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

Good morning Ed and Cosmopolitan.  I am glad you enjoyed family time Ed and I think it would be better to get the train or let someone else drive.  Mind you I find that even sitting in the car for an hour and half is painful when my husband is driving.  I am sorry that you are waiting so long for your bone biopsy results Cosmopolitan, I think mine came in two weeks.  I am having my sixth denosumab on 9 May as well and then have an MRI in the afternoon (found a lump in leg).  I was offered radiotherapy as a palliative treatment for pain but I understand this can only be once so I am holding back until pain becomes too much.  Are you having one dose Cosmopolitan or more and have you been offered this Ed.    I have really been enjoying the sunshine and we have been having a few BBQ s.  Last two days I have been very nauseous and Wednesday night was very sick.  Today feel lots better so off to the woods I go with the doggies.  Have they started you on any tablets Cosmopolitan yet, I take Ribociclib three a day for three weeks and then one week off.  I wish you both a sunshiny day x

Lee x

HI lee

I think that train is probably best way to travel longer distances as you can get up and have a walk if you get too uncomfortable. Sorry to hear you are having a lump in your leg investigated. I hope it is something benign.  I have not been offered single dose radiotherapy as the cancer has not yet progessed to that stage.Enjoy the spring sunshine and a walk with your dogs hopefully your nausea has subsided. We are off for a woodland walk later where the bluebells should be in bloom. Need a bit of cheering up after one of those down days.

Ed

Hi Ed,

My nausea has gone today, have a week off from Ribociclib (yippee).  Enjoy your walk the bluebells are out in full force in my woods.  Hope you have a better day.

Lee x

Good morning Ed and Cosmopolitan,  I just wondered how you were both doing?  I am on sixth cycle of treatment now and this treatment my horrible rash has not come back for which I am very grateful.  I have oncology appointment on Wednesday 28 May and am always apprehensive, luckily my husband is coming with me.  Hope you are both well.  My husband and I were going to move back to South Africa this year, bought a house there two years ago.  You have to have private medical insurance over there which we took out last year.  Now I am wondering if it is such a good idea as it will be a massive upheaval and to get our four dogs over there will probably be about £8 000 .  Beside which we live in a nice quiet area here next to a canal, railway walk and of course my beloved woods.  Its a very hard decision as we have lived in UK  for 26 years now.  They do have good health treatment over there but as I say you have to pay for it.  Anyway not sure what we are doing today as it does look like it is going to rain.  Have a good day both of you.

Lee x

HI Cosmopolitan I hope that youve finally managed to get all your test results and have a treatment plan in place now. Hi lee good to hear from you. Im glad to hear that your rash has calmed down on this treatment cycle. Moving back to South Africa sounds like a big upheaval in the midst of all that you are going through right now. But I know how you feel wanting to be at home in SA. After 26 years a lot will have changed. Wish you al the best whatever you decide to do. It looks dry here today with welcome rain tonight everything is so dry now.

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 

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 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