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From:� "Sandra Landels" <[EMAIL PROTECTED]>
Date:� Thu�Jan�29,�2004� 10:32 am
Subject:� cml journey
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Hello everyone. Well you asked, so here goes:-
Firstly some background
Born July 1947 at Hayes Middlesex (this was the name for a large chunk of London until end of 1947 when it reverted back to the 3rd. smallest English County and London became London.....read what you will into it!)
Ended up inCambridge, via Bristol, in the early 1950's.
Had asthma from early infancy.
When I was 18yrs. old I started 3 yr. training to Register as a Nurse for People with Severe LearningDifficulties (today's terminology the qualification R.N.M.S) in a hospital just outside Bedford.
I worked a Matron of a Prep school, near Basingstoke for a couple of years. Then returned to Bedford� as a Clinical Nurse Teacher.
1976 I returned to Cambridge and worked at a local Hospital ( my Mother's health was deteriorating). 1979 I returned to teaching Student Nurses at Nurse Ed. Dept.- a joint dept with Psychiatric teachers as well.
1980 I was leading a small tutorial group, in a small room. At the end, one of the students asked me why I hadn't acknowledged her input. This stunned me. She had been sitting in the chair on my right side. The hearing in my right ear had gone.
Usual tests at Addenbrooke's hosp. to find cause. First doc ignored the fact that my Mother had lost her hearing at a similar age. He decided it was glue ear and puctured the ear drum. The next one I saw offered a stapedectomy to remove theovergrown tissue and put a plastic stapes in. Should have taken 2hours - actually took 4 1/2 hours and was unsuccessful.
Late 1980''s developed Rheumatoid Arthritis - again inherited from my mother. Went through an increasingly bizarre series of treatment from one Rheumatologist at Addenbrooke's. Suffice to say, that by 1993 the drug I was on (at one third higher dose than the max. dose - excuse they were doing that in USA) had to include a blood test every 3 months. As I was not sure that I would receive the results from that specialist, my bllod was taken by my GP. She was alarmed, in November 1993 by my high Basophil count.
All attempts to contact the Consultant failed. She took another sample in January 1998. She rang me a few days later, to ask if I would be willing to speak to Dr. Green from Addenbrooke's by phone. I agreed . He explained that the counts might be CML, would I see him a couple of days later in outpatients. On Jan 19th I had a BMB performed as well as blood tests. They proved positive for CML.
I went onto Hydroxyurea. We frequently discussed options. I was persuaded to try Interferon at a low dose. Well, that was fun, not least because I proved allergic to it! In Feb 1998 I had a tarry stool. The Rheumatologist emphatically denied that it could be the RA meds. Tony Green and I looke it up independantly. Before we met up again, the Rheuamatologist told me that the binding agent of the drug caused the bleed. It was a one to one situation and I knew he wouldn,t admit to saying it to anyone else. But Ton Green and myself found the evidence hidden away in an article from the US. Naturally, I stopped the drug. Fortunately Hydroxyurea was helping to ease the RA.
My sister's tissue type was not compatible. So we discussed, at great lenght, the idea of an autologous BMT.
I went in for a harvest from the hip.Then Nov. 1998 I went in for the aBMT. This was successful. Unfortunately, I develope a staph. infection, but it cleared up quickly. The origin could have been at home or hosp. At home, the house was being re-roofed, re-clad, etc. (it was a council house so the landlord decided dates etc.) and my mother was confused about everything going on!! Before the counts fell too low, I was able to go home for a day or two at a time.
The result - 100% PH-.
After a allergy test, I went back onto Interferon with anti-allergy meds. I also had a pulmonary embolism at that stage. Well, the Interferon's effects were such that I had to come off it once and for all. I had two good years before the CML started to show again.
The CML's re-emergence was controlled, until late�1999, with Hydroxyurea. By then I had read, on this list, about STI 571 (Glivec) Trials. I talked it through with Tony Green, by then Prof., and, with his blessing, contacted Prof. John Goldman at The Hammersmith Hospital. He agrred to see me in Feb. 2000....Novartis closed the Trials in Jan. 2000.
Meanwhile, my platelets were out of control so I started Anagrelide. This worked reasonably well.
July�2000 my counts were becoming out of control and my spleen, for the first time, enlarged. Hammersmith were starting an accelerated trial. Tony Green referred me straight away. My blast counts, after much searching, were 8, so I wasn't in accelerated phase. However, Eduardo Olivarria at Hammersmith, agreed that I should be accepted for GLivec on the basis of my spleenomegaly.
So, Sept. 2000 I started 800mgms of Glivec a day. Within 3 months, my spleen, officially measured as 28+++cms. in Sept.2000, was undetectable. The BMB was 95%PH+.
Then the really awlful stage started. The RA which had been controlled whilst on Hydroxyurea, was back with a vengeance. It really was unbearable. I saw a different Rheuamatologist and we went through all the options available - not a lot!! We discussed Celecoxib and IMI Depot Prednisolone. He discussed this with Tony Green as well.
This proved to be the best treatment I have had for RA.
Once the Trial was closed, by Novartis, we discussed the best way to both help the CML and RA. Between us, Tony Green and I agreed the dosage. 600mgm. Glivec a day. 1Gramme of Hydroxyurea x 3 days a week and 500mgms x 4 days a week.
The painkillers remained the same that had been prescribed by my GP. We had sat down� and looked at every painkiller/antiflammatory drug available. I am allergic to aspirin and paracetomol was out�- ineffective, following the first Rheuamatologist's treatments, let alone its interaction with Glivec.
Unfortunately, the joints flare up every so often. The combination of the meds. creates breathlessness over and above the asthma. This restricts my ability to be very active. But I am alive and kicking. Who knows what lies ahead as the next treatment for CML?
Take care
Sandra� Cambridge� UK
�
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