KP

  • Hi, I was on the VTD (Velcade, Thalidomide and Dex) and I think it was by the third cycle I was experiencing symptoms of peripheral neuropathy, particularly in my legs and feet. The Consultant reduced the dose of Thalidomide by 50% for the last three cycles so the symptoms did not get any worse.

    I completed the six cycles in June and although I…[Read more]

  • kp replied to the topic Stem Cell treatment in the forum Treatment 6 years, 11 months ago

    Hi All,

    I was discharged on Friday (three days short of a month in hospital) because just as they were saying I could go home I got a chest infection which was treated with IV antibiotics and added a week to my stay.

    It was difficult at times, particularly because I got severe mucositis despite sucking ice pops and ice lollies before, during and…[Read more]

  • kp replied to the topic Relapse in the forum Treatment 6 years, 11 months ago

    Hi Susie,

    I have just come out of hospital after a stem cell transplant. was a tough month but doable and now I have a couple of months recovery to get through. can’t believe how tired I am.

    I am sorry to hear that your PP’s are slowly rising after 6 months remission. I agree with the previous poster, rant and rave as much as you need to and I…[Read more]

  • kp replied to the topic Pessimistic Consultant ? in the forum Treatment 6 years, 12 months ago

    Hi Peter,

    So much good advice and helpful information in the previous posts.
    I am going in this week for a Stem Cell Transplant and hoping for a longer and deeper remission as a result. The Doctors do have to explain in great depth the potential outcomes for each step of this unwelcome journey we all have to take with a MM diagnosis. Which I have…[Read more]

  • kp replied to the topic Stem Cell treatment in the forum Treatment 7 years ago

    Hi Mervyn, thanks for the link, I have had stem cells harvested, have a wig ready and waiting, and am waiting for a date to go in for transplant so am absorbing information from as many sources as possible. I feel anxious and apprehensive but I know I will get through it. The carrot is a deeper and longer lasting remission.

    Keep well

    Karen

  • Hi Mike, sorry to hear that Thalidomide stopped working and hope VCD working for you.  The steroids do cause so many problems.  Hoping next blood results are positive for you.
    You have been an inspiration and your helpful, informative posts gave me, and I suspect many others, invaluable support at a time when I felt overwhelmed by the enormity o…[Read more]

  • kp replied to the topic Zometa side effect ? in the forum Treatment 7 years, 2 months ago

    Hi Susie,

    I find I feel generally unwell after the Zometa infusion for a few days and it also upsets my digestive tract. This last cycle the Nurse let it run through in five minutes and two weeks later I am still not right. Makes me wonder if it is worth it?
    Cheers

    Karen

  • Hi All,
    Just about to start 6th cycle of VTD and have tolerated treatment reasonably well although the side effects create their own challenges. I have had a good response and have been referred for consideration for a SCT.
    So next big hurdle we have to face is the decision on next steps for treatment. Other people posting on the forum seem to…[Read more]

  • Well folks, I am in the middle of the second cycle of VTD as the MM went active just before Christmas. Coping with the treatment fairly well although it has been an anxious couple of months. I have a new full time job waiting in NHS clinics!!!

    I don’t visit the site often at the moment but do hope everyone is doing OK.

    Best wishes

    Karen

  • kp replied to the topic Smouldering myeloma in the forum Newcomers 7 years, 8 months ago

    Oh dear Mike, the most likely explanation is my misunderstanding and misinterpretation of what was actually said to me…I still feel like a rabbit in the headlights and so dis-empowered when I go in for a monitoring appt so probably mis heard.

    Thanks for your response, it is much appreciated.

    Kind regards

    Karen

  • kp replied to the topic Smouldering myeloma in the forum Newcomers 7 years, 9 months ago

    “so who’s to say you won’t grow old and penniless because you spent all your pension money having holidays and enjoying life thinking you wouldn’t need it for later?”

    This is very true Rebecca, thank you for a smile moment on a damp and dreary morning.

    I think we should all live our lives to the full and enjoy every day.

    I try to ignore the w…[Read more]

  • kp replied to the topic Smouldering myeloma in the forum Newcomers 7 years, 9 months ago

    “so who’s to say you won’t grow old and penniless because you spent all your pension money having holidays and enjoying life thinking you wouldn’t need it for later?”

    This is very true Rebecca, thank you for a smile moment on a damp and dreary morning.

    I think we should all live our lives to the full and enjoy every day. There are medical advan…[Read more]

  • kp replied to the topic Smouldering myeloma in the forum Newcomers 7 years, 9 months ago

    “so who’s to say you won’t grow old and penniless because you spent all your pension money having holidays and enjoying life thinking you wouldn’t need it for later?”</span>

    This is very true Rebecca, thank you for a smile moment on a damp and dreary morning.

    I think we should all live our lives to the full and enjoy every day. There are medic…[Read more]

  • kp replied to the topic Smouldering myeloma in the forum Newcomers 7 years, 9 months ago

    <span style=”font-family: Arial, Oswald, ‘Helvetica Neue’, Helvetica, Helvetica, Arial, sans-serif; line-height: 19.5px; background-color: #fbfbfb;”>”so who’s to say you won’t grow old and penniless because you spent all your pension money having holidays and enjoying life thinking you wouldn’t need it for later?”</span>

    This is very true Rebec…[Read more]

  • kp replied to the topic Smouldering myeloma in the forum Newcomers 7 years, 9 months ago

    Hi All,

    I too felt more settled after reading Mike’s post, particularly after appt this week when my status was described as “relatively stable”.

    Just to note how difficult people find it before their appts, my husband and I (along with the rest of my family) are so anxious and twitchy and frightened. It is such a relief to be told , see you…[Read more]

  • I have to agree I would wish to smoulder forever, but don’t want to wait for treatment until there are signs/symptoms organ damage.

    I have found the article online but will take a couple of read through’s to grasp the key concepts so thanks to Mike for the helpful précis of updated criteria.

    I wonder what my Consultant will make of this and…[Read more]

  • Hi Susie, I am monitored 6 weekly at present, last PP was 39. It is an awful disease and different for everyone which I think makes it challenging to manage.

    I was only diagnosed in April this year so still trying to come to terms with it all.

    I haven’t had a bone marrow biopsy as blood tests don’t show any end organ damage.

    Hope you are t…[Read more]

  • Hi Susie,

    Hope all goes well for you on the second cycle and not too many side effects.

    I had a monitoring appt recently and numbers up again, but no signs of any end organ damage and I feel OK in myself so continuing on the wait and watch protocol for asymptomatic.

    It is so hard to define ” fatigue” isn’t it as sometimes I am really tired by…[Read more]

  • Hi Susie, hoping you are doing OK and coping with the treatment regime.

    Kind regards

    Karen

  • Hi Jan, what an awful experience for you both, I am not surprised you have been scared and hope he is getting sorted out by the Doctors.

    Do you think that you could use some counselling? it must have been so traumatic for you and might help to “talk it through”

    Hope things start to improve

    Kind regards

    Karen

     

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