Shadow in chest is recurrence
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Wow, pretty quiet on this thread!
Ann, sorry that SEs are giving you trouble on your treatment. I’ve been watching the Apelisib thread while I contemplate next steps. Seems that treatment is not for the faint of heart!
Still trying to navigate through the latest, waiting for a response from my MO to a whole host of questions. From everything I’ve read, skull base mets are rare. I do have an appointment with my RO on October 11th and will get her thoughts on rads to the c-spine but will also discuss the skull mets while I have her! I think this is also going to push me to part time. I would be crazy not to scale back all things considered.
Di, hope you are well. Please check in soon.
Hugs to all. Pat
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Hi all
I am up early on a Sunday morning and checking in to post update. My scan was a great result and I continue to do well after 2.5 years. Forever conscious of how lucky I have been and I just hope there are more treatment developments ahead.
Was very pleased to hear about a new melanoma drug in the advanced setting that is resulting in 50% survival at 5 years; a dramatic breakthrough from the original, grim prognosis of 6-9 months.
Big changes in home setting. 22nd Sept saw Jack heading off to Bristol uni to study Anatomy. The first step on his plan to be a cardiologist. Bristol is a 3-4 hour drive away and so he plans to be home in November and then at Christmas. My stepson, Cameron is in Leicester, much closer. He lasted 5 days before coming back yesterday and unfortunately this has led to some friction. He has a girlfriend who appears intent on him returning every weekend and then stays over here. Is is wrong of me to expect that Richard and I should be able to kick back a little now and have a quieter house( even temporarily) while these boys concentrate on their studies?
I think my priorities have changed since the stage 4 dx. I like to think I have given all 3 teenSummer of freedom here. They have not washed a pot, we have had their friends over for BBQ and of course girlfriends sleeping over regularly.
Today is very wet. I am a member of the National Trust and quite fancy a walk in a wood to just find some tranquility.
Pat, let us know how you get on with your meeting. The part time work decision is incredibly difficult and so take your time to decide.
Sending all best wishes to everyone on the thread. Thanks for listening.
Liz
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Great to hear from you Liz. It sounds like it’s busy at your household. I had to chuckle about your stepson. They know a good thing! Much better to have someone looking after him! How is your daughter enjoying being the only one at home?
So happy to hear that you continue to do well.
Hugs. Pat.
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Pat, I was so wrapped up in my SE misery from the Alpelisib that I completely missed your post about a progression. Darn! When do you think you’ll hear more information from the MO? I think you mentioned Oct 11 for the RO appointment. Ugh, the waiting is the worst. How are you holding up? Reducing work hours makes sense, your treatment plan may dictate that too.
I’m doing better now that I stopped taking the Alpelisib. I figure I have another week to recover and then we start it again. The fatigue still rolls in and leaves me slower and no energy to do anything. So I figure this week I need to pack some living in....lol, maybe go for some walks and eat some great food while I can taste it.
Liz, it’s funny that now you have an empty nest, one of them wants to come back regularly. You may want to rearrange the house so it doesn’t quite feel like home when they come back, maybe change where you do things! I recall that our kids had a tough time understanding that we had a life, that things didn’t revolve around them, when they left home. They can hardly wait to get out but want everything to stay the same for when they come back.
Be well,
An
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Dear Pat,
We talked so you know my thoughts... waiting to see what your MO makes of these latest scans. Hoping you had a restful long week/end - I know you had a lot of things going on at work in the last few weeks.
Liz,
That sounds like a true adolescent summer vacation - exhausting only when I think of it but hopefully good memories were made and now that autumn is with you a more realistic family plan for you and your husband can be implemented. I do get it - I catch myself a thousand times cleaning after my nine year old!
Marian - I have followed you on other threads - you are brave and strong. Sounds like the pump is doing its job, although yes placement is no easy task.
Pots - I am sorry you are having a hard time on alpelisib - tells why when you can. We dont know each other - I ended on Liz' thread early on and kinda just stayed. I am a heavy stage two, 52 single mother to 9 year old - but live across the street from my parents :;)
We are on school holidays and we are at the beach - its glorious and I love the sea. Yesterday we spotted some black cockatoos - we have lots of white ones - they are protected - the black ones are bigger with a green yellow tail - they are magnificent - clever birds they sat in between branches in the sun - virtually impossible to get a picture of them. I had only seen them once before at Tambourine mountain for a few seconds - yesterday viewing was a full feed.
Di - how are you??
JoJo - are you still reading?
Hugs to all,
Ioana 🐣🙂🌷
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Hi All,
Just a quick update. (Ioana, you know all this.) My MO and I had a great chat to sort out the “what now” part of the story. The tricky thing is, we don’t know if it’s progression as we haven’t scanned there before - bone scans seem to always underestimate the mets for me.
We’re holding steady for now although my MO is once again trying to access either Abemaciclib or Ribociclib. (I was turned down for Abemaciclib about a month ago.) Interesting about the Ribo, I had dismissed it as I felt it was too similar to Ibrance which caused significant problems with anemia in me. My MO indicated that is not necessarily the case and, according to Bestbird’s latest posts, it appears to be a pretty strong contender in terms of beating things back. Anyway, we will scan again in three months and if it is progression I will move to chemo - not sure what or for how long. One day at a time!
To be honest, my gut says progression but then, my gut has proven to be alarmingly inaccurate. 😏
Ann, I hope the Alpelisib gets a bit easier.
Hugs to all. Pat.
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Happy Friday everyone (well, Saturday for some).
It's been a busy week. I didn't think it would happen so quickly but I Eli Lilly contacted me yesterday to indicate that I have been approved for Verzenio (Abemaciclib). It's great news... although I have to admit to being a bit nervous. The side effects are harsh. And, interestingly, my MO has asked for 200 mg twice daily, the monotherapy dose, despite the fact that I am continuing on with Faslodex. I suspect he is worried that the latest is, in fact progression. I'm coming to the same conclusion as my symptoms seem to be evolving. (Lower back unhappy and hip pain increasing plus additional head/neck symptoms.)
My appointment with my RO has been pushed off until the 16th as I also found out yesterday that I have a brain CT scan scheduled for October 12th (which was the day following my original RO appointment). She'll need that scan to provide a solid plan for radiation should it come to that. Trying not to let myself get freaked out about it but it's challenging.
I have a few days to gird my loins for what is to come. I'll receive the drugs on Monday (along with a supply of Imodium... what does that tell you???) but flipped a note to my MO re: timing the start as I know he needs to get a few things organized including baseline blood tests. He wants me to hold off until midweek. So... I can enjoy wine for a few more days!
Hope you are all well. Post when you can. Hugs. Pat
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Hi Pat,
Sending you warm hugs. It is daunting starting a new drug....mainly b/c we read and or are told the SE and have no idea whether we will have those SE, or something different. All you can do is try it out, if the SE are hard to manage then a dose reduction is always an option. But they don’t know how you will respond until you are into it. These drugs we are getting are so still new. Yes the approach often now is to combine a targeted therapy with an AI, the results are promising and kick the cancer cells with a double punch.
Hearing that you may have a progression is tough, I’ve had 2 in 2 years and I can tell you this news left me a bit shattered and numb at first. It is what it is, you have a treatment plan and a way forward.
Much like you, this is my last weekend before starting up again on the alpelisib and getting another Faslodex shot. I’m planning to enjoy several glasses of wine, eat good food (while I can still taste it) and enjoy the energy I have now.
Be well,
An
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Thanks An,
I know exactly what you mean about progression. I was supposed to do great given the long period between original diagnosis and stage IV but then, I had early progression and struggled to find a treatment that worked. That shook me for a long time.
Fast forward almost two years and I started to feel invincible again. Uh,,, apparently no. Although, as I have said, it’s a bit unclear. This has been a running theme with me. Tumour markers seem useless. Bone scans? Ditto. And with predominantly sclerotic bone mets (on top of the chronic pleural effusion), it is damn difficult to be absolutely sure what is going on with me. I feel for my MO as this is a case where it is more art than science.
But... determined to enjoy the next couple of days and feel Verzenio will knock it back. I have my Faslodex pokes on Tuesday so “feel your pain”. Hope Alpelisib is kinder this time.
Until then... cheers! 🍷
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Hi Pat,
I wish you all the best with Verzenio. Great you got approved and praying you tolerate it well.
Will PM you. Started a post and then it vanished?
L x
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It was quiet for awhile but it has been busy since I last posted, sadly not all good news. Liz, I was happy to see your good news though! Dutchiris (Sharon) thank you for your thoughts. The rest of you will not know how we know each other but we actually met in person quite a few years when neither of us were MBC. I was visiting friends in Wisconsin just across the border from Minnesota where Sharon lived. She saw that I was going to there and connected and we met for tea.
What I am trying to do now is read about each of you and respond but it may be in more than one post as I am exhausted from my recent ordeal which I will explain later.
Pat, when I started reading your post from September 19, I saw brachial plexus first then the Mets to spine and base of skull. That must have been tough to take in and ongoing as you see the RO this week. If any chance our appointments are within time range, I have an appointment also at BCCA on the 11th at 3:30. Whoa, reading on, I see that you got Verzenio approved and start this week, while waiting for more scans and information. One positive I see is that things are moving rather that a crazy long waiting game.
I am tired and will let you know my latest and respond later to all of you I think about. Pat, I saw that you found me elsewhere. Really recently I closed several threads as it was getting me down so now the only threads I am on are this one, British Columbia and a couple
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My iPad went wonky and was backing up deleting so sent. The other couple were 2012 threads that are rarely posted on but we were a tight group so keep it up.
So my latest was the worst ever and this recovery both physically and emotionally not to mention my memory regressed. Anyway, I had my first ever headache that evolved into nausea and vomiting and because weekend was coming I was told to go to ER if it continued and it did. My husband had a hard time getting me to go last Saturday because I was so afraid to get in the car because I knew it would be bad~~lucky we are not far from the Royal Jubilee! Once we checked in I lay on the hard chairs as lying down was better and it did not take long for a stretcher. First CT of the brain looking for mets was negative but showed a subdural hematoma. Back for CT of spine and diagnosis was cerebrospinal leaks. Fast forward 3 nights in ER though second 2 were in a smaller area. Blood patch was needed but it took until Wednesday and by then I was so disoriented that I shudder still. Blood transfusion, potassium IV etc. and finally got the patch which means about 10 cc of my own blood was inserted into my spine helped by a fluoroscopic X-ray machine and within minutes my headache was gone. Nice but crazy that I had to wait 5 days. I am home and very tired and weak and mostly on bedrest to make sure the leaks don't recur which is possible.Good news to is that the pain is almost gone due to the intrathecal pump even if the leaks were due to one of the surgeries. One more awesome bit of news is that my PET scan is finally scheduled for the 17th and Pat is right, scan appointments take time though in ER it is fast haha!
Back to reading and responding tomorrow.
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Marian,
I'm so sorry to hear about what you have been going through. It sounds horrendous and, to be honest, I don't quite understand what happened although I take it that it was something from your surgery. If it was lack of cerebrospinal fluid, I do have some experience with that.
When I was first diagnosed I ended up in the hospital with a second blood infection at the end of chemo. While I had some improvement with IV antibiotics I was not bouncing back as would be expected given my age (quite frankly I think I was just completely beaten up from the CEF which is pretty harsh). A decision was made to check my spinal fluid. The GP at the Cancer Agency wasn't able to successfully tap the spine so they sent me to fluoroscopy. There was a discussion about how much fluid they needed and the physician decided to take a “bit extra", just in case.
Well, I ended up with the worst headache of my life. I couldn't sit upright for more than a minute before it would start pounding. We're talking a serious blinder! To add to the story, I was released from the hospital on Christmas morning. I ate Xmas dinner lying on my back on the couch given that every time I sat up my brain would crash into my skull again! Eek. It took a week before the fluid levels came back enough for me to function. All to say, I get it!
Doing okay, dealing with my own headaches (nowhere near as bad) due to the neck issues and trying to think through prep for what may come with Verzenio. As you saw from subsequent posts, my RO appointment has shifted but hope your appointment goes well on the 11th.
Liz, lovely to hear from you.
Wishing you all well. Please check in when you can.
Hugs. Pat.
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Pat, where was the fluoroscopy machine? Wanting to know to find out before I have an appt. Tuesday at the Pain Clinic in the building across from the parkade. If there is another one I want to know why it was not done before Wed. as it is what I was told. I got a whole lot sicker waiting. The leak/leaks were caused by one of the surgeries and I did have a very slight headache post op second one which they knew about. It took awhile to get worse and cause crazy nausea and vomiting. It is reasonably common with any spinal surgery. I am determined if it happens again to wait out until a weekday when I can go into the pain clinic and stay until it is fixed. Mind you I did vomit majorly in the pain clinic when I was getting my staples out. Caffeine helps but I went off coffee and tea though I did try coke. Ah, the circles we go through! Can you take anything that helps your headaches from the neck issues. Also have you gone half time yet or more? I hope so!
Ann how did it go this last week? Glad to hear about the wine. I asked the doc about alcohol post op and he said yes. Sadly it all tastes awful so I envy you. If I do improve I know my friend's in Vancouver is happy for it to happen.
Has anyone heard from Di?
Ioana, I need to send you a photo of one year old twin Ioana, the only other Ioana I have ever known.
M
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Marian,
I was so sorry to hear about the dreadful headache you have had.Thank goodness the pain has now virtually gone, but understandably you will be exhausted and recovering emotionally will be very hard. Take your time. It is difficult to keep track of everyone on the thread.
Sending love
Liz
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Marian,
It seems you can't catch a breake lately but I hope the pump is still giving you some relief. It's good to see you posting again but be sure to take the time you need for yourself.
I am honored that you shared the story of how we know each other just as I was honored you invited me for tea.
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Hi Marian,
I’ll be quick as I need to get ready for work. My experience with the spinal tap was on 2001 so not relevant to your situation. Sorry if I wasn’t clear. I always use the term “originally diagnosed” for my initial stage 2 diagnosis.
Hope your appointments go well.
Pat.
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Pat, me not you~~my brain is functioning very poorly and of course it was long ago! I also hope your appointments and week go as well as possible. Sharon, let's hope we meet again. We went sailing on out Wisconsin friends catamaran in Feb. in the Bahamas and hope to visit them again at some point so we could see each other again! How are you?
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Good morning everyone,
Marian, I am reading about your ER experience and it sounds so scary. How are you doing now?
I'm sorry I haven't caught up with others and haven't posted so much. My energy levels have been quite low, and I've had to be deliberate in how I spend my time - husband and daughter, close friends, laundry and dishes when I can. It's a much smaller orbit than it used to be. Grocery shopping can wipe me out for a day.
My CA 125 markers have increased dramatically, and I've got surgery next week to take out my ovaries. Immunotherapy is ongoing. Scans in two weeks. I'm so tired. I'm mostly writing on my blog these days. One day at a time.
Wishing you all strength and healing going forward.
Love out,
Jojo
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Jojo, I was so happy to see you here though I totally get why you are conserving your energy for the most important and often precious times. Ovaries gone I hope helps too along with ongoing immunotherapy. I did click the correct buttons and email to follow you on your blog and read back yesterday too. As always, your writing moves me.
I get better every day and losing the majority of the pain will make such a difference once I get back energy. I saw the pain pump doctor on Tuesday and gave him grief over having to wait 5 days while getting sicker and sicker for the blood patch and he tried unsuccessfully to blame my low Hg (77) need for a blood transfusion, etc. on chemo. He did back off in the end since I have had only 3 sessions of chemo in 3 months. My husband thought I was unfair as he "saved my life." Yes, to pain but neither of them lay there for days finally becoming delirious and losing dignity.
Day by day I am leaving more behind. I saw my MO yesterday and we decided against chemo again this week and I had blood work done to see where my counts are now. I will have another blood transfusion if necessary before next chemo. I have my PET scan on the 17th and she will call me possibly by the 19th with the results and says then we can make a plan, possibly for a new biopsy and Foundation testing.
Pat I know your brain CT is Saturday and will be thinking of you and hoping for quick results.
XXOO Marian
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Marian, i’m So glad to hear you are finding your old self again and leaving the pain and misery behind.
My system seems to have settled down a bit to clinical trial drug alpelisib. I’m finding this drug has way more heavy fatigue than either the Ibrance or the Taxol. I also get more nausea and diarrhea...oh joy.
Jojo, I think the treatments take a toll on our body and on our minds. I too have pulled back, I don’t have the energy to be politely sociable any more....I’m trying to focus my energy on what matters. Family, pottery, close friends and me. I hired a cleaning lady to come very 3 weeks.
Pat, any news on the scan results? Would you be able to join us in Vancouver for a BCO lunch Nov 23?
Be well,
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Hi Ann,
Glad to hear your body is starting to adjust to the drug. Hoping mine will also get used to the latest onslaught.
Sorry to have been slow to post. There’s been a lot going on here. Scan, thankfully, did not show anything more than the bone mets we already knew about. My RO was fabulous, spending quite a bit of time with me to discuss options, walking me through the CT which I found very helpful. Ultimately we. did not feel the neck issues would be resolved by radiation - more likely this is arthritic degeneration. (I could see on the scan that there were no tumors causing narrowing.)
However she does feel that I am having some impact from the bone skull mets. There is a large area of metastatic growth on a bone called the clivis. I’m having intermittent numbness of my chin/cheek which is likely due to this. But, I’ve decided to take a wait and see approach while we see what the Verzenio does. If my symptoms worsen she can get me in for rads very quickly. (Not entirely sure my MO is as comfortable based on his last email.)
Beyond that, trying to get a handle on Verzenio. So far it has been relatively kind to me. Not too much diarrhea and I’m now at a point where I’m going to see what happens if I don’t take loperamide. Having some trouble with hydration even though I have not been troubled by a lot of diarrhea - the Verzenio seems to be very drying.
By far the biggest issue for me is that I have no sense of taste. Everything tastes awful and makes me slightly nauseous. I have zero appetite - no interest in food. It’s depressing really. Even chemo didn’t leave me feeling so disinterested in food - such a big part of life’s pleasure for me. Hopefully the cold I managed to get is making it worse.
And then, to add to the stress, my mother fell the other night. Pitched forward trying to pick a piece of lint off the carpet landing on her face. Required a trip to emergency and stitches - lots of blood. She’s more or less okay - pretty sore still and she looks like she was in a brawl. And Sadie has been on limited walks to try to deal with a paw issue. I miss the long walks - feel like a slug
That’s the full report. Hope you are all keeping well. Hugs. Pat.
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Oh Pat and your poor mom. Recall her falling on the lawn but did she not also have a fall inside, also requiring an ER visit? A new word, clivis. Glad you had a thorough visit with your OR and will you see your MO soon for followup too? Does Verzenio cause the lack of taste. I almost stopped eating and my chemo may cause some of that but also my week in hospital left me not wanting to eat. It is depressing as you say and not good to not want to eat.
I did start chemo again yesterday and we hope I can actually get through a 3 week cycle, not ever done on this drug. So for the good news~~I got my PET/CT results yesterday and "there is not a lot of activity" and nothing new was seen in the brachial plexus. I don't have the report in hand but it sounds good. The plan is to continue chemo (Gemcitabine) until the end of December, do a scan in January and start Tamoxifen. There was nothing to tell us why the pain ramped up so it is anybody's guess, possibly radiation scar tissue messing with the nerves. So I have little pain with my pain pump embedded and the idea of "just tamoxifen" sounds appealing. Have any of you taken Tamoxifen, pre or post menopause?
I have to say that our fall has been decent and even when it rains it seems never to be non-stop.
XXOO Marian
I keep hoping to see Di and was happy to hear from Jo and continue to check her most beautifully written blog, despite the sadness. Lix how goes retirement?
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Hi Marian
Really hope you can stay on the chemo through Dec.
I need to read back on the thread a bit to catch up but for now here is where I currently am on a lovely break in North Yorkshire.
Take care everyone x
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Liz, it is lovely and restful looking too. Who went with you or was it solo?
Pat, though you did write on Oct. 19th, there was certainly a lot going on with you, your mom and Sadie. Please let us know how the last few weeks have gone. I have not heard of the cloves bone and will look it up. Having no taste does not sound good and along with that plus nausea, your weight will go down, not a good time for that.
Please give us an update when you can.Jojo, it was nice to see your brief post and I got your last blog post. I think of you so often.
I got through the cycle of Gemcitabine but the following several days were awful with more fatigue than I have ever had. Start my last cycle tomorrow I hope. I saw an oncology GP today and she was a little confused but agreed that she had heard I will be stopping chemo. I told her I hoped to see my MO in December so we can discuss further what we talked about on the phone after my CT/PET. My pain pump is working well and we went down 5% of my doe last fill.
I hope to hear more from everyone in the near future.
Marian
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Hi All,
There has been a lot going on for me of late. I know I haven’t been posting much and just realized I owe you an answer to a PM Liz! So sorry!
To catch everyone up, my oncologist stopped the Verzenio after the first two week cycle due to the nausea. I was off two weeks until it was agreed that I would start again at a lower dose (200 mg to 150 mg twice per day). I felt it was better - lack of taste has been slower to disappear - but unfortunately, at day 7, the nausea is rearing its head. My MO wants me to go down to 200 mg once per day if nausea is an issue but I have mixed feelings. Some have indicated that things improve after a couple of months. Not sure exactly what to do....
I may hold steady on this dose until the completion 14 days at which point I will have bloodwork. I was astounded to see that, after two weeks off the med, my blood counts including hemoglobin were below normal. If this continues the decision on lowering dose may no longer be mine. Will let you all know.
Beyond that, house, garden, Sadie and mom are keeping me busy given my reduced energy levels. Plus, still monitoring the jaw/face as I’m not sure if I can wait until January to make a decision on radiation.
Marian, glad to hear the pain pump is working and here’s to finishing with gemcitabine soon!
Hugs to all!
Pat
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oh... and Ioana, you are in my thoughts constantly of late. Hoping the fires are not impacting you.
Big hug. Pat
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Another quiet time here. I get Jojo's blog posts automatically as can all of us. I got one tonight which is what led me here. She is having a rough time yet still continues to write with her usual passion. The have put up their Christmas tree and she posted a lovely photo of it.
As for me, my awful fatigue and low blood counts have not quite stopped me though close. I flew on a seaplane to Vancouver last weekend for a BC BC get-together lunch and Ann (Pots) picked me up on the Fraser River. Meeting cancer friends is the best. I posted on my blog last night so if you are interested in more detail, the link is just below this and at the top of my stats.
Marian
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Still very quiet and I hope that you, my friends are doing OK and spending time with family and friends in the coming days. Merry Christmas.
Love Marian
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Marian, it's good to hear from you. I'm doing well. Mery Christmas to you!
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