Hi Wendy

Thanks for your very informative reply. Frank is only on 100mg of Thalidomide and had this bad reaction, I would hate to see what he is like if he was on 200mg!! We will see what happens tomorrow but I hope they reduce the doseage and then increase it gradually. My concern Wendy is that Frank has a history of drug intolerance and I…[Read more]

Thanks Vicki

I really appreciate all the support this forum gives. I feel a bit more positive as I told Frank what David had said about PN a d he is asking some questions. Which is a start. Dreading tomorrow but I know what you mean about the worry. Good job I like football as well. It has only started and one of my daughters in law says its…[Read more]

Hi All

Dai after reading your post I realised that I was angry as well. Frank had gone to bed but I went up and told him he was going to listen to me. I told him about all of the posts and of the information that I had gotten. And he LISTENED and asked questions. One of the questions was how long have you lived with PN? Helen I asked him if he…[Read more]

Thanks Jo, Eva and Helen

I really appreciate your replies and have taken on board all that has been said. I really don't know how to describe Frank and his attitude to this bloody disease. When first diagnosed he told the family that he wanted no research done on this disease and any info that he needed to know his doctor would tell him. He…[Read more]

Dear Tom, Dia and Eve

Thanks for support and tips. Really don't want him to come off Thalidomide so I will keep in mind Dai what you said. Will have to wait until Monday to see what they come up with.

Thanks again

Jean xx

Hi Vicki
Glad to hear that Colin is out of hospital. Frank says he feels like some aliens has taken over his body. He's going to ask for CDT to be reduced. Iif it's reduced shurely the medication won't work as well. More questions to ask consultant.

Best wishes to you and Colin
Love Jean xx

Thanks for the thoughts and good wishes Eve. Quite understandable about you not having time to post. You have such a long journey to the hospital. We are fortunate as the hospital is not far away so if we have to wait for medication or long wait we just go Home and then go back again.

First week over. Thought Frank had handled it quite well…[Read more]

Hi Eve

Glad to hear that Slim is getting home. Hope he goes from strength to strength.
Best wishes to you both

Love Jean x

Hi Ann

My husband has just finished 1st week of CDT and he is saying that things taste different. The worse thing to him is the Water- and you know he has to drink a lot. Have bought bottled water to see if it made a difference. He says it doesn't taste as bad. Hope things improve

Love Jean x

Hi Jen

Sorry you have to join us but welcome. Like Alison I can't answer your questions but someone here will help you. My husband was diagnosed 6 years ago but only started on CDT last week. He has two lesions on his ribs. We saw radiotherapy consultant yesterday and she said that she didn't think that radiotherapy was necessary. Maybe…[Read more]

Hi Jo

Glad that you are having a bit of a break from appointments and doing well. Do you live close to the hospital? We are fortunate that it inly takes about 20 minutes to get there. So if we have a long wait we just come home.

Frank has been on lots of medication, injection and Dex – tomorrow last day for Dex till Friday. Not sure if…[Read more]

Hi Eve

So glad that Slim is home and hope every day there is a big improvement. Take care
Jean xx

Hi Chris

Sorry you have had to join us, but there is great bunch of people here. My husband started CDT yesterday after smouldering for nearly 6 years. He has to take Dex for 4 days – this is second day and I,m wondering how long it takes the side effects to take in. Frank has 2 lesions on his ribs and is going to see radio therapy consultant…[Read more]

Thanks for your reply Vicki. We were at hospital today and told all about CDT. The side affects scared the life uut of me. Have to pick up the medication tomorrow and start this journey. Then radio therapy consultant on Wednesday. Didn't realise that it is up to that consultant as to wether Frank gets te radio therapy. I just want the pain to go.…[Read more]

Hi Vicki

I found your post recradio therapy very infotmative. My hubby Frank, after smouldering for neary 6 years is starting CDT tomorrow for 6 cycles. I am so scared! They also found 2 lesions on the ribs and has appointment for radio therapy consultant next Wednesday but consultant says he would only need 2 blasts max. Frank has very…[Read more]

Hi Paul

Fingers and everything else will be crossed that treatment will work. Have a brilliant weekend – enjoy the sunshine

Jean

Dai you are okay and ready for tomorrow and I'm so happy for you.

Love Jean xx

I am over the moon to read you news Dai. You and Janet deserve something positive. Really great.
Love Jean xx

Hey Scott

Agree it was a good day. But you missed one event – rugby. Broken hearted that Ulster didn't win but there again they were terrible. Dont think they could have played netball!! Frank fell asleep towards the end of the Chelsea match and would not believe me when I told him that Chelsea had won. United loosing!!! We have a split…[Read more]