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

Had to smile at the "going to live my life to the full once I get out of bed" I too occasionally get up at the crack of half past eleven, usually having found a pain free, comfortable position which I don't want to leave. Yes it irks me too when I get the "you've got to stay positive" comments as if were not really trying hard enough to stay positive in the direst of times. Still you should be off on holiday soon, the most effective treatment known. Look forward to hearing from you on your return.

Ed

Hi Ed I am not sure if they are trying to avoid the situation or just in their own little world.  Really get frustrated when they moan about a minor ache!!!   Or they are not happy at work.  And as you say they always tell us that we are  so positive.   My answer to that is I am not going to curl up and die!!!   Keep smiling 

Hi Ed and Cosmopolitan,  hope you are both well.  I am okay and cancer is stable.   Went in on Monday to fetch my medication and have the denosumab injection.  When I got home I found a leaflet in my medication to say they had switched me from Denosumab Xgeva to Denosumab Jubereq.  This new one is a synthetic version of the original which is made from living cells.  This new synthetic one gave me a bad headache and stomach pains.  I just wondered if you both had been swapped to this.  Apparently it is cheaper.  (surprise surprise).  I also learned something else.  I had a visit from the local hospice, a specialist nurse.  She told me that if you are working and take sick leave this should not be counted on your record because it is cancer related.  It is not relevant to me but it might be for you both.  Big hugs to you both.

Lee x

Hello Lee and Cosmopolitan

Hope you are both getting on ok and enjoying life.

Scans on me show stable cancer and some healing of the bone fractures in my shoulder and spine. No spread to brain.  Good result or what.

I knew that that there were different versions of Denosumab but had not heard of Jubereq until now, sorry that it has given you adverse side effects. I've been taken off Denosumab XGEVA for a few months to minimise chances of getting necrosis of the jaw while I had a wisdom tooth extracted. Will resume in a few weeks time on a 6 weekly cycle, I'll let you know if they switch the version they give me. I tolerate XGEVA very well and would not like to change to a version that is not so well tolerated. Might be worth asking the clinic the reason for switching you to Jubereq, I know that the NHS is having problems sourcing many medicines so it could be a supply problem and Jubereq is the nearest equivalent.

The specialist nurses have a huge amount of cancer related knowledge outside of clinical expertise. I did not know that cancer related sick leave days should not be counted. This should be very useful to people reading your post. I'm still working (part time) but am self employed so it doesn't apply to me either. The hospices provide really valuable services outside of palliative and end of life care, the nurses who are out and about in the community really make a difference to peoples' wellbeing. They have helped me with odema and pain management using minimal drugs. They also attended my father keeping him comfortable in his last week of life in his own home. 

I hope you are still out walking your dogs daily Spring has sprung.

Ed

Hello Lee and Farner Ed good to hear from you and that you are both doing well.  Long may it continue.  I had my Denosamub this morning and it was XGEVA.   It is wrong that they have changed yours Lee and having to put up with the extra side effects.  

I also had my quarterly MRI this morning and hoping that I am still stable and Ribociclib still working.  Fingers crossed as we wait to hear!  

it is interesting and thanks for sharing information on being protected from leave as I actually had to point this out to my HR dept.  I am back on phased return abe feel that I can only work 3 days but certainly contribute more than the full time colleague!!!  What they do not appreciate is what we are having to go through both physically and mentally.

Hope you enjoy your weekend and keep strong.  

Good morning Ed and Cosmopolitan.  Hope you are both still stable.  I am glad that you have had no spread to the brain Ed. Long may our Stable Mables continue.  I admire you both for continuing working.  When I used to work I got up at 4.30 every week morning with my husband.  Now I only wake up at about 8.30.  I do seem to get more tired than before.  I am still walking my four dogs every day in the woods.  Did not walk them when it was so hot and put on 2lbs :) .  Now we have gone from drought to floods here in the Midlands.  How are the crops doing in this weather Ed?  I bet food is going to be even more expensive than ever.  We are going to Praia da Luz on Wednesday.  Looking forward to it.  What trips have you both planned, I know you do lots of trips Ed.  Anyway just wanted to say hi to you both and hope you are doing well.  Big hugs to you both.

Lee xx 

Hi Lee good to hear from you and pleased to hear you are still taking those lovely trips abroad.   I did go to Menorca but bloods are always a worry as they always drop considerably but they do go just enough for treatment time.  Off to Norfolk next week snd hoping to go to Florence in October.   I am just careful with masks etc when on planes and buses   How are you Ed hooe all Ok with you too.   Keep stable everyone and enjoy this bit of rain.  

Hello Lee 

What a nice surprise to hear from you. Its good to know that you are getting on with and enjoying your life and overcoming the limitations that cancer inevitably brings to us. I do still work but on my terms as fatigue gets to me and like you the cancer in my spine brings physical problems and pain. However work is a therapy for me and keeps me fairly fit. As you know the importance of exercise having gained those few extra pounds when you couldn’t walk your dogs. The drought has been a disaster for farmers this year the worst I've known, even my small kitchen vegetable garden has suffered badly. You rightly surmise that food will be more expensive. We've got a trip to Brittany in France planned and a trip to London to visit Family and do some sightseeing. I can only travel for short periods sitting down as my back aches too much. Portugal would be my limit flying. The Denosumab seems to be keeping my spine in good shape but my immunotherapy is coming to an end soon as Ive nearly reached the 2 year limit (and £100,000 of NHS funds). I hope that the Oncologist is correct that the Cemiplimab will continue to have an enduring effect on my immune system's ability to fight cancer even when treatment ends. It has been a life changer, giving me a good quality life. Privately it costs £5000 per 3 weeks so out of most peoples pockets short of remortgaging house and everything. Ive caught snippets of your trip to Iceland on this forum and McMillan sounds great place to visit. Enjoy your trip to Praia De Luz, I love Portugal.

Ed

Hi both.  glad you got to Menorca Cosmopolitan and hope you get to go to Florence.  I have never been but heard it is beautiful.  I don't wear masks at all, never really thought of it.  I didn't know that there was a limit to the treatment/cost of our cancer treatments Ed, nobody has mention it to me before.  I know oncologist had to apply for funding tor the targeted therapy.  Yes I think Portugal is the limit for flying for me too.  I wanted to go to South Africa but the only way I could fly would be business class so I could lie down.  The price would be £12 000 for my husband and myself.  Well who can afford that?  Yes Iceland was amazing and the Northern Lights spectacular.  (It's a pity we can't post photos on here like the Macmillan site.)  We have been three times I love the place but it is very expensive there.  I love Portugal too and loved Tavira.  I haven't' been to London for ages, I find it too peopley.  

Lee xx

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 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 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.