Hi Scottish Lassie
You asked about Pet Scans. I know that they are being used increasingly to detect Cancer Activity in women with Breast Cancer. It is an imaging technique that utilise radioactive substances to look at activity in organs and bones.Only some Hospital Trusts have access to them.
I guess you can ask where the nearest place is for you to go to??
I hope that the pain in your leg will pass and pleased that nothing showed up on the MRI scan.
All these scans that we have are so important but also nerve racking each time we await results.
We have just moved house which has been something I have wanted to do since my secondary diagnosis in Jan 2010. Smaller house, easier to manage and has been a positive move and a fantastic diversion for me and my family.
Meanwhile I am coming to the end of my third cycle of tablet chemo. No blisters on my feet this time but tingling and numbness on the tips of my fingers!
Esha
Well done Esha Ness - we talk about moving but am not sure about leaving current hospital or familiarity of house and possible stress of moving so youāve given me encouragement. May you have many years a enjoyment in your new house.
Val - sorry donāt know about PET scans; I was only offered CT scans until going onto a trial and then had a bone scan. Think they just assumed I had lots of bone mets from need for shoulder op and did not want to add to the radioactivity dosage so didnāt bother early on. Not sure if my hospital even has PET.
Just wondering is anyone has experience of bone mets in spine as Iāve got ongoing pain in left side and donāt know what it is. It started about a month ago with muscle in middle of back seizing up (this has happened to me before as I do have a weak lower back and it could be that or maybe the kidney as itās in that area) and getting in and out of bed was really painful. Now itās still there - there was pain actually in spine but thatās gone and I can now bend but muscles aches all the time even using heating pad in bed and the stick on ones during the day and paracetemol. But fine when lie flatā¦ Am wondering if itās the capecitabine since it came on a few days after first cycle of that and I understand muscle and bone pain can be a SE and for a few days after starting I did have a very painful hip (where I have mets too) but thatās completeley gone now so hoping the chemo has helped ethose bones. Am seeing Onc in 2 weeks and will raise it then but just wondering if anyone has thoughtsā¦ (oh this hypochondriaā¦) Not too bad with the capecitabine this time phew - just lots of Flexitol going onto feet to keep them a manageable level of comfort - getting fed of wearing my Birkenstocks and low-level hiking shoes as they are the only ones that are comfortable - so much for any style!!!
take care all
Fran
Iāve got bone mets in my spine which causes all kinds of pains and odd sensations, not only in the spine but in other parts of the body, where the mets are pressing on nerves in the spine. This can cause pins and needles and numbness in hands and feet, weakness in arms and legs and incontinence, though luckily the latter hasnāt been a problem for me yet. (fingers crossed). For me it is only the thumb and first two fingers of the hand that are affected and my onc tells me this is because the other two fingers are attached to the spine via a different nerve system. Iāve had radiotherapy to try and sort this out but only last week so I donāt know how successful it has been yet.
I also have a funny feeling on my left hand side, across the back, shoulder and chest which I find difficult to describe. Itās just a feeling that something is different from how it was when I was healthy. When I tried to describe it to the onc she seemed to think it was also attributable to spinal compression.
The actual pain in my spine varies from tingling to very sharp to a dull ache.
Iām not sure if what you describe sounds anything like my experience but it doesnāt hurt to tell your onc or doctor every new symptom does it. I sometimes worry that everyone thinks Iām a hypochondriac too but surely thatās better than having something wrong that doesnāt get treated because youāre too scared to mention it.
Happy days! BUPA are covering me indefinitely for the Denosumab (Prolia). Made my day! They even offered for an onc. nurse to come to my house to give me the two injections !!
Also second opinion approved at Royal Marsden.
Going for MRI of chest axilla, due to some discomfort, this Thursday and awaiting PET scan appointment to check on how bone mets are doing after five months on Denosumab.
xx
Iām really pleased youāre getting somewhere with all this. As a matter of interest, how often do they give you the denosumab injections?. I take Bondronat, but find having to sit upright for 45 minutes before eating or drinking so inconvenient, so an occasional jab sounds perfect.
Thanks Val - had scan this morning, now horrible wait for results. Am going to try & keep very busy over the next few days!
Esha Ness - hope you are settling into your new home & you will be very happy there! It sounds as though our Capecitabine started at pretty much the same time, as I finished my 3rd cycle on Monday. SEās been ok so far - hands have become a bit dry & some peeling skin on feet but seem to respond well to a mixture of Udderly Smooth & Flexitol, so I havenāt had any blisters or cracking yet - fingers crossed!!! I have also got the Flexitol Skin Balm, which my husband picked up for me at a Diabetic exhibition. The smell isnāt great but it seems to work well! Presume youād be able to get this at Boots too?
Dugsy
Lesley,
I have 120mg of Denosumab every four weeks and the SEs are getting less every time. Itās subcutaneous so no discomfort at all!
I did have to sign a disclaimer as NiCE havenāt as yet approved it for bone mets use but are scheduled to do so towards the end of this year. Itās been FDA approved for some time.
X
Hi ladies
Just a āheads upā re. Capecitabine: I found Dr Scholl moisturising sandals a godsend. I think they are called Hydrastep. No, I am not a rep. for them (!) but found that they really helped soothe my feet. Theyāre not the most stylish shoes Iāve ever worn, but they did the job wonderfully. I wore them round the house as slippers but they are probably durable enough to wear outside. From memory, they cost about Ā£25 but the moisturising properties last for ages. Hope this might help someone.
Alison x
Hi, for the first 2 and three quarter years of Capecitabine I was able to wear my usual birkies but just lately, Iām now 3 years plus with Capecitabine, I can only wear Crocsā¦with socks! Not a good look at allā¦butā¦Iām very happy Iāve had so long on the tablets. Take care all awaiting scans, resultsā¦x
Alison and Belinda
Thanks so much for footwear ideas - Iām already in birkies and socks (shall we plan a fashion show!!!|) so will try to diversify and just hope that I donāt have to go to any posh dosā¦
Have found the new Flexitol Natural heel balm - will see how that works and report back soon. Has anyone else used this yet? Just wondering if anyone has got their GP to prescibe Flexitol this my hospital says they can only prescribe aqueous cream and itās all getting a bit expensiveā¦
Fran
Sweetanimo
Hi,
Really pleased for you everything is going well. How did u go on ref work in the end??
I was reading your post abt the bone injection, hope you donāt mind me asking whatās behind bupas thinking that they wonāt cover Zometa but will cover new drug? As I know they donāt treat chronic illness as a ruleā¦
I would be interested on injection rather than tabletsā¦
Tnx
Txxxxx
Hi Mackers,
Thanks for asking re the work issue - you have a great memory! I didnāt go for it in the end as it looks like my job is safe for the time being and is also fairly stress free - always a good thing!
BUPA do cover Zometa and I had one infusion to start with but having read favourable things about the new drug (called Xgeva in the US) and the fact that itās an injection, (and I have really cr@ppy veins!), I decided to go for it.
Feel free to PM if you want any more info.
xx Anne Marie
Just to let you all know - I had a PET scan done on Tuesday, after my first 3 cycles of Capecitabine, & my onc rang last night with the results. Bones all stable, some areas showing definite improvements & no new areas to report. She was pleased with results & said it was the first step in things improving for me.
I canāt put into words how relieved I am that this drug seems to be working for me.So please take heart all you fellow Capecitabine takers & keep popping those pills!
Dugsy x
Dugsy that is great news - long may it continue. xx
Dugsy am so pleased to hear your good news; Iām midway through second dose of Capecitabine with sore feel and back pain so your positive message is encouraging. Are you carrying on with initial dose or going onto a reduced dose yet? I have CT scan in a few weeks so fingers are crossed - am feeling much better apart from these 2 side-effects which are proving rather restrictive as walking is my passionā¦
take care all - hope itās a good day for you
Frances
Brilliant news Dugsy
Thatās really good to hear Dugsy!
xx
Glad to hear this encouraging news Dugsy. Long may your Capecitabine continue to do its good work for you,
Frances, I have suffered this terrible side effect too and it is awful how it affects your life. I was crying with the pain and it felt like walking on broken glass. Reducing the amount of tablets, that my Oncologist suggested helped a great deal. But I do remember just how much it hurt and how wonderful it was when I could get back to longer walks again. Do you know that it isnāt a good idea to rub the cream in too vigorously as it makes matters worse. Pm if you want any more info.
Lobe to everyone else on here. Grey day here. Hoping the sun will appear sometime. Val
Hi everyone,
Dugsy excellent news that the treatment is working well.
Belinda, I just canāt shake the image of crocs and socks from my head.
Alex
Hi Dugsy
I am so pleased that Capecitabine is working for you. You must be so releived to get such good results. Well worth all the pill swallowing, on and off weeks, remembering to take them, managing side effects etc.
I am just at the end of my 3rd cycle. My feet and toes look grotty but at least this cycle I dont have the blisters. Am plastering on the Utterly Smooth and the Flexotol cream.
My main Side effects at the moment is intermittent loss of feeling and tingling on the tips of my fingers with small cuts that take a while to heal, also layers of skin peeling . This is all OK for me if it means the drugs are working and putting a lid on the cancer activity.
I am very encouraged by your news and equally wish for good news following my PET scan in June. Do you take hormone treatment too? I am also on the examastine.
Otherwise this house Move has been a good proactive move and am enjoying the adventure.
Other excellent news is that I have just got DLA back dated 5 weeks!What a treat. We are all entitled to it and I got very good advice from Mcmillan CAB based at the Oncology Centre.
Have a good weekend everyone.
Esha