Thanks Etta,
I can tell already that people are friendly.
I put my story on my profile but will copy to here.
Thanks again Etta, nice to meet you. Karen 🙂
I am a 51 year old married mother of 2 teenage girls. Diagnosed aged 50 in July 2012, with Multiple Myeloma. Changed all our lives forever. We live in Rutland, but our nearest hospital is Leicester Royal infirmary, almost 30 miles away. Treatment to date, CTD chemotherapy in Myeloma Xi trial from August 2012 – four courses. Radiotherapy 8 gy to spine from T5 to T12 with an exit dose to the sternum. Vertebroplasty to 3 vertabrae, further vertebroplasty (cementing) awaited. (2nd MRI 11/5/2013) Autologous stem cell transplant January 2013 (stem cells in store) Medication at present Zoledronic acid (zometta) every 4 weeks. (bone strengthner) Morphine, zomorph 40mg twice daily Adcal-D3 oramorph Paracetamol. My consultant prescribeAzithromycin(antibiotics for emergencies), i am allergic to penencilln (sp) I have a back brace that has never been properly fitted. I have a slight curve, the physio recomended that I spent some time each day on a gym ball, it really helps with posture. I have a perching stool in the kitchen, murder keeping my cats off it. A board for the bath, again somebody was to come round an fit it. 9 months(approx). I do not bath anyway as it is very uncomfatable, and I cannot lie down I have a blue badge (parking0, which is very useful, though I have not driven myself for sometime. Worse than all this is the fact my consultant signed me of work for another 6 months, because of pain, risk of infection (I am a school cook) and I am waiting another vertebroplasty. Although i have family, they are out at school/college/work, so I have a lot of time alone. Our nearest realatives are 3 hours away and the few friends I have are working of course. I have nice next door neighbours, but cannot impose daily. As well as my job I used to work on Saturdays in our local cancer research shop, i miss that too, although I chat every now and then to the manager, I must ask my consultant can I go back. Is there an infection risk though. My husband (and daughters) has/have been very supportive and strong, but I sometimes feel guilty, as it has not only changed my life but of course all of us. I think my husband over worries sometimes, that is not a critisism, he has been great, I do not know how I could cope without him. Thanks for listening, reading through some threads, you all seem a friendly bunch, not the best way to make friends, but I hope we can. Take care Karen
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Two weeks ago I was diagnosed with Asymptomatic Myeloma. I'm waiting for a letter giving me my first monthly "for ever" infusion of Zoledronic acid. I have started to take Calcium Carbonate tablets.
I'll lurk awhile here to learn from others.
BTW I'm a 65year old male.
Hi Lexi,
My Mum is 83 and was diagnosed in 2007. She did not take the news well either and was quite depressed for a while, particularly as my stepdad had only just passed away. She also finds it hard to understand the disease and gets a bit confused so she needs a lot of help with it all from me. She had no treatment for a while, just monitoring every three months but her paraproteins (which are the indicators of myeloma in the blood) started to rise slightly (started at 17 and rose to 36) so her consultant started her on course of chemotherapy which was tablets – Cyclophosphamide, Dexamethasone and Thalidomide (CDT for short). You Mum's consultant will assess the paraproteins over a period of time to see if they are rising and there seems to be different approaches – some consultants will begin treatment earlier with the aim of tackling things before any symptoms develop. If your Mum needs treatment they will assess what to do on the basis of her general health, this is normally about kidney function, bone damage, anaemia etc. After initial adjustments to the various doses my Mum had a good response to the CTD and was in plateau for about two years which meant the disease was stable. She has recently started a course of Velcade injections as her levels started to creep up again (from 12 to 17) which is inevitable really as there is no cure for myeloma. With elderly people the aim is to keep them as symptom free as possible without giving medication at levels which cause unacceptable side effects. You mention anaemia – my Mum had a small blood transfusion this week for that and she is feeling very much brighter as anaemia can make you feel very low. Iron tablets are not the best option as they cause other tummy troubles. Mum is now also having a bone strengthening infusion (zoledronic acid)once a month which helps to bind calcium to the bones and keep them stronger – this is actually a very useful thing for all elderly women).
So there are lots of things that can help if the disease progresses and they are all available even to older patients provided they are fit enough to cope. In terms of long term outlook I believe it used to be much shorter but all the new treatments make a big difference and certainly my Mum is still reasonably fit and health, mobile and doing very well for her age.
Hope this helps but do ask any questions and I will help if I can! Remember to look after yourself as well as it can be hard for carers too.
Take care,
Jill
Since his sct last August John has got Aredia every month. He has been suffering from rash and itch and a few days after his last Aredia infusion it became very bad. He went to the hospital and they immediately recognized his problems as a reaction towards Aredia.
What alternatives are there to Aredia (pamidronate disodium)?
Could Zometa or Aclasta (zoledronic acid/zoledronate) be used instead?
Thanks in advance!
Hi Norman,
My husband Patrick goes through fazes when he has monthly infusions of Zoledronic Acid (Zometa)mainly when he becomes hypercalcaemic (too much calcium in his blood). I am happy to say he has not suffered any side effects to date.
I believe the side effect Liz is referring to is caused by long term use which may cause a degredation of the bones in the jaw.
Good Luck
Tina
