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 8, 2017 10:32AM
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 1231 - 1256 (1,256 total)
Oct 7, 2018 09:30AM Wildplaces wrote:
JoJo - hoping that surgery went well for you - let us know when you can.
Oct 7, 2018 03:59PM DiV wrote:
Jojo-you are in my thoughts and prayers.
Insurance finally approved mri. Had mri on 27th. Mri shows inflammation in my lower back spinal cord. Have a small new mass at T-1. Will get another mri in a few months. I don't know how much more my nerves can take. All the stress the last few months is starting to take it's toll on me.
Hugs to all Diane
Oct 7, 2018 05:05PM - edited Oct 7, 2018 07:28PM by JoE777
why the wait a few months? Is it because they would treat the disease differently than you're treated now
Oct 7, 2018 11:45PM - edited Oct 8, 2018 01:54AM by Wildplaces
Hold steady - this is a bump - it's a rough one and I am probably not the one to best tell you about it given I am early stage but it's a bump. You have had a very tough couple of years and you have put in a superhuman effort - cut yourself some slack - it's ok to wabble a little. Di it''s a small lesion, if it shows up on MRI repeat - it's not liver or brain so hold on to that.
What treatment are you on,for now? How is your phantom limb pain? Did you have the MRI because you had back pain or was it part of a work up? Interesting it did not light up on your recent PET or am I wrong?
Oct 8, 2018 12:04AM Sadiesservant wrote:
Di. Ioana is right. It’s a bump and I know you will get through this (although I do get the frayed nerves - I’m in scan mode myself with a bone scan on Tuesday and an enhanced CT on the 17th - it just never gets easier). I’m taking deep breaths for you.
Jojo, I hope the surgery went well. Check in when you can.
Hugs to all. Pat
Oct 8, 2018 01:38PM marianelizabeth wrote:
Hi JoE777! Have not met you yet and I see we were diagnosed in the same year originally, 2012. I think Diane said she was having an MRI in a few months because she just had one on the 27th.
JoJo, let us know when you can, how the surgery went.
Looks as though lots of scans for several us. I had a full bone scan and CT chest/abdomen with contrast recently and nothing untoward. We have put off the MRI until after we return from our Danube River trip plus extra Budapest and Berlin Oct. 26 to Nov. 14. We have AirBnB for 3 days in Budapest and 3 days in Berlin at the end with two of our friends for the whole trip. Excited because for all of it I will be able to stay back and relax when I need to.
I have one of the common side effects of Xeloda~~hand and foot syndrome and my feet are red and one has white areas which peel off. I am soaking and applying Gehwiol cream 3 times a day. My MO says we will decrease my chemo for the trip in hopes of that slowing the foot problem.
Liz I understand that feeling of realizing how wonderful those precious times are.
Thanksgiving here and my daughter came over from Vancouver for 24 hours to have breakfast with us and our son and partner who drove down from Nanaimo for the weekend with us. Mary is moving to Victoria soon to be with her partner so I feel truly blessed. We are going north next week to help our nursing school move into his little starter home in Terrace that we are helping him finance. Happy that we are able to help with an early inheritance for his home. Hope to do the same for our other two over the next few years.
Rainy day but looking out to seeing loads of birds feeding at our two feeders.
Love to you all,
Oct 8, 2018 01:54PM jackboo09 wrote:
I agree with Ioana and Pat over the bump but I do feel your frayed nerves. I hate this side of things. I just feel for you: not sure what else to say.
Marian- enjoy Budapest. I really admire you living your life around the cancer crap.
Jojobird- I am thinking of you. Hope you are on the way to recovery.
To everyone- love and hugs.
Oct 8, 2018 08:09PM Jojobird wrote:
Thank you for all the kind wishes. I'm up and puttering about the house today. Doc took out part of a rib and part of my latissmus dorsi muscle in order to remove the 5 cm tumor, but he said he got it all. I'm struggling with pain and mobility but was able to walk around the block today - a milestone for sure. Heavy duty antibiotics and meds in order to manage pain and lower infection risk, I have two drains that come out next week.
One day at a time. Am binge watching The Office and Orange is the New Black, sleeping/resting a lot, and trying not to look at these huge scars on my body.
Love to all. Will post next week.
Oct 9, 2018 04:54PM Wildplaces wrote:
This is from Lulubee on xeloda - which she took for 3 years.
I love the practical stuff lulubee posts. Xeloda thread p167 midway
Oct 23, 2018 03:24PM Jojobird wrote:
I see things have been quiet on this board for awhile. I hope everyone is doing well and would love to hear updates on how you all are doing.
I'm finally feeling like I'm turning a corner. The last two weeks were very difficult emotionally and just now I feel a bit lighter. Increased arm and hand mobility helps a great deal, as does our local beautiful fall weather.
Wishing you all a good October.
Oct 24, 2018 02:34AM jackboo09 wrote:
I am waking up to your post and so happy to hear that you are turning a corner and beginning to recover. You have been amazing in my opinion to have stayed strong, continuing to write your blog and remain positive.
I am on half term right now and enjoying Autumn here in Yorkshire. We have had some clear skies and temperatures of about 18C so I have been walking and yesterday visited a lovely garden centre with my parents. I bought a fern and a succulent to go in my newly decorated lounge.
Work wise I now teach Mon through Wed. Pat, I know you are always thinking about part time. It took me ages to decide but I am glad that I reduced my hours. One benefit is being able to rest after a HP treatment. The fatigue is horrible, but fortunately only lasts about 24 hours.
Friday, I will be in the chair again. My veins are poor. They have changed the supplier for the cannulas and it took 3 attempts. That is the worst bit for me, but I am lucky to be doing well and grateful that my last scan was clear.
Next week Richard and I are having a 3 day break to North Yorkshire. We plan to go on a steam train which goes from Pickering to Whitby ( a coastal town) There are lots of lovely cafes, cycle routes, scenic walks and quirky shops. Autumn is my favourite season and I love the tree colours, pumpkins and of course Halloween 🎃
Our little break will end in York as I am due to meet with a psychiatrist on Nov 2nd. It is my second attempt and I go with some scepticism. However, I am lucky to have all my health care through our wonderful NHS and so will approach the meeting with an open mind.
To all on the board- love and best wishes.
Here is one plant and a new vase. I chose soft hedgerow green for my living room. Calming..
Oct 24, 2018 10:18AM Jojobird wrote:
So glad to hear you are taking time to enjoy and take care of yourself. Part time work sounds like a great balance - one foot in the work place, and time to rest after infusions. I, too, have messed up veins and I usually have to take blood draws and infusions through my hand. Ouch!
The pictures are lovely. I love the vase and the succulent plant. North Yorkshire sounds beautiful, and those brief trips can be really refreshing. Enjoy the fall colors.
To autumn and love to all on the boards,
Oct 24, 2018 02:34PM Sadiesservant wrote:
Jojo, like Liz, I'm happy to hear that things are improving for you. It's always so difficult to provide support from our distant corners.
Liz, glad to know that the reduced work week is going well. I hope to get there at some point but I don't have the same issues with treatment thankfully. Faslodex is somewhat kinder.
I'm still in a bit of a wait and see mode. I had a CT scan last week but my oncologist is away until Monday so I have not heard back yet. I do have some back issues (leading to chronic headaches) that I don't quite know how to deal with. In the past, I would go to a chiropractor but now that seems like a BAD idea with my bone mets! Not sure if I need additional radiation to the spine or if I really should be looking at other alternative treatments like acupuncture. Life's aches, pains and issues don't stop with an MBC diagnosis!
Love the pictures Liz. The painting is finally complete upstairs (with the exception of one closet which I will tackle this weekend). We have gone with a grey and white palette throughout which I love as it's neutral and versatile but looks so clean and fresh. Now need to decide on area rugs and I can finally have them deliver the new beds. Can't wait as I hope that it will help with some of my back woes.
Hope your good weather lasts and that you enjoy your break. It was unseasonably warm here for about a week but now we have our typical foggy, damp October weather. Trying to get the final cleanup of the garden done so that I can put it to bed for winter. And then... some rest!
Hugs to all. Pat
Oct 25, 2018 09:43PM marianelizabeth wrote:
I saw my oncologist yesterday at the end of my fourth cycle Capecitabine. My biggest problem is hand and foot syndrome. Feet I am dealing with and the handls a different story. Since I only have one good hand the syndrome has my fingers and thumb cracking at the nail beds. It got so bad last week but I only took 2/3 of the dose for the last four days. I was travelling north with my husband on a road trip to help our son close on his first home that we helped him buy. I called my oncologist and unfortunately when they called back they could not leave a message for some reason. She wanted me to stop chemo completely. Anyway yesterday she suggested we go to 1/3 of the dose for this cycle because I am going away. I suggested no chemo for the three week cycle and she really agreed. Yay! We leave tomorrow.. In udapest with two wonderful friends for the start of our 18 day trip. We have three days in an Airbnb then our 12 night tour starts. This afternoon we were notified that there is not enough water in the Danube for all of our week on the wat
Oct 25, 2018 09:47PM marianelizabeth wrote:
BCO is screwed up tonight and I was unabl to finish the post. I will try tomorrow. Love Marian
Oct 28, 2018 08:44PM Sadiesservant wrote:
Okay... all together now... one, two, three... deep sigh of relief. MO called this morning (Sunday I would like to note) and the CT came back stable. Thank goodness. He is recommending that I have radiation to my lumbar spine as he feels it will likely help with the back pain and associated symptoms. I’ll give my RO a call on Monday.
It’s amazing to me how much our lives revolve around scans and MO visits. I had to laugh at work as they were talking about scheduling for vacations for next year. I just can’t think that far ahead now. Life is in three month chunks. I’m okay with it this point but it does create challenges when trying to relate to others. LOL.
Marian, so happy that you are traveling
Hugs to all. Pat.
Oct 29, 2018 10:45AM JoE777 wrote:
radiation to the lower back stopped my pain. The only back pain now is from meds.
Nov 11, 2018 12:34PM Jojobird wrote:
Marian, I'm so sorry you're having to deal with hand/foot syndrome. I took Xeloda for six cycles and during the last cycle my nail beds started to bleed, but overall the treatment didn't work for me. Very happy that you are getting a break, and I so admire your travels. Three cheers to you!
Pat, so glad to hear the CT scan came back stable. I hope you get some relief. And boy, do I hear you on planning for the future in three month chunks. I have to return now every three months for check ups and scans every six months - probably for the next three years.
Liz, looking forward to seeing the vacation pics.
Jo, I hope you get some pain relief soon.
I'm about six weeks out of a complex and long rib/muscle surgery that has caused me to fall into a bit of a depression. I'm slowly climbing out with the help of friends and returning strength, but my attempts to exercise outside are thwarted by these California wildfires. Yesterday I couldn't see past 1/4 mile (about two city blocks). We're all being asked to stay inside. Even our pets. I drove to the store yesterday and all the local children's parks were empty. A ghost town.
Should be better tomorrow. Strength and healing to all.
Nov 11, 2018 05:25PM jackboo09 wrote:
Hi to all
I am late posting pics of my short break. Zipping around a beautiful forest in North Yorkshire; one of the best days of my life because I felt so free and was trying something I haven’t done before- electric mountain biking. So much fun!
Sending love to all. Jojobird, I saw the wildfires on tv tonight. Very frightening: stay safe. I hope you keep trying to crawl through your post op recovery. It is no wonder you still feel very low. Operations challenge mind and body.
I really hope you are able to feel better soon.
How is everyone doing?
Dec 2, 2018 11:31PM marianelizabeth wrote:
Wow, it has been awhile since any posting. While you were cycling Liz, we were taking the train into Berlin. It was a coincidence to be entering Berlin on the Remembrance Day and it felt quite somber.
Our 18 days in Europe was wonderful and having a group of four made it much easier on everyone. We started in Budapest and it was my favourite really despite the sadness of the last one hundred years. The boat trip on the Danube was wonderful I did not have to do everything and could simply relax. I gained 7 pounds eating whatever I liked.
I got right back into Cancerland. I had a miserable MRI at the Victoria General on Friday. I do not blame the hospital or the staff but it was not easy with short staff. I never had a problem in the last two MRIs but this time I actually got anxious no doubt because there were so many hitches. However it is now done and will be sent to the head radiologists in Vancouver to read alongside the other two. Capecitabine has not been my friend and after four cycles and problems with the hand/foot syndrome we are putting it in the back pocket for when I do not need to be so mobile. I start IV paclitaxel on Thursday. It may be worse than the other but it remains to be seen. I kind of look at it as loss of hair or loss of walking. My pain has become excruciating again but I will be having third nerve block on Tuesday.
Please let me know all of you what is going on.
Dec 3, 2018 09:01PM Jojobird wrote:
Liz, the bike ride and countryside look beautiful. Kudos for getting out there!
Marian, I'm sorry to hear about the continued pain but glad you are getting a nerve block soon. And empathy on the MRI - I have to take valium prior to all MRIs because of anxiety. Sounds like they fiddled and messed up the procedure, which would make it even worse. How is the paclitaxel going?
My energy is back, thank goodness, for the holidays, and I've started decorating the house. I'm really trying to cut back on purchases, and have noticed how tempting it is to want to buy pastries, tablecloths, flower displays, just stuff and knicknacks that end up costing a lot of money in the end. We're saving for a big trip so I often ask myself, "Do I want this new thingy now, or do I want a nice hotel room next year in __________?"
One day at a time. Wishing you all good days ahead.
Dec 7, 2018 06:33PM - edited Dec 8, 2018 12:14AM by Wildplaces
a big hello to one and all,
Liz - glorious photo on the bike - it is indeed good to get lost in the woods - colours look sublime - between you and Jojo I still think that book should happen sooner or ...later - something about when shadows bring light or the light from under a shadow etc dont listen to me, math and data are my forte
Marian - I love Budapest - and the Danube, particularly the Delta - so happy for you - in a year or so you hit two of my fav spots - Danube and NZ. Well done. ouch on the pain - hope the nerve blocks kicks in and your next drug is effective.
JoJo fantastic that you bounced back so well after major surgery - keep up the Christmas spirit up - I love the creative details we stumble upon at this time of the year. I make a little budget for it - to be honest dont deny myself too much over the next two weeks. You sound wiser.
Pat you know my journey - almost to the line now. It will be good to get back my routine. Chooks are fine. Garden poor, too hot and humid for anything but chillies to thrive. I keep thinking of you in your new bed examining your rugs - and smirking - you got it done!
I am working to the 21 but have the next 5 days off - can not wait!! I miss snow.
I will post my Christmas tree. Di I remember our trees from last year.
Hugs to all at this beautiful time of the year,
Dec 8, 2018 12:47AM Sadiesservant wrote:
This thread has been very quiet! I hadn’t realized until I looked back. Like you Ioana, I am very much looking forward to a short break. At the moment, I only have the 27th and 28th booked but I’m seriously considering taking a few more days. Work has been extremely tense the last couple of weeks. Lots of drama of one sort or another, all of which requiring considerable effort to smooth over.
Marion, so glad the trip went well. Sorry to hear about the pain and the MRI. I’ve only had one, many years ago, but recall it was not my favourite scan. Apparently I am slightly claustrophobic - hadn’t been aware until then but the brief sense of panic was unmistakable. I was able to get it together fairly quickly thankfully. The technician was none the wiser, I hope.
Liz, hope things have settled for you at work. I know the juggling is hard and hope you are able to get some rest over the coming weeks.
Jojo, also glad to hear that you are back in your stride. As someone who is desperately trying to get rid of excess I can relate to the awareness of how easily we collect stuff. I swear it breeds.
Ioana, always enjoy your posts and look forward to seeing a photo of the tree. No inside decorations for me this year sadly. I can’t say that the house is anywhere near complete but yes, my bedroom is almost done, the bed is comfy (Sadie finds it particularly inviting 🤨), rugs look good. Just need a few finishing touches.
Di, we’re missing you. Hope you are just busy with your house, garden and enjoying life. Write when you can.
Hugs to all. Pat.
Dec 12, 2018 01:41AM - edited Dec 12, 2018 01:42AM by jackboo09
It has been a while since I posted. Life continues to be busy but now have one more day at work before I finish for the Christmas break- super excited!
Last night I attended a carol service in our local church. It was a bitterly cold night and all the staff had to wear academic dress; not exactly thermal gear. We sang hymns and listened as our pupils did readings.
My brother and his wife are staying with us for a few days next week so I will have precious time with baby Eira who is now 7 months old. I managed to find a high chair from a charity shop for her which is just perfect. One day we are all going to York to sample food from the Christmas market and wander down the shambles- no where like it for that Christmas buzz.
Health wise- I saw Dr P last week on Thur ( the day before my next HP treatment) It was an uplifting meeting. He even mentioned that we could stop treatment and watch and wait, however this would be years in the future and there are many things to consider. I will scan again in March and will be 2 years on from a metastatic diagnosis.
The SEs are now more troubling: GI related now. As such I have decided to postpone treatment that is due on the 28th Dec and have it one week later. My veins will be pleased.
Have to dash now as I am about to get ready for work. Please forgive my recent absence. I will have more time to catch up with everyone as soon as I finish work. I think of you all often.
Love Liz x