UK CLL Forum, UKCLLFORUM

Patient Profile for: Eileen Rising



General
Mutational Status
Positive Prognostic Markers
Neutral Prognostic
Markers
Negative Prognostic
Markers
Chromosomes
Clinical Presentation
Drug Allergies

DOB: 1942
Female

       

 


 


General

Here is my cancer history but also something about my experience with integrated medicine.

I was diagnosed with NHL (Non Hodgkins Lymphoma) in 2001 at the age of 59, as I was coming to the end of a long career. I had been in a stressful job for several years and for the last three had struggled, for the first time in that long career, with a bullying manager. I had not felt physically unwell, but when I went for an insurance medical the doctor thought he felt something in my abdomen. A few weeks later, I went to my GP about stress and at the end of the consultation, as a "by the way" I mentioned what the other doctor had said! Before I knew it I was in hospital for tests and indolent NHL, Stage 4 was diagnosed - it was above and below the diaphragm and in the bone marrow, as well as a large mass in my abdomen. I was treated with chlorambucil, then regular check ups, diminishing to 6-monthly.

I took early retirement on health grounds and we moved to another part of the country. 18 months had passed since treatment and my new consultant organised a scan, since previous scans had not accompanied my NHS records! He prescribed another course of chlorambucil. This gained another remission of about 2 years. I then had RCOP (Retuximab + others) and had stem cells harvested in case my condition transformed into the aggressive version of NHL. This gave me 4+ years of remission until the NHL transformed into CLL, the two conditions being very similar. My lymphocyte count moved up from 8 to around 60 in a relatively short space of time and my consultant recommended FCR earlier this year. However, the PCT could/would not pay for retuximab and my health insurance apparently would not cover the retuximab, since I had had it previously - small print which we had not understood or had escaped our notice when our original insurance company had been taken over by another! The cost of retuximab was too great for us and so I am now nearly half way through a programme of FC, without the R, having had a blood transfusion near the beginning. So far it seems to be going well, my lymphocyte count has already dropped to 2.7 and platelets at 151 are just within the normal range. The scan after the next course will show how well. I now have much more energy than before the blood transfusion, although technically I am still a bit anaemic. Throughout all of this I have never really felt ill - only increasing tiredness as the CLL developed.

In 2004/5 I went to a talk by a guy called Chris Woollams, who had lost his daughter to cancer. He graduated from Cambridge with a good degree in, I think, microbiology, but his career had taken a different path. However, he has used his knowledge and research skill to scour objectively worldwide research on all kinds of cancer and to set up a charity to bring the results of this to the public. His talk was inspiring. I have posted details of the charity's website under "integrated, alternative and complementary medicine". As a result of this talk, my husband and I have changed the dietary aspect of our lifestyle very considerably - and it has not been as hard as we thought it might be. We eat no dairy produce (giving up cheese was the hardest!), avoid caffeine and sugar (although the latter not quite entirely, I must admit) and I drink green tea by the mugfull. We also rent a water ioniser, which removes the nasties from tap water, producing water which helps to keep the acid/alkaline balance in the body more alkaline than acidic - a result unfavourable to cancer. I attend the Dove Clinic for Integrated Medicine in Winchester, where the focus is on supporting and boosting my immune system. This is done with the knowledge and support of my medical consultant.

My husband and I are both convinced that these things have contributed greatly to my ongoing health and quality of life. That seems a strange thing to say when you have cancer, but actually doing something about it is enormously helpful in staying positive, never mind the (I believe) beneficial effects of the supplements I take along with our (now routine) eating habits. I keep my mind busy with local and family history research, have some involvement in village activities, go on beach fishing expeditions (when weather is favourable) with my husband (he fishes, I read!) and spend much time keeping in touch with our 4 adult children and 11 grandchildren, seeing them as often as distance and other things allow.

This is rather long, but I hope that others will, if they haven't already, look at the CANCERactive website and find something which is positive and helpful for them. Best wishes to all - and stay positive. Ann