My mom has been a regular at the doctors' offices this month. Lots of check ups and check ins to be done. The original plan for her current treatments was 3 cycles of Revlimid then re-evaluate. Over time her Greenwich doctor has upped it to 4 cycles then take a break. But because my mom has been responding so well her Yale doctor wants her to continue on with even more cycles. He figures if it is killing cancer and her body is handling it, why stop when you can kill more.
Wednesday Mom went in to begin cycle number four. They always do blood work. Checking for cancer, of course, but also checking her white blood count, red blood count and such to make sure her body is still handling it well. As they were preparing the vast amounts of paper work it takes to get Revlimid, her doctor got the results in and stopped everything. Apparently her white blood cells are down to 1000, a normal range is 4500-10000. Our white blood cells help us fight infection. Right now my mom has no ability to fight off a cold or any other type of infection. They gave her a shot of Neuprogen to help bring white blood cells from her bone marrow to her blood. The same stuff from her stem cell transplant. She gets another week of rest, well another week without treatments. Next Wednesday, she'll go back to Greenwich to find out how her body is doing. Meanwhile, my mom is being very cautious and trying to keep herself well. I may try to go with her next week to make sure another set of ears are there. Sorry to cut this short but my girls are not cooperating. I'll post again after next week's appointment.
Friday, November 7, 2008
Tuesday, September 9, 2008
On The Mend
My mom is doing much better. Yesterday she seemed to have a turn around and today she's back on her feet, even babysitting grand kids!! I'm sure the cold will linger a bit, she's still coughing. She's able to sit up, walk around and all the other things that only days ago seemed too much.
She saw her oncologist today to start round 2 of her drug treatments. She'll have a total of 3 rounds-each lasting a month. I believe she did blood work today so hopefully next week I'll be able to update you on her numbers.
Thank you all for your prayers and kind words. God Bless!!
She saw her oncologist today to start round 2 of her drug treatments. She'll have a total of 3 rounds-each lasting a month. I believe she did blood work today so hopefully next week I'll be able to update you on her numbers.
Thank you all for your prayers and kind words. God Bless!!
Sunday, September 7, 2008
A Lesson for Winter??
We had a nice trip to Maine last week. Unfortunately, either my girls or the hot/cold weather gave my mom a cold. If it was the cold my girls and I had, then it only manifested itself in us as runny noses. I pumped us full of Airborne and we all bounced back quickly-within days. But because of my mom's cancer and the current treatments she's on her immune system is that of an infants on formula - in other words weak. She's very sick right now. Even with all the cold medicines and vitamins we bought her, her body isn't able to fight it off.
Please pray earnestly for healing. I'll try to update in a few days.
Please pray earnestly for healing. I'll try to update in a few days.
Friday, August 29, 2008
Good Update
My mom had her Zometa treatment this week and got back blood work results. After only a week on the Revlimid and Dexamethasone treatments, her cancer is responding and her numbers dropped from .7 to .4. (That's a good thing.) These new drugs aren't as toxic and so her body seems to be handling it well. Wednesdays are her Dexamethasone days. Usually Thursday she sees a slight rise in her blood sugars but nothing to worry about -especially since she isn't eating many bagels these days. Her energy level is pretty high and she's able to do all the activities she did before treatments started. I'll keep you posted on any other developments.
Thank you for all your prayers and support!
Thank you for all your prayers and support!
Monday, August 18, 2008
Mom's New Treatments Began
It's been an interesting few weeks. At the end of July, around when this blog started we found out my mom's cancer had grown a significant bit. We have known for awhile that it's been growing but it's been slow enough that the doctor's haven't been too concerned. At her last appointment with Dr. Cooper it almost doubled (I have to double check with my mom about that). So he wanted her to start treatments again. When we went to Dr. Hollister to discuss and begin the treatments, he wasn't as convinced so ordered the full sha-bang: MRI, skeletal scan, and more blood work. (I'm surprised there is any cancer left with all the blood she's had taken out of her lately.)
It took about two weeks for all the testing to be done and results to be in. They showed a small spike in the cancer count, not as high as Dr. Cooper's findings but still a jump. We also found out she has some new lesions, a pesky one in her right hip bone which explains a lot of the pain she's been having and a new lesion in her 'leg of steel' femur. Amazingly the old lesions have healed over-which I didn't know would happen. Praise God for that. So it is official, she'll begin treatments of Revlimid and Dexamethasone.
They have caught the cancer early this time. These treatments are to kill the cancer and are not done with an intention of then doing another stem cell transplant. It's been about a week on the treatments and my mom's biggest complaint has been fatigue (which is to be expected). Also, she's been having difficulty with her blood sugar due to the dexamethasone, but that to was some what expected as well. She's holding in there pretty well. I know this because last Wednesday she watched her three grand kids (two-3 year olds and a 20 month old) for the whole day. Not a task for the weary.
To learn more about her new treatments I'll send you to the MMRF once again because they have it written out pretty clearly. That link should take you directly to their Revlimid page.
On a side note: The tests also showed that all the pain she has in her back is due to arthritis not cancer lesions. For now that's the latest. Please keep her in your prayers.
It took about two weeks for all the testing to be done and results to be in. They showed a small spike in the cancer count, not as high as Dr. Cooper's findings but still a jump. We also found out she has some new lesions, a pesky one in her right hip bone which explains a lot of the pain she's been having and a new lesion in her 'leg of steel' femur. Amazingly the old lesions have healed over-which I didn't know would happen. Praise God for that. So it is official, she'll begin treatments of Revlimid and Dexamethasone.
They have caught the cancer early this time. These treatments are to kill the cancer and are not done with an intention of then doing another stem cell transplant. It's been about a week on the treatments and my mom's biggest complaint has been fatigue (which is to be expected). Also, she's been having difficulty with her blood sugar due to the dexamethasone, but that to was some what expected as well. She's holding in there pretty well. I know this because last Wednesday she watched her three grand kids (two-3 year olds and a 20 month old) for the whole day. Not a task for the weary.
To learn more about her new treatments I'll send you to the MMRF once again because they have it written out pretty clearly. That link should take you directly to their Revlimid page.
On a side note: The tests also showed that all the pain she has in her back is due to arthritis not cancer lesions. For now that's the latest. Please keep her in your prayers.
Saturday, August 2, 2008
What the heck is Multiple Myeloma?
The question bares repeating...what the heck is multiple myeloma? Three years ago I knew all the lingo, I could explain almost anything you'd have a question on. Once my mom was 'better' and Bella came along, I needed that brain room for mom stuff. You know figuring out how to cook, clean and do laundry while entertaining kids and fending off tantrums...ahhh motherhood.
I confess this post is two-fold: to give you information and to jog my memory. Most of the following information was obtained from http://www.multiplemyeloma.org/: a great website and a great foundation.
Multiple Myeloma (MM) is a cancer of the plasma cells in the blood. The plasma cells are the part are the blood that produce antibodies. It was explained to us: when you get a vaccine as a child the body learns to fight off the weakened disease by producing antibodies which then float around in your blood-and are continually being reformed- waiting to attack the virus if it comes back. There are lots of different types of antibodies/plasma cells in the blood: Polio, Mumps, Measles, etc. In MM, some how the cells are genetically damaged and start producing malignant plasma cells or myeloma cells. They do not function properly and start increasing so rapidly that there is too much of this one, useless antibody in the body. They start 'crowding out' the normal, functional antibodies and prevent production of more normal, functional antibodies, so the immune system can't fight off the 'invasion.'
As the these tumors grow they invade the outer hard part of the bone and make holes or "lesions". They are normally found in the larger bones of the body: Vertebrae, Skull, Femur, and Ribs. My mom had two large lesions in her femur, several in her ribs and a large lesion in her lower vertebra. All the myeloma cells are the same and are called paraproteins. Which is what they are measuring during the blood test my mom gets on a regular basis. This is new knowledge for my precious brain. An important part of MM is being an involved patient. We are always being told to know your blood work. Well, we really wanted to be active and involved but we could never figure out what the heck the tests were called. Dr. Hollister and Dr. Cooper ran different tests so we could never get straight answers it seemed. But now we know we want the paraprotein measurement (and when we ask for that we are asking for the number of myeloma cells in her blood). I feel a little smarter right now-WHOO HOO.
Here's an example of an x-ray of someone who has MM lesions. My mom's x-ray looked similar to the right bone, only with two big 'bites' taken out.
I got this picture from www.multiplemyeloma.org and I hope it was okay to copy to this blog.
They still do not have a cause for this type of cancer. It happens more in the elderly (except my mom's case...she's still a spring chick:) ) so they think it might be related to the aging process or a build up of toxins in the body. We can't say for sure why my mom got this cancer because she doesn't fit the usually bill: male, African American, over 70, industrial worker or atom bomb survivor.
There really aren't any symptoms for early stages of MM, so usually it isn't diagnosed until later stages. Symptoms for later stages include kidney problems, pain (my mom), fatigue, recurring infections, and nervous system dysfunction (which I haven't heard of before).
Lots of tests are done for diagnosis, classification and staging (determining how bad). I won't go into the whole list because chances are you don't really care, unless you think you might have it. Basically, there are several different blood tests, urine samples, x-rays, MRI and a bone marrow biopsy. There are 3 stages and my mom's initial diagnosis was stage 3, meaning she had it pretty bad. This is reminding me to ask Dr. Hollister exactly what type she has and her current classification and stage and all that, hopefully my mom remembers. I gotta start making a list.
I hope this helped answer some questions about my mom's cancer. If you have anymore, feel free to email me and I'll hunt down some answers.
I confess this post is two-fold: to give you information and to jog my memory. Most of the following information was obtained from http://www.multiplemyeloma.org/: a great website and a great foundation.
Multiple Myeloma (MM) is a cancer of the plasma cells in the blood. The plasma cells are the part are the blood that produce antibodies. It was explained to us: when you get a vaccine as a child the body learns to fight off the weakened disease by producing antibodies which then float around in your blood-and are continually being reformed- waiting to attack the virus if it comes back. There are lots of different types of antibodies/plasma cells in the blood: Polio, Mumps, Measles, etc. In MM, some how the cells are genetically damaged and start producing malignant plasma cells or myeloma cells. They do not function properly and start increasing so rapidly that there is too much of this one, useless antibody in the body. They start 'crowding out' the normal, functional antibodies and prevent production of more normal, functional antibodies, so the immune system can't fight off the 'invasion.'
As the these tumors grow they invade the outer hard part of the bone and make holes or "lesions". They are normally found in the larger bones of the body: Vertebrae, Skull, Femur, and Ribs. My mom had two large lesions in her femur, several in her ribs and a large lesion in her lower vertebra. All the myeloma cells are the same and are called paraproteins. Which is what they are measuring during the blood test my mom gets on a regular basis. This is new knowledge for my precious brain. An important part of MM is being an involved patient. We are always being told to know your blood work. Well, we really wanted to be active and involved but we could never figure out what the heck the tests were called. Dr. Hollister and Dr. Cooper ran different tests so we could never get straight answers it seemed. But now we know we want the paraprotein measurement (and when we ask for that we are asking for the number of myeloma cells in her blood). I feel a little smarter right now-WHOO HOO.
Here's an example of an x-ray of someone who has MM lesions. My mom's x-ray looked similar to the right bone, only with two big 'bites' taken out.
I got this picture from www.multiplemyeloma.org and I hope it was okay to copy to this blog.
They still do not have a cause for this type of cancer. It happens more in the elderly (except my mom's case...she's still a spring chick:) ) so they think it might be related to the aging process or a build up of toxins in the body. We can't say for sure why my mom got this cancer because she doesn't fit the usually bill: male, African American, over 70, industrial worker or atom bomb survivor.
There really aren't any symptoms for early stages of MM, so usually it isn't diagnosed until later stages. Symptoms for later stages include kidney problems, pain (my mom), fatigue, recurring infections, and nervous system dysfunction (which I haven't heard of before).
Lots of tests are done for diagnosis, classification and staging (determining how bad). I won't go into the whole list because chances are you don't really care, unless you think you might have it. Basically, there are several different blood tests, urine samples, x-rays, MRI and a bone marrow biopsy. There are 3 stages and my mom's initial diagnosis was stage 3, meaning she had it pretty bad. This is reminding me to ask Dr. Hollister exactly what type she has and her current classification and stage and all that, hopefully my mom remembers. I gotta start making a list.
I hope this helped answer some questions about my mom's cancer. If you have anymore, feel free to email me and I'll hunt down some answers.
Friday, August 1, 2008
The Journey Thus Far, Part 3
Click Here To Read Part 1 or Part 2
The stem cell transplant was in August 2005, I believe. It was a month long process that required my mom to stay at a hotel in New Haven, in case there was an emergency. I was her caregiver during this time.
First off, going to Yale/New Haven was a eye opener. I'd never heard of this type of cancer and most people I talk to haven't either. Visiting Dr. Hollister's office wasn't a good judge because there are three doctors in the practice and I believe they all treat different types of cancer. But the Yale clinic was full of patients many whom has this type of cancer. Each day the chairs (at least 20 of them) were full of new people coming in for various treatments. This was just the out patient clinic, there were also people hospitalized due to reactions to treatments. Thank you Lord we never had to visit this section. My next post will be all about MM-for those who don't know what it is.
The stem cell process starts with moving the stem cells from the bone marrow to the blood. This is done through daily injections of a drug Neupogen. For about 3 or 4 days, we'd go to the hospital early in the morning to have blood work done to find out the number of stem cells in the blood. We'd wait and wait (I knitted, my mom slept) until the results came back. If it wasn't enough, mom got another injection and we'd go back to the hotel. The side effects of this process is bone pain because the stem cells are being drawn out of the marrow which just sounds painful. These days moved very slowly. I believe there were a few tests to make sure her body could handle the collection. Once her numbers came back in 'go' range she had a semi-permanent needle put in her neck/chest-I don't remember what this is called a PIC line or something like that. Then the next day we went to a new section of the hospital...Apheresis.
This is were her stem cells were harvested through a dialysis type process. She'd sit attached to a machine and rest while I did more knitting. The nurses here were SO nice, it made me want to go into this area of medicine. They'd process her cells, taking out the bad stuff and froze them to be injected later. Once they had enough, I think it took 3 days, it was time for the really hard stuff: high-dose chemotherapy. But before I get to that I wanted to add that we met two other women in the apheresis unit who were going through the same thing. The three amigos. It was such a blessing to have someone for my mom to share this part of the journey with. Unfortunately, both women had complications and were admitted into the hospital and we never saw them again.
When high-dose chemo day came I remember us both feeling nervous. When they came over with mom's 'jar' we apprehensively looked at each other and I think one of us said, "There no turning back now." I'm not sure what exactly I was expecting from the chemo. She got her injections, we did some more waiting and then went home. Her hair didn't fall out, she didn't start throwing up, there was nothing different about that day. Of course the effects came eventually and then my work began.
I can't remember if it was the same day or a few days later, but eventually her stem cells were put back in. I'll call that day "cream corn" day because one of the effects of the freezing/thawing process was a strong cream corn odor that lingered. No amount of warning prepared me for that. Once the smell hit my nose I just smiled, it really does smell like cream corn, it's amazing.
The next weeks were filled with daily hospital visits to check mom's blood numbers, lots of sleepless nights, complicated pill regiments, and a hotel room change. The effect of the chemo weren't fun for my mom and it was difficult at times knowing what pain she must have been in. There was lots of monitoring to be done, my main job was to keep watch for fever. And my mom will attest that I took my job very seriously. I did everything short of wake her up to take her temperature. We had to wait until my mom's blood count returned to normal and for a number of days she was just below. It seemed the day would never come, but finally it did approval to go home!!!
There were lots of doctor visits and blood work after we left the hospital but eventually we found out my mom was in partial remission. The only drugs she had to continue on were the Zometa injections (which she still gets).
The past 3 years have been spent in that partial remission. She's had to check in often with her regular oncologist and her transplant specialist. They've been happy with her progress but there has been a slow rise in the cancer numbers. This week they saw a bigger jump in her numbers and are considering starting treatments again. The numbers are still low but seem to be on a steady upward trend. We knew this would happen eventually and are now facing the next steps we have to take. Thus this blog started.
The stem cell transplant was in August 2005, I believe. It was a month long process that required my mom to stay at a hotel in New Haven, in case there was an emergency. I was her caregiver during this time.
First off, going to Yale/New Haven was a eye opener. I'd never heard of this type of cancer and most people I talk to haven't either. Visiting Dr. Hollister's office wasn't a good judge because there are three doctors in the practice and I believe they all treat different types of cancer. But the Yale clinic was full of patients many whom has this type of cancer. Each day the chairs (at least 20 of them) were full of new people coming in for various treatments. This was just the out patient clinic, there were also people hospitalized due to reactions to treatments. Thank you Lord we never had to visit this section. My next post will be all about MM-for those who don't know what it is.
The stem cell process starts with moving the stem cells from the bone marrow to the blood. This is done through daily injections of a drug Neupogen. For about 3 or 4 days, we'd go to the hospital early in the morning to have blood work done to find out the number of stem cells in the blood. We'd wait and wait (I knitted, my mom slept) until the results came back. If it wasn't enough, mom got another injection and we'd go back to the hotel. The side effects of this process is bone pain because the stem cells are being drawn out of the marrow which just sounds painful. These days moved very slowly. I believe there were a few tests to make sure her body could handle the collection. Once her numbers came back in 'go' range she had a semi-permanent needle put in her neck/chest-I don't remember what this is called a PIC line or something like that. Then the next day we went to a new section of the hospital...Apheresis.
This is were her stem cells were harvested through a dialysis type process. She'd sit attached to a machine and rest while I did more knitting. The nurses here were SO nice, it made me want to go into this area of medicine. They'd process her cells, taking out the bad stuff and froze them to be injected later. Once they had enough, I think it took 3 days, it was time for the really hard stuff: high-dose chemotherapy. But before I get to that I wanted to add that we met two other women in the apheresis unit who were going through the same thing. The three amigos. It was such a blessing to have someone for my mom to share this part of the journey with. Unfortunately, both women had complications and were admitted into the hospital and we never saw them again.
When high-dose chemo day came I remember us both feeling nervous. When they came over with mom's 'jar' we apprehensively looked at each other and I think one of us said, "There no turning back now." I'm not sure what exactly I was expecting from the chemo. She got her injections, we did some more waiting and then went home. Her hair didn't fall out, she didn't start throwing up, there was nothing different about that day. Of course the effects came eventually and then my work began.
I can't remember if it was the same day or a few days later, but eventually her stem cells were put back in. I'll call that day "cream corn" day because one of the effects of the freezing/thawing process was a strong cream corn odor that lingered. No amount of warning prepared me for that. Once the smell hit my nose I just smiled, it really does smell like cream corn, it's amazing.
The next weeks were filled with daily hospital visits to check mom's blood numbers, lots of sleepless nights, complicated pill regiments, and a hotel room change. The effect of the chemo weren't fun for my mom and it was difficult at times knowing what pain she must have been in. There was lots of monitoring to be done, my main job was to keep watch for fever. And my mom will attest that I took my job very seriously. I did everything short of wake her up to take her temperature. We had to wait until my mom's blood count returned to normal and for a number of days she was just below. It seemed the day would never come, but finally it did approval to go home!!!
There were lots of doctor visits and blood work after we left the hospital but eventually we found out my mom was in partial remission. The only drugs she had to continue on were the Zometa injections (which she still gets).
The past 3 years have been spent in that partial remission. She's had to check in often with her regular oncologist and her transplant specialist. They've been happy with her progress but there has been a slow rise in the cancer numbers. This week they saw a bigger jump in her numbers and are considering starting treatments again. The numbers are still low but seem to be on a steady upward trend. We knew this would happen eventually and are now facing the next steps we have to take. Thus this blog started.
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