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Introduction Our Story Surgery Options Management Links Update Making Contact
Treatment and Update Summary ***News***
  • 87/8 - Original treatment for endometrial cancer consisting of some chemotherapy and about 40 sessions of radiotherapy to the pelvis, both front and back.
  • 95 - Codeine Phosphate to help "rapid transit".
  • ~99 - Dextromoramide, a powerful opioid analgesic for pain relief during blockage attacks.
  • 2001 - Referral to a gastroenterologist with a special interest in damage from radiotherapy. Tried antibiotics as bugs in gut can be factor.
  • Feb 02 - Started trial of Pentoxifylline (PTX) + alpha-tocopherol (vit-E).
  • July 02 - Hospitalised with series of pain and vomiting (blockage) attacks. Treated conservatively with IV hydration, morphine and gastric nasal tube.
  • Feb 03 - Reported improvement to gastroenterologist since PTX + vit-E. Blood tests during above visit revealed deficiency of vitamin B12,
    common in bowel injuries. Regular intramuscular injections have normalised levels effectively and will continue for life.
  • Aug 03 - Fewer attacks since February visit! Recommended PTX + vit-E continues.
  • Feb 04 - Continue with PTX + vit-E.
  • Sept 04 - General improvement sustained. Long term effects of Vit-E at high doses unknown so stopped vit-E, continue PTX.
  • Feb 05 - No overall change so stopping vit-E had no effect. The PTX + vit-E appears to have reduced the impact of attacks.
  • Oct 05 - Dextromoramide now unavailable. Subligual Temgesic tried to no effect.
  • Dec 05 - Continue PTX.
  • Dec 05 - A skin lesion, thought to be Bowens disease, has been developing on Jan's back on the periphery of the irradiated area.
    Her oncologist thought now best to have it removed and examined, so referred to plastic surgeons.
  • 23 Dec 05 - 8 Jan 06 - series of attacks ending in hospital admission for re-hydration.
  • April 06 - Skin lesion removed without need of difficult operation. Was actually a basal cell carcinoma.
  • Dec 06 - Gastroenterologist visit - reported overall deterioration. More attacks, more with vomiting. Continue PTX.
  • June 07 - Gastroenterologist visit - noted Janice had been relatively free from attacks following antibiotics for a severe asthma attack.
    Thought worthwhile trying antibiotics for 5 days every month as prophylactic. These upset her so abandoned.
    He also suggested Fentanyl in lollipop lozenge form (Actiq) for pain. Not effective.
  • Oct 07 - Original Oncologist Janice sees every year. Found iron low and recommended supplements. Saw GP who thought likely to do with
    limited dietary intake and absorption due to damage. Ferrous Sulphate prescribed.
  • Dec 07 - Gastroenterologist visit - reported 22 attacks in just over year. He had been informed about iron levels.
  • Jan 08 - Saw Oncologist due to back pain. X-rays and CT scan all OK. Ferritin (iron) levels only rose slightly into normal range. GP prescribed Tramadol for pain before seeing Oncologist.
  • June 08 - Attended the first meeting for patients with Pelvic Radiation Disease at the Royal Marsden Hospital in London.
  • July 08 - Saw Gastroenterologist. 12 attacks in 7 months. No anaemia even though Ferritin levels still low.
  • Aug 08 - Saw dietician who put Janice on some multivitamin tablets. These upset her so abandoned.
  • Sept 08 - Saw Oncologist again. Back pain and right leg weakness investigated but OK on X-ray and MRI, neither explained. Referred to rheumatologist.
  • Jan 09 - Pain/vomiting attack late Dec 08, repeated three times throughout Jan 09. Well enough between to see Gastroenterologist and Dietician.
    Told of report from Dr Delanian who used Clodronate with PTX and Vit-E. Dietician prescribed juice style vitamin drinks called Ensure Plus Juce.
  • Feb/March/April 09 - Saw Rheumatologist who saw earlier MRI. Leg weakness confirmed on examination and nerve conduction tests.
    Physiotherapy helping with improving strength.
  • Oct 09 - 12 pain (blockage) attacks. Saw Gastroenterologist & Dietician. Continue with PTX and vitamin drinks. As pain very severe during obstruction
    attacks, advice from pain team recommended Effantora (buccal Fentanyl). This slightly effective for very short period only.
  • Nov 09 - Saw Oncologist and was assured all was generally well, current problems notwithstanding.
  • April 10 - 8 blockage attacks since Oct 09. Saw Gastroenterologist and Dietician again. Will see again in 12 months
  • May 10 - Saw pain team. No increase permitted to Effantora so therefore abandoned. Tramadol, originally prescribed for back pain, is now Jan's primary pain relief for obstruction attacks. She has Paracetamol Plus (paracetamol+caffeine) or occasionally Aspirin+Paracetamol+Caffeine tablets, for frequent back or pelvic pain.
  • Nov 11 - Saw Oncologist again. No new problems.
  • April 11 - Saw Gastroenterologist and Dietician again. 13 obstruction episodes with pain and some with vomiting, one particularly bad in early April. Doing well in terms of maintaining a low fibre diet. Inevitably it is unhealthy! The Ensure Plus drinks should be maintained but vitamin D was low when measured and as she could not tolerate Calcichew-D3, it is hoped that vitamin D injections will be possible via GP.
  • Nov 11 - Saw Oncologist again. To have minor surgery procedure carried out on her arm. OK in most other respects as far as the original disease is concerned (aside from the obstruction/pain attacks from time to time of course).
  • Feb 12 - Had small tumour removed from arm which was confirmed as benign March 2012. Not doing to bad as far as pain/obstruction episodes are concerned. Still exceptionally careful to observe very low fibre/low residue diet. Right leg weakness getting worse.
    Takes a probiotic multi-vitamin tablet daily to increase vitamin D and other vitamins.
  • Oct 13 - Had six months with no obstructions to Sept 13 - something of a record! But since then, in 5 weeks or so, there have been 6 instances, each seeming to be over before returning quickly.
  • Nov 13 - Saw oncologist again. Had option of not needing to attend clinic again, unless needed. Opted strongly to keep up yearly visits, as problems are ongoing (leg weakness, bowel, skin).  Full examination and OK from cancer point of view. To be referred again regarding leg weakness, which is getting much worse.
  • July 14 - Started physio (finally after a referral wait of several months) in hospital gym. Used a sitting exercise cycle which she found really good. As the next appointment is weeks away, we have ordered a bike similar to it for not much money from ebay to use at home. She also does some other leg exercises. She is deperate to ensure she does not lose more mobility than she has to. So this seems encouraging.
  • Aug 14 - Exercise is working really well. Strength increase, walking more easily and quickly. If anyone has suffered nerve damage affecting legs from lower pelvic radiation, and mobility is thereby affected, as Jan's had been increasingly - well it is recoverable to a degree, with persistence!
  • Aug-Oct 14 - Jan has suffered almost continual bowel obstructions, with the attendant pain and vomiting. There is only a few days between since early August. At the time of writing she has lost 2 stone in weight because any food has not stayed down, save for a plain biscuit here and there, though liquids stay. She is to have an urgent review with the oncologist shortly.
  • Oct 14 - Jan fractured her hip. It was repaired with a titanium 'intramedullary nail'. Still recovering.
  • April 15 - Delayed oncology appointment after hip fracture.
  • Dec 15 - Jan stopped taking PTX. GP thought it was contributing to syncope (feinting).
  • Feb-April 16 - Saw GP - still feinting problem. Had 24 hr ECG which showed no serious problems.
  • Sept '17 - Suspected heart attack March '17. Not thankfully. Still feints at this stage. Seem to have largely gone. Mobility deteriorated. In process of having balance physio if allowed. Usual obstruction attacks stilll very frequent.

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Introduction Our Story Surgery Options Management Links Update Making Contact Updated 17 September 2017 Document made with KompoZer

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