- Original treatment for endometrial cancer consisting of some
chemotherapy and about 40 sessions of radiotherapy to the pelvis, both
front and back.
- Codeine Phosphate to help "rapid transit".
- Dextromoramide, a powerful opioid analgesic for pain relief during
- 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) +
- July 02 - Hospitalised with series of pain
and vomiting (blockage)
attacks. Treated conservatively with IV hydration, morphine and gastric
- 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
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.
effects of Vit-E at high doses unknown so stopped vit-E, continue
- 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 - A skin lesion, thought to
be Bowens disease, has been developing on Jan's back on the periphery
Her oncologist thought now best to have it removed and
examined, so referred to plastic surgeons.
Dec 05 - 8 Jan 06 - series of attacks ending in
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
relatively free from attacks following antibiotics for a severe asthma
Thought worthwhile trying antibiotics for 5 days every
as prophylactic. These upset her so abandoned.
He also suggested
Fentanyl in lollipop lozenge form (Actiq) for pain. Not
- Oct 07 - Original Oncologist Janice sees
every year. Found iron low and
recommended supplements. Saw GP who thought likely to do with
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
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
- Jan 09 -
Pain/vomiting attack late Dec 08, repeated three times
Jan 09. Well enough between to see Gastroenterologist and
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
- 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
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
occasionally Aspirin+Paracetamol+Caffeine tablets, for frequent back or
- 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
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
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
Takes a probiotic multi-vitamin tablet daily to increase vitamin D and
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.
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
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
- 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