Search Results for 'gavin pdt'

Hi Gavin,
It’s good to hear from you too, and I really hope that your dad is still doing really well and fighting the CC. I’m so glad the PDT seems to have been positive for him.
I did pass on your dad’s experiences. My mum discussed all options with her oncologist – but it seems the metal stent (and other underlying problems – possibly secondaries as she has never had her cancer formally graded) has precluded any radiation therapy/PDT, surgery etc. I understand her only option is chemo and they gave a 30% chance of success of this and a 6-9 month prognosis – whats more, they couldn’t guarantee chemo can extend good quality of life or her life at all for that matter. To be quite honest, since this meeting, I think she has given up some hope, but has agreed to go to have mistletoe injections at Park Attwood Clinic as a last ditch attempt to fight the cancer http://www.parkattwood.org/. There is some encouraging outcomes from this treatment, and we desperately hope it makes her feel positive again. I will let you know the outcome. Mistletoe injections work particularly well in conjunction with chemo and can work well on their own I understand – although we are aware that sometimes things will take their own course . Its quite a gentle treatment, so will be nice to try. My mum has quite a bit of faith in this treatment, because 8 years ago a friend’s husband was given same prognosis as her (ie months to live) with lung cancer – and no chemo was offered. He had intensive mistletoe injections and 8 years on is still surviving and cancer free. We pray for a miracle.
In the very least, we are so grateful that she has had some respite from feeling so unwell, since those horrible first days and weeks after diagnosis.
Take care Gavin,
Best wishes to you and your family, and I will keep you posted about the mistletoe in case it is useful for your dad.
Wendy

Hi Jan,

Thanks for that. My dad also did the same test your husband did with the paper bag over his hand to test his skin for light sensitivity. He tested it 4 or 5 weeks after the treatment and his skin came up really red the next day, and it wasn’t even a sunny day that day. He kept fully covered for the next 2 weeks then did the same test again and his skin didn’t burn that time so the gloves came off. Then 2 weeks later he would go out without the hat and then 2 weeks after that the dark glasses came off.

Getting glasses that were dark enough was a bit of pain for dad seeing as he actually needs glasses to see. The optician couldn’t get ones that were strong enough to protect his eyes, so we gave the optician dads actual glasses and he put the strongest tint he possible could on them in line with the data provided with the Photofrin.

My dad never had his stent removed before the laser, he had only had his stent in for a short time before the treatment took place. Here’s hoping that the study at University of Virginia and other trials will prove succesful and that perhaps this type of treatment can be looked at for treating other types of cancer, and also in more detail for treating patients with CC. I had read somewhere that it has been used for skin, lung and pancreatic cancers using varying amounts of Photofrin and other drugs.

It’s good to hear that the 80 something patient you met feels that the PDT is helping her with her quality of life, and I hope that this will also be the same for your husband.

Best wishes to you both.

Gavin

Thanks everyone. It was good to get this appointment over with this week. It sort of feels like a great weight has been lifted from our shoulders just now and we can get back to getting on with stuff again. I think lately I have been worrying too much about the future and maybe need to focus more on the present. We dont know for certain what lies ahead but we will deal with what may lie ahead if and when it happens.

I hope we can get the caravan sorted out soon so that will be one less thing to worry about. Like Kris points out, if my parents can treat it as a holiday rather than just somewhere to stay temporarily whilst building work is carried out then it will be a good break from their day to day life. They havent had a holiday in years so that will be good for them and its my dads 65th in July so hopefully they will be away for that. He wants to go up in a hot air balloon and there is no way in the world mum will go with him so I will go with him. Dads Macmillan nurse has some local caravan park details so she is bringing them round tomorrow when she comes to visit.

Jan, my dad only had the one treatment and that was back in August. If I remember correctly at the time, we were told it would only be done once. That is good to hear that your husband has had it twice and also that you spoke to someone who has had it 11 times. This is something that I will be discussing with dads specialist at the next meeting as it may be an option for further treatment for my dad if required. From what I have read, PDT is still quite experimental as a treatment for CC so it’s good to hear that others outside the UK are having it and more than just one time. As your husband is having the PDT every 3 months, is/was he very sensitive to direct light and sunlight and for how long? Also if I may ask, how long did your husband have to wait to have the laser treatment once the Photofrin was injected? My dad had to wait 48 hours from injection to treatment. After the treatment, he was very sensitive to all types of light and had to cover his, skin, eyes and face by wearing a wide brimmed hat when he was outside for a few months. I hope this treatment is working for your husband and I will keep my fingers crossed for it’s success.

Marion, we never asked about the reason for the recent jaundice and darkened urine. To be honest, we were just so relieved to hear that it had gone, and that news, combined with dads doctors enthusiasm for his overall progress took my mind away from asking questions. What I am going to do before the next appointment is make a list of any questions we have so that we dont forget anything to ask him. I’m going to keep a list of things that may arise over the next 3 months so we are better prepared next time.

Tess, I keep saying to my mum that at least they are going to get a new kitchen and bathroom out of this when everything is all done, and they so do need a new kitchen! Their kitchen is tiny and full of badly fitting odd shaped units from the 1980’s! It’s a bit of a hard sell to them right now, but once they have a caravan sorted out and get away then it will be easier to deal with, especially if it’s sunny!

Many thanks once again to everyone for their kind words and support. My best wishes to you all.

Gavin

Hi Wendy,

It’s good to hear from you again. I’m glad that found everyone’s advice helpful. Everyone here is really friendly and helpful so please dont be afriad to ask any questions. I guess the only stupid question is the one that isnt asked!

Considering everything that is happening, my mum and dads mood is sort of mixed I guess. The building work was due to start this week but has been delayed due to further damage appearing in the ouitside wall in their block of flats which will affect the work needed to be done in their flat. They will probably have to move out of their flat into a hotel while the work is carried out due to the kitchen and bathroom having to be totally ripped out and replaced. The walls will alos need to be dried out with de-humidifiers for a few days even before it can be replastered. They will not be able to cope with all the dust due to their illnesses so need to move out. They cant come to mine to stay as I live 3 floors up and they cant manage the stairs. All in all, this is turning into a complete nightmare! But all we can do right now is get on with it.

Dads mood is pretty good. Yesterday I took him up to day care at the local Macmillan centre, he now goes there every Tuesday for the day and he loves it! He gets tea and toast as soon as he gets there and a 3 course dinner so he’s pleased! It sort of like a group where cancer patients go for the day for activities and to meet others in the same situation. They can get all sorts of stuff like reflexology, reikie sessions, arts and crafts and games, yesterday they were all playing scrabble and dad got another reflexology session, he loves that. It is staffed with specialist nurses and volunteers and is very informal. He also got a blood test done and they will be in touch if need be today.

Has your mum been offered the services of a Macmillan nurse yet? My dad was offered one when he was in hospital for the second time last year and she has been a god send to my parents. She comes to visit us when ever we want at home and is extremely helpful in so many ways, not only for medical matters but for other situations that might arise over time.

Thanks for the link you gave on the microwave treatment, it looks really interesting and hopefull for those who undertake it. Radiation treatment was ruled out along with surgery for my dad due to the location of his tumour, so PDT was offered.

As to the PDT, my dad never asked how long it would extent his life for. I dont think he really wanted to ask that question but I can understand why you want to know that. My dads attitude was that his specialist recommend the treatment so he wanted to go for it straight away. You say it sounds like a tough therapy to endure, but I guess when I compare what my dad went through to what I read here from people who have had chemo, it doesnt sound so bad. The biggest fright my dad got was when he saw the size of the syringe that the Photofrin was in. Not only that, but there was 2 of them! He said he thought about jumping out of the window to escape when he saw them! But they were injected through the valve type thing he already had in the back of his hand so he said it was painless. This was done 48 hours before he underwent the laser treatment so that the Photofrin could spread through the body. Although the Photofrin spread throughout his whole body, most of it was to amass in the cancerous cells which were then zapped as it were with the laser. The laser procedure was done in the same way in which the stent was inserteted and was under some type of anaesthetic. My Dad was deemed suitable for this treatment as the laser was able to directly attack the tumour and would therefore not cause any other damage to the surrounding area. The procedure itself was painless and dad could not remember a thing.

The biggest side affect of the treatment was that his skin was extremely light sensitive for a few months afterwards. The rest of his time in the hospital was spent in his room with the blinds drawn and the lights off. It sounds bad when I put it like that, but it really wasnt as bad as it sounds. he had to stay away from direct sunlight at first hence the blinds being drawn and the lights kept off. When he came out his room for a shower, all the lights in the ward had to be switched off and the large blinds on the main windows also had to be drawn. Once he left the hospital, he had to keep pretty much all his skin covered when he went outside, really dark sunglasses, a wide brimmed hat and gloves. This went on for a while and eventually he could go out without the gloves, then the gloves and hat and eventually with no gloves, hat or glasses. Again, it probably sounds worse reading it than what it really is. He only found it a bit of a hassle remembering to cover up, but he got used to it. as I said before, anything specific you can think of to ask regarding this then ask away.

Tess and Lainy have, as always, given you some great advice and support. All I know about chemo is what I have read on this site from people who have and are undertaking it. I really hope your mum can get referred to a specialist this week so that you can investigate further treatment of some sort. I would imagine the results of your mums scans and stuff should be stored electronically so should be able to be transfered over the NHS intranet to whoever needs to see them quickly.

As to the calcium in your mums blood. If you use the search function on this site then you can see if others have experienced this and posted anything about it. Does your mum still have the itching with the jaundice?

As far as you and your mum wanting to get back into her garden, that is not a ridiculous thought at all. I agree with Tess, hope is never ridiculous. My mum and dad also enjoy sitting outside relaxing and enjoying the simple things in life when they can. I hope you can keep us up to date with all that is happening.

I wish you all the very best.

Gavin

Hi Wendy,

Welcome to the site, although I am sorry that you have to be here. I’m glad that my post has been of some help to you during this stressful time. I know how you feel as I was feeling the same as you are now with my dad last year. In the space of a few weeks, my dad had been refered to the hospital because of the jaundice to being told he had inoperable CC. If you have any questions at all then please, ask away! Everyone will be more than happy to help if they can. This site has been great for me, so much information and support and has been a great help to me.

I dont know anything about the microwave ablation treatment you mention so thanks to Tess for the link and info on that. Im sorry to hear that from your last post you say that this treatment has been ruled out now. I hope you manage to get your mum seen by a specialist as soon as possible. Has your mum had the stent put in yet? My dad felt a lot better once he had his put in, he has a metal one. He suffered really badly from the jaundice, bad itching, yellow eyes etc and like Tess’s dad, once the stent started working he felt so much better. Im sure that once the docs get your mums jaundice sorted then she will feel a lot better.

As to the PDT treatment, ask away if you have any questions and I will help if I can. Have your mums doctors talked with you about types of treatment? Like a lot of other people, my dads CC was too advanced once it was noticed for surgery to be an option. The only symptoms that my dad seemed to be showing was the jaundice and the affects of that. I sure do wish that there were other symptoms that would have shown up at an earlier stage so that surgery might have been an option.

I can relate to how you and your dad are feeling right now having to deal with all of this. It seems like so much to have to deal with in one go and it isn’t easy. But it sounds to me as if you are doing a great job supporting your mum and dad in this fight.

I hope you will stay on the site, ask questions and keep us all up to date on what is happening. Like Tess said, starting a new thread may be a good idea also. Stay positive and I look forward to hearing more from you.

Wishing you and your family all the very best.

Gavin

Hi everyone,

Thanks for your posts. Well we have had no joy so far in trying to get the appt brought forward so it is back to waiting for the 26th unless something happens before then. Dads mood has actually been pretty good the last few days, but he has been really tired and spent a lot of time in bed sleeping during the day. Back to the waiting game I guess.

Ron, thanks for your post. The first diagnosis was indeed extremely tough as I’m sure you know. Hearing that someone you love has cancer and that it is inoperable was not easy to hear. If dads specialist was to recommend a second opinion and could also recommend someone else knowledgeable enough about CC for Dad to see, then I’m certain Dad would want that. Even though it would indeed be gut wrenching as you say to hear the same diagnosis again, I think Dad would want that if it was recommended to him. I hear what you say about different doctors offering different treatments. Because of the location of dads tumour, radiation and surgery were ruled out at the start and PDT was recommeded at first with the possibility of chemo at some point depending on how things progressed.

As far as highs and lows go, you are so right about that! We are trying to stay positive and I know that we must do. Thanks for keeping us in your thoughts and prayers, I will be keeping you and your family in mine.

Bazel, thanks for your post and you may well be right about a type of generation gap between us and our parents. Like your dad, my parents have and are putting their faith in dads doctor, and rightly or wrongly, they are also hesitant right now to push for another opinion. This is something I do have to respect though. Right now I just wish dads hosp appt was sooner so we have some idea of what may or may not be offered to him and at least then we can think about what to do next. You are also so right about the advice being offered by everyone on this site. Everyone here is so helpfull and the advice is very much appreciated. Good luck to you.

Pam, good to hear from you again and thanks for your post. Having to do that drive on a regular basis is not ideal and it must get tiring. If I remember correctly, it is not the best of roads either. Yes Mr Tait is my dads consultant, is he your husbands consultant also? My dad really likes him and spent a lot of time with him when he was in hospital. He also spent a lot of time with us as a family explaining things.

I’m sorry to hear of the problems your husband is having with infections, chemo and his stents. I dont know anything really about chemo or how to counter the effects of the antibiotics. Hopefully someone will be along soon that can help with that. As far as trying to get him to eat, are there not drugs that can be taken that can increase his appetite? I’m sure I read somewhere that there are such drugs, but I could be wrong. Is your husband due for another scan soon? The last one my dad had was in January and that was through in Perth.

I will keep my fingers crossed for your husband and I hope that he manages to get started asap on the gemcetabine. I hope you manage to post more if you can and keep us all updated. I wish you the best of luck.

Many thanks once again to everyone and I wish you all the very best.

Gavin

Hi everyone,

Thank you all so very much for your posts, thoughts and insight, this support is helping me enormously right now, and to be honest, is something I have missed a lot. It really does mean so much to me.

Hi Lainey, thank you so much for your honest and up front words and thoughts, they are much appreciated, and it feels good to be one of your cubs that you are protecting! Please dont think that you have to apologise for your post as you do not, I would much prefer it that someone said exactly what they are thinking, even if it may be hard to hear.

A GP is a doctor, a family doctor as Dannielle points out. Maybe I should have made that clearer in my posts and I apologise for that. As far as this GP being new, he is new to the surgery having only joined it this year, but he is not newly qualified. He is also new to Dad as he replaced Dad’s last GP who retired earlier this year. As to the GP being in on the decision process over Dads treatment, he is not making decisions re treatment after the PDT and chemo etc, the specialist is. I get the impression that the specialist had asked the GP and the Macmillan nurse to talk to Dad about what may or may not lie ahead and this is what they did the other day. If the specialist thought dad needed to go into hospital this week then I think it would have been him that would have made that decision, perhaps with the GP giving his thoughts on how my Dad looked at the time. Im not happy about this as the jaundice and dark urine worries me, but I guess all I can do right now is put our faith in what the specialist says. I did speak to my mum about maybe getting a second opinion, but she wants to see what happens on the 26th with the specialist. As to me talking to all dads doctors etc, I do. The only time I have not talked to them was when they phoned dad giving him the CT scan results as I was not there at the time.

Dad sees his Macmillan nurse next Wednesday and the jaundice and unrine is the first thing that I am going to raise with her again. Just in case anyone is not sure, a Macmillan nurse is a specialist cancer nurse who works with NHS patients in hospitals and the community. Also, Dad has been refered to the local Macmillan centre and his first visit is on Tuesday next week, to which I will be going with him. Here he wil get to speak to other patients and medical staff.

I agree that it does not seem normal or right for someone with jaundice and dark urine to have to wiat this long to be seen by a specialist. Maybe it is different in the US and patients are seem much quicker than here in the UK under the NHS. We cant afford private healthcare and have to rely on the NHS system and how it works.

Marion, thank you so much for your thoughts and kind words. I try to do my best for my parents in looking after them, I love them both dearly and would do anything for them.

As far as Dads jaundice being related to his liver function or the stent possibly being clogged, I dont know as we have not been told. We were told that the stent being clogged was a possibility, but not that it actually is. I sincerely hope that if the specialist thought it was clogged, or a good chance that it might be then Dad would have been admitted to hospital by now. Hopefully the meeting on the 26th will clear up a lot of issues. I agree with you about exploring all the possibe options as to further treatment and I know that this is something that Dad will want to do. But right now it seems like all of that is on hold until the 26th. I think what I am going to do is the next time dad feels unwell, sweating etc, I am going to call the GP out and see if he can be admitted that day.

Danielle, thanks for your kind words and for sharing your experiences with Jim and the troubles he has had with his stents. Does Jim have a plastic or a metal stent? My dad has a metal stent inside so I dont know if this has anything to do with him not being admitted to hospital as quickly as we hoped.

It sounds like you are doing a great job in looking after Jim and getting him some good and quick help. Are the Mayo clinic and where your oncologist based 2 different hospitals? I dont know too much about how the US system works but I understood it to be insurance based and this determines levels of treatment etc. Much differnt from the UK where most people are treated under the NHS, National Health Service. As far as trying to bring forward dads hospital appointment, I guess only dads GP or Macmillan nurse could really do that. Kicking up a bit of a fuss seems to have worked for you and Jim and maybe that this is something I will end up having to do.

Thank you all once again for your thoughts and posts, they are helping me a lot. If in my earlier posts I have given the wrong impression about anything then I apologise for that. I’ve just re-read this post and realised how long it is and i apologise for that also!

I wish everyone the very very best.

Gavin