Liz - just a note to say hope the radiotherapy goes well - sorry I’ve only had one dose of my arm so can’t really advise but am sure others will be able to. Yes, keep postive - there are lots of good treatments out there and more coming along all the time - that’s what encourages me along with all the support on this site.
and Lesley - glad things are going well and hoping the marker is just a blip; from what I’ve heard from others these markers are not always helpful so good to know your Onc is taking a steady response.
I had 5 rads to my spine in early December & was also told it might make me feel sick & give tummy trouble. I had no problem with diarrhoea but it did make me feel nauseous by day two. I just took the anti-sickness tablets I’d been given & they worked well. The nausea continued for about 3/4 days after I’d finished.
The only thing I’d say be aware of is that any pain you may have might got worse before it gets better while having the radiotherapy. My pain got considerably worse for about 3 days then subsided & ever since I’ve had no problems at all in that area.
I hope all goes well for you & the radiotherapy works well for you.
I had radiotherapy a few times for areas in my ribs and my spine. I din’t notice any immediate relief from pain but it took a few weeks to improve. I did not have any side effects and would not hesitate to have more radiotherapy to relieve bone pain. I just lay on the bed and thought " kill those wee b*ggers, go and get them!". Hope t works for you too. Val
There’s alot of evidence that visualisation helps recovery - well done Val!! I alternate between “go get them” images and visualising softer images of tumours “melting” - hoping one of these helps along with medical treatments.
Fran
Thank you Belinda x… Ive been reading through some of the posts. Its all very encouraging. I will come back on and read somemore tomorrow as it has really helped me. I feel so guilty saying this but i’m so glad im not alone. I forot just how much suppoer this site offers. Speak to you again tomorrow hopefully.
I hope you continue to take some comfort from the posts here. They have given me incredible support over the last 2 years since my secondary diagnosis. I didn’t post with my primary but I read a lot of them, never thinking that I was ‘special’ enough to get secondaries. Whilst it is absolutely tragic that any of us have to be here, I honestly feel priviledged to be ‘friends’ with everyone on this forum. You will always get support and a friendly, encouraging and practical response to your feelings, questions and fears.
Good morning… I hope you are all good on this very wet day. I was supposed to be at my placement in a hospital as part of my nurse training today at 7am but the pain is so bad in my neck and shoulder that I had to stay off. Thought after a breakfast of pain killers I could maybe do a late shift instead but the manager has said no :0( I hate that this disease is distrupting my life yet again… I can’t afford to start over again and I love what I am doing and hate being sat at home thinking about it! My daughter is staying with her father this week and I could really do with one of her special hugs right now!
Spoke to my Macmillan nurse today about the pain getting so severe since starting treatment and she suggested it may be ‘nerve’ or ‘soft tissue’ pain as the zoldraclonic(?) acid only hurts them the first day or so. I have been given an appointment with my onc tomorrow to be examined and perhaps be sent for rads. Is it normal to be in this much pain? Also this means another day off work! It’s what’s keeping me going and u can feel it slipping away :0(
Apart from that, my wonderful partner has taken the day off work to support me and put a smile on my face but I know this can’t happen all the time… I hate being alone with my thoughts. I used to be so full of life and now I’m sick of it!!! Xxxxx
Firstly , Hello I was diagnosed with bone mets 2weeks ago and was totally devistated. I found my self on this forum and was really overwelmed with the super quick response from the other people on this site. They were wonderful and i have felt it has become a big part of my emotional comfort.
I have just started my radiotherapy on my pelvis, 2 weeks of daily hospital visits and then they will look at my spine where i am having some trouble. Glad you have a super duper partner to help you through but i know how you feel , sometimes know-one can help with the inner-thoughts one has. I was reading one post the other day on here and the lady wrote a quote which i have kept as my ‘mantra’ when things get tough. I think it was Winston Churchill - Never give up, Never give up, Never ,Never , NEVER.
I think it is a really good one. Although sometime i am like you and feel helpless and angry that i am going through this again.
I know it’s nothing like a daughter hug but sending you one anyway
Good Luck with the Onc appointment tomorrow Julia…hope some rads might be helpful… and I hope you are also finding them effective Liz. I had an episode of nerve pain, at top of leg but due to cancer involvement to my sacrum…anyway the rads really helped…the pain got worse for a couple of days before going…this was about, I think, 3 years ago…I’m still fine, the pain has never returned.
xx
For Lyndyloo, hi I’ve only just read, seen your post a couple of pages back…yes bones can improve…mine are better than they were in 2003, my diagnosis year. Take Care.
xx
Hi there, new to his thread. My mum was diagnosed in feb, she’s only young has had mastectomy and had 9out of 17 nodes also. Monday she was told they are 90percent sure it as spread to her hip. Does the amount of time between diagnosis and finding the cancer elsewhere have an affect on how aggressive or difficult it is to treat. They won’t scan again til she finishes chemo in sep, waiting is horrendous… I hate this constant feeling in my stomach that the wort is gonna happen.
1st chemo yesterday (taxotere) and zometa. All went well.
The dexamethasone (steriod) is playing silly games with my blood glucose. The chemo unit got in touch with my diabetes consultant. Her registrar came to see me while I was having chemo and has perscribed some fast acting insulin to take whilst on the dex and whilst the dex is still working in my body. The good news about the dex is that I am not bouncing around the house all night (well not so far!) - correction,awake at 4am.
The full results of my scan show that I have:
enlarge lymphnodes with cancer cells in them in my chest /shoulder area
a 4cm tumour in my sturnum (breast bone)
tumours in my spine at locations C9 and C10
tumours in my ribs
I have faith in my treatment and am sure that the chemo will put my cancer back into hibernation. I will be having a scan after the 3rd round of chemo and all being well will then have a further 3 rounds (6 in total)
So far no sickness - but the large does of anti-sickness given with the chemo should still be working.
Thank you ALL for your love and support.
Next round in 3 weeks.
Must admit to being somewhat scared - even though most of the time I am positive.
Hi Mammyoftwo and Pam
Firstly Mammyoftwo, you may have read on here that mets can be found at the same time as the primary so it doesn’t always make a difference as to the time gap between the 2 diagnoses. The main differential would be the grading of your Mum’s BC, the lower the grade the slower or less aggressive it tends to be. That is a bit simplified and other factors would be taken into account. As your Mum is already having chemo this will affect all of her BC cells, be they in the bone or breast or lymph nodes, so she is already having treatment for her bones even if it’s not been specifically targeted. One of the changes that would be made if bone mets are confirmed in September is that she would have bone strengthening treatment either by drip (IV) or tablet form. This may be worth asking about now?
Pam - Good Luck with your chemo - it is doable and I hope your mid way scans give you positive results. Mine did and it was a real boost that helped me get on with the last half of chemo, knowing that the little BC Buggers were being killed off!
I have posted a thread elsewhere, but am repeating my post here, because a number of us have talked about Cyberknife and TomoTherapy in this thread.
The National Radiotherapy Implementation Group have finally produced their recommendations to Commissioners and Clinicians regarding the commissioning, and use of SBRT (see link below). It is very worthwhile reading it, as it will be very useful for those who require funding for stereotactic radiotherapy such as Cyberknife or TomoTherapy.
Firstly, it makes clear that commissioning of SBRT should become the responsibility of the new Nationalised Commissioning Group (not GP commissioners).
Secondly, it recommends that SBRT is commissioned for the following cancers Lung Cancer ,Prostate Cancer ,Head & Neck cancer, Hepatic cancer ,Renal Cancer, Oligometastases, Spinal tumours, Pancreatic cancer.
Thirdly, it suggests the above list should be a minimum, not maximum list.
Fourth, it suggests that commissioners should offset the cost of SBRT, by the savings it can produce (e.g, SBRT can delay the point when chemo is required).
I am personally very pleased with this report, because it supports all the points I have been making in my numerous letters to commissioners and policy makers (as well as on this forum). Also, while Commissioners are not compelled to accept the recommendations, it makes it increasingly difficult for them to resist funding. This is not the end of the funding war, but it certainly is the beginning of the end. ncat.nhs.uk/sites/default/files/NRIG%20SBRT.pdf
I was diagnosed with bone mets 2weeks ago and was totally devistated. I found my self on this forum and was really overwelmed with the super quick response from the other people on this site. They were wonderful and i have felt it has become a big part of my emotional comfort.