Shadow in chest is recurrence
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Hi Team Liz - I'm waiting for PET on Tuesday will meet with onc. grrr Monday's itinerary: fasting PET at 8:15am, drove home for a smoothie, an took Uber to a business cocktail party ( lasted 1 1/2 hours). Then 1 hour Uber drive home, dentist next morning at 8:00am and client lunch at 12:30pm. All on break from IV chemo. whew Really hoping to get on a pill like abemaciclib or x for New Years! Finally over the flu, and goal is to rest this weekend.:) Pat I'd go for the IV of zometa once a month, but why can't you continue on a shot like Xgeva? I am getting that once every 3 mos now. Check X forum to see what those ladies use. Di - always nice to hear from you and Cive and lovely Ioana. I had a small celebratory Margarita with lime and salt at a Mexican restaurant last night with family and getting IV vitamin C later today.
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Stable scan but it was nurse who called. No more detail.
Nothing lighting up anywhere else.
Requested a call from Dr P.
X
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That's great news Liz.You can go into the weekend on a good note... P
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He has just called me to say no metabolic activity noted and said it was dormant?
L
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Dormant is a great word! How are you feeling otherwise?
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Hi folks
My oncologist rang me eventually and these are the phrases I recall him saying: complete clinical response. No metabolic rate. Dormant.
Feel elated Claire. What will this mean for the rads trial?
How are you all this Fri?
Liz x
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Wow !!!!!! - just woke up - I am one big smile.
Great news Liz, just brilliant !
Enjoy your week/end Liz - all Really good.
(()) to All 😊🌷🐣
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Hi all!
Liz great news!
Pat rest up, know you must be drained from flu.
Loana, cive hope all is well.
Mom had lung biopsy monday still waiting on results.
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So Liz wasn't the PET required for a trial? Does that mean you won't do the trial? Still NEAD is pretty nice.
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Hi Cive,
The PET scan was at the request of the CORE trial doctors to see if I was still oligometastic. I was not actually due for another scan as my last CT was the end of Aug. So finding out I was NEAD was abit out of the blue as my own doctor would not have ordered this scan. ( cost wise- he would not have been able to justify it)
I am still waiting to see if I will be eligible for the trial. The MDT meeting is on Mon 20th Nov so I may hear something very soon.
Thank you for asking. Hope you are doing well.
L
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Hello All,
Well another week... we had rain on the GC, my third chook started laying eggs and we are slowly getting ready for Christmas. My son has his swimming carnival next week - love swimming! I have booked tickets to the Wizard of Oz.
Liz - hang tight I don't think PET inactivity will be a reason not to shoot - it will depend on size and how accessible this remnant thing you had on CT is given it's size and surrounding tissues.
Pat - when you can let us know how YOU are doing so I don't chase you on other threads...😉
Claire - I can not wait to hear about the delights and wine you are planning for the holidays.
Di - there is also a small body of work that shows injections local anaesthetic - lignocaine/ lidocaine into trigger pain points might be beneficial - so let us know if the Botox is a goer and how you are doing.
Hugs to all - and a restful week/end,
😊🌷🐣
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Liz, in a strange way the negative Pet with the 1 cm on Ct will be even more reason for the investigators to wish to give SBRT - studies are more publishable when reporting positive results - and you fit that profile.
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Hi All,
It’s been a busy week. Final touches on a project submission at the office has taken up much of my time in combination with medical appointments.
I had my radiation treatment on Thursday. It’s always a bit nerve wracking as you never know what the impacts will be beyond the intended. Thankfully I don’t seem to be experiencing the bowel irritation that was a definite possibility given the location. I’m currently at the “pain gets worse before it gets better” phase with the sciatica playing up more. I’m also a bit fatigued which is pretty normal for RT. But I expect things will improve on both counts after about a week.
For the most part, I’m doing well. Still discomfort in my right chest (back and under my ribs). The substitute MO I saw after round one of Xeloda indicated it would be two rounds before the pain would ease. So mostly, I’m holding my breath hoping to see some results from Madame X.
So pleased to hear of good results for both Liz and Claire. Not sure when I will be scanned again (they did a CT for planning of the RT - I’ve been joking that I want an adapter inserted in my side so that I can charge my cell phone) or when I see my MO. Keep your fingers crossed for me.
Hugs. Pat
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Oh, meant to say that I’m quite looking forward to a night out in December. I managed to get box tickets for Chicago which is playing at one of our local theatres. I love musicals and was thrilled to be able to get two tickets with box seats. Low immune system won’t be an issue
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Brilliant Pat - at the risk of thinking I am setting you up - here I go, crazy Russian strikes again - (Liz smile away ...😉) I have come across Marianelizabeth on a pain thread - she is from Victoria, BC and has an apron that says Fuck Cancer - which I adore...
I have a feeling this lady is a serious cook - if she joins us - we are set for that breakfast we are having at your place.😊
Seriously now - worth a search - absolutely delightful.
...and I seem to remember she posted she is a walker which immediately gets her into my fav books.
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That’s funny. I know her (virtually). Marian and I PMed a couple of times when she first joined BCO as she was changing oncologists with her very recent move to Victoria from Vancouver.
🙂
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it's a small place - the world that is 😊🌷
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Wildplaces and Sadiesservant, here I am and happy to be here. I was kind of overwhelmed with a couple of threads like the Ibrance one and the Facebook ones too and this looks like a good place to be. I hope!
It is actually a sleeveless t that I bought for a short course triathlon with my son in July, 2013 not long after I finished rads. 400 swim, 11 k bike and 5 k run (walk). He was doing about 5 Olympic length tris a week to raise money for "Right to Play." He said cancer had so many and raisers but he wanted to do something that made sense at age 20. Luckily he wore out at 128 tris (mainly on his own) that fall. But back to my tri~I fell off my bike and did actually do some serious injury to my left arm but only a hematoma. We kept going and the next summer my daughter joined in too and no falls. They pushed me up the small hills on the running course and I got first pace in my division for over 65's. There were only two of us but I did win by 7 seconds.
Enough for now and I can hardly believe I did those tris not to mention leading my swan song trek in May~~a high altitude trek in Nepal. Was talking to my SIL and her partner today who came on the trek (on Skype) and we all said we did not think it possible. They are Kiwis and my husband is with them now.
Who knew I was already metatastic when all I thought at the time was "shit, lymphedema."
Quite grey out today and I have yet to go out in it but if I don't go for a short walk it will be dark grey. You have both motivated me and I look forward to meeting others on this thread.
Cheers,
Marian
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Sadiesservant, I will be at BCCA itself until Nov. 28 but will be close by tomorrow aft at the hand clinic and then Thursday/Friday at physio~~I got referred by my MO and I am hoping for LE relief.
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Looks like our timing is off again Marian. I don’t have an appointment yet but suspect it will be November 30th as that will be two days before my next round of Xeloda if that is my continued path forward. I may have a follow up with the RO, not sure.
Ioana, you mentioned some time ago that you were reading an integrative oncology book. Which one? Just cracked the 2009 edition by Abrams and Weil. Bit dated but interesting. I believe at the time I was reading Radical Remission. I found it a bit light, not enough scientific rigour.
🧐
Wishing you all a great week. Pat
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Welcome Maria! We are happy you found us. Liz and others - I have been felled by a pulled chest muscle after coughing so much during the flu. When I had chemo on Wednesday they sent me for an xray believing I had cracked a rib. Nope, then spent next day at ER with chest pain finding out after a CT scan with contrast, that I had pulled a muscle and have a sticky lung. oy Tonight I am eating homemade Kung Pao chicken from my brother's Thai GF and her sister who lives in HK. There is a French rose whispering my name, which may call for a wee sample.Our thanksgiving will be most unusual as we are having Thai chicken (from my guests) and honey baked ham bought by me, potatoes and gravy courtesy of my sister along with a pear pie we learned to cook on our tour of France last year. All are welcome, just wished we lived closer to one another. ::)
Claire recovering with a vaporizer
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lalady1, thanks for the welcome. Eclecic menu for sure. On one of the other sites last night it was a long thread of pizza or not. Guess what I ordered and picked up tonight in rainy Victoria? Mine is way better but this one was easy. My husband would say I was puttering today but I felt it was actually work and I even went for the short walk referred to above and in pouring rain too.
Sadiesservant, let me know even impromptu when you are going to BCCA. I am 5 minutes away. Are you working full time?
Marian
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Yes, working full time so my trips to the clinic tend to be quick in and out and then back to work, thankfully. Less so when I was on Taxol. The Benadryl knocked me out so I was a bit useless for a few hours!
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Claire, sorry to hear you are struggling. Not entirely sure what a sticky lung is though. But, as always, nothing keeps you down for long! Enjoy Thanksgiving but... only a taste of the rose?
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Marian - you found us - all holding on with one hand to a glass of red and with the other on Liz' thread. 😊 Well, you enjoy two of my fav things - water in any form and walking.
Bugger not an apron?? - I thought it was a brilliant idea.
Claire - could it be costochondritis - is it tender locally and do you remember how it started or just work up with it type thing? It resolves by itself - are you able to use a nonsteroidal gel - locally - Voltaren comes to mind. I say that becuae my undertaking is that CT scans do not show up ribs well let alone intercostal muscles - assuming they were ruling out cancer rather then making a diagnosis....supergood of them 😊
Pat - I could never imagine you sitting still even for...just a moment. Is that a July Andrews song? No no no - Hello Dolly.
The book was Anticancer A new way of life David Servan Schreiber - not heavy or detailed but not entirely quack either, some interesting references - I liked it. Jury out on moving furniture while having Lumbar mets 😱🍷
Claire Yumm on the menu ...yes being closer, would make for one nteresting evening...
Hugs to all,
😊🌷🐣
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Claire, I don't know what sticky lung is either, but doesn't sound very palatable. Yea rose!
Pat, how's Madame X treating you? I'd guess that will be my next stop on the treatment train, hopefully not in the near future.
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Hey Cive.
Hoping that Ibrance keeps things beaten back for you for a long time but Madame X is not too bad so far. For the first time since starting I have some nausea this morning but that could also be from the rads. I think one of the things I struggle with is having to take so many pills twice per day plus the pills for the bones. I feel like I spend a lot of time juggling meds. Makes it hard to forget why we're here!
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lalady1, I had to go backup to check on the red~~rose~eh! Wildplaces I did add red to my pizza dinner.
With my first coffee of the day I sat down to read a return email from the head of radiology at Vancouver BCCA. He became my buddy (he would likely not see it like that though I know he took a serious interest in my case in early July~~he happened to be in on a weekend and the MRI scheduler was trying to figure out what to order and he spent an hour on my file) in the summer and it was he would pass on info as each test was done and long before the reports would be in doctors' hands. Anyway, I got back the report on my Nov. 10 CT scan with contrast of chest from my MO on Thursday and it just was not clear to me. Thus (and with the knowledge of my MO) I emailed my buddy and he wrote back today. Too much info yes I know but bottom line was he explained it in more detail and nodule (not a tumour as only 21mm x 18mm) is almost same as Aug. 5 when it was 21mm x 19mm.
Sadiesservant, full time~~you are amazing! Wildplaces do you also work full time?
Onward to a yoga class then a consult at the hand clinic.
Marian
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Okay, I have a need to whine as I am officially discouraged today. I received my appointment card from the Cancer Agency for my next follow up after completing round two of Xeloda and I am once again seeing the substitute MO. This is the part of the Agency I hate, when you get punted from physician to physician when your regular MO (or RO for that matter) is unavailable. I don’t mind once in awhile but two appointments in a row is a challenge I don’t need.
The problem is that I have a boatload of questions to discuss with my MO (possible biopsy, alternate scan modalities such as PET, integrative care options, etc.) and have been holding off until I saw him. Now it will be at least another month and I’m not sure what to do. I just feel the appointment next week is a waste of everyone’s time. It’s no wonder patients don’t tell their doctors what they are doing outside of taking the cancer meds.
I’m sure I will bounce back but tonight I am tired and emotional about this. You start to understand why folks doubt that their oncologist is really invested in helping themto beat the odds. Sigh....
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Marian,
Yes, I work full time.
Wishing you ALL all good things,
😊🌷
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