Shadow in chest is recurrence
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and I did say I can’t stop - I take metformin and a small dose statin, so yes to London if it was me;
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Ioana, I am hoping you might have some knowledge about a more invasive block that has been discussed since the start of seeing the doctor who does my nerve blocks. BTY he is an anesthetist who did a specialty in all this stuff in Scandinavia and works 4/5 in this field and the other in anesthesia. A year ago when I was in hospice for pain management he gave me a number of options that we have discussed. We went for the nerve blocks called stellate ganglion blockades that worked for the last several months but now this one has become a point of discussion. This he called an intrathecal infusion running a combination of bupivacaine, hydromorphone and clonidine.
I saw my MO yesterday and she thinks there likely is progression. Tumour markers are higher, the pain worsens by the day so Taxol has been stopped and after she conferenced with the team, I will start Gemcitabine next Thursday and a PET/CT has been ordered. Our machine is brand new and only started up a week or so ago. Luckily I got a cancellation appointment for tomorrow afternoon with my pain doctor at the cancer agency. My team has been all over my pain and want me to stay on top of it with as much Dilaudid as needed. I have been sleeping through the night for a long time but this morning I woke up 0400 with pretty bad pain so took two mg tablets as advised but needed to do it again at 0500, 0600 and 0700. I felt like going to the hospital. It seems to worsen daily and I do not understand it at all. And this is on top of my Metadol which has also been increased.
And this is on top of my Matador which has also been increased.
Diane, I think you can relate with neuropathic pain.
Maria
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Marian,
I just caught up with your message. I am so sorry you have pain, and that does not cover it. I will write more tomorrow (11pm) but my ( and we are all different) answer would be yes - you would get benefit from it - and it is next possible step following stellate. You may get arm weakness from it ( almost surely) but given your pain I doubt you use your arm a lot. The specifics depend on how they set it up. I will pm tom morning you but sounds like you are in the right hands.
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Today I start a new chemo, Gemcitabine. My appointment is at 1:30, so not far off. We have friends here visiting from Calgary and had hoped to go out on our boat for three days following. The pain has been increasing, my Metalol dosage increased as well as Hyromorphine and it is still hard to contain the pain. My team is well aware and yesterday I heard from the pain clinic nurse that there was a team meeting over in hospice and apparently my case was on the agenda. The doctor who has been doing my nerve blocks and will do any further surgery was there too. His clinic was closed for a two week holiday break. It is doubtful that any surgery will happen quickly, both because it is summer and this is a specialized surgery requiring approval from higher up. At least this is my understanding. Back to our friends visiting~ we just drove down to the beach to go for a walk and just being in the car made me crazy, the pain was so bad from the scapula down to my hand. It was unbearable so so my husband brought me home and I persuaded him to go back with our friends. I fully realize now that there is no way we can go to our boat. Just driving to the ferry would be difficult.
I will keep you posted as we see what happens. I will have my chemo nurse today call my MO and/or pain clinic to report the latest. i feel like such a wimp sometimes and keep thinking there are others who must have worse pain than me~~but then my pain worsens and I realize this is real. Lying down helps but as ny cancer agency pain doctor, says~~"Do I really want to lie down for the rest of my life.
I hope the rest of you are doing better! Excuse any errors as no energy to check.
Marian
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Thank you so much wren and nice to see you here where there is an awesome group of women. I went to chemo this aft and heard twice from a pain clinic nurse who was in touch with hospice. The very latest is that we are waiting for the next hospice bed as the doctor who will do my surgery has been in touch and will be assessing me as soon as I get a bed. With the pain as it is, I am relieved!
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Marian,
I am thinking of you. I don’t know what to say ( offf ...I seem to be starting a few messages these days with that). It sounds like you have a good pain team and that they are proactive at staying on top of this - although with nerve pain it is very very hard. I don’t do this work - I do acute pain mostly because it is soooh tough. You are bloody incredible from where I am standing and I am hoping that intrathecal infusion kicks butt.
🙂🌷
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I am in hospice and surgical intervention looks probable. I have a pump with hydromorphone and I can press every hour. Tomorrow we will find out more. This last week was amazing in terms of how much hydromorphone I took as well as a big jump in the dosage of methadone and even then it was hard to deal with. We had friends from Calgary visiting and we were supposed to go out sailing. You all know me and it is hard to say no but I finally had to say it. I also started a new chemo on Thursday. Gemcitabine. More tomorrow as it has been a long day. Dick sounded relieved when I called him tonight.
Marian
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Marian,
Glad you are in a place where both the pain meds and new chemo regime can be closely monitored. Your mood seems positive which is half the battle. I’m sure those friends will understand and take a rain check.
Liz x
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Thanks Liz. Chemo has been cancelled for this week as surgery is Monday. My MO did not want my blood levels to drop pre-op. It will be a temporary insertion of an intrathecal catheter with the tip extending up the spine to the space where the tumour is. Spinal anesthesia and 1.5 hours approx. I will have twilight sedation. I am hopeful but nervous just know I cannot live in pain not mobile.
Marian
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Hi Marian,
My thoughts and prayers are with you for Monday. I can certainly understand the nervousness. You are one tough cookie. Sending hugs. Pat.
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I’m in your pocket Marian on Monday. Fingers crossed for you that all goes well. You are tough and feisty lady. Be well.
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Thanks my sisters. I hear more every day. Monday will be temporary to make sure it works so they will monitor it for a few days and if it is effective then back I go to surgery for an implantable intrathecal infusion pump insertion. Ketamine given orally as a liquid was added yesterday at 3 times a day and this afternoon for the first time in days the pain eased up. Not like the pain has gone but I can actually walk down the hall without a burning, throbbing pain that usually begins immediately.
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All quiet in the threads I read. But I wanted to say that I read Jo’s latest blog, beautifully written as always. Jo, I admire you so much and hope you have managed to spend good time with your husband and daughter this summer. If you do read here, I submitted a request to follow you but clicked on the wrong place this morning when I got the response. It had gone to junk and when I tried to move it, it disappeared. I will continue to read anyway. I hope the rest of you are aa well as can be this weekend.
😊❤️ Maria
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Maria,
Thinking of you tomorrow!! when you post I am reassured you are in very good hands - Ketamine was a nice touch. You are an incredibly strong woman, I dont say that lightly.
We are here for you.
( on a light note I have been spending time with my son playing tennis - he takes lessons and I encourage him to practice - I am beyond comical clumsy )
Hugs,
Ioana 🙂🌷🐣
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Marian,
I will be thinking of you tomorrow as well. I wish you great success in getting your pain under control.
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Marian, thinking of you. Sending you warm hugs. Still hanging out in your pockets to keep you company.
An
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Day 2 post op. Copy/paste from a post on Facebook Canadians with metastatic cancer. I am pretty tired and knew you would not mind.
My temporary intrathecal catheter insertion was done early yesterday and so far so good. I was on 24 hours bedrest as a precaution against headaches just in case there there was a cerebrospinal fluid leak. It has been decades since I used a bedpan and with IV's going I managed to flood every time. After all the privacy we have lost with cancer I was able to laugh. My low back pain was severe where the insertion was as well as my lumbar area where I have severe osteoarthritis. Once I got moving today it eased. The titration was started immediately through the external pump with two different drugs infusing. My hydromorphone and methadone and ketamine have been lowered (one through a butterfly subcutaneously and the others orally) and I will be monitored for at least 10 days. A big concern right now is withdrawal with all the narcotics still in my system. Once my doctor is satisfied that all is working, I will go back to the OR and a permanent catheter will be placed along with an embedded pump. This could take weeks but one step at a time. There is hope that next week I can get over to BCCA for chemo. Right now no one wants my blood counts to go down due to chemo. I am so glad to have less pain and the hopes of a permanent solution. Thanks for all your good wishes.
BTW WiFi is iffy so I won't post often unless a miracle takes place.
XXOO Marian
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Glad to see you are having less pain.
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Marian,
Great to hear from you. Thank you for posting at such a challenging time - I know there are many who read - it sounds like you have a great team who have their eyes on all the balls - honestly I am fully supportive of their plan and super impressed at how smoothly this is being run. Well done!!
I send you the biggest of hugs from the Coast and a big whale flip to f...ing BC.
yeah we went whale watching - its the season - whenever I am outdoors I think of your fantastic treks and whenever I am near the sea I think of Di.
You are so gutsy - again thank you for sharing!
Hugs aplenty,
Ioana 🐳🐳🐳🌷🐣🙂
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away from the whales Jojo i you are reading please know that we are thinking you 🙂
hugs, Ioana
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Just checking in on everyone to say hello. I had my scan yesterday. I’ve asked for a call before my 24th September appointment. Lots going on here with university looming which is helping.
I have just returned from a weekend in Edinburgh with my friends. We had amazing food at a Thai tea restaurant over looking the castle and a lunch at a seafood bar. Here are some photos.
Love to all
Liz x
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Woo hoo life is wonderful
Thanks for sharing ...Super sights n great food combined friends family
Cheers Bright in hope
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Great photos and a good time had by all it would appear Liz.
Thanks for the whale photo Ioana. I do feel that I have a good team. Also at the surprise party night at home we saw 2 orcas in the bay below and they fed and breached long enough that we came in. It certainly added to the surprise party in general.
Hello to everyone as fall starts to appear in the northern hemisphere.
XXOO Maria
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Dear dear Liz,
What a meal it must have been - I love Edinburgh ahhh so wish we were there with you!! Enjoy - looks scrumptious.
Maria - how kind of the orcas to show up at your party. I am clumsy with photos but got this one - so from one breach to another
Did the block work - intrathecal catheter ?? How are you? Tell us when you can of you feel like talkin about it.🙂
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Tomorrow is the big day. I have signed the consent and am first on the slate with about 3 hour surgery expected. This is the first intrathecal catheter insertion WITH an embedded pump in almost 3 years so even the staff is excited. I have posted on my blog and will do so post op too. The link is just above my stats or whatever they are called below my comments.
XXOO Maria
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Wishing you well Marian. I’m sure all will go well but I’m in your pocket rooting for you. Hugs. Pat
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All went well and I had half the staples taken out today and my doctor is really pleased. I go home tomorrow after many weeks here but with the necessary trial plus the permanent embedded pump along with lots of care it has taken this long. Chemo starts again tomorrow and I have to come back to have the rest of the staples out Friday and the pump refilled next week so I will be back to cancer busy.
It has been quiet on here and I hope you are all managing OK. Liz how is feeling being retired now school has gone back in?
Time for my last sleep here in the hospice.
XXOO
Mari
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Marian, so glad to hear from you! I’m doing a happy dance for you that the surgery went well and that you are recovering! And your pain is under control! Yay!
I finished the first week of the BYLIEVE clinical trial drugs Alpelisib with Faslodex. Being in a clinical trial has a lot of monitoring, testing and reporting...at least at first. The SE are manageable, the worst being fatigue. So fear this feels doable so fingers crossed that it also does it work to wipe out the nodules on my chest wall.
Sadie, has worked settled down?
Liz, is there life after stopping work?
Be well,
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I am happy for you, Marian!
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Hi All,
As with many, I've been following everyone but not posting much but thought I should check in.
Marian, I was a bit of a stalker on another thread, trying to see how you were faring. So glad that the surgery went well and the recovery seems to have been relatively swift. I know you will be happy to be home.
Ann, good to hear things are underway with the trial. Work continues to be busy. Still full time (🙄 I know, I know). I am on my last couple of hours of being acting ED for a month. My boss is back tomorrow, thank goodness! It has all gone quite well and I held firm on ensuring that I did not work long hours in her absence. A few timelines slipped, not due to me, but overall I kept the wheels on the bus turning.
Home life has also been busy as my “nesting" renovations approach the end of the latest stage. Carpets done, runner up the stairs turned out great, big TV in place with sound system, area rugs cleaned and in place and... very comfy sofa on order, expected in about six to eight weeks. Hooray!
As with all things MBC, the ride has taken me on some twists and turns unfortunately. I started having trouble with numbness and tingling in my right arm in late July. Mentioned it to my MO in late August and he ordered an MRI which he managed to get in record time (they are like gold here). He was concerned about the brachial plexus but it came back clear. Symptoms persisted however (although not as much of the arm going completely to sleep) so GP ordered a CT of my c-spine. (Interestingly, my MO was not copied on the order, thankfully I checked.) Got “the call" from my MO today. Bone mets in my cervical spine and at the base of my skull.
Still processing - it’s a bit too close to an important bit for my liking. Of course it’s important to note that we don’t know if this is progression as it wasn’t previously scanned (bone scans don’t work well for my mets and MO indicated they don’t typically scan the c-spine as it’s rare for it to present there - lucky me!) MO contemplating next steps and plans to confer with my RO. Will report back when I hear more.
Liz, noticed your post about solo travel on another thread. So pleased your are considering it. I certainly understand how challenging it is... my cruise was solo.., but it can be very rewarding.
Hugs to all. Pat.
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