Shadow in chest is recurrence
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Thanks for this. I recall someone mentioning the 5 days on and 2 days off protocol. Interesting hypothesis. Someone else on this site who had bilateral MPE is taking it 3 weeks on and then 2 weeks off alternating with 3 weeks on and 1 week off. It does seem more than a coincidence that the 28 day cycle mirrors chemotherapy which is, of course, aligned to link to cell division cycles. If I understand this correctly, th action of palbociclib is unrelated to the cell cycle so this regiment makes less sense. There have also been discussions on dosage with the understanding that Pfizer focused on the maximum tolerable dosage versus efficacy.
It's fascinating being in the middle of figuring out how big pharma works. I will also be interested to see how the release of the sister drugs impacts price. I suspect my health plan won't have to shell out $450 per pill for much longer.
Interesting thought on Hb. I am likely making assumptions based on the fact that my Hb has steadily and consistently declined (along with my RBC) since starting Ibrance. Before that (approx. 4 months) my Hb held steady. Of course the impact of the infection? That's outside of my ability to speculate.
Always enjoy our chats. Thanks for getting me up to date on the latest!
😉 Cheers. Pat
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Liz, meant to say, we are all in your corner with that scan. I'm going for positive news. Sending all the good vibes I have your way!
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Hi Liz, Pat and Iaona - Sorry to be so quiet, I had my 2nd round of Abraxane yesterday. Good news is my calcium numbers are now back to normal - but we will watch them carefully - I needed an emergency Xgeva shot last week. My onc wants me to go 9 rounds (3 weeks on, one week off) and then scan, and do another 9 rounds if I am responding. Sounds like a "booby" prize, but I am hoping this med kicks cancer to the curb. I am using cold caps to keep my hair, so after the 2 hour session, they stay on another 2 hours. brrrr but so far, no hair loss. Liz- rooting for a good scan! I am working from home for the next few months to watch fatigue, driving, etc. I have some lovely flowers from work.:) Last week was awful, the pain was really bad and I vomited coffee the day I started my IV meds. ugh This week, I may have turned a corner. Bone pain is decreasing. How are other ladies doing? It's a sunny day here.
(()) Your girl in LA
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Pat- thank you for your good wishes for the scan. You all hold my head above water during good and bad times. I am so pleased that you no longer have the catheter to deal with and are starting to think about travelling! Also the infection you had- glad it is resolved. You have had a crap time and deserve some light at the end of the tunnel time now.
Claire- I felt very emotional reading your post. Your strength is incredible. Awful to hear about your pain and sickness. Was it the pre tx meds that made you sick? Was it really 4 hours of cold cap? I can't take it in how tough you have been. Just glad to hear you have turned that corner!
Ioana- you help us all with navigating through the medical uncertainties and the emotional difficulties. I hope you remember to take care of yourself.
Tonight our boys are nervously awaiting their exams results which are available at 8 am tomorrow. Will let you know.
My brother gets married in January. At first I thought that there had been a typing error... January on the Welsh coast. Brrrr.... ❄️❄️❄️
We have been talking about it tonight and there are a few concerns about getting there and where to stay. I must be changing my mindset because in recent weeks I just tend to shrug my shoulders when I meet problems. I think it's healthy to try to solve issues but equally it works for me if I just say" I'll deal with it then.....
Will chat again soon friends. Hugs
L
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Claire
from a hike in the rugged wilderness of the Carpathians.
(())
Ioana
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Ok - some many years back....😉
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Liz,
This is something I struggle with, albeit in a different arena.
A while back a friend who went though a complex divorce was told " do not give him your oxygen"
( it seemed also good advice for complex families where let's be honest in the majority of cases women shoulder much of the work/ responsability)
I came across it again when I needed to be interviewed in court - not my case. My good man lawyer (there are some ) said just answer all questions with YES or NO if you can - not more. And keep your demeanour demure. That was a tough one...
Finally I add my Let it go from the movie - I love that song.
I take my HAT off to ALL women who manage to find and enjoy good relationship with men. I could not - six month in one house is my max. I find them wildly stupid to be honest. NOT that I think I am clever - I am probably NOT clever enough but even the ones with lots of letters after their name go to the toilet and...
Please do not think I am beating up on men - far from it - surrounded by a son I adore, my father I respect beyond boundaries who shaved my hair ( it's the Russian in him) a friend from primary school who still writes to me, a lover who knows how not to intrude, surgeons who I work with regularly - I love men, I just love them with a bit of healthy distance.
😊🌷
But from your paragraphs I fell you have identified the major issues so armed with patience, you have three in the house, I sense Jack is your rock, be kind to Richard when you can and roll with the rest.
Nothing wrong with the Welsh Coast in January - it will be a great trip.
And you can plan your travel a bit later - not the war - trains working, wood and coal for fires, food galore - just need good cheer.
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Hi Ioana
How I look forward to your posts, but this one must be up there in my list of favourites!
Before I respond, I have exam results news. My Jack achieved:
English- B, Maths-B, Physics- A*, Chemistry-A*, Biology-A, Product design-A*, Business studies-A, Drama-C.
Cam achieved B and C grades with B grades in Eng and Maths!
More on your post later. Got a GP appointment to get some happy pills, although I don't need them after today!
L
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Claire, it's wonderful to get an update from you. I have been thinking about you but work has been a bit crazy, leaving little time for BCO and trolling the Abraxane thread for news. I'm sorry it's turning out to be so rough but it is good news about the calcium and as you say, hopefully you have turned a corner.
Fabulous news about Jack's grades Liz. Clearly he takes after his mother! I'm most impressed by physics. It was a terrible subject for me so I have great admiration for anyone that can master it.
So Liz, it looks like you and I will be in each other's pockets sharing the scan anxiety next week. I had a rather odd call from my MO today, following up after he returned from two weeks away. First of all, he was very abrupt which is not like him at all. While he may simply have been rushed or having a bad day, I couldn't shake the feeling that something was up (there is a chance he is annoyed with me about starting round 4 of the Ibrance - instructions were not entirely clear).I mentioned the issue with the hemoglobin and he wants me to hit pause on the Ibrance and have blood work done right away. Not really a surprise but then he indicated he wanted a bone scan next week, mentioned it was not the most accurate way to detect bone progression, asked when I had a CT last (originally he said we repeat in October, now he says September) and then indicated we may need to consider switching to something stronger. ???
I was completely flummoxed. What has changed between mid-July when we discussed the early July CT scan (which did indicate possible bone progression in my spine and ribs) and now besides the fact that the Ibrance is beating the crap out of my RBCs? All I can think of is possible results from the chest x-rays the respirologist ordered. I hadn't gotten around to ordering copies of the report and wasn't overly concerned as the intent was to see what was going on with the fluid and adhesions.
So I guess tomorrow I will see if I can get a copy of my report to see if I can unravel this mystery.
Thanks for the chuckle Ioana. As always, I can relate. Unfortunately or fortunately, depending on one's opinion, Mr. Right eluded me. I seem to attract the kind of guys who one definitely wants to keep at a distance!
Hugs. Pat
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Pat,
Are you feeling better?
Are you less short of breath??
That would be my first guide as to what is going on in the lung. The rest will take time to resolve.
Then, the Bone Scan was on the cards given the possible bone progression - I seem to remember you said sclerotic - and there was a discussion whether sclerotic lesions were potentially healing.
You are in good hands - given the time between now your first presentation you should havesomething slow moving - so it may not be well picked up by a Bone Scan. A Bone Scsn has a rough 70% sensitivity - add a CT with contrast and it's up to 90%
Wait until you talk to your MO face to face.
(Also very curious to see how your Hb is doing.)
It's always busy on return from leave.
Hang tight,
😊
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Hi Pat
Yes we will be sharing the joy of scanxiety! Mine is 11.45am and very inconvenient as this weekend is a long holiday weekend ( bank holiday) and I wanted to go into my school on both Tue and Wed.
I understand your added concern about your onco's cryptic comments. I woyld be speculating as you are now. Is there an opportunity to contact him and clarify the " stronger treatment" comment? It could well be something and nothing? Hope you get it sorted.
Claire, I hope you begin to tolerate tx a little better. Keep on with the protein shakes. I will PM later.
Ioana- yes men at a distance! I love all my menfolk dearly but are they always conducive to health? Maybe not! Richard is pretty awesome though and super considerate! It is my younger brother who is a bit prickly just now. He can be rude and critical, sometimes hurtful and the new me is learning to push that behaviour away and not engage with him further. His wedding plans have caused some difficulties.
Anyway off to walk off that celebratory wine from last night.
Take care all
L x
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Liz,
You are up and walking after those marks for Jack?? Well done you!!!!!
He is one fanstatic young man - bravo all around - I am so happy for you - I really like the photo of the two of you posted.
So physics it is then - sky is the limit!
😊🍷
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Ohhh so deliciously frivolous!😉
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Love it: badass!
Sweet comments about Jack- thank you
I'm laughing about that poster still..........
Xx
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Tonight's lasagne with homemade bechemel sauce instead of a shop bought jar!
For me this a big deal and I will enjoy every mouthful!
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Blood work back - hemoglobin dropped from 82 to 80. Thank god it wasn't less. Judging by my MO's demeanor yesterday he may have been ready to kill me if it was lower. Ibrance stopped so hopefully it won't drop further.
I'm feeling so much better than I was a few weeks ago. Legs a bit tired (likely the Hb). Shortness of breath is simply a fact of life for me, at least for the foreseeable. My pleural cavity is "swiss cheese" as the respirologist indicated. I still have the loculated pleural effusion and my lower right lung is collapsed.
And yes, I am in good hands. I couldn't pick a better oncologist.
Wishing you all a lovely, relaxing weekend!
Pat
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Yum.... Do you have room for an extra at the table?
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Pat,
This is good news about the level not plummeting.
Hang on in there my friend.
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Liz,
That looks scrumptious - love it!! I love lasagna😉
Pat Hb is holding - you are so strong.
((())) to All
🍷🍀
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Gosh Liz,
Can't stop thinking about THAT lasagna bake - yummmmmmm ....😊
You are so on my destination list now!
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Well Liz - now we can plan a nice glass of wine with your fab cooking. I love Lasagna with bechemel! Yum. That meal would perk my puny appetite and the company would be outstanding. Just wish we all weren't so far away from each other - you in UK, Ioana in West Oz and Pat in BC, and me in LA. Must do a virtual dinner soon. So happy about your son's grades. Pat - what are they planning after Ibrance for you? I am starting round 3 of Abraxane on Tuesday - rather harsh, but I can feel the chemo working. Please bear with me if I don't post as much - chemo is very draining. So far no port. weee~
(()) Your girl in hot CA
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Claire,
Fully understand if you don't post as much. Great to hear you say it's working...
I'm thinking of you my dear.
L
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Understand completely Claire. All of the chemos have a kick unfortunately but it will kick the cancer to the curb to get you ready for the next cruise.
I suspect my MO is thinking Xeloda. He's mentioned it a couple of times but it's been very challenging to know how well I am responding to treatment. The bone scan may provide some clues. I will be disappointed if I need to switch, primarily as I had hoped to stay on hormone treatments as long as possible. I don't know if I can switch back down the road. And my inability to handle the Ibrance is also a bit of a bummer - stupid woosy blood! But I originally wanted to hold off on it until later in the process so perhaps I will benefit from one of the drugs coming on it's heals.
A virtual dinner party could be fun. We just need to figure out how to overcome the issue of time zones. Should we have champagne for breakfast Claire or should we ask Ioana and Liz to drink at odd hours?
My thoughts are with both of you. No stress Liz and no SEs Claire!
Pat
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dear Claire,
If I count right - you will get a week off after round 3 - so things should be on the improve.
If the hypercalcemia is settled so is the bone loss - good ( I don't think the Xgeva shot on its own is responsible) my feeling is your treatment is working.
Let's hope as the cancer is retreating you will get some of your energy and appetite back.
My only thought is eat a little ALL day - just keep nibbling on something all the time. Make little sultanas, pineapple and nuts mixes ( or what ever delights), get some small cupkes with funny tops, milk shakes, small green salads with some fruit on top - grapes or mango or tangerine - just nibble nibble nibble.
Ohhh - and I hope you don't think it's vile but chamomile tea - as much as you can drink.
Very soothing on mucosa and full of apigenin - odd but some CDK actions.
Absolutely in on the virtual dinner - I am certain I don't mind what time I have a glass of wine.
(((())))))
To All 😊
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Today I covered 8 km walking in the beautiful Peak District.
Had a picnic, complete with a gin at the top!
Currently on the sofa. Major aches! Great day though.
Love to you all.
L x 🌺
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How beautiful. What a marvelous way to spend the day. Glad you were able to enjoy it and - some aches are good aches!
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Love it - love the walking - good to see you outdoors!!!
What did you have with your gin??
Thank you for posting - just love it....😊🌷
Hate scans, hate blood tests, to be honest I hate having anything done - always did - which is why ....I so very rarely went to the doctors. And most of ALL I hate waiting rooms - I mean especially for oncology you would think they could keep to their schedule. Does that make me horrid and spoiled?
Ohhh gosh Liz can't stop thinking about that lasagna bake - I even opened a bottle of Clonakilla Shiraz - yum....or Claire any deep French suggestions?? - or maybe splash out on a Barberesco....yum again.
Pat - experienced doctors rarely trust new drugs - oncology might be THE exception but the more years on a doc the less likely he or she is to be immediately swayed by something - it will be an interesting conversation you will have with your oncologist and will see whether he sways towards a setting that he trusts to " get on top of things". So the question of whether abemaciclib is on the table down the track is pivotal - I suspect ashrug, deflect, smile - experienced doctors need the drugs to have a few years on them...🙂
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Food seems to be a common theme!
Lunch with Lucy in York. Pins coladas! Nachos and burritos!
More later.
L
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hi Liz great news about the boys results yahooo!.both of us seem to be off the beaten track fonding our mojo!
Bucket list ....queensland Carnavon nat park treck 14km return exhausted but enjoyable
Huggs B
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