Shadow in chest is recurrence
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Liz,
There are submandibular lymph nodes but they are under the jaw ( mandible) line.
Painful is usually a sign of infection not (again ) usually cancer.
Are you sure it is a lymph node? Do you have a sore throat/temp??
Is it a cyst of some kind instead? Sebaceous cyst ?
You must (sounds ominous ... 😱😳) try and find a good GP - they are rare and priceless - so hunt by asking around now. They are often a lot more broad based and knowledgeable in this stuff than a person who specialises in one area and whose expertise field is narrowed by exposure ie carpenters know carpentry, surgeons know surgery, oncologists know chemo.
Happy you are trying to take it one day at time.😊 me too!!
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Hi everyone! Hope everyone had a wonderful Easter and holiday weekend. I'm doing ok. Still battling the phantom pain. Was nice to get outside some and enjoy our beautiful weather we have been having here. It's been in the 70's and 80's and sunny. I see my oncologist on the 27th and as much as I hate to I'm going to ask if I should do another round of chemo to be on the safe side. I go to my place of employment this friday to sign my papers for quitting work. I'm going to miss all of my co-workers so much. Tomorrow i go to be fitted for my breast prosthesis and bras.
Liz I'm praying petscan results are positive there is no spreading of cancer.
Ionana hi! Yes at first I didn't understand question about traveling but after you explained it to me it made me laugh. The language is different than what I'm used to but that's ok you can teach me your language. Life is a learning experience. It's so wonderful to have friends from other parts of the world. Yes I said friends. Even though i haven't met any of you i feel close to all of you.
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Hi Diane
Wonderful to hear about your weekend. Ioana and I have been clucking like mother hens over you, but it's great that you have been living life.
I consider usto be friends too.
Will post again soon
L x
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DiV, will the future include a prosthesis for your arm as well? My friend lost both arms in a childhood accident and she wears bilateral prostheses. She has been a school teacher and is the mom to two beautiful daughters. She does almost everything with her feet and toes, and showed me how to write using my foot (it gave me a cramp...!). She is my hero. So are you, by the way.
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Sbelizabeth hi! That's awesome about your friend she is inspiring. I can't have a prosthesis due to having no shoulder to attach prosthesis to all i have is my clavicle. I can get one just for looks only but don't want to deal with it seeing as it won't be of any use. My attitude is, it is what it is.
Liz hi! Great that everyone is laughing that makes happy. I think i told you all how i made my bed here is another funny story. The way i put my bra on is i put the left strap on door knob, put back against door, grab right bra cup swing around grab left bra cup from door knob and hook bra. Got to be imaginative...lol
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That makes sense, DiV, it would be difficult to attach a functioning prosthesis without an arm stump. But from what I've seen lately, the advances that are being made in prosthetic science are mind-blowing.
Another heroic attitude--"it is what it is"--couldn't be truer. The battle scars that we all wear, whether it's from a lumpectomy or saying good-by to your arm, are nothing to be ashamed of. We are warriors.
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Liz,
This makes me smile.
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I tripped across this survey by Bestbird from about two years back.
https://community.breastcancer.org/forum/8/topics/828854?page=1#post_4321608
It was fascinating to me but I will leave you ladies to make up your mind.Particularly the depth of complementary oncology and supplements used by some.
Claire,
If you are still following - I know you are looking at Everolismus - there are many many more experienced/wise than I - but (aside from some papers on the synergy between metformin and everolismus) I found a bit of work on honokiol:
https://www.ncbi.nlm.nih.gov/pubmed/18588872It's the second last sentence of the abstract that got my attention.
There are other papers but I picked this one
Clearly you can't just dabble in this stuff - but fascinating.😊🍷 ( ahhh that is one resveratrol for the day )
Hugs to All
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Ioana- fabulous cartoon. The words shout out to me perfectly right now.
Today, today, today.
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Liz - rooting for good scans. Please alert us. Div - your bra story is hilarious. Ioana - thanks for the tip - honokiol. Does big pharma manufacture it? I start Afinitor + letrozole next month, since scans showed progression on Ibrance. But I did get 17 rounds in first.
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Wildplaces I too love the cartoon. If i had quit i wouldn't have any funny stories to tell to make you all laugh. Here's a new one for all of you. Today my Aunt took me I for breast prosthesis and bras. After i was done the girl asked if I wanted my aunt to come in. I embarrassed the girl and opened door and asked my aunt if she wanted to see my new boob. She in turn said why did you get bigger ones. We all cracked up laughing.
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Every cloud has a silver lining! Glad you had a laugh at the bra fitting Di!
Claire- I hope you have huge success with the next line of treatment.
Ioana- a week now to get body and soul together!
Have planned a dinner out next Sat at a new restaurant for all the family. Might even risk a small glass of wine- ha!
You guys keeping me strong in these final days.
L
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Hello Claire,
I am wildly on foreign ground here but I will tell you how I came across it and you go from there...
As you know I have been following a bit of the Ibrance thread. Z posts well. In Feb she mentioned that she was put on honokiol (clinical synergy) 500 mg a day, Turkey tail ( horse doses) and home made Bulgarian yoghurt as a probiotic to pump up her immune system in terms of WCC.
It was also on Bestbird list of supp - posted on the Outliers thread I mentioned before.
I think it can have a mild sedative effect so I am trying it at night to see how I feel with it.
I do not see a complementary onc yet - so much went on in the last 6-8 months but it is on my list of things to do.
I take liposomally encapsulated curcumin, Vit D, Vit C 2000 mg, calcium every second day, aspirin 150 mg, and a multivitamin.
( I did up my zinc and Vit E through the rads and dropped the Vit C).
I also eat home made yoghurt and maybe two or three times add a strong probiotic.
Do I think it makes a difference - is the million dollar question?
I don't know. I believe a good diet (which is hard to maintain daily) and exercise and activity makes you stronger and more likely to withstand the side effects some of the onc drugs.😊
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Claire,
Ok I have just looked up Miraval Rose - quite a little treat 😊
Now I really need to brush up on Californian wine ( I understand the above delectable drop was made at the Chateau in Frmce...)
Lovely bottle too - happy for you.
My grandfather made wine so I enjoy learning about it...and have planted my first vine during chemo.
Ask me next year if I I even managed to yield grapes.
Di - keep the stories coming - love them!!!
Liz - please drink two on Saturday - you are far enough starting to be able to - it sounds like it will be a great night!!
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Liz - look around your busy dinner table Saturday night and see your BCO friends toasting you too! So glad we could meet, but sorry it's in Cancerland. I may return to the UK next year, so expect a shout out for tea or a glass of something wonderful together. Chateau Miraval is owned by Brad Pitt and Angelina (subject to their divorce) and it's one of the nicest French roses along with Whispering Angel. We had some for Easter dinner - so please enjoy a glass or two! Ioana - lovely name for lovely lady - merci for Z's tips on honokiol. I'll try some, but pass on Turkey tail. My mum was raised on a farm, so we don't eat them - they are rather dumb and dirty birds. I just ordered a Kerloo grenache online, since it was so good on my Seattle visit. I will send pics of good stuff I encounter in the Baltic. Div - you are so funny. Bigger boobs and all! My left implant turned rock hard post rads so replaced the implant and downsided right one to a C cup to match the A cup on the other side. lol on lopsided -I use a silicon pad. Have a great day ladies!
(()) Claire in sunny LA today
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Hi Claire,
Thanks for the chuckle. yes... turkeys are stupid birds!
I'm glad to hear there is someone else who is unprepared to give up their wine. I have read several posts that say alcohol is a no no. Gasp!! I do enjoy a nice bottle of wine and after several months of being dry (the pleural effusion and chemo made it taste vile) I vowed to drink "the good stuff". I have several bottles in my cellar that I have been hoarding which deserve to be cracked.
Cheers. Pat
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Hello ladies
My onco has just called me with the results of the PET scan. So this post is about that and I will post again about the lovely wine amongst other things.
I am oligometastatic. The parasternal mass is now 3.5 cm and was 2.9cm on Feb 28th. Cancer under 1cm does not show up on a PET which is why systemic chemo needed.
We briefly discussed stereotactic rads and he said I cannot comment because it wasn't his field but that he could put me in front of the right people. But he added that Sheffield multi disciplinary team were negative. SSin UK- you may be able to chime in here and I will PM you as the oncologist suggested this mass is an internal mammary LN and this type of rads is up and coming/ controversial. Pretty sure London prof will be aware. York onco said it hadn't drained to underarm but chest instead. I later thought that it wouldn't because I had axillary node surgery???
Here's the rub: I have chronic sinusitis, picked up by the scan and this lovely man has called my GP to ask for immediate antibiotics. He doesn't think it will delay my chemo.
Phew.. Head spinning. All comments welcome.
I want a glass of that wine guys!!!
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Liz - yikes. I won't pretend to be an expert here, but when I had MBC sternum mets my onc wanted to start with taxol except I was allergic from earlier chemo in 2013, so he used Ibrance+faslodex+arimidex instead. You are younger and may tolerate a systemic IV chemo very well. Please keep us posted on what kind of chemo he recommends. There are a few to chose from and all have different SE's. We are here for you. Have that wine on Saturday.
(()) Claire sending gentle hugs
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Hi Liz,
I need to be brief as I'm working from home today but great news that it is limited to the one place! Keep pushing to make sure you explore all options given your situation.
And you go for it with the wine while it still tastes good! I'll raise a glass for you tonight as well.
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Hi Claire
It will be THP- yes yuk but if it works...
Yes wine is in order! I am 46. Shortly to feel like 96!
L x
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Hi Pat
Thank you. I want to PM you later but like you have had to rush to post around picking up the antibiotic for sinuses.
I will pm you. Keen to know how you're doing my friend x
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Claire and all of you...
Open invite to UK
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Liz - THP is super powerful and will kill this chestwall met. How many treatments are planned? You are very courageous. Did you look into saving your hair with cold caps? They saved my hair.
Either way, your vitality and good spirit and love for your family will get you through this. And your BC sisters are standing tall with you. 0 -
Hi Claire
I am not feeling very brave but I have no choice but to proceed and I feel a little more hopeful tonight after a good scan.
Unfortunately this chronic sinusitis is a complication I could do without and has scary repercussions of its own. So I hope that amoxicillin antibiotics will clear it. I'm resting up, eating well and exercising. Ioana has stressed the importance of these things.
So grateful that you are standing with me. Feeling quite unwell tonight. Plain bad luck that this ailment has occurred at this time, I have a week to get rid of it.
L x
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considering cold caps- yes. X6 THP and then HP indefinitely!!!
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Liz,
well - I hope you are taking 500mg Amoxil 8hourly.
If that does not kick it in the butt - serious improvement by Saturday am ask for a stronger antibiotic - I would have preferred the addition of clavulanic acid ie Augmentin or Augmentin Forte - look that up and discuss with GP
The diff in size is not worth a comment - don't stress - one of two things - it may just be the scan modality error or if indeed it has moved a little it's not bad for chemo - the faster they divide the more effective the chemo!!
It is why slow dividing ER positive go to bone and may not do as well with chemo but that is another topic.
Claire,
The turkey tail is a mushroom Coriolus 😉but I agree I am tempted to try the Honokiol and leave it to that.
Pat and All,
Your wisdom and humour are priceless - I think in excess of 2-3 glasses per day has been shown to be associated with greater risk of recurrence but really No wine ahhhh - now now where would we get our resvatrol from??
Enjoy you drop! I will mine!
😊
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Liz,
Two more things:
- you need an ultrasound of your heart prior to starting Herceptin - ask - I would be very surprised if the answer is No
- yoghurt - home made - Bulgarian - and crucifer out vegetables - cabbage, kale, cauliflower etc
- there is a fair amount of evidence that people, with dysbiotic guts ( have asked the experts ( emailed the author of one of the papers) how they define dysbiosis to get no clear answer) nonetheless it would safe to assume most of us using the local supermarket have some degree of dysbiosis acquired over a life time - back to the main point😱😉 - good bugs in your gut help chemo work
http://www.nature.com/nrgastro/journal/vaop/ncurrent/full/nrgastro.2017.20.html
So get a higher end probiotic or BETTER make Bulgarian Yoghurt from culture ( genesis is one brand ) - it really isn't difficult - I will even post you a picture if you like - and it will help with mouth ulcers too!! And if you pop the bugs in,you have to feed the little buggers - that where cruciferous comes in - prebiotic.Seriously now - Ladies - Bulgarian yoghurt is your friend !
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Ioana,
One Google search led me to believe that they haven't given me the right antibiotic. Will chase this up tomorrow!
Need this Yogurt! Eating Greek and adding blueberries, will step up the veg. I eat more fruit than veg.
Up against it now to shift this latest fairground pop up!
Wine ..... 🍷😟😟 it has been 2 months now since I last had the pleasure.
Liz
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Had an echo cardio scan of heart that showed ok x
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Liz,
Just ask if they can pop you on something that is a little more broad spectrum - no easy answers - Augmentin is strong but depending on the dose of clavulanic acid ( forte or not) you may run into mild nausea or worse - thrush - are we really having this conversation??....
The alternative would be a cephalosporin based antibiotic. Call your GP, let them know about the chemo plan day and say you want to not miss the start date because of sinusitis. 😊
❤️ Great, baseline for the Herceptin.
Genesis lab - online, one of the better brands for yoghurt - I use one of the local ones - don't want it sent to me in the post - the bugs need to be in the freezer to be alive... You can make yogurt from plain Greek yoghurt - two large spoons in a litre of full cream milk that has been brought to boil and cooled by about 5-10 degrees - leave in a tall milk pot for about 16 hours. No one knows what bugs exactly we need or how to introduce them - but it's a hot area of immunology/oncology at present. Some kind of prebiotic/probiotic makes good sense.
VSL3 or Vivomixx is one of the therapeutic probiotics used in mild- moderate Ulcerative colitis/IBD with success - enough papers to reach mainstream med - it is expensive and on a daily basis can cause diarrhoea ( great because so can chemo!😦). I bought a box and take one or two sachet a week when I remember - again does it help? Who knows - the trick is to try and stay as healthy as possible for as long as possible.
Drink the wine Liz - make it a great bottle and enjoy!
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