September 26, 2008 at 10:08 pm #23056
Many thanks for your welcome and for your kind words. I had read many of the posts on this site before I posted here myself and they have all helped me enormously. I hope that I can give something back to people here, as you have all given to me. It does feel better to know that there are others out there and that we are not alone in this.
Prayers to you and your family.
GavinSeptember 26, 2008 at 9:55 pm #23039
Many thanks for your post and sharing your experience with me. It’s always good to meet a fellow Scot, just a shame that it is in this manner.
I’m sorry to hear that the tumours have returned and can not be operated on. I do hope that the gemcitabine treatment works as best as possible and slows down the cancer as much as possible. I remember how I felt when my dad was told about CC and that it was inoperable, a massive shock to the system to say the least. My dad was told that any treatment would be to slow down the progression of the cancer, but would not eradicate it. This meeting was with a younger doc on the overall team, the 2nd meeting was with the specialist. Again, this time the specialist told my dad that any treatment would be to slow down the progression. The first treatment that was mentioned in both of these meetings was PDT, the specialist felt this was the best treatment at that time for my dad. We were also told that chemo was an option, but as I understood it, they couldnt do PDT once chemo had been tried. The doc felt it best to start with the PDT and if needed, then do the chemo after. We will just have to wait and see what the next stage of treatment is. My dad is 64 so I don’t know if this has anything to do with what treatment is suitable. I will keep you updated on how this treatment works for my dad. I don’t know why your surgeon dismissed this as a form of treatment for you. I’d never heard of it beofre my dad fell ill, but from having looked into it, I understand that it is relatively new. From what I’ve read about it now, it can be used as a treatment for other types of cancer.
As far as the treatment at Ninewells goes, I have been very happy with the way my dad has been treated. The specialist doctor and his team have been excellent and have treated us all very well. Very happy to answer any questions that we have had and have spend lots of time with us all. The specialist nurses there have also been excellent and helped my dad with getting a Macmillan nurse to come to see him. She came a few times to see him in hospital and help him sort out some stuff with what might be neeed once he got home. Now that dad is home, she came to see him on thursday for the first time and suggested what help he could get in trying to get to sleep at night. There is someone coming out from the Maggie’s Centre at Ninewells to do Reike type massage on him tohelp him relax and hopefully sleep better. Also, the Macmillan nurse will be coming to see him once a week at home to see how he is doing. The nurses at Ninewells were amazing, nothing was too much trouble for them and to be honest, I have nothing but praise for everyone involved in my dad’s treatment.
I don’t know what the view in Dundee is as to how people in America may or may not get this or that treament. No doubt cost of treatment would be an issue which I assume is related to the level and amount of isurance cover someone has.
Thanks very much for your post Ron. I hope all goes well for you with the CT scan on the 8th of Oct.
My best wishes to you.
GavinSeptember 26, 2008 at 9:04 pm #23065
Thanks for welcoming me to this excellent site. I found it very beneficial to me personally to write about what is happening just now. I didn’t know how I would feel before I posted on here for the first time yesterday, but it feels good to talk to other people about my experiences. If someone gains or learns anything at all from my posts, then I am extremely happy to have been able to help them, even if it is only a little bit.
Best to you.
GavinSeptember 26, 2008 at 8:57 pm #23064
Thanks for your post and for sharing with me. I’m glad that my post was useful to you regarding PDT and if there is anything else regarding PDT that I can tell you about then just ask and I will do my best to answer. My dad never felt the intense heat you talk of you having suffered with the itching. Even after seeing how the itching affected my dad, I can’t even begin to understand how it must have felt for you suffering with the itching and the intense heat.
The piriton tablets seemed to help my dad a bit, buit not enough. I totally agree with you regarding treating the jaundice and how if affects quality of life. When the doc told us that my dad had CC and that it was inoperable, one of the first things he talked of was getting the stent in first to clear the jaundice and that he would feel much better when the itching stopped. Then they would move on to the next stage of treatment.
Am really glad to have talked to you, just sorry that it has to be about stuff like this. I hope you managed to enjoy some of your time in our wee country, and perhaps enjoyed a plate or 2 of our national dish!!
My best wishes to you.
GavinSeptember 26, 2008 at 8:54 pm #23063lisaMember
The stent will probably eventually need to be replaced. However, I have been told that a metal stent lasts longer than the plastic kind. When you have the stents in, you really need to watch for signs of infection – fever and chills. If your dad experiences them, he needs to call his doctor and probably get on antibiotics. Infection is a major cause of complications and death for cc. I have battled infections about half a dozen times now that landed me in the hospital.
~LisaSeptember 26, 2008 at 8:39 pm #23062
Thanks for sharing about Teddy and how the ice bags worked for a while, I wish we had thought of that at the time! Does Teddy still have his stent in? The doc never said to us how long my dad would have to keep his stent in for, but I am assuming that it will be in for good? He did say though that if my dad starts itching again then get in touch with his GP or specialist nurses immediately as this could be a sign of the stent getting blocked and the bile duct getting blocked again. I know they put a metal stent in which I believe has lots of tiny holes in it to release fluid.
Best to you and Teddy
GavinSeptember 26, 2008 at 8:26 pm #23059
Thanks for your kind words, support and for sharing your story with me. Am so sorry to hear about your dad and what you both went through. I’m glad that you shared these good talks together and I’m sure that they meant a lot to your dad as well.
I can fully relate to what you and your dad must have gone through with the itching having seen what my dad went through. He would sit there for hours on end itching and scratching away and it got to the point where he was finding it hard to sleep because of this. The worst part for him was the itching around his eyes and he was constantly taking off his glasses and rubbing his eyes. What was of a great worry to us at this point was that we did not know why he felt like this.
Thats pretty bad that your doc didn’t understand about your dad’s itching. When my dad went to see his GP about this, he hadn’t been diagnosed with actual CC, but was very jaundiced and waiting to go to the hospital. The GP prescribed Piriton which helped a bit, but did not stop the itching. In the hospital, my dad still took the Piriton and still had the itching. It was explained to him that the itch was a result of the jaundice and that the stent when it went in should help. Once the stent was in, my dad also had a billary drain draining the bile duct of blocked fluid into a bag that was attatched to him 24/7. The doc at the hospital described this as a “2 pronged attack”. My dad’s response was along the lines of attack it anyway you want!! After more than a few weeks of itching, he would have tried anything to get it to stop! Clearing the bile duct of the blockage was also necessary before the PDT treatment could be started and the docs wanted to get on with the treatment ASAP, as did my dad.
Peace be to you and your family and my thoughts are with you also.
GavinSeptember 26, 2008 at 7:59 pm #23061
I’m glad the info regarding PDT was helpful to you, hopefully the treatment will be helpful to my Dad! If there is anything specific you or anyone else wants to ask regarding my Dad’s treatment then ask away, I am more than happy to help if I can.
When Dad puts on the hat, gloves and glasses, he may think that he is Michael Jackson, however, he most definitely does not have the same moves! It was very funny to see him all dressed up like that shuffling his feet thinking he was cool! Certainly the nurses and us all had a great laugh as well and a few of them took some photos of him! Although he may have felt like a star, he can not however move like one! My Dad has a great sense of humour and took all of this very well. It’s great for us to see that no matter what is wrong with his body, he hasn’t lost his sense of humour.
Prayers of support to you coming back across the waves from this side of the pond.
All the best
GavinSeptember 26, 2008 at 7:53 pm #23060csMember
Gavin – This is a wonderful site and it brings us all closer together as we fight this battle together with our loved ones. I think we are all so afraid of the unknown and it is comforting to know there are other people out there who are going through the same things whether it be the patient or the caregiver. Keep up the posts and God bless you and your family. I am in the fight with my Mom who was diagnosed in May, 2007 and is now in Home Hospice care.September 26, 2008 at 1:56 pm #23055karenMember
Sorry you had to join our site, but welcome. My prayers for your Dad, you and your Mom. You are a wonderful son to care for your parents in the manner you do. Stay strong.
KarenSeptember 26, 2008 at 12:50 pm #23054darlaParticipant
Welcome & good luck to you & your family on this journey that no one asks to go on. Your post was very informative. Any information and experiences are helpful to others on this site. I wish I had found it before my husband passed away as I would have known more what to expect, however, I am glad I found it as I have gotten so much help & support from everyone here. Just knowing I am not alone & that others are out there that truly understand helps. You & your family are in my thoughts & prayers.
DarlaSeptember 26, 2008 at 10:53 am #23053ron-smithMember
Welcome to the site; it’s just a shame that you have to be here. I live in Falkirk which, for the benefit of our American friends, is about a 90 minute drive from Dundee. As I’ve said before, Scotland is a small country and so everywhere is close to anywhere else.
I started my treatment at Edinburgh Royal and had 2 resections done there in August 2006 then March 2007. Unfortunately the tumours returned and could not be operated on. So for the last year I have been attending the Beatson Centre in Glasgow. That’s where things really started to get a bit hairy. I had already been told that the only treatment that would be suitable for me would be palliative chemotherapy and that gemtitabine would be the recommended drug. However, I was also left in no doubt that any benefit would be, at best, marginal and that it could have a really detrimental effect on my general health. It was left that I could start the chemo at a later date if I started to show symptoms. So every 4 weeks I attended the clinic at Beatson, was asked how I was feeling, had some blood taken and sent home. Recently I noticed changes and general discomfort so on Tuesday I started my first course of gemcitabine. Everyone tells me that gemcitabine is tolerated well by everyone – I have been feeling dreadful since Wednesday morning! My worry now is that the cancer has spread so much that it is that and not the gemcitabine that is making me feel so unwell. Anyway, I have a CT scan scheduled for October 8 so may get some answers then.
I didn’t mean to give you so much of my tales of woe. You and your family have enough troubles to be getting on with. It is good to see that Ninewells is being proactive in arranging treatment and I will be really interested in hearing how your father gets on with PDT. I mentioned this to my surgeon a year ago and it was dismissed. One thing you will notice on this site is the involvement of insurance companies. Depending on the cover you have you either get very little treatment or everything that’s going. The perceived knowledge in Edinburgh and Glasgow is that Americans get so many different treatments because the insurers pay for it and the hospitals need the income to pay for the facilities. I would be interested to learn if they have the same view in Dundee. The other obstacle to treatment here can be the patient’s age. How old is your father?
All the best to your father
RonSeptember 26, 2008 at 6:54 am #23052tiapattyMember
I believe that telling our stories is necessary, it’s therapy for you to tell it and for us to read it, we need to know we are not alone. Welcome to the board.
PattySeptember 26, 2008 at 5:04 am #23051devoncatMember
I was diagnosed when I was in Scotland, though I was stationed first at Gartnavel then at the Edinburgh Royal Infirmary.
I am sorry your father is having to go through this. Thank you for your post as I think I learned more about PDT than from any source. I too had that terrible itching coupled with intense heat (I was so hot when I was juandiced, who knows what chemical reaction was going on in my body to produce so much heat!). The doctor gave me peritin tablets, but they were a joke. From a patient standpoint, I have to say I dont understand why doctors dont take the jaundice more seriously. It can be so terrible that it can really affect your quality of life. There has to be something more for its treatment.
Anway, best of luck to your father.
KrisSeptember 26, 2008 at 3:30 am #23050lainyMember
Teddy had 2 weeks of intense itching before he was diagnosed. We found a cream at Walgreens called, I believe, Sarna. It was the only thing that would help. Also some ice bags worked too for awhile. Once he had the stent in the bile duct to release the bile the itching stopped.
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