Shadow in chest is recurrence
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Hi to all! Claire and Liz hope you have a great meeting! Wish we could all be there.
Marian hope the pain is manageable.
JoJo praying they find pain relief for you as well.
Pat how's that trip? I know you are having a wonderful time!
Saw my oncologist yesterday. I got one test result back. PDL-1 expression is negative so Keytruda will not work for my cancer. Still waiting for the bigger test. Should have those results this week or early next week. Been working in the yard planting and laying mulch. Wore me out but kept my mind off of the phantom pain and cancer. Been hot here too in the 90's. Today spending at my boyfriend's house doing yard work.
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Hi All,
Just a quick note as I need to get ready Togo out.Back in London but it appears I have managed to pick up the shipboard cold. Sore throat today, just before I head home. Oh joy! Off to the theatre tonight armed with a ton of cough candies. Hopefully that will keep it under control.
Not sure what I will do tomorrow. Possibly British Museum but we will see. I’m off at some ungodly time on Saturday morning, back home in the late afternoon.
It’s been great but I am ready for my own bed (and a few less queues - lots of lining up on this trip). Will post photos if I have any good ones when I get home.
Cheers. Pat
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Hi to all
It has been a while since I last posted. No worrying reasons, just busy. I have a HP on Thur that I am nervous about. I had a bad chemo style reaction with body aches.
My job and family life are still chaotic but O finish school for the Summer in July and so will have more time then.
Sending love,
Liz x
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Liz, it has been quiet. Pat, welcome home to your own bed. Lovely day here too. Di, garden work is somehow comforting~~growth perhaps which is part of life. My son and partner got home last Wed. from Hawaii and off the boat and spent hours with me this weekend in the garden. My husband and new crew (two almost age 72 and one age 63) now heading on the final leg of the Pacific from Oahu to Victoria and I have a DOA of June 27 though of course it only approximate.
I saw MO and pain doctor Friday accompanied by Steven and Heidi and was close to getting a hospice bed but it got snapped up by someone more in need so now waiting at top of list. This for pain management and could be for a week or more but much faster than doing it slowly at home.
Di, I feel for you with the phantom pain plus the wait for rest results and then a plan.
Hoping for our other buddies to check in from far and wide.
Hugs,
Marian
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Hi All,
I’m back, sort of. My last couple of days in London I came down with something that appears to have turned into pneumonia. Trip home was pure hell (felt so lousy on the plane and trying to inconspicuously cough up green gunk) and I have been in bed ever since. Haven’t the energy to do anything, including unpacking which has created some issues as our house is still in chaos. Saw my GP yesterday and he put me on antibiotics and ordered a chest X-ray.
Marian, sorry the pain is so difficult to control. Di, hope the test results show some great options for you.
Now, back to bed..... Pat.
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Pat,
So sorry to hear you are unwell and the flight home sounds like an ordeal.
Rest up and hope the antibiotics start to work.
Liz
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Good morning,
Pat, I'm so sorry to hear about the pneumonia and I hope the antibiotics quickly do their job. Please do get rest and I hope you are getting help to deal with day to day logistics. Take good care.
Di and Marian, garden work definitely offers some kind of balm to dis-ease. Would love to see photos if you have them. Marian, I am thinking of you and hoping you are getting some pain relief. How does it work with hospice and pain? I hope I'm reading this correctly and thinking it's a short-term solution so that you can get better pain relief. And I am so in admiration of the nautical life that you and your family live. More power to you, smooth sailing and safe travels. And much pain relief.
Liz, counting the days of school for you. Mine ended earlier this month and I am so grateful to have this downtime.
Speaking of summer, I've been feeling a bit blue these past days. I just had my third infusion of Taxotere last Friday and am currently on Xeloda for the next two weeks, and this round really hit me hard in terms of fatigue and the big picture. I spent most of the weekend in bed, unable to do more than get water and nibble a few bits. My kid spent epic amounts of time on the computer, and it's summer, and everyone's posting their great vacation photos on facebook and traveling and barbecues. Family reunions. Everyone's perfect, non-arguing family and relatives. The beach at Hawaii, camping in the forest, able and full bodies everywhere doing active things in daylight.
I've got cancer again and I can barely get out of bed, and yet another summer (two years ago the same) my kid and husband are having to deal with a sick mother and wife who can't plan more than a day or two ahead. I want to go places, but I never know how I'll feel, and this beautiful sunlight is lovely of course but it can also be a cruel reminder of how, in no small cruel way, cancer robs life.
The days do slowly get better, but I am just feeling sad. Sad and not attractive with the hair loss and carved parts and tired eyes. Sad with the narrowing of options. I may feel better soon and friends buoy me, but it's summer and all around is cloud cover. I can't help it. I can't see the sun.
Wishing you all better weather soon.
Jojo
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Jojo - your poem, "I remember" is beautiful. You are so talented. What an amazing imagination. Your family is happy and grateful that you are with them. The kids are in heaven playing on their computer knowing you are in the house. Just think of yourself and take one day at a time. Waiting anxiously for your next poem. mimi
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You are so kind, nonomimi. Thank you. XO
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Almost a week ago I got a bed in theI Victoria hospice which has 7 beds for acute palliative patients like me and 10 beds for those nearing death.I am so lucky and have such a great team. I have been in hospice here NOT for end of life but for neuropathic pain management. My cancer agency team plus the gang here are totally working together. I had a chest/abdomen CT with contrast and a full body bone scan Thursday because they could fit me with cancellations etc. since I am right here. My MO just called to let me know she is coordinating with my main doctor here and they are ordering an MRI too. This is the best I have felt for a long time as a result of this team working to have all bases covered. Also Friday I was able to walk over to BCCA for the first meeting of a coed metastatic support group which will meet once a month. I have seen some amazing doctors since I arrived but my main pain physician said today she would like me to stay one more week. My meds are being changed while here. I am on a lidocaine pump to. I will let you know what we have settled on next week but already feel better and am no longer comatose in the morning when I wake up.
Marian
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Marian - So glad you are feeling better!
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Wonderful to hear Marian. So glad they finally have things under control.
Saw my MO today, all stable. Now if I could only stop coughing up junk....Pat
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Marian - sounds pretty solid - a lignocaine infusion is a great thing for neuropathic pain. Well done for getting it all organised and sticking with your plan.
Wishing everyone going through treatment - gentle days and as little side effects as possible.
We are in our winter school holidays - trying to get out and about a little.
(()) to all
😊
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Great news Pat and Marian. Ioana- enjoy theholidays.
I have agreed a 3 day week next Sept. I finish for this year on 12th July and cannot wait.
Jojobird- I read your blog and found it very moving. You are a talented writer. Sending love to all x
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Great News Liz - well done on negotiating!
Jojo - second Liz - brilliant blog.
😊🌷
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Well done Liz! Now let’s see how I do when my boss returns...
Experiencing a relapse today. Had a bad night due to incessant coughing. GP still not happy with my lungs and for some reason the headache and low grade fever have returned. Sigh.... this is starting to get very old... two weeks and counting. Grrrr!
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Marian,
So glad to hear you are feeling better! Hopefully one more week will give another boost to pain relief. It is so interesting to me that hospice offers palliative care for pain relief— this is so good that your team offered this. Hugs to you.
Sadiesservant, I’m sorry about the cough and relapse and am sending you healing thoughts.
Thank you all for the kind words about my blog.
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Marian so glad to hear hospice has your pain under control.
JoJo lovely poem!
Pat is the coughing easing up?
Loana enjoy the holidays.
Liz great news on shirted work week.
I got the genome tests back. I have 6 mutations. 3 have clinical trials, 2 have no treatment therapies, 1 has a treatment called Afinitor. Afinitor ies fir Her2+ and I'm HER2- but the gene mutation is PIK3CA. Afinitor works on PIK3CA. My insurance denied it because of being Her2-. My oncologist appealed it so waiting to see what happens. I feel like I'm on borrowed time and waiting for insurance to ok a drug that could help is just unacceptable to me.
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Hi Di,
Glad you finally have the results. Push on Afinitor, it’s not for Her2+. I don’t know where they are getting that from. Perhaps it is something else? My MO has mentioned Afinitor (Everolimus - often combined with Eximestane) several times as a possible next step in the sequence of hormone treatments. Claire did not have much luck with it but some have responded well. I’m not overly keen on it as one of the possible side effects is respiratory complications - bit concerning given my compromised lung.
I agree, it is unbelievable that health insurance companies are able to play god in this way. How dare they deny one person and approve another based on what?
Thinking of you Di and hoping you have a solid treatment plan soon.
Hugs. Pat.
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Pat thank you. My oncologist now is trying to get it approved under (forget the term he used) life and death situation. I also got a call from the nurse where oncologist was trying to get me into a clinical trial so I have an appointment Monday to sign paperwork to have my tumor biopsy tested to see if I qualify. Test results will take 2 weeks. I really hate the waiting knowing how aggressive my cancer is. I pray that the radiation is still doing it's job and that there aren't any microcells somewhere else in my body. Damn insurance companies...
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Di,
I’m thinking of you as you wait on this. It is impossibly hard.
Pat, wishing a well overdue end to this respiratory problem.
Love to all
Liz
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Div, Keeping my fingers crossed so that the Afinitor is approved. Please keep us posted. It is so difficult to wait.
I have my CT scan tomorrow. I've had three rounds of Taxotere/Xeloda combo so far, and my onc wants to see if the treatment is working to shrink my tumor. If so, then yay! We can proceed and go ahead with surgery to remove it, and continue with Xeloda.
If not, then it's clinical trials and who knows?
I'm nervous but also resigned. It is what it is. I'm headed out to the redwoods today to do some quiet hiking and reflection before the onslaught of information and decisions.
Love to all.
Jojo
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Good morning,
The CT scan showed tumor shrinkage, which is good news. Still, I remain cautious. Do you know what I mean? I'm not jumping for joy. I'm grateful but quiet.
Hope you are all well.
Best,
Jojo
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Jojobird,
This is good news. Doesn’t get any easier though. I get that.
Thinking of you.
Liz x
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I think it sounds like great news but also understand the caution. One day at a time! Hugs. Pat
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That's great news Jojo!!!! fingers crossed it continues like this!!!
Hope everyone is doing well and you are all stable!!!
Hugs
Lola
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I feel like it is been ages since I've written. My second week in hospice involved what is called a methadone conversion. I was switched from all of my Oxy drugs to methadone over just a few days. It would have much longer at home with no supervision. It was actually a good rest too, to be honest. I was in the full two weeks and got out only the day before Dick and crew sailed in.
The methadone I came out on was not enough and I saw my pain doctor at BCCA yesterday and we increased the dosage. I also saw up a specialist on nerve blocks and will likely have one in August. Being an inpatient allowed me to have tests done easier as I was readily available when cancellations happened. I had a CT with contrast, a full bone scan and an MRI. The chest CT shows my tumor as being stable in the bone scan has a couple spots nothing major but the tests will be redone in three months. I also saw my MO this week and went over the tests again. They cannot get comparisons from my MRI last week to the one done last summer for the initial mets diagnosis because it was done in Vancouver. Shr has sent for it and next month I will know if any changes.
I have joined a newly created support group at BCCA for metatastic patients and not just breast-cancer. I think there will be 10 of us and we will meet once a month. The first meeting took place when I was in hospice but being on the same hospital campus meant I could go. With the second month coming up there maybe one or two people who could not come the first meeting but after that there will be no admissions until 4 to 6 months so that we can create bonds and make goals together. I'm really excited for this and found the first meeting to be helpful.
Happy summer to all of you and I look forward to being present on the thread again. Dic and I sailed to a gulf island for Canada Day weekend and I took a ferry home Monday for all the usual monthly appts. and am heading back this afternoon. It is wonderful to have him home.
Cheers, Marian
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Hi Marian,
Glad to know things are moving forward with the pain management and that scans show positive news. I imagine it is a big relief and, of course, it helps to have your husband home.
Interesting concept for a support group. I would be curious to know more of what they are trying to achieve as I must admit that I am quite taken aback by the idea of a “private” support group that is limited to a handful of people who signed up early.
Well, must get back to my garden. Sending hugs to all.
Pat.
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Hi everyone
I have been very quiet on the forum, but have been following everyone each day. Marian, glad to pick up on much positivity in your post. For me this is the hardest part. I hope the support group gives you strength. Pat- I hope you have some great memories of the UK trip. Doesn’t time fly. It doesn’t seem so long ago that we were chatting and laughing on the phone! I will PM you. Claire I have PM’d you. Sending a huge hug your way...
Jo-Jo I was very pleased to see your response to treatment and it appears that are some options to try for you. Hiking- how lovely! I like the sound of that. I have a knee issue but I have a great physiotherapist and she is hopeful that my symptoms will improve. I was hobbling about last weekend but the swelling has reduced a bit more recently.
Ioana- how are things with you?
My home life is a bit challenging at the moment causing me some problems and I had to curtail plans I had made this weekend. Teenage daughter skipping school. Working through it though and trying to build the relationship up. When things go wrong in our lives we have that extra edge of concern. It is almost like I want to say that I don’t have time for this!
Luckily, my end of term approaches on Wed 11 July. 3 school days to go. I can finally devote some time into exercise, de cluttering and a family holiday to London and then Brighton at the end of July. We have 2 days in London. Going to see Agatha Christie’s ‘ Mousetrap’ on the first evening and then for Lucy (15) and Cam (17) a visit to The London Dungeon; no I won’t leave her in the Tower!!
A week in Brighton follows. We just need this heatwave to continue now, along with England’s progress towards the World Cup Final maybe? We can only dream!!!
Jack had mixed A level results. These are the exams that are used for predicting the final grades and essential for university. He got a splendid A grade for Biology and two C grades for Chemistry and Physics. So Physics is to be dropped and instead Jack will pick up Advanced level product design. He should have taken this one year ago really. He enjoys Physics but ultimately needs an A grade in order to become a doctor and so this is the right choice for him moving forward. It also means that he returns to making things out of wood in my parents’ garage!
I move to 3 days at my school in September. I hope to fill those days with things for me. I want to be fitter and eat better and laugh more and visit people without having to do so in a 2 day time frame.
Well that is all for now. I leave you as I enjoy the early morning peace before everyone else is up. I have a cat on my knee and yes another day of sunshine.
Love to all
Liz x
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Hello everyone! So good to hear from others and news.
Jackboo, I'm so glad you have some early morning sunshine and a cat. Sorry to hear about your daughter's issues - it is very difficult to deal with our children when we also need to heal. Is it possible she is reacting to your health/diagnosis? I am hoping you get some respite and that she is able to work through this. My own daughter threatened suicide during my treatment - police were called to school, and she ended up in day treatment for depression - but things have calmed down a great deal and we are on a better path. Empathy to you.
Marian, I am thrilled to hear that the tumor is stable and that you did get some rest/respite from pain with the methadone. What is the long-term pain management plan? The support group sounds great. I was in one for over a year - we met weekly, and the friendships formed have continued to this day. I do think keeping it "closed" for awhile is important in order to build safety and trust. I hope it works out for you. And so glad your husband has returned.
I'm home for the summer with my daughter, which means some lazy days, day trips, clutter and projects, baking, laundry, coffee.Treatment continues, is working, but leaves me alternately tired and at about 50-60% of normal energy level. Daughter is heading to camp in a few weeks but in the meantime it's a slow groove through a San Francisco summer. I'll take it.
Love out to all.
Jojo
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