Christchurch, New Zealand
1963 / Class of '98 / Type: IgA-Lambda / Died 11-5-2003
Hello to you all, My name is Warren Harre. I am 34 and now live in Christchurch, New Zealand. I was dxed with MM Stage IIIA, IgA (6860mg/dL) Lambda in Feb. 98, after some 5 months of pain not dissimilar to a slipped disc. Prior to diagnosis I had been treated with anti-inflammatories, occasional analgesics and physiotherapy. I was living in Hong Kong prior to returning to N.Z. in Mar 98. For the last 2 annual medicals I had mentioned to my G.P. the small bump on the back of my head which didn't really bother me. But I did not mention the slightly tender lower ribs and "crackling" sternum. Well, for fear of sounding flippant , "You live and learn" !
On diagnosis and with my consent, my Haematologist. in Hong Kong started me on VBMCP (M2 protocol). Aredia 90mg was prescribed due to spinal compression fractures at T4,6,7,9. In addition there was some epidural encroachment at L2 & L3 plus lesions in my sacrum, two ribs, sternum and 3 in my skull.
Radiotherapy to L2/L3 was carried out over 10 sessions to control the soft tissue mass which was causing quite a lot of pain and reduced mobility. A further 5 sessions were targeted at the thoracic region to control pain at T9. During this period I was suffering from intense spasms in my lower lumbar region which lasted for about 2 - 3 seconds.
This was further aggravated by an uncontrollable cough reflex from the diaphragm. I believe the monthly dose of Aredia plus the R/T and a back brace helped quell most of the pain about 2 weeks later. I have been pain free since with good movement.
A decision was made to return to N.Z. for continued treatment in a "friendlier" environment in late March '98. My team in Christchurch gave me the choice of MP, or VAD (Modified) with a PBSCT. I have chosen the high dose VAD regimen and am currently on day 3 of 4 on my 2nd cycle of VAD via a side kick pump. I am taking Cimetidine 400 mg and Co-Trimoxazole 480 mg to prevent stomach upsets and pneumonia respectively. Dex. is prescribed at 40 mg daily for 4 days during infusion on course 2,4,and 6 and days 1-4, 9-12, 17-21 on courses 1 & 3. Courses 1 & 3 are 28 days; 2,4,6 are 21 days. I have had no serious side effects other than a slight burning sensation in my oesophagus at night and a slight tendency towards hiccups. The Dex seems to be quite "agreeable" with some water retention, flushing of the face and neck, slight tendency towards acne and a positive mood. Lets hope it stays that simple!
Unfortunately, I became refractory to VAD shortly after my 4th treatment and my doctors has suggested trying high dose chemotherapy without stem cell rescue.
August '98 - In late July it was decided to attempt a stem cell harvest even though the IgA and biopsy showed high levels of disease. The reason behind this was that any further treatment would most likely consist of high dose melphalan and this of course is toxic to stem cells. On July 21 my IgA was 48.5 g/l, B2M 2.38 mg/l and plasma cells 28%. On July 28 I received cyclophosphamide in preparation for the harvest. The following day I began G-CSF shots and I was harvested on the 6th and 7th of August.
November '98 - Some of you will recall that I underwent the above treatment over the month of September '98. Prior to the beginning of the treatment my IgA was 47 g/l and marrow biopsy indicated a plasma cell concentration of 28%. 23 days after commencement, IgA had decreased to 24%. My most recent blood work, biopsy and aspirate performed at 41 days indicated a further decrease in IgA to 18.8 g/l and plasma cell concentration at 7%.
As of yesterday I have commenced maintenance Interferon-Alpha 2a @ 3 million units, 3 times a week. The plan is to elevate the dosage if it is well tolerated. The expected flu like symptoms of Inf use were experienced but were not uncomfortable. These side effects "should" subside after a few weeks as the body assimilates the extra Inf.
Needless to say I am very pleased with the results so far. Long may the disease activity remain subdued.
I have just had a fantastic 2 weeks with a friend, who lives on the Gold Coast just south of Brisbane, in Australia. They had the Indy Carnival (motor racing) while I was there. Another friend of ours, Alan Jones a former Formula One World Champ, lives there and was also racing over the weekend. Most of the drivers were from North America, Bobby Rahal, Al Unser Jr and the likes. Absolutely fantastic weather, 78 and fine.
Bruce, my friend, and I then flew up to a resort at Hamilton Island in the Whitsunday group near Townsville on the east coast. Once there we planned a 3 day journey to bring his 40' launch back, where he had been "wintering" it, to the Gold Coast. We covered 600 miles in those 3 days. Great fun and my health never missed a beat. There must be something in dark rum and beer!
A really funny thing happened while we were at the resort. I was standing in the bar one evening having a "7 Up" when I got a tap on my shoulder, "What are you doing here?" said the female voice. I turned round and found it was 2 of my haematology nurses from home. They were attending a haem/onc nurses conference on the island! How uncanny.
December '98 - It has been a while since I've posted, but my results continue to be encouraging following my high dose melphalan without PBSCT in September. My progressive IgA's in g/L are as follows: Pre-treatment, 8/98: 47.5; Post,9/98: 23.5; 10/98: 17.5; 11/98: 13.6.
I have chosen INF for maintenance. I started with 3 mega units, 3x weekly for all of Nov, escalating to 6 mega units as of the beginning of Dec. I feel as if I am tolerating it well without any significant side effects.
I have a consultation late next week with my Dr. She wishes to discuss my proposal to add Prednisone to IFN. I base this on a SWOG study published in J.Clin. Oncol in March '98. It indicates a PFS median of 19 vs 9 months, and median survival from start of maintenance of 57 vs 46 months, for IFN+P and just IFN-A respectively.
January '99 - With Xmas and the New Year back in the closet for another year it's time for me to come out! Of the closet that is!
Some of you may recall I underwent high dose chemo.(140mg/m2) without PBSCT in Sept. '98. Currently I am on Inf-A, 3 mega units during November and now 6 mega units plus monthly Aredia.
The important thing is that my IgA paraprotein has continued to fall to date. My IgA figures of interest over the past months are; Aug: 47.5 g/l (pre-treatment), Sep: 23.5 (post treatment), Oct: 17.5, Nov: 13.6, Dec: 10.7.
At plateau I will be commencing a PBSCT. I am experiencing doubts about the timing of this procedure. Although pro transplant my general health has been fine to date and it seems a pity to upset it in the near future. Who is to say that the plateau will not persist for some months or longer without the PBSCT? This could mean a better treatment "may" become available without the need for a PBSCT in the short term. Wouldn't it make more sense to wait for the end of the plateau, whenever that may be, before proceeding?
On 20 January '99 an IgA paraprotein level of 11.2 g/l was taken. It was at this point that my Drs. felt it would be worth a try at coming off Interferon to attempt a further harvest. My previous harvest the year before had yielded good numbers of cells but the tumour burden had remained high at 48 g/l. There was some concern that because I had to be off Interferon for 6 weeks before they could attempt another harvest that the disease may "erupt" again. I felt the potential benefits of this far outweighed the negatives. In early February '99 I came off the Interferon and my IgA on the 11th February was 10.6 g/l. Unfortunately by the 3rd March it was 17.8 g/l and the 10th March, 19.2 g/l. Our worst fears had been proven.
It was at this point that I was told I would be being admitted in the next few weeks for an immediate PBSCT using the harvest from August '98.
March '99 - The protocol for my PBSCT was 200 mg/m2 of Melphalan administered on PBSCT-1. The next day my cells were given back to me and I commenced my recovery. Apart from a few incidents of dry retching on days 3 and 4, most likely because of the methyl prednisolone I/V from Day 1 to 5, and some gripping stomach cramps on days 5 through to 8, the whole process was painless. I was discharged from hospital on day 13. Over the next few weeks I did return to hospital on a number of occasions complaining of diarrhoea and high temperatures. The diarrhoea did persist for a few months afterwards and it was a concern to me. A course of Flagyl finally fixed it following all sorts of inconclusive tests.
December '99 - My recovery during the year has been otherwise uneventful and I have had a very good quality of life. I recommenced 6 mega units of Interferon A, 3 times per week and maintained 90 mg of Aredia every 28 days. At PBSCT+61 my IgA was 4 g/l. At PBSCT+138 in August '99 my IgA had further reduced to 3.3 g/l. It appeared that the PBSCT had been a resounding success and my Drs and I were hopeful of a lengthy plateau. Unfortunately in September '99 my IgA rose to 4.1 g/l and a subsequent biopsy showed 7% plasma cells. In October it had risen further to 4.5 g/l and in November to 4.9 g/l. It appeared as if I was relapsing.
A second opinion was obtained from a specialist in Australia and he concurred with the slow relapse. His suggestion was to commence an alternative therapy consisting of 50 mg, alternate day Prednisone and add Thalidomide. I have started the Prednisone but I am currently awaiting approval from the health Authority on the use of Thalidomide.
January 2000 - I commenced 200mg Thalidomide with the Prednisone and Interferon in mid January. After 4 weeks the Thal was escalated to 300mg and a further 2 weeks later to 400 mg. Finally 4 weeks later I increased to 600 mg. However my IgA continued to rise, fortunately from a low level of 5.5 g/l in January 2000 to 10.9 g/l in late June 2000. It was apparent that this combination of drugs was not working and that I was suffering from all the usual side effects of Thalidomide, most noticeably slight peripheral neuropathy in my feet, mild fatigue and a slowing of my thought processes. The decision was made to stop the Thalidomide in June 2000 and I continued with just alternate day 50 mg Prednisone and 6mIU Interferon 3 times a week. Strangely enough over the next few months I noted a gradual decrease in my IgA of 25%. Coincidence or not after stopping the Thal? My health remained stable throughout the remainder of the year but the peripheral neuropathy remained.
May 2001 - In May 2001 my IgA showed the first signs of rising again. It was now 12.9 g/l, a month later it had risen to 18.2 g/l. By mid July it was 22.9 g/l and in an effort to halt the rise, it had been decided to stop the Interferon and add pulsed Dexamethasone at 40 mg once a week in addition to alternate day 50mg Prednisone. I experienced incredible and painful cramping in my lower legs on this combination. The addition of dex had little effect at all and a month later in early August my IgA was now 33.7 g/l. In consultation with my haematologist in New Zealand I arranged an appointment in early August 2001 with Prof. Doug Joshua, a Myeloma expert in Sydney, who is also on the IMF Board of Scientific Advisors. Prof. Joshua wanted me to stop the dexamethasone immediately as in his opinion I was taking too many steroids. He felt that further chemotherapy was warranted and suggested D-PACE, a combination of Dexamethasone, cyclophosphamide, adriamycin, cisplatin, and etopiside. Arkansas had been using a modified version with some success called DT-PACE where Thal was added, but given my previous lack of response to Thal and the neuropathy I had developed, I felt that using Thal would be pointless. I had my third Hickman catheter fitted and I commenced the 4 day continuous infusion of D-PACE as an inpatient in Christchurch in late August/early September 2001. My IgA at day 26 from commencement was 33.8 g/l. Essentially this was no change from the level prior to starting the infusion. It was decided to proceed with another cycle in early October. At day 40 in mid November my IgA was 39.8 g/l. Quite clearly D-PACE was not working for me and I could see no point in continuing pouring ineffective chemicals into my body for no benefit.
December 2001 - After further discussion it was decided that there would be nothing lost in adding Thalidomide to the next cycle, which commenced in early December. I was now on DT-PACE. At day 14 my IgA had reduced to 28.3 g/l. Finally a response! This was a welcome Xmas present, however by this time I was in need of blood and platelet support. I had two bags of blood and a bag of platelets. Fortunately my platelets recovered well though my haemoglobin has been slow to rise but has stabilised around 105. I went on holiday with my family but for the next month or so I felt tired and stiff.
January 2002 - In mid January I returned for a consultation with my haematologist expecting to see a further reduction in my IgA. Wrong! My IgA was now 45.0 g/l! This was not good. I could see that the benefit of DT-PACE was short-lived and we both agreed that further treatment with this regime was pointless. What to do next? This was when my haematologist dropped a mini nuclear device. He suggested that now was the time to be considering supportive care, i.e. throw in the towel. Well "not for me" I said, especially when I felt pretty well. I had broached the subject of BLT-D (Biaxin, low dose Thal and Dexamethasone) as developed by Dr Coleman in New York some 12 months earlier and this had been met with some skepticism then. But now my haematologist had no objections.
February 2002 - By early February my IgA had risen to 53.8 g/l. Fortunately I had been symptom free throughout and leading a good quality of life. I started the BLT-D protocol, but a few weeks later I started experiencing shakes and chills during the day and at night. I felt it was because of the Biaxin, or Klacid as we know it in New Zealand. I put up with this for a week and finally spoke with my Dr who felt that I had an infection in my Hickman. Cultures were taken and the catheter was removed. My recovery was almost instantaneous and later I was found to be harbouring an infection. A month after starting BLT-D my IgA had reduced to 32.7 g/l. This was great news. Why didn't I insist on this a year earlier and save myself from the rigours of chemotherapy? Side effects were minimal though I'm sure there has been a slight increase in neuropathy in my feet and lower calves and slightly in my lips, but the alternative to this is not so good! Cramps are a problem about day 4 following the dex, which I take weekly on a Saturday. By taking Dex on Saturday it means minimum disruption to my working week. For the last 3 years I have been working as an aviation consultant and lecturer which helps to fill in the time between fishing and golf! To combat the cramps I'm taking a Calcium, Magnesium and Zinc supplement daily as well as 2 mg of Lorazepam on Saturday night to combat the sleeplessness associated with Dex, and again around day 4 for the cramps. Lorazepam is a mild sleeping pill which has the additional effect of relaxing the muscles. So far it seems to help. I have been on continuous monthly 90 mg Aredia since diagnosis in February 1998 and see no point in pushing to change to Zometa at this time.
April 2002 - In April my IgA rose to 36.4 g/l. My feelings were that this could indicate the beginning of yet another relapse given my roller coaster ride of the last 8 months, but the May results gave an IgA of 36.0 g/l. Once again welcome news for another month. It would be fair to say that I am approaching the end of the conventional and accepted treatment path. I will continue with the BLT-D until I become symptomatic at which point I will look at alternatives which will include Progen's PI-88.
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