April 1, 2006 at 12:10 pm #13715caroline-stouferSpectator
I just got in a book at our bookstore called EatingWell through Cancer and one of the chapters is about eating to gain weight. Would you like me to send you a few recipes? If yes, I may just post them on the nutrition section.
As I mentioned in my post about my clinical trial, while I’m dealing with a nasty rash, my energy and appetite have improved dramatically. I started on a steroid yesterday for the rash, and the oncologist said it would make my appetitle better as well. I worked 10 hours at the bookstore yesterday and did bookkeeping at home two hours before that, so my energy level was way up. Did come home and crash on the couch and did a little Sudoku and watched Real Time with Bill Maher – a comedy show about politics on HBO.
Glad to hear about your husband’s progress.
-CarolineMarch 31, 2006 at 9:24 pm #13714
Today 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.
PatriciaMarch 31, 2006 at 11:30 am #13713
Good to hear that you are doing better, but I know it is wearing out to be a caretaker. Many times I do things for others instead of doing things for my self.
Lovely that your husband had the strength to out to a concert, were there no trouble with lights?
My dad is not all that well. I think the stents doesnt work properly. He has come down with fever a few days ago and the hospital has prescribed antibiotics but they dont want to see him. When he had fever in january they cultured his blood to give him the right antibiotics but they havent done this this time. And the outside drains bleed the other days and mum called them and they said that he should stay home. But of course we get worried when it is bleeding etc so we would prefer that they had said that we could come by for a quick look at it. The hospital said that the home nurse should close the tube so the bile should go in the intestine, I think it might have been to early to do that since a lot was coming out in the tube/bag, but they closed it. We are going to a talk at the hospital on tuesday, so hopefully all our questions will be answered then.
I never thought that ascites could go away without draining when it first had come? But hopefully they can find the source and stop it, I have heard that it should be very uncomfortable to have and in some cases make it difficult to breathe.
No we havent decided on pdt yet I am corresponding with different doctors abroad trying to find a hospital for instance in germany close to the danish border, so transportation will be less of a problem.
Have a nice weekend.
Regards RandiMarch 29, 2006 at 10:16 pm #13712
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.
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.
PatriciaMarch 29, 2006 at 6:35 am #13711
I am getting worried since it is a couple of days since I have heard from you. Is everything ok?
RandiMarch 23, 2006 at 8:10 pm #13710
Is your husband feeling better from the nausea a few days ago? I really hope so.
Dad was cancelled on tuesday but got in on wednesday. I earlier this week I had contact to one of the radiologists in the hospital and I sent him material on PDT. He was very interested and invited me to dads procedure so we could talk.
Dad got re-arranged the biliary tube that goes out on the outside and they have tried to remove the bag so they think it will drain internally into the intestine. I hope so, he was discharged today but had a slight fever yesterday evening, they think it was just because they had done the procedure. This morning the fever was gone.
I wasnt at rounds this morning but one of the other doctor had said that pdt wasnt an option for dad, but since they only have read the two articles I have sent I dont think I can trust that. It will be up to a doctor with more knowledge to say that.
Have you paid for the procedure yet, I am interested in the amount it would cost. Luckily your husband was admitted for long.
I wish you everything good in life.
RandiMarch 19, 2006 at 8:55 pm #13709
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.
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.March 19, 2006 at 6:33 pm #13708julesSpectator
patricia, yes i did mean the centre in bristol, thankyou for the link, my dad is thinking of going there.
my dad is doing ok, however is hampered by a persistant cough that induces coughing fits sometimes when he tries to talk and is really getting him down. we have contacted drs about it, everyone has said that it is a chest infection, my dad has recently completed a course of anti biotics however the cough persists.
the oncologist that he saw is dr andrew webb based in brighton, prof cunningham referred my dad to him. dr webb was dismissive of chemo, he said that it has a 10-15% likelyhood of having any effect on cc, my dad is going to see another oncologist this week at UCL (not sure of the name – i will check and let you know) who specialises in cc, dr webb said that it was unlikely that he could give him any info in addition to the advice he gave however we feel that it is well worth getting second opinions.
as far as chemo goes – nothing unexpected in the advice, i realise that chemo regimes for cc are undeveloped. my dad has done some reading on the subject – the median survival for post resection patients is about 2yrs (for extra hepatic cc) – as prof lodge told him, there is a 50% chance of long term survival and 50% chance of surviving less than the 2 yrs. (i think i have this right). my dad is going to work on making sure that he is in the former group.
‘statistics’ – don’t you hate them! – i know i do.
i am hoping your husband has a favourable response to the PDT and is starting to turn a corner with this ‘bloody disease’ (as my dad refers to it).
JulietMarch 19, 2006 at 12:41 pm #13707
How 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
PatriciaMarch 19, 2006 at 10:43 am #13706julesSpectator
i am pleased to hear that the PDT went well. I have been thinking of you both. my dad is very interested in the cancer centre in wales, could you give me some contact info?
thanks, julesMarch 18, 2006 at 10:05 pm #13705
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.
PatriciaMarch 18, 2006 at 8:30 pm #13704
Thank your for your best wishes, they go right back to you. Got to hear your husband is feeling well.
I can certainly understand “the no more doctors”. I have heard that the shii take some kind of mushroom should boost the immune system but I have not researched it. Whether alternative or hospital treatment it is a jungle out there.
I am a little confused when you talk about stent and biliary tubes I always thougth it was the same thing. would you please explain the difference to me.
Is it hard to remember that your husband cant have sunshine right now? I would guess one could forget it and just go to the mailbox etc. Are there no problems with indoor ligthing?
Have a nice weekend.
RandiMarch 18, 2006 at 7:57 pm #13703
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.March 18, 2006 at 2:43 pm #13702
Dad went to the hospital today for bloodwork and then they went home. Later the doc called that they wanted to see him but he wont go until tomorrow. Doc said the bilirubin is increasing rapidly but gave no numbers.
I tried to mail rainer wulf in germany but a failure notice came back. so I tried the mail for the headoffice and he replied that he had sent my mail on to someone else and they have not replied yet.
How did the procedure on wednesday go, it was a change of a stent or a new one.?
Are you both home now? Has there been no problems after the pdt?
RandiMarch 18, 2006 at 11:34 am #13701
I 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!’
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