Hi,Would appreciate advice on coping with pain continually getting worsening.Diagnosed in Feb this year with small mets in thoracic and lumbar verebrae and since then 1 dose of palliative radiotherapy and monthly denosumab. My concern is how quickly my oral targin and fentanyl patch have had to be increased to cover my pain. Is this normal? Do I have to let go of the fact that you are weak if you need lots of meds and accept it is what it is?Thanks ,Lesley

Both your replies made me cry, in a good way , and with relief to read your answers. Thankyou . It's not a topic I talk to anyone about, barring my GP and oncologist but somehow that is not the same. I appreciate yor replies very much. Now I do have to stop being a sook as my dog doesn't like it when I cry :),Lesley

Hi Lat, I don’t have personal experience of this type of pain either. I do know that taking adequate pain relief regularly is the best way to go. Once the pain works up it is much harder to get under control. Also, pain is not good for your general health. Do what you need to to be comfortable. Very best wishes going your way. Dogs are very clever!

Hi @LAT, I have mets in my hip and when I do get pain it isn't that bad. However, I have heard the pain associated with mets in your vertebrae can be quite bad - so don't feel weak!! My concern for you is that your pain is getting worse. Do you know if your radiotherapy worked? Also, have you decided not to have other treatment (chemo or hormone). Increased pain maybe associated with the mets getting bigger which will happen if you are palliative and if so, perhaps you can get a referral to a palliative specialist who will be able to manage your pain more tightly. Of course if you are wanting to treat your mets you need to get started on something that is going to reduce those mets, particularly if the radiation didn't work- if the mets get smaller or disappear, your pain may reduce. Pain is so debilitating for everything in life and there are things that can be done. Good luck. xx

I am so glad you have reached out for support @LAT. Although I have not been in your position (yet!), they say that they can do so much these days to manage pain. I look forward to hearing more for you as part of the Group. Everyone is so lovely, we are all in the same situation and willing to share info. xx

Lesley I don't know the ins and outs of pain meds but I DO know that we do not control our pain thresholds (we're all different), and that there is NO clinical benefit to suffering through pain. Take the drugs. It is 1,000,000% NOT weakness. K xox

Newbie with pain | BCNA Online Network

Lisa1407
Member
5 years ago
I am so glad you have reached out for support @LAT. Although I have not been in your position (yet!), they say that they can do so much these days to manage pain. I look forward to hearing more for you as part of the Group. Everyone is so lovely, we are all in the same situation and willing to share info. xx
LAT
Member
5 years ago
Hi Lisa1407
Thanks for reply, I had a bad weekend with pain but was able to speak to my GP yesterday and my fentanyl patch has been raised and that is working. My mets pain from vertebrae presented in my left abdomen, so had trouble getting the diagnosis.The mets are from BC Dec 2017 .The palliative radiotherapy, Feb this year, worked very well and I will be asking my oncologist onThursday re more, but I have had previous radiotherapy to that area for Merkel Cell Carcinoma in 2011 so that could be a problem !
I've made the decision to have palliative care and have met my palliative care specialist 5 weeks ago and my GP and oncologist will refer me back when it's time. I've just been suprised (unpleasantly) by how quickly the pain " ramps up" 🤔 and so I decided it was time to reach out for support, thankyou to all who replied 😊
I have joined the Living with Metastasis group and have just been exploring the site, reading and feeling I'm not alone. That helps!!
Thanks again for your reply, much appreciated,
Keep safe , Lesley
PS, not sure of protocols....I'll learn!
Lisa1407
Member
5 years ago
Hi @LAT, I have mets in my hip and when I do get pain it isn't that bad. However, I have heard the pain associated with mets in your vertebrae can be quite bad - so don't feel weak!! My concern for you is that your pain is getting worse. Do you know if your radiotherapy worked? Also, have you decided not to have other treatment (chemo or hormone). Increased pain maybe associated with the mets getting bigger which will happen if you are palliative and if so, perhaps you can get a referral to a palliative specialist who will be able to manage your pain more tightly. Of course if you are wanting to treat your mets you need to get started on something that is going to reduce those mets, particularly if the radiation didn't work- if the mets get smaller or disappear, your pain may reduce. Pain is so debilitating for everything in life and there are things that can be done. Good luck. xx
LAT
Member
5 years ago
Thanks
Giovanna_BCNA
Member
5 years ago
Hi @LAT sending you a private message
LAT
Member
5 years ago
Hi,
Thankyou again for your comments and the care and understanding they show. I will do as you suggest and try and keep on top of the pain without worrying about anything other than " living the best life I can." What a great way to express what I want to feel.😊
Leia
Member
5 years ago
Hi Lat, I don’t have personal experience of this type of pain either. I do know that taking adequate pain relief regularly is the best way to go. Once the pain works up it is much harder to get under control. Also, pain is not good for your general health. Do what you need to to be comfortable. Very best wishes going your way.
Dogs are very clever!
kmakm
Member
5 years ago
Woof!
LAT
Member
5 years ago
Both your replies made me cry, in a good way , and with relief to read your answers. Thankyou . It's not a topic I talk to anyone about, barring my GP and oncologist but somehow that is not the same. I appreciate yor replies very much. Now I do have to stop being a sook as my dog doesn't like it when I cry :),
Lesley
Afraser
Member
5 years ago
Dear @LAT
I haven’t any first hand experience of what you are facing but of one thing I am sure. Pain is pain. No-one becomes a finer, better person by enduring serious pain unnecessarily in my book. Relieving pain as much as possible does not mean you are weak, it means you want to live the best life you can. Your doctors will appreciate your wish not to
over medicate but will also want to help. Talk with them by all means but about the best means of pain relief, not about a moral judgement about perceived weakness. I hope you feel more comfortable very soon. Best wishes.