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

All the best for your upcoming radiotherapy I hope it will give you some relief and make it possible for you to get your break to Portugal. 

Ed

Hi Ed and Cosmopolitan.  I wish the adcal made my nails stronger, they are soft and have ridges in them and keep splitting.  Do you know what is causing your rash Ed, I had to stop my ribociclib because of the rash/sores.  They seem to be a bit better but I dont want to stop the ribo as it seems to be working for the cancer.  I have tried all types of creams for them.   I see oncologist on Wednesday.  We haven't book Portugal yet, leaving it to last minute as things are so uncertain and change daily.  How are your crops doing with the dry weather?  Big hugs to you both.

Lee x

Hi Lee

What a shame you have had to take a break from the Ribociclib due to rash. Ive found I can control the rash caused by cemiplimab by using barh oil instead of soap and daily E45 anti itch cream orr the Balneum equivalent which if you ask nicely can be got on prescription. Plus a steroid cream when needed. Ive cancelled a couple of planned trips due to hospital appointments and I find sitting down for any length of time uncomfortable The drought has been very bad for UK farmers grass fields are brown crops are withering and dying. Food will be expensive this winter as Europe has also been hit with drought. My vegetable garden though is OK as I can put water on it. Getting results of scans next week a bit apprehensive. Hope your trip to Portugal goes ahead. I also want to go there I think the 2 hour flight there would be manageable with a few painkillers. Returning the virtual hug

 Ed

Hi Cosmopolitan

I hope that you are getting on Ok. Id like to ask how the radiotherapy to your spine went. Was there increased pain immediately afterwards and has it since given you any benefits. Ive been offered radiotherapy but first must get an MRI scan. I think Lee was also offered the treatment but has put it off till a later date. Wishing you and Lee the best.

Ed

Hi Ed hope all is well.   I did have Reactionary Edema which gradually got worse and had to call 111.   They were of no help but Oncologist acted immediately the next morning and gave me 10 days Dexamethasone steroids which worked brilliantly.  Apart from all the side effects especially when I came off them the pain was almost non existent from day one.

i have  a little pain now but it feels more like a pulling effect which has been explained to me that it is the tumour which is understandable.  Sometimes I wonder if I try and do too much but I like to keep active.

my back is still a little itchy from the radio and have a slight red square where they zapped it and it was one big dose.   Definitely found it beneficial and would recommend if offered.

Let us know how you get on.  

Hi Ed and Cosmopolitan.  I had my radiotherapy yesterday at 11.00.  The radio didn't hurt at all but boy was I in agony yesterday afternoon and last night.  I took tramadol and morphine it was terrible.  Today it is painful but not as bad as yesterday.  Hopefully in the long run it will help, did it shrink your tumor Cosmopolitan?  I am now waiting for my spinal brace to arrive.  I see oncologist this afternoon.  Hope you are both doing well.  Big hugs.

Lee x

Thank you Cosmopolitan and Lee for your informative replies I am taking my cue from both of you as you are ahead of me. I am surprised how quickly the cancer is progressing. Based on both your experiences I will go with the oncologists recommendation to have the radiotherapy treatment if needed. I will request strong pain relief given your experience Lee and be prepared for Odema. Given that one in three people with metastatic cancer end up with it affecting their spine there does not seem to be many posts about it. Im busy bottling some cider I made in the Autumn it is a beautiful gold colour clear and quite dry. 

Ed

Hi Ed and Cosmopolitan,  Ed have you had a further spread of cancer or do you mean because it is in your spine already?  I do worry about it spreading into the organs but hopefully the treatment will make it stable and stop spreading.  I am still in pain from the radiotherapy.  I saw oncologist yesterday and he said it will first inflame the tumor and then it will start to get better.  From what Cosmopolitan said she can recommend it so thats good news.  I hope you enjoy your cider, it sounds wonderfully refreshing.  We are still making our own wine.  Take care both of you, any holidays planned soon?

Lee x

Hi Lee and Ed I have my full body MRI thus Monday and that will confirm if radio and the Ribociclib are helping in shrinking and keeping my cancer stable.   Fingers crossed as a little bit daunting as to what the news may be.

Cider sounds good Ed but I am not drinking at all not that I was a drinker before.  I was born in Cider Country!  Enjoy your wine Lee

Hi Cosmopolitan,  Good luck for Monday it is a very anxious time waiting for scans and the results.  Good luck.

Lee x

Hi Cosmopolitan,  Good luck for Monday it is a very anxious time waiting for scans and the results.  Good luck.

Lee x