Home from the Hospital

Rebecca made it home from the hospital today. She took the last antibiotic this morning so maybe the diarrhea will stop. She ate a ¼ cup of jello today. That is more than she ate yesterday.


I had to get prescriptions filled today after we got home. On the third try I found a pharmacy that had all the medicines but not the full quantity. So I have to go back in a few days and get the rest of them.

She is going to try to quit the oxycodone since she has not had any in 10 days and should be over the withdrawals. She didn’t seem to have much pain today. We do have some hydrocodone if she needs it. She hasn’t had any in 48 hours.

She has some inhalers for COPD. She had been a heavy smoker for over 30 years. She has not smoked in 10 days and is going to try to quit. She seems to be more serious this time since she knows her lungs are damaged.

Back Pain is Back

The EEG/video machine was removed yesterday. The neurologist has her on three anti seizure medicines. He plans to play around with the dosage of these the next few weeks to find what works best. He doesn’t know why she had seizures. Thinks the big one she had last week may have been caused by abruptly stopping the Lyrica.


Rebecca has eaten very little in the last 10 days. She went a little over 24 hours without having diarrhea. She had a yogurt and two hours later had diarrhea. They are going to quit the IV antibiotic and switch to a oral one. Maybe that will be better but I think it will be best when she quits taking it altogether. She is also having stomach pain.

The back pain came back last night. She has had some today also. She wanted to start back on the oxycodone. They first gave her Tylenol. That didn’t do much. They are going to try Lortab now. Since she has not had any oxycodone in 10 days it would be a good time to quit that. She has been taking a high dose of that for over a year.

The plan is to get out of here on Friday.

Moved Out of the ICU

Rebecca was moved from the NICU to a room on the neurology floor Sunday night. This room is on the same floor and wing as the NICU. I sleep on the pull out chair in her room.

She has been recovering more of her memory. She seems almost normal. Still some short term memory loss. She can’t remember where we currently live but knows where we lived 35 years ago.

I saw the neurologist yesterday. He was impressed by how much she has come back. After looking at the brain waves he indicated there is still some activity he would like to see a little calmer. He is going to increase her medication some. She is still connected to the EEG/video machine.

A blood sample was taken last Thursday for the Freelite Test. The Lambda free light chain proteins decreased from 33 mg/dL a couple of months ago to 27.6 mg/dL now. We were concerned that the cancer may have taken a jump. It appears to still be in check. Maybe we can delay any chemo until she is feeling better. She has been having diarrhea for about three days. The nausea started yesterday. Due to a urinary tract infection they have been giving her antibiotics. I think they are giving her about three different ones which may be causing the stomach problems.

They could not draw blood from her power port yesterday. A nurse came by later and did the TPA treatment on it and got it to draw blood again. This keeps her arms from getting all black and blue from the sticks. She has hard veins to find.

She's Back!!!

At the visitation tonight in the NICU Rebecca talked a lot to me. She was pretty alert. Had her eyes open most of the 30 minutes I was there. She laughed some and it was her personality. When I had to leave she said “That sucks!”. She didn’t know where she was. When we told her she wanted to know why. I was afraid to tell her she had a brain seizure. She took it pretty well. I could tell she was concerned. She did ask what medicines they are giving her. She didn’t seem to remember all the medicines she was taking before she came in.


I hope this recovery continues and she doesn’t have another seizure. I don‘t think anybody knows why she had them. We may never know. The abrupt quitting of the Lyrica could be the cause. However, I think she had a mild seizure before she quit taking the medicine that caused her to forget to take her medicine. I sometimes wonder if the chemo and myeloma that affects the peripheral nerves could affect the nerves in the brain. What is chemo brain?

In the future I need to manage her medicine a lot better.

Brain Seizure

I noticed that Rebecca had an altered state of mind Wednesday morning. I check her medicine and noticed she had not taken all her medicine the last two days. I have been complacent with ensuring she was taking her medicine. Up until now she has been real disciplined in taking her medicine. She fills out a daily log indicating what, how much, and when she takes her medicines. She has been taking two 150 mg of Lyrica twice a day. Every once in a while she only takes one a day. She took one on Monday and that was in the evening and that was the last one she took. There was no daily log for Tuesday so I assume she did not take any medicine on Tuesday. Her last dose of oxycotin was 160 mg Monday morning. She normally takes 160 mg three times a day and 30 mg of oxycodone three times a day. I did get her to take 80 mg of oxycotin and 30 mg of oxycodone on Wednesday morning. She would not communicate with me. She would answer yes when I ask her to take medicine or a drink of water but then not do it.


I took her to the ER at 3 PM on Wednesday. They basically didn’t find anything and we finally got to a room in the hospital at 3 AM on Thursday. At about 2 PM they connect an EEG system. Then the neurologist came by about 6:30 PM and said they were going to put her in NICU. He said she was having brain seizures based on the EEG they did earlier in the day and the one connected at the time. Before they got her moved to the NICU she had a brain seizure. To me it looked pretty severe. I think it lasted about 5 minutes. She then quickly got moved to the NICU. Visitation is limited to four 20 minute periods a day. My daughter and I saw her last night at 8:30. She was calm and did not appear to recognize us. She didn’t say anything and didn’t open her eyes.

At 8:30 this morning I thought she was a little more responsive. When I mentioned our daughter’s name she half opened her eyes for a half second. I said “I love you” and she said the same thing back. This was the first words I heard her say since Tuesday evening other than a nod and yes and no.

I am going to go see her at 8:30 this evening. This is a little scary. I hope we get her back.

They are only giving her some anti seizure medicine and some antibiotics. Her potassium was low and they gave her some of that. They are not aware of any withdrawal problems from the oxycotin/oxycodone or other pain so they are not giving anything for that. In her state I wonder how they can tell she is not having any withdrawal symptoms. I guess it would be good if she is not having any pain to get off the pain drugs. She has been on it for nearly two years.

Results of Bone Marrow Biopsy

We had a visit with our oncologist today. The bone marrow biopsy didn’t come up with much. The sample didn’t contain enough myeloma cells to do the FISH analysis. The other test they did for DNA abnormalities was normal. The good part is there weren’t many myeloma cells where the biopsy was taken. That bad part is she went through the pain of the biopsy and we didn’t find out anything meaningful. The Lambda free light chain proteins increased from 31 to 33 mg/L. This is a sensitive test so there isn’t really much difference between these two tests. However, our oncologist is looking at the last 5 months and feels there is an increasing trend. He is increasing the melphalan from 5 mg per M squared to 7 mg per M squared. He is also going to increase the steroids she takes with this. She takes this dose once every 5 or 6 weeks.

The 24 hour urine test showed no Bence Jones protein in the urine. This is what you would expect with the low Freelite test numbers. She had 1500 mL which is the largest 24 hour urine test amount I thing she has had.  That is a good indicator.  Her creatinine was 1.3 which is just on the high side of normal. I forgot to get a copy of all the lab results so will have to report on that at a later time.

He wanted her to have Zometa today but we had already been there 1 and ½ hours so we put it off for ten days.  We had plans to go to lunch with our two live-in health care givers.

Rebecca felt more negative about today than positive. The bone marrow biopsy didn’t find any myeloma but the doctor is increasing the chemo because of the increasing trend in the Freelite test numbers. So we will wait another 5 or 6 weeks to see if the next dose of chemo reduces the Lambda free light chain proteins.

The other good news is she gained about 8 pounds in the last 5 weeks. This is the first time she has gained weight since she started losing weight about Feb 2009. She lost about 50 pounds so this is a good turn around. She has been eating more. I started making apple strudel about 5 weeks ago and she has been eating a lot of that. It should be pretty good for her since it has apples, sliced almonds, and raisins. She does like a lot of butter with it.

The two live-in health care providers are working pretty well.  I went on a 9 day trip and they took good care of her.  I met one of them two years ago mountain biking.  My wife didn’t like two things about me mountain biking.  She would be left alone and I rode by myself many times which is more risky.  She worried that I wouldn’t make it back sometimes.  So now one of the health care providers rides with me while the other one stays with her.

Here is her free light protein chart. The Lambda number is the marker for her type of myeloma.

Bone Marrow Biopsy

Rebecca had the bone marrow biopsy last Friday. The drug propofol was used. It was suppose to put her asleep but she said it didn’t. During the procedure she experienced a lot of pain in her lower spine where she has the most fractured vertebrae. She is still having this pain and concerned that the doctor re-fractured some of her vertebrae. There is a new device for doing bone marrow biopsies that may have worked better.  There are 50 centers using this new device that wouldn’t need near as much pressure to get into the bone.  http://www.vidacare.com/oncontrol/index.html


Before this procedure she had made the comment that her back didn’t hurt much when she walked a little bit. Now this has set her back again. She is still taking about 480 mg of oxyicotin a day.

It will take a couple of weeks to get the results back from the biopsy. Not sure it will tell us much. The genetic abnormalities of the myeloma plasma cell can provide some indications on which treatment plans might work better and the prognosis. How you respond to treatment may give about the same indicators so I am not sure how much value there is in knowing the specific genetic defects. With the low Freelite number she has I wouldn’t be surprised if this biopsy doesn’t capture many myeloma cells.

The marker number went up but does it mean anything?

Rebecca had a Freelite test on 21 Sep 2010. The Lambda free light chain protein increased from 18.1 mg/L to 30.9 mg/L. The normal range is 5.7 to 26.3 mg/L. The other interesting thing is the Kappa free light chain protein increased from 10.2 to 18.2 mg/L during this same time. The normal range for this is 3.3 to 19.4 mg/L.


Rebecca has both good plasma immune cells and plasma myeloma cells which are the cancer. The good plasma immune cells secrete both Kappa and Lambda light chain proteins in the process of making immunoglobulins to fight infections. Her myeloma cells secrete only the Lambda type proteins. This increase in Lambda proteins may not be an indication that her myeloma cells have increased in numbers. Since her Kappa proteins went up by the same ratio as her Lambda proteins this indicates the increase in the Lambda proteins came from her good immune cells and not the myeloma cells. She had a cold when the blood for this last test was drawn. Her Lambda protein count was at 1960 mg/L when she was diagnosed so a count of 31 is pretty insignificant. However, it is the increase that gets your attention. I assume an infection could cause the Lambda and Kappa proteins from your good immune cells to go above the normal range.

Rebecca is going to have a bone marrow biopsy tomorrow. She has only had two of these and it has been over a year. The purpose is to get the genetic testing done on the myeloma cell to see what type of DNA abnormalities there are. This can indicate the aggressiveness of the myeloma and supposedly help choose the type of treatment. They didn’t do the genetic testing on the first two biopsies and they should have.

Rebecca is still having the back pain we assume from the fractured vertebrae. Her digestive tract is still not working good and causing some discomfort and pain. The peripheral neuropathy has not improved any in her feet and left hand. She has increase her Lyrica another 50 mg twice a day to 150 mg twice a day. So far the Lyrica has not seemed to help. May have to keep increasing the dose some more to see if that will help. I do massage her feet a couple of times a day with Neuragen. That seems to give her a little relief.

Here are some of her lab results from 9/21/10:

WBC = 5.2 (4.8 - 10.8)
RBC = ?? (4.2 - 5.4)
HGB = 11.1 (12.0 - 16.0)
PLT = 128 (130 - 400)

IgG 473 mg/dl (700 - 1600
IgA 70 mg/dl (70 - 400)
IgM 12 mg/dl (40 - 230)
IEP - No monoclonal band identified.

Kappa Free Light Chains 18.2 mg/l (3.3 - 19.4)
Lambda Free Light Chains 30.9 mg/l (5.7 - 26.3)
Kappa/Lambda FLC ratio 0.59 (0.26 - 1.65)

Not much from the visit to the pain clinic.

We saw our oncologist on August 12th. Went to a pain clinic the next day. Her pain medication was increased from 100 mg three times a day to 120 mg three times a day. Also got a prescription for Opana. The insurance company denied this so the Doctor has to file an appeal.

She took 8 mg of melphalan per day starting on the 17 of August for 4 days along with 40 mg of predisone each of the 4 days.  She has been doing this every 6 weeks now for about a year.
The peripheral neuropathy has not improved. This week she started taking 100 mg of Lyrica twice a day. The gut is still not working well.
We received some of the lab results from the blood draw of 8/12/2010.

WBC = 5.1 (4.8 - 10.8)
RBC = 3.45 (4.2 - 5.4)
HGB = 12.4 (12.0 - 16.0)
PLT = 139 (130 - 400)

IgG 485 mg/dl (700 - 1600
IgA 62 mg/dl (70 - 400)
IgM 14 mg/dl (40 - 230)
IEP - No monoclonal band identified.

Kappa Free Light Chains 10.2 mg/l (3.3 - 19.4)
Lambda Free Light Chains 18.1 mg/l (5.7 - 26.3)
Kappa/Lambda FLC ratio 1.77 (0.26 - 1.65)

Freelite Test Results

Rebecca’s lower back pain seems to be getting worse. The doctor increased the pain medication from 80 mg three times a day to 100 mg three times a day. The instant break through pain medication seems to have lost its effectiveness. Her tolerance for this pain medication may be on the increase. She has an appointment with a pain clinic to see what they can do. She has been there before and has had about three epidurals. She had mixed results with those.


We received some of the lab results from the blood draw of 7/9/2010.

IgG 430 mg/dl (700 - 1600
IgA 55 mg/dl (70 - 400)
IgM 13 mg/dl (40 - 230)
IEP - No monoclonal band identified.
Kappa Free Light Chains 9.251 mg/l (3.3 - 19.4)
Lambda Free Light Chains 17.7 mg/l (5.7 - 26.3)
Kappa/Lambda FLC ratio 1.91 (0.26 - 1.65)

No Stem Cell Transplant in the Near Future

We went to UAB on 7 July for a second opinion and the possibility of doing a stem cell harvest. The doctor had reservation about doing a stem cell transplant due to her general conditions. The compression fractures that are causing pain and poor mobility, the digestive tract that is not functioning properly and causing pain, and the peripheral neuropathy.

We had a doctors appointment with our regular oncologist on 9 July. It was decided to take 0.7 mg/M2 of Velcade that day and then discontinue taking it anymore due to the peripheral neuropathy. She also started a dose of melphalan which is 8 mg per day for four days. She will take this again in five weeks. She also had blood drawn for a Freelite test. The results of this test usually take about a week.

Here are some of her lab results from 7/9/10:

WBC = 8.1 (4.8 - 10.8)
RBC = 3.32 (4.2 - 5.4)
HGB = 11.5 (12.0 - 16.0)
PLT = 137 (130 - 400)

Staying the Course

Rebecca received her bi-weekly dose of 0.7 mg/M^2 yesterday along with 20 mg of Dex/day for two days. She also had an infusion of Zometia over a 30 minute period. The PN is still persistent as well as the back pain.


The doctor gave her a prescription for Onsolis, a new application method for fentanyl. It is a soluble film you put in your mouth on your cheek. It dissolves in about 15 minutes. She did her first one yesterday when we were at the cancer center. It is a 200 mcg dose. It didn’t do much for the pain. Made her a little groggy. Sixty of these costs $1224, our co-pay was $45. After she takes three of these she can double the dose if she wants by taking one more after the first one dissolves.

She will have another free light chain protein test in two weeks. This will provide an indication on how well the low dose bi-weekly Velcade chemo treatment is keeping her myeloma cancer cells in check. The normal cycle of Velcade is 1.3 mg/M^2 four times every three weeks. She is taking a little less than 20 percent of this amount. We are hoping this low dose will work because of the peripheral neuropathy. If the PN doesn’t start decreasing she may want to stop the Velcade and try something else.

We will be going to UAB on July 7th to get a second opinion and discuss a stem cell transplant.

Here are some of her lab results from 6/25/10:

WBC = 10.2 (4.8 - 10.8)
RBC = 3.34 (4.2 - 5.4)
HGB = 12.0 (12.0 - 16.0)
PLT = 159 (130 - 400)
Creatinine = 1.1 (0.4 - 1.1)
GFR = 51 (>60)

Lambda Light Chains Still Normal

We received the lab results of the Freelite test and SPEP. The lambda light chain protein only increased from 9.53 to 13.1 mg/L. This is insignificant and still within the normal range. We were concern that this number might increase with the recent reduction in chemo treatment.


11 June 2010

IgG 431 mg/dl (700 - 1600
IgA 57 mg/dl (70 - 400)
IgM 11 mg/dl (40 - 230)
IEP - No monoclonal band identified.
Kappa Free Light Chains 10.8 mg/l (3.3 - 19.4)
Lambda Free Light Chains 13.1 mg/l (5.7 - 26.3)
Kappa/Lambda FLC ratio 0.82 (0.26 - 1.65)

Another Chemo Day on 11 June.

Rebecca had chemo on June 11. The dose and frequency has been reduced due to PN which is still about the same. She had 0.7 mg/M2 of Velcade and 10 mg of Dex. He also added 20 mg of oral Dex for two days.


She has an appointment on July 7th at UAB to look into having a stem cell transplant. Their web site is not very up to date. It only mentions bone marrow transplants. However, they have been doing stem cell transplants since the mid 90’s.

Here are some of her blood labs from 11 June 2010:

WBC = 7.9
RBC = 3.15
HGB = 11.4
PLT = 159
Creatinine = 1.1
GFR = 51
Albumin = 3.1
B2M= 3.65 (0.8 - 2.2) MG/L

This is the first time she has ever had her Beta-2 Microglobulin check. A Freelite test was taken and the results should be in by this Friday.

Changing Chemo Plan

I need to be more attentive to this blog. If I would post every time I went on a mountain bike ride that would keep it up to date.

Rebecca has been having more difficulty with peripheral neuropathy. She had velcade on Apr 23 and then took a chemo holiday until May 28 when she had another dose of velcade, 0.7 mg/m-squared. The plan is to try to take this amount every two weeks. The melphalan and prednisone was discontinued since she wants to harvest her stem cells. It is reported that melphalan makes it more difficult to harvest stem cells.

The chemo holiday precipitated a discussion on what we could do if and when there is no chemo plan that works anymore. This normally happens with most every myeloma patient at some point. What is left is an autologous stem cell transplant and an allogeneic stem cell plant. If she can harvest we will put that in the freezer for now. She has two sisters that have offered to be a donor if they are compatible. That is a 1 in 4 chance for each of them.

Rebecca has been having more back pain lately. She had an MRI last week. There were no new fractures. Our doctor only had the narrative report. He said the old fractures are still there. When I asked him if the bones have fused or could the bone fractures still move relative to each other. He couldn’t say. I would like to see the data on a computer screen and compare the last two MRI’s. With the MRI data we should be able to see where the nerves are coming out of the fractured vertebrae. She fractured L2 thru L4 in Oct of 2008, T12, L1, and L5 fractured sometime in early 2009. If it was not for these fractures I think she could have a pretty normal life.

Based on her latest Freelite test the amount of myeloma cells is very low. She will have another Freelite test on 11 June. This should indicate the effects of this change in chemo plan.

Here are some of her blood labs from 28 May 2010:

WBC = 8.1

RBC = 3.32

HGB = 11.9
PLT = 177
Creatinine = 1.1
GFR = 51
Albumin = 3.7

7 May 2010
IgG 458 mg/dl (700 - 1600
IgA 51 mg/dl (70 - 400)
IgM 10 mg/dl (40 - 230)
IEP - No monoclonal band identified.
Kappa Free Light Chains 9.63 mg/l (3.3 - 19.4)
Lambda Free Light Chains 9.53 mg/l (5.7 - 26.3)

Kappa/Lambda FLC ratio 1.01 (0.26 - 1.65)

2 April 2010 Chemo Day

Rebecca had chemo today and 1 week ago. She has been having more back pain the last 3 weeks. She may have refractured some of the vertebrae that already had compression fractures.

Here are some of her blood labs from 26 March:
WBC = 4.1
RBC = 3.36
HGB = 12.2
PLT = 90
Creatinine = 1.2
GFR = 46
Albumin = 3.5
IgG 452 mg/dl (700 - 1600
IgA 51 mg/dl (70 - 400)
IgM 12 mg/dl (40 - 230)
IEP - No monoclonal band identified.
Kappa Free Light Chains 9.24 mg/l (3.3 - 19.4)
Lambda Free Light Chains 8.67 mg/l (5.7 - 26.3)
Kappa/Lambda FLC ratio 1.07 (0.26 - 1.65)

12 Mar 2010 Chemo

Rebecca had chemo yesterday. Was in and out a little faster than normal. The clinic was less busy than normal. The back pain was a little worse than normal. She had trouble finding a comfortable position.

Here are some of her blood labs:
WBC = 7.0
RBC = 3.45
HGB = 12.6
PLT = 153

Chemo Received Yesterday

Went to The Cancer Center clinic yesterday for chemo. Rebecca is on a 6 week cycle of Velcade with 10 mg Dex on days 1, 8, 11, 25, 32. Due to the PN she only gets .7 mg/M squared. She takes 8 mg/day of melpahlan with 40 mg of prednisone for the first four days. Yesterday was day 8. This is the fourth cycle.

Some of her labs:
WBC = 9.1
RBC = 3.29
HGB = 12.0
PLT = 176
Creatinine = 1.1
Albumin = 3.4

Lambda Light Chain Graph

This is my wife's Lambda light chain protein level in mg/L. The two increases were concurrent with taking a break from chemo treatment. These results are from FreeLite tests.