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)