Hello – my husband was diagnosed with Bence Jones myeloma in 2009 and has had two lines of chemo and 2 stem cell transplants and is here to tell the story. We would be prepared to partake in your research. Regards, Carole Dunkerley
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 blood sample has to be sent to one of these which is why it will take a bit longer. Like Andy says, a 24 hour urine test can be undertaken which can show up various factors. Keep smiling!! (I know – easier said than done!)
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 remember there are people on this site who have not only been there, done it, but have worn the T–shirt out!!!
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 transplant which he said was “do-able”, following that 5 years drug free and normal activities. Had more chemo followed by 2nd STC in Dec last year (due to another plasmacytoma) and now back to his gardening, DIY and holidays taken and booked. He is 68. Meeting others in same boat at support groups is helpful and encouraging. Best wishes.
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 mornings, had something light to eat, then went back to bed for couple of hours in afternoon, stayed up for his tea and then had early night. Eventually started getting up at fairly normal time and just went to bed early, say 7ish. Eating normally came back gradually and hair has just grown back 3 months after SCT (which was his 2nd one, the 1st one being 5 years ago). My advice would be to take care of yourself as well as looking after your husband (and that’s not being selfish) and your feelings of anxiety are perfectly normal and understandable – take it from one who has been there- twice!! “Getting it right” is whatever suits the two of you. Best wishes. Carole
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 very small amounts. Changed the taste of the pancakes slightly with syrup/sugar/jam. Soon then seemed to get taste for meat and potato pie with Oxo but again less than a child-size portion. Eventually did get back to normal but took longer than we expected. If your husband can continue to eat just small amounts he will probably be ok. Perhaps depends why he is struggling to eat – is it the medication, loss of appetite , etc. In my husband’s experience, the hospital food didn’t exactly encourage eating due to the appearance, temperature and presentation!! Please keep us posted as to how you are going on. Carole
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 day he made the effort to dress in his own clothes, rather than a hospital gown – made him feel less of a patient. I would certainly recommend taking in some very soft toilet paper! Regarding the sucking ice before and during the chemo, he took in ice lollies so that there was no danger of ice being unavailable. He also had a digital photo frame of “feel good” photos of holidays, the garden, etc but they have probably been replaced now with some other technological device. Can’t really add anything else, but wish you all the best. Regards Carole
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 voracious appetite due to the dex and as a result has put on weight (looks like he has swallowed a melon whole!). Had some slight swelling of one ankle initially but this seems to have gone now. Overall, he is coping well but I believe different consultants provide different regimes using the same three chemicals so this could affect an individual’s reaction to the chemo.
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 3-monthly check-ups. Last year he fitted a new kitchen, new bathroom suite and replaced some woodworm-infested floorboards and joists in a relatives house which was obviously quite physical work. I’m only relating our story (not offering his services!) so hopefully it is not necessarily doom and gloom on diagnosis. Although the MM has re-appeared (after 4 years) and he is half way through the Velcade cycle, we are optimistic that he will get another remission. Like others on this web-site, I do agree you have to take a day at a time as MM is so individual. Best Wishes Carole
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 (billcardunk@hotmail.com) and I will be more than happy to send a selection of recipes. Good luck anyhow with your cake sale. If you are anywhere near Greater Manchester I’d be willing to help with the baking!! Rgards Carole
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 DES stands for!) They will only cover single trips, not annual. Hope this is of some use and good luck with the searching! Carole D
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, when in late teens, did work on a farm with heaven knows what chemicals and then worked 30+ years shifts which have been said to reduce effectiveness of the immune system. Although prostate cancer is not uncommon amongst men of a certain age, I believe that this age ties in with the fact that these men possiby worked in "heavy" industries and worked with chemicals and substances which were not then subject to "health and safety" regulations and perhaps could be a reason, why now, certain male members of this particular age group are also diagnosed with MM. To endure a diagnosis and treatment of cancer is bad enough and you get through it, but it doesn't make it any easier in dealing with a second one!! Keep your chin up WelshHelen.
