About this time last year I was interviewed by a journalist doing research for an article to be placed in the Leukaemia and Blood Foundation of New Zealand (LBF) magazine winter edition. LBF wanted a multiple myeloma patient who had myeloma long term and was willing to tell their story.
Encouraging others during their myeloma journey and sharing my experience has always been one of my aspirations. That was the motivation for me to agree to the interview.
I found it a step back 8 years into my myeloma past reviving many memories of my myeloma journey. Myra was present during the interview prompting me when my memory failed and sharing in the story.
Going through that whole process was another reason that motivated me to commence my blog.
A link to the magazine article (edited and 1.3mb) is here. LBF magazine.
A link to the full version (recommended) is here. Sid's story.
Showing posts with label myeloma. Show all posts
Showing posts with label myeloma. Show all posts
Wednesday, December 9, 2009
Sunday, June 28, 2009
Myeloma beginner's help
The internet has a great source of information for newly diagnosed myeloma patients.
I recommend two articles found on the North Texas Myeloma support group web page. Unfortunately I cannot verify the date they were written or if they have been updated since publication, my emails were unanswered. Access the articles on the North Texas Myeloma support group web page by control/click the title.
Living successfully with multiple myeloma by Peter Tischler.
An informative article listing points that one must know and do to best ensure that one will survive myeloma with the quality of life one wants. I discovered Peter’s article in 2005, four years after my diagnose. Fortunately I had been doing most of what Peter suggests so just needed to fine tune my approach.
His main points are:
1. Take care of your kidneys.
2. Avoid infections.
3. Form a survivor team.
4. Don’t be a good patient.
5. Educate yourself. (this may be you, your partner or a family member)
6. Maintain your immune system.
7. Keep medical records.
8. Know your doctor’s limitations.
9. Early warning system – avoiding crises.
Myeloma 101 by Peter Tischler.
Myeloma 101 explains the basics of myeloma, diagnostic tests that are used and treatments for myeloma.
There are three levels of explanation: L1 simple explanation, L2 more detail, L3 more technical stuff.
Contents include:
Myeloma 101.
What is multiple myeloma?
The myeloma cell.
Myeloma protein.
The supporting cast.
How myeloma affects us.
Different types of myeloma.
Staging myeloma.
Testing – Blood tests.
Testing – Urine tests
Testing – Scans.
Testing – Other.
Treatment – Overview.
Treatment – Standard/frontline
Treatment – Maintenance.
Treatment – Transplants.
Tuesday, April 7, 2009
What is multiple myeloma
This could get complicated so I revert back to one of my life’s philosophies KISS “keep it simple Sid”.
This is a simple explanation from myeloma UK:
Myeloma, also known as multiple myeloma, is a type of bone marrow cancer arising from plasma cells, which are normally found in the bone marrow. Plasma cells form part of your immune system.
Normal plasma cells produce antibodies (also called immunoglobulins) to help fight infection. In myeloma, the abnormal plasma cells release only one type of antibody known as paraprotein which has no useful function. It is often through the measurement of this paraprotein that myeloma is diagnosed and monitored.
Bone marrow is the 'spongy' material found in the centre of larger bones in the body. As well as being home to plasma cells, the bone marrow is the centre of blood cell production (red blood cells, white blood cells and platelets).
In myeloma, the DNA of a plasma cell is damaged causing it to become malignant or cancerous. These abnormal plasma cells are known as myeloma cells. Unlike many cancers, myeloma does not exist as a lump or tumour. Instead, the myeloma cells normally divide and expand within the bone marrow.
Myeloma affects multiple (hence multiple myeloma) places in the body where bone marrow is normally active in an adult, i.e. within the bones of the spine, skull, pelvis, the rib cage, and the areas around the shoulders and hips. The areas usually not affected are the extremities: that is the hands, feet, and lower arm / leg regions. This is very important since the function of these critical areas is usually fully retained.
Most of the medical problems related to myeloma are caused by the build up of myeloma cells in the bone marrow and the presence of the paraprotein in the blood or in the urine. Common problems are bone pain, bone fractures, tiredness (due to anaemia), frequent or recurrent infections (such as bacterial pneumonia, urinary tract infections and shingles), kidney damage and hypercalcaemia.
There have been many new developments in the treatment and management of myeloma over the last few years that have had a significant impact on the way myeloma is treated. Research is on-going to develop new treatments and to use existing treatments in a better, more effective way.
Treatments for myeloma can be very effective at halting its progress, controlling the symptoms, and improving quality of life, but they are not able to cure it. Even after successful treatment, regular monitoring is needed in case the myeloma comes back.
More in depth information can be found:
Here (myeloma UK)
Or here (multiple myeloma research foundation USA)
Glossary:
Antibodies: Naturally produced proteins in the blood that destroy or neutralise specific toxins or infections such as viruses.
Hypercalcemia: Abnormally high levels of calcium in the blood.
This is a simple explanation from myeloma UK:
Myeloma, also known as multiple myeloma, is a type of bone marrow cancer arising from plasma cells, which are normally found in the bone marrow. Plasma cells form part of your immune system.
Normal plasma cells produce antibodies (also called immunoglobulins) to help fight infection. In myeloma, the abnormal plasma cells release only one type of antibody known as paraprotein which has no useful function. It is often through the measurement of this paraprotein that myeloma is diagnosed and monitored.
Bone marrow is the 'spongy' material found in the centre of larger bones in the body. As well as being home to plasma cells, the bone marrow is the centre of blood cell production (red blood cells, white blood cells and platelets).
In myeloma, the DNA of a plasma cell is damaged causing it to become malignant or cancerous. These abnormal plasma cells are known as myeloma cells. Unlike many cancers, myeloma does not exist as a lump or tumour. Instead, the myeloma cells normally divide and expand within the bone marrow.
Myeloma affects multiple (hence multiple myeloma) places in the body where bone marrow is normally active in an adult, i.e. within the bones of the spine, skull, pelvis, the rib cage, and the areas around the shoulders and hips. The areas usually not affected are the extremities: that is the hands, feet, and lower arm / leg regions. This is very important since the function of these critical areas is usually fully retained.
Most of the medical problems related to myeloma are caused by the build up of myeloma cells in the bone marrow and the presence of the paraprotein in the blood or in the urine. Common problems are bone pain, bone fractures, tiredness (due to anaemia), frequent or recurrent infections (such as bacterial pneumonia, urinary tract infections and shingles), kidney damage and hypercalcaemia.
There have been many new developments in the treatment and management of myeloma over the last few years that have had a significant impact on the way myeloma is treated. Research is on-going to develop new treatments and to use existing treatments in a better, more effective way.
Treatments for myeloma can be very effective at halting its progress, controlling the symptoms, and improving quality of life, but they are not able to cure it. Even after successful treatment, regular monitoring is needed in case the myeloma comes back.
More in depth information can be found:
Here (myeloma UK)
Or here (multiple myeloma research foundation USA)
Glossary:
Antibodies: Naturally produced proteins in the blood that destroy or neutralise specific toxins or infections such as viruses.
Hypercalcemia: Abnormally high levels of calcium in the blood.
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