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mapesuma's Recent CancerCompass Activity

  • mapesuma has created a new message board discussion

    Has anyone got any info on the new T cell therapy? My hubby has myeloma and has read about it. We are in the uk and i believe that trials here are just starting. sue

    September 10, 2018 view discussion
    • mapesuma has created a new message board discussion

      My husband was diagnosed with myeloma just before Christmas and is being treated with VCR, Velcade, Cyclophosphamide and Dexamethasone, plus a pile of support drugs. He is coping well with most of it, except for the peripheral neuropathy which seems to be a common side effect of the Velcade, which he has been having twice a week as a sub cut injection, for 2 weeks as cycle 1. He has had his week off and is about to ...

      January 23, 2016 view discussion
      • mapesuma has replied to a post on the message board

        Hi. I had my surgery in August 2008. I can eat just about anything now, though small quantities which I don't think will ever change. I rarely dump any more but if I do it is usually related to sugar or coffee, especially if I eat them together. The further you get from surgery the easier it gets. As far as wind is concerned I found it helped to only eat sitting at a table. Sit up very straight, but relaxed, so...

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        • mapesuma has replied to a post on the message board

          Thanks Aoife, You are the only one I have heard of except for myself. It is nice to be drug-free, but as you say, sometimes I wonder if it is the best thing. I don't suppose it is possible to be free of questions. I think you are amazing to have two children after the surgery. I have done far more after surgery than I ever expected to when I decided to go ahead but it is all nothing compared to you. Many happ...

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          • mapesuma has replied to a post on the message board

            I think that maybe your age and the fact that they did not do a biopsy probably indicate that there is not a serious issue at the moment. However there is obviously the beginings of something going on so grasp this as an opportunity to sort it out before it gets more serious. Stress can give you a lump in your throat that seems completely real - mine does anyway. I don't understand the American health system, but ge...

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            • mapesuma has replied to a post on the message board

              Hi Denhux, I had my surgery in August 2008. What you describe is what I had, what just about everyone gets. The early days are dreadful. I think they don't tell the full story because they desperately want us to go through with the op because that if the best path for beating the cancer. As time goes on it gets better and better. Its slow. There is no point in expecting it to go rapidly. It goes at its own pace, di...

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              • mapesuma has replied to a post on the message board

                Thank you for replying. Everyone I have spoken to has been put back on some drug or other. Having spent all my life avoiding drugs whenever I can I was just relieved to be totally drug free after the op. I have never queried it, I think to avoid triggering them to prescribe it. However I think this may be the wrong thinking and I will ask next doc visit. Hope all is well with you. I really can't complain - my reco...

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                • mapesuma has replied to a post on the message board

                  Hi Linda, Mine was a stage 1 adenocarcinoma and I had the op in August 2008. Everyone is right . it is slow - much slower than the docs say. but it does get better. I am still improving and have a very good life now - 2 months ago we went on a transatlantic flight to antigua for our 40th wedding anniversary. Just after the op I thought i would never holiday again. The whole slow journey is really worthwhile. I am n...

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                  • mapesuma has replied to a post on the message board

                    Hope that things are good with you. I often think of you and Pat, along with many others on the board, even though I rarely visit now. Best wishes for peace and happiness, Sue

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                    • mapesuma has created a new message board discussion

                      Before my op 4 years ago I was taking Nexium to reduce acid production. This has never been restarted, and even though I do not get much reflux as serious as stuff coming right back up into my mouth, I do, nearly all the time, have a stinging burny sensation. At first it was only in my throat but now it is the whole mouth. I have also started to have trouble with my teeth. Does anyone know what proportion of people ...

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                      About mapesuma

                      Survivor
                      Esophageal Cancer
                      Cancer Nutrition, Clinical Trials and Research, Diet, Emotional Support, Genetics, Lifestyle, Massage Therapy, Naturopathic Medicine, Prevention Tips, Recipes, Spiritual Support, Surgery, After Treatment

                      I am 60, married with 1 daughter of 23, (20 when I was diagnosed) I was diagnosed with Stage 1 oesophageal cancer in May 2008. I live in Swansea, South Wales, UK and was offered open surgery in my local hospital. However after doing some research I had a MIO (minimally invasive oesophagectomy) in Exter in August 2008. I am now 2 years,8 months post op and mostly doing well. Still some problems, but nothing serious. Getting back to normal and enjoying life.

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