Hi
need some advice please !
I have secondary breast cancer in various bones, and some lymph/soft tissue involvement in chest wall.
The last 2 weeks have been very difficult as I try to adjust to a regime which allows pain relief but without either sickness or extreme tiredness.
I have spent over £35 in the last 10 days as each doctor (either NHS or a Macmillan doctor or nurse)I see recommends yet another presciption/medication. Next week, I will probably have it all sorted when the new free card comes in !
Right - have been on Oramorph, Tramadol. Zormorph. Anti-sickness include Metrocopramide 9excuse spelling), Cyclizine, Dom Peridome and Norzanin (levomopromazine). And Bisphophonates although I gave those up 10 days ago as I was on the trial and was allotted the tablets. That regime of waiting an hour etc each morning did not agree with me at all. So, my Oncologist is switching me to I.V. Pomedronate.
So, currently I am taking 800mg Ibuprofen x 3 times per day,
1000mg paracetomol x 4 times per day. 20mg Oramorph at 4 times per day. Levomepromazine 6.25 mg once per day.
The Consultant Doctor from Macmillan just rang and after discussion from today will try
Ibuprofen and Para - as above. Go up to 20mg Oramorph 5 times per day. And go back onto Dom Peridone anti-sicknes.
Nothing is controlling the pain enough without side effects - side effects that mean I cannot function normally. ie. need help shopping, cooking, ironing, everything really.
Does anyone have any ideas what has helped then with the pain. I was on the Bisphosphonate trial for about 7 weeks before stopping and the Ibandronate was offering no relief at all.
Thank you in adavance
Ena x
Hi Ena,
Haven’t much time at the mo to do this justice. I am off to the Pain Clinic!!!
I have had extensive bone mets since 2002 and been on pamidronate since then which had worked very well for me. Over the 7 years since then I have had very little pain problems. But this past year pain has been a problem. I have had rads to the problem areas, but if anything am worse now than when i had that done. I have had rads in the past and they have worked well.
I feel a wimp - I am on a lot less meds than you are. 20mgs zomorph morning and night, with a couple of topups of oromorph during the day = to about 10mgs. It is not touching the pain now. I don’t want to increase the morphine because my experience of it last year gave me all the side effects. I am on a trial at the Marsden between Morphine v. oxycodone and have said I do not want to continue with the morphine. Watch out for my 2nd instalment when i get back today, after yet another MRI and x-rays.
dawnhc
xxx
Hi Ena
I was admitted to hospital In January so that my pain relief could be sorted out. I have mets in liver lung and lymph glands but the pain was caused by lymphangitis in my left lung and I had never felt pain like it. But this is what I am being treated with now along with Taxotere chemo and I must say that my pain has pretty much gone (apart from today)20mg omeprazole (for stomach) in morning, diclofenac slow release 75mg twice a day. Prednisolone 10mg a day. sodium valproate 600g in evening 15mg oxycontin slow release twice a day. I also have a bottle of oxynorm liquid which I havn’t had to use since I came out of hospital.
I hope this is of some use to you
love Caroline
Ena - on re-reading your post I notice that you were only on the bisphosphonates for 7 weeks. Your onc is switching you to Pamidronate. When I was first diagnosed with bone mets I was on pamidronate and it took about 3 treatments 4 weekly before I felt any relief from the pain. I was then switched to 3 weekly on which I have remained. It may have been too soon on the oral bisphosphonates for you to have noticed relief from the pain so I do hope once you get back on bisphos. that things will improve.
Dawn
xxx
Hi Dawn and Caroline
Thanks for this information.
Yes, the oncologist is thinking of Oxcontin patches and so is upping my Oromorph to see if I can cope with relatively high doses of morphine. 2 days on and I have not been sick, a bit queasy at times, so things are looking good for patches.
Caroline, I am also taking the omeprazole to settle stomach and dom peridone.
I stopped the ibandronate tablet bisphosphonate as much because the hour long wait before eating, taking tabs and bending was driving me mad. And the sight of my 8 year old son lying on his back waving his legs in the air as I tried to tie his football laces will stay with me forever !
thanks again
ena x
Just to say I find co-codomal (Zapain) tablets really good for bone pains. I get pains in thighs/hips/shoulders/jaw at varying intervals - pain seems to creep round my body and pop up in a different place to surprise me. Co-codomal is a mix of codeine and paracetemol so can be topped up with Ibuprofen if needed (though I have not needed to do that often). I take the tablets when pain comes on and find it zaps pain within about 20 minutes - I have been advised to take regularly as a matter of course but I prefer to wait and only take tabs when necessary.
I did try Oromorph once but it made me feel queasy and I just preferred co-codomal. So I figure I have Oromorph in reserve in future if needed…
The downside to co-codomal is constipation but I find various chemos I have been on and/or Movicol counteract that.
I too gave up on oral Ibandronat, partly cos I got fed up waiting for my cup of tea in the mornings, then the last straw was when I got nausea in mornings. Now I am on monthly pamindronate - not sure how much that helps bone pains, may be pain would be worse without it. I do have extensive bone mets and a tendency to arthritis anyway.
I have also had rads on hips/shoulder/neck to solve specific pain areas - that worked well.
Good luck with sorting out the meds, its a nightmare trying to figure out what is best.
Lottie
… sorry, should have also mentioned I suffer from nausea quite a bit. I find Levomepromazine good - same dose as you… I have been advised to take this before I go to bed as it tends to make one sleepy and has longish term effect so ok to take ‘in advance’. I also take Cyclizine on an ‘as needed’ basis. I have never found the Domperidone effective myself. But of course we all differ and its a matter of trial and error I guess.
Lottie
Hi Ena,
I’ve been having the same problem as you over the last couple of weeks.
Had palliative rads to spine because mets are causing nerve pain down my left arm.Onc put me on 40mg MST(slow release morphine)and Gabapentin with Oramorph for breakthrough pain.I didn’t take the Gabapentin because I didn’t like the sound of the side effects so just started on the other two.Over the last two weeks I’ve been really nauseous and sleepy.I went to see Dr at Marie Curie Centre last Wed and he said to try one Gabapentine a day and lower Morphine to 30mg twice a day.Also to take anti sickness tablet(Domperadone) in the morning before I feel sick.This seems to have worked so far as I haven’t felt sick since Thursday morning.
Alli x
Thanks Lottie and Ali
That info has helped and when I see Macmillan people on Monday, will discuss all options. Some of treatment you are on has been mentioned to me.
I ran out of 400mg Ibuprofen last night (or so i thought) and the pain last night was bordering on unbearable - I hope that is not an exaggeration. And this morning - the same. I then found my spare ibuprofen for when I run out ! I did not realise what a difference it makes. As important as the Oramorph I would say.
I also finished palliative radiotherapy just over 2 weeks ago , to the spine and rib. Doesn’t seem to have helped much but effects can take up to 3 weeks to kick in, I am told.
The Macmillan doctor now wants me to have an MRI scan to my lower back. This is very painful but on the recent bone scan and CT scan was clear. My NHS oncologist thinks nothing ccould have happened to cause such pain since the bone scan in early Feb 2009, but the Macmillan doctor thinks that things can be missed by scans. Some scans are better than others at picking things up
It is frightening really - an NHS onc. who I have to push to get anything, a Macmillan doctor who thinks things could have been missed…
thanks again
Ena x
I
Ena -
have you started the IV bispops? I wasnt sure when I read your post…like Lottie I have pain that sometimes just seems to sneak in and suprise me and I have found co codamol quite effective, also tramadol. A week ago I couldnt do without and now seems OK. I really hope that you can get some relief here, and it doesn’t seem like an exaggeration, real full on bone pain (which I only have a little experience of despite a number of areas) is horrible.
cathyx
Hi Ena,
Be careful with taking too much Ibuprofen,as they can irritate your stomach lining.
Alli x
Hi
thanks for responding Ali and Cathy.
Yes, I was taking 4 lots of 2 x 400mg tablets per day (3200 mg) of Ibuprofen per day but Mac nurse reduced this 3 lots of 2 x 400mg per day (2400 mg) per day. And in addition, once a day, I take Omeprazole which is supposed to prevent againsta stomach bleed.
Thanks
Ena x