Don't know what's going on with Dad's treatment

[Karen]

Not sure that anyone can give me any advice or feedback from their own experiences, but I’m worried and don’t have anywhere else to vent.

We’ve had a bit of a situation where Dad has been a passed from pillar to post for the past 12 months or so, and no one was doing anything about further treatment. He’s on weekly Hb transfusions (2/3 units) and has been for some time, which is not sustainable given the risk of iron overload.

Kings have been telling him something different each time he goes in (he’s sees a different person each time). Advice has gone the full spectrum from telling him he’s a candidate for a transplant and a donor has been found to staying with just supportive care through transfusions. It’s been very frustrating.

In March a biopsy showed a blast count of 11% (which was a huge jump from the steady < 2% he had been maintaining and which threw us into a panic). As a result he was sent for Azacitidine treatment, but when he attended the local hospital for treatment he saw the consultant haematologist and they did a biopsy that showed a blast count of < 2% again. Which has made them reconsider whether Azacitidine is appropriate.

The local hospital have been very pro-active about managing his case, and want to get to the bottom of why his Hb count drops so dramatically pretty much immediately after transfusion. To this end they have asked him to stop all treatment for 2 weeks (he was on a thrice weekly injection to maintain white cell production), so that they can get a baseline BMB next week.

He went for a blood test yesterday, and got a call from the hospital last night telling him to come in for an emergency platelet transfusion. His platelets have generally been stable (if a little low) and he’s only had to have platelet transfusions twice before as a result of other treatment (he was given aspirin by a doctor who hadn’t taken his MDS into consideration). I can’t help but wonder if stopping the injections has had an impact on his platelets.

Today he is back in for more Hb.

I’m really hoping that the new consultant looking at his case is going to be able to get to the bottom of what is going on. The key issue appears to be stabilising his Hb count.

Sorry, just feeling very helpless and frustrated with it all! It feels like nothing has happened for the past 12 months and the poor man is being left in limbo.

Karen x

[chris]

Hi Karen

Sorry that you are having such a frustrating time. The shared care aspect must be difficult and the lack of continuity at the Centre Of Excellence at Kings isn't helping matters. Would it be worth talking to the Clinical Nurse specialist at Kings (Janet Hayden or Geke Ong)?

In my experience, being told that I was a candidate for stem cell and going through the process to find a match did not necessarily mean it was going ahead at that time and now I realise it was part of the standard process to eliminate which treatments one might be in the frame for and also to start the search for a donor if one is not readily available within one's siblings.

Another approach might be to ask the next doctor you see what plan is in place for joint care i.e. who makes the decisions and how are they communicated within the 2 hospitals? Explain your frustration. Maybe that will help? Also ask why/if they think the platelets have been affected by the withdrawal of the injections?

I do hope you can find some answers soon.

Best wishes

Chris

[janetstanford]

Hi Karen
I know it is frustrating when nothing seems to be happening moving forward and nobody is telling you (or your dad) anything but that seems to be the case with this illness all or nothing
Chris seems to have hit the nail on the head communication issues and i think a conversation with both hospitals is needed so you and your dad can get some answers
and please no need to apologise should you want to rant please rant we all have to let off steam at times and i am know we are all happy to read the posts
good luck getting the answers Janet

[Karen]

Thank you both for your kind replies.

Chris - you've said exactly what I've been thinking. At the next appointment I think that we'll ask if one team can co-ordinate treatment/communications.

Since I wrote my original post one of the doctors that Dad has seen has suggested that his spleen may be at the heart of why his Hb drops so quickly (and why his platelets have also plummeted recently). It's been a bit enlarged for a while and it may be filtering out viable cells as well as ones that have reached the natural end of their life.

Dad has another biopsy on Monday, and is back for the results/consultation on the 30th. We'll know more then - at least I hope so.

Have a good weekend all.

K x