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,  I read on another post that you sometimes get gout.  My husband has suffered terribly with this.  He takes cherry extract capsules twice a day and if he feels gout flaring up, drinks plenty of cherry juice.  I must say this has almost stopped the gout completely.  I just thought I would tell you as my husband says gout is the most horrible pain ever.   I suppose if you wanted to try, you would have to ask oncologist first.  I am doing very well and the mattress and pillow have helped a lot.  I have a CT scan tomorrow and oncology appointment on 14 January.  I am going to put the Christmas decorations up today.  My niece, her husband and two daughters are coming to us for Christmas so will have little children in the house.  Hope you and Mrs Ed have a great Christmas.  Hope you are doing well Cosmopolitan and have a good Christmas too x

Lee x

Morning Lee and Ed 

great to hear you are doing well Lee and hope it continues.   Sorry to hear you have painful gout Ed and hope it sorts itself out.

i am doing ok and have a CT scan in January and hope that the cancer is still stable.  

Hone you all have a great Christmas x

Cosmopolitan

Hello Lee

Nice to hear from you and that you are living life with cancer and all its impairements to the full. The cancer in my bones is being held in equilibrium by the immunotherapy and denosumab. I'm going to have a scan on my head as I've recently been getting migraine headaches, the flashing lights and greyed out vision type but without headache. Never suffered from headaches until now. My Oncologist says that they could be caused by the immunotherapy as there is more evidence arising that immunotherapy can cause neuorological side effects. I'm just hoping that cancer has not spread to my brain, however the mantra one day at a time still applies and I will cross that bridge if the day comes.  I hope that your scan shows good results, it is always an extra layer of stress awaiting the results.   

The post I answered to LcHawkhead54 worried that pain in big toe could be cancer (and it could), was that having suffered gout attacks myself the symptoms described were exactly that of gout especially the excruciating pain (caused by the sharp needle like uric acid crystals in the joint) plus the fact their GP had taken a test for uric acid.

I do get occasional gout attacks last one about 6 months ago, always in same big toe. I also have hit on cherries as both a preventative and partial cure along with the usual anti inflammatory Naproxen. I drink a small glass of cherry juice every day and eat cherries when they are available. Also I keep well hydrated, I moderate alcohol (esp red wine) red meat and shellfish not hard to do as they are so expensive. I don't get attacks frequently enough to take allopurinol, which I'm told is very effective. 

We have a tree, first time in years and Chritmas decorations.Our children and small people will visit Boxing day. Looking very much forward to it. Wishing you and your family a lovely time over Christmas.

Ed

Hi Cosmopolitan

Good to hear from you and I hope your return to work has gone smoothly and you are enjoying life. Also hoping that your forthcoming scan shows that your cancer is on hold. For me cancer is being kept at bay mostly, a slight increase in back ache but still enjoying life to the full. I also still do some work (3 to 4 hours daily) as Ive worked since 15, it helps me keep fit and with a semblence of normality, which in turn keeps me sane and not dwelling on cancer.

I don't have gout at the moment, it was a post by LcHawkhead54 that led me to reply to them that their symptoms were classic indicator of gout, having experienced them myself. 

Wishing you a lovely Christmas 

Ed

Hi Ed.  I am sorry to hear about your migraines.  I hope it has not spread too, when are you having the scan?  Hopefully it is from the treatment and will disappear soon.  Glad that you have found cherry juice helpful as well.  I think if we can find natural things that help, all the better.  I am glad that you find meditation helpful, I used to do it but haven't now for a long time.  I have seen a saying or a thought it is about living in the moment and not to worry about the past which can't be changed and not to worry about the future as it hasn't happened.  Last night I woke up and tried to just think about the moment.  The pillow, my dogs and husband snoring (ha ha)I.  It worked I went back to sleep.   Have you tried silk pillowcases, they are brilliant, so cool and smooth I use them all the time now.  Blissy are the best but quite expensive.  I am glad you have put up tree and decorations.  First time we have done it in ages (had to have a glass of Prosecco to get through It).  It will be a good Christmas for us all.  Please let me know about the migraines and scan when you can.  Big hugs.

Lee x

Thanks Lee

Needs little excuse for a glass of Prosecco and the effort of putting up a Christmas deserves one. Will investigate the cool pillow cases, anything that improves sleep quality is worth it. Hope you can get out early with your dogs before the rain sweeps in. Scan is not scheduled yet due to Christmas and the Doctors strike so something to look forward to in the New Year. HaHa. I'm pretty sure the silent migraines are stress related. Ive had a lot stress recently with family matters and finances. Cancer unbelieivably is the least of my problems. Always good to hear from you.

Ed

Hi Ed.  I hope that you and your family had a great Christmas.  We did other than the oven breaking down on Christmas morning ha ha.  I was thinking of you and wondering how the migraines were and have you had your scan yet?  I am doing okay just more back pain so waiting for another spine MRI and nuclear bone scan.  Hope your stress has eased now.  We are going to Iceland in 3 weeks so looking forward to floating in the Blue Lagoon.  Hoping it will help my back.  Big hugs.

Lee x

Hello Lee

Lovely to hear from you, so pleased that you had a great Christmas, we did too, to be honest 15 months ago I did not think I would be celebrating this one, But thanks to all the wondereful staff at our hospital and immunotherapy treatment, here I am still alive and kicking and annoying the tish out of everyone. The back pain really is a thing with cancer in the spine, you are a bit ahead of me in progression of the disease, with a back brace and radiotherapy to the spine. You have given me a lot of valuable tips and insights on how to deal with it, for which I'm really appreciative. I find keeping active and stretching my back beneficial and Im still managing on mild painkillers but generalised backache is becoming more intemse with pins needles and numb fingers, arm and hand. Have not had the retinal migraines for a while and think they may have been stress related, however ive been referred to Neurology to rule out it is not immunotherapy or cancer related and have MRI head scan and CT body scan at end Jan. You upcoming trip to Iceland should be a great tonic, the thermal blue lagoon sounds fantastic Hopefully you can get up for a walk about during the flight. For us also a trip to a cold country Switzerlandand. In the planning stage somewhere warmer in Spring plus a few short city breaks in UK. Got to get these trips in while health still allows it. Good wishes for your scan results and a Big virtual hug to you too.

Ed 

Hi Ed so glad to see you are still planning holidays, it is nice to have something to look forward to.  Haven't been to Switzerland for about 35 years.  I just wanted to tell you about a cancer charity called Penny Brohn.  They do online zoom courses for stress, breathing, nutrition, gentle movement.  It is all free as is a charity, you can make donation if you wish.  I did a four week course, one day a week.  Going through cancer treatment.  It was really good and I got something out of each session.  I am now doing clinical hypnotherapy once a week with them on a Thursday.  It is so relaxing and eases my stress.  I just wanted to tell you about it incase you wanted to give it a go for your stress.  Big hugs.

Lee x

Hi Lee

Your proactive stance to living with cancer gives you the best life possible. Thanks for the info on the Penny Brohn charity.they seem to offer a lot of support in various ways and I may give a try.. Ive never suffered with stress before. Im not sure if it is the treatments affecting my endocrine system or just not having enough energy to deal with the normal setbacks that life brings. Family squabbles, money, plus friends keeping their distance because they are uncomfortable being around someone with cancer. Whereas living with cancer is the least of my worries. Going for a walk today then Sunday lunch at the pub. Hope you are keeping well.

Ed

Hi Lee

Your proactive stance to living with cancer gives you the best life possible. Thanks for the info on the Penny Brohn charity.they seem to offer a lot of support in various ways and I may give a try.. Ive never suffered with stress before. Im not sure if it is the treatments affecting my endocrine system or just not having enough energy to deal with the normal setbacks that life brings. Family squabbles, money, plus friends keeping their distance because they are uncomfortable being around someone with cancer. Whereas living with cancer is the least of my worries. Going for a walk today then Sunday lunch at the pub. Hope you are keeping well.

Ed

Hi Lee and Ed glad to hear you are both pretty active and trying to enjoy life. I also try and keep busy and working part time at the minute as need some normality albeit sometimes very difficult.  It is interesting as I find the same that some friends find it difficult, probably more than I do!   This I found quite upsetting at first but then realised who really cares about our friendships…….  Plenty of friends who do not have to tip toe around me.  

Enjoy weekend and live life to full.

Hi Ed and Cosmopolitan.  I do admire you both for carrying on working.  I miss my job but know I couldn't do it now.  Funny I have not found any friends that keep their distance.  I have told them all I just want to be treated the same and carry on as normal.  I have just read an article on the Macmillan website about toxic positivity.  Really interesting and yes I do agree I hate it when people say 'You got this or stay positive'.  Now just realise they don't really know what to say and maybe say it to make themselves feel better.  I am finding the clinical hypnotherapy once a week with penny brohn is really helping me with stress. I grind my teeth at night and get worked up and am so much better since doing this.  Going to live my life to the full once I get out of bed :) .

Lee x

Hi Cosmopolitan

Good to hear from you. The work thing is important to me too albeit part time now. The physical exercise in my job is beneficial, the dreaded paperwork keeps my grey matter engaged and contact with people is essential for wellbeing. The stay away friends aspect is intriguing, is it a belief that cancer is contagious, or that you can't be fun and a laugh anymore because cancer is so serious and miserable. Or is it just because cancer makes for difficult conversation. I tell people to treat it as if I had broken my leg.. (ask how's your leg mending) then get on with normal interaction. I usually have very dark humour around the subject which my closer friends can appreciate but others recoil from. Enjoy every day even the ones that don't always go well.

Ed

Hi Lee

Had to smile at the "going to live my life to the full once I get out of bed" I too occasionally get up at the crack of half past eleven, usually having found a pain free, comfortable position which I don't want to leave. Yes it irks me too when I get the "you've got to stay positive" comments as if were not really trying hard enough to stay positive in the direst of times. Still you should be off on holiday soon, the most effective treatment known. Look forward to hearing from you on your return.

Ed

Hi Ed I am not sure if they are trying to avoid the situation or just in their own little world.  Really get frustrated when they moan about a minor ache!!!   Or they are not happy at work.  And as you say they always tell us that we are  so positive.   My answer to that is I am not going to curl up and die!!!   Keep smiling 

Hi Ed and Cosmopolitan,  hope you are both well.  I am okay and cancer is stable.   Went in on Monday to fetch my medication and have the denosumab injection.  When I got home I found a leaflet in my medication to say they had switched me from Denosumab Xgeva to Denosumab Jubereq.  This new one is a synthetic version of the original which is made from living cells.  This new synthetic one gave me a bad headache and stomach pains.  I just wondered if you both had been swapped to this.  Apparently it is cheaper.  (surprise surprise).  I also learned something else.  I had a visit from the local hospice, a specialist nurse.  She told me that if you are working and take sick leave this should not be counted on your record because it is cancer related.  It is not relevant to me but it might be for you both.  Big hugs to you both.

Lee x

Hello Lee and Cosmopolitan

Hope you are both getting on ok and enjoying life.

Scans on me show stable cancer and some healing of the bone fractures in my shoulder and spine. No spread to brain.  Good result or what.

I knew that that there were different versions of Denosumab but had not heard of Jubereq until now, sorry that it has given you adverse side effects. I've been taken off Denosumab XGEVA for a few months to minimise chances of getting necrosis of the jaw while I had a wisdom tooth extracted. Will resume in a few weeks time on a 6 weekly cycle, I'll let you know if they switch the version they give me. I tolerate XGEVA very well and would not like to change to a version that is not so well tolerated. Might be worth asking the clinic the reason for switching you to Jubereq, I know that the NHS is having problems sourcing many medicines so it could be a supply problem and Jubereq is the nearest equivalent.

The specialist nurses have a huge amount of cancer related knowledge outside of clinical expertise. I did not know that cancer related sick leave days should not be counted. This should be very useful to people reading your post. I'm still working (part time) but am self employed so it doesn't apply to me either. The hospices provide really valuable services outside of palliative and end of life care, the nurses who are out and about in the community really make a difference to peoples' wellbeing. They have helped me with odema and pain management using minimal drugs. They also attended my father keeping him comfortable in his last week of life in his own home. 

I hope you are still out walking your dogs daily Spring has sprung.

Ed

Hello Lee and Farner Ed good to hear from you and that you are both doing well.  Long may it continue.  I had my Denosamub this morning and it was XGEVA.   It is wrong that they have changed yours Lee and having to put up with the extra side effects.  

I also had my quarterly MRI this morning and hoping that I am still stable and Ribociclib still working.  Fingers crossed as we wait to hear!  

it is interesting and thanks for sharing information on being protected from leave as I actually had to point this out to my HR dept.  I am back on phased return abe feel that I can only work 3 days but certainly contribute more than the full time colleague!!!  What they do not appreciate is what we are having to go through both physically and mentally.

Hope you enjoy your weekend and keep strong.  

Good morning Ed and Cosmopolitan.  Hope you are both still stable.  I am glad that you have had no spread to the brain Ed. Long may our Stable Mables continue.  I admire you both for continuing working.  When I used to work I got up at 4.30 every week morning with my husband.  Now I only wake up at about 8.30.  I do seem to get more tired than before.  I am still walking my four dogs every day in the woods.  Did not walk them when it was so hot and put on 2lbs :) .  Now we have gone from drought to floods here in the Midlands.  How are the crops doing in this weather Ed?  I bet food is going to be even more expensive than ever.  We are going to Praia da Luz on Wednesday.  Looking forward to it.  What trips have you both planned, I know you do lots of trips Ed.  Anyway just wanted to say hi to you both and hope you are doing well.  Big hugs to you both.

Lee xx 

Hi Lee good to hear from you and pleased to hear you are still taking those lovely trips abroad.   I did go to Menorca but bloods are always a worry as they always drop considerably but they do go just enough for treatment time.  Off to Norfolk next week snd hoping to go to Florence in October.   I am just careful with masks etc when on planes and buses   How are you Ed hooe all Ok with you too.   Keep stable everyone and enjoy this bit of rain.