[PatGParticipant]

Good morning all,
While I follow all the posts on here and am continually encouraged by the optimism of you all in fighting MM and the treatments, I don't comment much as AL is different but the treatment follows the same lines. Neverless, I do think of you all and hope that all outcomes will be positive and that we all have many years of productive life in front of us.
I am going to London today for two days of tests at NAC with fantastic care provided. I have a taxi from Loughborough to London (and return) and an overnight stay at a Premier Inn all provided. They have a special scanner at NAC, the only one in the country, which will pinpoint exactly where and which organs the amyloids are attacking. We know my kidneys are affected so far and there was concern that my heart was also involved. Following a cardiac MRI this proved not to be the case thank goodness. But – following velcade, dex and cyclowhatsit yesterday I have been awake since 4 o'clock and suspect I will spend most of the journey down asleep. I will post the results when I get back on Thursday in the hope that it could just help someone else who may have to undergo these tests just as your experiences have helped me with so many baffling things in this journey. 'Til then
Hugs to all
Pat xx

[BADGERParticipant]

good luck Pat

I hope all goes well glad you are ok on the velcade I have just started second cycle not been too bad except it knocks out my red blood cells so i have had a couple of transfusions keep well and strong 😛
Love Jo xx

[PatGParticipant]

Hi Jo,
Sorry to hear about your transfusions. Hope that improves for you. All good news from NAC in that my bloods show I am responding well to treatment. The scan shows that the amyloids are centered in my kidneys (already knew that with function at 51%),also liver and spleen with no adverse effects to the last two organs yet. The follow up is monthly bloods sent by post and another scan in 6 months time. Depending on the blood results I may not have to have the full 8 cycles and could possibly get away with 6 (which would be nice). Alternatively if I stop responding they will change the treatment with my consultant here. End goal of course, as with MM, is to reduce the light chains and para-proteins which give the amyloid deposits chance to disperse and the organs recover.
Overall a very positive experience, but so much waiting around with a few tests the first day and the scan and consult the second day. Had I been feeling better there would have been plenty of time to explore a bit of London, maybe next time? I would advise anyone to try and get the one day appointments which make for a long day with travelling but would get it all over and done with quicker. You need to be feeling really well for that though. The scan was brilliant. I was dreading it as I hated the MRI scan I had on my spine, but their scanner is very open and you don't get the claustrophobic feeling you get with the MRI scanner. So all in all, feeling much better now that I know exactly where the little b's are. Why that should help I don't know, but it does.
Have to get ready for Christmas now, which includes a bit of decorating as we had a new central heating heating system fitted last week. What with that and my cooker giving up the ghost as well, I am just thankful to get back to normal. At least the cooker went before Christmas day, so that was a bonus! Let's hope we can all have a lovely Christmas, quiet or not, and a happier, healthlier New Year.
Love to you and yours Jo and to all fellow travellers.
Pat
xx

[BADGERParticipant]

Thanks Pat for your greetings

I am glad the experience was ok and you are reponding well fingers crossed for 6 cycles not 8 I am not doing to badly on the velcade but it does knock my Hb out so have had a couple of transfusions I hope you and yours have a lovely christmas and you can keep well keep in touch I have a big furry brown fleece on today i look like a fat bear HAHA 😛

lOVE jO X

[PatGParticipant]

Bears are good Jo. I am more like a stick insect at the moment! Going to get a couple of pairs of jeans in a smaller size today. Fed up with the ones I have at the moment hanging off my bum. Hope the velcade gets better love. You don't need any more things to put up with. Thought I would start on Xmas yesterday and made some sausage rolls. Big mistake! There are only 4 left now. Kev filled his boots the little gannet! Never mind, they are easy enough. Think I'll hold off on the mince pies though. Keep in touch Jo. You always manage to make me smile.
Much love
Pat xx

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