PaulR

  • Hello Kerry,

    You have had such a lot to deal with, it is not surprising you are worrying about everything. It does seem to happen like a whirlwind with no time to take it all in. I am 38 and my husband Phil was diagnosed in May this year at the age of 43. Since the end of May he has had two operations on his legs as well as the chemo…[Read more]

  • Hello Nicola,

    I hope your Dad's hands warm up soon. Phil discussed it with the Doctor yesterday and they reduced the dose of velcade he was given. Hopefully this will help, Phil's feet were still cold last night but today he actually didn't notice it until I foolishly asked if his feet were still cold and that brought them back to his…[Read more]

  • Hi Kevin,

    Great news about your light chains and bone marrow biopsy and it is nice to hear that the side effects went away once you finished treatment. My husband Phil is on his 6th and final cycle of dox-dex-velcade and he has had a few new side effects pop up in the last week that we are hoping will disappear after he finishes this…[Read more]

  • Hi Dai,

    We spoke to a doctor again today and they reduced the dose. Phil only needs one more injection now on Saturday and they will reduce that dose as well so hopefully it will not be a long term side effect. Very frustrating that the medicine you need to get better can cause other problems.

    Thanks for sharing your experience. I hope…[Read more]

  • Hi Keith,

    Phil did mention it but the Doctor was not too concerned, we will mention it again more forcefully when we go in on Wednesday as it is bearable as a temporaray side effect but Phil would not want it to continue long term! It is often hard to tell what is caused by the Myeloma and what is caused by the medication but we are sure this…[Read more]

  • Hello,

    My husband Phil is on his sixth (and final) cycle of dox-dex-Velcade and he has started to have some peripheral neuropathy symptoms from the Velcade, his feet always feel cold even when they are toasty warm. Phil finds this very disconcerting and I was wondering if anyone else had experienced this and found a way of tricking their feet…[Read more]

  • meganjane replied to the topic Never Give Up. in the forum General 12 years, 1 month ago

    Dear Eve and Slim,

    Thank you for posting your good news, you are right, for those of us at the start of the journey who have already experienced a few hiccups it is lovely to hear positive news. Enjoy your travels!

    Megan

  • Hi Emma,

    It is my husband Phil who has been diagnosed with MM but I have read him bits of your blog as so many of your experiences have been similar. I am 38 and Phil is 44, he is also on the PADIMAC trial, a bit ahead of you and Alex but a bit behind Helen. If you have any questions feel free to ask, Phil has already had five sessions of…[Read more]

  • meganjane replied to the topic So far – so good in the forum Treatment 12 years, 2 months ago

    Hi Pat,

    I am so glad to hear that things are going so well. My husband Phil is also using a pill organiser to keep track of things, it is amazing how easy it is to forget if you have taken everything, especially when there are so many to keep track of!:-) Phil has also been surprised by the relative lack of side effects – long may it continue…[Read more]

  • meganjane replied to the topic Hopeful message in the forum General 12 years, 2 months ago

    Hi Jean,

    Thanks for sharing this link, it is always nice to hear positive messages, especially from people researching MM.

    Megan

  • meganjane replied to the topic My dad… in the forum Treatment 12 years, 2 months ago

    Hi Joanne,

    I am sorry to hear your Dad is not feeling well. My husband Phil is on Velcade with Dex and chemo (I can never remember the name of the chemo) and his only side effects have been tiredness sometimes and his hair is thinning, probably from the chemo. Everyone seems to have very different reactions to everything, my husband loves the…[Read more]

  • meganjane replied to the topic Radiotherapy in the forum Treatment 12 years, 2 months ago

    Hi Tina,

    Well done on the stem cell harvest!! My husband Phil had radiotherapy on both of his legs, five sessions over five days. Side effects are obviously different for everyone but Phil felt tired but didn't suffer from any nausea. The tiredness may have had as much with having to travel into the hospital everyday as with the actual…[Read more]

  • meganjane replied to the topic Remission in the forum General 12 years, 2 months ago

    Sarah,

    Thank you so much for sharing your good news, for those of us at the start of the journey it is wonderful to read things like this. Enjoy it and long may it continue!!

    Megan

  • meganjane replied to the topic new to all this in the forum Newcomers 12 years, 2 months ago

    Hi Les,

    I am also new to the forum. It is my husband who has myeloma and like you it was whirlwind at the start. Phil, my husband, started to have some back and rib pain and then suddenly (it seemed sudden although it was actually a month or two before the diagnosis) he was diagnosed with MM and on treatment. The treatment had to be stopped…[Read more]

  • Hello,

    MM is very different for each person so it is hard to say what it will be like for your relative. My husband, Phil, needed a lot of help at the start when he was diagnosed but he had the added complication of operations on both legs to recover from. Since he has recovered from the operations and has been able to stop using the crutches…[Read more]

  • Wendy,

    Happy Anniversary 🙂

    It is lovely to read good news on the site. It helps people like me who are at the start of our MM journey, my husband Phil was diagnosed in May 2012, to stay positive.

    Megan

  • Hi Gill,

    My husband Phil was diagnosed in May 2012 and he started receiving Zometa injections every three weeks after he had a dental survey. He is on the PADIMAC trial at St. Bart's but I don't believe we have been told how long he will receive the Zometa injections, I assumed that it would only be as long as he was receiving chemo, I will…[Read more]

  • meganjane replied to the topic Good News in the forum General 12 years, 2 months ago

    Dear Eve and Slim,

    That is wonderful news 🙂

    Megan

  • meganjane replied to the topic Hello in the forum Newcomers 12 years, 2 months ago

    Hello Vicki and Colin,

    It is life changing and for us the initial shock was quickly followed by two operations for Phil to fix his femurs, we have had one thing after another since the diagnosis but now things feel like they are more under control and we are starting to understand things more. Like you we had never heard of MM but we are…[Read more]

  • meganjane replied to the topic Hello in the forum Newcomers 12 years, 2 months ago

    Hello Michele,

    This is why I love this forum, hearing the good news from others helps me keep a positive outlook, I know MM is different for everyone but I think a positive attitude helps and knowing that things can get better makes it easier to deal with. Thank you for sharing.

    Megan

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