ukmember

Does 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.

Yes, 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.

Haven’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.
Patricia

I 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.

My 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.
Patricia

I 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.

It 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