Shadow in chest is recurrence
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Di- so glad to hear that there are many good things happening in your life and I agree that it is important to stay busy.
Ioana- for you too a new normal is emerging. Takes some adjustment but it's all good.
I will let you guys know about scan results on Fri.
Claire- looking forward to hearing about this holiday.
Catherine- phew so hard. We are both losing faith from time to time. I have occasionally jumped onto the HP thread and seen some long term successes there. We just need hope.
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Scan results after 3 THP- tumour has halved. Onco really pleased.
More to follow soon. Need to focus on my boys now who have their prom tonight!
L x
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Yay, JackBoo!!
So happy that your scan brings good news! Hope your household is enjoying prom weekend...0 -
Thsnk you Chirps: good to hear from you. I hope you are doing well.
Liz.
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Liz that is great news about the tumor shrinkage!
I had my CT scan Friday. My oncologist called me Friday evening and said the scan was clear he only had results from the neck and abdomen I will probably have the chest results Monday. I have access to my results and the next scan says there is a chest wall mass. I'm praying that the mask is scar tissue. I see oncologist on Tuesday and will know more.
You're all in my thoughts and prayers!
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Hi Di
I am thinking of you too as we both go through this very scary results/scan stage.
I am pleased with the reduction and it shows this gruelling treatment is working. I do have mild neuropathy in fingers and toes which is being carefully monitored. My onco is revising me st each cycle now. I have agreed to tx 4 and will see what happens after that.
You would think that it might be getting easier but actually I'm finding it hard at this point to continue with the Taxotere and I am going to need a port which is a major complication for me as my left internal jugular vein is no longer functional and so the right side is picking up the slack. Hence the reason for not quite happy dancing at this point with such good results. Operations scare me and so I have so much respect for you with everything you have gone through.
I am praying for you that this chest mass is scarring from the rads you had which I seen to remember were quite extensive. I was told that some scarring was possibly present on my CT scan due to tumour shrinkage and that this scarring may never go away. I'm hoping this is the same for you.
This whole thing is just a constant mind game though as we battle the psychological trauma as well as the physical.
I have had great advice on this board though and try everyday to push it to one side.
This has been a happy weekend with both my boys enjoying their prom. Also I had a day out in York with my husband and enjoyed a delicious Italian meal and a glass of fizz. These are the times to remember and focus upon. I do try anyway.
Keep me posted on how you get on Di. You deserve some good news and whatever the outcome we are here for you.
Love Liz
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My stepson Cameron
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Left: my son Jack with his friends Luke and Megan.
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liz, what lovely boys you have! And you look great yourself! Happy times, good memories being laid down like fine wines.
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hi liz so wonderful of you to share your family ..happy times for both young men.as teachers we get to see the personal side of so many young peoples lives.good tohear your positive report xo Bright
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hi Liz,
We went literally walk about - no internet - lots of table tennis...
Great scan result / enjoy and hang tight to it!!!😊🌷
Jack is wonderful - so happy for you!
Hugs to all
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Liz,
You are spot on about the big psychological factor
Biggest of hugs,
Ioana
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Thank you guys for the sweet comments about my boys and for saying I'm looking good. I must make sure I don't pst a day 3 photo as that will not be quite so pretty.
I can't tell you how happy your support makes me. I am so glad to have 'met' everyone on here and feel proud about how far this thread has come.
L
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hi Liz,
When is your fourth treatment?
Is that neuropathy holding up or not playing ball?
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Hi Ioana
4th was today and neuropathy mild but noticeable everyday. If it worsens after this tx we will either reduce or stop Taxotere but as I am responding well, ideally I want to do 5&6.
I got your PM and will reply when I'm not quite so tired.
Liz
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Hello lovely Liz - I am back from my Baltic cruise a little under the weather from jet lag and some jaw pain. Here are some photos to cheer you. I walked 4 miles doing the Hermitage during the day and Catherine's Palace at night. Amazing city. Please feel better. Ioana - how are you darling girl? I toasted you with a French Sancerre.
Claire
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Lalady1 - what a brilliant journey - it is one of the places I dream to see one day!
Thank you for posting - I follow the Ibrance thread for reasons that you know - so noted you are off to Paris!
Brilliant - travel well!! 🙂 My first bottle of Sancerre was about 15 years ago at Jules Verne, Eiffel Tour - it was much too expensive a meal for my budget, yet I have never regretted splashing out on that lunch. Let's toast again - an epicurean tour should be a delight ( I lived and worked in Paris for 2 years, so definitely virtual travelling with you)
Liz - how are you doing ?? You are impossibly brave and have such a great scan result to lift your spirits.
I am doing ok - enjoying starting work and getting back some breath.
Trying to keep it all very simple.
Hugs to all,
🙂🌷
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Claire - soso happy you took your Baltic cruise - precious memories and images you hold!
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Hello to everyone
It I had been a short time since I posted.
Claire: looks like the perfect holiday. Great photos and clearly a place (s) you have visited that will remain with you forever.
Ioana- you go from strength to strength which is just wonderful to witness.
To the rest on this thread and new to it: let's keep that virtual hug going!!!!
Day 10 after my 4th tx today. All SEs following a predictable pattern. The big D is an issue still and I feel like fatigue is building. So all what I'd expect really. At this point I am lacking the will to go on quite a bit which might sound strange after such a positive scan.
Am meeting with onco on Thur. I may have more news on rads but prepared for a big NO as position is dreadful. I think this aspect of my case has been one of the hardest to deal with.
By next week I will have made a decision about work as Sept is not too far away.
Of course I wish to get to NED- who doesn't. This sucker was 11mm at last scan which was 14th June. Mommyerin and Catseme I know we are all going through this. I think I can speak for us all when I thank other members for staying the course while we try to get through.
Other news: Lucy was awarded the English prize and Jack has started his first job in a shoe shop. Richard and Cameron are off to Wimbledon tomorrow- so jealous!
Jack has made me a raised bed for herbs 🌿 he is a cracking little carpenter.
I wish you all a happy Sunday.
L
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Hi all
My update is that I am dropping T after 4 cycles due to concerns over neuropathy. I have my next scan at the end of August.
1.1cm was all that remained after 3 tx. I meet again with Sheffield to discuss rads in 2 weeks, however the final decision on this will need to be made when the scan results are available. York have ordered a CT but I think the rads docs might want a PET for clarity? Will ask at my appointment.
Zoladex for ovaries begins next week too, so I have zoomed ahead towards maintenance tx and can't say I'm sorry to leave T behind.
I visit my brother in Aug and am aiming to return to work in Sept.
Love to you all.
L
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Good morning lovely Liz - sorry T is causing neuropathy, but you got a good tumor reduction. Thrilled you can go back to work and be distracted from cancerland. I fly to Paris next Saturday with my sister for a Paris/Normandy cruise. I used my miles to plus up to first class on the outbound and business on the return. Once back plan is to start IV Abraxane for a couple of months. If I respond well, I will move on to Xeloda. That is my story. I will work from home the next 2 months as I can't drive much on IV chemo. But I will send a Paris pic or two and toast you and Iona while I am cruising the Seine. Much love from hot and sunny LA!
(()) Claire
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Great to see your post Liz. I've been thinking about you. Sorry to hear about the neuropathy but it sounds like you had a good response.
Claire, I hope you have a lovely trip. We might end up on the same treatment again. My MO mentioned Xeloda on our last call as I think he is contemplating another change. I had a CT scan to see what was up with my catheter - no drainage but had been feeling lousy and quite SOB. Looks like it's blocked so that mystery solved. Unfortunately the CT also showed progression in the bones. I'm not convinced that I am not responding to the Ibrance/Arimidex combo however. Another topic of conversatIon for my next appointment on the 24th. In the meantime, thinking of you enjoying the food and wine in France. Maybe once I lose the catheter it will be my turn!
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Claire- best wishes for a wonderful trip. I have been watching the Tour de France this evening. Sounds like you have another great trip planned and I look forward to your updates and photos.
Pat- sorry to hear about your issues with the catheter and progression. I hope they can give you some answers about the way forward now. Don't know about you but having a plan helps. I also think it can be difficult to know for sure about the efficacy of these drugs. My own decision to quit T after 4 tx plays on my mind. However, fatigue is building. It concerns me that I am 16 days out from treatment 4,but not feeling the recovery phase.
I wish I didn't have to have HP on Thur. I wish with all my heart that we all could just be released from this now. But we go on and are strong, amazing people amidst all this we deal with.
Ioana- how are you my friend?
Erin- you will be on the early days post tx and I'm holding your hand.
Too many to mention who jump on this thread but hi to you all and best wishes.,.
L
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Hello Claire,
Paris and Normandy sounds glorious - I have never flown first class but I hear it's awesome so enjoy!!! Enjoy and enjoy. Bugger about the Afinitor not keeping in but your oncologist seems brilliant and the plan clearly solid - all with you waiting to see how Abraxane does.
Sadiesservant - it's very difficult to know when a lung dries up ... sometimes they chugg along and one day bingo it's all over - I am with you on - not being certain about Ibrance/Arimidex not working - these drugs move slowly - it takes a good 6 months from everything I have read - and scans are not always reliable at showing progression...osteolytic lesions are different from mixed or sclerotic ( last can be healing areas...) but obviously I am miles away with nothing tangible to look at but an impression in front of me ...or a very VERY strong wish - so don't listen to my rambling...
Liz - you have done well - enjoy 🙃 your scans and be positive for the next lot.
The more treatment I had the more tired I felt...
I have been randomised to Placebo on the Pallas trial - Claire knows, it is the trial looking at Ibrance in the adjuvant setting. I agonised a lot over committing to White cells of 1 for two years in the adjuvant setting - so here it is no drugs just arimidex 😱🙄 yoghurt, exercise and a crazy attempt to regain, maybe surpass previous energy levels...
( retrospectively I spent the 12 months prior to diagnosis exhausted - lots of life events ...) I did not have a clear impression whether it would help long term I am impressionless really on the placebo bit - maybe a bit relieved, I don't have to worry about neutropenia in the world I work.
Hugs to all,
Travel well - ohhh SadiesS - how I am going to cheer when you tell me your lung is dry!!!!!
Ioana 🙂🌷
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Thanks for the input Ioana. Always appreciated.
One of the other ladies on the site had PE in both lungs and she found that her PleurX clogged a couple of times when she was close to drying up. My fluid definitely decreased and then it was nothing which would lead me to believe it was diminishing and then plugged the catheter (the fluid also go much more sanguinous with sediment).
As to the AI/Ibrance combo and the progression, I think it is starting to work. A lesion appeared on my left chest after about my second round of chemo and did not want to heal. In the last couple of weeks it has definitely decreased. An additional issue, my MO has not been monitoring me with scans as he felt we could judge response by the reduction in fluid. That creates another issue in terms of determining the seriousness of the bone progression. We know I spent two months on Taxol and did not respond and it takes a minimum of six weeks for the AI to start to work. So, the question in my mind is when the progression occurred.
All discussion points for my visit with my MO in a week. Hopefully this will spur him to scan more frequently. I'm pretty calm about things as I am sure we will find the right cocktail but I want to know what's going on so that I can make informed decisions about work, home, etc. Balancing everything is a bit of a challenge already and, as we all know, each treatment comes with a new set of SEs.
Thanks for listening. Cheers. Pat
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Hello to all,
I have been following from afar...
SadieS hoping that lung behaves.
Liz - I know you have your thoughts on stopping the Taxol at 4 - but IMO it's a good move - you'll know a bit more over the next scans.
lalady1 - would live to see sporting sexy shorts - hmmm you do make me smile!
Gosh - you are one tough lady
Has anyone heard from Di??
Hugs to all.
😊🌷
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Heading for Paris today - sending warm wishes to everyone and toasting Liz, Iona and Pat with a some champagne from First Class. Home on the 30th - heading for Abaxane, so might not post as much. You are all so special!
(()) Claire on British Air seat I A. :0
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Thinking of you Claire. Enjoy the Veuve Cliquot (used to be standard first class fare and not a bad choice)! Hope you have a wonderful trip. My catheter comes out on Wednesday so maybe travel will have more appeal soon for me
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Hello ladies,
Liz - how are you - I have caught up a bit with your symptoms by following you on another thread - hopefully side effects should settle once off Taxol 😊 Check in when you can.
Claire - enjoy every bit of it!
I love champagne !
I have a feeling Abraxane will kick ass on your return - I know there are a few things playing on your mind and you are one super strong lady - have you made a decision on the port and where it goes it in?? I still have mine ( it will probably go out when I am ready to take my spants fond breast off) - and you can see it because although it is low chest placement the surgeon cannulated the Internal Jugular Vein rather then the subclavian ( less chance of a pneumothorax but you can spot a fine line in the neck) - I hated absolute detested the thought of it ...with a double vengeance. And the silly thing played up on my first chemo so they had to go peripheral, then image the port then it was fine and miraculously worked for the rest. I am a whimp ( ode to Liz) I found the peripheral infusion of adriamycin horrid and I have good veins. The cubical vein pick lines or similar work well but I am not certain they are less conspicuous - at least on the tool kits we have here...
Pat - SadiesS 😊
I read the Ibrance thread in the context of the Pallas trial ...- hmmm - so happy your catheter is coming out!!
Bugger on the sclerotic lesions - am I wildly naive to want them to be healing mets?? You live in such a wonderful part of the world - I wish you feeling less tired and more energetic and getting lots of outdoor time. I told Liz we had a winter holiday ( although I had just got back to work..). I noticed the direct flights Air Canada to Vancouver from Brisbane - and we went up - it was great!!
( as an aside - Pat your non narcotic/opioid pain (ie apart from the narcotics - endone, OxyContin, Targin ) options should include - I have listed a common drug from each one of the major classes I can think of without adding paracetamol and anti-inflammatories which are not always tolerated because of GI side effects, lipid profile and renal function
Lyrica
Palexia ( tapentadol)
Catapress ( clonidine)
Tramadol ( if you can tolerate it)
Amitrytilline 10 mg nocte
Ketamine lozenges 50 mg
They all have side effects - some of these affects mood, anxiety, can cause low blood pressure.
It is why IMO - you need a personal pain physician once you start getting pain from cancer - the aim being off opioid ( oxycodone, morphine type drugs for as long as possible). Certainly there's is work suggesting morphine like drugs may be immunosuppressive. I like the marijuana suggestion!!!! - I believe it should be legalised for medical purposes.)
I will be honest - I love my work - but given the last year, I find myself less able to take care of myself during long days, even for something as simple as staying hydrated. It is a tricky juggle, and I am trying to find ways to reduce my hours but remain in touch. I am ok for energy mostly, I just do not bounce back with the same speed after a tough day. I also find that there are other things I enjoy doing...if only someone would take over my bills...
Finally the ever so clever Z has a thread on cfDNA as a diagnostic. I am following.
I hug you my virtual friends
Here to walks, and gardens, and champagne and Mozart on Sunday mornings
😊🌷
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