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,  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

Hi Ed,  I had my three months CT scan yesterday and I couldn't lift my arms and hold them straight up over my head.  That is something new.  The onc drew a map of spine and showed me what vertebrae's controlled what nerves and I think one of the tumors is pushing on the nerves for my arms.  Anyway that is my guess. I have just bought a new orthopedic mattress to see if it helps.  Just a question have you tried the udderley smooth cream, I found it is good for the rash.  I am still walking my dogs every day and I enjoy the woods when all the leaves are turning colors, it is so pretty.  Take care and big hugs.

Lee x

Hello lee

I also find it difficult to put arms up in the CT scanner but can manage it. I always worry about the canula and tube for the contrast being ripped out. Im sorry that you had to find out about your reduced mobility during a CT scan. After reading your post confirming that referred pain is a regular occurence and that you were shown what nerves are controlled out of each vertabrae. I had a look online and found that one of of my affected vertabrae T7 does indeed affect area of lower rib cage. Whilst the T3 vertabra would be causing the numb arms fingers etc and the pins needles tingling sensations. So a quick lesson in anatomy thank you for promptng it. I have not tried the udderly smooth cream which was developed from a cream for cows udders. I used to use a cream called Cai-pan mint cream which contained Japanese peppermint oil for cracked teats when milking the cows. I noticed that it was very good for my own dry chapped hands. At the agricultural supplies store its around £ 27 a litre I may buy some plus Ill try the human version. Hope your new mattress gives you a better nights sleep. Sending you all my best.

Ed

Hi Ed and Cosmopolitan,  I though I would reply on here Ed as didn't want H Tam to think we had hijacked her thread.  I bought my pillow from Ikea.  You can also get them on Amazon or Ebay.  It is memory foam and has a raised edge on both sides, one being higher than the other.  The higher one is for side sleeping and the lower one is for if you sleep on your back,  It has helped me as before I tried two pillows then three.  This I use on top of one pillow and seems to work.  I am glad you enjoyed Somerset, I have never been.  It is hard going away when you have four dogs.  You have to book a dog/housesitter like a year in advance. I hope you are doing well Cosmopolitan.  We are hoping to go to Iceland in Jan/Feb again depends if we can get dog sitter and of course health and treatment.  I have want to lie in the hot thermal waters of the Blue Lagoon.  We have been twice and really love it.  Sending you both hugs.

Lee x 

Morning Lee and Ed sorry not been online much lately.  Sometimes need to get away from the C and try and hide but I am back at work on a phased return as being at home too much is not for me   

Glad you are both having holidays.    My oncologist is worried about DVT if flying so am not going very far these days.   Using trains and ferries but these can be just as bad with all the germs going around

information from you both is great and I also use the MOO creams.   Having sane symptoms as yourselves with tingling and numbness but we carry on.   

Take care and enjoy life! 

Hi Lee

Thank you for the info on the pillow Ill get one to try out and let you know how I get on with it. Did too much physical stuff yesterday and paying for it today with painful back and ribs Four dogs is quite a handful to look after and arranging a holiday must take a bit of planning. Iceland sounds a fantastic place hope you can get there in Spring. The thermal waters will ease your back. Roasted a butternut squash today will scoop out the flesh and make a soup later to go with homemade bread. It getting to that time of year for hearty meals to keep the cold at bay. Sending a big virtual hug 

Ed

HI Cosmopolitan

Great to hear from you yes it is good to take a break as far away as possivle from anything cancer related as it can become all consuming. Going back to work is a big part of that. Good that you are able to return in stages the stimulus from work will be good for your health.Im still working but have to be realistic as to my physical capabilities but keep up with paperwork and dealing with customers. Ive taken a few UK breaks either driving or by train which I quite like as I can get out my seat and walk to ease my back. Best wishes for your return to work and some normality.

Ed

HI Cosmopolitan

Great to hear from you yes it is good to take a break as far away as possivle from anything cancer related as it can become all consuming. Going back to work is a big part of that. Good that you are able to return in stages the stimulus from work will be good for your health.Im still working but have to be realistic as to my physical capabilities but keep up with paperwork and dealing with customers. Ive taken a few UK breaks either driving or by train which I quite like as I can get out my seat and walk to ease my back. Best wishes for your return to work and some normality.

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