[mhnevillParticipant]

Hi Bridget,

I have been wondering how you are. Often lift up a little prayer for you. Sorry the new treatment is having these strange side effects, but see you are coping with your usual fortitude. Have you lost your hair again this time? Not the weather for it!

How did you know the PP levels weren't accurate?

Do hope things get better over the next rounds and that you are feeling much more alert for Christmas.

Love Mavis x

[brochoParticipant]

Good Morning Mavis thank you for your kind words It is a nuisance having to write off a whole day following the Bendamustine but I am going to discuss it at clinic and see if there is a solution No my hair is still here it would be very chilly without it! The extra pain which turned out to be a tumour showed despite low pp levels that myeloma was active again . Ihope you are well and looking forward to christmas I certainly am love Bridget x

[RozParticipant]

Hi Bridget,
Sorry about your spooky experience. Michael got took off Thalidimide, he kept on the treatment but they took that off, it caused him to have dizzy spells and he fell over once.
All my fingers and toes are crossed for you. Having seen the treatment first hand I can only say your a star for fighting this bloo– thing like you do.
I wish you all the best for now and the future
Love Roz xx

[susannahParticipant]

Hi Bridget and Tina, Michael hasnt had any treatment for a month his plateletts are still to low, we go back this Friday, we asked why they were still going down when he hasnt had any treatment apart from dex, she says it is such a powerful drug it stays in the system for weeks.

Regarding the Thalidomide Michael has felt much better since he came off it,
he still gets very tired mid week, but we think this is when he is coming down off steriods.
love
Sue x

[brochoParticipant]

Hi Sue I am glad Michael is feeling a bit better since stopping Thalidomide. I think because it is a drug which has been ferquently used and I hadnt heard many negatives other than PN I underestimated its strength. It totally knocks me out but this may be partly due to the myeloma being active as well The other aspect for me is I have had about 4 years of chemo in one form or another and this is taking its toll on my body But its not something I can be choosy about , its a case of doing what has to be done to survive Yesterday was a bit dramatic and also a bit of a fright! As usual I went to town to collect library books for my mum. Although I am full of cold it was only a short trip and I didnt think twice. I couldnt park right outside the library and had to walk the length of the car park , hardly a marathon,by the time I got to the door I was so breathless I thought I was going to collapse The lovely librarian guided me to a chair, although I couldnt even speak , she was brilliant ! It took me a good ten minutes before I got some control of my breathing, to be honest I should have sat still for longer but I was so embarassed I trundled off!Needless to say after a few minutes I was gasping again The same lady came straight over to help bless herAt this point I thought I would be carted off in an ambulance which I did not want Luckily after a while I began to feel betterand got home as quick as I could I dont have a raging infection but it is ironic that the common cold nearly finished me off , a bit over dramatic but thats how it felt ! So no Bendamustine for me this week I do not want to risk feeling terrible again on top of the symptoms of this stupid cold There is one person who is very glad , my eleven year old grandson who is staying on Friday night , he has always spent one night of the weekend with me since he was born and he has really missed it , me too! Sorry that ended up being a long and boring post love Bridget x

[susannahParticipant]

Hi Bridget Your post is not boring at all,a bit long (only joking) Michael seems to be in the same boat as yourself, he has also had none stop treatment for the last 4 years and he has been on Thalidomide several times, so it could be over use. Hes back tomorrow to see if he can have his Bendamustine, will let you know how he goes on.

Take Care
love Suex

[mhnevillParticipant]

Hi Bridget

I'm still routing for you!!! Sorry you had such a bad experience. It does seem daft what floors us, isn't it.

Maybe your body is saying it wants a partial rest from all this toxic stuff. It sounds, by what you wrote that you are still on steroids. Whatever, I hope it is enough to keep anything more sinister at bay. Hope the bone pain is still under control.

I hate to say it, in view of all your problems, that I feel better than I have for a couple of years. I go to my Consultant on Monday so hope my blood results confirm this.

Hope you and all the family have a lovely Christmas. Hope someone is helping out with all the food preparations.

Much love.

Mavis x

[TinaParticipant]

Hi Sue / Bridget,

Bridget, you are so naughty venturing out with a cold! I really hope you feel better soon.
Sue, Patrick's consultant took a risk with our consent and continued with Bendamustine depite his low platelet counts. Her view was that he could be given as may platelets as he needed and that it was the myeloma needing treating most. I am thankful to her for the resulting extra year with Pat. He did have transfusions regulary sometimes up to three times a week until the myeloma settled down.

Good luck to you both
Tina XX

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