Has anyone here successfully treated Diffuse Large B Cell lymphoma using CVP-R, minus the Vincristine?

My mother had one round of CHOP-R, but it affected her heart so adversely the doctor won't administer it anymore as he is afraid she might not survive through it. (So, she will continue with CVP-R, minus the Vincristine.) As a result he says we are no longer treating to cure, but to relieve symptoms and get "another good year or two". I'm wondering if anyone else has had a similar experience, and whether we can expect any better than a couple more years following this course?

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  • Hi there . I feel very sorry for your mother but do not understand the consultant. Ten years ago I developed a lump in my neck which turned out to be Large Diffuse B Cell Lymphoma. It had taken nearly 6 months to diagnose and during tests at my local hospital I received results of 'yes' you have 'no you haven't cancer' and eventually (100% lucky for me I got sent to London to the Hosp for tropical diseases as it was thought I had picked up something on my many travels) after many tests I was told it was not a tropical disease. I was referred to Professor Linch - he is the top authority on Lymphomas in the UK. He is a wonderful, caring man and within 48 hours and after only looking at slides he said that it was indeed Lymphoma. When asked if I wanted to be treated locally or at UCH there was no contest and despite the travel I stayed there for my treatment. I was given 8 sessions of Chop-R. Luckily I did not suffer the usual sickness etc. but just awful tasting food and the most annoying one was the ability to walk after about the 5 session. My walking got worse and worse, going upstairs or hills it felt as though my knees were going to break. At the end of my treatment, Prof. Linch that there was no sign of the Lymphoma and sent me to another specialist regarding my walking and now my balance. This man said it was the Vintristin and probably my walking and balance was as good as it would get. I know it was a small price to pay for still being alive but I could not stand the thought of having to taking someone with me everytime I wanted to go anywhere and continually being out of breath from anything strenuous. It was due I was told to now having Perphiral Neuropathy. I then got taken to a pool each day to exercise my legs and a year later I was able to walk and drive again unaided. My breathing had also improved. Six years later another lump appeared and the Lymphoma was back but this time Low Grade. When I asked Prof Linch why this was as High Grade cannot then become Low Grade it is the other way around he said that probably I had had Low Grade at the very beginning and had lived with it, unknown, for several years before it turned to High Grade and was then picked up. This was why it probably took so long to diagnose. I was again given 6 sessions of Chop-R without the Vintristin but Fludarabin instead, followed by another two years (3 hrs every 3/4 months) of Rituximab maintenance. That finished at the end of last November. I am now seen regularly, every six months again until it possibly returns. Everyone knows High Grade is curable but Low Grade is not and the length of time before it re-appears is anyone's guess. I asked about the next treatment when it returns and have been told that another drug - I think it is called Benzamustin (or something like that) will probably be used. Why is your Consultant being so negative? The Peripheral Neurophathy still causes my knees to be painful, although there is no arthritus, with stairs and bending down but ------ hey I am still alive and kicking! Where do you live? Can you not change to University College Hosp. London? Never accept what you can't. I always ask 'why' and what are the outcomes and alternatives. Remember, your body is the most precious thing you own, you are letting them practice on it as medicine is not an exact science. So, go elsewhere and fight, afterall you only have one life! Love and best of luck to you. Belle

  • Hi Sorry I forgot to tell you the Vintristin also naffed out my nervous system so my heart beat was very irregular and quite frightening at times. I now have to take Flecainide Acetate 3 times a day and it is 99% fine...... Belle

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