Update on my Dad
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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
Gavin,
its good news to hear about your dad…happy to hear that he is able to do the things that he enjoys and that he is feeling better. Keep the great news coming and give your dad and mom our best wishes….ronHi Gavin, that’s great news about your Dad, how wonderful to hear. You’ll have to keep encouraging your parents to find some humor and peace in the new transition, and get them out there to enjoy the summer weather…. it’s not going to be easy! Thanks for the update and for sharing the wonderful news.
-Tess
Gavin,
Your dad sure has been through a lot (and you and your mom, too), so it was great to hear your happy news. May he continue to feel fine and have an appetite, and play the piano, for a long time to come! Thanks for the good news,
Joyce MGavin…..your Dad is quite a talented man. I am happy to hear that he will be able to do the things he loves doing so much like, playing the keyboard. Has the doctor given you any explanation as to why the jaundice and dark urine has disappeared? What great news….Hopefully, the weather will cooperate and you and your family will enjoy some sunshine without a sunburn of course.
MarionThanks for the update, Gavin. It’s inspiring to hear good news from you. I hope you find a nice place for your folks to stay while the work in being done.
Gavin, how many PDT treatments has your dad had. My husband just finished his 2nd PDT treatment at UVA in Charlottesville, VA. He is doing them every 3 months. When he was in for Photofrin shot – pre PDT we met delightful lady in her 80s who was having her 11th treatment. She was going great.
Hope your dad continues to do well.
Jan
Gavin,
It sounds like your dad is a real trooper and things are going good. I hope you find that caravan and they can enjoy the summer and see it as a vacation instead of hanging out while building work is being done.Kris
Hi Everyone,
Thought I would do a quick update on my dad seeing as he saw his specialist yesterday. Tuesday is the day he goes to his day care group and he has been going for 3 weeks now and he loves it. Yesterday they had set up a keyboard for him to play for the group in the afternoon, but he couldnt do so as I had to pick him up early to go to the hospital. Hopefully he will get to play it next week as he loves playing the keyboard. He used to be in a band here in the 60’s and also played local clubs in the 90’s in a duo, so I know he would really enjoy that. He goes to day care once a week and it is really helping his mood and confidence to be able to socialise with others in the same boat as him. The centre is staffed by specialist cancer nurses who see the same people every week so they seem to be able to build up a great rapport with them and can monitor their health. My dad gets a blood test every week there so he is happy about that.
Well we saw the specialist yesterday and his first reaction was that he thought dad was looking great. He checked him for signs of swelling and found none so I take that as a good sign. His recent jaundice and dark urine is also gone so that is a great relief. He was also happy with dads weight and appetite, although dads appetite is definitely not a problem! He wants dad to stay on the same medication right now and to see him again in 3 months time. His last CT scan was end January so he should get one in July so we will see what shows up at the next appointment in August. Overall he seemed very happy with how the PDT went and the progress dad has made since last year. There was no talk of any further treatment yet so maybe we will have to wait and see what the next CT scan shows.
Overall dad seemed to be really pleased as to how it went. As I said, his mood lately is great and he hasn’t had any bad days for a few weeks now, long may that continue. He isn’t in any pain right now although he did manage to get himself a little bit sunburnt a few weeks ago during one of the rare days when we had some sun. He was sitting outside, not for very long at all and his arms turned red really quickly afterwards. He got tablets and cream for this and we were concerned that he still had some of the Photofrin in him and still may be extra sensitive to light and sun. We discussed this with the specialist but he said the Photofrin is completely out of his system by now, but he will be taking extra care outside, even when the sun doesn’t seem that strong.
What is stressing my parents our just now is the upcoming building work. The bathroom and kitchen have to be completely ripped out and replaced due to the water damage from above and they will have to move out of their flat. They cant stay with me as my flat is tiny and is 3 floors up and they cant manage the stairs. So we have to find somewhere for them to stay for about a month whilst the building work is done. It’s either a hotel or a caravan somewhere but they dont much fancy being stuck in a small hotel room for a month so hopefully we can find a caravan park near here soon. At least it’s summer so hopefully they will get some decent weather!
Best wishes to you all.
Gavin
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