Newly Diagnosed

[brianb]

Hi Claire,

I hope you don't mind me adding my input to this discussion as well, just from a male point of view...... I had my transplant on 13th june 2012, I was very lucky, I didn't suffer really with any side effects. I was eventually discharged on 7th July with all the usual information regarding diet, busy places etc.

However, I, through neccessity have had to be rather relaxed about mixing with other people, I live on the Isle of Wight and have to travel for my blood tests and clinic appointments by Redjet (fastcat ferry type thing). But, my Consultants have been very strict regarding eating etc, I am still not allowed smoked salmon, where I see from Jaynes post she is. I think a lot of what you can and can't do depends on the type of person you are, what sort of treatment you have had, for example - I had one bout of Chemo and my Leukemia went into remission, then I took part in a clinical trial for Clofarabine and did NOT have TBI prior to transplant. Since my discharge I have had a couple of eye infections, a small bout of Laryngitis and am on Tuesday having my 3rd Donor Lymphocyte Infusion, I notice from Jaynes blog that she is still waiting for her 1st infusion, but has been given dates for childhood vaccines, whereas I am still waiting for dates etc.

I think as I said earlier it depends on the patient, but it also depends on the protocol of your certain hospital etc.

One thing I would say, though is, whilst in hospital I found it very important to have a routine, even if I didn't feel up to it. I made sure I had a daily shower etc.

I hope my input helps.

[clareybabs]

Hi brian,
thanks for replying to my post, luckily my MDS has not developed to AML, so my post transplant care may be slightly different, its good to hear from other people about how they coped with things, it means so much to know that i have got good support.. i will keep you posted how i get on

[Jayne]

Hi Brian

I thought it was lovely that you posted. Gosh, I find it really amazing how transplant patients are given such different advice. I think it depends on the hospital rather than the patients, because my eating guidelines were in the form of a booklet that was given to everyone. I was also in contact with another transplant patient from the midlands I think, who returned to work within a matter of 3 months or so, travelled with work and stayed in hotels! I was gobsmacked. I prefer to be on the side of caution because after all I dont want to do anything to make myself poorly or jeopordise my life basically, but I do understand that I have to get on with living too. Mind you, when I attended hospital (weekly to begin with), I was mixing with all sorts of people and travelling in confined lifts with them......I used to hold my breath! So some common sense is also required.

Again, I was talking to a transplant patient from down South and he has also had lymphocytes. I feel left out lol!!!! My donor has donated lymphocytes and they are frozen for if I should require them. Are you going to the bone marrow transplant day on 6th April? I am attending with my husband.

Jayne

[clareybabs]

Hi all, well it was 3 weeks last week since i had the appointment at newcastle to say my transplant had been put back to mid march, hadn't heard anything so i thought i would ring up my transplant co-ordinator. He basically said on the phone that i would need to find out my mrsa re-screen results, which i did - negative - i was so happy, then the bombshell. They had received a letter from my local hospital, to say i had a rash(spots), which bear in mind i have had them since the beginning of diagnosis so wasn't unduly concerned, but my consultant was concerned that they could be leukemic spots - so now they want a skin biopsy doing. Also when professor jackson at newcastle had been reading my notes, he had read that my platelets were low - so now he is concerned because of the drop in platelets my MDS has now progressed to AML. I just wanna know why my local hospital had not picked up on the fact that since jan, my platelets have been dropping continually - initially from 50, they are now 22. I am not haematology trained, but have been concerned myself about the drop in platelets and neutrophils - but all they seem to be concerned about is sustaining my HB, by giving me regular blood transfusions. This dual hospital arrangement is not working at all. Newcastle only seem to be bothered about getting things ready for transplant and my local hospital - topping me up with blood until the transplant. Majin problem is lack of communication between each hospital and me as the patient, it's been a farce from day one - i am seriously losing faith in the haematology dept and the NHS - (and i work for the NHS) no wonder patients complain - i hate being on the other side of the fence.
I now need another bone marrow biopsy, to see if i have developed AML - fingers, toes and everything else crossed i haven't, otherwise this is going to put transplant back even longer.
Have skin and bone marrow biopsy on tuesday, so i'll let you know what happens x
Just wondered those people out there who developed AML, what were your blood results?

[Jayne]

Hi Clair

Firstly, I think you deserve better care than this, and I believe it is out there. I have nothing but praise for the way I have been looked after and cant compliment the NHS enough.

I was initially diagnosed at York District Hospital, but immediately referred to St James, Leeds (Professor Bowen....he is AMAZING). Once I was referred to St James, although it meant an hours drive compare to 15 minutes I asked to keep all my care at St James and I think this has been imperitive to my quality of care. All my notes remain under one rough and my care team all know me and my story. For instance, I have recently had to be referred for physio and they said to make it easier for me I could be referred to York, but I asked to remain under St James. Can you do the same?

Regarding the worry you are progressing to AML, I did progress to AML. I am not certain the fact that your platelets have dropped mean this but I am no doctor. For me my platelets remained steady, allbeit at the low end of normal. My Hb dropped steadily over 9 months and it was a bone marrow biopsy that revealed an increase in leukaemic blasts. I therefore went into hospital quite quickly (they originally wanted me in in 2 weeks, but I asked for the kids February half term at home, so it was about 4 weeks). I started chemotherapy to reduce the blasts. This meant 2 lots of 4 weeks in hospital. At the end of this I was in remission and leukaemic cells could not be detected in my bone marrow, this put me in a good place for my stem cell transplant. So although all this is horrible, do be positive that you can get through this. I know you have really been thrown in at the deep end with no time to catch your breath really.

Take care
Jayne xxx

[GAVIN1976]

Hi JAyne.....following on. From your previous messages, how long we're you in hospital for the actual transplant?.....I am currently on waiting list, so just thinking ahead re timescales?

[brianb]

Claire,

I just wanted to add a couple of things....... I was initially treated at my local hospital on the Isle of Wight. Once I was diagnosed with MDS and I had my first meeting with my consultant at Southampton, my Isle of Wight consultant happily took a back seat and followed any instruction from Southampton. I did continue to have blood transfusions at Isle of Wight, but only out of necessity.

Gavin - When I had my transplant I was in hospital for 7 weeks.

Brian

[Jayne]

Hi All

When I had my transplant I was in for 4 weeks. I went in on the 29th June for 6 days of chemo and then 1 dose of TBI (total body radiation) - these were called day -7 to day -1. On day 0 I had my stem cells, since then on I have been counting my days, until recently when now I just know I am around 8 months post transplant. I did have a reduced intensity transplant because I only had 1 dose of TBI.

Jayne

[clareybabs]

Hi all, another update, went for my skin and bone marrow biopsy today - dermatologist reviewed my skin and said it was definately not leukemic cutis, so my consultant at darlington, liased with professor at newcastle - due to skin not being infiltrated with leukaemic cells, he decided that bone marrow biopsy was not needed - HOORAY - and we can just go ahead as planned with the transplant.

I'm so relieved it has not developed into AML, i rang the transplant co-ordinator within a couple of hours to give him an update, he was shocked that the professor still didn't want a bone marrow biopsy in view of my low platelets. He more or less said, oh well we'll see you in next few weeks/ in the near future, until i asked when i could have my medical - he then said or well suppose we could get you in this week, so booked for my pre-transplant medical on thursday. Hopefully i'll be given a few more details then.

i will keep you all posted xxx

[chris]

Hi Claire
That's all good news and the communication seems to have improved so hope things will now proceed without any further delays.

Best wishes

Chris