On the other side of the coin it might not be too bad as we all react differently. I used to take mine at about 6:30 in the morning- yes i was more tired than usual, but it did not keep me awake at night…..i did have slight mood swings but nothing major, just a bit bitchy when i shouldn’t be and my poor husband couldn’t do anything right!!! It…[Read more]

Hi Jan

took your advice and booked the info day in Norwich on 5 March!! I had my bone infusion yesterday and checked my bloods etc taken in December all within normal limits with the exception of my light chain which had risen to 600 (from 300 in October) which was  a shame. Still going on holiday on Tuesday so not going to think about til i…[Read more]

Hi Jan

yes, i will go to the info day, there is one in Norwich in March which is very close to whete i live. I got to be honest, up until now i have been burying my head in the sand not wanting to know too much, but i have just started to get curious. I am lucky i feel so well , i was left with after effects from radiotherapy and the subsequent…[Read more]

Hi Jan

thanks for taking the time for your post.mimdo have an excellent understanding with both my Myeloma Nurse and my consultant at Addenbrookes. I due tosee them again March so will ask some questions. When my Myeloma was diagnosed two years ago my light chains were 350 all,other bloods good only problem was the solitary plasmacytoma which was…[Read more]

Another shrort Post. First of all Happy and hopefully healthy New Year to you all. I wonder if sso eone can answer this question. It is exactly two years since i was diagnosed with MM had 4 weeks radio therapy every day for a single plasmacytoma, then just 4 months of CDT. No medication at all since June 2014 and do not see consultant til we come…[Read more]

Hi Graeme

thought i would let u know i heard from my speciality nurse at Addenbrookes today that the full skeletal scan i had ahows no new lesions and everything looks stable. I see Jenny Craig on the 27th so don’t expect to go back on treatment yet. I hope u doing ok as well. All the best Avril

Hi Graeme

What a small world. I have been under Jenny for a few months as Dr Vassillou has been on sabbatical for 6 months soing research into blood and bone marrow cancers! He returns early November. My next appointment is the 27th when i also have my bone infusion . I actually live in Norfolk. My Myeloma was discovered in February 2014 when i…[Read more]

Hi Dino.  I am under Addenbrookes. They amazing. Who is your Consultant? I have a lot of dealings with the speciality nurse, Helen Goad, who i think is wonderful. My consultant is George Vassilou. I am also in remission at rhe ,oment after one course of CDT but not going to have a SCT. Good luck with the next part. Ww

As you rightly say, we are all different. Be interesting to hear how you progress. Wish you very good luck and good news. Avril

I was told that because i had a plasmacytoma they automatically do a bone marrow test as in most cases this is a precursor to myeloma and with me this was correct although my light chains were very low they erred on the side of caution and started me on 4 months treatment. I was given to understand this is normal when a plasmacytoma is discovered.…[Read more]

I would bring this question up to your consultant or ring the Myeloma nurse. I had a plasmacytoma on my right octipal bone January 2014 had 5 weeks radiotherapy tomget rid of it. My light chains were about 350.  Was put on four months CDT bringing my light chains down to about 30 have had no further treatement since. However, my light chains have…[Read more]

Gosh we have an inhouse chemist at our Coastal Villages Practice and they wonderful. I guess we just lucky. Feel for those of you who dont have this service. Dont need added problems.

Thanks so much for this response, very informative. My original light chains were 347 discovered through a biopsy on my octipal bone which was asolitary plasmacytoma.  I have not had a virus or anything wrong with me for about 8 months, the. Only last winters cough etc., guess have to wait and see.  Thanks again for your response. I am under a f…[Read more]

Hi everybody

I wonder if any of u have the answers to some questions. I have been off treatment since June 2014 -( my light chains plateaud at 47) initially had 5 weeks daily radiotherapy for a solitary plasmacytoma then a round of CDT for four months. It now appears after 15 months that my light chains are rising!  Think they going to do full…[Read more]

Hi Stanley – i  am a bit of a coward and the thought of SCT terrifies me. What hospital are you under. I am with Addenbrooks. They been fantastic. Thanks for your input.

Thanks so much for your comments. I am not going to go down the SCT route. I don’t think i could cope with it from what i have heard . My consultant has said even though i am over the “accepted” age for SCT – i am 73, but because i so well and fit he would not have a problem with me having it done. guess it just a personal thing and not for me.…[Read more]

I also have a question ? I had standard CDT treatment last year for four months, finishing in June and no treatment since, with the exception of Zometa bone i fusion 6 weekly. I last saw consultant in June and due back end of October. My light chains plateud  out at 37 last June and had risen to 100 in a year. I know in the scheme of things i…[Read more]

Yes do post his progress. Also take heart its the drugs causing his mood swings , my husband and family all thought they were walking on eggshells when i was on treatment. They couldn’t do anything right but i got over it when i came off of CDT. Best to you and your husband.

I am so soory to hear about ur husband Chris. i also had a Plasmacytoma, discovered whilst on holiday i. india. Needless to say I was hospitalised and then flown home for treatment. They wanted to operate on mine whilst in India, but I said no way. My daughtern the meantime did some research and found out more information. Spoke to a specialist…[Read more]

Thanks so much for this info. Your dad sounds like me. I 73 not going to have stem cell treatment. Been of first round of treatment now for over a year . Bloods all good light chains just 102.  Nopains and back to doing normal things. See consultant again end of October  (4 months since last visit). Will try these other insurers. Thanks for te nfo.