Pseudomyxoma Forum

Pseudomyxoma Forum http://www.christie.nhs.uk/pmp/forum/ This is an XML content feed of; Pseudomyxoma Forum : Last 10 Posts Fri, 10 Feb 2012 07:04:13 +0000 Fri, 10 Feb 2012 00:47:28 +0000 http://blogs.law.harvard.edu/tech/rss Web Wiz Forums 8.05 30 www.christie.nhs.uk/pmp/forum//RSS_topic_feed.asp Treatment : Study into treatment to dissolve PMP mucous http://www.christie.nhs.uk/pmp/forum//forum_posts.asp?TID=779&PID=11040#11040 Author: ChrisP
Subject: Study into treatment to dissolve PMP mucous
Posted: 10 Feb 2012 at 12:47am

The answer is out there and i'm sure they'll find it sooner or later. These things seem to take years though. My oncologist was telling me of a new drug that had come on the market since I was diagnosed 2 years ago and he was trying to find out if I could have it with my current concoction of chemo. Unfortunately, as it had only been tested on colon cancer he wasn't allowed the funding. Of course that and many other things could be the instant cure but it seems difficult for them to make any decisions when dealing with PMP. I'd quite happily sit and swallow bleach soaked lemons if I thought it would get rid of the stuff but if it's not on the oncologist list of certified/verified/tried and tested tools, they're never going to use it.]]> Fri, 10 Feb 2012 00:47:28 +0000 http://www.christie.nhs.uk/pmp/forum//forum_posts.asp?TID=779&PID=11040#11040 Signs & Symptoms : Newly diagnosed, seeks help! http://www.christie.nhs.uk/pmp/forum//forum_posts.asp?TID=739&PID=11039#11039 Author: ChrisP
Subject: Newly diagnosed, seeks help!
Posted: 10 Feb 2012 at 12:38am

I'm not medically trained of course lish but personally I would probably avoid using things like fibre gel too often. Not that there's anything wrong with it or laxatives and things like immodium (basically anything that alters your 'movements' through medication). The belief I have though is that these things help your body to to perform functions it isn't doing right itself. All very well in somebody that's basically fit and well other than their toilet habits or someone who's having major problems and has to take them to avoid serious pain and discomfort or once in a while to help the body along but after the MOAS surgery your body has to learn to do a few things again for itself. If you go giving it too much help it may just rely on the medication and not improve on its own as fast as it would. Of course I may be talking complete rubbish but having had 5 (I think) operations now and being on my second stoma, i'm getting the hang of this bowel recovery carry on. I've had the fibre gel, immodium capsules and tablets and to be completely honest i've found that just letting your bowels sort themselves seems to get them back to normal quicker. I know countless fit and well people (mainly women) who at some point or other have decided to take things like Senokot (if that's how you spell it) or some other bowel affecting medication and they've had nothing but problems since and ended up being diagnosed with irritable bowel syndrome. Your best bet I think is to look on the various cancer websites and they give you lists of foods that either 'thicken' or 'loosen', prevent wind, acid and all kinds. I've been through them all... jelly babies and marshmallows to thicken, liquorice to loosen, ginger or mint tea to get rid of bubbles. I'd give them a go first, I found most of the recommendations worked within a couple of days.

I stress again of course, i'm no medic, it's just my personal opinion.

]]> Fri, 10 Feb 2012 00:38:36 +0000 http://www.christie.nhs.uk/pmp/forum//forum_posts.asp?TID=739&PID=11039#11039 Signs & Symptoms : Newly diagnosed, seeks help! http://www.christie.nhs.uk/pmp/forum//forum_posts.asp?TID=739&PID=11038#11038 Author: Lynn
Subject: Newly diagnosed, seeks help!
Posted: 09 Feb 2012 at 11:09pm

Hi William, Welcome back to the outside world! Glad to hear your op was successful and low grade. Sorry to hear you had a few blips. I think I was very fortunate to have got through with no setbacks in hosp. I can relate to you with the motion thing!! I still find it 'hard' at times - excuse the pun, but I had the district nurse calling in on me daily when I arrived home and they prescribed me Movicol. Its not a laxative but a softner and it really helps. Its a sachet that you mix with water, Not a great taste I have to say but I disguise it with a little Orange squash. Hold my nose and gulp it down!! Hope your family are running round attending to you! Take Care.

]]> Thu, 09 Feb 2012 23:09:01 +0000 http://www.christie.nhs.uk/pmp/forum//forum_posts.asp?TID=739&PID=11038#11038 Signs & Symptoms : Newly diagnosed, seeks help! http://www.christie.nhs.uk/pmp/forum//forum_posts.asp?TID=739&PID=11037#11037 Author: lish
Subject: Newly diagnosed, seeks help!
Posted: 09 Feb 2012 at 7:59pm

yes.. my mum said that or fibre gel.. which is a powder thing,, x

]]> Thu, 09 Feb 2012 19:59:59 +0000 http://www.christie.nhs.uk/pmp/forum//forum_posts.asp?TID=739&PID=11037#11037 Treatment : New member recently diagnosed http://www.christie.nhs.uk/pmp/forum//forum_posts.asp?TID=568&PID=11036#11036 Author: ChrisP
Subject: New member recently diagnosed
Posted: 09 Feb 2012 at 4:28pm

Food parcels are always a good idea for students. Not that I want to make you worry but I have a really odd story about students and their eating habits... I once lived with a nurse who over a few days got very distressed about a patient who was a student. He was an urgent case and was dying because all his organs were shutting down but they couldn't work out what was wrong with him. They thought because of the state of him that he had AIDS or something like that but none of the tests they did could work it out. He eventually died before they had chance to work out what was wrong with him. During the autopsy they worked out that he died of organ failure due to malnutrition. He'd been a student who'd basically got used to not feeding himself and had slowly wasted away until he ended up in hospital critical. He must have spent a lot of time alone though for that to happen.

Anyhoo, that should cheer you up (sorry). I'd love a wood burner but live in a very modern house. Not only would it not fit anywhere but most of my town is smoke free so we'd not get away with that either. If you want to get rid of some of your guests though, stick a bit of wood in that's been preserved or painted, that will sharp shift them.

Glad everything is going well for you. x

]]> Thu, 09 Feb 2012 16:28:52 +0000 http://www.christie.nhs.uk/pmp/forum//forum_posts.asp?TID=568&PID=11036#11036 Treatment : New member recently diagnosed http://www.christie.nhs.uk/pmp/forum//forum_posts.asp?TID=568&PID=11035#11035 Author: mandy
Subject: New member recently diagnosed
Posted: 09 Feb 2012 at 3:58pm

Hi Chris

probably the best idea to wait and see what options your oncologist can give you on pain relief.

Love the new house, keeping busy with decorating etc. Had a wood burner fitted. probably the best purchase we've ever made. Dave gets wood from work, old pallets mainly. Never been so warm and we seem to get loads more visitors. I'm sure they only come to sit infront of the burner. Constant comments on how wonderful it is!

Jobs great, recently had my contract renewed and now do more hours.

Havent seen much of Amy since xmas so the washing machine is getting a well earned rest. it's her birthday in a couple of weeks and she can't get home because of uni deadlines. Didn't like the idea of her spending her birthday alone so we've booked a couple of days off work and we're going to leeds to see her and deliver presents and of course a food parcel.

luv Mandy x

]]> Thu, 09 Feb 2012 15:58:06 +0000 http://www.christie.nhs.uk/pmp/forum//forum_posts.asp?TID=568&PID=11035#11035 Treatment : New member recently diagnosed http://www.christie.nhs.uk/pmp/forum//forum_posts.asp?TID=568&PID=11034#11034 Author: ChrisP
Subject: New member recently diagnosed
Posted: 09 Feb 2012 at 3:42pm

Hiya Mandy, good to hear from you. I've almost given up on the codeine. This is day 2 of swapping the paracetamol for it and i've been in a lot of discomfort, almost pain, ever since. Codeine doesn't seem to give me any of the bother a lot of people get, I don't get dizzy/high/weak or anything else, the only thing I actually do want from it though is pain relief and it's not working. I would have thought it would be more effective than paracetamol but it just goes to show you. I don't think I can switch back to paracetamol though Mandy because what I was told was that because of my physical state and the immune system depletion I will get with the chemo, paracetamol would mask any temperature rise I would have should I get an infection. I have an appointment to see my oncologist on Monday so i'm just going to hold out till then and give the codeine a decent chance to get into my system. If it hasn't by then I will see what he has to say about it all. Till then though there's no great panic, it's not unbearable pain and I have several bottles of oramorph and a spoonfull of that gets rid of any discomfort for a couple hours.

Have you fully settled into your new job and house yet and got used to your daughter not being around to mess the place up? Unless of course like many students she brings her washing home for you to do.

]]> Thu, 09 Feb 2012 15:42:46 +0000 http://www.christie.nhs.uk/pmp/forum//forum_posts.asp?TID=568&PID=11034#11034 Treatment : New member recently diagnosed http://www.christie.nhs.uk/pmp/forum//forum_posts.asp?TID=568&PID=11033#11033 Author: mandy
Subject: New member recently diagnosed
Posted: 09 Feb 2012 at 3:27pm

Hi chris

haven't posted for a while but I try to read all posts.

Sorry to hear that you are having more treatment. I know what you mean about codeine. I was recently prescribed it and it made me really ill. Nausea, sickness, headache and slept constantly.Soon went back to the paracetamol.

I wish you well with your treatment.

Luv Mandy x

]]> Thu, 09 Feb 2012 15:27:36 +0000 http://www.christie.nhs.uk/pmp/forum//forum_posts.asp?TID=568&PID=11033#11033 Treatment : Study into treatment to dissolve PMP mucous http://www.christie.nhs.uk/pmp/forum//forum_posts.asp?TID=779&PID=11032#11032 Author: biocat
Subject: Study into treatment to dissolve PMP mucous
Posted: 09 Feb 2012 at 3:18pm

This looks intriguing. Vitamin C and hair bleach together. Actually I think the concentration of hydrogen peroxide is closer to that found in mouthwash which is around 1.5%. I wonder what the pH of the abdomen containing PMP is; presumably in the range they tested.

I fear that this might take quite a while to get anywhere in the clinic. Nice to know that people are working on it.

]]> Thu, 09 Feb 2012 15:18:55 +0000 http://www.christie.nhs.uk/pmp/forum//forum_posts.asp?TID=779&PID=11032#11032 Treatment : Study into treatment to dissolve PMP mucous http://www.christie.nhs.uk/pmp/forum//forum_posts.asp?TID=779&PID=11031#11031 Author: Markarina
Subject: Study into treatment to dissolve PMP mucous
Posted: 09 Feb 2012 at 3:03pm

Just been browsing the PMPCURE website list of recent publications and came across this study that shows promise for a treatment to dissolve the mucous produced by PMP]]> Thu, 09 Feb 2012 15:03:17 +0000 http://www.christie.nhs.uk/pmp/forum//forum_posts.asp?TID=779&PID=11031#11031