Hello again Esha, One cat is on my knee as I (try to) type so I have given him a stroke from you.
My HB is down to 8.5 again> I had a transfusion a few months ago. They had tried iron tablets first but progress was too slow. So I am booked in for Friday. It will take around 4/5 hours so I am taking in my tiny radio with earphones and a good book. I also requested a bed ( instead of a chair) as I cannot sit that long without becoming really sore and uncomfortable.
How are you doing these days? Val
Hi there, sorry not been on for a while but I have had a month of total dispare. Admitted 3 times, each time for high calcium levels that completely floored me, been in bed for a good 3 weeks, sleeping and nothing else.
I wa admitted the 3rd time on Tues 22nd, complete dehydration and calcium levels at 4.2. As prievious times they pumpped me through with losts of saline, potasium and furosemide. This time however I saw an endiocrinologist who was very helpful and had a new plan, both druga had to be approved, so that took some time. I am now going to have today zolendronite, instead of promiduate, every 3 weeks alongside this drug called Calcitonin. This drug seems to lower calcium level more rapidly and once I have taken it, it is suggested I have it in a nasal spray so when the slightest raised level can be treated immediately.
It all got a bit of a mess as my hopes were risen, but the drug wasnāt in, my levels were going down so they dithered when it did come in whether to give it to me. I became very upset, almost tipping over that awful edge as my ward was closing for good that night and they wanted me to stay in the geriatric ward over the weekend, which I couldnāt handle. Lucky for me i have the direct number to my consultant and she said I could go as she could hear thats what I was going to do anywayy but the endiocrinologists werenāt happy when I discharged myself.
I have been good over the weekend and have a pre booked appointment for today at the chemo ward to sort out my drugs then. In my mind I did the right thing, just gotta pick up the flack tomorrow :o)
I have never felt such dispair but needed to be strong, I feel not so great now but hoping with support and talking today it will take some stress away.
Does anyone else have problems with their calcium levels?
thanks for listening
Clare x
Hello Potmaid/Clare, I am so sorry that you have been having such a rotten time. I hope your problems can be sorted out today and that you wil be feeling more like your old self soon. Donāt allow the staff to bully you. I would have wanted home too if it had been me. Let us know how you get on if you can. Sorry I was asleep when you were posting this morning. Take care Val
Hi Clare
Sorry to hear about the problems you have been having, I have had minor calcium level problems, but not on the scale you mention. Mine has just been reduced by the zometa, which is why some of us have supplementary calcium tablets. I was told to carry on with the tablets as bisphosphonates do lower the calcium level. But after my high level, I take some occassionally, but not every day, that seems to have worked for me and my recent calcium levels have been fine.
I can understand why you didnāt want a weekend in the geriatric ward! Glad you were able to go home to improve!
Good Luck Today hope all your treatments get sorted properly!
xx
Iāve frigtened myself tonight. Been looking on websites about prognosis for a single bone met. Five years from diagnosis. Is it really worth trying to live a healther life style when you read such things. Also Iād like to know how long they think I might live because it would change whether I carry on working or not. If I only have five years I would like to spend it with friends not worrying about taking time off work etc for appointments.
Myfanwy x
It is difficult to say how long. My Onc has told me it will catch up with me at some point but cannot say when. He has a plan and keeps a close eye on me. I take each day as it comes and make the most of the time I have with my Family. I am working part-time but at times find this exhausting so weighing my options up at mo!Think I want to find a small job just to get me out of the House.
I have not been on for a while as I had mastectomy in May followed by rt for 3 weeks. I am due to have some more rt as my right hip is aching especially if I walk any distanceā¦start to shuffle! I saw a different Onc which I did have to battle with her as she said it was my meds making me stiff. I finally convinced her last week as she looked at a previous x-ray and agreed that I had some changes in my pelvis and hips.At least I will be sorted for now!
I do find this post helpfulā¦and like so many of you have already said have the same experience that people will say I look really well.Hard to believe I am living with an illness.
hi myfanwy
please do not look at web sites about prognosis!you will only frighten yourself, and no-one can say for sure how things will progress.You only have to read the posts from ladies on this thread to see some having been living with bone mets for some years.
I was dx with several bone mets in 2009 and the last scans show them to be stable,the least us sec sufferers can hope for.
Looking to the future can be scary and we all have our dark moments but I hope you can find some hope.I find it helps to have something to look forward to.In some ways i am lucky that i was dx a couple of years before retirement so do not have to worry about working and can spend as much time as possible with my family,in fact I moved 150 miles across the country to be near my only son.
Hope you feel a bit better about things soon and can decide what is best for you.
Lucinda xx
Hi Racer and Lucinda,
I really appreciated reading what you had posted. Itās strange how things happen, I knew I was going to have another PET/CT scan, I thought early next year, but an appointment has come through for next Monday. I was taken aback but suppose itāll clarify things for me sooner rather than later. I know everyone on this thread understands the dreaded scan time, the good(that it is being done), the bad(you have to have one) and the scary(OMG what will the results be).
Iāve been fine all year (more or less) and donāt quite understand why Iām now a bit unsettled by it all. Friends and work colleagues were so supportive when I was first diagnosed last year I now feel embarrassed to tell them (not my good friends) about this next lot of stuff.
Myfanwy
Hi Ladies,
Have started my AIās and feeling quite well at the mo. When i went to see onc last i told her that i was having bad hot flushes. She gave me a perscription for VENLAFAXINE which is a anti-depression tablet which helps with all the effects of the menopourse.
Has any-one else been on these tablets?
best wishes to all,
liz xx
Sounds brilliant to me!
Myfanwy x
Hi LizH
Thankyou for telling us about the med you are taking for hot flushes. I will speak to my Onc next time I see him. I will try anything to reduce the sweats ā¦not very pleasantxx
I am on venlafaxine for depression and suffer from extreme sweats (more sweating than hot flushes) and it seems they may be caused by the venlafaxine. Because it works well for my depression,i didnāt want to stop it so now I take Ciproheptadine as well and that reduces the sweats. I found out that info on the internet. In all I take 3 tabs to counteract the SEs of tamoxifen!
Dot
xxx
Thank you for your posts ladies, they do help so much, just as you are hitting rock bottom, knowing youāre not alone in all this rubbish does help. My appointment didnāt exactly go to plan, tehy lost my new drug, ended up staing the night, in a nice ward, single room (that bit lasted an hour but it was good to see how the other half live lol) They finally tracked my drugs out and I got it at 11 today and after 2 hr monitering I escapedā¦
All chemo stopped, unfortunately as platelets have dropped under 50, so gonna try and build up a little strength while everything settles down. Luckily Val, I donāt let anyone bully me, I guess thats what you have learnt that too after all these years, it does make me wonder about all the poor people that are pushed from pillar to post, saying nothing though. Glad youāre calcium levels are settled Nicky and its onwards and upwards for us all, be nice to get a break!!!
G night and take care all
Clare xxx
Hi Ladies,
Thank you for comment on drug presciption,sounds like it is not doing anything for you Dot. I shal continue and see how things go!
I may try some acupuncture, they say that helps.
I go to the Mulberry centre in the grounds of west Mid hospital, a real lovely place.
Sending my best to you all
Liz xx
Hi all, itās quite a job keeping up with this thread sometimes 
what a fantastic support it is for anyone with bone mets.Myfanwy I just wanted to endorse what racer said. Itās best really not to ask the āhow longā question. They dont know!!! As many others have said before - the info is all based on outdated stats. If I had asked the question years ago they would have had me dead and buried. There are a number of us here dx with bone mets a good few years ago now, and many of us with quite extensive bone mets. The problem is that even if we have āonly oneā that isnāt the point. Who can say that we wonāt have it spread somewhere else?
I had my nerve block procedure yesterday - not sure why I put myself through this torture - I guess it is in the hope that I might find a bit more pain relief. It didnāt really work on the previous 2 occasions but I just felt that with the scans now that show the tumour clearly it might make a difference know what was causing the pain. The pain cons. seemed to think it worth another go. He came armed with gallons of local anaesthetic LOL - Iām one of those that needs it by the bucketload. It took ages to locate where he could get through between the vertebrae to put the steroid in 'cos there really is next to no gap at all between them. He did say when he looked on the mri he would be lucky to find the gap. After several tries he said we would have a break then he would try just 2 more attempts - and WOW he got in the next time. It would have been a shame to have all that pain with no gain!!! Now I have to wait and see if it has worked. At the mo there is quite a bit of pain from all the pushing around. Watch this space
Dawn
xx
Fingers crossed for you Dawnā¦I hope you find itās worked. xx
Thinking of you Dawn and hpoefully the spinal block will work. Thanks to every-one else for their posts, it reaaly does help to know that we all have the same feelings at times and also great hope as some of you have been fighting for a long time.
Love to all
Rosiexx
Hi Dawn - procedure sounds a bit gruesome, but I do hope the nerve block gives you some relief this time - third time lucky?! Marilyn x
Hi Dawn,
It sure did sound gruesome!
Really do hope it works for you and you can experience some benefits very soon.
Make it a very gentle day today with some lovely treats to help you through all that pulling around yesterday!!!
Take it easy, with specially comforting hugs from Welsh girl xx
Dawn, just to to offer a bit of encouragement by telling you about my sister and best friends experience of this procedure. My Sister has had agonising constant back pain for a number of years, caused by a horse riding accident. The first attempt at an epidural didnāt work at all, but the most recent was a complete success, and stopped all pain. My best friend has also suffered with serious chronic back, that was so bad she could not walk or climb stairs. She had one epidural that didnāt work at all (performed at her local hospital in the UK), and a completely successful epidural (at a private hospital in Strasbourg). So stay positive.