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 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 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

Morning Ed,  we got back from Tavira yesterday.  We didn't stay in Tavira itself but the cabanas Tavira which is right on the beachfront.  We went into Tavira itself twice and it was so lovely.  I did enjoy being cancer free for a week and my back was absolutely fine on the flight.  Thank you for your recommendation, will definitely go back there as more to see than Praia da Luz which I also liked.  We saw flamingoes on the saltpans.  Our next planned trip is to Iceland in February, been twice before and love it there.  Cant wait to float in the hot thermal water at the Blue Lagoon.  Have you had a date for your MRI yet and did doctor tell you why he decided not to do radiotherapy?  Mine put it off for a few months.  You are off soon aren't you?  Take care Ed.

Lee x

Hi Lee

Your holiday to Portugal sounds wonderful. Ive not been to Cabanas but the beaches along that whole stretch are beautiful. To be able to forget about of cancer for a week makes it all so worthwhile. We are off to Lisbon, Sintra and Coimbra next week after my treatment.  Then a few days on the Algarve. Plenty of stops to straighten my back. Had MRI and awaiting results. Doctor decided to take a wait and see approach for single dose radiotherapy to one of my vertebrae. As cancer is currently stable. Althogh pain is a bit worse. Iceland sounds an adventure especially mid winter something to denitely look forward to. Nice to hear from you.

Ed

Hi Ed and Lee glad you are enjoying holidays.    Apologies have been rather busy lately.   Treatment going ok although have had to miss two lots of Ribociclib due to bloods being rather low.  my Oncologist  now decided to reduce the dose so that this does not keep happening.    First MRI was quite positive results and have a further one on 2nd Oct.  I was advised against flying due to risk of infections as bloods so low so we have had a few breaks in this country.    Although I am desperate to cross the pond!    Will see how I get on with reduced dosage.   Enjoy your holidays 

Hi cosmopolitan good to hear from you. Your oncologist sounds clued up and actively monitoring your treatmemt and making adjustments where neccessary. I had 2 treatments postponed in the eatly stages due to blood tests not right but seems to be ok now. Have taken several short summer UK breaks. Allowed to fly but insurance always problematic. The immunotherapy and denosumab is working well and no progression visible on last CT scan but awaiting more detailed MRI results. Like everyone here good days and bad days but enjoying the good ones to the utmost. Hope you blood counts normalise and you get to make your trip acroos "the pond".

Ed

Thanks Ed.   I have to say my Oncologist is superb and actually treated me for my original cancer 14 years ago.   Hopefully everything will settle down soon as certainly coping with the medication so much better than a few months ago when I started.   as you say good days and bad ones but certainly making the most of each day.  

hope your cancer is kept under control for years to come.   

Hi Ed and Cosmopolitan,  good luck with treatment next week Ed and enjoy your holiday.  Cosmopolitan I had to have my Ribociclib reduced to 400mg a day as well so hopefully we will both benefit from this.  My neutrophils are very low as well but oncologist said I could go on holiday which was great.  Hopefully if yours pick up Cosmopolitan you will be off abroad on your hols as well.  Ed did you get a quote from Insurancewith because I found them very reasonable.  Lets hope we all have stable mables for many more years to come.  Big hugs.

Lee x

HI Lee

Can I ask you if you get pain in other areas from the cancer in your spine and not just in the spine area. Ive got pain on the lower edge of my rib cage the scan shows no cancer there and no broken ribs. The doctor suggests it is referred pain from the affected vertebra. I am also getting tingling in my shoulder blade and numb fingers from time to time. Had a lovely week away to Portugal temperature mid 20s perfect. Feel so much better for a break away. Hope all is well with you.

Ed

Hi Ed,  so glad you enjoyed Portugal.  I loved it and will definitely go back.  Did you manage to get insurance?  I get pains in my collar bones and upper arms  (I have a feeling that it might be the way I sleep)  and recently having been having really bad pins and needles down my left arm into my fingers.  I haven't got rib pain although I do have mets in my ribs as well.  Before I had the radiotherapy I got pains in my shoulder blades terribly if I lifted my right arm but onc says it was from the tumor on spine.  The spine controls so many nerves in our body.  Hope you feel better , have you still managed to steer clear of the opioids?  Big hugs.

Lee x

Hi Lee

Thanks for replying it would seem that you also get pain in other areas but it originates from your spine. So what my doctor says fits in.  I got a quote on the telephone from Insurancewith whereas online they declined to quote. I didnt bother having insurance in the end and took the risk myself. I cannot get comfortable in bed which leads to aches and pains the following day. Cannot find the correct pillow too high too flat too hard too soft for my neck and head. Still on paracetamol and Naproxen but have been offered strong painkillers if needed. Tramadol or oramorph but holding off as opiod painkillers give me constipation itchy skin and nausea plus make my thinking dull. Take good care and hope you are still able to get out with your dogs to enjoy the early Autumn sunshine. 

Ed