Bendigo, Victoria, Australia; email@example.com
1946 / Class of '02 / Type: IgG / Bone involvement / Radiation, chemo, Revlimid / Updated: 9/08
I was born in Oakland California and migrated to Australia in 1969. I have lived here since then (35 years), married an Australian and have four children and three grandchildren.
My Multiple Myeloma story is not unlike that of many others, except that the ‘numbers’ are all different because I live in Australia! It all started 2 ½ years ago (July 2002) when I began having a backache without having had an accident. I went to an osteopath who gave me massage and ultra sound, but when the pain did not get better he suggested further x-rays. This was the beginning of every test available – normal x-rays, nuclear x-rays, bone density x-rays, CAT scans, MRI scans, complete blood pictures, 24 hour urinalysis, Bence-Jones, paraprotein levels, and finally a bone marrow biopsy. The net result was that I had MM (IgG) – 70% of Myeloma in my bone marrow and a paraprotein level of 35. It was decided to treat the MM with radiation to the 5 crush fractures in my spine (which were the cause of my pain) and chemotherapy. The radiation was supposed to help with the pain, but unfortunately it did not work. After two bouts of chemo I ended up with a perforated bowel – TWICE and all chemo had to be stopped. Two major operations (bowel resections) followed by massive abscesses after the surgery meant that I was in hospital for almost three months, but I finally was able to go back on a modified chemo program (Cyclophos) and 12 months post diagnosis was able to return to work (desk job) for four hours per day. The oncologist feels that the bowel problems may have been caused by the dexamethasone, so that has been eliminated from all treatment. I has all the usual side effects from the chemo, ie: weight loss, nausea, tiredness, etc. For the next 12 months I was stable, with bone marrow biopsies showing 15% MM and paraprotein at about 11. Unfortunately in September 2004 the MM results started increasing and the paraprotein is now 21. In October I had further radiation to my left femur because of acute pain when walking. This treatment has been very successful and the pain has been reduced substantially. My current treatment is durogesic (morphine) patches (175mg) for pain every 48 hours and Aredia (bone strengthener) once a month.
Unfortunately last October I had to retire from work as the pain and exhaustion were just too great, even though I was only working 4 hours per day. Now that my days are my own, I am actually feeling much better and am able to manage my ‘good’ hours to my advantage! I’ve found that I have 4-5 hours per day when I can walk, garden, go to the theatre, shop and generally live my life, provided that I can occasionally lie or sit down and take the pressure off my spine. The MM makes me extremely tired and I need to nap most afternoons. I recently started having a bit of break through bleeding and after a D & C it was found that I may (1 in 4 chance) have uterine cancer as well. Yesterday the gyn/oncologist put me onto 200mg of Provera. My oncologist will be starting me on 50mg of Thalidomide next week to try and stop the MM progression.
I am being treated at my local regional hospital as well as having input from specialists at the Peter McCallum Centre in Melbourne and Monash Medical Centre in Melbourne.
Multiple Myeloma has been a real roller coaster ride for me and for my family and friends. The pain was huge at the start, but I have learned to live with it – with the help of the morphine. Then the fear of dying from the operations, the fear of hearing that MM is ‘terminal’, and being told that I was not a suitable candidate for stem cell transplant all seemed to make the picture bleaker. However, I am now over 2½ years post diagnosis and happily living life, moderated though it may be. This year I hope to travel a bit, and generally do what most people do when they ‘retire’ – even though mine was a forced retirement I intend to make the most of what ever time I have left. MM has made our close family even closer and has shown me that the friends I have made through the years are wonderful. I wouldn’t wish this on anyone, but there is something positive about being ‘aware’ that you are dying. MM has enabled me to truly value my family and friends and has given me the time to share everything that is important to me with them. I have also had the joy of getting to know many of the medical staff working in the cancer field – fantastic people, one and all!
I am happy to talk to anyone going through this journey and to share with them some of the highs and lows, good times and bad as there are not too many of us around with this particular cancer. My husband, who is also defined as my ‘carer’, is also happy to talk to others facing the challenges of living with someone who has cancer. While MM is described as incurable, it is still possible to ‘live with multiple myeloma’!! As no one seems to know what the interactions will be taking high dose Provera as well as Thalidomide I’ll keep you informed!!
Update, February 2006: In November 2004 I had to retire from my work with the Victorian Department of Human Services where I had worked with families who had children with intellectual disabilities. I hated having to retire because my brain is not affected by MM, but my pain had increased and I was constantly tired. Even just working 4 hours a day at a computer and talking on the telephone was exhausting, and I’d have to come home just to sleep so that I could go back for another 4 hours the next day. Suddenly I was a retired person, with nothing but time on my hands!! I had not planned for retirement and had thought that I could go on ‘part time’ forever – what a mistake!
The first thing I did after I retired was to travel to New South Wales for a week long workshop run by Petrea King at the Quest for Life Centre. This workshop helped me to focus on the positives in my life and assisted me in developing a life plan for whatever time I had left. Petrea is a delightful motivational speaker who has had leukaemia and she has written several books as well as developing meditation tapes. Her book Your Life Matters led me to investigate the Quest for Life Centre. You can read about Petrea at www.questforlife.com.au if you are interested. Unfortunately the Centre is a long way from my home, so I probably won’t have the opportunity to visit again, but the workshop was instrumental in giving me strength, finding peace and helping me to plan for my future.
I decided that I wanted to be part of the Velcade trial which was about to happen here in Australia and began asking my oncologist to help me. He had already started me on Thalidomide, but the reports that I was reading on the net convinced me that Velcade was a better option for me. After lengthy investigation I was included in the first Velcade trial in Melbourne. The Velcade worked wonders in bringing down my paraprotein, however after 4 months I ended up with side effects that I could not tolerate. These included an extreme headache, peripheral neuropathy in my fingers, increased spinal pain, exhaustion and an inability to eat. I ended up hospitalised for 6 weeks and was then moved to the local hospice for a further 4 weeks. My family and the medical staff felt that I was nearing the end. During this time I lost 50kg. Fortunately I was overweight before I was diagnosed with MM, so in the past three and a half years I have dropped from 140kg to 68kg! It’s ironic because I have spent a lifetime trying to lose weight and now the doctors don’t want me to lose any more and encourage me to eat any and everything I want!!
I decided that if I was dying then I did not want to be in hospice (even though they provide a fantastic service), so in August I came home. My husband Bob was fantastic and nothing was too much trouble for him. He became the chief carer, lifter, cook, cleaner, and Mr. Fix it!! Whatever I needed or wanted, he made it happen!! I couldn’t walk so we obtained a wheelchair. We made the sitting room couch my bed and I used a commode for three months. With the support of a friend who is a physiotherapist I began doing exercises in bed and very gradually I was able to regain the strength in my legs and to walk within the house. I decided to stop all chemo treatment and had radiotherapy to stop the pain in my leg. My morphine dose was increased to manage the spinal pain and I began a low dose of Endep to help with the neuropathy pain. I have recently started using a TENS machine on my hands and have found that it really does help to reduce the pain in my fingers. I am now in the process of investigating the ReBuilder concept which is getting good reviews from people on the net. I hope that we may be able to obtain one of their machines to use here in Australia. You can find them at www.rebuildermedical.com. If you know of anyone who has used this system I’d love to hear what happened, as having the neuropathy in my hands is quite debilitating.
I have learned to live each day as it comes. I know that I have approximately 2 hours of ‘active’ time on most days. During this time I attend meetings, visit friends, travel, walk, shop, etc. I have a marvellous little folding seat that my mother found for me and Bob carries it where ever we go. This allows me to sit and rest, no matter where I am – on the sidewalk, in a shop, in the park, etc. After a 5 minute rest I am able to walk again, thus extending my active time. When we get home I generally lie down for the rest of the day – usually for a sleep, then I enjoy reading, doing puzzles, writing to friends, talking on the telephone and entertaining visitors.
We have started a local cancer support group here in Bendigo. It is not Myeloma specific because there are so few people with MM, but there was a great need for a general support group. Bob and I have found this group to be a real life line for both of us. We have learned a lot from the other group members and have contributed our experiences and knowledge to them. When you live in a country town – even though Bendigo is not small and has about 100,000 people -- you are isolated from the cutting edge of information. The support group assists people to share their knowledge and strengthens everyone. I would certainly advocate that anyone dealing with MM should attend a support group in their own area.
So….that’s what I’m up to a year after retiring. I now advise people 50 years old to start thinking about what they want to do when they retire so that they won’t be caught off guard if they are forced to retire much earlier! I think it also helps to have a ‘passion’ – for anything that takes your fancy. I have met people who are interested in subjects as diverse as wolves, trains, African violets, American Indians, religions – you name it! I often envy these people for their focus and interest about their chosen subjects and wish that I had found a ‘passion’ before I was diagnosed with MM.
Living with Myeloma is a challenge, but fortunately life does go on and even if MM is ‘terminal’ it is not an immediate death sentence. Everyone tells me how ‘well I look’, yet when you meet with people with other types of cancer they often tend to appear grey. This ‘healthy look’ seems to be a part of Myeloma and I try to enhance it by spend 10-20 minutes in the sunshine each day. I don’t worry about skin cancer any more!!
May, 2007: I have been on Revlimid for 7 months now and am better than ever! I started on 50mg which was reduced to 25mg and finally to 10mg for 21 days with 7 days off. My paraprotein had reached 70 with 90% in the bone marrow, but now it is down to 13!! So far there have been no side effects and I no longer require blood transfusions every three weeks. Having gone through the long list of treatments from VAD, radiotherapy, cyclo, thalidomide, Velcade, Aredia, anti-depressants, durogesic patches, and a multitude of anti nausea and pain medications with many unpleasant side effects and nearly dying on three occasions to now where I am feeling so much better is magic!!
August, 2007: The results have been fantastic and after 11 months I feel better than I have since being diagnosed and going through all the trauma of chemo, operations, radiation, etc. Because I am allergic to Dexamethasone I take the Revlimid ‘straight’ but my paraprotein has dropped from 90 to 8 – its amazing. I have no side effects and I’m just keeping my fingers crossed that this keeps working forever!
My advice to all people who contact me about my Myeloma journey now boils down to three pieces of advice: 1. Be very careful if you have ever had bowel problems, ie: diverticulitis, IBS, etc. and get excellent medical advice BEFORE you start taking Dexamethasone. I did not think to tell my oncologist and my resulting perforated bowel problems were the result of the reaction to of large quantities of steroids on an already weakened bowel system. 2. Drink at least 2 litres of fluid – preferably water – every day, summer and winter to try to avoid kidney problems. 3. Keep your bowels moving – use prunes, dried fruit, or whatever works for you, together with over the counter products to prevent constipation. Constipation is caused by many things, but pain medication is one of the worst. By staying ‘regular’ you can avoid the additional pain caused by constipation.
Of course all the other advice provided by the Cancer Councils about nutrition, exercise, living a healthy life style are very important and taking control of your own life is essential. I now have 4-5 hours per day that I can be up and about and I plan each day's activities to make the most of all the ‘active’ hours I have, but to keep those hours I know that I have to rest/nap for up to 4 hours per day! Its not a problem really, its just that I live a different life style from most people. As a result of the Revlimid I am healthier and happier than I have been in 5 years and the future – yes, the FUTURE, looks possible!! Myeloma is such an individual cancer – what works for one person is not always the best for another, but the trick is to find something that works for YOU and go for it!!
Hopefully, the time when MM is chronic rather than terminal is not so far away. Don’t give up hope – so many people are working on finding medications that will work to stop the progression of MM and I feel that I am living proof of that progress.
September, 2008: Living with Cancer is now my motto!! It has been over a year since I last wrote and I just wanted to add that I am still on 10mg of Revlimid for 21 days each month ~~ this means that I’ve now been on it for 2 years!! My paraprotein level has been steady at 7 for the past year (remember it was 90 when I started)!! I was told that Revlimid would start to lose its efficacy after 14 months, but fortunately this has NOT been the case for me. I say a prayer each day that the Revlimid will continue to work forever!! In conjunction with the Revlimid I take 300mg of Gabapenten once a day to help combat the ‘pins and needles’ that started years ago from the Velcade, as well as one small Cardia tablet to help prevent any blood clots. On top of these, I’m still on 300mg Fentanyl patches every 48hours for pain, which holds it at bay most of the time and have also been given some top ups (Actiq) that can immediately hit pain on the head if necessary. So far so good!! I feel blessed that I have lived long enough to find Revlimid and that I have been able to obtain it from Celegene on compassionate grounds. When I say that ‘I found Revlimid’ this is the absolute truth, for I am a daily contributor to the CancerCompass message board on the net and it was here that I first heard about the drug. Revlimid has been my savior and I have felt better for these last two years than at any other time since I was first diagnosed. Now I hear that some newly diagnosed patients are being prescribed Revlimid as the first line of defense and if they are suitable then perhaps they will honestly be able to treat their Myeloma as a ‘chronic’ rather than a ‘terminal’ disease!!
I feel that my health is also strengthened by my participation in our local Cancer Support Group, and statistics show that this is true for most people. I would advise everyone to seriously consider joining their nearest cancer support group, for the interaction and support gained from others doing the same journey are well worth the effort of attending. The net has opened up even more options for me and I spend about an hour a day ‘talking’ to others on the CancerCompass Myeloma message board. This is the only opportunity for me to actually ‘compare notes’ with others who really understand MM, for it is so difficult to find people living with Myeloma -- particularly here in Australia!
When I was first diagnosed I was told that I’d be lucky to live 2 years, but here I am now going into my 6th year!! If you have to have Myeloma, now is the time to have it, for so many new innovations are occurring that one could almost say that a new drug comes on the market each year and the scientists are focused in making Myeloma a chronic disease. I don’t think taking a tablet a day for the rest of my life is too high a price to pay for having LIFE! I pray that all of the research being done around the world will make LIVING WITH CANCER a reality for us all. Cheers to you all – life is worth living – even with Multiple Myeloma!!
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