Shadow in chest is recurrence
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Hi All,
Just a quick update. Met with my RO and she’s recommending a series of five daily treatments of the mets at the base of my skull and top of my c-spine. Surprisingly, she does not recommend zapping the mets on my right occipital bone - I think the potential for collateral damage is high. Planning CT will likely take place sometime next week and then radiation starts about three days later. (I had to laugh. She said she could do something quick or could take a fancier approach to planning which will provide a more accurate, directed beam. Um.... I’m good with fancy. Rather avoid a shot gun approach!)
I have to admit that I am nervous. The list of potential side effects is dauntingly long and a bit scary. There are a whole host of potential “short term” impacts that can last for a couple of months including a sore throat (couple of weeks), pain flare for a few days, fluid in my ears, sinus drainage which requires irrigation, hair loss (possibly permanent) and fatigue to the point that apparently I might nod off in the middle of a meeting if I’m not actively engaged. That should prove interesting. The most worrisome to me is potential reduction in my short term memory capabilities as there is no way to avoid radiating the brain to some extent. She does feel my age and concerted effort to use my brain (mind puzzles here we go) is in my favour.
So, there we are. Sometimes it all seems surreal to be in a place to have to make decisions about such impactful treatments. On the one hand, things seem to be holding steady but on the other hand there is clearly something going on with my skull mets. Things are quickly going downhill again now that the steroid is reduced in dosage. Pretty sure things will be back to where I was at a few weeks ago so not sure I really have a choice. Let’s hope that daunting list is just speculation.
Wish me luck!
Pat
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Hi Marian, glad you were able to update us in spite of the challenges. Yes, I am on Taxol. The icing I'm doing is really keeping the neuropathy at bay so I'm not sure how long my MO will keep me on it. She said originally until the neuropathy gets too bad but it's not getting bad. I'm knitting a silly little diamond pattern on small dpns & my dexteritiy is fine. My nails and fingertips feel a bit bruised but no loss of function. (helping my dd with a project she embarked on - one of thsoe crazy patchwork pieces where you make a bunch of little things and then stitch them together, to either make a blanket or lap blanket or a cat bed...depending on how quickly you run out of steam on making the little pieces lol)
I think it's *because* I can't taste things that I'm gaining weight - I keep craving things and nothing satisfies so I just eat, and eat some more in some hope that something will satisfy. Towards the end of a 28 day cycle, somewhere around day 23, I have sometimes tasted stuff and that's been nice.
Enjoy your chemo break! And all the wedding prep! How exciting and magical. It all sounds like a lot of fun! Enjoy yourselves (take your walks but also take your rest breaks and naps!)
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Pat, ugh, yikes, that does sound scary. It sounds like the RO has a great plan though. The side effects - well, let's hope they skip you by. We just never know when we go in how it will all turn out. The headaches sound so awful & being on dex for any length of time sucks so this definitely sounds like the only sensible solution...but anything near brain stuff is scary, isn't it? Your clever, active brain has already, I'm sure, built in lots of workarounds so it's reasonable to hope you'll bounce back good as new.
hugs
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Hi All,
Thought I would provide a quick update on my situation. I had the CT planning last week which included being fitted for a mask. It's fascinating how plastic has revolutionized medicine. They had me on the scanning table and put a warm plastic sheet over me (at the time I couldn't tell that it was slotted - I did wonder how I was breathing so well!) which the pulled taught over my face. That was allowed to harden and they marked the areas to cut out for my eyes and mouth. All very cool and grateful that it will allow for more precise zapping. I have my first radiation treatment on November 3rd. Don't have the other appointments yet but the RO had indicated five days in a row (I assume there will be a break over the weekend).
In the meantime, I took advantage of the fact that I was at the Cancer Agency to drop forms off for my MO to fill out. I know most of you will say it's about time but I have finally reached the place where I feel that it is best if I reduce my hours on a more or less permanent basis. The timing was good as I had a follow up call with my MO yesterday so could chat about this request. He is very supportive and filled out the form (albeit incorrectly but my HR department can reach out to him if they have an issue) that afternoon. So now going down to four, shorter days per week - Fridays off. It's going to be a radical change for me that I am trying to wrap my head around but I'm sure I will appreciate it once things settle into a routine. The day off is going to be relatively easy to implement but the shorter days are going to take some work, particularly right now as I'm try to sort through the headache issues and will have recovery from radiation to contend with, all of which complicates the plot somewhat.
I had a good call with my MO. It's interesting with this disease as all the scans point to stable but my MO is also convinced there is some progression in the bones that has resulted in these headaches (which continue to worsen now that I am close to being off the steroid - thank goodness - insomnia is a killer). I would concur as all the hotspots in my bones (right hip, right ribs, lumbar spine and neck/head) have been acting up over the last few months. However, in the grand scheme of things, neither of us want to move off of the Faslodex/Verzenio combo that I am on unless things seriously go off the rails. He will scan again (both bone and CT) in three months time.
That's it for me. I hope you are all doing well. Marian, check in when you can.
Cheers. Pat
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Wow Pat, thanks for giving us an update on your radiation prep. It continues to amaze me how technology has improved the quality of our treatments. Please keep us updated on your RO treatments.
I’m doing a happy dance that you are putting in “the paperwork”! Yay! Shorter hours will get easier to do once you’ve done it for a few weeks. It just becomes a fact...your start and quitting time won’t align with others expectations...too bad for them.
My next CT scan is on a Thursday and I see MO on Nov 12. Scanxiety is setting in....sigh. I’m preparing myself for mixed results. The alpelisib is probably holding abdominal lining tumours stable however the new lung nodules may be acting out...my TM are going up month to month. Lol, I’m a Gemini and mercury is retrograde so bad things/ changes happen now.....not that I’m into astrology. Stay tuned.
Stay wel
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Thanks Ann. I'm pretty sure I'll get the hang of the reduced hours fairly quickly.
I know having Friday off will be very helpful for recovering my energy and managing my life. Just have a weekday to deal with "life" is an amazing concept. There is so much that needs to be done Monday to Friday still which has always created challenges. Now I just have to deal with the paperwork which was only partially completed. Doctors just don't follow instructions! LOL.Do you have ILC? You mention abdominal lining and I know ILC tends to be sneaky, favoring membranes. Sending positive thoughts for your CT. Really hopeful the alpelisib is holding everything in line! Hugs. Pat
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Hi guys,
Ann - in your pocket for your scan and good results!Pat - I suspect you'll love your long weekends and get used to them quickly! The shorter work day might be weird depending on your job. My dh is in a job where if he takes time off and comes back there's just more of it piled up. I'm sure it will be a transition for everyone to get a new routine and groove.
My scan results were...mixed
My liver mets are continuing to shrink but my lung met (which we all thought was fully necrotic and has been a shrinking mass; last Feb we couldn't get a live cell sample for a biopsy from it) - well, it grew. Overall I'm still considered stable because the total tumor volume is still within whatever the RECIST criteria are for "stable" but my MO is really unhappy about that Zombie lung met. Today I found out that I can come off the trial and still keep getting the atezolizumab immunotherapy through a compassionate access program from Roche. This means I can now also get other treatments. Under the trial, they weren't allowing many other things. I've been referred to radiology for a possible SABR trial. And the MO might switch me off taxol and onto abraxane which is supposed to work better with atezo than taxol. So some good, some bad, some new stuff on the horizon.
Interventional radiology has also reviewed my scans and thinks they can get a sample so we will try a biopsy again, just in case this sucker is not triple negative. They will also try to get enough samples to send for genomic testing.0 -
Moth it certainly sounds as though you are getting good treatment at the Vancouver BCCA~~ at least your MO says like she is doing everything she can.
Ann, I will be thinking of you also on Thursday and hope that you will get your results in short order.
Pat, did you have your first four-day week last week? From what I have read you have so much on your plate and I hope that the plans with your MO and radiation team get it together to make your life a lot easier and rid you of those headaches.
Elderberry, thanks for the info on your Avatar. I love the story and wish I had been around or noticed when that was happening. The fact that your name is a healing plant is very cool too.
As for me, I am awaiting ultrasound results from 10 days or so ago. My voice turned hoarse several weeks ago and I mentioned it at chemo nearly 3 weeks ago and my MO was quick to order the US but no so fast at getting results to me. My thyroid left lobe lit up in the PET/CT in September along with other progressions. She is calling me tomorrow pre-chemo so I will find out more then. The wedding came together and with Dr. Henry's latest edict we were good. Nine of us in total and it was really fun. I was in charge of the photographer amongst other things and in the end we had a miscommunication about a photo shoot at Ross Bay cemetery and she thought we were doing the ceremony first but nevertheless it was always 3:30 to 5:30. I was the only one stressed and we were only about half an hour late for the ceremony at our house. That extended it further though when the bride's son Parker went trick-or-treating longer than he was supposed to. To be honest the light was way better the way it turned out anyway and all of those waiting for zoom to start up were very patient. I was so proud of my son Andy and his bride Kara. Both of her parents have died and there was some sadness around that but our family rallied around including our son Steven and partner Heidi who are in Australia. Saturday was a beautiful afternoon and evening and the wedding took place on our deck overlooking the ocean. I just tried to add a couple of photos but the Internet is not cooperating so I will add them later. It was a very special event for me and as Andy wiped away Kara's tears during the ceremony, I had my own tears too.
XXOO Marian
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Hello everyone
It has been the longest time since I have posted. Long overdue an update.
Treatment- I continue on subcutaneous Herceptin shot every 4 weeks. When Covid hit in March 2020 I dropped Perjeta and switched to Herceptin only. All subsequent scans have shown stable disease so it appears scaling down treatment has not been detrimental, however I appreciate this is a risk and of course a personal choice. In March 2020 I reached 4 years post stage 4 on the first line of tx still. It is a huge achievement and o acknowledge that every single day.
Hormones- I had been on Letrozole for 2.5 years ( starting in October 2017) This was in conjunction with a monthly Zoladex injection to enforce menopause. The Letrozole contributed to arthritis issues unfortunately; exacerbated by fluctuations in my weight. I have arthritis in my knees and feet. Decided to drop Letrozole. As you can see I have adopted quite a risky strategy here but as I said before it is a personal decision and we all have to live our lives based upon what works for us at the time. I could have gone for ovarian surgery and then stayed on Letrozole but this was not my choice. At 51 now you might think that my ovaries would have given up but unfortunately not. I have super charged versions and a period happened recently. For now my Dr and I are watching the situation to see what the next step. As I am Er positive it needs careful planning.
Day to day- I retired from teaching in May 2019. I am glad that I did but financially it has been hard. My son is at medical school. Luckily my family have helped me a little and he know has a job as a cocktail waiter in a bar in Bristol. Jack has just completed his second year. My daughter, Lucy works in a law firm as an apprentice para legal. She doesn’t love it and talks about becoming a dog groomer. I’ve been married to Richard now for 7 years, following a dreadful first marriage. I am happy and content, barring the ‘ shoe to drop’ constant backdrop and my aches.
This Summer- I go to Cornwall in June and if I can sort my achy back, hope to cycle and swim. Having a change of scene from home is going to be wonderful and will be hitting the beaches and taking in the views a plenty.
Please PM me or post on here to just say hello as I work through catching up.
Best to all,
Liz x0 -
Greetings Jackaboo from downunder
Great to hear about your family progress and your health progress
We are now enjoying the chilly cooler weather have managed to do some short trips within NSW but not interstate
Pic of a nearby hike with relatives visiting last week Bouddi national park north of Sydney
I feel very lucky to be still stable with lung mets and now able to access kisquali on the pbs
All the best with holiday
cheers
Bright in hope
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Jackboo: did your last scan still show NEAD? I was planning a trip to the UK last summer to celebrate my 70th birthday. Covid derailed that. Last time I was in the UK was 2012 and I felt I was overdue for another visit. Cornwall is a lovely part of England. It really is a "green and pleasant land"
I am so grateful to all the ladies who post on all those threads. I feel less alone and I get hope and inspiration.
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I'm glad to see some activity again on this board.
I'm doing well, into month 21 on Alpelisib which is pretty amazing considering how difficult this drug can be. Latest drama, I thought I might be losing my fingernails but it seems like now they are staying on and regrowing. Next scans are early July so until I get news that things are changing, trying to focus on here and now. I’m Waiting for my second covid shot mid-June, yay! I'm booking some travel within Canada to see my new grandson in mid-July. During Covid I redid our front yard landscaping, now in year 2, I'm working on the backyard....being in the garden is keeping me somewhat sane.
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Hi All,
It is good to see some activity on this thread but a bit sad as our little group has gotten smaller. So much has happened since the last time I posted here that it is difficult to know where to begin!
I continue to manage fairly well although January saw confirmation of progression to my liver. That meant a switch from Faslodex/Verzenio to Xeloda. I’m currently waiting to hear back on scan results after completing my sixth cycle. The scan midway showed a good response with shrinkage of the liver lesions. I’m a bit nervous about this scan though as I haven’t been feeling great and have experienced an increase in right flank discomfort. But it’s often so hard to tease out the impact of the cancer from the side effects of treatment so I remain hopeful. MO appointment Tuesday at which point I will hear what’s next as he doesn’t want me to continue on this drug regardless. (I believe he wants to move to Exemestane despite feeling I am now hormone resistant.)
I had a ctDNA test in April which unfortunately didn’t show anything actionable. I had hoped it would demonstrate the PIK3CA mutation which would open up access to alpelisib. I may push for a solid tumour biopsy if things are going sideways although I would still need to jump through the hoops with my health insurer and/or Novartis.
On the work front I was approved for LTD so am now working a three day week more or less. The nice thing is that I have flexibility so cam change my days off depending on my needs and can increase my time off if necessary. The transition to full LTD should also be fairly seamless as well thankfully. The downside is there is a lot of bureaucracy, particularly as I don’t fit the mold in terms of my current status which is referred as rehabilitation. Uhm..... not going to get “better”... but it is manageable. In the meantime, I appreciate having more space to stay on top of the day to day, including tending my large and unruly garden!
Shot #2 of COVID vaccine scheduled for June 23rd! Can’t wait although I’m not quite sure how much protection it affords given the delay between the first and second dose. Suspect a booster will be suggested.
Sending hugs to all. Pat
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Hi Pat
How are you doing now? It was a few weeks ago that you posted as I write this. Glad to see you are easing up on work and enjoying your garden. My mum loves a wild garden.
I am currently in Cornwall. Enjoying the beautiful weather, wildlife and walks. My last scan was March and unchanged. Next one is Sept.
Sending love and my very best wishes to you.
L x0 -
Hi Liz and others,
Sorry I didn't provide an update. This thread is so quiet of late.
So, met with my MO and the news was good. I had a profound response to the Xeloda with one liver lesion completely resolved and the other showing significant reduction. As I mentioned, my MO had already flagged that he wanted me to stop at six cycles but shockingly, he has suggested I go off treatment for awhile. This took me completely by surprise as you can imagine.
After processing I had a follow up chat with him to better understand his rationale. He explained that, while here they do keep some patients on a low dose of Xeloda long term, he didn’t feel it was appropriate in my case. His concern is toxicity to the bone marrow. At that point the penny dropped for me. My red blood cells have struggled ever since Ibrance, staying on the low side of normal and then dipping with targeted therapy and chemo. We also don’t think endocrine treatment will do any good as I am likely resistant at this point. Better to hold off on the Exemestane just in case we want to try it with Afinitor down the road.
Th other news is he is going on sabbatical for six months starting in August. He’ll be in town if I need him but I’ll be seeing someone else in the interim. Bit nervous about that but I’m sure it will be fine.
This may, of course, impact my plans regarding work. No treatment means no side effects which is the bulk of what I have been dealing with. For now I am continuing on my reduced hours. Not sure if the insurance company will try to push me back to full time. We’ll see.
Other than that, lots going on for me at home. Mom is struggling with her own health issues which not surprisingly has a way of trickling down to me. Feeling pretty stretched and tired to be honest. And then, to add to things, we had a crazy hot spell here. I spent four nights sleeping on a love seat on our main floor as Sadie couldn’t tolerate the temperature upstairs. Even then she had me up in the middle of the night pacing and panting. My old house is not set up to deal with 39 degrees…
Hope you are all well. Sending hugs.
Pat
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