Shadow in chest is recurrence
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It is after midnight but one last check brought me here to say only that your spa, Liz looks so amazing and my imagination as I fall asleep may run riot on the inside!
Love you all!
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OMGosh - beam me up Scotty and put me in LIz' pocket next time she indulges.
It is a dream for me - I love it all - history and decadence rolled in one - I hope you had the break you sooo looked forward to!
Stay strong - and keep telling us about your swimming - I am trying for three sessions a week - if I get to two I will Happy.
Pat and all
Here is the article posted
http://www.ejcancer.com/article/S0959-8049(18)30231-4/fulltext
Hope you can open this link.
Pat - I think this is the company responsible for the technology
https://www.sirtex.com/eu/patients/about-sir-spher...
It's an Australian company - although !..there was a USA bid for take over early this year, so they will be unfortunately gobbled up at some point
😊🌷🐣
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Ok - found this on the OMG they found the cure for stupid thread
Love it!!
(())
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Brilliant Ioana!
I am awake and yet it is only 7.30 on Sunday morning.
Took some senior students to Stratford to see The Scottish play on Friday and got home at 1pm Saturday morning. Very good performance.
L x
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Love it Ioana. I have had to deal with a lot of “stupid” lately. Including my mother. She actually said last night “Imagine if you had to deal with all this if you were old” - she’s 87 and struggling with her aches and pains. I told her if that was the case I would be very happy to have had the chance to live a good life. Probably should have been kinder but.... geez.
The early birds! It’s 6:00 AM on Sunday morning here and yet... I’m awake. Thankfully taking tomorrow off as it’s my birthday. Determined to make them count.... 🥂
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Good morning early rising sisters,
If I may, I'd like to introduce myself to this thread. First me say Wildplaces that the minion graphic made me LAUGH OUT LOUD because OMG it is so true how stupid some people can be.
I was diagnosed two years ago (details in siggy) and was NED. But two weeks ago a 5 cm "shadow" was detected in my yearly MRI. CT scan confirmed. No bone or organ mets thank goodness, but I have a CT biopsy tomorrow because the "shadow" - the ghost, the Unidentified Growing Object (UGO) is in an odd location, enmeshed with muscle and rib near my armpit. I have gone through terror, grief, and am now just numb. Words that keep repeating: recurrence. 5 cm. Inoperable.
Like you jackboo, I have a child and would like to see her grow. And the news that even after aggressive treatment, participation in a clinical trial to prevent recurrence, and eating and exercising the best that I can -- that all of this may not have worked, may not protect me from a shadow that wants to eat me alive -- it shoves me below water, near-drowns me. This is the part where I gasp for air.
I am sick of cancer. Sick of the cycle of grief and terror. Curled up in a ball when I think of how/when to tell my daughter, who is so vulnerable in her own right and needs her mama, and my husband, the good man and bear who's bearing the weight of this -- so sick of this disease. F**k you, cancer. Effity eff eff.
I am sorry to join this thread but so very grateful you are here and know the road. Wishing you all a good rest of the day. XOXO despite the cancer suckage.
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Welcome jojobird, to this thread which I found several months ago and am ever thankful for my friends from near and far here. Wildplaces also has a young son. Mine are older and so easier looking forward I think.
I take it that you had no symptoms prior to the scans? My tumour or module as the terminology now calls it, is all the axillary area but deep in and I had lots of symptoms. Let's hope yours is in better position for treatment. I did have 8 palliative sessions of rads in September which was not successful sadly as there is zero chance of more rads in my future.
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I am having coffee in bed on what looks like a day with some sun in it. I am waiting for news from the meeting in Ottawa with our PM and the premiers from BC and Alberta. I am an old activist and staunchly against a pipeline from Alberta to a port in Burnaby that would triple tanker traffic. "over my dead body has been my claim for several years.
In my previous post I did not mention my meeting Tuesday with a plastic surgeon and physiatrist team who work together on nerve issues. Though I did go with some hope I was also prepared again to hear that nothing can be done at least operatively. They had my two CT scans with contrast but not the MRI as that was done in Vancouver. Fortunately I brought copies of all reports and was able to provide the written copy. Prior to that I could see that they had hope but once they read the fine print they too were clear that my tumour due to its location, and entanglement with nerves and blood vessels cannot be removed. I had a friend with me as note taker and we both liked the team. My friend said she thought the surgeon was going to cry but I think it was just her lovely manner. She is going to refer me to a specialist on nerve blocks and as well I will see the physiatrist in May.
Don't think I mentioned that I also have a new MO who I will see for the first time April 30. Even though I was told that I have no choice in the manner my my previous MO here in Victoria, t was not so and it is done. Advocacy for one's own cancer is vital and I thank you Ioana for your suggestions re second opinion (the team on Tuesday plus speaking with my Vancouver MO seem like that second opinion) and Liz and Di and all of you really for your support over the past couple of months. One last thing~~nortriptylene the latest drug tried for nerve pain has failed and I have halved the dosage and this next week should be weaned off. Sadly I feel that it created balance issues, unneeded anxiety and fear. Of course my Ibrance cycle adds to the mix but I am back on an even keel. I did write a blog post this week and if you have an extra few minutes it expands on what I have written here. The link is just above my stats.
Hugs everyone!
Marian
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Hi jojobird,
Welcome to our thread. I started this ‘shadow’ thread when my head was in a very bad place; a place that you are now in by the words of your post. So I know how utterly terrified and lost you are now because that was me in Feb 2017.
I am sorry that you are going through this again. It stinks and there just does not seem to be any better way of expressing the raw emotions that come with a possible reoccurrence of this shitty disease.
My advice to you right now is to gather your inner strength and get all the information on exactly what you are dealing with. From the sounds of it, you are not quite in that position yet, but once you have the full picture, a plan will give you a way forward.
The ladies on this thread helped me to survive and thrive. There are good and bad days but I can pretty much reassure you that it will get better.
Yes, I am a mother to 2 teenagers. When I was originally diagnosed they were 10 and 8. This is the hardest part, but again you don’t know what you are dealing with just now and so talking to your child probably needs some consideration because you need time to think about what you feel fully comfortable with saying. Don’t rush into this yet.
Keep us informed. My dear friends will welcome you in turn and we are here to help you and try to comfort you through this storm.
Take care,
Liz
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Marian,
Happy birthday! Hope you have a lovely day!
It is late here now. Will post more in due course. I’
Hi to all tonight!
L x
🎂🎂🎂💐💐💐💐💐
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Happy Birthday Pat!!!
(I was looking for a bottle of wine to post - I guess I am too busy sharing them ....
Hugs galore,
Ioana 😊🌷🐣🍾🍷 ( why not...)
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Jojo,
I am Stage 2, I just landed here and these remarkable women have been kind to me. I have an 8 year old sone and I parent him largely solo. That not quite true, my parents are across the street.
You need to calm your spirit and steel your heart. You have a battle but there is hope.
There is a Stage 4 TNC thread. I follow the posts of Cure-ious and Zarovka - they are both ER+Ve but heavily into immunotherapy which at present works better in TNC. Please search for them, and when you are ready reach out - they rock!
Where are you ? Roughly geographycally...
(())
😊🌷
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😉 It’s my birthday Liz. Clearly you were up too early? 🤪
Jojobird, I also want to welcome you to this thread but also wish it wasn’t due to possible mets. There is little that I can add to what others have said. You are in the worst possible place right now waiting for results and answers. Please just know we are all here to support you. Come back often and let us know as you learn more.
Hugs to all. Pat.
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Marian,
A big hug from down under - please keep us posted on how everything is turning out.
Nortryptylline - look it's been around for a while - who prescribed it for you - would it have any benefit in a small ( about 20% of usual dose ) taken at night. The drug is an antidepressant and when used for neuropathic pain in cancer patients sometimes the doses are too high and you see the side effects.
It's worth a question - but you need to aks the right person to get the right answer - I say at night because the very side effects you described wear off by the morning, and it gives you a bit of sedation.
It's just a thought ....
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Marian and Liz and Wildplaces and Pat,
Thank you all so much for the kind welcome. I am in California. All of your thoughts are spot on. My biopsy is tomorrow and I am working hard to keep myself focused on one day, one task at a time and not into catastrophic thinking. My daughter is headed to high school next year but knows nothing of thisand wont know until we have more information.
We just came back from eating at a restaurant and I am off to read, then bed. Heartfelt thanks for the kind welcome. And happy birthday, Pat! 🌺
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Ioana: The pain doctor at the cancer agency put me on Nortriptylene after Lyrica (pregabalin) did not work. Nerve pain is not great to deal with and it is currently 60 Mg Oxyneo every 12 hours with Oxycodone 10-20 mg for breakthrough. I had been taking Venlafaxine 150 mg/day for about 3 years and it was increased to 187.5 as a coanalgesic. My first pain doctor as BCCA also had me on 1000 mg of Tylenol Extra Strength and he was a big promotor of Lyrica. Around that time I switched and like my new younger doctor. She also brought up medical marijuna and I was referred to the GP who now has me on very small doses.
As for the Nortirtylene Ioana, I was told that it was an antidepressant (seems quite common) but in much higher doses. I started at 10 mg for 3 nights, then 20 for 3 nights and so on until 50 mg. It was after several days after that when I had the fall and felt wobbly and a bit anxious. Since it did not help nerve pain anyway it is going and already at 25 mg for 3 nights I feel better. Again, this neuropathic pain sucks!
Jojobird, I will be thinking of you tomorrow.
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Pat,
Happy birthday to you. What are you planning to do to celebrate?
Yes I am in a fatigue blip as you can see. I do apologise. Posting late at night and early in the morning is not a good idea.
Hot flushes are waking me up periodically and I am having a lot of issues with Lucy- 15 and wilful. Tension headache and rows! Teenage hormones and a menopausal mother meeting in the middle.
Lots of love
L x
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Marian,
If I was you I would stay on Pregabalin at 75 mg bd and in fact I think I would take 75 after lunch and the next 75 before bed. So nothing in the morning so you have a clear head.
I would also ask to be put on only 10 mg of Nortryptilene at night.
You will not see an effect out those doses and they may say that they they are tow low to work. What you should do then while on them is diary how much breakthrough oxycodone you need. And what you are looking for is the two above ironing out some of the breakthrough pain. You are also looking a thing whether you are managing a better night sleep. Please ask - you have nothing to loose. Tylenolol is paracetamol and in long term use it does have some liver side effects. My feeling on it is to have it as an extra for breakthrough pain - ie try and take only one oxycodone and maybe 500-750 mg of paracetamol ( yes I know 10000 if the adult dose)
(()
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Liz,
I read this on a thread and it works for me - keep a cold wet facewasher by your bed side in a bowl.
This days I wipe my face in my sleep and noddles back to snooze land...
No idea on teenagers - but super willing to take instructions, ahhhh
Hug you dearly - how exciting to be out all night with a bunch of rowdy adolescence. It's that too wicked of me??
😊😊😊🍀🍾 Pat,
I am at the beach - back tonight - I have earmarked in my head the wine bottle I will be opening - big glass to your health !! Have a fab day!!! Bugger the distance the lunch we could have all had...Where is Claire our fearless sommelier??
😊🌷🐣
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Ahh Liz, sometimes it’s just wonderful to have normalcy and I must say, a teenage girl and her mother banging heads is about as normal as it gets! I vaguely remember being a horror when the hormones kicked in. Sorry about the hot flashes. I always joke that for me it was one big flash and then it was over. The CEF chemo I had in 2001 threw me into very early menopause.
Thanks for the good wishes both of you. I was supposed to be playing golf but it looks like the weather is against it. We’re having a very wet and cold April unfortunately and my golf buddy is a fair weather player. Another friend is coming over this afternoon and I have a bottle of champagne in the fridge ready to go. I think Claire would approve. Of course, I would have jumped at the chance for lunch Ioana. Who knows, maybe one day.
Hugs. Pat
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Ioana, I was at 75 mg and it did not work~~a long trial too. It works for only 1/8 and nortriptylene 1/2. Not me. I am not taking the Tylenol. I sleep well and have trouble dragging out of bed so will not be adding in by inceasing pregabalin. Oxyneo 60 mg bid is what keeps me going despite constipation. This morning I had such fierce continual trhrobbing on the right side of my hand through the little finger that I got up at 0500 and took my 60 mg of Oxyneo. Methadone is next up for discussion and always has been a possibility. The icy cold caused by the poor or lack of conduction adds to the extreme pain but I can help that with a variety of ways!!heating bad in bed, microwaveable bag that goes into a casing and plain old having my hand on my belly.
Nerve block we will see about. Off for a much needed massage.
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Happy birthday Pat! I hope you and Sadie celebrated. Jojo - welcome, this thread has amazing strong women, Ioana - you make me smile.:) Tired of stupid people and tired of cancer too. We are a tribe. I am headed for NYC tomorrow for a job interview based in LA. Wish me luck!
(()) Claire
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And I did forget to say happy birthday to Pat~~wishing for better weather fr your golf and for all os us!
Hugs Pat.
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Marian,
You know your symptoms best so always do what you feel it's best for you - trusting your gut instinct is part of the path. My point was that these drugs are neuromodulqtors and have benefits even if you do not see a measurable decrease in pain scores or reporting. And my suggestion was to try them on very low doses to try and avoid the side effects. Havingsaid that I totally respect if you feel they make too drowsy and do not like that. Do what feels best for you!!
(())
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Happy Birthday Pat! Wishing you a wonderful day!
Marian I'm so sorry to hear about the consult. I pray they find something to ease your pain.
Still waiting for biopsy results. Hoping I hear something today. The wait is killing me. I think too maybe I'm better off not knowing.
Liz your outing with the students sounded fun but bet you were exhausted.
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loana how is your vacation? Bet you are having a great time. Need pics please!
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Di, I love it every time I see you here, rough as it is and for you I hope for news today so that you can know and hear what a plan could entail. Please let it be news that allows you you carry on with your recovery from last year let alone adding anything more to it.
Another virtual hug Di as you go about your day.
Marian
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Argh Di, I really hope you heard on the biopsy results today. There just has to be a better way than having patients wait and wait for news. Please let us know once the results are back. We’re all holding our breath with you.
Sending hugs from chilly Victoria. Pat
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Hi Di,
Glad to see you posting as you wait for results. Let us know and we are all here for you.
My HP tx has been postponed until next week as so have a bad virus. I feel as bad as a chemo day today and am off work. Guilt....
sending love all xxx
L
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Thanks again for the well wishes and kind words. Aww Liz you so deserve a break. Snuggle up and get lots of rest and stay hydrated. I see oncologist at 1:30 today. Been have bone pain in elbow and knees are so bad if I bend down I moan getting up. Praying that is not another symptom or bone cancer. Dreading hearing what oncologist has to say.
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