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 Ed and Lee.  Good to hear from and glad you enjoying walks etc.  Must be a very difficult decision as to weather you stay or move to a beautiful area but as you say you are in a nice area  anyway so maybe just enjoy it rather than have upheaval. 

last dose of Dexamethasone yesterday and been tough ten days.  Hopefully will be out of my system soon as max two hours sleep a day is not pleasant plus all the other side effects.   

Plus I am sometimes very down but trying to keep busy which is difficult with fatigue 

I will complete my first cycle of Ribociclib and hoping to go away for a rest that weekend   Fingers crossed that the bloods from yesterday come back ok  good   Goidluck with your oncology this week  

 Hope   you both have a lovely bank holiday weekend

Hi cosmopolitan good to hear from you. So your trearment is continuing apace and sounds like it has not been easy.  we share fatigue as a common side effect and it is difficult to deal with each day with zero energy. Poor sleep plagues me too and I give anything for a whole nights sleep. Instead I wake at 3.00 am and try in vain to to go back to sleep. Getting out of bed tireder than when I turned in. I hope your planned weekend away will lift your spirits and you may get a better nights sleep. Wish you both a nice Bank Holiday weekend. Im praying for rain as the fields are scorched dry and grass on the top of neighbouring hills is starting to turn brown. Dryest spring I can remember.

Ed

Thanks Ed.  We are all in the same boat unfortunately but keep smiling!  Your posts inspire me.  

I Hope  you get the rain you are wishing for especially during the might!!

Good morning Ed and Cosmopolitan,  just wondered how you were both getting on.  I have had to stop the ribociclib due to me having a bad rash and sores.  Oncologist wants me to stop for two weeks to see if it heals.  I dont really want to change from Ribo as it has made my cancer stable.  Have another appointment on 23 July. to see and make decision.  Also have another MRI today on spine.  As had one two weeks ago and it showed the cancer pushing two discs into my spinal cord.  I am going to have to wear a spinal brace, going for a fitting on Wednesday.  Also I have to have radiotherapy for this.  He said it would be this week but not heard anything yet.  I am so worried about my back as he said it could snap very easily.  How are you both getting on?  I am still walking my dogs every day but not last four days due to the heat.  I am sending you both hugsx

Lee x

Morning Lee good to hear from you and pleased to hear that the Ribociclib is keeping the C stable    It is a harsh treatment and hope your sores heal and you can go back on it   I think I have had every side effect possible on it but keen to persevere if I can   Sorry to hear that your discs are pushing into cord and hope that radiotherapy helps.  

i had the radiotherapy quite early on to try and keep it away from chord and for pain too.   I have my MRI on  28th to see if treatment is working   This is quite scary as worried in case treatment not working but fingers crossed 

Glad you still able to walk your dogs and enjoy that.

hooe you are also ok Ed. X 

Hi Cosmopolitan.  I am having the radiotherapy on Tuesday.  How did you find that you got on with it.  I did have 20 sessions of it when I had breast cancer before just wondered if it was different when it is on your spine.  Good luck for MRI on 28 hope you also have a stable mable.

Lee x.

HI Cosmopolitan

Like you Im awaiting a scan and hoping my treatment is keeping it at bay. It is a scary time. Had 3rd dose of denosumab and continuing with cemiplimab. Tha adcal tablets have had an unexpected side effect in that my fingernails have never been so strong no splitting or breaking. A bit tired rash and feeling a bit mental at times. But able to do most things except sit down for any length of time it kills my back. Wishing your scan results are good news.

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 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