[kaychappersParticipant]

Hi everyone. Just wanted to let you know I saw my consultant Monday and it all looked grim. She said my SCT was a disappointment. My last 3 PP results were 16, 18 and 22. Good news was she believed my bone/joint pain was rheumatoid arthritis and she wanted to get that under control as I am in so much pain, but she did not have the results of the CT/PET scan back. They did more blood tests On Tuesday evening she telephoned me to say scans showed no sign of bone disease and it is arthritis (never been so glad to have athritis). PP had risen slightly to 23 but she is not worried about them. They started treatment last Feb when I had anaemia and my HB has consistently risen since SCT so unless my HB starts to go down they are putting me on no treatment not even maintenance. I go back in two weeks just to confirm everything, but I am so pleased. Thank you all once again for being there Kay x

[kaychappersParticipant]

Hi Dai I do wish you all the very best. When I was speaking to my consultant on Monday she was telling me about a new trial (did not take in the name) and she was so excited about it. It gave me hope that if I did need it I was more than happy to try it. Do let us know what you are randomised too. Kay x

[kaychappersParticipant]

Hi Amelie I had my SCT in September and my PP has risen for the last 3 blood tests, but my consultant said she is not worried due to my HB rising consistently. When I had to have treatment it was because I became anaemic and that is what they will look for rather than rising PP. Myeloma is so so different for everybody. I do wish you both all the best. Kay x

[kaychappersParticipant]

What fantastic news for you both. Enjoy hearing the positive side of this illness. I had SCT in September and came through it really well. Out in two weeks and now I am back to work. Love Kay x

[kaychappersParticipant]

Thank you all so much for your replies. Lorraine you have given me a lot of hope. Scan went ok. I believe they are thinking about putting me on revlimid but we shall see on Monday love Kay x

[kaychappersParticipant]

Thank you all for your lovely replies and thoughts. What a pain Myeloma is. So great to have the support to share with. Kay x

[kaychappersParticipant]

Hi Michelle I am so sorry that you and your husband are at the stage that you are especially the young age that he is as well (although whatever age this terrible disease does not care and is hard and awful for all concerned). I agree with the others, always make sure you say how much you love the person and try to keep positive. There are other drugs. Shout as loud as you can to try to get further treatment. Never say never. Stay strong. I know it is not easy to do that, but hopefully where one door closes another will open for you. Kay x

[kaychappersParticipant]

Thank you all so much for your replies. I think the answer is BE PATIENT and just do as much as my body will allow.
Best wishes Kay

[kaychappersParticipant]

Thanks Min and Wendy. Paracetemol seem to help. I also have been told my feet hurt due to the velcade, I only hope it does wear off. I think I just want to feel better yesterday, even though the consultant told me it will be 3-6 months. Patience has never been my strong point. Sorry to hear you are going through the same Wendy, but nice to know it sounds like Im normal 😀 Kay

[kaychappersParticipant]

Hi Jim sorry you have to come here, but the people here offer lots of support. I was 44 and extremely fit too. I was completely shocked, but I think we are going to here more and more younger people being diagnosed as they can pick it up earlier and that I am so pleased about. I was on the XI trial. There are lots of pills to take, but you soon get into a routine. Just take it a day at a time and ask lots of questions. Every case is different. Its not a walk in the park but you get through it. I have just had my stem cell transplant and getting there. Time seems to go quite quickly after the first couple of cycles. Keep in touch here. Kay

[kaychappersParticipant]

Hi Peggy so sorry to hear about what has happened and I sincerely hope that you are on the mend. I also had an allergy to allopurinol and ended up in hospital with the rash from neck to toes and shivery. They pumped antibiotics into me and sent me home with lots of antibiotics which thankfully cleared it up. My best wishes to you.
Kay x

[kaychappersParticipant]

Hi Dai
In a positive way its good there was a reason for you being so down, but it must have been pretty rough for you with the needles. So glad they got you sorted. Everything crossed for good news on Monday.
Kay x

[kaychappersParticipant]

Hi Gill
I have put on 2 and half stone in weight and gone from a size 8 to a size 14-16 (closer to the 16 :-)) I was on CDT now on Velcade. I found it hard putting on the weight in the beginning, now I am going with the flow. Its going to be the only time I can eat what I want so I am going to enjoy it. I know it will come off once I have my SCT (hopefully in September). I will be moaning at Christmas I cant indulge. Never happy us women. It is the dreaded steroids though. Good luck with the CDT.
Kay x

[kaychappersParticipant]

Hi Claire
I was diagnosed in 2009 and only started treatment this year. It was a watch and wait for me too. I was monitored with blood checks and my consultant said that the treatment would make me more poorly than the disease at that stage. They can tell so much from blood tests and intervene before you get, as the others have said, the bone pain or other symptoms. They started me on treatment because I became anaemic. Hope your mum continues with just blood tests for a long time, but also ask questions when you go to the hospital for peace of mind. Kay x

[kaychappersParticipant]

Hi Gill
Sorry you have to come here too. It is a bomb shell when diagnosed, but as everyone has said this site is wonderfully supportive, and there is always someone who has been through it, going through it or will be joining the journey with you. Ask questions as the hospital and take someone with you who can be your added ears. Let us know how you get on. One foot in front of the other.

Best wishes. Kay

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