I'm really missing working. I was all set to start a new job last week but opted out since I don't really know how it's going to go with Richard.
He started the high dose Solu- Medrol on Monday. I think he seems more tired and almost lethargic; sleeps all the time. His thinking is a little fuzzy as well. He doesn't want to drive anymore, so I take him to radiation every day...not a problem since I certainly have the time.
The plasmacytoma on his clavicle is smaller which is good, but we don't know what is happening to the one in his abdomen. He will get labwork on Monday. I'm wondering if the lethargy is from renal failure, which is a likely possibility if the abdominal mass continues to put pressure on his kidneys.
It's difficult to fill the days, especially when Richard sleeps so much. Guess I can always clean something, in fact I did clean the inside of the fridge today!
It's a waiting game.
Friday, January 30, 2009
Thursday, January 29, 2009
New Myeloma Blog
I found another new myeloma blog. Nick is forty and just starting treatment. Best to him and his family.
Sunday, January 25, 2009
Next
We met with Dr. W, Richard's local oncologist on Thursday. He outlined the high dose steroid regimen, emphasizing the potential for serious, life threatening side effects.
Insomnia, anorexia, intestinal perforation, extreme muscle weakness, susceptibility to infection and others.
Any gains will be modest, maybe a couple of months, maybe some shrinkage of the abdominal plasmacytoma. Dr. W. urged him to consider the decision carefully.
Hospice is another option, but Richard wants to give the Beast one last thump, so we're going with it.
Thanks to all who have left comments. We appreciate your good wishes.
Insomnia, anorexia, intestinal perforation, extreme muscle weakness, susceptibility to infection and others.
Any gains will be modest, maybe a couple of months, maybe some shrinkage of the abdominal plasmacytoma. Dr. W. urged him to consider the decision carefully.
Hospice is another option, but Richard wants to give the Beast one last thump, so we're going with it.
Thanks to all who have left comments. We appreciate your good wishes.
Friday, January 23, 2009
Happy Anniversary
Today is our 38th wedding anniversary. Sad to say that it may be the last. But I am so grateful for the time we have had together.
Wednesday, January 21, 2009
Starting the Last Part
We've returned from Mayo; most likely for the last time. Richard's numbers are all way off the chart. I'll add them at the end for those who,like me,like numbers. The deal breaker is the huge plasmacytoma in his abdomen that is displacing his bladder and starting to cause renal obstruction.
The options include a very toxic multi drug chemo regimen that requires hospitalization during administration and extended transfusion support. It's guaranteed to knock the Beast on its ass for a short time, but this Beast is too strong and will return...guaranteed.
Actimid (pomalidomide) is another option, but not likely to help since the Beast has already figured a way around both thalidomide and Revlimid.
High dose steroids (IV Solumedrol) may shrink the mass and possibly beat the Beast back to a level where other things could be considered, but this scenario is not likely.
Richard is speaking with the local oncologist today about the IV steroids, so will add more about that later.
My heart is breaking.....
Thursday, January 15, 2009
What's Coming
Richard just received his appointment letter from Mayo for the 19th and 20th. Several tests have been added, so now it will be a two day ordeal.
Again, there's the annoying 24 hour urine. I wonder why they don't just go with the Free-Lite, since it is so much more sensitive.
There is no bone marrow biopsy scheduled, which is good, although Mayo does them with conscious sedation, and according to Richard, they are totally painless.
Most of the additional tests are imaging tests which I suspect are to look for additional plasmacytomas both in the bone marrow and outside of it. The imaging tests include chest X ray, skeletal survey, MRI of unspecified body parts, I assume the spine and pelvis, and a PET scan which is something new for Richard.
I am familiar with PET myocardial perfusion scans for obese cardiac patients, but that's about the extent of my knowledge...so of course I did some research.
PET Scan Basics
PET stands for positron emission tomography. A radioactive substance containing glucose is injected into the circulation. After an hour or so, when the radioactive substance has had time to circulate throughout the body, the body is scanned.
Very simply put, glucose is the metabolic fuel for all the body cells. Cancer cell metabolism is more rapid than that of normal cells, since cancer is a disease of disordered and rapid cell division. The scan can show areas where abnormally increased areas of glucose are being metabolized...the areas where there is active cancer.
A PET scan is very sensitive, meaning it can show very small areas of cancer before they are detectable by other imaging studies such as Xray or MRI, or before there are any physical symptoms.
A major use of PET scanning is to look for cancer metastases at diagnosis or cancer recurrences after treatment.
PET scans are quite expensive and Medicare just recently approved them for myeloma.
More detailed info here.
PET Scans and Myeloma
Often a PET scan is done as part of the diagnostic work up for myeloma to get a baseline evaluation of myeloma activity in or out of the bone marrow that may be missed by a skeletal survey or MRI. When Richard was diagnosed in 1999, he did not have a PET scan.
Soft tissue plasmacytomas are not a good pronostic factor at diagnosis and I can only suppose that the appearance of a plasmacytoma in soft tissue nine years after diagnosis cannot be a good thing. :(
PET scan of myeloma patient with "severe, diffuse disease"
Again, there's the annoying 24 hour urine. I wonder why they don't just go with the Free-Lite, since it is so much more sensitive.
There is no bone marrow biopsy scheduled, which is good, although Mayo does them with conscious sedation, and according to Richard, they are totally painless.
Most of the additional tests are imaging tests which I suspect are to look for additional plasmacytomas both in the bone marrow and outside of it. The imaging tests include chest X ray, skeletal survey, MRI of unspecified body parts, I assume the spine and pelvis, and a PET scan which is something new for Richard.
I am familiar with PET myocardial perfusion scans for obese cardiac patients, but that's about the extent of my knowledge...so of course I did some research.
PET Scan Basics
PET stands for positron emission tomography. A radioactive substance containing glucose is injected into the circulation. After an hour or so, when the radioactive substance has had time to circulate throughout the body, the body is scanned.
Very simply put, glucose is the metabolic fuel for all the body cells. Cancer cell metabolism is more rapid than that of normal cells, since cancer is a disease of disordered and rapid cell division. The scan can show areas where abnormally increased areas of glucose are being metabolized...the areas where there is active cancer.
A PET scan is very sensitive, meaning it can show very small areas of cancer before they are detectable by other imaging studies such as Xray or MRI, or before there are any physical symptoms.
A major use of PET scanning is to look for cancer metastases at diagnosis or cancer recurrences after treatment.
PET scans are quite expensive and Medicare just recently approved them for myeloma.
More detailed info here.
PET Scans and Myeloma
Often a PET scan is done as part of the diagnostic work up for myeloma to get a baseline evaluation of myeloma activity in or out of the bone marrow that may be missed by a skeletal survey or MRI. When Richard was diagnosed in 1999, he did not have a PET scan.
Soft tissue plasmacytomas are not a good pronostic factor at diagnosis and I can only suppose that the appearance of a plasmacytoma in soft tissue nine years after diagnosis cannot be a good thing. :(
PET scan of myeloma patient with "severe, diffuse disease"
Thursday, January 08, 2009
Biopsy Results
The biopsy results are in and there are no real surprises. The mass is a plasmacytoma. Radiation treatment starts next week. The radiation only treats this mass and does nothing to change the course of the disease. Richard has had radiation before on bone tumors for pain relief.
Overall, this is not good news because it means the current drug treatment is no longer effective; the Beast is gaining a stronger foothold. Richard has a Mayo appointment on Jan 19. Hopefully there are some options left.
Thursday, January 01, 2009
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