Devonport, Tasmania; firstname.lastname@example.org
6-15-1945 / Class of '96 / Type: Plasmacytomas / Updated: 5/17
My name is Sandra Smith. I live in Tasmania which is a State of Australia. It is a small island that lies of the southern coast of the mainland, next stop Antarctica.
I live in Devonport which is situated on the north west coast. My home has large windows along the front and they all face out across Bass Strait and so I am flooded with sunlight from the north which is the best position to be in down under. I am a school teacher. At 52 yrs of age I have been teaching for 32 years in a variety of situations ranging from the teaching of Adult Migrants through to Early Childhood and infant classes where I am teaching at present in a small three teacher country school. My husband, Adrian used to teach also but gave it away a few years ago to take up Pest Control with his brother. (swapping one lot of pests for another, so he says) While we both taught we managed to move around from Australia, to Papua New Guinea (one of the world's last frontiers) to Vanuatu (of James Mitchener fame) to the Northern Territory of Australia (as in Crocodile Dundee) through other mainland states and finally home to the state of my husband's childhood, Tasmania. I grew up in N.Z. and left there to come to Australia as a 17 year old. I go back frequently but have never lived there since the early 1960s.
I grew up in an orcharding and grapegrowing area. There would have been a lot of sprays on the air. I have always been well and strong and have had very few sick days in my working life. I have always been very allergic to insect bites however and got a severe reaction to a paper wasp sting in the tropics which I thought would take my life.
I had glandular fever when I was about 12 yo. Apart from that my surgical adventures did not start until after I had my two children and all of them related to the plumbing problems many women are forced to deal with in life. (e.g. hysterectomy, cystectomies, cystitis etc.) the latter problem was ongoing and involved LOTS of strong antibiotics.)
About 8 years ago (1989) I noticed that I was having a lot of trouble with a blocked tear duct. I put up with it until I got sick of it and in 1993 I went in to have it repaired. The Doctor seemed not to worry about why it was happening, he just repaired it.
Three years later (1996) I noticed the lump was back in the same place. However, this time when I pressed it, nothing came out of the tear duct. The lump didn't hurt but was growing a little bigger over time and I decided I should go back to the eye Dr to have it looked at again. The original Dr had retired so a new Dr looked at it briefly and sent me of for a CAT scan. The result of that was the following: Mass lesion with bone erosion in left inferior medial aspect of left orbit, quite suspicious of tumour mass. 18/10/96.
I was then sent to an ENT specialist who wanted to operate immediately but I was anxious for a second opinion and organised through my GP and a Dr friend, in Sydney, to fly to there and consult an ENT specialist. In the meantime, I had an MRI scan and that said the following -
Signal characteristics suggest that the lesion is solid rather than cystic. CT and MRI features favour a benign process? granulomatous lesion however, malignancy is not excluded and histological evaluation should be considered.
So, due to the fact I had a solid mass measuring about 1.5 cm between the nasal septum and left eyeball and that bone erosion involving the inferior aspect of left anterior ethymoid sinus, medial inferior wall of left orbit and left side of nasal bone was evident and that the mass was noted protruding into the left orbit, I was told I should present myself for a biopsy. I did this on January 30th, 1997 at the Royal Prince Alfred Hospital in Sydney. I notice now that Doctor Joshua is based there but at this time, of course, I had not heard of him, nor of MM and was hoping for something far less sinister to be the cause of my troubles.
However, that was not to be. They operated on the side of my nose, they excised the tumour, sent it off for examination and the result was that I was told I had a solitary plasmacytoma. At that time my Doctor friend sent me the address of the Multiple Myeloma Foundation to which I wrote immediately and found all of you lovely people out there in the ether who were JUST SO IMPORTANT and PRECIOUS to me at that time because you all KNEW how I was feeling and you also had heaps of good advice and encouragement and were so bravely baring up under the burden of your own situations.
I was referred to an oncologist here in Tasmania. He is not an MM specialist and as far as I know there isn't one anywhere but in Sydney. (two hours expensive flying time from here) He referred me on to a radiologist / oncologist who put me on a waiting list for 25 lots of radiation. I had to wait till the week after Easter '97 to complete my treatments. I lived away from home through the week because it was too far to drive back and forth every day and I didn't want to bug people to take me.
I have spent all the time since the treatment finished trying to claw my way back to normalcy. I found the treatment far more upsetting than I expected. Apart from what it did to the skin on my face, the way my eyes swelled, my eyebrows half disappeared, two great blocks of hair were blasted off the back of my head, the skin fell off my nose in great hunks, the internal environment of my nose became raw and bleeding and my sinuses all blocked up, I found I couldn't stand the smell of the environment, I couldn't bear the taste of food, made myself eat fruit, soups and vegetable stews for health reasons but even those left me feeling unwell. I never actually vomited but felt nauseous all the time. The psychological warfare of attending the radiation clinic in a public hospital and being a blue card carrying member of the cancer club/cattle call was horrendous. There was no psychological support offered. The radiologists were run off their feet and made cursory enquiries as to one's health (but had no time to listen to answers) the weekly visit to the Dr who was overworked and harassed looking, didn't invite one to open up so the feelings of loneliness, fear, isolation, panic, anger, etc were never really given a chance to be aired and worked through. I felt so sorry to all the elderly and inarticulate and non assertive fellow sufferers who sat on the yellow vinyl chairs with me, isolated in their cocoon of suffering, who didn't have access to chatting to all of you on the internet once a week, at that time like I did. I will write a paper to the board of directors who run that particular unit as my gift to those who come behind. Possibly they will see their way clear to offer some sort of counseling support once a week for people???????
Sorry, I got sidetracked. Here in Australia we don't get access to our paper work.
I haven't tested the system yet by kicking up a fuss. We do have a Freedom of Information Act, but it seems it doesn't include Doctors??? At this point I am now waiting to go back to the oncologist and find out Where to now? My blood, urine, bone marrow, skeletal survey revealed nothing before the treatment. What will happen when I'm tested again I don't know but will keep the list posted.
August 22, 2000: So far so good? I think! With every subsequent blood and urine test coming up clear I began to relax. I went and had a bone-marrow harvest in the Royal Hobart Hospital in July 1998. After that I attended a IMF Patient and Dr. Seminar in Sydney in October, 1999. It was great to meet up with people who were just names or photos in the IMF Magazine.
As a result of that visit I felt that I would like to make contact with the Haematologist/Oncologist in Hobart for a chat about 'Where to from here?" I had to ask my G.P. for a referral. All I got for my pains was a lecture about how I should let go of the past and live for today and for the future. If I got any further symptoms I would be for the 'high jump' so why would I want to find out anything else. Apart from that, in his opinion I would die of a heart attack before ever I died of Myeloma, due to the fact that I have hypertension and am overweight!!!!
I felt somewhat devastated by this unexpectedly vehement attack and determined to rid myself of his services. However, we have MM History which I can't bear to go over with anyone else and it is TRUE I will probably die of a heart attack so I have to confess that as of the year 2000 I have adopted a head-in-the-sand attitude and am madly traveling and having a wonderful time (which includes eating) and will try not to think about reoccurrences until such time as I am forced to.
April, 2004: Time has passed and I am still here. Whoopee! As far as I know all is well. Nobody (Medical) is interested in doing any updates, and frankly I am too frightened to find out anything. I seem to be OK. The solitary plasmacytoma site seems to be the same, still, although it is also close to the place where I had trouble with a blocked tear duct over the years and that seems to be acting up again slightly. If it gets a lot worse I will go and have it seen to again but at the moment I am happy to let sleeping dogs lie.
Jan, 2009: Original site for for intital plasmacytoma now causing enough concern for me to be back visiting the E.N.T. specialist. Having CAT scans and thinking about where to go to get more information and work out where to go from here. It has been 11 years since diagnosis.
Feb, 2009: Off to Sydney March 18, another biopsy in same site as before. Awaiting blood results etc.
April, 2009: I have been to Sydney, I had a bone marrow aspiration, blood work, a full skeletal survey and a biopsy up the nose. It appears that the plasmacytoma has reappeared in the left ethmoid sinus as it was before. I go back to the R.P.A. on May 8th to have it removed. As the skin in that area is compromised from two previous surgeries and 25 lots of radiation I will need a skin graft so a plastic surgeon will be present as well. What the follow up is going to be, I donít know. I appears I cannot have any more radiation in the same place.
Dec, 2009: I had a biopsy in Sydney in March at the RPA, removal of new tumour in the same place, after 11 years. This time the hole was bigger so had a plastic surgeon to do a skin flap from my forehead down to my nose. Have been told they cannot radiate in the same place again so at this point am in a sort of limbo. Have just done new bloods and a 24 hr urine. Having MRI of face and spine in Jan 2010 and a PET scan. Have found a haematologist to oversee my case. I was falling through the cracks with nobody really following up apart from being asked to come back in 6 months for an MRI.
July, 2010: Just back from an MRI of tumor site. Hematologist says there is no movement so don't need to go back for 12 months. He still wants blood every 6 months to keep an eye out for protein spikes. As far as I know there has never been a sign of abnormal protein. I feel content that I am in good hands.
September, 2011: This year I have had another tumour removed from my eye socket. I had a lump under my jaw and I asked for it to be biopsied. It has proved to be a related tumour and this time there is lymph node involvement. Oral chemo and thalidomide have been suggested.
December, 2011: In June I had another tumour removed from the bone of my eye socket near my nose. It necessitated a skin graft, skin taken from near my ear. They also found MM involvement in a lump under my jaw, near my ear. After all the scans, BM biopsies, blood tests etc I have been on oral Chemo, Dex and Thalidomide. I have completed two months with two to go before an MRI can ascertain whether other tumours have shrunk and I can just have some sort of maintenance regimen.
December, 2013: Still going strong, have been off oral Chemo for a year (cyclophosphamide, Dex, thalidomide). Peripheral neuropathy as annoying side effect, but apart from that, all is well. Bloods every 3 months. MRI, visit to ENT specialist coming up in March next year. Suspicious things may be afoot again?? Always waiting for the other shoe to drop but thankful to still be here.
April 24th, 2014: Back into hospital for Septoplasty, bilateral intranasal antrostomiesx2 bilateral trim turbinates x2 , bilateral functional ethmoid sinus surgery x2 I have some sort of swelling in my left nostril, cannot breathe in and out of it so this is supposed to sort that out??? Tissue to go to pathology???? Hoping for a good result, Otherwise am feeling fine.
June 10th, 2015: Had to commence course of oral chemo in September last year. Cyclophosphamide and Dexamethasone. Been troubled with side effects, swelling, weight gain, insomnia, shortness of breath, tiredness, weakness etc. Havenít managed the side effects as well this time as last time. I had a tumour in the upper maxilla. I am hoping to come off it in August. My body needs a break. The bloods seem to indicate that healing has taken place. The tumours seem to be popping up with less time in between. However, I turn 70 in 5 days so I am grateful to still be alive
May 21st, 2017: Tumours arisen in roof of mouth through to base of nose bones. Back on Cyclo. Dex and Revlimid. Finding Rev. the hardest to take so far. After nearly 6 months of it Dr dialing back Dex from 5 tabs to 3 and letting me off all Meds after week 3 of Rev for the weeks break. Hair falling out, more, this time. Age almost 72, now. Grateful to be still here.
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