Yeah... I have completed the 1st cycle...all 7 days. Monday was the last day for me. It was an extra long day with most time taken up by the infusion of immunoglobulin. Dr. T took extra precaution this time and I was in the day ward till 3pm. I was drowsy because of the med and continued to be sleepy even when I got home. But by the next day I was back to normal.
Last week, the daily jabs took no more than half an hour at the clinic and I was home by early morning. I must admit that it was not entirely "painless". The injection sites do turn red - size of 20ct/50ct coin and they feel sensitive... so my tummy is covered with red polka dots..boo hoo... it will take some days to clear. But I am really very thankful that I took all the jabs well without much distress because nurse Sarah told me of another older patient who is very lean and it was very hard for her to lift up the skin and fat to inject and she bruised easily. This patient is weak and doesn't have a good appetite. For me, I am feeling strong and I have a fantastic appetite and hungry most time and I eat very well. So. I have alot to be thankful for.
Yes, we praise the LORD for sustaining me every day and protecting me in ways I don't even know (Paul always tell me this)
The next two weeks I will be "resting" as the blood count is expected to drop (before it goes back up again). I will be homebound. Anyway with the swine flu situation, it is best not to be out in the crowd even if you are healthy....
I have enough yarn to keep me occupied and I am most happy knitting....
Keep cheerful!
Wednesday, 29 April 2009
Monday, 20 April 2009
Vidaza 1st cycle 1st day
I really ought to let you know that the 1st day of the 1st cycle went OK. It wasn't as horrible as I thought. Nurse Sarah prepared me for the 4 jabs on my "fat" tummy. It wasn't painful at all! I guess it must be the "fat", if I had been lean, it may be painful. Ha, ha, for once I am so, so thankful for my fat tummy. Actually it is very much like what diabetics have to do everyday when they give themselves insulin jabs. So, what is there to complain, if a diabetic has to bear with jabs daily, this is no big deal, lah.
Do not be unduly worried for me.... I can take it...
Of course, I know the BIG question is how I will respond to the drug injected into me...for that we will trust the LORD...
After the 1st day, it is too early to tell but I will persevere on; with your prayers, I will be able to bear with all things.
If I don't come on the blog....don't worry...I am alright. I will post whenever there is something to update. Keep cheerful.
[I will be busy knitting]
Do not be unduly worried for me.... I can take it...
Of course, I know the BIG question is how I will respond to the drug injected into me...for that we will trust the LORD...
After the 1st day, it is too early to tell but I will persevere on; with your prayers, I will be able to bear with all things.
If I don't come on the blog....don't worry...I am alright. I will post whenever there is something to update. Keep cheerful.
[I will be busy knitting]
Thursday, 16 April 2009
MDS - what is this?
A string of acronyms - MRI, BMA, MM and now MDS.
Myelodyplastic syndrome simply means the blood and plasma cells in the bone marrow are not normal. The BMA (bone marrow aspirate) has confirmed MDS. Since last year Dr.T was insistent that MDS was present from his microscopic investigation but the SGH (Singapore General H) did not. But this time round the SGH laboratory FISH probe confirms it.
So, I have both MM and MDS.
What is the state of MM (multiple myeloma)? After the recent round of 5months targetted treatment - I am at VGPR - Very Good Partial Response with M band at 5. How confident we are that it stays around this level, we don't know. Despite the full regiment and Mband has been fluctuating, most time creeping upwards. Dr. T believes that the underlying problem could be MDS. MDS could be standing in the way of treatment for MM. He wants me to start treatment for MDS. Untreated MDS may evolve into leukaemia (AML) in 5 to 7 years time. And he is hopeful that if MDS is controlled, it may help with the on-going management of MM. With the treatment he proposes, there is a 75% positive response. My blood count status at present is actually quite good and therefore I should be able to cope with the treatment.
The treatment with Vidaza will start on Monday 20 April - daily injections for 7 days and rest for 2 to 3 weeks. Full treatment may mean 6 to 8 cycles. OK, now the horror factor - there will be 4 injections each time, into the tummy subcutaneous fat, consecutively for 7 days. Arrrrgh!!!! Total 28 jabs!!! Arrrgh!!! Granted, I have a thick layer of tummy fat (thank GOD for my fat tummy)...but just imagine the number of pricks!!!!
The 1 to 2 weeks after the jabs, if I respond, it means that my blood count will drop and that is the time when I am prone to infection therefore I have to avoid crowd and be homebound. If I respond positively, the count should improve before I can go on to the next cycle of injections. This means that with this treatment my social activities have to be reduced. (Paul will be so watchful over every cough and sniffle around me... I will just have to stay away for awhile... still can go out to open parks etc...lah...I will not be in isolation...can meet one or two friends... )
I have a fews days to get out and do what I like - heh, heh. I am going to buy another batch of yarn to knit (be staying home more) and I am going for a crab fix...mmm. Black pepper crab...chilly crab....butter crab....mmm
Tired and weary..of course.. physically and mentally I am weary. It has been 2 years now..in and out of hospital visits etc etc. Isaiah 40:30,31 Even youths grow tired and weary, and young men stumble and fall; 31 but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.
I am no youth, so I legitimately can be tired. But this Scripture verse tells me that if I hope in the LORD, I can renew my strength, I can soar on wings like the eagles, I can "run" and still not be weary...yes, I can go on with the strength from the LORD. I can. I can.
My friends, pray for me to continue my hope in the LORD and to lean on the LORD for strength. "in quietness and trust is my strength"
Myelodyplastic syndrome simply means the blood and plasma cells in the bone marrow are not normal. The BMA (bone marrow aspirate) has confirmed MDS. Since last year Dr.T was insistent that MDS was present from his microscopic investigation but the SGH (Singapore General H) did not. But this time round the SGH laboratory FISH probe confirms it.
So, I have both MM and MDS.
What is the state of MM (multiple myeloma)? After the recent round of 5months targetted treatment - I am at VGPR - Very Good Partial Response with M band at 5. How confident we are that it stays around this level, we don't know. Despite the full regiment and Mband has been fluctuating, most time creeping upwards. Dr. T believes that the underlying problem could be MDS. MDS could be standing in the way of treatment for MM. He wants me to start treatment for MDS. Untreated MDS may evolve into leukaemia (AML) in 5 to 7 years time. And he is hopeful that if MDS is controlled, it may help with the on-going management of MM. With the treatment he proposes, there is a 75% positive response. My blood count status at present is actually quite good and therefore I should be able to cope with the treatment.
The treatment with Vidaza will start on Monday 20 April - daily injections for 7 days and rest for 2 to 3 weeks. Full treatment may mean 6 to 8 cycles. OK, now the horror factor - there will be 4 injections each time, into the tummy subcutaneous fat, consecutively for 7 days. Arrrrgh!!!! Total 28 jabs!!! Arrrgh!!! Granted, I have a thick layer of tummy fat (thank GOD for my fat tummy)...but just imagine the number of pricks!!!!
The 1 to 2 weeks after the jabs, if I respond, it means that my blood count will drop and that is the time when I am prone to infection therefore I have to avoid crowd and be homebound. If I respond positively, the count should improve before I can go on to the next cycle of injections. This means that with this treatment my social activities have to be reduced. (Paul will be so watchful over every cough and sniffle around me... I will just have to stay away for awhile... still can go out to open parks etc...lah...I will not be in isolation...can meet one or two friends... )
I have a fews days to get out and do what I like - heh, heh. I am going to buy another batch of yarn to knit (be staying home more) and I am going for a crab fix...mmm. Black pepper crab...chilly crab....butter crab....mmm
Tired and weary..of course.. physically and mentally I am weary. It has been 2 years now..in and out of hospital visits etc etc. Isaiah 40:30,31 Even youths grow tired and weary, and young men stumble and fall; 31 but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.
I am no youth, so I legitimately can be tired. But this Scripture verse tells me that if I hope in the LORD, I can renew my strength, I can soar on wings like the eagles, I can "run" and still not be weary...yes, I can go on with the strength from the LORD. I can. I can.
My friends, pray for me to continue my hope in the LORD and to lean on the LORD for strength. "in quietness and trust is my strength"
Tuesday, 7 April 2009
no favoritism
No favoritism! This proud grandpa is handling baby Thaddaeus very well plus our grandpup too. You can see that Snookie is not happy to be left out from all the excitement around the baby. From the first day Thaddaeus was brought home, Snook was very excited with this new "creature" and kept trying to get a closer look. By now, after weeks, he is more settled, he knows he has not been neglected.
BMA - bone marrow aspirate
Yesterday I had the BMA done. Let me tell you how it went.
Paul and I arrived at Gleneagles Hospital at 8.50am and we went straight to 7th floor, Day ward. nurse Sarah from Dr. T's clinic was already there waiting for us. We registered at admission and by 9am I was in the blue hospital gown. The Ward sister and 2 nurses recognised me (I was a regular in 2007!) and they were happy to see that I look well!
A doctor came in to insert the cannula and drew blood for MM tests. He was good, got everything done in one go. Of course I looked the other way, out the window at the bright morning sky. Paul too had enough of frequently seeing me having cannula inserted and blood taking, he stood at a corner. I am sure his heart ached many times when insertion into veins were not successful. But really these are minor inconveniences.
Dr. T turned up with Sarah and other nurse. He checked on which hip to do and was all ready with the equipment. Obviously I don't care to look at the size of the needle. He said this time he will do a local anaesthesia at the site. I could feel the needle going in and then it moved further deeper and deeper. Oh...I could feel all that. Cannot imagine what it would be like if one is awake and alert when the larger needle for bone marrow is inserted. Once done with the local anaesthesia, he instructed Sarah to sedate me intravenously. Ah...that when I floated into deep sleep! Soon I woke and the whole procedure was completed. I could see the clock on the wall and it looked like everything was done in 15 minutes! I was quite cheerful as I did not feel anything and thanked the doctor and nurse. I think I was at bit hype up... could be the effect of the drug used. Ha ha... I rested and actually dozed off when Paul went off to settle the bill and got some yong tau foo from the hospital food court. I managed to eat and drink almost all...good appetite..it was already noon. We came without breakfast, as I had to fast from the night before. Paul only had coffee and 2 slices of egg sandwich, most time, he is always looking after my needs and not care much for himself. We left the hospital at 12.30pm and was home in time for a meal of plain porridge. Plain porridge can equate to blissful contentment for me.....
I am thankful that the procedure for BMA went well. This morning I am still resting in bed, feel a bit tired but not worse off.
Paul and I arrived at Gleneagles Hospital at 8.50am and we went straight to 7th floor, Day ward. nurse Sarah from Dr. T's clinic was already there waiting for us. We registered at admission and by 9am I was in the blue hospital gown. The Ward sister and 2 nurses recognised me (I was a regular in 2007!) and they were happy to see that I look well!
A doctor came in to insert the cannula and drew blood for MM tests. He was good, got everything done in one go. Of course I looked the other way, out the window at the bright morning sky. Paul too had enough of frequently seeing me having cannula inserted and blood taking, he stood at a corner. I am sure his heart ached many times when insertion into veins were not successful. But really these are minor inconveniences.
Dr. T turned up with Sarah and other nurse. He checked on which hip to do and was all ready with the equipment. Obviously I don't care to look at the size of the needle. He said this time he will do a local anaesthesia at the site. I could feel the needle going in and then it moved further deeper and deeper. Oh...I could feel all that. Cannot imagine what it would be like if one is awake and alert when the larger needle for bone marrow is inserted. Once done with the local anaesthesia, he instructed Sarah to sedate me intravenously. Ah...that when I floated into deep sleep! Soon I woke and the whole procedure was completed. I could see the clock on the wall and it looked like everything was done in 15 minutes! I was quite cheerful as I did not feel anything and thanked the doctor and nurse. I think I was at bit hype up... could be the effect of the drug used. Ha ha... I rested and actually dozed off when Paul went off to settle the bill and got some yong tau foo from the hospital food court. I managed to eat and drink almost all...good appetite..it was already noon. We came without breakfast, as I had to fast from the night before. Paul only had coffee and 2 slices of egg sandwich, most time, he is always looking after my needs and not care much for himself. We left the hospital at 12.30pm and was home in time for a meal of plain porridge. Plain porridge can equate to blissful contentment for me.....
I am thankful that the procedure for BMA went well. This morning I am still resting in bed, feel a bit tired but not worse off.
Saturday, 4 April 2009
MRI result
Praise the LORD, the MRI result is good. There is no new intensity. The spinal column has not changed much from the MRI done end of 2007. Two intensities at the neck and spinal regions were treated with radiotherapy in 2007 and these are still visible but have not increased in dimension. Therefore no further treatment will be required this time round. I am so happy for this. As I still have muscular aches at my back and rib cage, we intend to have an orthopaedic surgeon look at the MRI and see if any recommendation can be made to reduce the aches and inflammation - which could be caused by the drugs or could be mechanical due to the multiple compressions and degeneration seen at the spinal column. These aches make me feel easily tired and exhausted, hopefully if something can be done to control it (that is without consuming more pain medication) my sense of well-being can be improved.
This is my rest week, no Revlimid, no Velcade, except one dose of Dexa - I do feel somewhat better, less dense in the head and hearing, dryness in the eyes and mouth are mediated with eyedrops and lots of drinking water. Definitely I am very thankful to the LORD and all your prayers as the side effects this time round are very minimal.
This coming Monday, I shall have a bone marrow aspiration. Again we commit the entire procedure to our LORD as He guides the hands of Dr T.
Our trust is in the LORD, Maker of Heaven and Earth. Amen.
This is my rest week, no Revlimid, no Velcade, except one dose of Dexa - I do feel somewhat better, less dense in the head and hearing, dryness in the eyes and mouth are mediated with eyedrops and lots of drinking water. Definitely I am very thankful to the LORD and all your prayers as the side effects this time round are very minimal.
This coming Monday, I shall have a bone marrow aspiration. Again we commit the entire procedure to our LORD as He guides the hands of Dr T.
Our trust is in the LORD, Maker of Heaven and Earth. Amen.
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