A bit of a quandry!

[chris]

Hi Jayne

Sorry for delay in replying - hectic weekend including my husband's birthday and 2 singing "gigs"! Then I realised you were off to the seaside anyway. I hope it refreshed you in mind and body.

Really sorry to hear that your treatment decisions have now "kicked off" due to your deteriorating energy levels. Hopefully the blood transfusion will have a beneficial effect (though not immediately from what others' experiences are on this Forum) and when your head is clearer you will be in a better place to consider all the different options.

Everybody is different but personally I would always try to balance the risk of harm/discomfort from the various proposed treatments versus the risk of harm/discomfort from the disease itself. If you are currently still judged to be at Low risk of the MDS progressing to leukeamia, is it reasonable to take high risk treatment options if you don't need to?

Your medical team should be able to tell you exactly what the risks of the treatments might be - not just as a theoretical risk but with stats to back it up. e.g. the actual percentage of people who suffer organ failure as a result of taking a drug- not just the possibility that it might cause this problem. e.g. if only 1% of people have this outcome, that is a very different proposition to if 80% of people have it.

Another thing I thought of to help you if you are finding this difficult (and don't forget you are entitled to this) would be to see another clinician at an MDS Centre Of Excellence and ask for a second opinion. Your Prof should respect this - although it is always difficult to broach as it must seem to him/her that you don't have full trust in their advice. However, it is your body and if it would reassure you to know that at least one other person agreed, then that will help you move on. If there is disagreement, at least you have the chance to reconsider your options. Reading this forum, it is clear to me that there are different approaches, even within the Centres of Excellence, and some are more treatment-orientated than others who are more conservative. Given the shortage of good evidence with such a small group of patients about different types of treatment, it is difficult to know which is the best approach and the answer is probably that both may be in different patients!

At the end of the day, it is you and your family that need to make a decision with which you are all comfortable but I'm still hoping that this is a long way down the road for you and that transfusions will give you more breathing space to reflect on it.

Good luck with everything and I hope the consultation and transfusion goes well later this week.

Chris

[Jayne]

Hi

Thank you all for your kind messages.

Well I am back in tomorrow for 3 units. I am then meeting the prof on 21st Dec as he wants to get my Hb levels to an acceptable level before discussing future treatment options as he says I will be in a stronger position to concentrate and make decisions.

I spoke to Sophie and she confirmed my thoughts and beliefs that my Professor is one of the leading Professors regarding MDS in the UK and also internationally. I suppose if I were to ask for a 2nd opinion I would ask to see Prof Mufti but the two of them are the same and liaise with each other etc so I wont be asking for a 2nd opinion as I trust my Prof with my life!

I have a list of questions ready and your mail helped me compile that list Chris.

Anyway, I am really tired and need to be up early tomorrow so need to go to bed.

Sweet dreams all.

Jayne

[chris]

Dear Jayne

I hope your first blood transfusion went smoothly today. Quite an "event" for you I guess - even though for others like Janet it is quite run-of-the-mill by now.

It must be so hard to be faced with these difficult decisions when your head is muddled by the condition itself. Your Prof sounds really supportive and you are at least clearer about what your questions are so that you will have more time and "thinking power" to consider the answers you get on 21st December. And reassuring for you to know you're with such an MDS expert.

Keep us in touch with how it went. Take care.

Chris

[Sheldon]

Hi Jayne
Hope you don't get this message twice, tried to post and it disapeared so puting out a new version.
Realy hope your transfusion whent well, and it was not to boring/frustrating just siting and waiting for it to happen.

Anyway, bet once you are over the stress of waiting for the transfusion to finish the buzz from its benefits will kick in and you will feel a new person.Please harness that energy and carry it through evenwhen energy may be getting a bit lower.

Tones of us on the forum are sendingyou ourpossotive energy, so be well
Sheldon

[Jayne]

Dear All

THANK YOU SO MUCH for your support, kind messages and for just thinking about me!!

Well I had my 3 bags on Thursday (more or less 1 litre), I wasn't bored at all! I was quite happy laying on my bed and watching the comings and goings. I took Christmas cards to write, my book and a phoenix order book as I need to order a new stash of birthday cards - I didn't do any of them....I just lay there! How lazy is that. I was in for 9 hours as well.

I was on a ward where chemo was being administered, and I was surprised that it was done on a general ward. There was one man, bless him, he had the most beautiful silver hair, was probably around late 60's and he was being told all about what may happen to him and how he may feel (and that he would lose his beautiful hair), he was given a right cocktail of drugs and I just felt he deserved a bit more privacy. I think if that was me I would have laid there crying knowing what was entering my body.

Anyway, it was Satuday evening before my bounce arrived! I had a headache all Thursday night/Friday morning. I think I may have overdone things yesterday as I feel tired today . I also had a couple of glasses of wine on Saturday with my mum (at her birthday meal) and then came home and had another and then a baileys......maybe not such a good idea. But that was me being 'normal' on a Saturday, lol.

So I wonder how long it will last, I really do feel a bit like a vampire....needing my fix of blood to keep me going! I had my hair coloured on Saturday, I am naturally very dark brown, I am now a reddish brown with some vibrant red and copper strands. It looks as though my blood has gone to my hair, lol.

Anyway, enough of this waffle. Thank you all very much.

Jayne xxx

[Sarah Reakes]

Hi Jayne,

I have been reading your various messages and exchanges and have been thinking of you facing your first session. So pleased that your first transfusion went well. I can vouch for your experience regarding the general lack of privacy in these wards, and the fact that the medical professionals don't seem to recognise the need to show some sort of empathy for what patients are going through at such a difficult time in their lives! I witnessed a similar situation in the oncology department when I attended for my initial bone marrow biopsy, and really felt for the patient concerned.

I have also read your message to Tommie and agree with your advice. I know it is not easy to be up-beat when you are felling so unwell and I really think it is the tiredness that gets to most people as it really does affect how we live from day to day. However, it is a case of trying to live with our limitations rather than fighting them and trying to pace ourselves.

Well I have loads to do and really am finding it hard getting the inspiration to get down to it but here goes.

Take care and have a great Christmas with your family.

Sarah xx

[chris]

Hi Jayne

So glad your first experience was good and you felt the effects so soon afterwards.
Re the privacy bit - totally agree with you and Sarah. I had my second bone marrow biopsy in a room just off the main waiting room and was so embarrassed when I came out to find a room - now full -of waiting outpatients as I had been yelling a lot - it really hurt!!! Not nice for them either - particularly the next person who was having one. Nor my husband who must have been going through agonies listening to me as he knows I don't normally make a fuss.

I wonder if your liver was complaining of overload as it may have had to work extra hard because of the transfusion? The nutritionist at the Cambridge Forum was advising caution with alcohol as with any disease where your organs are working overtime, your liver can do without having to deal with dealing with the toxins from alcohol while it is already under stress. I do like a glass of wine but am going to try to just become a social drinker and not drink at home when not in company. As my liver is enlarged becasue of the MDS I am not going to add to its woes!!

Like the idea of MDS-co-ordinated hair!! Could be a new trend!

Take care all

Chris