Rev-lite trial: end of cycle 4.

Tuesday 17th August 2010 I completed my Rev-lite clinical trial cycle 4 (28 days) for myeloma. Trial protocol states that after 4 cycles the status of my disease will be reassessed. If my disease has become worse the trial will stop. If my disease has shown improvement I remain on the trial.
My disease has improved allowing me to remain on the trial.
From cycle 5 onwards the Lenalidomide dosage remains at 15mg for 21 days then 7 days free. Dexamethasone dosage remains at 20mg but only given for the first 4 days. For cycles 1 to 4 dexamethasone was 4 days on 4 days off for 21 days; the reduction is welcomed. A daily Aspirin continues as before.
I can now remain on this trial indefinitely or until it officially ends. Reasons for me stopping the trial is complications from side effects or if there is a return of myeloma.
A skeletal x-ray has been scheduled for 2 months time.
This is very heartening news for me. After 9 years since myeloma diagnose I am virtually myeloma free again heading back to normal all thanks to Lenalidomide. For how long, can’t say, that’s the nature of myeloma and in the hands of God. I feel humble that I received the opportunity to participate in the trial. There are others who Lenalidomide has not worked, my heart goes out to them.
I am convinced that the lower dosage of Lenalidomide and dexamethasone is still effective and does reduce the side effects.

Cycle 4 summary:
There were no significant problems during cycle 4 other than a minor head cold and later coughing phlegm for 3 days (it is winter in NZ). During week 3 of the previous 3 cycles there was a deteriation of the mouth and bottom lip. This was not present in the mouth this time, only a minor feeling on the lip.
Bowels were generally normal, Laxol and Kiwi fruit used sometimes for constipation during dexo days.
There was only one afternoon of fatigue this cycle, though there were occasional pockets of tiredness in the late afternoon. My strength is returning after the diabetes problem allowing me to walk 30 to 40 minutes a day.
I did get some minor cramp in my feet on days 15 and 16. First time for a while even though I am taking vitamin E for cramp.
Starting in the 4th week the skin at my protaphane (insulin) needle sites became bruised or blood spots appeared. This was thought to be related to my lower platelets and the Aspirin which thins the blood. We are currently monitoring this.
There are problems with dexamethasone side effects. Refer to the dexamethasone heading below.
Overall there was an improvement on the first 3 cycles.

Test results:
Today’s results are not yet available. The test results from 4 weeks ago indicate that I continue to respond well to the new treatment.
My IgG at beginning of the trial (28th April) was 32.5 g/L (USA 3250 mg/dl) last month (20th July) 10.7 (USA 1070). Normal range is 7 to 16.
Platelets: 306 now 172.
HB: 115 now 126
RBC: 4.13 now 4.3
WBC 6.7 now 4.8

Diabetes:
Dexamethasone increases the blood sugars. During cycle 4 on dexo days I controlled my blood/sugar levels by eating less carbohydrates and walking for regular exercise. The other option of increasing my insulin did not eventuate.
To help with food shopping, cooking and eating I have created a spreadsheet which lists food item, protein, carbohydrates and sugar, a good guide.

Weight loss:
During cycle 4 my weight remained constant at 65 kg (143 lbs). With my diabetes food recommendations now in place I don’t expect to regain much weight at all.

Dexamethasone:
The accumulative effect of dexamethasone over 4 cycles and earlier in the year combined with cyclophosphomide has accentuated some side effects.
Sleep problems during dexamethasone days have become an issue, the wide awake until early morning is there. I am reluctant to take my sedative (Zopiclone) as I get withdrawl symptoms when I stop. That is sleep for 30 minutes then wake with waves of restlessness in my arms and torso for about 3 hours. I have previously used morphine based pain relief some times in high dosages: Kaponal, m-elson, and recently Oxycontin. Perhaps the Zopiclone triggers some residual Morphine still in my body creating a craving. That’s my theory.
I can be aggressive and loud in my speech, very opinionated, don’t hold back. This was a big problem during the first 2 weeks after retuning from hospital with diabetes. I was in denial and angry, not the normal me. Now that I have accepted the diabetes the anger has reduced and we have put in place some systems to down size my speech problems. There are other ways I can do stress release.
I am more emotional this cycle, the tears can flow freely out of nowhere, this maybe a combination of the dexamethasone and the diabetes trauma.
Link: Dexamethasone for myeloma.

Peripheral neuropathy:
During cycle 4 there has again been a very small increase in my peripheral neuropathy in my feet, mainly an increase in the numbness of the soles. It is present in my left hand, but not the right hand. Peripheral neuropathy does reduce during the 4th week when there is no Lenalidomide. Keeping my feet warm, using vitamins and Alpha-lipoic-acid helps reduce the peripheral neuropathy symptoms.

General:
The diabetes was a big blow to me, I have now accepted it. Extra work now includes a change in eating habits, learning the nutritional values of food, avoiding sugar, keeping a daily food diary, the three times a day finger pricks for blood/sugar monitoring, two times a day insulin injections and gaining diabetes knowledge. There will be a posting soon on the diabetes impact on my myeloma and what I am doing to keep it simple.

Links: (Links open in a new window).
Rev-lite clinical trial. Commenced 28 April 2010.
Rev-lite clinical trial: end of cycle 1.
Rev-lite clinical trial: cycle 2, day 18.
Rev-lite clinical trial: end of cycle 2.
Rev-lite clinical trial: end of cycle 3.

Rev-lite trial: end of cycle 3.

Tuesday 20th July 2010 I completed my Rev-lite clinical trial cycle (28 days) for myeloma.
Test results:
The test results available indicate that I continue to respond well to the new treatment. Results from other tests that take longer to complete are not yet available. My myeloma results IgG, globulin, total protein etc continue to head downwards. The drop in my bloods (platelets, neutrophils, haemoglobin, red counts etc) at the end of 3 weeks of Lenalidomide puts them at the bottom of the “normal” range as expected. It is noted that Anaemia is present.
Diabetes:
During cycle 3 I had suffered Candida which in combination with long term dexamethasone use resulted in my blood/sugar levels sky rocketing giving me diabetes type 2.
Link: Who let the dexo dogs out?
Dexamethasone increases the blood sugars. The final dexo days (17 to 20) coincided with my hospitalisation so the dexo was stopped for those four days. During cycle 4 on dexo days I control my blood/sugar levels by eating less carbohydrates and regular exercise which for me is walking. If this does not work I then will be increasing my twice daily insulin dosage.
Weight loss:
During this month I lost 7kg (15lbs) due to the Candida and diabetes, so far 1kg has gone back on. With my diabetes food recommendations now in place I don’t expect to regain much weight at all.
Pain relief:
My pain relief of Oxycontin slow release capsules has been stopped. Any pain relief will be controlled by paracetamol. There were no side effects during Oxycontin reduction but some side effect experiences after stopping completely. Mainly difficulty in getting to sleep, waves of restlessness in the arms. This reduced over 4 days and is no longer present.
Peripheral neuropathy:
During cycle 3 there has been a very small increase in my peripheral neuropathy in my feet, mainly a numbness of the soles. This does reduce during the 4th week of no Lenalidomide. Keeping my feet warm, using vitamins and Alpha-lipoic -acid helps reduce the peripheral neuropathy symptoms.
General:
The diabetes was a big blow to me, I have now accepted it. Extra work now includes a change in eating habits, learning the nutritional values of food, no sugar, keeping a daily food diary, the three times a day finger pricks for blood/sugar monitoring, two times a day insulin injections and gaining diabetes knowledge. There will be a posting soon on the diabetes impact on my myeloma and what I am doing to keep it simple.
Cycle 4 has commenced including the scheduled dexo.

Links: (Links open in a new window).
Rev-lite clinical trial. Commenced 28 April 2010.
Rev-lite clinical trial: end of cycle 1.
Rev-lite clinical trial: cycle 2, day 18.
Rev-lite clinical trial: end of cycle 2.

Who let the dexo dogs out?

Who let the dexo dogs out; they mauled me and left me with diabetes.
My long term use of dexamethasone was a big contributor to my diabetes; it is a dexamethasone side effect.
We had been monitoring my glucose levels; there was a gradual increase but not too alarming. I do have a family history of diabetes.
Over the last 3 weeks I was experiencing increasing fatigue and tiredness. As I am on a clinical trial I kept the hospital informed. My mouth developed what looked like thrush, white patches on the tongue and mouth so off the GP who diagnosed oral Candida. This was treated with lozogenes. I was to return in 2 days.
Candida appears on the lining of your mouth and tongue. A compromised immune system increases the risk. An underlying condition such as diabetes may be a cause.
My condition quickly progressed to increased fatigue, dizziness, light headedness, brain fog, excessive thirst and increased urinary frequency (dibetes symptoms). Next morning I could barely function, off to the hospital where tests showed I was badly dehydrated and had a very high glucose reading. Diagnose was diabetes type 2 resulting in 5 days in hospital to control it. During the 3 weeks I lost 9 kg (20 lbs), need to put back on half of that.
When I was discharged I came home with a bad attitude, I wanted to leave my diabetes at the hospital. I did not want the 3 times daily blood glucose monitoring, the twice daily insulin injections, the constant thinking about what I can or can’t eat and all the new knowledge I need to live with diabetes. It was an unwanted intrusion into my life with myeloma.
I am living with myeloma, learnt a lot about it and was coping well. The Rev-lite trial has lowered my IgG levels, bone pain has gone, Lenalidomide and dexamethasone is working. One more cycle would get me to the next stage, less dexamethasone.
There is no escape, my attitude had to change and slowly it has. I have put all my diabetes information, monitoring meter, insulin pen, and needles into a cardboard box, a one stop shop. That’s the same in my head space; the diabetes is in a box not interfering with my myeloma.

Links (open in new page):
Oral Candina
Clinical trial

Dex and Dope

Highly intelligent people often display a huge gift: the ability to rapidly and distantly free associate, connecting ideas to areas that are so far away that most people can’t see the connections unless they are patiently taught. There are other aspects to intelligence, of course, but the ability to free associate over vast mental distances is one of the most obvious to the sensitive onlooker.

Plasmaphoresis

In March of 2007 I was at my monthly oncologist appt for routine labs. I had previously had creatinine levels in the 0.8-1.0 range. Looking back in my records my creatinine on January 2, 2007 was 0.9. January 30th it was 1.0. February 27th it was 1.5. March 30th it jumped to 4.0. At this last level my doctor advised me he was going to admit me to the hospital.

At this time I had been on Biaxin, Revlimid and Dexamethasone for three months with not a very dramatic response. I had also received Zometa recently and had been on Ibuprofen. While in the hospital I was diagnosed with Acute Renal Failure (ARF). I was put on i.v. fluids and my chemotherapy was changed to Velcade. I also had a kidney biopsy performed which revealed I had “myeloma kidney”. My doctors call was to have me receive plasmapheresis treatments.

I first had to have a catheter inserted near my collar bone. The catheter had two lumens. One took the protein out and the other replaced it with albumin (I think Beth, I’m not 100% sure). I had five treatments, two as a hospital patient and the other three as an out-patient. It was an amazing experience. I was connected to this fairly large machine that had buttons, dials and lights along with the tubes that were connected to my catheter. The process took between 60-90 minutes. They can adjust the speed of the machine and it was necessary to do this a little at a time.

The process was painless. I do remember I was chilly during the transfer. They warmed the albumin before it was introduced to my system. They did tell me I might experience tingly sensations around my mouth but I never did.

During the process you could read, watch tv, listen to tapes or sleep. The nurse was there with me during the total procedure.

Each day I had treatment they took my labs and my creatinine continued to improve.
In September I did a SCT and my creatinine is now at 1.9.