Shadow in chest is recurrence
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Marian: popping in to say "Hi" and I often wonder how you are doing. Are you home yet? Having "crazy pain" is cruel and unfair. I know it is an effort for you to dictate so I'll check in periodically to see how you are faring.
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Bright, where in Oz do you live? Your birds are so wonderful and I love the king parrot you posted.
Elderberry, how did you come up with your avatar? Thanks for dropping in. As for the crazy pain I know I am lucky to have had the embedded pain pump surgery in the fall. I just never expected to have had it increase like it did and to lose yet even more independence. I have always been active and independent and the 8 years of cancer had me learn a lot about myself and others too. This latest blow though has taken me right back to the stages of grief. I am angry and sad within minutes at times. I have yet to find a way to see past this. My home care nurse today did put in a referral to a counsellor at the hospice I have been in and I know her from those times. I hope professional help will help before I push my family away. Actually my daughter and partner support the counsellor idea and in general are very helpful. My husband has been good too with everything he has to do but is silent when it comes to getting help or discussion about my cancer.
Fucking cancer eh
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I hope that someone on our thread is out there in the quiet.
I have been surprised by the quiet on the boards. I am not on many but have always appreciated the support.
I am really struggling and despite some ups there are more often downs. Being almost sedentary is ridiculous especially since my cognitive ability is good even on crazy high does of opioids. Covid of course is hard for everyone and I do recognize in my case that socialization is not so often. I had a friend come to stay from Vancouver for 2 nights in July while my husband went sailing and we had a good time. It opened her eyes too about my condition. My pain is such that I have tingling and that numb feeling that comes from the anesthetic bipuvicaine (marcaine) that is mixed in the same amount as the opioid sufentanil in my pain pump. It is like the feeling of dental freezing wearing off but mine is many times higher and 24/7. Then there is the neuropathic pain from my scapula to my shoulder and down into my hand that is lessened somewhat by the pain pump meds plus oral methadone and ketamine. I use ketamine intranasal spray for breakthrough 4-7 times in 24 hours. Lying down is the best position and when up it is often only a few minutes before the pain is too much. There has been NEAD for ages so the pain issue sucks. I had a CT of neck, chest, abdomen and pelvis yesterday, routine. I got a call from MO secretary today and am to come in Aug. 18th, a week earlier than planned. I questioned why and that I had a CT yesterday and she said results would be discussed when I see her earlier than original appointment. Who knows but not really worried. In a way it might be a relief if positive as living like this is not how I want to live but am too young and healthy to go down the other alternative now.
Love to you all,
Marian
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I’m here marianelizabeth.....been thinking of you. Your pain sounds exhausting. It must by frustrating for you....brain is active and ready to go and your body is unwilling and unable to do so. I’m chugging along...still in Reno hell, it might be finished at the end of August. I am so done with it. I have a CT scan on Monday so fingers crossed I am still stable. Please keep us posted on what you hear. Can we do a phone call this week
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I saw this pop up when I looked at the active posts. I'm not good, as many of you are, at remembering all the names, but know that each of you have the love and support of another. I'm sorry for the pain some of you are in. I'm early in my Stage IV diagnosis, and it breaks my heart to see what some of you are going through. Sometimes, there are no words to offer except to say, "I'm sorry. That really sucks!"
(((hugs))) Carol
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Hi Marian. I am sorry to hear that you continue to deal with so much pain. It’s unfair, particularly as you are otherwise holding your own with this crappy disease. I wish I had some advice to offer. I have been dealing with an uptick in pain as well in my low back, right hip and neck (not sure if it is due to cancer or degenerative issues) so do know how wearing it can be but have no experience with the debilitating effects you describe. Can Hospice help?
It has been oddly quiet on the boards for months. There has been some discussion on one thread about changes to search engines impacting folks finding the site and topics which may explain the limited activity. Unfortunately, we have also lost a number of our dear friends in the last couple of years. The comforting nature of BCO has changed for me to some extent as a result.
Pots, I hadn’t realized you were doing renovations. I can relate to the “hell” comment. We’ve been doing work on the house in sections and can say that drywallers are the worst! OMG. The dust and filth gets into everything. I saw from another post that you recently switched from LTD to retirement and wondered why. Were you at the magic age or were they trying to push you back to work? I’m still grappling with the whole issue of work. For a decisive individual it’s astonishing how much I struggle to make a decision. Getting closer but....
Sending hugs to all. Pat.
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Hi Marian, so nice to hear from you but sorry to learn of your pain. That must be very difficult and exhausting. This stupid covid sucks too and is complicating so many things. Wish we could all get together in person again but it doesn't seem likely any time soon
Pots, fingers crossed for good scan results.
Sadiesservant, I was just thinking about you a few days ago, wondering what you'd decided about work. It's tough to turn some pages in our lives.
I'm physically good (well apart from fatigue and this weekend, oral thrush - sigh) but my treatment plan is all up in the air as the Roche clinical trial I was in (brand new huge international trial) got halted. No safety concerns, "just" evidence that atezo+taxol has no benefit over taxol alone (for mtnbc with PD-L1 expression - which is me!) Prev trial showed atezo + abraxane had both progression free and overall survival benefits. Meeting with the team on Wednesday to sort out next steps but I think will finish this cycle (2 more treatments) and scan at end of August & decide what to do next.
Dh is making me a small fountain for the deck, in an old half wine barrel; that's the extent of our home improvements these days. We were supposed to be making bedrooms in the basement for our adult kids but now nobody has energy or motivation for the project
Hugs everyone 😊
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Good to hear from you as well Moth. Your comments on work resonated. Tomorrow is my first day back after some vacation and I am thinking through my strategy. Challenge - it appears one of my employees has taken another job (given budget pressures not sure I can fill the vacancy) and my ED has booked three weeks off at the end of August. She deserves the break but I am second in command so that adds some pressure. Appointment with my MO on the 18th and will need to broach the subject. Of course it would help if I would take sick time when I am struggling with SEs etc.
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Hi Marian
I have just realised that it was April since I posted last although I have jumped briefly onto other threads.,
Really so sorry to hear that you are in so much pain. Hoping that something can be done. Your inner strength is shining through and I know we can’t offer much but we are here to support.
The lockdown period here has resulted in a busy, packed house. Both my boys came home mid March from university and my daughter was furloughed from her job for 4 months. All 5 of together!
Well we have got through it and have come out stronger for it. At the start of the pandemic, my Dr and o decided that it would be safer to move to the Herceptin only injection which effectively ended my time on Perjeta. Much better! No more cannulas.
I scan again in late Aug/ Sept. Time to hold my breath again.
On Sat August 1st I turned 50 and held a small family party in the garden. The theme was gold and we all had an amazing time.
Finally, I have written the first chapter of my book and am enjoying that as it keeps me mentally fit now that I am retired.
Every day I feel grateful that for now I’m ok. Sending a massive hug and support to you Marian.
Liz x
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It was nice to see some response to my message a couple of weeks ago. Happy 50th Liz and let there be many more decades ahead. Let us know how your scan goes. Pat, I hear you about renovations and work and wonder if the work one will eventually slow down or if you will take some time for yourself. How is your mom? Welcome Carole and I hope that you stay with us here. I see moth and pots on the BC thread so have kept up with them and their treatments and ups and downs.
The following is pretty much a copy paste from the BC thread. The results from my CT scan which I got on Tuesday with an in person appointment with my oncologist yesterday surprised me even though I had a head's up Friday from my BCCA pain doctor. More progressive metastatic disease than expected and I was shocked really. My MO thought the report was badly written as did I but she has ordered a PET/CT to be done in the next 2-3 weeks and chemo Eribulin will probably start next week. "Never say never" with my decision once again to start chemo was a decision made once we discussed the different circumstances from November to now. Then I did not want to add one more thing to my broken body and my pain was nothing like it is now. One of the tumours in my chest wall that we can feel is "not open yet" a quote from my MO. YUCK. The other mass is in an odd area in my upper medial chest and we look forward to finding out more from the PET scan. Again I was surprised that I did not feel the lump myself but but with all that centres around my pain my MO said that she herself was not surprised. There may be a few tiny nodules in the upper lobe of my right lung that are growing too. Weirdly though I am emotionally wrung out I feel strengthened knowing more endurance is needed.
Over the past few weeks I have got a couple of pars of pullets (young female chickens) and for those who remember, keeping hens for 4 years in Vancouver during cancerland was a blessing for me to care for and enjoy. My deck garden with the majority of plants grown by seed has also been a positive. I am still lying down most of the time and manage what is needed very carefully. Still, life is a roller coaster and I can go to anger to sadness and back in nano seconds.
Love Marian
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Marian 😊
I am here too. I read but of late don’t always know what to say. I have read your pain plan and I get the drugs. I am so very sorry you are going through this. I remember the Vancouver chooks, and the photo where you were feeding them and that you told me yours were partial to yogurt treads.🐣I still have mine and they bring me such joy!
I try and walk Marian, because I enjoy it. And try and find spots of water. This is for you. I still smile thinking of you in the snow with your family, or the fab hat in the sailing picture.
Happy 50th Birthday Liz!! It sounds like a wonderful party! Soooh happy to hear that you are writing. 😊🌷🍀 I am happy you are on shots only, stupid IV cannula ...
Pat - we write. I woke up at 4am yesterday to pay for my “things will just have to fit in” moment - ha! Still searching for a strategy...
I am ok. Older, crankier, I creek a lot these days but ok. Covid made work oddly hectic for a while but we have had good control in Queensland. I am getting to know our local farmers, and indulging a little. Trying to read more. Started going fishing...
Hugs to all aplenty,
Ioana 😊🌷🍀
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Ioana, my son and partner (she is from Brisbane and they met online in Oz three years ago) sailed from NZ with my husband as far as Hawaii 2 years ago and were here on Vancouver Is. with us either side of a year up island when Steven did a post grad business certificate an a uni. They were back with us 6 months saving money to go back to Oz and left January 21 just in time for Covid. They wanted to go to Melbourne but instead have been using their savings living with brother/partner in Tywoomba and her parents in Brisbane. They have given up hope for Melbourne and are now trying to find accommodation on Sunshine coast and the jobs. Hard to do they say. I miss them a lot as they were amazing young people to live with.
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Marian 🙂
It sounds like they got here just in time, so much is closed here. We have low numbers but it has come at a huge economic price. Its hard for all young people at present but hopefully things will settle a bit more in the next six months as we are all learning to live with covid.
When do you start Eribulin?
Hugs to all,
Ioana 🙂🌷
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Hello Everyone,
Well... that summer went fast! I can't believe it's August 31st already. Things continue to be busy with work and home. I'm acting ED for the next three weeks so we shall see how that goes!
I continue to try to figure out how to find balance in my life. I know most of you are probably rolling your eyes as this has been a recurring conversation with me. I do find it hard to know what is the right decision given the uncertainty of the disease trajectory. My MO recently commented that none of us has a crystal ball unfortunately. But, with the exception of bone/back pain (bone scan scheduled for September 21st) and side effects, I continue to do well. And it's nice to be at a place where my salary provides mad money... now if I only had the time to spend it! Ha! (And increasingly a place to spend it... COVID does make it a bit tricky.)
Marian, so sorry to hear about further progression. I know from experience how it knocks the wind out of our sails. I took a big psychological hit when I had early progression and never really recovered my mojo completely. Hope that eribulin knocks it back.
Liz, so happy to hear that you are writing. How exciting (and amazing with a full house). Do you have a date for your scan? I'm thinking of you.
Ioana, funny that you chose a picture of a waterfall. It reminded me of my first trip to Brazil when I was doing international development. I made some side trips, one of them to a place called Foz do Iguassu which lies at the border of Brazil, Argentina and Uruguay. It has the most spectacular waterfalls - one of the worlds largest, stretching 2.7 km across. There are hundreds of cascades. I was actually there a couple of times but the first trip I walked all the trails on the Brazilian side, gasping in awe at each of the cascades and taking pictures along the way. It was actually quite ridiculous as I came home with at least one hundred photos of waterfalls! (This was pre-digital cameras so it was still a case of printing them all.) The one upside, with so many to choose from, I could pick the best for enlarging and framing.
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Hi everyone
I am currently on holiday in North Yorkshire. Just a short break. Gorgeous English village with a lovely pub serving delicious food and lots to explore. Visited Castle Howard ( pictured)
Yesterday I cycled for 12 miles along the coast. Here are some photos.
I scan on Fri- yikes! Still on Herceptin injection. Dropped Perjeta in March.
Sending my love to you all.
Liz x
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Looks lovely Liz. There are certainly no shortages of castles in Britain!
In your pocket for Friday!
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Got the call today to say my scan is stable. Massive relief.
L x
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Massive relief and good reason for celebration Liz. Have a great weekend.
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Great news Liz! Cause for celebration for sure.
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yay jackboo!
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jackboo - WOO HOO!!! Congrats.
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nice to see you here Marian - how are you and how is eribulin working for you?
Hugs
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Hi All,
Thought I would check in to see how folks are doing. Marion, how is the treatment going? Any relief from the pain?
I’ve had a bit of a time of it lately but overall things appear to continue to be relatively stable. To explain, back in July I was having increased pain in all my hot spots with known bone mets that have caused issues. Right hip, lumbar spine and neck (with some right rib twinges thrown in). I was also experiencing constant low grade headaches but figured they were due to degenerative back issues.
Fast forward to about three or four weeks ago and the headaches were worsening, seemed to be exacerbated by computer work and walking (20 minutes into my Sadie walks I could feel it increasing and by noon on a work day my head was pounding as of a couple of weeks ago). In addition, I noticed sensitivity/pain on the back of my head (occipital bone) which was very noticeable at night with the pressure of my head against the pillow and some odd sensations along the right side of my tongue (not numbness exactly but I know it’s there if that makes sense). This made me wonder if it was the skull base mets acting up. Of course, as this has gone on my neck has become increasingly tight which is not helping!
Scheduled bone scan came back stable but that’s not precisely a good measure in my case as it always underestimates my bone disease. Reached out to my MO and he fast tracked me for a brain MRI (okay.. scary stuff alert!) and thankfully also prescribed a steroid to reduce swelling which has reduced the headaches substantially. Received his call back yesterday and thankfully the brain is clear. The skull base and cervical spine mets are still noted but there is no clear evidence of progression. Having said that, he feels clinical signs are indicating subtle progression which, in the head and neck area can cause issues even if it’s a millimetre. He is recommending radiation and is reaching out to my RO. At this point not sure what she will propose as I suspect the cervical spine may need zapping based on how this has played out but unclear at the moment.
It’s been a rough couple of weeks which has coincided with over the top craziness at work. Demands have been high which, as a result, have meant I didn’t take the time off I should have. The one positive is that it has opened up the discussion of scaling back with my boss and my MO so I am starting to get things organized on that front. I’m thinking of reducing to four shorter days per week to better cement boundaries and give myself an extra recovery day. (Potential radiation complicates the plot of course as I may need extra recovery time given the possibility of collateral damage.)
That’s it in a nutshell. Waiting to hear from the MO and trying to take rests through the day to get my neck to calm down (although so far it’s not going well). Headaches much improved but the dexamethazone is giving me dry mouth, taste issues, nausea and, of course, insomnia (awake at 3:30 AM this morning 🙄 ). Good grief. And the worst part is wine tastes like crap! Thankfully they taper the dose fairly quickly so I am hopeful things will improve on that front soon.
Sorry this was so long. Hope you are all well!
Hugs, Pat
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Oh Pat, what a time you've had. SO glad the brain MRI came clear. I'm sure that must have been a big anxiety inducing thing (which probably wans't helping with the headaches either). I hope you get your RO consult and a plan soon & the pain continues to ease up. I have to take zopiclone now to sleep and a bigger dose on days I have dex (my taxol days) and even then I sleep way fewer hours than normal.
Hope things calm down for you at work & with the treatment.
Marion, yoohoo, how are you girl? Aren't you back on taxol now? How's it treating you?
I'm well. We (dh & our adult kids) went camping for a week in Osoyoos, we stayed in a tent, boated, and for minutes at a time I forgot about having terminal cancer
Started Cycle 8 of atezolizumab+taxol yesterday. I'm finding this a very tolerable treatment atm. Can't taste things & have fatigue but not so bad that it bugs me. WBCs are crap even with grastofil so I have to be super careful about infection control. And am gaining weight - always hungry. But last 2 scans I had significant regression on my liver mets! Fingers crossed the trend continues for next scan on Oct 23. hugs everyone
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Hi Moth. Good to hear from you. Great news on the liver! And weight gain is not a bad thing. With all the ups and downs a little extra can’t hurt. 😉
A the little blue pills. I tried to get a prescription from my GP some time ago but he resisted.
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ugh Sadie you’ve had quite a time lately. Hmm...methinks your body is yelling at you to stop working so hard and so much. I’m relieved you will reduce your hours and days.....please give yourself extra time to recover during radiation!!!!
Moth....good to hear you went camping. Osoyoos is one of my most favourite places in BC, I hope you got to sample some terrific wines too. I’m relieved that the treatments are doable and keeping things beat back. I figure that’s a win so yay!
Jackaboo.....stable is a gift, music to my ears. Sounds like you have settled into your new life. I love the photos you post of the various places you get to....I’m living vicariously.
I’m on cycle 14 of Alpelisb and Faslodex. Things continue to remain stable. The SE with this drug are not easy and my dose was reduced to 250 mg at cycle 9 due to blood sugars shooting up even with Metformin. My QOL has improved hugely and I have days now where I even have some energy. I feel like I can actually live between scans...as much as we can during COVID (staying in small bubble and not going anywhere). We finished our basement Reno in September, got things moved back in and I’ve unpacked What I can. Yesterday we hung our art up and our little house now feels like home.
Be wel
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Thanks Pots.
I'm happy to know that you are holding stable on your treatment but hear on you on the side effects. Verzenio not a walk in the park either - looks good on the ad with folks skipping out the door but I hope they have a change of clothes in their bag! GI issues are intense and unexpected. Thankfully I don't have the issue of blood sugar. There are a few ladies I follow on that drug and understand this is a notorious problem.
The whole work situation is simply out of control. While I get this is an unusual circumstance with very tight timelines on a big project which needs to launch asap, the timing has been incredibly bad for me with all the other cancer related stuff going on. I'm not even on the core team - just liaison for our Branch and the external partners - but am being pulled into things left, right and centre. After a great deal of back and forth to set up a meeting late yesterday, I had a call with a partner at 8:30, then a call with a cast of thousands at 9:00 that went on for an hour. I need to get notes summarized from the meeting, get a contract drafted and be ready for another call tomorrow at 2:00 PM. Happy weekend! And somehow I need to do this while stepping away from the computer often enough to keep my neck from seizing up. Oh... and wouldn't it be nice if I could actually get to some of the things I need to do around my house before fall/winter settles?
But, on a positive note, it is a clear demonstration to all that the boundaries I tried to erect before are not working. I must cut my hours and take time to recover as needed. This includes recovery from radiation.. whatever that looks like. Anticipate I will "see" my RO next week. (Not sure if she will do this in person. I hope so as she's really awesome, walks me through scans showing me problem areas, etc. Given that there is a bit of uncertainty regarding which of the little blighters is causing the issues, in person would be my preference. COVID be damned.)
Well, must get back at it. Wish me luck!
Pat
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Shit, I lost my post for the second time and this time for opening up Moth's blog without opening a new Internet page. Maybe that was it a day or two ago. It almost makes me cry because my energy is not high and my emotions are. My day started at the Royal Jubilee lab where I actually had a 10 o'clock appointment but forgot my requisition. They left a message at BCCA but after half an hour I asked them to call again and they claimed had sent it right away. By that time I had already sent my husband home for the copy. They will not call the IT team until the requisition is in hand and that took another 45 minutes by which time I was almost in tears then too.
So now I will rewrite this post without looking back ha ha. Part I had started with you and I am so sorry for all of the work and mess that you are going through. I know that your last post was October 3 and there was one a day before that too. You have so many things going on at the cancer agency not to mention the fact that your workplace has been unable to respond to your needs. I sincerely hope that by now you have managed to make changes that you should not even have to initiate. As for your mouth I also hope that your team including your oncologist and RO have come up with a plan. Glad to see that there is no brain involvement with the skull continue to cause problems. It looks like you were on the same chemotherapy as Ann and I have discussed her G.I. issues before and they must really put a wrench in things when you have to be out and at work.
Moth I also read your blog posts and I'm wondering if you are on Taxol? I was on Taxol in 2012/13 and did nine cycles last year and found it tolerable. The second time around neuropathy and tinnitus were the reasons I had to stop. I am now on Erubulin and tomorrow will be the end of cycle 3. I am so glad you got away with your family to Osoyoos. How are you managing to gain weight when everything taste so bad? Good for you!
My MO is giving me a short break after my chemo tomorrow until Nov. 4th as my son's wedding is at our home on Halloween and he and his fiancee and her son are coming from Terrace via Prince Rupert on the ferry both ways. It is a small group of nine of us plus the marriage commissioner and photographer. Still, there has been a lot of work, thankfully often on the phone or Internet. I have hired a helper/companion who comes for two hours Mondays and Fridays in the morning. She and I I went to a really great vintage clothing store last Monday to look for a 20s outfit for me as that is what the wedding theme is. We went back Friday so I could try things on with her help and at times also the sales lady who was wonderful. Photos will come in a few weeks. Crushing fatigue is probably my biggest side effect and those outings took it out of me for sure. I have made myself go for short walks every day as I finally realized that is what we were told to do both times in chemo class.
Love to all of you, Marian
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marianelizabeth: I don't know how I totally missed your question back in May. Or maybe I did so please forgive me repeating myself. Years ago CBC ran a radio show called "Dead Dog Cafe". It was written and performed by First Nations actors. It was hilarious. They invited people to send in their names and receive an "Indian" name . Christian first name. Attribute second name. Last name would be mineral, flora, fauna etc. I got the name Katie Maternal Elderberry. I loved it. Elderberry is a healing plant. It is also a sacred plant (The Elder is the Lady's tree, burn it not or cursed be) I was very pleased. It seemed like a good name to use.
I am looking forward to seeing your 1920's outfit. Do you watch Phryne Fisher Mysteries? Her clothes are so gorgeous, I can watch the same episode over and over just to look at the clothes. Eye popping, jaw dropping fabulous.
Hello to everyone else!!
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Hi Marion.
It’s good to hear from you although I am at you too seem to be dealing with challenging situations. It hasn’t happened to me often but I can relate to struggling, feeling a bit wretched and things just not going in my favour. Fatigue makes it much harder to bear. Sending hugs and hopes that a bit of exercise will help improve things. (That is one advantage I have. Sitting is not an option with Sadie.)
I have a call with my RO Friday morning and must admit I am anxious to get in with treatment. While the steroids have been very helpful, completely knocking out the headaches at 4 mg, now that I have tapered to 2 mg I can already feel the pain/ headaches starting to return. This after only 2 days on the lower dose. I’m sure that without the steroid I will right back to where I was but, at the same time, I can’t abide taking them. They are impacting me in so many negative ways with chronic insomnia, mouth issues, lack of taste... argh. Talk about the lesser of evils!
Work a bit calmer today and hoping to take some time off over the next couple of days. Wish me luck!
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