[daftmuleParticipant]

Hi

My dad was diagnosed with Myeloma about 6 or 7 weeks ago.  It took a while to get there though.  Before Xmas he slipped off the kerb of the pavement and jarred his back. He had been having niggling pain before that but that episode really put his back out. Usual help from GP who sent him away with Ibuprofen! Long story short, after weeks in pain he eventually had Xray which showed fracture of T6. In the process the blood tests threw up high protein counts which led to diagnosis.

He is on CTD and after first 3 week course his protein levels dropped by a third which is great. He is now 2 weeks into his second course.

But, 3 wks ago he had to be taken into hospital due to pain in his back. He has been there ever since and there is no sign off pain reducing. In fact it is getting worse as he is on a lot of morphine and yet still complains of high pain levels. Basically he has not been out of bed the whole time. He had had some radio therapy and a round of the pamidronate drip.

It wories me that despite the fracture being in T6 his pain is centred around lower back/waist area and I don’t think there is any joined up thinking about finding and dealing with the root cause. They just keep shoveling the morphine down his neck! It clearly is not working.

They are trying him with a full brace but to my mind they may be barking up the wrong tree and I would be very surprised if it helps. Indeed, the pain is so bad most of the time that dad cannot face even trying to get into it!

I am going to start jumping on desks next week to try and get some focus on the issue at hand as right now, it won’t be the damn cancer that gets him, it’ll be the constant pain and the feeling of being useless with no hope on the horizon of any relief from the pain. To my mind he needs to be seeing a spinal surgeon and the pain consultant at the very least.

Is this state of affairs normal? Why the of pain in lumbar region when fracture is in T6? And why are they persisting with morphine when it clearly is not working? I am no medic but it seems to me that they need to get the appropriate specialist to look at him even if just to eliminate potential causes.

Sorry for the rant but it’s all very frustrating!

[davidainsdaleParticipant]

Hi

Sorry to hear that your dad had joined the Myeloma club.

His problems sound similar to my experience,but they do say everyone is different. My Myeloma when initially diagnosed was at a pp of 54, this caused spinal lesions and compression at the T7 vertebra causing a loss of about 4 inches in my height. I was in alot of pain ( agony ) for the first six months caused by what I think they called a plasmacytosis tumour pressing on the spinal cord. I was more or less in a wheelchair and couldn’t walk. This was picked up by an MRI scan. 10 sessions of radiotheraphy and the CTD gradually reduced the pain. Two years on and much improved, just returned from holiday in Dublin which at one point I thought I would never do except in my wildest dreams, so there is hope.

Hoping your dad has a speedy return to good health.

David

[susieParticipant]

May I just ask you both if the back pain continues when you were lying down ? I’m getting it, but I also have various disc problems ie herniated etc. and a vertebral slip. My pp’s are not measurable at the last count, after 6 months of RTD. I do feel and hope my back problem are down to wear and tear and not myeloma. I am so fed up with the pain, even my Achilles tendons are very painful. (waiting for a scan)

I wish you the best

susie

[daftmuleParticipant]

Hi,

Thanks for the replies.

Dad’s pain has always been reduced by lying down (thankfully) although he always lies on his right side.  Interestingly, a bit of pushing things with the right person today (by my Mum) saw Mum, the physios and the palliative nurse having a bedside meeting with Dad which, from what mum tells me, was quite productive.  The physios tried Dad in the brace but it was obviously painful for him and when he lay down again, they really drilled down to isolate the focus of the pain in the lower back.  Dad describes it as like someone drilling into his back and it appears to be a spot at about waist level and about half way between the spine and his right side.

The physios said they need to go away and think about this and probably review his MRI.  This begs the question of why they hadn’t reviewed his MRI before they started and why they also hadn’t previously tried to really isolate where the pain was.  This is the pain he has had all the time he has been in hospital after all!

Still, maybe now we will get somewhere.  The pain Dad describes sounds like nerve pain but it does seem to be an unusual spot?  If it is nerve pain then I hope to god they look at alternatives to morphine like Gabapentin or Amatryptoline.  Hopefully tomorrow we shall find out more.

I am hopefully getting to meet his clinical consultant next week.  I plan to ask a lot of questions.

[mhnevillParticipant]

Hi

Sorry to hear about your Dad’s pain. Has he seen the pain nurse? I find the palliative care nurse the most helpful person to help with my pain. She explained to me that we often need a mixture of pain killers. I am currently on paracetamol, Tramadol and ibruprofen. It just about keeps the pain manageable, but initially I was on oxycodine, but I found I needed higher and higher doses plus liquid top up. Problem was I was permanently zonked.

How old is your Dad? I am 70 and currently in remission, but unfortunat the pain has still followed me.

Best wishes to you and your Dad.

Mavos

[janwParticipant]

Hi,

Sorry to here about your Dad’s continuing back pain. When three of my vertebrae collapsed in 2010 whilst sleeping in bed, I couldn’t move at all for 10 days. I lay on my back in bed for some relief, but managed to gain bed sores on both heels, together with losing a fair amount of skin on the bottom of my feet from the pressure of remaining on my back in bed without movement. After 10 days, I hobbled with the use of a walking stick and wheelchair to see a generalist consultant as part of the long four/five months diagnosis stage to find out what was wrong with me and when he saw me walking with a stick, he recommended an MRI scan. It was the radiologist who identified myeloma due to the collapsed vertebrae and lesions in my bones, because the consultant was more focussed on diagnosing either breast cancer from my rib pain or gall stones. Therefore, you are right that some of your Dad’s answers should be revealed from the MRI results.

For a month after the vertebrae collapsed resulting in me losing 3″ in height, I was referred to a myeloma specialist who recommended fentanyl pain relief patches, together with Tradamol tablets. However, for the first couple of years after my SCT, I spent a lot of time relaxing on my bed because I found dining/kitchen table chairs too hard and the settee too soft. I walked with the use of a stick, but could not walk far without suffering back pain. I think that due to my lack of exercise and spending a lot of time in bed propped up with four pillows, my back didn’t get into the right posture to help me relieve my pain. Initially, I found lifting objects such as bath towels, hairdryers and a full kettle just too much pain for my back. However over the last two years, I have become a little bit more mobile and as a result the pain has reduced a little and I have managed to reduce the Tramadol tablets to around 2 per day and only use the walking stick as necessary. I don’t feel spaced out with this pain relief, but I know my husband only has to take one tramadol tablet and he feels the room is spinning. Even five years after diagnosis, if I become too tired or try to do much physical work, then the pain increases and I have to rest. I am probably active now for just a couple of hours a day, before I have to sit down to relieve the pain. I still can’t push a vacuum cleaner around, mow the lawn or carry shopping, but I won’t be losing any sleep over these activities and the internet can provide most of my shopping items. I have to be very careful not to lift any objects over a couple of pounds in weight, otherwise my back starts to ache.

It has taken me four years until I am now able to sleep on both of my body sides in bed, but I am still unable to sleep face down due to pain in my back. My consultant did mention the option of using cement fillers inbetween my vertebrae to help relieve the pain and regain my height, but after going through the chemo and SCT, I opted to leave well alone.

I hope your Dad finds some answers to his back pain because it’s so miserable being in pain for the majority of your waking hours.

Regards
Jan

[greenersParticipant]

Hi

my husband has fractures in his back as well, he describes it as brutal he started his CTD but got pneumonia so it stopped currently, he takes morphine and top ups daily, only relief lying on his side. He is going for MRI and assessment for veterbraeplasty to see if he suitable to see if this helps.

 

it is horrible to see your loved one in so much pain let’s hope that the treatments help this horrible pain.

 

best wishes let me know how he gets on

 

[daftmuleParticipant]

Hi,

Well, Dad is still in hospital…nearly 7 weeks now!  His back pain is not better unfortunately.

I managed to see his consultant a few weeks ago and he explained a bit more about what was happening with the cancer.  Seems he had a light chain protein score of well over 14,000 when treatment started which, according to the consultant, is an extremely high figure.  I have since found out that patients with a score that high usually present with total kidney failure so thank goodness Dad has managed to avoid that!  Consultant is convinced that treating the cancer will reduce his pain levels.

The initial CTD treatment reduced the protein values to about 6,000 but then went back up over 10,000 again so a couple of weeks ago they moved him on to a PAD regime.  Latest blood test shows his protein count down to around 1,500 which is encouraging!  Lets hope it continues to drop this time.

Biggest issues is still the pain though.  He is on about 250mg/day of slow acting morphine plus oromorph topups but every attempt to get him up over the past few weeks has resulted in him nearly passing out with the pain.  He has seen a bone specialist, various pain specialists and various physios and there has been no change in approach to his treatment for the pain although they are getting pretty insistent that he has to get up, probably because the longer he is flat out the more likely he is to suffer other complications.

However, over the past couple of days he has managed to sit on the edge of the bed for 30 seconds to a minute and even shuffle a few steps using a zimmer.  Pain is excruciating mind you but he is desperate to get out of hospital so I think he’s willing to try anything right now.  Interestingly he has done this without the back brace.  I think that contraption has been something of a red herring in all this as by the time he has gone through the pain of getting into it, he has nothing left to give to the actual attempt to stand.

So, the battle continues…

• This reply was modified 9 years, 7 months ago by  daftmule.

[greenersParticipant]

Let’s hope he shows more improvement it is the worst thing  ever you get relief from one thing and then get a further problem, let’s just try and take a day at a time, I will let you know if my husband able to have veterbraeplasty. Stay strong

[davidainsdaleParticipant]

Hello Jan and All

My Myeloma journey and experiences which started two ears ago have been very similar to those reports in the posts above. Perhaps it helps us to know that we are not alone in facing these challenges.

When ones mobility has been severely reduced for several months, unable to get out bed, get dressed etc then any gains are worthwhile and forever appreciated. It was a good 6 -9 months post diagnosis before I gained any sort of mobility ie getting in and out of the car for example.

I would just add that my consultant said that my back muscles would gradually compensate for the spinal damage and for this reason I am never sure just how much exercise we should be doing to make the back muscles work and strengthen. Physiotherapy might be one option but this has never been offered to me post diagnosis. I have found that trying to keep busy around the house and garden, combined with a good dose of common sense have had beneficial effects. Also walking with the aid of Nordic poles has helped the road to recovery.

Hope this helps.

David

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