Hold lightly....

The plentiful interactions of meeting and greeting, fun and laughter, joyous feasting during December ended with a bout of scratchy throat and cough. Suffice to say, it meant that I needed medications. 

The throat was not even severely painful, only a tinge of sensitivity but as usual it very soon followed by a cough. Maybe as I had the flu jab, the symptoms were not serious, so I am very thankful. Nevertheless the low grade fever of 37.5 had to be controlled . I started with a 3-day course of Azitromycin, immediately the scratchy throat was fine but the coughing persist. Consulted doctor and he recommended 7-day of Augmentin. By the second day, the fever was under control and the cough subsided. In view of my weak immune system, I recovered within a week, that I think is quite remarkable. I thank GOD and prayers.

I believe the flu jab did help to minimize the symptoms. Antibiotics are still very necessary and important to control infection and prevent a mild infection become serious. The only question I will need to ask my doc is whether it would have been better to start of with Augmentin rather than Azitromycin. Azitromycin is my regular antibiotic whereas Augmentin is new to me. Apparently using an antibiotic type too often too soon (last used in October) maybe be less effective ? Will need to discuss this with doc.

Actually I have to admit I was trying to recover as fast as possible when I suspect a tinge of a scratchy throat ....WHY............

We were booked to travel for 2 weeks! 

So it was a difficult decision we had to make - we cancelled the trip. Cancelled flights! Cancelled hotels! Cancelled guided tours! Cancelled pick ups! All the bookings were flexible so minimal penalty. Thankfully!

Once decided, we did not let it bother us. There is always another time to make the trip. Hold lightly... Don't need to be flustered by something like this.  

We are OK! 

Bon voyage, another day....

Stable is GOOD

I have to gladly report that the last M-band reading 13 Dec is at 3.5g/L (lower than Oct's 3.7) M-band has been at below 4g/L for the past 2 years with Revlimid 10mg and Dexa (reduced from 20mg to 12mg) as maintenance.This is stable and would be considered a good reading since the doctor recommended a pause from Revlimid since Nov but keeping a low dose of dexa 12mg once a week. I have been re-classified as being MGUS.
I deeply thankful for the present situation however all this is viewed with quiet trepidation since myeloma can be quirky. Thankful that having a break from Revlimid has improved my general well-being and I am more able to do most activities with less fatigue.  I have received many compliments of looking "good". PTL.

W. Anniversary

It was totally unplanned. But during our short trip to Penang with our friends, we celebrated our 33rd wedding anniversary. Our friends surprised us with a cake and a meal at a fine French restaurant (as part of the original travel itinerary and it happened that it is same day as our anniversary, how delightful!) They ended the evening by having us answer some birthday trivia, mostly to question Paul on how well he know me after all these years. It was all done in good fun! But the best was they tried to hum some Christmas tune with our names in it.... our friends are quite a creative fun-loving lot.

rickshaw - mode of transport

front of Blue Mansion

We visited some heritage sites and historical houses - Blue Mansion of rich towkay Cheong Fatt Tze. Of course not to be missed are the local Penang food - char kway teow, or luak (oyster omelette), ngo hiang, assam laksa, prawn noodle and chendol (the stall by the road was dishing out bowls after bowls to customers standing by the roadside).

For a couple of weeks I am not on medication - no dex, no Rev - and really I feel good, no fatigue! It may be a short break but I relish every moment of it. Next Monday, is appointment with doctor, will see what he suggests next.

Infusion time

As I am a new patient at NUH, I was not sure how treatments are done there and I am due for my Zometa infusion. The reception counter was quite empty, only another patient and myself;  after taking my appointment card, I sat for about 10 minutes and was called into the treatment room. It is a very spacious and brightly lit room - comfortable lounge chairs with extendable leg rest. Zometa infusion is only half an hour but the nurses still took effort to make me feel comfortable and explained what to expect. The placing of the needle was not painful (I won't say painless!), and no bruising after.
The first time experience at NUH is positive. I would say the nurses are friendly and polite. Thumbs up for NUH!












After the above pleasant activity, it was time for lunch and we decided somewhere nearby - Keppel Club. It is beautifully decorated for Christmas. There is humongous Christmas tree in the carpark. So much festivities during this season.

 

6th Christmas

This is my 6th Christmas since diagnosis  in May 2007. The first Christmas was  all quiet, no celebration. But really, Christmas is not about parties and presents. It is about GOD's love and gift of salvation. But the world has commercialise this special and unique occasion. As Christians we must not forget the reason for our celebration.

And yes, I treasure every opportunity to celebrate. I will evenly and sensibly distribute my energy and shall celebrate the days GOD has given me. How many more Christmases will I have? I don't know. Therefore I shall - Live today. Enjoy today. Celebrate. 

For several past Christmases I could not get around to buy gifts - just too tiring and too crowded. So I only give what I knitted and must admit some of my earlier works are quite "ugly" - they are probably stuffed in some drawers, never to see the light of day... 

I am still knitting and crocheting; and yes, I am still going to be giving out my handiwork! I just hope it will bring cheer and thanksgiving to family and friends! 

Cheer and Thanksgiving ........ because GOD is good, GOD is gracious ( to me! ) I am the "evidence" of GOD's love.

Psalm 103:17-18 (NIV)

"But from everlasting to everlasting the Lord’s love is with those who fear him, and His righteousness with their children’s children; with those who keep His covenant and remember to obey His precepts."

This year, I have been able to do some early shopping. And it truly gladdens my heart to be able! Early in the month, early in the day.... no crowd. Still it's just only for family, especially for the little ones. To be able to get into the Christmas momentum can bring delight to me. So I shall partake in all of these - shopping, wrapping of gifts, "gluttony" (?, no, I shall be sensible), planning two dinner gatherings - and with much gladness!

Through it all, we hear the Christmas story being sung, we are reminded of the true GIFT - even hope for those of us with such uncertain days ahead. 

"I have come they that may have life, and have it more abundantly." John 10:10

May GOD grant us an abundant "new normal" !

Delinquent...

I haven't blog for 2 months! What a delinquent! I cannot imagine how I have neglected my cyber friends and gone all quiet. Firstly and more importantly, I am well. The marker is reasonably stable and getting a few weeks of drug holiday to assess whether it is possible to have a Revlimid break. It is almost 3 full years of Revlimid and low dose dexa. 

Its not completely nothing, I am off Revl but maintain dexa 12mg once a week for a few weeks. Do bloodtest this week to assess the effect, before dropping dexa, if possible? Even having a break of just one drug equals to less fatigue and more energy. Trust GOD and pray wisdom for doc to know which way to go. 

Secondly, we have to move from Gleneagles to NUH (National University Hospital) as our doctor of 5 years (for personal reason) is unable to service us. Starting anew with another myeloma specialist can be challenging but he is friendly and knowledgeable. He is much busier and has lots more patients but so far very responsive via email! An episode of cold and cough was effectively and efficiently attended to and medicated by email communication. I am quite happy with it, since I don't have to get into the hospital crowd! 

I am back ....

physiotherapy helps

Yesterday I went for physiotherapy after a long break of almost a year. It was definitely good to have the joints at my back loosened up. I forgot how good physiotherapy had been for me. With a experienced therapist, the stretching and loosening certainly help to straighten me up.

A week ago I dropped "something" and my immediate reaction was to catch hold of it before it landed on the floor. For mm-ers with bad backs, catching hold of anything or anyone is not recommended, as it may injure the back further. I think this could have jarred my back though at that point in time I did not feel any pain or ache. I noted that subsequently when I had to sit for a prolonged 2 - 3 hours, I started to ache at my back. Therefore the need to seek help from my physiotherapist. It was the right decision.

The assessment from my therapist was actually quite positive. She noted that I look well! She added that the curvature at my back has improved and I am not as curved as before. Again, this is good. Though some of the joints are quite stiff, they easily loosened as she stretched and pressed on them. Even the tight muscle at the front, centre of the ribs was un-knotted. Some exercises were recommended to further facilitate self stretching. Every time I finished a physiotherapy session, I sense I walk straighter and taller and with the rib joints loosened, ribcage expands and breathing is made easier.

So, I shall go back again in three weeks time.  Physiotherapy may be of help to those with stiff and painful backs.

MM- Support Group #1

A few weeks ago we had our very own patient organised MM support group held at the premise of SGH - Singapore General Hospital. This is different from the IMF Patient Forums where we have a more substantive program with talks by Susan Novis and Dr. Brian Durie; as well as leading MM haematologists of SGH, NUH.

Back to our Support Group meeting - we had a great turnout. At this meeting there was more interaction with patients and caregivers, a large part of the time was devoted to having patients introducing themselves and sharing their personal experiences. There were a number of new faces and I could see they were very enthusiastic and felt that the session provided them an opportunity to learn from real lives. One patient was very fervent and convinced that his myeloma was caused by stress (at work) and strongly persuade us to re-order our lives and remove any existing triggers of stress. After 5 years (?) he had a relapse and he accrued to stress (at home?). Now he paints to remain and be peace with his surroundings.
Another patient insisted he had no stress.... although I cannot remember what he shared.

MM Support Group#1

On the whole, it was a fruitful and beneficial time for all. At each of these MM gatherings, I try to meet and talk to newcomers. With the familiar faces, we pat each other on the back, figuratively speaking - still alive and kicking!

NDP - National Day Parade

We are celebrating 47 years of nationhood - indeed a young country compared to the long history of many countries. During the NDP there were recollections of our short years of independence.  We did go through a traumatic time of Japanese Occupation, and earlier years of racial conflicts. Those memories of unrest and poverty remain deeply the hearts of our elderly statesmen-leaders. A large part of our present population did not witness the suffering years. We may take for granted our stable peace and prosperity. Thus it is good to recollect the early years of hardship amidst the annual celebration. And celebrate we did, with much ceremony as well as superbly outstanding performances and massive fireworks!

NDP fireworks

NDP at the Bay

NDP more fireworks

I remember going to a NDP once and being there in the crowd, was an indescribable experience, there is tremendous sense of patriotism that wells up from the hearts as we sing the various national days songs, clap and do the "Singapore wave". Subsequent years, I watched the NDPs on TV.
I think I would like to go a NDP one more time....

another Vidaza cycle complerted

Yep, another Vidaza cycle completed, all 7 days with total of 28 sub-q jabs of 100mg per day in 4 ml of solution. Most times, I just sit and wait eagerly for the jabs be quickly administered but this time I paid some attention to what I was getting. And presto, on last day, I got a "bonus" jab!! The fourth jab could not be administered, the content refused to get in.... ever happened before. So there... a fifth jab to round up the day. Nurse L was so apologetic but I assured her it was ok. Any explanation? was the needle defective? Don't know.

I have a big bruise but it is subsiding. It was caused by the endocrine doc. I went to see him about my low Vit D level and he was checking neck, ankles, leg and abdomen. But before I could stop him, he already pressed on an injected patch. Anyway such bruises are not uncommon. Even the waistband of my pants, if worn even a tiny bit too tight can cause them. I have forgotten several times and paid the price of having ugly looking bruises.  Well, these should disappear in a week or two.

I am glad to say that I am not too tired or fatigued in this cycle. Usually by 5th day, I do feel the effect. But it is the last day and I am quite alright! Maybe it is the energy-giving chicken soup? Maybe it is the increased dose of Vit D3 supplement prescribed last week by endocrine doc? Who knows? After all theses years I am still learning about my body's responses. But I certainly know that some of you are praying! and prayers work wonders!
I do hope that the increased dose of Vit D3 is helpful. I am not getting enough sunlight.

Anyway, "nadir" is 10 days' time, so I will still be careful. Never ever take for granted the potency and toxicity of these medications. In the meantime, I am enjoying the broadcasts of the Olympic games!

of friends ....and of knitting

Today as I stepped into a friend's car, she handed me a cut-out. It's about knitting. I put it into my handbag and said I will read later. And later when I got home I read it. The article from IHT was written in a charming and amusing way. The writer talked about going on a train ride with her knitting essentials. Though a "once-in-awhile" knitter, she recounted the pleasure of such a simple and mundane activity. On the train, while you are engrossed, "you disappear and you hear" You become invisible behind the wool and needles but your brain "asserts its will to stay alive" and pick up the conversations that go on between the passengers. She ended saying "I have accomplished nothing socially or professionally useful." It matters not. She has experienced the simple delight of being among people.

I thought to myself, how beautiful she has made of her train ride and of knitting. I can imagine myself, knitting... in a world of my own and yet senses the surrounds.
Of my friend, I thought, how kind and lovely of her to think of me and hold in good regards my simple activity. She often does in the most special way. For such a friend, my heart is warmed and cheered. She said, "I thought of you, fingers busy knitting, senses heightened, bliss..."

Knitting has been an activity I can do since physically curtailed by the dreaded myeloma. It has been my channel of inspiration. It kept me going. It was and still is my companion.

What would you say of a friend like this? She knows what would cheer me, what would be "bliss" to me, she knows my heart. She cares deeply to keep cheering me on over all these years. I thank GOD for such a friend.

report on BMB

Finally today we received the full report on the BMB Bone Marrow Biopsy done on June 12. Last week the nurse from the clinic called to say the result was good. But today we sat with Dr T and he went through in greater detail, what it meant.

MM is VGPR very good partial response - the percentage of plasma cells in the marrow is within normal limits, the morphology shows plasma cells to be minimally dysplastic and this suggests that MM is not in complete remission. There is residual trisomy 11(4%).  From 2 years ago, plasma cells was at 4-6% and mildly dysplastic - blebs and nuclear granulation; now it is at 0-1% and minimally dysplastic. There is significant interval improvement and clinically this can be viewed as a MGUS-like state with a small M-spike of 2.33g/L.

MDS is likely to be in remission. FISH  karyotyping shows no abnormal patterns. The high risk clone del7q (18%) appeared in April 2009 BMB was the reason for start of Vidaza, after commencement of treatment, it was not present in the June 2010 BMB (except positive for trisomy 5 and 11) and June 2012 BMB (totally none, no deletion and trisomy). It appears that the treatment with Vidaza over 3 years, has been effective. Dr. T believes that it is because of the concurrent use of Revlimid. He has elected to treat my MDS gradually and slowly with 5 cycles over the first year and 2 cycles in subsequent years as a maintenance therapy.

We could sense his cautious optimism but quiet confidence that this treatment protocol Rdz and Vidaza is working for me. Maintenance treatment is necessary to keep both mm and mds under control. When I can achieve remission for mm, that will be the time he will suggest storage of stem cells. He is hopeful.

Is Control better than Cure? The perennial question often being asked by doctors and patients. At least for me, too aggressive a treatment can make me very sick - I cannot even tolerate 25mg dose of Revlimid - it landed me in hospital for a week. 15 mg of Revlimid gives me more days of fatigue and muscle cramps in a week. 10mg is just about right. This may mean a slow journey but the days are reasonably good, fatigue is not prolonged and there is recovery. As Dr T said, the Asian patients cannot strictly follow the treatment protocols recommended by the drug companies. The dosage and the frequency may need adjustment. It is important to preserve one's immune system. Destroy the aberrant cancer cells but not ruin the immune system.
As for long-term use of Revlimid and the risk of secondary cancer, Dr T is recommending I complete another 5 cycles before switching to sub-q Velcade as maintenance therapy.  Revlimid has done good, not just for mm but for mds as well, since it is also a recommended drug. But it may be timely to consider making a switch and have another pathway of inhibitor.

To my non-mm friends, all this information may be alien to you. Just know that the doctor is happy, we are HAPPY, you can be HAPPY for us too!

ahhh... we all know that myeloma is a "sneaky disease", it can morph and turn "dangerous" but we are not going to let it scare us. We cannot live in fear that it will return in a "vengeance". It can also lie "dormant" and not give us much trouble. Whatever and however it may turn out in the future, we do not need to worry. Live the PRESENT and celebrate TODAY.

For me, I thank GOD.  For I know He is the one who gives restoration to my body. He is the one who grants me that one more day to live. Our lives are in His hands. He is Creator GOD. He can do far better for me than I can imagine and hope.
Psalm 27:13, 14 - "I am still confident of this. I will see the goodness of the LORD in the land of the living. Wait for the LORD; be strong and take heart and wait for the LORD."

For me, I shall continue to trust and depend on GOD.
Isaiah 26:3 "You will keep in perfect peace those whose minds are steadfast, because they trust in you. LORD, you establish peace for us; all that we have accomplished you have done for us."


Bloodtest results:

	1010 2011	1912 2011	2502 2012	0705 2012	0207 2012
	#13	#14	#15	#16	#17
M-band g/L	4.35	3.59	3.43	3.63	2.33
IgG (6.5-16)	9.83	9.12	9.37	9.21	8.59
IgA (0-7-3.8)	1.19	1.12	1.11	1.17	1.05
IgM (0.5–2.0)	0.45	0.48	0.37	0.61	0.43
B2M 607-2454	1573	1374	1334	1578	1426
Album (37 – 51)	39	39	41	39	37
WBC (4 – 11)	3.44	3.71	2.76	3.39	3.82
ANC Neutr	1.85	1.71	1.32 48%	1.35 40%	1.41 37%
RBC (3.8 – 5.4)	4.04	4.3	4.52	4.59	4.17
HGB (11.5 -16)	12.7	12.9	13.2	13.7	12.3
PLT 140 – 460	220	217	339	205	160
ALP Heat Stable	48	53	52	65	53
AST/SGOT (0-40)	30	52		29
ALT/SGPT (3-40)	54	60		42
Creatinine (0.4-1.1)	0.8	0.73	0.7	0.8	0.84
Calcium (8.4-10.4)	9.6	9.32	9.4	10.0	9.04
Vit D3 (18-78)				15.6	18.43
HbA1c	5.4		5.5	5.3
	1407 2008	1211 2808	1910 2009	1810 2010	1010 2o11
BMD hip	T-0.6	T -0.3 Z 0.7	T -0.1 Z 0.8	T -0.3 Z  0.6	T-0.2 Z 0.7
BMD spine	T-0.3	T -0.1 Z 0.5	T 0.0 Z 0.9	T 0.0 Z 1.0	T 0.4 Z 1.4