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Hi everyone
I don’t think there has been a post on bone pain for a while so I am asking for advice.
Bone pain is becoming very debilitating for me now and is severely restricting my life. The worse pain is in my shoulder where I had lesions, and my back where the discs have deteriorated.
I am currently taking paracetamol, trampoline and ibuprofen but they don’t work very well and the tram ado make me feel zonked out. I was taken off anti inflammatories for a while, because of danger of worsening kidney function. I was then on diclafenac which really worked for me. They have now agreed to ibuprofen!
At that point I tried morphine patches with liquid top up, but that didn’t work.
I am about to meet with the palliative care pain nurse again, but wonder what works for those of you out there!
Blessings to you all.
Mavis x
Hi Mavis,
Sorry to read about your bone pain and fully understand what is like having bad bone damage myself. Before I was diagnosed I was eventually put on Tramadol which I was taking in large amounts however once diagnosed because I was on the maximum amount of Tramadol they put me on OxyContin which I am still on. I think it is Morphine based and is a 12 hour slow release tablet, I take one in the morning and one in the evening. The dosage is 40 mg which is has low as I can get down to, sometimes I may take a Paracetamol or even liquid Oxynorm when the pain has been too bad.
I hope that they can help you with it or at the very least reduce it to an acceptable level.
Good luck Mavis, Take Care.
CT.
Hi Chris
Thanks for your response. Does the OxyContin make you sleepy? I shall certainly discuss it as a possibility with the Pain Nurse. I did have it earlier. Can’t remember why I changed!
Best wishes to you.
Mavis
Hi Mavis
Like you I have lots of lytic lesions etc. and have at different periods of time had bone symptoms from disc fracture/collapse from the myeloma, most recently a new area of the spine has been giving serious pain so I cannot sleep. I do not wish to be drugged and have tolerated spinal pain all my life, so continue to try and ‘live throught it’, but that is my personal approach and I think others should take pain medications if that helps them. But yes like you I find it seriously impairs my quality of life and ability to do things I once could easily manage.
In my case I note when the myeloma is active e.g. before treatment or on recurrence after treatment, bone lesions and bone pain arise more readily. Like you I am not having SCT, but have not been in complete remission, only a VGPR. I have not been on zometa or an equivalent as to now.
If you do not mind my asking, as you have stated, after some radiotherapy to a plasmacytoma and 6 cycles of CDT you have remained in complete remission for a few years now. Is that with no M spike, normal free light chain levels, less than 10% plasma cells in Bone marrow etc? Have you had new lytic lesions develop since your remission?
It is very unusual for people to stay in remission without maintenance drugs for a period following complete response. Drugs are given even when people have SCT after the SCT, so I am curious as to your oncologists philosophy/ approach to treatment of your myeloma which has resulted not only in a complete remission but drug free for years. This is great.
Dusk.
I have not been offered maintenance drugs after complete remission from transplant. First in London and now in Australia. I do enjoy being drug free though.
Carol
Hi Carol,
Very few people achieve complete remission with the most stringent tests, many do not even loose their M protein/ FLC completely, and I have noted at my treating hospital, (well known) it seems some people after SCT do have some level of maintenance aimed at pushing the remaining levels to a complete remission or a lower stable level.
The aim is best quality of life with minimal problems from the myeloma and it is great to be drug free which clearly should be the aim of life after the SCT. But looking at research it seems that 10 year survivors are not only those who have had SCT and been free from other illnesses, but those who had no /few cytogenetic abnormalities and had break periods from drugs.
A lack of an agreed international consensus on treatment employing cytogenetics data and disease staging information means individual hemato-oncologists in the field follow their own philosophy in regards to treatment. In the USA they have more flexibility if they can convince insurers/ drug companies. In Australia and UK there are ‘rules’ as what the system will pay for. I suggest you look at the Beacon website- their poll shows how much induction treatment varies globally.
I am sure if induction regimes were less variable and more tailored to individuals we might be clearer on how to achieve better outcomes for patients. It is a matter of luck to be diagnosed early with MM as it is to get treatment that is optimal for individuals.
Hi Mavis, sorry for not getting back sooner, Re: OxyContin I am not too sure about the sleepy but probably yes. I am only 3 month post SCT and have been sleeping so much, prior to the transplant the tablet is a 12 hour slow release. I take it at 8am & 8pm so with the evening one I am already in bed due to pain & fatigue therefore if I sleep is not really an issue. I hope you get a different type of pain relief that really works.
Take care, CT.
Hi Dusk
I agree with you that treatment should be more tailored to the individual. In London I was only offered the standard CDT. I asked several times at Ealing a Hospital about my cytogenetics but never received an answer so don’t know if it was even done. I had found a trial using Velcade at University Hospital but the consultant at Ealing advised me against it. Fortunately I responded well to the CDT and went on to have an auto SCT. Before the SCT I was at no measurable paraprotein in blood or biopsy, but my lambda light chains and ratio were still out of normal range and rising during the wait for transplant. However after transplant the light chain ratio is normal…..so I am claiming stringent complete remission! Now 16 months later my blood test still shows no paraprotein and normal light chain ratio.
Some of the factors you outline influencing long term survival I feel are in my favour, as I was diagnosed early (broken collarbone but low lambda and paraprotein numbers, 25% cells in the biopsy) I responded well to treatment, achieved stringent complete remission and have no other existing health problems. So all in all I feel very fortunate.
Have just travelled to Bosnia from Australia, off to London to catch up with students and work colleagues on Tuesday and have booked a 2 week cruise out of Venice into the Black Sea in July. So…..retired and living life to the full while I can. Who knows what the future
holds for any one of us?
Carol
Greetings to all. My husband has a lot in common to most of you. But now I am desperately searching for an answer to acute headaches with sickness. Has anybody have those? He is not on chemo now andhis last Zometa was last month.
Many thanks
Alexandra
I have just undergone my SCT harvest yesterday and had the worst headache. Headaches and bone pain are something that I have been experiencing in the last 3-4 months. At this point I must point out that each person is different, so side affects will be different.
My consultant at my transplant hospital recommends that I should have an MRI after my procedure, so that should show any issues.
I must also say that we must trust in the professionals and follow their guidance.
Away from this I would like to ask if anyone has tried CBD oil/capsules?
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