[jmsmythParticipant]

Thanks Keith

It is the para protein. She was always please when it came down. But the decline has been dramatic and she said there was something going on. I emailed Ellen to ask her. So will see what she says.

Thanks
Jean

[jmsmythParticipant]

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 just pray that this does not manifest itself at this crucial time. He is not sleeping but his form is good. Frank is one of these people that is always in control and this feeling that Thalidomide brought on, I think scared him.

Thanks again and will let you know what happens tomorrow

Love Jean x

[jmsmythParticipant]

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 doing her head in.

Thanks agin

Love Jean x

[jmsmythParticipant]

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 felt that his 'body was out of control' and he said that was it exactly. We had a good talk but I didn't tell him how scared I was, I couldn't put that on him. I do feel a bit easer now. Thank you all for your advice and support

Love Jean 🙂

[jmsmythParticipant]

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 has great faIth in her. I am the one who asks the questions. He is a very strong willed man who does not suffer fools gladly and his way of dealing with this has surprised me for 6 years since diagnoses. I get information from the forum and sometime he listens and sometimes not. When he phoned the helpline this morning they told him to stop the Tahlidomide right away. He had stopped it yesterday after reading the information leaflet he had been given on the drug,as it also stated to stop it immediately if presented with these side effects. Although he still has the pins and needles in hand and feet he says he feels so much better and I have to say he's in good form, as he spent most of the night shouting at the football players on Tv. I think he tries to protect me – by keeping from me exactly what is going on with him. I broached the subject tonight of what Dai, Jo and Eva had said about the treatment and about "whatever it takes". He said that there was no way that he could live like that for the next 6 months. I suggested asking for drug to be reduced as I am aware of its success but he just shrugged and said he would see what Monday brings. I am worried sick as I do know about Revlimid but I asked his consultant about it and was told it was only given in trials, and don't know what it can be replaced with and if it would do as good a job as Thalidomide. He has a history of drug intolerance, having bad reactions to certain antibiotics. Not sure if it is relevant,

Thank you all so much for listening to me and it's good to know you are all there. Will let you know how it goes on Monday

Love Jean

[jmsmythParticipant]

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

[jmsmythParticipant]

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

[jmsmythParticipant]

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 as he seemed in great form. We went out for dinner tonight ( first time out in weeks) and he said that he is going to ask for medication to be adjusted as he feels like aliens has taken over his body and he's light headed. Going to consultant next Thursday. So see what she says. Have a safe journey home and hope Slim is soon feeling better.

Love Jean x

Ps Eve Bridget in hospital she has shingle is her eye. She says she looks like a battered woman. xx

[jmsmythParticipant]

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

[jmsmythParticipant]

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

[jmsmythParticipant]

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 sometime down the line but she hoped that she would never seem him again!!

You will get a lot of support on here and there are quite a few who are very knowledgeable about this bl**dy awful disease so ask whatever you want. It is also a great place to rant and rave.

My best wishes to your dad
Take care Jean

[jmsmythParticipant]

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 side effects takes time to manifest themselves, but his mood has been great, the only effects so far are water tastes terrible and he is getting hiccups all the time! We are off to Radio therapy on Wednesday to see if they will zap the two lesions. I was a bit cross at the hospital as the registrar told us that the lesions were small only, 3mm. But when we saw consultant she said the info was wrong the lesions are 3cm! So will see on Wednesday.

Yea got away to Spain for 10 days so glad we did as it will be some time till we get away again. Hope you are enjoying the long weekend. Pity about the weather. I have come out in support of Frank and off the alcohol!!!! Least said about that the better.
Take care and keep well Jo
Love Jean x

[jmsmythParticipant]

Hi Eve

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

[jmsmythParticipant]

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 on Wednesday to see if they can be zapped. Is your husband going to have SCT? Frank will if all goes well. I hope your hubby goes through it with little trouble.

Take care love Jean x

Hi Jo how are you. Hope keeping the best. We have starts on this CDT journey and I have to say its scaring the life out of me.

Keep well love Jean xh

[jmsmythParticipant]

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. Thanks agai Vicki, hope Colin is feeling a bit better 😀
Jean x

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