[jmsmythParticipant]

Hi All

Just back from consultant, she is putting Frank on half doseage of thalidomide. She was very reluctant to stop it, she said the thought the reaction was coming from withdrawal of the Dex. Will try that and hope it works and can increase the dosage

His blood were good. Calcium, WCC, HB,kidney function all normal.  One thing was the protein has been gradually dropping for some months.  Today it was 14.  I thought that was good but she said no.  It meant there was something going on.  Cells stopped making protein.  We were in with her for some time and the clinic was very busy so I could not ask her any more questions.  Has anyone any experience of this

Regards Jean 

[KeithH17Participant]

Hi Jean
Maybe you and the Consultant are talking at cross purposes and you do need to ask to clarify.
Protein is good Paraprotein is bad is how I understand it.

Keith.

[jmsmythParticipant]

Thanks Keith

It is the para protein. She was always please when it came down. But the decline has been dramatic and she said there was something going on. I emailed Ellen to ask her. So will see what she says.

Thanks
Jean

[VickiParticipant]

Hi Jean,

I don't understand what your consultant means about the protein, I thought that it was good that the paraprotein levels come down. In our case colins pp level has come down consistently each month, and our consultant seems very pleased with that. I thought the pp level is the cancer marker measure so I would have thought that it was good they were coming down in such a marked way. I am sure Ellen will be able to clarify.

By the way we went consultant today, colins paraprotein in nil (no trace!) , they are going to do another test can't remember the name, just to double check. The bence jones light chains also come down from 1300 to 850 so thats good as well, they are considering reducing colins revlimid too because it's knocking his cells down so low he is ending up in hospital too much. Thats the plan but he is off treatment for another week so we will npknow more next Friday 22nd. Good luck with yours

Vicki:-)

[jmsmythParticipant]

Hey Vicki that's great news about Colin. Hope he goes from strength to strength. I thought that about the protein but I taped the conversation so I will listen to it and then ask her next Thursday.

All the very best
Jean x

[BADGERParticipant]

hello Jean
sounds to me that Frank is doing ok if it is the para protien coming down my consultant would say thats marvellous perhaps you were talking at cross perposes better go over your tape again. I t was my birthday today so we had a drive to the coast sunshine all the way for a change
Lots of love Jo x

[jmsmythParticipant]

Hi Jo

Happy birthday. Hope you have a lovely day – 21!!!! You had sunshine – lucky you – we are blowing up for a storm. Hope you had a nice drive

The consultant said that the myeloma cells are changing and the predominant myeloma cell is not producing protein says that it is a sign that the myeloma is progressing. Told us the count had dropped by a half without anything being done.  Following the protein was not the answer and will be looking at him and at the bones and taking other factors into consideration.

There was a bit that I missed because of the noise. I will ask again on Thursday when we go back to see about the thalidomide.

Take care
Love Jean xx

 

[MariParticipant]

Hi Jean,

sorry to hear things are not going smoothly for Frank. I know that sometimes it can be difficult to take in everything that the doctors say. Stephen and I often have conversations after consultations,going over what has been said and trying to fully understand. We have found it invaluable to talk to Steve's specialist nurse. She usually has more time to talk than the doctor and is very good at explaining things for us. Steve will often give her a call to talk things through at crucial points in his treatment. Do you have a specific nurse that you can have a chat with?

all the very best to you both,

Much love Mari xx

PS a very Happy birthday Jo, i am glad you have had such a lovely day xx

[jmsmythParticipant]

Hi Mari

I had just been saying to Frank a few minutes ago that I was going to phone Jackie our myeloma nurse tomorrow to clarify things but he said he would rather I didn't. He intends to speak to consultant when we see her next Thursday. Just hope Frank has no problem with reduced Thalidomide.

Thanks Mari
Love Jean xx

[KeithH17Participant]

Hi Jean
Very interesting what you say about the Protein count.
My own went up from 5to10 and then more than doubled to 22 all in the space of 2 months.
I then had a Bone Marrow biopsy which is the definitive test and this showed 35% MM activity confirming a relapse.
One thing I'd strongly advise Jean and that is ask lot's of questions and if you're not happy with the answers then make them explain in more detail and don't leave until you are happy no matter how busy they might appear.

Take care both of you…Keith.

[tomParticipant]

Belated Birthday Greating Jo I hope you had a great time

Love iccle ole Tom xxx8-)

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