Update right leg:
Update 3 on lytic lesion right femur from myeloma.
This week Tuesday 27th July 2010 I had an appointment with orthopedics to discuss bone progress at the lytic lesion on my right femur and to x-ray the leg
The rod and pins are all stable.
My treatment for myeloma (Rev-lite trial) is at cycle 3, end of week 1. I also have monthly infusion of Aredia.
X-ray showed the myeloma lytic lesion has not increased; it seems to have decreased and there is evidence of bone healing. I did not expect the lesion to reduce the day treatment started, the evidence is it is now working, starting to look like a real bone again. Because of good progress we will not have any radiation at this time. Radiation would have interfered with the trial protocol and the trial may have had to stop.
There is no pain in the right leg, I have more movement and strength is returning.
Left leg:
My left leg has minor myeloma deposits in the femur identified on previous x-ray. We are hoping the Rev-lite trial of Lenalidomide and dexamethasone will treat that.
Last Sunday I started to feel pain in my left femur about an hour after a long walk. This pain was similar to the lesion pain I originally felt in my right femur. Next day I had the right leg x-rayed and compared with the x-ray of 2 months ago. There was no change between x-rays, no fine cracks or fractures visible. It was difficult to determine the cause of pain so decision was to increase pain relief, stay off the leg for 2 to 3 days and monitor. So far the pain is reducing; today the leg is feeling better. The cause may be muscular or nerves.
Links: [Link opens in a new page]
Saturday 3rd April 2010: Lytic lesion right femur
Thursday 8th April 2010: Lytic lesion right femur update
Sunday 22nd May 2010: Lytic lesion right femur update 2
Tuesday 22nd June 2010: Rev-lite trial end of cycle 2
Showing posts with label Lytic lesion. Show all posts
Showing posts with label Lytic lesion. Show all posts
Thursday, July 1, 2010
Saturday, June 12, 2010
Rev-lite trial: cycle 2, day 18.
My cycle 2 of Rev-lite trial is at day 18 with some good achievements in the last 2 weeks.
There have been no problems with the trial treatment of lenalidomide and dexamethasone, less fatigue, sleeping well with the occasional extra nap when tired.
First achievement is with my fractured right femur where I have moved from using the big walker for support to using one crutch to using no crutch. I can now bear weight on the leg and only use the crutch in public to protect myself. A 30 minute walk each day is now a regular event.
Being able to walk means I can now drive the car which gives me more independence.
My main problem in showering has been fear of falling. This was overcome once I was able to bear more weight on the leg giving me confidence to shower and dry myself.
My pain relief has been reduced again, most myeloma bone pain has gone allowing me to spend time sleeping on my sides rather than only my back. To roll over from side to side in bed is bliss.
The big achievement is being able walk the stairs at home. Yesterday we moved from the single beds downstairs back to the master bedroom upstairs and into our Queen bed. The bed upstairs has a Woolrest woollen underlay between the mattress and bottom sheet. I missed the warmth it gives. Waking overnight to turn over I could feel warmer especially where my body was in contact with the underlay compared to no underlay. Best of all was sleeping with Myra next to me again.
Next achievement will be to maintain my Rev-lite trial progress, continue regaining strength and fitness and a return to work part time.
As I get better I am thinking less of myeloma, illness and myself. Now it is other things as well, signs of getting back to normal.
There have been no problems with the trial treatment of lenalidomide and dexamethasone, less fatigue, sleeping well with the occasional extra nap when tired.
First achievement is with my fractured right femur where I have moved from using the big walker for support to using one crutch to using no crutch. I can now bear weight on the leg and only use the crutch in public to protect myself. A 30 minute walk each day is now a regular event.
Being able to walk means I can now drive the car which gives me more independence.
My main problem in showering has been fear of falling. This was overcome once I was able to bear more weight on the leg giving me confidence to shower and dry myself.
My pain relief has been reduced again, most myeloma bone pain has gone allowing me to spend time sleeping on my sides rather than only my back. To roll over from side to side in bed is bliss.
The big achievement is being able walk the stairs at home. Yesterday we moved from the single beds downstairs back to the master bedroom upstairs and into our Queen bed. The bed upstairs has a Woolrest woollen underlay between the mattress and bottom sheet. I missed the warmth it gives. Waking overnight to turn over I could feel warmer especially where my body was in contact with the underlay compared to no underlay. Best of all was sleeping with Myra next to me again.
Next achievement will be to maintain my Rev-lite trial progress, continue regaining strength and fitness and a return to work part time.
As I get better I am thinking less of myeloma, illness and myself. Now it is other things as well, signs of getting back to normal.
Thursday, May 27, 2010
Rev-lite trial: end of cycle 1.
Tuesday 25th May 2010 I completed my Rev-lite trial cycle 1 (28 days).
It was good news, the test results indicate that I am responding well to the new treatment. Because of the positive results I now start cycle 2 which again is 28 days.
Link: Rev-lite clinical trial. Commenced 28 April 2010. (Opens in a new window)
Test results:
IgG, globulin, total protein etc are all heading downwards. The drop in my bloods (platelets, neutrophils, haemoglobin, red counts etc) during the 3 weeks of Lenalidomide still puts them within the "normal" range.
Side effects:
I have had no big reaction or side effects.
There has been fatigue in the afternoon and some tiredness. Some mornings I have a powernap of 20 to 30 minutes which sharpens me up. If I have a fatigue rest I usually sleep and/or doze for 1 to 2 hours in the afternoon.
There has been some dry skin so we split the body into 3; arms, torso and legs, moisturising one part daily giving total body moisturising of 3 times a week. Face, feet and top of hands seem to be the worst.
Day 9 Myra noticed a rash appearing in two spots on my back middle left, not itchy. We contacted the trial nurse who said to monitor. By the next day the rash had reduced disappearing on day 11. We think it was a heat rash.
Day 15 my mouth started to feel “furry” and the bottom lip became tender. My doctor talked me through saline solution, mouthwash and regular teeth cleaning which has helped. I have always used lip balm, just had to increase the use.
Dexamethasone gave me hiccups during the first few days (1 to 4) usually during and after food. No hiccups after the second or third lot of dexamethasone days 9 to 12 and 17 to 20. Sleep was good with only a couple of days of dexamethasone sleep disturbance.
Myeloma:
The 3 soft tissue plasmacytoma on my skull have reduced about 70% in 1 cycle. (70% that’s incredible, way to go Sid, calm down, calm down.) All my myeloma friends know the feeling!
At day 1 I had bone pain at my sternum extending to my left side. Coughing was painful. That pain has reduced.
I still have rib pain middle back both sides, left side worse and general back pain, reducing just a little, still work in progress.
Constipation:
I have some constipation originating from Lenalidomide, dexamethasone and Oxycontin. To control constipation I use Laxsol laxative at morning and evening meals varying the dose as required taking more during dexamethasone days or if there is no motion for 2 days.
Myra makes sure my meals include plenty of fruit and vegetables, drink 2 Litres of fluid a day and eat Kiwifruit (Kiwi gold).
I take the constipation seriously and record my Laxsol and motions in my diary. The aim is one motion a day.
Right femur, Lytic lesion and fracture:
My leg continues to improve.
A bone fracture usually takes about 6 weeks to heal. It is 5 weeks since fracture so I can now use the leg more.
My new goal now is to be "walking" with one walking stick then move to walking normal.
Currently I am walking with the big walker so the new goal is achievable.
The other goal is to drive the car but first I have to walk.
One fear I had with my right leg was cramp from the Lenalidomide. I take a calcium and magnesium vitamin to assist that, so far no cramp.
Pain relief:
When I left hospital my dominant pain was the right femur fracture and general leg pain from the operation.
My pain relief was Oxycontin slow release capsules, 40mg morning, 30 mg evening and Oxynorm immediate release capsules. This was reduced on day 17 and 18 to 30mg and 20mg and is about to be reduced again. The dominant pain now is myeloma back and ribs. I have not used Oxynorm since day 1.
Peripheral neuropathy:
It is recommended not to take alpha-lipoic-acid on days one has Valcade.
I have some peripheral neuropathy from previous thalidomide treatment and take alpha-lipoic-acid capsules and vitamin B to reduce the symptoms. My haematologist said alpha-lipoic-acid has no interaction with Lenalidomide that he is aware of but just in case I reduced my alpha-lipoic-acid capsules from 1200mg a day to 600 a day. My decision, on reflection it should have been all or nothing. Day 23 I started to feel numb and cold feet. I have since resumed the alpha-lipoic-acid back to 1200mg per day, again my decision.
General:
Myra has returned to work after taking 4 weeks off to look after me. I certainly needed her in the first 2 weeks as I recovered from the leg rods and fracture. The second 2 weeks became a game of “what can Sid do for himself today”, a gradual process of regaining independence.
My myeloma bloggers and Lenalidomide web information have said if any problems or side effects arise from Lenalidomide it will be during the first cycle. Now I have completed cycle 1 I anticipate the worst is over and look forward to progressing through to the end of cycle 2 without incidents. That leaves me to focus on getting my right leg and walking back to normal.
Links: (Links open in a new window).
Lytic lesion right femur. Occurred April 3 2010.
Lytic lesion right femur update. April 8 2010.
Right femur fracture. Occurred April 14 2010.
Loss of independence. May 16 2010
Lytic lesion right femur update 2. May 23 2010
It was good news, the test results indicate that I am responding well to the new treatment. Because of the positive results I now start cycle 2 which again is 28 days.
Link: Rev-lite clinical trial. Commenced 28 April 2010. (Opens in a new window)
Test results:
IgG, globulin, total protein etc are all heading downwards. The drop in my bloods (platelets, neutrophils, haemoglobin, red counts etc) during the 3 weeks of Lenalidomide still puts them within the "normal" range.
Side effects:
I have had no big reaction or side effects.
There has been fatigue in the afternoon and some tiredness. Some mornings I have a powernap of 20 to 30 minutes which sharpens me up. If I have a fatigue rest I usually sleep and/or doze for 1 to 2 hours in the afternoon.
There has been some dry skin so we split the body into 3; arms, torso and legs, moisturising one part daily giving total body moisturising of 3 times a week. Face, feet and top of hands seem to be the worst.
Day 9 Myra noticed a rash appearing in two spots on my back middle left, not itchy. We contacted the trial nurse who said to monitor. By the next day the rash had reduced disappearing on day 11. We think it was a heat rash.
Day 15 my mouth started to feel “furry” and the bottom lip became tender. My doctor talked me through saline solution, mouthwash and regular teeth cleaning which has helped. I have always used lip balm, just had to increase the use.
Dexamethasone gave me hiccups during the first few days (1 to 4) usually during and after food. No hiccups after the second or third lot of dexamethasone days 9 to 12 and 17 to 20. Sleep was good with only a couple of days of dexamethasone sleep disturbance.
Myeloma:
The 3 soft tissue plasmacytoma on my skull have reduced about 70% in 1 cycle. (70% that’s incredible, way to go Sid, calm down, calm down.) All my myeloma friends know the feeling!
At day 1 I had bone pain at my sternum extending to my left side. Coughing was painful. That pain has reduced.
I still have rib pain middle back both sides, left side worse and general back pain, reducing just a little, still work in progress.
Constipation:
I have some constipation originating from Lenalidomide, dexamethasone and Oxycontin. To control constipation I use Laxsol laxative at morning and evening meals varying the dose as required taking more during dexamethasone days or if there is no motion for 2 days.
Myra makes sure my meals include plenty of fruit and vegetables, drink 2 Litres of fluid a day and eat Kiwifruit (Kiwi gold).
I take the constipation seriously and record my Laxsol and motions in my diary. The aim is one motion a day.
Right femur, Lytic lesion and fracture:
My leg continues to improve.
A bone fracture usually takes about 6 weeks to heal. It is 5 weeks since fracture so I can now use the leg more.
My new goal now is to be "walking" with one walking stick then move to walking normal.
Currently I am walking with the big walker so the new goal is achievable.
The other goal is to drive the car but first I have to walk.
One fear I had with my right leg was cramp from the Lenalidomide. I take a calcium and magnesium vitamin to assist that, so far no cramp.
Pain relief:
When I left hospital my dominant pain was the right femur fracture and general leg pain from the operation.
My pain relief was Oxycontin slow release capsules, 40mg morning, 30 mg evening and Oxynorm immediate release capsules. This was reduced on day 17 and 18 to 30mg and 20mg and is about to be reduced again. The dominant pain now is myeloma back and ribs. I have not used Oxynorm since day 1.
Peripheral neuropathy:
It is recommended not to take alpha-lipoic-acid on days one has Valcade.
I have some peripheral neuropathy from previous thalidomide treatment and take alpha-lipoic-acid capsules and vitamin B to reduce the symptoms. My haematologist said alpha-lipoic-acid has no interaction with Lenalidomide that he is aware of but just in case I reduced my alpha-lipoic-acid capsules from 1200mg a day to 600 a day. My decision, on reflection it should have been all or nothing. Day 23 I started to feel numb and cold feet. I have since resumed the alpha-lipoic-acid back to 1200mg per day, again my decision.
General:
Myra has returned to work after taking 4 weeks off to look after me. I certainly needed her in the first 2 weeks as I recovered from the leg rods and fracture. The second 2 weeks became a game of “what can Sid do for himself today”, a gradual process of regaining independence.
My myeloma bloggers and Lenalidomide web information have said if any problems or side effects arise from Lenalidomide it will be during the first cycle. Now I have completed cycle 1 I anticipate the worst is over and look forward to progressing through to the end of cycle 2 without incidents. That leaves me to focus on getting my right leg and walking back to normal.
Links: (Links open in a new window).
Lytic lesion right femur. Occurred April 3 2010.
Lytic lesion right femur update. April 8 2010.
Right femur fracture. Occurred April 14 2010.
Loss of independence. May 16 2010
Lytic lesion right femur update 2. May 23 2010
Sunday, May 23, 2010
Lytic lesion right femur update 2
Update 2 on lytic lesion right femur from myeloma.
Last week I had an appointment with orthopedics to discuss bone progress and to x-ray the leg.
The rod and pins are all stable.
The myeloma lesion has not reduced; it seems to have increased slightly. As I am only 3 weeks into treatment for myeloma (Rev-lite trial) there is some catch up on lesion/myeloma reduction to go there. I did not expect the lesion to reduce the day treatment started. The bone doctor is reporting back to my Haematologist on this.
Next week I have an appointment for the completion of the first cycle of the Rev-lite trial where I can quiz my Haematologist on all those matters.
I am making good progress with leg strengthening and walking around the home with the big walker. I can put more weight on the leg now.
Next goal is to drive the car. To qualify I have to get in and out of the car, start and run the car (it’s an automatic) and be able to walk a reasonable distance.
Now I’m getting all excited!
Last week I had an appointment with orthopedics to discuss bone progress and to x-ray the leg.
The rod and pins are all stable.
The myeloma lesion has not reduced; it seems to have increased slightly. As I am only 3 weeks into treatment for myeloma (Rev-lite trial) there is some catch up on lesion/myeloma reduction to go there. I did not expect the lesion to reduce the day treatment started. The bone doctor is reporting back to my Haematologist on this.
Next week I have an appointment for the completion of the first cycle of the Rev-lite trial where I can quiz my Haematologist on all those matters.
I am making good progress with leg strengthening and walking around the home with the big walker. I can put more weight on the leg now.
Next goal is to drive the car. To qualify I have to get in and out of the car, start and run the car (it’s an automatic) and be able to walk a reasonable distance.
Now I’m getting all excited!
Sunday, May 16, 2010
Loss of independence
When I was in hospital recently for my myeloma lytic lesion right Femur rodding and lytic lesion right femur fracture LINK I was bed ridden.
I could not use or put weight on my right leg. This left me dependent on help from other people, my independence had gone. My independence stopped at my finger tips.
It became evident what my essentials were: cell phone, radio, diary, pen, lip gel, hand wash, clean underwear and bathroom bag. All were kept in 1 drawer that I could reach or in a plastic container on top of that drawer.
Non essentials were in another drawer and cupboard out of reach to me.
I had to learn to ask for help and press the help buzzer. The nurses were good, as they said their job is to help the patients.
Physio gave me a range of exercises to do in bed several times a day mainly to get the leg working again. Towards the end of the bone fracture stay they encouraged me to get out of bed to use a walker. This was a struggle as I needed increased short term pain relief to cope with the leg bone pain. My pain relief is controlled release oxycontin tablets, 40mg morning, 30mg evening.
When I was discharged from hospital to home I was still in hospital help mode. The occupational health team inspected our home, gave me a wheel chair and a big walker, put in a ramp at the door step, increased the height of my bed and 3 seater with packers, gave me a bath board, shower chair and commode.
Myra had a serious talk to me about self help and that she could not do everything for me. She had taken 4 weeks leave from work to help me through the first cycle of the Rev-lite trial and during leg recovery. I was in a wheel chair, in pain from myeloma and the bone fracture; both gave me restricted movement. I was not helpless so we discussed what I could or could not do and set some new achievement goals.
It is now 3 weeks since discharge. The myeloma and bone pain has reduced; I can move my leg sideways where previously I could not. I am using the walker more walking 30 minutes 3 times a day along with the walker exercises. There is less restricted movement; I can get in and out of bed by myself, showering myself, drying the dishes at the sink and back in charge of the TV remote. There has been a big step forward.
I am regaining my independence.
I could not use or put weight on my right leg. This left me dependent on help from other people, my independence had gone. My independence stopped at my finger tips.
It became evident what my essentials were: cell phone, radio, diary, pen, lip gel, hand wash, clean underwear and bathroom bag. All were kept in 1 drawer that I could reach or in a plastic container on top of that drawer.
Non essentials were in another drawer and cupboard out of reach to me.
I had to learn to ask for help and press the help buzzer. The nurses were good, as they said their job is to help the patients.
Physio gave me a range of exercises to do in bed several times a day mainly to get the leg working again. Towards the end of the bone fracture stay they encouraged me to get out of bed to use a walker. This was a struggle as I needed increased short term pain relief to cope with the leg bone pain. My pain relief is controlled release oxycontin tablets, 40mg morning, 30mg evening.
When I was discharged from hospital to home I was still in hospital help mode. The occupational health team inspected our home, gave me a wheel chair and a big walker, put in a ramp at the door step, increased the height of my bed and 3 seater with packers, gave me a bath board, shower chair and commode.
Myra had a serious talk to me about self help and that she could not do everything for me. She had taken 4 weeks leave from work to help me through the first cycle of the Rev-lite trial and during leg recovery. I was in a wheel chair, in pain from myeloma and the bone fracture; both gave me restricted movement. I was not helpless so we discussed what I could or could not do and set some new achievement goals.
It is now 3 weeks since discharge. The myeloma and bone pain has reduced; I can move my leg sideways where previously I could not. I am using the walker more walking 30 minutes 3 times a day along with the walker exercises. There is less restricted movement; I can get in and out of bed by myself, showering myself, drying the dishes at the sink and back in charge of the TV remote. There has been a big step forward.
I am regaining my independence.
Monday, April 26, 2010
Why did this happen to me?
I was due to start my rescheduled myeloma Revlite clinical trial on 15th April 2010. Unfortunately the evening before the trial I developed huge pain in my right femur the one that had been rodded and pinned 2 weeks prior. I could not apply any weight to my right leg. Next morning I could not get out of bed so phoned the hospital who cancelled my trial and ordered an ambulance to take me to hospital.
X-rays were taken that showed I had a small fracture at the lytic lesion.
The next 8 days were spent in hospital. Orthopaedics confirmed that the rod and pins were all in place with no problems there.
My pain killers were increased and physiotherapy commenced with leg exercises in bed. The rod and pins in my left humerus were giving me pain limiting the use of crutches. It was decided I needed a walker designed to take pressure off my arms. It has 2 handles for my hands like a triathletes handle bar and a flat padded base that I can lean on.
After 8 days I was released home in a wheel chair along with my walker.
Next haematologist appointment is Tuesday 27th April where we discuss what happens next.
This has been a huge disappointment to me with 2 attempts at the clinical trial being postponed at the last minute.
After reading of side effects of Lenalidomid and dexamethasone that others have experienced I wonder if it is worth having chemotherapy until the leg fracture is healed and I am mobile again. The side effect of cramp on a fractured leg worries me.
X-rays were taken that showed I had a small fracture at the lytic lesion.
The next 8 days were spent in hospital. Orthopaedics confirmed that the rod and pins were all in place with no problems there.
My pain killers were increased and physiotherapy commenced with leg exercises in bed. The rod and pins in my left humerus were giving me pain limiting the use of crutches. It was decided I needed a walker designed to take pressure off my arms. It has 2 handles for my hands like a triathletes handle bar and a flat padded base that I can lean on.
After 8 days I was released home in a wheel chair along with my walker.
Next haematologist appointment is Tuesday 27th April where we discuss what happens next.
This has been a huge disappointment to me with 2 attempts at the clinical trial being postponed at the last minute.
After reading of side effects of Lenalidomid and dexamethasone that others have experienced I wonder if it is worth having chemotherapy until the leg fracture is healed and I am mobile again. The side effect of cramp on a fractured leg worries me.
Thursday, April 8, 2010
Lytic lesion right femur update
My right femur is making good progress 13 days after full length rod and pins to support a lytic lesion.
There was no bone fracture so that reduced the pain. I am getting about on crutches with good rotation of the ankle, knee and hip.
The wounds are clean with no seepage.
Next Monday I visit the orthopaedic out patients for x-ray, stitches removed and examination.
The following day I have an appointment with my haematologist to review my clinical trial that never got started. The day before my leg rodding I had an MRI scan which identified a few problems that require attention. When these are addressed will have to be discussed.
My right leg needs radiation. I can’t start the trial until 4 weeks after radiation.
There was no bone fracture so that reduced the pain. I am getting about on crutches with good rotation of the ankle, knee and hip.
The wounds are clean with no seepage.
Next Monday I visit the orthopaedic out patients for x-ray, stitches removed and examination.
The following day I have an appointment with my haematologist to review my clinical trial that never got started. The day before my leg rodding I had an MRI scan which identified a few problems that require attention. When these are addressed will have to be discussed.
My right leg needs radiation. I can’t start the trial until 4 weeks after radiation.
Saturday, April 3, 2010
Lytic lesion right femur
I have been offline for 12 days, here’s why.
Sunday 21st March 2010 I was out for an hours walk with Myra. After 5 minutes I started limping. 20 minutes later I had to stop for a rest then limped slowly back to the car. We drove home where the situation got better with pain relief and rest.
Next day while off to work in the bus I developed back spasms and more pain causing me to return home for pain relief and rest. Took the next day off. The following day no improvement so phoned daystay who said come in for an examination and x-rays.
The x-rays went to radiology and orthopaedics and later that day my good news/bad news came back.
Good news was we know what the problem is.
Bad news is we are transferring you to North Shore hospital immediately by ambulance.
My right thigh bone (femur) has a pathological lytic lesion in the bottom third about to fracture. Myeloma was eating it away from the inside out. There had been no prior warning, no pain at all. I was unaware of a lesion there, this was totally unexpected.
So I was hospitalised for an intramedullary reconstruction of the right femur. Full length rod and pins.
After the anaesthetic block wore off the leg became very painful. I am home now; pain is getting less though I am still weak and tired. Movement is returning to the leg so I am starting to get around on crutches.
Sunday 21st March 2010 I was out for an hours walk with Myra. After 5 minutes I started limping. 20 minutes later I had to stop for a rest then limped slowly back to the car. We drove home where the situation got better with pain relief and rest.
Next day while off to work in the bus I developed back spasms and more pain causing me to return home for pain relief and rest. Took the next day off. The following day no improvement so phoned daystay who said come in for an examination and x-rays.
The x-rays went to radiology and orthopaedics and later that day my good news/bad news came back.
Good news was we know what the problem is.
Bad news is we are transferring you to North Shore hospital immediately by ambulance.
My right thigh bone (femur) has a pathological lytic lesion in the bottom third about to fracture. Myeloma was eating it away from the inside out. There had been no prior warning, no pain at all. I was unaware of a lesion there, this was totally unexpected.
So I was hospitalised for an intramedullary reconstruction of the right femur. Full length rod and pins.
After the anaesthetic block wore off the leg became very painful. I am home now; pain is getting less though I am still weak and tired. Movement is returning to the leg so I am starting to get around on crutches.
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