ukmember
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ukmember
MemberDoes anyone have any experience of hydrazine sulphate? I know the medical establishment is against it , but it is the only thing I have heard of that is specifically for cachexia.
ukmember
MemberFood Suypplements:
IP6
http://www.youngagain.com/inositol.html
Anti oxidants
http://ict.sagepub.com/cgi/reprint/3/4/277
AHCC
http://www.ahccresearch.com/Dairy:
As it happens my husband had already given up mik products for several months before he became ill. He met prof Jane Plant on a train and she explained to him that she had fought off breast cancer on two occasions by significantly changing her diet.
She summed up the basis of her approach by saying ‘Avoid the cow!’ no dairy and no beef. She has written a book about cancer and nutrition. She is not the only one to say avoid dairy; the injunction to avoid dairy seems to be widespread.
I also had given up milk products since I often woke in the morining feeling nauseous and since I cut out the milk I don’t have the sicknesses anymore. Not proof I know but I do feel better.I ordered AHCC over the internet from the US. FYI my GP tells me that another of his cancer patients is also taking AHCC.
My husband is not having any chemo at the moment and I feel that his position is stabilised with the supplements he is taking. I may be completely wrong but blood tests of liver function a week ago were almost normal.
How did you find Britol. My husband and I found it a turning point in our approach to his illness although we have found it diffcult to keep up with the regime since getting back into the everyday routine of life.
Best wishes to you and to your daughter.
PatriciaIf you need any help or advice about various complementary ot integrated apporoaches, I have found Patricia Peat of Cancer Options UK very helpful.
ukmember
MemberYes, the tumour cells ‘grab’ the going glucose and starve the normal cells which draw on fat and then lean tissue for sustenance. In our experience doctors don’t seem to take it seriously There is a Dr Gold in the US who says that more people will die of the effects of cachexia than of the cancer and he treats it with hydro (….something) sulphase.
For anyone in the UK there is a trial going on in Portsmouth to see if thalidomide (the same!!) can arrest the decline in weight. My husband won’t take part in any trials since he says they are unproven ad he is not prepared to take the risk. I think that if I were in his shoes I wouldn’t be so fussy but it’s not my call.
We have been recommended steriods to stimulate the appetite and make my husband feel more like eating and eating more protein. I will ask the consultant about it on Wednesday.All the best to you and your mother. I hope she is feeling better soon.
ukmember
MemberMy husband takes two daily. He didn’t have a resection since the cancer had spread beyond the bile duct. I don’t know if it working or not but liver function blood tests taken three days ago are almost normal. My view is what harm can it do given the dreadful harm that the tumour is doing? he also takes IP6
Patriciaukmember
MemberHI
it’s Patricia. My husband has declined chemotherapy. he has had PDT three weeks ago. PDT is not a cure. It works to shrink the tumour in the bile duct so that the stent drains the liver more effectively, it doesn’t tackle metastases. Your mother’s high bilirubin suggests that the bile duct is not draining bile from the liver. Does she have a stent?
Has she tried alternative treatments like IP6 and AHCC coenzyme 10 and antioxidants? If orthodox treatments are not effcetive and they seem to have little effect as far as I can see, then perhaps she should try alternative approaches.
I hope you find some hope and I wish you and your mother every best wish.ukmember
MemberToday my husband sat in full light and it hasn’t bothered him. I think that in the UK the light at this time of the year is not strong enough to produce a really severe reaction. He has been 21 days since PDt so only another 10 or so to go.
The Liver function blood tests came back today they are practically normal -Bilirubin 11 (at the height of the cc it was 600 plus) albumin which is usually a sign of ascities I believe was 30 2 weeks ago and is now 34 (35 is the low end of normal) Even the GGT which is usually very high in patients with hepatobilliary disorders is coming down.
The doctor has recommended a diuretic for the ascities to see is it will help. WE have an appointment next Wednesday and if it is still bad I expect they will drain it then.
If it gets too uncomfortable over the weekend I think we will go to A & E and get it drained immediately. On a more positive note one of the doctors who does PDT in the UK said that after the teatement patients often have flare up and they get swelling but he sees that as a good thing since it indicates tissue burn. So maybe that is what is happening.I am quite shocked at the hospital’s treatment of your father. It appears very uncaring surely if there is bleeding into the external drain someone should pay attention to it.
I hope that you have better treatment and care on Wednesday.
All the best to you and your father.
Patriciaukmember
MemberHaven’t been here for a few days as I have been ill. I’m never ill but I guess things just caught up with me. Anyway, I am on the mend now – another couple of days I will be my old self.
My husband is mostly OK, given the severity of his situation. He was able to go to a concert on Sat and we had the family over for Mothers Day lunch on Sunday and (this is great) on Monday he cooked dinner and ate very well. I feel all of these things are a step in the right direction, the more normal things he does the more normal he feels. If the weather improves we will be able to take walks very soon – as long as it is not too bright – and build up his strength.
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He is still very thin and low appetite but I think I am going to have to accept that this is unlikely to chenge, until we get in control of the cancer.
In the last few days he seems to have had ascites. Swelling across his belly which is very hard. It seems to develop during the evening and ease off during the day. Our wonderful GP has done a blood test. If it doesn’t clear and depending on what the results show, then I think we may have to go the the hospital to get it drained.
It could be another deferred response to the procedures .
Have to wait and see. If this would just settle then I think we could enjoy some quality time together.How is your father? Is the new stent in place and functioning properly. Have you had any more thoughts about PDT? I wish you both well.
Patriciaukmember
MemberYou must take very good care of yourself. Two very stressful life events – your mother’s illness and the redundancy may affect your immune system and make you vulnerable. So please take a little time out for yourself to keep yourself well.
meditation and relaxation is very good for keeping your body strong.
Do you have anyone who can share the care with you?
My thoughts are with you
Patriciaukmember
MemberI think the oncologist at UCH will be Dr Bridgewater. We have seen him; the usual chemo at UCH is 5FU but Dr Bridgewater is conducting a trial of gemcitabane vs Gemcitabane & Cisplatin. They offered this to my husband but he has declined all chemo.
Re the median survival your father will find this article by Stephen Jay Gould interesting.
http://www.cancerguide.org/median_not_msg.html
With a rare cancer he was told the median survival was 8 months in the event he survived 20 years and died of something else. .The response to the PDT was fine but today he has had a lot of nausea, which he has only in mild form until now. The consultant thinks that it a delayed reaction to the treatments and I tend to think so too
here’s hoping tomorrow will bring a more normal day.
All the best to you and your dad,
Patricia.ukmember
MemberHow is your dad? Has he decided about the chemotherapy? I would like to know if it was Prof Cunningham who advised you against chemo.
You say Wales but I’m guessing you mean the Bristol Cancer care Centre where both my husband and I went for 5 days. We found it really inspirational and helpful.
The details can be found on http://www.bristolcancerhelp.org/ I think everyone of the 12 people with us both carers and cancer sufferers were helped by the experience. I am completely different in my approach to this illness as compared with my attitude and behaviour before. Much calmer and more concentrated on the body’s own ability to heal rather than looking for a medical fix.
I hope that your dad finds the help he is looking for.
Best wishes to you and your family
Patriciaukmember
MemberMy husband takes a whole lot of tablets. The mushrooms you refer to are AHCC. You can’t get them in the UK I order them over the internet from the US. He also takes Antioxidants, Vitamin K, co-enzyme 10, IP6 and milk thistle. All of these I researched on the internet and are said to be helpful in protecting the liver. He takes so many pills he rattles!!
A stent is a fairly rigid tube that is inserted into the bile duct and keeps it open. The drains were flexible tubes that were on the outside of his body. The ones leading to the outside were capped off and didn’t drain from the liver. The internal ones took the bile from the liver down the duct and into the intestine.
They didn’t stent after his operation so they could do the PDT through the tubes. They inserted the laser through the external tubes and into the bile duct. Once there they shone the light onto the tumour and the light interacted with the tumour cells and destroyed them. Not all but enough the make it easier to stent and to slow the rate of growth. If the PDT is repeated it will be done endoscopically because there is no access externally any more. Hope that is clear.
He can be in dull light. In fact he should stay in ordinary light but avoid direct sunlight. On Friday he sat by the window for an hour or two working and even though there was no direct sunlight, the side of his face and neck had ‘sun burn’. It didn’t hurt but in very strong and direct light he could get blistering and more severe reactions. Indoor lighting is fine although they say avoid reading lamps and the like which are strong and directed. It is very dull weather here in London at the moment so it’s not difficult.
Enjoy your weekend.
Patriciaukmember
MemberI think this a wonderful thing and you are very lucky in having such a good wife – and one with the right blood group too!
All the best to both you and your wife.ukmember
MemberI a sorry to hear that your dad has been recalled to the hospital. Please let us know how it goes. I wish him all the best I will email you with an email address where you might have more success in getting info about PDT in northern Europe.
My husband was three nights in hospital. On Monday he had the PDT. Tuesday recovery. Apart from a feeling of nausea and loss of appetite immediately after the procedure he was fine the next day. I have been told though that sometimes the PDT causes a ‘flare-up’ of symptoms. Wednesday they inserted the stent. THis is the first stent my husband has had. He biliary tubes since his discharge from hospital mid December. He came home Thursday and he’s fine now.
We have decided – no more doctors. WE are planning to work on building his immune system to stop the spread of the cancer and hopefully to cause it to shrink. It’s a long shot I know but the effects of chemo on quality of life and the long term effects on the immune system make us reluctant to go down this route. I know that most of the people on this forum are on some kind of chemotherapy and in some cases they have had good results but for us we plan a different route.
Wish us luck.ukmember
MemberI may be wrong but I think there is special equipment needed, which may present a problem. did you email the contacts I gave you to see if there is anywhere closer where you might travel for the PDT?
I am thinking of you and your father and I hope he gets over his fever and the new stent helps him feel better.
I have noticed with my husband that whatever they do (operation,stent insertion, PDT) and even if he procedure is successful, he is affected. He loses his appetite gets tired more quickly and feels a bit sick. I think it is the body’s way of saying ‘leave me alone!’ukmember
MemberIt is done under local anaesthetic. In my husband’s case he had biliary tubes in place, so they used the tubes to insert the laser. The tubes had been left in place after the failed operation at another hospital. They didn’t stent the bile duct then but left the tubes in to facillitate the PDT. I think that PDT is usually done endoscopically, but if there are tubes in place then it is easier. The laser was used on a 5 cms stricture (narrowing of the duct) and hopefully will make the duct more open and less likely to block in future.
There were three doctors there; Steve, the radiologist and the anaethetist. All in all it took about 2-3 hours including the recovery period.
The stent will be placed tomorrow and hopefully no problems.
We don’t have any plans for further scans. he had one on Friday and that seems to show that there has been no spread to other organs. I think we will monitor for the next few months by blood test and general sense of well-being.
Have you decided anything about your father’s situation. Did they do the stent?
How is he?My best wishes to you both,
Patricia
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