MANDY PHILLIPS

  • Morning Harmony
    Hey you have seen my post am not easily offended nor easily upset, a prayer or three is good I am getting them from all faiths to be fair I have brothers that are Catholics and Protestants and one that is a Mormon so I have all bases covered like us all we need more he he onwards and upwards is a great ending to the post like all…[Read more]

  • tom replied to the topic Whoops! in the forum Treatment 10 years, 10 months ago

    Morning Andy

    Yes as you know I stalk you on face book and at times on twitter (don’t use that one much) and I am pleased you are sorted this darn Mm keeps throwing unknown and unwanted infection at folk that have other things to be getting on with, those infections really should be having a word lol.

    Stay well and yes everyday is that gift, we…[Read more]

  • Double post again

  • Hi all

    Had my 2nd Velcade injection today and my Dex this morning, no bloods today but I got my bloods wrote down today so take a look and let me know what it means lol

    20/01/14
    HB 13.4
    WBC 4.9
    Plts 2.58
    Neuts 2.58

    27/01/14

    Hb 12.5
    WBC 4.2
    Plts 237
    Neuts 2.47

    Now I ain’t sure if decimal point is in the correct place lol.

    Tom onwards and upwards x

  • Hi Sarah

    Yes you are my “posh” stalker lol. Ye I know I can do it it’s just giving me an iccle bit of a curve to be fair and we all need curves lol.

    Love iccle ole me onwards and upwards xxx

    Ps tell the Old Boy well done and no wrinkles or creases in the clothes lol xx

  • Hi Peter

    I try to look for positive than negative ,We have all been were Dusk is angry and confused,I think your story Peter is a an excellent example,over 10 years,not great remissions and bone damage and you are still here.

    Information and hope is what this forum is about,but there also has to be space for people who need to air there…[Read more]

  • tom replied to the topic Are we new ?? in the forum General 10 years, 10 months ago

    Hi Jo and welcome back to the forum, it’s still playing up with me at times not posting half postin and blooming double posting, hope your ok Jo and it’s not too cold for you

    Love Tom onwards and upwards xxxx

  • eve replied to the topic Low platelets in the forum Side-effects 10 years, 10 months ago

    Hi Jo

    Lovely to hear from you,I have been thinking about you and wondering what was going on specially with the Damocles falling a little bit.

    Thank you for information on Velcade I did not know about the second batch of Velcade only that it can be used again on patients who have responded well first time round,all good news.

    How are you Jo??…[Read more]

  • Just wanted to say good luck to everyone,although it’s a big thing for the individual having this procedure ,ita an every day thing to the staff,expect to be emotional and do not worry if you have an odd accident,nothing they have not seen or done before.

    It’s a bit lonely in isolation,so make sure you have home comforts around you,this is the…[Read more]

  • Dusk if you are a Myeloma person,please think about putting you name plus picture,and explaining your story,because that,s what this site is about,helping people!!!!

    Stop trying to scare people,this Myeloma is scare enough,specially for people who do not prefer to know a lot about it,it’s there choice,educate yourself by all means learn as much…[Read more]

  • Hi. Dusk

    Well I would not call my husbands journey great,far from it,I also do not think being late diagnosed determines how long you will live,it just means that you have far more damage to your bone structure,it’s getting the Myeloma under control that is the hard one and that depends on what type of Myeloma you have and how aggressive it…[Read more]

  • Hi Judy
    Welcome and sorry to hear about your pain with Velcade but am pleased they soon sorted you out. Where are you now in your treatment Judy ??.

    Maureen just to let you know am still on the vodka and red wine lol.

    Liz Elaine is doing great ta and ye she has hawk eyes ha ha, but am pleased about that as am sure I would miss something out he…[Read more]

    • Hi Tom

      I’m good at the moment. Been on Revlamid as a maintenance drug for almost two years and feeling the best I’ve felt since this all started ten years ago. X

  • Can I join in this post,as a few on here realise what my husbands position is at present .

    I think more could be done by GP to get a quicker result,and yes I know it is rare plus back ache could be a number of things!!!!,but a simple blood or urine test should be done as routine!!

    The facts concerning treatment,NICE has 3 treatments on Board…[Read more]

  • eve replied to the topic Low platelets in the forum Side-effects 10 years, 10 months ago

    Hi Peggy

    Thank you very much for replying and specially for the information,Slim is a little bit different from you but I am assuming you had platelets every time you had Velcade?????

    We are going to the Royal Marsden in Sutton this coming Tuesday,Slims consultant has arranged a second opinion,
    The problem Slim has is that after 3 recommended…[Read more]

  • eve replied to the topic My Remission is over!! in the forum General 10 years, 10 months ago

    Hi Mandy

    You must be feeling awful at the moment,but it sounds if you were just waiting for your worst fears to be confirmed.

    I think you are doing the right thing getting a second opinion,check if your consultant is a myeloma expert rather than just a haematology expert,in theory you are going to be an unusual case,you do not mention your…[Read more]

  • Well double post and some missing

  • Hi Carol
    Bragg away young lady that’s something that should be shouted from the rooftops and you have some spare I will need to do another harvest

  • Hi Carol
    Bragg away young lady that’s something that should be shouted from the rooftops and you have some spare I will need to do another harvest

  • Thanks you all.

    Had first one done today and that consisted of Bloods taken, Zometa infusion,10 iccle Dex tabs, oh and one amaprasil (check spelling lol) and my Subcut Velcade, The Velcade will be given every week, the bloods every three weeks, the Dex and Amaprasil to be taken once a week. jobs a good un.

    Chris when my cells were collected in…[Read more]

  • Hi San

    So sorry about your mum,I do not know which is easier knowing it’s going to happen or not.

    I hope you and your family find some peace at this sad time,no more pain for your mum,I also hope you were able to spend some time with your mum doing normal things with out the myeloma being up most in your thoughts. Eve

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