About Me

<body topmargin=0 leftmargin=0 marginheight=0 marginwidth=0> <table cellpadding=0 cellspacing=0 border=0 height="100%"><tr> <td valign="top" width=170 BGCOLOR="#003333" TEXT="#F7F7FF" background="1b0d4c00dduajq.gif"> <div> <TABLE BORDER="0" CELLPADDING="2" CELLSPACING="0" WIDTH="95" BORDERCOLORLIGHT="#C0C0C0" BORDERCOLORDARK="#808080" FRAME="BOX" RULES="ALL" ALIGN="BOTTOM" HSPACE="0" VSPACE="0" > <tR> <tD VALIGN=TOP HEIGHT= 46 WIDTH="91"><IMG BORDER="0" SRC="1x1.gif" HEIGHT="46" ALIGN="bottom" WIDTH="91" HSPACE="0" VSPACE="0"></tD> </tR> </TABLE></div> <bR> <bR> <bR> <bR> <DIV ALIGN="LEFT"></DIV> <div> <IMG SRC="0ba79910.jpg" border=0 width="121" height="145" ALT="Me" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></div> </td> <td valign="top" BGCOLOR="#FFFFFF" TEXT="#080000"> <div> <FONT SIZE="5" COLOR="#003333" FACE="Arial" ><B>               PAT'S AUSSIE ANTICS</B></FONT>     |     <A HREF="index.htm" TARGET="_top" TITLE=" PATS AUSSIE ANTICS"><U>home</U></A></div> <div> <A HREF="id23.htm" TARGET="_top" TITLE="My Family"><U>My Family</U></A>   |   <A HREF="id24.htm" TARGET="_top" TITLE="Family Photos"><U>Family Photos</U></A>   |   <B>About Me</B>   |   <A HREF="id28.htm" TARGET="_top" TITLE="Multiple Myeloma"><U>Multiple Myeloma</U></A>   |   <A HREF="id29.htm" TARGET="_top" TITLE="Myeloma Links"><U>Myeloma Links</U></A>   |   <A HREF="id30.htm" TARGET="_top" TITLE="Chris Diabetes Links"><U>Chris' Diabetes Links</U></A>   |   <A HREF="id31.htm" TARGET="_top" TITLE="Aussie Interests"><U>Aussie Interests</U></A>   |   <A HREF="id32.htm" TARGET="_top" TITLE="Favourite Sites"><U>Favourite Sites</U></A>   |   <A HREF="id33.htm" TARGET="_top" TITLE="Spare Time Stuff"><U>Spare Time Stuff</U></A>   |   <A HREF="id34.htm" TARGET="_top" TITLE="Cyberbuddies Pages"><U>Cyberbuddies Pages</U></A>   |   <A HREF="id4.htm" TARGET="_top" TITLE="Photo Album"><U>Photo Album</U></A>   |   <A HREF="id35.htm" TARGET="_top" TITLE="Newspaper Fame"><U>Newspaper Fame</U></A>   |   <A HREF="id36.htm" TARGET="_top" TITLE="Weather Page"><U>Weather Page</U></A>   |   <A HREF="id37.htm" TARGET="_top" TITLE="Contact Me"><U>Contact Me</U></A></div> <div> About Me</div> <bR> <DIV ALIGN="LEFT"></DIV> <div> <IMG SRC="0bb9cce0.jpg" border=0 width="412" height="206" ALT="Me and my car" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></div> <div> This is me with my little car, Kitt. </div> <div> (Remember Knight Rider on TV?)</div> <bR> <div> My name is Pat and I was 39 years old when I was diagnosed with Multiple Myeloma, Kappa Light Chain, in September of 1996. You can do the maths to figure out how old I am! My home is in Melbourne, Australia. My two girls, when I was diagnosed, were then aged aged twelve and eight.  </div> <bR> <div> I am a qualified dental nurse and I worked in a one man practice for nearly ten years. I was responsible for the developing of the x-rays, the mixing of the photographic chemicals to develop the x-rays, and mixing amalgam for fillings - which of course contain mercury! Put all that together - as well as an ancient x-ray machine - and I think a lethal cocktail was being mixed! Safety measures weren't quite as stringent twenty five years ago as they are now.</div> <bR> <div> I then left the practice to have my two wonderful children.  After a few years, I went back to work as a dental receptionist for a further six years, part time. I'm now a stay at home mum (is there such a thing?).</div> <bR> <DIV ALIGN="LEFT"></DIV> <div> <IMG SRC="1cf952e0.gif" border=0 width="149" height="46" ALT="Vine" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></div> <bR> <div> <B>May 1996</B> </div> <div> My story begins in May of 1996. I began having vague pains in my lower back, which, over the next three months gradually became worse. I was seeing a chiropractor - who wasn't doing anything to relieve my discomfort. I was having to hold my back when I sneezed, coughed or sat down. I then developed something akin to the flu which blossomed beautifully, with the added joy of an acute ear infection! I wasn't a very happy person. Two rounds of antibiotics later, I managed to shake it. Meanwhile, the pain in my back was getting worse, and I wasn't even able to dress myself!!!</div> <bR> <div> Near the end of August I collapsed with such severe pain in my back, I passed out. I spent the next week like an invalid in bed at home, then collapsed again for the second time. This time we called an ambulance and went to hospital.</div> <bR> <div> After being in hospital for almost a week - only being admitted as merely 'back pain' - I began to feel most unwell. I began vomiting and losing weight. My colour wasn't the best either. After copious blood and thyroid tests, it was revealed I had MM. A bone marrow and bone biopsy were done to confirm the diagnosis. Full body x-rays followed. Once diagnosis had been confirmed, I was started on I.V. fluids to reverse the hypercalcemia, which had become an obvious problem.</div> <div> After a discussion with the oncologist, a plan was put into action. As you can imagine, we were all in a state of shock! I was to start a high dose chemotherapy regime coupled with Prednisolone. The following day I was wheeled around to the day oncology ward at the hospital, bed and all, as I was unable to move under my own steam.</div> <bR> <div> Five hours later I was wheeled back to my ward, feeling surprisingly good! Then began the long process of getting my strength and mobility back. It was three and a half weeks before I was able to move enough to be able to have a shower - in a commode chair - and five weeks before I was able to go home. The doctors were most anxious to get me up and moving about again as quickly as they could. It was a supreme effort to walk to the door of my two bed ward!!! All of about ten feet!!!</div> <bR> <div> The chemo regime the doctor opted for was PCAB (Prednisolone, Cyclophosphamide, Adriamycin & BCNU) every four weeks, to be administered in the day oncology unit at the hospital. I was to have six treatments in all. This worked fine and we only had to put treatment off once because my counts were not high enough. I was able to have my family or friends with me while I was having the chemo, as well as being able to take videos or music with me - anything to keep the atmosphere pleasant and relaxing.</div> <bR> <div> The regular monthly blood tests showed a dramatic response over the six months of treatment to the chemotherapy. All the counts concerned came back down to within the 'normal' range. I don't have the exact figures at hand to quote, but the doctor said my protein level had plateaued out at 5g/L at the completion of the chemo. Not bad as the starting figure was 64g/L.</div> <div> I feel good and have very little bone pain now. It has been revealed by my skeletal surveys that I had compression fractures in T10-12 and L4-5. No wonder I had such terrific back pain!!</div> <bR> <DIV ALIGN="LEFT"></DIV> <div> <IMG SRC="1cf952e0.gif" border=0 width="149" height="46" ALT="Vine" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></div> <bR> <div> <B>April 1997</B> </div> <div> I had high dose Cyclophosphamide in April '97 to reduce the Myeloma activity more and mobilise my stem cells for collection. After this chemotherapy, to boost the production of my white cells, I began G-CSF injections. Once the injections had done their job, I had my stem cells harvested and stored for the transplant. I actually had this process done a second time to store some more - for a rainy day! After this chemotherapy my protein level went down further to 2g/L. Better news!!</div> <div> I went in to hospital on the 6th of June for my stem cell transplant. I had great hopes that this treatment would put me into remission for a long time, and so be able to be around for when the cure is found for this awful disease!</div> <bR> <div> I wish everyone who has this disease, a long remission and good health while they are waiting for the cure. It doesn't matter which treatment plan you opt for, just so long as it is the right one for you. There are many treatment plans available, but remember, the disease is in <B>YOUR </B>body and ultimately the choice of treatment is up to <B>YOU</B>!  Do your homework, listen to your doctors and decide which treatment <B>YOU</B> want.  <B>YOU</B> must be comfortable with the treatment plan set out for you.</div> <bR> <DIV ALIGN="LEFT"></DIV> <div> <IMG SRC="1cf952e0.gif" border=0 width="149" height="46" ALT="Vine" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></div> <bR> <div> <B>July 1998</B> </div> <div> In July/August/September of 1998, I managed to get hold of some sort of nasty virus which refused to go away. I had three lots of really strong antibiotics which finally gave it the push. I also had numerous chest x-rays as I was feeling very wheezy. We later determined that I was now an asthmatic, courtesy of the bug I had. I’d never had asthma in my life before! Once I got on to the inhaler, I felt a lot better and my wheezes disappeared over time. I still need it now from time to time.</div> <div> Once I had recovered from this virus, my November ‘98 test results showed a small increase in my protein level. Then again in December, another small increase in protein level. After discussions with Tony (transplant doctor), we decided to wait until January to see if indeed my counts were truly on the rise. They were, so we decided on a game plan. I had seen an article on alternate day 50mgs Prednisolone from the ASH Conference in America. I showed it to Tony and he’d already read of this treatment. We decided to give it a go and see what happened. It worked. It more than halved my protein level and put me on a plateau for four months. By this time it was July and we then thought it might be good to take me off Pred and see what happens. </div> <bR> <div> Bad move! When I went back six weeks later, my protein level had risen dramatically, so it was back on the Pred for me!  I now know that it is <B>NOT</B> a good idea to stop Pred cold turkey.  You have to stop this drug slowly and let your system get used to not having it.  Once again my protein level reduced wonderfully. Then in December of ’99, I opted to go on to Thalidomide 200mgs per day. </div> <bR> <DIV ALIGN="LEFT"></DIV> <div> <IMG SRC="1cf952e0.gif" border=0 width="149" height="46" ALT="Vine" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></div> <bR> <div> <B>October 1999</B> </div> <div> Chris and I attended the IMF seminar in Sydney in October ’99. After the seminar we toured the city from one end to the other – mostly on foot. We walked miles! On our return home I began complaining of pain in my hips, particularly the right one. I had a bone density scan done in December ’99, and alarmingly it showed that I had lost a lot of bone density in my hips!! I was in very real danger of breaking either, or both, my hips. After a lot of asking and pleading, I eventually got a CT scan done. This revealed that I had indeed lost a lot of bone. Action stations!! I phoned my doc at the hospital and told him of my bone density report. After that, I think I had all my doctors talking to one another! They decided on putting me on some tablets which would help my poor old bones gather some strength. I’ve been taking these pills (1200mg Calcium daily and 0.25mcg Rocaltrol 3xday) religiously now for about a month. The pain in my hips has gone and I feel really good. Let’s hope it’s the pills helping things that has caused the pain to go. I had been having Aredia every four weeks up until December ‘99, but now I’m having it every three weeks. Hopefully this will help my bones as well. </div> <bR> <DIV ALIGN="LEFT"></DIV> <div> <IMG SRC="1cf952e0.gif" border=0 width="149" height="46" ALT="Vine" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></div> <bR> <div> <B>January 31, 2000</B> </div> <div> It’s now been two and a half years since my autologous transplant (6/6/97). Where did all that time go? Perhaps I should enlarge on that experience for you. </div> <bR> <div> First I had a lot of tests done to check that my body could withstand the rigours of the transplant procedure. These included checking my heart and lung function. I had many blood tests and a bone marrow biopsy, to determine where the disease was at pre-transplant, so that comparisons could be drawn post-transplant. </div> <div> Then it was time to have a catheter placed so that drugs could be introduced, and blood taken at a moment’s notice if the need arose. The catheter was a Hickman catheter and I wouldn’t have known it was there. A catheter is an essential part of any transplant as the patient is usually hooked up to a few pumps for the delivery of antibiotics, blood, TPN etc, and it would be extremely difficult to have IVs in veins for all of these!! </div> <bR> <div> Then came the high dose Cyclophosphamide (Cytoxan) to mobilise all the cells into action. After this I had G-CSF injections to over stimulate the production of cells, so there would be ample to collect for transplant. </div> <bR> <div> Then it was on to the apheresis machine to harvest my stem cells. This was a painless procedure where I was hooked up to a machine which looked like a large washing machine! I had an IV hooked up into one arm, and as I had a Hickman catheter, the other end of the line was hooked up to this, thus completing the circle. Once the machine began doing it’s work, my blood was sucked out of my arm, the cells spun off in the machine and stored, then my blood – minus the stem cells - returned to me via the catheter. I was hooked up to this on three occasions and harvested enough cells for two transplants. Tip… Take a good video to watch to make the time pass!! </div> <bR> <div> Once this was done we were set to move on to the transplant. Protocols vary from country to country, hospital to hospital. The protocol that my hospital used was high dose Busulfan tablets and then high dose IV Melphalan. I’m not sure of the dose of the Busulfan, but the Melphalan was 200mgs per m2. I was allowed to go home after these treatments were given, and was to return to the hospital regularly until such time that my counts were too low to safely stay at home. This turned out to be one week from the day I received the Melphalan - just as my primary nurse predicted! </div> <bR> <div> Once in hospital, I had blood tests every morning to monitor what my counts were doing. Once my counts bottomed out, I had to receive platelet and blood transfusions. Some patients have trouble with mouth sores after high dose Melphalan, but as I sucked on ice all through the infusion, I never had any mouth sores to contend with. My GI tract felt the after effects of the chemo though, because I was unable to eat or drink sufficient to keep me well. I was hooked up to a drip which would feed me. This is called TPN. </div> <bR> <div> My primary nurse was really interested in aromatherapy and visualisation, so I had many enjoyable sessions with her, either while I was in the bath or in my room. This helped me immensely in coping with all that was happening. She also did a pretty good foot massage! </div> <bR> <div> After about seven to ten days my blood counts were on the rise again, and I began to feel better and better. The promise of home was put in front of me, but horror of horrors, I picked up an infection in my catheter. That grounded me for another week! I was put on Amphotericin (or as the docs referred to it - Amphoterrible, because it <I>can</I> have some awful side effects) for five days. Fortunately the infection cleared up and I was allowed to go home, just one day short of three weeks. I was never so glad to see my house as I was that day! </div> <bR> <div> I had to return to the hospital on a regular basis for blood tests and to see the dietician. I sailed along very nicely and had no complications at all. A BMB done three months after the transplant, showed no sign of myeloma cells, and my 24 hour urine sample was clear of Bence Jones protein. I was officially in remission. This lasted for a few months, then a small, but once again detectable, trace of myeloma was found in the blood. My protein level was 3 g/L, but stayed steady there and showed no signs of moving. </div> <bR> <DIV ALIGN="LEFT"></DIV> <div> <IMG SRC="1cf952e0.gif" border=0 width="149" height="46" ALT="Vine" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></div> <bR> <div> <B>My Thalidomide History</B></div> <div> I began taking Thalidomide in December 1999.  My protein level in both  December '99 and January 2000 was 20g/L. After taking Thalidomide for two months, my paraprotein level had dropped to 4g/L. To say that we were surprised and elated, would be an understatement! This was truly amazing. One more month, and again we saw the number halve to 2g/L. More celebrations! No-one is 100% certain about the mechanism this drug is using to halt the process of cell proliferation in myeloma, but something very positive is at work here! I'm still having Aredia every four weeks. That's something I would never miss! </div> <bR> <div> For the next three months, my protein level stayed static at 2g/L. It appeared I had reached a plateau. However, at my clinic visit in June 2000, I was told the paraprotein level in my blood was too low to quantify! Whoa!! More wonderful news. The same result was given for July as well, so I was given a small reprieve, instead of going to the clinic in one month's time, I could leave it for two. That meant I didn't have to front up to the hospital until September. Bliss! Two whole months of no hospital or doctor visits!! Yippee!!!</div> <bR> <div> <B>September, 2000</B> </div> <div> I have now been on Thalidomide for nine months, and this horror drug of the fifties and sixties has proven a wonder drug for me. </div> <bR> <div> My September clinic visit was this week and once again we were surprised, but very pleased and thankful, that no myeloma protein was able to be detected! Whew........a sigh of relief. All my other counts are within the normal ranges and I'm feeling pretty darn good! Once again I've been given a two month reprieve and my next appointment is in November.  Who would have thought it possible that Thalidomide could do such a wonderful thing?! </div> <bR> <DIV ALIGN="LEFT"></DIV> <div> <IMG SRC="1cf952e0.gif" border=0 width="149" height="46" ALT="Vine" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></div> <bR> <div> <B>November 2000 and January 2001 </B></div> <div> I've now had two more clinic visits, November 2000 and January 2001, and thankfully the results are still the same as before. The myeloma protein is too low to detect and all other counts are in the 'normal' range. I do have some peripheral neuropathy in my fingers and toes from taking Thalidomide for as long as I have, but given the fantastic results I've gained from taking it, I'm really reluctant to stop taking it.</div> <bR> <div> In December I had a nerve conduction test to determine if my nerves have been affected by the Thalidomide; I really didn't need one of these tests to confirm whether I did or not - I knew I did!! In an effort to try and reduce the symptoms of the PN, I reduced the dose of Thal from 200mgs down to 100mgs, with my doctor's blessing. </div> <bR> <div> At my next clinic visit in March, we'll see if this lower dose is still holding the myeloma down at an undetectable level. I think it is, but the tests will soon show if I'm right!</div> <bR> <DIV ALIGN="LEFT"></DIV> <div> <IMG SRC="1cf952e0.gif" border=0 width="149" height="46" ALT="Vine" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></div> <bR> <div> <B>March 2001</B></div> <div> Clinic visit was yesterday and all is still well. The paraprotein is still undetectable and all other counts remain in the normal ranges. My B2M was the only surprise - a good surprise - which dropped from 2.6 to 1.5. It hasn't been this low - and in the normal range - for a couple of years! All in all, a very pleasant clinic visit. We are going to leave things as they are - all meds and doses the same - and I'll go back for my next clinic visit in May. I'm so very pleased that this easy form of treatment has worked so very well for me. </div> <bR> <DIV ALIGN="LEFT"></DIV> <div> <IMG SRC="1cf952e0.gif" border=0 width="149" height="46" ALT="Vine" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></div> <bR> <div> <B>May 2001</B> </div> <div> Once again, thankfully, my paraprotein level is non-existent and all other counts are within normal limits. A recent bone density scan has also shown that the density of my spine is now in the lower end of 'normal' for my age and height! Sadly my poor old hips are still lagging behind, but they have improved slightly from what they were. </div> <bR> <DIV ALIGN="LEFT"></DIV> <div> <IMG SRC="1cf952e0.gif" border=0 width="149" height="46" ALT="Vine" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></div> <bR> <div> <B>June 2001</B> </div> <div> I have just returned from a holiday to the centre of Australia and walked miles out in the outback. I'm so lucky to have been able to go and take part in all the wonderful things we did. I walked everywhere we had the chance to. I drew the line at Uluru though! That was a little beyond me! This would have been the last thing I thought I'd be doing way back in '96! It just goes to show - NEVER give up!</div> <bR> <DIV ALIGN="LEFT"></DIV> <div> <IMG SRC="1cf952e0.gif" border=0 width="149" height="46" ALT="Vine" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></div> <bR> <div> <B>July 2001</B></div> <div> Clinic visit this month again showed that I was lucky enough to still be in complete remission, with no signs of myeloma showing up anywhere.  I have been truly lucky with Thalidomide.  My clinic visits have now been stretched out to two months!!  I have had monthly appointments for the last three years!!  This is great!!!</div> <bR> <DIV ALIGN="LEFT"></DIV> <div> <IMG SRC="1cf952e0.gif" border=0 width="149" height="46" ALT="Vine" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></div> <bR> <div> <B>September 2001</B></div> <div> Still sounding the 'all clear' where myeloma is concerned.  All counts in the normal range - white cells a little low, but not dangerously so, all the while I've been on Thal, but this is a usual side effect of Thal and one to be expected. </div> <bR> <DIV ALIGN="LEFT"></DIV> <div> <IMG SRC="1cf952e0.gif" border=0 width="149" height="46" ALT="Vine" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></div> <bR> <div> <B>October 2001</B></div> <div> I managed to get my dose of Thal reduced again to 50mgs from 100mgs.  It's been difficult to obtain here in Victoria, but Andrew seems to have done it.  I hope this will still hold the myeloma at bay and also reduce some of the PN I now have.  Fingers crossed.<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <DIV ALIGN="LEFT"></DIV> <div> <IMG SRC="1cf952e0.gif" border=0 width="149" height="46" ALT="Vine" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></div> <bR> <div> <B>November 2001</B></div> <div> Clinic visit was disappointing today as we learned that there is now a trace of myeloma protein visible, where there was none before.  The reading was still too low to put a figure to, but the reading was measured at 'less than 2g/L'.  It seems that the 50mgs dose was not enough.  After a discussion with the doc (my usual doc Andrew was on holiday) we decided to put the dose back up to 100mgs for a month to see what happens.  I may have done my dash with Thal now.  I hope not.  </div> <bR> <DIV ALIGN="LEFT"></DIV> <div> <IMG SRC="1cf952e0.gif" border=0 width="149" height="46" ALT="Vine" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></div> <bR> <div> <B>December 2001</B></div> <div> It seems that putting the dose back up to 100mgs didn't do anything.  My protein level rose to 4g/L.  Still low, but obviously on the way up.  After another discussion, this time with Andrew, we decided that we'd give it another month to see what happens.  Andrew left it to me to decide what dose of Thalidomide to take.  I decided to raise the dose to 150mgs, so with fingers crossed and bated breath, I wait for January's appointment.  </div> <bR> <div> I'm not all that confident that Thalidomide on it's own will still work for me now.  If this proves correct, the plan is to add Dexamethasone (Dex) to the Thal.  When these two drugs are used together the response rate is very impressive, so I'm hoping the same will happen for me.  Ofcourse, if the higher dose of Thal kicks in, I won't have to worry.  </div> <bR> <div> I have been extremely lucky to have Thalidomide work so well for so long for me. The median time to relapse, when taking Thal on it's own, is about eight months, but I have been taking it for two years!  All the drugs we take have a 'use by' date attached to them, because the myeloma cells eventually become resistant to the treatment being given, so a switch to another form of treatment is required.  Crafty little devils.  </div> <bR> <div> Myeloma is definitely not a 'one size fits all' disease.  Everyone responds to treatments differently, and even the same type of myeloma can be a totally different disease from person to person.  </div> <bR> <DIV ALIGN="LEFT"></DIV> <div> <IMG SRC="1cf952e0.gif" border=0 width="149" height="46" ALT="Vine" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></div> <bR> <div> <B>January 2002</B></div> <div> As I had suspected, but hoped was not right, my paraprotein had risen again.  Now it was 9g/L - up from 4g/L in December.  So, we have to do something more now because it was obvious that Thalidomide on it's own was no longer going to hold my myeloma in check.  Damn!</div> <bR> <div> Okay, so what will we do?  Andrew ran through some options for me to consider, but I decided I still wanted to try adding Dex to the Thal for a month to see what happened.  There are all sorts of ways and combinations to take these drugs, but the one we decided on for me to try was to keep taking the 100mgs of Thalidomide each night as I had been doing, and take 40mgs of Dexamethasone (Dex) one day each week.  </div> <bR> <div> I am very interested in trying a newer drug combination called BLT-D which combines the use of Clarithromycin, an antibiotic, with Dex and low dose Thalidomide.  It has had great success across the board for myeloma patients with very few side effects, and some patients have even lowered their doses to a very minimal one, but it is still effective in holding their myeloma in check.     </div> <bR> <div> Another option Andrew offered me was to enter into a trial he is running here, at the Alfred Hospital, with PI-88.  It seems that it is side effect free and Andrew is quietly confident that it is doing some positive things.  I'll be watching the outcome of that!  </div> <bR> <div> The side effects of Dex can be quite bothersome for many patients, so I was a bit nervous the first morning I was to take it.  However, I felt fine and apart from feeling very, very well, and full of energy, I had no other side effects from it!  Amazing!!  I found that sometimes, I get a slight feeling of heartburn, but a dose of antacid soon stops that in it's tracks.  I think I'm one of the lucky ones who really doesn't suffer too much from taking the steroids we myeloma patients must take!  For that I count my blessings!  Now I just have my fingers crossed that this combination of Thal and Dex works for me, and my protein level is lower when I see Andrew in Feb.  Wish me luck!    </div> <bR> <DIV ALIGN="LEFT"></DIV> <div> <IMG SRC="1cf952e0.gif" border=0 width="149" height="46" ALT="Vine" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></div> <bR> <div> <B>February 2002</B></div> <div> The results for this month were a little encouraging, but nothing to get too excited about just yet.  My protein level had slowed down and had only risen 1 point from 9g/L to 10g/L, instead of more than doubling as before.  Maybe the Dex was kicking in and next month we'd see a drop or at least a leveling of the number.  I asked again about adding Biaxin to the mix, and Andrew still wanted me to stick with Thal and Dex for another month to see what happens.  Still interested in BLT-D....</div> <bR> <DIV ALIGN="LEFT"></DIV> <div> <IMG SRC="1cf952e0.gif" border=0 width="149" height="46" ALT="Vine" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></div> <bR> <div> <B>March 2002</B>  </div> <div> It seems that the addition of Dex slowed the upward trend of my protein, but hasn't halted it.  Now the level is 12g/L - obviously going the wrong way despite adding the steroid.  So now what do I do?  I still wanted to pursue the BLT-D protocol that I had heard so much about so I went after it!  I phoned Andrew and spoke to him about getting my hands on some Clarithromycin, and he agreed that was the right thing to do and he would organise for the prescription to be in my file when I go to my clinic visit on the 25th.  In the meantime, I rang my local GP and asked him to write a prescription for me for the intervening days.  I now have all the ingredients for the BLT-D protocol.  Now that I have what I wanted, let's hope that I get the results I want!!  Fingers, eyes, toes, everything crossed for the next test results.</div> <bR> <DIV ALIGN="LEFT"></DIV> <div> <IMG SRC="1cf952e0.gif" border=0 width="149" height="46" ALT="Vine" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></div> <bR> <div> <B>April 2002</B></div> <div> Clinic visit was the 22nd and I found that after finally getting the treatment plan I wanted, BLT-D, it appears that it doesn't agree with me!  It had only brought down my protein count by 2g/L in a month, but not only that, my liver counts were waaaay off the planet!  If I kept on this treatment, I would end up with SERIOUS liver problems.  Andrew was pleased with my blood counts etc, but the liver was a major concern.  The only new addition that would have an effect on my liver like this is the Clarithromycin, so it had to go.  Andrew wanted me off the antibiotic right then and there.  After seeing the counts, I wasn't going to argue!!    </div> <bR> <div> I felt that as Thal and Dex didn't hold the myeloma back when I took it in January and February, removing the Clarithromycin and going back to Thal/Dex again would be of no benefit, so I opted to stop all drugs and go into the trial of PI-88 Andrew is running.  Now I have my lab rat hat on, or as Andrew corrected.....a sophisticated lab rat.  He is very pleased with the results he's seen from the trial so far, and still there are no reports of ANY side effects at all from those in the trials.  Sounds too good to be true, doesn't it?!  </div> <bR> <div> So, now I have stopped all drugs and will enter the PI-88 trial, should I qualify after the battery of tests I have to have beforehand.  I'm going to be tested from head to foot, including my heart, urine, blood and a BMB.  Fingers crossed that now I've stopped everything the myeloma doesn't go stupid, but on the upside, the side effects I've been having lately - mainly the cramps - may ease off a little now.  Sure hope so.</div> <bR> <div> Let's hope that should I get into the trial - and I don't see why I shouldn't be able to - this works well for me.  It just means a small injection under the skin on four consecutive days each week.  They are using Mon, Tues, Wed and Thurs, then nothing again until the Monday when I do it all again.  The trial will go for eight weeks, and if at the end of that time, I have responded, and continue to respond to the PI-88, I can opt to stay on it if I want.  Alternatively, if I don't respond to it during the trial, I will be taken off it and we'll then explore other treatment options.</div> <bR> <DIV ALIGN="LEFT"></DIV> <div> <IMG SRC="1cf952e0.gif" border=0 width="149" height="46" ALT="Vine" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></div> <bR> <div> <B>May 2002</B></div> <div> I failed to get on to the PI-88 trial as there is a problem with a clotting factor in my blood.  Nothing can be done to improve it, so after waiting 6 weeks to get on to the trial, and taking no drugs at all, I was so disappointed that I couldn't take part.  Meanwhile, my myeloma was slowly advancing and I have run out of the 'easy options' that I had been lucky with until now. </div> <bR> <DIV ALIGN="LEFT"></DIV> <div> <IMG SRC="1cf952e0.gif" border=0 width="149" height="46" ALT="Vine" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></div> <bR> <div> <B>June 2002</B></div> <div> It's off to hospital for me now to have some 'serious' chemo to knock the beast back down again, and then after that I'll be having a mini-allo.  Some time ago I was HLA tested for this and a match has turned up for me, and a very good match it is too!  He matched me on all the antigens that are tested these days - 14/14!  Now we just hope that I don't encounter any major problems and the whole procedure goes nice and smoothly.  First, I have to have two or three doses of chemo to bring the myeloma back into control, and then three months or so down the track, I will have the mini-allo.</div> <bR> <div> All prayers, good wishes and positive vibes gratefully accepted.</div> <bR> <DIV ALIGN="LEFT"></DIV> <div> <IMG SRC="1cf952e0.gif" border=0 width="149" height="46" ALT="Vine" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></div> <bR> <div> <B>July/August 2002</B></div> <div> I have now had two doses of DCEP (Dexamethasone, Cisplatin, Etoposide and Cyclophosphamide) and we are waiting to see the response I've had to these before deciding if I have to have another one or not.  If not, then we move on to the next step which will be the mini-allo transplant.  Yikes!!!</div> <bR> <div> The guy I have matched lives in Western Australia and it seems that we are a very good match.  The blood is tested here for 14 antigens and we match on all 14!  Hopefully this is a good thing for me!  Apparently I have been 'penciled' in for my transplant to go ahead in September some time.  Nothing definite has been set as yet.  </div> <bR> <DIV ALIGN="LEFT"></DIV> <div> <IMG SRC="1cf952e0.gif" border=0 width="149" height="46" ALT="Vine" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></div> <bR> <div> <B>September 2002</B></div> <div> The DCEP I had lowered my myeloma protein down to 7g/L from 26g/L, so I'd say it did it's job.  Now the scarier stuff starts!</div> <bR> <div> I'm booked to have all the pre-transplant testing done on the 5th and the 9th of September.  Next I am to have my faithful little port removed on the 12th because it can't handle all the transplant stuff.  Then I will be admitted to hospital on the 19th of September to have a Hickman catheter put in.  Chemotherapy then starts the next day in readiness for the transplant which happens on the 25th.  Please spare a good thought or two for us all, and any prayers you feel like sending this way will be accepted readily.  Hoping like heck for a good result from the transplant, and that I can emerge out the other side not too badly battered by all of this.</div> <bR> <div> Stay tuned............. </div> <bR> <bR> <DIV ALIGN="LEFT"></DIV> <div> <A HREF="id25_m.htm" TITLE="About Me"><U>Back to top</U></A></div> </td> </tr></table></body>