[jmsmythParticipant]

Hi Deirdre

Sorry thatmyou are now part of our club, but welcome from me. My hubby was diagnosed 6 years ago with smouldering MM no treatment only Zometa which he had for a year. June this year he started CDT and has just finished and is waiting for date for SCT and he has started Zometa again. Deirdre if you phone MMUK (no at top) and ask they will send you a Mm diary. I have one for Frank. It is very helpful – area to record bloods, treatment etc. I know Mm is different for everyone but when I go I'm interested in white blod cell count, haemaglobin ,neutrophils platelets and the para protein. But you can keep,a watch yourself on the bloods

My best to you and Cyril. Come on and ask any question they are a font of information!!

Take care
Love Jeanxx

[jmsmythParticipant]

Hi Kes and welcome from me to. This is the best place for you to be. We are all a friendly lot and there is a mindful of I formation, advice and friendship here. It is hard coming to terms with Mm. My hubby was diagnosed 6 years ago with smouldering MM and started CDT in June and has just finished his last cycle and waiting for date for SCT. Frank suffered terribly with shakes, he was very wobbly and memory was non existent while he was taking medication. About the third month the consultant cut thalidomide by half. He stopped his last med on Thursday and he said already he is starting to feel human again 😀

Keep strong and this is also a good place for a good rant!!!! Take care
Love Jean x

[jmsmythParticipant]

Hi Babs

You certainly have had a terrible time. But as you have read a out Slims journey you will,know that there is light at the end of the tunnel. Slim had a hard struggle but look at him and Eve now gallivanting all over the place – and New Zealand no less!!! So as Eve says book you Australia trip (when you get consultants permission) then you will have something to aim for

Take care and take it easy.

Hi Eve no worries about the two games I enjoy them. I am playing 3 games at the moment with a girl in Australia. Not long now before your trip hope you and Slim have a wonderful time. Will you have access to play scrabble ha ha. You will have much better things to do

Love Jean

[jmsmythParticipant]

Chris great news you are going home and that you are feeling good. I'm sure Lena is over the moon as well. Take it easy and take care

Love Jean

[jmsmythParticipant]

Hi Babs

Sory you had to join us but welcome. It is such a shame that you have only just found the site as this is a great place for support,advice and friendship. I hate the word carer, but I am carer to my hubby Frank. We are just waiting for a date for his SCT. How was yours are you in remission? Although I have been a member of the forum for some years but it is just recently that Frank started treatment and I am not up on all the terminology so I am on a steep learning curve..

Hope all is well with you and look forward to reading your journey

Love Jean

[jmsmythParticipant]

Hi Keith

I cannot answer any of your questions or give advice on Trials but just wanted you to know tha tI am thinking of you and hoping all goes well for you tomorrow and you get your questions answered

Love Jean x

[jmsmythParticipant]

Hey Helen

I thought the pesky cough had cleared up. Hope it goes soon. I know the whooping cough does last some time but you have had it long enough. It's time it takes a hike!!

Take care
Love Jean x

[jmsmythParticipant]

Hi Debbie

My husband was like Wendy. He's coming to the end of 6th cycle of CDT and for abouT 4 days after coming of Dex he was very shakey and could not drive. As to going on holiday while on treatment I would say it would have to be cleared by consultant but with Franks experience – out of the 6 months we had to go to the hospital on 5 separate occasions because he was so unwell. Thankfully they were all reactions to the medication. Everyone is different and i hope your dad has an easy time

Best wishes to,your dad
Love Jean
Ps welcome to the forum

[jmsmythParticipant]

Mavis what brilliant news to read. I am so happy for you. It's so great to read positive posting like this. Paul's passing was so tragic and such a shock. You will be in my prayers for a long happy remission. Enjoy every minute 🙂

Love and best wishes
Jean xx

[jmsmythParticipant]

Thanks Nicola and I'm glad to hear that your dads legs are back to normal. All these horrible side effects are such a worry. No sooner get over one and another rears it's ugly head We are off to see the consultant tomorrow. I really hope that this is the turning point for your dad and he goes from strength to strength

Best wishes to your dad
Love Jean x

[jmsmythParticipant]

Swollen fete have disappeared!!!!! Back to normal. I think it was the d**m steroids that was the cause. But just thankful l that they are both normal. Thanks all for advice and tips

Love jean x

[jmsmythParticipant]

Hi Polly

I agree with Eve. If it is possible to go home and go back. Franks drugs are ordered roundabout 11.00am and they are not ready till 4.30pm. We are fortunate that we live about 20 mins from hospital. One thing I will say is check the drugs yourself before you leave. Frank is just finishing 6th cycle and the drugs were never right. For 4 months the injections had not been ordered by consultant/registrar. Then they got that right and we checked drugs but when we opened one of the boxes at home instead of 12 tablets there were 2. Our daughter in law works In he hospital and she was able to collect them.
Hope you get through it with little side effects

Take care

Love Jean

[jmsmythParticipant]

Hello,Dai, thank you for the information, you went through the wars. . Frank has been on Clexane for the past 6 months. He is still,sleeping do not sure how he is now but yesterday the swelling in both legs had come down a bit. When we went to the Unit on Friday they seemed more interested in his low temperature. Saying that they did give him a thorough examination and were going to send him for a heart echo and lung tests but he had those about 2 weeks ago and everything was fine. They have brought his appointment forward and we are seeing he this Thursday. I will see how he is today and I will keep in mind everything that you have said. Thank you very much

On a lighter note I am glad that you got to walk your daughter down the isle and look forward to seeing some photos. I have been glued to the TV as our son took his wife to New York for her 30 th birthday and guess where -lower Manhattan. Was talking to him last night and he said it wasn't that bad and then on face book this morning he said that a building just down from their hotel collapsed. Have to wait a couple of hours till I will be able to ring him.

Thanks again Dai and I will keep a close watch on him. Hope you and Janet are in good form

Take care
Love Jean x

[jmsmythParticipant]

Hi Nettie I was asking Tom the same thing. Hope all is ok with him

Love Jean x

[jmsmythParticipant]

Hi Mary

Frank takes the chemo every Monday. He feels off all day Monday but by late Tuesday he is feeling better. It is the Dex that he suffers from. The dose was cut in half but it still takes it out of him. When he's on the Dex he doesn't leave the house for about a week – the chemo – about 36 hours. As you know everyone rects differently. Hopefully frank has had the last of the Dex.

Best to you and Charlie
Love Jean x

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