tmcintyre

  • tmcintyre replied to the topic New trial drug in the forum Treatment 4 years, 9 months ago

    Thanks,

    We’ll see how he gets on with his 3 cycles of <span style=”background-color: #fbfbfb; font-family: Arial, Oswald, ‘Helvetica Neue’, Helvetica, Helvetica, Arial, sans-serif; font-size: 13px;”> ixazomib. His consultant didn’t say he was on a trial although as you say, that drug is on trial, he just said he’d secured funding for it.  …[Read more]

  • tmcintyre replied to the topic New trial drug in the forum Treatment 4 years, 9 months ago

    Hi,

    My husband was diagnosed in December and has tried two different combinations of drugs which have not reduced the cells in his bone marrow. He is just finishing his first cycle of ixazomid which he is taking with Revlimid and Dexamethasone. He will have 3 cycles and has been told he is still aiming for SCT but has been warned he will be on…[Read more]

  • tmcintyre replied to the topic New trial drug in the forum Treatment 4 years, 9 months ago

    Hi,

    Can you tell us which drug it is?

    best wishes

    Teresa

     

     

  • tmcintyre started the topic Non Secretor in the forum General 4 years, 9 months ago

    We’ve had it confirmed that Dave is a non-secretor so although his bloods are now completely clear his bone marrow is showing 50% disease. So fortunate that his GP picked up something in a routine blood test and referred him to Haemotology back in December.  We are disappointed that he hasn’t conformed to the original plan of 4-6 months VTD…[Read more]

  • tmcintyre started the topic Non Secretor in the forum General 4 years, 9 months ago

    <p style=”margin: 0px 0px 16px; padding: 0px; border: 0px; font-variant-numeric: inherit; font-stretch: inherit; font-size: medium; line-height: inherit; font-family: avenirBook, Arial, ‘Helvetica Neue’, Helvetica, sans-serif; vertical-align: baseline; color: #000000;”>We’ve had it confirmed that Dave is a non-secretor so although his bloods are…[Read more]

  • Hi Paula,

    Velcade seems to be the popular choice for induction at the moment, no doubt something new will come along in the future.  I suppose we have to accept that not everybody will get good results from it but I kind of wish the consultant hadn’t specified a time frame for everything because its really upsetting when it doesn’t pan out that…[Read more]

  • My husband doesn’t like to have too much information and the consultant and nurses understand that. When first diagnosed he was told he’d have 4-6 cycles of induction treatment followed by SCT. Things have not gone to plan and he is now on his 8th cycle , his third combination of drugs, and he takes each cycle as it comes. He knows the aim is to…[Read more]

  • <p style=”text-align: left;”>My husband doesn’t like to have too much information and the consultant and nurses understand that. When first diagnosed he was told he’d have 4-6 cycles of induction treatment followed by SCT. Things have not gone to plan and he is now on his 8th cycle , his third combination of drugs, and he takes each cycle as it…[Read more]

  • Hi,

    In our experience once the diagnosis has been made things happened very quickly.  My husband sees his consultant every 4 weeks to talk about his current treatment, with bloods taken on the same day. If he has any problems eg, pain in hands and feet, the dosage is adjusted.

    When was your diagnosis and what treatment are you on?

    best wishes

    Teresa

  • Dear Ann, I hope your husband continues to do well.

    Hi Mike – its shocking that free availability of this drug is not universal.  Its a shame that you have to battle to get access to it.  Let us know how you get on,

    best wishes

    Teresa

  • Dear Ann,

    Thank you very much for your advice.  Dave was up very late this morning so I was able to give him the Linlaro after reading Adrian’s message, before he got out of bed. By the time he got up and showered he didn’t have to wait long before he could eat and take the Dex. He hasn’t been sick to day but if he is we will do the same as your…[Read more]

  • Hi Adrian

    We still don’t have the results of the bone marrow biopsy, doctor explained it had to be sent away and a dye needed to be added etc. We go back in two weeks to talk about how Dave is getting on with the new meds. I think Dave has gas and air, I’m glad that it made it better for you. He said he’s not prepared to have any more biopsys…[Read more]

  • Hi Adrian and Ann

    My husband is starting the new combination of drugs today. In your experience is there a best time of day to take the Ninlaro? I know the Dex is best in the morning and Revlimid at night

    Teresa

  • Hi Adrian,

    I think Dr J is very keen to make sure his patients get the best chance at remission so although his treatment plans seems to be longer than other hospitals I have faith that the outcome will last longer.

    Let us know when you get your bone marrow results. Dave gets the second part of the results on Tuesday

    Teresa

  • Hi Adrian,

    I think Dr J is very keen to make sure his patients get the best chance at remission so although his treatment plans seems to be longer than other hospitals I have faith that the outcome will last longer.

    Let us know when you get your bone marrow results. Dave gets the second part if the results on Tuesday
    <p style=”text-align:…[Read more]

  • Hi Adrian

    Good to hear from you! Yes we see Dr J. How have the last three months been for you? When were you diagnosed and what’s the next step for you?

    Teresa

  • Hi,

    It seems so tough trying to get the treatment you need, good to have Myeloma UK on your side.

    I don’t know how or why the consultant has gone down this route. He didn’t say it would be a trial, just that he was fortunate to obtain funding, perhaps because its only for 3 months or because my husband’s brother died from MM? My husband had 5…[Read more]

  • Hi Michael,

    How long have you been taking Rev/Dex?   Have you had SCT and now relapsed?  My husband is still on initial treatment, his SCT has been delayed twice,

    regards

    Teresa

  • Hi Ann,

    Thanks for your reply. I’m glad to learn that your husbands cough has eased and that he is getting good results from the treatment.

    We saw a lung cancer consultant today who my husband went to last year for tests due to a persistant cough and who is taking a special interest in my husband although he has definitely ruled out lung cancer.…[Read more]

  • John, if you haven’t found it yet its called Uk Myeloma Support Group

    Teresa

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