Time remaining

[SCBS35]

Hello there!

I am hoping I can use your expert experience to give my grandpa and our family a better understanding of his prognosis and what that means in terms of "time left" with us.

The facts:

Prostate cancer, with PSA of 70 and rising after a long period of stability.
Secondary MDS with excess blasts 1. IPSS Score intermediate 2 1.5.
Karyotype with additional material on 11q22.

He was on Azacitadine but stopped due to Cytopaenias.

Last Bone Marrow Check: MDS with excess blasts, 1.6% on flow, 3% morphologically. "Stable disease".

Last blood test:

HB 56
WCC 1.06
N 0.43
PLT 40

The consultants won't answer the straight question of how "bad" the situation is now Azacitadine has been stopped and there are no other systemic options for the prostate cancer due to the MDS.

He is on monthly blood transfusions.

I was wondering if anyone had even a rough idea of the time we are looking at before this horrible disease wins?

[chris]

Hello there.

I’m so sorry to read about the desperate situation concerning your grandpa. I understand your strong need to try to find out more about your grandpa’s likely survival time but I’m so sorry that we cannot give any medical advice as we offer simply patient to patient support. Clinicians are also generally quite reluctant to do this since they are so often proved wrong. When I was first diagnosed I was given a leaflet which gave the average survival time as 12-18 months -and I’d already had the disease for over a year! I was terrified! And yet, here I am now 14 years on and with no treatment! I know that others are not as fortunate but sometimes people do confound the predictions!

What I would suggest, however, is to get your grandpa, maybe with the support of family members, to get a referral to a palliative care team at his usual hospital, or if you have a local hospice which offers hospice at home services, or contact Marie Curie. This is so that he and they can discuss with them what he would prefer to do in the time he has left. In terms of how much or little treatment he would want and where he would like to spend his time. I recently spoke to a lady whose husband had died and she said that, knowing what she now knew, she realised she should have involved the hospice months before as they have such good experience in meeting the needs of people when all the treatment options are closed. I don’t think you should regard this as a defeat but rather as a positive move to ensure your grandpa and your family can spend some loving time together without endless hospital visits which may not extend his life.

Your grandpa has a very caring and thoughtful grandchild who is looking out for him to help him at such a difficult time. I’m so sorry I cannot directly answer your question but I hope that you can find a way that you, your grandpa and your family can make your way through this difficult situation. I wish you all the best in this.

With very best wishes

Chris
Local Patient Support Ambassador

[chris]

As a PS. I note that the last bone marrow said “stable disease”. It might be worth asking his haematologist for an honest evaluation -not in terms of giving survival time - but of the likelihood of your grandpa being able to maintain a good quality of life on monthly transfusions? And how is your grandpa’s current quality of life? What could improve it in terms of starting (or stopping) any other treatments?

Chris

[Goldtooth]

I was had a poor prognosis when first diagnosed with MYLODISPLASIA RAEB2 in November 2014.
But I have been treated successfully with Azacitidine for 7 years, today I start 95th cycle.
I’m extremely lucky it’s still working for me and keeping AML at bay.
Best wishes and good luck
Anthony

[chris]

Anthony. So good to hear from you again and glad the treatment is still working well for you. It goes to show that many people will defy prognosis estimates of survival time.

So there is always cause for optimism.

And “stable disease” is an expression I quite like from a personal point of view!

Hope this helps

Chris

[SDWA13]

I am sorry to read about your Grandpa. I hope that someone here may be able to answer your questions.

'Time Remaining' is a subject much on my mind of late and I am very interested to see both Chris and Anthony comment on having a poor prognosis but defying the odds!
Can I ask whether you were diagnosed as High or Very High Risk? My husband is Very High Risk with an IPSS-R score of 8.5. His consultant has not been optimistic, so I'm interested to know if others have been in our position and still defied the odds!
Sue

[chris]

Hi Sue

My 12-18 month predicted “survival time” was not from a clinician but from a Leukaemia Care leaflet in 2009 - which has since been amended to give a much broader range of outcomes. My IPSS score was originally Intermediate-1 risk and when it changed to IPSS-R, it changed to Low risk. So I’m not in the same category at all as your husband, I’m afraid.

I should imagine Anthony was in a more similar situation to your husband.

Does your husband attend one of the specialist centres for MDS? If not, would it help to get an additional opinion? Or are you happy where you are?

Is your husband now having any treatment and what impact is that having on his quality of life? It would be good to get some honest answers to your reasonable questions about what lies ahead and I hope you are able to get this at his next appointment.

Thinking of you

Best wishes

Chris