Shadow in chest is recurrence
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Jojobird,
Firstly you are very welcome here. Always know that. You will see already that the ‘ Shadsters’ (have just made this up, but it kinda fits from those who are members of this “ shadow is recurrence thread” ) are feisty, caring and knowledgeable.
Pat makes a lot of sense in her post and the others too. Don’t go giving up yet and yes you are Oligometastatic which is a positive.
Take the time to talk all of this over again. It makes sense to have the chemo and then revaluate. You are likely to be in a very different position then.
Those of us that are stage 4 are always at risk of spread but what is not know is how well you will respond to the treatment and how quickly you will progress. Surgery has already been mentioned as a possibility.
I hope this helps in some, small way. Thinking of you fellow ( and new) Shadster!
L x
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Can you guys offer any advice about ear infections please. My hearing is greatly reduced and muffled following last week’s virus. I also have terrible tinnitus in both ears. I have just taken 2 days worth of Amoxicillin and so far no improvement in hearing, but no pain or discharge.
Had a snotty e mail from work and am going back tomorrow when really I am not well enough.
Some people are saying that it could be weeks before I can hear properly again. HP now been delayed again. This means Iwill have to have the loading dose on May 4th now.
Mood in the sewer. Considering coming out of my job because it is one infection/ prob after another and the stress of e mails when I am at home off sick.
L x
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Jojo,
I had Taxorete when I was dx in 2014. I was stage IIIA then and the dose might have been a bit stronger than what stage iv would be given. I had bone pain and lost my eyebrows and eyelashes (hair was gone with the first part of the chemo regime). I had three rounds of Taxorete. I was given ice to wrap around my fingernails and toes during the IV infusion but other than that I didn't have any other issues. I also had to do baking soda rinses (multiple times a day) to prevent mouth sore and it worked. The side effects may be less for your dose but overall it wasn't bad.
As the other ladies have said you are most than welcome here and there is hope.
Liz - I haven't such a bad ear infection. I had to use over the counter ear drops when I was having pain in my ear.
Hope everyone else is doing well.
Hugs.
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Liz, don’t know what to suggest. I once came back from Brazil (I was doing international work at the time) with an ear infection in both ears. It was brutal, and to be honest, a bit scary. I couldn’t hear a thing for two weeks. Ioana may weigh in but I suspect that if you don’t see relief soon you need a different antibiotic.
As to work, don’t let their bullying push you out of a job you love. You, and you alone, will know when you want to step away. This has to be about the best decision and timing for you. I don’t think that time has come yet (but could be wrong). This requires some soul searching and not a knee jerk decision due to a stupid infection. Hang in there!
Hugs to all. Pat.
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Liz, how serious would the situation be if you did leave your work? Would your family be able to handle it financially? If yes, then maybe time to sit down and weigh pluses and minuses. You are so young but also may need to take time now to love yourself and those around you despite the loss of your income. You love your job as a teacher and your students benefit from you but right now is your life and health worth it all?
Sorry Pat and Liz, I got name wrong earlier tonight and just corrected it.
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Liz,
Why are you missing out on your treatment ?? Do you have a fever?? Any signs this is systemic and not localised?? And here comes the freaking FBI - who called her?
Ok - viral infections are horrid and tough to get over but if you were sick last week and it's your ears you should be over systemic issues by this Friday - just double check with all your symptoms and your oncologist not his nurse whether they really mean to hold off your Herceptin.
Amoxil does not treat a virus - it is given to prevent a superimposed bacterial infections in the context of a compromised immune system - I am not fully on board with that kind of practice the lit is not clear on benefits versus side effects - if you started Amoxil you should finish the course.
Find a good GP - they are rare as hens teeth.
It will take a while for the symptoms to regress - and there is not a lot you can do about it except take excellent care of yourself. I echo Pat's comments on work - don't give it to the bastards - if you have to make it a game, do so - I mean it - what is the worse case scenario - they fire you - who the duck cares - yep, I can talk like that - but really don't ! I can see a thousand reasons you would want that income ( last retreat included ) and you might as well milk it. Liz there is nothing fair about this - so just play it. Do what you have to do to ignore their emails - just don't bite into it. It's NOT a reflection on you it's a show of what wretched human beings they are. Enough on that???
(()) to all
😊🌷
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Hi everyone,
I have woken up and still cannot hear properly. Today is day 3 on the antibiotics. The nurse ( not GP) who assessed me said the ears were very red with white areas indicating an infection and a piece of wax in one ear. My biggest fear is that I have dreadful constant tinnitus and that I will be left with this forever.
I didn’t sleep well and so have told Trunchball that I am going in for 9.
She knows I am considering part time now.
Thanks for the support guys.
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will query the need to delay treatment again. Maybe they want the ear problem resolved and to be off antibiotics before starting up?
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Jojo
How are you travelling - I asked Di this a long time ago and it caused some confusion. But will tell you that story another time.
So chemo...
Yes you have triple negative breast cancer and it's recurrence means that you have chemo and immunotherapy options. It is shit - the milder hormone treatments and targeted stuff not an option.
I think the number 2-3 is pessimistic - I would double that with the thought that after ...anything can happen. You are of good health otherwise, you have a supportive family and some means to explore treatments, you love your family - those things DO count.
In the immediate future you need to face chemo and I echo Claire - you will probably end up having a systemic treatment. Where you go after depends on how you respond but surgery and immunotherapy ( includes vaccine trials) should be on your watch. If you follow the Liver mets thread Zarovka and Cure-ious ( both researchers and ER +) post on immunotherapy trials and their posts are solid. Do not do what they do ( obviously!!) - everyone has a different path,and sometimes your life needs, influence that path - just earmark the trials. For example
The NKT 214 is interesting - look it up on clinical trials.gov for the future.
Pat said it ALL on work - just sit it out while you have the first months of chemo and make a decision depending on how you are responding and how you are feeling. Don't close any doors - we women have a bad habit of always doing the right thing - HA!!! just take care of yourself and work will work itself out as to what is best for you.
Children - I have one, 8 ( 6 at diagnosis) single parent. My decision has been that I would never breach it in detail with him until I was months, 6 if you want a number, close of death - granted he is younger and I am Stage 2, but I had a shit scary scan and those thoughts crossed my mind. For 14 I would say be honest but don't give too much information, just answer questions honestly over time and keep the mood light. You might see her end Uni you know, or more - so one day at a time.
Finally a word on your husband - I believe it is harder for those you love us to watch us.
I profess to know NOTHING so would not be offended if you thought so ( I might take offence if you disagree with my wine choice but on cancer and life no one really totally gets it) - please know that we are here for you in our small way - so come to us whenever you want/nee to.
Hugs to all,
😊🌷🐣
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Can you see your oncologist on Friday even if you don't get treatment??
I know it means going into York ? Just ask at least you know you have done your bit.
So the nurse thought it was bacterial ???
Offf not convinced to be honest ears get a bad wrap here too - outside ENT surgeons few people have a clue.
Bugger Trunchball the universe will take care of her. Part time might suit but wait until you settle this
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Punctuation ahoy ...
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Di,
When you can let us know.
Hope I could do a little better for you.
You were right there with me.
😊🌷
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Liz,
If you are still on line ( and not on the way in...) - biggest hug - off to the chooks I go on Anzac Day.....
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Good morning.
Thank you again for all of the support. It's been very difficult to keep my emotions in check these past few days. And heartfelt thank you Wildplaces and everyone else for those very hopeful links.
Di, I am thinking of you today and tomorrow and hope to hear what the onc says about the lung met. I stand with you in the fear, anger, grief of this.
Liz, I have no words of advice for an ear infection except to repeat what others have said: self care, and with viral infections, unfortunately the symptoms must be ridden out until it settles. And I am sorry you're dealing with nasty emails at work. I don't know the history of your job situation, but do understand the stress of an uncomfortable/hostile workplace, and am wondering if the option of part time might be the direction to go. What people don't understand is the difficulty of keeping emotional composure when a life-threatening illness lurks at your door.
In a similar vein, I'm having to suddenly think of work and life choices. I start chemo on Friday morning. I have to take yet another unpaid day off, since I've run out of sick leave. I'm planning to work until the end of the school year (am also in education), and then return part time next year. I think. Or, if the chemo doesn't work, I'm going to take early retirement. These are the choices I must consider. Or disability? Which is better, would leave my husband and daughter with more financial resources?
I'm not looking forward to Taxotere, though Taxol was a relatively easy process. Am hoping they are similar. The doc said it's still a "local recurrence," not a metastasis, and that we have a "window of opportunity" right now.
I'm still struggling with depression, though, and am finding that I may need to increase my medication dosage. Am still functional, but everything is grey and colored with despair. Hope is there but I also know the statistics. It's a constant process of listing to one side (grief), then the other (hope), but not finding much ground to land on in between.
Love out.
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Evening all,
A fairly quick post ad I am about to go to bed.
Jojobird- yes a local reoccurrence. Hold onto that. You can do this. Ignore statistics on survival as everyone on here will tell you this is an individual disease. Stay positive if you can. Being a local issue and out of organs is good news! “ window of opportunity “ is another positive thing to come out of an oncologist when they are notoriously matter of fact.
Ioana, you are just the best.
I think I may have melted Trunchball’s heart. ( my deputy head) she was very kind to me and the head of dept who sent me the e mail apologised to me!!!
Ears still blocked. A different doc says they aren’t infected and will clear eventually. Steam inhaler etc!
Will catch up with the other news. Di- we are with you x
Liz
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Hey Liz.
Glad to know the day ended on a positive note. About time that your deputy head got it together! Sorry the ears continue to be a problem but they will clear.
Jojo, as Liz so nicely put it, there are a lot of positives with your situation. It's scary regardless but it sounds like it is still very treatable. Hang onto that. Liz is right... oncologists don't stick their neck out unless they are pretty sure that there is a chance for success.
Ioana - you are the best. Meant to respond to your earlier post to say that you never need to be self conscious. I always truly appreciate your perspective on things. Hope you enjoyed your Blanc de Blanc.
Hugs to all. Pat
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Jojo,
I had written you a post but thought too much too soon..I was wrong to delete it
You are So tough!!
This is the info from
Immunotherapy and vaccine trials should be on your radar - don’t dwell too much/or waste too much time on it - just keep a file of good short list stuff - you don’t have understand it all - snap it and put it under options.
I am at GC botanical gardens - short break in my day - she came about 5 cm from my hand and coffee - made me think of courage under fire
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Pat and al,
The sister to BCO in Australia - is BCNA. I don't post there but when I was at Kingscliff and had some down time thought I would start a thread on Diet and Exercise in their Health and Well being section - WOW - there really are kangaroos 🏃♀️ ng around the paddock down under!!!
It caused the most horrid backlash on exercise, although much of my opening was on food - to the point where angry women posted - don't blame the victim etc - the mods had to step in - did so poorly because the site is Facebook launched ie so you get points for popularity.
Clearly MOAA ( Med Onc Australia ) have a lot of work to do.
I am a bit more weary of impact of my posts - although deep down my sentiment remains ALL women need to be told the best available data, and respected for the decisionsthey make - and sometimes that is very hard because BC is loaded with emotion at all stages.
I know I am safe here.
And I don't get offended easily - I just was speechless and sad for us to be honest to get a glimpse at the size of the public education task awaiting...
(())
🙂
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Yes, we are all safe here. And I agree, it can be challenging with the super charged emotions. But ultimately it’s about support and respecting each other’s opinions. As you know, I try to steer away from threads with too much “anger”. I get the anger but, in the end, it doesn’t do anyonemuch good.
And I normally have a pretty thick skin. All suggestions welcome. Of course, I may not listen.... 😉
Hope you enjoyed the wine. The bird is beautiful. Reminds me of a little Brazilian parrot that decided to adopt me many years ago. Always wished I could have brought the little guy home..
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Ohhh Pat - you got it. Thank you!
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Morning all.
It's another beautiful day here in Victoria. Our weather is bouncing around like crazy, going from wet and grey to a record breaking temperature day yesterday. But gotta love the sun! Unfortunately, it's all supposed to change tonight and we will be back to rain tomorrow.
Thought I would post a couple of pictures showing what keeps me busy. I love the garden this time of year - everything is so green and lush.
Back garden.
Rhodo in bloom.
Side garden. And finally... front garden.
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Wow Pat! Send me a PM with general area. I am on Gonzales Hill but no grass as mostly on bedrock. Weather has been perfect for past 3 days that my good friend who let her husband in late Feb. due to CJD has been here~~first "away" since his death and we have had such a good time. She brings me coffee in bed and I will miss her. Sorry to hear about rain though.
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Oh Pat - bloody brilliant - what a great place to be in! Love it!!
Sadie, that garden and a glass of wine comes very close to my idea of home paradise...
Thank you for posting - really liked it.
Enjoy!
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You can just make out the deer fencing at the front. 🙄 They also keep me busy!
Sadie off to the vets for a checkup this morning and may take her for a walk at Butchart’s Gardens if the weather holds. We’ll see how the day unfolds.
Finally starting to book excursions as well.
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Good morning beautiful ladies,
The house finches are singing and coffee is brewing - it's already a good morning right there, isn't it?
Wildplaces, I can't thank you enough for posting the trial info. I've been to the clinicaltrials.gov site before, but your posting re-reminded me of it and I've spent a good hour sorting through some of their links, and already contacted one hospital for follow-up. Many, many thanks.
Sadie, your garden looks amazing, so beautiful and green. It looks like you put a great deal of time and love into it - love the pictures. They're inspiring! In a similar vein, my daughter and I cut up old cat litter boxes and Costco laundry boxes, painted and cut holes into the bottoms, and turned them into planters. We've got strawberries, tomatoes, squash, and some flowers ready to go. Here is a picture:
You can see that the rest of the garden needs a lot of work, but it's ok! In the back, to the left, is last year's upside-down 2-liter bottle tomato garden, which was really fun and turned out a lot of cherries. Also, one of the pots I freehand painted from a Marimekko design I love called "unikko," and my daughter painted the white one, with little black cats and tulips. The back yellow pot was a plain rust colored one that I painted just for fun.
Liz, that your boss apologized is big! That by itself can melt the ice, cause a shift in the relationship that helps heal the anxiety of worrying. I hope that continues. And no infected ears? That's great news!
I also want to add to the idea that the safety of expression is so important. I was in a support group in which we had a wide range of strong feelings about sugar, treatment options, conventional and alternative paths, and what I carry with me is that cancer is no different from life in this way: We choose how we live, we choose our treatment, and when the time comes, we hopefully can choose our dying. As women I feel it is especially important to honor each of those paths, whatever they may be, as so often our voices are unheard, and in cancer so much is taken from us. We have the right to accept or reject, but always with kindness and a respect for human dignity. Respect out.
I had my first infusion of Taxotere yesterday. I entered the clinic with a horrible migraine and it worsened during the infusion, but they were very gentle and understanding. My dear friend helped and sat with me. The infusion went well and I started Xeloda yesterday, too. But I got sick from the migraine and had to sleep the afternoon away. Now it's off to a brain MRI next week. Dear heaven how I hate the MRI machine. Thank goodness for Ativan.
It's another day. Grateful for this board, for the singing birds, for the small hope every morning provides.
Love out.
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Hi all,
I have caught the bug for pics of gardens and inspired by Pat and Jojobird here are a couple of my English garden in the April rain.
So my update is that I am going part time from Sept. it could be as low as 2 days but guess what- now that I have made the decision, I am happy and looking forward to spending more time in the garden, with family, at the gym, friends, ....
Today I am still pretty much deaf although I detect a little more hearing in one ear than the other.
It is horrible. I feel disconnected from the world and I wonder how long this will remain?
On this thread we are always respectful to each other. It kind of shocks me to hear that it isn't always the case.
Jojobird- you got through the first T treatment. Well done! That migraine will be stress related. You've taken the first step. You are amazingly strong.
Di- how are you lovely lady?
Claire, they are laying the table for our decadent tea!
L
X
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Jojo all of these ladies will welcome you with open arms as they have me. You stay positive and don't give up. Sounds like your Dr has a great treatment plan setup for you. I know it's scarry as we're all in the same boat. Vent all you want. We're here for you!
Liz so sorry to hear about the ear infection. I do hope it is starting to get better. Your headmaster sounds like a real inconsiderate b****. I was happy to hear that she apologized. I don't know what I would've done if my work treated me that way. My work went above and beyond to accommodate me. Even when I told them I was going to go on disability they wanted to retro fit my machine to keep me at work. I still keep in touch with everyone at work including HR.
Loana can't thank you enough for the beautiful beach pictures! Felt like I was there. I like that you speak your mind! No offense here!
Pat your garden is beautiful! Weather here is still chilly and wet. I can't wait for next week. Temps are forecast for 70's fo 80's and sunny. About time. Don't you worry about cost of your trip. You go and enjoy yourself!
Marian glad to hear your friend came to visit you. You both probably helped each other to deal with the issues you both have.
So since last post I had a pet scan. Pet scan confirms breast cancer metastasis to lung. It is 2in x 2in. Also still see the pneumonia or could be inflammation. There is a lymph node that looks swollen but it didn't light up on pet scan so Dr isn't sure if it is cancer. Dr said since cancer metastasized to lung I will never be in remission. She said my cancer is so rare and chemo resistant that it would probably come back again. I will probably be on maintenance chemo the rest of my life. I start high dose radiation 1000 gray May 11 every 3 days. So radiation May 11, 14, 17. Afterwards I will get a 2-3 week recovery then do chemo (taxotere). At least I'll get to enjoy my birthday on 8th before I start treatment.
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Di, you were there. I was a little bummed because it was a good beach and I did not think I did it justice the first time around - my son was in the water and all I could say when the skies changed - we are getting out - got to get Di's photos. I am not sure he got it but he is used to his mother's excentricities. So you were there. Just after - on return to the hotel - we spotted one of the paraOlympians - above knee amputation and full visible prosthesis in shorts - I was speechless, not because of his injury that bit I work with, because he was one of the most attractive men I have seen in a long while - 6 foot 2, deepgreen eyes, wavy brown hair with just enough surf in it. Ahhhh....
Well enough on my drooling over the drop dead gorgeous...
Ok 😊 so you are a Taurean (My only friend from primary school that I still keep in contact with is on the 13th).
(())
Ioana
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Jojo
Love Marimekko - I have always wanted to get an outdoor table cloth made of the pattern but it's not cheap and I have put off...maybe next summer.
(the trial stuff was a Cure-ious post - she has a PhD in biochemistry? Biology? I think works in a cancer lab, she is HR + Ve but keeps a close eye on all immunotherapy - I guess we all think a combination might be a better solution - but which one... nonetheless I search her posts, and keep some info. She is helpful and earthy - posts on Ibrance and liver thread. Great to hear that you have made calls as possible plan
Upside down tomato garden - will have to try that!! Thank you 😊🌷
On a different note
A while back Liz asked for simple meals -
The above is probably one of my best emergency pantry freezer meals in under 30 minutes. It's not haute cuisine but it's relatively healthy and easy to make.
The fish are Auldi ( not sure if you have it - Hoki New Zealand fillets crumbled but oven baked.)
The snap frozen vegetables are just steamed with butter ( but olive oil work too) and the mass of yellow stuff is polenta - which I do in the microwave - with a garlic and olive oil salt emulsion ( nutriblend - and I keep a jar for marinades, dressings in the fridge).
In the similar vein I do a polenta pizza - use cooked polenta for base - tomatoes sauce and then toppings of your choice - about 15-20 minutes in the oven.
I follow both berries and yoghurt for dessert with a few caramelised walnuts on top.
In another world it would be a piece of baclava and coffee. But I don't buy that desert often because although I am not Turkish, I do adore it.
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