Shadow in chest is recurrence
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Hi All,
It's been a bit quiet on your thread of late Liz. I'm starting to see the other side of this stupid cold. As you said Liz, they are rubbish. You don't feel bad enough to stay in bed but don't feel well enough to do much! Bah. To add to my woes, the Xeloda side effects reared its ugly head with a couple of matching deep blisters on each heal. I could barely walk for a couple of days (Sadie was not impressed) but thankfully they seem to be healing as well. In that regard, the cold might have been a blessing as I could work from home, staying off my feet more than usual.
Lola, how is the treatment going? I agree, sternum resection does not sound like a good plan but radiation may be a great option for you.
Marian, good on you with the trip planned. I am hoping to book something for the end of May/early June but have not landed on anything yet. London theatre district keeps calling to me and perhaps a train ride to Edinburgh. Who knows, maybe I can join Claire and Liz for that cocktail!
I'm back in the waiting game again. Despite all my best efforts at maintaining a stiff upper lip, I do find the time between a scan (had my last CT on Wednesday) and hearing back from my MO very challenging for the psyche. To complicate matters, in this case, I'm not entirely sure what I want the scan to show. My gut, figuratively and literally, is telling me that X is not doing anything for me so in some ways I would like to have a clear answer. Sounds like wishing progression on myself.. gasp! However, I have been having increased shortness of breath again and ongoing discomfort in my abdomen so an explanation would be nice (ideally one that does not involve me completely losing my grip on reality, imagining symptoms that don't exist). At the moment, I feel very much in limbo, waiting for the next shoe to drop.
I hoped I would hear back today but the last scan took several days before it was reported. Given that we are looking at subtle changes I think it takes more time to assess. The question is, if it comes back stable, does it mean we stay the course? We should see clinical response at this point, which in my books would mean regression but perhaps, in this case, that is a unlikely? Is stable what we are hoping for?
Lots of questions rattling around in my brain. Still a couple more hours to the end of the day so perhaps I will hear from my MO. It would be nice not to spend another weekend pondering....
Hope you all have a restful, side effect free few days. Hugs. Pat
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Hello All
In NZ - at sea - limited Internet...back to reality soon.
Marian - lovely family photo!! It was Taku glacier just a tad north of you.
Lola - before you make any decision about surgery Ask to speak/be referred to a thoracic surgeon - I am absolutely Not suggesting you have sternal surgery - I am suggesting you get as much info as possible - no one will operate on you without consent so it's ok to see and talk and ask questions. Even if you are 100 per cent on No, it's still worth the contact for info/opening a door - unless of course you are super busy time wise...
Pat - so it's Faslodex - yes I am stalking you - hugs - bum the SOB. Stable is good. Gosh how I will get drunk when you post regression. And yes it is possible.
Liz, 😊🌷🐣- language...I will tell you more about veins soon, but I like your Dr P
Hugs to all,
Ioana
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Hi Ladies.
Thankfully I heard back from my MO. The scan came back stable again which is good news but it doesn’t explain the increased SOB and ongoing sensations in my gut. So, it’s been decided that we will drop X and move to Faslodex. It’s a bit nerve wracking as it will take a few months for it to work but my instincts are telling me that I will show better results on a hormone based treatment. My MO did say it was unlikely we would see further improvement on X if we haven’t seen any so far.
I have to admit to some relief at being off X. While stable sounds great, I don’t think the scans are telling the whole story and clearly the hand and foot syndrome was going to be a challenge for me. After a week dealing with heel blisters that are still not complete healed, I honestly don’t know how I would have managed to stay on that drug. I typically spend hours on my feet, particularly in spring/summer, walking the dog, playing golf and working in my garden. X’s nasty side effects were going to be a huge problem.
Hope I made the right choice! Thanks for the support.
Pat.
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Hi Pat
So pleased to hear your scan showed you are stable. I also feel relief for you about getting off X. Those blisters sound dreadful and yet you have tolerated all this with such tenacity. As you are stable, who knows though if it hasn't been working?
Hopefully you will see an improvement in the SOB soon. Strange about tummy issues. Could this be IBS or that ole devil stress?
I see my onco next Thur. Yet more time off work- balancing work and being a cancer patient isn't easy. The letrozole is causing horrible aches. It is like having permanent flu. I notice it more when I'm not moving and strangely it seems better when I'm working.
I have questions about the NO from Sheffield regarding rads. Getting answers from Sheffield may not be easy. I'm considering a second opinion on rads. I know it is probably futile but I wanted the chance to have rads because there is a suggestion that aggressive local AND systemic tx could offer the chance of lengthy remission. When I've analysed my feelings over all this I have come to realise that I haven't really accepted this stage 4 dx, so pursuing the stereotactic rads is a way of pur dream to have that slim slice of hope.
I still have days when so wonder whether to put in for early retirement? Conversely, work does give me some normality. I do however have very little me time.
This weekend I travel to Wales for my brother's wedding. Work would not grant me travelling time so we have a 5 hour drive to do at 4pm next Fri.
Looking forward to it!
Pat you hang on in there. I'm thinking of you.
Love to you all.
Liz x
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Hello All,
We are in Auckland - I tried to post yesterday but it ended up scrambled so deleted. Claire spectacular travels and cruises have inspired me but I have adjusted a little for an 8 year old and ...budget and we are doing the big boat thing.
Pat, I will Pm when back on Terra firms or sooner if I can string the internet - we are sailing on Sea Princess - much too big but affordable, well organised and easy travel - lots of yummy food and some brilliant sights so no complaints. Good on stable let's see what Faslodex does.😊
Liz I am with you on trying to get an opinion on rads that you are comfortable with. I have finally got the exact position of your thing - I think it is at the confluence of the internal jugular with the brachiocephalic vein - very high in the superior mediastinum - so it is probably internal mammary breast drainage. You see the internal jugular drains base of neck so to speak ....
Marian - love the family photo - you all look so happy walking.
The shots were of Taku glacier a tad north from you - Alaska.
Lola - think about getting the surgical opinion NOT because one intends having a sternum resected but because it is good to make contact with a thoracic surgeon when you have a thoracic lesion - you never know what you might learn..then again it's more time more doctors...
Hugs to all,
😊🌷🐣
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Lots of activity on BCO today and Pat and I are now on the same Faslodex thread. Pat, I do hope it works for you. SOB plus gut sensations and heel blisters in combination would have most people in bed but you and Sadie carry on. No problems from Faslodex that I can think of.
Wildplaces, what an incredible distance diagnosis and from a cruise ship with an 8 year old no less! Any chance you can do one for me? LOL.
I did write to MD Anderson the other night with a brief description of my situation. When I hit submit it did not seem to go correctly and have not heard back so I guess it did not go. I think I am still in a tiny bit of denial with regard to my tumour that is grabbing the neurovascular bundle. My MO when I asked said even if I were the richest person in the world, there would still be no neurosurgeon who would touch me. I watch too much science fiction no doubt as in some of the movies and shows something as simple as a little tumour in my brachial plexus would re repaired in seconds.
Liz, I am with you on the uncertainty of decision making whether it be them or us. Wales for the wedding has to be a good tonic no matter what.
Back to NZ, I spoke to a friend this week who did a cruise from Oz to NZ and had a great time. My husband is as we speak, sailing solo to Great Barrier Island about 75 NM off the coast of NZ. He is meeting up with old engineering buddies already there. We hope to go there in Feb.
Lola, I hear the east is in the deep freeze again. I am off to Calgary Monday just for 2 nights but I hear it not going to be -30C.
I looked after a 2.4 year old today for 6 hours and I was proud to tell Edith's mom when she returned that we got the potty training under way for the first time. I bought a bright red potty seat and success! I admit to being tired tonight though and the glass of red wine I am drinking tastes good.
Marian
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Marian,
I have a quirky memory - so ...I am correct in thinking you are connected to nursing?
The Liz bit - no ☺️ But you are kind...we have talked about it for while and I could not piece the chest bit with the arm swelling presentation - which would make it more brachial or subclavian...and the fact that Liz was told internal jugular vein which strictly speaking i neck ...so I finally got that bit of anatomy straight in my head.
I know nothing about oncology and less if possible about the immmune system.
I do know from your posts that your beast is axillary ?...in Australia we would get a reconstructive plastic surgeon, not a neurosurgeon as such - maybe someone from the hand unit to look at it.
I am not telling you that it is possible.
I am saying I would be asking plastics oncology first and NOT the breast guys - maybe some of the plastics guys who work with thetumour orthopods in their reconstructions.
😊🌷🐣
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(😊yes the cruise was/is good - left Brisbane so no flights involved - 14 days)
Liz - bugger about the travel time - Hope you Enjoy the Wedding!
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Marian,
You made me think. I know you are tough and you have pain since we met on the pain thread.
Should you contemplate surgery - some debulking - because of pain - Ask to be referred to a reconstructive plastics surgeon - some who deals with trauma reconstruction and/or orthopaedic tumours (I know that is not your diagnosis) of the humerus/clavicle after the orthopods do their bit.
At least you've explored that option....😊
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HI Ladies,
Pat - glad to hear about the stable scan. hope the new meds work better for you and alleviate the sob and all of the other side effects you have been having.
Liz - have fun at the wedding. Hopefully the trip doesn't tire you out.
Marian - yes we had another wave of frigid cold after a couple of days of above zero. My sister's pipe bursted and the my were in Mexico this past week. I found the floor yesterday when I checked on her house. (we are 5 min away walking distance). So I spent most of my day yesterday trying to dry out the water in the basement. I forgot to wear gloves so in the evening my left arm was hurting so much. Her basement is ruined and she has to redo it.
Claire - Thats a good suggeation, however I don't much free time to see a thoracic surgeon. it's busy time as work and I can't miss much more. I didn't even see my BS after all these tests as she has talked to my MO.
The pathology report is back. My Er is 81-90% down from 95% and the Pr is negative with 1% of the cells staining. The Her 2 IHC is 2+ so FISH will be completed. If FISH comes back positive I am out of the trial. Back to more waiting good thing I see the MO on Jan. 23 hopefully the FISH results are in by then.
Hope you all have a wonderful Sunday!!
Lola xox
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Marian kindly provided a bit more info on access to Faslodex. May be a few hurdles as I don’t think my extended health has it on their formulary. We’ll see but I suspect I may be off treatments for a couple of weeks while we sort this. Makes me nervous....
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New year greetings one and all
Culture activity day yesterday gallery for rembrant masters and champagne now with sis
this pic a highlight of village exploring from the Myarmar cruise made us laugh ..the baby was so joyful inlearning towalk with her home crafted pushtoy.Families have little extra money ..no modern markets and no plastic toys were sighted!
Beach weather here north of sydney and toddlers visted for christmas...
Your social activities over the break show how lucky we are
I have found the posts informative on the treatment options that are available
I had great report from onc ..still stable and on letrozole now for 18 months.
Liz ...hope work goes well ..school is always exhausting on the mind now its also the body that needs extra care
All the best to eveyone
BRIGHT IN HOPE
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Pat, at least you are seeing the other side of your cold. Mine lasted an entire month! Bummer about waiting for faslodex, I know it's not approved with Ibrance in Canada, but didn't know it's not approved at all. Will your MO keep you on Zeloda (maybe a slightly lower dose with your HF problems)?
Yeah no tx sounds no good to me either especially since that's what happened before you were on Zeloda. For my second cycle my MO increased me to only1500 MG/day. I am short, 5', but that doesn't seem like it should make a difference of 3 times as much for you.
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It may not take that long for Faslodex. It's approved for use in Canada, just not funded but, as it turns out, when I dug a bit deeper into my extended health plan, it is likely covered after all. I do anticipate a bit of a process getting the okay but hopefully that won't take forever.
I'm off Xeloda but today would have been the start for Round #5 so it's not like I am going months without treatment. The dosage question is an interesting one. Clearly HFS was going to be a problem for me so I anticipate my MO would have had too look dose reductions. Given that we haven't seen any improvement, not sure how it would have played out reducing the dose. I'm hoping that Faslodex will do a better job of getting rid of the mets in my lung. So far nothing is touching my mets in the pleural lining.
Hope X works for you Cive. I hear it's good for the liver....
Glad to hear you are getting some good R&R time Ioana.
Liz, I understand why you are thinking early retirement. This being a cancer patient is a full time job and, quite frankly, there are times when we are likely not at our best in our jobs. I know that when I am waiting for scans or a call from my MO I have zero concentration. However, there is a LOT to be said for continuing to work. It keeps us grounded and provides that sense of normality you mention. It gets me out of bed each morning (that and Sadie). Really, staying in bed is NOT an option for me so I do just carry on. I often wonder how much longer I can keep it up (and also realize it limits my free time) but, for now, I keep going. (And BTW... I like the extra money. It gives me flexibility to do the things I want to do like renovate and travel.) Is there any way you can cut back? That's the strategy I'm working towards at the moment... perhaps going down to 3 days per week.
I hope all of you have a great week. Hugs. Pat
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Hi Pat,
I am praying that you get the approval and begin on Falsodex.
Yes it sounds like we both think about cutting work back in one breath and remainingsteadfast to continue in the next.
I have a oncologist appointment Thur. Am plucking up the courage to ask how long I’m likely to live. I know that I will almost certainly give up work when I have progression.
Back to happier things- my brother’s wedding is Sat. Snow is forecast!
L x
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Liz,
Not sure will get a straight answer to that question. It’s a tough one as really, nobody knows with any certainty. My MO shuts down when I even skirt the edges of that conversation. He goes from being warm and supportive to almost icy. It’s quite the transformation but really, it’s understandable.
While I am certainly not a medical expert here’s what I can tell you. While HER2+ has a tendency to be very aggressive in terms of recurrence, it appears to be extremely treatable. I pay a lot of attention to the stats in everyone’s profile on this site and have definitely noted a trend that the HER2 ladies do well for a good long time. You have shown a very strong response which, in my opinion bodes well.
As to the predictions re: progression. I thought the same thing but her I am, still working. Ever the optimist! I still think there is a treatment that will give me a good run.
Have a wonderful time at the wedding. Snow? Well I can live without that. It was a clear and sunny day here today and I was thrilled to see that it was still light when I left the office. Spring is surely just around the corner!
🌳🦋. Pat
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Pat,
Thanks for your post, as I get out of bed on this dark January morning it is a great comfort. The aches are a challenge! However, we are still working as you say and I am I incredibly lucky to have lots of holidays in my job.
Will post photos of the Winter wedding. It will be very special I’m sure.
L
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Looking forward to seeing the snaps Liz. And here’s to holidays. I didn’t take many last year given that I was off for several weeks after first being diagnosed (off in the winter is rubbish as daytime television is mindless in North America!). As a result, I have seven weeks of vacation time this year. Already planning a trip in May.... 😉
Hope your day goes well. Pat.
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Pat,
The last week of May/ first week of June is half term for me. I still plan to meet up with Claire in London- no dates confirmed yet, but you are welcome to join us. You also mentioned Edinburgh, or have I completely made that up...
My baby niece is due on May 20th too so at some point I will be heading to Wales again. Exciting times.
Much love,
Liz
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Still developing a plan so no decisions yet but yes... Edinburgh sounded like it was doable. I want something self-paced (no bus - I call them duck tours when all the tourists get on the bus single file, get off the bus, get on the bus... not my thing).
I'll let you know as my plans cement. Also need to talk to my MO about his plans for scans, etc. I think it takes about 3 months or more for Faslodex to show it's stuff.
Cheers. Pat
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Hello All,
Anyone hazard a guess where this might be?
I would have not known two weeks ago.
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NZ treated us well - it is very beautiful.
Dusky Sound - not really a sound but fiord - honestly what was Captain Cook thinking...
And this was a first for me - the geothermal area Waimangu Volcanic valley - around Rotorua, North Island.
Back on line. Starting work next week.
Hugs aplenty,
😊🌷
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I read the liver mets thread.
I should not have. Thormbocytopenia is rare with Eliquis alone - there are case reports, hence documented. But what you have now is platelets of 50 (most likely because of Carbo) and back on aspirin of own google opinion - aspirin irreversibly inhibits platelets aggregation ( and last 7-12 days ) so unless you do a platelet bleeding time you won't measure it. So not only is this person now with a low platelet count but she is selfmedicating on the presumption her onc is an idiot and an assholess and making the ones there are there not aggregate as well. Ahhhh...
I think I will close here.
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Saturday just after noon and still in pj's drinking a latte. Pat, please excuse my ignorance about Faslodex but I actually don't know what it is supposed to do. I have a better idea of what Ibrance is to do but not Faslodex so would appreciate your comments. No doubt it is different for each of since this BC is so much individual.
Liz, you will be at the wedding event now and I hope the celebration in lovely Wales was a good one for all. London, Edinburgh, baby niece in Wales~~all nice to look forward to. Little Edith, the 2 1/2 year old I am blessed to take care of often will have 2 siblings in July. It became public this week though I was honoured along with my son and daughter to have the secret before Christmas. Mom and husband pretty excited though they know it will be daunting at times. Having my husband home this summer will mean we can do a lot more to help than I can. Jana's mom died of breast cancer in 2006 when we lived in Saudi and I was with her that day~~I went to almost every chemo fro 2.5 years after her mets so this family is very special to me.
Iona (Wildplaces~~is Iona correct?) after your posts to me I did go back and look at all my doctors' notes since recurrence and no question about y tumour being entangled with the neurovascular bundle thus no surgical option. My original tumour and 7/14 positive nodes (one was so large it was considered another decent sized tumour) and all that went with the constellation of cancers as my breast surgeon back then called it, were all near the axilla area. I will have a look again at the recent paperwork (Pat, it is great that we get it all isn't it? My BC friends in Alberta so no automatically have the right to their own documents and have to pay at their caner agency!) Anyway, no surgical option.
I did get to see a highly recommended RMT for my lymphedema this week and it was a good visit with more to come. Not great news but reality. I do have severe lymphedema which I did know despite a bit of denial on my part. It is just hard to keep up. I now have a glove to wear on my upcoming flights and another sleeve as they need to be washed often. I also saw my pain doctor at BCCA yesterday and worked out all my meds that I take and need to have filled before departure Feb. 8. My husband announced this week that he is now reconsidering shipping our catamaran home from NZ instead of sailing. The winds have consistently and unusually been in the wrong direction and the first 2000 miles to Tahiti are the problem ones. I would be happy as he would be home earlier. This also means that he is accepting of the fact that he will be 72 this year and no longer needs to do everything~~also knows he can afford the big bucks.
Iona, I have been to the Rotorura geothermal area and it is amazing. I have never spent much time in the South Island and the way you and your son travelled was a good one in order to see lots from a comfortable vantage point.
Bright55, lovely photo and interesting travels for you too.
Time to move on. I have invited the sister of a Vancouver hiking buddy and her partner for happy hour late afternoon. Last night I went to a travelling (BC and Alberta) play on reconciliation (first nations) with a stage forum after the short play. It was a sell out and tonight the same and was very moving.
Love and blessings to you all. This thread is a real blessing for me and I thank you all.
Love Marian
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Hi Marian,
Faslodex works by destroying the estrogen receptor on the cancer cell. It's similar to Tamoxifen which binds to the receptor as both stop the cancer from taking up estrogen. Aromatase Inhibitors, on the other hand, work to reduce estrogen production in the body. I am not entirely clear why one hormone treatment works after another has failed but have wondered about how much estrogen my body is actually producing. I was put into menopause almost 17 years ago from the original chemotherapy and am quite thin (particularly now) so don't imagine that my fat cells are producing much.
It will be interesting to see how this goes. I am a bit stiff today in the backside!
Pat
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Ok,
It was the Dunedin railway station - over 750,000 mosaic pieces of Royal Doulton - go figure.
Pat - liver, adrenals and fat produce oestrogen.
There are both membrane and nuclear estrogen receptors - they have multiple sub units and yes different genes for transcription - meaning lots of space for freaking mutations and thus resistance. I am trying to dig up a good description how the receptor can become permanently switched on due to mutations.
I am quietly hopeful Faslodex will be good to you. It's about time you got a break.
Simple but graphic description of the main difference in action of antihomonals.
Marian - thank you - yep, 😊 we have had a few trips to NZ - and some walking - this was easy and simple with a child...lots of wind on the way back and a fair bit of boat rocking even for a cruise shi
Claire - let us know how you are when you can.
Hugs to all,
Ioana 😊🌷🐣
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Good to hear from you Ioana. So...fat, not so much, liver no chance (... wine likely limits function LOL). That leaves adrenals. Can't get the youtube video to play on my laptop so will try from my desk top tomorrow. Spent part of today looking at scans. Biggest lesson... I have no idea what I am looking at. The pleural effusion is obvious as is the consolidation but beyond that??? Need to find a radiologist.
Interested to get your thoughts on my naturopath. Just so you know... I edited out some of the bits... it was probably not the best experience for someone sitting on the fence with that approach.
Hugs. Pat
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Hi all,
- Had a wonderful time in a chilly Wales celebrating my brother’s wedding.
0 - Had a wonderful time in a chilly Wales celebrating my brother’s wedding.
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And another- The new Mr and Mrs McGrath. Honeymoon in Canada!
L x
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Going from chilly Wales to chilly Canada. They like it cold!!! Nice pics Liz. Glad you had a good time.
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