Dec 21, 2019 01:17PM marianelizabeth wrote:
Still very quiet and I hope that you, my friends are doing OK and spending time with family and friends in the coming days. Merry Christmas.
Meet others who are just facing the diagnosis of a recurrence of breast cancer or metastatic (advanced) disease. You are NOT alone.
Posted on: Mar 9, 2017 02:32AM
I am due to have a CT scan biopsy of a 29mm shadow in chest tomorrow. Having been told 50/50 chance, they have said this morning that it is highly likely to be Mets and not operable.
I have 3 teenagers and a fully supportive family. Positives: small mass and no evidence yet of other mets although I haven't had a full bone scan yet just the neck to pelvis area CT.
consultant talked about new treatment options from 6 years ago when I was dx with IDC with node involvement and 2cm breast lump. She said not curable and their aim was to get me back to living my life and said years. Is this just what they tell you.
I am hours on only from this news. Crying a lot. Can anyone add any positives.
Liz ( jack boo)
Posts 1411 - 1440 (1,480 total)
Dec 21, 2019 01:17PM marianelizabeth wrote:
Still very quiet and I hope that you, my friends are doing OK and spending time with family and friends in the coming days. Merry Christmas.
Dec 21, 2019 11:06PM dutchiris wrote:
Marian, it's good to hear from you. I'm doing well. Mery Christmas to you!
Dec 22, 2019 12:24PM Sadiesservant wrote:
Merry Christmas All,
Sorry I have mostly been MIA. So much going on for me lately with work, home and treatments.
Wishing you all peace and joy at this wonderful time of year. I hope you are all surrounded by loved ones, that Santa is good to you and 2020 is a fabulous year.
Dec 23, 2019 08:43AM Wildplaces wrote:
You are right - we have all been rather quiet. How are you??
We are doing ok. I am working a little too hard and need to pull back a bit. Hoping to hit NZ for a break in January. I am visibly getting older on Arimidex, lots of joints creaking - my feet spreading - dont fit in half of my shoes anymore - but not complaining, grateful for my time.
I am trying to teach myself to read music. My fav moments in December - my son's Christmas concert and the few days spent swimming at our fav beach creek watching white belly sea eagles dive for fish. To me breathtaking.
Wishing everyone A Happy Christmas!!
Hugs to all,
Dec 24, 2019 07:36PM jackboo09 wrote:
Merry Christmas to everyone on this thread. I send you all love and thanks for being there for me. Wishing you happy times with loved ones.
Dec 30, 2019 04:53AM Jojobird wrote:
i know I've been very quiet these past months. Haven't had time to catch up, much less write. I hope you're all having a good, peaceful holiday season.
I was on Tecentriq (immunotherapy) for about 5 cycles, which shrunk one large tumor, but cancer is wily. While that one tumor shrunk, other tumors developed and now I have mets to both lungs. My new regimen is more chemo, which will be Gemzar/Carboplatin combined with Tecentriq. I've had two cycles of that now, and it has made me the sickest I've ever been. Low blood counts, nausea, vomiting, and crashing exhaustion.
I also asked for a one-month reprieve from chemo so our family could travel. We're leaving for Hawaii in January for one week, my daughter, husband and I. We're totally splurging as it's probably a bucket list trip - I"ll need a wheelchair at the airport and I plan to read and rest while my hub and daughter have daily adventures. It's ok by me, and I'll get a lot of pleasure out of watching her swim and enjoy the sea.
Some days are better than others. Already after two weeks of no chemo, I feel better. I can walk a bit, and can write.
I hope to be back here a bit more in the days ahead to read and respond to others, to catch up. Wishing you healthy and loving days ahead.
Jan 2, 2020 04:52PM Sadiesservant wrote:
Happy new year all! The thread has been quiet lately, more so with the holidays.
Jojo, I’m sorry to hear that the treatment has been so hard on you. I wish it was easier. I know from personal experience that the nausea was the worst for me. Pain I can deal with but constantly feeling sick is so debilitating. Can they lower the dose? I’m not familiar with those drugs but sometimes a dose reduction can do wonders. Not sure when you leave on your trip but hope you have a marvellous time. Which island? Hopefully the sun will shine for you and you will have a chance to recuperate a bit.
This has been a time of reflection for me. It’s three years since my stage IV diagnosis. There have been ups and downs of course (I was pretty rattled by the early progression) but overall I’m amazed and grateful at how well I have done. Faslodex has held me steady for two years! I cling the hope that it will keep working as I know that each treatment will likely buy less time. But for now, doing okay and pretty happy about that.
On a personal level I feel that change is coming this year. While my mother is sharp, her health is starting to decline in subtle ways. She’s had a couple of falls, her mobility is less and, more recently she’s experienced symptoms that appear to be heart related. All signs that she will likely need more support in the coming months. Nothing to do but wait and see.
But to end on a more positive note, I want to wish you all the best for 2020. May the year bring you joy.
Jan 6, 2020 05:43AM - edited Jan 6, 2020 05:44AM by jackboo09
A happy new year to everyone. Like Pat I have been reflecting on my treatment journey and thinking about how I have evolved since the dark days of my stage 4 dx in March 2017 to the present; the start of a new decade and my 3 year post dx looming in early March.
In May, I took the decision to retire and 7 months on I am at peace with that decision. I have plans for new projects and hobbies this year. More house improvements and I'm planning further travel. On August 1st I will be 50. Every month, every year is of course a blessing that we are all so aware of and I have much to be thankful for.
Jojobird, I'm looking forward to hearing more about your holiday. I'd love to see some photos. I will PM you.
Pat- you and Ioana were the first people to reach out to me on the board. I raise a virtual glass to our enduring friendship, indeed to all on this amazing thread.
Jan 7, 2020 10:19AM 7of9 wrote:
happy new year all. I have followed this thread as I dealt with recurrence 4 yrs ago. Thank goodness for Frontier airlines...headed to Naples Florida this weekend to get out of Ohio. Great to see others traveling and enjoying their families. Best wishes for stability and mobility in 2020!
Jan 14, 2020 11:30AM marianelizabeth wrote:
Welcome 7of9. Does that refer to nodes? I could say 7of14 if so. How has the recurrence gone? Well I hope.
Happy 2020 Everyone. I feel like it will be a better year for me. The last 6 months of 2019 were the worst of my 7 plus years of breast cancer and I am thankfully feeling better. Ending chemo in late November is no doubt helping and as my bloodwork slowly improves I too feel better. I have not made the decision lightly to end chemo but I just can't imagine feeling so sick again. I also chose not to start Tamoxifen after chemo ended though I may address that later if I feel it is warranted. I am having a CT scan and MRI in February just to see if there is progression. I know that sounds odd as I will not do chemo anyway but I need to know where I stand as I move forward. After that I doubt I will consider 3 monthly scans as were the norm in the past 2.5 years.
We were able to go north to spend Christmas week with our younger son and family and though I did not do a whole lot I did manage the travel. After yearning for warmth and snorkelling over the past months, we finally settled on a winter holiday to Roatan, an island that is part of Honduras with the second largest barrier reef next to Australia's and still much alive. I have got us spending a few days in Montreal to limit travel time both ways and got to use all my son's Aeroplan points to fly business class for the long Canadian flights. Thus I think it will be manageable. My pain pump is working well too.
I am hoping that there will be some joy in all our lives as we move into this decade.
Jan 14, 2020 12:55PM 7of9 wrote:
hi Mariane...7 of 9 was a half human half robotic character in star trek. She was beautiful, smart, non emotional, just matter of fact. Kinda who I aspire to be like after this diagnose is too much to handle emotionally. Especially with a child. I wish you well in 2020 and a cure for us all...
Jan 18, 2020 09:04AM Elderberry wrote:
Marian: I am so glad to read that you are finally getting over the ravages of Taxol. My MO says it can takes six months or more to get rid of some of the SE's - like fatigue and such. I stopped Taxol at the end of August. The time could not have come soon enough. Will be on H&P forever --- may that be a long time. I am doing well on it. PET scan in Feb. Scanxiety looming. My hair now looks like a very short haircut as opposed to an angry social statement. How is your hair coming along post Taxol? I am also glad to read that you are travelling and managing pain. Up and Onwards.
Wishing everyone a good 2020
Jan 28, 2020 12:34PM Wildplaces wrote:
Hello to one and all,
Wising everyone a happy and hopefully healthy 2020. That glass is right back at you Liz 🙂🥂🍾
We are back from a break in New Zealand - it has been good - long walks andgreat food with a dash of wild nature.
The Gold Coast is hot and humid ( horrid at present !) but we were sparred from the fires that devastated so much of the Southern Eastern Coast.
Marian I read that you stop chemo with a heavy heart but support your decision. When you can keep letting us know how you are.
I think about you all often!
Hugs to all,
Feb 6, 2020 08:53PM jackboo09 wrote:
I hope January was good to you. Today is my daughter’s 17th birthday and I have treated her to a spa day with her best friend. It is a very cold day and there is frost on the ground. I remember not taking her outside until March when she was born.
My news is that I am starting statins as my cholesterol is very high. Something of a mixed blessing as I suppose I should be thankful that it has been picked up. Just the SEs to deal with.
How are you all doing?
Feb 8, 2020 07:27AM Sadiesservant wrote:
Great to hear from you. What a nice present! A spa day sounds lovely.
Sorry to hear about the cholesterol. I firmly believe that we should get a free pass on all the more mundane, often age related issues. We deal with enough stuff without throwing that into the mix!
I'm doing okay but must admit that the Verzenio is beating me up a bit. Feeling pretty dragged out these days and still dealing with numerous side effects. For whatever reason the gut issues have reared up again which is surprising given that typically that subsides after a month or so. Recently I've been getting weird headaches which seem more sinus related in terms of the location and intensity. While I don't have any stuffiness I can't rule out my sinuses - I have issues with blood in my sinuses since I started the drug and, more recently, have had some nosebleeds. However, I also suspect the headaches could be related to low hemoglobin. I'll know better next week when I have my next blood draw but my red blood cells and hemoglobin have dropped consistently since I started Verzenio.
Sorry, feel like this is turning into a whiny email. I’m sure I’ll bounce back with a bet of a break. I’ve booked a week off the week of February 17th so just one week to go and then I can rest up a bit. Can’t wait!
Sending hugs to everyone.
Feb 9, 2020 12:01PM marianelizabeth wrote:
Pat that was not whiny at all! I have heard the S/E OF Verzenio can be quite rough. How is your mom?
Liz, I agree that we do not need any issues at all but better than the cancer ones!
Wildplaces, our son and Australian partner left 2 weeks to return to Oz. They are in Brisbane with her family and plan to get to Melbourne where they want to live. They were with us the last 5 months and I am thankful for that but time for them to start their new life. He is Kiwi which I probably mentioned at some point so easy to be in z.
Now for my news. I had my CT on Tuesday and my MO called next day and no progression. I am not sure but it may have been a year since last progression. So we go on holiday with a different perspective.
So good to see you here my friends,
Feb 9, 2020 01:19PM Sadiesservant wrote:
Fabulous news Marion! Stable is fantastic, particularly for a year. I hope your vacation is wonderful.
Feb 26, 2020 09:31AM Sadiesservant wrote:
All quiet here again gang! Hope all is well with everyone. I'm still muddling along on Verzenio/Faslodex. My MO just reduced my dose to see if we can get a handle on increasing creatinine levels. The levels have continued to jump since I started in October. While elevated creatinine has been reported, it typically jumps in the first cycle and then levels off. Not at scary levels yet but I want to keep a close eye on this as renal function is a determinant for so many treatments down the road.
Not sure if folks are into this sort of thing but my boss managed to get me access to pre-sale tickets to see Michelle Obama at the end of March. Victoria is the only stop in Canada for her latest tour so I anticipate tickets will sell out very quickly. I am not sure what to expect but do admire her. It should be a good evening.
Hugs to all. Check in when you can.
Mar 4, 2020 09:23AM jackboo09 wrote:
Just checking in with a recent photo taken in Edinburgh during a stormy weekend. Even the Scots were cold! UK in the grip of fear over Coronavirus. I go to York on Thur for treatment. Being vigilant and hoping it can be contained.,
Mar 4, 2020 01:21PM Pots wrote:
I’m muddling along on the Alpelisib/Faslodex combo. Started cycle 7. My CA15-3 continue to go down and CT scan prelim report indicates not much change except for a 30% decrease in abdominal fluid. So good news. The SE have settled down and while I still get some off weeks and days, it’s all pretty manageable just not always comfortable. It seems like the drugs are affecting my electrolytes so we’re monitoring the sodium, potassium and creatine. I’m hoping we get some warmer weather and that I can get out into the garden....grubbing in the dirt feeds my soul.
A bit of buzz here too about the COVID but it seems like it is being carefully monitored. Certainly not far south of us in the Seattle area there was an outbreak and at least 6 people died. I think it is important to be prepared, be informed and not panic. I’m doing more rigorous hand sanitizing when I go to the cancer Center and when I’m out in public.
Mar 27, 2020 01:44PM marianelizabeth wrote:
This is a copy/paste from the British Columbia thread but applies to all of us.
I have always been a communicator and I hope that now more than ever that we can share with each other. Some of you are on active treatment, some having to travel distances for treatment, some waiting for appointments or phone calls from doctors. Please share especially if you want to connect here or by email or even telephone. We can also share ideas on how we are getting things done. Love to you all, Marian
Mar 28, 2020 06:12PM Bright55 wrote:
Hi Marianelizabeth autumn is coming to NewSouth Wales the nights are cooler and rain is frequent but beach walks and surfing still on agenda. I try to go early to avoid others.pic was taken on hot day that they had problem with Bondi .some busy beaches have had to be closed. Less people now on my walk today
Lots of family n friends and face book interest groups are discussing how to keep busy at home so more frequent contact from across the globe is happening
Scans due soon so hope my mono therapy exemestane is still working
Hope you are in good health and things dont interfer with treatment
All the best bright in hope
Apr 3, 2020 06:38PM jackboo09 wrote:
Wanted to reach out to everybody on this thread at this dreadful time. It is day 11 of lockdown here in the UK. I count myself lucky. I am with my immediate family: Lucy (17), Jack (18) and Cameron (19) and my husband Richard.
The advice for me from the government is to be ‘shielded’ and so I am walking and working out in my garden, mostly by tidying it up and getting it ready for the Summer.
Haven’t heard a thing from York hospital regarding either my scan result or whether my treatment will continue. I am already one week overdue. It feels so unfair to be denied the chance to continue my fight but at the same time the risk of attending is huge.
We hear that PPE for frontline staff is still not available consistently across our NHS. Testing appears to be in crisis and we are sending some tests to Germany for quicker results.
Last night the whole country clapped at 8pm to applaud our key workers: nurses, doctors, teachers, shop workers, care home staff, recycling workers.... al to say a massive thank you for the National effort against this insidious virus that is doing so much damage.,
This thread may be quieter than usual, so I just wanted to reach out to you all and say stay safe. We have already been through so much and we have this. We are all already incredibly strong.
Apr 4, 2020 07:18AM Sadiesservant wrote:
It has been quiet on many of the threads of late which seems odd given that many of us are house bound. Perhaps many of us are trying to grasp the enormity of the situation.
Here in Canada, in particular my province, social distancing policies have been in full swing for two weeks. I had made the decision to work from home when things began to initially ramp up here given my situation. Cancer, in and of itself is immunosupressive but the Verzenio also has an impact on my immunity (although not as much as Ibrance). On top of that, with chronic fluid in my right lung, a virus that attacks the respiratory system is something I want to avoid!
It's an odd situation for me. While many households suddenly have a lot of free time on their hands (beyond essential services, there are many businesses and organizations with their workforce temporarily idle, schools are closed and, apparently puzzles are in high demand!), I am flat out with work. My job involves supporting small and medium sized businesses so you can imagine the demand given the huge impact this is having on the economy. It's hard to keep up with the requests. And while we do our best to provide support there are often limited tools in our toolbox to deal with the fallout from businesses having to close. Government supports are rolling out on a regular basis which should provide much needed help but it's never as quick as one would like. And on the upside, the measures seem to be having their desired effects as our case numbers, while rising, are doing so at a less alarming rate.
All to say that, despite this time of isolation, I am not finding I have the time to do some of the things I would like. Reading books, binge watching Netflix, etc are all having to take a back burner. Thankfully Sadie gets me out for walks on a regular basis so I am getting a bit of exercise.
Fortunately I don't see my MO until the end of May with my next scan in early May. He took me off of the Pamidronate (bisphosphonate) as I've been having issues with increasing Creatinine levels That means I can avoid the monthly trip to the hospital. That just leaves monthly bloodwork and my Faslodex shots which thankfully limits my time in riskier environments. And my GP's office, where I have my Faslodex injections, is taking extra precautions. I was the only patient, first of the day, the last time I had shots which was great.
I hope all of you are keeping well and staying safe. I know none of us imagined we would be facing this on top of everything else but we're a strong bunch!
Apr 4, 2020 08:49AM moth wrote:
Hi jackboo - I've been hearing from my twitter friends that the NHS has been all over the map with getting cancer patients and treatments sorted. Some oncologists are talking about putting people on oral chemos rather than having them to come in - even if it's not the ideal treatment - just to avoid having pts come in. I think that is unacceptable & fwiw, I'd urge you to connect with some UK cancer advocacy groups as they're beginning to make some noise.
I'm in BC. I've been essentially self isolating for ages. My dh started working from home over 3 weeks ago, mid-March colleges & unis here went all online.
I just want to tell you a bit about how in a well run system cancer care doesn't have to end or be postponed.
My cancer center is technically attached to a hospital but they've locked the connecting doors. The hospital itself is actually sort of closed too though they still have patients of course and are admitting. But doors locked & there's a security guard, you have to have an appointment or be on list to visit. My husband drives me to chemo and he sets up his office in the car but now there's no place for him to go pee because they won't let him in! My last treatment was >4 h (plus commute times lol). All restaurants are take out only so you can't get in to use their washroom either. That has been a bit of a funny part :)
All people there who can work from home (counselling, dietitians) are working remotely for I think the 3rd week now so the office spaces are definitely emptier. By March 13, the center stopped permitting family members/volunteers to accompany patients except in exceptional circumstances. We have to attend our appointments alone and chemo alone. Most chemo patients have their prechemo visit with the MO by teleconference. (I can't because I'm in a clinical trial so I have to go in but apparently the trial supervisors are considering some changes). They're doing covid screening questions at the door, with a 2m barrier you stand behind, and all patients are warned that if they have ANY suspicious symptoms they must phone ahead. All staff are wearing masks 100% of the time. Patients are increasingly coming wearing masks as well - surgical, homemade sewn ones, neck buffs pulled up, bandanas. So far it seems as safe as we can make it.
I think cancer care can be administered safely with lots of planning & good thinkers on infection control.
I've been suggesting that the gaps are in the blood labs and scanning places and that those places should consider that cancer patients should be assigned appointments and not have to wait in waiting rooms & extra cleaning precautions are taken. Chemo centers should also consider moving to different locations if they are just wards on a hospital that cannot be safely separated from other patients.
I'm glad you're getting to work in your garden. Our plum tree is almost finished blooming, the Japanese cherry is just starting. The magnolias are coming on strong. I want to get some seeds in the ground but this is one of the first days I've had any energy & I have many other things to do.
Our "make noise for healthcare" is at 7pm. I'm in the suburbs and haven't heard much here but my mom lives in downtown Vancouver & she says the noise there is wonderful. We have a famous 9 o'clock gun at Stanley Park that normally goes off at 9 but has been moved to 7. I have heard from some staff in the hospitals that when they hear the noise it makes them cry - they're pretty stressed and all the cheers get to them - but in a good way, kwim?
Hang in there. Hoping the best for your treatment timing! Keep checking in!
Apr 4, 2020 10:04AM marianelizabeth wrote:
Good to hear from a few of you. Moth that was a good description of how BCCA Vancouver is managing. The last time I was at BCCA Victoria was exactly 3 weeks ago and it was still pretty casual. A few questions after you came in the door and a green sticker to continue on. No doubt that has changed. But I did have an MRI on Tuesday. It is considered essential but I am thinking it was done because it took 3 months to schedule because the systems could not get their heads around the fact that I cannot turn off an embedded pump. It actually turns itself off a few minutes into the MRI and comes back on after. Not only could I tell from pain ramping up but when I went to the pain clinic to get the pump filled afterwards, we could see exact times on the iPad that hooks up externally. Cool eh?
No results yet but for once I am not worrying. no doubt it is busy at BCCA too and i will wait until next week. Meanwhile the pain is manageable though I do find I use my own little device which I am able to use 4 times in 24.
Apr 9, 2020 04:32AM Elderberry wrote:
moth and marian: moth the news for the treatment sounds positive! May it be the game changer that Herceptin turned out to be. Marian, I am so glad for you that the pump has been such a help. My MO e-mails if I have questions. Since I am feeling fairly good I don't have to go in and see him and just go in for my every three weeks infusion. BCCA is in a good place for keeping things chugging along. Lions Gate's chemo centre can be isolated from the rest of the hospital. I have to go in through "the back door" as it were, with someone at the door making sure I was actually there for treatment. I am due again next Wednesday and I wonder if the nurses would feel better if I wore a cloth covering (except for when they take my temperature) . I have maybe 10 of those surgical masks left. I feel like I should hand them over to the staff. I made four cloth covering. I panic when I think they might have to delay my regular treatments.
Retired and an introvert I am managing the self-isolation fairly well. As is my DH, also an introvert. My various reasons to procrastinate on things has gone by the wayside. I am finding it easier to sit down and work on my dolls. It takes my mind off things. I worry about everybody, everywhere, all over the world. I worry especially about my vulnerable breast cancer sisters. We just got another layer of anxiety to cope with.
I live in Burnaby, in The Heights. On my street, it is mostly single family dwellings. I would like to go out and clap at 7:00 but they already think I am daft because I talk to the squirrels and my crow family.
Weather is getting good so I can go out and at least get beds started. Too bad I can't plant and grow my own toilet paper. I could start giving it away like you end up having to do with too many zucchinis.
Apr 16, 2020 01:58AM Jojobird wrote:
good morning everyone I haven’t had a chance to catch up or read everyone’s posts but I hope everyone is doing well
I’m using voice messaging now because my right arm has become completely paralyzed do to brach plexus issues combined with radiation side effects and the tumor placement so I can no longer type or write with my right hand that’s really the big news at this point is the loss of my right arm and right hand and now it’s become a matter of pain management I’m sorry about the grammar errors I’ll try to catch up in the next few days and read more posts love to you all
Apr 18, 2020 09:46AM moth wrote:
Jojobird, I'm sorry to hear that! I hope your pain at least is well managed. hugs
May 6, 2020 08:33AM jackboo09 wrote:
It has been many weeks since I have been on this thread. It is hard to quantify as time is strange just now here in the UK and all over the world.
I am spending time in my garden, cleaning up after our 3 and reading. I also visit ( from a distance) my fabulous father who turned 90 at the end of April.
I exercise every day and have found that I’m enjoying cycling as there is less pressure on my knees now.
Treatment has moved from the York hospital to a private hospital close by. I now have the Herceptin subcutaneous injection. It is so very strange to see my familiar nurses behind full PPE but I am safe and so grateful for my amazing care.
Sending my love to you all. Take care