Thursday, October 13, 2011

Back on a Chemo Treatment Plan

The cancer marker number continues to increase at an increasing rate.  Rebecca started taking Revlimid a couple of months ago.  The first cycle was 10 mg/day for 21 days on and 7 off.  The doze was increased to 15 mg/day the second cycle.  Our oncologist wanted to start out with a low doze to see what the side effects would be like.  She will start the next cycle tomorrow with 20 mg/day of the Revlimid along with 20 mg of Dex on days 1, 8, & 15.

The first two cycles of Revlimid doesn’t appear to be doing much from looking at the Lambda free light chain protein trends.  Hopefully adding Dex will help.  I have added the rate the Lambda number is changing per day to the one graph.  Divide this number by 100 to get the correct unit of measure of mg/L/day.  The rate of increase has decreased per the last test so maybe the Revlimid is doing something.
The pain from the peripheral neuropathy seems to be getting a worse.  She does get a little relief by applying some Neuragen.  She is still taking the oxycotin and oxycodene.  I wonder what her tolerance to this is since it doesn’t seem to give her much pain relief.

Our venture to the new pain clinic didn’t go well.  Rebecca has a difficult time waiting a long time sitting in a wheel chair.  After waiting about two hours for the doctor we left.  They called us later and we went back the next day.  Only waited 15 minutes to see the doctor.  That went pretty well.  The plan was to evaluate having a pump installed to inject the pain medicine directly into the spine.  However, they scheduled us to go to several classes.  When we went to the first class two weeks later we didn’t like this approach.  It felt like it was a behavior recovery meeting.  We left that class early on.

Rebecca has been doing a good job of managing the dysfunctional digestive system.  She feels the domperidone is helping to prevent an other ileus.  She has had a few times where she thought she was going to have an ileus.  She would tell me to get things ready for the trip to the ER room.  But she got it to pass.  We have not been back to the hospital for 4 months now.  That is pretty good since the last ileus was only 6 weeks after the previous one.  An ileus is very painful and discomforting.  She errors on the side of keeping the stools too loose in an effort to prevent an ileus.  She also has incontinence when she sleeps so this puts a big clean up effort on her and I.  She is embarrassed about it and doesn’t let me help as much as she should.

Rebecca’s mobility continues to be very limited.  She seems to be having more pain when she tries to walk.  That is why I wonder if she is becoming more tolerant to the pain medication or are the fractured vertebrae re-fracturing.

We have an appointment with the neurologist next week.  She is continuing to take the seizure medicine.  I think she continues to have small seizures.  She continues to have some small jerks in her sleep.  The doctors thinks these are just normal muscle spasms.  The other tell tale sign is in the past the seizures seem to affect her memory and her personality.   There seems to be a little bit of this going on.  Her driver’s license was due to expire and I said she needed to get it renewed for the purpose of a picture ID.  She didn’t think they would renew it but we went anyhow and they did renew it.  She didn’t think they would renew it because of the seizures.  I had forgot about that.  Evidently the doctor forgot to send in the restriction.

Tuesday, June 21, 2011

Visit to the Gastroenterologist

We went to the gastroenterologist yesterday. He gave her a prescription for domperidone. I drew a blank at the first three pharmacies. The FDA has not approved this drug. It is used in other countries. There is a cardiac arrest risk. I think it is pretty low and may be associated with the IV application.

He also wants her to have an x-ray with barium. That is scheduled tomorrow.

We have an appointment with another pain clinic on Monday. Hopefully they will have some options for the compression fractures.

Saturday, June 11, 2011

Still in the Hospital

They took an x-ray the next day and the blockage had resolved. They left the tube in until the second day to make sure she didn't need it any more. They first put her on a clear liquid diet. Then when she did okay with that they let her have some solids.

Her platelets tested 130 the first day and 104 this morning. The doctor said she could go home today. The potassium and magnesium tested low today. Now they want us to wait until another blood test to check on these again. So we have to wait until 6:30 to take the blood for the magnesium test. It will be late today before we get out of here.

Wednesday, June 8, 2011

In the ER with another Ileus Attack.

I drove Rebecca to the ER this time rather than calling 911. She had to sit in a wheel chair awhile before they could find a room with a bed. Her back was hurting bad and she wanted to lay down. I guess I should have called 911 and we would not have had that problem.

The X-ray confirmed she had the blockage in the intestines which is called an ileus. Her's could be due to the pain medication, spinal nerve damage, the damage from the radiation treatment she had a couple of years ago, or something else. This is very painful. It is like a twisted gut. She had a fundal placation about 20 years ago and she cannot vomit. She just has dry heaves which causes more pain.

They put a nasal tube down into her stomach and that has given her some relief. She is still nauseated but doing better than when we first arrived here.

This same thing happened about six weeks ago. They are going to admit her and do a Cat Scan with contrast to see if they can determine what is causing this.

Her blood counts have recovered to the low end of the normal range. Her platelets were 130. They were about 90 two weeks ago and about 40 four weeks ago. It is good to know her bone marrow is still working pretty good.

Sunday, June 5, 2011

The Chemo Fog is Lifting

We had another free light test on 26 May. The number increase from 109 to 127 mg/l in two weeks. Rebecca has been getting back to some normalcy since not having any chemo or Dex in a few weeks. She is back on the computer and making big “to do lists” for me. Her normalcy is not good since she still has a lot of back pain and little mobility. But to not be in the chemo fog and the bowel function returning in the direction of normal makes a big difference.

We have another doctors appointment this Thursday. Also another free light test. We normally do these every month but the doctor has increased the frequency of these. I guess because they are increasing. She is suppose to start on Rev next week if the blood counts are good this Thursday.

It would be interesting to see what her free light chain numbers would do if she stayed off chemo for a while longer. If they would hover at a number below a 1000 mg/l and she didn’t have any complications with the effects of the higher level of myeloma it might be better to stay off the chemo for a while. But then there is the theory that the more you let the cancer grow the harder it may be to knock it back down with treatment.

6/5/11 Monte Sano, Huntsville, AL by geweber49 at Garmin Connect - Details

6/5/11 Monte Sano, Huntsville, AL by geweber49 at Garmin Connect - Details

Had a good ride today.  It was a little warm and humid but I didn't push it to hard.  If I back off when my heart rate goes above 140 I tend to stay out of heat stress.

Monday, May 30, 2011

My Mountain Bike Ride today.

Had a good ride around the mountain today. It was a little warm late in the ride and I over heated alittle.

Wednesday, May 18, 2011

The Lambda Continues to Increase

The Lambda free light proteins went from 72 to 109 mg/l in a three week period ending 9 May. This was right after taking the Malphalan and Dex. So it appears it is not working very well. The next choice will be 10 mg/day of Revlimid. We plan to wait until her blood counts recover better.

The platelets are recovering slowly. They only went from 26 to 33 in ten days ending 9 May. Her hemoglobin was at 12.5 after the infusion of 2 units of red blood cells. It dropped to 10.5 ten days later. I assume the infused ones die at a faster rate than your own new ones.

The one good indicator this time was the Kappa free light proteins increased from1.8 to 10. This would indicate her immune system increased in the direction of normal. The normal range of Kappa is 2.6 to 16.5 mg/l.

The peripheral neuropathy seems to be getting a little worse. The back pain from the compression fractions seems to be worse after we go to doctor appointments due to the more activity. The gut is still causing a lot of discomfort and doesn’t appear to be working very well.

I am showing two plots of the increases in the Lambda. The one starts with the level when she was diagnosed. This is to keep in perspective that although it is increaseing at an increasing rate it is still much lower than when she was diagnosed.

Wednesday, April 27, 2011

Waiting for the Platelets to Recover

The platelets were at 18 yesterday when we went to The Cancer Center. They gave her an infusion of platelets. We will go back Thursday and have them checked again.

We received the results of the Freelite test from last Thursday. They increased from 62 mg/L to 72 mg/L. We were hoping they would go down since this was 3 weeks after the start of this last chemo cycle. I think it is a time for a change of the treatment plan since the Melphalan is hard on her blood counts and the free light number countinues to go up.

Her hemoglobin recovered nicely after the red blood cell infusion. It went from 8.4 to 12.5 G/dL (12.0 – 16.0).

We are crossing our fingers on the constipation issue.

Monday, April 25, 2011

Platelets Continue to Drop

Her platelets are at 20 today. She received the two bags of red blood cells yesterday. That perked her up quite a bit. They did remove the nasal tube yesterday which felt much better. Her stomach and bowels seem to be doing okay today so they are letting her go home today.

We will go to the doctors office tomorrow to get the blood checked for the falling platelets. Hopefully they will start to recover before she needs a transfusion of them. Platelets have a life span of 5 to 10 days. At the rate they are decreasing it appears her bone marrow is not producing many.

If she had not taken this cycle of chemo treatment we would not have had all these issues including the emergency room visit and hospital stay. I hope the Melphalan and Dex did some damage to the myeloma cells. This is the catch 22 of cancer treatment. Do you want to die from the treatment or the cancer? Would you rather have two years of life fighting the cancer resulting in low quality of life or one year of life without chemo and a better quality of life?

Sunday, April 24, 2011

Succumbing to another round of chemo.

Rebecca is in the hospital receiving a couple of bags of red blood cells. That is not why she is in the hospital though. On Thursday we went to a regular doctors appointment. Her hematocrit was down to 23 and her platelets were down to 29. The plan was to get a shot the next day of something to stimulate the release of more red blood cells.

On the way home we picked up some food from a deli. About an hour after she ate she started to get nauseated and diarrhea. We ended up in the emergency room. Initially thought it might be food poisoning but no one else got sick who ate the same food. After an X-ray showed the small intestines to be dilated they labeled it ileus. A non physical blockage if the small intestine. I would assume her peristalsis is slowed way down due to the high amount of pain medicine and/or the neuropathy. Her stomach was very distended and firm. They put a nasal tube into her stomach. Not much liquid came out but some gas may have been released since her stomach went down.

They shut the suction off yesterday. They should be able to remove the nasal tube today. Then she can try to take more by mouth.

The platelets dropped to 23 today. Surprisingly the absolute neutrophils are at 1.96. After the last cycle of melphalan they had dropped to 0.8.

Managing bowel movement is very critical. During the last cycle she had diarrhea about three weeks into the cycle. So this time we cut back on the anti constipation medicine some. I guess it was to much. We have decided it is better to have diarrhea than constipation.

Rebecca will not be happy with me talking about her bowels.

Thursday, April 14, 2011

Taking another dose of Melphalan

Rebecca started taking the 10 mg/day of melphalan two weeks ago. She is also taking 20 mg/day of Dex once a week for four weeks. She is not doing well. She is having nausea and considerable pain in the stomach. She has two doses of Dex left starting tomorrow. I would recommend she not take it.

We go to the doctor in a week. We will see how much her blood counts have been impacted by the chemo. She will also have a Freelite test. It takes about a week to get the results back from that test.

I still think she should take a couple of months off from chemo and see what the myeloma does. Some people live with the effects of the myeloma better than the effects of the chemo.

Here are some of her lab results from 4/08/2011:

WBC = 3.5 (4.8 - 10.8)
RBC = 3.0 (4.2 - 5.4)
HGB = 10.5 (12.0 - 16.0)
PLT = 91 (130 - 400)

Wednesday, March 30, 2011

Another Freelite Test Result

We got the results from the Freelite test today. The lambda number went from 49 to 62 mg/L. The kappa also increased from 1.7 to 6.2 mg/L from 2/24 to 3/24. The kappa is from the production of her good immunoglobulins. Since her white blood count and neutrophils went up you would expect the kappa and lambda related to the good immunoglobulin’s to go up. That indicates some of the lambda increase is not all due to the myeloma cells.

The chemo Melphalan is shipped to us in a cooler. It arrived yesterday. Her last cycle was on 1/14 and it knocked her good blood counts down a fair amount. Since the lambda number didn’t go up very much she might decide to wait a month and see what the lambda count is then.

Sunday, March 20, 2011


The immune system blood counts on the last blood lab were low. This was more than likely due to the last chemo on 1/14. This was 10 mg/day of melphalan for 4 days and 20 mg of Dex once a week for 4 weeks.

Here are some of her lab results from 2/24/2011:

WBC = 1.8 (4.8 - 10.8)
RBC = 2.75 (4.2 - 5.4)
HGB = 9.2 (12.0 - 16.0)
PLT = 111 (130 - 400)
NE# = 0.8 (1.56 – 6.13)
Creatinine = 1.1 (0.4 – 1.1)
BUN = 16 (6-20)
Calcium = 8.5 (8.6 – 10.2)
GFR = 51 (>60)
Albumin = 3.7 (3.2 – 4.8)

IgG 397 mg/dl (700 - 1600
IgA 31 mg/dl (70 - 400)
IgM 5 mg/dl (40 - 230)

IEP - No monoclonal band identified.

Lambda Free Light Chains 49.001 mg/l (5.71 – 26.3)
Kappa Free Light Chains 1.74 mg/l (3.3 - 19.4)
Kappa/Lambda Ratio 0.0356 (0.26 – 1.65)

Her immune system is down based on all the numbers of wbc, neutrophils, IgG, IgA, and IgM. We go to the doctor this Thursday. Hopefully the immune system counts will be back up.

She is still taking the two drugs for the brain seizures. I notice that when she is sleeping that she has a fair amount of limb motion. The neurologist doesn’t think they are seizures. He said even if they were that he would treat her with the same drugs and dose he has her on now.

The lambda count has an increasing trend if you look at the last 8 months. This number has started out low and has not yet doubled the high range. I consider this a low count overall and would typically indicate a low count of myeloma cells. The increase is what is worrisome. Without chemo it could rise to a level of say 200 and then stabilize. That would be good. Even if it went to 600 and then stabilized would be good.

Rebecca has been dealing with a nasty itch for the last few weeks. She has tried some fungal medicine and creams. It will get better at times but still battling it. The pain from the fractured vertebrae has increased. Still taking oxycotin and oxycodone.

Wednesday, February 2, 2011

Living the New Normal

Rebecca has been having some struggles since coming home from the hospital on 17 Dec. She is still having a few memory problems. We have not noticed any more brain seizures. We did have an appointment with the neurologist mid January. They took an EEG for a baseline. It must not have shown anything because the technician let us leave after she took 20 minutes of recording. We have not heard anything from them. We have an appointment on the 21st of February with them.

The neurologist did wean her off one of the three seizure drugs. Now she is taking 1500 mg, twice a day, of Keppra and 150 mg, three time a day, of Dilantin. She does not appear to be having any side effects from these drugs.

She started her cycle of Melphalan on 14 January. Ten mg/day for four days. Twenty mg Dex one day a week for 4 weeks. It seems about a week after she takes the Melphalan she has stomach problems and bowel movement problems. She will have a small bowel movement in her sleep and the consistency is soft and sticky. It is difficult to clean up. This can happen 5 to 10 times a day. This all of a sudden stopped two days ago after she had a normal bowel movement. We are wondering if the Melphalan is causing the mucus lining of the stomach to give way and is causing the bowel movements to have this consistency.

The back pain has been persistent and getting worse. She has increased her amount of oxycotin to try to get some relief.

Here are some of her lab results from 1/27/2011:

WBC = 3.2 (4.8 - 10.8)
RBC = 2.95 (4.2 - 5.4)
HGB = 10.1 (12.0 - 16.0)
PLT = 111 (130 - 400)

Creatinine = 1.4 (0.4 – 1.1)
BUN = 16 (6-20)
Calcium = 8.1 (8.6 – 10.2)
GFR = 38 (>60)
Albumin = 3.4 (3.2 – 4.8)

IgG 650 mg/dl (700 - 1600
IgA 90 mg/dl (70 - 400)
IgM 27 mg/dl (40 - 230)
IEP - No monoclonal band identified.

Lambda Free Light Chains 42.7 mg/l (5.71 – 26.3)
Kappa Free Light Chains 8.6 mg/l (3.3 - 19.4)
Kappa/Lambda Ratio 0.20 (0.26 – 1.65)