Shadow in chest is recurrence
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Hi Liz and everyone,
I am ok thank you - we travelled a bit, got muddy and tired but it broke our routine. Back at work - still trying to simplify. I read often, don't post much because sometimes I struggle to find the right words. I think about you all and wish everyone pain free days.
I have broccoli 🙄🐣 and yes the chooks are enjoying the cooler weather. I have learned how make banana bread - yeah it's full of sugar but I am not a sugary person so I am in no danger - I took it to work for morning tea.
Hugs to all,
😊🌷🐣
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Hi Everyone,
Just checking in as I start my day. It's hard to believe but I am STILL dealing whatever attacked me at the end of my vacation. It's been almost five weeks now but unfortunately, after a short respite, I am still coughing. It's so frustrating, particularly at this time of year when I want to enjoy the sunshine. Still working in the garden when I can but it's a slow process!
Love the picture you painted Liz of enjoying the start of the day with a cat on your lap. I miss having a cat but Sadie is far from cooperative on that score. There are one or two brave souls in the neighborhood who just stare her down. Despite this, she's still eager to chase - she has yet to experience the raking of claws across her nose. One day she will understand that she needs to treat them with a bit more respect!
No corn Ioana? I still laugh at the memory of stalks of corn everywhere in your garden including the coop.
Hugs to all as we start another work week.
Pat
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Pat I am hoping that this weather will help in some way to tackle your bug. Are you back at work full speed since your holiday? As for the mets support group, I had been on a list for some months while they worked on a plan to start one up. I believe there had been one previously. I do not think that in anyway do they mean it to be what you suggested but rather as Jo said, it is important for a group to work on goes then share and bond which would not be possible if there was a revolving door. in 4-6 months there will no doubt be discussion about how we move forward.
Ioana, good to hear from you as I visualize chooks and broccoli.
Liz, by now you will be on summer break with a shorter work week in the fall. Perhaps this will allow more relaxed time for your family and those home challenges you mentioned. I am working at breaking my long term habit of offering unsolicited and/ or unwanted advice to my young adult children and in the short time I have been doing this life has got smoother. It has been incredibly busy with return of my husband as so many people who want to spend time with him. More on that later.
Di I am wondering how it is going for you and have you got the results that you're waiting for? I hope it is positive news.
JoJo, that is quite the summer list and would love to hear what parts of it you have accomplished and if your 50 to 60% of normal energy has fluctuated.
For everyone I wish sunny and happy summer days or in the case of Ioana, cooler but pleasant days Down under.
Marian
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Hi to all. Marianne glad to hear your hubby is home and getting pain under control.
Pat sure hope you can shake that cold soon. I caught a cold 2 weeks ago and still fighting with it.
Liz hope you enjoy your upcoming getaway.
I had a ct scan and bone scan on Monday. Should hear something in a few days. About 3 weeks ago I saw a Dr about a clinical trial. He ordered the scans. If scans come back negative for cancer I won't get chemo. If positive I will do the clinical trial. The trial involves 3 drugs including Afinitor. My insurance denied the Afinitor so now my oncologist is working directly with manufacturer to try to get it for me at no cost. Just praying for NED. Been trying to enjoy the summer and get things done outside. Been working on staining privacy fence. Also had my niece and here boyfriend here from New York for a week. Then went to visit my boyfriend's sister for 5 days. It's been really hot here for the past week. Flowers are growing and blooming.
Hope everyone is having a great summer!
Hugs to all Diane
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Hi all
Just checking in with everyone. I am enjoying my Summer holidays. It is wonderful to just relax at home. I am trying to exercise everyday and eat well.
I go to London on Sat and then onto Brighton for some time at the seaside.
Treatment tomorrow in 30 degree heat. The UK is parched and we don’t know how to cope. ☀️☀️☀️
I am thinking of you all and hopefully you are fighting hard and feeling well?
My next meeting with my onco is early August. I am presuming he will order a CT scan. And so it goes on..
Sending love
Liz x
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Liz - great to hear from you!!
Marian - you are always kind - so happy that your pain management plan is strong and that you have your husband by your side. You are very strong!
DiV - not sure what to say - I pray that your doctors are wise and strong - I know you have a good team - keep us posted - you are often in my thoughts.
Jojo - love your writing.
I am working - its winter here so everyone is busy - school drops, swimming and tennis lessons, reading at night, trying to keep up with my threadmill stuff - doing a little aerobics and tendering to my chooks. I now have a uniform - I know how silly that sounds - but it makes getting dressed in the mornings simpler - white casually pants, white tshirt, cashmere light knit sweater and sport slip on shoes. Little ironing, casual enough for me to walk in if I get a break at work and yet the white pants make it dressy enough for most meetings.
I also have started taking my lunch with me - it's the same ( I am widely loyal and boringly repetitive ) - avocado, tomatoes, chickpeas, green onion its the base and then cucumbers, radishes or anything else in the fridge - topped with a lemon dressing/squeeze and walnuts. I also now carry a little snack pack - nuts, raisins, an aspirin, one Zofran ( just in case) green and linden tea bags, a pice of dark chocolate.
Hugs to all having treatment,
🌷🐣😊
I miss Claire - I know she is having problems with her liver. I miss Claire
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Hi All,
Nice to see some posts on the thread. It's been quiet on the Forum lately.
Marian, glad the hubby is home and that the pain management plan is working. I know both situations must be a tremendous relief. Liz, great to hear from you and so glad you are taking time to relax. Di, I am thinking of you, hoping for the results you want for the scan and that your medical team gets you on the right track. And Ioana, you are definitely wise... I like the uniform notion although I have to laugh at the idea of white. It would never do for me! I would have something on my backend within five minutes of putting on my clothes. Dirt finds me...
I'm in the wait and see mode at the moment - right hip has been giving me hell and so, today I had another CT - this time focused on the hip. Not sure how that will work in terms of comparing one CT against another but I will be glad if I can figure out why I am having so much trouble with it. Should hear back some time next week. And I finally managed to get over the pneumonia that plagued me for so long. I think it was five weeks of coughing.
Next week I am taking time off. I have a lot to do around the house/garden but am really looking forward to putting my feet up when I can. I just need to keep myself from doing chores all day. I have a bad habit of sticking into a task and then realizing it's now 4:00. But, even doing chores it is lovely weather to spend time digging/pruning in my garden.
I really miss Claire as well. I miss our virtual dinner parties with her off the boards but hopefully she is only giving herself time to recover and we will hear from her soon.
Hugs to all.
Pat
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Hi Again,
I wanted you all to know that I heard from Claire this evening. Unfortunately she has been very ill with a significant amount of fluid in her belly. (She had 7 litres drained off.) As you can imagine she is very fatigued. She is starting round #4 of Xeloda. I so hope this will do the trick....
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Hi Pat
Thank you for the update on Claire. She is in our thoughts and I pray that the tx will help her.
Sorry to hear about your hip pain.
I am on a train to London. Will post more after my few days here.
Love Liz
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Sadiesservant,
I had a cat like that ! He was a ginger male tabby, a rescue, and oh was he ever fierce. I used to let him roam around my apartment complex and I saw big dogs race up to him and he would simply sit down and stare them down. Not a one dared attack him.
I hope they get to the bottom of your hip pain, and you get some relief soon. Glad to hear your pneumonia has abated and that next week you will get a break and enjoy some time off.
Please give Sadie a friendly bop on the head (from my cats
Amica
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Hi Pat so happy to hear your pneumonia is gone. Hope they find out more about your hip issue with the ct scan. Take it easy on your week off relax and enjoy the outdoors. Thank you so much for the update on Claire. She is in my thoughts and prayers.
Liz enjoy your holiday!
Loana good to hear from you. Always thinking about you.
I got the results from my tests. Bone scan is clear yahoo! Ct scan shows lung tumor stable with some shrinkage. Now the bad news. I have a new nodule on opposite lung very small. Dr said it could be benign but put in order for a pet scan. Praying it's nothing...Dr said if scan shows it's cancer I will do the clinical trial. Just praying its nothing. I've been keeping myself busy outside staining my fence my boyfriend put up last year. Been also tending to my flowers.
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Thought I would introduce myself....I've been lurking for a while getting to know you. I joined your “shadow club" earlier this year when it was confirmed that I had a progression to the left lung. I'm 63, stopped working at Christmas with the news of a progression. I was first diagnosed with MBC in 2017 after initial BC 2013. I've just finished Taxol #14 and hope to continue for 1 or 2 more cycles depending on the neuropathy....the lung nodules are being stubborn. To those with scans coming up, I feel your pain. I'm due for another set at the end of August and working hard to push the scanxiety to the side, away....not now.
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Hi Pots,
Welcome to this community! I'm also kind of a newbie, diagnosed with recurrence in March of this year. I'm sorry you had another recurrence and am sending you empathy and strength in dealing with the scanxiety. Can totally relate!
I've been off these boards awhile, on vacation and puttering around the house and hanging with my teen daughter, but it's so good to hear from everyone. Di, I'm sorry about the new recurrence but will keep my fingers crossed that it's not malignant, and even if so, that you can get into the trial. Your deck looks lovely.
Pat, I am so happy to hear that the pneumonia is abating. What a relief to have that drag of energy ease up. Hoping for good news regarding your hip, and that you definitely get some rest next week.
Liz, I am hoping your time at the seaside is refreshing, and am with you on enjoying the summertime downtime.
I hope I'm not missing anyone else, and though I don't know Claire so well am sending her healing and strength.
We were at Bodega Bay, a seaside city north of San Francisco for several days and enjoyed waking to the ocean, eating good food at a nearby restaurant, and just walking on the beach. It was so lovely. Came home. I'm back on round 5 (out of 6) of Taxotere and Xeloda, just had my infusion on Friday and am dealing with the steroid insomnia and crash. It will come today. Not a day to be super-productive, but I will go to the grocery store. My kid starts camp this week and this will give me more time to write, think, read, and chill.
I'm also struggling with not being into my job so much anymore. I love my coworkers, who've been the best support team ever, but the work itself just doesn't engage me like it used to. The uncertainty of my prognosis also doesn't help. Hard to get motivated to read, update my skill set, and prepare when - who knows? My tumor may have not have shrunk enough. Perhaps the chemo isn't working as well as they thought. Then what? Anyone else have this going on? I'm on disability until November and just don't know what will happen.
I'm also withdrawing from Facebook and social media. My family of origin is very dysfunctional, and it's hard for me to see everyone's family summer reunion pictures, happy camping adventures, and curated, picture-perfect lives on my feed. I love my husband, daughter, and friends - many of whom are a kind of family - but I still grieve for the abuse of my childhood.
Life is not a straight line, is it? One step at a time. Love out to all.
Jojo
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Welcome Potts. Scans are horrible. I’m kind of hoping I won’t have a scan in August. I meet with my onco in a week’s time and so we’ll see what the timeline is.
Jojobird- work is a very difficult thing to deal with on top of MBC. All I would say is that you need to give yourself time to think through what you want to do regarding this aspect of your life. If you read back over this thread you will see that i agonised over work. I have just reduced to 3 days which will be from Sept 2018. Once I made the decision, I felt relief because it is a balance. Whether it is enough of a balance remains to be seen. My only advice to you would be this: NOT working inevitably leaves you more time to dwell on this crappy diagnosis. Perhaps distraction might not be the ideal answer, but for me it helps. So work exhausts me and make sure me feel normal I be equal measure.
Here is a photo of me today on my 48th birthday. August 1st. Today is a good day. X
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Hello Everyone and welcome Pots. You will find this a great thread with lots of support and good friends.
Happy birthday Liz 🎂 🍾🥂 I am so pleased that you had a great day. Wonderful to see your smiling face, looking so relaxed.
Not sure what I said in my recent posts but have been dealing with some pain in my right hip and groin over the last six weeks or so. I’m very fortunate that I have an awesome team supporting me. Sent a note to my MO who ordered a quick scan of my hip. It came back stable but did note that I have extensive mets in my hip, pelvis and pubic bones which is likely causing me grief. He called me to chat about it Friday night, sending an email to my RO. Met with her today and am scheduled for radiation to the hip on Friday. Just that quick. I worried that I was calling in the groups too soon - I am not in agony but it is having an impact on my day and my sleep - but both physicians seem to feel I should deal with it ASAP.
Other than that, I have been enjoying a week off, mostly puttering around the house. I feel like I made some progress in getting my mom to start letting go of some of the excess junk in the house and managed to get her to make some decisions about pulls/knobs for upstairs and some new beds (going for adjustable to make my life easier down the road 😉). So this is a good week for me as well!
Jojo, work is a conundrum that we all need to grapple with. I think Liz has the right approach but I have not been able to find a way to get to part time. Quitting work all together is likely not the best approach for me despite the fact that, at times, it is very appealing. It’s such a personal decision though that each of us has to decide what works best for us. Just know that work and MBC are not mutually exclusive.
Di, always thinking about you. Your deck looks fabulous. Hoping that lung nodule is nothing as the scans are awesome news.
Hugs to all. Pat
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hi Liz happy birthday looking good ..great news for work reduction
all the best
Bright in hope
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Love the photo Liz! And Di, good work on the deck. Actually I want to say that I am glad to see more of us active again here and welcome to Potts you!
As for me I'm not sure how I feel but I gravitate between fear, anxiety and my usual positive self. I saw my MO yesterday for my monthly visit. Last month she said that she was sending off a message to the Vancouver BCCA regarding my MRI from July 31st last year. She wanted comparison from that MRI to the one done June 20. The head of radiology at the Vancouver BCCA who had followed on my testing last year as well as doing the core biopsy, did that comparison and wrote a report. Bottom line is that progression and much more enhancement extending further and involving neurovascular elements, muscles, pleura with loss of peripheral fat planes whatever that is. There is more but Ibrance has stopped working and today I start Capecitabine (Xeloda). There is no way that I have absorbed this information and I have lots of questions. I did not really this coming even though the pain has worsened and the breakthroughs more frequent.
I know many of you have already faced this kind of a jump and so you will know how I feel. Again I'm so happy that we have this group.
Love Marian
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Hi Marian,
I'm really sorry to hear about the progression. I do know how you feel. Last year, shortly after coming off Ibrance due to anemia, we found I had significant progression on the Anastrazole. Like you, I didn't see it coming, thinking the pain I was experiencing was due to adhesions in my lung. Now, the pendulum seems to have swung the other direction with me imagining the worst at every turn! As I mentioned, I am set for rads to take care of the hip pain and was really surprised that my MO does NOT consider it progression. (I really hate the psychological part of this damn disease.)
I found Capecitabine quite manageable but you do need to look after your hands and feet. I'm sure you have already found the very active thread for "Madame X".
Sending virtual hugs. Hope X gets things back on track quickly. (My MO indicated you should see a clinical response by the second or third cycle.)
Pat
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I searched Madame X but there are many threads. Is there a specific one?
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Try “All about Xeloda”
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Hi Liz,
Happy happy birthday - love the photo!!😊🥂
Hugs to all dealing with scans, progression, treatments changes.
Pat - will email you - Cure-ious nailed it.
DiV - want a great deck - not a walk on a beach without a thought about you!!
😊🌷
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Hi to all,
I have been to my oncologist today as part of my regular check ups ( approximately every 2 months)
Not much to report: latest echo was 60, bloods all normal and I do not have any symptoms. I have a CT scan with contrast booked for the end of Sept and I will find out the results the same day which I have never done before. I think he has done so to reduce a) my anxiety and b) my travelling time. I am grateful for that.
If the result is continued NEAD he will order 2 CT scans each year.
I asked about metformin and other “ off label drugs” that are a hot topic now. I am thinking mainly of the ‘ How to starve cancer’ book. ‘
He said the NHS were not rolling its use, but admitted that he has patients who go to The Royal Marsden in London privately and buy it, presumably seeking the opinion of some kind of nutritionist there. He said the community of oncologists do not advocate it.
I have a good friend who I will chat to about this but remain uncertain. However, sitting back and waiting for the shoe to drop doesn’t thrill me either.
Anyway for now I remain on HP and Letrozole. My knees hurt every day but it isn’t stopping me on my new exercise regime.
Some food for thought.
Love and best wishes guys
Liz x
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Hello everyone,
Marian, I'm so sorry to hear about the disease progression. I'm sending empathy and heartfelt thoughts your way. Like Pat mentioned, Xeloda is doable and somehow I was able to avoid hand/foot syndrome. I'm now on my fifth cycle of it and the biggest side effects are fatigue, some aches/pains, and major nose running (which I can abate with saline spray). Not too bad. Am hoping Xeloda helps, and that you get pain relief and some respite from all this soon. Hugs to you.
Liz, glad to hear that things are calming down and am hoping that the CT scan results are NED. Thank you for the Metformin information, too - I'm going to look that up.
I've been hanging at home, getting my kiddo ready for high school, shopping, getting rid of clutter, and am generally working through the limbo of chemotherapy treatment and waiting for results. I have one more Taxotere/Xeloda cycle and then it's off to a CT scan to see if the tumor has shrunk enough for excision. I sure hope so.
And: I'm off to the mountains Monday for a few days, for a personal retreat. I plan to do some easy hikes and take myself somewhere nice for dinner. Small pleasures. I'll post a picture when I return.
Love to all on this rocky road.
XO
Jojo
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Ladies - I don’t know you as a group but I do know Liz a little. Absolutely delighted you’re doing so well! Wanted to let you know I got metformin through an enlightened endocrinologist. I discussed it with him and he said he’d have a very low threshold for prescribing it. He gave me a glucose challenge test (complicated) and on the basis of mild insulin resistance he prescribed metformin. I’m on a statin too, similar basis. Seek and you will feel nd!!!
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Good morning everyone,
Just wanted to share a few photos of my bucket list trip to Lake Tahoe. There was a small bit of haze but the air quality (due to wildfires in Yosemite and elsewhere) was rated "good" so it was ok to hike. I've always wanted to hike part of the Tahoe Rim Trail, (would do the whole loop if I could.) So I did. I managed 6 miles at 8,700 feet elevation (2,651 meters). The views were incredible.
I huffed and puffed at the high altitude. I worried about lymphedema. My arm did puff up a little, but I kept hydrated and rested as needed. Lymphedema was actually one of my biggest fears on this trip - kind of a trial run. But I have to say, after an hour of hiking, alone in this quiet forest, it felt so good to look out at this gorgeous lake, in the good air, and feel like I'd accomplished this small victory. Ladies, I thought of you. I thought of all of us struggling and made a quiet, water bottle cheers out to the universe.
Then, I went to a really good restaurant for crab cakes and a glass of wine.
OMG. The. Best. Ever.
Cheers to you all and to small victories. Love out.
Jojobird
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Hi Jojobird
Thank you for your post. Wow what an achievement. Stunning views, delicious food and a treasured glass of vine. How this day must have lifted your spirits and by sharing it, lifted mine and I’m sure many others.
I find walking really helps. Just been told I have arthritis in my knee but I refuse to let it put me off. I read your post after a trip to the gym. Exercise improves it and so I will keep going.
Thanks again for your post. You are doing amazingly well Jojobird. Much love
Liz x
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P.S I so want that plate of food right now........
😆😆😆
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My dear friends, I’m sorry that I am coming with sad news but Claire’s sister wrote to me tonight, letting me know that Claire passed last week. She had been having trouble with fluid and aspirated last Wednesday. She was surrounded by her family and ultimately passed peacefully.
I’m crushed by this news. Claire seemed so invincible with that quick wit and determination. We only spoke once on the phone but she was someone who it was easy to make connections with. I will miss her deeply her stories about her travels, her wild kitten Mr. Tiny and her impeccable good taste in wine and food. Rest well Claire.
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Dear Pat
I am grateful to you for letting us know this very sad news. Like you I talked to Claire once, but I feel we all got to know her through the energy and wisdom of her posts. She was a huge source of strength to all. I feel so very sad, but she is no longer in pain. No more words right now.
L
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I did not know Claire but I know she is been mentioned with great fondness of the time I have been on the site. With this is very sad news brings us the knowledge that it could be one of us too we all know. I am so grateful to have all of you in my life.
On another note, I had a stellate ganglion block on Tuesday and though I hesitate to make any claims yet regarding pain, I think that there may be a slight change.
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