[MariParticipant]

Hello all, just a quick update. What with Christmas and the bank holidays Steve was not due to start the velcade regime until 3rd Jan. This morning his consultant phoned to say he felt we should get underway sooner rather than later and he was leaving a precription for fours days dexamethasone for him at the hospital pharmacy. Whoop! Four days that include Christmas Day, however we are pleased that the doc is on the ball enough to get things moving. Steve dreads dex because he had dreadful anxiety symptoms with it last time. I guess he may also have trouble sleeping without the thalidomide to offset it a bit. Mind you a couple of glasses of wine or so, and a good Christmas lunch should help him to nod off! I checked with the pharmacist that alcohol was ok!

While I am here let me take the opportunity to wish you all a happy and peaceful Christmas and a hopeful 2012 ahead of you. My thoughts are especially with those of you who have had disappointing news or have lost loved ones this year. I hope you all find love and peace this Christmas time,

Much love to all,

Mari xxx

[BADGERParticipant]

Dear Mari

I hope Steve does not get too much dexitude but its good his consultant is on top of things I wish you both a good Cristmas and a Healthier new year
Love Jo x

[eveParticipant]

Hi Mari
Dex for Christmas,at the least Steve should have a good appetite,and be on a bit of a high,a little bit more energy and less sleeping,that,s what I call a Christmas present from the nhs.

Hope the Velcade works for Steve,it seems to have worked for Slim,he has started on a tablet to help him sleep at night,sorry we did not do it earlier as he had his first full night in bed for a long time the Velcade effects his legs so does not sleep well when lying down.lesson learn,t.

have a nice Christmas love Eve

[MariParticipant]

Dear Jo and Eve,

Thank you for your kind words and good wishes. I hope you both had a good Christmas. We had the children home and some good friends came over in the morning and we all cooked lunch together. It was a lovely day. Dex seems to affect Steve in a very strange way. He gets very lethargic and needs to nap frequently, he does not get the high but nor does he get the mood swings either. It also gives him terrible bloating and looks about 6 months pregnant! Does anyone else have similar problems?

Eve, did Slim have his velcade subcutaneously? I am not sure if this is a good idea or not. Dont want to risk and further neuropathy for Steve but want to be sure that it is as effective as IV velcade.

Mari

[eveParticipant]

Dear Mari
Glad to hear your Christmas was good,Slim slept through most of Christmas,but it was still better than last year,wish I could get back into reading,to be able to stop thinking about this myeloma.

No Slim did not have sub cut,when I asked about it,was told it was effecting some people,also has not come to our hospital yet!!!!!
Its very hard to know if Slim is more lethargic as he has never had good health from starting Myeloma,and as he has been very ill any improvement is a bonus.Although they are talking remission,the constant bone pain is always there he has tried twice to cut pain killers,but cannot,I know he has a high pain threshold,so I am assuming its all bone pain,this does take its toll,and effect his well being on a daily basis.

Slim does have a small bloated stomach everything seems to have settled on his middle,but if you consider that he has lost 5 inches in height,that has to settle some were,his upper body is very noticeable small when sitting in the car,against his very long legs!!!!!!!{ 6ft 1 to 5 ft 8 } 5inches lost on spine.

Slim did not have the mood swings,so much on Dex but it is taken different with Velcade,before on CTD it was 4 days in a row,with Velcade he takes it same day as Velcade and next day then day off then Velcade and Dex and Dex next day,part of Trials.
His food taste changers on a daily bases,when he feels ok he eats well,but has never regained his good appetite,so its small amounts as many times as possible.

Hope this is some help,on the whole Slims health has improved,but all those months ago he was so ill,every one seems to be amazed that he has done so well. love Eve

[brochoParticipant]

Hi Mari I am glad you had a good christmas. Dex is such a strange drug and it amazes me how differently we all react to it . I did get lots of bloating and water retention too and now always take ferusimide The other unfortunate side-effect for me is excessive wind , very embarassing ! I think the lethargy is something you are stuck with due to Velcade , I know that for me both Velcade and Revlimid made me very lethargic and tired. I hope the side-effects dont get any worse for Steve ,ost importantly it does the job of getting mm under control Heres hoping 2012 brings a very long remission ! lots of love to you both Bridget xx

[MariParticipant]

Dear Eve and Bridget,

Thank you for your good wishes and really helpful comments. It never ceases to amaze me how differently people can react to both this horrible disease and the treatments for it. Steve was supposed to start velcade today but as he has another ear infection he is back on antibiotics and they would not give him the treatment, so we are waiting until next Tuesday now. His bone pain is getting worse especially in the ribs and sternum and I know he is worried about this. His MM seemed to take hold very quickly last time around with disastrous circumstances. His consultant is sending him for an MRI to check it out so hopefully that will check out any problems that are starting up. The MM is ceretainly affecting his immune system as this is the second ear infection in three weeks. I guess we just have to get him through this. It seems to me that MM can so often be a series of crises resulting in treatment and then a good spell for however long after. We just have to get through the bad time and make the best of and enjoy the good times. I am so glad that I have this forum to share my feelings with all you great people,

Much love,

Mari xxx

[tomParticipant]

Hi Mari and Steve

Well am pleased that Steve could drink on the combination of drugs and to be honest I never asked if I could :-0 Just thought if I shouldn't then they would have told me he he so it was out with the Vodka and red wine 😎 and here I sit in remission so it dint do me any harm 😎

Hope Steve's ear is soon better and back on treatment.

Love Tom "Onwards and Upwards" xxx

[MariParticipant]

Hi Tom,

Thanks for the good wishes, Steve is better and has had two lots of Velcade so far, plus the dex that goes with it. He is having sub cut injections rather than the old intravenous stuff cos its supposed to give fewer side effects and so far so good but probably a bit too early to comment as he has only had two injections so far. He is playing a gig with his band tonight, first time for ages and he is excited about that and now he has walked into town, stark staring bonkers as its below freezing here, brrrrr!
Being a kentish lad he favours beer but with the dex it does bloat him up something awful maybe i should get him on the vodka instead?
Hope you continue to keep well,
Love Mari x

[tomParticipant]

Hi Mari and Steve

You are more than welcome and am pleased Steve is better.

I know how Steve feels liking the beer but it does bloat you up with the treatment and I found Vodka was better for me or the odd bottle 😀 of red workes for me also.

I do my Vodka with Lemonade but only a little bot of lemonade 😀 and a good glas of vodka 😎

Love Tom "Onwards and Upwards" xxx

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