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

Im relieved to hear you are just having a well deserved lie in. I hope you managed to get out to  walk your dogs. For the first time in months I slept all night 7 hours. A good day today.

Ed

Hi Ed,  is it today you have the injections?  I want to wish you luck and also to say enjoy your time with family.  Hopefully you get some more good nights sleep.

Lee x

Hope you all had a good weekend.  Would like to join Lee in all the best with  your injection   Enjoy family time 

Thanks both lee and cosmopolitan for you kind thoughts. I get my regular treatment plus the Denosumab tomorrow. Not worried about the injection due to your positive feedback about it. Will give it a day to make sure there are no adverse effects then visit family driving with frequent breaks to stretch back and legs and rest. Hope you are both getting on ok.

Ed

Hi lee and cosmopolitan. Demosumab injection went ok with no problem side effects as of now. Thanks for your support and reassurance I did have slight anxiety about having it. Usual fear of the unknown type stuff. Hope you are both getting on with and enjoying life to the best.

Ed

Good morning Cosmopolitan and Ed.  I am so glad that the injections went well.  Hopefully you dont get any side effects.  Are you going to visit your family tomorrow?  Have a safe journey and enjoy precious family time x  Cosmopolitan I was just wondering what treatment you are having?  Hope you both have a good day.  Sun is shining here, going to walk my dogs in the woods in a bit.

Lee x

That’s good to hear Ed and long may it continue.  Enjoy your family time.  Speak soon 

Morning Lee and Ed hope all Is good with both of you.   Just realised I did not press send yesterday so apologies Ed!   I am still waiting for final results of bone biopsy which is taking y so long.  Been over two weeks and this waiting around is not good for us.  I am going to follow up again and hope to move on to the next part of treatment.    Keep well 

Hi Cosmopolitan,  where did you have the bone biopsy,  I had mine in my pelvis, they went in through the bottom of my back.  It is certainly one thing I never want to go through again.

Lee x

Hi Lee they did it on my vertebrae where the actual tumour is.   As you say very painful.   However would rather have that again than keep waiting for the results.   This is mentally painful!   Have a good day all 

Hi Lee they did it on my vertebrae where the actual tumour is.   As you say very painful.   However would rather have that again than keep waiting for the results.   This is mentally painful!   Have a good day all 

Hello Lee and Ed.  Hope both well.  Ed I wondered how you are tolerating the Denosumab? Hope you are having lovely time with family. I have my second dose booked for Friday 9th.  I am absolutely exhausted and wondered if this is from injections/Letrozole or the whole thing!   Still waiting for final biopsy results which is probably contributing to the way I feel and have radiotherapy booked for Tuesday.  Lots going on I know and feel a bit overwhelmed at times.  Enjoy sunshine.  

Hi Cosmopolitan

Seems like fatigue is one of the downsides of Denosumab but as you point out, it could for you also be the Letrozole and for me cemiplimab, or a combination of both plus of course the ongoing cancer with its own challenges of pain, stress and anxiety. It will be a relief getting those biopsy results, as every single person on this forum comments how waiting for test results is the worst bit. At least when you know them you can move forward with your treatment plan. Had a wonderful time with family and popped in to see a few friends too, for a while this awful disease was vanquished. Id take the train for a similar journey next time as a 4 hour drive is fairly arduous when you cannot get comfortable even with hourly breaks for a stretch. I hope the radiotherapy session gives you some relief and the current fine spring weather lifts your spirits, I can see lee out walking the dogs every day making the most of it. 

Ed

Good to hear you had a good time Ed.   Keeping busy is very important as it feels we can park this journey!  Thanks for your kind words.   Hope you enjoy this good weather too

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