5-16-1957 / Class of '96 / Type: Kappa
light chain / Bone involvement, PSCT, mini-allo /
mini-allo / Died: 5-20-03
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.
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.
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?).
May 1996 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!!!
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.
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. 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.
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!!!
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.
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. 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!!
April 1997 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!! 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!
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 YOUR body and ultimately the choice of treatment is up to YOU! Do your homework, listen to your doctors and decide which treatment YOU want. YOU must be comfortable with the treatment plan set out for you.
July 1998 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. Iíd 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. Once I had recovered from this virus, my November Ď98 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 heíd 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.
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 NOT 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 í99, I opted to go on to Thalidomide 200mgs per day.
October 1999 Chris and I attended the IMF seminar in Sydney in October í99. After the seminar we toured the city from one end to the other Ė 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 í99, 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. Iíve 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. Letís hope itís the pills helping things that has caused the pain to go. I had been having Aredia every four weeks up until December Ď99, but now Iím having it every three weeks. Hopefully this will help my bones as well.
January 31, 2000 Itís 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.
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. Then it was time to have a catheter placed so that drugs could be introduced, and blood taken at a momentís notice if the need arose. The catheter was a Hickman catheter and I wouldnít 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!!
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.
Then it was on to the aphaeresis 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 itís work, my blood was sucked out of my arm, the cells spun off in the machine and stored, then my blood Ė 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. TipÖ Take a good video to watch to make the time pass!!
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. Iím 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!
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.
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!
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 can 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!
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.
My Thalidomide History 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!
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!!!
September, 2000 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.
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?!
November 2000 and January 2001 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.
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.
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!
March 2001 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.
May 2001 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.
June 2001 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!
July 2001 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!!!
September 2001 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.
October 2001 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.
November 2001 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.
December 2001 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.
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. Of course, if the higher dose of Thal kicks in, I won't have to worry.
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.
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.
January 2002 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!
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.
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.
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!
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!
February 2002 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....
March 2002 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.
April 2002 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!!
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?!
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.
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.
May 2002 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.
June 2002 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.
All prayers, good wishes and positive vibes gratefully accepted.
July/August 2002 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!!!
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.
September 2, 2002 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!
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.
September 17, 2002 Tomorrow, Wednesday, is my last day of freedom for a while!! Thursday morning I have to be at the hospital at 8:00am for my Hickman to be put in, then Friday it all starts. :~(
I'm just a wee bit concerned about the chemo that is supposed to suppress my immune system - but not completely deplete it - when I have bugger all immune system left anyway!! At my last blood test last Monday my platelets were 47, WCC 1.86, neuts 0.91 and HgB 116!!! There's not a whole lot to knock down, I'm more than half way there now!! I think I'll speak to Andrew to see what he proposes to do re the dose of chemo I'm to get. At least my shouler/chest area is feeling better now after having my port removed. It's still a tiny bit sore, but nothing to speak of now.
September 23, 2002 (From Chris) Pat didn't have a good start to her pre-transplant admission when her Hickman was supposed to be inserted at 10.30am last Thursday and she finally got back to her room at 7.00pm!! The Alfred is a big city hospital and several emergencies during the day meant her schedule was put back seven times-on one day! On day 2 she started with Fludarabine with Atgam on day 3 which will go for 10 days. Tomorrow (Tuesday) Melphalan is given for 2 days and Cyclosporin starts with Mycphenolate on the following day. She had a strange light headed reaction to Benadryl and this was changed to Claritin which seemed to work well.
When I left her this afternoon her temperature was rising and a broad spectrum antibiotic has been given with cultures taken to determine the cause. Apart from all that she is still in fine form and has all of the nurses laughing, as we all expect. Pat's primary care nurse has been nominated to collect the donor cells tomorrow, which thrilled her no end, from New South Wales and will fly back on Wednesday afternoon, Aussie time, and at this stage the transplant will go ahead at approx. 8.00pm on Wednesday evening. So fingers crossed, prayers said and all the good vibes for then. Her original donor was across the other side of Aussie in Western Australia but after looking closer at Pat's blood antigens a better match was found. We are trying to get hospital access to the net but until that happens I will keep you all informed of Pat's progress. All for now, Chris
October 6, 2002 (Chris) When most of you last heard from Pat or myself we had probably told you about her having a really bad time during the week. The doctors now think that this was due to the cells engrafting as she has done a complete turnaround in 2 days! Her WBC have gone from 0.01 to 1.9 and Neutrophyls from 0.02 to 1.86 and her platelets and haemoglobyn are holding well. She goes on to oral cyclosporin tonight and the only remaining iv will be for Vancomycin at night. She was allowed to go outside for a couple of hours today and didn't really want to go back- I wonder why?? She is obviously still very weak and it will all be a very gradual process but she is doing extremely well and the docs are talking about her coming home around mid-week! When she does come home she will be going to outpatients clinic on Mon/Wed/Fri for checkups and anti-rejection drug IVs until around day 84 post transplant. But-she's on her way and keep those good vibes coming. Cheers, Chris
October 9, 2002 I've broken out of 7 East. It's sooooooo nice to be home. I've just had a relaxing bath and am now ready for my own bed!! Lovely. Thank you all once again for all my lovely cards you sent to me while I was in hospital. It was terrific to see the mail come in each day!! :~)
My counts today were more exciting than the other day when I posted - WCC 7.05!!!!! Neuts 2.18, platelets are still hangin' there at 59 - and I haven't had any more for about three days now - and my HgB after having the 2 units yesterday is now 115. Not bad, huh??!!
I now have to go back to the hospital every Mon, Wed and Fri for treatments - Gancyclovir and Intragam. The Intragam only comes on a Wednesday. There will also be loads of blood tests etc to check the cyclosporin levels etc. Fingers crossed all goes well and I won't have to be admitted again.
However, for the moment, I'm home and I'm enjoying it. :~)
October 29, 2002 Just a quick post to let you all know how I'm getting on. I now have a lovely rash all over my face, down my neck and a little on my chest and back. The worst part is below my ears and down my neck a little. It's prickly itchy and driving me nuts at the moment. Andrew saw me yesterday and gave me some steroid cream to put on it which is helping, but I know with my hands and feet, it took a few days to really kick in and stop it. I'm kinda pleased that I have this rash because it must mean that I have some GvHD which is what we want if we expect to knock the Myeloma off it's perch.
My blood pressure and pulse rate have risen rather impressively since being on the oral cyclosprin, but are being watched closely. I was on a BP med but was taken off it on the weekend as my feet and ankles were ballooning up sooo much. It was really painful and I couldn't have my feet down for more than half an hour before they'd begin to swell. Now that I've stopped it, I have feet and ankles again, but my BP has risen a bit, but not high enough yet for the docs to want to put me back on another one. We'll see what tomorrow brings.
My counts are all excellent - my platelets are actually the highest they've been for months at 109!! My WCC and neutraphil counts are in the normal range, and my HgB is 103 - a little bit low but higher than it was. Tomorrow I'm to have a BMB to see what effect my mini-allo has had. Fingers crossed for some positive results. I expect to have a loooong day at the hospital tomorrow as the BMB was added to the schedule, and Wednesdays are a longer day anyway than Mondays and Fridays because I have two IV drugs, as well as needing an infusion of magnesium most times.
Must go and lather some more cream on my bod to stop the itch - it is actually better now than it was on Sunday! When I saw Andrew yesterday, he asked me how I was, so I said I'm fine, but I look poxy, fix it!!! He looked at me and smiled his cheeky smile that I've become used to seeing, and said "we need some of this, you know!" :~)
November 20, 2002 Just a very quick update on me. I'm home from hospital again, after almost two weeks, and it was proven that I did indeed have a mild case of GvHD in my gut causing pain and the runs!! Yuk!!! It seems to have resolved now and my diet is almost back to normal. I'm taking Pred every day (60mgs) which we will start to wean after a month.
I was taken off Gancyclovir today because it's doing a number on my platelets which have dropped to 30!! I also have the beginnings of TTP - a kidney problem which causes havoc with counts - mainly platelets and HgB as well. I had one unit of blood before coming home from hospital on Monday to boost the numbers!
I'm taking sooooooo many tablets I shake, rattle and roll. The good thing is that I feel well and seem to be doing okay according to the doctors. I'm pleased with that! I'm thankful that the GvHD I've had has been mild, but hopefully enough for it to knock off the Myeloma cells!! Oh, and when I saw Tony on Monday, he said that although they haven't got the exact figures as yet, I do have evidence of male cells in my marrow!! Just call me Patrick!!!!! :~)
November 30, 2002 (Chris) Pat is back in hospital after a week of low blood levels across the board which suddenly plummeted about a week ago. When she came out of hospital 2 weeks ago she had a 'touch' of TTP which apparently affects people who have had a BMT and causes kidney dysfunction and generally low bloods. Last weekend started a week of going into the hospital each day to check blood levels and as the week wore on she got more depressed as the levels decreased and the experts were baffled. On Thursday last she was very low and she was admitted and put on a plasma exchange machine as this was the area where her bloods were apparently effected. Overnight her LD levels (kidney/liver) decreased rapidly and she has been on the machine each day with good results. However her WBC, Platelets & neuts continue to stay at low levels. The professor has said that the problems could stem from marrow suppressing drugs/TTP/Donor cell rejection caused by the drugs. The thing we worry about at this stage is that no one can give us a definitive answer and they are working on a combination of ideas to stem the tide. A BMB showed no activity in the marrow so a further BMB will be done on the other hip on Monday. If need be a further infusion of the original donor cells will be done. The uncertainty is the worst thing for Pat and all your best wishes, cyberhugs and previous experiences with this problem would be appreciated. Cheers Chris
December 19, 2002 It's the girl herself here! I can sure tell you I've had enough of hospitals!!!!! However, I still have some GvHD of my gut and a tiny bit on my skin again. The juggle of drugs has been a fun one and it still continues. I'm on a very small dose of Sirolimus (sp?) - 0.05mls!! I was taking 5 5mg pills which suppressed my marrow to absolutely nothing. That was why I was in hosp for the last two weeks or so - waiting for the drug to get out of my system so that my new marrow could actually do something! It seems that it it is SLOWLY doing something now but my HgB and platelets are still slow on the uptake. My ankles are continuously swollen at the moment but the docs are not overly concerned about that right now! At least I have passed the magic day 84 and am now looking forward to day 100 and maybe my counts sustaining themselves!!
I'm on 50mgs of Pred each day which Tony has reduced from 60mgs and now with the tiny dose of the other stuff, maybe some relief from GvHD will happen - not that I have a huge amount anyway. Fingers crossed.
Please don't expect an answer to many of your reply posts - if you want to reply to me that is!!??? - as I'm still not very interested at sitting at the computer for periods of time. There's still a lot going on with me and the lack of strength in my muscles - not to mention the lack of feeling because of good old Thal - is really giving me the runs. However, there is NO sign of the Myeloma at all!!!!! I just need a good dose of strength at the moment. I have a walker to help me get about which is fantastic, and a higher toilet seat... little things mean a lot!!! :~)
Good health to all, and I'm sorry I haven't replied to you all before now. I also really want to thank you all for the lovely cards and good wishes I received while in hospital. It was amazing the amount of love and support I felt I had from around the the world. You guys are the best.
Must go. My feet have been down long enough. I can't wait to get some "normality" back to my life. :~)
Aussie hugs and smiles (amazingly enough!!)
January 7, 2003 Me again. Went to the hospital yesterday as planned and was pleasantly surprised! Chris and I were making bets on how low my platelets would be. I said 4 and he said 3 - the last infusion of either blood or platelets was Friday week ago. Monday they were 14, but yesterday they were 16! Hmmm... dare I hope that I am making some of my own???
HgB was down though from 92 to 83, but I feel okay so Tony let me go. He decreased the pred from 40mgs per day to 30mgs now, so we'll see what happens. I'm still on the same baby dose (0.05mls) of Sirolimus and all other drugs (we are known as Cheryl Court Pharmacy now......you should see the amount of stuff in the cupboard!!) remain the same.
I had a positive CMV test back in early December, so Tony's being cautious re the Valtrex. Fair enough. Then he said I'll see you in a week!!!!!! Excuse me... did you say a WEEK????!!!! Wow!!!! Of course, if anything happens or I feel the effects of lower Hgb, then go to the hospital earlier.
So now it's fingers crossed and hope that nothing happens. I'm getting stronger too and have made little advances in not using the walker too! Slowly, slowly....
The temp got to 40c today... you should see my ankles!!! I'm sure the heat has helped make them swell more. Along with the added activity I'm doing - not too much - they are huge! I'm off to put them up again.
January 14, 2003 Hospital day again yesterday to have bloods and see Tony. I had to have 2 bags of blood on Friday and as a result, yesterday's count was 112 - up from 72! Not bad... they were BIG bags of blood! WCC was 3.28 but it was 10.3 a week ago! Neuts are okay at 2.99 (Tony was happy with that). All the other stuff they test for is about the same as it was last week. Platelets dropped a little from 16 to 12, but I haven't needed a platelet infusion since 27th December, so at least the platelets I have are mine. I'd love to have a lot more!! I have lots of recovering bruises that need more platelets!!!
Tony said that the graft is fragile and needs time to really take a hold.....which can take for ever, or kick in tomorrow. Given that I still have/have had (not too sure about this one) TTP and all the problems I had with the cyclosporin, and then the sirolimus suppressing my marrow waaaaay too much, I'm not surprised the graft is still fragile!! However, I'm at the level of sirolimus they are striving for, so fingers crossed that something will happen and my counts will sustain themselves a little higher and a little better sometime soon.
Chris, Danielle and I went to the local shopping centre yesterday too for a couple of things I saw in a sale brochure - and I wanted to get Danielle some new school shoes. It was sooooo good to go out to the shops again... haven't done that for about 5 months!!!
Aussie hugs and smiles to all
February 7, 2003 I'm still the same. Still have the runs from the GvHD. The Pred has been lowered from 30mgs to 25mgs now and my Sirolimus (the immunosuppressant drug instead of cyclosporin) has been lowered to 0.4 ml from 0.5. My counts are still up and down like a yo-yo and there is talk of giving me the extra donor cells I have, but T-cell depleted. Not sure when that may happen. I'm at the hospital again Monday - haven't been again this week so far - for clinic so it might be then. My marrow has been/is very slow to come back from all the trouble I've had so Andrew's thinking is to give it a kick start with more cells. Geez, I hope I don't get GvHD again!!!!!!!!
March 3, 2003 Went to the hospital yesterday for my usual weekly clinic visit and got some more encouraging news. My platelets are now 29 and I haven't had any platelet infusions for about four weeks. WCC was 6 and HgB was still 111 after a week - I had to have blood last Tuesday. I am off the Valtrex tablets and yesterday Tony took me off the Pred - I was only taking 5mgs now anyway. The plan is now to get me off the Sirolimus entirely as well. Also Tony suggested that my weekly visits now go out to two weekly. Aaaargh!!
The only black spot on the sheet is that there is visible protein again. It was 2 about a month ago and now it's 6. Tony said that this could be just a reaction to the allo transplant that some people do (hey, why not me??? I've done just about everything else??!!), or it could be the Myeloma. Let's hope that my new marrow will knock it off as I am officially all boy now!
March 20, 2003 Another quick update on me. Went to see Andrew on Monday. Wasn't feeling all that well Sunday and Monday - had the runs back again. Could have been another run in with GvH or it could have been a tummy bug going around - which my MIL had, and I took her out just before I felt unwell. :~(
Had to call him yesterday for the latest results of the paraprotein. Not so good. It's up to 18 now!! First, back in December it was undetectable but my marrow wasn't producing anything much back then either. The next one showed 2, then 6 now 18. I'm not very happy about this situation I seem to be in now. As my system has been so suppressed, my new marrow is slowly recovering only now. My counts are creeping up - platelets are 57, WCC was 11 and my HgB was 94, and I haven't had blood for three weeks. Trouble is the Myeloma is creeping back into the picture again too. I can only hope I haven't gone through all that I have for nothing.
I'm to go see Andrew on Monday again to talk about the combination of Zometa and an antistatin drug of some kind... a cholesterol pill. Then next Thursday I'm having a BMB to see what's going on in the marrow. Apparently I have 100% chimerism so you'd think that my donor's cells would do something, wouldn't you???!!!
So, as a result, I'm not a terribly happy chappy at the moment. What do I do next if this doesn't work??? :~(
April 26, 2003 (Chris) The weekly visit showed an increase in paraprotein from 25 to 41, obviously not good. At this stage Pat is due for her infusion of Zometa next Monday so we are hoping the trial combination of Fluvistatin, which she has been on for 3 weeks, and the Zometa will at least halt the paraprotein climb. She has severe right hip pain due to the Myeloma and we were put on the waiting list for an MRI of at least 8 weeks (!) at the Alfred hospital, a large public facility where Pat's specialists are located. With a bit of phoning around I managed to get her into a Private Hospital next Tuesday. Perhaps some radiotherapy may help her pain after we get the MRI result. So, its a wait-and-see situation with the non-toxic combination therapy, but we can't wait for long and options are running out.
May 5, 2003 (Chris) The weekly visit was not encouraging with the paraprotein continuing to climb and creatinine levels 4 times the norm. Pat has urgently been taken off the Fluvistatin/Zometa trial today and will commence oral chemotherapy in the morning, at this stage she is still at home. Starting the first 4 days with 40mg dexamethosone and 400mg cyclophosphomide daily with 50mg thalidomide every other day if she can tolerate it. Then from next week the same regimen once a week. This appears to be Pat's only chance to knock down the bad guys now so heaps of prayers and good thoughts are desperately required.
May 17, 2003 (Chris) Paraprotein down by 10 points after 1st week of treatment, keep fingers crossed for Monday's results after 2nd week.
May 19, 2003 Pat had a bad weekend with severe lack of energy-she couldn't walk 10 yards without falling in a heap and puffing her heart out. After our weekly visit today it turns out that the Cyclophosphomide regime of the past 2 weeks had taken a toll on her hg which was down to 66 (been up around 100 for the past two months)!! She had one unit of blood today and will have another 2 units tomorrow and will stay off cyclo (cytoxan) for the rest of the week. Apart from that her total protein is still on the decline and we may get some sleep tonight after a tense weekend.
May 21, 2003 After a seven-year struggle with the "beast" Pat quietly passed away last evening. To all of you with Myeloma or caring for MM-ers, keep up the fight, because that's what she did every waking moment in the last seven years. Thank you on behalf of Pat for all your support and inspiring words -- they in turn inspired her and she helped many people stricken with this terrible disease.
October, 2003: Hi everyone, in August I sent a letter to the local press who had done a series of articles on Pat and her fight with cancer in 2001, asking them if they would do a tribute article on Daffodil Day 2003. To my surprise they did and I have attached a copy for those of you who would like a memento of Pat. The girls and myself are progressing slowly and thinking a bit more positively than we have for a while.
Cheers Chris, Lauren & Danielle (Aussie Pat's gang!!)
(August 2001: From the Cranbourne News, Melbourne, Australia)
After a series of tests and multiple trips to the hospital doctors confirmed Pat had Multiple Myeloma, a cancer affecting bone marrow.
"I was devastated," said Pat. "My instant thought was thats it, see you later. I thought I was at the end of my life. At that time, the life span for someone with Multiple Myeloma was two to three years. I was scared and frightened, but Ive outlived those statistics."
Pat is married to a supportive and caring husband and has two children aged 12 and 16 - without them she said she wouldnt have had the strength to stay positive. A strong network of friends and keeping in contact with other Multiple Myeloma sufferers keeps Pat looking on the bright side.
"Life does happen after diagnosis," she said. "Im positive in any case, thats how I am. When I was in hospital (after her chemotherapy treatment) a nurse approached me and asked if I understood the seriousness of my illness. She couldnt accept how positive I was."
Pat knows she has to live each day as if it counts, because for her each day must count. With that attitude, Pat believes she will live longer.
After her chemotherapy, Pats health picked up. She is now in complete remission, but her cancer will never be cured. "This cancer will not go away," she said.
Pat can cope with every day activities such as driving a car and going for a walk. It takes her a little longer to get out of bed than it used to, but she knows her limitations and sticks to them like glue. Her spine and hips are the worst affected areas and if Pat was to fall she could break a hip like a woman of 70 would.
A member of Myeloma Australia and Australasia, Pat meets with other sufferers to toss around ideas about new treatments and share stories with each other. Myeloma sufferers from all over the world chat on the Internet, which gives Pat insights into new overseas treatments.
"My cancer is not common," she said. "Im really supposed to be over 60, black and male. But for whatever reason the age of those affected is coming down. I have to be proactive in my treatment as Myeloma is different for each person. At the moment I take Thalidomide, which is a sedative and dose dependant, there are some bad side effects though."
Pats positive attitude is inspirational to many Multiple Myeloma sufferers, who have said she helped them feel better about themselves and more positive towards their illness.
Recently, Pat achieved her dreams of riding a camel and taking a Harley Davidson ride in the Northern Territory. "Given the way I was when first diagnosed, I couldnt even scratch my nose, doing those things made me happy," she said.
"When I was diagnosed, I said it wouldnt stop me doing things. I lead a full life, I still get around a lot and I keep busy."
Daffodil Day is important for people like Pat, who desperately need the money raised for research into cancer. "Daffodil Day raises awareness and anything that does that is a good thing," she said.
It is doubtful a cure will be found for Multiple Myeloma, but Pat is always hopeful. "If I was a mouse, I could be cured," she said. "Turn me into a mouse for a few minutes."
"Cancer has touched a lot of people," Pat said. "There wouldnt be a family anywhere who hasnt been touched, whether it be in a minor or major way.
"Im the wellest sick person around at the moment touch wood."
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