The World of MM

I’m in the middle of my marketing class right now. Clearly, I am paying attention.

Here are some links to news and updates in the Myeloma world. I’ll explain them in further detail when I get home!

Carflizomib gets fast-track designation from FDA for treatment of refractory/relapsed Multiple Myeloma patients. Yay! Click HERE

Revlimid Maintenance and Secondary Cancers – More details emerge. BOOO! Click HERE

Why should you take Dex(amethasone) with food? Click HERE

Oh Happy Day!

Well, it’s probably time for an update on Mama Bear and LIFE! How sweet it is :) Before I begin, i’ll apologize in advance if my grammar and/or sanity get lost in translation. The repairmen came to fix a bunch of things in the apartment, so you know what THAT means! Yep, i’ve been inhaling the wonderful fragrances of GLUE, DRYWALL, and PAINT for the last 5-6 hours. joy. 
Anyway…
Mama Bear had her check up with the good doctor on Tuesday to see if we would need to go through with another transplant. Fuck. The days leading up to the appointment were filled with absolute DREAD as I had been almost 100% sure that she would have to go in (which would have been the following Thursday aka TWO.DAYS.LATER). Over the break, I had the chance to go back to the Tom Baker Cancer Centre for one of her chemo sessions and was able to look over her blood work. Her CBCs were pretty stable, but her Total Protein, which is a mix of both good protein and BAD protein (aka Myeloma protein), had gone up a little. Based on our history, rises in the total protein have never been because of the good protein going up. Aside from that, her Beta-2-Microglobulin levels had also gone up a little as well… Recent discussions on the ListServ on this matter have informed me that it is a new prognostic measure for myeloma patients. In other words, you do not want this number going up. Of course, I didn’t tell her any of this because I didn’t want her to worry. But all these things combined led me to believe that a transplant would definitely happen. Needless to say, it wouldn’t have been a very good start to the new year. But, to my surprise, my mom answered the phone with sunshine in her voice, saying that her m-spike (myeloma protein) had actually gone DOWN from 13 to 11. Granted, it’s not a lot, but any decrease is a step in the right direction, yes? That was a SHOCK. Our doctor had also said that her FreeLite Chain things (i’m still unsure about what these are exactly, so i’ll have to research it a bit more) went down a lot. Apparently, it is a better indicator of where you’re at than the m-spike? This, i’m not too convinced. I’m a little skeptical. Why had we never looked at these numbers in all the appointments before???? So, it’s still something that requires a little more investigation on my part. But I do trust our doctor. He’s a very good man, I just don’t understand what’s really happening and need to gain a little more information/control on my part. Anyway, he recommended, instead of a transplant, adding on another drug, Revlimid, to her current regimen. That brings the total to a chemo cocktail of 4 different drugs: Dexamethasone (Dex), Revlimid, Bortezomib (Velcade), and Cyclophosphamide (Cytoxan). Technically, Dex is a steroid, but whatever. A drug is a drug. I’m not the most elated with adding another drug to her regimen, as the body can only handle so much. And with the recent findings that Revlimid can cause secondary cancers, well… yeah. But I suppose it’s better than the alternative, yes? I’m pretty sure another transplant is due down the road, but right now is probably one of the worst times to do one. Flus, slippery ice, cold weather, etc. do NOT make for an easy recovery. Regardless though, I’m extremely grateful that that day was filled with good news, more so that my mom didn’t have to receive any bad news. I could tell BOTH my parents were relieved. It’s funny though. The night before, I prayed, like any other night. But instead I decided to ask just that the appointment would go well. Just one thing, not a whole list of things like my overall family’s health, happiness, etc. One precise, specific thing. And it’s like God, or someone, heard my prayers. So since then i’ve just been sending up prayers of gratitude and thanks. Aside from the obvious, I have nothing to ask for right now and plenty to be thankful for. I can tell we’re all growing a little weary of this, but anytime you receive good news, it   fuels the fires that push you forward. A dear friend of ours, whom we met during this whole ordeal, recently came thisclose to dying. From what I was told, his numbers came back so high they asked the technicians if there was a mistake, perhaps in a decimal placement or something. But nope, they were the real numbers. This was all in the post-transplant recovery in the hospital, so you can imagine just how discouraging that would have been. This is hard for me to write because it could happen to anyone affected with cancer, but it was suggested that they call family members to say their good-byes. That…is just heartbreaking. But. One morning, the numbers came back and…THEYWEREZERO!!! Miracles happen, my friends. Keep the faith and never give up. 


So that pretty much brings you up to speed on where the family is at. In other news, I’m just about to start the Phase II of my fundraiser and awareness campaign “Monsters Against Myeloma”. If you’ve been following the blog, you’ll probably know what it is :) Someone had heard about our cause and very graciously donated their own tickets to Lady Gaga’s concert in Salt Lake City in March. So i’m supersupersuper excited (and supersupersuper busy) to get this thing up and running ASAP, hopefully by the start/middle of next week! I plan on contacting the media within a couple days to get the word out. So if any of you, my beloved readers, know anyone in the Salt Lake City area wanting to go to a Lady Gaga concert (c’monnn, who WOULDN’T?!), please let them know about our event! I realize fundraising can seem a bit daunting sometimes, but our last winner from the summer won two tickets with $250 dollars raised (most of our donations have come from those just wanting to support the cause). It’s a lot of money, but also very do-able! So we’ve got that in the works. I also am in the midst of applying for any sort of volunteer position at the Edmonton Cross Cancer Institute, just to show my gratitude. Over the course of my mom’s treatment, the volunteers and nurses really were the unsung heroes. I cannot even begin to tell you how much these men and women do, how much love and care pours out of them. While doctors are amazing, these people are truly the faces of care and treatment and are severely underrated in our society. So I really want to try and give back to the community to show my gratitude and help others who are going through what I went through just over a year ago. If any of you, my readers, have not been directly affected by cancer, I would highly recommend volunteering at a local cancer center. Yes, it will be very uncomfortable at first. I remember the first day we went in for treatment. Dear lord, that was horrible and very unsettling. But you get used to it, as with all things, and have the opportunity (because it really is an opportunity) to meet the most amazing and courageous people, and have your lives changed. Forever. 
Either than that, school is keeping me on the hustle as usual, studying lecture notes (yeah, right), looking for internships, and getting involved. BUSYBUSYBUSY! 


Hope all is well with you, my readers.
Sending good vibes into the universe and you.

L

Rev-lite trial: end of cycle 5.

I was at daystay on Tuesday for my monthly Rev-lite trial consultation and Aredia.
All is well, all is stable, and test results remain in the normal zone, an uneventful medical month.
Cholesterol has returned to normal as well thanks to the diabetic diet.
The glucose reading is excellent considering what it was at diabetes diagnose. Thanks to the diet my fasting HbA1c % = 6.6
Perhaps I can now loosen up a bit and have some occasional treats.
I did have a pie on Fathers day, the local Green Bay Bakery award winning chicken and vegetable pie. I sniffed it, slowly ate it and made it last.
That ends cycle 5, now onto cycle 6.
I am now on my steroid dexamethasone 4 days a cycle which has made a big difference to quality of life. That’s 23 days without it. Sleep has returned to normal except for those 4 days, the real Sid has returned. That doesn’t stop me from talking to drivers who take the space between me and the next car or telling the footy referees of their mistakes.
Myeloma for me now is a series of treatment, remission, relapse etc though I hope the latest treatment is an extended remission. We use the theory when in remission do it now rather than later.
Therefore we are having a holiday in November, a 10 day coach tour of the bottom half of the South Island. We have previously seen the top half now we take in the remainder. Being a coach tour I can sit back to be taken every where and look out the window at the scenic wonders. We intend to take a scenic flight over the Southern Alps, Mt Cook and the glaciers as a big memory.
I am returning to work at Beca part time on the 20th, 3 days a week, 4 hours a day. There I am looking forward to the people contact and more brain involvement. More time depends on how I cope and work load availability, no worries about that.

Further To The Post Of Yesterday.

Just the best news received today at Hamada’s consultation at Lincoln. I felt he was doing well (see below) but to my surprise, the Para Protein results were through and a wonderful drop of 5 !! was recorded and is now at 16. All bloods have improved some. So with bated breath dare I say it looks like Revlimid is working it’s magic! This was such a surprise to us, as we did not think we would get these results so soon. Hamada has had just one course of Revlimid so far.

I can hear him in the other room snoring as he has a little nap and if I peep I am sure there is a smile on his face, as there was on the consultant’s today. How wonderful is this, such a long time since I have been able to write something positive and far too long since we have had any good news to report. What a warrior!!

Back on the treatment

Hi, apologies for being so remiss with my blogs. There wasn’t really much to report.

Unfortunately back in Feb my light chains (an indicator of my particular myeloma) started to twitch and since then the myeloma has returned – earlier than expected. I did not make this very public until recently as there didn’t seem to be much point until I started treatment. I had to have my gallbladder out (eventually done in early July – painful afterwards but went OK), before the treatment started.

I have started (this week) a relatively new drug called Revlimid which has over 50% success rate at stabilising or improving myeloma. It does have some potentially dangerous side effects, in particular lowering my blood counts and Deep Vein Thromosis. They may put me on Warfarin to counter this. At the moment I take a small dose of aspirin. I am very tired and quite shaky and no longer need a sleeping tablet – I also have a sleep in the afternoon! Once a week I take a big dose of steroids, which as before, makes me buzzy, hungry and stops me sleeping for a night or two. I also get very pink cheeks and fingers! I do a three week cycle of pills and then get a week off. If it works I could stay on the cycle indefinitely. If it doesn’t then other drug options are available and long term possibly a second transplant – maybe using donor cells this time.

The good news is that I had a skeletal survey which showed no bone damage yet and my kidneys are OK (often vulnerable in myeloma).

As the treatment is going to take a while to adapt to, we haven’t gone away for a holiday. Bob is having a great time doing DIY (currently erecting a greenhouse) – he is not very bothered about trips away. It transpired that the kids wanted to do their own thing over the hols so we gave them the money we would have spent. Tom and Jemma went to Paris for a few days and Rosie and Paul did a rock festival in Belgium and then interrail (went to Transylvania!). We have helped Rosie and Paul move into a rented house in Aston. Tom and Jemma are still happy in their own little place and Bob and Paul helped them to erect a shed.

I have been very busy with union work and writing letters to the paper re the disgraceful spending cuts. I have also started throwing all my old school stuff away – quite a wrench, but has to be done!

I will try to write more frequently re the treatment and if anyone with myeloma wants to correspond re treatment please do. I still love having visitors, but old rules now have to apply – please only come if you are healthy!

Hope you all have a good holiday.

Sarah

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.

Rev-lite trial: end of cycle 2.

Tuesday 22nd June 2010 I completed my Rev-lite clinical trial cycle 2 (28 days) for myeloma.
Test results:
The test results available indicate that I am responding 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.
Side effects:
I have had no big reaction or side effects. This cycle 2 has been better than cycle 1 with minimal fatigue, not so sleepy, no rash, less dry skin. In cycle 1 my mouth started to feel “furry” and the bottom lip became tender about day 17. A similar thing occurred in cycle 2 but not as bad.
Dexamethasone has given me an increased appetite on some of the days I have it resulting in a 1kg (2.2 lbs) weight increase. There has been some sleep disturbance, nothing extreme enough for a sedative.
Myeloma:
My myeloma bone pain has nearly disappeared indicating to me that the treatment is working. I can now sleep on my sides, roll over in bed and see where I am going when I reverse the car. During the next cycle I will be eliminating the pain relief. That will help identify any myeloma that is remaining.
Right femur, Lytic lesion and fracture:
The fracture in the lytic lesion of my right femur is healing.
I am now walking with no crutch, walking 30 minutes regularly for exercise and walking stairs.
All my support equipment has been returned except for the crutch. I only use that if people are around me, there are stairs to climb or if the ground is unstable.
Next Tuesday I have an appointment with orthopedics to x-ray and sign off the leg.
Pain relief:
My pain relief of Oxycontin slow release capsules has been reduced during cycle 2 to 20mg morning, 10 mg evening. During cycle 3 I hope to stop the Oxycontin. Any pain relief will then be paracetamol.
Peripheral neuropathy:
I have some peripheral neuropathy from previous chemotherapy and thalidomide treatment. To reduce the symptoms I take alpha-lipoic-acid capsules and vitamin B.
During cycle 2 there has been a small increase in my peripheral neuropathy in my feet, mainly a numbness of the feet especially the soles. In week 3 I began to experience foot cramps in the morning starting about an hour before waking. An evening drink of tonic water containing quinine was recommended. The taste was Yuk so I added orange juice. Good advice as the drink eliminated the cramp.
As a test I missed the drink one evening and yes, the cramp was there the next morning.
I have now added some magnesium vitamins as well.
Constipation:
I have some constipation originating from Lenalidomide, dexamethasone and Oxycontin. To control constipation I use Laxsol laxative at morning and evening meals varying the dose as required taking more during dexamethasone days or if there is no motion for 2 days. During the fourth week of cycle 2 I used no Laxol.
General:
We have moved from the single beds downstairs to the main bedroom upstairs.
I am now driving the car.
Myra has observed that the hair loss at the two previous radiation spots for soft tissue plasmacytoma on my skull (Jan 2010) is starting to regrow. This is a pleasant surprise.
I am aiming for a return to work, initially 4 hours a day, after the right leg has been x-rayed and orthopedics say go.
Rev-lite clinical trial cycle 3 commences Wednesday 23rd June 2010.
The goal now is to continue the treatment through to end of cycle 4 when we redo all the initial tests, bone marrow biopsy, x-rays etc again to compare the beginning of treatment with the end of 4 treatment cycles.
If there is no change I get dropped off the trial. If there is improvement I can stay on indefinitely. So far there has been improvement.

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

Rev-lite trial: cycle 2, day 18.

My cycle 2 of Rev-lite trial is at day 18 with some good achievements in the last 2 weeks.
There have been no problems with the trial treatment of lenalidomide and dexamethasone, less fatigue, sleeping well with the occasional extra nap when tired.
First achievement is with my fractured right femur where I have moved from using the big walker for support to using one crutch to using no crutch. I can now bear weight on the leg and only use the crutch in public to protect myself. A 30 minute walk each day is now a regular event.
Being able to walk means I can now drive the car which gives me more independence.
My main problem in showering has been fear of falling. This was overcome once I was able to bear more weight on the leg giving me confidence to shower and dry myself.
My pain relief has been reduced again, most myeloma bone pain has gone allowing me to spend time sleeping on my sides rather than only my back. To roll over from side to side in bed is bliss.
The big achievement is being able walk the stairs at home. Yesterday we moved from the single beds downstairs back to the master bedroom upstairs and into our Queen bed. The bed upstairs has a Woolrest woollen underlay between the mattress and bottom sheet. I missed the warmth it gives. Waking overnight to turn over I could feel warmer especially where my body was in contact with the underlay compared to no underlay. Best of all was sleeping with Myra next to me again.
Next achievement will be to maintain my Rev-lite trial progress, continue regaining strength and fitness and a return to work part time.
As I get better I am thinking less of myeloma, illness and myself. Now it is other things as well, signs of getting back to normal.

Rev-lite trial: end of cycle 1.

Tuesday 25th May 2010 I completed my Rev-lite trial cycle 1 (28 days).
It was good news, the test results indicate that I am responding well to the new treatment. Because of the positive results I now start cycle 2 which again is 28 days.
Link: Rev-lite clinical trial. Commenced 28 April 2010. (Opens in a new window)
Test results:
IgG, globulin, total protein etc are all heading downwards. The drop in my bloods (platelets, neutrophils, haemoglobin, red counts etc) during the 3 weeks of Lenalidomide still puts them within the “normal” range.
Side effects:
I have had no big reaction or side effects.
There has been fatigue in the afternoon and some tiredness. Some mornings I have a powernap of 20 to 30 minutes which sharpens me up. If I have a fatigue rest I usually sleep and/or doze for 1 to 2 hours in the afternoon.
There has been some dry skin so we split the body into 3; arms, torso and legs, moisturising one part daily giving total body moisturising of 3 times a week. Face, feet and top of hands seem to be the worst.
Day 9 Myra noticed a rash appearing in two spots on my back middle left, not itchy. We contacted the trial nurse who said to monitor. By the next day the rash had reduced disappearing on day 11. We think it was a heat rash.
Day 15 my mouth started to feel “furry” and the bottom lip became tender. My doctor talked me through saline solution, mouthwash and regular teeth cleaning which has helped. I have always used lip balm, just had to increase the use.
Dexamethasone gave me hiccups during the first few days (1 to 4) usually during and after food. No hiccups after the second or third lot of dexamethasone days 9 to 12 and 17 to 20. Sleep was good with only a couple of days of dexamethasone sleep disturbance.
Myeloma:
The 3 soft tissue plasmacytoma on my skull have reduced about 70% in 1 cycle. (70% that’s incredible, way to go Sid, calm down, calm down.) All my myeloma friends know the feeling!
At day 1 I had bone pain at my sternum extending to my left side. Coughing was painful. That pain has reduced.
I still have rib pain middle back both sides, left side worse and general back pain, reducing just a little, still work in progress.
Constipation:
I have some constipation originating from Lenalidomide, dexamethasone and Oxycontin. To control constipation I use Laxsol laxative at morning and evening meals varying the dose as required taking more during dexamethasone days or if there is no motion for 2 days.
Myra makes sure my meals include plenty of fruit and vegetables, drink 2 Litres of fluid a day and eat Kiwifruit (Kiwi gold).
I take the constipation seriously and record my Laxsol and motions in my diary. The aim is one motion a day.
Right femur, Lytic lesion and fracture:
My leg continues to improve.
A bone fracture usually takes about 6 weeks to heal. It is 5 weeks since fracture so I can now use the leg more.
My new goal now is to be “walking” with one walking stick then move to walking normal.
Currently I am walking with the big walker so the new goal is achievable.
The other goal is to drive the car but first I have to walk.
One fear I had with my right leg was cramp from the Lenalidomide. I take a calcium and magnesium vitamin to assist that, so far no cramp.
Pain relief:
When I left hospital my dominant pain was the right femur fracture and general leg pain from the operation.
My pain relief was Oxycontin slow release capsules, 40mg morning, 30 mg evening and Oxynorm immediate release capsules. This was reduced on day 17 and 18 to 30mg and 20mg and is about to be reduced again. The dominant pain now is myeloma back and ribs. I have not used Oxynorm since day 1.
Peripheral neuropathy:
It is recommended not to take alpha-lipoic-acid on days one has Valcade.
I have some peripheral neuropathy from previous thalidomide treatment and take alpha-lipoic-acid capsules and vitamin B to reduce the symptoms. My haematologist said alpha-lipoic-acid has no interaction with Lenalidomide that he is aware of but just in case I reduced my alpha-lipoic-acid capsules from 1200mg a day to 600 a day. My decision, on reflection it should have been all or nothing. Day 23 I started to feel numb and cold feet. I have since resumed the alpha-lipoic-acid back to 1200mg per day, again my decision.
General:
Myra has returned to work after taking 4 weeks off to look after me. I certainly needed her in the first 2 weeks as I recovered from the leg rods and fracture. The second 2 weeks became a game of “what can Sid do for himself today”, a gradual process of regaining independence.
My myeloma bloggers and Lenalidomide web information have said if any problems or side effects arise from Lenalidomide it will be during the first cycle. Now I have completed cycle 1 I anticipate the worst is over and look forward to progressing through to the end of cycle 2 without incidents. That leaves me to focus on getting my right leg and walking back to normal.

Links: (Links open in a new window).
Lytic lesion right femur. Occurred April 3 2010.
Lytic lesion right femur update. April 8 2010.
Right femur fracture. Occurred April 14 2010.
Loss of independence. May 16 2010
Lytic lesion right femur update 2. May 23 2010