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Myeloma Stories Patient

Travelling the long road with positivity

After feeling so tired and weak over Christmas and a camping holiday I’ve decided to head off to see my doctor, with alot of coaxing from my husband. You know how you always think to yourself “oh I’m alright it will go away”. This just seemed to get worse. The “ammonia” taste in my mouth was more frequent . I knew my body was telling me something. I just couldn’t work it out. Blood tests results came in Monday. App requested by doctor first thing.

Tuesday 12th Jan 16 ” it seems my kidney function levels have plummetted” the doctor said . You can have an ultrasound this afternoon. Oh ok…. thinking is this serious? Doctor seems to be ordering alot more tests. Doppler of kidneys as well. Anyway it turns out she had been talking to Renal Clinic at Royal Brisbane Women’s Hospital and they wanted to see me ASAP.

Monday 18th Jan 2016. They admitted me straight away advising they believe it is myeloma blood cancer and I needed biopsies. Dumbfounded. Never ever expected something like this. I had to call my husband and children to let them know. Brian has only just gone through bowel cancer operation in September 2015 . We didn’t need this. Kidney biopsy booked for Tuesday 19th, blood tests every day. Hematologist doctors came Wednesday advising they won’t fully diagnose Miultiple Myeloma until bone marrow biopsy.

Friday 22nd Jan 16. I had the biopsy about 1. I reckon it was about 2:30 when Dr. Nick Weber and Dr. Scott came with the diagnosis. Yes, multiple myeloma. I was being discharged to start treatment as an out-patient which had to be approved by the government due to cost.

Friday 29th Jan 2016 I started cycle 1 SubQ Velcade along with Dexamethasone and 10 Cyclophosphamide weekly. I’ve had 2 cycles (twice weekly injections) now cycle 3 starts next week on weekly for a few cycles . Doctor will be doing a live stem cell transplant and also will be giving me bone strengthening injections. This has all happened so quickly and our medical teams prompt action I cannot fault.

I am participating in the Worlds Greatest shave on Monday 14 March and our team has raised over $10,000 for blood cancer. “A long road head of me”. … I hear those words so much. BUT I will travel that road with positivity and wonderful support from my family, friends and work mates. I will fight this!!!

—Christine B.
Queensland, Australia

Categories
Myeloma Stories

Alistair M. – Leopold, Victoria, Australia

I lived my life as a very fit 48 yo male. Always swimming, paddling and participating with my partner in sport. I started to fracture my ribs somewhat benignly in 2012. I worked as a Paramedic and the shift-work seem to mask the fatigue very well. Things progressively got worse until after many questions I was diagnosed in September 2013 with Kappa Light-Chain MM.

The drugs and the treatment caused a number of problems weight gain, fatigue, depression, loss of libido. I attempted in my first year of remission to commence a full-time job and gave up after 6 months of repeated viral infections.

I’m 51 yo now and have been taken of all the nasty medications as I go into my second year of remission. I am losing weight, I have more energy, my libido is back and I starting work again. Best of all I’m participating and enjoying my time with my kids, partner and family. Patience and don’t be too hard on yourself, you will be OK.

– Alistair

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Myeloma Stories

Brian R. – Melbourne, Australia

I will always remember that night in late October in 1996.

My wife Roslyn had been going to a string of doctors complaining of rib pains for nearly 15 months and had just about every test possible. The doctors were acting as if she was imagining the pain, but I knew it was real as we could be out having a casual walk and her hand would go across her chest. We went back to this physician we knew and Ros trusted and explained that this pain was real, not imagined. He then decided to do another set of blood tests and some x-rays. On the day Ros was having the x-rays the doctor rang me to tell Ros that he had changed her chest x-rays to a full skeletal survey and that he would see us that night. He then told us that the Calcium reading had increased and that she was to see a haematologist to get confirmation whether she had hyper-parathyroidism or myeloma.

At this stage I was working as a retail pharmacist full time and decided that there was no way I could keep on working and become a carer. I admit I was a chauvinist, I used to come home from work and dinner was on the table, dirty clothes thrown in the hamper magically appeared washed, ironed and back in my wardrobe. Well this all changed. Ros went into a very black place for a couple of years while she went through chemo, a stem cell transplant and then monthly Aredia and then Zometa for about 10 years. As everyone knows, this resulted in monthly visits to the hospital and we did not just select the nearest Hospital but one on the other side of city, usually a 45 minute trip then to find parking.

During the early time I had contacted the Cancer Council of Victoria looking for a Myeloma support group only to be told that there was nothing like this. About the same time Robert Moran had done the same after his wife Glenys was also diagnosed with myeloma. The Support group co-ordinator at the Cancer Council, Pat Dobson, brought us together at a meeting and from this the Myeloma Foundation began.

Prior to Ros’ diagnosis we had always talked that I would retire and we would travel, but now Ros does not have the confidence to travel far from home, I can get her as far away as Cairns but this is also chasing the warmth especially during Melbourne’s winter. About eight years ago she gave me “permission” to travel by myself and initially my trips took me camping in the Kimberlies, up the centre of Australia and to the top of Cape York and Thursday Island. The following year I was due to go to Israel and 7 days before I was to leave she fell on our front steps and fractured her femur, the major bone in the thigh. Thanks to insurance she had surgery and then extensive rehab to learn how to walk properly again.

Ros is keen to live and enjoy her life now she has achieved her wish she made when she was diagnosed: to see both our children married and to have grandchildren. We now have six beautiful grandchildren who are the best medicine you can have. Helping with them, doing folk dancing upto four times a week and still working two days a week keeps Ros pretty busy.

As I am writing this I am remembering all sorts of things that happened along the way as this has been a real journey. We have learnt a lot about ourselves, our relationship and about our friends and so called friends. We have met a lot of fabulous new friends and we have grown through this process. We have different values now and often discuss how many of our friends have no idea of what Ros has been through or where she is at now. I could write a book about our experiences and the people we have met along the way.

Thankfully, Ros has not had any myeloma treatments since her transplant and though has a few other unrelated problems, is in pretty good health now but we still regularly visit her haematologist about every four or so months. Thinking back to 18 years ago there was very little in the way of treatments available and the prognosis was very poor. Now there are three major new products currently available and there are a number more being trialled and look like they will add to the arsenal of treatments available to our doctors.

I am now heading off to Scandinavia and Ireland next week with my sister. This is the fourth trip I have now done with her into different regions China, Cuba and Morocco. I am starting to get excited about this venture.

I know Ros will be fine as our daughter lives next door and I am on a promise to phone home every day. Thanks to Facetime, wifi and Iphones.

– Brian R.

Categories
Myeloma Stories

Jenny C. – Sydney, Australia

I was diagnosed with multiple myeloma in April 2012 from an irregularity with a blood test. In October 2012 I had my first symptom with a fracture in my T5. I then started on a clinical trial with prednisone , velcade oral chemotherapy. I had a successful transplant in February 2013 and it has taken me a full year to recover and to feel like my old self.

I am in complete remission and hope it will last for a long time. I couldn’t have gone through this without my family support, I’m lucky.

 — Jenny