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 Bones. Show all posts
Showing posts with label Bones. Show all posts
Thursday, July 1, 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!
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, September 10, 2009
Health update September 2009
Previous update summary July 2009:
After having my second stem cell transplant in August 2008 all was going well, the 100 day tests were positive, IgG was down to normal, I was feeling good.
Then my 3 monthly tests in May 2009 showed my IgG had increased from 10 to 18, measured g/l in NZ (7 to 16 is the normal range). A month later it had risen to 22, the trend was heading up. Except for the proteins all other tests were OK.
This update September 10 2009.
IgG results: g/l (USA mg/dl)
24 Feb 2009 = 10.1 (1010)
18 May 2009 = 18.4 (1840)
16 June 2009 = 22.2 (2220)
21 July 2009 = 21.8 (2180)
18 Aug 2009 = 12.7 (1270)
Treatment:
It was decided to try to reduce the IgG early with chemotherapy before it got too high.
Valcade and Revlimide are not funded by Pharmac in New Zealand; we will try them on a trial or at a later date. A link to Valcade, Revlimide and Pharmac NZ summary is here.
Chemotherapy; cyclophosphamide (Chemo) and dexamethasone (steroid):
First 28 day cycle commenced Wednesday 1st July 2009.
Second 28 day cycle commenced Wednesday 29th July 2009.
Third 28 day cycle commenced Wednesday 26th August 2009.
Cyclophosphamide: 500mg day 1, 8, 15, 22.
Dexamethasone: 20mg day 1, 2, 3, 4 and 15, 16 17, 18.
Allopurinol: 300mg, 1 tablet per day.
Bactrim: 480mg, 2 tablets Mon/Wed/Fri.
As you can see by the 18th Aug result there has been a dramatic drop in IgG.
When taking the dexamethasone I have sleep problems for about 6 days but no other side effects. I get fatigue the day after I take the cyclophosphamide, no nausea and no other side effects. Bowels have been normal. I still have Aredia monthly.
Soft tissue plasmacytoma:
Two soft tissue Plasmacytoma developed on my skull as the IgG increased, a fine needle biopsy confirmed what they were. They were a pronounced lump, no pain or discomfort, getting larger as the IgG increased. Seven days after the chemo commenced they had reduced by 50%, at the end of the first cycle they had reduced by 80%. By the end of the second cycle they had disappeared altogether.
I have had 2 plasmacytoma in bones before when in relapse; June 2007 left humerus, October 2008 right humerus. Both required surgery for titanium rod prosthesis..
Bones:
My inflamed sternum from continual coughing in June slowly reduced, disappearing mid July. That was painful, like a knife in my chest. X-rays showed no fractures.
At the end of July I had an uncontrollable sneezing bout which fractured a rib, right side, at the back mid height. Pain relief went from Panadol to Codeine to Paradex. I had to sleep on my back for 2 weeks and movement was restricted. It took 3 weeks to start to feel comfortable again and reduce the pain relief.
The rib fracture was a reminder that there is still residual bone damage from my initial state at diagnose in 2001 and relapse in 2007/2008 and I need to be careful. The bone damage can be seen on x-rays.
Peripheral neuropathy:
Peripheral neuropathy from 14 months on Thalidomide in 2007/2008 has stayed in my feet though has reduced. Only mild, doesn’t restrict me other than having to wear socks 24/7 as my feet can get cold. To help myself I massage my feet and take vitamin B+ and Alpha-lipoic-acid.
Chemo brain:
Chemo brain from my stem cell transplant in Aug 2008 has subsided, memory is better but I still have a problem remembering names. I still write lists of things to do, work procedures and technical terms. People’s names with a word prompt are kept in a notebook. E.g. Mary Smith, lady with a limp.
General health:
General health is fine. I am working 5 days a week 9.00 to 4.30. Drinking 2 L of liquid per day, mostly water. Myra and I follow the principles of a low GI diet; beans, pulses, protein, lots of fruit and vegetables. Walk for an hour both days in the weekends and 30 minutes at least twice during the week. Currently no bone pain or pain relief or restricted movement.
Vitamins:
The vitamins I take are:
A man’s multivitamin: Mon/Wed/Fri.
Vitamin C: 250mg/day.
Cartia: 1/day to thin my blood.
Vitamin B+ complex: For peripheral neuropathy, 1 per day.
Alpha-lipoic-acid: For peripheral neuropathy, 300mg morning and evening.
Glossary:
Cyclophosphamide: Cyclophosphamide is a chemotherapy drug that is given as a treatment for many types of cancer.
Dexamethasone: Dexamethasone is a synthetic adrenocartia steroid. When used in the treatment of myeloma it can trigger the destruction of myeloma cells. My seek and destroy missile.
Allopurin: A drug used to prevent high levels of uric acid in the body, including the increase caused by certain cancer medications. High levels of uric acid may cause gout attacks, kidney stones or renal failure.
Bactrim: Used as an antibiotic during chemotherapy.Aredia: In myeloma Aredia (a bisphosphonate) can delay and reduce the number of skeletal events and reduce bone pain.
This is one of “part 2” a series of postings relating to my autologous stem cell transplant for myeloma. As they are complete the posting series can be found under labels/part 2 [Part 2 link]
After having my second stem cell transplant in August 2008 all was going well, the 100 day tests were positive, IgG was down to normal, I was feeling good.
Then my 3 monthly tests in May 2009 showed my IgG had increased from 10 to 18, measured g/l in NZ (7 to 16 is the normal range). A month later it had risen to 22, the trend was heading up. Except for the proteins all other tests were OK.
This update September 10 2009.
IgG results: g/l (USA mg/dl)
24 Feb 2009 = 10.1 (1010)
18 May 2009 = 18.4 (1840)
16 June 2009 = 22.2 (2220)
21 July 2009 = 21.8 (2180)
18 Aug 2009 = 12.7 (1270)
Treatment:
It was decided to try to reduce the IgG early with chemotherapy before it got too high.
Valcade and Revlimide are not funded by Pharmac in New Zealand; we will try them on a trial or at a later date. A link to Valcade, Revlimide and Pharmac NZ summary is here.
Chemotherapy; cyclophosphamide (Chemo) and dexamethasone (steroid):
First 28 day cycle commenced Wednesday 1st July 2009.
Second 28 day cycle commenced Wednesday 29th July 2009.
Third 28 day cycle commenced Wednesday 26th August 2009.
Cyclophosphamide: 500mg day 1, 8, 15, 22.
Dexamethasone: 20mg day 1, 2, 3, 4 and 15, 16 17, 18.
Allopurinol: 300mg, 1 tablet per day.
Bactrim: 480mg, 2 tablets Mon/Wed/Fri.
As you can see by the 18th Aug result there has been a dramatic drop in IgG.
When taking the dexamethasone I have sleep problems for about 6 days but no other side effects. I get fatigue the day after I take the cyclophosphamide, no nausea and no other side effects. Bowels have been normal. I still have Aredia monthly.
Soft tissue plasmacytoma:
Two soft tissue Plasmacytoma developed on my skull as the IgG increased, a fine needle biopsy confirmed what they were. They were a pronounced lump, no pain or discomfort, getting larger as the IgG increased. Seven days after the chemo commenced they had reduced by 50%, at the end of the first cycle they had reduced by 80%. By the end of the second cycle they had disappeared altogether.
I have had 2 plasmacytoma in bones before when in relapse; June 2007 left humerus, October 2008 right humerus. Both required surgery for titanium rod prosthesis..
Bones:
My inflamed sternum from continual coughing in June slowly reduced, disappearing mid July. That was painful, like a knife in my chest. X-rays showed no fractures.
At the end of July I had an uncontrollable sneezing bout which fractured a rib, right side, at the back mid height. Pain relief went from Panadol to Codeine to Paradex. I had to sleep on my back for 2 weeks and movement was restricted. It took 3 weeks to start to feel comfortable again and reduce the pain relief.
The rib fracture was a reminder that there is still residual bone damage from my initial state at diagnose in 2001 and relapse in 2007/2008 and I need to be careful. The bone damage can be seen on x-rays.
Peripheral neuropathy:
Peripheral neuropathy from 14 months on Thalidomide in 2007/2008 has stayed in my feet though has reduced. Only mild, doesn’t restrict me other than having to wear socks 24/7 as my feet can get cold. To help myself I massage my feet and take vitamin B+ and Alpha-lipoic-acid.
Chemo brain:
Chemo brain from my stem cell transplant in Aug 2008 has subsided, memory is better but I still have a problem remembering names. I still write lists of things to do, work procedures and technical terms. People’s names with a word prompt are kept in a notebook. E.g. Mary Smith, lady with a limp.
General health:
General health is fine. I am working 5 days a week 9.00 to 4.30. Drinking 2 L of liquid per day, mostly water. Myra and I follow the principles of a low GI diet; beans, pulses, protein, lots of fruit and vegetables. Walk for an hour both days in the weekends and 30 minutes at least twice during the week. Currently no bone pain or pain relief or restricted movement.
Vitamins:
The vitamins I take are:
A man’s multivitamin: Mon/Wed/Fri.
Vitamin C: 250mg/day.
Cartia: 1/day to thin my blood.
Vitamin B+ complex: For peripheral neuropathy, 1 per day.
Alpha-lipoic-acid: For peripheral neuropathy, 300mg morning and evening.
Glossary:
Cyclophosphamide: Cyclophosphamide is a chemotherapy drug that is given as a treatment for many types of cancer.
Dexamethasone: Dexamethasone is a synthetic adrenocartia steroid. When used in the treatment of myeloma it can trigger the destruction of myeloma cells. My seek and destroy missile.
Allopurin: A drug used to prevent high levels of uric acid in the body, including the increase caused by certain cancer medications. High levels of uric acid may cause gout attacks, kidney stones or renal failure.
Bactrim: Used as an antibiotic during chemotherapy.Aredia: In myeloma Aredia (a bisphosphonate) can delay and reduce the number of skeletal events and reduce bone pain.
This is one of “part 2” a series of postings relating to my autologous stem cell transplant for myeloma. As they are complete the posting series can be found under labels/part 2 [Part 2 link]
Sunday, May 24, 2009
Myeloma bone pain
My bone pain was typical myeloma bone pain, very painful and never ending.
X-rays showed extensive bone lesions all over, 3 rib fractures, one collapsed and one partially collapsed vertebrae. No wonder I was in pain.
I had great difficulty getting in and out of bed, could only sleep on my back and could barely function. Sneezing and coughing was to be avoided, too painful. Bone lesions in my hips and thighs had me hobbling along.
I knew where all the road pot holes and car park speed humps were, it was too painful to drive over them at speed.
Travelling to and from work was 12km by bus and I learnt when to brace myself to avoid pain. One evening we had a temporary driver who must have been Meatloaf’s brother as he drove like a bat out of hell. That was a painful journey.
The hospital arranged a bed support enabling me to get in and out of bed easier. My wife helped me get dressed and to shower.
My response to treatment of VAD and the bisphosphonate Aredia was excellent and as the bones healed the bone pain reduced. Later I had an autologous stem cell transplant eventually reaching the multiple myeloma plateau stage and no more bone pain.
The biggest relief was to be able to roll over in bed and sleep on my sides and to be able to twist my back when reversing my car to see where I was going. Best of all was to be able to cuddle Myra, squeeze her tight and be free of pain.
When you have myeloma bone pain it never goes away. You take the pain relief, that dulls it down but it’s always there. It can destroy the soul.
Myeloma bone pain hurts, it really, really hurts. It sucks.
X-rays showed extensive bone lesions all over, 3 rib fractures, one collapsed and one partially collapsed vertebrae. No wonder I was in pain.
I had great difficulty getting in and out of bed, could only sleep on my back and could barely function. Sneezing and coughing was to be avoided, too painful. Bone lesions in my hips and thighs had me hobbling along.
I knew where all the road pot holes and car park speed humps were, it was too painful to drive over them at speed.
Travelling to and from work was 12km by bus and I learnt when to brace myself to avoid pain. One evening we had a temporary driver who must have been Meatloaf’s brother as he drove like a bat out of hell. That was a painful journey.
The hospital arranged a bed support enabling me to get in and out of bed easier. My wife helped me get dressed and to shower.
My response to treatment of VAD and the bisphosphonate Aredia was excellent and as the bones healed the bone pain reduced. Later I had an autologous stem cell transplant eventually reaching the multiple myeloma plateau stage and no more bone pain.
The biggest relief was to be able to roll over in bed and sleep on my sides and to be able to twist my back when reversing my car to see where I was going. Best of all was to be able to cuddle Myra, squeeze her tight and be free of pain.
When you have myeloma bone pain it never goes away. You take the pain relief, that dulls it down but it’s always there. It can destroy the soul.
Myeloma bone pain hurts, it really, really hurts. It sucks.
Friday, April 17, 2009
Test results at diagnose
Test results June 2001.
The simple interpretation was; Confirmed with multiple myeloma, compressed vertebra, 3 fractured ribs, bone lesions in skull, pelvis and legs, mildly anaemic, DVT in calf.
The medical version was; diagnosed with multiple myeloma stage III IgG Kappa;
Skeletal survey (x-rays) showed:
Multiple osteolytic lesions in skull, pelvis and both femurs.
Pathological compression fracture in vertebrae T8 and partial compression fracture in vertebrae T3. Pathological fracture of 3 ribs.
Blood tests showed:
Marked abnormalities in serum proteins.
Mild anaemia.
Marked elevation in erythrocyte sedimentation rate (ESR) suggestive of significant systemic pathology.
Haemoglobin (red cells) 122, low, (normal 130 – 175)
WBC (white cells) 8.8, ok, (normal 4.0 – 11.0)
Neut seg (neutrophils) 6.25, ok, (normal 2.2 – 7.5)
Platelets 320, high, (normal 150 – 400)
Creatinine (kidney) 0.082, ok, (normal 0.06 to 0.12)
Calcium (bones) 2.36, ok, (normal 2.10 – 2.60) Thought this would have been higher.
Bence Jones protein 0.03 g/L, present, (normal 0)
IgG = 80 g/L, extreme, (normal 7 to 16 g/L)
ESR 74, extreme, (normal 1 – 20)
Beta 2 microglobulin 0.9 mg/L, ok.
Raised C reactive protein.
Bone marrow aspirate 12% plasma cells. (5% is normal)
Bone marrow trephine 10% plasma cells.
Swollen right calf that a subsequent ultrasound confirmed as a DVT (deep vein thrombosis).
Weight = 70kg (154 lb) had reduced 3kg (7 lb) over the previous 2 months.
Glossary:
Systemic pathology: a disease throughout the body.
ESR: Erythrocyte sedimentation rate. The ESR increases in diseases where antibodies are increased, such as multiple myeloma.
The simple interpretation was; Confirmed with multiple myeloma, compressed vertebra, 3 fractured ribs, bone lesions in skull, pelvis and legs, mildly anaemic, DVT in calf.
The medical version was; diagnosed with multiple myeloma stage III IgG Kappa;
Skeletal survey (x-rays) showed:
Multiple osteolytic lesions in skull, pelvis and both femurs.
Pathological compression fracture in vertebrae T8 and partial compression fracture in vertebrae T3. Pathological fracture of 3 ribs.
Blood tests showed:
Marked abnormalities in serum proteins.
Mild anaemia.
Marked elevation in erythrocyte sedimentation rate (ESR) suggestive of significant systemic pathology.
Haemoglobin (red cells) 122, low, (normal 130 – 175)
WBC (white cells) 8.8, ok, (normal 4.0 – 11.0)
Neut seg (neutrophils) 6.25, ok, (normal 2.2 – 7.5)
Platelets 320, high, (normal 150 – 400)
Creatinine (kidney) 0.082, ok, (normal 0.06 to 0.12)
Calcium (bones) 2.36, ok, (normal 2.10 – 2.60) Thought this would have been higher.
Bence Jones protein 0.03 g/L, present, (normal 0)
IgG = 80 g/L, extreme, (normal 7 to 16 g/L)
ESR 74, extreme, (normal 1 – 20)
Beta 2 microglobulin 0.9 mg/L, ok.
Raised C reactive protein.
Bone marrow aspirate 12% plasma cells. (5% is normal)
Bone marrow trephine 10% plasma cells.
Swollen right calf that a subsequent ultrasound confirmed as a DVT (deep vein thrombosis).
Weight = 70kg (154 lb) had reduced 3kg (7 lb) over the previous 2 months.
Glossary:
Systemic pathology: a disease throughout the body.
ESR: Erythrocyte sedimentation rate. The ESR increases in diseases where antibodies are increased, such as multiple myeloma.
Subscribe to:
Posts (Atom)
