Feeling a bit down. Slipped disc and just been told that I should start treatment soon.

[FairweatherSailor]

The start to 2023 has not been great for me. Diagnosed with an L5/S1 prolapse last week. The sciatic pain has literally had me in spasms on our sofa, unable to speak. I am on a cocktail of painkillers and see the consultant next Tuesday to decide on options. I know that I can't continue with this level of pain. To add to this I had my regular 6m check at the Marsden and have been told in a very empathetic way that I should now be looking at treatment. I have been on W&W for 5 years with numbers creeping up. They are proposing a combination of Obinutuzumab and then Venetoclax - unless I have misunderstood , it was a bit of a blur. I would really value the views of the knowledgeable people in this group. HGB now come down to 123, WBC 98.6, PLT now 226, RBC now 4.21, Neutrophils now 13.80 (these were 3.85 in Jan 20) , Monocytes now 6.41 ((0.61 in Jan 20) , Lymphocytes now 75.92 (29.14 Jan 20) . Can anyone make sense of these figures. I am 71 , living in the UK. Have absolutely no symptoms other than getting a bit short of breath (maybe due to reduction in HGB. I am extremely active , not over weight, do a lot of exercise (cycling is my exercise of choice) . Thanks for any thoughts.

[mrsjsmith]

So sorry to hear about your double whammy of problems. I am seeing my stepdaughter later and she has a similar back problem. I assume an MRI was used for the diagnosis. I am no expert but I think it would be helpful if your two consultants spoke to each other. If surgery is required for your back then Acalabrutinib is only two pills a day whereas O&V requires more frequent hospital visits. Have you been offered any physio to help.

Good luck

Colette

[FairweatherSailor in reply to mrsjsmith]

Thanks Colette. The consultant at Marsden is very thorough and has requested a copy of the MRI scan to check there is nothing more troubling there. He also wants to ideally get the back sorted before he starts treatment. He has said that currently in the NHS O&V is first line treatment (probably based on cost) and that Acalabrutinib is second line so would be O&V initially. I have a physio appointment booked for next Tuesday but am slightly anxious as my leg is very very sensitive to touch . Keith

[mrsjsmith in reply to FairweatherSailor]

Keith in my recent experiences NHS physios don’t do much touching but hopefully the exercises discussed should relieve some of the pain.

I have a friend who is an Osteopath and she wants my stepdaughter to check that her diagnosis is definitely a prolapse and not herniated which is easier to treat, so worth you checking as well.

It’s good your consultant is on the case. I am not sure of the different cost implications of the different treatments but I would have thought the increased amount of time spent in hospital and the tests would be a considerable add on. I have been on Ibrutinib ( second line treatment ) for 4 years now and it’s generally trouble free.

Regards

Colette

[FairweatherSailor in reply to mrsjsmith]

That's really encouraging to hear that your experience of Ibrutinib is trouble free. I hope that when I see the consultant on Tuesday he will be able to see if it is a prolapse or herniated.

[mrsjsmith in reply to FairweatherSailor]

🤞

Yes all good apart from minor petechia and raised BP and I understand Acalabrutinib has less side effects.

Colette

[CycleWonder]

I had back pain and sciatic pain in my leg. My back pain was relieved by a two step process: steroid shots followed by PT. I rarely have back pain now, and if I do, I get more regular about doing the PT exercises.

My sciatic nerve pain presents as a “heavy” leg. When hiking, it is prone to being actually painful hiking down hill. I have found that focusing on relaxing the quad muscle helps a lot. I was tensing up when I felt the first twinge of discomfort (a pretty normal reaction) but working at not tensing up helped.

Two other things have helped my sciatic pain: 1) stretching out my IT band on my hip and 2) alternating hiking with cycling. Each time I go for a ride, I get about 3 days relief from the sciatic pain in my leg.

PT should help. I’m in the US so I could get steroid shots pretty quickly.

[FairweatherSailor in reply to CycleWonder]

it’s the sciatic pain that’s the worst. The lower back pain is minimal. Thanks for responding and good to hear your story. I’m hoping that something like steroid shots might help. I would prefer to avoid an operation if possible.

[mrsjsmith in reply to FairweatherSailor]

Keith just an update and my stepdaughter spoke to a consultant yesterday and the next step for her is steroid injections, so worth asking if it’s your next option.

Colette

[AnneHill in reply to FairweatherSailor]

Anyone who has had serious back pain knows the agony it is. I have had back problems for 35 years. I had an operation in 2001 and the disc broke in to pieces. It took away the pain initially but my back is unstable and I have chronic pain. I have to be careful with bending as periodically it goes into spasm. Years ago I went to an osteopath and it really helped. They can help take the pressure off the sciatic nerve. In 2020 just before lockdown I was in agony and this October I couldnt walk without screaming with pain. I had oramorph and other drugs to make it bearable.

Steroid injections helped a few years ago. I have been told pain management dept prescribe them. I might ask if I can have them.

I darent even load the dishwasher at the moment because if I bend I am likely to send the muscles into spasm.

If you do need an operation you would be best not to start treatment if possible because it thins the blood. I take Ibrutinib and have to stop it for a few days before and after any procedure.

I only had an operation when it was clear that the disc wasnt going back. Not everyone is as unlucky as I am. I hope you get it sorted. It will ease up. Anne uk

[FairweatherSailor in reply to AnneHill]

Thanks Anne. Sorry to hear of your back problems. You are right , I could not have imagined the pain and how if effects being able to do normal things in life. I have also heard good things about steroid injections. I am hoping that might be a way forward . The consultant at Marsden wants me to get the back sorted before treatment. Keith

[jacjar1]

I sure hope you don't have real bad damage. I can somewhat relate to what you going through. Sorry to hear that! Hang in there and be careful with the pain pills.

I'm on V&O treatments get my last infusion next week. I did something to my back about a month ago and its painful to do much of anything. last infusion my back pain went away for at least a day. I was wondering if maybe the steroid infusion was responsible. just had MRI yesterday and still recovering from that 30mins in the tube in a very uncomfortable position. Hopefully next week ill know what i did to back. I have PI and sciatic pain with the spasms.

[FairweatherSailor in reply to jacjar1]

Thanks. Fingers crossed. Glad you're nearly done with the infusions.

[jacjar1 in reply to FairweatherSailor]

got my MRI results 😞 same area of back as you L5/S1 along with L4 some stenosis, compression fractures and edema. kind of scary to think my back is in such bad shape. I know a lot is due to age and abuse over the years. i have sciatica numbness in left leg. My wife is convinced that CLL or the drugs has contributed to the deterioration. Doubtful but i see Oncologist on Thursday. Ill let her give me her take on this.

[FairweatherSailor]

I think that it's about the most common area of the spine to have a problem. My wife had a slipped disc about 12 years ago and it took a very long time ( about 12 months ! ) to correct itself. It did eventually and she avoided an operation.

[AnneHill]

I would try an osteopath if the hospital agree to it. They have a chance of taking the pressure off your sciatic nerve. Even when it eases you will need to remember your back. Pain management gave lots of advice. Dont persevere and think you need to finish what you are doing. Rest and start again. I used to swim but I am immunocompromised and darent risk changing rooms. Just as I think about it I am told there is a lot of covid about. I asked the nursing sister at the hospital today and she confirmed it.Bending is difficult. Be careful. Anne uk