[Kazzam2Participant]

Hi all,
Had a pretty stressful clinic visit last Thursday, my consultant did not have my pp results, which was made worse by the fact that when she looked at my MRI results from May 11th, she said there is a lot of disease on my spine, but she could not be sure if any was fresh (her words). She said she would speak to radiologists, and advised me to email her today, which of course I did as to say I have been slightly worried would be an understatement this morning.
This is the reply! :
Paraprotein not detected so you are in complete remission. Phew!!!

I shall discuss MR scan with radiologists this week. I shall find out about vertebroplasty too.

If in pain do not try reducing morphine!!!

😀 How good is that on a Monday morning.

Best wishes to all xx
Karen

[jmsmythParticipant]

Great Karen. Love news like this and hope the radiologists have good news on the MRI

Best wishes
Love Jean x

[PerkymiteParticipant]

What lovely words, [u][b][i]Paraprotein not detected so you are in complete remission[/i][/b][/u] 😀 😀

I never got there but then I did not expect to get there 😀 .

Keep going Karen, just keep going.

Kindest regards – vasbyte

David

[Kazzam2Participant]

Hi Jean, Hi David

Thanks for your best wishes.

Take care
Karen
xx

[tonyfParticipant]

Oh Karen that's brilliant news, you were looking more than a little worried when we saw you on Thursday.
Well done just keep going.
Kind regards
Tony F

[tomParticipant]

Hey Up Karen that's great for any day let alone a Monday 😀
You now have a run on keep that going Girl well done 😉

Love Tom Onwards and upwards xx

[Kazzam2Participant]

Hi Tony,

Yep I was more than a little worried. I seen your good news on another thread, brilliant!

It was lovely to meet you and Helen, please pass my regards to her 🙂

May bump in to you again sometime, not toooo soon I hope.
Take care
kind regards
Karen
xxx

[Kazzam2Participant]

Hi Tom,

Thanks for the lovely comments! 😎

I intend to have a good long run all being well.>:-) 😀 🙂 (I am losing the plot).

King regards
Karen
xxx

[VickiParticipant]

Hey

Well done Karen great news…..in complete remission. Could hear that time and time again

Vicki and Colin x

[Kazzam2Participant]

Hi All, thanks for all your best wihshes, but there seems to be a bit of a twist!! 🙁
I received the following yesterday at 4.32 pm from my consultant I am copying and pasting :

Dear Karen

We discussed you at our MDT today as I had promised
Your disease appears to be in complete remission but MR scan report suggest as if there is still some active disease!!
To be on the safer side we have decided to book a bone marrow test with cytogenetics for you.
Please confirm that you have booked your vaccination 1st lot with your GP.
I have checked that we have enough stem cells left for a second transplant if we ever need to. No plans as yet.
I have referred you for radiotherapy to thoracic spine mainly for pain relief (single session) Form given to MDT cood.

Well that was short lived,:-S I have asked does this mean the SCT has failed as it was only 5 months ago, I am awaiting reply. I am going to hospital today but just for my Zometta.

Now I know what people mean when they say it is a roller coaster ride!

Warm wishes to all
Karen xx

[PerkymiteParticipant]

Email is a great way to communicate but it can leave so many unanswered questions!

Reading that your post Karen, [b][i]Your disease appears to be in complete remission but MR scan report suggest as if there is still some active disease!![/i][/b] I am not sure whether to congratulate you 😀 or commiserate with you 🙁 .

Kindest regards – vasbyte

David

[Kazzam2Participant]

Hi david,

Thanks x I do not know if to laugh or cry as re reading it, it says appears to be in completes remission.:-S

My consultant has just emailed telling me to call in to talk to her after my infusion today. Scarey stuff!

Update later
Warm wishes
Karen
xx

[tonyfParticipant]

Hi Karen, keeping fingers and toes crossed for you.
Regards
Tony F

[eveParticipant]

Hi Karen

You must be totally confused by the e mail the consultant sent you!!!

I do not want to worry you,so take it in stages,radiotherapy. For the pain only!!
MRI shows some still active disease,it could be a small clump of cells,were you are getting the pain and radiotherapy will do its job.
Here is we're the worry comes in,Myeloma can become non secretor ,meaning it no longer shows in blood!!!that is why the only way to truly tell you are in remission is a BMB,even then it always has to be taken from the same area ,try to look at this another way,if the Myeloma is back,its good they found it early,if its not,you know that you have no Myeloma cells at that present time!!! Sounds contradictory ,but it helps to think that way,rather than bury your head in the sand.

My husband has had this problem from the first treatment,bloods good,feelings good,then the dreaded BMB only to find after 6 cycles of CDT it had gone up to 80 percent,we went in thinking good news,only to be told it,s most unusual,so we now look at things differently,
You have to listen to your body,after Slim had CDt then CDV then SCT after 100 days we were told he had full remission!!!!!after 6 months I ask for BMB,and originally told we do not monitor it that way, I persisted because I am a pest,he got the BMB only to find it was 10 percent in bones,now its 30 percent,but his bloods are showing none of this until it started in his kidneys,now on CDR,so you must listen to your body.
This disease reacts different in every one,and its a waiting game waiting for results,think how you feel in yourself,pain tiredness not improving,.you will not need results,you will know in yourself,if its back.

I will be keeping my fingers crossed for you Karen. Love Eve

[Kazzam2Participant]

Hi All, Thanks TonyF and Eve for your thought and best wishes.
well I had my infusion and then went down to clinic, my consultant had pre warned the desk staff to send me straight in! (no appoinntment.)

Anyway, she really only said the bone marrow test is to be on the safe side, that the recent MRI could just mean it gets worse before it gets better, when myeloma is got rid of it leaves gaps in the bone marrow, this sounds odd, but she told me not to worry (yeah right). I will have another MRI in 3 months. Oh an the vertobplasty I had last October has collapsed, so I may need another one, why bother if it has failed. that does explain why my pain is getting worse.

Eve, you said to listen to my body. I am and I know something is not right, i worry that the morphine is masking something, the pain is bad enough on it.

Oh well, bone marrow test on 2nd July, so we will see.

Thanks for your best wishes.
warm wishes
Karen
xx

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