[birderParticipant]

Sorry to hear this, I currently have 7 plasmacytomas, all quite small and not painfull. I saw my consultant last Monday and he has said stem cell treatment was not going to work as I have already had the same chemo i had to try and get rid of a big painfull plasmacytoma on my right shoulder which broke the bone, radiotherapy got rid of it not the chemo. I’m currently on steroids as per the protocol they have to follow before he can issue the the level of drugs- which is november 4th. I’m really hoping the next level of drugs can control these plasmacytomas and the disease in general.

I have done some research and there are new drugs available on the NHS, sorry i can’t remember the names and not sure if they are only for people who can’t have stem cell treatment for various reasons like me or they may not work for me. I am concerned about side effects but I have to go with it.

It’s hard , I’m a carer for my wife but fortunately we have help from her son.

We just take 1 day at a time.

Take care

[birderParticipant]

Thanks for your reply rabbit, my wife’s son has moved in with us and is looking after both of us, we both help each other to look after my wife.

I will ask my consultant about the chromosome issue.

The drugs you mention I have seen on cancer charity websites and I’m hopefull they will help me. I will make a note of these drugs and ask my consultant if I’m going get any of these.

As for medical records I’m going to try and get access.

Thanks again for your reply and will look at the forum ref elranatanab.

[birderParticipant]

Thanks for your reply rabbit, my consultant has put me on steroids for 2 weeks and then plans to prescribe new drugs, I don’t know what ones yet. He said he would like to put on the new drugs straight away but has to follow protocol and cannot give me the new drugs until I have been on this steroid treatment- which I started today. To be honest I have a lot on my plate as I’m a carer for my wife and have so much going on in my head. He didn’t say anything about chromosomes. Any info you have would greatly appreciated. As for the high risk- because the myeloma has spread I have been told by the consultant that it’s not good. I was discussed at the multi disciplinary team meeting last week and the plan to put me on these new drugs was decided then. I need to ask more questions when I see the consultant in 2 weeks.

[birderParticipant]

gcoulter thanks for the information, i can hopehully enjoy my holiday now.

[birderParticipant]

Glen, many thanks for your reply, it’s put mind at rest. Thanks again.

[birderParticipant]

Sara, I’m on the radar trial and apart from some insomnia on steroid day, some fatigue I have been pretty much ok. I’m on my 4th chemo cycle which ends next week and see the the stem cell pre op team next week after the chemo. I saw my consultant 2 weeks ago and she said my relevant numbers had come down a lot in a good way. So I’m hopefull.

[Author]

Posts