Carole D

  • Hello Everybody -Having been a periodic contributor to the Forum for a number of years (husband first diagnosed with MM 2009, several chemo treatments and two STCs later and doing ok) I would like to ask if anyone can help me raise funds for MyelomaUK. Basically, I have been an avid machine knitter for over 30 years and still have a stock of yarn…[Read more]

  • caroled replied to the topic Hi in the forum Newcomers 6 years, 9 months ago

    Hello Bijou – with regard to your blood tests it could be that the initial tests showed some abnormality and they wanted a 2nd test to test for these “light chains”. I don’t think the light chains are routinely checked in initial blood tests but I believe that there are only a couple of centres where the testing of light chains is done so the…[Read more]

  • caroled replied to the topic Hi in the forum Newcomers 6 years, 9 months ago

    Hello again – just to say that your breathlessness could be due to the lesions you mention – if they are near your lungs, ie on the ribs, could be due to their pressure on the lung. That’s what happened to my husband but after initial sessions of radiotherapy the breathlessness went. I can understand the “Alice in Wonderland” feeling but reme…[Read more]

  • caroled replied to the topic Hi in the forum Newcomers 6 years, 9 months ago

    Hello Bijou! Can’t really add anything to the other posts but just to confirm there is life after diagnosis of myeloma. Husband diagnosed in Jan2009 after discovering a lump (turned out to be plasmacytoma) on his ribs. 20 sessions radiotherapy got rid of the lump , then followed 6 months of CDT (chemo) which wasn’t too bad and then stem cell…[Read more]

  • caroled replied to the topic Feeling anxious. in the forum Carers 7 years, 2 months ago

    Hello Adelaid- Agree with Carol S about avoiding infections when your husband comes home. Self-imposed quarantine has worked for my husband – no visitors, no supermarket shopping etc (for him) for 3 months. Follow eating regime and go with the flow. My husband slept quite a bit when he came home, but then  started getting up later in the m…[Read more]

  • Hello – don’t know if I can help or not – perhaps someone else can if I can’t. Quick resume – my husband just had his 2nd SCT after 5 years drug free. When he came out of hospital he had no appetite and his taste had completely gone. Started off just giving him what he fancied and easy to eat eg pancakes, scrambled egg, omelette, rice pudding in…[Read more]

  • Hello Graeme – cannot really add much to the advice already given. Have you got a copy of Myeloma UKs book “The Small Things That Make A Difference”? It is a collection of snippets from the “front line” and there are quite a number of them relating to SCT. My husband had his first SCt 4+ years ago and is now being lined up for his 2nd one. Every…[Read more]

  • caroled replied to the topic CVD in the forum General 7 years, 9 months ago

    Hi – My husband is on the same regime and is just about to finish his fourth cycle, out of six. He has a Velcade injection every week, a Zometa intravenous every month and cyclophosphamide every day and dexamethasone two days a week. The first night of taking dex he has trouble sleeping and his voice goes “croaky” for 24 hours. He also has a…[Read more]

  • Hello – just to let you know there is life after diagnosis. My husband was diagnosed in Jan 2009 at age of 62 and after going through standard regime known as CDT and stem cell transplant was free from any symptoms until Dec 2013 and we got on with normal life, such as holidaying and put MM to back of our minds, although you do get “twitchy” at…[Read more]

  • caroled replied to the topic Cake recipes please ! in the forum General 8 years, 4 months ago

    Hi Lesley- Have recipes for several “orange” cake mixes (if you wanted the myeloma UK colours) including an easy make delicious chocolate and orange. Otherwise, have quite a number of others which have always proved popular at previous cake sales. If interested, please email me ( and I will be more than happy to send a…[Read more]

  • caroled replied to the topic Travel insurance in the forum General 10 years, 4 months ago

    Hiello Lin – It is almost two years since my husband had SCT, is OK, and since then we have used Vital Health a few times. From ringing around and online enquiries to numerous firms, they came up with the most reasonable rates.
    Their address is: 308-314 London Road Hadleigh Essex SS7 2DD and telephone no:0844 826 2696. (Sorry, don't know what…[Read more]

  • Hello WelshHelen – just to say my husband had prostate cancer in 2005 and didn't have chemo or radiotherapy – just had the entire prostate removed and since then his psa has been negligible. He was diagnosed with MM in Jan 2009 and the prostate consultant (lovely chap) was quick to say there was no link whatsoever. Interesting though that Roger,…[Read more]