[avrilro55Participant]

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 wasn’t too bad. Good luck

[avrilro55Participant]

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 come back. I count myself lucky i have no aches and pains.

Thank you for your responses.

 

avril

[avrilro55Participant]

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 medication which i have learned to live with, ie, deafness through radiotherapy and acid reflux through medication, plus now have false teeth as the bone infusion ruined my teeth. LOL, but this is a small price to pay when i hear how other people are. I am a young 73 and up until i had this plasmacytoma then myeloma diagnosis have sailed through life without even so much as any tablet, i guess it came as a shock. However i not unduly worried, i am a very positive Person, have a great supportive family so i count myself as lucky. We are off on holiday next weekend for three Weeks for some lovely sun. Stay well and thank you for your great comments. Avril

[avrilro55Participant]

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 treated by radiotherapy then CDT. My light chains went downnto 35 when i stopped treatment. Now about the same as they were before i started CDT. I lucky no other health problems and kidneys excellent.mmost people seem to go down SCT route which i am not. Guess i will have my holiday and will think about it. I always been curious and tried to guage what next treatment consists. Happy New Year and thanks

[avrilro55Participant]

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 back from holiday end of March. I still have bone transfusions every 4-6 weeks. My light chains are 298 and all other bloods good. My question is when do they usually put you on second round of treatment. fYI i not having SCT…. Any info appreciated.

[avrilro55Participant]

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

[avrilro55Participant]

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 was take. Ill with. Plasmcytoma. My levels are very low although they have risen slightly over the last couple of months. See what Jenny has to say when i see her on the 27th. We going to India on holiday in January so hope no treatment before then.  Good luck and take care. Avril

[avrilro55Participant]

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

[avrilro55Participant]

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

[avrilro55Participant]

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. Did your consultant not explain this to yiu. Perhaps different hospitals operate under different situations. They look at the whole picture not just paraprotein/ light chain levels. Your consultant should give yiu all yiur answers. Are you under a haematologist specialist? Which hospital? Hope all goes well.

[avrilro55Participant]

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 to strted to rise gain to almost 300 although all other bloods good. My consultnt suggested. Full body scn which i had last Friday to check if everything still ok? Have no pain so feel optimistic re results which i will get when i see consultant again on 27 October. Am planning a winter holiday so hope i do t go back on treatment yet. Which hospital are you under. I am under Addenbrooks.

[avrilro55Participant]

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.

[avrilro55Participant]

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 firstclass team at Addenbrookes, cambridge.w

[avrilro55Participant]

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 scans and another bone marrow test and either monitor me again more closely or put me back on treatment. I under duscussion with the team at present! My question is when having Velcade, which has been suggested, is it given in combination with other drugs? Also as all other bloods stable and my light chains have only risen to 238 from 47 in 2014, is it better to delay treatment until they higher as have no symptoms at all, ie no pain etc and feel so well? Would be great to get some views on this. I wish you all well and thank you.  PS also have a 3 week holiday in the sun planned for January!!!

[avrilro55Participant]

1. 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.

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