weird as it nearing the end of my Ibrance cycle. It was so beautiful out too. I went for a short walk just at dusk with my neighbour. Oh, also I have asked to change to a new pain management doctor and will be seeing a woman doctor on the 22nd. I may be asking a lot but at this point I know when something is not working.
Jackaboo, being new here I don't know about your trial?
OK really have to sleep.
❤️Marian
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Liz, do you think that you might have not gotten into the trial because you were doing so well? That would be a bummer, well sort of.
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Hi Cive,
Yes I wonder if I am now not eligible. Just asked York to chase Sheffield for me now as I'm sick of waiting.
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Liz,
If there is a lesion they can safely shoot at you will be included.
The trial will take place at Sheffield ??
Does York have radiation oncology and access to this?
I will try and PM you.
😊🌷🐣
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Thank you Marian,
Yes - wildplaces it's me, Ioana.
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Pat,
Follow the liver thread - lots of interesting stuff - and there is a lady Lucia42 from Vancouver posting on some Canada stuff that is clever - still in its preconception phase but nonetheless very clever.
😊🌷🐣
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Hi,
so I was just told that I have a recurrence in the chest wall with pleural involvement but my RO thinks that the latter might be due to MRI sensitivity so for now I am going with chest wall recurrence. the RO mentioned that if it can be done a surgery may be an option but I don' like the idea of it. so I am wondering if my options are only chemo and rads, I had 50GY of rads 3 years ago when I was first dx-ed.
Any input would be greatly appreciated.
Thanks.
Lola
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Hi all! Liz, Loana, Pat, Claire been staying busy here with the nice weather. Been trying to keep up with the leaves. Put Christmas tree up yesterday. Well I should say brought tree down from attic. Last year I left the lights on it and took up to attic. Well anyways Terry and I decorated it. Nothing new still phantom pain. Dr tried 2 different medications Amitriptyline and Elavil. Didn't work made it hurt more so went back to gabapentine 600mg 4x's a day. I see therapist on the 19th and will inquire about botox. Here's some holiday cheer.
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Hi Di,
I love Christmas trees - ours is arriving on the 16th. Thank you for posting - now that is a TREE indeed.⛄️🎄🎄🎄
Two things:
1. Although taking gabapentin and amitryptiline used together may increase their side effects such as dizziness, concentration etc - I would ask, because in the peri-operative setting we push the gabapentin to your doses so between 1800 and 2400mg a day, but we add a dash ( sprinkle ... ) of nightly - so pm dose - amitryptiline starting with 10 mg ( the psych guys laugh since the antidepressant dose I see 75mg ) maybe 25 mg if well tolerated. So ask if you could try a small night dose while keeping your gabapentin routine.
2. There is work to suggest that lignocaine ( a local anaesthetic ) may work as well when injected into trigger zones as Botox. Something to keep in your pocket for the Botox meeting.
(())
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