I need some support please - BMT cancelled or is it?

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Josie

I need some support please - BMT cancelled or is it?

Post by Josie » 23 Feb 2011 20:44

Hi, i was booked in to have bone marrow transplant on 1st March. As you can imagine with two young children and a job in a school there was a lot to organise. After a day of tests at Kings I got a call to say the transplant was being delayed due to the donor traveling (two weeks before I was being admitted). Ok not ideal but childcare still available and job would be ok for more time off. (I had to stop 4 weeks before the transplant to minimise infection). Informed all this by telephone very impersonally then told to go to clinic today to find out more.
My husband and I thought we would be given an updated date and new appointments for Hickman line insertion etc.
No silly me - the transplant doctor said that perhaps it was not the best time for a transplant as it was a delicate balance and even though my Hb is sliding the bone marrow biopsy was abnormal but stable. However if I wanted to go ahead they would have to support that decision. my husband was so upset as was I. my life has been on hold for three years waiting until such time as i needed a transplant and now i'm built up for it, organsied, ready mentally and they decide maybe not. How can i go ahead with the transplant not knowing if the transplant team are 100% behind me? what do i do about work - they had a collection for me and have a temp in covering my role for the year i should be off for. If i go ahead with the transplant (which is how its been left) and things go wrong it's my fault. My girls are ready because i had to prepare them. I don't feel well. I am anaemic and i am struggling day to day and yet I cant make this decision myself. We were all decided and set. I feel very numb.
Luckily I called my clinical myeloid nurse on getting home and she has made an appointment for me to go back up on Monday - another £30 and on my own as husband cant take off any more time. people are fed up getting mucked about. This is my life and i am a person not a number or a disease!
I really need some support guys. not sure if anyone has any words of wisdom for me? Jo x
janetstanford
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Re: I need some support please - BMT cancelled or is it?

Post by janetstanford » 24 Feb 2011 14:59

oh a difficult one i may not be of any help but a reply lets you know others are thinking of you and some of us can relate to your pain and frustration....

can i ask is the transplant just for blood cell production...are all other counts normal or managable ...
i have been on transfusions for almost 3 years now ..while other cells counts have improved at present platelets just below normal whites ect good... i have discussed bmt several times with the doc and it has never got any further than that because of the improvement ... but i know how frightening even the thought of 1 is and how much soul searching you must have done to reach this stage ... esp where your family is concerned ...there are others on the site who have had bmt maybe a message to each of them may reap some words of wisdom ... or a call to sophie who i am sure will listen i find somebody who listens is worth thier weight in gold ...
as nice have let some mds types have vidaza maybe you could discuss this with your nurse as being an option in the short term ????
i do hope you find a solution quickly and 1 which is best for you and your family...will be thinking of you ... take care
janet
chris
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Re: I need some support please - BMT cancelled or is it?

Post by chris » 26 Feb 2011 14:10

Dear Jo

I can see how angry and upset you must be having made a considered decision about the BMT, got yourself and everybody around you mentally prepared and then to have to consider not only a possible delay but a cancellation. I hope that the appointment with the nurse specialist on Monday may help you with any decision you have to make.

You are worried that if you go ahead in the face of the current reservations from the transplant team and anything goes wrong, then it will be your fault? I'm quite sure that they would not let the transplant go ahead if it were clearly not in your best interest but ultimately of course it does have to be your decision (as it was when you decided the first time) and it is not an easy one to make. All I would say is, another way of looking at your difficult situation is that you have been given an opportunity to re-visit your decision with possibly some different factors to take into account. In hindsight, you might be glad to have beeen given this opportunity and the practical issues around changes to childcare arrangements and time off work, though important and possibly embarrassing, should not influence your decision as ultimately, you need to try, with your medical advisers, to work out what is the best and safest course of action given all the medical information you have NOW.

I'm sure you were told about the risks of the BMT and, if you have read "The 7 steps to success" or seen any other information, you will know it is not a walk in the park by any means, though clearly success rates are improving all the time. The scary fact is that there is still a chance that you might not pull through and if you do, you are likely to be quite poorly for a considerable length of time - all worthwhile if it is successful of course. I am presuming that, given your age, you would have been scheduled for the full intensity BMT?

However, if your disease is showing signs of stability it may be that your medical supporters feel that the balance of the pros and cons around the decision has changed somewhat? Also, we have just heard last week that Azacitidine has been approved by NICE for funding in the NHS for treating high- and Intermediate-2 risk patients so maybe the availability of that drug could help as another option in your treatment or even to get you in a better physical shape prior to a transplant?

Nobody else can make this enormous decision for you and everybody is different. Some people are risk-takers by nature, others are more conservative. Many people feel better about "doing" something rather than nothing but sometimes maybe "wait and see" can be the right decision. Clearly, your husband needs to be part of that process but I think it would be really helpful if you also had some professional counselling to help you sort out what the really, really important decisions are and the practical arrangements will then have to be fitted around that. (Can Janet Hayden at King's arrange this for you?). You also need to have good, clear information about the risks and benefits from your medical supporters to help you with this.

I hope you will soon be able to put this horrible " limbo" situation behind you and move forwards in whatever way you feel comfortable. At the end of the day, Jo, it's your life, you have to do what's right for you and your loved ones and no recriminations or blame because we cannot see into the future and just have to do the best we can.

Good luck

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
chris
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Re: I need some support please - BMT cancelled or is it?

Post by chris » 26 Feb 2011 16:06

Hi Jo

Sorry but had another thought of something you might find helpful. There are some webinars (webcast seminars) delivered by the US Aplastic Anaemia Foundation which relate to MDS and decisions about Stem cel trasnplants. There are 2 archived webinars that I think you would find helpful but you do need to spend some time sitting at your computer listening to them! One is by Dr Mark Karacyio called Bone Marrow and Stem Cell transplantation and the other one by Dr Steven Gore called Treating high risk MDS. I hope this link below will take you straight to the correct page but if not go to the Home Page of this UK MDS site and click the link that says register for the webinars.

Hope it helps

Chris

https://live.blueskybroadcast.com/bsb/c ... 1&CAT=1425
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
Josie

Re: I need some support please - BMT cancelled or is it?

Post by Josie » 28 Feb 2011 16:22

Wow, thank you so much fro all your support and kind words. i went up and saw Prof Mufti today. What a difference. i had been dreading it but Janet and Prof were fantastic. Also my husband had written the most fantastic letter listing all our questions and the chronology of events.
Prof Mufti said that the whole situation had been handled wrongly and was so pleased that I had gone back today. He was much more pro transplant but he is going to call me after speaking to some of the other doctors.
After all the emotions of the last few days I feel absolutely exhausted! Early to bed tonight i think. we shall see what the phone call brings.
Thanks again everyone. xx
chris
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Re: I need some support please - BMT cancelled or is it?

Post by chris » 28 Feb 2011 18:02

Hi Josie

That's great. Sounds like you had a very useful meeting today and hopefully Prof Mufti / Janet will be able to get a better perspective and come back to you with their up-to-date professional opinion. Then you will be able to relax.

Do come back to the Forum and let us all know what the outcome is for you.

Have a good sleep!

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
janetstanford
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Re: I need some support please - BMT cancelled or is it?

Post by janetstanford » 01 Mar 2011 13:16

good news hope you are refreshed after your good nights sleep ...and do let us know the outcome

:) janet
Josie

Re: I need some support please - BMT cancelled or is it?

Post by Josie » 07 Mar 2011 11:11

Well the phone call came and the transplant is back on. The donor can donate on the 27th April so i will go in 10 days prior to that! I am pleased that there is a decision but I will not trust the date until i'm actually there!
I am really suffering with headaches and may need a transfusion prior to going in but all jogging along! Jo x
chris
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Re: I need some support please - BMT cancelled or is it?

Post by chris » 07 Mar 2011 13:22

Hi Jo

Good to hear that all is back on course now and that you are happy with the outcome. That must be a relief for you - especially as Prof Mufti himself is supportive of that course of treatment. Hope you and your donor will keep well until T-day!

Take care

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
janetstanford
Posts: 335
Joined: 01 Nov 2010 17:54
Contact:

Re: I need some support please - BMT cancelled or is it?

Post by janetstanford » 07 Mar 2011 13:36

i am glad to hear you have a date confirmed although you will worry and wonder if the choice is right ect it you are now going and looking forward i am sure the soul searching you have done has helped you make the right choice for you and your family......

you mention a blood transfusion as i also have regular transfusion can you tell me how often you have them what your blood count is how long you have recieved them ect and how you came to having the bmt was it your doctor and if so what reasons did he give for that suggestion....i have had several conversations with my doctor about a bmt but it has never happened i have been having transfusions for 3 years ....and i am on watch and wait symptoms inc iron overload .... treatment is so different in england ect dependent on where you live who your doctor is i just get so confused and frustrated
so take care hope to read a post soon
janet
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