More questions - Bone metastases

[lucanus15]

Hello again, I hope it's ok to ask this here. Is there anyone around who has experienced bone metastasis. I'm getting some weird sensations and before I get to make an appointment with a doctor I thought I could ask here. My usual doctor has just retired suddenly and I'm left not knowing where to go! I have a 6 month follow up scan on 24 February but suddenly getting all kinds of things going on which are making me a bit paranoid.

During my chemotherapy treatment in early summer I was given two injections of pegfilgrastim which I tolerated well apart from a certain sensation like tingling but painful like tiny needles in my thigh bones. Now months later I'm getting the same sensation in many places when I have been lying down a while and can only assume it is coming from my bones. I noticed it a few days ago. Also a slight headache, which is most rare for me. I think I need to get checked out. However I'm not really in a position to bring my scan forwards, my Dad being so ill and me not knowing my comings and goings for the next few weeks. Does anyone mind me asking, has anyone here had bone metastasis and is that what it feels like?

Thanks in advance, best regards xx

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear lucanus15

Sorry you have not been feeling well along with the concern about your Dad.

Once you have had cancer, it is quite normal to think the cancer has spread with any new symptom, but this does not necessarily mean it has spread.

Tingling may not mean there is bone metastases and can be something entirely different, e.g a nerve entrapment or even stress. There are many reasons for headaches including tension, stress, triggered by certain food and drinks.

The important thing is to get checked out by your GP. It may be helpful to keep a diary of your symptoms, when they come on, what you are doing at the time, what helps or makes it worse, perhaps include how you are feeling at the time, this may help reassure you or provide a pattern of the discomfort.

If you have a lung cancer nurse specialist where you are you may wish to consider giving them a call to discuss.

Try not to use Dr google and if you are searching the internet stay with sites that provide accurate information.

roycastle.org

cancerresearchuk.org

macmillan.org.uk

If you wish to discuss anything you can either email us at [e-mail] or call our Freephone nurse led helpline number on 0800 358 7200

Kind regards

The Roy Castle Support Team

[lucanus15 in reply to RoyCastleHelpline]

Thankyou so much for your reply. It is reassuring and is good advice. Thankyou for your work. All the best xx

[rottenrunner]

hi Lucanus15

I have lung cancer which spread to my bones, its hard to spot on a CT scan while its active but easy when it dies off as it leaves a scar, which is easy to spot, they where surprised how much I had in my spine and ribs, after chemo that finished Feb 19, that killed off most of it in my bones, and my lung cancer went dormant, and has been since, but my lower rib on the left had a few cells left in, and have multiplied and caused a bit of pain on and off since July, feeling like I'd strained it, especially after a run (I ran/walked the London 10k in July) or a big sneeze, it would hurt for a week or so, apart from that I had no discomfort or knowledge that I had cancer in my bones. I had pallitive chemo from Nov 18- Feb 19, so may of been different to what you had. hope this helps and good luck with it, you can always call your oncologist or their secretary to ask anything, or go to your doctor, macmillan will enquire or get a scan moving for you, wishing you all the very best to you and your family, take care

Dave

[obrien58 in reply to rottenrunner]

Hi , My dear wife was diagnosed nsclc lung (primary) with mets in bones hips,pelvic and lower back in Sept 2017. She had radiotherapy to bones but NOT on lung tumour.

Given Afatinib Dec 17 but had to come off it after a month because of toxic side effects (but at this same time her pain specialist had prescribed NAPROXEN 2000mg daily (1000mg morning and night) she spent a week in hospital very ill with stomach problems .

I still believe Afatinib was not given a fair chance because of this. She then was put on Permextred and Carboplatin which went well for 6 months but then slight progression in lung tumour so was then given Atezoliminib in June 19 which has now been changed to Crizoliminib Jan 20 after biopsy showed mutation to ALK 1 she has only just started so early days until next scan.

Apologies for probable misspelling of drug names.

I am very frustrated because most postings do not seem to mention any severe pain and medications being taken to combat it and the severe after effects of the medications which affects my wife .

It just makes me think that maybe something is wrong with her treatment regime , any help please message thanks

[rottenrunner in reply to obrien58]

I'm sorry if it's not much of a help, I haven't had any pain with this cancer, I did change my diet to vegan in Oct 18, and 5 months later my cancer is dormant, I cut out all extra sugar Oct 19, I can only say what I've done, which I believe has helped, I also take cbd oil, 'cancer is not a death sentence' is from a blog by an Australian woman called Barbara Gannon and is worth looking at. I wish you and your family all the best always 100% positive good luck

Dave 😊👍❤👊