[FOXLEYParticipant]

I had my SCT in Nov last year and am now looking for travel insurance. One of the questions on the form was 'Was you SCT successful?' My consultant said 'partially'. My PP went from below 2 before the transplant to 2.3 after and has now drifted up to 3.2 at the 6 month stage. I wonder what other people's experience of PP levels after transplant has been. My consultant said that complete remission i.e. PP at zero is only achieved in 15% of cases.
Chris

[PerkymiteParticipant]

Hi Chris, My pp went to 1.7 prior to SCT and then hovered around the 2.3 mark for 2 years. I was told at the time, of the SCT, that they expected it to start rising after approximately 18 months. You have hit one of the big problems in trying to obtain insurance "the interpretation of the results" :-S . As they say you only have a partial result, i.e. did not go to Zero, but, Partial or full they both have a limited "shelf life".

Kind regards – vasbyte

David

[MicheleParticipant]

You've asked a very interesting question there Chris.

When I was first diagnozed, my PP's were 46. After 6 rounds of CTD they dropped to below 1, or what the specialist called a "trace".
After SCT, they were still showing as a trace. 15 months later…you've guessed it, still a trace.

At first I wondered if it was worth going through the SCT for what seemed to be no difference in my PP readings.
However, on the whole I think it was better to have the SCT whilst the MM was on the back foot so to speak, rather than wait for a relapse.

I've been assured that the SCT was successful and that I'm classed as being in a "very good partial remission". (the most common category apparently).

I haven't been abroad since the SCT so haven't had to answer any vague insurance questions, but will do one day soon!

🙂

[DaiCroParticipant]

An interesting question indeed.

I was also trace for a while before being declared in 'complete remission', following my CDT. I was declared in 'complete remission' at my 100 day post SCT stage and then 'relapsed' after my 300 day stage… so, as my American friends are so fond of saying… 'Go Figure'.:-P

I can't.;-)

Dai.

[PeterJamesParticipant]

Hi Chris
Re travel insurance , I got a quote from " now I can travel " ) 0845 2307 155 ) in march this year
This was for a 12 month insurance , both wife & self are 70 , have other per existing conditions
They are very aware of mm , they contribute to UK Myeloma
I was not asked re my pp level , I just explained the treatment I had been through, from A to Z , also went through our other conditions , nothing too onerous .
The premium was just under £490
Excess for any mm claim was £750 , otherwise excess was a lot less
Hope this helps
Peter

[PerkymiteParticipant]

Hi Peter, for 12 months world wide travel insurance that is very good I think.

Kindest regards – vasbyte

David

[PeterJamesParticipant]

Hi David
I was quoted the fee of £460-68, which i have a ref number for & can pay when we book a holiday, we are going to the i o w in two weeks time , only for a week , but i'm not bothering to take out insurance as we are relatively close to home & now all paid for , i would take it out if going abroad
The excess's only comes into play if we claim , ie , is deducted from the claim
The standard excess for wife & self is £60 each, only if we make a claim
For me , if i were to make a claim against my mm , the excess is £750
Hope that helps
Peter

[PeterJamesParticipant]

Hi David
A further point
I got nowhere trying to do the online application forms
The best result was with a direct phone call
All the best
Peter

[AlexBParticipant]

It's a good question

I encountered two similar tricky questions on insurance forms

1) is my myeloma in remission?
My nurse basically said if its stable and below its peak, then it's remission – even if that is a PR or VGPR, rather than CR

2) am I waiting on further diagnostic tests?
Well in always waiting on tests, but I figured that regular blood tests aren't "diagnostic"

[PerkymiteParticipant]

Hi Guys, To qualify for the statement "remission" The consultant has to say it i.e. "You are in remission", otherwise the answer has to be no surely.

Rather hijacked Chris's posting here, sorry Chris. If we want to discus this further perhaps we should set up another posting.

Kindest regards – vasbyte

David

[PeterJamesParticipant]

Hello all
I suggest someone else tries " now i can travel"& gets a quote
Mine was very reasonable considering our other pre existing medical conditions
]I would have thought there was little difference in their eyes between full remission & good partial remission
At some point whatever the remission type the beast will return
Not that anyone knows when this will happen
Peter

[HelenParticipant]

Hi There
Just to add to this, when my sflc's went up a bit in march my consultant said he would wait until we had confirmation of my BMB result before relapse was determined. Until he decided i was relapsed, i was in remission! BMB was after the third definitely higher result, they crept up over the previous 6 months in a continuous slow rise, as I think David described his numbers a few months ago.
Love Helen

[FOXLEYParticipant]

Thank you Helen and everybody else who has replied to my original post. They all make very interesting reading and give ample food for thought.
Since my original post a friend has shown me a Macmillan booklet about travel insurance. It lists a fair number of firms who specialise in the cancer area.
Thanks again,
Chris

[Author]

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