Please read the house rules and keep this community safe for yourself and others.
First appointment tomorrow
Hi there
My 46 year old husband waa diagnosed a few months ago with low risk type MDS. He is fit and well with no symptoms (I'm thankful every single day!!) and his only issue is low platelets.
Tomorrow we are going to meet the transplant Dr at Southampton hospital.
We have no idea what to expect really. I just wondered if anyone coukd share what happened when they had the first consultation. We do know they might do a blood test!
Thanks for reading!
Comments
Hi Pandapop, welcome to the forum. My name is Steve and I'm one of the online community champions here. I'm a transplant patient myself and had a stem cell transplant back in 2013 for ALL.
I remember my first appointment at the Haematology department after a blood test at my GP's showed I had a low white cell count. At that point I hadn't been diagnosed so the reason for my abnormal counts wasn't known.
I had another blood test when I arrived for my appointment and that was followed later that day by a bone marrow biopsy. I think the blood tests give a certain amount of information but the biopsy tells the medics what is going on much deeper in the blood system where the stem cells are produced. If your husband hasn't had a bone marrow biospy before, most people here will agree it's not a particularly pleasant experience. After a local anaesthetic, a needle is put into the hip bone and some of the bone marrow drawn off. In my case a sample of the bone was also taken and it was that which I found most uncomfortable. Thankfully it was only ever done once whereas the aspirate, drawing bone marrow off, became a regular procedure so I got used to it to an extent.
My condition was different so needed treating straight away to get me into remission and was followed by a transplant to reduce the risk of the Leukaemia coming back.
My first appointment was really about diagnosis of what was at that stage an unknown condition. I went back the following day to get the news of my diagnosis with blood cancer, which I half expected. I went back again the following day again and they told me more about the type of Leukaemia and that they were confident it could be treated.
In your husbands case I would think they want to monitor his condition, and decide what if any treatment is needed at this stage. If his bone marrow isn't producing enough platelets, is he having transfusions of platelets to top them up or some form of medication?
Hopefully others with experience of MDS may be able to give you more insight, which could be different to mine as an undiagnosed patient. In the meantime I hope the appointments goes as well as it can. Please keep us updated and keep in touch for whatever support we can give.
All the best,
Steve
Thanks for taking the time to reply!
My husband has been diagnosed via a (horrible) bone marrow biopsy and is a 'watch and wait' patient as he is asymptomatic and completely fine. His platelets aren't low enough to need any action currently.
He has been told he will need a transplant when his condition worsens, though nobody can predict when that might be of course!
We just have no idea what today's appointment will involve. I'm imagining just talk about risks etc....Will find out soon anyway!!
Thanks again!
Hi Pandapop,
Thank you for sharing your experience and your concerns - it's not an easy thing to put into words.
How did the appointment go?
My partner received a SCT for MF in qu1 of this year and, I though I don't know too much about low risk type MDS, the one thing that I'd add to the above is that, so we've been told - every case is so very different on a genetic level that predictions are hard {read impossible} to make by the consultants.
This can be quite upsetting (frustrating) when one wants to know 'what to do and/or expect' from any given meeting. The consensus is regularly some guise of 'how long is a piece of string?' whenever we ask about what to expect. Again, this could be case specific.
It may also be worth adding that the 'watch, wait and see' was the perfect plan for my partner who was in reasonably good health for 10+ years before action was required.
Best wishes,
X
Hello Pandapop (love the moniker!)
I do hope your appointment goes well. Do go with a list of questions is my advice.
I was diagnosed with 5Q- MDS in 2007, aged 53 when I had routine bloods taken prior to some surgery. I had had no idea that I was anaemic. 5Q- is also a relatively benign type and I too was on a watch and wait regime, seeing a clinician every 3 months. Although I remained pretty well until 2015, I did go through a period of requiring 4-6 weekly blood transfusions. I did have to fight for these though, to have them before my Hb levels dropped too low, as I was working, running a household and generally getting on with life. My clinician was pretty accommodating. I also required some treatments to remove the excess iron from my blood, caused by the transfusions. Although I was advised that I might eventually die of something non-haematological because of the ‘benign-ness’ of my MDS, unfortunately it did transform into AML in 2015. From which with good fortune, fantastic care and a SCT I have made a pretty good (some would say amazing) recovery.
The only other thing I would add is that I was warned that my first appt with the transplant doctor would be very scary as they would describe a lot of ‘worst case scenario’ post transplant challenges. From memory that was indeed the case, however the warning (from my local hospital doctors) meant I was better preparednto hear these.
Good luck!
Best wishes
Meerkat