[sachbarnesParticipant]

Hi Jane, hes on 10mg Len maintenance. Oxford Churchill has a 30 platelets and 0.5 neutrophils threshold before a pause and then on recovery above, it would be at the 5mg level. But as his numbers are still above that they say they aren’t concerned and carry on as normal. We are on holiday end of the month so ideally want a blood test a few weeks before that to make sure things are improving/stable.

Hi kh, yea read some really good things about it, and one of the few things that boost both platelets and neutrophils that I could find. I bought the herbal magic Papaya leaf powder one from amazon in the end, as reviews looked good. Goats milk is also supposed to be quite good, so have told dad to try and change to that. Cows milk on the other hand is actually bad for platelets apparently!

[sachbarnesParticipant]

Hi yes they usually have a cut off to pause until they come back up. also will have him try the papaya leaf extract people talk about which boost levels (I did another thread on that). and also ask about GSCF injections to boost. They don’t like giving them out as they are £800 a pop.

[sachbarnesParticipant]

Thanks will ask about that

[sachbarnesParticipant]

fyi in the Facebook group one of the original posters replied, and said they use PAPAYA LEAF EXTRACT POWDER, bought from Amazon made by AUSHA.
am going to look into it.

[sachbarnesParticipant]

Fyi I asked about MRD testing again yesterday, as when dad has his next bone marrow biopsy, it makes sense to do it when that’s possible if the timing works.

He said apparently it’s with NICE for approval for anyone who has had a STC and is on maintenance, with decision likely to be within the next 2 months. He doesn’t think they will approve it though, and they still have some legalities to have it up and running in Oxford privately anyway. He thinks by March this is hopefully in place.

[sachbarnesParticipant]

Thanks Jane. We had the consult, with his specialist yesterday and he isn’t worried. Dad also has an ongoing chest infection at the moment, so a lot of his other bloods could skewed because of that apparently. He expects the kappa/lambda to come back down eventually.

[sachbarnesParticipant]

Thanks as always Jane. Most valuable person on the forum imo.

[sachbarnesParticipant]

`hi sue, which medication helped with appetite? tx

[sachbarnesParticipant]

Hi all, thanks for the messages. Hope your husband is doing well.

Dad went in for the Transplant on the 16th as planned, but his paraproteins went from * to 4.8 the week before. Our consultant was still happy to proceed, as he was still VGPR from diagnosis (59>19>13>13>10>8>7>10>5>*>5), lot of 5 jumps up and down.

He spent 2.5 weeks in hospital and had a chest infection/mild fever which antibiotics too care of fortunately.

Now he is home recovering, with twice a week checks on his bloods, gcsf injections on and off to keep his neutrophils above 0.5, currently 1. Platelts up and down between 10 and 20. hopefully these start stabilising and increasing on their own now we are at SCT+30.

Anyone know when we can have the first covid jab again?

[sachbarnesParticipant]

thanks all. day 7 now and his neutrophils are nearly at 0, platelets 42, coping okay so far. they have him on gcsf injections too.
feels a little sick, and appetite has gone. has to just get through this part, and hopefully on the up soon.

[sachbarnesParticipant]

ty. re ice, did you continue with this constantly during your whole stay?

dad is on day 4 post melphalan. day 3 post cells. doing okay so far, but I guess the next few days will be the drop off right? noticed his blood counts remain normal range for now, but interestingly his neutrophils have gone up. were 3.4 going into hospital then went upto 8 and now 6 post cells. I guess they will drop off in the coming days, but thought this was strange.

tx again for the advice and comments.

[sachbarnesParticipant]

thanks for the comments. quick question, dad is having his melphalan today, and they have given him Dex too? dont remember reading that, is that what happened to you also?
tx

[sachbarnesParticipant]

Hi, saw the consultant on Wednesday. He said Oxford Churchill offer it privately at around £1000, and it’s one of the only places that does. He said it’s still in discussions with NICE for NHS rollout, because if the depth of response is at a certain level, maintenance would not offer any additional benefit.

I told him we will look to have it done ongoing, maybe every 6 months post SCT. In my view, Lenalidomide could always be picked up as maintanence if still at MRD negative but depth of response decreasing.

[sachbarnesParticipant]

Hi Jane/Bear.

We have our final consultation on Wednesday so will ask then if there are any options.

I know that bone marrow biopsy/flow testing is done from time to time to give MRD status in the UK, but not to a high level. i.e the range of MRD negativity can be 1 in 10,000 cells accuracy all the way to 1 in 1,000,000 cells.
If you can get MRD negative at 1 in 1,000,000 then its the most accurate measure we have of long term remission. But NHS testing in the UK doesn’t reach this accuracy. In the US they even use it to see if patients need SCT, because the pre SCT depth of response could be at a level where it wouldn’t improve anything further anyway.

I think with dads light chain ratio still outside range, and him being 68, it probably makes sense for us to go ahead with SCT regardless. But for future monitoring, I really want to see if we can get it done.

Will update if I find anything out.

[sachbarnesParticipant]

Great news Caroline, dad is set for 16th Feb. They told us at last consultation that there were barely enough staff on to administer chemo on the wards during January! Hopefully everything will start normalising somewhat now and no more delays.

Even though dads paraproteins went from 5 to 0 in the last bloods, his Kappa stayed above range 25 to 24. But his Lambda went from 9 to 3, sending his ratio from 2.75 to 7.54. So that still needs to come down. It seems strange how they both went in different directions. Hopefully STC does the trick and brings that down too.

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