Shadow in chest is recurrence
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Marian,
Hoping all goes well with your CT. It will be 2 weeks on Fri since mine. I wait. The only reason I manage this wait is my job. Tonight I was at a parents eve until 8pm. It isn’t great but it plays to my head in the sand approach! I can try and call tomorrow afternoon....
Ioana,
Do not feel any guilt over the advice to stop at home. It was the correct advice. I just happen to work for a bully who is systematically bullying his staff at their most vulnerable. The latest victim is my colleague, Sarah, a Spanish teacher. She hit her head whilst sledging ( during a recent spell of snow) She has delayed concussion and headaches and has been advised to take it easy. Trunchball called her to try and get her to come back in. She was sensible enough to ignore the phone. Incidentally, Liam Neesom’s wife died after hitting her head in a skiing accident,
In contrast my adorable colleagues just keep hugging me and a kind of shared love has spread around the place. So it not good enough but it’s not just me who is getting the “chat”
Be in touch again soon
Liz
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Liz, you have a break coming up don''t you? It is spring break in much of Vancouver and Victoria right now. Glad that your colleagues are sharing the love but it is so sad that in educational systems there can be such a disconnect between layers of staff.
Pat, I just responded to your comment on our British Columbia thread and for the rest of you, it was in response to my relationship with my MO. Copy/paste here to give some info. I am currently on the 0700 ferry from Vancouver to Victoria having been in Van since Thursday for an amazing celebration of life followed by a wake at the family home Friday. Yesterday I hung out there with babies, kids, older friends and 20 of approx. for a leftovers supper. I will go back week after next for 4 days with my friend Elaine whose loss is very difficult. He died very quickly from CJD (Creutzfeldt-Jakob disease).
So this is what I mentioned to Pat: Pat, It is not exactly that I do not like him but I feel that our relationship changed in January when I talked about a second opinion. Our meeting on Wed. was fine but perfunctory as though he is being careful. He must have some back or leg pain and I guess it is the contractor part when he says he has to pay the bills~~i.e. no medical benefits. Since I know that treatment will never be over I need/want to feel comfortable. When looking at my printout of the CT scan, he said that if Ibrancse does not work, then there is tamoxifen, extamasane, etc. Considering that we both thought the picture did not show change (report not available that day) I thought it a bit early to comment on future drugs.
While in Vancouver between events on Friday I dropped in to BCCA to start the process of ordering CD's from an MRI and CT done in August. I missed closing by 6 minutes but sat down and called again my old MO's secretary asking for the MO to call me. Lo and behold, she called me yesterday as she was on call at BCCA. I had not spoken to her since July 31 when she went on a 6 month sabbatical. It was a lovely 20 minute conversation and started with some recent history though she had already had a look at my file. I explained my feelings about my current MO who she does not know. She gave me some good advice but recommends I stay on the island yet knows some MO's there she thinks would work. First she wants me to clear the air next month with my current MO then see how that goes. I mentioned that I was told in August my the RO that I had no choice in choosing an MO. She says not true and there are ways. If my next appt. does not go well, then I am to contact her and she will put out some feelers and meanwhile will do some checking. She and I had 5 good years together and we got along well and she recognized my adventurous self. She also wants me to talk to my pain doctor about methadone. I have always felt reassured when talking to her and again this was true.
On other fronts I am feeling good and ready to tackle the loss of use of my right hand. I also have Edith, my little 2.5 year old, tomorrow and Thursday so will have some busy days! Her mom who is expecting twins end of June, told me it is a boy and a girl and I am excited for the whole family and only hope I can keep my energy up!
I have been accepted to a UBC program on chronic pain and fit all the criteria like pain on a scale of 4 and higher, have had cancer and treatment, have the use of one hand (at least) be able to nod my head and a few other things. Easter weekend a technician comes to install a computer and headphones I will be using for 30 minutes/day, 6 days/week for 4 weeks. I will tell you more as it develops.
Exciting times!
Love and hugs everyone,
Marian
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Hi All.
Marian, I understand completely that you need to be comfortable with your oncologist. It's wonderful that you have someone in your corner who can help you to find a better fit should things not improve. I would do exactly the same thing if my situation was different.
As I mentioned on the other thread, one of my biggest worries is that my MO will, for whatever reason, leave Victoria. (Thankfully, I think that highly unlikely given that he has been here so long.) We have a great relationship and I know I would struggle for quite awhile if I had to switch to someone else.
I met with my MO on Friday. He feels I am doing very well and I would concur. I believe Faslodex has this going in the right direction now. I scan in a week so it will be interesting to see if there is any improvement. My breathing is certainly better and, while the pain in my groin, chest and belly have not disappeared I think they may be lessening (or I'm getting used to it...).
We had a good chat (and a bit of a laugh) about the naturopath that I saw. Obviously I did not have time to go into all the gory details of that ridiculous consultation but I did flag the most worrisome bits. Interestingly, my MO wrote back to the naturopath to seek clarification on what specifically we hoped to achieve with the recommended treatments (i.e. improved GI, etc.). My MO is open to exploring alternative therapies provided there is no harm but also doesn't want me spending a fortune on something that is inappropriate, unnecessary or ineffective. He has not received a response. (In all fairness, NPs are not funded in our system so the naturopath would be doing this on his own dime. However, I would note that my MO also did not need to follow up.)
Ultimately I am not quite sure how I will proceed. I am not dismissing alternative therapy outright but am also challenged by the lack of hard evidence and the cavalier approach. Given my level of uncertainty and doubt, it was rather unfortunate that my consultation with the naturopath was such an epic failure. He's an arrogant cowboy and I don't do well with that much attitude!
Must get on with my day. Income tax filed this morning and then hope to get back into the garden this afternoon. Spring has sprung in Victoria and if I don't get moving things will get hopelessly ahead of me.
Hugs to all. Pat
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Hi all,
Interesting comments regarding MO’s. So important to have a positive vibe. My own Dr P used to work alongside Prof Johnstone at The Marsden. I have faith in him. He appears to have made the right call when we stopped Taxotere at 4 treatments. However I am still terrified by our meetings- just the nature of the beast I suppose.
Good news- I have just booked a fabulous luxury spa break as part of my plan to have a week’s holiday this Easter. The break is at New Hall, Sutton Coldfield: historic house, sumptuous spa, gym, fine dining, spa treatments booked, time to read, sample a cocktail and breathe... want to find some thing else now for the rest of the week.
We will head for some sun in July when the temps in Italy/Spain/Greece will be guaranteed. After much prevarication, it is booked tonight and I just have to think about what to wear. I am really looking forward to a swim, haven’t done that since my recurrence a year ago.
Pat- I am so so happy for you with this improving experience on your regime.
Marian- good luck with the toddler. I would not have the energy! Glad to hear you say you are feeling good and it must give you a lift to be doing something proactive about your pain issues.
Love to you all,
Liz x
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Oh and leaving the teenage daughter at home.
Will we come back to a house or pile of ashes...
Mmmm....
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Liz,
This made me laugh as we navigate parenthood in modern times.
Hugs to all,
😊
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Ioana,
Really laughed at this! I am a fully paid up member of the crap mothers club!
Nurse rang with what appears to be good news.
No official report on scan yet but Dr P has had a look at the images and says they are “great”
Feeling like this must be good news.,
Official report on Thursday.,
L x
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Fantastic news Liz. And yes, I would take that as VERY positive.
Ioana/Liz thanks for the laugh. While I don't have any children of my own, I can appreciate the joys of parenthood from afar... and I have employees!
You may appreciate this video: https://www.youtube.com/watch?v=Uo0KjdDJr1c I can definitely relate... LOL.
Pat
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Liz - fabulous news !! Chuffed - I am one big smile.
Pat - it sounds very promising - could you ask your MO for a name - he must be getting some correspondence/emails over the years - I wouldnt press him I would just drop it in - has he come across anyone he thinks might....
Marian - as with Liz - I feel a bit guilty I started this process. It's difficult over waters and I am learning I probably should keep my thoughts to myself. I am sorry your MO reacted this way but someone solid in his practice should do at least one of two things:
- realise that you still have questions and go through his reasoning again with you without taking offence
- agree it needs some supportive evidence and would ask you if you want help in getting that second opinion organised.
A bit like Pat's MO - Pat is spot on IMO - MO is smart enough to know the alternative guy is all talk but the truth with cancer no one has the book, so being cocky about anything bites you in the but.
I posted this on the immunotherapy thread. I like this talk - and particularly this slide. It talks about early stage but the message is similar - 5 actionable mutations.
The talk is overcoming resistance thorough genomically informed investigational therapy.
Hugs to all,
😊🌷
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Hi Ioana,
I think the big thing with my MO is the absence of a delicate ego. He isn’t threatened by a question or two. Of course, I have never pressed him for a second opinion but he was not phased by the alternative therapy discussion. He has been clear that he would do the same thing in my shoes.
I’m not quite sure what you are referring to as promising. Sorry.. too many posts - I lose track!
So happy you have booked a trip Liz and that spa day. Good for you. You deserve it!
Pat.
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Ohh Pat - Faslodex and less symptoms soundpromising...mea culpa - moved straight along.
(We agree there - dont do ego well - it's a very dangerous thing in Med - in my view a sign of stupidity - nothing like patients to remind you of humility - some surgeons need a little to do what they do and keep doing it but mostly comfortis better found with family, friends and nature.)
And the But is a Butt😉
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great news liz enjoy the holiday spa woo hooo
Bright in hope
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Hi Everyone,
Thank you Bright for your post and for the whoop!
I received the full report from York yesterday and it is good news. The treatment has worked very well and there is no visible sign of disease on this CT. The scan from April 17 and March 18 were shown side by side and the difference was amazing. The original mass was 3.5 cm and had invaded nearby lymph nodes. I didn’t ask how many or their name but am happy with a degree of ignorance!
Also the vascular picture now looks like a “normal” patient. Unbelievably, the previously compressed internal jugular vein now has blood running through it once more. One year ago the vein had a complete occlusion. It was the DVT symptoms that originally alerted me to the recurrence.
Dr P said I could come off anti coagulation therapy but suggested staying on it when a port is in place as the risk of a thrombus is heightened. More than happy with that proposal.
He is hopeful that I will achieve a long lasting remission whilst being careful not to quote any specifics. Without me asking though, he did tell me about a patient on this protocol who has multiple organ disease and is now 2 years out and stable.
Told him about the headmaster’s comment about me lacking resilience and he let rip with a tirade of expletives. Somehow the sound of my rather formal Dr using the F word was rather shocking but also funny and heartwarming too. He said he could have signed me off on anxiety alone which of course you all know from my posts is true.
Finally, he spoke about living in the moment because one day he will probably have to give me bad news. I know that and he was just saying it as a way of trying to make me celebrate the good times.
I finish work today, going in briefly as the students are now on holiday. Will PM you guys over the next few days. Need to catch up on your individual stories now that I have some down time.
Thank you for being there.
Liz x
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Liz, I can't tell you how happy I am to hear this news. What a fantastic way to start your break. I am so pleased for you and, I really like Dr. P. He is definitely a keeper! I can imagine he was extremely irritated by the attitude of your headmaster. While people try to be supportive they really don't have a clue what it's like walking in our shoes and often their insensitivity shows when they are being inconvenienced. Good for Dr. P. Your headmaster is lucky he doesn't have their phone number.
Must get on with my day. It's year end chaos here - in typical fashion I found out I have a contract to get out the door in the next 5 working days. And things finally fell into place for an initiative we are launching. It's been hurry up and wait and now.. GO! Lots to get done to get things back on track. All I can say is.. thank god it's Friday!
Hope you have a lovely break Liz and wishing a restful weekend for the rest of us.
Pat
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Hi Liz,
That' wonderful news!!! Congrats!!!
I am at the airport waiting to fly to Boston to visit my sister. She had her surgery on Wednesday. All went well and she is home recovering.
I had my 3 months scan and the nurse left a voicemail saying that the scan looks great. Not sure if it means complete response but will find out on April 3. I knèw that it would have been positive news as other women undergoing the same regime had positive scan.
Hope you all are doing well. it's boarding time
Hugs
Lola
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Hi Liz,
Brilliant news !!! Enjoy it for every last drop!
That Easter break sounds divine.
Hugs aplenty to all,
😊🐣
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So good to see the good news Lola and Liz! Pat, you need this weekend from the crazy work schedule you have had~~hope you do not have to work this weekend?
Marian
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In this case, rest for the wicked! My team delivered in spades today with no requested changes to the package of briefing material so high fives all around. That frees up Monday for that contract and to finalize prep for a baby shower. (The wife of one of my staff members is expecting their first child in three weeks - he is a lovely young man, very keen, dedicated and relatively new to both the job and the country. He is always very thoughtful and a real team player so I’m looking forward to a big splash and a bit of spoiling. Plus, buying baby things is so much fun!)
So,this weekend I can relax a bit (well, and go have a CT scan just for fun). Hopefully I will find some time to plan those excursions for May.
Cheers. Pat.
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Hi all
I am really enjoying a relaxing weekend which is even better this Sunday evening knowing that I don’t have to get up and experience Mon morning!
Have joined a gym today as the first step in achieving some exercise, relaxation, time out etc. So tomorrow I am going for a swim, which I love and can’t wait. There is a lovely cafe too where I can have smoothies, read the papers...
Lola- how are things in Boston? I was picturing you posting on this board before boarding. I hope your brave sister continues to improve and I’ll be thinking of you on the 3rd as you get your scan results.
Pat, the baby shower sounds fun and also planning your trip now on the back of good treatment news. Keep us posted. I can be in London in under 2 hours from where I live. Obviously a weekend would buy me more time to meet you. Let’s hope it is possible..,
Ioana, I will PM you my friend.
L x
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Hi lovelies - just checking in as I slowly recover from my fall and low BP. I will restart Madame X in 2 weeks and will be staying in London for a week now rather than a cruise. Think its safer for me as I tire easier and my sis and I can take a few guided tours. Will be plussing up my hotel with miles.
)Claire sending kind thoughts to all
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Claire,
I have PM you.
Here I am with new hair colour. Rather fluffy. I liken this look to a dandelion clock that has been dipped in red wine, but hey I have hair and am very pleased too!!!!
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Claire - good to hear from you!!😊 I love London - smooth travels.
Liz - it is growing - are you growing it back? I am still short, very short after 2016 - and undecided as to what to do with it - it would grow if I let it.
Lola - best wishes for your sister. I know you are waiting on a scan.
Marian - 😊, I now feed the chooks cheese and yoghurt..
Pat - 😊😊 you don't have to finish a year's work before you can get on a flight you know....
Hugs to all
🐣🌷
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Morning all.
Argh... this just never gets any easier. Arrived at work to find that I somehow missed an email from my MO yesterday late afternoon. He wants to "chat". Not a good sign so obviously something showed up on the scan. He's very good about just flipping me a note to say all is well when things are stable.
He's tied up this morning but will call this afternoon sometime. The waiting game, no matter how short the wait, is never easy is it...
Love to see you treating yourself Liz. Ioana and I had a chat about hair a while back. I chose to keep mine short after my first go round with BC. I would have never had the guts to go this short but when it came back in a realized that I quite like it and it is soooo much easier to look after.
Hope you all have a wonderful Easter weekend. I'll pop back in when I have news.
Hugs. Pat
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Hi Pat,
I have just seen your post and sent you a PM. Wish I could be there to wait with you. Fingers are crossed it’s nothing.
Liz
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Hi All. Well... as it turns out, still stable. My MO surprised me as he is usually pretty careful to avoid anything that will cause unnecessary stress. In this case, he wanted to chat about how I am feeling before confirming that we would continue on with the Faslodex.
I do understand his approach. The issue for us both is that the scans are not the best tools for accessing my situation. Bone scans seem to be useless. It takes time to determine if there is healing in the bones and the pleural mets are tough to assess. I asked him about the peritoneum as it has never been clear to me if it was involved. His response was equally unclear... he indicated that the pleura is being pushed down due to the thickening and that the peritoneum may be involved. Oh... and lots of mets in my right hip so that likely explains the groin/hip issues.
Well, must run but thought I would let you all know that I am heaving a sigh of relief. There is a very LARGE glass of wine in my immediate future!
Hugs. Pat
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Great news Pat!!!
Hugs 🙂🌷🍷🐣
Any benefit from getting rads to that hip?
The stuff on CDK7 posted on the liver thread by Z is interesting - ER + add to list.
( to be honest I am worried about Z - but I know she has lots of knowledge and a huge support base..)
Hugs to all,
Lola - let us know how you are when you can
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yikes Pat - try some rads for that hip. Are you getting your lung drained at all? Liz - I reset my booking for UK, still arrive on May 30th - departing June 6th just shy of having a glass of wine with Pat (sigh). Staying at Claridges (why not?) and arranging a couple of car tours to Stonehenge/Bath and Cotswolds. What day can we see each other? So looking forward to giving you a hug. Wish our whole group could meet - we need each other. Sorry to hear Artist passed.
(()) Claire on a grey CA morning
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Thanks all. Hip is an annoyance at this point. I don’t feel it’s bad enough for rads and I’m hopeful that Faslodex will beat it back. Sticking with the fanny pack for now which should keep me SE free for my trip.
Hugs. Pat
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Hi, Liz, Claire, Pat, Loana, Marian
I spent from 12:30am to 5 am in ER. I developed a horrible pain on right side at lower rib area. I tried to lay down when it started and pain was excruciating. I had 2 chest x-rays and bloodwork. they found a walnut sized mass. I just can't catch a break....My emotions are all over the place...I didn't have any symtoms. This came on as fast as snapping your finger. After I was released from the hospital we all decided to go eat. the restaurant is just down the street from my house. Some man pulled out of a side street and never looked and hit us in drivers and passengers doors. We got a little banged up but we are all ok. I have to call my oncologist Monday and get ct scan. i had a scan scheduled for the 23rd. I'm getting tired of fighting..I just don't know if I can keep putting myself through this any more.
Hugs to all!
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Di,
There are no words. I’m so sorry to hear this news. As I posted a couple of days ago, this just never gets easier. I haven’t faced anything as challenging as you have dealt with (with grace I might add) and yet I also feel like I am on a roller coaster. Up one minute and then down the next. Sending a virtual hug as I don’t know what more I can say.
What treatment are you currently on? I know at the moment you are overwhelmed (and the accident just adds insult to injury) but I’m sure your onc will have some tricks up his or her sleeve. Stay strong my friend. We’re here for you.
Hugs. Pat.
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