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Ian Williams

 

1947 / Class of '01 / Type IgG / Died 1-13-02

Submitted by Diane Williams (diane@windsorantiques.com).

My husband, Ian A. Williams, passed away January 13, 2002 from infection due to Multiple Myeloma (IgG). He was 55 years old, had been diagnosed for 6 months since July 2001. My husband was raised in a small town in England and we were married 34 years. Looking back we realized he had been getting sick since about January 2000. Previously was in good health, hardly went to a doctor, never was in hospital, in fact my husband was not well prepared to deal with illness at all. In July 2001 he went to the doctor with nose bleeds, hoarseness and rib pain, first allergies were suggested, then nothing was suggested but painkillers given, then I urged at the third attempt that he ask for a blood test. He was called to the Emergency Room the same day as his blood test. He was in renal failure, I would recognize the unnatural looking increase in weight around his waist as a sign of renal failure now but a weight gain didn't seem to signify very much then, and he seemed to have a lot more problem with nose bleeds and tiredness.

Within 3 days he was diagnosed with MM and within 4 days was on VAD protocol of chemo. It was stopped for 12 hours while they ascertained if his port was infected (it wasn't) then restarted. His IgG level fell from 7,250 to 6,000 after first go of chemo. Still needed plasmapheresis on Day 13 of hospitalization because his energy levels were not getting back up, this procedure transformed him. He developed really bad mouth and throat infections with the first chemo lasted 2 weeks, was in real difficulty. Came home after 16 days in hospital. Took 2 more rounds of VAD chemo at our doctor's office, had epi shots each week. No difference to IGG level after 2nd chemo and a rise to 7,500 after third chemo. On 1st October when we learned of rise in IGG, this was a black day. Up to this point my husband had believed that he was going to be cured, we had a doctor who was overly optimistic never gave him the full news on his disease and my husband was always a very optimistic person too. I had wanted second opinion from the start but my husband declined until 1st October. Appointment made with Stanford Medical Center and on November 12 a new chemo regimen was started with Cytoxan over 4 days. Carried out at our doctor's office. November 19 was hospitalized with neutropenia, in hospital for 8 days. Neupogen was not given until 3 days after chemo when he reached the hospital. IGG level fell by 1,600 (it had reached 10,250 just before start of Cytoxan). Another round of Cytoxan given in December finishing on 17th, only 3 days this time and with neupogen given immediately for 10 days. Appeared to withstand this better. Developed plasmacytomas on his head and had radiation which helped but did not get rid of them completely. Weight dropping because of difficulty swallowing, my husband never found it easy to eat after his major throat problem from first chemo but it gradually got worse and worse. Multiple blood transfusions during this last 6 weeks. After second Cytoxan IGG was rising again, so Thalidomide was the drug of choice and started on 26th December. After 11 days of Thalidomide with last 3 days of vomiting and great difficulty in getting medication down, we decided to stop and just concentrate on getting some nourishment and liquid into him. By January 7th he was seriously dehydrated, one tumor on his skull was interfering with his eye, and I went to see the doctor on my own on 8th January. Offered to take him into hospital on 9th and insert a peg into the stomach for feeding. My husband was pleased to be doing something, I specifically asked him was he sure and he said yes. I had asked doctor if he had weeks to live and he agreed. 9th January he was hydrated in hospital and 10th January had the peg inserted, 11th January he developed an infection and died 13th January.

I do not feel anyone ever really told him the real scoop with this disease, considering the aggressive of his particular disease I think treatment options should have included treatment about what quality of life he wanted. I knew what he was dealing with because of the internet resource and during the last few days I discussed the reality of his situation with him but he replied he was just hoping for a miracle. I think what I have learned from this disease is if you are going to get a second opinion get it immediately; you need to ask very direct questions to get all the answers otherwise you won't be told; and discuss at length what possible benefit any treatment might realistically bring. I am sure nothing would have changed the outcome of my husband's very aggressive disease but I do wish I had been alerted back last August that that was as fit and strong as he might ever be, we could have taken a few days holiday then but we deferred it - so it never happened and I would have given up my work right then instead of later.

My husband donated his whole body to Stanford Medical Center for research and all donations went to Myeloma research. More effective treatments do seem to be on the horizon and I hope a real cure may soon be found so that other families do not have to endure watching a loved one in such difficulty. 

 

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