EveProkop

  • So happy to hear your husband is home from hospital. I hope he gets into remission with his treatment and doesn’t have too many side effects.

    It’s a hard journey but doable.

    Maureen x

  • Hi Shirl

    unfortunately my husband has relapsed again and finding it difficult to find a treatment that works as each time he relapses the myeloma gets more aggressive. It is such an individual decease but he still has a few treatments left. Not happy with our consultant so asking to be referred to the specialist in Glasgow again.

    I hope your…[Read more]

  • bandityoga replied to the topic I'm still here! in the forum General 5 years ago

    Hi Helen

    I too think Ian should try all treatments until either his bloods are bad or he has bone fractures. I feel so stressed when we see this consultant and would prefer to see another one, as there are 4 in the practice but no specialists. I will have to speak to the specialist nurse to see what she can do to avoid this consultant.

    Ian is…[Read more]

  • So sorry to hear your husband is having such a bad time and it is so scary for you both. Early diagnosis is crucial but sadly many gp’s don’t know about myeloma as it is a rare cancer. My husband was diagnosed late in October 2012 after 7 months of back pain. He also had spinal compression but went on to have a SCT in May 2015 and was in…[Read more]

  • bandityoga replied to the topic I'm still here! in the forum General 5 years ago

    Hi Helen

    Thanks for the info but the trials in Scotland for daratumumbab are closed. We saw the consultant yesterday (the one we don’t like)and he was very negative, he has given Ian 2 weeks off treatment to see how he feels but if his FLC have increased again he will be taken off treatment. Only option open now are xomabib and mephalan given…[Read more]

  • bandityoga replied to the topic I'm still here! in the forum General 5 years ago

    Hi Helen

    Hope you enjoyed your holiday in Cornwall. We went a few years ago to Hayle and we loved it.

    Ian’s latest results show the FLC have risen by 20 to 113. I know it’s not a lot but wonder if the treatment has stopped working. He has just finished cycle 5 and we are off to Ibiza for 10 days on Sunday so we won’t know the results for…[Read more]

  • bandityoga replied to the topic new approved drugs in the forum Newcomers 5 years ago

    Unfortunately the new drugs are not available here yet. As he has had a good remission with his SCT he would be eligible to have another. Has your husband had revlimid or velcade? Farydak is also available. Hope this helps.

  • Hi
    My husband who was 56 on diagnosis also lost the use of his legs after spinal compression. He had a spinal operation to repair the vertebrae in his back (which I think were C1 and C2). The surgeon inserted posts and 2 pins which had to be removed later due to infection. I would ask for a back specialist to have a look at your brother.

    My…[Read more]

  • bandityoga replied to the topic Bone Issues in the forum General 5 years, 1 month ago

    Hi Sabs

    My husband had spinal compression when he was diagnosed in 2012 and had an operation to insert pins to stabilise his spine. It did work but he had to have the pins removed as they caused infection. He has had several treatments and a SCT in May 2015 which gave him 18 months remission. Now on farydak, dex and velcade which is working.…[Read more]

  • bandityoga replied to the topic I'm still here! in the forum General 5 years, 1 month ago

    Hi Helen

    Ian had really good results, after 2 cycles his FLC are now 93. We should get the results of cycle 3 next week so fingers crossed it is still working. He has more fatigue with this treatment and had problems with his bowels but that has calmed down.

    We were in Ambleside on 2nd May for a couple of days and had really good weather. We…[Read more]

  • bandityoga replied to the topic I'm still here! in the forum General 5 years, 3 months ago

    Hi Helen

    We went to see a specialist at The Beatson, Glasgow and he suggested that Ian start farydak, velcade and dex and if he gets into remission to collect stem cells. He will then get 3-4 days of radiation and then get his stem cells back. Ian is now finishing cycle 1, 2 weeks on and 1 week off which fits in with our trip to London. He…[Read more]

  • bandityoga replied to the topic I'm still here! in the forum General 5 years, 4 months ago

    Hi Helen

    Sorry to hear that your FLC are continuing to rise and I hope you get on the daratumumbab trial. Ian is in the same boat as pomalidomide has stopped working after 4 cycles and the consultant wants him to go on farydak, velcade and dex. We are going to speak to a specialist in Glasgow to speak about any other options but he has gone…[Read more]

  • bandityoga replied to the topic Initial diagnosis in the forum General 5 years, 5 months ago

    Hi Stanley

    Good to hear you are still doing well and in remission. I am not on technical terms with myeloma but do know a lot more now than on Ian’s initial diagnosis.

    We have just returned from a week’s holiday in Playa Blanca and saw our (not) favourite consultant and Ian’s FLC rose from 295 to 331. We hope this is just a blip as he is on…[Read more]

  • My husband was diagnosed in October 2012 and we both suffered from anxiety. He was give a phycologist to talk things over with whilst he was in hospital but it didn’t help very much. He was put on anti depressants which calmed him down. Everyone has anxiety in the beginning but you learn to live with myeloma. Not the same life before diagnosis…[Read more]

  • bandityoga started the topic Pomalidomide in the forum Treatment 5 years, 7 months ago

    Ian has just finished cycle 1 of 4mg of pomalidomide and 40mg of dex. We are feeling very happy and relieved. He has a little more neutropenic so the consultant is reducing the pomalidomide to 3mg. Back in 4 weeks so hoping it will continue to work and we can enjoy the Christmas season with the family.

    Maureen x

  • Thanks Stanley, he doesn’t seem to have too many side effects yet apart from lack of sleep due to the dex. Hoping that pomalidomide will get Ian back into remission.

    Hope you are doing well.

    Maureen x

  • After a long talk with another consultant, we decided that the best way forward was to use the next treatment in line which is pomalidomide. The daratumumbab trial was full in our area and it was only as single use without dex etc.

    We were very happy with our consultant as she took lots of time and explained everything we needed to know. If Ian…[Read more]

  • Hi Rebecca/Dean

    We are going to ask to see the specialist myeloma consultant at The Beatson in Glasgow which is only 30 miles away. It will hopefully put our minds at rest and let us know why he wasn’t considered for the trial. If we aren’t satisfied, we will ask to get another opinion in London, although the funding in England is different to…[Read more]

  • Hi Rebecca

    Ian has not had a whole lot of of combinations/treatments. He has had CTD, Velcade and dex and revlimid and dex then SCT. We don’t have a specialist in myeloma at our hospital so I have phoned Myeloma UK and asked some questions. There is a trial for early entry to daratumumbab near us but they said Ian wasn’t suitable so we will…[Read more]

  • We saw the consultant today and Ian’s MRI scan showed the myeloma was active on his lower back. He is starting pomalidomide and dex next Monday. I only pray that it works as this is the last line of treatment.

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