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,  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 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

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 Lee

Good to hear from you and I hope that the pain from your recent radiotherapy soon subsides. The mestastisis is just in my bones and spine plus small nodules in lung not spread to other organs. By cancer progressing I meant how it has gone from a mild back ache to being more painful. The immunotherapy and Denosumab are slowing cancer progress but not halting it. The oncologist has mentioned radiotherapy as an option and I knew both you and cosmopolitan were in for this treatment so I wanted to ask for your experiences. Ive had to postpone holidays until September due to hospital appointment schedules. One trip to Portugal and one to Switzerland (for mountain air not that clinic) planned. Enjoy making beer and cider but dont drink much of it these days friends and family are appreciative though. Hope your day is good and that your back brace gives you relief.

Ed

HI Cosmipolitan 

Ill keep my fingers crossed for you too for your MRI results. Im waiting for a MRI scan too to see in more detail what is happening to my spine and what if any further treatment is availablle. Possibly radiotherapy.

Ed

Hi Ed and Cosmopolitan.  How did your MRI go on Monday Cosmpolitan, its painful lying there for so long isnt it.  When will you get your results, fingers crossed.  Ed have you had a date for your MRI yet?  I know about the pain.  my pain went from being okay to being so sore without pain medication.  I am hoping that this radiotherapy starts working soon.  I am going to pick up the brace and get all the information about wearing it etc on Friday so will let you know if it works.  Never heard of anyone else having a brace.  I am worried about going through the scanner at the airport as it has metal rods up the back.  Be like the bionic woman :)   Hope you are both well. Big hugs.

Lee x

Hi Lee

Good to hear about how you are getting on. Hoping that the radiotherapy will give you some respite from pain and your back brace will help support your spine so good luck for Friday. No I do not know of anyone who has a back brace for cancer in the spine. Maybe worth a new post asking forum members for their experiences. Im sure that airport security will be able to check you over while wearing your brace. No date yet for MRI scan. Still waiting for radiographers report of CT scan from scan 3 weeks ago. Doctor has looked at scan and thinks there is no change to lesions on spine although the back pain is getting worse. Hope you are out walking your dogs today. 

Ed

Hi Cosmopolitan and Ed,  how are you both doing.  I am not too great at moment.  On antibiotics for respiratory infection was in hospital but now home.  Can't have my treatment today as neutrophils are too low.  We are going to Portugal tomorrow , Tavira Ed so will let you know how we get on.  My research shows it is nice and quiet which is what we like but with things to do and see.  I would like to see the Flamingoes in the saltpans.  Have you had any further news on radiotherapy Ed?  Hope your back is still feeling okay Cosmpolitan.  Hugs to you both.

Lee x

Hi Lee

I want to wish you a lovely well deserved holiday to Portugal. I guessed you had not been too great recently, cancer is relentless isnt it. I had two of my earlier treatments postponed for similar blood count readons. The doctor has decided against single dose radiotherapy for now. Still waiting for MRI scan appointment 4 weeks now! I think you will enjoy Tavira. There are boats on the river to takeyou out to Ilha deTavira for a couple Euros nice clean long sandy beach cafes etc. Theres lots of churches, a small castle worth the uphill walk for the view. A camera obscura interesting if you have not seen one before. A small museum with stuff from Portugals Islamic past. The saltpans on this side of the river are now disused but worth a look. Theres a market, shaded garden, plenty of choice of restaurants. A day trip to Faro is worthwhile you can get there by bus or local train 40 minutes. Of note are the Cathedral and there are boat trips out to the nature reserve. Hope the warm dry climate is kind to your back. 

Ed