Hi Ed and Lee.  Hope all is well and wondered how you are getting on this week.  I feel extremely tired and not sure if it’s the disease or the Denosamub plus also started on Letrozole this week.  I am still waiting for full results of bone biopsy and am emotionally exhausted.  Trying to go out as much as possible to forget about it but once home I struggle with what is ahead.  Hope you enjoy your weekend 

HI Cosmopolitan and lee.

This week has been ok other than backache a flare up of the rash and the usual fatigue. Just one dark day when I could not lift my spirits and the world weighed heavy. Had blood test at the clinic today as no appointments at phlebotomy over the bank holiday. Get first injection of denosumab next week at same time as cemipulab. I hope there are minimal side effects as I plan to drive 4 hours ( with lots of breaks) to visit family. 3 days after the jab. Been on light duties in the geenhouse pricking out vegetable plants. I find it hard to stand still for a long time, it kills my back, so take regular breaks to either sit down or go for a walk.

I hope your week has gone well and that the Letrozole has been ok. Keeping active as much as you can seems to be good for mental and emotional health and a slightly better nights sleep. Take good care of yourselves.

Ed

Hi Lee

I would definitely love to see the Northern Lights what a fantastic experience. As you know all about back ache caused by cancer in spine like you I can sit for about 2 hours max. So 2 hours in a bus, 2 hours on a plane, trains are OK because you can have a walk up and down the train to stretch. For me London is a nice change because it is so different to the rural area I live in Also visiting family as the reason to go there means I don't feel like a tourist, although I do find it it a really interesting city to explore.

NICE the people who approve drugs for use in NHS have to be satisfied by cost / benefit of these expensive treatments. NHS does not have limitless money. So the Cemiplimab immunotherapy I'm receiving can be taken for a maximum 2 years or treatment can be stopped before that if the drug stops working or toxic side effects become too great. The cost privately is £4600 + VAT per infusion. The NHS gets a discount so even if it is half price that's still around £50,000 per year. Then there is costs to administer it and review patients health plus 5 blood tests every 3 weeks another few hundred pounds. The Denosumab Xgeva  injections we both receive to protect our bones can be given for life, probably because the cost is around £200-£300 per dose. 

Well you should currently be soaking up the relaxed life on the Algarve, enjoy every minute.

Ed 

Hi Ed,  I did not know how much the treatment costs.  We are so lucky to have the NHS.  I know they are struggling but I have only good things to say about my treatment.  We got back from Praia da Luz on Saturday.  It was lovely, such great beaches.  We went to Lagos, Saleema, and Sagres too.  I love it there, already planning next holiday :}    When are you going to Brittany?  Hope you and Cosmopolitan are both doing okay.  My back seems to have got a bit more painful recently but still think I am lucky to be able to do the things I can.  Have oncology appointment next Wednesday, fingers crossed that all is still stable.

Lee x

Hi Lee

Nice to hear from you and that your enjoyed your holiday. in Portugal. We stayed in a room above a bar in Lagos once a long time ago, it is a very lively town and very noisy at night, great for young people but I prefer a quieter holiday now,. We are off to Brittany tomorrow on the Ferry from Poole we can share driving in short stints with back stretching breaks. Ive had an oncology appointment with good news from recent scan, no significant progression in bone and lung nodule stable. Immunotherapy ending soon but will continue with denosumab injections, periodic blood tests and CT scans. I hope all goes well for your appointment next Wednesday.

Ed 

Morning Lee and Ed glad to hear you are managing holidays abroad and that everything is stable.   Long may it continue as they say.  I am picking up my Ribociclib today and having Dennisamub.  Waiting for my appointment for next MRI scan for early October.   Always hate waiting for results.   Wishing you all the best.  

Hello cosmopolitan I hope you are managing your work and dealing with all that cancer brings. Ive had to cut down on the amount of physical work I do but still find it beneficial to keep back supple and muscles strong. Wishing you a good outcome from your MRI scan. Waiting for results never gets any easier no matter how many times you go through it. Nice to hear from you.

Ed

Hello Ed and Lee hope you are having a lovely weekend.  Feeling quite Autumnal this morning but lovely.   I wondered if I could ask how often you have your MRIs please?

Good morning Ed and Cosmopolitan.  I don't know if Ed will reply as he is in Brittany now.  I don't have regular MRI's .  I have the CT scans every three months.  I only have MRI if I say I have more pain etc.  Do you have them regularly?  Can't be long now before you go to Florence.

Lee xx

Hi Lee I have MRIs every 3 months at the moment as I have private healthcare.   But I am  nearly retirenent age although don’t want to give up totally but time will come and won’t be able to afford the premiums.  Think NHS are great when it comes to cancer but I know I will not be able to have MRIs that frequently and my Oncologist thinks once a year at most.  It’s a bit of a concern as obviously used to the extra checks.   Hope you are having lovely weekend.   Ed Hooe you are enjoying Brittany!   I go to Florence in 2 weeks and as usual worry about catching colds etc.  i will happily wear a mask on plane and trains.  

Hi Cosmopolitan, do you have a MRI and a CT scan every three months?  I just have a CT scan every three months.  Not actually sure if one is more accurate or better than the other.

Lee x

Hi Lee I get very confused with scans.  I have a full body MRI every 3 months. 

Hi Lee I get very confused with scans.  I have a full body MRI every 3 months. 

Hi Ed and Cosmopolitan.  Just wondering if either of you had the new denosumab injection yet, the synthetic one?  I got a letter telling me the new one was cheaper.  I had it last Monday and have had terrible stomach pains since then.  Don't know if it is a coincidence.  Hope you enjoyed Brittany Ed.

Lee x.  

Hi Lee had my Denosamub last Fruday and no mention of it being synthetic.  Certainly didn’t react   Is it still called XGEVA?   Will ask when I have next one in 3 weeks.   Hope Brittany was good Ed.  

Hi Cosmopolitan and Ed no it is not called XGEVA it is called  Jubereq. .  I am going to ask them if I can still have the XGEVA, but I doubt it.  Not long until Florence is it?  

Lee x